Written by BERNARD J. HAMMES, PHD. & LINDA BRIGGS, MS, MA, RN. Classroom Version

Transcription

1 B UILDING A SYSTEMS A PPROACH TO A DVANCE CARE PLANNIN G Written by BERNARD J. HAMMES, PHD. & LINDA BRIGGS, MS, MA, RN Classroom Version

2 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Written by BERNARD J. HAMMES, PHD & LINDA BRIGGS, MS, MA, RN Produced by RANA LIMBO, CATHY FISCHER & MARY BETH HENSEL i

3 Published by Bereavement and Advance Care Planning Services Gundersen Lutheran Medical Foundation, Inc South Avenue, Mailstop ALEX La Crosse, WI ABOUT GUNDERSEN HEALTH SYSTEM Gundersen Health System is a comprehensive healthcare network including one of the nation s largest multispecialty group medical practices providing services through regional community clinics, hospitals, nursing homes, home care, behavioral health services, vision centers, pharmacies, and air and ground ambulances. Gundersen Health System employs more than 600 medical, dental, and associate staff, and nearly 6,000 support personnel. Headquartered in La Crosse, WI, Gundersen Health System serves 19 counties in western Wisconsin, northeastern Iowa, and southeastern Minnesota, and has been named one of the top 100 healthcare organizations over a dozen times. The main campus of Gundersen Health System serves as a tertiary referral center and is designed as the Western Clinical Campus for the University of Wisconsin-Madison Medical School and School of Nursing. ii

4 B U I L D I N G A S Y S T E M S A P P R O A C H T O A D V A N C E C A R E P L A N N I N G T A B LE OF CONTENTS PREFACE... 3 CHAPTER 1 OVERVIEW AND BACKGROUND... 9 Introduction... 9 Why is Planning Important? The La Crosse Experience The Definition of Advance Care Planning Understanding Reflection Discussion Conceptual Framework Part I: Understanding the Advance Care Planning Process The Doctrine of Informed Consent The Adult Learning Principle of Engagement The Narrative Approach An Ethic of Caring Relationships Conceptual Framework Part II: Designing Systems to Honor Patient Preferences (Building Microsystems) Basic Conditions Must Be in Place Design Elements: Overview of the Four Elements of an Effective ACP Program Key Element #1: Systems Design Key Element #2: ACP Facilitation Skills Education and Training Key Element #3: Community Education and Engagement Key Element #4: Quality Improvement Conclusion References CHAPTER 2 BUILDING YOUR ACP PROGRAM KEY ELEMENT #1: SYSTEMS DESIGN Introduction The Advance Directive Document Analyzing the AD Document Essential Design Elements of an Effective AD Document Adopting a Universal AD Document Medical Records Storage and Retrieval System Review of AD Documents Guideline for Paper and Electronic Storage Strategies for AD Review and Update Recommendations for Transferring Patient Preferences ACP Team and Referral System iii

5 The Team Approach to ACP The story of one team s approach to ACP in a clinic setting Defining the appropriate ACP team The ACP Team Referral System Conclusion References CHAPTER 2 APPENDICES Appendix 1: Designing Your ACP System Infrastructure - The AD Document Appendix 2: The La Crosse Region Power of Attorney for Healthcare Document Appendix 3: Designing Your ACP System Infrastructure - The Medical Record System Appendix 4: AD Review and Entry Appendix 5: ACP Admission Assessment Flow Map Appendix 6: The Team Approach to ACP- Defining Roles and Responsibilites Appendix 7: ACP Referral Intake Tool CHAPTER 3 BUILDING YOUR ACP PROGRAM: KEY ELEMENT #2: ACP FACILITATION SKILLS, EDUCATION AND TRAINING Introduction Standard Approaches to AD Completion Have Failed The Respecting Choices Approach to ACP Facilitation Skills Training Works First Steps Facilitator Certification training programs: theoretical Concepts and Teaching Strategies Respecting choices Stages of Planning Approach Respecting Choices ACP Facilitation: Skills Education and Training Programs The Role of the ACP Facilitator ACP Education and Training for Other Stakeholders Basic Concepts in Advance Care Planning RN Concepts (the role of the nurse in ACP) References CHAPTER 3 APPENDICES Appendix 1: First Steps Facilitator Certification Appendix 2: Disease-Specific Facilitator Certification Appendix 3: POLST Facilitator Certification Appendix 4: ACP Facilitator Responsibilities Appendix 5: Sample ACP Presentation for Physicians CHAPTER 4 BUILDING YOUR ACP PROGRAM KEY ELEMENT #3: COMMUNITY EDUCATION AND ENGAGEMENT Introduction Single-Modality ACP Educational Strategies are Ineffective A Conceptual Framework for Designing Community ACP Education and Engagement Campaigns Concept #1: ACP is an Ongoing and Staged Process iv

6 Concept #2: Education is Different from Engagement Concept #3: Social Marketing Strategies Assist with ACP Motivation and Participation Concept #4: Motivational Interviewing Techniques Increase Participation in ACP Concept #5: Defining Community Assists in Designing the Educational Approach Concept #6: The Goals of the Educational Strategy to Assist in Determining the Approach Respecting Choices Community Education and Engagement Materials Development of a Community Education and Engagement Campaign Partnerships with Key Community Stakeholders Visibility within an Organization or Community Assessing the ACP Needs of Diverse Populations Strategies to Address ACP Education and Engagement for Diverse Communities References CHAPTER 4 APPENDICES Appendix 1: Pre- and Post-First Steps Community Advance Care Planning Program Participant Survey Appendix 2: First Steps ACP Protocol for Attorneys Appendix 3: Attorney ACP Survey Appendix 4: First Steps ACP Education and Engagement Sample Program CHAPTER 5 BUILDING YOUR ACP PROGRAM KEY ELEMENT #4: QUALITY IMPROVEMENT What are Realistic ACP Outcomes? Process Measures Outcome Measures The Five Promises of an Effective ACP Program Principles for ACP Quality Improvement Initiatives Steps in Designing a Quality Improvement ACP Initiative Step 1: Organize an ACP Quality Improvement (QI) Project Team Step 2: Gather Baseline Data step 3: Design a Basic ACP Microsystem Step 4: Design an ACP QI Pilot Project Step 5: Communicate the Success and Lessons from the Pilot Projects Step 6: Develop Next Steps for Dissemination References CHAPTER 5 APPENDICES Appendix 1: The Five Promises Promise #1: We Will Initiate the Conversation Promise #2: We Will Provide Assistance with ACP Promise #3: We Will Make Sure Plans are Clear Promise #4: We Will Maintain and Retrieve these plans Promise #5: We Will Appropriately Follow These Plans Appendix 2: ACP Quality Improvement (QI) Pilot Project Implementation Design Template Step 1: Organize an ACP Quality Improvement Team v

7 Step 2: Gather Baseline Data on ACP Outcomes Step 3: Design the Key Systems for Successful Pilot Project Implementation Step 4: Design the ACP QI Pilot Project Step 5: Communicate the Success and Lessons from the Pilot Project Appendix 3: Respecting Choices Process Outcomes Measurement Tool Appendix 4: Respecting Choices Outcome Measures Chart Audit Forms Appendix 5: Patient Satisfaction Survey Post ACP Discussion Appendix 6: Suggested Physician Interview on ACP/ADs CHAPTER 6 SUSTAINING YOUR ACP PROGRAM Diffusion of Innovation: Theory and Strategies Key Components in Designing a Plan for Sustainability The ACP Oversight Committee Development of ACP Standards of Practice The Role of the ACP Coordinator Identifying and Overcoming Barriers to Implementation Developing Communication Pathways Quality Improvement Summary References CHAPTER 6 APPENDICES Appendix 1: Sample ACP and AD Policy Appendix 2: The Role of the Advance Care Planning Coordinator Certification Disclaimer The term certification, as used in Respecting Choices educational programs and products means that Gundersen Health System issues a certificate upon fulfillment of the following elements: 1) completion of a specified Respecting Choices educational program with standardized content and processes; 2) successful demonstration of skills associated with the specified program; and 3) if applicable, an 80 percent or higher score on a written examination associated with the specified program. The Respecting Choices certification programs are not credentialed by a national accreditation body. vi

8 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G PREFACE 1

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10 PREFACE Within the last 30 years, the patient rights movement ran head on into the realities of end-of-life care. Such landmark cases as Quinlan, Cruzan, and Schiavo forced our society to look at a patient s right to refuse treatment even when modern medical technology could extend life. One response to these controversies was the passage of state statutes that first created legal documents like a living will, and later, a power of attorney for healthcare. These state statutes were complemented by the federal Patient Self-Determination Act that required hospitals and other healthcare providers to ask adult patients upon admission to a hospital if they had some type of legally created advance directives (ADs). The Act also mandated that hospitals and providers give patients written information about their right to forego medical treatment and about their right to have an AD and assistance in creating such a document. The evolving evidence suggests that the standard AD efforts have not been successful at resolving the human, ethical, or medical controversies. The prevalence of statutory AD documents in patients medical records remains low. Even when completed, the documents are often unavailable or unknown to the treating physician and not specific enough to guide clinical decision making when necessary. In light of this evidence, some commentators have declared that the use of statutory documents has failed, and some have argued that ADs cannot work. We have a different story to tell. In the mid-1980s, one of the authors of this manual began to do ethics consultations as part of his role on the Gundersen Health System Ethics Committee. Over several months, he faced three situations that called for new thinking about how health professionals cared for patients. These cases involved patients with end-stage renal disease who suffered devastating strokes. Healthcare providers expected these patients to survive for some time if dialysis treatments were continued, but they did not expect the patients to regain awareness of self, others, or their surroundings. In all three situations, the patients would be dependent on others for care and require dialysis three times a week. The families of these patients did not know what to do. When asked, What would your parent want in this situation? the families all responded in the same way: If we only knew! In each case, three issues were identified: (1) We did not, and never would, know for certain what the patient wanted; (2) no matter what decision they made, the families and health professionals would live with considerable uncertainty about their decision, resulting in lasting distress; and (3) the uncertainty required incredible amounts of staff time attempting to sort through the ethical complexities. These outcomes were bad for patients, bad for their families, and bad for the health professionals who were caring for them. These situations represent a common and familiar story in patient care. Upon reflection, it was obvious that the outcomes were potentially preventable. The patients were not random individuals who unexpectedly suffered devastating medical problems; rather, they interacted with health professionals 3

11 on a regular basis and were already using extensive medical resources. It was also obvious that medical treatment would end at some point: we all die. In addition, a significant probability that the patient receiving life support would not be able to make his or her own medical decisions at crucial points in time. Finally, we understood that patients facing similar medical situations would not necessarily make the same choices about their future medical treatment. So the characteristics of the moral dilemma seemed clear. Its solution was equally clear: The ethical, human, and medical dilemma could be prevented IF we could engage patients in planning for these future healthcare decisions. Some practical and clinically relevant questions needed to be asked: (1) Was it possible to get patients to plan for future medical care? (2) If so, what would the process look like? (3) If planning occurred, how would the plan be documented? (4) How could it be ensured that the documented plan would be available to the health professionals caring for the patient when and where it was needed? and (5) Would such plans improve decision making and change the outcomes? Clearly, answers to these questions would not come from either state statutes or federal regulations. It was obvious that the living will statutory document and the mere appointment of a healthcare agent or proxy in a power of attorney type document would not be enough. A more complete interaction and conversation with the patient and those close to the patient was also needed. We responded by developing an innovative approach for planning in advance for future healthcare. The approach helps reshape the patient/health professional relationship and how decisions are made when patients have life-threatening medical problems from which they are unlikely to recover, however their life might be extended by medical treatment. Our approach proves that it is possible to design and implement an advance care planning (ACP) microsystem that leads to both knowing and honoring a patient s preference and goals for future treatment. This ACP microsystem, known as Respecting Choices (RC), results in a more patient-centered healthcare environment and supports a shared decision-making approach to patient care. The RC approach was successfully applied to whole communities, not just a single population of patients (e.g., end-stage renal disease). The success of our approach has been recognized by national leaders and has been replicated in communities around the world. A case-based article by Atul Gawande in The New Yorker magazine, Letting Go, explores the need to better understand the role of medicine and healthcare providers in helping patients make complex healthcare decisions (the article is available in The New Yorker, August 2, 2010, and online.). Upon learning about the RC model, Dr. Gawande wrote, It was that simple and that complicated. We invite you to create your own success story. This manual outlines the principles of the Respecting Choices approach and the many lessons we learned in our own and other communities. We hope it will provide you with the tools and strategies you need to reshape and build an ACP microsystem. There is no single recipe for creating an ACP microsystem; each will have unique features and challenges. This manual outlines the key elements that must be integrated in order to shift the culture of healthcare 4

12 decision making and to ultimately change the way healthcare is delivered in your organization and community. The manual has six chapters. Chapter 1 provides an overview of the Respecting Choices ACP microsystem and conceptual underpinning of the key design elements. Chapter 2 describes the systems that must be designed to support your ACP program and to allow you to honor individuals informed healthcare decisions. Chapter 3 outlines the importance of ACP facilitation education in creating a competent ACP team and consistent ACP service. Chapter 4 describes strategies for designing an effective community education campaign that serves to promote ACP as an ongoing and dynamic process. Chapter 5 defines the critical role of quality improvement in promoting an environment of continual growth and development of your ACP program. Lastly, Chapter 6 describes strategies to sustain your ACP initiative and disseminate it to a wide audience. We hope this manual will be a useful guide for you as you imagine the possibilities of creating a new approach to advance care planning. We recognize there is more to learn. If you have a story of success, a lesson learned, or any suggestion to improve on the content of this manual, we welcome your thoughts. Please your comments to rchoices@gundluth.org. Sincerely, Bernard Bud Hammes, PhD Director Linda Briggs, MS, MA, RN Associate Director 5

13 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G CHAPTER 1: OVERVIEW AND BACKGROUND 7

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15 CHAPTER 1 OVERVIEW AND BACKGROUND INTRODUCTION Congratulations! By beginning your journey through this manual, you have already made a commitment at some level to improve the ACP strategies in your organization or community. You undoubtedly have a variety of reasons why you are interested in learning about the Respecting Choices ACP model. Perhaps you are a chaplain who has counseled family members who disagree about what their loved one would want for life-sustaining treatment. Or you are a nurse who has experienced moral distress in providing interventions you feel are doing more harm than good, and no clear plan for resolution seems possible. You may be a respiratory therapist who has listened to families express their fears and worries about removing a loved one from a ventilator and the burden they feel if they make this decision. Or you are a physician who has struggled with families who believe their loved ones would want to keep on fighting ; they insist on providing life-sustaining treatments even though the treatments have high burdens and the patients specific preferences were never discussed or documented. Perhaps you are a hospital administrator who has data that the majority of patients AD documents are not available in the medical record when needed. Or you are an ethics consultant who has been involved in bedside dilemmas where there are no clear answers regarding patient preferences for treatment, yet numerous legal and ethical implications exist. Your stories and experiences are common. They can be changed by leaders and champions who understand that a different reality can be created and a variety of solutions found to resolve many of these situations. We believe you will find some answers in the Respecting Choices model that originated in the community of La Crosse, Wisconsin, over 20 years ago and is now being replicated in many communities across the United States and in other countries. This chapter begins with a reminder of why healthcare planning is vitally important and why efforts to improve current planning practices are desperately needed. The remainder of the chapter provides a framework for the Respecting Choices ACP model, how it was created, and the key components responsible for the success it has achieved. Specifically, we begin with a definition of the ACP process itself, a concept poorly understood and often misrepresented but one that must be embraced by leaders interested in developing a new approach to planning. Next, we describe the conceptual framework for the development of the ACP process (Part I) and the importance of designing systems (Part II) that provide the underpinnings for the development of our approach. Last, we provide an overview of the four elements necessary to design an effective ACP model, which will set the stage for the remaining content in this manual. 9

16 WHY IS PLANNING IMPORTANT? How and where people die in the United States has changed greatly over the last 30 years due to dramatic developments in medical science and technology and how these innovations have been socially organized and financed. For the first time in human history, there are many instances in which choices must be made about how, when, and where a person dies. Human experience and culture have not fully prepared us for these often complex and stressful choices. The complexity of these end-of-life decisions is driven by many factors. About 80 percent of people die in healthcare facilities, most after experiencing the long trajectory of a chronic life-threatening illness. Nearly half of these people are incapable of participating in their healthcare decisions (Administration on Aging; Field, Cassel, & Institute of Medicine (U.S.). Committee on Care at the End of Life, 1997; L. P. Fried & Guralnik, 1997; Lynn, 2005). When healthcare professionals are uncertain about what decisions to make, the default is to treat. Knowing the patient s goals, values, and preferences about end-of-life care would be extremely helpful to both loved ones and healthcare professionals. As a consequence of these factors, as well as widespread media attention over such cases as Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, adults have been encouraged to formulate and document their preferences for end-of-life care. To support this objective, the federal government passed the Patient Self- Determination Act (PSDA) in 1991, requiring healthcare organizations to ask adult patients if they have an AD upon admission and inform them of their rights to create one. Additionally, the law also requires health organizations to provide staff and community education about ADs. Today, years after the passage of the PSDA, ADs and ACP are widely recognized and accepted as valuable tools to assist in documenting medical preferences for a future point in time, yet their effectiveness in improving end-of-life care or honoring patient preferences is largely unproven and unappreciated (Gage, Khatutsky, Wiener, O'Keeffe, & O'Keeffe, 2006; Jennings, 2005; Wenger, Shugarman, & Wilkinson, 2008). We have always believed the PSDA, though well-intentioned, resulted in a narrow focus on legal rights and the completion of legal documents (e.g., the living will and power of attorney for healthcare). Thus, the PSDA has inadequately (and unfortunately) shaped the development of organizational standards and practices regarding ACP information provided to patients and the quality of interactions they receive from their healthcare professionals. Despite a wide variety of factors that have raised awareness about the importance of planning for future medical care, research on ADs has yielded disappointing results. AD completion rates remain low, although many individuals express interest in completing ADs (Brown, 2003; Hawkins, Ditto, Danks, & Smucker, 2005; Jennings, 2005). Several studies report poor outcomes from efforts to improve AD completion rates, leading some to become disillusioned and skeptical of continued efforts. For example, studies have shown that even when ADs are completed, they are often ineffective in guiding clinical decision making because they are not available, are too ambiguous or generic, or physicians or healthcare agents are unaware of their existence (Fagerlin & Schneider, 2004; Tonelli, 1996; Wu, Lorenz, & Chodosh, 2008). Research also suggests the ineffectiveness of ADs in preventing unwanted life- 10

17 sustaining treatment or in reducing the cost of care at the end of life (Kass-Bartelmes, Hughes, Rutherford, & Boches, 2003; Lorenz et al., 2004; Teno et al., 1997; Teno, 2004). Multiple barriers exist to the completion of ADs and to end-of-life planning in general. Many healthcare professionals remain uncomfortable, unprepared, and unskilled in having end-of-life discussions (Christakis, 1999; Curtis, Patrick, Caldwell, & Collier, 2000; Gorman, Ahern, Wiseman, & Skrobik, 2005; Scherer, Jezewski, Graves, Wu, & Bu, 2006; Yedidia, 2007). Healthcare providers cite a lack of time to invest in such planning discussions, lack of reimbursement, and personal emotional responses as further impediments to engage patients and families in ACP discussions (Legare, Ratte, Gravel, & Graham, 2008; Vieder, Krafchick, Kovach, & Galluzzi, 2002; Weiner & Roth, 2006). Patients also have multiple self-identified barriers that prevent them from engaging in the process of ACP, including personal beliefs, relationship concerns, lack of information, and the perception that the documents are irrelevant (Schickedanz et al., 2009). The format of the AD form itself can be a barrier to completion because most forms are statutory and legalistic, do not assist in promoting discussion about goals and values, and lack specificity regarding important medical decisions. Consequently, patients often are unaware of their options for future care, are inadequately informed about how to complete an AD or feel it is too difficult, and do not engage in a thorough and complete ACP process (Eiser & Weiss, 2001; Kolarik, Arnold, Fischer, & Tulsky, 2002; Sahm, Will, & Hommel, 2005; Silveira, DiPiero, Gerrity, & Feudtner, 2000). While creating effective strategies to engage individuals in ACP activities is challenging, compelling evidence indicates that patients want to be informed, are receptive to healthcare providers initiating planning discussions, desire information about the benefits and burdens of life-sustaining treatment, and gain great benefit from such activities (T. R. Fried & Bradley, 2003; Guadagnoli & Ward, 1998; Jackson, Rolnick, Asche, & Heinrich, 2009; Scherger, 2001; Tierney et al., 2001; Tilden, Tolle, Nelson, & Fields, 2001). For example, in a study of 332 patients with advanced cancer, patients who engaged in end-of-life discussions had earlier hospice referrals, received less aggressive care near death, and had a better quality of life than those who did not participate in such planning discussions (Wright et al., 2008). In contrast, poor communication regarding end-of-life decisions results in negative outcomes, such as patients switching physicians, increased anxiety, and a reported decrease in quality of life (Brody et al., 1989; Lienard et al., 2006; Mead & Bower, 2002; Safran, Montgomery, Chang, Murphy, & Rogers, 2001; Schofield et al., 2003). Concomitant with disappointing outcomes related to end-of-life decision making, a disconcerting body of evidence has emerged on the experience of dying patients and their families (Field et al., 1997; Salmon et al., 2003; Steinhauser et al., 2000; Steinhauser, Clipp et al., 2000; Teno et al., 2004). As life expectancy has increased, so have the multiple side effects of dying. Many people experience undesirable physical symptoms related to their underlying medical condition or treatment consequences. Many will suffer pain, nausea, constipation, breathlessness, and loss of function and independence. Psychologically, many will be anxious, depressed, afraid, sad, and alone. 11

18 Undoubtedly more work and research will be needed to provide evidence that best ACP practices should be integrated into the routines of quality patient care. National initiatives have recommended improvements in end-of-life decision-making processes that highlight the need for patients and their families to be included as active participants in their medical decisions, especially when the benefits and burdens of complex treatment options must be balanced against patients individual goals (Charles, Gafni, & Whelan, 1999; Guadagnoli & Ward, 1998; Robinson & Thomson, 2001). Reuben (2007) summarizes the key principles to improve care of older people with chronic illness as follows: Care must be individualized based on a patient s goals, values, and resources. Care must follow best practices based on current evidence. Teamwork is required to meet the needs of patients rather than focus on physician responsibilities. Care must be coordinated across sites of care. Available resources and the environment in which patients receive care must be assessed. Efforts must be made to include patients as active participants in their care. These principles are echoed by a variety of professional practice groups and healthcare improvement authorities. For example, the National Quality Forum (NQF) has disseminated a consensus project for quality palliative care ( highlighting the need to assist patients in creating timely plans that represent their goals, values, preferences, and needs (Weissman & Meier, 2008). In addition, NQF has published Safe Practices for Better Healthcare ( 2009_Update.aspx), which includes a specific life-sustaining treatment and safe practices, emphasizing the goal of ensuring that patients receive only the life-sustaining treatment they desire (Denham, 2008). The National Priorities Partnership guidelines ( include an emphasis on patient and family engagement to increase opportunities for an informed decision-making process. Systematic improvement in how care is provided for older persons with chronic illness is consistently recommended by the Institute of Medicine (Institute of Medicine. Committee on Quality of Health Care in America, 2001), the Institute for Healthcare Improvement ( and the Institute for Clinical Systems Improvement ( A compelling component to improve end-of-life planning is the emerging recognition that healthcare professionals need education and skills development to be competent in managing the multiple needs of patients and families faced with complex medical decisions, especially as patients approach the last years of life. Weiner notes that Communication is the engine that drives the elucidation and treatment of suffering, a core mission of medicine (Weiner & Roth, 2006, p. 451). This recognition of the role of communication has led to the development of programs to improve end-of-life knowledge for professionals ( and communication skills programs to train professionals to effectively interact with patients and their families struggling with complex treatment decisions ( 12

19 (Fallowfield, Jenkins, Farewell, & Solis-Trapala, 2003; Weiner & Cole, 2004). In addition, several accreditation organizations have integrated interpersonal and communication skills into expected core competencies of professional education ( For example, the Accreditation Council for Graduate Medical Education s Outcome Project has identified interpersonal and communication skills as one of the six general competencies in which residents must demonstrate performance based on standardized outcome data. It is not surprising that attention has turned toward the development and testing of improved models of planning and decision making that will result in more informed choices and increased patient and family satisfaction with the dying experience. Several programs have demonstrated success with a structured and systematic effort to improve end-of-life decision making through ACP interventions (Schwartz, Merriman, Reed, & Hammes, 2004; Stuart, D'Onofrio, Boatman, & Feigelman, 2003; Wagner et al., 2001). For example, a randomized controlled trial of the impact of the implementation of an AD program (e.g., staff, resident, and family education, and document completion) was conducted in six nursing homes in Ontario, Canada. The study demonstrated that residents who completed ADs had fewer hospitalizations and consumed fewer resources than those who did not complete an AD, with no difference in family satisfaction or mortality between the two groups (Molloy et al., 2000). The Respecting Choices model developed through a grassroots community collaboration in La Crosse, Wisconsin is the other notable exception to the reported ineffective AD and ACP strategies of past research efforts. THE LA CROSSE EXPERIENCE In 1991, leaders of the two major health organizations in the La Crosse area collaborated on a project to develop a comprehensive approach to ACP that included community engagement, ACP facilitator skills training, the design of systems to honor patient preferences, and quality improvement. The evidencebased components of this model will be described throughout this manual. The project had a significant impact on end-of-life planning and decision making (Hammes & Rooney, 1998). From April 1995 until March 1996 an extensive, community-wide study was conducted. Data about ADs and end-of-life decisions were collected from all adult deaths (N = 540) that occurred in the community s two hospitals, six nursing homes, and three home health/hospice organizations over an 11- month period. The results show that ADs had been written by 85 percent of adults who died, of these, 96 percent were found in patient medical records, and as death neared, decisions to withhold treatment were made in 98 percent of the cases. Treatment preferences expressed in ADs seemed to be known by family and physician and were typically followed. 13

20 In a repeat study of the impact of the Respecting Choices model of ACP, all adult deaths (N = 400) in La Crosse County from September 2007 to March 2008 were evaluated for evidence of ACP (Hammes, Rooney, & Gundrum, 2010), with the following results: At death, 90 percent of adults had written ADs (prevalence). In 99 percent of cases, the AD was found in the patient s health record (availability). In 67 percent of cases, a Physician Order for Life-sustaining Treatment (POLST) form had been completed. Both prevalence (p =.023) and availability (p <.001) of AD documents showed a significant increase from the 1998 study. These results have been maintained by an ongoing commitment to improvement and provide compelling evidence that successful ACP programs can be created and sustained over time. Since 2000, we have helped other organizations and communities individualize the principles of the Respecting Choices approach to ACP that are reviewed in the remainder of this chapter.- THE DEFINITION OF ADVANCE CARE PLANNING Advance care planning is an organized process of communication to help individuals understand, reflect upon, and discuss goals for future healthcare decisions in the context of their values and beliefs. When this process is done well, it has the power to produce a written plan (i.e., an AD) that accurately represents the individuals preferences and thoroughly prepares others to make healthcare decisions consistent with these preferences. When this process is not done well, it produces written plans that are ambiguous, which leaves loved ones unprepared to make substituted decisions. ACPs and ADs are often incorrectly used interchangeably. In reality, their underlying philosophies are distinctly different in process and outcome. Advance care planning emphasizes the process of communication necessary to assist individuals in making informed decisions about their future medical care, whereas advance directives focus on the outcome of a written document. Respecting Choices has developed strategies that support the definition of ACP, which leads to an AD that more accurately represents individuals goals, values, and beliefs. Embracing this definition will help leaders understand the changes that are needed, and the support that must be provided for successful outcomes to be achieved. The three components of the ACP process (i.e., understanding, reflection, and discussion) are dynamic, interactive, and form the basis for patient-centered ACP discussions. The following summary of each component is taken from the Respecting Choices facilitator manual (Hammes & Briggs, 2007). 14

21 1. UNDERSTANDING Understanding a variety of issues is necessary in order to participate effectively in the ACP process. Initially, individuals need to understand why ACP is important, the components of the planning process, the benefits of planning, and the consequences of not planning. Strategies that engage patients in the benefits of planning and explore their fears and concerns are often more effective than the typical practice of simply informing them that they have a legal right to plan. People also need to understand what they are planning for. This step involves tailoring the discussion to the individual s state of health. A healthy adult, for example, does not need to plan for the same decisions as a patient with end-stage heart failure. This will require people to understand their health condition and to determine whether they need more information. Once people understand their health condition, they need information about the range of choices for future medical care based on the likely trajectory of their illness and the associated benefits and burdens of these choices. Additionally, people must appreciate the dynamic nature of ACP. Health status and personal goals and values may change over time, and preferences frequently need to be revisited. They must learn the value of, and strategies for, talking with loved ones and healthcare providers about their goals for future life-sustaining treatment. 2. REFLECTION An important component of this phase of the ACP process is to help people identify their personal goals, values, and beliefs, and what impact they have on the decision-making process. Effective techniques to engage people in the reflection process include encouraging them to (a) tell their personal stories, (b) explore experiences with loved ones who have been seriously ill and what was learned through these experiences, and (c) describe what living well means. Allowing people to reflect upon such important questions and to verbalize goals, values, and beliefs provides them with a framework for determining future healthcare decisions. It also helps their loved ones become more informed and provides guidance for making substituted decisions in the future, if needed. 3. DISCUSSION Discussion encourages people to communicate with their chosen healthcare agent(s), other loved ones, healthcare providers, and religious or spiritual advisors, among others. An effective ACP process identifies communication channels that need to be opened and offers suggestions for how to initiate discussions. Patients may need assistance formulating questions for their physician regarding a health condition, or about a treatment decision such as cardiopulmonary resuscitation (CPR). Individuals also may need referral to a palliative care specialist regarding pain and symptom management, or to a religious leader regarding the teachings of their tradition. 15

22 Ideally, the ACP discussion leads to the development of a written plan that accurately represents the goals, values, beliefs, and decisions of the patient. CONCEPTUAL FRAMEWORK PART I: UNDERSTANDING THE ADVANCE CARE PLANNING PROCESS The three components (understanding, reflection, and discussion) of the ACP process have evolved from four interrelated theoretical concepts described in the Respecting Choices facilitator manual and summarized below (Hammes & Briggs, 2007): 1. THE DOCTRINE OF INFORMED CONSENT Planning and decision making can be effective only when barriers to understanding, reflection, and discussion are first identified and addressed. Considering ACP as a type of informed consent for medical care (Lidz, Appelbaum, & Meisel, 1988), it follows that removing barriers that interfere with good decisions is an essential first step (Cassell, 1978). For example if a person were in severe pain, a health professional would ideally want to relieve the pain (i.e., remove the barrier) before asking the patient to make important healthcare decisions. Similarly, beliefs, emotions, gaps in knowledge, and prior experiences may impair one s ability to effectively participate in ACP. According to Leventhal s Common- Sense Model, an illness is represented by a set of thoughts people have about their health condition and has five dimensions: identity, cause, timeline, consequences, and curability/controllability (Leventhal & Diefenback, 1991). In the process of providing new information (i.e., ACP), it is first important to assess an individual s representation of their illness, whether medically correct or not. ACP is not simply a matter of giving a person what they need to know (transfer of information from an expert to another person) but a process of exploration that can be achieved only by listening to the individual s unique set of beliefs and circumstances (Delbanco, 1992). If this exploration is not done, individuals in the process may not fully understand (Cassell, 1985; Engelhardt, 1986; Hammes, 2001), and gaps in knowledge, fears, misunderstandings, or other barriers may not be identified and addressed (Lazare, 1987; Quill, 1989). 2. THE ADULT LEARNING PRINCIPLE OF ENGAGEMENT Engagement is one of the foundational principles of adult learning (Redman, 1993). The Respecting Choices ACP approach attempts to engage individuals in several ways: identifying what information a person needs to know; determining what is already known; affirming what is known or learned; and explaining what s in it for the person (e.g., what are the consequences of planning or not planning). The intended outcomes of engagement go well beyond the straightforward act of providing information. Effective personal engagement motivates individuals to take action (e.g., to talk to their loved ones; to understand their health condition; to reflect on goals, values and beliefs; and to make specific decisions). These engagement activities will ultimately result in changing a person s willingness to 16

23 participate in ACP and in creating a more effective written plan. This theoretical underpinning has strong connections to the more modern concepts of motivational interviewing and transtheoretical change (Miller & Rollnick, 2002). Specifically, a study that describes older adults engagement in the various stages of ACP found that patients may participate only in the stage of ACP that is most comfortable to them, such as talking with family, but not completing an AD (Sudore et al., 2008). A follow-up study on the importance of developing strategies to motivate individuals to engage in all phases of ACP identified the need for facilitators to explore and address patients self-identified barriers as a critical step in the engagement process (Schickedanz et al., 2009). 3. THE NARRATIVE APPROACH Planning begins by listening to and exploring the individual s story. The narrative approach is well supported in the literature as a valuable strategy to gain insight into one s own worldview (Dunne, 1965; Dunne, 1967; Dunne, 1973). Respecting Choices advocates the use of narrative to gain insight into individuals goals, values, and beliefs. These insights can have a powerful, positive impact on the understanding needed to make future healthcare decisions and on the motivation to plan. Narratives are also useful to help individuals gain new insights by hearing and exploring their own stories, as well as exploring the archetypical and cultural stories of others. Respecting Choices uses the narrative approach as a driving force in the process that connects the theoretical ideas described in items 1 and 2 above. 4. AN ETHIC OF CARING RELATIONSHIPS Planning is more accurately supported by an ethic of care (Gilligan, 1982) rather than an ethic of rights. While ADs are most often viewed as a way for individuals to exercise the right of self-determination and the right to refuse medical care, the Respecting Choices approach postulates that in daily human experience most people are primarily concerned about the ethical boundaries of their relationships and roles (Pellegrino & Thomasma, 1988; Taylor, 1985). For the daughter of a seriously ill mother, the primary question is not What are my mother s rights? but rather, What does a good daughter do to care for her mother at this moment? or How do I love my mother now? An ethic of caring relationships is integrated into the ACP process in multiple ways. For example, in exploring the choice of the most appropriate healthcare agent, patients are encouraged to think carefully about choosing the person with whom they can openly talk about their goals and values, and to involve those closest to them whom they do not choose. Accordingly, ACP discussions can be a family affair, leading to group discussion and clarification of difficult and emotional issues. Opening these channels of communication can be extremely valuable for patients as well as for healthcare agents who bear the burden of making difficult treatment decisions for a loved one. It is the ethic of caring relationships that is useful when facilitating ACP for patients from different cultures, religions, or ethnic groups. It highlights the need to explore family dynamics, identify fears and concerns, negotiate a 17

24 planning process that is acceptable, provide support to those who have different views, and craft an individualized plan that is respectful of diverse beliefs and values. The interaction among these four theoretical underpinnings forms the conceptual framework upon which Respecting Choices has developed the components of the ACP process and the related facilitation skills. The leaders of the Respecting Choices initiative realize that the ultimate outcome of an ACP program should demonstrate evidence that an individual s goals, values, and decisions are honored at the bedside. Training ACP facilitators or producing educational brochures alone will not be enough to achieve this outcome. Systems need to be designed to ensure patients preferences are honored, and these systems require effective design principles and leadership qualities. CONCEPTUAL FRAMEWORK PART II: DESIGNING SYSTEMS TO HONOR PATIENT PREFERENCES (BUILDING MICROSYSTEMS) In the initial stages of developing the La Crosse ACP community program, leaders made a commitment to, and realized the value of, building a comprehensive, coordinated approach. They envisioned the design of a program that would go beyond the minimum requirements of the Patient Self-Determination Act to promote an informed decision-making process for future medical care throughout the community. They also realized the importance of starting small and building systems that would interact with each other to eventually achieve the ultimate outcome of honoring preferences at the end of life. Conceptually, it is useful to envision an ACP program as a series of microsystems designed to identify and honor a patient s healthcare preferences as a matter of routine, proactive, and preventative care for all adults. A clinical microsystem has many features that shape professional behavior, satisfaction of care, effectiveness, safety, and cost. Microsystems have been constructed within the healthcare system due to the realization that they are the only way to effectively accomplish the work of providing reliable patient care (Nelson, Batalden, Godfrey, & Center for the Evaluative Clinical Sciences at Dartmouth, 2007). Healthcare professionals are intimately familiar with the microsystem concept used to organize a variety of complex components in providing safe and effective patient care. For example, the organization of an advance cardiac life support (ACLS) service within a hospital clearly demonstrates the importance of this design principle. Healthcare professionals who work in hospitals and consumers who watch television medical dramas are familiar with code blues, an emergency that is called when a patient has a cardiopulmonary arrest. This code blue emergency sets in motion a series of microsystems, or procedures to deliver optimal patient care. First, a nurse finds a patient pulseless, initiates basic CPR, and calls for additional assistance. This call may be to an operator or dispatcher using a specified system and providing a location of the arrest. The next system activated is the code team, notified through a paging system or specified team pager. The code team responding to this emergency is a group of highly trained, ACLS-certified health professionals, including physicians, nurses, and respiratory therapists. All code team members know their roles and responsibilities when they promptly arrive at the scene of the 18

25 cardiac arrest. Team members are expected to maintain their skills through a system developed for ongoing certification by ACLS instructors. When they arrive at the scene of the emergency, they expect to find another system of organized and fully stocked supplies, often called a crash cart, that provides the necessary equipment to skillfully perform lifesaving interventions. The activities of every cardiopulmonary arrest are evaluated by a resuscitation committee, which monitors each component of the microsystem (e.g., timeliness of the arrival of the code team, competency of code team members, availability of equipment, adherence to ACLS protocols) for improvement opportunities and to improve and achieve quality outcomes. In order for this ACLS microsystem to work effectively, and for patients to receive optimal resuscitation efforts, each component part must be well organized and coordinated. Imagine what would happen if any part of this system were absent or not functioning properly. For example, what if the paging system failed, or the physician member of the team forgot to wear the code blue pager and didn t arrive at the scene, or the crash cart was not stocked with the necessary ACLS drugs? Any gap in this series of critical components means that the system has a high probability of not working or failing over time; thus, the goals of optimal patient care will not be achieved. Development of an effective ACP program cannot be accomplished without the same, meticulous attention to the microsystem principle of the ACLS analogy. (The ACP goal of knowing and honoring individuals goals, values, and decisions for future medical care cannot be achieved without attention to this basic design principle.) Optimal ACP goals have been unachievable for most healthcare organizations simply because they have not understood the key systems that must be designed, or have not adequately investigated the gaps in their current program. In our assessment of existing ACP programs, we have encountered critical gaps and common omissions. The typical ACP program has largely been designed to meet the minimum regulatory and accreditation standards, which require only that healthcare institutions tell patients about their legal rights to have a statutory AD document and assist patients who are interested in completing a written document. This system has clearly failed because it has been poorly designed and because there has been a lack of understanding that merely completing a legal document will help address the very complicated issue of making medical decisions at some future time. This manual describes systems needed for effective ACP outcomes and offers a variety of strategies for success. As we consult with teams to design more robust ACP programs, three basic requirements emerge: leadership, hardwiring systems into the routines of care, and dedicated human and financial resources. When these basic conditions exist, ACP implementation teams will have the support and tools to be successful. 19

26 BASIC CONDITIONS MUST BE IN PLACE LEADERSHIP IS CRITICAL Representatives of organizations and communities across the United States and other countries have contacted us to learn more about the Respecting Choices model of ACP. They typically face many challenges convincing other stakeholders of the reasons to improve their existing programs. As leaders, however, they share a personal passion to make things better. They can envision a program that is responsive to the planning needs of patients and families, and one that is more satisfying to healthcare professionals. This passion fuels their desire to learn more about the Respecting Choices program, participate in training programs, organize team meetings and consultation assessments, and identify pilot sites for initial implementation, among a host of other activities. Without ongoing leadership support, however, this passion fades, momentum declines, and comprehensive change does not happen. Diffusion of innovation, a longstanding social science theory more recently linked to healthcare, posits that three factors influence the integration of change: (1) perceptions of the change; (2) characteristics of the people who adapt and of those who do not; and (3) contextual issues, such as communication and leadership (Rogers, 1995). In reflecting upon how these factors affect the change process in healthcare, Don Berwick (Berwick, 2003) suggests several rules for leaders to follow. First, leaders must search for best practices and then support the organization s innovators. Leaders must also invest in the early adopters who are willing to test new processes and must fully support pilot project efforts. Next, effective leaders should communicate the experiences of the early adopters through one-on-one social interactions rather than rely on generic communication campaigns, such as s or written reports, to adequately convey support. They must also lead by example and be willing to personally experience the impact of the new processes. Leaders can demonstrate support for development of new ACP programs in the following ways: Legitimize the work and goals of the ACP pilot implementation team by giving them the time to design an effective pilot. Provide for appropriate training of the members of the team in the skills of ACP and their roles and responsibilities. Carve out time in the weekly schedule for ACP facilitators to have regular discussions with their patients or clients. Communicate the purpose of the pilot project in administrative meetings. Give examples of the stories from the ACP facilitators who are learning how to do this new work. Participate in their own ACP process by talking with their chosen healthcare agent and completing a written plan. 20

27 An organizational commitment to the success of the new ACP program must include leadership characteristics that are specific, ongoing, and visible to those champions who are willing to direct the implementation efforts. Effective leaders play a critical role in the dissemination of change, and ineffective leaders can stall implementation completely (Crow, 2006). A LEADERSHIP STORY FROM LA CROSSE One of the most important reasons for the success of the La Crosse community ACP initiative was the intimate involvement of leaders at the highest level of each participating organization from the very beginning. These leaders identified the problem and recognized the consequences of not knowing the wishes of critically ill patients regarding life-sustaining treatment. Accordingly, they supported the creation of a task force to address this issue, with a clear expectation that the newly developed program would result in at least 50 percent of critically ill patients admitted to the hospital having a plan in their medical records. They provided both human and financial resources in the form of designated individuals to lead the initiative and a yearly budget to ensure that the program would be embraced by providers and the community. In return for this support, leadership required semi-annual progress reports and held staff accountable. They sustained this support for at least three years as they worked on strategies to fold the newly developed program responsibilities into the daily work flow of their respective organizations. This level of support has continued by maintaining human resources to manage the program, creating budgets to purchase needed materials and supplies, and measuring quality outcomes that demonstrate success. SYSTEMS MUST BE HARDWIRED One of the core principles necessary for Respecting Choices success, as demonstrated throughout this manual, is the importance of creating systems for a comprehensive ACP program. However, these ACP microsystems must be hardwired into the routines of care to help busy professionals and community leaders do the right thing. The Respecting Choices ACP program has many examples of the impact of weaving this hardwiring principle into practice to ensure that: patients have access to information, physicians initiate ACP discussions, written ADs are completed with fidelity, documents are accessible at the bedside, preferences are converted into medical orders, and plans are transferred with the patient to the next site of care. Studer Group ( an internationally recognized healthcare consultation firm that has assisted thousands of organizations in achieving stellar results, has conceptualized the features of hardwiring excellence. Quint Studer, founder and CEO of Studer Group, describes the healthcare Flywheel that begins with leaders who are passionate and driven by core values of clear purpose, worthwhile work, and making a difference (Studer, 2003). Passion must be fueled by principles (techniques, tools, and behaviors) that are hardwired to create desired actions, and by results (outcomes, data) that will demonstrate the impact of the desired actions. According to Studer, As employees see the results of their initial efforts, the Flywheel turns faster and momentum builds. This passion fuels more results in a success spiral (Studer, 2003, p. 29). 21

28 The importance of hardwiring systems from the initial stages of an ACP initiative cannot be overemphasized. Systems help people do the right thing, even when they have not subscribed to the philosophy behind the proposed change. Small systems must be built and integrated into the routines of practice that will eventually interact with larger systems to produce effective outcomes. Dr. Tim Porter- O Grady, author of many books about healthcare leadership, describes the process this way: Simple systems combine with other simple systems to form more complex systems. Complexity grows incrementally through the interconnecting of smaller, simpler systems (Porter-O'Grady & Malloch, 2003, p. 54). Respecting Choices serves as a model for the key systems that must be developed and hardwired in order for an ACP movement to develop. For example, one of the ultimate goals in designing an ACP program is the ability to honor patient preferences. This is a complex goal that will initially require several smaller systems to be hardwired into practice. Qualified ACP facilitators must be trained and available to provide assistance in helping individuals understand their options and articulate their goals for future medical care. A referral system must be designed to connect individuals with these qualified facilitators. An electronic referral system makes this referral process more efficient. AD documents must be created that provide the opportunity to express an individual s goals and decisions. Typical statutory forms are not adequate in providing this opportunity and document revision is often one system that must be revised. Once a document is created that accurately represents an individual s goals and decisions, it must be stored in a designated location and made accessible at the bedside. Therefore, a reliable medical storage and retrieval system must be designed that will make plans available and accessible when substitute decisions are needed. Without each of these smaller systems, the ultimate goal of honoring patient preferences cannot be achieved. A HARDWIRING STORY FROM LA CROSSE The story starts with a clinical frustration. House staff often complained about admissions from area nursing homes late at night with no accompanying information about the patient s code status. While it was easy to admit the patient as a full code, house staff were concerned about the low chance of frail patients with multiple chronic conditions surviving a cardiac arrest. First, house staff were urged to discuss the issue with the family, but this was often impossible and sometimes not well received under the stress of the admission. Next, they were urged to discuss these issues near discharge and document decisions in the discharge summary for future reference. This had no impact, and the situation persisted. After repeated attempts at focused teaching and stressing the current system, an unexpected event occurred. Dr. Hammes was answering a page in the hospital when he noticed a discharge summary checklist posted at the telephones used for dictation for patients moving to local nursing homes. As he reviewed the checklist, he noted the absence of a prompt to alert house staff to dictate information about code status or any plans for future medical decisions. He requested that an item addressing code status be added to the checklist. Within two weeks, new discharge summary checklists for nursing home residents were posted by all telephones used for dictation. This new system created a shift in staff behavior. It was now their responsibility to document code status upon discharge, which 22

29 first required them to have a discussion with the patient (or healthcare agent) regarding preferences for attempting CPR. This simple change led to routine documentation of code status. More importantly, it started to shift the frequency and quality of discussion about attempting CPR. UPFRONT COMMITMENT TO HUMAN AND FINANCIAL RESOURCES The work of ACP, similar to the ACLS system analogy, will require dedicated people, time, and money to demonstrate initial success and long-term sustainability. This reality must be confronted from the initial phases of investigation, through redesigning of an ACP program, and on to long-term and systematic implementation. One of the common gaps we encounter when conducting on-site assessments or presenting workshops is full commitment to the resources needed to move from the status quo to achieving new and improved outcomes. We are frequently questioned about the time and resources it takes to do the work of ACP. Who will become facilitators? Whose responsibility should this be? How will busy professionals find the time to add ACP to current roles and responsibilities? While these questions have no easy or standard answers, leaders must commit to creating solutions and to integrating the goals of ACP into the mission of the organization. Too often we find that nurses or social workers who become trained in the skills of ACP facilitation are excited about their newfound abilities to better assist patients and families, yet they become disillusioned when their direct supervisors do not validate this work by integrating it into their job descriptions or support them in carving out adequate and consistent time to complete ACP discussions. Leaders must invest real time, resources, and money to allow success to be realized and momentum to slowly move forward (Porter-O'Grady & Malloch, 2003). Without upfront commitment to support the ongoing efforts of program implementation, the passion for continued work often fades, and those who once championed the change become tired, skeptical, and unwilling to go it alone. Indeed, research has shown that attempts to implement change often fail because leaders do not appreciate the impact on staff, do not invest in the execution of plans, or do not evaluate the impact of the plan on strategic goals (Mankins & Steele, 2005; Sirkin, Keenan, & Jackson, 2005). In summary, each organization or community interested in implementing an effective ACP program should assess if the basic conditions (i.e., leadership, ability to hardwire systems, and human and financial resources) exist or if they can be created. A critical evaluation of whether these conditions can be addressed in the early stages of investigation is important in determining if the necessary level of commitment exists. When these basic conditions exist, ACP teams can focus on the design of four key elements in the development of a comprehensive and effective program. The remainder of this chapter provides an overview of these four elements, which are more thoroughly described in Chapters 4 through 7. 23

30 DESIGN ELEMENTS: OVERVIEW OF THE FOUR ELEMENTS OF AN EFFECTIVE ACP PROGRAM The four key elements in designing an effective Respecting Choices ACP program are 1. Systems design 2. ACP facilitation skills education and training 3. Community education and engagement 4. Quality improvement Successful ACP implementation requires that program planners develop specific strategies that address each element. No magic bullet achieves success no quick fixes result in quality outcomes. But our method has been repeatedly tested in large and small communities, organizations, and coalitions. It will work for you, too. Systems Design ACP Facilitation Skills Education Honoring Individual Preferences for Future Medical Care Community Education and Engagement Quality Improvement 24

31 KEY ELEMENT #1: SYSTEMS DESIGN As previously described, a sustainable ACP program hinges on the development of an organized system. ACP systems help providers do the right thing and ultimately ensure that patients preferences for future medical care are honored. When ACP systems are not created and integrated into the routines of patient care, multiple consequences are possible: Well-intentioned professionals may assist individuals in completing written AD documents, then fail to file them in the patient s medical record. An individual takes the time to have an AD drawn up by an attorney, but the document never reaches the physician office for a follow-up discussion. AD documents may be created that include ambiguous language, such as Don t put me on a breathing machine, leaving family and physicians confused about the meaning of that statement. An AD document created by an individual may not be accepted by a hospital because it does not comply with the accepted format for that organization. When systems are not created to honor preferences for future medical care, we fail at our efforts to assist patients with their ACP needs and may communicate a false sense of security for patients who wish to control their future medical treatment. When embarking on the development of an ACP program, it is important to focus on several key components that will guide initial implementation and early success. AD DOCUMENT An effective system should include a uniform AD document that meets statutory or regulatory requirements. In addition, the document should also provide opportunities for an individual to express goals and values about life-sustaining treatment when a cognitive recovery is doubtful. Ideally, the document should be adopted by healthcare organizations, community groups, and law firms, among others, to provide consistency for consumers and reliability for professionals. ADVANCE CARE PLANNING TEAM AND REFERRAL SYSTEM An ACP team must be identified and a corresponding referral system created to provide individuals with access to qualified facilitators who can assist them with their unique planning needs. This referral system may include multiple sites for assistance, such as community groups, faith communities, attorney offices, and assisted living facilities. STORAGE AND RETRIEVAL SYSTEM A medical records system must be developed for entering, storing, retrieving, and transferring documents. This element ensures that individuals documents will be reviewed for accuracy and 25

32 thoroughness, that preferences will be accessible when needed and reviewed at regular and appropriate intervals, and that documents will be transferred with patients when moved to a different healthcare facility. Attention to designing these key components of the system, that is, a useful AD document, an ACP team and referral mechanism, and a medical records storage and retrieval system, will increase the likelihood that a patient s preferences will be thoroughly documented, available to guide decision making when needed, and honored as appropriate. KEY ELEMENT #2: ACP FACILITATION SKILLS EDUCATION AND TRAINING Effective ACP requires communication skills not typically integrated into the training of most healthcare providers, clergy, community leaders, or others who provide assistance in planning for future healthcare decisions. Unfortunately, most providers have received AD education focused on understanding terminology (e.g., living will and power of attorney) and the completion of a legal document, but minimal training on the interview and communication techniques that are required to assist patients in making informed decisions decisions that their loved ones will understand and be prepared to honor. Respectful ACP is patient-centered, individualized, appropriately staged and timed, and ongoing. ACP requires an assessment of the patients readiness to learn, medical condition, stage of chronic illness, and quality of life. Healthcare decision making for an individual who has been living for years with chronic illness and approaching the last few years of life requires a different level of facilitation than decision making for a healthy adult. When these principles are neglected, AD documents can be completed, but are often not helpful to healthcare agents, family, or healthcare providers when specific treatment decisions are required and the patient can no longer communicate. A STAGED APPROACH TO ADVANCE CARE PLANNING To address the changing needs of patients over the course of their lives, Respecting Choices has developed a staged-approach model to ACP called First Steps, Next Steps, and Last Steps. This approach is based on an individual s stage of health, readiness to learn, and venue of care. This patientcentered and practical approach to planning also makes it possible to train professionals and others in the requisite skills needed to address the planning needs of the population they serve, and make referrals to others when planning becomes more complex and specific. First Steps ACP is appropriate for all adults, but ideally is initiated as a routine of care for those over the age of 55. The goals of this stage of planning are to motivate individuals to participate; select a qualified healthcare agent(s) appointed in a power of attorney for healthcare document; and provide instructions for goals of care in the event of a permanent, severe neurologic injury. Next Steps ACP is initiated by healthcare providers caring for patients with chronic, progressive illness who are experiencing a decline in function, complications, or more frequent hospitalizations. The goal of this stage of ACP is to engage patients in 26

33 understanding their illness progression and related treatment options, including benefits and burdens of life-sustaining treatment, and to prepare healthcare agent(s) to make decisions about goals of care in selected bad outcome scenarios. Last Steps ACP is initiated as a component of quality end-of-life care for frail elders and those whose death in the next 12 months would not be a surprise. The goals of this stage of planning are to assist individuals or their designated healthcare agents to make timely, proactive, and specific end-of-life decisions (e.g., cardiopulmonary resuscitation, airway management, artificial nutrition, hospitalization) and convert these decisions into medical orders that can be followed throughout the healthcare continuum. Accordingly, this staged approach to planning makes it possible and necessary to design individualized approaches to community education and engagement. One-time educational events are often ineffective because they tend to focus on the completion of an AD document and typically do not include follow-up activities to support the ongoing process of ACP. To motivate people to participate in ACP, education needs to do more than provide information about patient rights (e.g., the right to make healthcare decisions) or explanations about the types of AD documents (e.g., living wills and powers of attorney for healthcare). It must be designed with consideration of a host of variables that influence motivation to participate, including readiness to learn, culture, religion, and stage of health. The standardized Respecting Choices ACP education and training curriculum has been offered for over a decade to thousands of individuals across the United States and in other countries. It defines facilitation skills for different patient populations, different venues, and for varying levels of experience and background. Since an effective ACP system requires the development of a team approach to providing assistance, Respecting Choices has developed different levels of education and training to provide the team with appropriate skill sets. Programs are geared toward those who will be providing individualized ACP assistance (e.g., ACP facilitators); those who will be making referrals to ACP facilitators (e.g., physicians); and those who will be providing information and education (e.g., community volunteers or leaders). Respecting Choices combines a unique online learning curriculum with classroom activities. This blended learning approach provides participants with a self-paced modality to learn the basics of ACP followed by a host of classroom activities that focus on skill identification, practice, and achieving a minimum level of competency. KEY ELEMENT #3: COMMUNITY EDUCATION AND ENGAGEMENT This design element is focused on the development of educational materials and engagement strategies that motivate individuals to participate in planning activities. In our experience, many organizations have limited ACP education to the development of brochures and booklets that focus on the completion of AD documents and the associated legal requirements. Or, they have a few educational programs for the community rather than a sustained campaign of engagement. Additionally, healthcare organizations and groups within a community typically do not coordinate their education or engagement efforts, often 27

34 preferring to develop their own specific materials and documents. This uncoordinated approach often leads to confusion for individuals living in the community who seek clarity and assistance for ACP. While educational materials that provide information and advice are important, engagement strategies are critical for motivating people to participate in ACP. Community engagement involves exposing individuals to consistent, understandable, and repetitive messages about the importance of planning for all adults. Healthcare organizations are encouraged to adopt a common set of materials that can be used throughout the community by providers, community groups, attorneys, and others. Community engagement campaigns must include materials and strategies that tell stories, explore experiences, and help individuals articulate their goals and values. Ideally, this exposure occurs through normal daily interactions with religious organizations, ethnic and cultural communities, local advocacy groups, and organizations that provide healthcare. KEY ELEMENT #4: QUALITY IMPROVEMENT The comprehensive ACP system will require ongoing monitoring for improvement opportunities for a variety of reasons. First, the initial systems that are designed, such as medical records storage and retrieval, may not be perfect or accomplish the intended goals. The system may need to be modified and improved sooner than expected. Next, as new solutions emerge, the system will need to be redesigned, such as with the integration of electronic medical records and the related ACP application requirements. Quality improvement data will identify the gaps in the system that may occur over time. For example, staff turnover may result in a lack of experience with, or understanding of, previously defined ACP responsibilities. Quality improvement data also help sustain ACP initiatives by demonstrating how well the designed systems are working, such as the high rate of availability of written documents in the electronic medical record at the time of patient admission to a healthcare facility. These demonstrated successes can fuel the passion of those who are leading the implementation stages and engage others who have been less enthusiastic about the ACP program being designed. Leaders of an ACP initiative should think broadly and boldly about what can be achieved with the investment they are making and develop and measure goals accordingly. A commitment to quality improvement requires resources for data collection and analysis, organized policies and processes that need to be monitored, a quality improvement team to set goals and action plans, and organizational leaders to invest in system changes as necessary. We have observed many gaps in the level of commitment to quality improvement. For example, some leaders neglect to collect data, which leaves them without a reliable means of understanding what is working and why. Or they collect data on only one element of change, which can lead to a false sense of implementation success. In addition, there is a tendency to measure outcomes that are too narrow (e.g., the completion of written documents) and that do not, in and of themselves, reflect the quality of the ACP discussion or of informed decision making. 28

35 National organizations committed to improving end-of-life care are recommending the integration of specific ACP goals into quality programs. For example, the National Quality Forum s Framework and Preferred Practices lists five ACP outcomes as important: (1) documentation of a designated surrogate, (2) documentation of goals of care and treatment preferences at regular intervals, (3) conversion of treatment goals into medical orders, (4) insuring ADs are available across settings of care, and (5) promoting community collaborations to complete ADs for all individuals ( With our commitment to improving the outcomes of systemic implementation of an ACP program, Respecting Choices has developed a framework called The Five Promises to assist in identifying and measuring ACP outcomes and to appreciate the comprehensive impact this type of program should have on patient care. These are the Five Promises of an effective ACP program: The Five Promises 1. We will initiate the conversation with our patient about their preferences for future medical care. 2. We will provide assistance with ACP to those patients who express an interest in addressing these issues. 3. We will make sure plans are clear when the planning process has reached an end. 4. We will maintain and retrieve these plans whenever and wherever they are needed. 5. We will appropriately follow these plans when the patients can no longer participate in their own decision making. In addition, we have identified several quality indicators associated with each promise to assist organizations in understanding the inherent meaning of each promise. The Five Promises framework highlights the need to establish bold outcomes that can be achieved over time as a component of a comprehensive, long-range implementation plan. Chapter 6 will describe in more detail the essence of The Five Promises, strategies for measurement, and quality improvement examples. In the initial stages of program implementation, it is important to focus on short-term outcomes that can be accomplished within four to eight months. These outcomes include: 29

36 process measures, such as the development of an ACP team referral mechanism; a document storage and retrieval system; improved patient educational materials; outcomes that measure patient and family satisfaction with the ACP discussion; and the number of AD documents completed. Over time, outcomes can be measured that demonstrate the impact of planning on place of death, satisfaction with the dying experience, costs of care, and access to resources that improve the dying experience (e.g., hospice and palliative care). We believe the following specific outcomes can be expected with a systemic and focused initiative over approximately a three-year period: increased amount of written ADs at the time of death to 75 percent, increased availability of ADs in the medical record of the healthcare organization caring for the decedent to 96 percent, increased inclusion of an appointed surrogate in the ADs to 60 percent, reduced number of hospital deaths by 10 percent of baseline, increased number of hospice admissions by 10 percent over baseline, increased median length of admission by 10 percent over baseline, increased transfer of patients written preferences to appropriate medical orders by 90 percent, increased family reports of a discussion with the deceased family member about plans for medical care to 90 percent, and achieved high patient satisfaction through the ACP discussion. CONCLUSION Now that you have begun your journey understanding the components of designing an effective ACP program, you will find more detailed assistance throughout this manual. We hope this chapter has provided the necessary foundation to understand why planning is important and why the design of a comprehensive program is worth the investment, despite the challenges and barriers you may encounter. Through our work with organizational leaders, we have identified the important basic conditions that must exist to support the initial implementation efforts and the key elements that must be designed for quality outcomes to be achieved. Respecting Choices has a long history of commitment to research and quality improvement that has allowed us to test our ideas, systems, and strategies in the living laboratory of our own organization and community prior to making recommendations to other teams. We have succeeded in developing evidence-based practice guidelines that are responsive to cultural, religious, and personal beliefs, and that can be successfully individualized in various settings and patient populations. Most importantly, we have evidence that a comprehensive ACP program makes a difference for patients, families, and healthcare professionals. 30

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39 Miller, W. R., & Rollnick, S. (2002). Motivational interviewing: Preparing people for change. New York: Guilford Press. Molloy, D. W., Guyatt, G. H., Russo, R., Goeree, R., O'Brien, B. J., Bedard, M., et al. (2000). Systematic implementation of an AD program in nursing homes: A randomized controlled trial. JAMA: The Journal of the American Medical Association, 283(11), Nelson, E. C., Batalden, P. B., Godfrey, M. M. & Center for the Evaluative Clinical Sciences at Dartmouth. (2007). Quality by design: A clinical microsystems approach. Pellegrino, E. D., & Thomasma, D. C. (1988). For the patient's good: The restoration of beneficence in health care. New York: Oxford University Press. Porter-O'Grady, T., & Malloch, K. (2003). Quantum leadership: A textbook of new leadership. Sudbury, MA: Jones and Bartlett. Quill, T. E. (1989). Recognizing and adjusting to barriers in doctor-patient communication. Annals of Internal Medicine, 111(1), Redman, B. K. (1993). The process of patient education. St. Louis: Mosby-Year Book. Reuben, D. B. (2007). Better care for older people with chronic diseases: An emerging vision. JAMA: The Journal of the American Medical Association, 298(22), Robinson, A., & Thomson, R. (2001). Variability in patient preferences for participating in medical decision making: Implication for the use of decision support tools. Quality in Health Care: QHC, 10 Suppl 1, i34-8. Rogers, E. M. (1995). Diffusion of innovations. New York: Free Press. Safran, D. G., Montgomery, J. E., Chang, H., Murphy, J., & Rogers, W. H. (2001). Switching doctors: Predictors of voluntary disenrollment from a primary physician's practice. The Journal of Family Practice, 50(2), Sahm, S., Will, R., & Hommel, G. (2005). Attitudes towards and barriers to writing ADs amongst cancer patients, healthy controls, and medical staff. Journal of Medical Ethics, 31(8), Salmon, J., Deming, A. M., Kwak, J., Acquaviva, K. D., Brandt, K. & Egan, K. A. (2003). Caregiving at life's end: The national needs assessment and implications for hospice practice. Retrieved 12/3, 2009, from Scherer, Y., Jezewski, M. A., Graves, B., Wu, Y. W., & Bu, X. (2006). ADs and end-of-life decision making: Survey of critical care nurses' knowledge, attitude, and experience. Critical Care Nurse, 26(4), Scherger, J. E. (2001). What patients want. The Journal of Family Practice, 50(2), 137. Schickedanz, A. D., Schillinger, D., Landefeld, C. S., Knight, S. J., Williams, B. A., & Sudore, R. L. (2009). A clinical framework for improving the advance care planning process: Start with patients' self-identified barriers. Journal of the American Geriatrics Society, 57(1), Schofield, P. E., Butow, P. N., Thompson, J. F., Tattersall, M. H., Beeney, L. J., & Dunn, S. M. (2003). Psychological responses of patients receiving a diagnosis of cancer. Annals of Oncology: Official Journal of the European Society for Medical Oncology / ESMO, 14(1), Schwartz, C. E., Merriman, M. P., Reed, G. W., & Hammes, B. J. (2004). Measuring patient treatment preferences in end-of-life care research: Applications for advance care planning interventions and response shift research. Journal of Palliative Medicine, 7(2), Silveira, M. J., DiPiero, A., Gerrity, M. S., & Feudtner, C. (2000). Patients' knowledge of options at the end of life: Ignorance in the face of death. JAMA: The Journal of the American Medical Association, 284(19), Sirkin, H. L., Keenan, P., & Jackson, A. (2005). The hard side of change management. Harvard Business Review, 83(10),108-18, 158. Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L., & Tulsky, J. A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA: The Journal of the American Medical Association, 284(19), Steinhauser, K. E., Clipp, E. C., McNeilly, M., Christakis, N. A., McIntyre, L. M., & Tulsky, J. A. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10),

40 Stuart, B., D'Onofrio, C. N., Boatman, S., & Feigelman, G. (2003). CHOICES: Promoting early access to end-of-life care through home-based transition management. Journal of Palliative Medicine, 6(4), Studer, Q. (2003). Hardwiring excellence: Purpose, worthwhile work, and making a difference. Gulf Breeze, FL: Fire Starter Publishing. Sudore, R. L., Schickedanz, A. D., Landefeld, C. S., Williams, B. A., Lindquist, K., Pantilat, S. Z., et al. (2008). Engagement in multiple steps of the advance care planning process: A descriptive study of diverse older adults. Journal of the American Geriatrics Society, 56(6), Taylor, S. G. (1985). Rights and responsibilities: Nurse-patient relationships. Image--the Journal of Nursing Scholarship, 17(1), Teno, J. M. (2004). ADs: Time to move on. Annals of Internal Medicine, 141(2), Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., et al. (2004). Family perspectives on end-of-life care at the last place of care. JAMA: The Journal of the American Medical Association, 291(1), Teno, J. M., Licks, S., Lynn, J., Wenger, N., Connors, A. F.,Jr, Phillips, R. S., et al. (1997). Do ADs provide instructions that direct care? SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Geriatrics Society, 45(4), Tierney, W. M., Dexter, P. R., Gramelspacher, G. P., Perkins, A. J., Zhou, X. H., & Wolinsky, F. D. (2001). The effect of discussions about ADs on patients' satisfaction with primary care. Journal of General Internal Medicine, 16(1), Tilden, V. P., Tolle, S. W., Nelson, C. A., & Fields, J. (2001). Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nursing Research, 50(2), Tonelli, M. R. (1996). Pulling the plug on living wills. A critical analysis of ADs. Chest, 110(3), Vieder, J. N., Krafchick, M. A., Kovach, A. C., & Galluzzi, K. E. (2002). Physician-patient interaction: What do elders want? The Journal of the American Osteopathic Association, 102(2), Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs (Project Hope), 20(6), Weiner, J. S., & Cole, S. A. (2004). Three principles to improve clinician communication for advance care planning: Overcoming emotional, cognitive, and skill barriers. Journal of Palliative Medicine, 7(6), Weiner, J. S., & Roth, J. (2006). Avoiding iatrogenic harm to patient and family while discussing goals of care near the end of life. Journal of Palliative Medicine, 9(2), Weissman, D. E., & Meier, D. E. (2008). Operational features for hospital palliative care programs: Consensus recommendations. Journal of Palliative Medicine, 11(9), Wenger, N., Shugarman, L. R. & Wilkinson, A. (2008). ADs and advance care planning: Report to Congress. Retrieved 12/3, 2009, from Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA: The Journal of the American Medical Association, 300(14), Wu, P., Lorenz, K. A., & Chodosh, J. (2008). Advance care planning among the oldest old. Journal of Palliative Medicine, 11(2), Yedidia, M. J. (2007). Transforming doctor-patient relationships to promote patient-centered care: Lessons from palliative care. Journal of Pain and Symptom Management, 33(1),

41 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G CHAPTER 2 BUILDING YOUR ACP PROGRAM KEY ELEMENT #1: SYSTEMS DESIGN 35

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43 CHAPTER 2 BUILDING YOUR ACP PROGRAM KEY ELEMENT #1: SYSTEMS DESIGN INTRODUCTION Development of several key systems is critical for professionals to provide consistent and reliable ACP services. If these systems are designed and integrated early in the development of an ACP program, there will be a greater chance of success, increased professional satisfaction, fewer missed opportunities, and earlier achieved outcomes. These initial systems may not be perfect, but they will provide the necessary structure and tools to allow the program to move forward, and will need to be monitored for improvement opportunities. While there are many systems that can be helpful to your ACP initiative, three key systems will be described: the AD document, medical records storage and retrieval, and ACP team and referral mechanism. THE ADVANCE DIRECTIVE DOCUMENT Investing in the creation of an improved advance directive (AD) document will promote the following outcomes: a standardized form to record an individual s decisions for future medical care that is clear, complete, and accurate; easy-to-understand completion instructions and guidance; discussion about goals, values, and beliefs for relevant, future medical care; and access to clinical decision making as needed. Unfortunately, many existing AD documents do not result in these outcomes because of their design and clinical ineffectiveness. Research has indicated that in most places, completion of an AD does not translate into relevant medical orders consistent with patients preferences and assists with end-of-life decision making less than 50 percent of the time (Kass-Bartelmes, Hughes, Rutherford, & Boches, 2003; J. Teno et al., 1997; J. M. Teno et al., 1994; J. M. Teno et al., 1997; J. M. Teno, Stevens, Spernak, & Lynn, 1998). The legalistic construction of most AD documents and the inability to communicate specific treatment decisions often result in vague or incomplete instructions that are not useful to guide clinical decision making (McAuley & Travis, 2003; J. M. Teno et al., 1997). Furthermore, even when ADs are reviewed, errors in interpretation are commonplace and include physician errors of under-treatment and surrogate errors of over-treatment (Coppola, Ditto, Danks, & Smucker, 2001; Ditto et al., 2001; Hardin & Yusufaly, 2004; Uhlmann, Pearlman, & Cain, 1988). 37

44 Most state statutes provide two options for organizations that want to create an AD: a template for a basic AD that meets all statutory requirements, or freedom to create a more user-friendly document. Some corporate attorneys and others assume that the statutory form is the safer, less risky approach. We disagree. When carefully constructed, both documents provide the necessary protections for treating physicians and organizations; however, a tailored ACP document has several advantages over the statutory form. It can lead to a greater prevalence of use, provide more specific guidance for surrogates to make substituted decisions, and clearly articulate a person s goals, values, and beliefs. These improved outcomes more than offset any perceived risks of adopting an alternative to the statutory form. End-of-life decisions have not resulted in legal actions against physicians or healthcare organizations. Therefore, presumed protections offered by statutory documents have little, if any, value. Overall, any clear and voluntary documentation (statutory or tailored) of a competent patient s preferences is far better legally and ethically than guessing or using substituted judgment. ANALYZING THE AD DOCUMENT Construction and implementation of an effective AD document involves: analysis of the current documents used, understanding of the essential design elements of an effective AD document, and willingness to collaborate with healthcare leaders in the community regarding adoption of a universal document. Many communities use a variety of AD documents (e.g., statutory, Internet, and organization-specific forms), which interferes with effective and efficient ACP programs. Some documents may not meet the minimal statutory or regulatory requirements, and others may include restrictive language that unintentionally limits the authority of the healthcare agent. Additionally, multiple documents make it difficult for healthcare professionals to reliably and consistently interpret the AD information, leading to frustration in the clinical utilization of written plans. Consumers also become confused and disillusioned when they complete documents that are not accepted by a healthcare organization or do not serve the function of expressing their intentions. It is important for the AD leadership team to investigate the current forms that are being used, the organizational policies regarding what types of documents are accepted, and corresponding statutory or regulatory guidelines. The leadership team can also gain further insight by talking to healthcare providers about their observations on the current ACP practice, the utility of existing documents, and related concerns. 38

45 ESSENTIAL DESIGN ELEMENTS OF AN EFFECTIVE AD DOCUMENT Understanding the pitfalls of the existing AD documents used in your organization or community will provide some impetus for redesigning an existing document or adopting an alternative one. There are important design elements to consider when adopting or revising a new AD document. A summary of these design elements are included in Appendix 1, page. 55. Early in the development of the La Crosse AD initiative, leaders decided that the existing AD document (a statutory form) was inadequate. It was written in legalistic and confusing language, was poorly formatted, and, most importantly, did little to stimulate discussion and exploration about goals of care. The creation of a new document achieved the following goals: (1) compliance with minimum legal requirements; (2) an engaging format; (3) inclusion of instructions about key ACP principles; and (4) stimulating understanding of and reflection on goals of care for a severe neurologic injury where a full cognitive recovery was in doubt. The La Crosse Power of Attorney for Healthcare (POAHC) document can be found in Appendix 2, pages COMPLY WITH REQUIREMENTS An AD document must comply with statutory or regulatory requirements such as required language (e.g., notices), authority granted to substitute decision makers, signatures, and witnessing or notarization criteria. While these types of requirements are minimal, they must be understood and approved by legal counsel. Unfortunately, some organizations are forced to use a document that meets these legal or regulatory requirements, yet is inadequate in assisting individuals in making choices about their future healthcare choices. FEATURE AN ENGAGING FORMAT An AD document should have an attractive layout that includes attention to language, font size, organization, and instructions. The La Crosse AD document includes a cover page that documents the patient s name, date-of-birth, and the names of people to whom copies have been given. This recordkeeping feature has proven useful in distinguishing between patients with similar last names and in reminding patients as to whom they have provided copies. INCLUDE KEY INSTRUCTIONS FOR BASIC PLANNING An AD document should include content that supports the ACP process of understanding, reflection, and discussion and assist in the documentation of key goals of care for all adults doing basic planning. As an example, the La Crosse AD includes instructions throughout the document that guide patients to think about the important components of the ACP process. It includes a brief narrative that emphasizes discussing goals, values, and beliefs with a chosen substitute decision maker, and provides suggestions for choosing such a person (e.g., willing and able to accept the responsibilities, to discuss preferences and goals, to follow patient s wishes, and to make decisions under stressful situations). These types of instructions stimulate discussion and assist the individual in asking follow-up questions or seeking additional assistance. 39

46 PROVIDE A SCENARIO ON GOALS OF CARE FOR SEVERE NEUROLOGIC INJURY The La Crosse document (e.g., Statement of Desires, Special Provisions, or Limitations) promotes dialogue between patient and surrogate about goals of care and treatment preferences if a severe neurologic injury occurs and a full cognitive recovery is unlikely. For example, patients are asked to consider the following: If I reach a point where it is reasonably certain that I will not recover my ability to know who I am or where I am, I want to stop or withhold all treatments that might be used to prolong my life. Not knowing who I am or where I am is a neurologic values threshold for life-sustaining treatment, meaning it could apply to any adult at any point in time. It does not require individuals to imagine some hypothetical condition (e.g., coma or heart failure) at some hypothetical time. In fact, such neurological injuries have been the core issue for the most widely publicized end-of-life scenarios in the United States: Nancy Cruzan and Terri Schiavo. Both situations resulted in conflict and burden for the families. In La Crosse, we have used this values threshold statement for over 16 years. We find that it consistently engages even healthy adults in describing their goals for life-sustaining treatment and provides guidance for surrogates in making future healthcare decisions. Other components of this section may include special instructions for organ and tissue donation, and religious beliefs or traditions. ADOPTING A UNIVERSAL AD DOCUMENT Endorsement of a well-designed AD document by organizations and communities in a geographic region can yield many positive results. A community or regional document can assist in providing consistent, common, and repetitive messages about ACP; educate the public in a uniform and less confusing way; improve acceptance from skeptical healthcare providers and increase confidence in the utility of such plans; and assist in the training of ACP facilitators who learn to use the document as a tool to stimulate discussion and provide individualized assistance; and Respecting Choices recommends the completion of a power of attorney for health care (POAHC)-type document that allows an individual to legally appoint another individual to make future healthcare decisions and is consistent with statutory or regulatory requirements. In multiple consultations throughout the country, Respecting Choices faculty has observed resistance to universal endorsement of a common document; yet, in most cases, such a document increases community collaboration and communication regarding patient healthcare preferences. The AD leadership team needs to investigate the barriers to collaboration and the myths or misunderstandings in order to negotiate a solution acceptable to all stakeholders. 40

47 A STORY OF COLLABORATION IN THE MINNEAPOLIS METROPOLITAN AREA In 2008, under the direction of the Twin Cities Medical Society, leaders sponsored a community-wide initiative to replicate the Respecting Choices ACP model in the Twin Cities metropolitan area. Members of over 40 area organizations convened to learn about this ACP model and to determine their commitment to collaboration. Further endorsement was gained from senior leadership of nearly every metro area health system. This group agreed (1) not to compete on advance care planning, (2) to collaborate in the development of shared materials, and (3) to devote resources to promote the initiative. Calling their initiative Honoring Choices Minnesota, they embarked on an investigation into existing AD documents used in the metro area. With most organizational leaders dissatisfied with the effectiveness of their current AD documents, they were willing to collaborate. One of the early accomplishments of this initiative was to provide guidance in the development of an improved AD document that was adopted by all area healthcare systems. It was agreed to promote the distribution of this improved AD document and to integrate it as a standard tool for educating ACP facilitators and others responsible for assisting individuals with the completion of a written plan. A process of ongoing evaluation during implementation of this new document provided for improvements as needed. A word of caution: a standardized AD document may not be the preferred document or communication strategy for all individuals. In certain situations, a standardized document may pose a barrier to ACP discussions and planning. We recommend that organizations use alternative approaches when needed, such as a letter to a physician or an ACP narrative note posted in a reliable part of the medical record. Both would provide evidence of a patient s preferences for future medical care. MEDICAL RECORDS STORAGE AND RETRIEVAL SYSTEM A critical component of an ACP program is a reliable medical records storage and retrieval system the ability to know and to honor patient s preferences. The related investments made to design an improved AD document or train ACP facilitators will result in frustration and broken promises if these well-conceived written plans are not available when needed. The inaccessibility of completed documents is a common gap we identify in virtually all of the healthcare organizations we work with. Several studies have reported the problems related to inaccessibility of completed ADs in the patient s medical record, lack of awareness of such documents by physicians, and inaccessibility of documents upon transfer (Morrison, Olson, Mertz, & Meier, 1995; J. M. Teno et al., 1997; Virmani, Schneiderman, & Kaplan, 1994). An effective medical records storage and retrieval system must include reliable access to a patient s written plan for future healthcare encounters, a mechanism for regular review and update to written plans as a patient s goals and decisions change over time, interfacility communication about a patient s preferences for future medical care, and a mechanism for evaluating compliance with patient s written preferences. 41

48 Designing an effective and efficient medical records storage and retrieval system, especially with the integration of electronic applications, is challenging but worthwhile. The emergence of health information technology is expected to provide exceptional opportunities to stimulate ACP discussions, AD completion, document update and review, and increase the accessibility of written plans across sites of healthcare (Wenger, Shugarman, & Wilkinson, 2008). The design should include guidelines for review of documents before they are entered, guidelines for paper and electronic storage, strategies for review and update, and recommendations for transferring documents to other sites of care. A summary of the design elements for a medical records storage and retrieval system is included in Appendix 3, page 69. REVIEW OF AD DOCUMENTS AD documents are sometimes completed by people without the assistance of skilled ACP facilitators, by people who may be unaware of the legal requirements, and by people who may not receive guidance on which documents to use or on how to complete them accurately. Documents created without the assistance of a skilled facilitator can lead to written plans that are incomplete, inaccurate, and contain ambiguous and confusing statements. Respecting Choices recommends a process for review prior to the entry of an AD into the medical record to identify problems and take corrective action. AD documents may be presented to an organization for entry into an individual s medical record from a variety of sources from an outpatient setting, from an inpatient ACP session, by mail from a patient or the patient s attorney, or transferred with the patient from another healthcare facility. At Gundersen Health System, all documents are reviewed by trained medical records personnel for accuracy and completeness. The criteria for accuracy and completeness are typically determined by rules established in statutes or by institutional policy. Occasionally, ambiguous statements that require clarification or investigation by the patient s healthcare providers are found in AD documents. For example, documents that include such statements as Don t keep me alive if I am a vegetable or I never want to be on machines, can create confusion for family and physicians who need to interpret the full meaning of these statements. Does the meaning of machines include a short time on mechanical ventilation or hemodialysis for an anticipated full recovery from a necessary surgical procedure? The time it requires to clarify the patient s goals and decisions at this stage of document completion can save countless hours of conflict resolution later. If the document is complete and accurate, the next steps include an investigation into the medical chart for a previous AD, which is removed and returned to the patient with an explanatory letter. This type of review process is invaluable and provides an opportunity to correct inaccuracies that could lead to confusion and misinterpretation by healthcare agents and healthcare providers seeking to determine a person s preferences. The goal is to enter into the medical record an AD document that is complete, accurate, and thorough, and that includes clearly written statements of goals, values, and beliefs. A process flow example of this type of AD review and entry is provided in Appendix 4, page

49 GUIDELINE FOR PAPER AND ELECTRONIC STORAGE The following summary of the guidelines for paper and electronic storage is taken from the Respecting Choices facilitator manual (Hammes & Briggs, 2007). When the Respecting Choices program began and medical records were paper charts, the medical centers in La Crosse agreed that all ADs would be placed in green plastic sleeves and located at the front of patient charts. Visible even when misfiled in the medical record, the sleeve is durable and portable. It was easily moved from the medical record to the patient s chart during hospitalizations and transferred back at discharge, thereby keeping the document at hand when it may be needed most. Even though charts are not always immediately available in the emergency department, the green sleeve was easily located once the chart arrived. In this way the patient AD was always easily accessible to any physician or nurse caring for the hospitalized patient. New challenges and opportunities are presented as medical records evolve to an electronic format. Gundersen Health System invested over two years in the development and design of an ACP application that is a component of a larger EMR. The goal of designing this ACP application was to capture all the critical implementation variables into a single electronic application system. Finding this application in the EMR is simple. On the first page of the patient s EMR (eg., the Patient Summary page), there is an obvious link to the ACP application. Once in this application, it is possible to determine whether the patient has any type of written AD and, if so, to view this document as a PDF file. If the patient has a power of attorney for healthcare, the names of healthcare agents and their contact information are immediately in view, as is any preference about cardiopulmonary resuscitation (CPR). In addition, the application features a computer-directed system to interview a patient about ACP needs, to retrieve dictated notes involving ACP, to make referrals to ACP facilitators, and to allow facilitators and others to record notes about ACP education or interactions. This application is available to all Gundersen Health System professionals in all Gundersen Health System care settings, making it a powerful way to communicate patient preferences and ACP discussions. Thus, if planning were started at the Medical Center when a patient was hospitalized, a facilitator at a regional clinic could access this information through our integrated EMR system when a patient returns for a referred visit. This electronic system provides patients with easy access to their own medical record. They can (1) view their AD from any computer via the Internet, (2) check to confirm that the document has been entered, (3) consider whether the AD is up to date, and (4) download the AD as an electronic file to share with family and friends. This application also provides access to contact information and blank documents. 43

50 STRATEGIES FOR AD REVIEW AND UPDATE Research shows that patients preferences are dynamic and change over time (Wittink et al., 2008). Therefore, an effective ACP process includes the opportunity for individuals to update their written plans at any time. In practice, however, patients who have completed ADs rarely have them reviewed to determine if they represent current goals, values, and decisions, or if they contain outdated information. This lack of review results in missed opportunities for ongoing ACP discussions. Consider the following case Mr. H. is an 80-year-old man who completed his AD along with his wife seven years ago during a routine healthcare visit. At the time, he was in fairly good health, and he and his wife appointed each other as healthcare agents. Their plans were entered into their respective medical records and were accessible to healthcare providers. During the last year, Mr. H. suffered a stroke that left him with left-sided paralysis, was diagnosed with advanced renal failure, and needed to move from his home to an assisted living facility. He was informed that he is at high risk for complications from his cardiovascular disease. If Mr. H. is admitted to a hospital for an exacerbation of one of his chronic conditions, he would answer yes to the existence of an AD, and there would likely be a flag that indicates the presence of this document in his medical record. Without a more robust AD review process, Mr. H. will not be given an opportunity to discuss his current goals and values, to understand his treatment options, or to change his address and healthcare agent s contact information, or to have other ACP discussions from which he would benefit. Mrs. H. will not be reminded of the need to review her AD document and, in light of her husband s failing healthcare status, consider choosing someone else as her healthcare agent. A variety of strategies can be employed to hardwire an ACP review process into routine patient care. These strategies can be viewed as a type of preventive and proactive healthcare, providing individuals with assistance for their ongoing ACP needs. ROUTINE ACP ADMISSION ASSESSMENT Federal law requires that all patients being admitted to the hospital be asked during a nursing assessment if they have an AD and if they would like more information on ACP. The Joint Commission requires that attempts be made to retrieve ADs and have them available in the patient s medical record, and to assess if the AD represents their current preferences; however, an organization can take steps to go beyond these minimum requirements by opening an existing AD document (as with Mr. H.) and reviewing it with patients or their healthcare agent. This step allows for changes to be made (e.g., healthcare agent, contact information) as well as the expression of current preferences that would need to be acted on by the nurse immediately (e.g., a patient who requests a Do-Not-Resuscitate order). These RN assessment questions have been integrated into the electronic ACP application at Gundersen Health System in a decision tree format that makes it routine for nurses to ask these review questions. Then, based on the patient s answers, the application prompts them to ask additional questions. A similar ACP assessment process can also be implemented in an outpatient or ambulatory setting. This ACP assessment interview is included in Appendix 5, pages

51 ANNUAL MEDICAL APPOINTMENT Integration of relevant questions into an annual history and physical examination checklist also prompts an AD review. A question such as, Have you reviewed your AD within the last year? could encourage a patient to request a copy or prompt the healthcare provider to make a referral to an ACP facilitator for a document update. At Gundersen Health System, an ACP review or discussion must be completed annually for patients 55 and older. The review is reflected in a dictated note that is automatically tagged and integrated into an ACP section of the EMR. COMPUTER REMINDERS Computer reminders (e.g., appointment flags) have also been effective in prompting healthcare providers to initiate ACP discussions in the outpatient setting, resulting in increased documentation of discussions as well as the completion of AD documents (Dexter et al., 1998; Pearlman, Starks, Cain, & Cole, 2005). These types of creative health information technology strategies offer future opportunities to hardwire quality ACP into the routines of patient care and open channels of communication wherever care is delivered. RECOMMENDATIONS FOR TRANSFERRING PATIENT PREFERENCES Patients typically receive healthcare in multiple organizations within their communities. Transfer of AD information among these sites of care is critical if the goal of honoring patients preferences is to be accomplished. Without a system that ensures plans will be transferred, patients may receive unwanted care, families may be forced to make difficult and stressful decisions, and patients may be inadvertently transferred to sites of care they would not have chosen. At Gundersen Health System, copies of a patient s AD are automatically provided (1) to another hospital where the patient is likely to go for emergency services, (2) to another healthcare facility, or (3) upon request by a healthcare facility or physician. To ensure sustainability, this system is a component of the discharge procedure for all patients. Many organizations are exploring the feasibility of creating registries for ADs that are stored in a central server and can be retrieved electronically from any healthcare facility. In theory, worldwide access to an individual s ADs seems advantageous; however, barriers exist to successful adoption and implementation: lack of sufficient number of documents (Numbers remain low.; often individuals are either hesitant or simply do not take time to enter their AD into the registry. Likewise, healthcare organizations responsible for entering a patient s AD into the registry often fail to do so.); need for funding to create and maintain the registry (The cost/benefit ratio is unclear, and electronic registries are costly to build and maintain.); and ADs incompatible with patient s medical record system (ADs that are not linked with medical records are never seen as part of the routine of patient care. Consequently, ACP likely will not be addressed or regularly reviewed. ) 45

52 What is the solution? At this time it would appear that the ideal approach is to use the EMR for storing ADs. Such an approach will require significant upgrades to current EMR systems sold in the United States. Additionally, we recommend implementation of the Physician Orders for Life-sustaining Treatment (POLST) program, used in the La Crosse community since Originating in the state of Oregon ( POLST is gaining widespread national popularity as best practice for ensuring that endof-life treatment preferences are honored. The POLST program provides a method for transferring a person s treatment preferences into medical orders that are recognized throughout the healthcare continuum (home care, long-term care, during transport). States and communities that have replicated the POLST program have used various names for the document, such as Medical Orders for Life- Sustaining Treatment (MOLST) and Physician Orders for Scope of Treatment (POST), but the programs are consistent with the POLST Paradigm. ACP TEAM AND REFERRAL SYSTEM ACP is a process that takes time and requires consistent exposure in a variety of settings (e.g., clinic, hospital, and community groups), creative strategies, and differing sets of skills for various situations. ACP is not a one-size-fits-all conversation, nor is it an event that is completed in one encounter. This reality creates multiple opportunities for healthcare professionals and others to identify individuals in need of ACP and to make referrals to other appropriate resources. It is important to design an ACP process that meets the needs and resources of your organization or community, and then to develop a system for making timely referrals to appropriate members of the ACP team. THE TEAM APPROACH TO ACP Historically, the physician has been singled out as the most appropriate professional for discussing ADs with patients. Underlying this point of view is the assumption that ADs are primarily about whether to start and/or stop medical treatments. Although medical treatments comprise a portion of ACP decision making, ACP also encompasses many other topics. It is often not clearly stated in the literature or demonstrated in practice exactly what a physician is responsible for doing. Should he or she discuss CPR? help the patient complete a power of attorney for healthcare? explore goals, values, and beliefs about future healthcare? meet with a healthcare agent? review and update ADs? The Respecting Choices program believes that medicine is one of several disciplines compatible with providing skilled, competent ACP facilitation. In order for an ACP system to work successfully, the system needs to define the roles and responsibilities of each health professional. Respecting Choices promotes a team approach physician, nurse, social worker, chaplain, community clergy, or volunteer people with interrelated roles and responsibilities. 46

53 Persons other than physicians will be responsible for assisting patients and families in making informed healthcare decisions, which is both practical and effective. Some physicians report lack of time and lack of skill and comfort with the planning process. Others believe that ACP and the completion of ADs are unnecessary (Curtis, Patrick, Caldwell, & Collier, 2000; Epstein, Alper, & Quill, 2004; Feeg & Elebiary, 2005; Quill, 2000). The training and integration of non-physicians to provide ACP facilitation has resulted in improvements in end-of-life discussions and completion of written documents (Hammes, 2001; Molloy et al., 2000; Morrison et al., 2005). The use of non-physician ACP facilitators does not mean that physicians are being left out or have only a minor role to play in assisting patients in their decisionmaking process. On the contrary, it encourages health professionals to work as a team, take advantage of each other s strengths, and optime clinical opportunities to assist people with their ACP needs. Further, delineating specific responsibilities for all direct caregivers is critical to identification of patients and families in need of ACP assistance and to making consistent and timely referrals. Consider the following examples of opportunities that lend themselves well to a team approach to ACP: A chaplain is visiting one of his parishioners whose husband is in intensive care following a severe and devastating stroke. The husband is not expected to live, but the wife is confused about the treatments being performed and wonders why he seems to be in pain. A chaplain skilled in the concepts of ACP can feel more confident inquiring into the existence of an AD, the goals and values the husband may have expressed, and making a referral to a healthcare ACP facilitator to assist with other questions and concerns. An attorney is meeting with a client for estate planning and additionally encourages the client to complete an AD. The client is very interested; however, she has multiple health problems, and her health status has declined over the past year. She has never talked to her physician about her medical conditions. An attorney skilled in the concepts of ACP will realize the multiple healthcare decisions this client will be facing in the near future. Rather than simply completing an AD, the attorney will recommend the client schedule an appointment with an ACP facilitator at the local hospital. A nurse is caring for a patient who has severe pulmonary disease and is being hospitalized for the fourth time in five months. He has an AD that designates his wife as the healthcare agent and there is a do not resuscitate order on his chart. The patient is receiving multiple interventions, including antibiotics to treat his pulmonary infection and aggressive respiratory treatments to assist his breathing. In the middle of the night, the patient says to the nurse, I am not sure all of this is worth it to me anymore. A nurse skilled in the concepts of ACP will feel confident exploring the meaning of this statement, providing information on the benefits and burdens of life-sustaining treatment, and making referrals to others for more discussion. A physician who is knows the importance of initiating ACP discussions as part of routine medical care will (1) take the time to broach the subject with all patients, (2) support the value of learning more about the stages of ACP, (3) make a referral to a qualified ACP facilitator for a more in-depth discussion, and (4) encourage the involvement of the patient s healthcare agent. These examples highlight several reasons for designing a team approach to ACP: As the population of the elderly continues to increase, there are more individuals needing information and assistance with planning for their future healthcare decisions. 47

54 These individuals are or can be found in a variety of settings, such as community groups, religious organizations, and facilities where they receive healthcare. Each professional brings different skills in addressing an individual s ACP needs. Learning to use and respect each other s unique contributions enhances the service delivered. Time constraints and competing professional responsibilities can interfere with the ability to have quality ACP discussions. Professionals may avoid initiating discussions due to lack of time or skill; however, when a team of qualified resources exists, referrals, completed ACP discussions, and documented follow-up plans will likely be the outcome. Many opportunities exist within communities to increase public awareness on the importance of ACP. A team approach that involves community leaders (e.g., spiritual advisors, parish nurses, caregiver support groups) increases the availability of needed resources within settings where people gather for group activities. THE STORY OF ONE TEAM S APPROACH TO ACP IN A CLINIC SETTING One of our implementation sites was interested in conducting a pilot ACP project in a busy internal medicine clinic of their healthcare organization. This clinic cared for many patients who had chronic, progressive illness and required regular follow-up appointments with the healthcare team. Healthcare was provided to these patients by a team of medical residents under the supervision of attending physicians, two RN care coordinators, a social worker, and a few medical assistants. Patient appointments were tightly scheduled. RN care coordinators received referrals from physicians for patient education and monitoring of the medical plan of care. Social workers received referrals for home care needs, financial assistance, and other needed resources. Team members relied on each other to deliver comprehensive care to their patients, and understood the advantage of delineating the roles they would take to improve ACP with their patients. Each week the team reviewed the list of patients scheduled and decided whom to approach about the new ACP service in the clinic. During check-in, the medical assistant would provide patients with written information on ACP (including a letter of introduction by the attending physicians promoting the clinic s new ACP service), briefly explain the new service, and alert the patient that more information would be provided by the medical resident. The medical resident was responsible for discussing the importance of ACP with the patient and recommending a follow-up discussion with either the RN care coordinator or the social worker, both of whom had received ACP facilitator training. Patients who expressed interest in the ACP service were scheduled for an extra 30-minutes to be added to their next clinic appointment, reminded to review the information provided, and encouraged to bring their chosen healthcare agent along to the ACP appointment. In this busy clinic setting, it would have been impossible for any one person to assume the entire responsibility for ACP; however, with each person taking a specific role and making referrals to others as appropriate, the work of ACP became more manageable and more reliable for the patients. DEFINING THE APPROPRIATE ACP TEAM ACP teams can be constructed based on a number of considerations among them, available resources, interests, expertise, and goals of the initiative. Consider the following strategies when designing an ACP team: 48

55 Identify the initial goals of your ACP initiative: o o What groups (clinic, heart failure clinic, faith community) are interested in being part of the initial implementation? What available resources exist within these interest groups? Explore the commitment to the following values of a team approach to ACP: o o o o o o o o recognize and respect the complementary perspectives of various professionals; share a common belief that all professionals have a moral, ethical, and legal responsibility to assist individuals in designing personalized plans; respect for patient advocacy and informed decision making, accountable for each other s practice; commitment to attain and maintain competency in ACP; work collaboratively to advocate for patients, families, and communities; recognize, identify, and respond to ethical problems; and mediate ethical conflict among the individual, family, and healthcare team. Define the team members and develop written roles and responsibilities. (A description of common ACP team members and their roles is provided in Appendix 6, pages ) Identify the related ACP competencies for each role. Establish role-specific educational programs. Include role expectations in position descriptions and performance evaluations. Monitor the outcomes of an interdisciplinary team approach. THE ACP TEAM REFERRAL SYSTEM Once the ACP team is defined, a system must be created that will help members work together effectively to address the unique ACP needs of individuals and their families. A system must be established to determine who will receive specific referrals for different requests, what information needs to be collected and routed to the appropriate resource, how appointments can be made, how communication should be documented, and how the effectiveness of the team will be evaluated. An ACP referral may be needed for many reasons, including: providing information on basic planning, completing an AD document, identifying benefits and burdens of life-sustaining treatment (e.g., cardiopulmonary resuscitation), learning comfort care options (e.g., palliative or hospice care), and deciding where a completed document should be stored. An ACP referral may include an appointment with an ACP facilitator. The level of ACP facilitator must be matched to the needs of the individual seeking assistance. A less experienced facilitator may assist a healthy person with basic planning, while a more experienced facilitator with clinical expertise may be needed to help patients with chronic, progressive illness understand complex and confusing medical choices. The ACP referral system needs to include the ability to triage the necessary team member who 49

56 will best meet the needs of the individual seeking assistance. (An example of an ACP referral process in included in Appendix 7, pages ) At Gundersen Health System, an ACP referral can be generated by any patient, family member, or healthcare provider; a physician order is not required. If a patient would like to participate in ACP and complete an AD document, a list of facilitators is available in the electronic ACP application. CONCLUSION Creating an effective ACP system requires three components: ACP team development and referral, AD document creation, and medical record storage and retrieval. Each must be a priority as your ACP program is designed, evaluated, or improved upon. While the initial design of these systems will not be perfect, they will provide implementation teams with the necessary tools and strategies to move forward. We hope that the description of each of these key systems provided in this chapter will stimulate dialogue in your organization and community about what is working and about what is not. 50

57 REFERENCES Coppola, K. M., Ditto, P. H., Danks, J. H., & Smucker, W. D. (2001). Accuracy of primary care and hospital-based physicians predictions of elderly outpatients treatment preferences with and without ADs. Archives of Internal Medicine, 161(3), Curtis, J. R., Patrick, D. L., Caldwell, E. S., & Collier, A. C. (2000). Why don t patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Archives of Internal Medicine, 160(11), Dexter, P. R., Wolinsky, F. D., Gramelspacher, G. P., Zhou, X. H., Eckert, G. J., Waisburd, M., et al. (1998). Effectiveness of computer-generated reminders for increasing discussions about ADs and completion of AD forms. A randomized, controlled trial. Annals of Internal Medicine, 128(2), Ditto, P. H., Danks, J. H., Smucker, W. D., Bookwala, J., Coppola, K. M., Dresser, R., et al. (2001). ADs as acts of communication: A randomized controlled trial. Archives of Internal Medicine, 161(3), Epstein, R. M., Alper, B. S., & Quill, T. E. (2004). Communicating evidence for participatory decision making. JAMA: The Journal of the American Medical Association, 291(19), Feeg, V. D., & Elebiary, H. (2005). Exploratory study on end-of-life issues: Barriers to palliative care and ADs. The American Journal of Hospice & Palliative Care, 22(2), Hammes, B. J. (2001). What does it take to help adults successfully plan for future medical decisions? Journal of Palliative Medicine, 4(4), Hammes, B. J., & Briggs, L. (2007). Respecting Choices Facilitator Manual (3rd ed.). La Crosse, Wisconsin: Gundersen Lutheran Medical Foundation. Hardin, S. B., & Yusufaly, Y. A. (2004). Difficult end-of-life treatment decisions: Do other factors trump ADs? Archives of Internal Medicine, 164(14), Kass-Bartelmes, B. L., Hughes, R., Rutherford, M. K., & Boches, J. (2003). Research in action issue #12: Advance care planning: Preferences for care at the end of life. Rockville, Maryland AHRQ Pub No : Agency for Healthcare Research and Quality. McAuley, W. J., & Travis, S. S. (2003). Advance care planning among residents in long-term care. The American Journal of Hospice & Palliative Care, 20(5), Molloy, D. W., Guyatt, G. H., Russo, R., Goeree, R., O Brien, B. J., Bedard, M., et al. (2000). Systematic implementation of an AD program in nursing homes: A randomized controlled trial. JAMA: The Journal of the American Medical Association, 283(11), Morrison, R. S., Chichin, E., Carter, J., Burack, O., Lantz, M., & Meier, D. E. (2005). The effect of a social work intervention to enhance advance care planning documentation in the nursing home. Journal of the American Geriatrics Society, 53(2), Morrison, R. S., Olson, E., Mertz, K. R., & Meier, D. E. (1995). The inaccessibility of ADs on transfer from ambulatory to acute care settings. JAMA : The Journal of the American Medical Association, 274(6), Pearlman, R. A., Starks, H., Cain, K. C., & Cole, W. G. (2005). Improvements in advance care planning in the Veterans Affairs system: Results of a multifaceted intervention. Archives of Internal Medicine, 165(6), Quill, T. E. (2000). Perspectives on care at the close of life. initiating end-of-life discussions with seriously ill patients: Addressing the "elephant in the room". JAMA : The Journal of the American Medical Association, 284(19), Teno, J., Lynn, J., Wenger, N., Phillips, R. S., Murphy, D. P., Connors, A. F.,Jr, et al. (1997). ADs for seriously ill hospitalized patients: Effectiveness with the patient self-determination act and the SUPPORT intervention. SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of the American Geriatrics Society, 45(4), Teno, J. M., Licks, S., Lynn, J., Wenger, N., Connors, A. F.,Jr, Phillips, R. S., et al. (1997). Do ADs provide instructions that direct care? SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of the American Geriatrics Society, 45(4), Teno, J. M., Lynn, J., Phillips, R. S., Murphy, D., Youngner, S. J., Bellamy, P., et al. (1994). Do formal ADs affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. The Journal of Clinical Ethics, 5(1),

58 Teno, J. M., Stevens, M., Spernak, S., & Lynn, J. (1998). Role of written ADs in decision making: Insights from qualitative and quantitative data. Journal of General Internal Medicine, 13(7), Uhlmann, R. F., Pearlman, R. A., & Cain, K. C. (1988). Physicians and spouses predictions of elderly patients resuscitation preferences. Journal of Gerontology, 43(5), M Virmani, J., Schneiderman, L. J., & Kaplan, R. M. (1994). Relationship of ADs to physician-patient communication. Archives of Internal Medicine, 154(8), Wenger, N., Shugarman, L. R. & Wilkinson, A. (2008). ADs and advance care planning: Report to Congress. Retrieved 12/3, 2009, from Wittink, M. N., Morales, K. H., Meoni, L. A., Ford, D. E., Wang, N. Y., Klag, M. J., et al. (2008). Stability of preferences for end-of-life treatment after 3 years of follow-up: The Johns Hopkins Precursors Study. Archives of Internal Medicine, 168(19),

59 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Chapter 2 Appendices 53

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61 APPENDIX 1: DESIGNING YOUR ACP SYSTEM INFRASTRUCTURE - THE AD DOCUMENT 1. State law requirements notices signatures witnesses 2. Document layout 3. Content DESIGN ELEMENTS authority granted to healthcare agent language in lay terms as much as possible large font introduction that gives explanation of essential features of a power of attorney for healthcare, explains how to complete the document, who should have copies, and where to call for assistance cover page with name, date-of-birth identifier, where copies are being sent content divided into sections or parts with related instructions for each (e.g., appointing a healthcare agent; explaining authority of agent; giving instructions, and making the document legal) space for complete contact information for at least two healthcare agents brief narrative overview emphasizing discussion of goals, values, and beliefs with healthcare agent as critical component of ACP instructions for selecting a healthcare agent include: 1) the qualifications (e.g., willing to accept responsibility, willing to discuss preferences and goals, willing to abide by values and goals, and ability to make decisions under sometimes stressful situations), and 2) all legal requirements the authorization of the broadest legal authority possible for the healthcare agent with the option to limit the authority if desired the option to include Statement of Desires, Special Provisions, or Limitations. (The goals of this section are to provide opportunity for individuals to provide evidence of goals, values, and beliefs that may assist healthcare agent and physicians in making decisions. This section should NOT focus on a checklist of life-sustaining treatments but rather expressions of values and expected outcomes that could be applied as guiding principles for substitute decision making.) Specifically, this section should consider o o o o o when the goals of medical care would focus primarily on comfort if there were a severe, permanent neurological injury or illness; special instructions when goals of care are not to prolong life; who should or should not be involved in decisions; organ and tissue donation; and religious beliefs and traditions. 55

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63 APPENDIX 2: THE LA CROSSE REGION POWER OF ATTORNEY FOR HEALTHCARE DOCUMENT and the instructions for completing this document OVERVIEW The attached power of attorney for healthcare form is a legal document, developed to meet the legal requirements for Wisconsin, Minnesota, and Iowa. This power of attorney for healthcare form allows you to appoint another person and alternate persons to make healthcare decisions for you if you become unable to make these decisions for yourself. The person you appoint is called your healthcare agent. This document gives your healthcare agent authority to make your decisions only when you have been determined incapable by your physicians to make your own healthcare decisions. It does not give your healthcare agent any authority to make your financial or other business decisions. In addition, it does not give your healthcare agent authority to make certain decisions about your mental health treatment. Before completing this power of attorney for healthcare form, take time to read it carefully. It is also very important that you discuss your views, values, and this document with your healthcare agent. If you do not closely involve your healthcare agent and you do not make a clear plan together, your views and values may not be fully respected because they will not be understood. If you want to document your views about future healthcare, but do not want to or cannot use this power of attorney for healthcare form, ask your health organization or attorney for advice about alternatives. HOW TO COMPLETE THIS DOCUMENT This power of attorney for healthcare form is divided into four parts. Part I Part II Part III Part IV Appointing a Healthcare Agent Authority of the Healthcare Agent Statement of Desires, Special Provisions or Limitations Making the Document Legal STEPS TO FOLLOW In each of the four parts of the attached document you will find instructions. Read and follow these instructions carefully. The basic things you must do are: 1. Provide the information on page 59 (in this manual) 2. Appoint at least one healthcare agent, Part I, on page Indicate choices for Items 1, 2, and 3 on pages Indicate any written instructions you want in Part III, pages Sign and date the document on page Have the document witnessed. Both witnesses must be present when you sign this document. 57

64 If you wish to donate your body after death to medical science, you should contact the closest medical school in your state and make arrangements through that medical school. Here are some places to contact: University of Wisconsin-Madison Medical School (608) Mayo Medical School, 7 a.m. to 4 p.m. (507) or (507) University of Iowa Medical School (319) AFTER COMPLETING THIS DOCUMENT After you complete the document, make copies to be given out as follows: one copy for yourself; one copy for the healthcare agent and alternates appointed in the document one copy to share and discuss with your physician; one copy for your record at the hospital where you would go in an emergency; and extra copies to share with others if you wish (loved ones, your clergy, and your attorney. A photo or fax copy is as legally valid as an original. NEED ASSISTANCE? If you need assistance in completing this document you may contact the following places: Gundersen Health System Gundersen Health System Pastoral Care (608) , ext or (800) , ext ACP Coordinator (608) , ext or (800) , ext Gundersen Health System, Onalaska Clinic Social Services (608) or (800) , ext Gundersen Health System Regional Clinic or affiliate in your community Mayo Clinic Health System Franciscan Healthcare-La Crosse ACP Coordinator (608) or (800) , ext Elder Services La Crosse (608) Home Health Services/Hospice (608) or (800) , ext Or call the Mayo Clinic Health System affiliate in your community. All service sites can be accessed through the toll-free number above - (800)

65 Name: Date of Birth: Address: Telephone: POWER OF ATTORNEY FOR HEALTHCARE FOR Copies of this document are being or have been given to following health organizations and people (Provide copies to your hospital, physician, and healthcare agents and copies might also be given to close family, friends and clergy.): POWER OF ATTORNEY FOR HEALTHCARE DOCUMENT Notice to the Person Making This Document You have the right to make decisions about your healthcare. No healthcare may be given to you over your objection, and necessary healthcare may not be stopped or withheld if you object. Because your healthcare providers in some cases may not have had the opportunity to establish a long-term relationship with you, they are often unfamiliar with your beliefs and values and the details of your family relationships. This poses a problem if you become physically or mentally unable to make decisions about your healthcare. In order to avoid this problem, you may sign this legal document to specify a person who you would want to make healthcare decisions for you if you become unable to make those decisions personally. That person is known as your healthcare agent. You should take some time to discuss your thoughts and beliefs about medical treatment with the person or persons you might specify. You may state in this document any types of healthcare that you do or do not desire, and you may limit the authority of your healthcare agent. If your healthcare agent is unaware of your desires with respect to a particular healthcare decision, he or she is required to determine what would be in your best interests in making the decision. This is an important legal document. It gives your agent broad powers to make healthcare decisions for you. It revokes any prior power of attorney for healthcare that you may 59

66 have made. If you wish to change your Power of Attorney for Healthcare, you may revoke this document at any time by destroying it, by directing another person to destroy it in your presence, by signing a written and dated statement, or by stating that it is revoked in the presence of two witnesses. If you revoke, you should notify your agent, your healthcare providers and any other person to whom you have given a copy. If your agent is your spouse and your marriage is annulled or you are divorced after signing this document, the designation of your spouse as healthcare agent shall no longer be valid. You may also use this document to make or refuse to make any anatomical gift upon your death. If you use this document to make or refuse to make an anatomical gift, this document revokes any prior record of gift you may have made. You may revoke or change any anatomical gift that you make in this document by crossing out the anatomical gifts provision in this document. Do not sign this document unless you clearly understand it. It is suggested that you keep the original of this document on file with your physician. P A R T I A P P O I N T I N G A P E R S O N T O M A K E M Y H E A L T H C A R E D E C I S I O N S W H E N I C A N T M A K E M Y O W N If I am no longer able to make my own healthcare decisions, this document names the person I choose to make these choices for me. This person will be my healthcare agent. This person will make my healthcare decisions when I am determined to be incapable to make healthcare decisions as provided under state law. INSTRUCTIONS FOR COMPLETING THIS PART When selecting someone to be your healthcare agent, pick someone who knows you well, who you trust, who is willing to respect your views and values, and who is able to make difficult decisions in stressful circumstances. Often family members are good choices, but not always. Make sure that you pick someone who will closely follow what you want and will be a good advocate for you. Whatever you do, take time to discuss this document and your views with the person(s) you pick to be your agent(s). Your healthcare agent should be at least 18 years or older and should not be one of your healthcare providers or an employee of your healthcare provider, unless they are a close relative. Space has been provided for a second and third alternate healthcare agent. The person I choose as my Healthcare Agent is: Name: Day phone: Cell phone: Address: Evening phone: City: State: ZIP Code: 60

67 If this healthcare agent is unable or unwilling to make these choices for me, or if my spouse is designated as my healthcare agent and our marriage is annulled or we are divorced or legally separated, then my next choice for a healthcare agent is: Second choice (1 st Alternate Agent) Name: Day phone: Evening phone: Cell phone: Address: City: State: ZIP Code: If this alternate healthcare agent is unable or unwilling to make these choices for me, or if my spouse is designated as my healthcare agent and our marriage is annulled or we are divorced or legally separated, then my next choice for a healthcare agent is: Third choice (2 nd Alternate Agent) Name: Day phone: Evening phone: Cell phone: Address: City: State: ZIP Code: P A R T I I G E N E R A L A U T H O R I T Y O F T H E H E A L T H C A R E A G E N T I want my healthcare agent to be able to do the following (Please cross out anything you do not want your healthcare agent to do that is listed below): to make choices for me about my medical care or services, like tests, medicine, and surgery. If treatment has already been started, my healthcare agent can keep it going or have it stopped depending upon my stated instructions or my best interests; to interpret any instruction I have given in this form or given in other discussions according to my healthcare agent s understanding of my wishes and values; to review and release my medical records and personal files as needed for my medical care; to arrange for my medical care and treatment in Wisconsin, Minnesota and Iowa or any other state, as my healthcare agent thinks appropriate; 61

68 to determine which health professionals and organizations provide my medical treatment; or to make decisions about organ/tissue or body donation decisions (anatomical gifts) after my death according to my known wishes or values. INSTRUCTIONS FOR COMPLETING THESE SECTIONS Put your initial on the line (e.g., DS ) to indicate you have selected a yes, no, or not applicable in the next three sections. Draw a line through the statements (e.g., No, my healthcare ). If you do not initial any line in a section and make no clear choice, the statue in Wisconsin says your choice is considered to be no. This means if you do not indicate a choice, in Wisconsin only a court may make such a decision and not your healthcare agent. 1. Agent authority to admit me to a nursing home or community-based residential facility for the purpose of long-term care: Yes, my healthcare agent has authority, if necessary, to admit me to a nursing home or community-based residential facility for a long-term stay, subject to any limits I have set forth in this document. No, my healthcare agent does not have authority to admit me to a Wisconsin nursing home or a community-based residential facility for a long-term stay. If I initialed no, or leave this section blank, I cannot be admitted to a Wisconsin long-term care facility without a court order. 2. Agent authority to order the withholding or withdrawal of feeding tube and (IV) hydration: Yes, my healthcare agent has authority to have a feeding tube or IV hydration withheld or withdrawn from me subject to any limits I have set forth in this document. No, my healthcare agent does not have authority to have a feeding tube or IV hydration withheld or withdrawn from me. If I initialed no, or leave this section blank, feeding tubes or IV hydration cannot be withheld or withdrawn from me in Wisconsin without a court order. 3. Agent authority to make decisions if I am pregnant: Yes, my healthcare agent has authority to make decisions for me if I am pregnant, subject to any limits I have later set forth in this document. No, my healthcare agent does not have authority to make decisions for me if I am pregnant. If I initialed no, or leave this section blank, healthcare decisions cannot be made for me during my pregnancy without a court order. Not applicable, because I am either a male or no longer capable of becoming pregnant. 62

69 P A R T I I I S T A T E M E N T O F D E S I R E S, S P E C I A L P R O V I S I O N S, O R L I M I T A T I O N S My healthcare agent shall make decisions consistent with my stated desires and values and is subject to any special instructions or limitations that I may list here. The following are some specific instructions for my healthcare agent and/or physician providing my medical care. If there are conflicts among my known values and goals, I want my agent to make the decision that would best represent my values and preferences. If I require treatment in a state that does not recognize this Power of Attorney for Healthcare, or if my healthcare agent cannot be contacted, I want the instructions below to be followed based on my common law and constitutional right to direct my own healthcare. INSTRUCTIONS FOR COMPLETING THIS PART You are not required to provide any written instructions or make any selections in Part III. If you choose not to provide any instructions, your healthcare agent will make decisions based on your oral instructions or what is considered your best interest. If you choose not to provide any instructions, it is recommended that you draw a line and write No Instructions across the page. 1. Stopping Attempts of Life-Prolonging Treatments: If you agree, write your initials on the line next to each statement below. If you do not agree, draw a line through the statement. If I reach a point where it is reasonably certain that I will not recover my ability to interact meaningfully with myself, my family, friends, and environment, I want to stop or withhold all treatments that might be used to prolong my existence. Treatments I would not want if I were to reach this point include but are not limited to tube feedings, IV hydration, respirator/ventilator, CPR, and antibiotics. 2. Pain and Symptom Control: If I reach a point where efforts to prolong my life are stopped, I want medical treatments and nursing care that will make me comfortable. The following are important to me for comfort: (If you don t write specific wishes, your physician and nurses will provide the best standard of care possible.) 3. Cardiopulmonary Resuscitation (CPR): My CPR choice listed on the following pages may be reconsidered by my healthcare agent in light of my other instructions or new medical information, if I become incapable of making my own decisions. If I do not want CPR attempted, my physician should be made aware of this choice. If I indicate below that I do not want CPR attempted, this choice, in itself, will not stop emergency personnel from attempting CPR in an emergency. Other documents 63

70 may be needed to control the actions of emergency personnel. (Initial one of the following statements and draw a line through the statements that you do not want.) I want CPR attempted unless my physician determines any one of the following: I have an incurable illness or injury and am dying; OR I have no reasonable chance of survival if my heart stops; OR I have little chance of long-term survival if my heart stops and the process of resuscitation would cause significant suffering. I want CPR attempted if my heart stops. I do not want CPR attempted if my heart stops, but rather, want to permit a natural death. 4. Other instructions or limitations I want my healthcare agent to follow: 5. If it is possible, when I am nearing my death and cannot speak, I want my friends and family to know I have the following thoughts and feelings: 6. If I am nearing my death, I want the following: (List the type of care, ceremonies, etc., that would make dying more meaningful for you. 7. Persons I want my agent to include in the decision process: I ask that my healthcare agent make reasonable attempts to include the following persons in my healthcare decisions if there is time: 64

71 8. Religion: I am of the faith, and am a member of the congregation, synagogue, or worship group. The phone number of congregation, synagogue, or worship group is Please attempt to notify them. 9. Upon My Death: After my death, the following are my instructions. If my healthcare agent does not have authority to make these decisions, I ask that my next of kin and physician follow these requests if possible. Autopsy: Initial one or two choices below, and draw a line through the statement(s) that you do not want. I would accept an autopsy if it can help my blood relatives understand the cause of my death or assist them with their future healthcare decisions. I would accept an autopsy if it can help the advancement of medicine or medical education. I do not want an autopsy performed on me. Donation of my organs or tissue: (Examples of organs are kidney, liver, heart, lung and examples of tissue are eye, skin, bone, heart valve.) Initial one and draw a line through the statements that you do not want. I consent to donate only the following organs or tissue if possible (name the specific organs or tissue):. I consent to donate any organs or tissue, if I am a candidate. I do not want to donate any organ or tissue. 65

72 P A R T I V M A K I N G T H E D O C U M E N T L E G A L INSTRUCTIONS FOR COMPLETING THIS PART Wisconsin residents must have this document signed and dated in the presence of two witnesses. Minnesota or Iowa residents may have this document signed and dated in the presence of two witnesses or a notary public. I am thinking clearly; I agree with everything that is written in this document and I have made this document willingly. My signature (or my signature signed by the person named below) Date: If I cannot sign my name, I can ask someone to sign this document for me. Signature of the person who I asked to sign this document for me Date: Print the name of the person who I asked to sign this document for me. Statement of Witnesses I know this person to be the individual identified in the document. I believe him or her to be of sound mind and at least 18 years of age. I personally witnessed him or her sign this document, and I believe that he or she did so voluntarily by signing this document as a witness. I certify that I am: at least 18 years of age; not related to the person signing this document by blood, marriage or adoption; not a healthcare agent appointed by the person signing this document; not directly financially responsible for that s person s healthcare; not a healthcare provider directly serving the person at this time; not an employee (other than a social worker or chaplain) of a healthcare provider directly serving the person at this time; and not aware that I am entitled to or have a claim against the person s estate. 66

73 Witness number 1: Signature Date: Print name Address City State ZIP Code Witness number 2: Signature Date: Print name Address City State ZIP Code INSTRUCTIONS FOR NOTARIZATION Residents of Iowa and Minnesota may have the document signed by a notary public authorized in their state instead of having two witnesses. Notary Public In my presence on, Date Printed Name acknowledge the patient s signature on this document or that he or she authorized the person signing this document to sign on his or her behalf. I am not named as a healthcare agent or alternate healthcare agent in this document. (Notary Stamp) Signature of Notary 67

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75 APPENDIX 3: DESIGNING YOUR ACP SYSTEM INFRASTRUCTURE - THE MEDICAL RECORD SYSTEM DESIGN ELEMENTS 1. The paper medical record system should include the following elements: a clearly marked section of the paper medical record designated so that any AD documents or related materials can be reliably stored and retrieved by any health professional caring for the patient; review of the written documents for accuracy of completion by trained staff as they are being entered into the medical record; acceptance of any type of document (statutory or non-statutory) that includes preferences for future medical care; and approved form to document ACP discussions, record provision of information, and record entry of written plans. 2. The electronic medical record system should include the following elements: prompts for health professionals to initiate conversations with patients; storage and retrieval of written plans and documents; retrieval of physician dictations about ACP discussions and potential end-of-life treatment decisions; mechanism to make referrals to qualified ACP facilitators; routine reviews with patients about ACP activities and need for assistance; access to ACP resources e.g., educational materials, and forms; access to ACP guidelines for healthcare professionals; and identification of patient s decision-making capacity and chosen healthcare agent, including legal activation of a power of attorney for healthcare. 69

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77 APPENDIX 4: AD REVIEW AND ENTRY ADVANCE CARE PLANNING FLOWCHART ENTERING ADVANCE DIRECTIVE INTO THE MEDICAL RECORD How is advance directive presented? Delivered by person to clinic, hospital Completed by Advance Care Planning Facilitator Outpatient Completed by Advance Care Planning Facilitator Inpatient Brought to organization by relatives Transferred from another health care facility Review document for accuracy & completeness: 1. POA documents dated and signed by principal and witnesses 2. Witnessing criteria met 3. Absence of ambiguous preferences 4. Nursing home & tube feeding statements addressed YES Document is complete & accurate? NO Make corrections as needed Does a previous AD exist? Does person have a Medical Record/Chart? YES Obtain Chart NO Activate procedure to make a new chart Notify physician of red flags in AD (new NO CPR preferences; lack of knowledge regarding medical condition; personal information requiring physician investigation) YES NO Take previous AD out of chart Send back to patient with letter Enter AD on Advance Care Planning Record Place AD and ACP record in green sleeve Put green sleeve in front of Medical Chart Sent patient letter confirming receipt of AD 71

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79 APPENDIX 5: ACP ADMISSION ASSESSMENT FLOW MAP ACP Assessment Yes System Decision: Is POAHC activated? OR Does patient have a Legal Guardian? No Patient's Legal Guardian or activated POAHC have been entered into medical record. Contact agent or guardian. Inform and provide patient s rights and responsibilities. Confirm accuracy of contact information. Yes Is the patient capable of making his/her own decisions? No Go to Flow A Go to Flow B 73

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81 ACP ADMISSION ASSESSMENT FLOW MAP ACP Assessment Flow A Yes System Decision: Is a POAHC entered? No Does the document still reflect the patient's preferences? Ask that the documentation be brought in. Note to nurse: 1) hospital - contact social worker once brought in 2) clinic send to HIM Yes Have you ever written down any thoughts about future medical care? No System decision: Is a decision maker entered? No Yes Confirm that the decision maker information is correct on the main ACP page No Notification sent to Pastoral Care. Statement: If changes are to the patient's CPR preference or if the patient is not a full code, notify the physician. Yes Display Closing Done Statement: Record decision makers name and number on the main ACP screen Yes Do you want to select a decision maker if you should become unable? (include decision maker definition No Type of assistance needed: Same Day Future (include definition in spec) No Outpatient: Are you able to schedule an ACP appointment with a facilitator in your department or clinic? Inpatient: select No Yes Do you want to talk to somebody about advance care planning? Yes Request to be sent to Pastoral Care Make arrangements/ schedule appointment Statement: Distribute appropriate materials No Yes Would you like to receive education materials? No Is there anything else we need to know about your preferences? No Display Closing Done Yes (document verbal preferences) Statement: Notify physician of verbal preferences. Display Closing Done 75

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83 ACP ADMISSION ASSESSMENT FLOW MAP ACP Assessment Flow B System Decision Patient is not capable of making own decisions POAHC Medical Record ** Not Activated ** No POAHC OR Legal Guardian in Medical Record Does patient or representative state that there is a legal guardian of person named (not guardian of finances)? Yes Yes Does patient or representative state that there is a legal guardian of person named (not guardian of finances)? No No Consult MD about activation Ask that the documentation be brought in. (Note to nurse: contact a social worker once brought in) Yes Has a POAHC been completed or documented somewhere else? No Confirm that the decision maker information is correct on the main ACP page. Yes System Decision: Is a decision maker entered? No Inform and provide family contact of patients rights and responsibilities. Identify and document (on main ACP page) a family contact who can assist in decision making. Display Closing Done 77

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85 APPENDIX 6: THE TEAM APPROACH TO ACP- DEFINING ROLES AND RESPONSIBILITES Once leaders select their ACP team, they must define roles and responsibilities so each person understands the expectations and ways to work together effectively. Following is a description of a variety of ACP team roles with related responsibilities. THE ROLE OF THE ADVANCE CARE PLANNING FACILITATOR Certified ACP facilitators come from many backgrounds: medicine, nursing, social work, pastoral care, law, faith communities, and volunteer organizations. Facilitators use the education and skills provided in the Respecting Choices ACP Facilitator Certification programs in many ways. Depending on their experience, education, background, interest, and role within the organization or community, they choose to attend a First Steps, Next Steps, or Last Steps ACP Facilitator certification program. It is critically important to identify the roles needed within an organization and community and then determine who is best qualified or able to fill these roles. ACP Facilitator Responsibilities initiate opportunities for ACP discussions at multiple encounters and throughout the lifespan of an individual assess the needs of the individual seeking ACP assistance design an individualized ACP approach based on the patient s illness, readiness to participate, fears and concerns, religious or cultural beliefs, among other variables make referrals to other resources as identify during the assessment assist patients in making informed healthcare decisions based on understanding, refection, and discussion prepare and strengthen the role of the patient s chosen healthcare agent assist in the development of a plan that honors the patient s goals, values, and beliefs for future medical care develop strategies to effectively communicate the plan to those who will be responsible for interpreting it and making decisions consistent with the patient s goals, values, and preferences (e.g., family, physician, and other healthcare providers) provide formal and informal community education coordinate ACP activities within an organization or community assist with the development and implementation of organizational systems that support ACP objectives provide emotional support to patients and families struggling with end-of life decisions conduct performance improvement activities to continually evaluate quality outcomes related to advance care planning 79

86 THE ROLE OF THE PHYSICIAN IN ACP Some might argue that ideally, physicians would be completely responsible for ACP discussions and there are many reasons to support this position. However, there are many obstacles to making it work in the real world. First, many adults see more than one physician, but physicians generally will engage in ACP discussions with only those patients with whom they have developed a close professional relationship. Second, many physicians do not want to do this type of facilitation, or they do not feel they can do a particularly good job of it. Finally, since physician time is at a premium in most settings, ACP discussions may not be a priority. A team approach to advance care planning facilitation is a more realistic approach. For example, physicians might initiate discussion and provide information related to the patient s medical condition. These discussions can motivate patients to undertake end-of-life treatment planning, as well as help them make final decisions based on their health condition and treatment options. But between these beginning and ending conversations, patients often need help with basic information, values clarification, discussions with loved ones, and documentation of preferences. While these activities can certainly be carried out by physicians, they can also be performed by other adequately prepared facilitators. Respecting Choices attempts to address these physician concerns by focusing efforts on improving patient understanding, reflection, and discussion of end-of-life issues with the health professionals providing care. Physicians generally have fewer objections to these goals and realize that when legal documents are completed as part of this process, patients and their loved ones have a reasonable understanding and agreement about what decisions will be made. Finally, the Making Choices patient education materials, through their common name and image on booklets and posters, make it clear to patients that this advance care planning work is sponsored by the organization, is part of good care, and is not the individual bias of a physician. Patients and their families, therefore, can benefit from multiple resources that are committed to improving care at the end of life. Physician Responsibilities initiate ACP discussions as appropriate provide information and clarification of patient s medical condition provide educational materials to assist with advance care planning make referrals to ACP facilitators as needed review and clarify patient s written plans document ACP discussions convert patient s preferences to medical orders as appropriate 80

87 THE ROLE OF THE RN IN ACP The role of the registered nurse (RN) in ACP has often been overlooked or avoided. While implementing the federally mandated Patient Self-Determination Act, many organizations assign admissions personnel to ask the patient if they had an advance directive. In complying with the law, these organizations lost opportunities for educating patients and initiating conversations. Many establishments have since reassigned this responsibility to the admitting RN. Unfortunately, this reassignment has often disregarded appropriate education, communication techniques, or interventions that may be required in gathering information from patients and their families. While it is understood that RNs sometimes do not have time for in-depth discussions and must refer patients to facilitators, they can still do a lot to engage patients in advance care planning. RN Responsibilities assess patient s need for information initiate conversations when cues arise provide accurate information about medical conditions and proposed treatment interventions as appropriate make referrals to other resources as needed assist with communicating patient s preferences advocate for a plan of care consistent with patient preferences ensure compliance with federal regulations (e.g., Patient Self Determinations Act) and The Joint Commission implement organization specific policies and procedures THE ROLE OF PASTORAL CARE Respond to referrals from interdisciplinary team members to review and enter existing AD documents, and assist in completion of documents. Provide emotional, spiritual, and religious support to patients and families who are struggling with end-of-life decisions. Assist patients and families in discerning ACP preferences and communicating them to appropriate healthcare providers. Make referrals to other interdisciplinary team members as needed. Provide community education. Maintain ACP materials. Coordinate the orientation of volunteer ACP team members. 81

88 THE ROLE OF THE SOCIAL WORKER Respond to referrals from the ACP team to review and enter existing AD documents, and provide information and assistance with document completion. Assist patients and families in discerning their ACP preferences and communicating them to appropriate healthcare providers. Make referrals to other interdisciplinary team members as needed. Provide assistance with financial planning related to ACP as appropriate. Assess an individual s ACP needs. THE ROLE OF THE VOLUNTEER Distribute ACP educational materials as appropriate. Make referrals to other resources as appropriate. Assist individuals in completing a power of attorney for healthcare (POAHC) document. Review and enter a completed POAHC document into the medical record. Document activities per organizational protocol. 82

89 APPENDIX 7: ACP REFERRAL INTAKE TOOL A) REFERRAL INTAKE SECTION (to be completed by person receiving patient phone call) Date Intake person name Name/location/ ext. of caller Name/location of patient If patient is hospitalized, room number B) TRIAGE SECTION If caller requests same day response, the request should fit at least one of the following criteria after being assessed by an RN or MD: Is patient demonstrating acute clinical signs of decline? Is patient scheduled for a procedure that requires general anesthesia or conscious sedation in next 24 hours? Will patient be unable to make decisions within days to weeks after this procedure, versus. recovering completely? Is patient s medical condition likely to result in permanent cognitive incapacity in next 24 hours? If patient fits above criteria, notify an available facilitator to respond to the need. C) FUTURE NEED SECTION Home phone number of patient Address of patient Primary MD s name: Specialty MD s name: Does patient have a prior AD? Yes No Unknown Is previous document in electronic record? Yes No Has any ACP information been given to patient already? Yes No 83

90 D) ASSIGNMENT SECTION NOTE: Refer to decision tree protocol for prioritization of appropriate facilitator. Assigned to facilitator (name) (extension) Transportation or interpreter arrangements RESULTS OF PATIENT ENCOUNTER: (To be completed by trained facilitator) NAME OF FACILITATOR: DATE of PATIENT ENCOUNTER: (check all that apply) Information and follow up number given to patient or family Document witnessed only Document completed while present Document reviewed only Document reviewed and entered into CWS Document entered only (into CWS) Total time spent on patient encounter 84

91 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G CHAPTER 3 BUILDING YOUR ACP PROGRAM KEY ELEMENT #2: ACP FACILITATION SKILLS, EDUCATION AND TRAINING 85

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93 CHAPTER 3 BUILDING YOUR ACP PROGRAM: KEY ELEMENT #2: ACP FACILITATION SKILLS, EDUCATION AND TRAINING INTRODUCTION Evidence exists that standard approaches to the completion of AD documents like living wills and powers of attorney for healthcare have failed, while the Respecting Choices method has had success. This is due to its multifaceted, systematic approach that extends beyond the completion of documents. One of the key elements driving this success is the adoption of standardized ACP facilitation skills education and training programs that prepare individuals to facilitate ACP discussions. Our ACP programs emphasize interview and communication techniques. Such an emphasis is consistent with the growing recognition that (1) ACP efforts must shift from a focus on document completion to communication strategies necessary to assist individuals in making informed healthcare decisions and (2) successful ACP is an ongoing process of patient care embedded within a healthcare delivery system (Prendergast, 2001; Wenger, Shugarman, & Wilkinson, 2008). This chapter describes how Respecting Choices ACP facilitation skills training is different from standard approaches and why it has hada consistent, positive outcomes. We review the reasons why other programs have failed. The core concepts and teaching strategies of the Respecting Choices ACP programs are described in order to clearly distinguish them from standard approaches to the completion of ADs. We describe three training programs and the role of the ACP facilitator, a role we recommend be adopted and integrated as a component of a successful ACP program. STANDARD APPROACHES TO AD COMPLETION HAVE FAILED There is clear and convincing evidence that the majority of Americans have not completed an AD. In fact, only 18 to 36 percent of Americans have accomplished this important task, despite awareness and widespread community educational campaigns spanning years (Brown, 2003; Hawkins, Ditto, Danks, & Smucker, 2005; Hickman, Hammes, Moss, & Tolle, 2005; Jennings, 2005). More distressing is the finding that only one in three patients living with serious chronic illness have developed written plans regarding future treatment decisions, despite the predictable complications and decision-making crises they and their families will face (Bravo, Dubois, & Paquet, 2003; Kish, Martin, & Price, 2000). Some studies have demonstrated higher completion rates of Ads, but report that ADs have limited effectiveness in improving end-of-life care. For example, a national mortality follow-back survey of bereaved family members found a 70 percent incidence of written ADs among decedents, yet the survey revealed significant gaps in the quality of end-of-life care decedents received (Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007). When written plans are created, many physicians and healthcare agents are unaware they exist (Kass-Bartelmes, Hughes, Rutherford, & Boches, 2003). Most importantly, even when plans are 87

94 available, they are often not helpful because (1) designated healthcare agents are not prepared to make substituted decisions, often choosing more aggressive care than the patient would choose; and (2) instructions are too vague or ambiguous to guide specific clinical decisions (Fagerlin, Ditto, Danks, Houts, & Smucker, 2001; Fagerlin & Schneider, 2004; K. Lorenz et al., 2004; K. A. Lorenz & Lynn, 2004; Shalowitz, Garrett-Mayer, & Wendler, 2006; Teno, 1998). The standard approaches to the completion of ADs have focused on the creation and implementation of statutory forms, required disclosures, language and witnessing criteria, mandated questions on admission to a healthcare facility, and document completion. This legal (or just get it done ) approach is implemented by busy healthcare providers or others who have minimal training in communication techniques. The approach typically focuses on meeting the minimum requirements of disclosure to comply with the guidelines in the Patient Self-determination Act or The Joint Commission ( There are many reasons why the standard approaches have failed. Helping patients and families navigate complex and often confusing choices regarding future medical care requires communication and facilitation skills that are often ill defined and undervalued by organizational leaders. Many healthcare professionals remain uncomfortable with such conversations; they may lack preparation, skill, time, and reimbursement. Some may also display emotional responses that inhibit their ability to initiate ACP discussions at appropriate and timely stages in a person s healthcare (Christakis, 1999; Legare, Ratte, Gravel, & Graham, 2008; Scherer, Jezewski, Graves, Wu, & Bu, 2006; Weiner & Roth, 2006; Yedidia, 2007). This history of inadequate ACP education and training for professionals has resulted in consequences. Many healthcare providers focus on the completion of the AD document, on clarification of terminology (e.g., living wills and medical powers of attorney), or on isolated treatment decisions (e.g., Do Not Resuscitate), rather than on communication skills. Such skills are needed to help individuals understand treatment options, explore experiences that may help guide treatment decisions, or assist in weighing benefits and burdens against individual goals and values. The simplistic and narrow focus that many healthcare professionals have on the completion of AD documents has resulted in more confusion than clarity and often leads to the assumption that planning is done. Documents completed without individualized communication often lead to vague instructions, ambiguous or contradictory statements that can make decision making more difficult, and an inability to honor patient preferences for end-of-life care (Making healthcare safer: A critical analysis of patient safety practices, 2001; K. A. Lorenz & Lynn, 2004; Teno et al., 1997). Therefore, this approach to planning can actually do more harm than good. Given the disappointing outcomes of standard AD efforts, some have recommended that these efforts be abandoned (Fagerlin & Schneider, 2004). Unfortunately, this recommendation is often interpreted to include more robust ACP efforts, such as those offered in the Respecting Choices approach. It is important to note that most studies done on the effectiveness of ADs have focused only on the completion of documents (e.g., living wills, medical powers of attorney) rather than on the effectiveness of facilitated ACP discussions (Teno et al., 2007). 88

95 Recognition of the failure of past AD efforts is clearly acknowledged in the ADs and Advance Care Planning Report to Congress (Wenger et al., 2008). To improve end-of-life care, the report calls for a shift from the narrow focus on document completion to the more robust ACP process of communication and ongoing discussion. In order to meet this call for action, organizations must invest in effective ACP facilitation programs. Effective programs emphasize communication strategies and patient-centered interview techniques that help motivate individuals to participate in ACP and assist them in developing a clinically useful plan that for future medical care. THE RESPECTING CHOICES APPROACH TO ACP FACILITATION SKILLS TRAINING WORKS Respecting Choices has a long history of designing education and training programs that legitimize and define the role of the ACP facilitator and the corresponding competencies required to guide patients and families through their unique decision-making process. We have developed competency-based training programs to help ACP facilitators acquire a defined skillset and adapt to a variety of clinical settings. Contrary to the clear and convincing evidence that standard approaches to AD completion have failed, the Respecting Choices model of facilitated ACP discussion has consistently resulted in the following positive outcomes: Facilitated ACP discussions, as a component of a comprehensive organization and community ACP program in La Crosse, Wisconsin, result in a high rate of AD completion with preferences outlined in these ADs followed at end of life (Hammes & Rooney, 1998; Hammes, Rooney, & Gundrum, 2010). Similar findings have been demonstrated in replication studies of the Respecting Choices model in the United States and Australia (Detering, Hancock, Reade, & Silvester, 2010; Schwartz, Merriman, Reed, & Hammes, 2004). In a pilot trial and randomized controlled study of the Respecting Choices facilitated disease-specific ACP interview, the rate of patient-surrogate agreement concerning patient preferences about goals of care was significantly higher in the intervention group than in the control group, with the intervention patients highly satisfied with the discussion (Briggs, Kirchhoff, Hammes, Song, & Colvin, 2004; Kirchhoff, Hammes, Kehl, Briggs, & Brown, 2010). A pilot study of the facilitated disease-specific ACP interview in preoperative open heart surgical patients resulted in a significant increase in agreement between the patient and surrogate concerning patient preferences in the intervention group, with no difference in anxiety between the intervention and control groups (Song, Kirchhoff, Douglas, Ward, & Hammes, 2005). A pilot study of the facilitated disease-specific ACP interview in a randomized, controlled trial of mostly African American, medically stable adolescents with HIV/AIDS,showed increased agreement between patient and parent/guardian in the intervention group, as well as feelings of being better informed and supported (Lyon, Garvie, McCarter et al., 2009). 89

96 A common thread in all these studies is the facilitation of ACP discussions by trained, certified Respecting Choice facilitators. We believe the consistently positive findings would not have been possible without competency-based, standardized ACP facilitation skills training. The core theoretical concepts and teaching strategies integrated in the Respecting Choices ACP curricula are effective in reliably and consistently preparing participants to provide highly skilled ACP facilitation in many patient populations and healthcare settings. FIRST STEPS FACILITATOR CERTIFICATION TRAINING PROGRAMS: THEORETICAL CONCEPTS AND TEACHING STRATEGIES The First Steps Facilitator Certification training programs have been tested, evaluated, and refined for over a decade. Our approach to training and skills development is similar to the rigorous and standardized methods used in cardiopulmonary resuscitation (CPR) and advanced cardiac life support (ACLS) certification programs, which focus on attaining and maintaining specific competencies to deliver quality care with improved outcomes. We believe patients and families struggling with healthcare decisions deserve ACP facilitators who are certified in a standardized manner in order to deliver a consistent service. To achieve the goal of ACP facilitated competency and certification, we have embedded several teaching strategies consistent with the core theoretical concepts of Respecting Choices into all of our certification programs. (The reader is encouraged to review the theoretical concepts described in Chapter 1 of this manual. These concepts have guided the development of teaching strategies that promote a rich and robust learning experience for participants, increase the likelihood that basic competency will be achieved, and contribute to positive outcomes for patients and families.) These concepts and strategies include: 1. Integration of ACP as a process of understanding, reflection, and discussion. As discussed in Chapter 1, this ideology is inherently and importantly different from merely the completion of AD documents. Facilitators learn to incorporate this definition of ACP through a defined set of interview skills that assess an individual s understanding of ACP, why it is important, current health condition and related complications, treatment options, and related benefits and burdens. This assessment assists the facilitator in individualizing the ACP discussion. For example, ACP for a healthy adult is focused on motivating the person to participate, on choosing a healthcare agent, and on creating and communicating a basic plan for future medical decision making. ACP for patients with life-limiting illness involves assistance understanding specific treatment options related to the course of the illness and related complications; help individuals to reflect on personal goals, values, and beliefs and corresponding treatment options and decisions; and encourage discussions with others (e.g., family, physician, religious advisor) as necessary to provide information and guidance to the patient when making healthcare decisions. 90

97 2. Integration of skills consistent with the theoretical concepts of the Respecting Choices model outlined in Chapter 1. These concepts and related facilitator skills include: The Doctrine of Informed Consent. Since ACP is an informed consent process, facilitators must learn skills to assess patient understanding of their current health condition and, if ill, the trajectory of their disease, including potential complications, treatment options (including benefits and burdens), and alternatives to treatment. These types of skills help identify gaps in understanding that must be corrected before informed decisions can be made. Having such informed consentual discussions requires a high level of knowledge and skill, including knowing when to refer the individual to others who can provide needed information. The Adult Learning Principle of Engagement. Consistent with the theories of transtheoretical change and motivational interviewing, facilitators must learn engagement strategies that inspire people to participate in ACP (Miller & Rollnick, 2002). These engagement strategies are uniquely different from the standard approach of simply asking patients if they want to complete an AD or notifying them that they have a right to do so. Many patients have barriers to full participation in ACP, such as personal beliefs, lack of information, and feeling it is too difficult (Schickedanz et al., 2009). Unless these barriers are identified and addressed, patients are often unwilling to accept assistance, have discussions, or complete ADs. Facilitators learn to assess individuals motivations, fears, worries, and barriers during initial ACP discussions. Once identified, the facilitator can address these issues to help patients feel more comfortable with fully participating in the ACP process. Facilitators also learn to develop appropriate follow-up appointments and plans as needed. Narrative Ethics. Facilitators learn communication strategies consistent with patientcentered interview techniques in order to elicit the patient s story of illness progression, end-of-life experiences, and past hospitalizations. For example, exploring the patient s experiences with family and friends who have been seriously ill allows him or her to verbalize goals, values, and beliefs related to those experiences. Providing opportunities for patients to tell their stories is effective in gaining trust and mutual understanding, and promotes an environment of support and guidance in the decision-making process. Ethics of Caring Relationships. Respecting Choices views the ACP process as an ethics of care rather than an ethics of rights. While ACP originated from the rights of individuals to make their own decisions (i.e., autonomy), most patients are concerned about receiving good care and about how their decisions will affect close and loving relationships. Facilitators learn multiple strategies to integrate an ethics of care when facilitating ACP discussions. Facilitators also learn techniques to assist individuals in choosing qualified healthcare agent(s), include agents and other family members in ACP discussions, and facilitate an atmosphere of open communication. The goal of these strategies is to strengthen the role of the healthcare agent through intimate involvement in ACP discussions, thus promoting a shared decision-making environment (Briggs et al., 2004; Fins et al., 2005). Using the ethics of caring helps facilitators address the cultural, religious, and personal beliefs that may affect healthcare decision making and create an individualized ACP approach that is respectful of these beliefs. 3. Competency-based education. We define competency as having the knowledge, skills, and attitude to assist others in making informed healthcare decisions. As a prerequisite to attending ACP classroom programs, participants complete a self-paced online ACP facilitator course. This 91

98 online course was developed to provide basic knowledge (e.g., definitions of ACP and AD terminology), to identify initial skills (e.g., basic interview questions to initiate ACP discussions), and to foster critical thinking applications (e.g., case scenarios that provide real-life application). The online course sets the stage for participants to focus on skill acquisition and beginning competency in the classroom setting. 4. Armed with baseline knowledge, participants attend the classroom component, to learn the skills of ACP facilitation through competency skills checklists, video demonstrations, practice role-play sessions, and question and answer sessions. This blended learning format has been offered since 2006 and has garnered positive ratings from participants. Respecting Choices faculty and instructors have identified the significant impact this type of pre-course preparation has on participants ability to immediately engage in classroom activities, ask questions, think critically, and demonstrate beginning competency. Each of these concepts and teaching strategies interacts to produce a rich and rewarding learning experience for participants not previously exposed to structured and supportive communication skills training programs. The content, strategies, and techniques in the Respecting Choices ACP facilitator training programs are updated on a regular basis, integrating evidence-based practices and a well-researched and clinically tested tools and materials. The majority of participants are able to transfer their newfound knowledge and skills into their clinical or community setting and, with practice and time, achieve a level of mastery that is professionally rewarding. Case study simulations provide valuable opportunities to role-play ACP skills and to learn effective communication strategies. Experienced ACP facilitators can act as mentors, observing performance and providing immediate feedback on areas of skill development. Competency checklists are used to define the expected behaviors and provide an objective tool for learning and feedback. RESPECTING CHOICES STAGES OF PLANNING APPROACH Respecting Choices has developed a staged approach to ACP called First, Next, and Last Steps. This unique planning approach is based on an individual s stages of health, readiness to learn, and venue of care. First Steps ACP: All adults over the age of 55 are invited to learn about ACP, encouraged to select a surrogate decision maker, and assisted in completing written ADs. The AD includes the identification of basic goals for lifesustaining treatment if they should suffer a severe neurologic illness and are unlikely to recover. This type of ACP can begin as part of routine annual physical examinations by primary healthcare providers (e.g., physician, nurse, patient representative), and also by community leaders (e.g., clergy, advocates for seniors, parish nurses) who become trained as ACP facilitators to offer this service within the community at large. This 92

99 stage of First Steps ACP is the basic foundation for weaving ACP discussions into the routine of good patient care and preventive healthcare for all adults. When integrated in the outpatient or community setting and early in the course of healthcare, these types of discussions help to normalize the concept of planning, and orient individuals to the importance of regular review and update of written plans. Next Steps or Disease-Specific Advance Care Planning (DS-ACP): Patients with chronic, progressive illness typically experience a decline in their health status as they approach the last few years of life, accompanied by functional decline, hospitalizations, emergency department visits, and associated comorbidities (Lunney, Lynn, Foley, Lipson, & Guralnik, 2003). These events act as triggers for healthcare providers managing the care of these patients to initiate a Next Steps ACP discussion. During this stage of planning, patients are guided to understand the progression of their illness, potential complications, specific life-sustaining treatments that may be required related to their illness progression, the benefits and burdens of these treatments, and alternatives to treatment. As part of the ongoing ACP process, Next Steps provides an opportunity for qualified ACP facilitators (e.g., nurses, social workers, chaplains with experience in disease management) to reassess the patient s goals for living well and preferences for life-sustaining treatment that may have changed with the decline in their health (Briggs et al., 2004; Wittink et al., 2008). In this stage of planning, patients receive assistance with completing a more specific written plan (e.g., a Statement of Treatment Preference form) that identifies goals of care in real clinical situations of low survival and cognitive and functional impairment. Research indicates that patients with life-limiting illness require information on treatment options, outcomes, and chances of survival in order to make informed end-of-life decisions (Fried & Bradley, 2003). The Statement of Treatment Preference form provides decision-making guidance to chosen healthcare agents and providers in the event that the patient suffers complications from the illness and/or a trial of treatment results in an outcome the patient has identified as unacceptable. Last Steps ACP: The POLST system for documenting and communicating an individual s decisions for end-of-life care as he or she approaches the last year of life has become recognized as best practice for frail elders and those living in long-term care facilities. Lifesustaining treatment decisions must be specific and include options for hospitalization and the provision of comfort care. POLST-trained facilitators are often social workers or nurses responsible for developing plans of care for residents of long-term care facilities, home health, or hospice. Without an emphasis on the importance of ACP discussions and qualified facilitators, implementation of the POLST form runs the risk of repeating the failures of past standard AD efforts that have focused only on form completion (Teno, 1998). In summary, advance care planning (First Steps, Next Steps, and Last Steps) provided by qualified and trained facilitators can be effectively woven into the system of referrals available to any healthcare professional, patient, or interested member of the community. As systems are developed to hardwire these referrals for appropriately staged and timely ACP facilitation, a reliable mechanism is created to provide individualized and patient-centered ACP discussions, revisit goals and values as illness progresses, revise written plans as necessary, and communicate these plans effectively so that patient decisions for end-of-life care are honored. 93

100 RESPECTING CHOICES ACP FACILITATION: SKILLS EDUCATION AND TRAINING PROGRAMS We have designed three unique ACP facilitator certification programs to address the needs of patients with differing health states and in a variety of healthcare settings. A brief overview of each program follows with more detailed program descriptions in the appendices of this chapter. First Steps Facilitator Certification (Appendix 1, page 103). This program assists participants in learning the skills necessary for basic (First Steps) ACP discussions for any adult. This includes skills to (a) initiate the importance of ACP; (b) select a qualified healthcare agent; discuss goals, values, and beliefs; and c) create a basic written AD or other type of plan to ensure preferences are communicated and honored. Disease-Specific Facilitator Certification (Appendix 2, page 105). This program is intended for qualified professionals to learn communication techniques to deliver an indepth, structured, disease-specific ACP interview. This stage of ACP (Next Steps) is focused on patients with chronic, progressive illness who are beginning to experience a decline in their healthcare status and/or complications requiring more specific treatment decisions. POLST Facilitator Certification (Appendix 3, page 107). This program assists participants in learning the skills necessary to have end-of-life discussions (Last Steps) for frail elders or those living in long-term care facilities using the POLST communication system to transfer patient decisions into medical orders that can be honored throughout the healthcare continuum. THE ROLE OF THE ACP FACILITATOR Participants who successfully complete all requirements of one of the ACP training programs receive certification as an ACP facilitator for a specific stage of planning. This certification provides evidence the participant has the beginning knowledge, skills, and attitudes to facilitate ACP discussions. Certified ACP facilitators come from many backgrounds: nursing, social work, pastoral care, law, faith communities, and volunteer organizations. Organizations will need to identify their team of ACP facilitators who will be available to provide appropriately staged and qualified ACP facilitation. The goals of this ACP service are to deliver a consistent and reliable ACP service that meets the needs of various patient populations in different healthcare settings; promote informed healthcare decisions; assist in the development of effective plans that honor an individual s goals, values, and beliefs for future medical care; improve patient and family satisfaction with the healthcare experience and, in particular, end-of-life care; and promote professional satisfaction. We cannot overstate the value of the ACP facilitator role (Appendix 4, page 109). At Gundersen Health System, we witness the power of this role through the timely and appropriate referrals for this service, 94

101 the informed choices patients and families make, the overwhelmingly positive patient and family response to this service, and the professional reward in providing skilled facilitation and delivering care that is consistent with patient goals, values, and beliefs. While the focus of the ACP facilitator role is to provide qualified assistance to patients and families as they move through the ACP process, there are other responsibilities they may assume. Facilitators use the education and skills provided in the Respecting Choices ACP facilitator skills programs in many ways, depending on their experience, education, background, interest, and role within the organization or community. It is critical to identify the roles needed within an organization and community and to then determine who is best qualified or able to fill them. ACP facilitators may be responsible for any of the following tasks: provide formal and informal community education, coordinate ACP activities within an organization or community, assist with the development and implementation of organizational systems that support ACP objectives, provide emotional support to patients and families struggling with end-of life decisions, and conduct performance improvement activities to continually evaluate quality outcomes related to advance care planning. At Respecting Choices, we advocate the adoption of the ACP facilitator as an emerging and vital role essential to the success of your ACP initiatives. In today s world, we could not imagine a healthcare system that does not support the role of the ACLS team, whose members are certified, who have identified roles and responsibilities, and who maintain their skills through ongoing education and skill assessment. The success of the ACLS team is monitored continuously for quality outcomes and improvement opportunities. This extensive and important commitment to a qualified team of ACLS providers occurs despite the fact that, at best, CPR is successful (defined as survival to discharge) in 18 percent of hospitalized patients (Ehlenbach et al., 2009). We believe that organizations and communities should support ACP teams, just as they support ACLS teams. Not only would this ACP service be of benefit to every patient and family, but it would produce outcomes that far exceed current expectations. ACP EDUCATION AND TRAINING FOR OTHER STAKEHOLDERS Disseminating the concepts of ACP to a host of other healthcare workers (e.g., nurses, social workers, clergy, and volunteers) in the organization or community is a programmatic necessity, but also an educational challeng. All staff working in healthcare organizations must become knowledgeable about the basic concepts of ACP, the policy and practices within their organization, individual roles and responsibilities, how to identify individuals in need of ACP assistance, and the process for making referrals to qualified ACP facilitators. For example, registered nurses at the bedside may not be responsible for completing AD documents or having in-depth ACP discussions, but they can apply their 95

102 ACP knowledge and skills in order to identify patients in need of ACP, clarify statements and concerns, provide information as appropriate, advocate for the patient s stated preferences, and make referrals to others as necessary. Staff can be educated on the ACP program in many ways. Designing, scheduling, and offering educational programs to appropriate staff are time-consuming, yet the need for such education is ongoing. For years, Gundersen Health System included an overview of the ACP program in a 20-minute presentation during orientation for all employees. New staff members were given information on the importance of ACP for themselves and their families, materials to assist them in this process, and a description of the ACP team and referral system in the organization. This educational strategy required significant resources and time. Thus, in order to meet the continuing challenges of educating this large and diverse population, Respecting Choices developed online ACP programs that can be offered more efficiently and whenever staff wants to learn. The following courses have been designed to provide information on ACP, assisting the learner in building basic skills: BASIC CONCEPTS IN ADVANCE CARE PLANNING This half-hour training program provides basic information about ACP for any employee working within a healthcare organization. It clarifies the difference between ACP and ADs and reviews the components of basic healthcare planning for adults. Regulatory and policy issues are addressed, and learners are encouraged to become familiar with the ACP procedures and resources within their organization or community. RN CONCEPTS (THE ROLE OF THE NURSE IN ACP) As a follow-up to the basic concepts of the ACP online program, this half-hour course specifically focuses on the role of the nurse. It identifies ACP competencies and assists nurses in understanding their responsibilities in such areas as identifying a patient s need for medical information, providing basic information on ACP, advocating for the patient s expressed wishes, and making referrals. These online courses can be complemented by other activities necessary to assist all members of the ACP team in gaining competency. Consider the following examples: Review organizational policies, forms, roles, and responsibilities. Simulate case scenarios in which real-life examples are presented and participants are asked to role-play how they would apply newly acquired knowledge. Case scenarios should be designed to address the priority expectations and avoid complex or confusing examples. The goal is to assist learners in practicing new skills and developing their own language and increasing their comfort level. Write scripts. Use of scripts for specific situations provides an opportunity for an individual to learn new language, assess how to deliver the information, and adapt a script accordingly. 96

103 Review case studies. This strategy provides an opportunity to learn from past positive and negative experiences. Actual cases are presented that allow participants to evaluate the interventions that occurred, to suggest additional strategies that could have been effective, and most importantly, to learn from the experiences of others that may better prepare participants for future encounters. Tell stories. The experiences of professionals who have engaged in ACP discussions can be powerful tools for learning. Other stakeholders will need information on the ACP program being developed in order to support the implementation efforts and make appropriate and timely referrals. These include physicians not associated with the ACP team or implementation sites; non-professionals such as volunteers within the organization; attorneys who provide assistance and advice for AD completion; and community groups (e.g., AARP) that provide healthcare resources. The training programs for these stakeholders need to be succinct and focused on describing their role, your ACP program, available materials (ACP booklets, videos) and where they can be accessed, and how to make referrals to qualified ACP facilitators. In these types of training programs, it is helpful to incorporate tools videos, role-play demonstrations, or written scripts to assist them in fulfilling their future role. An example of an ACP presentation to physicians that integrates content and experiential types of learning strategies is provided in Appendix 5, page 111 of this chapter. Providing the appropriate level of ACP facilitation skills training to a variety of stakeholders is challenging. Additionally, once the ACP team is defined and educated, strategies must be designed to ensure that individuals maintain their ACP facilitation skills and continue to integrate them into their professional practice. In summary, this chapter outlined the reasons why standard approaches to the completion of ADs have failed and why it is imperative that more effective approaches be designed and integrated into the fabric of healthcare. Consistent with national recommendations, new approaches must include training and educating professionals in the requisite interview and communication skills crucial to effective ACP discussions. Respecting Choices has a long and successful history of developing competency-based ACP facilitation training programs that assist in producing positive outcomes, are satisfying to patients and families, and are effective in hardwiring an organization s ability to deliver a consistent and reliable ACP service. 97

104 REFERENCES Bravo, G., Dubois, M. F., & Paquet, M. (2003). ADs for health care and research: Prevalence and correlates. Alzheimer Disease and Associated Disorders, 17(4), Briggs, L. A., Kirchhoff, K. T., Hammes, B. J., Song, M. K., & Colvin, E. R. (2004). Patient-centered advance care planning in special patient populations: A pilot study. Journal of Professional Nursing: Official Journal of the American Association of Colleges of Nursing, 20(1), Brown, B. A. (2003). The history of ADs. A literature review. Journal of Gerontological Nursing, 29(9), Christakis, N. A. (1999). Death foretold: Prophecy and prognosis in medical care. Chicago: University of Chicago. Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ (Clinical Research Ed.), 340, c1345. Ehlenbach, W. J., Barnato, A. E., Curtis, J. R., Kreuter, W., Koepsell, T. D., Deyo, R. A., et al. (2009). Epidemiologic study of inhospital cardiopulmonary resuscitation in the elderly. The New England Journal of Medicine, 361(1), Fagerlin, A., Ditto, P. H., Danks, J. H., Houts, R. M., & Smucker, W. D. (2001). Projection in surrogate decisions about lifesustaining medical treatments. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 20(3), Fagerlin, A., & Schneider, C. E. (2004). Enough. The failure of the living will. The Hastings Center Report, 34(2), Fins, J. J., Maltby, B. S., Friedmann, E., Greene, M. G., Norris, K., Adelman, R., et al. (2005). Contracts, covenants and advance care planning: An empirical study of the moral obligations of patient and proxy. Journal of Pain and Symptom Management, 29(1), Fried, T. R., & Bradley, E. H. (2003). What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. Journal of Palliative Medicine, 6(2), Hammes, B. J., & Rooney, B. L. (1998). Death and end-of-life planning in one midwestern community. Archives of Internal Medicine, 158(4), Hammes, B. J., Rooney, B. L., & Gundrum, J. D. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7), Hawkins, N. A., Ditto, P. H., Danks, J. H., & Smucker, W. D. (2005). Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. The Gerontologist, 45(1), Hickman, S. E., Hammes, B. J., Moss, A. H., & Tolle, S. W. (2005). Hope for the future: Achieving the original intent of ADs. The Hastings Center Report, Spec No, S Jennings, B. (2005). Preface: Improving end of life care: Why has it been so difficult? The Hastings Center Report, Spec No, S2-4. Kass-Bartelmes, B. L., Hughes, R., Rutherford, M. K., & Boches, J. (2003). Research in action issue #12: Advance care planning: Preferences for care at the end of life. AHRQ Pub No Rockville, Maryland: Agency for Healthcare Research and Quality. Kirchhoff, K. T., Hammes, B. J., Kehl, K. A., Briggs, L. A., & Brown, R. L. (2010). Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment. Journal of the American Geriatrics Society, 58(7), Kish, S. K., Martin, C. G., & Price, K. J. (2000). ADs in critically ill cancer patients. Critical Care Nursing Clinics of North America, 12(3), Legare, F., Ratte, S., Gravel, K., & Graham, I. D. (2008). Barriers and facilitators to implementing shared decision-making in clinical practice: Update of a systematic review of health professionals' perceptions. Patient Education and Counseling, 73(3), Lorenz, K., Lynn, J., Morton, S. C., Dy, S., Mularski, R., Shugarman, L., et al. (2004). End-of-life care and outcomes: Summary. (Evidence Report/Technology Assessment No. 110). Rockville, MD: Agency for Healthcare Research and Quality. (AHRQ Publication Number 05-E004-1) Lorenz, K. A., & Lynn, J. (2004). Oregon's lessons for improving advance care planning. Journal of the American Geriatrics Society, 52(9), Lunney, J. R., Lynn, J., Foley, D. J., Lipson, S., & Guralnik, J. M. (2003). Patterns of functional decline at the end of life. JAMA: The Journal of the American Medical Association, 289(18),

105 Lynn, J. (2005). Living long in fragile health: The new demographics shape end of life care. The Hastings Center Report, Spec No, S Lynn, J., & Goldstein, N. E. (2003). Advance care planning for fatal chronic illness: Avoiding commonplace errors and unwarranted suffering. Annals of Internal Medicine, 138(10), Lyon, M. E., Garvie, P. A., Briggs, L., He, J., McCarter, R., & D'Angelo, L. J. (2009). Development, feasibility, and acceptability of the Family/Adolescent-Centered (FACE) advance care planning intervention for adolescents with HIV. Journal of Palliative Medicine, 12(4), Lyon, M. E., Garvie, P. A., McCarter, R., Briggs, L., He, J., & D'Angelo, L. J. (2009). Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics, 123(2), e U.S. Department of Health and Human Services. (2001). Making health care safer: A critical analysis of patient safety practices. (Evidence Report/Technology Assessment No. 43). Rockville, MD: Agency for Healthcare Research and Quality. (AHRQ Publication No. 01-E058) Miller, W. R., & Rollnick, S. (2002). Motivational interviewing: Preparing people for change. New York: Guilford Press. Prendergast, T. J. (2001). Advance care planning: Pitfalls, progress, promise. Critical Care Medicine, 29(2 Suppl), N34-9. Scherer, Y., Jezewski, M. A., Graves, B., Wu, Y. W., & Bu, X. (2006). ADs and end-of-life decision making: Survey of critical care nurses' knowledge, attitude, and experience. Critical Care Nurse, 26(4), Schickedanz, A. D., Schillinger, D., Landefeld, C. S., Knight, S. J., Williams, B. A., & Sudore, R. L. (2009). A clinical framework for improving the advance care planning process: Start with patients' self-identified barriers. Journal of the American Geriatrics Society, 57(1), Schwartz, C. E., Merriman, M. P., Reed, G. W., & Hammes, B. J. (2004). Measuring patient treatment preferences in end-of-life care research: Applications for advance care planning interventions and response shift research. Journal of Palliative Medicine, 7(2), Shalowitz, D. I., Garrett-Mayer, E., & Wendler, D. (2006). The accuracy of surrogate decision makers: A systematic review. Archives of Internal Medicine, 166(5), Song, M. K., Kirchhoff, K. T., Douglas, J., Ward, S., & Hammes, B. (2005). A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery. Medical Care, 43(10), Teno, J. M. (1998). Looking beyond the "form" to complex interventions needed to improve end-of-life care. Journal of the American Geriatrics Society, 46(9), Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association between ADs and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55(2), Teno, J. M., Licks, S., Lynn, J., Wenger, N., Connors, A. F.,Jr, Phillips, R. S., et al. (1997). Do ADs provide instructions that direct care? SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Geriatrics Society, 45(4), Weiner, J. S., & Roth, J. (2006). Avoiding iatrogenic harm to patient and family while discussing goals of care near the end of life. Journal of Palliative Medicine, 9(2), Wenger, N., Shugarman, L. R. & Wilkinson, A. (2008). ADs and advance care planning: Report to Congress. Retrieved 12/3, 2009, from Wennberg, J. E., Fisher, E. S., Goodman, D. C., & Skinner, J. S. (2008). Tracking the care of patients with severe chronic illness: The Dartmouth Atlas of Health Care Lebanon, NH: Dartmouth Institute for Health Policy and Clinical Practice. Wittink, M. N., Morales, K. H., Meoni, L. A., Ford, D. E., Wang, N. Y., Klag, M. J., et al. (2008). Stability of preferences for end-oflife treatment after 3 years of follow-up: The Johns Hopkins Precursors Study. Archives of Internal Medicine, 168(19), Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA: The Journal of the American Medical Association, 300(14), Yedidia, M. J. (2007). Transforming doctor-patient relationships to promote patient-centered care: Lessons from palliative care. Journal of Pain and Symptom Management, 33(1),

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107 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Chapter 3 Appendices 101

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109 APPENDIX 1: FIRST STEPS FACILITATOR CERTIFICATION This program is designed to prepare participants for the role of First Steps ACP Facilitator. It emphasizes the knowledge, skills, and attitudes to be effective in assisting patients and their families through the ACP process of understanding, reflection, and discussion. This process ideally results in the creation of a basic plan, such as an AD. To acquire this skill set, we believe a robust curriculum is required that goes well beyond the technical skills of completing an AD document. Respecting Choices includes learning interview skills to engage others in ACP discussions; assisting patients to understand their healthcare choices; and motivating patients to express their goals, values, and beliefs. Respecting Choices has developed a standardized blended learning curriculum for those who want to become ACP Facilitators. This certification course consists of the completion of an online ACP facilitator course (i.e., a pre-course requirement) and attendance at an 8-hour classroom program or its equivalent. Certification as an ACP facilitator is awarded to participants who complete all of the required activities. The online component of this blended learning curriculum consists of the following six modules: Module 1 - ACP and ADs: Understanding the Language, Concepts, and Tools Module 2 - Facilitating Basic ACP Discussions Module 3 - Creating an AD: Communicating the Plan Module 4 - Facilitating ACP Discussions for adults with chronic, progressive illness Module 5 - Facilitating ACP Discussions for adults who are expected to die in the next 12 months, or for those living in long-term care facilities Module 6 - Making ACP Work: Organizational Issues and Educational Strategies In addition to the online facilitator course, participants are to complete other pre-course activities: 1) submit a practice AD document used in their organization or community, and 2) attempt to have an initial ACP conversation with a loved one. These activities provide an opportunity for participants to engage in the experience of ACP, to more fully understand the work they will be doing with others, to learn engagement strategies, and to appreciate the challenges in motivating others to participate in ACP. These pre-course activities create a comprehensive learning opportunity and prepare participants for a robust classroom experience that allows them to concentrate on the application of information and identification of key facilitation techniques, and to practice ACP discussions while developing beginning competencies. 103

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111 APPENDIX 2: DISEASE-SPECIFIC FACILITATOR CERTIFICATION a communication skills training program to improve end-of-life decision making PROGRAM BACKGROUND Millions live with and eventually die from such chronic illnesses as heart, lung, renal, and liver failure; cancer; coronary artery and peripheral vascular disease; diabetes; and dementia. Many of the patients experience sudden, often predictable complications from their illnesses, or they face serious disabilities from a slow and gradual decline in function (Lynn & Goldstein, 2003; Lynn, 2005). However, since many of these patients do not fit the classification of dying and have incomplete information regarding the progression of their illness, they or their substitute decision makers face complex medical decisions they are unprepared to make, including end-of-life decisions, in the midst of a medical crisis. They are often robbed of the opportunity to participate in their own healthcare choices. The 2008 Dartmouth Atlas report highlights the wide variability in care (and costs) of patients with chronic progressive illness in the last two years of life, citing the following reasons for this variability: (1) lack of evidence-based practices to guide care, (2) poor coordination of care and overuse of acute care hospitals, and (3) flawed payment systems that reward overuse. The report identifies concern about the possibility that some chronically ill and dying might be receiving too much care: more than they and their families actually want or benefit from (Wennberg, Fisher, Goodman, & Skinner, 2008). Based on the experiences over time of the Respecting Choices faculty and the reality of the abovementioned status of patients with chronic illness, Respecting Choices developed a research-based intervention. The Disease-Specific ACP (DS-ACP) Interview provides patients with chronic, life-limiting illnesses and their chosen healthcare agents the opportunity to become active partners in the medical decisions they are likely to face in the near future. The key features of this interview include: a structured, in-depth (60-90 minutes), and appropriately timed interview with a patient and chosen healthcare decision maker; an exploration of the dyad s understanding, experiences, and goals for living well; use of active communication techniques to encourage discussion and improve shared decision making; use of a decision-aid (Statement of Treatment Preferences) to assist in clarifying goals for disease-specific, life-sustaining treatment; and development of an individualized plan to address the patient s need for information, additional resources, and further discussion with others, as well as documentation and communication of patient s decisions that can be honored by healthcare providers at any appropriate healthcare facility. In 2000, pilot studies on the DS-ACP Interview were completed at Gundersen Health System in La Crosse, Wisconsin. The interview was well received by patients and surrogates, and results indicated that patientsurrogate congruence regarding treatment preferences was significantly higher in the intervention group (n = 13) than in the control group (n = 14) (Briggs et al., 2004). The intervention was replicated in a small 105

112 pilot study (n = 13) of cardiac surgical patients (Song et al., 2005). As in the initial pilot, patient-surrogate congruence was higher in the intervention group than in the control group, and the groups experienced similar levels of anxiety. Additionally, at Children s Hospital in Washington, DC, a randomized controlled trial in a hospital-based outpatient specialty HIV clinic tested the interview with medically stable adolescents (N = 30) with HIV/AIDS and family members or surrogates. The majority of the adolescents (97 percent) were black. Adolescent-surrogate congruence was significantly higher in the intervention group than in the control group, and intervention participants reported feeling significantly better informed about end-of-life decisions (p < ) and better supported than their control group counterparts (p < ) (Lyon, Garvie, Briggs et al., 2009). The intervention was further tested in a multi-site, randomized, clinical trial: Patient-centered ACP with patients with end-stage heart failure and end-stage renal disease (HSC Protocol # ) funded by the Agency for Healthcare Research and Quality. Adult patient-surrogate pairs (N = 312) completed baseline questionnaires and were randomized to a control group, which received standard AD care, or to an intervention group, which participated in the DS-ACP Interview. Following the intervention, patient-surrogate congruence concerning the patient s care preferences was greater in the intervention group than in the control group (p 0.01) on each of four situations presented. The likelihood ratio for each situation ranged from 2.04 to Patients and surrogates in the intervention group demonstrated greater knowledge of ACP than the control group, and they rated the quality of the communication very positively (Kirchhoff et al., 2010). The DS-ACP Interview has been well received, resulting in increased agreement between patients and surrogates regarding treatment preferences and in the documentation of specific end-of-life treatment plans. It could be expected that the opportunity to make timely and informed end-of-life treatment decisions would positively affect the utilization of resources in the last months to years of life, thus avoiding unwanted care and reducing costs of hospitalization and technology. In a recent multi-site study of advanced cancer patients (N = 332), end-of-life discussions resulted in less aggressive use of technology (ventilation, resuscitation) and earlier hospice referrals (Wright et al., 2008). 106

113 APPENDIX 3: POLST FACILITATOR CERTIFICATION PROGRAM BACKGROUND The Physician Orders for Life-sustaining Treatment (POLST) program, originating in the State of Oregon ( is gaining widespread national popularity as best practice for ensuring that end-oflife treatment preferences be honored. The POLST program provides a method for transferring a person s treatment preferences into medical orders that are recognized throughout the healthcare continuum (home care, long-term care, during transport). States and communities that have replicated the POLST program have different names, such as Medical Orders for Life-Sustaining Treatment (MOLST) or Physician Orders for Scope of Treatment (POST), but have developed programs consistent with the POLST paradigm. The successful implementation of a POLST program must be complemented by professionals who can develop the necessary communication skills to initiate ACP discussions; help individuals establish medical and non-medical goals of care; provide information on end-of-life treatment options, benefits, and burdens; and build decision-making consensus among family members and the healthcare team. These skills often do not come naturally for professionals who desire to provide assistance to individuals making difficult end-of-life decisions. PROGRAM DESCRIPTION The POLST Facilitator Certification course is designed for professionals (social workers, nurses, physicians, clergy) working with elderly who are frail or who will likely die within the next 12 months. This course builds on over ten years of success with the First Steps Facilitator Certification course offered by Respecting Choices. The program helps participants learn how to initiate POLST conversations, assist in making informed healthcare decisions, create written documents, prepare participants to become certified as POLST instructors, and improve the effectiveness of the certification course. 107

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115 APPENDIX 4: ACP FACILITATOR RESPONSIBILITIES Initiate opportunities for ACP discussions at multiple encounters and throughout the lifespan of an individual. Assess the needs of the individual seeking ACP assistance. Design an individualized ACP approach based on the patient s illness, the patient s readiness to participate, the patient s fears, concerns, religious, or cultural beliefs. Make referrals to other resources as identified during the assessment. Assist patients in making informed healthcare decisions based on understanding, refection, and discussion. Prepare and strengthen the role of the patient s chosen healthcare agent. Assist in the development of a plan that honors the patient s goals, values, and beliefs for future medical care. Develop strategies to effectively communicate the plan to those who will be responsible for interpreting it and making decisions consistent with the patient s goals, values, and preferences (e.g., family, physician, and other healthcare providers). 109

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117 Purpose APPENDIX 5: SAMPLE ACP PRESENTATION FOR PHYSICIANS (approximately minutes) To provide a description of the ACP program, the ACP materials used in your organization, and the role of the physician. Pre-program optional activities Completion of an online course on Basic ACP Concepts Review of the organization s policy and procedure on ACP and AD Review of the role description for physicians Agenda Start with an engagement strategy to demonstrate the purpose of planning o Show the Carol Goodman story from the Making Choices video. o Tell a story of a patient who is scheduled to see the physician and could benefit from ACP. o Demonstrate the inadequacies of an AD document completed without discussion. o Ask for one story from the audience of how planning was successful. Provide an overview of the ACP program in your organization o o o o Outline the purpose of the ACP program and organizational goals, e.g. Initiate ACP in the clinic with all patients over the age of 55 by providing information and making referrals to ACP facilitators. Describe roles and responsibilities of the ACP team. Describe materials (e.g., ACP booklets, information cards, videos, posters). Review the process for making ACP referrals. Review the physician s role and responsibilities o o o Provide a written list of physician responsibilities. Demonstrate how to initiate a five-minute ACP discussion with a patient: use a written script and use the ACP trigger tape from the AMA s EPEC curriculum. Demonstrate the system for documenting ACP discussions and reviewing existing documents and plan. 111

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119 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G CHAPTER 4 BUILDING YOUR ACP PROGRAM KEY ELEMENT #3: COMMUNITY EDUCATION AND ENGAGEMENT 113

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121 CHAPTER 4 BUILDING YOUR ACP PROGRAM KEY ELEMENT #3: COMMUNITY EDUCATION AND ENGAGEMENT INTRODUCTION Community education has been the focus of ACP initiatives since the origin of the Patient Self Determination Act (PSDA) of One assumption underlying this education is that if we simply inform people of their rights to make their own healthcare decisions and create a legal document, they will be eager to complete one. Unfortunately, after nearly 20 years of providing education, pamphlets, books, and documents, this assumption is not well supported. Respecting Choices has worked with multiple organization and community teams who have invested significant resources in designing and distributing written materials and presenting community forums. These approaches to community education have critical flaws and little research to demonstrate their effectiveness. Conversely, Respecting Choices has developed a multi-faceted approach to community and patient education as a component of an overall ACP system. This approach has resulted in a high level of participation in ACP and evidence that plans created are effective in guiding end-of-life decision making. We will begin this chapter by reviewing some of the lessons learned from research on the effectiveness of ACP educational modalities. We will describe the conceptual framework that has guided the strategies and tools designed by Respecting Choices to disseminate the concept of ACP and motivate people to participate. We will describe the educational materials we have developed and provide examples of how to integrate them into a community educational campaign plan. This chapter concludes with strategies to address the ACP needs of diverse populations (e.g., cultures, religions, disabilities). SINGLE-MODALITY ACP EDUCATIONAL STRATEGIES ARE INEFFECTIVE Education on the importance of ADs in exercising one s right to self-determination has been a component of most healthcare organization and community ACP initiatives since the early 90s. Unfortunately, research has shown that single-modality educational efforts focused solely on providing information about rights and medical treatments are largely unsuccessful in motivating people to participate in ACP (Lorenz et al., 2004). Moreover, research on the effectiveness of ACP education has been complicated by the use of differing interventions and measurements, and by small sample size. For example, studies have tested the following types of educational interventions: written information on how to complete an advance directive, information guides that provide definition of terms, such as living will and surrogate, informational videotapes, 115

122 education to providers on the importance of advance directives, educational seminars for consumers, and counseling sessions to assist with statutory advance directive completion. Two large systematic reviews of the impact of education alone to promote ADs summarize studies that help explain the ineffectiveness of single-modality approaches in changing patterns of behavior or long-term outcomes (Guo & Harstall, 2004; Lorenz et al., 2004). For example, one randomized controlled study focused on the combined impact of written information and presentations versus information alone on the number of completed ADs. Patients in the intervention group (N = 95) attended an educational session combined with written information, while patients in the control group received written information only. The completion of ADs in the intervention group was twice that of the control group (Landry, Kroenke, Lucas, & Reeder, 1997). Unfortunately, the majority of studies investigating the impact of ACP educational modalities have developed narrowly focused measurements, such as the completion of documents, patient satisfaction, knowledge, immediate psychological adjustment, and other short-term outcomes. Efforts to increase AD communication, completion, and documentation while often satisfying to patients, families, and providers have not demonstrated an impact on improved decision making at the bedside, which ultimately is the goal of community educational campaigns (Lorenz et al., 2004; Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007). Single-modality educational efforts are unsuccessful for two reasons. First, it is difficult if not impossible to sustain these educational efforts long enough to see significant changes in behavior (e.g., increased participation in ACP); and second, these efforts are not geared toward audiences that are more resistant to change and require different strategies to motivate participation (Wenger, Shugarman, & Wilkinson, 2008). The objectives in offering ACP education to whole communities become more complex when the characteristics of all groups are incorporated. Individuals from groups such as non-dominant races, cultures, and religions, as well as the homeless and those with disabilities may become disenfranchised. They are less likely to participate in ACP or the completion of documents due to distrust of the medical system, differing values in relation to decision-making authority, and lack of individualized approaches for those with disabilities (Asch, 2005; Hwang, 2005; Kwak & Haley, 2005; Searight & Gafford, 2005). Strategies to educate and engage these diverse populations remain a challenge in addressing whole community ACP education and engagement initiatives (Wenger et al., 2008). The Respecting Choices model uses a multi-faceted approach to community education based on a conceptual framework that has guided the design of materials and engagement campaigns. 116

123 A CONCEPTUAL FRAMEWORK FOR DESIGNING COMMUNITY ACP EDUCATION AND ENGAGEMENT CAMPAIGNS In 1991, when the La Crosse AD (LAD) task force began to develop its ACP system, members realized they would need to comply with the PSDA requirements to inform patients of their rights to complete ADs. The LAD task force made a commitment to design educational strategies that would exceed the letter of the law. With the ultimate goal of respecting patients informed healthcare choices, leaders of this initiative wanted to create strategies that were individualized, engaging, and would promote dialogue between patients, designated healthcare agents, family, and healthcare providers. Over the last 20 years, Respecting Choices has developed and refined materials and strategies by integrating the concepts listed below. CONCEPT #1: ACP IS AN ONGOING AND STAGED PROCESS One of the greatest misconceptions about ACP is that it is a static, one-time event. Respecting Choices has defined ACP as an organized process of communication to help individuals understand, reflect upon, and discuss goals for making future healthcare decisions in the context of their values and beliefs. The Respecting Choices stages of planning (described in Chapter 3) supports ACP as an ongoing process that begins with an assessment of the person s health status that guides the individualized educational approach. This staged approach to planning makes it possible and necessary to design individualized approaches to community education and engagement. One-time educational events are often ineffective because they tend to focus on the completion of an AD document and typically do not include follow-up activities to support the ongoing process of ACP. To motivate people to participate in ACP, education needs to do more than provide information about patient rights (e.g., the right to make healthcare decisions) or explanations about the types of AD documents (e.g., living wills and powers of attorney for healthcare). It must be designed with consideration of a host of variables that influence motivation to participate. For example, to interest people in First Steps ACP, education and engagement are focused on the subpopulation of healthy individuals or those who have never been exposed to planning for future healthcare. The educational approach for this community sub-group must do more than provide information on advance directives or how to complete the paperwork. To be successful, it is important to include strategies that help caregivers understand the rationale for planning as a healthy adult (e.g., sudden illness or injury from a car accident in which there is little chance for a cognitive recovery), building skills in talking to loved ones and healthcare providers, and offering assistance in choosing a qualified healthcare agent. 117

124 This education can be offered in a variety of community or outpatient settings (e.g., religious organizations, senior centers, annual healthcare appointments, and Internet social networking sites) as a component of routine and preventive healthcare. This approach to basic planning normalizes the conversation and prepares people to revisit their goals if and when they have a more serious illness or as they age. CONCEPT #2: EDUCATION IS DIFFERENT FROM ENGAGEMENT Efforts to educate people about ACP are clearly directed toward the health of the community at large. Health education is defined as programs delivered to improve and maintain the healthcare of the community ( Ideally, education delivers important messages that will inspire or even persuade participants to change their behavior, (Rothschild, 1999). ACP education has succeeded in increasing awareness of ADs. According to a 2005 Pew Research Center survey, public awareness about living wills is universal: 84 percent of respondents supported individuals rights to decide what type of medical treatment they would want at end-of-life ( This level of awareness, however, has not translated into universal action. Education alone is usually insufficient to motivate people to participate in ACP. Adults need assistance understanding why participating in ACP will be of benefit to them and their families. Engagement strategies complement educational efforts. While the definition of engagement is complex, it includes the processes used to connect with the audience for a meaningful experience. Engagement strategies aim to encourage dialogue with the consumer and active participation to improve the outcome of the educational program. Several concepts help us achieve the goal of engagement. In Chapter 1, we described four interrelated theoretical concepts that have framed the Respecting Choices model for ACP and are embedded in our approach to community education and engagement. As a review, these theoretical concepts are The Doctrine of Informed Consent barriers to understanding, reflection, and discussion must be identified and removed before informed decision making can take place; The Adult Learning Principle of Engagement as described above; Narrative Approach listening to patients stories increases understanding of their goals, values, and beliefs; and The Ethics of Caring Relationships relationships among loving people need to be acknowledged as a critical concept in designing individual approaches to ACP. ACP materials and community engagement campaigns are therefore designed to promote planning as a process, to help identify barriers to the planning process, to actively engage individuals, to use narrative and storytelling as primary tools, and to integrate an ethics of caring relationships in the ACP 118

125 approach. Social marketing and motivational interviewing techniques provide additional guidance in developing specific engagement strategies. CONCEPT #3: SOCIAL MARKETING STRATEGIES ASSIST WITH ACP MOTIVATION AND PARTICIPATION Social marketing strategies have proven successful in causing behavioral change for a variety of healthcare issues, such as smoking cessation. Social marketing is defined as a planned program to help people voluntarily change behavior by offering benefits desired by participants, eliminating barriers to participation, and motivating participants to take the next step for behavioral change (Rothschild, 1999). One of the social marketing models in the field of advertising includes a three-pronged approach of (1) motivation, (2) opportunity, and (3) ability (MacInnis, Moorman, & Jaworski, 1991). A more specific description of this social marketing model follows with examples of how Respecting Choices integrates these strategies into the design of ACP community education and engagement. Motivation. People are more inclined to change behavior when they perceive their self-interest will be served. Respecting Choices has used motivational strategies to encourage participation in ACP, from the creation of videos that demonstrate the consequences of lack of planning through actual patient stories, to patient education fact sheets that provide information on the benefits and burdens of cardiopulmonary resuscitation (CPR). Another motivational technique involves gearing the educational approach to the group s stage of illness. A group of healthy adults or those who have never been exposed to planning can be motivated when they understand the value of ACP for all adults who need to plan for an unexpected accident or illness. They also need to understand the benefits of choosing a surrogate decision maker. However, patients with a more serious illness (e.g., heart failure, chronic kidney failure) can be motivated by group discussions about the potential complications that may be caused by the illness, explanations of benefits and burdens of specific life-sustaining treatment, and the opportunity to make timely informed decisions before a crisis. Opportunity. There must be mechanisms in place to assist those who are motivated to participate. Barriers to ACP are the lack of insurance reimbursement for this service and the lack of professionals time, skill, and motivation to do it well. These issues can be addressed by training non-physicians as ACP facilitators and offering a variety of opportunities for assistance. Respecting Choices provides qualified assistance for ACP at multiple levels: within the community, in the outpatient setting, posthospitalization, and within chronic care management. More recently, we have developed an online ACP tutorial for our patients who are attracted to this type of educational modality ( During community presentations on ACP, participants receive contact numbers for individualized assistance from a qualified ACP facilitator at one of the local healthcare facilities. This multi-pronged approach to providing opportunity to participate in ACP increases the odds of identifying a person who is ready to participate. Ability. Patients have identified a lack of skill in initiating ACP conversations with their physicians or family members. They require assistance with this skill deficit that education alone cannot address. Respecting Choices employs the following strategies to address this skill deficit: (1) use of written materials that help patients open the 119

126 ACP discussion with loved ones, (2) assistance in facilitating family discussions, and (3) creation of guidelines for how to choose a qualified healthcare agent. The message is not about completing an AD document; rather, it is about how to participate in the process of understanding, reflection, and discussion by providing specific skills to accomplish this task. Social marketing strategies also recommend the creation of a brand that is used to easily communicate the product being advertised. Branding includes the selection of a name and logo for your ACP initiative that will be recognized by the whole community in a consistent and reliable manner. The Respecting Choices community education and engagement campaign is called Making Choices, which features an attractive starfish image. Today, through years of social marketing, the Making Choices brand is well recognized throughout the La Crosse community and has been licensed by many other communities and organizations nationwide. CONCEPT #4: MOTIVATIONAL INTERVIEWING TECHNIQUES INCREASE PARTICIPATION IN ACP The field of psychology has provided a rich environment to understand the concepts of motivational interviewing and to apply these techniques to ACP education and engagement (Miller & Rollnick, 2002). Prochaska s stages of change model describes an individual s readiness to change and helps identify appropriate engagement approaches (Prochaska & Velicer, 1997). The stages of change are as follows: Precontemplation: no intention to take action in the next six months, Contemplation: intends to take action in the next six months, Preparation: taken a few steps and intends to take action in next 30 days, Action: taken action and made a change, Maintenance: the change has continued over time, and Termination: individual can maintain the change independently. When aware of these stages of change, different techniques can be used to move a person from one stage to the next (e.g., from precontemplation to contemplation). Eight motivational interviewing techniques are described that assist with the transition through the stages of change (Miller & Rollnick, 2002). Respecting Choices includes some of these techniques in its First Steps Facilitator Certification course (Westley & Briggs, 2004). These techniques, with examples of application to community education and engagement, are described below: Giving advice. Individuals can be motivated to change when they receive clear advice about how to proceed. Confusion leads to a lack of action. The public remains confused about many aspects of the ACP process: (1) terminology (e.g., living will versus power of attorney for healthcare); (2) the purpose of participating in ACP (e.g., make choices about future healthcare preferences before illness or advanced age); and (3) documentation of individual decisions. Community ACP education should provide clear directions about how a person can get started, about the preferred 120

127 document to complete for most adults, about the risks of not participating, and about how to choose a qualified healthcare agent. Removing barriers. Unless fears and barriers are identified and addressed, change is unlikely. Many individuals may be interested in participating in ACP but have fears and worries that keep them from doing so. Respecting Choices helps people explore these barriers through written materials, community presentations, and facilitated discussions. Providing choices. Resistance to change is reduced when individuals understand that they are not being forced to accept only one course of action. The Respecting Choices approach to ACP education communicates a clear respect for a wide range of choices that individuals may consider for their future healthcare, how these choices may likely change over time as illness progresses, and how the process of planning needs to be individualized for different cultures, religious beliefs, and other preferences. Decreasing desirability. Reasons for not wanting change vary. What is causing the person to stay in his or her current state? What might help the person see the risks of not changing? Reasons for not participating in ACP are explored through community presentations, written materials, and individual facilitation. Practicing empathy. Empathy encompasses the skill of reflective listening that promotes trust and long-lasting change. Providing feedback. In order for people to change, they need some knowledge about their current situation and how it may help or hurt them. For example, we have found it helpful to inform individuals about the consequences of not making choices about future medical care. People are often surprised at the default decisions that will be made when ACP is not completed. Clarifying goals. This technique of self-evaluation assists individuals to articulate what is important to them. Respecting Choices helps individuals examine personal goals and values through case scenarios (e.g., what would you do ), video examples, and planning guides for family discussion. Active helping. This interview technique involves the initiation and willingness to help with a caring attitude. Community ACP education and engagement strategies must include follow-up suggestions for how an individual and family can receive more assistance in continuing the ACP process. CONCEPT #5: DEFINING COMMUNITY ASSISTS IN DESIGNING THE EDUCATIONAL APPROACH ACP education must be individualized to the needs of the person or to the group you are attempting to influence through educational strategies. Community is an important concept to define because it will affect the type of educational program and related strategies that are implemented. Community represents groups who share a formal association with each other, such as geography (town, city, state), sub-group within a geographic area (senior center, healthy adults), specific common affiliation (culture, religion), 121

128 department within an organization (ICU, patient education), and disease management (heart failure clinic, oncology). When interacting with a geographic community, for example, it is important to understand the community s demographics, social values, culture, religion, and history (Byock, Norris, Curtis, & Patrick, 2001). Social marketing strategies describe the concept of targeting in order to design educational strategies that can be individualized to the participants readiness to learn, barriers, values, and other variables (Mah, Deshpande, & Rothschild, 2006). Targeting allows for the customization of strategies for different target audiences. For example, an ACP program within a Catholic community would ideally include a representative from the religious group (e.g., priest, parish nurse) who participates in or initiates the ACP program and can accurately represent any relevant church teachings that may influence ACP decisions. CONCEPT #6: THE GOALS OF THE EDUCATIONAL STRATEGY TO ASSIST IN DETERMINING THE APPROACH When designing ACP education and engagement strategies, it is important to clarify the intended goals and how achievement of these goals will be measured. Many ACP educational programs are designed solely to document education (e.g., number of sessions taught), attendance, dissemination of materials, completion of ADs, or satisfaction with the program (e.g., evaluation of speaker effectiveness). These short-term outcomes do not measure the effectiveness of the intervention (i.e., helping individuals understand choices, reflect on goals and values, and communicate with others). To measure these goals, it is important to develop more effective measurement techniques. For example, an appropriate goal for an ACP educational presentation would be motivating individuals to take the next step beginning to talk to loved ones. This goal could be measured through a pre- and/or postevaluation that assesses motivation rather than attendance (Appendix 1, page 139. Subsequently, facilitators should follow up with participants in one to two weeks, providing assistance as needed. When designing educational materials, one must consider varied usages, needs and goals. Rather than producing an information-laden 20-page manual, it is helpful to have customized materials conveying distinctive messages for specific purposes. This design strategy allows ACP facilitators healthcare providers, community leaders, and others to assess the needs and motivation of the individuals they are assisting and then decide which educational material will best meet their needs. RESPECTING CHOICES COMMUNITY EDUCATION AND ENGAGEMENT MATERIALS At Respecting Choices, the community education and engagement campaign is called Making Choices, signified by a starfish logo. Making Choices materials are used throughout the La Crosse community to deliver consistent, common, and repetitive messages. Your organization may choose to license or purchase educational materials from Respecting Choices, design your own, or use a combination of both. Once materials are adopted and endorsed by your 122

129 community, ACP facilitators and others who are responsible for education and engagement can effectively choose the tools that best meet the needs of the targeted individuals or groups. A description of our education and engagement materials follows. Application of these materials will be further described in the Developing Community Education and Engagement Campaigns section. MAKING CHOICES: INFORMATION CARD The information card assists healthcare providers in offering reliable and consistent information about an individual s right to participate in ACP. It briefly describes the different types of Ads and addresses the use of an AD in an emergency situation. It clearly conveys that having an AD is optional while directing individuals to appropriate sources for more information. The information card can be used to meet the Patient Self-Determination Act (PSDA) and The Joint Commission requirement that adult patients be provided with ACP information upon inpatient admission or enrollment. The card can also be used in the outpatient setting when an individual requires basic information about ACP. MAKING CHOICES: ADVANCE CARE PLANING INFORMATIONAL BOOKLET The booklet provides more specific information on ACP. It emphasizes individuals rights to make healthcare choices, defines ACP, describes types of ADs in greater detail, and answers commonly asked questions. The booklet includes several stories about ACP s usefulness and contains a glossary of terms with a resource list for more information. This piece is intended to stimulate reflection and encourage people to talk with their families and their healthcare providers about treatment preferences. It is not focused on how to complete a specific AD document. The booklet can be used in conjunction with group ACP presentations for those who prefer to take information home and learn more. MAKING CHOICES: ACP GUIDE The ACP guide helps individuals reflect upon and discuss their personal goals, values, and beliefs through a series of questions. Individuals are encouraged to look back at life experiences and then thik about their current feelings. They are also encouraged to communicate their feelings relating to future healthcare. The ACP guide begins to define basic treatment choices and encourages individuals to seek more information about them. This process facilitates the identification of some preliminary values and preferences about end-of-life decisions. The planning guide can be used in conjunction with group ACP presentations to assist participants in opening the discussion with their family and loved one. 123

130 MAKING CHOICES: VIDEO The video emphasizes how individuals goals, values, and beliefs influence how they make healthcare decisions. It encourages people to accept the responsibility to reflect upon and discuss medical treatments they may or may not want. The video demonstrates the need for ACP through real-life examples of patients and families involved in making healthcare choices, and their feelings regarding these situations. It is an effective tool that provides an in-depth look at the process in which people must participate to complete an AD document, focusing on the importance of conversations rather than on completing the document. The video can be used in individual ACP facilitation or as a part of a group educational presentation when a resource person would be available to answer specific questions. Before showing the video, it is important to warn viewers of its frank and emotional impact. Many viewers may have already had experiences with end-of-life decision making or may be facing serious illness themselves. The professional using the video must be prepared to deal with the emotional reactions that may occur. For viewers who have faced or will be facing serious illness, it may be best to show the video in a private setting with carefully chosen family members or other loved ones. It is important to determine if showing the video is necessary. Many people are already motivated to consider end-of-life issues and do not need to view the video, or they may learn more readily by faceto-face discussion. MAKING CHOICES: INFORMATION CARD FOR HEALTHCARE AGENTS The information card helps healthcare agents understand what it means to be an agent and what types of decisions they may be asked to make. The information can be enclosed in an attractive greeting card that can be sent to individuals as an invitation to accept appointment as the chosen healthcare agent. It suggests actions agents can take to prepare for their important role and is intended to engage them in dialogue. The information card also emphasizes to healthcare agents the importance of understanding the preferences of the individuals who selected them. Participants in community education can use the card to help them choose a healthcare agent(s) and then share it with the person(s) they want to appoint as healthcare agent(s). MAKING CHOICES: WALLET CARD A wallet card serves as a communication tool to alert others that an individual has exercised his or her right to have a written AD. The wallet card documents when the AD was initiated, what type it is, and with which healthcare institution it is filed. It does not indicate specific information about the individual s preferences. The wallet card reminds individuals that they have initiated an AD and that they may need or want to update it. (The card is helpful in alleviating concerns regarding how to alert healthcare professionals to the execution of an AD.) 124

131 FACT SHEETS TO ASSIST WITH SPECIFIC LIFE-SUSTAINING TREATMENT CHOICES Patients who are at risk for complications from chronic, progressive illness, and frail elderly people often living in long-term care facilities, are in need of making timely and informed decisions about a variety of life-sustaining treatments. Materials that provide helpful information about life-sustaining treatment in an honest and sensitive manner are essential for these vulnerable at-risk populations. Respecting Choices has developed Fact Sheets on CPR, artificial nutrition and hydration, and airway management. These Fact Sheets provide easy-to-understand information on the benefits and burdens of each treatment and encourage individuals to reflect on what outcomes they would expect. Patients and families have found the Fact Sheets, which are written at an elementary reading level, very useful in making these difficult end-of-life treatment decisions. DEVELOPMENT OF A COMMUNITY EDUCATION AND ENGAGEMENT CAMPAIGN Once a variety of ACP education and engagement materials are developed and endorsed, a plan for dissemination to the community can be designed. Key elements in this design include partnerships with key community stakeholders, visibility in a variety of settings, and targeted ACP education and engagement campaigns. PARTNERSHIPS WITH KEY COMMUNITY STAKEHOLDERS ACP is a relatively new effort that will often have a significant impact on individuals and their families. Adults are more likely to participate in ACP if they trust the person or group who urges them to begin and assists them in the process. While physicians and other healthcare providers may be of assistance, other trusted advisors can be instrumental in providing guidance, support, and perspectives. A community ACP education and engagement campaign that shares a similar approach and common language and is supported by professionals and community groups can facilitate trust and dissemination of ACP to a large number of consumers. Obvious partnerships for community engagement include religious/spiritual leaders, local attorneys, and community groups such as health departments, senior support and advocacy groups, and residential facilities. One important way to build partnerships is to include representatives from these groups on your ACP implementation team or advisory committee. These representatives bring new perspectives to your group, are a liaison with the larger community, and provide education. 1. Partnerships with religious/spiritual organizations Communities that offer ACP initiatives to a mixture of religious or spiritual organizations will need to develop strategies to build these important partnerships. As these partnerships are secured, individuals in the community will be better served as they look to religious advisors for information and guidance. 125

132 The La Crosse Area AD Task Force was fortunate to have a Lutheran minister participate as a team member. She was a well-respected, established pastor and wanted to make ACP and related end-of-life issues a central theme of her doctoral education. She viewed ACP as a natural part of ministry, consistent with how faith and values guide one s life when illness may require significant ongoing medical support. She was a community champion, keeping area clergy and religious leaders abreast of the work of the community AD task force and educating them about ACP and its relationship to end-of-life decisions. Realizing that many people might first turn to a religious leader to discuss end-of-life issues, we decided to invite ministers and other religious leaders to attend the First Steps Facilitator Certification course. To implement this plan, we secured support from the local Roman Catholic and Lutheran bishops, who sent a joint letter to area Catholic priests and Lutheran ministers asking them to support the mission of the project and to consider attending the First Steps Facilitator Certification course. Two religious foundations provided funds to subsidize the training of clergy and religious leaders from area churches, mosques, or synagogues. This offer was extended to representatives of organizations who wanted to incorporate ACP into their ministry. Parish nurses were an important component of this group. The funds from the foundations were also used to reduce the cost of the course for these religious representatives and to provide materials (information booklets, planning guides, power of attorney for healthcare documents, wallet cards, videos) to ensure consistent educational tools and approaches to ACP throughout the community were used. Once educated, these representatives were willing to work in partnership with other trained ACP facilitators on community education. This combination of skill and credibility was effective in attracting large groups of people and motivating them to consider ACP. The representatives from the faith communities also felt prepared to more effectively address end-of-life needs and concerns of their members. 2. Partnerships with attorneys While it is not legally required to use the services of an attorney to complete an AD, some individuals may find this valuable or a natural component of their estate planning. Up to 15 percent of AD documents in La Crosse County are completed with the assistance of attorneys. Developing partnerships with local attorneys and bar associations assists with (1) the creation of useful and consistent ADs, (2) the communication of the plan with the client s healthcare provider, (3) the appropriate referral of clients with health-related questions and concerns to an ACP facilitator, and (4) the creation of a system for entering documents generated outside of the healthcare organization. Many bar associations across the nation have recognized that the needs of their clients may go beyond their expertise and are interested in partnerships with local healthcare resources. There are a variety of resources offered by the American Bar 126

133 Association, including a Consumer s Toolkit for Healthcare Advance Planning ( In La Crosse, our strategy was to focus on partnering with local attorneys: Educational events. In collaboration with our local bar association, we organized several education programs for area attorneys to explain the ACP program, share materials, and answer questions. Over time, we found that documents from attorneys had a number of problems. Some of these had to do with misunderstanding of the law; others had to do with lack of discussion with clients. A second education program was planned. A healthcare legal expert from was invited to speak and review actual cases. The title of that program was Protecting the Autonomy of Your Client. This program was well received, and continuing education credits were offered. On a statewide level, Respecting Choices faculty consulted with the State Bar of Wisconsin to launch an educational campaign, Life Planning 2000, to improve ACP knowledge and skills of attorneys, physicians, and other healthcare providers. Document review and follow-up. We have established a standard for reviewing all AD documents sent from outside of the facility. This helps prevent documents that are not legally valid, confusing, or that ask us to follow plans that seem inconsistent from being entered into the medical record. Over many years, we have found that up to 10 percent of documents completed by people who are not trained as facilitators have problems. We have attempted to provide feedback to attorneys about such problems. When documents are found that create problems or were not completed correctly, the attorney who was involved in creating the document is contacted to discuss the issue and decide how to resolve it. At times, the problems are straightforward (e.g., a date or a witness signature is missing). At other times, the intent of the instructions is ambiguous, and efforts to clarify instructions are required. Occasionally, legal errors are made. For example, one document appointed the client s attorney as the healthcare agent, the attorney also served as a witness to the signing of the document. Efforts to provide such feedback have led to fewer problems over time, increased knowledge about the types of issues clinicians face at the beside, and a positive, professional relationship with attorneys in the community. Surveys to raise awareness. We have periodically surveyed local attorneys to assess the issues they encounter in completing ADs with clients (Appendix 2, page 141). Doing so helped engage them in the challenges of assisting clients in making informed decisions, made them aware of ACP materials, and led them to make referrals of clients who needed additional assistance. We have developed a suggested role for an attorney when assisting clients in the process of ACP (Appendix 3, page Additional partnerships Other important partnerships include independent healthcare organizations, such as longterm care facilities, home health agencies, hospices, emergency response systems, and the county health department. (We had representatives from some of these organizations on our local task force. These members acted as liaisons with representatives from other, similar organizations.) The practices developed by the task force are generally followed throughout the community. 127

134 Having community standards in place makes it much easier for patients, physicians, and other healthcare providers as they move from one setting to another. This standardization also reinforces and promotes certain desired behaviors. People become familiar with the program and materials and come to expect a standard of service. Over the years, we have trained hundreds of individuals from our community of about 120,000 people as ACP facilitators. There are many advantages to having such a large group of facilitators. The burden of ACP does not fall solely on one professional or one organization. The program can have a more widespread impact. Individuals seeking assistance receive consistent quality service. More effective referrals are made to professionals as needed. Individual facilitators can better manage the responsibility. VISIBILITY WITHIN AN ORGANIZATION OR COMMUNITY The Making Choices poster, as discussed at the beginning of this chapter, is a simple way to remind both patients and providers about the importance of end-of-life treatment planning and ADs. In the outpatient setting, this poster can be used in examination rooms and in public places in a health facility (e.g., the admissions office). It provides a simple way to constantly remind everyone that ACP discussions are important. MEDIA We have attempted to keep end-of-life treatment planning and discussion in front of the public by encouraging stories in the local print and broadcast media. The local hospitals produce Sunday supplements three to four times a year. These are newspaper-style promotions of the health system services that provide an excellent place to promote ACP, letting people in the community know what to do and where to get assistance. When national or state stories about end-of-life decision making occur, such as the Terri Schiavo dilemma in Florida, we conduct interviews, hold public forums, and write articles to remind our community about the resources available to assist with ACP. During the 2009 healthcare reform debate and controversy over claims that reimbursement for ACP would contribute to a death panel society, we agreed to open our doors to several national media groups who wanted to learn more about the Respecting Choices approach to ACP ( It is helpful to develop a relationship with local news reporters. Invite them to learn more about the ACP program in your community and integrate this knowledge into their related stories and newscasts. 128

135 TARGET ACP EDUCATION AND ENGAGEMENT Typically, it is impossible to meet the needs of the whole community simultaneously, and planners must make decisions about priority populations, available human and financial resources, and time. We recommend you consider the following target population strategies: 1. Provide First Steps ACP education and engagement within community and outpatient settings. For a sample of program goals and agenda, see Appendix 4, page 145. This type of program can be offered in the following settings: faith communities; senior centers; orientation for healthcare employees. (One of the best ways to reach the community is through your healthcare organization s employees. Include ACP education for employees in orientation and at annual health fairs and inform them of the available resources for assistance. Encourage employees to engage their families in ACP activities.); health prevention activities (e.g., health fairs); and disease management groups such as heart failure clinics, chronic kidney dialysis departments, and diabetes groups. (Patients participating in disease management clinics typically receive group education on such preventive strategies as diet, medications, and lifestyle changes. First Steps ACP can be woven into group education, which helps normalize the conversation, addresses disease-specific concerns, and exposes a larger number of individuals to ACP information.) 2. Design education and engagement programs focused on selected skills to help people with the ACP process. For example, a workshop on how to choose a qualified healthcare agent is effective in demonstrating the skills necessary for talking to loved ones and for preparing selected agents for a future decision-making role. 3. Evaluate opportunities to introduce ACP into group education classes for those who have a chronic illness, such as heart failure or diabetes. These types of group settings provide easy access for ACP engagement and normalization of the conversation. For example, education for such groups could focus on the benefits and burdens of selected life-sustaining treatment, such as CPR or airway management, or comfort care options. This type of ACP education would be specifically useful for those patients with chronic, progressive illness experiencing decline and in need of Next Steps ACP or whose death in the next 12 months would not be a surprise. 129

136 ASSESSING THE ACP NEEDS OF DIVERSE POPULATIONS We have much to learn about what it means to be sensitive to the ACP needs of diverse populations that reside in our communities (Lorenz et al., 2004). What is diversity and why does it matter? Once you understand your community s diversity, what strategies can be designed for education and engagement? This discussion will not provide a comprehensive review of the values and beliefs of the diverse groups that live in a community. Rather, we discuss strategies to address the sensitive ACP needs of diverse populations. What is Diversity and why does it matter? One of the first challenges in addressing diversity is to define and describe the diversity that exists in your community. What are the major groups and how would you develop a partnership with them to promote ACP education and engagement? Consider the following categories of diversity: culture, religion, physical and intellectual capabilities, socioeconomic status, literacy level and spoken language, sexual orientation, age, and gender. The standard approach to ACP is based on the Western value of autonomy, which often makes the following assumptions (Hern, Koenig, Moore, & Marshall, 1998): Individuals desire information and want to be educated. Individuals want to participate in medical decisions that affect their care. Individuals are willing to talk about issues concerning death and dying. Information about benefits and burdens of life-sustaining treatment will logically affect a person s treatment choices. The belief in medical miracles has no place in medical decision making. ACP terminology is understood by everyone. These assumptions may clash with a person s cultural or religious beliefs, or disability concerns. ACP facilitators learn process these assumptions to avoid creating an ACP approach that is offensive or ineffective. Research has demonstrated significant gaps in our past approaches and suggests strategies for making progress in addressing the ACP needs of diverse communities (Wenger et al., 130

137 2008). Healthcare providers themselves identify significant gaps in their understanding of cultural issues and related end-of-life implications (Wallace et al., 2007). Respecting Choices emphasizes making individual assessments based on a person s values, goals, beliefs, and feelings. This discourages making assumptions based on the norms of a group in which the individual belongs. While not intended to be a comprehensive description, the following examples are evidence of the challenges faced when addressing diverse groups on the topic of ACP. Culture. It has been well documented that non-white groups are less knowledgeable about ADs and are less likely to participate in ACP (Kwak & Haley, 2005). Some research has found that African-Americans are resistant to participation in ACP due to distrust of the medical profession and a reliance on spiritual factors to guide decision making (Blackhall et al., 1999). Other studies, however, have offered different perspectives. In focus group interviews conducted in nursing homes, African-American residents expressed an interest in end-of-life discussions with family and the need for the completion of ADs (Ott, 2008). Additionally, research has found that some groups (e.g., Asian, Hispanic, and Native American) prefer to avoid ACP discussions and trust family or spiritual leaders to make end-of-life decisions when and if the need arises (Blackhall et al., 1999; Matsumura et al., 2002; Searight & Gafford, 2005). Religion. A person s religious or spiritual values may have a significant impact on the approach that is needed for ACP engagement. What does my religious affiliation say about forgoing life-sustaining treatment? That s a question many people will ask as they begin thinking about ACP and ADs. In fact, for many, it would be unthinkable to make life-and-death decisions without considering theological and ethical positions. People may wonder about the teachings and principles of their religious organization when considering, for example, the withdrawal of life-sustaining treatment, the use of medication for comfort, and the issues that surround artificial nutrition and hydration (Sulmasy, 2005; True et al., 2005). Physical and Intellectual Disabilities. Individuals with physical disabilities that is, serious and permanent orthopedic or mobility impairments, such as spinal cord injuries, multiple sclerosis or muscular dystrophy or with intellectual disabilities that is, cognitive impairment of varying degrees from defects at birth or early age are also challenged when approached about ACP. Unfortunately, a common approach to ACP for individuals with disabilities has often included biased personal or professional views about quality of life and the perception that less aggressive treatment is warranted (Asch, 2005; Gill & Voss, 2005). The American Association on Intellectual and Developmental Disabilities clearly acknowledges the value of end-oflife decision making in their position statement on Caring at the End of Life ( but it also acknowledges a history of discrimination and lack of involvement in ACP policies. Disability rights activists and groups are ever vigilant to the types of ACP that is promoted within the community and seek to ensure that their perspectives are integrated (Botsford, 2000; Botsford 2004). 131

138 To develop strategies that fully address education and engagement, it is important to understand the interests and needs of the various cultures, religions, and disability groups that exist within your community. STRATEGIES TO ADDRESS ACP EDUCATION AND ENGAGEMENT FOR DIVERSE COMMUNITIES Respecting Choices faculty has provided ACP consultation and education for over 10 years in a wide variety of cultures and locations, including Australia, Germany, Singapore, Spain, and Canada, in addition to diverse communities within the United States. We have witnessed the similarities we share with people around the globe and have been impressed by the passion of community leaders to develop sensitive approaches to ACP. We share the inherent human need to respect the goals, values, and beliefs of all people and to develop better communication and systems to honor their informed healthcare decisions. Our experiences have convinced us that the Respecting Choices approach to ACP is well received by the wide variety of communities and populations served. A few of the teams we have worked with provide testimony to the acceptability of the Respecting Choices approach in diverse cultures and locations. A randomized controlled trial of an adaptation of the Respecting Choices approach to ACP in Australia called Respecting Patient Choices studied the impact of this approach on end-of-life care in elderly patients (Detering, Hancock, Reade, & Silvester, 2010). End-of-life wishes were significantly more likely to be known and followed for patients in the intervention group than for those in the control group. Family members of intervention group patients who died experienced significantly less stress, anxiety, and depression than those of the control group patients. More specifically, intervention patients were significantly more likely to be satisfied with overall care, being involved in decision making, and being listened to. This level of satisfaction provides a level of evidence that the approach is culturally sensitive. Implementation of the Respecting Choices program called Let s Talk in a large health authority in British Columbia, Canada, began through a successful pilot project of 35 patients in a renal dialysis unit (Grant, Barwich, Rush, & Tayler, 2007). Patients willingly participated in ACP discussions and typically expressed a sense of relief and gratitude. Of note is that among the 35 participants, 9 diverse groups were represented: 10 Punjabi, 2 First Nations, 1 Hindu, 1 Muslim, and 1 each Greek, Cantonese, South Asian, and Vietnamese. A small randomized controlled trial that included the Respecting Choices approach to ACP was conducted on 38 dyads of medically stable adolescents (age 14-21) with HIV/AIDS and their surrogates (Lyon et al., 2009). Adolescents in the intervention group reported feeling that their attitudes and wishes were understood by the interviewer. Intervention families rated the overall quality of the ACP discussion as very good to excellent. Ninety-two percent of the adolescents in the study population were African-American. 132

139 These examples offer testimony to the receptivity of diverse patient populations to the Respecting Choices approach. Specifically, the concepts described in this chapter provide the framework for meeting the needs of all individuals. When these concepts and strategies are adopted as a standard of care for everyone, many of the challenges in engaging people from diverse communities to understand and participate in some level of ACP are addressed. In addition, we offer the following suggestions to provide assistance as you develop strategies to meet the needs of the diverse populations within your community. When recruiting ACP educators who will interact with diverse communities, consider an assessment of their values and personal biases through activities such as values clarification exercises, case studies representing diverse opinions, and education on the diverse sub-groups within your community. It is important for ACP educators to fully understand their own perspectives and to appreciate how these may influence their ability to communicate effectively with others and demonstrate respect for all points of view. The National Center for Cultural Competence ( has a variety of resources, including self-assessment tools, to increase awareness and sensitivity of cultural differences. Recruit individuals for the role of ACP educators who are members of the diverse group you would like to engage. For example, in designing a community ACP engagement campaign in one largely African-American Baptist church, we recruited a member of this congregation who was an African-American nurse. She was familiar with the values, norms, and terminology of her community, was a known and respected member, and was familiar with healthcare teaching. These qualities helped lessen concerns about trust and communication. Create a plan for dissemination of ACP to diverse communities and be willing to help design the approach that could be successful. Decide where you want to begin, what you need to learn, and what materials you will need to. Many of the teams we have worked with have created written materials (e.g., AD documents, planning guides, posters) in other languages, integrated common terminology known to the community, organized focus groups to pilot test the designed approach, and systematically gathered data on these tactics. For example, one team who wanted to include the deaf community in their ACP dissemination plan invited members from this community to attend the First Steps Facilitator Certification course. This team created a video that included sign language captioning which was used to further engage the deaf community. Develop strategies to address language and reading comprehension barriers. Consider the need to train interpreters as ACP educators. Develop written materials at a elementary-grade reading level and use audiotape presentations of ACP for those who have low reading comprehension. Create an atmosphere of openness regarding different options to engage people in the process of ACP. For example, during implementation of Respecting Choices in 133

140 Singapore, it became clear that families were intimately involved in decision making for a loved one, and group decision making was a comfortable and acceptable norm. Examples of how to include family members in ACP discussions were integrated into education and engagement strategies. Additionally, some individuals resist the completion of a legal document for other reasons. When individuals view the AD document as an uncomfortable and legalistic tool, ACP programs must offer flexible options for recording preferences. While there is a great deal to learn about creating effective ACP strategies that are sensitive, respectful, and engaging for all members of our communities, the Respecting Choices approach has consistently demonstrated successful application in many diverse populations. This chapter has focused on the design of ACP education and engagement as a key element in building an effective ACP program. We have demonstrated the gaps in past ACP educational initiatives and the ineffectiveness of single-modality programs. We have reviewed the conceptual framework that has guided development of the Respecting Choices educational materials and engagement strategies, and provided you with a host of application examples. Our work has exposed us to a wide range of diverse communities representing many views, values, and perspectives. We have demonstrated how considerate the Respecting Choices approach actually is for the many individuals and families around the world who struggle with the meaning of ACP and how it may affect their lives and end-of-life experiences. We invite you to test our recommendations in your own communities and share your lessons you learn. 134

141 REFERENCES Asch, A. (2005). Recognizing death while affirming life: Can end of life reform uphold a disabled person's interest in continued life? The Hastings Center Report, Spec No, S31-6. Blackhall, L. J., Frank, G., Murphy, S. T., Michel, V., Palmer, J. M., & Azen, S. P. (1999). Ethnicity and attitudes towards life sustaining technology. Social Science & Medicine (1982), 48(12), Botsford, A. L. (2000). Integrating end of life care into services for people with an intellectual disability. Social Work in Health Care, 31(1), Botsford, A. L. (2004). Status of end of life care in organizations providing services for older people with a developmental disability. American Journal of Mental Retardation: AJMR, 109(5), Byock, I., Norris, K., Curtis, J. R., & Patrick, D. L. (2001). Improving end-of-life experience and care in the community: A conceptual framework. Journal of Pain and Symptom Management, 22(3), Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ (Clinical Research Ed.), 340, c1345. Gill, C., & Voss, L. (2005). Views of disabled people regarding legalized assisted suicide before and after a balanced informational presentation. Journal of Disability Policy Studies, 16(1), Grant, S., Barwich, D., Rush, J. L., & Tayler, C. (2007). Advance care planning: What's all the talk about? Canadian Journal of Medical Radiation Technology, 38(4), Guo, B., & Harstall, C. (2004). ADs for end-of-life care in the elderly: Effectiveness of delivery modes. IP #20). Edmonton, Alberta, Canada: Alberta Heritage Foundation for Medical Research. Hern, H. E.,Jr, Koenig, B. A., Moore, L. J., & Marshall, P. A. (1998). The difference that culture can make in end-of-life decisionmaking. Cambridge Quarterly of Healthcare Ethics: CQ: The International Journal of Healthcare Ethics Committees, 7(1), Hwang, K. (2005). Attitudes of persons with physical disabilities towards physician-assisted death: An exploratory assessment of the vulnerability argument. Journal of Disability Policy Studies, 16(1), Kwak, J., & Haley, W. E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist, 45(5), Landry, F. J., Kroenke, K., Lucas, C., & Reeder, J. (1997). Increasing the use of ADs in medical outpatients. Journal of General Internal Medicine, 12(7), Lorenz, K., Lynn, J., Morton, S. C., Dy, S., Mularski, R., Shugarman, L., et al. (2004). End-of-life care and outcomes: Summary. (Evidence Report/Technology Assessment No. 110). Rockville, MD: Agency for Healthcare Research and Quality. (AHRQ Publication Number 05-E004-1) Lyon, M. E., Garvie, P. A., McCarter, R., Briggs, L., He, J., & D'Angelo, L. J. (2009). Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics, 123(2), e MacInnis, D. J., Moorman, C., & Jaworski, B. J. (1991). Enhancing and measuring consumers' motivation, opportunity, and ability to process brand information from ads. The Journal of Marketing, 55(4), Mah, M. W., Deshpande, S., & Rothschild, M. L. (2006). Social marketing: A behavior change technology for infection control. American Journal of Infection Control, 34(7), Matsumura, S., Bito, S., Liu, H., Kahn, K., Fukuhara, S., Kagawa-Singer, M., et al. (2002). Acculturation of attitudes toward end-of-life care: A cross-cultural survey of Japanese Americans and Japanese. Journal of General Internal Medicine, 17(7), Miller, W. R., & Rollnick, S. (2002). Motivational interviewing: Preparing people for change. New York: Guilford Press. Ott, B. B. (2008). Views of African American nursing home residents about living wills. Geriatric Nursing (New York, N.Y.), 29(2), Prochaska JO, & Velicer WF. (1997). The transtheoretical model of health behavior change. American Journal of Health Promotion: AJHP, 12(1), Rothschild, M. L. (1999). Carrots, sticks, and promises: A conceptual framework for the management of public health and social issue behaviors. The Journal of Marketing, 63(4), Searight, H. R., & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3),

142 Sulmasy, D. P. (2005). Terri Schiavo and the Roman Catholic tradition of forgoing extraordinary means of care. The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics, 33(2), Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association between ADs and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55(2), True, G., Phipps, E. J., Braitman, L. E., Harralson, T., Harris, D., & Tester, W. (2005). Treatment preferences and advance care planning at end of life: The role of ethnicity and spiritual coping in cancer patients. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine, 30(2), Wallace, M. P., Weiner, J. S., Pekmezaris, R., Almendral, A., Cosiquien, R., Auerbach, C., et al. (2007). Physician cultural sensitivity in African American advance care planning: A pilot study. Journal of Palliative Medicine, 10(3), Wenger, N., Shugarman, L. R. & Wilkinson, A. (2008). ADs and advance care planning: Report to Congress. Retrieved 12/3, 2009, from Westley, C., & Briggs, L. A. (2004). Using the stages of change model to improve communication about advance care planning. Nursing Forum, 39(3),

143 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Chapter 4 Appendices 137

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145 APPENDIX 1: PRE- AND POST-FIRST STEPS COMMUNITY ADVANCE CARE PLANNING PROGRAM PARTICIPANT SURVEY Circle the answer that best reflects your opinion. 1. I feel I am able to start a discussion about the use of future, potentially life-sustaining medical treatment with those close to me (strongly disagree) (strongly agree) 2. I feel I have enough knowledge to discuss my views of future, potentially life-sustaining medical treatment with those close to me (strongly disagree) (strongly agree) 3. I feel it is important to have a discussion of future, potentially life-sustaining treatment with those close to me (strongly disagree) (strongly agree) 4. I am likely to have a conversation with those close to me about future, potentially lifesustaining medical treatment (strongly disagree) (strongly agree) 139

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147 APPENDIX 2: FIRST STEPS ACP PROTOCOL FOR ATTORNEYS 1. Prepare client who is requesting the completion of an AD: Send client information on ACP and ADs. Ask client to come prepared with questions from reviewing the information. Suggest client bring the person they think they will choose as their healthcare agent to the meeting with them. 2. Review the client s questions and concerns. 3. If the client is a relatively healthy adult, assist them in selecting a surrogate decision maker, taking into account the characteristics of an ideal agent; determining the client s goals for medical care if he or she were to permanently lose the ability to know who they were or who they were with; and determining if the client has any religious, spiritual, and/or cultural beliefs that might influence treatment preferences. 4. Refers the client to an appropriate healthcare provider and/or ACP facilitator in the community when The client has questions or concerns regarding their current health problems, future implications of their health problem, and potential options for future medical care. The client has questions that the attorney cannot answer. The client has significant health problems and has never had this type of a discussion with their healthcare provider. 5. Provide necessary follow-up after assisting in the completion of the AD: Provide client with a list of people they should discuss their written plan with to include their physician, healthcare agent, appropriate family and friends. Discusse to whom the AD should be sent, including the physician, healthcare organization, and chosen healthcare agent. 141

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149 APPENDIX 3: ATTORNEY ACP SURVEY Please complete the following questions related to assisting clients in completing an AD. Your commitment to a timely response is appreciated. 1. Do you initiate the need to complete an AD with your clients? YES If yes, NO a. Percentage of clients you initiate this discussion with: percent b. Which clients do you initiate this discussion with? All Only clients who express interest Only clients who are doing financial planning 2. Describe the type of discussion you typically have with your clients on completing an AD: General information Specific healthcare issues and concerns Other: 3. Do you send your clients information on ADs before they are scheduled to meet with you? YES If yes, what do you send them? NO 4. Do you include the client s chosen surrogate decision-maker (agent) in your discussion? YES NO Sometimes - indicate when: 5. How often do your clients raise questions (e.g., about document completion or choices they can make) that you do not feel prepared to answer? Often Rarely Never 6. Do you make referrals for your client to an appropriate healthcare provider to assist them in completing their AD? YES If yes, describe the system for making referrals: NO 7. What AD forms do you recommend for your clients? The living will The State of Wisconsin Power of Attorney for Healthcare Other - please describe: 8. After assisting a client in completing an AD a. What do you tell your client to do with the document? b. What do you do with the completed document? Other comments? 143

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151 APPENDIX 4: FIRST STEPS ACP EDUCATION AND ENGAGEMENT SAMPLE PROGRAM I. Introductions II. Opening Engagement Strategy (Choose a strategy that helps participants connect with the subject matter through storytelling.) Ideas include Carol Goodman story, story of an end-of-life experience that did not go well and what was learned, small group discussion with focus group questions, and invited guest who tells a personal story about end-of-life experience. III. Provide an overview of basic ACP for all adults IV. Give advice on how to take the next step V. Distribute tools (e.g., ACP information booklet, planning guide, information card) for healthcare agents that can be used to stimulate ACP discussion with selected healthcare agent and other family members. VI. Develop a follow-up plan for additional assistance. 145

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153 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G CHAPTER 5 BUILDING YOUR ACP PROGRAM KEY ELEMENT #4: QUALITY IMPROVEMENT 147

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155 CHAPTER 5 BUILDING YOUR ACP PROGRAM KEY ELEMENT #4: QUALITY IMPROVEMENT It is impossible to develop a successful ACP program without integrating the principles of quality improvement. If you don t measure it, you can t improve it is the often-repeated phrase that forms the foundation of this key element of any ACP program. The success at Gundersen Health System resulted from ongoing efforts to design and implement the best ACP processes and then develop them over time through quality improvement cycles. The quality improvement cycles you design will evaluate the effectiveness of the ACP microsystem you have created. As discussed in Chapter 1, a successful ACP microsystem is a series of processes and materials designed to identify and honor a patient s informed healthcare decisions. Often, the initial ACP processes and materials that are designed (e.g., an improved AD document, an ACP team referral mechanism) are not perfect. Quality improvement cycles will help identify the changes that are needed. Once tested and improved, these processes and materials can be more confidently hardwired into the routines of care to achieve desired ACP outcomes. Many ACP initiatives aim to achieve a narrow set of goals, e.g., an increase in AD completion or the design of a new community education campaign. These goals are often selected to comply with federal regulations (e.g., the Patient Self-Determination Act or The Joint Commission standards) rather than to improve clinical outcomes. By first determining what your ACP initiative s critical, clinical goals should be, much more can be achieved. Your team needs to develop a consensus on the measureable goals you intend to achieve through the revision of your ACP processes and materials. This long-term and strategic plan will guide your implementation and pilot projects and establish measurements for reaching these goals. This chapter begins by reviewing recommendations from national organizations and leaders regarding what constitutes quality ACP, demonstrating consensus on the relationship of ACP to quality end-of-life care. The Respecting Choices Five Promises is a framework for developing a multi-faceted approach to design and quality improvement activities. Lastly, we offer specific guidelines for how to get started on designing an ACP quality improvement plan and suggest tools for measuring selected outcomes. 149

156 WHAT ARE REALISTIC ACP OUTCOMES? Respecting Choices believes that the ultimate outcome of an effective ACP microsystem is that a patient s informed healthcare decisions are honored by the patient s family and healthcare providers. The ability to achieve this ultimate outcome requires time and a multi-faceted approach to the design of an effective and comprehensive ACP program. Respecting Choices uses the Five Promises model, described on pages Design of an ACP initiative requires an understanding of the interconnections with end-of-life and palliative care. When conceptualized as a routine component of good patient care over the lifespan of an individual, ACP clearly has an important role in achieving the Institute of Medicine s definition of a good death: one that is free from avoidable distress and suffering for patients, families, and care givers; in general accord with patients families wishes; and reasonably consistent with clinical, cultural, and ethical standards. ( The ACP connection to quality end-of-life care is also widely supported by national groups and experts. The National Priorities Partnerships (NPP), composed of 48 partner organizations and dedicated to improving the health of the nation, has identified six national priorities ( One of these relates to ACP and includes the need to empower patients and their families to make informed future healthcare decisions. The NPP recognizes quality improvement projects as effective mechanisms to progress toward these recommended priorities. Additionally, the National Quality Forum (NQF) has issued Preferred Practices to improve end-of-life care, specifically identifying five ACP outcomes as important ( documentation of a designated surrogate, documentation of goals of care and treatment preferences at regular intervals, conversion of treatment goals into medical orders, availability of ADs across settings of care, and community collaborations to promote completion of ADs for all individuals. The NQF has also issued a list of safe practices for better healthcare ( _Update.aspx). Safe Practice 6 encourages the development of systems to ensure that patients receive only the type of life-sustaining treatment they desire. Systems to support this safe practice include sufficient written documentation of the patient s decisions and its availability in the medical record. In support of NQF s Safe Practice 6, the Leapfrog Group has incorporated it into its hospital survey ( The Leapfrog Group is a voluntary program that has a variety of initiatives aimed at increasing access to healthcare information. One initiative rewards hospitals that demonstrate evidence of quality and safe patient care ( 150

157 Several national organizations recommend systematic improvement for older persons with chronic illness: the Institute of Medicine (Institute of Medicine. Committee on Quality of Health Care in America, 2001), the Institute for Healthcare Improvement ( and the Institute for Clinical Systems Improvement ( Consistent with these national recommendations, Reuben (Reuben, 2007) identifies the following goals for care of patients with advanced illness: Care must be individualized based on a patient s goals, values, and resources. Care must follow best practices based on current evidence. Teamwork is required to meet the needs of patients rather than focus on physician responsibilities. Care must be coordinated across sites of care. Available resources and the environment in which patients receive care must be assessed. Efforts must be made to include patients as active participants in their care. Patient-centered outcomes are equally important, and studies have reported on the patients perspectives regarding end-of-life care. For example, Singer and Bowman (2002) studied what quality care at the end of life means from the patient s perspective. Studying patients on dialysis, patients diagnosed with AIDS, and residents in a long-term care facility, Singer and Bowman identified five domains of quality end-of-life care, three of which relate specifically to the effectiveness of ACP: 1. avoiding inappropriate prolongation of dying by discussing realistic goals of care, 2. achieving a sense of control over end-of-life decisions through a well-informed surrogate decision maker, and 3. relieving the burden of substitute decision making for life-sustaining treatment. Respecting Choices recommends identifying long-term goals for your ACP program that include outcomes with a direct impact on patient care (e.g., ability to make informed healthcare choices or evidence of patients wishes honored at end of life). These outcomes cannot be achieved overnight; they require continuous improvement of the various ACP processes and materials you have designed. Two types of performance measures must be integrated into the design of your ACP QI implementation plan: process measures and outcome measures. PROCESS MEASURES Process measures assess adherence to the policies and procedures developed to improve the ACP service you intend to deliver. In the initial phases of redesign, you will create or revise materials, guidelines, and processes that will need to be evaluated on a small scale before the program is more widely disseminated. 151

158 Examples of processes to be measured during the initial phases of ACP redesign include patient interest in participating in ACP facilitation with their chosen healthcare agent when invited, documentation of the ACP discussion in the medical record, patient completion of a written advance care plan after participating in ACP discussions, patient satisfaction with the ACP discussion, AD document clarifies patient goals for life-sustaining treatment, storage of AD in the medical record and its availability to other healthcare providers, and ACP facilitator role is appropriately supported so that patients have access to qualified ACP assistance as needed. Eventually, your organization s written policy and procedure on ACP should address the following process measures: Are ACP discussions consistently documented, and is that documentation retrievable? Are ADs: o o o o o reviewed for accuracy and completeness prior to being entered into the medical record? stored in a consistent place (e.g., in the medical record)? reviewed upon each admission for update and revision within 24 hours of admission? available at each admission? transferred when a patient moves to a different healthcare organization or home? Are roles and responsibilities of the ACP team characterized as follows: o o o o o A qualified team of ACP facilitators is identified. ACP facilitators are provided standardized ACP skills training. All staff (e.g., RNs, social workers, clergy, physicians) receive information on their ACP responsibilities during orientation. A system of referrals for ACP facilitation is established and used by staff. All physicians incorporate AD into treatment orders. 152

159 OUTCOME MEASURES Outcome measures evaluate whether processes are making an impact on desired patient care. Desired outcomes cannot be achieved until critical processes are hardwired into the routines of patient care. Ultimately, the successful ACP program will provide evidence that a patient s informed healthcare decisions are honored when appropriate. We predict that, with a systematic and focused implementation over approximately a three-year period, the following outcomes can be achieved: increased percentage of written advance care plans in all settings of care in a geographic area at the time of death to 75 percent, increased availability of advance care plans in the medical record of the healthcare organization caring for the decedent to 96 percent, increased inclusion of an appointed surrogate in the ADs to 60 percent, reduced number of hospital deaths by 10 percent of baseline, increased number of hospice admissions by 10 percent over baseline, increased median length of hospice admission by 10 percent over baseline, increased transfer of patients written preferences to appropriate medical orders by 90 percent, increased family reports of a discussion with the deceased family member about plans for medical care to 90 percent, higher patient satisfaction with the ACP discussion to 90 percent or higher, decreased costs of care in the last two years of life, decreased cost of inpatient care, decreased time in ICU in the last six months of life, and decreased readmission rates within 30 days. Patient-Centered Measures have also been described as important features of any performance improvement activity (NQF, These include evidence of respect for patients values, provision of emotional support, and the availability of customized patient and family information. These concepts are integrated into the Respecting Choices outcome measures described above. There is no simple way to achieve the critical outcomes that demonstrate a direct impact on patient care. However, with a sustained and organized improvement process, incremental progress can be measured. As this progress is recognized, improved ACP processes and materials become hardwired into the routines of care, resulting in an ACP microsystem that demonstrates a significant impact on patient care. Respecting Choices has demonstrated that this improvement process works. 153

160 THE FIVE PROMISES OF AN EFFECTIVE ACP PROGRAM Respecting Choices has developed a framework called The Five Promises to identify ACP outcomes and the impact this type of program has on patient care. These are The Five Promises: The Five Promises 1. We will initiate the conversation with our patient about their preferences for future medical care. 2. We will provide assistance with ACP to those patients who express an interest in addressing these issues. 3. We will make sure plans are clear when the planning process has reached an end. 4. We will maintain and retrieve these plans whenever and wherever they are needed. 5. We will appropriately follow these plans when the patients can no longer participate in their own decision making. Each promise is examined below in detail to provide examples of the processes that are necessary to ensure that the promise is met. PROMISE #1: WE WILL INITIATE THE CONVERSATION WITH OUR PATIENTS ABOUT THEIR PREFERENCES FOR FUTURE MEDICAL CARE. We believe this promise involves much more than the standard patient questions on admission to the hospital: Do you have an AD? and Would you like information? While these questions may suffice in meeting The Joint Commission standard, they do little to motivate patients to actively participate in the ACP process. Promise #1 involves a commitment to communication strategies that actively encourage individuals to learn more about ACP and how it will benefit them. We have identified the processes related to this promise: With whom are these conversations being initiated? Are we addressing the need for this type of communication for all stages of planning (e.g., First Steps, Next Steps, and Last Steps)? Where are these conversations occurring clinic setting or community workshops? 154

161 Which professionals (e.g., physician, nurse, social worker, or chaplain) are initiating ACP discussions? Do they have the requisite communication and facilitation skills for effective ACP discussions? PROMISE #2: WE WILL PROVIDE ACP ASSISTANCE TO THOSE PATIENTS WHO EXPRESS AN INTEREST. The type of ACP assistance patients need varies. Therefore, this promise involves a number of related processes: What type of assistance is provided for those who express an interest in ACP? Are there different levels of ACP facilitators to meet the differing needs of patients (e.g., healthy adult versus chronic progressive illness)? How is the type of ACP facilitation required by the patient assessed? Are a patient s plans re-explored on a regular basis (e.g., every hospital admission, changes in healthcare status)? Is ACP individualized to the diverse needs of the community (e.g., culture, religion, disabled)? What are the qualifications of those who are providing ACP assistance? Is there a standardized educational training program for those who are offering ACP assistance? Is this training an expected component for ACP facilitation competency? Are there defined roles for all members of the ACP team? Is the number of ACP facilitators sufficient to meet the needs of the patient population? What is the satisfaction level among patients, families and healthcare providers with the current practice of ACP? PROMISE #3: WE WILL MAKE SURE PLANS ARE CLEAR WHEN THE PLANNING PROCESS HAS REACHED AN END. One important goal of an ACP program is to honor informed healthcare choices. This goal cannot be achieved if written plans do not adequately reflect patients goals, values, and beliefs. (This promise involves examples of processes that raise the level of clear communication in the developed advanced care plan.) What is the meaning of clear? Are ADs reviewed for legal compliance, clarity, and understanding before entering them into the patient s medical record? Does the written plan adequately reflect the individual s goals, values, and preferences? Are plans clinically relevant and specific to the patient s stage of illness? Are plans adequately communicated to those who need to know? To be clear, plans must be understood by the patient s chosen healthcare agent, appropriate family members, and healthcare providers. What is the process to ensure this type of communication? PROMISE #4: WE WILL MAINTAIN AND RETRIEVE THESE PLANS WHENEVER AND WHEREVER NEEDED. 155

162 A well-designed plan that adequately reflects an individual s goals, values, and preferences is ineffective if it is not available. To honor this promise, a variety of systems must be in place. What is the system for entering written plans into the patients medical records? Are they entered in a timely manner regardless of where they are created (e.g., attorney s office, outpatient setting)? Are physicians or other healthcare providers notified of the entry of written plans? Are written plans available when decisions needed to be made, upon transfer to another healthcare facility, and within 48 hours of admission to a hospital? What is the system for honoring patients verbal treatment preferences? When patients make decisions that differ from previously documented decisions, how do these get communicated effectively? What is the system for identifying problems with maintaining or retrieving written plans? Is there a quality improvement process that routinely assesses this system? PROMISE #5: WE WILL APPROPRIATELY FOLLOW THESE PLANS WHEN PATIENTS CAN NO LONGER PARTICIPATE IN THEIR OWN DECISION MAKING. Ultimately, the success of your ACP program will be measured by evidence that (1) patients informed healthcare decisions were honored, (2) medical orders were written accordingly, and (3) by the quality of the patients end-of-life experience. How do we know if written plans are honored? Are medical record audits conducted that search for evidence that treatment preferences were transferred to medical orders in a timely manner? Are families of those who have died satisfied that their loved one s ACP decisions were followed? When it appears that a written plan has not been followed, what process is in place to address the issue? Who takes responsibility for appropriate follow-up? Do ethics committee consultations occur? Are conflicts resolved adequately? Does the process result in system-wide changes to prevent such problems in the future? The Respecting Choices Five Promises framework is developed into a worksheet in Appendix 1, page 167. Your quality improvement team can use this as a tool to assess the current status of ACP in your organization, to create process workflow diagrams for analysis, to identify gaps in the workflow, and to brainstorm ACP design ideas. PRINCIPLES FOR ACP QUALITY IMPROVEMENT INITIATIVES There are many reasons to invest in ACP quality improvement activities. This is particularly true in the initial phases of comprehensive redesign, but also as a long-term strategy. The initial processes and materials that are designed may not be perfect or accomplish the intended goals. These systems will need modification and improvement as they are tested in the clinical setting. 156

163 Staff may be concerned about the time it takes to change ACP practices. Starting with a small sample size makes the workload more manageable and helps people stay invested in the long-term goals. Staff may be asked to integrate new methods of communication and facilitation skills into their ACP practices. A small pilot project allows time to practice new skills and build competence for more widespread dissemination. As new solutions emerge, such as with the integration of electronic medical records and related ACP application requirements, the system needs to be redesigned. Quality improvement data is needed to identify gaps in the system that may occur. For example, staff turnover may result in a lack of experience with, or understanding of, previously defined ACP responsibilities. Quality improvement data can also help sustain ACP initiatives by providing evidence of systems efficiencies e.g., an improved rate of availability of written documents in the electronic medical record at the time of admission to a healthcare facility. Demonstrated successes can fuel the passion of those who are leading the implementation phases, as well as engage others who have been less enthusiastic about the ACP initiatives. STEPS IN DESIGNING A QUALITY IMPROVEMENT ACP INITIATIVE The redesign of your ACP program will require the same process improvement strategies and resources needed to develop a new program worthy of system-wide implementation. Most organizations have QI resources available to assist with this process. The recommended steps used by many QI teams are reviewed in this section. Refer to the ACP QI Pilot Project Template in Appendix 2, page 173 for specific ideas. STEP 1: ORGANIZE AN ACP QUALITY IMPROVEMENT (QI) PROJECT TEAM When recruiting a group of individuals to lead the ACP pilot projects, consider these factors: Who are the champions in your organization or community? Which individuals are passionate about improving ACP and can provide informal leadership to make change happen? Who can identify and overcome barriers to implementation? Who is on the front line and vested in making the change? Answers to these questions represent a few of the desirable qualifications for the ACP implementation team. Of course, as with any other QI project, it is helpful to have people on board who understand the QI process and can provide valuable leadership for designing measurement methods. The QI improvement team should define its structure and function, such as identifying members roles and responsibilities (e.g., team coordinator), developing a budget, creating a vision statement, and establishing clear reporting relationships with upper-level administration. 157

164 STEP 2: GATHER BASELINE DATA How effective are your current ACP processes, and what outcomes have you achieved? It is important to gather and document baseline data on the ACP processes you are currently using, as well as on the outcomes you are achieving. These data will assist you when planning relevant pilot projects and will serve as a baseline against which to compare subsequent outcome data. 1. Process measures. What are the current policies, procedures, and standards of care for ACP? Examine the written guidelines and regulations (e.g., The Joint Commission), assess compliance with current practice, and identify gaps and opportunities for improvement. The Respecting Choices Process Outcome Measurement Tool in Appendix 3, page 177, can help you gather this information. Process flow maps help to visualize current practice. The resulting data will enable you to more easily identify the processes that are working and those that need improvement. 2. Outcome Measures. As previously stated, it will take time to demonstrate improvement in outcome measures (i.e., those that measure the effect of processes on desired patient care). It is important to gather data on the outcomes you are currently achieving, as well as on those you hope to achieve. You can begin by reviewing the list of recommended outcome measures (pages 151) and collect baseline data on current practice. For example, to measure availability of clear advance care plans, we recommend that you conduct a survey of the impact of your current ACP efforts on quality of care at the end of life. This can be accomplished by auditing the medical records of the last 50 patients to die in your organization or of the last 50 patients to die from your initial target population. The intent of this medical record review is to determine whether AD information (e.g., AD document and narrative documentation of discussion) is present in the record, to examine the types of patient preferences within this documentation, and to determine whether the record contains medical orders consistent with patient preferences. These types of data focus on the ultimate goal of ACP, which is to honor patients informed healthcare decisions. The Chart Audit Tool in Appendix 4, page 179, can assist you in collecting these types of data. Baseline ACP program data is available from other sources, as well. For example, the Dartmouth Atlas Project uses Medicare data to provide information on variations in healthcare in different regions of the country, in individual hospitals, and pf affiliated physicians ( In 2008, the Dartmouth Atlas published a report Tracking the Care of Patients with Severe Chronic Illness. This report documents wide variations in care for Medicare recipients in the last two years of life. Gundersen Health System was shown to provide high-quality care to this patient population at a cost much lower than the national average. Gundersen Health System was reimbursed approximately $18,000 per decedent in the last two years of life, compared with the national average of approximately $26,000. The Dartmouth Atlas Website provides interactive tools with which organizations can plot their own performance on a number of variables. These include inpatient days per decedent, days spent in 158

165 the ICU in the last six months of life, percent of deaths in the hospital, and utilization of hospice services. The Dartmouth Atlas report concludes, If the resources and utilization of efficient providers were realized by all providers managing the care of people with severe chronic illnesses during the last two years of their lives, Medicare spending for this group could be reduced by 30 percent. You may also want to describe the number and types of ethics consultations in your organization. What issues relate to end-of-life decision making? With a comprehensive and staged ACP program, you could expect the number and category of ethics consultations to shift from this baseline. STEP 3: DESIGN A BASIC ACP MICROSYSTEM As described in Chapter 2, effective pilot projects require that key materials and processes are designed early in the course of your ACP initiative. They include: an effective AD document, patient education and engagement materials, AD communication systems (medical storage and retrieval; POLST, as appropriate), and standards for how to use these tools. These materials and processes will help standardize your ACP activities and decrease the chance of errors. Once these new materials and processes are created, your team will be ready to design an ACP pilot project that includes testing and evaluation. STEP 4: DESIGN AN ACP QI PILOT PROJECT The following principles are useful when designing your ACP pilot projects. They help the team achieve realistic outcomes over a recommended timeframe of four to eight months. Start small. Remain focused on creating successful processes. Support each other as team members. The importance of starting small deserves special emphasis. Full implementation of a comprehensive ACP program can be overwhelming and intimidating. Limiting the scope of the ACP change helps the team move forward in realistic and practical ways. Small tests of change limit the unintended consequences, decrease the need for resources, and build confidence among team members (Lynn, Schuster, Kabcenell, Center to Improve Care of the Dying, & Institute for Healthcare Improvement, 2000). Respecting Choices encourages organizations to use their existing quality improvement resources and apply many of the same improvement practices used for other initiatives. Many QI experts rely on approaches 159

166 similar to the successful experience of the Institute for Healthcare Improvement (IHI) Plan-Do-Study-Act (PDSA) approach ( The PDSA cycle, developed by Associates in Process Improvement ( begins with three important questions that can be answered in any order. These questions include: What is the goal of the project? What is goal of the project (Aim)? How will we know change has occurred (Measurement)? What changes do we think are possible (Changes)? First, the goals of the ACP pilot project must be agreed upon and realistic. In the initial stages of program implementation, it is important to focus on process outcomes that can be accomplished within four to eight months. These process outcomes will concentrate on the effectiveness of the new processes and materials you have created, such as: the development of an ACP team referral mechanism, a document storage and retrieval system, improved patient educational materials, the number of AD documents completed, and patient satisfaction with the ACP-facilitated discussion. How will we know change has occurred? The measurements that are selected will be determined by the goals the team has agreed upon. This allows the team to determine if the change led to an improvement and quantifies the impact. For example, if patient satisfaction with the ACP discussion is chosen as an outcome, the measurement would include some type of post-acp discussion opinion survey to be completed by the patient and returned to a neutral person. An example of this is included in Appendix 5, page 181. What changes are possible? What is the change that the team would like to see? Those working on the team are often frustrated with current practice and have ideas about what they would like to see changed. This team exploration of change can be used as an engagement strategy and team-building opportunity. Once the answers to these three questions are obtained, the PDSA cycle is used to test the most appealing changes within the context of the real world. The Plan involves the strategies to test the change (Who? What? When? Where?). The plan includes the data (measurements) that need to be collected. The Do includes the implementation of the plan on a small scale and time-limited basis. This includes the documentation of problems and other observations that will be integrated into the analysis of the test of change. 160

167 The Study involves a deliberate analysis of the data that have been collected during implementation and observations of what has been learned. The last step, Act. Includes making decisions about what changes need to be made to the Plan and preparing for another test cycle or other dissemination strategies. The PDSA cycle may need to be repeated before you are ready for a more widespread dissemination. STEP 5: COMMUNICATE THE SUCCESS AND LESSONS FROM THE PILOT PROJECTS Once the pilot projects are completed, it is important to inform stakeholders of the lessons learned and the success achieved. At this stage, it is recommended to continue to network with colleagues and organizations to discuss strategies to overcome the barriers identified. STEP 6: DEVELOP NEXT STEPS FOR DISSEMINATION These QI design recommendations offer practical and realistic approaches to getting started. In the end, the gathered data and improved systems demonstrate a level of accountability of which any healthcare organization and community can be proud. Without measuring the outcomes of an ACP program, there is little accountability and no quantifiable way to demonstrate success. The lessons learned and the processes improved through ACP QI projects assist in designing a plan for replication and dissemination, discussed more in Chapter 6. AN ACP QI IMPROVEMENT EXAMPLE (Hammes & Briggs, 2007) In 2000, an ACP work group from Gundersen Health System gathered for a brainstorming session on the status of the current program, what was working, and what needed to be improved. The work group decided to examine the level and quality of ACP discussions with patients with chronic, progressive illness (e.g., congestive heart failure [CHF] and chronic obstructive pulmonary disease [COPD]) in the outpatient setting, with the goal of encouraging early discussion of preferences for future medical care. Three assessments preceded implementation of any changes: physician interviews to explore their views and concerns regarding ADs and the frequency and quality of ACP discussions; medical record audits to determine the number of CHF and COPD patients who had completed ADs; and patient telephone interviews to assess the level of patient satisfaction with ACP discussions. Results of the medical record audit (N = 111) revealed that 48 percent of patients with a diagnosis of CHF or COPD had executed an AD. Of ADs, 94 percent were in the medical record, 24 percent requested no CPR under certain conditions, and 15 percent of the records had evidence of documentation of an ACP discussion. 161

168 Results of the physician interview (Appendix 6, page 183) demonstrated that while a high percentage (89 percent) of physicians initiated ACP discussions, only 26 percent initiated conversations with all patients, reserving these conversations for those more seriously ill (36 percent) or those who were older (16 percent). Physicians identified the main barriers as lack of time and an insufficient pool of people to whom to refer patients for advance care planning. Most physicians were comfortable initiating ACP discussions (84 percent) and supported other qualified professionals having these conversations for all (62 percent) or some (23 percent) patients. The patient telephone interviews revealed that a low percentage of patients reported having ACP discussions with healthcare providers or family. Only 31 percent of patients had discussed their preferences for future healthcare decisions with their physicians, 36 percent with their chosen healthcare agent, and 33 percent with their loved ones. These assessments proved to be effective in raising awareness of the need to improve advance care planning strategies and engage professionals in making suggestions for change. As a result of this quality improvement project, we increased the number of trained ACP facilitators available to this patient population; clarified role responsibilities for ACP in the clinic; investigated strategies for improving documentation of the ACP discussion; and increased focus on improving communication between the patient, chosen healthcare agent, and physician. To improve communication between the patient, chosen healthcare agent, and physician, we designed an Information Card for Healthcare Agents. The card outlines the healthcare agent s responsibilities and suggests strategies to promote increased understanding of patient preferences. In addition, Respecting Choices faculty incorporated strategies for strengthening the role of the healthcare agent into the facilitator manual and certification program. All ACP programs should strive to create a microsystem that (1) assists patients in making informed healthcare choices and (2) creates the processes and materials to honor those choices when appropriate. There are no easy solutions. These outcomes will be realized only through an organized and sustained effort to create, evaluate, and improve the ACP microsystem, which can then be hardwired into the routines of care. Over time, these improved processes and materials will provide evidence of the types of outcomes that affect direct patient care. Ultimately, we strive to demonstrate that our ACP efforts make a difference. We encourage you to think big and develop a long-term vision for your ACP microsystem that does much more than increase the number of ADs completed or conduct multiple community education programs. It can assist patients to make informed, timely, and proactive healthcare choices. It can prepare healthcare agents to make decisions that are truly reflective of their loved ones goals and values, and relieve the stress and burden of substitute decision making. It can provide evidence that a patient s informed healthcare choices are honored in the clinical setting. It can allow patients to die 162

169 where they desire. Above all, an effective ACP microsystem can contribute to a more satisfying end-oflife experience for patients, their loved ones, and their healthcare providers. These are the outcomes we encourage you to strive to achieve. A well-designed quality improvement plan is a key element to developing the type of ACP microsystem that will help you achieve these outcomes. 163

170 REFERENCES Hammes, B. J., & Briggs, L. (2007). Respecting Choices Facilitator Manual (3rd ed.). La Crosse, Wisconsin: Gundersen Lutheran Medical Foundation. Institute of Medicine. Committee on Quality of Health Care in America. (2001). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C.: National Academy Press. Lynn, J., Schuster, J. L., Kabcenell, A., Center to Improve Care of the Dying, & Institute for Healthcare Improvement. (2000). Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians. Oxford; New York: Oxford University Press. Nelson, E. C., Batalden, P. B., & Godfrey, M. M. (Eds.). (2007). Quality by Design: A Clinical Microsystems Approach. San Francisco: Jossey-Bass. Reuben, D. B. (2007). Better care for older people with chronic diseases: An emerging vision. JAMA: The Journal of the American Medical Association, 298(22), Singer, P. A., & Bowman, K. W. (2002). Quality care at the end of life. BMJ (Clinical Research Ed.), 324(7349),

171 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Chapter 5 Appendices 165

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173 APPENDIX 1: THE FIVE PROMISES PROMISE #1: WE WILL INITIATE THE CONVERSATION with our patients about their preferences for future medical care ASSESSING YOUR ADVANCE CARE PLANNING PROGRAM WORKSHEET ASSESSMENT QUESTIONS (Check all that apply) IMPROVEMENT ACTIVITIES (or, How would you get this information?) 1. Who are these conversations being initiated with? all adult patients, even healthy adults (First Steps ACP); adults with advance illness/progressive diseases (Next Steps ACP); and/or adults who we would likely die in the next 12 months (Last Steps ACP). 2. Where are these conversations occurring? in the clinic or ambulatory setting, in the hospital, and/or pre institution (e.g. workshops, attorney s offices) 3. Who is initiating these conversations? all healthcare professionals, only trained healthcare professionals, non-professionals, physicians, and/or other. 167

174 PROMISE #2: WE WILL PROVIDE ASSISTANCE WITH ACP to those patients who express an interest in addressing these issues ASSESSING YOUR ADVANCE CARE PLANNING PROGRAM WORKSHEET ASSESSMENT QUESTIONS (Check all that apply) IMPROVEMENT ACTIVITIES (or, How would you get this information?) 1. What does assistance mean? ACP is defined as a process of assisting an individual to understand, reflect upon, and discuss their relevant treatment choices, ACP means completing a written AD only, individuals are well informed about the meaning of ACP and the contents of ADs, patients treatment preferences are reexplored with changes in their medical condition or response to treatment, patients treatment preferences are reexplored with every admission to the organization, information about ACP is routinely provided to groups within the community, and/or ACP assistance is provided to patients with special needs such as those with mental health problems, developmentally disabled, language or cultural barriers. 168

175 ASSESSMENT QUESTIONS (Check all that apply) IMPROVEMENT ACTIVITIES (or, How would you get this information?) 2. What are the qualifications of providing assistance with advance care planning? there is a training program for professionals who assist with advance care planning, there are well defined roles for the various professionals who assist with advance care planning, and/or there is an adequate number of qualified professionals available in all healthcare settings. 3. What is the satisfaction level with the current practice of advance care planning? there is documentation of advance care planning discussions (not just the AD,) professionals feel there is time to engage in quality ACP, patients and families are satisfied with the quality of ACP discussions, ADs are completed well before a medical crisis, and/or the number of completed ADs is increasing. 169

176 PROMISE #3: WE WILL MAKE SURE PLANS ARE CLEAR when the planning process has reached an end ASSESSING YOUR ADVANCE CARE PLANNING PROGRAM WORKSHEET ASSESSMENT QUESTIONS (Check all that apply) IMPROVEMENT ACTIVITIES (or, How would you get this information?) 1. What is the meaning of clear? all ADs are reviewed for legal compliance, all ADs are reviewed for clarity and understanding, and/or ADs reflect the individual s values and preferences. 2. Are plans adequately communicated? plans are reviewed by the patient s physician, plans are understood by the patient s physician, plans are communicated to the chosen healthcare agent, plans are understood by the chosen healthcare agent, plans are communicated to the patient s loved ones, and/or plans are understood by the patient s loved ones. 170

177 PROMISE #4: WE WILL MAINTAIN AND RETRIEVE THESE PLANS whenever and wherever they are needed for clinical decision making ASSESSING YOUR ADVANCE CARE PLANNING PROGRAM WORKSHEET ASSESSMENT QUESTIONS (Check all that apply) IMPROVEMENT ACTIVITIES (or, How would you get this information?) 1. Identify where written plans are completed with attorneys, in outpatient settings, in community settings, and/or in other local healthcare organizations 2. What is the process for entering written plans into the medical record? written plans are reviewed for accuracy before entering, physicians are notified of an entry of an AD, and/or written plans are available when decisions are needed, upon transfer to another organization, and/or within 48 hours of admission. 3. What is the system for honoring oral treatment preferences? oral directives are routinely documented 4. What is the system for identifying problems with maintaining or retrieving plans? there is a quality improvement program that routinely assesses the ability of the system to maintain and retrieve plans. 5. The POLST system is used in long-term care, in hospice care, and/or in palliative care 171

178 PROMISE #5: WE WILL APPROPRIATELY FOLLOW THESE PLANS when patients can no longer participate in their own decision making ASSESSING YOUR ADVANCE CARE PLANNING PROGRAM WORKSHEET ASSESSMENT QUESTIONS (Check all that apply) IMPROVEMENT ACTIVITIES (or, How would you get this information?) 1. How do we know if written plans are being honored? evidence exists that treatment preferences are transferred to physician orders at the time of admission, when oral directives are given, at the time of death, upon transfer, and/or outside of the organization families of those who have died are satisfied that their loved ones preferences were followed. 2. What happens in situations when it appears the plan is not being followed? responsibility is taken to follow up on situations where it appears a patient s plan is not being followed, and/or consultations to the organizational ethics committee occur when conflicts or concerns regarding patient treatment occurs. 172

179 APPENDIX 2: ACP QUALITY IMPROVEMENT (QI) PILOT PROJECT IMPLEMENTATION DESIGN TEMPLATE The goals of this time-limited (e.g., four to six months) pilot project include: to design a small test of change to evaluate the effectiveness of the new ACP processes and materials developed (e.g., patient recruitment and satisfaction, documentation, facilitator time and skill), and to identify lessons and strategies that assist to streamline dissemination to a wider audience. Review the suggested steps in designing an ACP QI project. Document your plan using the PDSA Cycle on page 158 of this manual or use a template from your organization. STEP 1: ORGANIZE AN ACP QUALITY IMPROVEMENT TEAM A. Recruit and Select Pilot Project Team Members A successful pilot project team experience begins with careful recruitment and selection considerations. There may be groups and individuals interested in participation who (1) are unable to make the necessary commitment of time and energy, or (2) have other barriers that would prevent them from being successful. Consider the following when recruiting and selecting team members: target patient population; selection of representatives from the team to portray the target population in the pilot project (e.g., primary care, hospital unit or department, faith community, or disease management group); support from direct-line managers and organizational leaders; o o Recruit an organizational sponsor who will champion your cause by removing organizational barriers and communicating the importance of the pilot project to appropriate committees and organizational leaders. Recruit resources with quality improvement skills and experience. participant leadership skills that help overcome barriers, develop critical thinking strategies for success, maintain positive attitudes, and communicate passion for the project; interdisciplinary collaboration; and team preparation with strategies for engagement, education, and gradual understanding of the expectations of the project and the opportunity to participate with national leaders. 173

180 Our ACP Quality Improvement Pilot Project Team Members Include: B. Design the Structure and Function of the ACP QI Pilot Implementation Team The pilot team and individuals who participate in this project understand the commitment they are making and related responsibilities. A list of suggested accountabilities of this group includes: committee structure and designation of a project coordinator, schedule of meetings and communication vehicle(s) for team members, self-education on ACP model being implemented, knowledge of ACP systems (AD, patient education materials, and records storage and retrieval) prior to ACP facilitation skills training, design outline of ACP QI Pilot Project Plan, and a plan for continued learning and competence of ACP facilitator skills once certification is achieved. STEP 2: GATHER BASELINE DATA ON ACP OUTCOMES Review the Dartmouth Atlas ( for available data from the Dartmouth Institute for Health Policy and Clinical Practice Center for Health Policy Research that tracks the care of patients with severe, chronic illness. This report includes organization-specific information on resource utilization and quality of care for Medicare recipients in the last two years of life. Develop a process flow diagram on the current ACP practices. Use the Respecting Choices Process Outcomes Measurement Tool (Appendix 3, page 175) to assist with this diagram. Conduct a chart audit on the last 50 deaths from the pilot project target population you have decided to study. The goal of this investigation is to assess the existence of written plans at the time of death, contents of the plan, medical orders consistent with patient preferences, and existence of narrative documentation of ACP discussions. Use the Chart Audit Tool (Appendix 4, page 177) to assist with data collection. Describe the plan for this data collection and include results. 174

181 STEP 3: DESIGN THE KEY SYSTEMS FOR SUCCESSFUL PILOT PROJECT IMPLEMENTATION Respecting Choices recommends that key systems be developed or revised to provide the pilot team members with the tools for implementation success. While these systems may not be perfect, they can be tested and improved as a component of the pilot project design. The revisions of these systems may be completed by an impartial committee (e.g., steering committee). The pilot team will need to understand the revisions and make adaptations as necessary depending on the target population selected. A. Create or revise AD document B. Decide what patient education and engagement materials will be used for the pilot project. C. Identify the system for entering, storing, and transferring completed AD documents and relevant discussions. STEP 4: DESIGN THE ACP QI PILOT PROJECT To determine the direction and focus of your pilot team design, begin by answering the following questions: What are the goals of this pilot project? What changes do we think are possible? How will we know change has occurred? Review the answers to these questions for internal consistency and revise as necessary. For example, the measurements should relate to the established goals. Once you have determined your goals, anticipated changes, and related measurements, use the Plan, Do, Study, Act (PDSA) quality improvement model to develop the pilot project design (include projected timeframes). A. Describe and Document the Plan Who is the Target Population? How will patients be approached and invited to participate in ACP? Who are the ACP team members and what roles do they have? What are the goals? What are the measurements? 175

182 B. Describe the Do When will the plan begin and end? What is the system for documenting observations and problems? Who is responsible for monitoring the implementation? C. Describe the Study How and when will the data be analyzed? Who will take responsibility? D. Describe the Act What changes need to be made (what was learned?) What are the recommended next steps? STEP 5: COMMUNICATE THE SUCCESS AND LESSONS FROM THE PILOT PROJECT How will the success be communicated and to whom? Who will take responsibility for dissemination? 176

183 APPENDIX 3: RESPECTING CHOICES PROCESS OUTCOMES MEASUREMENT TOOL Date: Organization: Person(s) completing data collection tool: PART I: ADVANCE CARE PLANNING/AD POLICY/PROCEDURE Directions: Review your organization s Advance Care Planning/AD Policy/Procedure to provide responses to each of the following questions. If the policy/procedure does not include the requested information, the appropriate response is NO. 1. ADs are reviewed by a qualified* person prior to entering the AD into the medical record. Yes No *qualified - a person who has been trained on the criteria for legal accuracy, completeness and clarity 2. ADs are stored in a consistent place in the medical/electronic record. Yes No 3. An existing AD (when available) is reviewed on admission with the patient for clarification and/or changes. Yes No 4. When a patient states he/she has an AD on admission, but it is not in the medical record, or available, an individual is assigned to locate the AD and bring it to the organization within 12 hours of admission. Yes No 5. ADs are transferred with the patient when he/she moves to another healthcare facility. Yes No 177

184 6. A multidisciplinary team of individuals responsible for advance care planning exists. Yes No 7. Individuals who have responsibility for advance care planning facilitation (e.g., ACP facilitators) receive a minimum of 14 hours of training (e.g., First Steps Facilitator Certification course). Yes No 8. Other staff (RN s, social workers, clergy, etc.) is given information on ACP and related responsibilities during new employee orientation. Yes No 9. A referral mechanism is available to access requests for qualified* ACP facilitation. Yes No *qualified - a person who has been trained on the criteria for legal accuracy, completeness, and clarity 178

185 APPENDIX 4: RESPECTING CHOICES OUTCOME MEASURES CHART AUDIT FORMS AD OUTCOME STUDY FOR MM/YYYY FOR (TARGET POPULATION) DEATHS 1. Gender: Male Female 2. Age: 3. AD: Yes No 4. Type (check all that apply) POAHC POLST Living Will Other 5. Was a copy of the AD in the patient s medical record at this organization? a. At admission Yes No b. At death Yes No 6. Type of patient preferences: a. Written in an AD CPR/No CPR request No treatment if severe, permanent neurological injury Other: b. Reported by healthcare agent and documented in chart CPR/No CPR request No treatment if severe, permanent neurological injury Other: 7. Written documentation of the following medical decisions: Recorded : # of days Decision before death followed a. No CPR Yes / No b. No feeding tube Yes / No c. No antibiotics Yes / No d. Other: Yes / No 179 Copyright 2011, Gundersen Health System Medical Foundation, Inc. NC SYSMan RC 001 v.5.13

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187 APPENDIX 5: PATIENT SATISFACTION SURVEY POST ACP DISCUSSION Please provide your level of satisfaction with the advance care planning discussion you just had. 1. I feel that this discussion was helpful to me (not at all) (very much) 2. I feel better prepared to make decisions about my future healthcare (not at all) (very much) 3. I feel the facilitator did a good job of with my needs for advance care planning (not at all) (very much) 4. Is there anything you think the facilitator could have done better to help? Please comment below if you have suggestions. 181

188 APPENDIX 6: SUGGESTED PHYSICIAN INTERVIEW ON ACP/ADS 1. Do you initiate conversations with your patients about advance care planning and completing ADs? YES a. Please estimate the percentage of patients you do this with? % b. Which patients do you initiate these conversations with? All Only seriously ill patients Only patients who express interest NO c. If you do not initiate, what are some of your reasons? 2. Given the time constraints of physicians in the clinic, please describe the kind of conversations you have with your patients relating to decisions for future medical care, including end-of-life treatment options. a. Would you be supportive of other professionals, such as care managers or advance care planning facilitators, taking the lead in this discussion and involving you as needed? (By taking the lead, we mean initiating ongoing discussions on end-of-life planning, not just exploring a patient s interest in completing an AD.) YES, for all patients YES, some patients NO b. If answered with anything besides Yes, for all patients, please cite some of your concerns. 182

189 3. Are you comfortable having these conversations about end-of-life care with patients? YES NO What aspects are you uncomfortable with? 4. Are you comfortable having these conversations about end-of-life care with families? YES NO What aspects are you uncomfortable with? 5. What opinions do you have about the current practice related to advance care planning and completing ADs? 6. What do you think would improve the quality and/or quantity of advance care planning discussions? 7. Is there anything that was not included in this survey on which would like to comment? Thank you! 183

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191 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Chapter 6 Sustaining Your ACP Program 185

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193 CHAPTER 6 SUSTAINING YOUR ACP PROGRAM Once your well designed ACP program and successful outcomes are emerging, you will need to develop strategies to sustain this momentum. Your ACP program will need ongoing support, and dissemination of new ACP practices affects gradual cultural change that takes a few years to fully achieve. Although positive signs of acceptance are evident from the beginning, the change that occurs impacts many aspects of patient care. People s views about life and death are challenged. Outdated and ineffective practices are discarded. Misunderstandings about end-of-life care and treatment decisions are clarified. Professionals will learn new skills and identify personal barriers to having effective ACP discussions. Healthcare organizational leaders reconsider what resources are required to improve ACP outcomes. You are making a significant investment in order to provide valuable ACP services to patients at various stages of health and illness. The initial successes realized need to be gradually integrated into the routines of care. This requires a plan for sustainability that yields rewards over time for patients, families, healthcare providers, and organizational leaders. This chapter begins by underscoring the challenges faced in sustaining an ACP initiative. Any quality program intended for system-wide implementation is affected by various factors that either accelerate or impede dissemination. We briefly review the principles underlying the social science diffusion of innovation theory with application to ACP practices. The key components in designing a plan for sustainability are be defined and explored, including the development of written standards of practice, ACP program coordination, addressing barriers to implementation, developing communication pathways, and the need for continuous quality improvement. DIFFUSION OF INNOVATION: THEORY AND STRATEGIES The processes by which novel programs are integrated into routine practice are fascinating. There are no simple answers. Unfortunately, worthwhile programs are often abandoned because plans were not made to sustain them. Change can be slow and painful. Social scientists have described the process through which new ideas are disseminated in a theory called the diffusion of innovation (Rogers, 2003), Rogers defines diffusion as the process in which an innovation is communicated through certain channels over time among the members of a social system. Key elements in the diffusion of innovation theory include the innovation itself, how it is communicated, time, and the social system affected by the innovation. 187

194 Rogers identifies a host of natural phases and features that occur with diffusion of innovation. We encourage you to review this rich body of research to gain insight as you develop your plans for sustainability (Rogers, 2003). For example, Rogers categorizes the phases of adoption of an innovation into five groups based on the normal bell-shaped distribution curve: innovators (2.5 percent); early adopters (13.5 percent); early majority (34 percent); late majority (34 percent), and the laggards (16 percent). Several features affect the rate of adoption, but once it reaches 10 to 20 percent, a critical mass is achieved, making it more likely that the change will disseminate effectively. Additionally, the role of champions in overcoming the natural resistance to change is a critical component of dissemination. Champions bring the important characteristics of informal leadership, communication and negotiation skills, influential style, critical thinking, and risk taking. Rogers also identifies five stages of the diffusion and innovation process: 1. agenda-setting (i.e., perceived need to change), 2. matching (i.e., recognition of a problem that needs innovation), 3. redefining/restructuring (i.e., modification of the innovation to the organization s culture), 4. clarifying (i.e., more clear definition of how the innovation relates to the organization), and 5. routinizing (i.e., integration of the innovation into routines of care). Of particular interest for this chapter are Stages 4 and 5. The clarifying stage occurs as the innovation is being integrated into the structure and function of the organization. When your ACP pilot projects have been completed and positive outcomes have been produced, more individuals will need to learn about the program and receive assistance in gradually accepting the change. While some may be uncertain how the change will affect them and how it will work on a larger scale, local champions and leaders can relieve the uncertainty of this stage. The stage of routinizing is similar to the concept of sustainability. Sustainability is the measure of how a new program continues to be implemented long after initial efforts are completed. The question of sustainability is commonly addressed only after a formal research study has been conducted. Will the organization adopt the research findings into clinical practice, or will it abandon the program once funding and research interventionists are gone? Respecting Choices faculty have witnessed the unfortunate consequences of not having a sustainability plan. Initially, passionate teams and trained facilitators are excited about implementing a quality ACP program and making a difference for patients and families. They invest enormous amounts of time and energy designing an ACP pilot project, organizing team meetings, and becoming certified as ACP facilitatore. They experience professional satisfaction and positive reception from patients and families. But without support to sustain this momentum, passion turns to frustration. Trained facilitators begin to lose their enthusiasm and facilitation skills. ACP practice reverts to meeting the minimum standards required by federal regulations or accreditation organizations. Sustaining the momentum of your initial ACP projects will require time, effort, and a well-conceived plan for dissemination. 188

195 Research has identified a number of factors associated with sustainability (Green, 1986; O'Loughlin, Paradis, Gray-Donald, & Renaud, 1999; Smith, Redican, & Olsen, 1992): the number of people who participate in the innovation, the degree to which the new program is individualized or modified as it is implemented, how well the program fits with the organization s mission and vision, the effectiveness of local champions, and the availability of data on the rate of adoption of the innovation. Sustainability demonstrates the need for a specific and effective plan to maintain momentum after the initial design and testing of your ACP program. Leadership is critical in the dissemination of new programs, and ineffective leaders can stall implementation forever (Crow, 2006). In reflecting on how diffusion of innovation concepts relate to best practices in healthcare, leaders must support the innovators and early adopters by testing the new practices. Leaders must lead by example, be willing to experience the impact of the new processes, and develop effective strategies to communicate the improvements. From the many teams who have implemented this comprehensive ACP program, Respecting Choices faculty have gained valuable insights on sustaining the momentum and hardwiring best practices into routines of care. The remainder of this chapter shares these lessons with you. KEY COMPONENTS IN DESIGNING A PLAN FOR SUSTAINABILITY In developing a plan to sustain your ACP momentum and effectively diffuse this innovation into the organization and community, we recommend that you consider the following key components: ACP oversight committee; development of standards of practice; role and responsibilities of the ACP coordinator; identification of barriers to implementation, as well as strategies to overcome those barriers; development of communication pathways; and continuous quality improvement. 189

196 THE ACP OVERSIGHT COMMITTEE Who will be responsible for managing the ACP program you have developed? We recommend that an ACP oversight committee with specific responsibilities be organized and strategically structured within the organization. The ACP oversight committee elevates your ACP program as part of organizational operations, similar to committees developed for resuscitation or infection control. When assembling the ACP oversight committee, consider the widespread impact of ACP practices throughout the multiple layers of the organization, patient care experiences, and professional roles and responsibilities. Suggestions for membership include: a senior administrative lead or executive sponsor; multidisciplinary involvement (e.g., physicians, nurses, social workers, chaplains, volunteers, clinicians); representation from a variety of departments (e.g., intensive care, emergency, outpatient, long-term care affiliations, clinics); quality improvement resource; marketing; and patient education. The function of the ACP oversight committee must be defined, beginning with a mission statement that reflects the ultimate goals it aims to achieve. The committee must work closely with the ACP coordinator (see pages ) to sustain the ACP system by (1)determining a realistic budget and cost center for growth and development, (2) designing ongoing quality improvement projects, (3) educating staff, and (4) approving standards of practice, among other activities. When aligning the ACP oversight committee within the hierarchy of the organization, a number of issues must be considered. To whom will the committee be accountable? Who will provide support for the work of the committee? How will it be financially supported? At Gundersen Health System, the ACP program falls under the lead ethics consultant (who is also founder of Respecting Choices). The ethics committee is a multidisciplinary group sensitive to the issues of informed consent, rights to forego medical treatment, and end-of-life decision-making issues and conflicts. The ACP coordinator, is also member of the ethics committee, as are key influential administrative leaders. While this model has been effective in our organization, you may need to consider other options. The key is to establish a permanent organizational structure to manage and improve your ACP program. 190

197 DEVELOPMENT OF ACP STANDARDS OF PRACTICE Once you have tested a variety of processes and materials in the design phase of your ACP microsystem, it will be necessary to develop written policies and procedures that hardwire best ACP practices into routines of care. Remember, an ACP microsystem is intended to organize a group of people to elicit, understand, document, and honor a patient s preferences for future medical care. A comprehensive ACP and AD policy and procedure should be written and include the categories listed below. These written guidelines will serve to distinguish merely the completion of ADs from the process of ACP communication and to define expectations of healthcare providers in delivering a consistent and reliable ACP service. As a guide, please refer to the Gundersen Health System ACP and AD policy and procedure in Appendix 1, page 211. Purpose statements. These statements are intended to describe the goal of the ACP program, which ultimately is aimed at communicating and honoring a patient s informed healthcare choices. Such statements may also reflect statutory or regulatory guidelines required for your organization or geographic area (e.g., how incapacity is determined). Definitions. It is important to clarify terminology, such as the difference between ACP and ADs. In the Gundersen Health System policy, for example, it clearly recognizes an AD as any written document (e.g., informal documents or notes entered by physicians about a patient s preferences) that represents the wishes and values of an adult, while acknowledging the value of creating a written plan that meets Wisconsin s statutory requirements for ADs. The role of the ACP facilitator is also recognized as a legitimate role with related responsibilities. We believe the acknowledgement of this role is an important standard for the ACP policy and procedure. Roles and responsibilities of team members. Consistent with the team approach to ACP, the roles and responsibilities for each team member need to be determined by each organization. Clear expectations for role performance will assist with orientation of employees and quality improvement monitoring. Entering, removing, and transferring ADs. Guidelines for communicating the written plan must be clear and include the process of and responsibility for reviewing documents prior to entry into the medical record. The importance of ongoing review of ADs and of the transfer of AD documents with the patient must also be stressed. Documentation expectations. ACP discussions should be documented in a consistent and reliable section of the medical record. This aids the recovery of important conversations and healthcare decisions made by the patient and improves the collaboration between ACP team members. ACP educational activities should also be recorded in a consistent manner. 191

198 THE ROLE OF THE ACP COORDINATOR Your ACP program will need ongoing organization and management. Designating one individual to fill the role of ACP program coordinator has several advantages. The coordinator manages multiple details of the ACP system. A description of the responsibilities the coordinator may assume follows. 1. Deployment of Human Resources. The ACP program coordinator will help organize the deployment of staff to deliver and maintain the ACP services you have designed. (This does not mean the coordinator will directly manage staff.) While some large organizations may need to create an entire ACP department, in most organizations, the coordinator helps determine how roles and responsibilities can be assigned to existing staff and volunteers. The coordinator, working with other managers, physicians, and community partners, helps determine the functions of the ACP program, who is best suited to meet the various planning needs of patients and families, and who can actually accomplish the work. For example, in the ambulatory setting, physicians are encouraged to initiate ACP conversations with patients, but they are typically unable to provide the depth of ACP facilitation most patients require. Who might do this work? There are a variety of options. Some departments may have a designated social worker, a referral may be made to a patient service representative in a clinic, or the work may be transferred to another place, such as the community hospital. Negotiating how these roles and responsibilities are integrated is the work of the coordinator. This coordination requires that roles be defined, that the competency of each team member be ensured, and that a mechanism for team collaboration be developed. The success of an ACP program depends upon the creation of a well-functioning ACP team. As the rate of requests for ACP facilitation increased in the hospital, we discovered that our chaplain facilitators were being stretched too thin and being asked to fulfill several ACP roles. For example, in order to reduce the pressure on our chaplain facilitators, nurses at the bedside were asked to fulfill patient requests for basic ACP information. This revised system required teaching new skills to the nurses and developing simple practices to ensure that needed educational materials were available in all units and departments. In this reorganized system, the patient received the service needed in an efficient way, the nursing staff was more involved with ACP, and the ACP facilitators could focus their energies on ACP discussions and clarification of information. The deployment of human resources to deliver a consistent and reliable ACP service is an ongoing challenge. As the program in La Crosse has succeeded and a growing number of patients have needed assistance, we have had to continually adjust the deployment of staff. In one of our hospitals, with an average of 250 patients per day, we once assisted only 8 to 10 patients per month. Now we average about four patients per day. To meet this increase in demand, we started to use a small number of highly qualified volunteers (e.g., retired RNs) who 192

199 work closely with pastoral care staff. The balance between having enough skilled people to meet the demand without overburdening any one group or individual must be maintained. 2. Creating and Maintaining an ACP Team Referral System. When the roles and responsibilities of each member of the ACP team have been defined, an effective referral system must be established to optimize service to patients and families. Where and how will referrals to ACP facilitators be sent? Who will be responsible for triaging requests for an ACP facilitator to the most qualified person? And once developed, the effectiveness of the referral system will need to be monitored by the ACP coordinator. 3. Educating Staff and the Community. The ACP coordinator must oversee the ongoing education and training of staff. What level of ACP education is needed by staff, and how will this be provided? The ACP coordinator works with the certified ACP instructors to schedule, organize, and deliver the First Steps Facilitator Certification course required for those responsible for providing individualized ACP facilitation. Education must extend beyond the training of ACP facilitators. The ACP coordinator takes responsibility for providing ACP information during employee orientation on a continuous basis. This is necessary to ensure that all staff become familiar with the ACP program in your organization, have access to patient educational materials and resources, and understand how to make an ACP referral. A variety of strategies to educate staff in ACP are provided in Chapter 3. The ACP coordinator can use many of these strategies to develop an ongoing plan for dissemination of ACP. Additionally, ACP coordinators must keep abreast of changes in state or regional laws, standards (e.g., The Joint Commission), and regulations that relate to the work of ACP. These changes will need to be integrated into existing standards of care and practices, and staff educated accordingly. As discussed in Chapter 4, a variety of activities may be employed to disseminate the concept of ACP to the community at large. The ACP coordinator can develop a yearly plan for community engagement and marketing the importance of ACP to a wide audience. This plan can include developing partnerships with community leaders, targeted community educational strategies, and reaching out to diverse communities. 4. Conducting Quality Improvement Activities. Measuring and monitoring the effectiveness of the ACP systems you have created will be an ongoing responsibility. The ACP coordinator can establish an annual improvement plan, assist with data collection, and provide progress reports to the ACP oversight committee. These annual plans typically are focused evaluations identifying a few selected issues for improvement. When designed on a continual basis, however, they assist with steady progress and development of an ACP program. The ACP coordinator is also a key contact when an error or problem with the existing ACP system is identified. The coordinator can work closely with the ethics committee in gathering 193

200 information and developing strategies to correct the immediate problem and attempt to prevent its recurrence. For example, if a situation arises where a patient s ACP plan was not followed (e.g., CPR preference was not documented), this error would be communicated to the ACP coordinator, who would work in concert with the ethics committee to determine why the patient s preference was not honored and to develop strategies to prevent this error from happening again (e.g., staff education or change in the written CPR policy). 5. Assisting with Development and Implementation of Organizational Systems that Support ACP Goals. As discussed in Chapter 2, several key systems will ensure that your ACP program is effective in honoring patients informed healthcare decisions. These key systems include the AD document, the medical records storage and retrieval system, and the ACP team and referral mechanisms. These systems will need ongoing monitoring for effectiveness and periodic redesign. For example, creating a medical records storage and retrieval system will be challenging, yet essential, if the patient s documented preferences are to be accessible to physicians and other healthcare providers when needed. In the initial stages of ACP development at Gundersen Health System, we used a bright green plastic sleeve to store the patient s AD in his/her paper medical record. The green sleeve was placed in the front of the patient s paper medical record and moved to the patient s unit record on admission to the hospital, making it readily available for the attending physician and others to review as needed. When the patient was transferred to another healthcare facility, the contents of the green sleeve were copied and sent with other important medical information required for continuity of care. More recently, Gundersen Health System replaced paper with an electronic medical record (EMR) system, rendering the paper storage and retrieval system obsolete. The ACP coordinator was instrumental in helping test the newly designed EMR ACP application and in teaching staff to apply ACP principles effectively. 6. Maintaining ACP Materials. The ACP coordinator will be responsible for developing a plan for the distribution and maintenance of ACP patient educational materials. Where will these materials be stored? Who will have access to these supplies? How will they be distributed and available for staff? Who will maintain supplies? How will revisions to these materials be completed and communicated? Developing a plan for how these questions will be answered will ensure that ACP materials are available and updated as needed. ACP coordinators may also create standard ACP community presentations and materials that others can use when conducting educational programs. This standard package could include a cover letter from the coordinator with directions for contacting qualified facilitators when more individualized ACP assistance is needed. 194

201 7. Providing ACP Consultation. ACP facilitators and other staff will frequently have complex questions about ACP or ADs questions that require the expertise of the ACP coordinator. Having this ready resource is a great benefit to the program and helps ensure that uniform knowledge and skills are maintained throughout the organization as new problems are encountered. Issues that recur can be investigated to determine if changes in routine practices are required. These are a few of the common roles and responsibilities assumed by the ACP coordinator. A sample position description is in Appendix 2, page 217. This person becomes a familiar and reliable resource for a host of ACP issues that will emerge. IDENTIFYING AND OVERCOMING BARRIERS TO IMPLEMENTATION When implementing a comprehensive ACP program, you will encounter barriers. Some barriers may be unique to your organization and community; all will need your attention. We encourage you to expect and anticipate such barriers in the beginning of your ACP initiative and throughout its maturation. Consider them growing pains a natural consequence of effective dissemination. Barrier #1: The literature shows that ADs don t work, so why invest more resources? The claim that the current approaches to ADs don t work is accurate. As described in Chapter 3, ample evidence exists of the failure of past AD efforts. The incidence of AD completion remains low, especially for those with serious chronic illness (Bravo, Dubois, & Paquet, 2003; Hickman, Hammes, Moss, & Tolle, 2005; Jennings, 2005). When written ADs are created, they are often not accessible, and many physicians and healthcare agents are unaware of their existence (Kass-Bartelmes, Hughes, Rutherford, & Boches, 2003). Moreover, even when plans are available, they are often not helpful to guide clinical decision making because chosen healthcare agents are unprepared or instructions are too vague (Fagerlin, Ditto, Danks, Houts, & Smucker, 2001; Fagerlin & Schneider, 2004; Lorenz et al., 2004; Shalowitz, Garrett-Mayer, & Wendler, 2006). These disappointing outcomes are the result of ineffective processes that focus on the creation of statutory forms, required disclosures, and a just-get-it-done mentality. Most studies on the effectiveness of ADs have narrowly focused on the outcome of document completion alone (e.g., living wills) rather than on the effectiveness of facilitated ACP discussions (Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007). It is often difficult to convince skeptics to re-invest in new and improved ACP strategies. To address this barrier, it is important to first acknowledge the failures of past AD efforts and why they have occurred. Simply getting adults to sign standardized, statutory and legal documents was a poorly conceived plan. (See Chapter 3 for a review of the literature on the failures of AD activities.) Why would we think this simple act would be effective? Making end-of-life decisions is a much more complicated process. Standard legal AD documents are typically not useful to guide clinical decision making. When documents are simply completed and signed, they are not fully understood by individuals, their families, 195

202 or healthcare providers. As a consequence, patients and their families are unprepared to make informed decisions about their medical care. Understanding why the typical approach to ADs has failed will help address this barrier. Describing how and why the Respecting Choices approach is different from past AD approaches can help pave a path to success. The purpose of an ACP program will need to be re-conceptualized to encompass a more comprehensive process of communication that helps patients make informed healthcare decisions based on their goals and values, communicate their plan to family and healthcare providers, and receive care that is consistent with these decisions. These patient-centered goals are universally valued by healthcare providers, but new processes, tools, and strategies will be required to attain these goals. In La Crosse, physicians are, at times, critical of the value of the advance care plans that are created. As one physician said, I don t think those documents really help. I still have to talk to my patients. This is true, of course, but not a sign of failure. Written plans will never replace the need for ongoing communication and assistance in the decision-making process. However, a well-developed ACP program will prepare the patient and family for those conversations that lead to making more timely and satisfying end-of-life decisions. Well-conceived plans stimulate ongoing discussions, helping patients and healthcare agents make decisions based on changing goals and values. As one Gundersen Health System critical care physician told Atul Gwanda in an interview for The New Yorker, These things are not laid out in stone. But, instead of having the discussion when they get to the I.C.U., we find many times it has already taken place (2010). Barrier #2: Our professionals don t have time to have lengthy conversations with patients. Acquiring the skill and finding the time it takes to have quality ACP discussions can be overwhelming for busy healthcare providers struggling with workload responsibilities. This is true for physicians, nurses, social workers, and chaplains. Many will be unable to envision adding another major role to their patient care responsibilities. For some providers, the lack of reimbursement for having such conversations will be an added barrier. These reactions are justified and will require a different approach to meeting the ACP needs of patients an approach that has professionals working together as a team with delegated roles and responsibilities. The team approach to delivering ACP services is the only practical and realistic option for providing a consistent and reliable service. The team approach offers the following advantages: divides the responsibilities for ACP among several healthcare providers, easing the burden for everyone and increasing the likelihood that ACP will be initiated; increases the availability of ACP to patients whether they are in the hospital, clinic, or community; exposes patients to a variety of qualified ACP facilitators, rather than relying on one healthcare provider; 196

203 increases the ability to hand off ACP to another qualified person when time permits only a short discussion; through proactive ACP, decreases crisis decision making at the bedside, which consumes hours of professional time and heaps a heavy burden on unprepared healthcare agents; and allows ACP to be completed over time, rather than in a single session. Once the ACP team is identified and roles defined, ACP facilitation skills training programs can give team members the confidence to (a) facilitate ACP discussions with patients and their families, (b) prioritize conversations based on the current needs of the patient and the situation, (c) trust other team members to assist the patient and make referrals as needed, and (d) slowly integrate these skills into their practice over time. One of the goals of ACP pilot projects is to monitor the time each professional is spending on their assigned role and to assess the impact the new ACP responsibilities may have on workload priorities. During this pilot phase, facilitators are asked to complete a small number of ACP sessions to gradually assess the impact on their responsibilities and gain a better appreciation of the ACP workload demand. Barrier #3: The community will think we are promoting ACP to decrease healthcare costs. It is important to think about the reactions that may emerge in your community and be prepared to openly listen to and understand these concerns. Some people may have the impression that ACP conversations are intended to dissuade them from receiving aggressive care to limit end-of-life treatment. Religious groups may have moral concerns about not providing certain life-sustaining treatments, such as artificial nutrition and hydration. Some attorneys may believe your ACP efforts are an attempt to take business away from them. These types of reactions may stem from past experiences with the healthcare system, misinformation from national media (e.g., death panels ), or insensitive discussions about treatment choices from busy healthcare providers. Being prepared for and sensitive to such reactions can go a long way in helping concerned individuals understand the mission of an effective ACP program. Developing consistent community education messages and programs that are delivered by qualified presenters can begin to dispel misunderstanding. ACP educators must examine their own values and beliefs to understand how they may communicate bias and value judgments that are offensive to some and unhelpful to others. In La Crosse, we respond simply and consistently to concerns about the goals of our ACP program: We attempt to help all adults create a plan that reflects their values and goals in an informed way. We want to make sure that we provide the best and right care for each person. The cost of care, our own moral beliefs about life-sustaining treatment, and the decisions made are not important factors in our program. Ultimately, if a program can live up to this description, concerns will fade. It is important to deliver consistent messages about the purpose of ACP, which is to assist individuals in making informed healthcare choices through understanding, reflection, discussion, and formulation of a plan. If that plan 197

204 includes provisions for a feeding tube to sustain life when neurological recovery seems impossible and it reflects the person s values, it is a successful plan. It is also important for staff to know how and when to implement ADs. If documents are ignored or misused to limit treatment, it won t take long for mistrust to spread in the community. Barrier #4: We cannot afford such a comprehensive ACP program. A comprehensive ACP program undoubtedly has associated costs. Educational materials must be created or purchased, staff will require training related to their roles and responsibilities, an AD document storage and retrieval system will need to be developed, and ACP facilitators will need time to provide qualified assistance to patients and families. The ACP program needs coordination and management. These costs can lead to strong opposition to investing in a comprehensive ACP program. The following perspectives may help you counter such opposition: Most organizations already devote some resources to AD activities. It is helpful to examine what resources are being used and how they could be revised, replaced, or re-deployed within a new program. For example, with a team approach, the work of ACP can be distributed among existing staff who are already trained to have a role in ACP for all patients. Current materials used for patient education can be assessed for their effectiveness. Often, money is being spent on materials that add little value to patient care. Attempt to describe the current costs of crisis management when a patient s end-oflife preferences are not known, creating family and staff conflict. It is common for organizations to report frequent and time-consuming family and team conferences involving multiple staff resources. Prior to full implementation of the Respecting Choices ACP program at Gundersen Health System, such conferences were frequent, but they have diminished dramatically over the years. Today, when crisis management conferences are convened, staff asks, What went wrong with ACP? and How did we fail this family? Gather current data on utilization of resources such as length of stay in the ICU, hospice length of stay, and use of life-sustaining technology in the last two years of life. As discussed in Chapter 5, the Dartmouth Atlas ( is a source for this information for Medicare patients. Gundersen Health System has experienced significant changes in the use of these resources for this patient population. For example, the rate of resuscitations significantly dropped from 1988 to 2008, accompanied by improved survival outcomes for those who were resuscitated & & P Value CPR attempts CPR attempts per 1000 admissions p = Alive at discharge after CPR attempt 12% 22% 33% p =

205 While enhanced ACP practices alone do not account for these improved CPR outcomes, they are contributing factors. CPR discussions are more routine and included in conversations with both healthy and ill patients. Effective ACP (more than simply getting people to sign legal documents) may improve the quality of end-of-life care by matching treatment provided with patient s informed decisions, thereby decreasing the utilization of acute care resources in the last two years of life. Although La Crosse ACP program expenses were not tracked, one estimate puts the cost at approximately $500,000 for all work in the whole community over the first three years of design and implementation. This includes the cost of materials, staff training time, management and administration, ACP facilitation, and medical record storage and retrieval. As mentioned earlier, your community may already be spending money on ineffective programs money that could be devoted to your ACP program. In the La Crosse AD Study (LADS I) (Hammes & Rooney, 1998), we found that decedents with written ADs were significantly less likely to die in the hospital and had a lower (approximately $2,000 less) median cost for hospital and physician charges in the last six months of life than decedents without written ADs had. While the number of decedents included in LADS I was relatively small (540 adults), and while the difference in hospital and physician charges between decedents with and without written ADs did not quite reach statistical significance, findings do suggest that in a large population a modest cost savings may be realized by effective ACP. If our estimate is accurate, we reduced hospital and physician costs by $918,000 in the last six months of life. Even if the median savings of those with an AD were only $1000, the program in La Crosse would be about cost neutral ($459,000 in savings vs. $500,000 in expense for the program). The cost data from the LADS I study are consistent with those from other studies that evaluated the impact of improved AD systems on the utilization of health services in the last months of life. Emanual (1996) concludes in his review of the literature that the use of an AD and hospice can reduce the cost of healthcare in the last six months of life by 10 to 17 percent. Molloy s (2000) prospective, randomized trial studying a systematic ACP program in long-term care facilities found a cost savings of $1750 (Canada CA) per resident. Clearly such savings will neither solve the national problem of rising healthcare costs nor dramatically improve the margin for any organization. The fact that ADs will not bring an economic windfall is probably a good thing for public confidence. What these results do suggest, however, is that effective ACP can improve the quality of endof-life care without increasing its cost. In short, while it is true that a good ACP program requires resources, the associated costs are offset by reduced utilization of resources in the last days of life. It is important to recognize the value of an effective ACP program on patient and family satisfaction with care. There is a rising expectation to improve the dying experience. The news media, national foundations, and many professional groups have set a national agenda to improve end-of-life care. Patients and families are becoming increasingly aware of what they expect from end-of-life care. Emerging evidence reveals important information about the impact of ACP on patient experiences. In an Australian randomized, controlled trial evaluating the impact of the La Crosse model of ACP facilitation on hospitalized patients over the age of 80 years, patient satisfaction with hospital care was measured at discharge. In the intervention group, 93 percent of patients (N=133) were very satisfied with their overall care versus 65 percent in the 199

206 control group (Detering, Hancock, Reade, & Silvester, 2010). Another study that investigated the impact of end-of-life discussions on patients with advanced cancer found a significant association between such discussions on quality of life and improved bereavement adjustment (Wright et al., 2008). Organizations that are able to meet expectations for improving such end-of-life outcomes are likely to be viewed on the cutting edge, to have fewer patient or family complaints, to decrease unnecessary stress on staff, and to avoid potential legal liability (e.g., successfully prolonging life against the known preferences of the patient). From these perspectives, how can an organization or community afford not to improve its ACP efforts? How does an organization measure the value of an improved ACP program relating to job satisfaction among its healthcare providers? End-of-life conflicts and poor communication can leave their mark on healthcare providers who experience varying levels of moral distress, a state of physical, emotional, and psychological imbalance when a person knows what to do, but is unable to act upon these beliefs (Romesberg, 2003; Rushton, 2006). Research on the impact of moral distress on healthcare providers reveals a host of responses, including physical (e.g., headaches, muscle aches, stomach pains); emotional (e.g., anger, guilt, depression), and environmental (e.g., powerlessness, job dissatisfaction, turnover) (Catlin et al., 2008; V. Kain, Gardner, & Yates, 2009; V. J. Kain, 2007; Schluter, Winch, Holzhauser, & Henderson, 2008). Not surprisingly, one of the most common causes of moral distress among healthcare providers is disagreement about a dying person s care, actions that promote suffering, and physicians who are evasive and avoid direct communication with patients and families (Beckstrand & Kirchhoff, 2005). Respecting Choices has received many positive testimonials from staff trained in the skills of ACP facilitation concerning the impact of improved ACP practices on patient advocacy. One study examined the impact of the Respecting Choices facilitation skills training on nurses roles as patient advocates. Compared with nurses who did not receive the training, those who did felt more prepared to assist patients with making informed decisions, better able to uphold their patient s wishes, and more satisfied with their ability to deliver appropriate end-of-life care (Seal, 2007). The impact of improved communication pathways between families and healthcare providers has been documented by other researchers (Ahrens, Yancey, & Kollef, 2003; Detering et al., 2010). Barrier #5: We are a cutting-edge, high-tech medical center. We don t want to create the image that we are promoting death and dying. All healthcare organizations need to be concerned about their community image. It is often more interesting and exciting to portray the organization s commitment to the most advanced lifesaving technology and scientific advancements than it is to portray a commitment to good end-of-life care. We have found that this tends to represent more of a marketing challenge than a lack of community interest. You may want to consider some test marketing in your community to assess its understanding of and interest in ACP services. Most people are realistic and realize that patients die, even with the latest technology. When that time comes, patients and family want to know not only that they will receive good care but also that their values will be respected. 200

207 Importantly, when communicating our ACP efforts, our focus has been on personalized care and respect of individual and family values and goals when complex decisions must be made. When marketing ACP in the La Crosse community, we find that people are impressed and supportive of our efforts to help them understand their healthcare choices, to communicate with them openly and honestly, and to honor the decisions they make. The Respecting Choices approach is patient centered, with a focus on helping patients live well at all stages of life, including the last months, weeks, and days. This message resonates with all communities and helps them view the medical system as humane and caring, rather than as death promoting. Health systems should be proud to say that they provide the best personalized care at all stages of health and illness. Barrier #6: The collaboration that occurred in La Crosse is not possible in many settings. The collaboration that has occurred among leaders of the La Crosse healthcare organizations surrounding the development and dissemination of ACP practices has significantly contributed to the program s initial, as well as its ongoing, success. This collaboration was possible for a variety of reasons. In La Crosse, healthcare services are dominated by two not-for-profit integrated health systems. Once the leaders of these organizations understood the mission of an ACP program and reached agreement on community standards of practice, dissemination was more easily accomplished. Each organization assigned internal resources to work on the ACP initiative and provided leadership support for the development of community partnerships. ACP simply became the right thing to do, and patients and families have now come to expect this service. Once it was clear that the two competing health systems were working together on this effort, it was possible for all other institutions public, private, and religious to join the effort. In this way, the work became true community collaboration. While such collaboration may present unique challenges in larger and more complex healthcare systems, more diverse populations, more competitive markets, and metropolitan areas, it is still possible to establish common standards of care. For example, Advance Cardiac Life Support (ACLS) and drug allergy systems are standards of practice that have been universally implemented in communities and healthcare systems both large and small. Everyone benefits from such collaboration: patient safety is ensured, outcomes are improved, and healthcare providers receive standardized education and training, among other benefits. Competing healthcare organizations might be interested in a collaborative approach to designing an ACP program for a variety of reasons: The costs of implementing and maintaining an ACP system can be shared. Uniform community-wide standards of practice can be established. Continuity of care is enhanced as patients move from one healthcare organization to another. The health of the community at large becomes a common objective. 201

208 Despite these benefits, it may be difficult for some geographic areas to collaborate if working relationships are strained and organizational leaders do not appreciate the value of working together. Effective leadership is required to bring key stakeholders together and agree upon a common mission for a community-wide ACP program. Respecting Choices faculty have assisted multiple large and small communities to understand the value in such collaboration and create effective strategies to individualize the success achieved in La Crosse. One such success story is Honoring Choices Minnesota. a replication of the Respecting Choices ACP model in the Twin Cities under the direction of the Twin Cities Medical Society. Members of over 40 area organizations convened to learn about the proposed ACP model and to determine their willingness and commitment to collaboration. Over time, senior leadership of every metro area health system endorsed the program. They agreed not to compete in the area of ACP, to collaborate in development of shared materials, and to devote necessary resources. To date, they have created a common AD document, an approach to community and patient education, and shared ACP facilitation skills training programs. The Twin Cities ACP initiative continues to grow and expand its reach through effective leadership and collaboration. Barrier #8: Patients are not interested in having ACP or end-of-life discussions. This is a myth often perpetuated by healthcare providers and family members. With a new approach to ACP, this significant barrier lessens over time. A cultural shift in professional attitudes and competency takes time. Research on the value of end-of-life conversations paints a very different picture than most healthcare providers envision. While patients may reject the suggestion that they complete an AD document, they (1) want to be informed, (2) gain significant benefit from ACP activities, and (3) desire information about benefits and burdens of life-sustaining treatment (Davison & Simpson, 2006; Fried & Bradley, 2003; Guadagnoli & Ward, 1998; Kirchhoff, Hammes, Kehl, Briggs, & Brown, 2010; Tilden, Tolle, Nelson, & Fields, 2001). The benefits patients identify from ACP discussions include achieving a sense of control, strengthening relationships, relieving the decision-making burden on loved ones, and providing opportunities to work on life closure. Although this perceived barrier is not supported by the literature or by clinical experience, it is important to listen to the fears that underlie this assumption. It is also important to recognize that some patients, regardless of how they are approached to participate in ACP, may not be ready to accept the initial invitation; some may never be ready. Our experience has demonstrated that when patients are routinely invited into this conversation, provided an explanation of how ACP will benefit them personally, and offered competent assistance prior to a medical crisis, most will accept the invitation to actively participate in ACP. Additionally, to overcome this barrier we must recognize that professionals have had little training in the skills of effective ACP communication. When new facilitation skills are learned and a sense of mastery of ACP discussions is gained, professionals realize the value of ACP for patients and families. 202

209 Barrier #9: We are already doing a good job of getting ADs completed. In many organizations, the belief exists that their current AD program is sufficient that the outcomes being achieved (i.e., the completion of documents) are adequate and meet regulatory expectations (e.g., the PSDA). Additionally, individuals doing this AD work may feel threatened or concerned about involvement from others or added responsibilities. They may resist change if it suggests that the work they have been doing is wrong or ineffective. Or, they may feel that their value to the organization is being questioned and that their position is in jeopardy. Countering this tendency is difficult. People who are motivated by meeting only the minimum AD requirements will not be easily convinced that change is needed. An effective strategy we have observed is to connect the outcomes of a quality ACP program with the organization s mission of providing patient-centered care, evidence-based practices, satisfaction with the healthcare experience, or other similar such overarching goals. Organizations and communities that adopt a comprehensive ACP program realize that it is the right thing to do for overall patient care and satisfaction with the healthcare experience. When implementing new ACP practices, it is important to include those individuals who are currently doing this work in the development and dissemination phases. Listen to their fears, concerns, and perspectives. Acknowledge the positive outcomes they have achieved, and engage them in understanding the improvements that are possible. Once these individuals experience the advantages of the new approach, the added facilitation skills gained, and the impact on patient care, they often become influential in helping change attitudes and overcome resistance. Barrier #10: Why invest in planning when patients or families change their minds, or plans that are created are ignored? Skeptics who oppose changing current ACP practices will cite many examples of why they believe your ACP efforts will fail. They have experienced real consequences of a broken ACP system a system of gaps and ineffective processes: Planning is impossible. People change their minds, so why should we spend the time creating documents that won t make a difference? Our physicians don t even look for the ADs, so why bother? I see families override decisions patients have made and no one objects. These objections often stem from a history of disappointing experiences and disillusionment. These experiences will begin to change when a more effective ACP system is designed and a more comprehensive vision for ACP is created. The shift from current practice (e.g., completion of documents) to a patient-centered process of ongoing communication (e.g., ACP) will take time. The ultimate goal of your ACP program is to provide assistance in making informed healthcare choices that will be understood by those who need to know and honored when appropriate. The common focus on document completion will need to be abandoned in favor of learning how to have quality ACP 203

210 discussions. When ACP is understood as a staged process (i.e., First Steps, Next Steps, and Last Steps) that is integrated as a routine of care (rather than as a one-time event of completing an AD), it becomes more apparent that it is necessary to revisit patients goals and values as they experience chronic, progressive illness. Additionally, organizational leaders will need to take responsibility for establishing conflict resolution mechanisms and standards that honor patients well-conceived written advance care plans. The consequences of inaction can promote a culture of complacency. For example, during a Respecting Choices ACP consultation, we were presented with many examples in which patients decisions were ignored, overturned, and disregarded. Little follow-up had been done to give feedback to those involved or to discover the rationale for not honoring patient preferences. Even the ethics committee representatives felt powerless to intervene because they lacked support from the administration. This is not a failure of ADs; it is a failure to foster a responsive and ethical environment to support patients informed choices. Organizational leaders needed assistance in understanding that patient rights were being violated, recognizing the legal liability to which they were exposing their organization by continuing to ignore these events, and establishing pathways for resolution of future issues. At Gundersen Health System, this concern is currently reflected in the peer review process. As hospital deaths are evaluated, each patient s AD is reviewed to assess the integration of the person s previously expressed decisions into their medical care. If this review reveals possible discrepancies between the AD and care provided, the attending physician is asked to provide more information and justification for the medical decisions. These are a few of the common barriers you may encounter as you disseminate new ACP practices throughout the healthcare community. Other barriers unique to your culture and environment will arise. Recognize them as a normal component of dissemination of your ACP program, and address them as soon as possible. Over time, the positive response from patients, families, and healthcare providers will override most barriers that develop. DEVELOPING COMMUNICATION PATHWAYS Chapter 4 describes the importance of developing marketing and communication strategies for community engagement and education. The messages that are created make a difference in motivating individuals to participate in ACP. Development of effective communication pathways will be important in your plans to disseminate the ACP microsystem you have developed, to diffuse the innovation you have created (Rogers, 2003). What are the most effective communication pathways in your organization? How can you access them for consistent spread of information? Rogers (2003) identifies several reasons why it is important to determine the methods you will use for communication: 204

211 The goal in designing communication pathways is to achieve a critical mass, that is, the point at which enough individuals have adopted the change that further dissemination becomes self-sustaining. To achieve this critical mass, target your communication pathways to those groups in the organization who are highly respected, are opinion leaders, and are likely to be receptive to the innovation. Consider providing incentives for adoption of the innovation. Use existing networks that link individuals and groups. Evaluate the use of peer networks to overcome resistance from those who lag behind in accepting the innovation. In developing effective communication pathways to sustain the ACP momentum you have created and move closer to hardwiring your ACP microsystem into the routines of care, consider the unique characteristics of your organizational structure and function and choose the approaches you have found to be effective for other programs you have disseminated. 1. Use your ACP champions to engage their peers. These local champions are typically highly respected opinion leaders with great communication skills and leadership influence. Champions may need to be developed for different professional groups (e.g., physicians, nurses, social workers), administration (vice presidents, quality improvement), community groups (e.g., faith communities, senior centers), and others. 2. Collect case examples and stories of the impact of ACP facilitation on the lives of the patients and families served in your community or organization. How did ACP make a difference in healthcare decision making? How satisfied were patients after receiving ACP assistance? What impact did a well-constructed advance care plan have on clinical decision making for physicians or other healthcare providers? How has ACP facilitation affected professional role satisfaction? The lessons learned from the clinical experiences within your organization or community can have a powerful impact on people s willingness to adopt to innovation. 3. Use existing technology available at your organization (e.g., group listserv, intranet, webcasts, webinars) to reach a large number of individuals. 4. Provide presentations through grand rounds, staff forums, and other regularly scheduled meetings. 5. Assign ACP mentors to various units or departments to serve as local experts as staff begins to integrate the newly designed ACP processes and materials. 6. Provide regular reports and updates on ACP stories and successes to administrative groups, medical, nursing, and allied health departments, and foundation boards, among others. 7. Write stories and case examples for organization newsletters and board reports. 205

212 QUALITY IMPROVEMENT As discussed in Chapter 5, ongoing quality improvement is a key element in designing an effective ACP program. It is also a key strategy in sustaining your ACP initiative. There is always an ACP process that needs to be monitored or new strategy that needs to be tested. We recommend that you select at least one ACP quality improvement project per year to demonstrate the need for vigilance in maintaining the ACP standards you have created and the commitment to ongoing quality. The data and lessons gleaned from such quality improvement projects can motivate people to change behaviors, celebrate successes, and raise expectations for what can be attained. The Respecting Choices program has achieved a high level of success due to a commitment to continually improve the ACP microsystem. Constant improvement over time leads to a highly reliable system that achieves consistent and desired outcomes. SUMMARY The ACP program you have designed will require ongoing support, improvement, and nurturing. To sustain it, a specific and thorough plan for dissemination will need to be created. There are no simple answers to ensure that ACP practices are embedded throughout the healthcare organization, hardwired into practice, and available to all patients and families as needed. Several key components will need to be included in your dissemination plan in order to establish your ACP program as a legitimate and worthwhile service requiring a significant investment of human and financial resources, time, and accountability within the organization. Over time, this investment will yield multiple rewards. Healthcare providers will work as a team in facilitating ACP conversations to assist patients and families in making timely, informed, and individualized healthcare decisions. Healthcare providers and families will understand patients choices and experience fewer decision-making burdens when the need arises. Patient care will be consistent with these decisions. Patient-centered care and advocacy will be supported. Most importantly, patients and families will experience a compassionate and skilled ACP team of professionals dedicated to creating a satisfying end-of-life experience that honors patients informed healthcare choices. The end result is an ACP program that any healthcare organization would be proud to support. 206

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215 B UILDING A SYSTEMS A P P ROACH TO A D V A N C E CARE PLANNIN G Chapter 6 Appendices 209