Engaging patients using an interprofessional. approach to shared decision

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1 CANO conference feature Engaging patients using an interprofessional approach to shared decision making by Dawn Stacey and France Légaré ABSTRACT Many cancer treatment and screening decisions are difficult given that they rely upon patients informed preferences. Interprofessional shared decision making is when two or more health care professionals collaborate with a patient to reach an agreed-upon decision. To support patients engagement in shared decision making, effective interventions include patient decision aids and/or decision coaching. Patient decision aids are typically written or video-based resources, while decision coaching is provided by trained health care professionals who are supportive but non-directive. Both interventions make explicit the decision, provide balanced information on options based on the best available evidence, and help patients consider what matters most. The overall aim is to discuss how oncology nurses can engage in an interprofessional approach to shared decision making. CASE STUDY Mr. Tremblay is a healthy 65-yearold man diagnosed with localized prostate cancer. He received his prostate biopsy results and was told that he has several options each with different long-term complications. He can choose active surveillance or treatment. Treatment options include surgery, external radiation therapy, or ABOUT THE AUTHORS Dawn Stacey, RN, PhD, CON(C), Professor, School of Nursing, University of Ottawa dstacey@uottawa.ca France Légaré, MD, PhD, CCFP, FCFP, Professor, Faculty of Medicine, Laval University France.Legare@mfa.ulaval.ca Address for correspondence: Dawn Stacey, 451 Smyth Road (RGN 1118), Ottawa, ON K1H 8M ext 8419 dstacey@uottawa.ca brachytherapy. The treatments have similar survival outcomes, but risk of long-term complications such as impotence, incontinence, and bowel irritation varies. Mr. Tremblay is uncertain about what to choose. What is the best option for him? INTRODUCTION Individuals diagnosed with cancer often have multiple options and experience a sense of personal uncertainty about a best course of action. This personal sense of uncertainty, also known as decisional conflict, is often caused by the need to weigh risks across options, anticipated loss, concern about regret, and/or challenge to personal life values (NANDA, 2005). For men with prostate cancer, the chances of having long-term complications such as impotence, incontinence, and bowel irritation depend on the option (see Table 1). Therefore, the best option for men with prostate cancer needs to be based on the best available evidence and patients informed preferences. However, only about half of patients are actually involved in decision making and the other half agree to the treatment recommended by their practitioner (Kiesler & Auerbach, 2006). For prostate cancer treatment, urologists typically recommend surgery, while radiation oncologists typically recommend radiation therapy. Studies in Canada and the U.S. found that many urologists and radiation oncologists provide unbalanced information on options in favour of Table 1: Low-risk prostate cancer options, benefits and harms (PSA<10; Gleason < 6) (Division of Cancer Care and Epidemiology, 2013) POSSIBLE BENEFITS: Death due to prostate cancer (over 15 years) No treatment Surgery External Radiation 7 out of 5 out of Full bladder control out of 88 out of POSSIBLE HARMS: Death due to treatment Not applicable 1-3 out of 1,000 Impotent due to treatment Not applicable out of * Incontinence: leak enough urine to need to wear a pad No bladder control: need to wear an adult diaper or use a catheter, or have surgery Bowel problems: bothersome chronic diarrhea and blood in the stool *rates depend on type of surgery 0 out of 10 out of 0 out of 2 out of 0 out of 0 out of 5 out of 99 out of <1 out of 1, out of 1 out of 0 out of 2-5 out of Brachytherapy 5 out of 95 out of <1 out of 1, out of 4 out of 1 out of 1 out of 455

2 their own expertise and they are not able to correctly guess men s preferences (Fowler et al., 2000; Pearce, Newcomb & Husain, 2008). Practice variations in age-standardized rates of surgery for prostate cancer range from 32% to 57% across Ontario, and this variation may be unwarranted given the best option depends on men s informed preferences (Cancer surgery in Ontario: ICES Atlas, 2008; Wennberg, 2002). The experience of men with prostate cancer is similar to that of men and women facing cancer treatment or screening decisions for other types of cancer. The overall aim of this article is to discuss how oncology nurses can better support patients to achieve quality decisions using an interprofessional approach to shared decision making. More specifically, we will define an interprofessional approach to shared decision making, explore tools for oncology nurses to use, and discuss ways of implementing these approaches and tools into clinical practice. Finally, we will demonstrate how oncology nurses can use these approaches and tools in the case exemplar of Mr. Tremblay who has learned that he has localized prostate cancer. INTERPROFESSIONAL APPROACH TO SHARED DECISION MAKING Shared decision making is the process by which a health care choice is made between a patient and a health professional. Elements of shared decision making include being informed on the options, clarifying patients values/preferences, and making or deferring the decision (Makoul & Clayman, 2006). Ideally, the decision is also informed using unbiased information with mutual agreement on the best course of action. Shared decision making has been described as the crux of patient-centred care that aims to ensure all care is respectful of and responsive to individual patient preferences, needs and values and ensuring that patient values guide all clinical decisions (Committee on Quality of Health Care, 2001; Weston, 2001). A synthesis of studies has reported that when patients are involved in decision making, they have improved quality of life, better sense of control over their illness, enhanced symptom relief, and experience less fatigue, depression, and illness concerns (Hibbard & Greene, 2013; Kiesler & Auerbach, 2006). However, patients are very seldom engaged in decisions about their health despite that most would prefer a more active involvement in decision making (Couet et al., 2013; Kiesler & Auerbach, 2006). Interprofessional shared decision making is when two or more health care professionals collaborate with the patient to reach an agreed-upon decision (Légaré, Stacey, Gagnon, et al., 2011; Légaré, Stacey, Pouliot, et al., 2011). Interprofessional collaborations build on the strengths of each profession s Figure 1: Interprofessional Shared Decision Making Model (IP-SDM) 456 Volume 25, Issue 4, Fall 2015 Canadian Oncology Nursing Journal

3 approach to care delivery such that professionals work within their full scope of practice and without intentional duplication of services. According to the Interprofessional Shared Decision Making model (Figure 1), the process of shared decision making involves: 1) making explicit the decision to be made; 2) exchanging information on options, benefits, and harms; 3) discussing values for outcomes of options and patients preferences; 4) determining feasibility of the options; 5) expressing a preferred choice; 6) choosing an option; and 7) implementing the chosen option. This model was built by an interprofessional and international team upon findings from a theory analysis of previous conceptual models (Légaré, Stacey, Pouliot et al., 2011; Stacey, Légaré, Pouliot, Kryworuchko & Dunn, 2010). The interprofessional shared decision making model is composed of two main axes, with the vertical axis representing the shared decision making process and the horizontal axis representing the individuals involved in the process (Légaré, Stacey, Gagnon et al., 2011; Légaré, Stacey, Pouliot et al., 2011). There are two main teams : the patient/family team and the interprofessional team that may include one member assuming the decision coaching role. Ultimately, the two teams combine to form one. There are four assumptions underlying the model. First, involving patients in shared decision making is essential for reaching decisions that are informed and based on individual patient values. Second, by the interprofessional team having a common understanding of the elements of the shared decision making process and recognizing the influence of various individuals on the process, there will be improved success in reaching a shared decision. Third, achieving an interprofessional approach to shared decision making may occur synchronously in the example of a family conference in the intensive care unit but, more often, occurs asynchronously. Fourth, family or significant others are important stakeholders involved or implicated by the decision and their values and preferences may not be consistent with the patient. Tips for nurses. Oncology nurses are key members of the interprofessional team and often influential in the shared decision making process when patients are facing preventative, screening or treatment decisions. Reflecting upon your role in shared decision making may help you be more aware of how you can better support patients facing these tough cancer decisions. Are patients aware that there is more than one option (e.g., including status quo)? Are your preferences or those of other team members influencing the patients or are you considering the patients values and preferences? Who on the health care team is responsible for coaching the patient into the decision making process and, thus, assuring the patient understands his/her options? What is the typical process by which decisions are made? Are patients experiencing decisional conflict? (see Table 2). TOOLS TO FACILITATE SHARED DECISION MAKING: PATIENT DECISION AIDS Patient decision aids and decision coaching are tools that can facilitate the process of shared decision making. Patient decision aids are defined as, at a minimum, making explicit the decision, providing evidence-based information on options, benefits and harms, and helping patients clarify their values for outcomes of options to reach a preferred option (Stacey et al., 2014). They may also include probabilities indicating the chances of benefits and harms, personal stories, and guidance in the steps of decision making. Formats for patient decision aids typically include printed materials, videos, and/or computer-based interactive programs. They are designed to be used either in preparation for practitioner consultation or for use with a practitioner during the consultation. While the main goal of educational materials is to improve knowledge, patient decision aids support progress in decision making. Findings from a systematic review evaluating the effectiveness of decision aids for people facing treatment or screening decisions revealed 52 of 115 (45%) randomized controlled trials were focused on oncology decisions (Stacey et al., 2014). Topics include: a) screening for prostate, colon, cervix, and breast cancers; b) genetic testing for breast, ovarian, and colon cancer; c) surgical treatment including breast cancer (e.g., lumpectomy versus mastectomy), prostate cancer (e.g., prostatectomy versus radiation therapy versus active surveillance), prophylactic mastectomy, orchiectomy for advanced prostate cancer; and d) chemotherapy or chemoprevention. Rigorous evaluation of patient decision aids indicates that patients who use decision aids have improved quality of decisions, as evidenced by enhanced knowledge, a more accurate understanding of the chances of benefits and harms, and improved match between patients values and the chosen option (Stacey et al., 2014). They reduce overuse of options that are not beneficial for the majority of those using it and they have a tendency Table 2: SURE test to screen for decisional conflict (Légaré et al., 2010) Sure Uninformed Risk/Benefit Ratio Encourage English Do you feel sure about the best choice for you? Do you know the benefits and risks of each option? Are you clear about which benefits and risks matter most to you? Do you have enough support and advice to make a choice? French Êtes-vous certain de ce qui constitue le meilleur choix pour vous? Est-ce que vous connaissez les bénéfices et risques de chacune des options? Avez-vous le sentiment de savoir ce qui est le plus important pour vous à l égard des risques et bénéfices? Avez-vous suffisamment de soutien afin de faire votre choix? 457

4 to increase uptake of options that are beneficial for the majority of patients using it, thus fostering optimal use of health-related options. As well, patients are more engaged in the decision-making process with less decisional conflict and improved communication with their practitioner. Tips for nurses. Are you using patient decision aids in your practice? If not, the easiest way to find patient decision aids is to use an internet search engine. The A to Z Inventory is the largest international collection of publicly available patient decision aids catalogued by The Ottawa Hospital Research Institute ( You can search for a specific topic or browse the full inventory. Each patient decision aid is summarized, quality assessed using the International Patient Decision Aid Standards (IPDAS), and has a direct link for obtaining access. If you don t find a patient decision aid for a specific clinical situation you can use a generic one, Table 3: Myths about (interprofessional) shared decision making Myth It s the latest fashion! We already do it! Patients prefer to make decisions on their own! Patients don t want to be involved! Not everyone can do it! It takes too long! Using shared decision making will solve all the problems! Fact the Ottawa Personal Decision Guide that you can populate with specific information html. Once you find a patient decision aid, are the options included relevant to your patient population and/or clinical setting? TOOLS TO FACILITATE SHARED DECISION MAKING: DECISION COACHING A decision coach is a trained facilitator who is non-directive and facilitates progress in decision making by providing support that aims to develop patients skills in thinking about the options, preparing for discussing the decision in a consultation with their practitioner, and implementing the chosen option (O Connor, Stacey, & Légaré, 2008; Stacey et al., 2013). More specifically, decision coaches: a) assess patients decision making needs; b) provide information on options, benefits In 1959, the modern physician was described as sharing decisions with their patients (Menzel, Coleman, & Katz, 1959). There is always room for improvement. A review of 33 studies showed an average of 23 out of elements of shared decision making occurring in current clinical practice (Couet et al., 2013). It takes at least two people for shared decision making (Charles, Gafni, & Whelan, 1997). Over 90% want to be involved in shared decision making, but only about 50% are involved and those who are more vulnerable are less involved in sharing decisions = systematic bias (Kiesler & Auerbach, 2006) Implementing interventions to facilitate shared decision making is better than doing nothing. Those interventions focused on both the interprofessional team and patient are superior (Légaré et al., 2014) In studies of patient decision aids, seven studies showed no difference in length of time during the consultation, 1 study was longer, and one study was shorter (Stacey et al., 2014) No, but it will improve the process of decision making and the outcomes (Stacey et al., 2014) and harms (verbally or using a patient decision aid); c) assess patients understanding; d) clarify patients values on features and outcomes of options; and e) may screen to determine patients needs relevant to implementing the chosen option (e.g., motivation, self-confidence, barriers, commitment). Coaching may be provided face to face or via telephone. Members of the interprofessional team who may assume the decision coaching role are diverse because decision coaching is not defined a priori by a specific profession and, thus, can be undertaken by nurses, genetic counsellors, social workers, psychologists, and pharmacists, etc. A review of 10 rigorous studies showed that when decision coaching was used alone or with a patient decision aid, patients were more knowledgeable, had higher perceived involvement in decision making and were more satisfied with the decision-making process than those who did not have coaching or those who only had a patient decision aid (Stacey et al., 2012). Nurses trained as decision coaches describe their experiences as more likely to recognize the need for providing decision support to patients, better prepared with types of questions to explore with the patients, and overall feeling more skilled in helping patients (Stacey, Pomey, O Connor & Graham, 2006). Tips for nurses. To learn more about decision coaching and shared decision making, there is an online program Ottawa Decision Support Tutorial ( It is available free of charge and provides a certificate of completion that can be used as evidence of continuing education. The Ottawa Personal Decision Guide is a two-page decision aid that can be used for coaching patients through the process of decision making for any decision. As well, there is a script for standardizing the way it is used and a video demonstrating its use. Nurses also learn through reflective practice and the Decision Support Analysis Tool (DSAT-10) can be used to self-appraise the quality of your decision coaching (Stacey, Taljaard, Drake & O Connor, 2008). 458 Volume 25, Issue 4, Fall 2015 Canadian Oncology Nursing Journal

5 IMPLEMENTATION OF INTERPROFESSIONAL SHARED DECISION MAKING Although there is good evidence to support the need to better engage patients in shared decision making, many barriers interfere (Légaré & Thompson-Leduc, 2014). Interestingly, most of these barriers are, in fact, myths to be dispelled (see Table 3). To overcome barriers, patients from 44 studies have specifically suggested that nurses should explain information on options, provide support by listening to patient preferences, and then advocate for patients by sharing their preferences with physicians (Joseph-Williams, Elwyn & Edwards, 2014). Findings from a synthesis of 39 studies showed that the most successful approach to implementing shared decision making used strategies that targeted both health care professionals and patients (Légaré et al., 2014). Health care professionals were more likely to use shared decision making if they received training. Patients were more likely to influence shared decision making when prepared with patient decision aids. In any case, in trials where both training of providers and decision aids for patients were used, it appears that implementation of shared decision making was more successful than when only one or the other was used. Tips for nurses. To better support patient engagement in making decisions within clinical practice, oncology nurses can start by identifying the common decisions and determine at what point these decisions occur within the process of care. Are there any relevant patient decision aids that could be used? Is there a need to enhance the shared decision-making knowledge and skills of interprofessional health care team members? Measuring patients knowledge or decisional conflict leaving the consultation has stimulated the need to improve the way patients are supported to share decisions (The Health Foundation, 2013; Légaré et al., 2010). Another option is to encourage patients to ask three questions (Shepherd et al., 2011): 1) What are my options? 2) What Figure 2: Prostate cancer treatment planning preference report are the possible benefits and harms of those options? 3) How likely are the benefits and harms of each option to occur? CASE EXEMPLAR: MR. TREMBLAY Mr. Tremblay is a healthy 65-year-old man diagnosed with localized prostate cancer. He has several options including active surveillance, surgery, external radiation therapy, or brachytherapy. Mr. Tremblay is uncertain about what to choose. To support men like Mr. Tremblay, we implemented an interprofessional approach to shared decision making into the prostate cancer clinical pathway at The Ottawa Hospital. The following outlines the new process and strategies used. 1. Based on the care map, the urologist informed Mr. Tremblay of having localized prostate cancer based on his biopsy results and told him that he has several options. As part of routine practice, all patients complete a quality-of-life survey to assess their overall quality of life (Hurst et al., 1997) and prostate-specific indicators including current sexual function, urinary function, and bowel function using 459

6 the expanded prostate cancer index composite (EPIC) (Wei, Dunn, Litwin, Sandler & Sanda, 2000). Their quality of life is reassessed periodically after treatment. 2. The care map was changed to provide equal opportunity for Mr. Tremblay to receive a consultation with a radiation oncologist and urologist. 3. The nurse assessed his supportive care needs, provided him with general patient education materials, and gave him a patient decision aid to review at home. The patient decision aid was chosen following a review of seven that were publicly available in the A to Z inventory ( The interprofessional team reviewed their quality scores and discussed relevance to their program. 4. To clarify Mr. Tremblay s values and verify his knowledge of the options, the decision quality survey for prostate cancer was also sent home with him to complete after using the patient decision aid. This survey has nine value statements rated on a scale from 0 not important to 10 very important and six multiple choice knowledge questions (Fowler, Gallagher, Drake & Sepucha, 2013). 5. On the return visit (and occasionally by telephone between visits), the nurse reviewed Mr. Tremblay s understanding of his options (see Table 1), corrected misconceptions, answered his questions, and prepared him for discussing his options in the consultation with the urologist and/or radiation oncologist. 6. To facilitate discussion in the consultation, a one-page preference report was used to summarize Mr. Tremblay s clinical status including quality-of-life indicators and communicate his preferences and decisional needs (see Figure 2). Decisional needs are screened using the SURE test version of the decisional conflict scale (see Table 2). According to this report, Mr. Tremblay correctly understood four of six knowledge questions and has strong values favouring active treatment that can be completed quickly. He also wants to avoid brachytherapy and any risk of bowel problems. 7. During the consultation, Mr. Tremblay and the urologist agreed that prostatectomy would be the best option given his informed values. Prior to initiating these changes, the nurses and social workers on the team participated in a skills-building workshop provided by a radiation oncologist and oncologist nurse with expertise in shared decision making. CONCLUSIONS Oncology nurses on the interprofessional team are well positioned to support patients to participate in shared decision making. To engage patients, nurses should make explicit that a decision is being made, provide balanced evidence on options, ask patients what is most important to them, and advocate for patient preferences informing the decision-making process. Training programs are available to enhance knowledge and skills of nurses, patient decision aids and decision coaching can be used to facilitate patient preparation for shared decision making, and implementation exemplars can be used to determine best practices for supporting patients in clinical practice to be involved in oncology treatment or screening decisions. ACKNOWLEDGEMENTS This paper was presented at the Canadian Association of Nurses in Oncology 2014 conference in Quebec City. Drs. Légaré and Stacey completed their doctoral studies together under the supervision of Emeritus Professor Annette O Connor at the University of Ottawa. Dr. Légaré s doctoral research focused on enhancing shared decision making in primary care and Dr. Stacey s research focused on enhancing decision coaching provided by nurses working at a provincial call centre. 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