Assessing and Improving Value in Cancer Care: Workshop Summary (2009)

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3 Clinician–Patient Communication and Its Influence on Value A panel of experts discussed communication in the clinic and at the hospital bedside and its influence on value. Clinician–patient discussions, effective communication with patients about risks and benefits of treat- ment, and patient expectations during cancer care were discussed to illus- trate their effect on value in oncology. Inside the CLINIcian–Patient Discussion in Cancer Care As a practicing medical oncologist, Dr. Anthony Back of the Univer- sity of Washington understood how difficult it could be to communicate about cost and value during clinical encounters, he said. His presentation explored the relationship between communication and value by considering transitions to end-of-life care, illustrating communication problems in cur- rent practice, presenting views from the patients’ perspective, and positing aspects of clinician–patient interaction that confer value. While many in oncology assume that good communication is something that cannot be taught—one is either born with the ability or not—Dr. Back emphasized that communication skills could, in fact, be learned. Transitions from active anticancer treatment to end-of-life care that assures comfort and prepares the patient and family for death are moments in the trajectory of care that can serve as a useful paradigm for considering­  

10 assessing and improving value in cancer care clinician–patient interactions and value. Current communication and practice near the end of life can be improved. For instance, a landmark study found that do-not-resuscitate (DNR) orders are written an average of 2 days before death of the patient (SUPPORT Principal Investigators, 1995), and many patients with metastatic cancer are given new active treat- ment regimens within 2 weeks of death (Harrington and Smith, 2008). While costs increase and treatment too often intensifies at the end of life, Dr. Back explained, what families remember is hearing the message that “There is nothing more to be done” and feeling a sense of abandonment. The clinical reality is one in which doctors are hesitant to be frank with patients and many clinicians behave as though patient well-being will take care of itself if only the right drug is given, with or without discussion. In fact, medical outcomes are highly influenced by communication. Greater communication about transitions to end-of-life care appears to direct subsequent medical care and correlates with lower odds of intensive care unit (ICU) admission, ventilator use, and attempted resuscitation (Wright et al., 2008), as shown in Table 3-1. Without causing increased distress or depression, advance care planning discussions also correlate with greater patient acceptance of terminal illness (Table 3-1), as well as with improved caregiver quality of life, preparation for death, and reduced feelings of regret (Wright et al., 2008). Despite the importance of these discussions, physicians feel ambivalent toward having them. When asked, doctors feel as though they have no good communication options—they fear taking away hope from patients and families if they do discuss prognosis, but they also know that crucial opportunities to improve care will be missed if these discussions are avoided. Often clinicians have had traumatic experiences in previous discussions of prognosis. This leads to negative emotions toward explicitly discussing prognosis or other difficult topics, and a type of collusion develops between the patient and clinician (The et al., 2000), which Dr. Back phrased “Don’t offer, don’t dwell.” There is limited data on whether physician discomfort translates into fewer end-of-life discussions, but one study found that medical students maintained greater positive affect if they concealed bad news in simulated encounters with standardized patients compared to those who disclosed  Positive affect was measured using the Positive and Negative Affect Scale (Watson et al., 1988). Positive affect is “the conscious subjective aspect of an emotion considered apart from bodily changes” (Affect, 2009). 

Clinician–Patient Communication 11 TABLE 3-1  Outcomes Correlated with an End-of-Life Transition Discussion Number (percent) End-of-Life Discussion Total Sample Yes No Adjusted OR Outcomes (n = 332) (n = 123) (n = 209) (95% CI) Medical care outcomes   ICU admission   31 (9.3)   5 (4.1) 26 (12.4) 0.35 (0.14–0.90)   Ventilator use   25 (7.5)   2 (1.6) 23 (11.0) 0.26 (0.08–0.83)   Resuscitation attempt   15 (4.5)   1 (0.8) 14 (6.7) 0.16 (0.03–0.80)   Outpatient hospice for    over 1 week 173 (52.3) 80 (65.6) 93 (44.5) 1.50 (1.04–2.63) Mental disorders   Major depressive disorder   22 (6.7) 10 (8.3) 12 (5.8) Nonsignificant   Any mental disordera   33 (10.2) 11 (9.2) 22 (10.7) Nonsignificant Acceptance of illness as   terminal 125 (37.7) 65 (52.9) 60 (28.7) 2.19 (1.40–3.43) Patient affect scoreb   Depressed 7.4 (2.9) 7.3 (0.2) 7.4 (0.2) Nonsignificant   Nervous or worried 6.9 (3.2) 6.5 (0.3) 7.0 (0.3) Nonsignificant   Sad 7.2 (3.1) 7.3 (0.2) 7.2 (0.2) Nonsignificant   Terrified 7.2 (3.1) 7.1 (0.3) 7.2 (0.3) Nonsignificant aDisorders included major depressive disorder, panic disorder, generalized anxiety disorder, and post-traumatic stress disorder. bAssessed using the McGill Psychological Subscale, adjusted least square means. SOURCES: Back presentation, February 9, 2009; Wright et al., 2008. the bad news (Panagopoulou et al., 2008). In the study, students were told a piece of bad news about a patient they were asked to interview. When students were told to conceal the bad news and did so, their positive affect decreased before seeing the patient and then rebounded afterward because the encounter had not been as bad as they expected. During encounters in which students disclosed the bad news, their positive affect decreased and remained low (Panagopoulou et al., 2008), as shown in Figure 3-1. Based on these results, Dr. Back posited that it is easier emotionally for clinicians to avoid delivering bad news at the end of life, especially if they are not trained to communicate well in these situations. For patients, the emotional content of discussions about prognosis or end-of-life transitions can be overwhelming, and they may have dif- ficulty processing prognostic information as a result. Dr. Back recalled a patient who likened receiving bad news to a dump truck unloading its 

12 assessing and improving value in cancer care 38 37 36 Positive Affect 35 34 33 32 31 T1 T2 T3 Baseline End of End of Anticipation Consultation Disclosure Concealment Control FIGURE 3-1  Medical student positive affect during and after disclosure or conceal- ment of bad news. SOURCES: Back presentation, February 9, 2009; Panagopoulou et al., 2008. Figure 3-1 redrawn.eps contents on her front lawn. Oncologists too rarely address this emotional content, however. The largest study of communication with advanced can- cer patients (270 patients, 51 oncologists, and 398 clinic audio recorded visits) found that oncologists made empathic statements to acknowledge emotions patients expressed in only 11 percent of conversations (Pollak et al., 2007). This emotional content is woven into the clinical encounter and addressing it should not be separable from discussions of patients’ bio­ medical problems. How long would it take to address patient emotion in a clinical encounter? Not very long, according to a randomized study of women with breast cancer who watched one of two videos of physicians speaking to them, one video with basic empathic language and the other with none. Only 40 seconds of empathic language was required to significantly reduce anxiety among the women (Fogarty et al., 1999). Once the skill of empathic communication is acquired, Dr. Back said, it could be used as part of usual clinical practice without taking much additional time. 

Clinician–Patient Communication 13 Dr. Back then presented data showing that communication skills can be learned. During a four-day workshop on communication tasks, oncol- ogy fellows acquired an average of 5.4 skills for delivering bad news and 4.4 skills in transition discussions as assessed by blinded coding of standard- ized patient encounters (Back et al., 2007). The skills acquired included improvements in fellows’ ability to assess patient perceptions, request permission, use the word cancer when delivering bad news, make empathic statements after delivering news, elicit patients’ reactions, and summarize a follow-up plan (Back et al., 2007), as shown in Figure 3-2. In these stan- dardized encounters, when the patient asked “Isn’t there anything more you can do?,” fellows initially replied with “You’ve had a lot of chemotherapy, haven’t you?,” or similar statements. Dr. Back explained that after the work- shop fellows responded more appropriately, saying, for example, “There are more things we can do. Yes, this has been a roller-coaster ride for you, hasn’t it?” The fellows had learned to recognize that there were more things that could be done and acknowledge the difficult emotions the patient was experiencing. The fellows themselves noticed a difference in their conversa- tions after their training. One said, “I feel less flustered, and my words are less tangled. I can focus on the person across from me and find out what they need from me in that moment, and that seems like progress.” Dr. Back shared insights into what patients want during clinical discus- sions. Based on results from a series of interviews, it was clear that patients wanted empathy and guidance from their physicians, and they did not want to be abandoned. One patient said that “The doctor has to allow [the patient] to let his emotions run a little bit.” Others said “I want to hear all the options,” and another was concerned that “There’s no leadership or guidance from the doctor.” Patients also worried that they would be abandoned by their doctor in the end. During another series of interviews, some patients said, “It’s important that doctors still have that contact with patients, even though there isn’t anything the doctor can do to make the patient better,” or “I need to be able to depend on my doctor. If I call you next week, Doctor, will you see me right away, even if I’m not getting more chemotherapy?” Closer to death, patients discussed the importance of closure with their doctor (Back et al., 2009). One spouse whose husband died of cancer said, “I realize the doctor is busy, but he knew [the patient] and I. We were together through the whole thing. It would have been nice to hear from him.” Their oncologist had referred the patient to hospice, and the family never heard from him again. When this oncologist thought about contacting the fam- 

14 FIGURE 3-2  Fellows’ skill acquisition in delivering bad news after a communication workshop. NOTE: Dark bars indicate the percentage of participants acquiring a skill. Light bars indicate 95% confidence intervals. SOURCES: Back presentation, February 9, 2009; Back et al., 2007. R01506 Figure 1-2 bitmapped landscape above, scaled for portait below 

Clinician–Patient Communication 15 ily, he reported, “I felt guilty because I hadn’t called her earlier, and I didn’t know if it was appropriate. Maybe it would just stir up emotional stuff.” The doctor’s interpretation minimized the value of what he had to offer the family in that moment, when in fact what he had to offer—communication, nonabandonment, and a sense of closure at the end of life—was exactly what the patient and his bereaved spouse considered highly valuable. What gives clinician–patient interactions value? Dr. Back explained that the way oncologists communicate creates a framework for defining what is valuable in cancer care. Some aspects of value are immediately obvious, such as access to biomedical therapies and construction of patient hope. However, other aspects of value are only discovered by oncologists through experience and are dependent upon effective communication focused on defining quality of life, handling information, and non­ abandonment. Oncologists are not born with the requisite communication skills—­communication is clinical work that has to be learned. What is still missing from clinician–patient communication? Cost discussions, Dr. Back said, which may be because physicians do not know how to talk about financial costs without assuming the role of gatekeepers. Oncologists will have to learn new ways to communicate to bring societal cost issues into clinical discussions. Invited Response As a social worker, Ms. Diane Blum of CancerCare said understanding the impact of illness on the patients’ families, work, finances, and insur- ance is integral to practice. Social workers do, in fact, talk about money with patients. Patient values—not just monetary values—are central in all of those discussions. Good communication is the cornerstone of quality care. As part of quality care, the Institute of Medicine (IOM) report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (IOM, 2008) recom- mends a regular assessment of domains of concern to patients, including the emotional capacity of the patient and family, as well as their educational, financial, legal, and work needs. The report lays out the evidence base sup- porting communication to meet the wider needs of the patient, including the psychosocial needs that very clearly include cost issues. Ms. Blum said that her organization, CancerCare, receives roughly 1,500 calls per week from people asking for help. Fifteen percent of them have a communication need, and 55 percent have a financial need. Sometimes the amount of clini- 

16 assessing and improving value in cancer care cal information can be overwhelming, and discussions of priorities become difficult. For people facing life-threatening illness, communication about the emotional impact of cancer is essential. For Ms. Blum, a quote from Alice Hoffman captured the emotional impact of cancer well. Written about the moment she learned of her diag- nosis, her quote reads: I was certain my doctor was phoning me to tell me that the biopsy had come back negative. I was absolutely sure of it. But then she said, “Alice, I’m sorry.” I could hear the concern in her voice, and I understood that some things are true, no matter how and when you’re told. In a single moment, the world as I knew it dropped away from me, leaving me on a far and distant planet, one where there was no gravity and no oxygen and nothing made sense anymore. (Hoffman, 2000) This is a powerful reminder of the importance of our words and how much they mean, Ms. Blum said, and the words our culture uses to discuss cancer also deserve attention. Thirty years ago, Susan Sontag wrote about illness as a metaphor (Sontag, 1978), and today the words used to describe illnesses such as cancer carry no less significance. Ms. Blum recalled a maga- zine article entitled “Patrick Swayze Is Winning His Battle Against Cancer” in which the actor said of his pancreatic cancer, “I’m a miracle, dude” and “I’m going to beat this.” Ms. Blum commended Ruth Bader Ginsburg’s candor when announcing that she had pancreatic cancer. She had used similar language to describe her “fight” with cancer. Swayze and Ginsburg are emblematic of a culture in which cancer patients are told to fight and struggle and battle, and anything less is seen as weakness. This is difficult to reconcile with discussions of cost, which patients and clinicians must have. How can one worry about costs when the outcome is uncertain? Patients are told to fight for any chance of cure, and anything less than the fullest effort, financial or otherwise, is undignified. Helping patients understand value in their care and putting it in some perspective to aid their decisions is a big task, Ms. Blum said, but she had hope for strategies to make progress. Invited Response Language matters. Ms. Mary McCabe of Memorial Sloan-Kettering Cancer Center said she would like to do away with much of the language she hears such as “Do you want me to do everything?” or “There’s ­nothing more we can do.” She expressed concern that clinicians, in trying to main- tain hope, sometimes ­inadvertently offer false choices, because they offer 

Clinician–Patient Communication 17 medical interventions of little clinical value and leave the decision up to the patient and family without professional guidance regarding what treatments do or do not have potential for benefit. In her many years as an oncology nurse and an ethics consultant, Ms. McCabe often noticed that patients and their families would talk about their concerns with nurses outside of the exam room, outside of the clinic, or in the hospital hall after the physicians had left. The questions often involved how to maximize quality of life in the time remaining and some- times included the issue of cost of treatment and care. These are the con- versations that need to be brought back into the room before the physician leaves. Too often, clinical teams, patients, and families encounter conflicts at the end of life because the conversations that should have taken place never did, or they become subsumed within other very urgent discussions, such as the discussion to obtain a do-not-resuscitate order. This is not the time for discussions about costs and quality of life. In closing, Ms. McCabe emphasized that value is decided at the bed- side. It is where the rubber hits the road. In the context of limited resources, rather than thinking about bedside decisions regarding cost as “rationing,” it is essential to frame them in the positive, toward value. THERAPY FOR ADVANCED-STAGE CANCER: WHAT DO PATIENTS WANT AND EXPECT? People with cancer want to live, Mr. Robert Erwin of the Marti Nelson Cancer Foundation said. Everyone who is first diagnosed with advanced cancer—at the first recurrence or sign that their therapy will not work—still has hope for meaningful life extension. But when is this hope realistic and when is hope false? One cannot really judge whether hope is realistic or false except in retrospect. Nevertheless, false hope is likely driven by a constant drumbeat of optimism for cure that is frequently misguided and overstated. Another driver is incomplete patient information. Possible sources of infor- mation are many, and there is often too little time for patients to review and understand them all, whether during a clinical encounter or at other times. Outright fraud masquerading as effective treatment can also drive false hope, taking advantage of the sense that cures for advanced cancer must exist and can be found if one just looks hard enough. There is value in hope—realistic hope in particular. The value of hope implies value in the opportunity for life extension, whether a positive outcome is realized or not. The cost of therapy, price of 

18 assessing and improving value in cancer care the drug, and the hospital fees are not valuable just because they work for some people. They also provide an opportunity for everyone who elects to try that therapy, drug, or hospital care. This is what drives many patients and providers to continue treatment even after the first or the second or the third has failed. While the results of randomized controlled trials (RCTs) are held out as the gold standard of clinical evidence, the selected popula- tions they study and their results do not necessarily predict what will hap- pen when the same treatments are adopted in the real world. The RCTs also present their data in terms of means or medians, which are statistical abstractions from a population. Therefore they cannot perfectly predict the outcome for any individual patient. As a result, patients may not be satis- fied to simply take the results of the RCTs as gospel. This view is supported by the surprising increased survival results of the large-scale, observational BRiTE study recently published by Grothey and colleagues (Grothey et al., 2008). There is also value in eliminating options early on, getting rid of fanta- sies, and moving past unrealistic treatment possibilities. Ultimately, there is value for both the patient and for the family in believing that every reason- able option has been tried. When treatments are not effective, continuation of treatment is often described in terms of a war or a battle with cancer. Oncologists talk about their “arsenal” to treat patients, and success is described as a “victory” or “fighting on.” When treatments are not effective, some say that a patient “failed” a treatment. Death is equated with defeat, but this should not be. After all, death is a natural consequence of life, and everyone is terminal. Does this mean that all of us and all of our physicians will fail when we die? No. Treatments fail, not patients or their physicians. Therefore, at certain stages of the cancer care process when further active anticancer treatment is no longer useful, perhaps other terms are more appropriate, such as “peace,” “preparation for death,” and “acceptance.” Discussions of family relationships and the things that people want to do or say before death are also important, but sometimes people need permission to pursue them, Mr. Erwin said. They need encouragement to have those discussions and leave their family slightly more happily than if they were compelled to fight to the bitter end in a coma or the ICU rather than at home or in hospice. Patients want to live—to return to health and a normal life. Sometimes they get it, sometimes they do not, and what they want may change to just a desire for a few more years or months. Patients always want hope, if not 

Clinician–Patient Communication 19 for more life then at least for a good quality of life in the time remaining. Patients certainly want truth from the very beginning, even if they do not understand what is being said; they will understand the truth eventually anyway. Patients want dignity, the absence of pain, and what some call “a good death.” As a society, we need to consider how we can protect vulner- able people from exploitation and increase the value we place on engaging with death as a natural and unavoidable consequence of life. If we can both empower people to be aggressive when it is appropriate but also empower them to accept what is naturally going to happen, we will have achieved better value in cancer care. DISCUSSION Dr. Thomas Smith of the Massey Cancer Center mentioned previous work indicating that patients are more comfortable discussing advance directives with admitting hospitalists than in more established relationships with their oncologists. He asked whether it could be that the closer one is with the clinician, the more uncomfortable the advance directive discussion becomes. Are information brokers needed for these conversations outside of the clinician–patient relationship? Dr. Back wondered if the findings reflected ways in which oncologists and patients construct their relation- ships. He saw these relationship dynamics as potentially changeable and was not sure if a third party with a different level of training would solve the problem or simply complicate the situation. Dr. Betty Ferrell of City of Hope commented on policy remedies to improve value in cancer care, saying that Americans with advanced lung, pancreatic, ovarian, and other cancers are effectively denied access to hos- pice care because of the current reimbursement system, and many more hospitals could improve the quality of the care they deliver if reimbursement was realigned to cover pain management and psychosocial and palliative care services necessary for high-quality care. Ms. Ellen Stovall agreed, say- ing that she often feels as though reimbursement reforms are accomplished piecemeal by retrofitting an already very broken system. Reimbursement should be provided to match and follow the services that have been defined as high quality in the cancer care community. Right now that alignment does not exist. Dr. Lee Newcomer of UnitedHealthcare pointed out that patients rou- tinely budget to make many decisions—hamburger versus steak, new car versus used car, and other things they can or cannot afford. Patients already 

20 assessing and improving value in cancer care understand and discuss costs in these ways. So why is it more difficult for patients to discuss medical costs? Dr. Back thought these discussions were possible, but the framework for considering large-scale societal costs in the context of a clinical encounter did not yet exist. In the United States, doc- tors too often discuss costs as gatekeepers—“You can’t have this”—and this shapes how patients view the cost discussion. What needs to be developed is an appreciation of the societal value and shared benefit that we can protect by discussing cost in health care. This is the challenge. REFERENCES Affect. 2009. Merriam-Webster online dictionary. http://www.merriam-webster.com/ dictionary/affect (accessed August 14, 2009). Back, A. L., R. M. Arnold, W. F. Baile, K. A. Fryer-Edwards, S. C. Alexander, G. E. Barley, T. A. Gooley, and J. A. Tulsky. 2007. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Archives of Internal Medicine 167(5):453–460. Back, A. L., J. P. Young, E. McCown, R. Engelberg, E. K. Vig, L. F. Reinke, M. D. Wenrich, B. B. McGrath, and R. J. Curtis. 2009. Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: Loss of continuity and lack of closure. Archives of Internal Medicine 169(5):474–479. Fogarty, L. A., B. A. Curbow, J. R. Wingard, K. McDonnell, and M. R. Somerfield. 1999. Can 40 seconds of compassion reduce patient anxiety? Journal of Clinical Oncology 17(1):371–379. Grothey, A., M. M. Sugrue, D. M. Purdie, D. Sargent, E. Hedrick, and M. Kozloff. 2008. Bevacizumab beyond first progression is associated with prolonged overall survival in metastatic colorectal cancer: Results from a large observational cohort study (BRiTE). Journal of Clinical Oncology 26(33):5326–5334. Harrington, S. E., and T. J. Smith. 2008. The role of chemotherapy at the end of life: “When is enough, enough?” Journal of the American Medical Association 299(22):2667–2678. Hoffman, A. 2000. Sustained by fiction while facing life’s facts. The New York Times, August 14, 2000. IOM (Institute of Medicine). 2008. Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: The National Academies Press. Panagopoulou, E., G. Mintziori, A. Montgomery, and D. Kapoukranidou. 2008. Concealment of information in clinical practice: Is lying less stressful than telling the truth? Journal of Clinical Oncology 26(7):1175–1177. Pollak, K. I., R. M. Arnold, A. S. Jeffreys, S. C. Alexander, M. K. Olsen, A. P. Abernathy, C. S. Skinner, K. L. Rodriguez, and J. A. Tulsky. 2007. Oncologist communication about emotion during visits with patients with advanced cancer. Journal of Clinical Oncology 25(36):5748–5752. Sontag, S. 1978. Illness as metaphor. New York: Farrar, Strauss, Giroux. 

Clinician–Patient Communication 21 SUPPORT Principal Investigators. 1995. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). Journal of the American Medical Association 274(20):1591–1598. The, A.-M., T. Hak, G. Koeter, and G. van der Wal. 2000. Collusion in doctor-patient communication about imminent death: An ethnographic study. BMJ 321(7273):1376– 1381. Watson, D., L. A. Clark, and A. Tellegen. 1988. Development and validation of brief measures of positive and negative affect: The PANAS scales. Journal of Personality and Social Psychology 54(6):1063–1070. 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):1665–1673.