Can We Talk?

This week revealed the long-awaited results of a trial of the “Serious Illness Program,” the meticulously designed and carefully studied project of researchers in palliative care at Dana Farber Cancer Institute and at the Boston think tank, Ariadne Labs. Initially conceived of as a “checklist” by checklist enthusiast and founding director of Ariadne, Atul Gawande, the program has evolved into an educational program for clinicians. Specifically, it involves teaching physicians to use the “Serious Illness Conversation Guide” to structure discussions with patients about end of life preferences and values. In this study, carried out at 41 “clusters” comprised of 91 physicians, nurse practitioners, and physician assistants working within the Dana Farber orbit, palliative care physicians did the teaching and provided follow up coaching. Ultimately, only 35 clusters providing care to 209 eligible patients had evaluable data. What the results showed is that despite all the effort spread over a four-year period, the Serious Illness Conversation Guide failed to achieve any of its primary outcomes.

The researchers hypothesized that if physicians were trained to use the researchers’ communications tool, patients would be more likely to have “goal-concordant care;” that is, the treatment they received would be aligned with their wishes. In addition, it was hoped, they would be more likely to experience a peaceful end of life. Neither effect was observed. There was less anxiety and depression among patients whose physicians had been trained to use the Serious Illness Conversation Guide, though perhaps a less-labor intensive or qualitatively different approach would have achieved the same effect.

What should we conclude from the failure of this communications guide to achieve its goals? The authors blame it on the small sample size and low patient accrual rate. They point out that their conclusions are of limited generalizability, given that the patient population was predominantly white, affluent, and college-educated. The more fundamental question, however, is whether the intervention itself is valuable. Despite its being well-received by physicians, perhaps the tool is just not an effective approach to educating physicians in communication skills. 

An even deeper assumption of this study is that the major problem with end of life care is poor communication by physicians. A very different perspective formed the basis of the Robert Wood Johnson’s program, Promoting Excellence at the End of Life, which focused principally on educating and empowering patients. This program, despite an enormous financial commitment and extensive evaluation, also failed, as evidenced by the 1995 SUPPORT study, “The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.” The reality, I suspect, is that we need to simultaneously affect both physicians and patients if end of life care is to change. 

One more possibility to consider is that despite what patients say when given theoretical options such as "would you rather die at home or in the hospital?" or "when you are at the end of life, would you prefer comfort care?" in fact, when faced with the reality of a life-limiting illness, patients want all possible efforts at life-prolongation, whatever the personal cost, and they expect their physicians to provide them. Maybe they don't want to discuss options with their physicians. The language of obituaries, "he passed away after a long battle" or after a "heroic struggle" very likely reflects contemporary culture. We need to study what patients want when they are faced with an actual illness, not with an abstract possibility.

Medicare Part E?

Congress first created the Medicare hospice benefit in 1982. During the first full year after the law went into effect, only 200 Medicare patients enrolled in hospice, accounting for less than one-half percent of the deaths that year. By 1986, seven percent of Medicare patients who died were enrolled in hospice at the time of death; in 1998, it was 19 percent and in 2013 it reached 47 percent. A new report from the National Hospice and Palliative Care Organization shows this percentage has remained fairly stable: in 2017, it was 48 percent.

The length of time that Medicare patients are actually enrolled in hospice remains woefully short, particularly for some diagnoses: while the average length of stay is 71 days, reflected a few very long stay patients, the median length of stay is only 24 days. In fact, fully 28 percent of individuals got between one and seven days of care, far less than most clinicians regard as optimal. Patients enrolled in hospice because of a cancer diagnosis tended to have the shortest lengths of stay in the program. Nonetheless, the historical shift towards hospice as a reputable and popular approach to end of life care demonstrates that we can introduce a new Medicare benefit package and expect it to catch on. The same happened with Medicare Part D, the drug benefit (though this was an add-on rather than a substitution), with enrollment going from 52 percent in 2006 to 71 percent in 2016. Medicare Part C, the partially privatized HMO-style benefit now known as Medicare Advantage, has also taken off: in 2003, only 13 percent of Medicare beneficiaries opted for such a plan but by 2017, 33 percent did. 

The time is ripe for adding a new alternative benefit package to Medicare’s offering: whether we call it Medicaring, the name preferred by Joanne Lynn, Director of the Elder Care and Advanced Illness division of the Altarum Institute,

or Intermediate Care, my term, or something else, it would provide enhanced home care services for frail elders and others with advanced illness in exchange for limitations on access to intensive, expensive, burdensome, and seldom beneficial treatments such as bone marrow transplantation or open-heart surgery. 

Americans tend to dislike or at least be very skeptical about any kind of limits to care. But often the problem is that we focus on what people cannot have rather than emphasizing what they can have—and what they often need and want. In fact, I think one reason that patients only enroll in hospice very late in the course of their illness is that hospice is presented as the withdrawal of care, the discontinuation of care, rather than as the substitution of one approach to care for another. Many patients may be unwilling to forgo treatment altogether, which is how hospice is frequently presented, but are eager to choose a less invasive, less burdensome form of care: infusions of very toxic chemotherapy drugs in the physician’s office every week or two may be rejected if there is an oral medication they can take at home that has far fewer side effects. But if the only alternative is certain death, chemotherapy looks far more attractive.

Important and interesting work has been done on developing and implementing programs to care for people with advanced illness or frailty, such as the Coalition to Transform Advanced Illness Care's 2017 report. The way forward is now to create a Medicare benefit to accommodate this approach.

One of the major mile posts in biomedical ethics was the passage of legislation that today’s medical residents—and I daresay most Americans—have never heard of, the Patient Self-Determination Act of 1990. Certainly all those who inveighed against “death panels” and who balked at the idea that the Affordable Care Act might include provisions allowing Medicare to reimburse for advance planning conversations never heard of it. This act, as its title indicates, was intended to put patients in the driver’s seat, to allow them to weigh in on the approach to medical care they would get at the end of life, even if they were unable to participate in decisions at the time those decisions need to be made. It officially sanctioned advance directives by enshrining them in federal law. 

What the PSDA says is that any health care institution receiving government funds, which is to say virtually all health care institutions, is obligated to ask patients if they have an advance directive, to offer them the opportunity to complete one if they don't, and to prominently display a copy of that directive in the medical record if they do. The PSDA put advance care planning on the map. It also put advance care planning squarely in the legal domain and that, as the authors of a new article in the New England Journal assert, was a big mistake.

What “Delegalizing Advance Directives—Facilitating Advance Care Planning” argues is that a major reason that advance directives haven’t caught on is that they typically have to be signed by two witnesses (or a notary), and in some states (North Carolina, South Carolina Virginia, and Missouri) a notary; some states also require use of a specified form. I agree that these requirements are an impediment to widespread use of advance directives. I agree that the POLST (Physician Orders for Life-Sustaining Treatment) model, which uses a medical order rather than a legal document and just requires the signature of the patient and the physician, puts advance care planning unambiguously within the medical sphere. But I don’t think that simply allowing patients or prospective patients to designate a health care agent, or surrogate decision-maker, without use of a mandated form and without witnesses would solve the problem. 

The real problem is not just that people don’t bother with the forms and that the forms don’t always make it into the hands of clinicians. The real problem, as Charlie Sabatino of the American Bar Association put it in a 2010 article, is that advance directives are based on a transactional view of advance care planning rather than a communications model. And what we now understand is that advance care planning has to be founded on dialogue between a clinician and a patient.

The problem with advance directives is not that they have to be witnessed or written on special forms. If that was the problem, we’d expect to see much higher utilization rates in Idaho, where there are no witness or notary requirements, and somewhat higher utilization rates in Utah, where only one witness is required. The problem is that they reduce advance care planning to completing a form, to checking off boxes on a list. 

In Idaho, for example, individuals have the opportunity to say that if they are ever unable to communicate and “have an incurable or irreversible injury, disease, illness or condition,” and that a medical doctor, based on a physical examination, has concluded that the “injury, disease, illness or condition is terminal” and that “death is imminent” no matter what is done, and that the “application of artificial life-sustaining procedures” would only artificially prolong life, then they would (or would not) want medical treatment and procedures, nutrition and hydration, hydration but not nutrition…

The lawyers who design such forms believe they allow people to indicate with great precision just what they would want and under what circumstances they would want it. But in fact, as many others have observed, it is far from clear what exactly it means for a condition to be terminal. I would argue that dementia is a terminal disease—but with a typical time course of about five years from the time of diagnosis to death. Ah, you might say, but the advance directive forms include the qualifier that death must be imminent. But that's not good enough. How imminent? In a matter of hours? Days? Months? And if we could agree, based on a careful reading of the text of the directive (which I’m not so sure we can), that what is meant is the person has a  disease that in the normal course of things results in death within six months and that the person's disease has progressed to the point where death will occur within at most days; then is it really so useful to specify that in those very limited circumstances we wouldn’t want treatment that won’t make a difference anyway? Is that all the advance care planning is about—stopping futile treatment in the 72 hours of life? And what about “treatment” that is symptomatic, that is intended to ameliorate suffering, rather than to prolong life, though it might, as an unintended consequence, prolong life. Are such “medical treatment[s] and procedures” to be rejected?

Advance care planning, as we have come to understand it over the last several decades, is not about procedures or treatments—or checking boxes. It is about reflecting on what’s important, in the context of a realistic understanding of a person’s medical condition. It's about figuring out what medical treatments are most consistent with achieving whatever it is that the patient deems important in life. 

Making it easier to complete a form will not transform advance directives. Conceptually, advance directives are legal documents, whether or not they must be witnessed or notarized or completed on special paper. What people need is not a better document. It’s a different process, a process that is built on communication and that deals with the purpose of medical treatment, not the technical means of achieving those ends.

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Take Your Pick

The "End of Life in Very Old Age” study presents a fascinating glimpse into the lives and views of America’s oldest old. An ancillary investigation to a much larger study, the Health, Aging and Body Composition Study (Health ABC), which looks at the association between body composition and mobility decline, this particular investigation involved conducting quarterly interviews with Health ABC enrollees beginning in year 15 of the longitudinal study—that is, when they were between 85 and 89 years of age. These interviews included questions about preferences for aggressive care, daily symptom burden, health decision making, and concerns about health and health care. A total of 1227 patients (or proxies speaking on their behalf) completed the interviews. The results appear to show a marked penchant for aggressive care, moderated only by mobility difficulties. This may be accurate, at least for the population studied, which includes a random sample of white Medicare beneficiaries and all black community residents in 2 cities, Pittsburgh and Memphis. Or it may reflect widespread misunderstanding about what they various proposed interventions—attempted CPR, ventilator treatment, feeding tubes, dialysis, open heart surgery, an implanted defibrillator, or diagnostic tests including MRI, ultrasound, and angiogram.

The study authors stress two findings which they seem to find surprising. First, there was no association between reported “daily symptom distress” such as pain, nausea, constipation, or trouble sleeping, and EOL preferences. Second, there was an association between mobility, the ability to walk a quarter of a mile, and EOL preferences. From these observations they conclude that we should pay much more attention than we typically do on functional status, the ability to do the most basic tasks necessary to have some semblance of an independent existence. That’s been a geriatric mantra for decades. The authors also acknowledge in passing, that the preference for aggressive EOL care was associated with race and to some extent gender, with black men most likely to want “everything done.”

What the authors do not discuss, and what was not part of the survey, is the extent to which participants understood what any of the ingredients of aggressive care would be like for them. Fully 59 percent of the participants who were interviewed directly said they would want CPR attempted if their heart stopped. But did they have any idea that among patients over age 85 who undergo CPR in the hospital, only 4.5 percent are discharged both alive and with minimal neurological deficits?  A total of 49 percent said they would want to be put on a ventilator if they had trouble breathing. Did they know that you cannot speak or eat while on a ventilator? Did they distinguish between time-limited treatment and chronic, maintenance treatment? The idea of a defibrillator was also in general well-received (58 percent favoring it), though not as enthusiastically as diagnostic tests such as angiograms and MRIs (88 percent). Interestingly, dialysis, which many people realize is a 3-times a week, multi-hour procedure, was endorsed by a smaller percentage, 34 percent, and feeding tubes maintained in place longer than a week were acceptable to only 13 percent. I can only speculate that prospective patients intuitively understand that having dialysis or a feeding tube would be burdensome but have little awareness of the discomforts—and in many cases of the limited efficacy—of CPR, ventilators, defibrillators, or open heart surgery.

Just as we need to move away from intervention-specific advance care planning, so too we need to stop trying to measure preferences for care near the end of life by focusing on the means rather than the ends of treatment. It’s possible that the people interviewed who said they would favor what the study authors refer to as “aggressive” treatment knew perfectly well what was entailed and were interested in life-prolongation, no matter what that entailed. But I rather doubt it, particularly in light of their being skeptical of chronic dialysis or feeding tube use. 

We need to educate people about what works and what doesn’t work and what hurts and what doesn’t hurt in the last phase of life. Even more important, we need to talk to them about what matters most to them and then rely on physicians to help them understand what tests and treatments are most conducive to achieving their objectives.

All Things Dartmouth

For the last 20 years, the Dartmouth Institute for Health Policy and Clinical Practice—it’s added a few words to its name over time—has produced the “Dartmouth Atlas,” a compendium of information about the American health care system, principally culled from Medicare data. Some people are highly critical of the Atlas because it analyzes health care resource utilization (including hospital, ICU, SNF, physician visits, medications, procedures) in the last six months or the last two years of life—which requires starting with the time of death and looking backwards. The problem with this approach is that we don’t know in advance who’s going to die when, at least not with any degree of certainty. It’s easy to use the retrospectoscope and say that a patient shouldn’t have spent so much time in the ICU or gotten a feeding tube, given that he was going to die soon. But the intent of sending him to the ICU or putting in the tube was to enable him to live longer, or at least better, and it wasn’t so clear up front that the endeavor would fail.

The critics have a legitimate gripe, but I confess that for all its faults, I love the Dartmouth Atlas. I’m fascinated by its principal finding, which is that whenever you look at “preference-sensitive care,” at areas of medical treatment where there is no unequivocally right answer for what to do, what happens to patients varies enormously across the country. And while some kinds of care track together—in Portland, Oregon, patients spend less than the national average number of days in the hospital and in the ICU and more days enrolled in hospice, whereas in New York City, they spend a higher than average number of days in the hospital and the ICU and fewer days enrolled in hospice—the data are full of surprises. Given my general level of enthusiasm for all the reports that come out of the Dartmouth Atlas project, I was very happy to discover, by chance, I might add, that a new report was released just last week, “Our Parents, Ourselves: Health Carefor an Aging Population.”

Much of what’s in this report covers familiar ground. It summarizes the data on the average number of days that older patients spend in the hospital in the last six months of life, it talks about where people die, and reviews how much, or rather how little, time they spend enrolled in hospice. But some of what’s here is new, or at least presented in a different way, and it’s enlightening.

Because the focus of the new report is on the older patient’s experience of the health care system—which incidentally is what the book I’m writing is about—the authors have come up with a few ways of quantifying that experience. They define a new measure, the average number of “contact days,” by which they mean the total amount of time a person interacts in some way with American medical care, the number of days they have a doctor’s appointment, the number of days they go for a test or a procedure, and the number of days they are inpatients in a hospital or a skilled nursing facility. 

I’m not entirely satisfied with a measure that counts a day on which you have a doctor’s appointment or a test as a full day rather than attempting to add up the number of hours you actually spend going to the office, waiting, being seen, and coming home and translating that number into a fraction of a day, but it’s a good first step at measuring the intensity of exposure to the health care system. For what it’s worth, the average number of “contact days” in 2012 was 17, but in certain areas, such as Long Island, New York, it was 25.

Other useful sections of the report address “areas needing improvement” and “areas where we have made progress.” The list of areas needing improvement starts with screening for prostate cancer in men over 75 (we shouldn’t be ordering PSA tests for this group but 20% of older men get them overall and 30% of men in Miami get them). Similarly, there’s screening for breast cancer in women over 75. That’s an area that’s more controversial since its utility depends on life expectancy and there are plenty of 75 year old women who will live another 10 or 15 years and thus may benefit from screening. 

Then there’s late referral to hospice: as many as 27.3% of the residents of Fort Lauderdale who die in hospice were enrolled in the last 3 days of life, way too late to reap much benefit. Next comes feeding tubes in patients with advanced dementia, a subject near and dear to my heart since I’ve written quite a bit about it. It’s still the case, or it was in 2012, that 6% of people who die with dementia got a feeding tube in the preceding 6 months—though this happens less than 2% of the time in Portland, Oregon and as much as 12.8% of the time in Los Angeles. 

Finally, there’s the old favorite, days spent in an ICU in the last 6 months of life. Interestingly, the situation here has gotten worse, if you assume that the time in spent in an ICU before death is very uncomfortable and not at all beneficial. How much time people spend in an ICU is also tremendously variable, ranging from 1 day to 9 days, with La Crosse, Wisconsin at the low end of the spectrum and Miami and LA at the upper end.

And then there are the areas where we’ve made progress, according to the report. There is less use of high risk medications, there is more widespread monitoring of diabetics, there has been a decline in preventable hospital admissions, and there’s been a decrease, albeit slight, in readmissions to the hospital within 30 days of discharge. Finally, the opportunities for coordination of care and for advance care planning, which for some reason are lumped together, have increased.

What’s missing from the report is a compelling explanation of why the things that have improved have gotten better and why those that haven’t improved are still problematic—and why there’s so much variability in what happens where. The authors argue that there are different factors at work: there’s less use of high risk medications because one of the bad actors (propoxyphene, or Darvon) was taken off the market; and there are fewer readmissions because there’s better discharge planning. But Darvon was taken off the market in all 50 states and the rate of use of so-called high risk medications varies between 10% and 30%, depending on geography. Why? The national average for readmissions fell (though not terribly dramatically) between 2008 and 2012, but why did it fall for some hospitals and not others? If we know how to prevent readmissions, at least some of them, why doesn’t everybody do it?

I guess I still need to write that book.

Palliative Care Comes of Age

Last week, the New England Journal of Medicine published a short review article entitled “Palliative Care for the Seriously Ill.” Eleven years ago, the NEJM also published a review of “Palliative Care,” at that time putting it in the section of the journal called “Clinical Practice.” What has changed over the decade? What has remained the same?

Comparing and contrasting the two short articles, both of which emanate from the Mount Sinai School of Medicine, reveals some interesting changes. Perhaps the first change worth noting is that the Mount Sinai School of Medicine is now the Icahn School of Medicine at Mount Sinai. That a venerable school of medicine should now be named after a business magnate known as a ruthless corporate raider instead of after the alleged birthplace of the Ten Commandments says worlds about developments in the field of medicine. Palliative care itself has been affected by the widespread corporatization of medicine, with 2/3 of all hospice providers for-profit in 2013, compared to 5% in 1990. But the article rightly concentrates on describing the field of palliative care rather than one specific program, hospice care. The authors carefully distinguish between the population who stand to benefit from palliative care--those with serious illness--and those who may benefit from hospice care--those who are in the last months of life.

What stood out reading the new and older articles side by side is that in 2004, Morrison and Meier were at pains to explain the rationale for the very existence of palliative care. They emphasized the under-treatment of symptoms such as pain, delirium, and nausea in very sick patients. They discussed the fixation of American medicine on cure, even when cure was not possible, and the false dichotomy between cure and comfort. In 2015, Morrison, writing this time with Kelley, a young colleague (also a marker of change as a new generation of physicians rises to prominence in palliative medicine), do not feel the same need to justify palliative care. To the extent that they do feel obligated to explain why palliative care should exist, they provide data, itself a welcome development over the past decade, offering a graph showing the prevalence of ten specific symptoms in advanced illness, broken down by disease category (cancer, congestive heart failure, chronic obstructive pulmonary disease, advanced kidney disease, dementia, and AIDS).

Another area discussed in some detail in the new article but scarcely mentioned in 2004 is the various delivery models for palliative care. Ten years ago, palliative care consisted principally of in-hospital consultation and of home-based hospice. Today, it is both of those but it is also increasingly provided in the outpatient arena and in the nursing home.

The discipline of palliative care is much the same today as it was a decade ago: it is based on the three-legged stool of communication (which includes establishing the goals of care and planning for the future), symptom management (which addresses symptoms from pain to constipation), and psychosocial and spiritual support (which is targeted to families along with patients). But it has grown into a mature field with a small but robust and burgeoning research base. It is an interdisciplinary form of care that offers an “added layer of support” to conventional care (words chosen from market research done by the Center for the Advancement of Palliative Care); it is for the “seriously ill,” (as the authors quietly insert into the title of their article), not just for the dying; and it is for people of “any age,” not just for older people (who seemed to be the primary target in the earlier article that emphasized the graying of the population).

The field has made remarkable strides. I have just one nagging concern. In its eagerness to view palliative care as a supplement to rather than a replacement for conventional care, the field has a tendency to ignore the important truth that when palliative care clinicians review the prognosis and the options with patients, the conclusion may well be that less is more. And in its excitement over the surprising finding in one important study that patients with palliative care may actually live longer than those receiving usual cancer care, the field glosses over the importance of making trade-offs between life-prolongation, comfort, and maximizing function. Sometimes, to be sure, there are no life-prolonging options: the aggressive chemotherapy that oncologists offer and patients seize upon simply won't work and may paradoxically shorten life. But sometimes--and I would argue more often--there is a potentially life-prolonging option. That course of treatment, however, is typically very risky. Its likelihood of succeeding may be extremely small and its probability of causing misery extremely high. What palliative care does in this scenario is to lay out the alternatives and figure out which makes most sense for a patient and family in light of their goals of care. What palliative care does not do, however, is deny the importance of making trade-offs. 

Perhaps when the New England Journal publishes a review article about palliative care in another ten years, the authors will not feel the need to view the field as an add-on, but rather as the more realistic and comprehensive approach to the management of advanced illness. The truth is that most of the diseases that kill people today--heart disease, many cancers, and dementia, for example--are chronic diseases. They cannot be cured. All treatment for these conditions is inherently palliative. Cardiologists, oncologists, and neurologists all practice palliative care all the time; they just don't do as good a job as they might. Here's to Palliative Care 3.0!

Home Alone

Last week, I made the politically incorrect suggestion that patients don’t always know what it is that they don’t know. Continuing my contrarian streak, I’m going to suggest this week that home isn’t always what it’s cracked up to be, at least not for frail older people.

A recent study provides valuable information about the homebound population in the US. Examining cross-sectional data from the National Health and Aging Trends Study (collected in 2011), the authors were able to identify a nationally representative sample of just over 7500 non-institutionalized Medicare beneficiaries who were 65 or older. What they found is that 5.6% of the elderly, community-dwelling population were completely or mostly homebound. Extrapolating to the entire country, that comes to nearly 2 million people, where “completely homebound” refers to someone who never went out in the last month and “mostly homebound” refers to someone who went out rarely (once a week or less) in the last month. Another 5.3 million older people are “semi-homebound,” which means they go out at least sometimes (twice a week) but not by themselves (somewhat over one million people) or only with difficulty (the other 4 million people).

Interestingly, the study observes that the semi-homebound individuals are very similar to the completely homebound individuals in terms of disease burden and functional capacity. This suggests that social support is as important as medical conditions in determining the course of a person’s life. Environmental and psychological factors may also play a role. It is entirely reasonable to conclude--as the authors do--that providing adaptations such as stair lifts or grab bars and assistive devices (walkers and canes) could transform a person from being homebound to being semi-homebound or even from being semi-homebound to non-homebound. Other services such as home-based primary care could also make a difference.

The authors of the new study are also right to conclude that the information they have uncovered could “inform improvements in clinical and social services” for frail older people.  But it is equally reasonable to ask whether at least some of those dependent, disabled individuals might not be better off in a well-designed facility that offered social stimulation as well as physical assistance and medical care. I made a similar argument years ago in my paper, “Long-term care options for the frail elderly.” I made a similar argument just a few years ago in the paper “No place like the hospital,” where I suggested that the widely quoted claim that 80% of people want to die at home but only one-third do reflects what people say they want when they aren’t dying. When they actually get sick and are facing imminent death, at least some of the people who were previously so sure they wanted to die at home discover that they feel more secure and better cared for when they have round-the-clock nursing care and some of the technological interventions of the hospital. When hospitals were terrible at pain management and resolutely focused on maximally invasive medical treatment, they weren’t good places to die. As the availability of palliative care in the hospital has increased and the quality of pain management has improved, hospitals aren’t always such an awful place to spend one’s final days. 

The same is true for nursing homes. When the quality of nursing homes was abysmal, when residents sat tied up in chairs, lined up along dark, dingy corridors, and when they developed pressure ulcers because they were neglected by poorly trained staff, of course nursing homes were to be avoided. As standards were raised and resident-centered care took root in nursing homes, the quality of care improved. Sometimes nursing home care is superior to home care.

It’s still true that nobody wants to live in a nursing home. It’s also true that the majority of people don’t want to die in a hospital. But what many of those people really mean when they say they don’t want to live in a nursing home is that they don’t want to be very disabled and dependent. What they really mean when they say they don’t want to die in a hospital is often that they don’t want to die. 

It's all too easy--and too commonplace--to confuse an undesirable state of being (disabled, dying) with a site of care (the nursing home, the hospital). But preventing disability and death is one thing; figuring out where to go when frailty develops or death is imminent is something else entirely.

Getting to Yes

In an insightful new book, medical anthropologist Sharon Kaufman persuasively delineates the forces that lead older patients to “yes.” Despite all the rhetoric about shared decision-making, about patients making choices based on their personal values and preferences, an interlinked series of powerful forces conspire to shape that “decision.” It’s not surprising, according to this compelling account, that invasive technology is used so extensively in older patients, with the threshold for what is considered old constantly rising.

The first step, in Professor Kaufman’s account, is that the scientific establishment, fueled by NIH and increasingly by private industry (medical device makers and pharmaceutical companies), develops ever more sophisticated, potentially life-extending technology. If the FDA finds the technology to be “safe and effective,” then Medicare, the insurer for virtually every person over age 65, will by and large pay for it. Once payment is assured, the technology quickly moves from being “acceptable” to being the “standard of care.” After all, surely whatever is on offer must surely be advisable. And if it might prolong life, and it’s free (or almost free), why not? Finally, the families who will often be the ones to administer or monitor the technology if patients avail themselves of it, and who will take mom or dad to the hospital when something goes wrong, find themselves in a position of feeling morally required to support the technology’s use. Sometimes that even means donating a kidney or resigning one’s job.

Kaufman concludes that there’s no simple fix to a health care system that relentlessly provides more and more to older and older people, regardless of cost and despite its burdens. Simple “decision aids,” with their focus on rational choice and clear depiction of risks and benefits, cannot possibly counteract the “ethical field,” the social, cultural, and market-driven environment in which patients along with their families and their doctors operate. But I think there is a ray of hope. And it may be a brighter ray than what Kaufman proposes, which is that if only we understood the complicated underpinnings of today’s reality, an understanding that she goes far to advance, we would be in a better position to change that system. 

I suspect that her linear model of the forces propelling us towards ever more technology in medicine—the scientific enterprise, the FDA, Medicare, societal norms, and patient/family morality—is actually more complex. It’s very likely a series of feedback loops, with each factor influencing and being influenced by all the others. Yes, scientific discoveries and technological inventions, when their efficacy is demonstrated in clinical trials, lead to Medicare reimbursement. But the awareness on the part of the device manufacturers and the drug companies of the circumstances under which Medicare will pay for their products also shapes what avenues of inquiry they pursue. Yes, patients’ understanding that Medicare will pay for a device or a procedure shapes their view of the standard of care. But patients’ expectations also influence Medicare’s coverage decisions.

If the health care system is even more complex than “Ordinary Medicine” suggests, doesn’t that make reform even more hopeless? Not necessarily. Precisely because the current system is sustained by multiple feedback loops, it may be possible to effect change by applying pressure on a single lever that operates in multiple loops. That lever is the Medicare program. We may not be able to reform capitalism or to change the tendency for patients to assume that whatever is paid for by health insurance constitutes necessary care. But we just might, someday, be able to modify Medicare.