3

Patient-Centered Communication and Shared Decision Making

The committee’s conceptual framework for a high-quality cancer care delivery system highlights the critical importance of engaged patients. Patients are at the center of the framework (see Figure S-2), which conveys the most important goal of a high-quality cancer care delivery system: meeting the needs of patients with cancer and their families. Such a system should support all patients and families in making informed health care decisions that are consistent with their needs, values, and preferences. This will require a delivery system and workforce oriented to the provision of patient-centered care, defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40). Patient-centered care includes fostering good communication between patients and their cancer care team; developing and disseminating evidence-based information to inform patients, caregivers, and the cancer care team about treatment options; and practicing shared decision making. Although patient-centered communication and shared decision making were not a major focus of the Institute of Medicine’s (IOM’s) Ensuring Quality Cancer Care report (IOM and NRC, 1999), several concepts from that report are relevant to the committee’s recommendations on both topics: the importance of developing a cancer care plan; managing pain, other symptoms, and side effects; as well as the timely referral to hospice care at the end of life.

Currently, patient-centered communication and shared decision making in oncology are suboptimal (Aiello Bowles et al., 2008; Ayanian et al., 2005, 2010; Wagner et al., 2010). In a study of 1,057 patient encounters with



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3 Patient-Centered Communication and Shared Decision Making T he committee’s conceptual framework for a high-quality cancer care delivery system highlights the critical importance of engaged patients. Patients are at the center of the framework (see Figure S-2), which conveys the most important goal of a high-quality cancer care delivery system: meeting the needs of patients with cancer and their families. Such a system should support all patients and families in mak- ing informed health care decisions that are consistent with their needs, values, and preferences. This will require a delivery system and workforce oriented to the provision of patient-centered care, defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical deci- sions” (IOM, 2001, p. 40). Patient-centered care includes fostering good communication between patients and their cancer care team; developing and disseminating evidence-based information to inform patients, care- givers, and the cancer care team about treatment options; and practicing shared decision making. Although patient-centered communication and shared decision making were not a major focus of the Institute of Medi- cine’s (IOM’s) Ensuring Quality Cancer Care report (IOM and NRC, 1999), several concepts from that report are relevant to the committee’s recom- mendations on both topics: the importance of developing a cancer care plan; managing pain, other symptoms, and side effects; as well as the timely referral to hospice care at the end of life. Currently, patient-centered communication and shared decision mak- ing in oncology are suboptimal (Aiello Bowles et al., 2008; Ayanian et al., 2005, 2010; Wagner et al., 2010). In a study of 1,057 patient encounters with 91

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92 DELIVERING HIGH-QUALITY CANCER CARE 3,552 clinical decisions, only 9 percent resulted in what was defined as an informed medical decision (Braddock et al., 1999). More recently, studies have found that clinicians ask for patient preferences in medical decisions only about half the time (Lee et al., 2012; Zikmund-Fisher et al., 2010). A number of obstacles prevent patient-centered communication and shared decision making among patients, their family, caregivers, and the can- cer care team. The emotional, financial, and logistical repercussions of a cancer diagnosis and the complexity of treatment options, together with patients’ limitations in health literacy and lack of experience with the health care system, can make it difficult for patients and their families to actively engage in making health care decisions. The current reimburse- ment system does not incentivize clinicians to engage in patient-centered communication and shared decision making. In addition, clinicians often lack training in communication, leading to difficulties in recognizing and responding to patients’ informational and emotional needs. A lack of understandable and easily available information on prognosis, treatment options, likelihood of treatment responses, palliative care, psychosocial support, and the costs of cancer care contribute to communication prob- lems, which are exacerbated in patients with advanced cancer.1 This chapter describes the benefits, challenges, and characteristics of patient-centered communication and shared decision making; pres- ents approaches and tools to facilitate patient-centered communication and shared decision making; and discusses the importance of advance care planning, the provision of palliative care and psychosocial support across the cancer continuum, and timely referral to hospice when pa- tients near the end of life. The evidence base for this chapter is primarily derived from the National Cancer Policy Forum’s workshop summaries on Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care, Assessing and Improving Value in Cancer Care, and Deliver- ing Affordable Cancer Care in the 21st Century, and the National Cancer Institute’s (NCI’s) monograph Patient-Centered Communication in Cancer Care (Epstein and Street, 2007; IOM, 2009a, 2011b, 2013). The committee identifies two recommendations to improve patient-centered communica- tion and shared decision making. Defining Patient-Centered Communication and Shared Decision Making The concept of patient-centeredness as an important attribute of high-quality health care gained national prominence with the IOM report 1  Cancer that has spread to other places in the body and usually cannot be cured or con- trolled with treatment (NCI, 2013b).

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PATIENT-CENTERED COMMUNICATION 93 Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001). The IOM defines patient-centeredness as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40).2 Over time, other organizations and individuals have elaborated on the attributes of patient-centered care (Bechtel and Ness, 2010; Berwick, 2009; Epstein et al., 2010; Picker Institute, 2013). In the can- cer setting, some of the attributes of patient-centered care highlighted at an IOM National Cancer Policy Forum workshop included (IOM, 2011a) • patient education and empowerment; • patient-centered communication, which involves the patient, fam- ily, and friends; explains treatment options; and includes patients in treatment decisions to reflect patients’ values, preferences, and needs; • coordination and integration of care; and • provision of emotional support as needed, such as relieving fear and anxiety and addressing mental health issues. Effective patient-clinician communication and shared decision mak- ing are key components of patient-centered care. These components require that informed, activated, and participatory patients and family members interact with a patient-centered care team that has effective com- munication skills and is supported by an accessible, well-organized, and responsive health care system (see Figure 3-1) (Epstein and Street, 2007). As described by the NCI’s monograph Patient-Centered Communication in Cancer Care, the primary functions of patient-centered communication are to (1) foster healing relationships, (2) exchange information, (3) respond to emotions, (4) manage uncertainty, (5) make decisions, and (6) enable patient self-management (see Table 3-1) (Epstein and Street, 2007). These six functions dynamically interact to influence the quality of patient-clini- cian interactions and may ultimately influence patients’ health outcomes (Epstein and Street, 2007). They are skills that need to be developed, uti- lized, and maintained across the cancer care continuum. Sepucha and colleagues (2004, p. 57) argued that the “quality of a clinical decision, or its patient-centeredness, is the extent to which it reflects the considered needs, values, and expressed preferences of a well-informed patient and is thus implemented.” Rather than relying on clinician-directed decision making, over the past few decades patients 2  Needs generally refer to a patient’s physical or emotional requirements. Values and preferences represent a patient’s concerns, expectations, and choices regarding health care, based on a full and accurate understanding of care options (adapted from IOM, 2001, 2003).

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94 DELIVERING HIGH-QUALITY CANCER CARE Patient-Centered Care Informed, activated, Accessible, well- participatory patient organized, responsive and family health care system Patient-centered clinicians with good communication skills Improved Communication Improved Health Outcomes FIGURE 3-1  Model of patient-centered care. The patient, clinicians, and health care system dynamically interact to influence patient-centered care. The delivery of patient-centered care has the potential to improve communication and health outcomes. SOURCE: Adapted from Epstein and Street, 2007. Figure 3-1 R02518 have individually and collectively pushed for a greater role in medical decision making (Clancy, 2008) (see Figure 3-2). Health researchers, advo- vector editable cacy organizations, and the Agency for Healthcare Research and Quality (AHRQ) have also encouraged patients to play a larger role in making medical decisions. Research indicates that when patients are involved in their own care, they are more satisfied with the care they receive and

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PATIENT-CENTERED COMMUNICATION 95 TABLE 3-1  Important Functions of Patient-Clinician Communication Function Description Fostering Healing Developing a patient-clinician relationship that is characterized Relationships by trust and rapport is critical to patient-centered communication and shared decision making. This involves mutual understanding of patient and clinician roles, as well as clinician self-awareness and provision of emotional support, guidance, and understanding. Exchanging The cancer care team should ascertain patients’ informational Information needs. Conveying information to patients can be facilitated through the ask-tell-ask method, an approach described in the section on prioritizing clinician training in communication. The exchange includes the cancer care team’s provision of accurate prognostic information and treatment options, realistic expectations for response to treatment, and the cost of cancer care to inform patients’ decisions. Responding to The cancer care team should recognize and respond to patients’ Emotions emotions, which involves verbally expressing understanding, legitimizing feelings, and providing empathy and support. This also includes the development of a psychosocial care plan and linking patients to psychosocial care if they experience high levels of emotional distress, anxiety, and depressive symptoms. Managing Clinicians play an important role in reducing and managing Uncertainty the uncertainty associated with cancer care. This can include cognitive-behavioral interventions to help patients cope with this uncertainty and, if possible, improve understanding. Making Shared decision making involves three processes—information Decisions exchange, deliberation, and reaching a final decision. A patient’s decision often extends beyond medical issues, and includes factors such as finances and the expense of treatment, and impact on employment and family. The logistics of scheduling and receiving cancer treatment can be an enormous strain for patients, families, and caregivers; disrupt family life; and require negotiations with employers for time off or flexible work schedules. Enabling Patient The cancer care team should provide individuals with Self-Management resources to be proactive in their care. Examples of self- management tools and enablers include cancer care plans, survivorship care plans, and patient navigators who assist patients to overcome health care system barriers and facilitate timely access to health care services. SOURCES: C-Change, 2005; Epstein and Street, 2007; Lauria et al., 2001.

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96 DELIVERING HIGH-QUALITY CANCER CARE I want my health care clinician... To listen to me To tell me the full truth about my diagnosis, even though it may be uncomfortable or unpleasant To tell me about the risks associated with each option To explain how the options may impact my quality of life To understand my goals and concerns regarding the options To help me understand how much each option will cost me and my family To offer me choices of options To always discuss the option of choosing no test or treatment To offer only the options that he or she feels are right for me 0% 20% 40% 60% 80% 100% Percent of People Who Strongly Agree FIGURE 3-2  People want to be involved in understanding evidence and making Figure 3-2_R02518.eps decisions about their care. The IOM landscape a nationally representative sample surveyed of 1,068 U.S. adults who had seen at least one health care clinician in the previous year. The majority of adults strongly agreed that they should be actively involved in understanding and making decisions about their care. SOURCE: Alston et al., 2012. often experience better health outcomes (Alston et al., 2012; CFAH, 2010; Hibbard and Greene, 2013; Lantz et al., 2005; Maurer et al., 2012; Roseman et al., 2013). Thus, shared decision making is a critical feature of patient- centered communication, and is defined as “the process of negotiation by which physicians and patients arrive at a specific course of action, based on a common understanding of the goals of treatment, the risks and benefits of the chosen treatment versus reasonable alternatives, and each other’s values and preferences” (IOM, 2011a, p. 8; adapted from Sheridan et al., 2004). Patients with cancer and their families are often required to manage greater portions of their cancer care due to advances in cancer treat- ment, as well as changes in the practice of health care, such as earlier discharge from the hospital (CFAH, 2010; McCorkle et al., 2011). These duties may include drug management, wound care, rehabilitation, and lifestyle changes (CFAH, 2010). Clinicians help patients engage in self- management, which involves managing the medical and psychological aspects of cancer care, as well as adapting to changes in roles that result from cancer diagnosis (McCorkle et al., 2011). Promoting patient self-man- agement can facilitate shared decision making and improve cancer care.

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PATIENT-CENTERED COMMUNICATION 97 The Importance of Patient-Centered Communication and Shared Decision Making in Cancer A number of factors related to cancer care necessitate a patient-cen- tered approach to communication: (1) cancer care is extremely complex and patients’ treatment choices have serious implications for their health outcomes and quality of life; (2) the evidence supporting many decisions in cancer care is limited or incomplete; and (3) trade-offs in the risks and benefits of cancer treatment choices may be weighed differently by individual patients, and clinicians need to elicit patient needs, values, and preferences in these circumstances. Each of these factors is discussed below. Complexity of Cancer Care Cancer care is complex. It may involve multiple treatment modalities, including chemotherapy, radiation, and surgery, all of which need to be coordinated among different cancer care specialists. Treatment regimens can also be time intensive, debilitating, and often result in serious and sometimes long-term complications (IOM, 2011a). In addition, patients must often choose from multiple cancer treatment options, requiring pa- tients and their families to decide on the goals of treatment (e.g., prioritiz- ing survival time vs. maximizing quality of life), whether to participate in clinical trials, and to weigh evidence of the risks and benefits of different treatment approaches. These decisions often need to be revisited at vari- ous points along the cancer care continuum. A patient’s goals or prefer- ences at the time of initial diagnosis, for example, may be very different from a patient who has advanced cancer. Limitations in the Evidence Base As described in Chapter 5, the committee recommends that research- ers improve the breadth and depth of information collected in clinical research. Studies indicate that there is a lack of evidence to support many medical decisions (El Dib et al., 2007; IOM, 2008b, 2012; Villas Boas et al., 2012). Evidence supporting patients’ medical decisions can be especially limited for older adults and individuals with comorbidities, as these individuals are often underrepresented or excluded from clinical trials (IOM, 2009b, 2010). While comparative effectiveness research (CER) and learning health care systems aim to fill these evidence gaps, they have limitations. Clinicians should fully communicate gaps in the evidence base to their patients during the medical decision-making process. When

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98 DELIVERING HIGH-QUALITY CANCER CARE evidence is sparse, patient preferences should be a particularly important consideration in the health care decision-making process. Preference-Sensitive Decisions Some decisions in cancer care are particularly sensitive to patient preferences. For example, women with breast cancer can often choose from different courses of treatment—mastectomy versus lumpectomy followed by radiation—and expect equivalent survival outcomes (Fisher et al., 2002). Women may choose mastectomy, or the removal of the entire breast, for peace of mind or to avoid radiation therapy, while women who choose lumpectomy followed by radiation may do so to conserve their breasts (Collins et al., 2009). Women with BRCA 1 and 2 gene mutations are at higher risk for developing breast and ovarian cancer, and may face difficult decisions about breast cancer screening, as well as consid- eration of prophylactic mastectomy or oophorectomy to reduce the risk of cancer3 (Jolie, 2013; Schwartz et al., 2009). These decisions can have a major impact on an individual’s future. Thus, patients’ preferences need to inform medical decisions. Patients’ preferences are also particularly important when they consider their treatment goals, such as choosing a less aggressive treatment strategy in order to maintain a high quality of life (Berman, 2012; Epstein and Street, 2007; Gruman, 2013). Preferences may also change over time and clinicians need to revisit these throughout the cancer care continuum. For example, women considering second line chemotherapy may prefer to take a more active role in decision mak- ing compared to women who are considering first line chemotherapy (Grunfeld et al., 2006). Challenges to Patient-Centered Communication and Shared Decision Making in Cancer There are a number of challenges to patient-centered communication and shared decision making. This section discusses patient, clinician, and health care system challenges. Challenges for Patients A cancer diagnosis can lead to a state of crisis for an individual and his or her family because most people are not immediately equipped to understand their diagnosis or how to identify options for moving forward (NCCS, 2012a). Because treatment and its side effects, as well as recovery 3  Oophrectomy is surgery to remove one or both ovaries (NCI, 2013b).

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PATIENT-CENTERED COMMUNICATION 99 and the worry about recurrence, can result in a series of crises for a pa- tient, the crisis does not end once the shock of initial diagnosis wears off (NCCS, 2012a). The emotional repercussions of a cancer diagnosis can prevent pa- tients from engaging in effective communication with their clinicians about their diagnosis and treatment. Patients can become anxious; feel vulnerable, alone, and fearful; and experience feelings of losing control when receiving a cancer diagnosis. Given these emotions, patients may be unable to retain important information regarding their treatment when speaking with their care team (IOM, 2011a). Patients’ lack of assertiveness may also create communication chal- lenges. Ideally, patients are active communicators, asking questions, as- sertively stating their opinions, introducing new topics of conversation, and discussing their concerns, feelings, or preferences when communi- cating with their clinicians (Epstein and Street, 2007). Patients’ lack of experience with the health care delivery system and illness, however, can impede their active participation (IOM, 2011a). Research indicates that the average patient asks five or fewer ques- tions during a 15-minute doctor’s visit (IOM, 2008a), and an AHRQ public service announcement noted that people ask more questions when buying a cell phone or ordering a meal than they do during medical appoint- ments. Patients may refrain from asking questions because some clini- cians are not receptive or because patients fear they will be considered difficult and receive worse care (Frosch et al., 2012; Gruman, 2013). Patients who only participate in their care on a limited basis risk poor health outcomes because they may fail to express their needs, fears, expectations, and preferences, which are important to their health care decisions. These patients may also feel dissatisfied when interacting with their clinicians (Epstein and Street, 2007), a problem exacerbated by pa- tients’ awe of their clinicians or lack of self-confidence (Hoffman, 2004). Older adults may be more reluctant to question their clinicians’ authority because they may think it is impolite or inappropriate to ask questions or make decisions about their own care (Busari, 2013; Hoffman, 2004; IOM, 2008a). Research has also linked patients’ level of participation in clinical encounters with their level of education, ethnicity, gender, personality, and the orientation of patient-clinician relationships (shared control ver- sus physician control) (Epstein and Street, 2007). Box 3-1 lists a number of questions that patients with cancer can discuss with their clinicians. In addition, a patient’s level of health literacy and numeracy can af- fect patient-centered communication and shared decision making (Peters et al., 2007). More than 90 million adults in the United States have poor reading and writing skills and only 38 percent of high school seniors are proficient in reading (Kutner et al., 2007; NAEP, 2010; NRC, 2012).

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100 DELIVERING HIGH-QUALITY CANCER CARE BOX 3-1 Questions That Patients with Cancer Can Discuss with Their Clinicians Questions About Prognosis •  hat is the goal of treatment? Is it directly treating the cancer or improving W my symptoms, or both? •  ow long does the average person with this cancer live? (ask for a window H and the most likely scenario) • How will I feel? • What is my likelihood of a cure? • If I cannot be cured, will I live longer with treatment? How much longer? • Will I feel better or worse? •  an I receive palliative care focused on maintaining the quality of my and C my family’s life during my cancer treatment? • What options do I have if I don’t want to continue my cancer treatment? •  hen should I think about hospice? Can I meet with hospice now, when I W am well? • How often should we check in about my care plan? Questions About Treatment • What are my treatment options? • Why do I need this treatment? • How does this treatment compare with other treatment options? • What things are likely to happen to me? • Am I healthy enough to undergo the treatment? • What are the risks and benefits of treatment? • Are there any side effects? Furthermore, many individuals have inadequate health literacy, which is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (IOM, 2004a, p. 32; Ratzan and Parker, 2000). AHRQ estimated that 36 percent of the adult population, or approximately 80 million individuals, have poor health literacy, with low health literacy more prevalent in certain subgroups, including older adults, racial and ethnic minority populations, adults who spoke a lan- guage other than English prior to starting school, individuals who have not completed high school, and people living in poverty (Berkman et al., 2011). Poor health literacy can hinder patients’ ability to receive health care, including their ability to communicate with their clinicians and man-

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PATIENT-CENTERED COMMUNICATION 101 • Will treatment make me feel better or worse? • How many times have you done this procedure? • What is the cost of this treatment? • What clinical trials are available? o What are the potential benefits of clinical trials? o Am I eligible to participate? o How do I enroll? • Which hospital is best for my needs? • Which clinician(s) will coordinate my care? • How do you spell the name of that drug? • Will this medicine interact with medicines that I’m already taking? Questions About Advance Care Planning • Are there things I should be doing to plan ahead? o Draft a will? o  articipate in advance care planning and decide on my advance P directives? o Choose a health care proxy who can speak for me if I am unable? o Address financial or family legal issues? o Appoint a durable power of attorney for financial affairs? o Write notes or create DVDs for loved ones? Questions About Family, Psychosocial, and Spiritual Needs • Will you help me talk with my children? • Who is available to help me cope with this situation? SOURCES: Adapted from AHRQ, 2013b; ASCO and Cancer.Net, 2012; Harrington and Smith, 2008. age chronic illnesses (IOM, 2011b). Poor health literacy is associated with increased hospitalizations, greater use of emergency room services, and lower probability of receiving preventive care (Berkman et al., 2011). Poor health literacy is especially concerning for older adults, as Berkman and colleagues (2011) found that lower health literacy in this group was as- sociated with a higher risk of mortality and a worse overall health status. Even if a patient has good health literacy, he or she may experience information overload when interacting with clinicians, which can be exac- erbated by clinicians’ use of unfamiliar terminology or jargon (Hoffman, 2004; IOM, 2011a). Patients may not retain important information if they feel overwhelmed with new terminology while grappling with all of the information clinicians are trying to impart. Moreover, patients have very

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