Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care

A National Coalition for Cancer Survivorship and Institute of Medicine Workshop

INTRODUCTION AND OVERVIEW

Each year about 1.5 million people are diagnosed with cancer in the United States (ACS, 2010), and must then decide on a course of care. Cancer treatment often involves multiple options and specialties; it can be toxic, costly, intense, and protracted and may involve serious long-term complications. In addition, responses to cancer treatments are quite variable, so predicting the potential risks and benefits of various treatment options for individual patients is often difficult. Because of the complexity of treatment choices, coupled with the life-threatening nature of cancer and its emotional repercussions, it is often difficult for people with cancer to make decisions about their care. The fragmented nature of the cancer care system (IOM, 1999) also presents challenges that may impede coordinated care and the development of comprehensive treatment plans.

Recognizing these challenges, the National Coalition for Cancer Survivorship (NCCS)and the National Cancer Policy Forum (NCPF) of the Institute of Medicine hosted a public workshop in Washington, DC, on February 28 and March 1, 2011, titled Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care. The workshop agenda, which includes speakers and their affiliations, can be found in the appendix. This document is a summary of the workshop. The views expressed in this summary are those of the speakers and discussants, as attributed to them,



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Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care A National Coalition for Cancer Survivorship and Institute of Medicine Workshop INTRODUCTION AND OVERVIEW Each year about 1.5 million people are diagnosed with cancer in the United States (ACS, 2010), and must then decide on a course of care. Can- cer treatment often involves multiple options and specialties; it can be toxic, costly, intense, and protracted and may involve serious long-term compli- cations. In addition, responses to cancer treatments are quite variable, so predicting the potential risks and benefits of various treatment options for individual patients is often difficult. Because of the complexity of treatment choices, coupled with the life-threatening nature of cancer and its emotional repercussions, it is often difficult for people with cancer to make decisions about their care. The fragmented nature of the cancer care system (IOM, 1999) also presents challenges that may impede coordinated care and the development of comprehensive treatment plans. Recognizing these challenges, the National Coalition for Cancer Sur- vivorship (NCCS) and the National Cancer Policy Forum (NCPF) of the Institute of Medicine hosted a public workshop in Washington, DC, on February 28 and March 1, 2011, titled Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care. The workshop agenda, which includes speakers and their affiliations, can be found in the appendix. This document is a summary of the workshop. The views expressed in this summary are those of the speakers and discussants, as attributed to them, 1

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2 PATIENT-CENTERED CANCER TREATMENT PLANNING and are not the consensus views of the workshop participants or members of the National Cancer Policy Forum. The workshop included an overview of patient-centered care and cancer treatment planning, as well as sessions on shared decision making, communication in the cancer care setting, and patient experiences with cancer treatment. Best practices, models of treatment planning, and tools to facilitate their use were also discussed, as well as policy changes that may promote patient-centeredness by enhancing patients’ understanding of and commitment to the goals of treatment through a shared decision- making process with their healthcare team from the moment of diagnosis onward. While previous Institute of Medicine (IOM) work has focused on the challenges of cancer care planning for individuals who have completed their treatment (sometimes referred to as follow-up or survivorship care planning), this workshop focused on treatment planning for patients with cancer at the time of diagnosis. Patient-centered care has been defined as “providing care that is respect- ful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (IOM, 2001). A primary goal of patient-centered treatment planning is to engage patients and their families in meaningful and thorough interactions with their healthcare providers to develop an accurate, well-conceived treatment plan, using all available medical information appropriately while also considering the medical, social, and cultural needs and desires of the patient and family. A treatment plan may entail a prognostic and therapeutic plan at the time of initial diagnosis, which can be updated with changes during the course of treatment, as well as a prognostic and palliative care plan near the end of life. Participants at the workshop identified numerous obstacles to achiev- ing patient-centered care planning in practice, including variable and often suboptimal communication between the patient and healthcare provider that may not be culturally or personally appropriate, and information over- load for the patient and family, without appropriate written documentation of treatment plans, options, and expectations that the patient and family might refer to after a visit. Many participants also lamented the frequent lack of involvement of primary care physicians and provider teams who might know patient and family better. Numerous factors that might con- tribute to that lack of involvement were noted, including poor coordination of care or inappropriate exclusion by the oncology team, the inability of primary care physicians to devote the time needed to keep up with myriad complex and rapidly changing cancer treatment regimens, and the lack of

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3 IMPROVING THE QUALITY OF ONCOLOGY CARE availability of primary care physicians due to workforce shortages. Other obstacles to care planning identified by workshop participants included the increasingly complex medical data that healthcare providers need to consider when making treatment decisions, and a lack of decision support for healthcare providers (for example, in electronic health records) to aid in managing the complexity of medical information. In addition, the current reimbursement system for health care does not compensate providers for the time it takes to develop, discuss, and document a treatment plan. Workshop participants also suggested a variety of mitigation strategies to address these many obstacles, including improved training of physicians, nurses, and other healthcare providers in the components of optimal com- munication with patients and families, and improved education of patients and families about how to be more proactive and assertive to optimize interactions with healthcare providers. Many participants advocated for greater use of support services, such as mental health services, social work, and nutrition counseling, as well as greater involvement of patient naviga- tors who can help coordinate cancer care and foster communication among providers. However, others argued that the need for patient navigators is a symptom of a broken system, and strongly advocated for more structural, systemic reforms in cancer care. For example, many participants emphasized a need to change the reimbursement and financial incentives in the system to encourage and support more patient-centered care. They also stressed that greater use of quality improvement programs and accountable care systems could have a positive impact on the care provided to patients with cancer. A variety of tools and online resources were also cited as potential means to improve care planning, such as electronic health records that can organize all important medical information, share it with all members of the healthcare team, utilize decision support to better ensure optimal treatment recommendations for patients, and facilitate electronic input from patients into their healthcare records. WHY PATIENT-CENTERED PLANNING FOR CANCER? Cancer takes patients on a journey most have never taken before, whose outcomes are unknown. This creates uncertainty and anxiety, especially given the potential life-threatening nature of the disease, as several patients and providers noted at the workshop. Mr. Richard Boyajian, a cancer survivor and clinical director and primary nurse practitioner of the Adult Survivorship Program at Dana-Farber Cancer Institute, said that fear of the

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4 PATIENT-CENTERED CANCER TREATMENT PLANNING unknown was a major issue for him when he was a leukemia patient and that a cancer treatment plan helped alleviate that fear. “The idea of having some sense of the roadmap, of where this journey is going to take you, is really important,” added Mr. Mark Gorman, a cancer survivor and director of Survivorship Policy at NCCS. “It’s critical to manage uncertainty.” A cancer treatment plan can provide that roadmap, even in the final stages of cancer when treatment might only be palliative (to address symp- toms), stressed Dr. Patricia Ganz, professor of health services and medicine at the University of California, Los Angeles, and director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center. “Patients want to know what’s going to happen to them. That’s why we have to do this,” she said. Ms. Alison Smith, vice president for strategic initiatives at C-Change, added that “pilots don’t take off with- out a flight pattern, and architects don’t break ground without a blueprint. Patients diagnosed with cancer are taking the journey of their life, literally, so the role of the cancer treatment plan in starting a conversation, in pro- moting comprehension and retention, in managing expectations and anxi- ety, and providing continuity across settings and episodes is so important.” Cancer care also has a number of unique attributes that make treatment planning vital. Dr. Ganz noted that cancer treatments can be complex, toxic, intense, expensive, disruptive, life-threatening, and protracted, with the possibility of cancer recurrence or late complications, and thus requiring lifelong surveillance. In addition, patients often have to choose between sev- eral treatment options, each with its own set of potential risks and benefits. Cancer care also usually involves multiple practitioners and can occur in isolation from primary healthcare delivery, with physicians whom patients usually have not known for long. Given the complexity of cancer care, a written cancer treatment plan is critical, noted Dr. Karen Sepucha, director of the Health Decision Sci- ences Center at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School. “It is unfathomable the lack of documentation and what’s supposed to be kept in your head versus the limits of cognition. There is an approach in human factors engineering in which you design your system so that humans can work in it and not fail. We haven’t really translated that well into health care, so we’re setting ourselves up for failure all the time, for missing the handoffs,” she said. Dr. Lawrence Shulman, chief medical officer, senior vice president for medi- cal affairs, and chief of the Division of General Oncology at Dana-Farber Cancer Institute, added that cancer treatment plans are likely to become

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5 IMPROVING THE QUALITY OF ONCOLOGY CARE increasingly important as the growing complexity of cancer care becomes a challenge for providers. Cancer treatment planning is especially important because a patient’s survival can hinge on making the correct treatment decision. “When you are making these important decisions, if [a doctor makes] the wrong decision, the next day the doctor gets to try again with a new patient,” said Ms. Anne Willis, cancer survivor and director of Survivorship Programs for NCCS. “The patient doesn’t have that option. [Patients] only have one chance to get it right.” PATIENT-CENTERED CANCER CARE The 2001 IOM consensus report Crossing the Quality Chasm: A New Health System for the 21st Century defines patient-centered care 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). Most speakers at the workshop indicated that when patient-centered care is given, there is a partnership between a patient and his or her providers. To enable this partnership, communication must be sensitive to the needs and capabilities of the patient so that the patient is informed about his or her treatment options and encouraged to share in the decision making about care. Patient-centered care may also involve patient navigators, social work- ers, or other personnel to help patients coordinate their care and relieve their health-related burdens, including psychosocial issues such as anxiety or financial stress. As one patient who spoke at the workshop summarized it, patient-centered care is having the health system organized around the patient rather than the patient having to organize his or her life around the system. The key components of patient-centered care stressed at the workshop were the following: • atient education and empowerment P • atient-centered communication, involving the patient, family, and P friends, that explains treatment options and includes patients in treatment decisions to reflect patients’ values, preferences, and needs • oordination and integration of care C • rovision of emotional support as needed, such as relieving fear and P anxiety and addressing mental health issues

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6 PATIENT-CENTERED CANCER TREATMENT PLANNING Patient Education Oncologists and other cancer healthcare providers typically provide some information to their patients about their diagnosis, stage, and treat- ment options. Yet, as several speakers at the workshop noted, patients also want to know the likely outcomes and side effects of each potential treatment, including long-term outcomes and risks of cancer recurrence, if known. They also want to know the signs of recurrence so that they don’t worry unnecessarily. Many cancer treatments may also reduce fertility; thus, ways to preserve fertility should also be discussed with patients in advance of treatment when appropriate, several speakers said. Research on breast and colon cancer patients and survivors by Dr. Deborah Mayer, associate professor at the University of North Carolina School of Nursing, suggested that patients want both print- and Web-based information, and they want information about their diagnosis at the time they are diagnosed and a treatment plan when they first start their treat- ment. Examples of Web-based tools that can help patients learn more about their diagnosis and treatments options are described in the section on Tools and Resources (p. 29). Cancer patients also would like information on local resources, including support groups, dieticians, physical and mental health therapists, and exercise and health promotion programs. There is variability in the amount of information that patients want to receive about their cancer, several speakers noted. Because of the stress of being diagnosed with cancer, patients may have difficulty processing exces- sive amounts of information, especially complex technical information. Mr. Boyajian suggested providing patients with just the “Cliff Notes”—a concise summary of the most important pieces of information about diag- nosis and treatment—and then referring them to other sources if they want additional information. However, Dr. Ganz stressed the importance of dis- cussing all care options and having both verbal and written communication of those options and of the treatment plan. Several participants suggested recording the consultation a patient has with his or her oncologist in which this information is discussed, so that it can be reviewed later by the patient and family members. Some patients also find it helpful to have a companion present who can take notes during this discussion and help with post-visit translation of care plans and rationale for treatment. It is also helpful if providers put the potential risks and benefits of vari- ous treatment options in a context that patients can understand, pointed out Dr. Sherrie Kaplan, Assistant Vice Chancellor for Healthcare Measure-

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7 IMPROVING THE QUALITY OF ONCOLOGY CARE ment and Evaluation and professor of medicine at the University of Cali- fornia, Irvine. For example, the risk of a rare complication can be given as equivalent to the likelihood of other rare events occurring, such as being struck by lightning, hit by a car, or winning the state lottery. Patient Empowerment Both patients and providers at the workshop noted that people with cancer are expected to take an active role in their care and share in decision making, but few people have experience and training in what Dr. Kaplan termed “planned patienthood.” Although we are much more likely to be patients at some point during our lifetimes than to be in a fire, she pointed out, we are trained for the latter and not the former. Consequently, the aver- age patient asks five or fewer questions during a 15-minute doctor’s office visit, with a high proportion asking no questions (reviewed by IOM, 2008), suggesting that patients generally are not taking an active role in their care. According to the IOM consensus report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2008), poor communication and lack of patient involvement are particularly worrisome because a substantial literature has linked effective patient-clinician communication to positive health outcomes. Thus, Dr. Kaplan stressed that “we need to prepare people on how to be patients.” Patient advocate Mr. Robert Erwin, president of the Marti Nelson Cancer Foundation, concurred that patients often need to be encouraged to take a more active role in their care. He suggested patients learn to see themselves more as clients, which has more active connotations than the term patients. Along those lines, Dr. Ganz added that patients should be aware that they can always “fire” their doctors if they are not doing a good job of taking care of them. Dr. Elizabeth Clark, executive director of the National Association of Social Workers, added that patients’ self-advocacy gives them a better sense of being in control over their own lives, which is important after being given a life-threatening diagnosis, such as cancer. “Self-advocacy can improve quality of life, and it may be the difference that turns feeling hopeless and helpless into feeling hopeful,” she said. Dr. Kaplan noted that effective patient skills include asking focused questions, understanding that options exist, and eliciting all options and their potential risks and benefits. Dr. Kaplan stressed that patients should also be assertive about stating personal preferences and relevant life circum- stances that affect treatment options and should negotiate conflicts with the

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8 PATIENT-CENTERED CANCER TREATMENT PLANNING preferences of their physicians when these arise. Empowered patients can actively participate in shared decision making, an important component of patient-centered care. She defined shared decision making 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” (adapted from Sheridan et al., 2004). Communication Dr. Jessie Gruman, cancer survivor and president of the Center for Advancing Health, pointed out that the National Cancer Institute (NCI) has a monograph that specifies six functions of patient-centered communi- cation (Epstein and Street, 2007): 1. Fostering healing relationships 2. Exchanging information 3. Responding to emotions 4. Managing uncertainty 5. Making decisions 6. Enabling patient self-empowerment Other participants added that patient-centered communication should be sensitive to patients’ • ulnerability; v • egree of education and ability to understand medical terms, con- d cepts, risks, and benefits; • ossible reluctance to assert preferences and ask questions; p • references related to treatment; and p • ultural and spiritual outlook. c Several speakers stressed that provider communication should be simple, concise, and free of acronyms and jargon, which one participant called “oncobabble.” Such communication should be specific to avoid medication errors or inattention to symptoms. For example, Dr. Linda Burhansstipanov, grants director and founder of the Native American Cancer Research Corporation and president of Native American Cancer Initiatives, Inc., pointed out that many patients are told to contact their

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9 IMPROVING THE QUALITY OF ONCOLOGY CARE doctors when they experience excessive bleeding, but they do not know how much is considered excessive. Dr. Carolyn Clancy, director of the Agency for Healthcare Research and Quality (AHRQ), added that patients may overdose on their medications if their doctor tells them to take two a day, without specifying if it is two pills or 2 milligrams they should be taking daily. “You need to translate across different levels of education and literacy, cultural context, age, gender, and many other individual differences,” said Dr. Jeffrey Peppercorn, associate professor of medicine at Duke University and faculty associate of the Trent Center for Bioethics. To ensure that patients understand the information given to them, several participants suggested that they be asked to repeat what they heard, rather than just be asked if they understand. Dr. Clancy recalled an evalua- tion of a diabetes education program led by nurses at an academic medical center primary care clinic that found that although patients would nod politely to indicate they understood the information, questions asked of them a few days later revealed there was little retention of such informa- tion. Dr. Burhansstipanov also suggested repeating the key points of the treatment plan to improve patient retention of the information. Those key points could be repeated in different ways, or given in different formats, she suggested. It is important for providers to solicit patient preferences and not make assumptions about which treatment option and associated side effects patients are more likely to prefer or feel is best for them. Dr. Sepucha pointed out that many providers assume that women with early-stage breast cancer, for whom mastectomy or lumpectomy followed by radiation is equally effective, would prefer not to lose their breast. Yet in a study of breast cancer patients who were provided with comprehensive information about the risks and benefits of mastectomy and lumpectomy, one-third of these informed women chose mastectomy (Collins et al., 2009). “We can’t make assumptions that everybody is going to feel the way that we do, so you have to ask the patient,” she said. Dr. Clancy added that some patients with laryngeal cancer likely prefer having radiation therapy over surgery because although they will not live as long with this treatment, it will preserve their ability to speak and that is more important to them than the length of their life. Providers also have to be sensitive to what patients are saying. “You need to have competencies on both sides,” said Willis. “It’s not enough for me to go to my doctor and communicate my needs. My doctor needs to be able to listen to what I’m saying.” Dr. Anthony Back, professor of medicine

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10 PATIENT-CENTERED CANCER TREATMENT PLANNING at the University of Washington and director of the Program in Cancer Communication at the Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center, noted that one meta-analysis (Venetis et al., 2009) found that when patients are encouraged to participate in conversations with providers and these providers show empathy, the patients are more likely to report being satisfied with their care than when there is more “instrumental talk,” in which the providers merely indicated the tests and treatments they would be having. Dr. Nancy Keating, associate professor of medicine and healthcare policy at Harvard Medical School and general internist at Brigham and Women’s Hospital, conducted a study that found patients with breast cancer who received the degree of input they wanted into decision making about their treatment were more likely to report being satisfied with their treatment choice than those who did not (Keating et al., 2002). Dr. Burhansstipanov, who is part Cherokee and advocates for Native Americans, stressed the importance of being culturally sensitive when communicating with patients of differing ethnicities and cultures. She said misunderstandings often occur when doctors inform their Native American patients that their biopsy is “positive” because the patient often assumes this is good news, otherwise the doctor would not consider it to be positive. Gay and lesbian couples, she added, should not be asked if they have a spouse, but rather if they have a lifetime partner who should be informed of the patient’s medical condition. She also noted that many Native Americans view spirituality as being intertwined with healing and seek traditional healers or spiritual advisers while being treated medically. Physicians need to be sensitive to other religious traditions, as well as the role spirituality plays in heal- ing, Dr. Burhansstipanov said. She added that doctors also have to be cognizant that in some Native American tribes, the mother is the decision maker for her children, even grown children, and thus must be consulted when devising cancer treatment plans. Other speakers stressed the importance of communication with the family or caregivers of the patient as well as with the patient, and recogni- tion that their informational needs are different. For example, family mem- bers need to know how to care for a patient during cancer treatment, how to plan for practical and financial concerns, and how to talk with children about a parent with cancer, Dr. Marie Bakitas, associate professor of anes- thesiology at Dartmouth Medical School, pointed out. Studies show it is also helpful to have family members or other companions with patients at

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11 IMPROVING THE QUALITY OF ONCOLOGY CARE doctor visits to make sure that patient needs, preferences, and questions are conveyed and that the information is being understood. As Dr. Ganz noted, because of the stress of a cancer diagnosis and treatment, a patient may not be able to ask questions and take in what the doctor is saying and a family member or a companion may be more able to do so. One study found that when a companion was present with a patient, significantly more questions were asked than when the patient was alone (Eggly et al., 2006). Dr. Back suggested that physicians should endorse having patients be accompanied by someone other than a family member or friend. This person could take notes, ask questions, and hopefully retain more of what is said than would a family member or friend who is emotionally attached to the patient. Communication with Patients with Advanced Cancer Communication about advanced cancer can be especially challeng- ing. Dr. Peppercorn referred to a statement from the American Society of Clinical Oncology (ASCO) on care for patients who have advanced cancer, and thus a poor prognosis (Peppercorn et al., 2011), specifying that when discussing cancer treatment options with patients, they should be told the relevant pessimistic information as well as optimistic information to best inform their decision making. The policy statement also argues that patients should be told not just the likelihood of a response, but the nature of that response (i.e., whether it will improve symptoms, shrink the cancer, or slow its progression), as well as its costs and toxicity. Although it can be difficult to convey a poor prognosis, some speak- ers stressed the importance of being honest when communicating with patients. Dr. Thomas Smith, professor of medicine and palliative care at the Virginia Commonwealth University Massey Cancer Center, said his stud- ies show that patients expect their physicians to be honest with them and informing patients that they have a fatal illness does not quash their hope or make them depressed. However, Mr. Erwin noted that patients like to hear, and physicians like to give, hopeful information, even when it is false hope. This often leads to an overpromotion of various types of treatments that are not likely to be effective in late-stage cancer. “It’s almost as though we no longer give people permission to die,” he said, “so the end-of-life aspect of cancer care can get lost.” Dr. Smith stressed the importance of conveying to patients in the final stages of cancer that although there may no longer be any effective treat- ment against their cancer, there are still treatments that can improve their

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48 PATIENT-CENTERED CANCER TREATMENT PLANNING Dr. Mayer added that until information technology issues such as pri- vacy and compatibility are addressed, the creation of survivorship care plans will require a laborious effort. “We need to take advantage of the health information technology efforts that are going on in healthcare reform now to create these interfaces that will make doing these things a bit easier,” she said. To ensure the value of survivorship care plans before they are fully implemented, Dr. Mayer suggested identifying and measuring outcomes when the plans are put into practice. “While this is not an evidence-based intervention currently, there is no reason why it can’t be over time,” she said. POLICY OPTIONS TO PROMOTE PATIENT- CENTERED CANCER TREATMENT PLANNING Participants suggested several policy options to promote patient-cen- tered cancer treatment planning, including standards for training, licensure, and practice of providers, financial incentives, research, and healthcare reform. Standards for Training, Licensure, and Practice Several speakers suggested setting standards of care for oncology that include patient-centered treatment planning and communication, and mak- ing these standards part of physician training and licensure. Mr. Boyajian also suggested that standard cancer treatment plan templates be developed on a national level and made freely available to institutions and practices. Dr. Ganz suggested that one standard of care for the initial cancer treatment planning process should be for a multidisciplinary team that uses the best available evidence. The treatment planning process should include the patient and family in decision making, encourage second opinions to validate the initial provider’s recommendations and diagnosis, and organize treatment decisions with a written treatment plan that is communicated to all parties, she added. Dr. Bakitas suggested developing cancer treatment planning guide- lines that make oncology nurse education sessions about cancer treatment explicit and mandatory. Attending to patients’ psychosocial concerns should also be made a standard of patient-centered care, and there should be poli- cies, funding, and training that supports this, stressed Drs. Clark, Partridge, and Hoverman and Ms. Esparza. Currently social workers are not reim- bursed for many of their services to cancer patients, Dr. Smith pointed out.

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49 IMPROVING THE QUALITY OF ONCOLOGY CARE Mr. Gorman added that viewing good physician communication with patients as a skill that can be learned, rather than a trait that is inherited, has led some state medical licensing boards to start to require adequate physi- cian communication in their certification process, especially for internal medicine and its subspecialties. Financial Incentives Financial incentives are also needed to spur implementation of patient- centered cancer treatment planning, according Dr. Ganz. As Dr. Keating noted, “The visit-based reimbursement system that we have in health care doesn’t help us at all because doctors’ schedules are packed, and they don’t have a lot of time.” Dr. Ganz suggested that insurers could incentivize patient-centered care by reimbursing physicians only if they provide the documentation that is involved in creating a patient-centered cancer treatment plan. As she pointed out, insurers already require documentation on a number of items for reimbursement. Dr. Shulman added that one of Massachusetts Blue Cross’s pay-for-performance metrics is the creation of treatment plans. The reasoning for this, he said, is that encouraging more documentation of care can ensure that proper care is being given (for example, obtaining KRAS11 status before administering cetuximab to colon cancer patients). The docu- mentation also enables insurers to be proactive, such as providing nurse navigators when needed to reduce emergency room visits and hospital stays. In an initiative led by the NCCS, patient advocates have lobbied for legislation that would require the Centers for Medicare and Medicaid Ser- vices (CMS) to cover cancer care planning as part of its Medicare program, Ms. Elizabeth Goss, partner at Turner & Goss, LLP, reported. She said there were plans to reintroduce the legislation, called the Comprehensive Cancer Care Improvement Act, to Congress again in 2011. Mr. Erwin also suggested that CMS could pay for a patient-centered care program as part of its coverage with evidence development program.12 11 Kirsten ras, a type of oncogene in which activating mutations play a key role in the progression of some cancers, such as colon cancer. 12 On July 12, 2006, CMS released a guidance document titled National Coverage Determinations with Data Collection as a Condition of Coverage: Coverage with Evidence Development (CED); see https://www.cms.gov/CoverageGenInfo/03_CED.asp (accessed May 12, 2011).

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50 PATIENT-CENTERED CANCER TREATMENT PLANNING Research Many participants said that an integral component to providing more patient-centered cancer treatment planning is the collection of more data on patient-centered outcomes such as how various cancer treatments affect patients’ quality of life and daily functioning. “If we are going to have good decisions, we have to have good evidence,” said Dr. Sharon Murphy. Dr. Mayer added, “We need to create the evidence as we go along and think about the evidence we want to collect.” Dr. Greenfield also stressed the need to do more comparative effectiveness research to provide infor- mation that patients and their doctors need when deciding on the most appropriate care. To facilitate patient-centered care, AHRQ has conducted surveys through the Consumer Assessment of Healthcare Providers and Systems (CAHPS) program. These surveys are designed to bring the patient’s voice into assessments of healthcare quality and the results will be used for qual- ity improvement and consumer choice. AHRQ is currently working with the NCI to develop a cancer-focused CAHPS, Dr. Clancy said. The agency also conducts research aimed at addressing questions that are particularly important to cancer patients, such as what the long-term consequences of various cancer treatment options are. Dr. Claire Snyder, associate professor of medicine at Johns Hopkins University, pointed out the usefulness of the Patient Reported Outcomes Measurement Information System (PROMIS) developed by the National Institutes of Health (NIH). This system is designed to collect a wide array of outcomes, not just those relevant to cancer, and provides short forms as well as computer-adaptive tests to ensure that the questions asked are relevant to the patients in a specific population. It also enables compari- sons across studies. She added that cancer patients can log on and enter information about their quality of life at patientviewpoint.org, which is then fed into the patients’ electronic medical record. Dr. Glasgow noted that PROMIS could also advance performance measurement by creating a common core set of patient reported measures that can be widely used in patient care. Other tools are also available to measure patients’ quality of life, including the Memorial Symptom Assessment Scale, Dr. Mayer reported, as well as the PACIC (Patient Assessment of Chronic Illness Care) that was developed by Dr. Glasgow and measures patient experiences with a chronic disease. Dr. John Ayanian developed a survey instrument based on

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51 IMPROVING THE QUALITY OF ONCOLOGY CARE the Picker patient-centered principles,13 Dr. Wagner reported, and he has found it useful in measuring problems that patients are experiencing in their cancer care. Dr. Wagner cautioned against using generic patient satisfaction surveys because he said they lull providers and organizations into thinking they are measuring patient experience when they are not doing so effec- tively. Dr. Smith also stressed the need to verify patient-reported outcomes, because some may be based on false hopes or other misconceptions of what can be achieved with treatment. Supporting the endeavor to conduct research whose findings will aid cancer treatment planning are the millions of dollars AHRQ recently received via the American Recovery and Reinvestment Act of 2009 to sup- port patient-centered outcomes research, as well as the establishment of the Patient-Centered Outcomes Research Institute (PCORI), which was called for in the Patient Protection and Affordable Care Act of 2010. This institute is supported by federal funds, including taxes on insurers that will amount to about $600 million a year, Dr. Clancy reported. PCORI is governed by stakeholders and has a 21-member board that includes the directors of AHRQ and NIH, industry representatives, clinicians, insurers, and consumers. She said that PCORI will be unique in giving researchers the capacity to do long-term follow-up of cancer patients and to acquire patients’ perspectives on the care they received and how it affected them. “The only way you can find out if care is patient-centered is to ask the patients themselves. Clinical aspirations to get to patient-centered care aren’t enough. We are going to need to get there by constantly checking to see how we’re doing,” Dr. Clancy said. Healthcare Reform Several participants suggested policies to enhance systematic healthcare reform that promotes patient-centered cancer treatment, including more accountable care organizations that coordinate care under a single institu- tion and have quality metrics and incentives to ensure that patient-centered care is being provided. Dr. Wagner noted that “cancer patients need a clini- cal home that takes responsibility and is accountable for the quality of care through all the handoffs.” Dr. Wagner emphasized this need in his figure of the chronic care model, adapted specifically for oncology (Figure 3). Dr. Hoverman added that such model cancer treatment centers will 13 See http://pickerinstitute.org/about/picker-principles/.

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Figure 3 R01988 vector editable scaled forATIENT-CENTERED CANCER TREATMENT PLANNING P landscape above, portrait below 52 Health System Community Resources and Policies Resources and Policies Collabora ng Health Care Organiza ons Decision Support and Clinical Informa on Psychosocial and Mul disciplinary Self-Management Systems and Performance Care Planning Support Measurement Phase of Care C Account- O O Diagnosis able Collaborative Informed, R Prac ce Care Plan and D Surgery Ac vated Team I Linked Pa ents and N and/or Adjuvant Rx Interactions A Families Care T Survivorship Manager/ I O Navigator Improved N Pallia on Outcomes FIGURE 3 The model of quality cancer care developed by Dr. Ed Wagner emphasizes the need for an accountable practice team or navigator to ensure that cancer care is coordinated among the different phases and modalities of care. SOURCE: Wagner presentation (March 1, 2011). Reprinted, with permission, from Ed Wagner. work only if they can be shown to save money, and he encouraged an exploration of how resources can be redirected within the healthcare system. Dr. Ganz suggested addressing the inefficiency and waste in the current healthcare system and said that the resources saved in this effort could be put to use providing better, more comprehensive, and more coordinated care to patients. Dr. Smith noted that abundant resources can be saved by providing cancer patients with appropriate end-of-life care. Mr. Smith suggested involving health economists in healthcare reform efforts and conducting studies that address the financial concerns of the Congressional Budget Office. Other powerful tools for change are videos of patients telling their own stories, several participants suggested. Mr. Erwin added, “You ultimately have to have the facts to have good legislation, but if you don’t have the story and the emotion and the sound bite, the facts themselves don’t sell very easily.” He noted that having people convey their personal experiences with breast cancer was instrumental in getting state cigarette taxes allocated to breast cancer research in California. Ms. Smith added that “engaging

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53 IMPROVING THE QUALITY OF ONCOLOGY CARE patients in solving the barriers is really important,” and Mr. Gorman sug- gested that patients be taught advocacy skills so they can tell their stories powerfully and succinctly. FINAL REMARKS According to many workshop speakers, cancer patients often are not receiving patient-centered cancer treatment planning, and many speakers suggested that there needs to be more promotion of such planning via accreditation standards, guidelines, financial incentives, training, and pol- icy. Speakers also suggested that research on patient-centered cancer treat- ment outcomes and the value of cancer treatment plans is needed. However, several people also pleaded to avoid letting “the great be the enemy of the good” but rather to take concrete steps now, based on existing knowledge and evidence, to foster patient-centered cancer treatment planning. “We have enough trends to show that this is going in a very positive direction,” noted Ms. Esparza. “Don’t use evidence-based practice as an excuse not to do anything.” Mr. Boyajian added, “Develop some consensus, go forward from that, and look for the evidence afterwards. I don’t want to be a patient that is left behind while you are waiting for the gold standard. I want you to give us your best guess, and we’ll start looking at that.” REFERENCES ACS (American Cancer Society). 2010. Cancer facts and figures 2010. Atlanta, GA: American Cancer Society. Alexander, S. C., A. M. Sullivan, A. L. Back, J. A. Tulsky, R. E. Goldman, S. D. Block, S. K. Stewart, M. Wilson-Genderson, and S. L. Lee. 2011. Information giving and receiving in hematological malignancy consultations. Psycho-Oncology 20(5):10. ASCO (American Society of Clinical Oncology). 2011. Advanced care planning. http:// www.cancercarolinas.com/default/assets/File/Advanced_Cancer_Care_Planning.pdf (accessed May 12, 2011). Ayanian, J. Z., A. M. Zalavsky, E. Guadagnoli, C. S. Fuchs, K. J. Yost, C. M. Creech, R. D. Cress, L. C. O’Connor, D. W. West, and W. E. Wright. 2005. Patients’ perceptions of quality care for colorectal cancer by race, ethnicity, and language. Journal of Clinical Oncology 23(27):6576-6586. Bakitas, M., K. D. Lyons, M. T. Hegel, S. Balan, F. C. Brokaw, J. Seville, J. G. Hull, Z. Li, T. D. Tosteson, I. R. Byock, and T. A. Ahles. 2009. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. Journal of the American Medical Association 302(7):741-749.

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58 PATIENT-CENTERED CANCER TREATMENT PLANNING Venetis, M. K., J. D. Robinson, K. L. Turkiewiczc, and M. Allen. 2009. An evidence base for patient-centered cancer care: A meta-analysis of studies of observed communication between cancer specialists and their patients. Patient Education and Counseling 77(3):379-383. Weeks, J. C., E. F. Cook, S. J. O’Day, L. M. Peterson, N. Wenger, D. Reding, F. E. Harrell, P. Kussin, N. V. Dawson, A. F. Connors, Jr., J. Lynn, and R. S. Phillips. 1998. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. Journal of the American Medical Association 279(21):1709-1714. Wright, A. A., B. Zhang, A. Ray, J. W. Mack, E. Trice, T. Balboni, S. L. Mitchell, V. A. Jackson, S. D. Block, P. K. Maciejewski, and H. G. Prigerson. 2008. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association 300(14):1665-1667. Zhang, B., A. A. Wright, H. A. Huskamp, M. E. Nilsson, M. L. Maciejewski, C. C. Earle, S. D. Block, P. K. Maciejewski, and H. G. Prigerson. 2009. Health care costs in the last week of life: Associations with end-of-life conversations. Archives of Internal Medicine 169(5): 480-488.