Nurse Executives Perceptions of End-of-Life Care Provided in Hospitals

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1 Vol. 45 No. 2 February 2013 Journal of Pain and Symptom Management 235 Original Article Nurse Executives Perceptions of End-of-Life Care Provided in Hospitals Kimberly K. Garner, MD, JD, MPH, Julia A. Goodwin, PhD, RN, Jean C. McSweeney, PhD, RN, and JoAnn E. Kirchner, MD Geriatric Research, Education and Clinical Center (K.K.G.), and Veteran Affairs Mental Health Quality Enhancement Research Initiative (J.E.K.), Central Arkansas Veterans Healthcare System, Little Rock; and Department of Geriatrics (K.K.G.), College of Nursing (J.A.G., J.C.M.), Department of Psychiatry (J.E.K.), and College of Public Health (J.E.K.), University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA Abstract Context. With the aging of our population, almost one in five adults, or 19% of the population, will be older than 65 years by Many persons have expressed concern about the inadequate preparation of hospitals to provide high-value endof-life care for the current and anticipated population of older adults. Objectives. The purpose of this study was to explore the perceptions of nurse executives about the provision of end-of-life care in the hospital setting. Methods. We conducted a pilot, descriptive, naturalistic, qualitative study using in-person interviews to capture nurse executives understandings, beliefs, and perceptions of end-of-life care in their facilities. Results. Data were collected from 10 nurse executives. We identified five major factors, three barriers and two facilitators, in their descriptions of provision of end-of-life care provided in the hospital: 1) communication inadequacies, 2) education inadequacies, 3) hospital system constraints, 4) hospice services availability, and 5) nurse executive advocacy. Conclusion. These findings highlight the need for interventions that focus on improving communication at the bedside and in transitions of care, enhancing educational interventions, and developing patient-centered care systems, which translate into a higher quality end-of-life experience for patients and their family members. Nurse executives are currently an underused resource in end-of-life care but are poised to be able to champion innovative models and a culture of change that integrates high-value care for patients with serious and chronic illnesses. J Pain Symptom Manage 2013;45:235e243. Published by Elsevier Inc. on behalf of U.S. Cancer Pain Relief Committee. Key Words End of life, hospital, nurse, executive, perceptions, communication, constraints, hospice, education Address correspondence to: Kimberly K. Garner, MD, JD, MPH, Department of Geriatrics, Geriatric Research, Education and Clinical Center, Central Arkansas Veterans Healthcare System, 2200 Fort Roots Drive, Published by Elsevier Inc. on behalf of U.S. Cancer Pain Relief Committee. 3J/NLR, North Little Rock, AR 72214, USA. kimberly.garner@va.gov Accepted for publication: February 20, /$ - see front matter

2 236 Garner et al. Vol. 45 No. 2 February 2013 Introduction Concern has been raised over the preparation of hospitals to provide high-value end-oflife care for the current and anticipated population of older adults. 1e6 Government statistics estimate that by the year 2030, almost one in five adults will be older than 65 years. 7 As people age, they typically develop one or more chronic illnesses. These chronically ill patients often have uncertain prognoses and poorly predictable disease trajectories. 8e10 Our current health care system is acute and episodic based and frequently fails to address the needs of patients with serious chronic illnesses. 5,11 Many patients require care beyond that provided by physician office visits and home health services, resulting in frequent hospitalizations and longterm care. 12 A report by the Institute of Medicine indicated that approximately 90% of patients wish to end their lives comfortably at home, surrounded by family and friends. 13e16 However, the reality is that approximately 56% of adults die in acute care hospitals 17 and 19% die in long-term care facilities, with many receiving aggressive medical treatments by default up to the point of death. 17e21 Thus, many do not achieve their wish to end their lives in the manner and place of their choice. There are major barriers to providing effective end-of-life care, including (1) lack of communication among health care providers, patients, and families; (2) a focus on cure and technology; and (3) unrealistic patient and family expectations. 22e24 However, very little is known about a key stakeholder group, nurse executives, who assist in setting policies that affect the provision of end-of-life care in the acute care settings. A recent series of studies concluded that A proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care, and improved end-of-life care will require strategic planning, community education, and evaluation of policies and procedures. 25,26 Nurse executives are key to this issue because of their considerable administrative knowledge, clinical experience, and authority to effect change 27 in the hospital setting. However, despite the extensive medical and nursing literature on end-of-life care, little is known about nurse executives perceptions of the provision of end-of-life care in hospitals. This study, therefore, explored the views of nurse executives about the provision of end-of-life care in the hospital setting. Methods Research Design We conducted a descriptive, naturalistic, 28 qualitative study using in-person interviews to capture nurse executives understandings, beliefs, and perceptions of end-of-life care in the hospital setting. Qualitative methods allowed us to explore nurse executives opinions and experiences more fully than might be obtained by other approaches. Overview and Setting We recruited experienced nurse executives within Arkansas. Both University of Arkansas and Veterans Administration Institutional Review Board approvals were obtained before the initiation of the study. We also obtained written consent from participants and addressed privacy protection with the participants before conducting the interviews. Participant Recruitment In consultation with the qualitative research experts from the fields of health services and nursing, we conducted purposive sampling using chain referral sampling to identify highlevel nurse executives who were knowledgeable about care provided in the hospital setting. To be included, participants had to be Englishspeaking and a high-level nurse executive. Data Collection An interview guide was developed based on the review of the literature and consultation with qualitative research experts (J. C. M. and J. E. K.). We pretested the guide with two nurse executives and determined that the questions were understandable and answerable. The interviews were conducted by the first author (K. K. G.) face-to-face in participants facilities. Interviews began with a global question about the nurse executives perceptions of the provision of end-of-life care currently, followed by probes about ideas, experiences, and knowledge of end-of-life care. 28 Interviews lasted 1.0e2.5 hours and were audio-recorded, transcribed

3 Vol. 45 No. 2 February 2013 Exploring Perceptions of End-of-Life Care 237 verbatim, and verified for accuracy. Each nurse executive received a $25 gift card for participation. Data Analysis We entered each transcript into ATLAS-ti (version 5.2; Scientific Software Development, Berlin, Germany), a text-based data management program that allows data labeling and sorting by identified variables. The data were coded using content analysis 28 with constant comparison technique. 29 After the first author (K. K. G.) coded the initial three interviews, developed definitions for each code, and prepared a preliminary codebook, the fourth author (J. E. K.) reviewed the transcripts and codebook. Emerging codes and coding differences were discussed until consensus was reached. The first and fourth authors then coded the remaining interviews by aggregating similar narratives, forming categories from the aggregates, and developing overarching themes that represented the beliefs and understandings of the nurse executives. After 10 interviews, we identified considerable repetition of data, signifying data saturation. 30 Several techniques were used to maximize the validity and reliability of the data, following guidelines for trustworthiness for qualitative studies. 31 We enhanced dependability through the use of one interviewer and one interview guide for all interviews. Additionally, we used verbatim transcriptions followed by thorough review of the transcripts against the recorded interviews. The first author enhanced credibility and confirmability by keeping a detailed audit trail of coding and theoretical decisions and reaching consensus with the fourth author. Unedited examples of narrative were used to validate the findings. Results of the coding exercise yielded strong agreement (84%). Results Sample Our final sample comprised 10 high-level nurse executives in Arkansas. Nurse executives in this study had a median and average age of 52 and 51.2 years, respectively, with nine of the 10 having a master s degree (with one nurse executive pursuing a PhD) and one unspecified. They had executive roles in a hospital setting that ranged from vice president of patient care services to chief nursing officer to nurse executive officer. These nurse executives were in charge of nursing operations in hospitals with a median bed number of 301 but ranged from approximately 20 to more than 500 beds. Hospitals were located in communities with a median population size of 55,334. Because of concerns about inadvertent disclosure of the nurse executives identities, no further detailed information about hospitals and locations could be provided. Factors Identified as Barriers to End-of-Life Care in the Hospital Setting All nurse executive interviewees discussed inadequacies in communication among physicians, patients, their families, and bedside nurses. The following case described by a nurse executive illustrates what she faced in her role as patient, family, and bedside nurse advocate. [W]e had one sister that was here with [her] mom. [This sister] thought we needed to resuscitate [her] and do everything. But the living will said no and the doctor hadn t written an order. Another sister on the phone, who was a nurse practitioner, was saying no, she s got a living will; we don t want to do all this. So you ve got one sister saying don t do everything, one sister saying do everything, a piece of paper saying don t do everything and no order. We ended up having to call a code to intubate her. We did not have an order. The nurses on the floor get in trouble from the doctor. He s saying why would you do that, she s terminal, she s got cancer, you ve got a living will. Well, where were you at? Write an order! You know if you d just looked at the living will and talked to that daughter and written us an order we wouldn t be where we re at, but anyhow. [.] I say that s a common thread. (Interview 7) Communication Inadequacies in the Provision of End-of-Life Care. Nurse executives noted that a lack of communication among multiple treating physicians for complex medical conditions predominated. This resulted in a lack of coordination and communication with the patient and his or her family resulting in a failure to

4 238 Garner et al. Vol. 45 No. 2 February 2013 discuss the patient s overall health status and prognosis. Almost never are they (physicians) talking together, that just does not happen. there s usually not one physician that s giving them the whole picture. and that causes more confusion and resource utilization. (Interview 5) Although hospitals are required to provide patients with the information and option to complete an advance directive, they characterized most advance directives as too vague and not specific enough to direct medical care decisions. I think somehow knowing people s wishes more. before they get in a compromised state. because you can sign a piece of paper and we know that they signed that piece of paper. but if we had more knowledge about really what the patient s wishes were. I think that we would go to bat for them more. (Interview 4) The nurse executives repeatedly stated that effective communication would consist of raising patients awareness about the seriousness of their medical conditions, discussing options for treatment, assisting them in making difficult treatment decisions, and promoting the use of appropriate health services. They also stated that they felt that most health care providers did not receive sufficient training in initiating and discussing challenging and difficult topics such as end-of-life planning. The participants in our study perceived that the common occurrence of delaying or deferring to other health care providers, discussions about end-of-life goals of care, and treatment decisions influenced the transitions in end-of-life care by making that transition abrupt, laden with conflict or likely not to occur at all. Education Inadequacies for Provision of End-of-Life Care. All the participants in this study indicated a need for more effective education for all disciplines and at all levels to address the unique needs patients have at the ends of their lives. Specifically, they spoke more of the educational needs of bedside nurses and nurse executives, given their experience. One nurse executive noted a need for new treatment models for providing end-of-life care in the hospital setting by bedside nurses and nurse executives, as well as other health care providers, to provide care that is patient centered. To recognize what their instincts are telling them and to feel comfortable in going outside the norm or expected, to bend rules, if you will, to be less rigid around policy. And you think of things like visiting hours, you think of things like pets, you think of those things that can bring comfort to a patient or family and to take those risks and say why not. Why can t we do those things? (Interview 8) Some nurse executives stated that having a mentoring system for bedside nurses (and other health professionals) could be helpful but noted that end-of-life care is difficult to teach because there are few universal interventions. I think that s why it s so difficult to teach because there s no one right way to do it or to act. it is about being open to the situation, open to the suggestions of both the patient, if able, and the family and being open to all possibilities, even those that are somewhat unusual. (Interview 6) The nurse executives identified a need for training and empowering bedside nurses, and other health care providers, to actively listen to patients, encourage questions, and be receptive when patients are ready to talk about the end of life. They also indicated that all health care providers, but especially bedside nurses, need to know how to establish goals with a patient. They felt that end-of-life training should be offered as an essential component of the curriculum for all upcoming health care workers and provided to the current health care workforce through continuing education. A few of the participants in our study suggested a mentoring program that demonstrates communication techniques, which might be an effective method of establishing these skills among both new and experienced health care providers. Hospital System Constraints for the Provision of End-of-Life Care. All nurse executives acknowledged that acute care hospitals have and continue to play a significant role for patients at

5 Vol. 45 No. 2 February 2013 Exploring Perceptions of End-of-Life Care 239 the end of life. However, current resource and financial constraints were characterized as major barriers to providing end-of-life care. You know, the hospital is not the place anymore. It s not the place for having time to make those kinds of decisions or, you know, to provide palliative care. It just doesn t, you know we re all under such pressure for so many reasons to get people in and get them out. And then the next level of care, you know unless it s been discussed previously. a lot of patients and families are not ready for that. And, you know, you feel like you re pushing them out the door while they re dragging their feet and not wanting to go. It s just not very satisfactory. (Interview 5) Staffing is another issue that participants felt impacted end-of-life care planning and support. They indicated that shorter hospital stays mean that nurses, as well as other health care providers, have much less time to interact with patients and less time to develop a relationship that supports discussion of goals and communication about sensitive topics such as end-of-life issues. I don t have enough staff at any level currently with financial constraints to be able to say, you know, go in there and spend two hours with that patient and their family and do what we were taught to do in nursing school. (Interview 1) Individualized care planning in light of endof-life decisions seemed to also concern the nurse executives interviewed: The plan of care is meant to be interdisciplinary obviously and we re lucky if we can get nursing, nutrition services, RT, PT maybe to all at least look at it, initial it, have some awareness. But physicians, have no, they have no, at least in a community hospital, no involvement whatsoever. And the plan is pretty cursory and it s really supposed to be individualized, but it s really not, very little and just doesn t work well. And nurses hate it, everybody hates doing them. You know, I thought for a long, long time that we need to find a way to make that more meaningful against that global, I want the global picture. Where is the patient going? How long do we think it s going to take? What do we have to do to get there? (Interview 6) Despite attempts at end-of-life care planning in the hospital with hospice or other resources, nurse executives perceived a terminally ill person s discharge to home as potentially difficult or virtually impossible if symptoms were difficult to manage (e.g., pain). Caregiver stress or burnout and cultural barriers to dying in the home added to the difficulties. Interestingly, nurse executives identified similar barriers when discussing discharge to nursing homes: I think that we have come a long ways. but I don t think that we are there yet. You know our nursing homes too, they need a lot of education. I don t think they feel comfortable with end-of-life care either. So many times they move that end-of-life care from their residential facility into the hospital, when it doesn t have to be moved into the hospital. (Interview 4) However, one participant in this study from a smaller rural hospital indicated that providing end-of-life care was an important service that her hospital provided in their community and significantly differed compared with larger more urban hospitals. For example, she indicated that a substantial portion of their revenue included care for patients at the end of life. We don t have internists. We don t have a lot of specialists. Our inpatient basis is postoperative stuff from surgery and then whatever our family practice admits. We re happy to take end-of-life care patients because it s something that. if we can get them on hospice at least we ll get some payment. (Interview 9) She indicated that end-of-life care options for patients in rural areas are usually limited to care in the home or a long-term care facility. She stated that long-term care facilities may not be able to provide areas for constant attendance by family members. She also stated that if a patient has difficult-to-control or distressing symptoms, the care providers in a long-term care facility or the home may find it difficult to make rapid and frequent adjustments of

6 240 Garner et al. Vol. 45 No. 2 February 2013 medications as can occur in the hospital setting. Factors Identified as Facilitators for End-of-Life Care Some interviewees discussed aspects that facilitated end-of-life care such as improved access to hospice services and hospice training of health care providers. Additionally, they perceived that, in their role as a nurse executive, they should advocate for individualized patient-centered end-of-life care. Hospice Services for Provision of End-of-Life Care. Greater accessibility to hospice services was identified by four participants as a positive factor for improving end-of-life care in the hospital setting. One nurse executive stated: We are better at getting hospice involved than again we were. We ve had several educational things with hospice about when it s appropriate to come to that level of care. There often is a sense of relief. That the family is getting, I think, really more support when we do that. And there s a sense of relief from the nurses that we re doing what s right for the patient and family. However, nurse executives indicated that despite this increased availability, many health care providers avoided or delayed discussions about goals of care and end-of-life care planning. They perceived this as related to the inadequate training that most health care providers obtain at both the trainee level and continuing education level. They perceived that many of these health care providers delegated the responsibility for end-of-life care planning to other health care providers or settings. This resulted in hospice assistance or care not being requested until late in the course of treatment. Nurse Executives as Advocates for Provision of Endof-Life Care. The importance of the role of nurse executives as advocates was discussed by seven interviewees. Nurse executives explained that they problem solve and advocate for the patients by working with physicians, other administrators, and staff to develop policies and procedures to facilitate care. Nurse executives felt that they played an important role in establishing and implementing these policies in the hospital setting especially in the area of end-of-life care, as many current hospital policies are often system oriented and not patient centered. Well, I m into breaking all those rules. I ve done that before, broken a fair amount of rules to help people get whatever they need to give them some comfort. so. I guess that s why I m a nurse exec because you have to be able to be the one that s in charge that can break the rules. (Interview 8) Nurse executives also function as advocates for patients, their families, and bedside nurses regarding communication about prognosis, treatment goals, and end-of-life care. They felt that communication inadequacies lead to more uncertainty, increased resource utilization, longer hospital stays, and decreased satisfaction with the care provided. Oh, the nurses feel definitely fragmented and periodically [nurse executives] have to run interference and get them all together to say who s the main spokesperson and who s having the talk with the family because each one of you is sending a different message and the family s not getting it. (Interview 8) Another nurse executive felt that administration was not involved soon enough with difficult end-of-life situations. She said: I sometimes wish people would involve me sooner. because there is no doubt that one patient and family experience can turn an entire unit upside down. (Interview 3) Nurse executives in this study saw themselves as advocates for patients, families, bedside nurses, other health care workers, and the facilities they represent. Many of the nurse executives described their early nursing experience as a bedside nurse, or for some as a nursing assistant, and working their way up to their current executive position. They reported that they used these practical, in-the-trenches experiences to advocate for policies and procedures that address the unique needs of patients at the end of life and their families. They identified the nurse executive as a key individual in hospital administration who can advocate for

7 Vol. 45 No. 2 February 2013 Exploring Perceptions of End-of-Life Care 241 high-value, patient-centered, end-of-life care in the hospital setting. Discussion This study explored nurse executives perceptions of the provision of end-of-life care in the hospital setting. Nurse executive participants, in this study, recognized several continuing unmet needs for patients at the end of life, such as communication deficits, educational needs, and hospital system constraints that hamper the delivery of optimal end-oflife care in the hospital setting. 18,32e34 The nurse executives perceived that the growing awareness and availability of hospice services may facilitate improving the care provided at the end of life. However, they, as others have found, identified that it also requires effective communication about end-of-life wishes and a referral, which frequently occurs late in the care or does not occur at all. 35e37 They also identified the nurse executive as an underused resource and advocate in the hospital setting for improving the provision of end-of-life care. Without effective communication, patients and their families may not have enough time to accomplish life completion goals or accommodate to the impending loss. They also may suffer more anxiety, more depression, or have more difficulty with bereavement. 38 Inadequate communication also may impede health care providers abilities to address the full range of patients and their families needs at the end of life. 9,39 They reported, as have others, that our health care system is designed to address acute episodic illness and does not adequately address the needs of patients with serious chronic illnesses with long-term care needs, including end-of-life planning. 26 The nurse executives reported concerns that inadequate communication in the context of multiple health care providers across multiple transitions and levels of care, which also has been identified in the recent literature, 9 contributes to increased resource utilization and confusion for patients and their families. Unfortunately, comprehensive and interdisciplinary training in end-of-life care and effective communication is rarely, or inadequately, provided in current curricula. 40 Nurse executives indicated, as found in other studies, 41e44 that this training should be offered as an essential component of the curriculum for all upcoming health care workers and provided to the current health care workforce through mentoring and continuing education. 45 The nurse executives acknowledged that it was generally difficult for bedside nurses, and other health care providers, to comprehend and manage these complex conditions and needs with less and less time spent with patients because of shortened hospital stays and increasing workloads. This lack of time reported in this study is consistent with other studies indicating that these pressures play a role in the provision of end-of-life care in the hospital setting. 46 They also indicated that nurses have traditionally been patient advocates but because of uncertainty about what the patient may want, this advocacy from bedside nurses is less likely to occur. This study has several limitations. Qualitative studies are inherently not designed to assess the prevalence of the identified themes but to describe how nurse executives perceived the current provision of end-of-life care in the hospital settings in which they work. This study was not designed to explore solutions to the perceptions that the nurse executives identified, and further research is needed to investigate solutions to the barriers and facilitators they identified. In addition, future quantitative research is needed to address whether the perceptions described previously are characteristic of more generalizable samples of nurse executives. The sample included high-level nurse executives and did not include other nursing administration that may play a bigger role in the end-of-life care provision. These findings highlight that nurse executives are currently an underused resource in end-of-life care but are poised to be able to champion innovative models and a culture of change that integrates high-value care for patients with serious and chronic illnesses. 46 Our findings may be used to inform future interventions that engage nurse executives in their administrative role to accomplish the systemic change that is needed to improve the care provided to patients at the end of life in the hospital setting. These include a focus on improving communication at the bedside and in transitions of care, enhancing educational interventions, and developing patient-centered care

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