A Shot of Irish Whiskey

I recently stumbled across The Way We Die Now in the new books section of my local library. I hadn’t heard of it or its author, the Irish gastroenterologist Seamus O’Mahony, and I couldn’t find any reviews in American publications. Intrigued, I checked it out. It’s one of the more insightful—and simultaneously annoying—-of the  long list of books about death and dying.

The author makes several observations that are worthy thinking about. First, he says that dying is inherently messy and distressing; our attempts to sanitize it with what he calls the “syringe-driver” (Britishese for a “pump,” a way to deliver opioids such as morphine intravenously or subcutaneously or even directly into the central nervous system in a continuous, steady fashion) or with physician assisted suicide are vain attempts at controlling the uncontrollable. Second, and on a related note, he mocks the insistence by some that dying should be an occasion for “personal growth;” there’s nothing uplifting about dying and it is seldom an opportunity for repairing longstanding personal rifts. Third, he derides all self-proclaimed “death experts,” by which he principally means palliative care physicians, although he regards proponents of “narrative medicine” as similarly tainted. While acknowledging some of the contributions of palliative medicine, such as better pain control and the development of inpatient hospices, he feels strongly that the medical care of the dying should remain in the hands of primary care physicians.

Death is messy: O’Mahony discusses the writings of several public intellectuals, Philippe Aries, Ernest Becker, and Ivan Illich, on this subject. Aries, writer of the monumental history, Western Attitudes Towards Death, O’Mahony describes as a “romantic reactionary who looked back to an idealized, pre-industrial past” because he yearns for a peaceful death, at home, surrounded by family. Becker, author of The Denial of Death, argues that fear of death is the essence of being human and that each individual must sublimate his or her “fear of extinction with heroic projects designed to transcend death.” And Illich, iconoclastic writer of Medical Nemesis, laments the medicalization of death, exhorting us to “learn to cope” with the external constraints on the human condition.

I also was deeply influenced by these three writers: Aries because the historical perspective helps us see that the way things are today isn’t necessarily the way things have to be; Becker because I agree that the idea of an “immortality project” is tremendously useful for those of us who are aware of our mortality and don’t believe in an afterlife; and Illich because he opened my eyes to the notion that our world is excessively medicalized. Thanks to Aries, I have sections on history in many of my books—including my forthcoming Old and Sick in America, where I use an historical perspective to demonstrate the power of the Medicare program to shape the experience of illness. In homage to Becker, I called my last book, The Denial of Aging. And one of my earliest articles, a critique of the modern nursing home, decries its medicalization. I share with O’Mahony the view that death today is over-medicalized, that we shouldn’t expect to control the exact time and course of our dying, and that the clergy (including secularly oriented chaplains) and social workers are as necessary as medical doctors.

Death isn’t an occasion for personal growth: It’s not just dying that isn’t an opportunity for personal growth. The whole idea of “personal growth” rubs me the wrong way, at least as embodied in the work of Abraham Maslow, with his claims about self-actualization, or the “desire to become more and more what one is, to become everything that one is capable of becoming.” I’ve tended towards the view that each person should make the most of his or her own talents and abilities, and should seek satisfaction by applying those talents and abilities to improve the world. But whether or not self-actualization is every a desirable goal, surely it is too much to ask of someone who is dying that he or she continue to “grow.”

We shouldn’t leave death experts in charge: Palliative care increasingly sees itself as the specialty that is uniquely able to communicate, to break bad news, to help patients fill out advance directives, and to control pain and other symptoms. I am not as cynical as O’Mahony about the importance of communication and the possibility of physicians learning to be better at it—he drips with disdain as he asserts that “one of the more pernicious myths of modern medicine is the notion that a doctor with ‘communication skills’ and a sympathetic manner can somehow magically transmute bad news into something palatable…” Yet at the same time, he acknowledges that the “Liverpool Care Pathway,” an algorithm for caring for dying patients in British hospitals that was done away despite its many successes because of lapses in communication: “poor communication was at the root of virtually all complaints about the LCP.” And I think O’Mahony is mistaken when he ridicules the idea that breaking bad news is a special skill—the issue isn’t that when done well, patients accept the news with good grace; rather it’s that when done badly, patients feel abandoned, frightened, and angry. Finally, I share O’Mahony’s concerns about instructional advance directives—documents that purport to dictate exactly what medical procedure will be done in particular circumstances. He writes that “advance directives perpetuate an illusion that we can control, in minute detail, our treatment of an unpredictable illness at some unknown time in the future.” But to confound advance care planning, which can focus far more broadly on goals rather than on the specifics of treatment, with advance directives, that are either uselessly vague or excessively specific, is profoundly misguided. 

That said, I agree that palliative care principles—a view of the end of life as necessitating far more than just medical care, a belief that patients and families need information and guidance to be provided by a kind and compassionate professional, and a recognition that physical symptoms can often be ameliorated if not ablated---should be an essential part of what all doctors do.

So ignore the misunderstandings about the American health care system—O’Mahony says that nearly half of Americans die in hospice care because insurers discovered that “it saves money” and is seemingly unaware that this is predominantly home hospice, not institutional hospice, and that tthat the work from Mass General showing that early palliative care prolongs life in advanced cancer said nothing about cost. He likewise thinks that “in the US” death with dignity “has become a euphemism for euthanasia” (it hasn’t). Try not to mind the ridicule he heaps on both dignity therapy and narrative medicine, which he accuses of advocating that physicians take on a “quasi-sacerdotal role.” Appreciate instead the nuggets of truth: a physician’s job is the treatment of illness (not spiritual malaise or existential angst); the syringe-driver (or morphine pump) “allows for a softer, less frightening, final agony;” “palliative care should be at the center of what all doctors do;” and physicians should treat patients with kindness, courtesy, and yes, dignity.

Pushing Palliative Care

The July issue of Health Affairs, a leading health policy journal, is devoted to “advanced illness and end-of-life care.” While most of the articles focus on people who are dying, or at least who are likely to die in a matter of months, a few shining exceptions endorse a broader view. The center piece of this effort, and arguably of the entire issue, is the call to action by several palliative care luminaries and two senior figures from prominent foundations. This distinguished group of health care professionals put forward an idea at once radical and conventional: a national strategy for palliative care, to be spearheaded by the federal government (based in the Department of Health and Human Services) and grounded in a public-private partnership involving payers, regulators, and foundations.

The idea is radical because it would put palliative care, a field only established in the United States in the 1990s, at the forefront of care for the majority of America’s sickest, neediest, most vulnerable—and most costly—patients. It is conventional because it follows the model of earlier bipartisan initiatives that influenced the health care system, such as the Office of National AIDS policy. And it is conventional because it continues the tradition of specialist care established in the US after World War II, an approach to medicine that is uniquely American—and at the heart of what makes our system expensive, inefficient, and out of touch with the needs of sick patients.

Don’t get me wrong—there is much to like and admire about this proposal. It rests on the assumption that the essence of palliative care, an emphasis on symptom management, advance care planning (or as the authors put it, communication about goals and preferences), and psychosocial support to patients and families, is exactly what people with serious illness and functional impairment need. I agree. It endorses the view that this approach to medical care is best delivered by a team of health care professionals. I agree, although I would add family caregivers to the team. And it assumes that the best way to move forward is to expand palliative care expertise (through research, workforce training, and caregiver education), establish standards of care, and assure access—which will require oversight, regulation, and financial support. I’m not sure this is the only way forward, but it is probably the most expeditious way to proceed and parallels the successful models introduced in New Zealand and Australia. It’s the specialist part of the proposal that makes me uneasy.

The authors define palliative care as a “team-based specialty focusing on improving quality of life and relieving suffering,” though they acknowledge that “primary-  or generalist-level palliative care” is another variant, one that “integrates palliative care elements into the care provided by all clinicians serving the seriously ill.” Implicitly, they hew to the old, and I would argue antiquated, distinction between “curing” and “caring.” Standard medicine, in this view, is about curing; palliative medicine is about caring. But in today’s world, where most, although not all, diseases are chronic, cure is seldom what usual treatment is about. Physicians cannot cure diabetes or congestive heart failure, they cannot cure endstage kidney disease or chronic obstructive pulmonary disease, nor can they cure Alzheimer’s disease or many cancers. There are, to be sure, some diseases that can truly be cured, principally infectious ones, but also some cancers and surgical problems. But for the vast majority of serious conditions that afflict adults today, all treatment is palliative. Modern medicine may prolong life, but above all, it lightens the burden of disease, thereby improving quality of life.

Now, if most of today’s serious illnesses are chronic, and most of contemporary medical treatment is inherently palliative, then why limit treatment to palliative care specialists? Surely all physicians who provide care for conditions such as congestive heart failure or COPD should be palliatricized. Only in particularly challenging cases would palliative care specialists be called in. Just as most cases of high blood pressure and heart failure are treated by internists, not cardiologists, but heart specialists have a role in refractory or tricky cases, just as most cases of depression and anxiety are treated by generalists, not psychiatrists, but mental health clinicians have a role in a subset of specially complicated cases, so too should non-palliative care specialists take the lead in caring for most patients today.

American medicine is at a crossroads. We could expand specialty care further by growing the field of palliative care. This is certainly the approach we have taken since World War II to dealing with burgeoning medical knowledge. It’s part of why American medicine is so much more expensive and inefficient than medicine in other developed nations. It is precisely the reaction against highly specialized care that resulted in the kind of person-centered care that is at the heart of palliative care. It is probably the easier path—easier than trying to educate internists, cardiologists, neurologists, oncologists and all other physicians who provide care to patients with advanced illness. Or we could re-conceptualize much of modern medicine as palliative and get rid of the false dichotomy between curative care and comfort care. The century is still young. Let’s get this right.

Life in the End Zone will be on vacation until August 13.

        

           

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Growth and Transcendence?

In 2003, I decided to branch out from geriatrics and try something new. Well, a little new. I recreated myself as a palliative care physician. I’d previously been a bit dubious about palliative care, which in its early days focused principally on people with cancer and almost exclusively on people who were imminently dying. My interest was in people who were in the last phase of life, whether that phase would last days, months, or even years. My patients at Hebrew Rehab Center, where I had worked for the previous eleven years, had an average age of 88. They all had major limitations in their ability to function independently, otherwise they wouldn’t have been living at Hebrew Rehab: either significant physical problems or, a large proportion of cases, cognitive dysfunction, or both. I had come to realize that many if not all of them stood to benefit from a palliative approach to medical care. So why not embrace palliative care as a specialty, focusing principally on very old people, but also expanding my horizons to include younger individuals?

Palliative care was a good fit for me. I came to see the field as built on three legs: advance care planning (some people include communication here), psychosocial support, and symptom management. It is an interdisciplinary field and its focus is on supporting patients and their families through a difficult period of their lives. Much of the work involves making sure people understand their condition and what they are facing so they can make realistic and wise decisions about the treatments they receive as well as about where and how they live. Many of my colleagues shied away from such discussions; I thrived on them, feeling I could help assure that patients got the kind of care that made sense for them as they approached the end of their lives. Often, I rescued them from needlessly burdensome and ultimately futile medical interventions. There was, however, one strand of palliative care that disturbed me.

What bothered me was the tendency to exalt dying, to see dying as an opportunity for growth and transcendence. Now, not all palliative care physicians, hospice nurses, and other professionals are afflicted by this tendency, but for some it was kind of a religion. The business of palliative care, in this view, is to promote spiritual growth. And by implication, patients who don’t find dying uplifting, who aren’t able to reach new heights or discover new aspects of themselves, are failures.

I confess that I’ve never been enthusiastic about the American psychologist, Abraham Maslow, with his five (later nine) stages, culminating in “self-actualization,” or the experience of  “self-fulfillment” manifested by “peak growth experiences.” I’m even less enthusiastic about applying this model to people approaching the end of life.  Dying, and even living the last six or twelve or twenty-four months of life, is often a messy business. It seems to me to be good enough to be physically and emotionally reasonably comfortable. That’s hard enough to achieve. Ideally, it involves attaining a certain level of inner peace, of acceptance of the life one has led. But growth experiences? Euphoria? Joy? Wonder? That seems a bit much. So I was pleased to read the article in the Sunday NY Times about B.J. Miller, a palliative care physician who is a triple amputee and who until recently served as executive director of the “quirky” Zen Hospice Project in San Francisco.

Miller is by all accounts a remarkable doctor and human being. He is charismatic. He is intense. He has the capacity to truly “be” with people and help them come to terms with their condition and their lives. His story, well told by journalist Jon Mooallem, is inspiring. But he isn’t big on transcendence. In his own words, palliative care in general and Zen Hospice in particular aren’t about our need for death to be a hypertranscendent experience: “Most people aren’t having these transformative deathbed moments. And if you hold that out as a goal, they’re just going to feel like they’re failing.” Instead, the name of the game is to allow those who are dying and the people who love them to “live a succession of relatively ordinary, relatively satisfying present moments together.” Now that’s a philosophy that makes sense.

Antipsychotics: Use as Directed

Antipsychotic medication is effective for people who are psychotic—period. It’s been used for other conditions, such as the behavioral symptoms of dementia, and it turned out not to work. It’s been used for delirium, a type of confusion that often arises in older people or people nearing the end of life, especially in the hospital, and many doctors swear it’s the only medication that helps this distressing and dangerous disorder. But a new study from Australia suggests that antipsychotic medication doesn’t work for delirium either. 

The specific situation the Australian doctors looked at was delirium in the setting of patients with advanced illness, either patients on an inpatient palliative care service or patients enrolled in a hospice facility. Out of well over 1000 patients with delirium, they were able to identify 247 who were both eligible and willing to enter the study. This group, with a mean age of 75, were randomized to risperidone (a commonly used antipsychotic), haloperidol (another commonly used antipsychotic), or placebo. Patients were also given unspecified non-medicinal treatment, presumably things like a sitter (someone to stay with them) or relaxation techniques such as massage. They were also given subcutaneous midazolam, a very short acting anti-anxiety medication under the skin, for extreme agitation. The results? Patients receiving either risperidone or haloperidol had more severe symptoms of delirium than those treated with placebo. They also, not surprisingly, had more Parkinsonian symptoms, the main side effect of these antipsychotic medications, and were more likely to die.

This is a disturbing result. Not only did antipsychotics fail to help, but they also seemed to make matters worse. Now maybe there’s something different about Australians, or maybe the specific environment they were in—a palliative care service or hospice, though neither is clearly described—makes generalization to the American general hospital impossible. Or maybe people with delirium and advanced illness are somehow different from people with delirium who don’t have an advanced illness. And conceivably, other antipsychotics such as quetiapine or olanzapine are different. More likely, antipsychotics are simply a bad choice in the treatment of delirium.

Antipsychotic medications are remarkable medications—for the treatment of psychosis in psychiatric conditions such as schizophrenia and bipolar disorder. But maybe we should stop using them for anything other than these indications.

Life and Death in the End Zone

When President Obama announced a new, renewed war on cancer in January 16, saying “let’s make America the country that cures cancer,” many of us in the medical profession rolled our eyes. We’ve been at war with cancer at least since President Nixon issued the first declaration of war in 1971 and while we’ve won a few skirmishes, there’s a long way to go. The most impressive accomplishment over the last 50 years is a fall in the death rate from lung cancer—which is principally the result of fewer people getting lung cancer in the first place. And that’s related to a dramatic drop in cigarette use, not to better treatment.

To be fair, there are some areas of cancer care where progress has been stunning. Many forms of adult lymphoma can be cured. Ditto for some kinds of childhood leukemia. The treatment for a handful of diseases has gone from abysmally poor to stunningly successful with the introduction of totally new approaches to treatment—chronic myelogenous leukemia and selected cases of lung cancer are the poster children for the new world of targeted chemotherapy. But the other major advance in cancer care, which is less often touted than it should be, is in the treatment of dying patients.

We’d all love to be able to prevent cancer and we’d be thrilled to cure anyone who nonetheless developed the disease. But for now, and probably for the foreseeable future, cancer is very much with us. The latest statistics show that cancer accounts for 23 percent of all deaths, almost as large a proportion as for heart disease, which is responsible for 26 percent of deaths. And the good news—there is some good news here—is that far more patients who die of cancer receive the benefits of palliative care in their last days, weeks, or months of life. But what about the 77 percent of people who die but of something other than cancer? A new study reminds us that we don’t do nearly as well in caring for these people near the end of life.

Among patients who died in a VA hospital between 2009 and 2012, and there were over 57,000 such people, 74 percent of those dying of cancer received a palliative care consult at some point during what would prove to be the last 90 days of their lives. Among people who died of heart disease, lung disease, endstage kidney disease, or frailty, the rate was between 44 percent (for the frail) and 50 percent (for those with advanced renal disease). People who died of dementia and its complications fell somewhere in between, with 61 percent getting an inpatient palliative care consultation.

When the study authors looked at a couple of other indicators of dying well, they found the same pattern. People with cancer died in inpatient hospice units and had a DNR order at the time of death far more often than those with diseases of the heart, lung, or kidney, and people with dementia fell in between. For example, 43 percent of the cancer patients took their last breaths in a hospice unit but only 23 percent of those with cardiopulmonary failure. Likewise, roughly one-third of patients with kidney disease, cardiopulmonary failure or frailty died in the ICU, compared to only 13 percent of people with cancer. In this instance, patients with dementia fared best, with only 9 percent of them dying in the ICU.

The family members of patients who died were asked their opinion about the quality of end of life care their relatives received in the hospital. Using the Bereaved Family Survey, which 64 percent of families completed, the study found that 59 percent of families whose relative had cancer or dementia reported excellent over all care. Among the remaining families, 54 percent reported excellent care—which was statistically significant although not dramatically different.

People who die in one of the nation’s 146 inpatient VA hospitals may be different from the population as a whole. Most obviously, they are overwhelmingly male (98 percent). The VA has a long and venerable tradition of providing high quality, cutting edge geriatric care and has also taken the lead in the palliative realm. And studying only patients who die in the hospital—when about 70 percent of patients die somewhere else (for people over age 85, 40 percent died in a nursing home, 29 percent in the hospital, and 19 percent at home)--may not provide an accurate view of what happens to people near the end of life. But the study strongly suggests that while we still have a ways to go in optimizing cancer care, including at the very end, we especially need to redouble our efforts in caring for patients with non-cancer diagnoses. I would include dementia here: the study lumps the care of dementia patients together with the care of cancer patients as “good,” but the data suggest dementia is better seen as intermediate between the other two groups.

The trajectory towards death looks different for patients with congestive heart failure, endstage renal disease, chronic obstructive pulmonary disease or that nebulous disorder, frailty, than it does for patients with cancer. But that’s more reason, not less, for palliative care consultation. The JAMA Internal Medicine study does not address the barriers to receiving palliative care faced by this under-served population. I suspect there are barriers both on the physician side and on the patient side. The medical profession—and particularly cardiologists, pulmonologists, nephrologists, and neurologists—needs to endorse palliative care for everyone with advanced, life-limiting disease. But patients and families can help, too. Just speak up.

The Tipping Point

When I wanted to figure out whether it was time to replace our 2004 Toyota Camry, which runs beautifully and is the most comfortable and reliable car we’ve ever owned, I pulled out its repair records and graphed money spent on fixing the car as a function of time. What I was looking for was an inflection point or, as Malcolm Gladwell might call it, a tipping point. I wanted to know whether our annual maintenance expenses for the car had begun to creep up or, more importantly, if the curve had abruptly gotten a lot steeper. I was pleasantly surprised to discover that after the first couple of years, when our only costs were for oil changes, the annual costs had remained rock stable. The car has 125,000 miles on it; at this rate, it might make it to 200,000.

Now I can’t be certain that this calculation has any prognostic significance. It’s possible that there could be one very expensive year, a year when some particularly costly part needs to be replaced, but that large outlay is a blip on the curve; after that one year, annual expenditures might go back to normal. Drawing conclusions after looking at the high expenditure year and not waiting to see what happened the next year could lead to the erroneous conclusion that the vehicle had begun a period of relentless decline. And I have no evidence that even if my system makes sense when applied to cars, it would also work for people, but it set me to wondering.

The problem with people, and the reason that I’m hoping the car analogy might prove helpful, is that sometimes it’s hard to know when to stop “doing everything,” as patients often put it. Occasionally, it’s easy: there are patients, for example, with widely metastatic cancer who are clearly and unequivocally dying. They may not want to accept that the end is near, but it’s obvious to any good oncologist or palliative care physician. It is often obvious to families and even to the patient as well. There are patients with very advanced heart failure whose hearts can barely pump any blood and who are far too sick to withstand highly invasive treatment such as a heart transplant; they also may not want to acknowledge that they are dying. Their situation may be compounded if their doctors also don’t want to admit that they're dying, but there is compelling objective evidence that they are at death’s door.

Much of the discussion about death and dying these days centers on patients like these. And yes, it can be difficult emotionally to let go, but the truth is that these aren’t the hard cases. The hard cases are people who aren’t, as Katy Butler put it in her book about a better path to death, knocking on heaven’s door. The challenge is to figure out when to pull back before you reach that point and not necessarily to pull out all the stops, to go from maximal medical care to an exclusive focus on comfort, but rather to something in between. I have talked a great deal about this kind of intermediate care, particularly for frail older people. But how do you know when it’s time to switch gears—not necessarily from fourth gear to first gear, but perhaps to second or third?

Palliative care physicians have to deal with this question all the time. We have to figure out “eligibility criteria” for palliative care consultations. A recent state initiative in Massachusetts mandates that “suitable patients” be told about the availability of palliative care for people in their condition. Some useful guidelines have been developed: patients with heart failure who have had two or more hospitalizations or emergency room visits in the past year are good candidates; patients with dementia who have lost a great deal of weight or have had recurrent infections would benefit. Several interesting studies have identified “markers” for the beginning of frailty: a serious fall, for example, or admission to a nursing home. But the reality is that we don’t have a great way of identifying patients who are likely to be entering the final phase of their lives. It would be very useful to figure out who such patients are by using “administrative databases,” that is, insurance company records of doctor visits or hospitalization or lab tests. Hence my interest in inflection points.

I noticed recently that someone in my family had an abrupt increase in the monthly number of doctor visits, lab tests, and procedures. Instead of seeing her primary care doctor once or twice a year, she was going every month or two. Instead of very rare visits to sub-specialists—a trip to the ear doctor once a year to have wax removed, a visit to the dermatologist once a year for a skin exam, and an annual appointment with the eye doctor—she was seeing these specialists more frequently, along with other doctors: a surgeon, a rheumatologist, a gastroenterologist. I couldn’t help wondering whether she had passed a tipping point.

We have to tread carefully here. After a single, isolated acute illness, a patient might have a transient increase in “health care utilization,” as the economists put it. When mapping trajectories in the last year or two of life, we know that some patients don’t follow a steady path but instead become transiently frail—say after a small stroke or a hip fracture—only to return to their previous level of functioning after rehab.

So we have to plot out doctor visits and lab tests over a long enough period of time to be able to distinguish between a blip and an inflection point. If we insist on too long a time frame, then the approach ceases to be useful—by the time we know for sure that there was an inflection point, the person could be dead. 

I never used to like the people-as-machine metaphor—patients in many ways aren’t like machines whose parts wear down. But maybe, just maybe, old people are a bit more like old cars than I thought.

You Only Die Once

The palliative care community has been rallying to defend itself this past week in the aftermath of a scathing attack in the New England Journal of Medicine.  A short article written by Scott Halpern, a specialist in intensive care medicine, asserts that none of the approaches used by palliative care clinicians, and he singles out advance care planning tools such as physician orders for life-sustaining treatment (POLST) and videos depicting CPR, have been proven to work. He implies that the only way to know whether they are effective is to use the same criteria as those employed by the FDA in approving a new drug: typically, large, multi-center, randomized clinical trials. Superficially, this seems advisable—or even, to use the language that Medicare invokes in determining what it will cover—reasonable and necessary. It is, after all, a plea for evidence-based medicine, and surely all right-thinking physicians are in favor of using scientifically supported treatment. But to propose that we can learn all we need to know about how to provide excellent palliative care from randomized, double blind, placebo-controlled trials, studies in which two groups are compared that are identical in all respects except for the intervention being tested, is sadly naïve and hopelessly reductionist.

Advance directives are promoted to enable patients to shape their own destiny by choosing, with input from their doctors, how they will be treated when they are seriously ill. Advance care planning seeks to protect patients by safeguarding their autonomy in the event of incapacity; it also aspires to help all patients prepare for the future, even those who retain their cognitive capacity. It’s difficult for anyone to think clearly in the throes of serious illness; prior consideration of the goals of care can provide a useful framework for decision-making under stress. But if the point of advance care planning is to encourage patients to think about their goals and preferences and to allow them to have a say in their care, then readily measurable outcomes—things like how much pain patients experience at the end of life or how many procedures they have or how long they live or what their care costs—are the wrong endpoints.

A randomized trial doesn’t make any sense in this setting: we cannot compare patients who participate in advance care planning (cases) with those who do not (controls) and measure whether the planners are more likely than the non-planners to get the kinds of treatment they want. Such a comparison presupposes that everyone actually knows whether he or she wants attempted CPR or a ventilator or third line chemotherapy in much the same way that people know whether they prefer vanilla or chocolate ice cream.  But choosing between vanilla and chocolate requires that people have already tasted both and arrived at a conclusion about which they like more. With end of life medical treatment, patients seldom have any prior experience on which to base a decision. They need help in imagining what they will go through with the various alternatives. And they can’t sample the different possibilities and then decide (though a limited trial is sometimes possible): they will only die once. Nor is it accurate to believe that all patients have well-formed preferences, based on their religious beliefs or values, and that advance care planning simply informs the medical profession of those preferences. In many cases, patients don’t have clear preferences. The essence of good advance care planning is that it elicits preferences—it helps patients figure out what makes sense for them, given the realities of their medical condition.

I’m not suggesting that all formal study of advance care planning is meaningless. Demonstrating that patients who go through a planning process are satisfied with their experience is important. So is comparing different approaches to figure out which one is best received (or perhaps which patients like which strategy). Assessing whether patients who engage in advance care planning are more knowledgeable about their options than those who do not is also useful. So are studies of the implementation of the advance care planning process: finding out whether advance directives (written documentation of the planning process) are available to physicians at the time when decisions need to be made and measuring the concordance between those requests made in advance and what actually happens. All these sorts of studies have been done and collectively make the case that advance care planning is effective.

Although Dr. Halpern longs for a large, randomized controlled study to definitively determine whether advance care planning “works,” he seems to be aware of the inaptness of his FDA analogy. He therefore proposes analyzing electronic medical records using natural language processing as a way to draw conclusions about the efficacy of various palliative care interventions, including advance care planning. Nice idea, but I’m skeptical. It’s not that I’m hostile to natural language processing or totally ignorant of its power: my son has a doctorate in computer science with a specialty in natural language processing and does remarkable work studying how machines can determine the meaning of text. My husband is the co-founder of a tech start up that makes extensive use of natural language processing. It’s a promising technique with many as yet undetermined applications. Maybe it will even prove useful in evaluating advance care planning. But surely we don’t know that. In fact, there are strong a priori reasons for thinking that mining chart notes for words that describe a patient’s experience won’t do anything other than measure how likely a physician is to ask patients about their feelings and to record their answers.   

You might think, reading the New England Journal article, that all of medicine, apart from palliative care, has been subjected to the standards demanded by the FDA. You would be mistaken. A great many of the tests and treatments used regularly by physicians have not been tested with any kind of rigor. But even more to the point, physicians still use their judgment in deciding whether to use a given drug in a given patient, even when that drug has been shown in a carefully conducted randomized clinical trials to be superior to the alternatives. Randomized clinical trials are typically carried out in patients who have nothing wrong with them except the condition being studied. Those patients are rarely over age 65. That vaunted FDA-approved pharmaceutical is then used in 85-year-old patients with multiple chronic illnesses. Maybe it will work just as well. But maybe it won’t work at all or will even cause serious side-effects. It might hasten death. Does Dr. Halpern only use treatments in his ICU that have been demonstrated in a randomized trial to be effective—and to be effective in a patient with exactly the combination of heart failure and diabetes and dementia that the patient before him has?

Of course we need to evaluate the tests and treatments that we use in patients. But we should use whatever method is most appropriate for the situation we are studying. Sometimes it will be a randomized clinical trial. Often it will be a combination of other kinds of studies, some of which may be qualitative. Whether we conclude that the test or treatment should be used will depend on the preponderance of the evidence. Only rarely will we know, beyond a reasonable doubt, that we are doing the right thing.