Shared Decision-­‐Making in the Real World Real-­‐Life Examples from Patients and Health Care Organizations Background Today’s health care system too often provides uncoordinated, fragmented care that remains unaffordable for many. This situation is exacerbated when a patient is diagnosed with a life-­‐
limiting illness, and critical decisions arise at multiple points along the care continuum. Funded by a grant from the Robert Wood Johnson Foundation, the Institute for Clinical Systems Improvement (ICSI) studied whether introducing the concept of Shared Decision-­‐Making in palliative care could help medical groups achieve the Triple Aim of improving the health of the population, the patient experience and the affordability of care. It also explored whether the components of palliative care, usually reserved for the last two years of a patient’s life, could be successfully implemented in primary care and at the time of diagnosis. Three broad goals were identified for the Shared Decision-­‐Making initiative: 1. Increase patient-­‐centered care by listening to and honoring the preferences and values of patients and families 2. Increase the amount of information sharing with patients and families, and engage them by using Shared Decision-­‐Making in care decisions 3. Collaborate with patients and families to create tools and methods to achieve these aims Shared Decision-­‐Making – What is it? The Minnesota Shared Decision-­‐Making collaborative defines Shared Decision-­‐Making as “a process in which patients and providers collaborate to ensure that the patient is well-­‐informed, clarify all acceptable options and choose a course of care consistent with patient values and preferences and the best available medical evidence.” Shared Decision-­‐Making can eliminate the decision conflict that occurs when a patient is presented with multiple options or is unable to make a decision independently. Decision support clarifies the decision and guides the deliberation, using decision aids, or evidence-­‐
based tools, to outline the advantages and disadvantages of various options. Situations involving palliative care present unique opportunities for Shared Decision-­‐Making. Patients often feel they can’t talk to their physician about their concerns because he will think they doubt his abilities. Physicians often feel they can’t talk to their patient about aspects of their treatment because they think she will believe the physician has given up. Physicians and patients bring unique perspectives to Shared Decision-­‐Making that can improve outcomes and patient satisfaction. Clinicians bring a diagnosis, the disease etiology, a Shared Decision-­‐Making in the Real World Page 1 prognosis, treatment options (including best practices) and outcome possibilities. Patients bring the intimate experience of the illness itself, along with knowledge of their life circumstances, risk tolerance, values and preferences. In the end, Shared Decision-­‐Making means there should be no decision about a patient without that patient’s input. To determine if Shared Decision-­‐Making could improve patient outcomes and satisfaction in palliative care situations, ICSI piloted its Collaborative Conversation™Map in three diverse medical settings. The pilots focused on palliative care because it is often underutilized or used at the last minute, resulting in uncoordinated episodic care that may include 911 calls, visits to the Emergency Department and exacerbation of a patient’s symptoms. (See Appendix, Illustration 1.) The goal is to provide coordinated care with parallel processes that include Shared Decision-­‐Making. (See Appendix, Illustration 2.) What is learned through palliative care can be applied across the health care spectrum. Details about the three pilots, along with actual patient experiences, were shared at a workshop in June 2012. An overview begins on page 3. Collaborative Conversation™ ICSI’s Collaborative Conversation Map serves as a clinical workflow for clinicians as they initiate and navigate the Shared Decision-­‐Making process. Care teams use the map to document team best practices and formalize a common vocabulary. Patients find the map helpful in guiding them through the Shared Decision-­‐Making process and sharing critical information with family and clinicians. Steps within the Collaborative Conversation Map (see illustration below) include preparing, building a partnership, exploring options, making a decision and then reassessing. Shared Decision-­‐Making in the Real World Page 2 Health care groups that have implemented Collaborative Conversations have found an increased understanding of the roles and responsibilities of team members, leading to a more cohesive environment. The process itself is normalized as the model is built into electronic health record systems, care management meeting processes and reporting structures. Groups using Collaborative Conversations report that they have moved their patient care from a paternalistic approach to an inter-­‐disciplinary approach and have demonstrated the essential role of patients and their families in improving care. Collaborative Conversations can be helpful in many medical situations, with cues that can help care teams know when to initiate a discussion. (Illustration 3 in the Appendix indicates cues that the care team should consider, as well as the patient and family needs, in the context of the Collaborative Conversation.) Cues may include changes in: • A patient’s priorities or life goals • Diagnosis or prognosis • Health status or symptoms • Support system • Medical evidence or best practice • Clinician/caregiver contacts Patient and family needs also impact Collaborative Conversations. They might include a request for support and information, advance care planning, consideration of values, trust, care coordination and responsive care system. Sometimes patients need to be given permission to participate in decisions about their care. Workshop Overview The goals of the June 2012 workshop were to communicate Shared Decision-­‐Making activities in the local health care community, help attendees identify strategies on how best to implement and sustain Shared Decision-­‐Making in a clinic setting, share lessons learned on how to use the process to help providers overcome their reluctance to discuss emotionally charged topics, and communicate the need for patient involvement and its impact on patient satisfaction and outcomes. PILOT PROGRAMS FROM THREE HEALTH CARE ORGANIZATIONS “Normalizing/Integrating Palliative Medicine and Medical Oncology with Shared Decision-­‐Making” -­‐ Marshfield Clinic A multidisciplinary team of clinicians at the Marshfield Clinic in western Wisconsin used Shared Decision-­‐Making to address the issue of palliative medicine and medical oncology. Clinical Coordinator Sherry Wiedow, RN, noted that while oncology and palliative medicine work closely together to serve patients, they don’t always work well together. By creating a Shared Decision-­‐Making in the Real World Page 3 Collaborative Conversation map, clinic administrators and clinicians improved their ability to implement a Shared Decision-­‐Making model to improve care. The initial team consisted of an oncology physician, nurse practitioner, registered nurse, certified medical assistant, manager, palliative medicine physician and social worker. Deeply aware of potential barriers, including misperceptions, workloads, knowledge deficits regarding Shared Decision-­‐Making and limited access to the palliative medicine physician’s schedule, they set some aggressive goals: • Integrate palliative medicine and medical oncology practices • Create cohesiveness between the two, improving interactions and decreasing variability • Increase physician and staff knowledge of Shared Decision-­‐Making • Improve patient and family understanding of how and why palliative medicine fits into the cancer care continuum The team members created a Collaborative Conversation Map that served as a script for physicians and staff, as well as printed materials about Shared Decision-­‐Making and a flow chart to track their progress. Any team member could identify patients. Once that happened, the electronic medical record was reviewed and a log created for each patient using headings from the Collaborative Conversation Map. This information was then distributed to team members, who held weekly meetings to review patient progress. In order to facilitate discussions and help patients prioritize their top two most bothersome issues, the team put in place a PEACE-­‐Tool. Containing 16 items, it looked at: P = physical symptoms E = emotive and cognitive symptoms A = autonomy and agency C = communication, closure and contribution E = economic T = transcendent items Patients and the Shared Decision-­‐Making team rated these items and identified options together. Sometimes issues that were identified as high priority by clinical staff were not the issues causing the most anxiety for a patient. Difficult situations often fell into one of three categories: difference of opinion between patient and family, difference of opinion between patient/family and physician, and fear of abandonment on the part of the patient when aggressive management was not offered. The Marshfield Clinic Shared Decision-­‐Making team learned several lessons from this initiative: 1. Multiple bridges have been built between medical oncology and palliative medicine and connections continue to grow. 2. Patient satisfaction with the process and the outcomes equals success. 3. There is a need for printed education materials for patients and their families. 4. Staff and physicians need ongoing education. Shared Decision-­‐Making in the Real World Page 4 Going forward, the clinic plans to expand the Shared Decision-­‐Making model to additional medical oncology providers. It will produce ongoing education materials for patients, families, physicians and staff, and plans to collaborate with its survivorship program on the patient symptom and distress assessment tool. “How Never to Dread Talking to a Patient or Family Again (While Achieving the Triple Aim)” -­‐ North Memorial Hospital John Degelau, MD, Medical Director of a two-­‐year care transition program, recognized the need to improve advanced illness detection by providers and knew that there was no standardized conversational approach at North Memorial Hospital. He, along with other leaders, introduced Shared Decision-­‐Making into an already successful pilot program for end-­‐of-­‐life care. North Memorial used the Collaborative Conversation process to guide the discussion and make it easier to identify issues. The goal was to make the patient’s life more predictable and sustainable by making the process more reliable. The North Memorial team gathered its key patient advocates, including home care liaisons, social workers, case managers and chaplains. They held several sessions to talk about the nominal ranking process and share tips that worked well. Another two or three sessions were called “enlightened” nominal ranking, with participants using external resources and decision guides to facilitate the process. The group reviewed metrics and shared feedback several times a year. A combined effort between clinicians and non-­‐clinicians at North Memorial resulted in a Collaborative Conversation map and clinical workflow specific to palliative care. A study of the metrics revealed there was more of a care team/patient balance of influence on decisions related to patient care after the use of this process. The first step in the map, “Preparing,” included a review of essential medical facts and the decisions to be made, ensuring no care team bias. The team determined who needed to be involved and made sure a decision-­‐friendly environment was free of distractions for the participants. The next step was “Building a Partnership.” This consisted of introductions and a teach-­‐back moment in which the patient was asked to repeat what he or she understood about the discussion. Then, the patient was asked to make an “I wish” statement about his or her care. Together, the physician and patient agreed on the problem needing a decision. Next, “Explore Options” gave physicians and patients the opportunity to cite the benefits versus the harm of options available to them. Patients were asked to identify their most important concern, while physicians participated in active listening, comprehending what they heard before providing a recommendation. Shared Decision-­‐Making in the Real World Page 5 The fourth step was “Making a Decision.” Once it was determined that a patient or family could make a decision, physicians needed to check their understanding and clarify any questions, always closing with a statement of realistic hope. If no decision could be made, the team needed to determine where the decisional conflict was -­‐ within the family or with the care team. In order to move forward, participants utilized a style of negotiation that identified the competing interests involved and their interplay of influence on the decision. If necessary, the parties “Reassessed” the situation and decided when to revisit the issue. Sometimes this happened when a condition-­‐specific decision aid was offered or when the situation escalated. Degelau indicated that at the end of the project, the goal of making patients’ lives more predictable and sustainable was met as a result of this more reliable process. “Shared Decision-­‐Making” -­‐ Minnesota Oncology At Minnesota Oncology, formalized Shared Decision-­‐Making is woven into the survivorship program and tied to patient satisfaction. Michele O’Brien, RN, Survivorship Clinical Nurse Specialist, Minnesota Oncology, reported on its pilot program that introduced survivorship and palliative care concepts early in a patient’s treatment and incorporated Shared Decision-­‐Making and Collaborative Conversations at various points along the continuum of care. Key times often are at diagnosis, the end of treatment and when there is a change in the patient’s medical status. Patients with a cancer diagnosis often have trouble absorbing information, but putting patients in control of the conversation and decisions affecting them increases their satisfaction with their care. Minnesota Oncology’s survivorship program had several goals: • Improve clinical outcomes • Improve overall quality of life • Conduct real-­‐time evaluation of a patient’s quality of life • Conduct early interventions • Be supportive • Respond to emotional and functional needs • Help the patient participate in care • Provide access to advocacy • Decrease hospitalizations A guided care trial at eight locations involving 904 older patients with chronic conditions revealed that patients had: • 24 percent fewer hospitalizations • 37 percent fewer skilled nursing facility stays • 15 percent fewer Emergency Department visits • 29 percent fewer home care episodes Shared Decision-­‐Making in the Real World Page 6 In addition, the annual net savings was $75,000 per nurse or $1,364 per patient. A quality of life study in which the physical, functional, emotional and social well-­‐being was measured in 239 patients with lung cancer revealed that those with a quality of life score less than the median of 66.7 had a 69 percent higher death rate. Early palliative care resulted in a survival extended by two months and clinical improvement in quality of life. O’Brien provided an example of a 69-­‐year-­‐old woman with lung cancer to demonstrate a successful series of Collaborative Conversations at multiple stages of the patient’s treatment and recovery. Physicians and advanced practice nurses used the Collaborative Conversation map to plan the patient’s course of treatment, build rapport with her, tailor her interventions, incorporate decision support and aids, and then reassess the situation. An evaluation of the patient’s experience revealed improved communication with physicians, nurses and family, early interventions, reduced hospital readmissions and increased patient satisfaction. In a study of 75 patients between January 1 and April 30, 2012, the Functional Assessment of Chronic Illness Therapy (FACIT) measurement system revealed the top patient concerns were: • Physical/functional – 60 percent • Fatigue – 52 percent • Emotional – 41 percent • Food/nutritional – 37 percent • Body image – 31 percent • Mind/body/spirit – 24 percent • Health care directive – 21 percent Post-­‐survivorship, a higher percentage of respondents said they felt like they had been involved in all of their health care decisions, and a greater number said they felt their health care team cared about their quality of life. Shared-­‐decision making, using Collaborative Conversations, helped patients with cancer relate better to their physicians and improved their ability to address physical, functional, emotional and social needs. IT’S ALL ABOUT THE PATIENT: THREE PATIENT EXPERIENCES Shared Decision-­‐Making is about improving patient engagement in order to enhance patient outcomes. Optimum patient centeredness often begins with basic issues, such as controlling noise and visiting hours in a hospital. At the highest level is self-­‐management, getting patients to care for themselves. Evidence shows that Shared Decision-­‐Making has a positive impact on patients and clinicians. There is more trust, better understanding of the issues and even less testing. In addition, the Shared Decision-­‐Making in the Real World Page 7 total cost of care for patients with patient-­‐centered care is 48 percent less than for those without.1 The June 2012 workshop concluded with real-­‐world examples from two patients and one caregiver. Each shared their experience on how Shared Decision-­‐Making impacted them and offered suggestions to health care participants for how it could be improved in the future. “The Information Was Overwhelming” -­‐ Kathy Bassett’s Story Kathy Bassett, a palliative care and hospice employee for Allina Hospitals and Clinics, was also a four-­‐year caregiver for her close friend, who died of ovarian cancer. Their journey made her realize the importance of Shared Decision-­‐Making at all stages of an illness. After hearing her friend’s cancer diagnosis, Bassett admits they both were “sideswiped” and had multiple questions. • Why isn’t the doctor telling us about other options? • Why are we not hearing about likely scenarios and prognoses? • How will treatment options affect the prognosis? • Does the doctor know about all side effects? • What does the doctor hope for her care? • Will her questions and requests alienate her doctor? • How can we research our questions well enough to get answers we need? “The information was extremely overwhelming,” said Bassett “and challenging for non-­‐medical people to understand.” The last few months of her friend’s life were not what Bassett or her friend wanted. “We had hoped for a peaceful death, with opportunities for her to say goodbye,” said Bassett. “Instead, her death experience was chaotic, filled with hospitalizations, symptoms that were not well managed and a change in her personality from calm to aggressive.” Bassett would have liked more frequent help figuring out her friend’s goals and preferences regarding her life and her treatment. “She was capable of high-­‐level thinking,” she said, “but was without someone to facilitate discussions of realistic outcomes.” She had three messages for health care providers: 1. You play an important role in helping patients identify and clarify their goals and values for treatment. 2. Have open and honest conversations. Talking about prognosis is not the same as giving up hope. 3. Palliative care is an active approach to treatment. Put it on the table. 1
Bertakis, K D, Azari, R, Patient-­‐Centered Care is Associated with Decreased Health Care Utilization. J Am Board Fam Med 2011 1:24:229-­‐239, http://www.jabfm.org/content/24/3/229.full.pdf Shared Decision-­‐Making in the Real World Page 8 “Missing Opportunities for Shared Decision-­‐Making” -­‐ Susan Nelsen’s Story Susan Nelsen attributed her foot drop, migraines and mood swings to her pregnancy, but she couldn’t overlook the grand mal seizure she experienced while carving pumpkins with her daughters. From the beginning, she said doctors began making health care choices for her, not including either Nelsen or her husband in the process. Today, she is a firm believer in Shared Decision-­‐Making. Following an emergency C-­‐section to ensure the health of her unborn baby, Nelsen had a brain biopsy and was told she had either a rare form of multiple sclerosis or a brain tumor. She was terrified and worried about caring for a premature baby. While rocking her newborn in the hospital, she fell asleep in the chair, prompting a nurse to ask if Nelsen wanted to talk with a social worker about getting some help at home. “This was the first time anyone brought up getting help,” she said, “even though there had been many other opportunities for Shared Decision-­‐Making.” Nelsen’s journey was just beginning. Someone in her physician’s office called to say that the biopsy showed she had multiple sclerosis, but a follow-­‐up call revealed that a second brain biopsy was needed to make a definitive diagnosis. The second biopsy revealed that she did have brain cancer – anaplastic astrocytoma grade III. While the diagnosis itself was frightening, Nelsen also worried about caring for her four children. “My doctor said it was his job to save my life, and he didn’t really care that I had four children,” she said. “So I talked more to the nurses. They didn’t put up that wall.” “Everything happened so quickly, I don’t remember feeling that I had any options,” she said. “I was told I would die without chemotherapy.” After 12 rounds of chemotherapy, Nelsen’s tumors have not grown, but she still wonders what her options might have been. Based on her experiences, Nelsen has recommendations for health care organizations: 1. Try to involve a patient’s support system as much as possible. 2. When discussing treatment options, consider how they will impact the patient and the family. Who will be able to help the patient? 3. Don’t let your own belief systems affect choices you offer. 4. Use the teach-­‐back method. Ask the patient to repeat the options to ensure that they are understood. 5. Don’t be afraid to be honest. Nelsen had to ask her nurse practitioner about her life expectancy. 6. Provide more resources and advocacy. 7. Improve communication between the family practice physician and the specialist. Shared Decision-­‐Making in the Real World Page 9 “Feeling Part of the Decision Making Process” -­‐ Sharon Rothgeb’s Story Sharon Rothgeb was diagnosed with lung cancer following a pre-­‐operative chest x-­‐ray for knee surgery. Her medical journey included Shared Decision-­‐Making at various stages of treatment, and she feels that contributed to her satisfaction with her care. Rothgeb and her surgeon discussed her diagnosis, prognosis, surgery and treatment options. Then, she and her husband met with a clinical nurse specialist (CNS), who provided additional education and support. Together, they evaluated Rothgeb’s physical concerns, including her recovery from knee surgery and what she might expect from the lung surgery. They also talked about her emotional concerns, including her fear of death. The CNS located community resources and helped Rothgeb identify her support system. They also talked about a health care directive. After surgery, Rothgeb met with her oncologist and her surgeon to discuss her prognosis and the role of chemotherapy to decrease the risk of recurrence. Formal visits with the CNS helped Rothgeb share in the decision-­‐making along the way, enabling her to face her “new normal.” After experiencing several side effects from the maintenance therapy, she talked with her physician about palliative care to manage her symptoms. She was referred to a complementary therapy center, where she received guided imagery and massage and was offered counseling to counteract the side effects of her treatment. In Rothgeb’s case, the Shared Decision-­‐Making approach improved communication between patient and physician, between patient and nurse, and between patient and family. Early interventions were helpful and saved hospital readmissions. In the end, patient satisfaction was increased. ”I felt like part of the decision-­‐making process,” said Rothgeb. “The survivorship program helped me regain my mental health, and that led to my physical recovery.” Conclusion ICSI embarked on a journey to explore how best to enhance patient-­‐centered care by engaging patients in Shared Decision-­‐Making about palliative care. This exploration revealed some pivotal insights, first and foremost that even the process of initiating conversations about health care decisions requires kick starting. The Collaborative Conversation model developed for this project accomplishes exactly that. The locations that fully embraced this model represent a broad range of care delivery models: an in-­‐patient unit, a private practice ambulatory specialty clinic, and a large integrated system. Each location determined how best to integrate the model into their usual care. Increases in patient centeredness, care team cohesiveness and patient and provider satisfaction were universal. One unexpected benefit of this project occurred precisely because of patient involvement. A version of the Collaborative Conversation Map presented to the ICSI Patient Advisory Council Shared Decision-­‐Making in the Real World Page 10 (PAC) elicited edits that transformed it from a provider-­‐facing tool into one that is equally valid for patients. The use of the Collaborative Conversation Map by both patients and providers is a concrete manifestation of the mirrored approach inherent in the philosophical partnering of the patient and the provider. Piloting and integrating the Collaborative Conversation model into usual care has accomplished the aims of this project – to develop tools in collaboration with patients, improve patient centeredness, enhance the flow of information between patients and providers, and honor patients’ values and preferences in making choices between evidence-­‐based options. Shared Decision-­‐Making in the Real World Page 11 APPENDIX Illustration 1 Because palliative care is underutilized or used at the last minute, it can result in uncoordinated episodic care that may include 911 calls, visits to the Emergency Department and exacerbation of a patient’s symptoms. Illustration 2 Shared Decision-­‐Making in the Real World Page 12 The goal is to provide coordinated care with parallel processes that include Shared Decision-­‐
Making. Illustration 3 This diagram illustrates cues that a care team should consider, as well as the patient and family needs, in the context of the Collaborative Conversation. Shared Decision-­‐Making in the Real World Page 13