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Medicine a nd So cie t y Debra Malina, Ph.D., Editor
Closing the Mortality Gap — Mental Illness and Medical Care Lisa Rosenbaum, M.D. The first time I spoke with Gail Levine, an internist whose practice at Boston’s Brigham and Women’s Hospital is devoted to patients with severe mental illness, she said something that still nags at me. I was caring for a patient of hers, a man in his mid-50s who had paranoid schizophrenia. Mr. D. had recently had a large myocardial infarction but refused revascularization. Though his condition had stabilized, that day he’d become visibly dyspneic, with hemodynamic evidence of early tamponade. Because he’d repeatedly expressed his unwillingness to have needles stuck in him, I feared he would refuse pericardiocentesis and was relieved when Levine called. My track record negotiating with patients with serious mental illness who refuse treatment wasn’t great. I’d recently cared for a relatively young woman with schizophrenia who had severe, symptomatic mitral regurgitation. She was an ideal surgical candidate, but I couldn’t convince her to get blood draws, much less surgery. She sat in bed, gently rocking, brushing her hair, not answering questions, and only occasionally allowing an exam. I soon gave up trying to persuade her and didn’t attempt to understand her reasoning. Instead, because she clearly lacked decision-making capacity, we initiated the monthslong process of court-appointed guardianship. This step spared me a harder decision: Should we save her heart if doing so further harmed her already tortured soul? With Mr. D., there was no time to punt the tough decisions to someone else; if he went into tamponade, he could die. Though I wouldn’t have let that happen, Levine wasn’t so sure. “You realize,” she said, “that patients with severe mental illness die, on average, at age 53. This is one big reason why. Doctors assume that because he has mental illness, he has no quality of life. You can’t just let him refuse.”
The Mor talit y G ap In 1932, Benjamin Malzberg, a New York epidemiologist, published a study showing that people with mental illness died, on average, 14 to 18 years earlier than otherwise similar people in the general population.1 This mortality gap persists today and may even have widened: a 2006 U.S. study suggested that it ranged from 13 to 30 years.2 Indeed, the gap persists worldwide,3 mostly owing to medical conditions, such as cancer and cardiovascular disease, rather than “unnatural” causes, such as accidents and suicide. Until recently, this disparity was largely ignored, but its persistence reflects more than an attentional deficit. Some obvious contributing factors lack readily available solutions. Certain behaviors that are more common among people with serious mental illness, such as smoking, substance abuse, and physical inactivity, heighten the risk for chronic diseases. Treatment of such diseases depends on adherence to medications and behavior changes, which may be more difficult for patients with severe mental illness. The impaired insight resulting from some forms of mental illness can compromise adherence, as can low health literacy and poverty, which disproportionately affect this population. Finally, common medications that may be critical for psychiatric stabilization often cause obesity and diabetes, thereby contributing to the cardiovascular disease burden. These realities make it difficult to imagine narrowing the mortality gap anytime soon. But after observing Levine and other physicians who care for patients with serious mental illness, I wonder to what extent such pessimism is a selffulfilling prophecy. Might our attitudes toward mentally ill people contribute to this mortality gap, and if so, can we change them?
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
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Although there are few data on the effects of our attitudes on the health of mentally ill people, one relatively well studied phenomenon is diagnostic overshadowing, a tendency to attribute such patients’ physical symptoms to their mental illness. One study, for instance, showed that physicians’ awareness that a patient presenting with acute pain had a history of depression or somatic symptoms reduced their level of suspicion of serious illness and thus the likelihood of ordering further tests.4 Yet there may be a fine line between biased interpretations and relevant information. For instance, when I’m trying to determine whether a patient with chest pain is having an acute coronary syndrome, a history of depression shouldn’t lower my suspicion, but a long history of somatic symptoms probably should. Clinical judgment, for better or for worse, comes down to judging. Another approach to studying bias is to assess whether rates of guideline-recommended care differ between patients with mental illness and those without it. And they seem to. Studies have identified disparities in various types of care, from some types of cancer screening5,6 to elective surgeries7 to bloodpressure monitoring8 — though such differences may also reflect patient preference or lack of follow-up. More telling disparities are those in rates of coronary angiography 9 and revascularization10 among patients with acute myocardial infarction, a one-time event in an urgent setting. Still, bias may not be the cause. Patients with serious mental illness, particularly those with paranoia, may delay seeking care, which reduces the potential benefits of revascularization. Moreover, no one wants to put a stent in someone who’s unlikely to comply with dual-antiplatelet therapy. And, as Mr. D.’s case illustrates, care may be offered but refused. The question is whether a willingness to allow patients to refuse necessary care represents a bias in its own right.
When Mr. D. presented with chest pain, Levine was notified early in the morning that he was in the emergency room. The cardiologist who saw him recommended coronary angiography. Mr. D. refused. Levine told the treating team that he had a guardian, a court-appointed attorney, who could give consent for the procedure and that if the guardian was unreachable, an ethics consult should be called. “He wasn’t competent to refuse,” she told me. Though Levine tried calling the treating team several times throughout the day, she learned that evening that the guardian had been reached at around 2 p.m. but got disconnected and never called back. The substantial delay in care meant that the proposed benefit of the procedure was uncertain, which made it harder to justify overriding Mr. D.’s wishes. But typically, when the benefit is clear, the stakes are high, and the patient lacks decision-making capacity, the law is straightforward: consent is “implied,” and physicians should override the patient’s wishes. Where the potential for bias comes in, then, is in determining whether the patient has capacity. As Nicholas Bagley, a health law professor at the University of Michigan, explains, capacity assessments represent the application not of rules (“Stop at a red light”) but of standards (“Stop if you think it’s unsafe”) — which helps explain why we don’t do them well. One study found that of 302 medical inpatients, 40% lacked capacity to consent to treatment, but the treating team recognized that lack in only about 25% of those cases.11 “You can’t just pull out your capacity-meter,” Bagley says, “and say that a patient lacks capacity.” One reason we may falsely assume that a patient has capacity is time: physicians may feel that they can’t afford to spend 20 minutes doing a proper assessment, and it’s much quicker to assume that patients have capacity to refuse care than to follow the long procedure to override their wishes. But that procedure consumes more than time: it also consumes us. There’s some-
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
Medicine and Society
thing inescapably brutal in sedating and restraining a floridly psychotic patient in order to impose undesired care, regardless of the medical need. The potential need for force also reminds us of our legal Catch-22. Although you could be sued for negligence for failing to provide necessary treatment for someone who lacked capacity to refuse care, you could also be sued for battery for overriding the wishes of a patient who you mistakenly thought lacked capacity. Though Bagley emphasizes that courts would be “pretty unlikely” to second-guess physicians, he concedes that the “residual legal risk may give a physician pause.” Moreover, often it’s simply unclear whether a patient has capacity. My own approach often entails a perfunctory exercise in repeatafter-me — for example, “Tell me you understand that if you leave the hospital with such a high potassium level, you could die.” If the patient says, “I understand I could die,” I document the interaction and rationalize: “What else can I do?” A lot, actually. The MacArthur test, the most widely used capacity-measurement tool, assesses four criteria.12 The patient must be able to communicate a choice, understand the relevant information, demonstrate appreciation for the situation and its consequences, and reason about the treatment options. Whereas “understanding” is reflected in an ability to relay the relevant medical facts, “appreciation” requires a sense of how those facts relate to oneself: a patient may understand that kidney failure may cause lethally high potassium levels while maintaining that his kidneys are not failing. Better training in capacity assessment is obviously necessary, but I suspect that no amount of training can bridge the gap where law and ethics divide. As the ethical mandate to share decisions and honor patient preferences mounts, invoking legal criteria to justify overriding such wishes becomes increasingly unacceptable. The law may distinguish between the competent woman with a recently controlled gastrointestinal bleed who refuses colonoscopy so she can attend her daughter’s wedding and the delusional woman
who believes that the prep contains snakes; but as we strive to shed our paternalism, do we have a harder time distinguishing a preference that should be honored from an irrational decision that should be ignored?
Under s tanding the Patient If coercion is what we find aversive, then the obvious question is whether there are better ways to convince patients to get needed care. But perhaps this question is precisely the problem. More than 30 years ago, research by Paul Appel baum, a Columbia University psychiatrist who created the MacArthur test, showed that the reasons for treatment refusals were typically complex and related to poor communication, lack of trust, and underlying psychological factors such as depression or delusions. But he observed that “Little or no effort was made to ascertain, by talking with the patient, the factors underlying the refusal.”13 Asked about the study now, Appelbaum emphasizes that just a little effort to understand can be lifesaving. One man with a massive lung tumor, for instance, refused surgical resection, without which he was likely to die. When Appelbaum spoke with the patient and his wife, he discovered that they’d heard that cancer spreads when exposed to air. In many cases, if a surgical team takes the time to elicit such misinformed beliefs, they can easily be corrected. But where does a misinformed belief end and delusion begin? A few months after Mr. D.’s heart attack, Levine saw him in the clinic. He’d stopped taking his medications, insisting that another physician had told him his heart was “beautiful.” Levine reviewed his electrocardiogram and told him it revealed the extent of his myocardial infarction. He fired her. Levine says she regrets her handling of the situation. “You should never directly contradict delusional people,” she says. I said I couldn’t understand how she could convince him to take his cardiac medications if she didn’t first convince him he had heart disease. She replied: “I should have said, ‘I want to keep your beautiful heart beautiful.’”
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
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It Take s a Vill age Jim O’Connell, the internist who cofounded the Boston Healthcare for the Homeless Program, once cared for a man with schizophrenia who had a small basal-cell cancer on his scalp. For 16 years, O’Connell urged him to have the lesion treated, but instead the man would pick it off and it would return, until finally it invaded his occiput and metastasized to his spine. He was hospitalized for surgery, and when he received medical and psychiatric treatment, his mental condition stabilized. Too late for a cure, his newfound mental clarity carried the harshness of hindsight. Several times before he died, he told O’Connell, “I can’t figure out why I didn’t just do what you said.” “We’re stuck in this situation a lot,” O’Connell says, “not knowing when the illness is deadly versus something we can work with.” Like many mentally ill people who live for years with chronic diseases, this man was in no imminent danger. Until he was. A tendency to accede to refusals of highstakes care by patients who are near death may contribute to the mortality gap, but since most opportunities to extend life occur much earlier, attitudes informing our approach to chronic disease management may affect the disparity more. The challenge is to separate passivity driven by pernicious bias from appropriate respect for choice. Though capacity seems like a binary trait — either you have it or you don’t — in practice, capacity thresholds tend to be lower for less critical decisions: it’s generally inappropriate to force someone to take statins, get a mammogram, or even have a slow-growing basal cell removed. But though coercion is rarely justifiable, the rationalization that “there’s only so much you can do” risks misrepresenting laziness as respect. There’s usually plenty we can do short of coercion, but it’s infinitely easier to document that the “patient refused” care than to ensure that the care is provided. Consider the effort required to coordinate a routine colonoscopy for someone with serious 1588
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mental illness. Several visits are often needed to convince the patient that the procedure is worthwhile, and physicians who succeed have often spent years building trust. If the patient consents, how do you orchestrate the preparation, particularly if the patient is homeless? You may admit the patient the previous night or work closely with group-home staff, but any little hiccup — difficulty rising for an early appointment, a breakfast eaten accidentally — can undo everything. One man, facing his second colonoscopy attempt, told me about being sent home before his first. “I even had the pajamas on,” he said, referring to the hospital gown. But he had no ride home, so the nurse sent him away. Levine told me many stories highlighting the challenges of getting patients with serious mental illness through our system. “‘It takes a village’ doesn’t even begin to describe it,” she said.
Our S ys tem, Our selve s The need for intensive coordination explains the appeal of integrated care models, designed to combine medical and mental health care; Levine’s practice, which embeds primary care in the comprehensive mental health services at Massachusetts Mental Health Center, is piloting this approach. Although we don’t know whether these models will narrow the mortality gap, simply easing navigation through our system would be valuable. But purportedly transformative care models often fail to substantially improve the quality of care, perhaps in part because of behavior fostered by a subtle shift in responsibility: as we focus on “fixing the broken system,” do we stop seeking solutions from within ourselves? What do abstract concepts like integration mean to a specific patient who needs your help — say, a psychotic patient with poorly controlled diabetes who’s in the midst of detox, who’s blind in one eye from being pushed down the stairs at her group home, and who, after you spend 40 minutes clarifying her medications and arranging an urgent ophthalmology appointment, tells
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
Medicine and Society
you she thinks she’s pregnant and wishes to focus the visit accordingly? Having watched Levine navigate such an encounter gracefully and compassionately as my own blood pressure rose, I realize it would be Pollyannaish to conclude that we should all just strive to be more like her. People with serious mental illness are often our toughest patients; feeling overwhelmed by the effort of addressing their needs within our current system is rational and precisely why system changes are imperative. Yet “the system” is made up of millions of people like us. To meaningfully improve care for the mentally ill, we must recognize that, as Massachusetts General Hospital psychiatrist Oliver Freudenreich puts it, “Care integration is an attitude.” No doubt, some attitudes that compromise care are easier to change than others. Negotiating more effectively about care refusals, more adeptly assessing capacity, and recognizing when our efforts to orchestrate care have been inadequate seem feasible. Far harder is overcoming any collective belief that what mentally ill people truly need is not something we can offer. I was reminded of this challenge a few weeks ago when, walking home late at night, I passed a disheveled woman crying in anguish: “How am I going to get home?” She looked familiar, and I assumed I’d seen her on the street before. But as I sped up in the opposite direction, I became increasingly certain that she’d been a patient of mine a few months earlier. At that time she was in heart failure, and I knew how to fix her. Now she was psychotic, seemingly homeless, and I didn’t. So I kept walking, telling myself we weren’t so much doctor and patient as two people on the street, late at night, both trying to get home.
Editor’s note: This article is Part 2 in a three-part series. Next week: “Unlearning Our Helplessness — Coexisting Serious Mental and Medical Illness.” Disclosure forms provided by the author are available with the full text of this article at NEJM.org. Dr. Rosenbaum is a national correspondent for the Journal. 1. Malzberg B. Life tables for patients with mental disease.
J Am Stat Assoc 1932;27:177A:160-74. 2. Colton CW, Manderscheid RW. Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Prev Chronic Dis 2006;3:A42. 3. Walker ER, McGee RE, Druss BG. Mortality in mental disorders and global disease burden implications: a systematic review and meta-analysis. JAMA Psychiatry 2015;72:334-41. 4. Graber MA, Bergus G, Dawson JD, Wood GB, Levy BT, Levin I. Effect of a patient’s psychiatric history on physicians’ estimation of probability of disease. J Gen Intern Med 2000;15:204-6. 5. Aggarwal A, Pandurangi A, Smith W. Disparities in breast and cervical cancer screening in women with mental illness: a systematic literature review. Am J Prev Med 2013;44:392-8. 6. Xiong GL, Bermudes RA, Torres SN, Hales RE. Use of cancerscreening services among persons with serious mental illness in Sacramento County. Psychiatr Serv 2008;59:929-32. 7. Li Y, Cai X, Du H, et al. Mentally ill Medicare patients less likely than others to receive certain types of surgery. Health Aff (Millwood) 2011;30:1307-15. 8. De Hert M, Correll CU, Bobes J, et al. Physical illness in patients with severe mental disorders. I. Prevalence, impact of medications and disparities in health care. World Psychiatry 2011;10:52-77. 9. Druss BG, Bradford DW, Rosenheck RA, Radford MJ, Krumholz HM. Mental disorders and use of cardiovascular procedures after myocardial infarction. JAMA 2000;283:506-11. 10. Schulman-Marcus J, Goyal P, Swaminathan RV, et al. Comparison of trends in incidence, revascularization, and in-hospital mortality in ST-elevation myocardial infarction in patients with versus without severe mental illness. Am J Cardiol 2016; 117:1405-10. 11. Raymont V, Bingley W, Buchanan A, et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: cross-sectional study. Lancet 2004;364:1421-7. 12. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med 2007;357:1834-40. 13. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA 1983;250:1296-301. DOI: 10.1056/NEJMms1610125 Copyright © 2016 Massachusetts Medical Society.
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Closing the Mortality Gap — Mental Illness and Medical Care Lisa Rosenbaum, M.D. The first time I spoke with Gail Levine, an internist whose practice at Boston’s Brigham and Women’s Hospital is devoted to patients with severe mental illness, she said something that still nags at me. I was caring for a patient of hers, a man in his mid-50s who had paranoid schizophrenia. Mr. D. had recently had a large myocardial infarction but refused revascularization. Though his condition had stabilized, that day he’d become visibly dyspneic, with hemodynamic evidence of early tamponade. Because he’d repeatedly expressed his unwillingness to have needles stuck in him, I feared he would refuse pericardiocentesis and was relieved when Levine called. My track record negotiating with patients with serious mental illness who refuse treatment wasn’t great. I’d recently cared for a relatively young woman with schizophrenia who had severe, symptomatic mitral regurgitation. She was an ideal surgical candidate, but I couldn’t convince her to get blood draws, much less surgery. She sat in bed, gently rocking, brushing her hair, not answering questions, and only occasionally allowing an exam. I soon gave up trying to persuade her and didn’t attempt to understand her reasoning. Instead, because she clearly lacked decision-making capacity, we initiated the monthslong process of court-appointed guardianship. This step spared me a harder decision: Should we save her heart if doing so further harmed her already tortured soul? With Mr. D., there was no time to punt the tough decisions to someone else; if he went into tamponade, he could die. Though I wouldn’t have let that happen, Levine wasn’t so sure. “You realize,” she said, “that patients with severe mental illness die, on average, at age 53. This is one big reason why. Doctors assume that because he has mental illness, he has no quality of life. You can’t just let him refuse.”
The Mor talit y G ap In 1932, Benjamin Malzberg, a New York epidemiologist, published a study showing that people with mental illness died, on average, 14 to 18 years earlier than otherwise similar people in the general population.1 This mortality gap persists today and may even have widened: a 2006 U.S. study suggested that it ranged from 13 to 30 years.2 Indeed, the gap persists worldwide,3 mostly owing to medical conditions, such as cancer and cardiovascular disease, rather than “unnatural” causes, such as accidents and suicide. Until recently, this disparity was largely ignored, but its persistence reflects more than an attentional deficit. Some obvious contributing factors lack readily available solutions. Certain behaviors that are more common among people with serious mental illness, such as smoking, substance abuse, and physical inactivity, heighten the risk for chronic diseases. Treatment of such diseases depends on adherence to medications and behavior changes, which may be more difficult for patients with severe mental illness. The impaired insight resulting from some forms of mental illness can compromise adherence, as can low health literacy and poverty, which disproportionately affect this population. Finally, common medications that may be critical for psychiatric stabilization often cause obesity and diabetes, thereby contributing to the cardiovascular disease burden. These realities make it difficult to imagine narrowing the mortality gap anytime soon. But after observing Levine and other physicians who care for patients with serious mental illness, I wonder to what extent such pessimism is a selffulfilling prophecy. Might our attitudes toward mentally ill people contribute to this mortality gap, and if so, can we change them?
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
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Although there are few data on the effects of our attitudes on the health of mentally ill people, one relatively well studied phenomenon is diagnostic overshadowing, a tendency to attribute such patients’ physical symptoms to their mental illness. One study, for instance, showed that physicians’ awareness that a patient presenting with acute pain had a history of depression or somatic symptoms reduced their level of suspicion of serious illness and thus the likelihood of ordering further tests.4 Yet there may be a fine line between biased interpretations and relevant information. For instance, when I’m trying to determine whether a patient with chest pain is having an acute coronary syndrome, a history of depression shouldn’t lower my suspicion, but a long history of somatic symptoms probably should. Clinical judgment, for better or for worse, comes down to judging. Another approach to studying bias is to assess whether rates of guideline-recommended care differ between patients with mental illness and those without it. And they seem to. Studies have identified disparities in various types of care, from some types of cancer screening5,6 to elective surgeries7 to bloodpressure monitoring8 — though such differences may also reflect patient preference or lack of follow-up. More telling disparities are those in rates of coronary angiography 9 and revascularization10 among patients with acute myocardial infarction, a one-time event in an urgent setting. Still, bias may not be the cause. Patients with serious mental illness, particularly those with paranoia, may delay seeking care, which reduces the potential benefits of revascularization. Moreover, no one wants to put a stent in someone who’s unlikely to comply with dual-antiplatelet therapy. And, as Mr. D.’s case illustrates, care may be offered but refused. The question is whether a willingness to allow patients to refuse necessary care represents a bias in its own right.
When Mr. D. presented with chest pain, Levine was notified early in the morning that he was in the emergency room. The cardiologist who saw him recommended coronary angiography. Mr. D. refused. Levine told the treating team that he had a guardian, a court-appointed attorney, who could give consent for the procedure and that if the guardian was unreachable, an ethics consult should be called. “He wasn’t competent to refuse,” she told me. Though Levine tried calling the treating team several times throughout the day, she learned that evening that the guardian had been reached at around 2 p.m. but got disconnected and never called back. The substantial delay in care meant that the proposed benefit of the procedure was uncertain, which made it harder to justify overriding Mr. D.’s wishes. But typically, when the benefit is clear, the stakes are high, and the patient lacks decision-making capacity, the law is straightforward: consent is “implied,” and physicians should override the patient’s wishes. Where the potential for bias comes in, then, is in determining whether the patient has capacity. As Nicholas Bagley, a health law professor at the University of Michigan, explains, capacity assessments represent the application not of rules (“Stop at a red light”) but of standards (“Stop if you think it’s unsafe”) — which helps explain why we don’t do them well. One study found that of 302 medical inpatients, 40% lacked capacity to consent to treatment, but the treating team recognized that lack in only about 25% of those cases.11 “You can’t just pull out your capacity-meter,” Bagley says, “and say that a patient lacks capacity.” One reason we may falsely assume that a patient has capacity is time: physicians may feel that they can’t afford to spend 20 minutes doing a proper assessment, and it’s much quicker to assume that patients have capacity to refuse care than to follow the long procedure to override their wishes. But that procedure consumes more than time: it also consumes us. There’s some-
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
Medicine and Society
thing inescapably brutal in sedating and restraining a floridly psychotic patient in order to impose undesired care, regardless of the medical need. The potential need for force also reminds us of our legal Catch-22. Although you could be sued for negligence for failing to provide necessary treatment for someone who lacked capacity to refuse care, you could also be sued for battery for overriding the wishes of a patient who you mistakenly thought lacked capacity. Though Bagley emphasizes that courts would be “pretty unlikely” to second-guess physicians, he concedes that the “residual legal risk may give a physician pause.” Moreover, often it’s simply unclear whether a patient has capacity. My own approach often entails a perfunctory exercise in repeatafter-me — for example, “Tell me you understand that if you leave the hospital with such a high potassium level, you could die.” If the patient says, “I understand I could die,” I document the interaction and rationalize: “What else can I do?” A lot, actually. The MacArthur test, the most widely used capacity-measurement tool, assesses four criteria.12 The patient must be able to communicate a choice, understand the relevant information, demonstrate appreciation for the situation and its consequences, and reason about the treatment options. Whereas “understanding” is reflected in an ability to relay the relevant medical facts, “appreciation” requires a sense of how those facts relate to oneself: a patient may understand that kidney failure may cause lethally high potassium levels while maintaining that his kidneys are not failing. Better training in capacity assessment is obviously necessary, but I suspect that no amount of training can bridge the gap where law and ethics divide. As the ethical mandate to share decisions and honor patient preferences mounts, invoking legal criteria to justify overriding such wishes becomes increasingly unacceptable. The law may distinguish between the competent woman with a recently controlled gastrointestinal bleed who refuses colonoscopy so she can attend her daughter’s wedding and the delusional woman
who believes that the prep contains snakes; but as we strive to shed our paternalism, do we have a harder time distinguishing a preference that should be honored from an irrational decision that should be ignored?
Under s tanding the Patient If coercion is what we find aversive, then the obvious question is whether there are better ways to convince patients to get needed care. But perhaps this question is precisely the problem. More than 30 years ago, research by Paul Appel baum, a Columbia University psychiatrist who created the MacArthur test, showed that the reasons for treatment refusals were typically complex and related to poor communication, lack of trust, and underlying psychological factors such as depression or delusions. But he observed that “Little or no effort was made to ascertain, by talking with the patient, the factors underlying the refusal.”13 Asked about the study now, Appelbaum emphasizes that just a little effort to understand can be lifesaving. One man with a massive lung tumor, for instance, refused surgical resection, without which he was likely to die. When Appelbaum spoke with the patient and his wife, he discovered that they’d heard that cancer spreads when exposed to air. In many cases, if a surgical team takes the time to elicit such misinformed beliefs, they can easily be corrected. But where does a misinformed belief end and delusion begin? A few months after Mr. D.’s heart attack, Levine saw him in the clinic. He’d stopped taking his medications, insisting that another physician had told him his heart was “beautiful.” Levine reviewed his electrocardiogram and told him it revealed the extent of his myocardial infarction. He fired her. Levine says she regrets her handling of the situation. “You should never directly contradict delusional people,” she says. I said I couldn’t understand how she could convince him to take his cardiac medications if she didn’t first convince him he had heart disease. She replied: “I should have said, ‘I want to keep your beautiful heart beautiful.’”
n engl j med 375;16 nejm.org October 20, 2016
The New England Journal of Medicine Downloaded from nejm.org on October 21, 2016. For personal use only. No other uses without permission. Copyright © 2016 Massachusetts Medical Society. All rights reserved.
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It Take s a Vill age Jim O’Connell, the internist who cofounded the Boston Healthcare for the Homeless Program, once cared for a man with schizophrenia who had a small basal-cell cancer on his scalp. For 16 years, O’Connell urged him to have the lesion treated, but instead the man would pick it off and it would return, until finally it invaded his occiput and metastasized to his spine. He was hospitalized for surgery, and when he received medical and psychiatric treatment, his mental condition stabilized. Too late for a cure, his newfound mental clarity carried the harshness of hindsight. Several times before he died, he told O’Connell, “I can’t figure out why I didn’t just do what you said.” “We’re stuck in this situation a lot,” O’Connell says, “not knowing when the illness is deadly versus something we can work with.” Like many mentally ill people who live for years with chronic diseases, this man was in no imminent danger. Until he was. A tendency to accede to refusals of highstakes care by patients who are near death may contribute to the mortality gap, but since most opportunities to extend life occur much earlier, attitudes informing our approach to chronic disease management may affect the disparity more. The challenge is to separate passivity driven by pernicious bias from appropriate respect for choice. Though capacity seems like a binary trait — either you have it or you don’t — in practice, capacity thresholds tend to be lower for less critical decisions: it’s generally inappropriate to force someone to take statins, get a mammogram, or even have a slow-growing basal cell removed. But though coercion is rarely justifiable, the rationalization that “there’s only so much you can do” risks misrepresenting laziness as respect. There’s usually plenty we can do short of coercion, but it’s infinitely easier to document that the “patient refused” care than to ensure that the care is provided. Consider the effort required to coordinate a routine colonoscopy for someone with serious 1588
of
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mental illness. Several visits are often needed to convince the patient that the procedure is worthwhile, and physicians who succeed have often spent years building trust. If the patient consents, how do you orchestrate the preparation, particularly if the patient is homeless? You may admit the patient the previous night or work closely with group-home staff, but any little hiccup — difficulty rising for an early appointment, a breakfast eaten accidentally — can undo everything. One man, facing his second colonoscopy attempt, told me about being sent home before his first. “I even had the pajamas on,” he said, referring to the hospital gown. But he had no ride home, so the nurse sent him away. Levine told me many stories highlighting the challenges of getting patients with serious mental illness through our system. “‘It takes a village’ doesn’t even begin to describe it,” she said.
Our S ys tem, Our selve s The need for intensive coordination explains the appeal of integrated care models, designed to combine medical and mental health care; Levine’s practice, which embeds primary care in the comprehensive mental health services at Massachusetts Mental Health Center, is piloting this approach. Although we don’t know whether these models will narrow the mortality gap, simply easing navigation through our system would be valuable. But purportedly transformative care models often fail to substantially improve the quality of care, perhaps in part because of behavior fostered by a subtle shift in responsibility: as we focus on “fixing the broken system,” do we stop seeking solutions from within ourselves? What do abstract concepts like integration mean to a specific patient who needs your help — say, a psychotic patient with poorly controlled diabetes who’s in the midst of detox, who’s blind in one eye from being pushed down the stairs at her group home, and who, after you spend 40 minutes clarifying her medications and arranging an urgent ophthalmology appointment, tells
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Medicine and Society
you she thinks she’s pregnant and wishes to focus the visit accordingly? Having watched Levine navigate such an encounter gracefully and compassionately as my own blood pressure rose, I realize it would be Pollyannaish to conclude that we should all just strive to be more like her. People with serious mental illness are often our toughest patients; feeling overwhelmed by the effort of addressing their needs within our current system is rational and precisely why system changes are imperative. Yet “the system” is made up of millions of people like us. To meaningfully improve care for the mentally ill, we must recognize that, as Massachusetts General Hospital psychiatrist Oliver Freudenreich puts it, “Care integration is an attitude.” No doubt, some attitudes that compromise care are easier to change than others. Negotiating more effectively about care refusals, more adeptly assessing capacity, and recognizing when our efforts to orchestrate care have been inadequate seem feasible. Far harder is overcoming any collective belief that what mentally ill people truly need is not something we can offer. I was reminded of this challenge a few weeks ago when, walking home late at night, I passed a disheveled woman crying in anguish: “How am I going to get home?” She looked familiar, and I assumed I’d seen her on the street before. But as I sped up in the opposite direction, I became increasingly certain that she’d been a patient of mine a few months earlier. At that time she was in heart failure, and I knew how to fix her. Now she was psychotic, seemingly homeless, and I didn’t. So I kept walking, telling myself we weren’t so much doctor and patient as two people on the street, late at night, both trying to get home.
Editor’s note: This article is Part 2 in a three-part series. Next week: “Unlearning Our Helplessness — Coexisting Serious Mental and Medical Illness.” Disclosure forms provided by the author are available with the full text of this article at NEJM.org. Dr. Rosenbaum is a national correspondent for the Journal. 1. Malzberg B. Life tables for patients with mental disease.
J Am Stat Assoc 1932;27:177A:160-74. 2. Colton CW, Manderscheid RW. Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Prev Chronic Dis 2006;3:A42. 3. Walker ER, McGee RE, Druss BG. Mortality in mental disorders and global disease burden implications: a systematic review and meta-analysis. JAMA Psychiatry 2015;72:334-41. 4. Graber MA, Bergus G, Dawson JD, Wood GB, Levy BT, Levin I. Effect of a patient’s psychiatric history on physicians’ estimation of probability of disease. J Gen Intern Med 2000;15:204-6. 5. Aggarwal A, Pandurangi A, Smith W. Disparities in breast and cervical cancer screening in women with mental illness: a systematic literature review. Am J Prev Med 2013;44:392-8. 6. Xiong GL, Bermudes RA, Torres SN, Hales RE. Use of cancerscreening services among persons with serious mental illness in Sacramento County. Psychiatr Serv 2008;59:929-32. 7. Li Y, Cai X, Du H, et al. Mentally ill Medicare patients less likely than others to receive certain types of surgery. Health Aff (Millwood) 2011;30:1307-15. 8. De Hert M, Correll CU, Bobes J, et al. Physical illness in patients with severe mental disorders. I. Prevalence, impact of medications and disparities in health care. World Psychiatry 2011;10:52-77. 9. Druss BG, Bradford DW, Rosenheck RA, Radford MJ, Krumholz HM. Mental disorders and use of cardiovascular procedures after myocardial infarction. JAMA 2000;283:506-11. 10. Schulman-Marcus J, Goyal P, Swaminathan RV, et al. Comparison of trends in incidence, revascularization, and in-hospital mortality in ST-elevation myocardial infarction in patients with versus without severe mental illness. Am J Cardiol 2016; 117:1405-10. 11. Raymont V, Bingley W, Buchanan A, et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: cross-sectional study. Lancet 2004;364:1421-7. 12. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med 2007;357:1834-40. 13. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA 1983;250:1296-301. DOI: 10.1056/NEJMms1610125 Copyright © 2016 Massachusetts Medical Society.
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