PERSPECTIVE PROFESSIONALISM AND CARING FOR MEDICAID PATIENTS operating on one Medicaid pa- better or for worse, market-based From the Division of Outcomes and Effective tient every 1 to 2 weeks solutions are dominant and poli- weill Cornell Medical College, New York The model for a 5% commit- cymakers tend to view physicians ment proposal could come from as self-interested actors. Little or This article was published on October 9, the Choosing Wisely campaign, no attention is paid to physician 013, at NEJM.org an initiative of the American Board professionalism or to the possi- 1. Decker SL Two-thirds of primary care dation.To date, 54 specialty soci- sionalism. Policies that are based in 2011as accede o) f (Millwood of Internal Medicine(ABIM)Foun- ble effects of policies on profes- physicians accepted new Medicaid patient eties participating in this cam- on this view may be justifiable if 32: 1183-7. paign have released lists of more many physicians are indeed seek- 2. Sommers AS, Paradise J, Miller than 150 potentially unnecessary ing to maximize their incomes cian willingness and tests and treatments that physi- and refusing to accept even a mary care physicians. Medicare Medicaid in unusual clinical circumstances. price for helping to provide care 3. Bisgaier ), hodes Kv Auditing acess to Perhaps the ABIM Foundation and to the most vulnerable patients in ance. N Engl) Med 2011: 364: 2324-33 other specialty societies could our society. A 5%-commitment 4. Long SK. Physicians may need more than consider making the case for campaign would be a meaningful mbursement to expand Medicaid caring for Medicaid patients and highly visible demonstration of State Health Aff (Millwood) 2013: 32: 1560-7 tarily commit to accepting a min- putting patients first sm asking their members to volun- physician professionalism- of 5. Burstin HR, Johnson wG, Lipsitz SI imum of 5%(or even 3%]) of Med- control study of malpractice claims and sod economic status. JAMA 1993 270: 1697-701 icaid patients into their practices. are available with the full text of this article Dot: 10.1056/NEJMpI310974 We live in an era in which, for at NEJM. org Copynight e 2013 Massachusetts M The word That Shall Not Be Spoken Thomas H. Lee. M. D D uring the years when I egy; from a clinician's perspec- the word"suffering"would take worked in an academic in- tive, it was obviously the right some getting used to. I couldn't tegrated delivery system, my col- thing to do remember the last time that my leagues and I would frequently So it was a pleasant surprise colleagues and I had used that discuss patients'experiences and when I studied the business strat- word. "Suffering"made me un- mprove our manage- egy of a company that assesses comfortable. I wondered whether ment of their pain and reduce patients'experiences and found it was a tad sensational, a bit too their confusion as they navigated that it was based on"helping emotional. But on reflection, ho our complex organization. We health care providers reduce suf- could I object to its use? After all, knew that anxiety is inevitable fering. "This strategic framework from the perspective of patients for patients facing health issues, divided suffering into three types: that is what's going on but we also knew that there is suffering from (e.g, pain), I soon learned that my col anxiety, and there is unnecessary suffering ment (e.g, leagues and I were not the only anxiety- caused, for example, complications), and suffering in- ones who avoided the word. As a by the uncertainty that weighs on duced by dysfunction of the de- matter of policy, it doesn't often patients and their families while livery system(e. g, chaos, confu- appear in our academic journal they await a consultation for a sion, delays). The company was or textbooks, at least in reference otentially serious diagnosis, or recruiting me for a senior man- to particular patients. The widely the confusion induced when cli- agement role, and my first reac- used AMA Manual of Style says, nicians give conflicting informa- tion was that they were interested Avoid describing persons as vic- tion. We worked hard to reduce in the same things as my col- tims or with other emotional these problems. From a business leagues and I were terms that suggest helplessness tive, it was a smart strat- My second reaction was that (afflicted with, suffering from N ENGLJ MED 369: 19 NEJM.ORG NOVEMBER 7, 2013 1777
n engl j med 369;19 nejm.org november 7, 2013 PERSPECTIVE 1777 Professionalism and Caring for Medicaid Patients operating on one Medicaid patient every 1 to 2 weeks. The model for a 5% commitment proposal could come from the Choosing Wisely campaign, an initiative of the American Board of Internal Medicine (ABIM) Foundation. To date, 54 specialty societies participating in this campaign have released lists of more than 150 potentially unnecessary tests and treatments that physicians may want to avoid except in unusual clinical circumstances. Perhaps the ABIM Foundation and other specialty societies could consider making the case for caring for Medicaid patients and asking their members to voluntarily commit to accepting a minimum of 5% (or even 3%?) of Medicaid patients into their practices. We live in an era in which, for better or for worse, market-based solutions are dominant and policymakers tend to view physicians as self-interested actors. Little or no attention is paid to physician professionalism or to the possible effects of policies on professionalism. Policies that are based on this view may be justifiable if many physicians are indeed seeking to maximize their incomes and refusing to accept even a slight reduction in income as the price for helping to provide care to the most vulnerable patients in our society. A 5%-commitment campaign would be a meaningful, highly visible demonstration of physician professionalism — of putting patients first. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Division of Outcomes and Effectiveness Research, Department of Public Health, Weill Cornell Medical College, New York. This article was published on October 9, 2013, at NEJM.org. 1. Decker SL. Two-thirds of primary care physicians accepted new Medicaid patients in 2011-12: a baseline to measure future acceptance rates. Health Aff (Millwood) 2013; 32:1183-7. 2. Sommers AS, Paradise J, Miller C. Physician willingness and resources to serve more Medicaid patients: perspectives from primary care physicians. Medicare Medicaid Res Rev 2011;1(2):E1-E8. 3. Bisgaier J, Rhodes KV. Auditing access to specialty care for children with public insurance. N Engl J Med 2011;364:2324-33. 4. Long SK. Physicians may need more than higher reimbursement to expand Medicaid participation: findings from Washington State. Health Aff (Millwood) 2013;32:1560-7. 5. Burstin HR, Johnson WG, Lipsitz SR, Brennan TA. Do the poor sue more? A casecontrol study of malpractice claims and socioeconomic status. JAMA 1993;270:1697-701. DOI: 10.1056/NEJMp1310974 Copyright © 2013 Massachusetts Medical Society. The Word That Shall Not Be Spoken Thomas H. Lee, M.D. During the years when I worked in an academic integrated delivery system, my colleagues and I would frequently discuss patients’ experiences and ways to improve our management of their pain and reduce their confusion as they navigated our complex organization. We knew that anxiety is inevitable for patients facing health issues, but we also knew that there is anxiety, and there is unnecessary anxiety — caused, for example, by the uncertainty that weighs on patients and their families while they await a consultation for a potentially serious diagnosis, or the confusion induced when clinicians give conflicting information. We worked hard to reduce these problems. From a business perspective, it was a smart strategy; from a clinician’s perspective, it was obviously the right thing to do. So it was a pleasant surprise when I studied the business strategy of a company that assesses patients’ experiences and found that it was based on “helping health care providers reduce suffering.” This strategic framework divided suffering into three types: suffering from disease (e.g., pain), suffering from treatment (e.g., complications), and suffering induced by dysfunction of the delivery system (e.g., chaos, confusion, delays). The company was recruiting me for a senior management role, and my first reaction was that they were interested in the same things as my colleagues and I were. My second reaction was that the word “suffering” would take some getting used to. I couldn’t remember the last time that my colleagues and I had used that word. “Suffering” made me uncomfortable. I wondered whether it was a tad sensational, a bit too emotional. But on reflection, how could I object to its use? After all, from the perspective of patients, that is what’s going on. I soon learned that my colleagues and I were not the only ones who avoided the word. As a matter of policy, it doesn’t often appear in our academic journals or textbooks, at least in reference to particular patients. The widely used AMA Manual of Style says, “Avoid describing persons as victims or with other emotional terms that suggest helplessness (afflicted with, suffering from
PERSPECTIVE THE WORD THAT SHALL NOT BE SPOKEN stricken with, maimed). Public reduce their suffering is exhaust- ceptions. But we also know that health programs can suffer from ed. But there's no obvious refer- we don't do that, and don't be- lack of funding, and human suf- ral or reimbursement code for lieve we can do that, for all pa- fering can be considered (and alleviating suffering itself. tients. To make alleviation of suf- preferably averted) in the abstract, A second, darker theme was fering our job for all our patients but patients must generally sim- raised by several colleagues: the feels like trying to fill a bottom- ply"have "a disease or complica- word"suffering"makes us feel less pit. side effects rather than bad. It reminds us that we are But what about the organiza “ suffer”or“ suffer from”them. powerless against so many of our tions for which we work?Iwas asked some colleagues why patients'problems And it makes relieved to find that alleviation of we tiptoe around this term, which us feel guilty. Suffering demands suffering is part of the mission captures so completely what pa- empathy and response at a level statement for the medical school tients endure, and I got a range beyond that required by "anxiety, where I teach-and in fact relief of responses. One theme was "confusion, or even"pain. "None of suffering is prominent in the commitments of many health Relief of suffering may be a task too vast care delivery organizations. That right Relief of suf to seem real for most peopl ole- something fering may be a task too vast to seem real for most peop on the order of achieving"world peace- something on the order of but organizations need goals around which other hand, organizations need to build their strategies goals around which to build their strategies; they need clarity about the direction in which they a that"suffering"was not "action- of us see ourselves as people who trying to go. Good organizations able"for clinicians, especially would stand by while someone is have ambitious goals, what would physicians. "Suffering" is too suffering. None of us can imag. be considered"shared purpose heterogeneous, too complicated. ine ourselves as parts of organi- in sociologist Max Weber's frame- Aware of the irony, one colleague zations that tolerate or even in- work of motives for social action ointed out that too much talk flict suffering in systematic ways. If an organization has consensus bout patients' suffering migl I hope this doesn't sound on its overall goal, even if that distract clinicians from doing sanctimonious; in fact, I hope it goal can never be fully achieved, what they could to relieve it. sounds coldly clinical Our diag- then other incentives(financial Physicians need to analyze pa- nosis was that we avoid the word and otherwise) can be developed tients' problems and address what "suffering"even though we know to drive progress in the right di- can be addressed. Thus, there is it is real for our patients because rection. 2 an ICD-9(International Classification the idea of taking responsibility If good organizations have am- of Diseases, Ninth Revision) code for for it overwhelms us as individu- bitious goals, great organizations anxiety(300.0); you can bill for als -and we are already over- are effective in pursuing them visits under it, and we have pills whelmed by our other duties and They close the gap between their that help, too. Most hospitals have obligations mission statements and their op- a pain service(ICD-9 code 338). For some patients with whom erations. They find ways to mea We have an increasing number of we really identify, of course, we sure what matters and organize care coordinators, we have palli- will not rest until we have done themselves to improve their per- ative care consultation teams, and all we can to alleviate their suf- formance. They track and man there are CPT(Current Procedural fering. We make the extra phone age their progress toward those Terminology) codes under which calls, have the extra meetings, goals with the same discipline their work can be reimbursed. I and do whatever it takes to make that they apply to their financial turn to these services for my the system work for them. Those performance. own patients when my ability to extra efforts define our self-per- In truth, I'm less interested in 1778 N ENGL丿MED369;19NEM。RGN。 VEMBER7,2013
PERSPECTIVE 1778 n engl j med 369;19 nejm.org november 7, 2013 stricken with, maimed).”1 Public health programs can suffer from lack of funding, and human suffering can be considered (and preferably averted) in the abstract, but patients must generally simply “have” a disease or complications or side effects rather than “suffer” or “suffer from” them. I asked some colleagues why we tiptoe around this term, which captures so completely what patients endure, and I got a range of responses. One theme was that “suffering” was not “actionable” for clinicians, especially physicians. “Suffering” is too heterogeneous, too complicated. Aware of the irony, one colleague pointed out that too much talk about patients’ suffering might distract clinicians from doing what they could to relieve it. Physicians need to analyze patients’ problems and address what can be addressed. Thus, there is an ICD-9 (International Classification of Diseases, Ninth Revision) code for anxiety (300.0); you can bill for visits under it, and we have pills that help, too. Most hospitals have a pain service (ICD-9 code 338). We have an increasing number of care coordinators, we have palliative care consultation teams, and there are CPT (Current Procedural Terminology) codes under which their work can be reimbursed. I turn to these services for my own patients when my ability to reduce their suffering is exhausted. But there’s no obvious referral or reimbursement code for alleviating suffering itself. A second, darker theme was raised by several colleagues: the word “suffering” makes us feel bad. It reminds us that we are powerless against so many of our patients’ problems. And it makes us feel guilty. Suffering demands empathy and response at a level beyond that required by “anxiety,” “confusion,” or even “pain.” None of us see ourselves as people who would stand by while someone is suffering. None of us can imagine ourselves as parts of organizations that tolerate or even inflict suffering in systematic ways. I hope this doesn’t sound sanctimonious; in fact, I hope it sounds coldly clinical. Our diagnosis was that we avoid the word “suffering” even though we know it is real for our patients because the idea of taking responsibility for it overwhelms us as individuals — and we are already overwhelmed by our other duties and obligations. For some patients with whom we really identify, of course, we will not rest until we have done all we can to alleviate their suffering. We make the extra phone calls, have the extra meetings, and do whatever it takes to make the system work for them. Those extra efforts define our self-perceptions. But we also know that we don’t do that, and don’t believe we can do that, for all patients. To make alleviation of suffering our job for all our patients feels like trying to fill a bottomless pit. But what about the organizations for which we work? I was relieved to find that alleviation of suffering is part of the mission statement for the medical school where I teach — and in fact relief of suffering is prominent in the commitments of many health care delivery organizations. That seems right to me. Relief of suffering may be a task too vast to seem real for most people — something on the order of achieving “world peace.” On the other hand, organizations need goals around which to build their strategies; they need clarity about the direction in which they are trying to go. Good organizations have ambitious goals, what would be considered “shared purpose” in sociologist Max Weber’s framework of motives for social action. If an organization has consensus on its overall goal, even if that goal can never be fully achieved, then other incentives (financial and otherwise) can be developed to drive progress in the right direction.2 If good organizations have ambitious goals, great organizations are effective in pursuing them. They close the gap between their mission statements and their operations. They find ways to measure what matters and organize themselves to improve their performance. They track and manage their progress toward those goals with the same discipline that they apply to their financial performance. In truth, I’m less interested in The Word That Shall Not Be Spoken Relief of suffering may be a task too vast to seem real for most people — something on the order of achieving “world peace” — but organizations need goals around which to build their strategies
PERSPECTIVE THE WORD THAT SHALL NOT BE SPOKEN the words we use than in what we goal, endless though the work 1. American Medical Association manual of actually do, and what we orga- might be ed. New York: Oxford University Press, 2007. nize ourselves to do. Collectively we should not shy away from Disclosure forms provided by the author 2: Biller-Andorno N, Lee TH. Ethical phy work that can never be completed. cle at NEJM.org available with the full text of this arti. to shared purpose. N Engl J Med 2013: 368 0-2. For our organizations, relief of suffering does seem like the right From Press Ganey, Wakefield, MA Do:10.1056/NEMp1309660 Copyright 2 2013 Massachusetts Medical Society. Cancer-Drug Discovery and Cardiovascular Surveillance John D Groarke, M.B., B Ch, Susan Cheng, M.D., M.P. H, and Javid Moslehi, M.D irgeted BCR-ABL protein ki- gression while being treated with Pharmaceuticals, which manufac- nase inhibitors have revolu- other agents. tures ponatinib, announced ma- ionized the treatment of chronic Newer tyrosine kinase inhibi- jor changes to its clinical develop myeloid leukemia(CML) and have tors are increasingly being con- ment program. The announcement established tyrosine kinase inhi- sidered as first-line therapy for followed an analysis of data being bition as a model for cancer-drug CML. Dasatinib and nilotinib have collected in a trial of ponatinib in discovery and therapy in general. been approved for first-line treat- patients identified as resistant to In 2001. imatinib became the ment of cml on the basis of evi- or intolerant of dasatinib or nilo- first such tyrosine kinase inhibi- dence of increased molecular tinib or patients identified as car- tor therapy to be approved by the response as compared with ima- riers of the T315I mutation-the Food and Drug Administration tini. The randomized trial of ponatinib for CML Evaluation and (FDA). Initially developed as part ponatinib versus imatinib in pa adelphia Chromosome-Positive of a series of compounds that in- tients with newly diagnosed CML Acute Lymphoblastic Leukemia, hibit the platelet-derived growth (the Ponatinib in Newly Diagnosed or PACE, trial (NCTo1207440 factor receptor, imatinib was also Chronic Myeloid Leukemia, or Over a follow-up period of 2 shown to have potency against EPIC, trial [ClinicalTrials. gov num- months, 11.8% of the patients ABL and Kit kinases. Despite ber, NCTo1650805])sought to in- had serious arterial thrombotic imatinib's breakthrough success, vestigate whether ponatinib also events. 1 After consultation with more than 20% of patients are has greater molecular efficacy the FDA, the company placed a resistant to the drug. Therefore, than imatinib. Although there are hold on enrollment of new pa second-and third-generation in- no long-term data to suggest that tients in clinical studies of pona- hibitors-dasatinib, nilotinib, using the newer agents up front tini. The FDa subsequently an bosutinib, and ponatinib-were has any effect on survival, there nounced an investigation into developed to overcome imatinib has been an increasing push to the frequency of"serious and life- resistance. Among these newer use these agents as first-line threatening blood clots and se agents, ponatinib stands out as therapy, based on the rationale vere narrowing of blood vessels" the only approved tyrosine kinase that more potent BCR-ABL inhibi- among patients taking ponatinib. 2 inhibitor with activity against the tion would translate to deeper and On October 9, Ariad' s stock price "gatekeeper"T315I mutation in more sustained molecular remis- plummeted. On October 18, the BCR-ABL. This mutation, which sions. Thus, the recent evolution company announced the discon- involves a replacement of threo- in CML treatment epitomizes tinuation of the EPIC trial in the nine with isoleucine at ABL resi- many aspects of the ideal bench- interest of patient safety. These ue 315, has been shown to pre- to-bedside investigation and is per- ponatinib-related events follow nu clude inhibition by other tyrosine haps the ultimate success story in merous recent reports of peripher kinase inhibitors and is present oncology. al vascular events and accelerated On October 8, 2013, the story atherosclerosis in patients treated with CML who have disease pro- took an unexpected turn. Ariad with nilotinib. In light of these N ENGLJ MED 369: 19 NEJM.ORG NOVEMBER 7, 2013 177
n engl j med 369;19 nejm.org november 7, 2013 PERSPECTIVE 1779 The Word That Shall Not Be Spoken the words we use than in what we actually do, and what we organize ourselves to do. Collectively, we should not shy away from work that can never be completed. For our organizations, relief of suffering does seem like the right goal, endless though the work might be. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From Press Ganey, Wakefield, MA. 1. American Medical Association manual of style: a guide for authors and editors. 10th ed. New York: Oxford University Press, 2007. 2. Biller-Andorno N, Lee TH. Ethical physician incentives — from carrots and sticks to shared purpose. N Engl J Med 2013;368: 980-2. DOI: 10.1056/NEJMp1309660 Copyright © 2013 Massachusetts Medical Society. Cancer-Drug Discovery and Cardiovascular Surveillance John D. Groarke, M.B., B.Ch., Susan Cheng, M.D., M.P.H., and Javid Moslehi, M.D. Targeted BCR-ABL protein kinase inhibitors have revolutionized the treatment of chronic myeloid leukemia (CML) and have established tyrosine kinase inhibition as a model for cancer-drug discovery and therapy in general. In 2001, imatinib became the first such tyrosine kinase inhibitor therapy to be approved by the Food and Drug Administration (FDA). Initially developed as part of a series of compounds that inhibit the platelet-derived growth factor receptor, imatinib was also shown to have potency against ABL and KIT kinases. Despite imatinib’s breakthrough success, more than 20% of patients are resistant to the drug. Therefore, second- and third-generation inhibitors — dasatinib, nilotinib, bosutinib, and ponatinib — were developed to overcome imatinib resistance. Among these newer agents, ponatinib stands out as the only approved tyrosine kinase inhibitor with activity against the “gatekeeper” T315I mutation in BCR-ABL. This mutation, which involves a replacement of threonine with isoleucine at ABL residue 315, has been shown to preclude inhibition by other tyrosine kinase inhibitors and is present in as many as 20% of patients with CML who have disease progression while being treated with other agents. Newer tyrosine kinase inhibitors are increasingly being considered as first-line therapy for CML. Dasatinib and nilotinib have been approved for first-line treatment of CML on the basis of evidence of increased molecular response as compared with imatinib. The randomized trial of ponatinib versus imatinib in patients with newly diagnosed CML (the Ponatinib in Newly Diagnosed Chronic Myeloid Leukemia, or EPIC, trial [ClinicalTrials.gov number, NCT01650805]) sought to investigate whether ponatinib also has greater molecular efficacy than imatinib. Although there are no long-term data to suggest that using the newer agents up front has any effect on survival, there has been an increasing push to use these agents as first-line therapy, based on the rationale that more potent BCR-ABL inhibition would translate to deeper and more sustained molecular remissions. Thus, the recent evolution in CML treatment epitomizes many aspects of the ideal benchto-bedside investigation and is perhaps the ultimate success story in oncology. On October 8, 2013, the story took an unexpected turn. Ariad Pharmaceuticals, which manufactures ponatinib, announced major changes to its clinical development program. The announcement followed an analysis of data being collected in a trial of ponatinib in patients identified as resistant to or intolerant of dasatinib or nilotinib or patients identified as carriers of the T315I mutation — the Ponatinib for CML Evaluation and Philadelphia Chromosome–Positive Acute Lymphoblastic Leukemia, or PACE, trial (NCT01207440). Over a follow-up period of 24 months, 11.8% of the patients had serious arterial thrombotic events.1 After consultation with the FDA, the company placed a hold on enrollment of new patients in clinical studies of ponatinib. The FDA subsequently announced an investigation into the frequency of “serious and lifethreatening blood clots and severe narrowing of blood vessels” among patients taking ponatinib.2 On October 9, Ariad’s stock price plummeted. On October 18, the company announced the discontinuation of the EPIC trial in the interest of patient safety. These ponatinib-related events follow numerous recent reports of peripheral vascular events and accelerated atherosclerosis in patients treated with nilotinib.3 In light of these
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