Tell Me A Story

Come then, and let us pass a leisure hour in storytelling, and our story shall be the education of our heroes. (Plato)

The story—from Rumpelstiltskin to War and Peace—is one of the basic tools invented by the human mind for the purpose of understanding. There have been great societies that did not use the wheel, but there have been no societies that did not tell stories. (Ursula Leguin)

In his new book, The Conversation, my friend and colleague, Angelo Volandes, makes the case for using videos to help patients and their families understand what lies in store for them as they approach life's end. He quotes one of his patients—a working class Irish-American with advanced brain cancer: “if a picture is worth a thousand words, a video is worth hundreds of thousands.” And Angelo’s videos can be very helpful: they are designed to be clear, short and accurate, to show real patients with real diseases undergoing actual treatment for their illness. But the irony is that the power of this book, and it is powerful, is all in the words.

Joining the ranks of other prominent writer-physicians such as Abraham Verghese, Oliver Sacks, Jerome Groopman and Atul Gawande, Volandes tells stories. His most engaging are those that are the most intensely personal: the wife of a professor he worked for as an undergraduate who terrified her husband—and the young student preparing meals for them—as she coughed up blood and struggled to breathe; and his own father, who decided after a series of debilitating cardiac events that he would not want to undergo attempted CPR. The stories illustrate with great poignancy the different ways that patients experience the final stage of their lives. His message is that it’s important to write your own story: whether you have a good ending or a bad one depends not so much on the path you follow as on whether you chose that path. As he puts it, “there are no right and wrong decisions about medical care at the end of life; rather, the value lies in making a fully informed choice.”

Really? Are all choices equally good? In The Conversation, we learn about 10 patients, among whom 6 make explicit decisions about what kind of medical treatment they want, and 4 are unable to make decisions so the care they receive is what their families or their doctors recommend. Most of the patients in the book who make their own choices, either after watching Angelo’s videos or after going on a guided tour of the ICU or dialysis unit to see what lies ahead (nobody in this book thought about their preferences any time before the end was imminent), choose to focus on comfort; only 2 persist in their wish that the doctors “do everything.” And the 4 patients who did not participate in the decision-making themselves, all of whom underwent aggressive, sometimes “brutal” treatment in their last weeks or months of life, are presumed to have gotten treatment that they couldn’t possibly have wanted, had they only been engaged in the process of deciding.

Consider the Italian matriarch who had a feeding tube and repeated courses of treatment for pneumonia after developing advanced dementia. She suffered mightily in her “last miserable weeks” of life, as did her family. Or take the elderly Ukrainian-American with lung cancer who underwent repeated attempts at CPR and assorted invasive procedures even though he had “one foot in the grave.” Young Angelo, the physician at the center of these resuscitative efforts, describes the treatments as putting “terminal cancer patients through torture.” The presumption is that if only these patients had known the truth about what modern high tech medicine does to dying patients, and if only they had then been asked what they wanted, they would have opted for comfort care.

So it’s not just that most patients don’t want treatment that has virtually no chance of doing anything for them other than causing extreme discomfort; it’s that no patients want this. The reason that any of Angelo’s patients opted for maximal medical treatment is that even though they understood what the treatment entailed, they didn’t fully  accept their own situation: they did not believe that they were dying. The husband of a young woman dying of metastatic breast cancer comments that “you never know what new chemo is on the way,” even though his wife has hours to live and no drug is going to descend from the lab deus ex machina to save her. The 79-year old African American with end-stage kidney disease says he’s “been through harsher things than this” and “God has given me a second chance before.”

Physicians cannot force patients to accept our diagnoses and prognoses, assessments made based on scientific training and clinical judgment. We cannot require them to accept our recommendations for treatment. Nor, in contemporary society, can we withhold what we believe to be futile treatment as long as we are not 100% certain that it cannot possibly prolong life, even by a few hours. But we can do a better job informing patients and families of the reality as we see it so that they can choose wisely. Videos can help, but above all, so can stories, stories that acknowledge our mortality and capture the realities of advanced illness.The real power and the beauty of The Conversation stem not from its exhortation to have a conversation about preferences for end of life care, and not from its discussion of videos that can jump start the conversation, but rather from the stories themselves.

Kicking the Bucket

Even though you think and behave perfectly normally, you might already have Alzheimer’s disease. In fact, you might warrant the label of  “pre-clinical Alzheimer’s disease” for a full 20 years before graduating to the full-fledged condition. That according to the latest definition of Alzheimer’s put forward by the National Institute on Aging together with Alzheimer’s Association 3 years ago.

Heralded as a radical departure from earlier clinical diagnostic criteria, the new definition is in line with how we think about other chronic conditions such as cancer or heart disease. Normal cells often mutate into cancerous cells and proliferate for a long time before there are enough of the to produce symptoms—and a cancer diagnosis. Plaques may be deposited in the lining of coronary arteries long before they narrow blood vessels enough to impair blood flow to the heart resulting in chest pain. In all these cases, the hope is that we may be able to intervene during the pre-symptomatic phase, altering what is currently the inevitable trajectory of illness. In the case of Alzheimer’s, detecting various “biomarkers” in the blood or cerebrospinal fluid would signal the need for some kind of biochemical intervention. The problem has been that we don’t as yet have any such intervention. For now, the main purpose of early diagnosis is to identify people who could enroll in research on the prevention of Alzheimer’s—assuming the diagnostic techniques are sufficiently reliable and the benefits of research outweigh the burdens of knowing what the future has in store.

Philosopher Dena Davis makes a different case for the value of early diagnosis in this month’s Journal of Medical Ethics. Knowing that a person is destined to develop dementia, she argues, is invaluable so he can kill himself.

The option of “rational suicide,” as Davis calls it, is based on wanting to avoid becoming dependent and on wanting to spare family the burden of caregiving, as well as the potential loss of an inheritance. The diabolical nature of dementia is that if you wait until you are a burden, until you can no longer do any of the things that once gave meaning to your life, then you will most likely have reached a stage where you have also lost the ability to take your own life or even to remember that you ever wanted to end your life if you developed advanced dementia. And those countries (such as Switzerland, Belgium,  and the Netherlands) and those American states (Montana, Oregon, Washington, and Vermont) where Physician Assisted Suicide (PAS) is legal all require that the patient be of sound mind at the time the request is made and that she have a prognosis of not more than 6 months. So PAS is not generally an option for people with dementia.

There is a gentler alternative to pre-emptive suicide, and that is drawing up an advance directive that authorizes the withholding of life-prolonging medical treatment in the event of dementia. But Davis discounts this option, claiming that courts and ethicists increasingly dispute the right of a person, while cognitively intact, to make any claims about the interests of his future demented self.

In fact, opponents of pre-emptive suicide such as Rebecca Dresser, whose response to Davis appears in the same issue of the ethics journal, say something a little different. They do not assert, as Davis contends, that competent Jane Doe should have no say over what happens to incompetent Jane Doe. That would make little sense as much of the point of advance directives is to plan for possible loss of competence. Rather, Dresser argues that “precedent autonomy,” in particular the choices made when competent, should be tempered by considering the present interests of demented Jane Doe. This is the dilemma of the happy dement that Dresser addressed in an earlier article on the subject. 

Suppose that today I am an anxious, driven, competitive person. I find the prospect of being unable to write articles or give talks or care for patients intolerable. But suppose that one day, I do lose my ability to write articles and give talks and care for patients. And suppose that lo and behold, I am no longer anxious or competitive. Instead, I am relaxed and cheerful. I smile at everyone indiscriminately. I am no longer inhibited and I clap my hands and tap my feet to all kinds of music. I’m no longer a picky eater and instead I say everything I’m served, no matter how bland or poorly prepared, is delicious. I don’t recognize my children but am glad to see them, just as I’m glad to see the aide who dresses me in the morning. Surely my best interest is in continuing to live as long as I can remain in my current state.

The challenge, as I think Rebecca Dresser understands and Dena Davis does not, is to balance the perspectives of Jane-Doe-ten-years-ago and Jane-Doe-today. How should we do this and who should be the arbiter? The way to proceed, I believe, is for former Jane Doe to identify the goal of care for her future self. Plausible goals are the prolongation of life, maximization of quality of life, or promotion of comfort. Death, parenthetically, is not a goal; it is a means to an end. Only rarely is it the only or the best means to achieving a legitimate goal. Most people, I suspect, would choose comfort as the goal in advanced dementia and maximizing quality of life as the goal in moderate dementia. All the physician needs to do is to translate that goal into practice. For an acute medical problem such as pneumonia, for example, comfort means using Tylenol to keep fever at bay and oxygen to ameliorate shortness of breath. Maximizing quality of life may mean using oral antibiotics—but not hospitalization in an intensive care unit with a ventilator for breathing.

We will never entirely be able to prevent people from committing suicide upon learning they are at substantial risk, if they live long enough, of developing clinical Alzheimer’s. After all, people can kill themselves when diagnosed with a disease such as metastatic cancer, even before they develop intolerable symptoms, though few do so. They could kill themselves prophylactically at age 65 or 70 to assure they will never get any awful disease, though most people do not choose this route.  Our responsibility, however, as clinicians, ethicists, and lawyers is to try to make sure that every individual can live as good a life as possible, whatever cards she has been dealt. That’s what a good society does.

A POLST Post

For 40 years, doctors, philosophers, and patients have been trying to figure out how to make sure that people can have a say in decisions about their medical care near the end of life, even if they are no longer able to speak for themselves. We’re still trying.

First we had the “living will.” A conventional will allows a person to specify what should happen to his property after he dies; why couldn’t a similar document indicate what should happen to his person while he was still alive but unable to articulate his treatment preferences? The problem with living wills, which were typically of the form “if I am terminally ill and there is no reasonable chance of my getting better, I do not want extraordinary measures to prolong my life,” is that they were too vague. Just exactly when is a person terminally ill? In the last days of life? Months? What about someone with a progressive, ultimately fatal disease such as Alzheimer’s, which can last years? At what point does someone with dementia become “terminally ill?” And what are extraordinary measures? A breathing tube? Attempted cardiopulmonary resuscitation? Hospitalization?

Because living wills were so imprecise, two physician-ethicists came up with the idea of an “instructional directive,” a document that spells out what the doctor should do in each of various situations. Called “The Medical Directive,” it took the form of a complicated grid and asked patients, when they were well enough to make medical decisions for themselves, what approach to treatment they would want if they were irreversibly comatose, if they were comatose with a very small chance of regaining some degree of function, if they had advanced cognitive impairment and terminal illness, or if they had advanced cognitive impairment but no (other) terminal illness. Prospective patients were offered 12 possible procedures or treatments, ranging from CPR to dialysis to antibiotics. For each of the 4 scenarios, they were asked to indicate if they would want (perhaps a better word is “accept”) the procedure if recommended by a doctor, if they would refuse the procedure, if they would want a limited trial, or if they were unsure. This document seemed like the doctor’s dream: it would tell the physician exactly what to do when faced with a very sick but mentally incapacitated patient. Considering a breathing tube? Chemotherapy? Blood tests? Just scan the Medical Directive and see if it’s on the approved list. But there were problems. It was a complicated document to fill out. It was not clear if patients understood what they were saying yes or no to when they filled it out. And it only included 4 clinical scenarios. What about the 85-year-old with heart disease, kidney failure, diabetes, and emphysema who was hospitalized with a severe pneumonia? That patient doesn’t show up in any of the 4 scenarios—but might not want some or all the proposed interventions.

Some people despaired of finding a way to record in advance what a patient would or would not want. Instead of telling the doctor what to do, they proposed telling the doctor whom to speak with to make medical decisions. With this approach, all a patient has to do is designate who that person should be—variously called a health care proxy or a durable power of attorney for health care or a surrogate decision-maker. But this is problematic, too. Often prospective patients choose a health care proxy without talking to that person about their preferences. Sometimes the proxy doesn’t even know he is the proxy.

In recent years, many physicians and ethicists have advocated “combination directives,” which include short versions of all the above documents: they name a surrogate, they summarize the patient’s general preferences, and they list which of a handful of procedures would be acceptable in each of several clinical situations. But even these combination directives were not a great solution, in part because only a few people filled them out, and in part because physicians had difficulty figuring out how to translate them into practice.

To solve the translation problem, physicians came up with a new approach: instead of relying on an advance directive, create a doctor’s order, binding on paramedics, emergency room physicians, nursing home staff, and any other medical personnel who came into contact with the patient. The earliest form of such an order was the “out of hospital DNR” order, a form signed by the patient and by his attending physician that stated that cardiopulmonary resuscitation should not be attempted. A more nuanced and complex approach is the Physician Orders for Life-Sustaining Treatment (POLST), piloted in Oregon. The POLST is supposed to build on a discussion with the patient about his goals of care. Based on that discussion, the patient and physician fill out a document that indicates which of various treatments (CPR, a ventilator for breathing, artificial nutrition) may be used. It’s similar to the Medical Directive, but does not ask the patient to imagine being in any of several conditions (the newer versions of the Medical Directive, incidentally, are expanded to include 6 situations), and it is a doctor’s order, not a statement of preferences.

POLST forms have caught on in many states. According to the National POLST organization, 14 of the 50 states have endorsed POLST (though only 2 of these have ‘mature’ programs), 27 are developing POLST programs, and 10 (including Washington, DC) have no programs. In Massachusetts, it’s the Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) and in West Virginia, it’s Physician Orders for Scope of Treatment (POST). But the big question is whether these forms are successful in assuring that the patient’s voice is heard. A new study in the Journal of the American Geriatrics Society—the largest analysis of the outcomes of the POLST program to date—says they are. 

The authors examined all 58,000 adult deaths in the state of Oregon in 2010-2011 and found that 17,902 had submitted a POLST form to the “POLST Registry.” When they studied the preferences those patients expressed on the POLST, they found that 66% wanted a focus exclusively on comfort, 6.4% wanted maximal medical treatment, and 26.7% wanted something in between. They also found that patients who had completed a POLST form were more likely than those who had not be white, very elderly, and female, to live in an urban area, to have more than a high school education, and to have a diagnosis of cancer. When they looked at subpopulations with particular diagnoses, they found that 41% of people dying of cancer had filled out a POLST compared to 35% of people with Alzheimer’s disease and only 25% of people with heart disease.

To answer the question of the impact of POLST completion on the care the patients received, the authors looked at whether the patient died in the hospital—not necessarily an accurate marker of whether the medical order was carried out. It turns out that 1/3 of people who did not complete a POLST died in the hospital, compared to only 6% of people who had. Looked at differently, 6.4% of patients who specified a comfort-only approach (and specifically said they would not want to be hospitalized unless essential for comfort) on the POLST were in fact hospitalized, compared to 44.2% of those whose POLST forms said they were to have no restrictions on treatment and 34.2% of people with no POLST.

There’s much we still don’t know about the POLST. We don’t know how often patients got interventions they had specifically stated they didn’t want. We don’t know how often physicians recommended treatments or diagnostic tests and then proceeded with them—or changed course—because of what was specified on the POLST. Most crucially, we don’t know whether patients in fact discussed their general state of health, their prognosis, and their goals of care with their physician before completing a POLST form. We don’t know whether the 71% of patients who died without a POLST on record had been offered such a form and declined to fill it out or whether the subject hadn’t been broached with them.

What we do know from many studies is that when patients discuss their condition and their wishes with their family members and their doctors, they have a much better chance of having a comfortable final phase of life than if they do not. Translating those wishes into an advance directive or a medical order may turn out to be less important than having the discussion in the first place.

Planning Ahead

Maybe nobody paid much attention to National Healthcare Decisions Day because it fell on the first day of Passover or because it came right after the anniversary of the Boston Marathon bombing. Or maybe Americans are suffering from holiday overload. But April 16 was officially the day Americans were supposed to remember to complete an advance directive—a document that states who is supposed to make medical decisions in the event of our incapacity or what kinds of choices we want made—and the major media didn’t breathe a word about it. Are advance directives passé? Are they still toxic after Sarah Palin associated any attempt to plan for future medical care with a “death panel?” Or are people blasé about them—either because they already have one or because they don’t do any good?

A new study published this month in the Journal of the American Geriatrics Society looks at one aspect of the question: how many people have an advance directive and how has this changed over the past 10 years? Drawing on data from the Health and Retirement Study, a national sample of people over age 60, and using interviews conducted with next-of-kin after death, the authors conclude that the proportion of people who died with an advance directive in place increased markedly: from 47% in 2000 to 72% in 2010. And these numbers are dramatically higher than the earliest reports. Studies done just after the Patient Self-Determination Act first went into effect in 1991—a law that requires all health care institutions that receive federal money to ask patients if they have an advance directive and to offer them one if they don’t—found completion rates for the population as a whole barely made it to the double digits. But does this improvement matter?

The new study has some major limitations—it only includes people who died and it relies on the testimony of a relative or friend to determine if the person had drawn up a living will or designated a health care proxy. Moreover, it was confined to people over age 60. A Pew Research poll done a few years ago found that only 29% of the general public had a living will (up from 12% in 1990). But more important than how many people have advance directives is what kind of advance directive they have and whether these documents change what happens to people when they get sick and cannot speak for themselves about the kind of medical treatment they want.

As far as the kind of document goes, we know from the current study that 45% of people who died had a living will, some sort of statement about the type of treatment they would want. These range from very general assertions such as “no heroic treatment” to specific statements about ventilators or attempted cardiopulmonary resuscitation, but typically apply only if “death is imminent.” A total of 57% had a durable power of attorney for health care, or health care proxy—they had designated someone, usually an adult child or spouse, to make decisions on their behalf if necessary. And 38% of those older individuals who died had had both a living will and a health care proxy. We don’t know anything about what fraction of people had done any other kind of advance care planning: we don’t know, for example, if they completed a POLST form (a physician order for life-sustaining treatment, which is a medical order indicating which of various specific possible treatments such as CPR, a ventilator, or dialysis, a prospective patient would want. We don’t know if they indicated their goal of treatment, a decision that is supposed to precede completion of a POLST form, and which gives physicians guidelines to use in deciding about any given intervention: is the technology that is under consideration likely to be effective in prolonging life? In keeping the person independent? In promoting comfort? We don’t know if the 6005 people who form the basis of the new study had ever spoken to their families or their physicians about what mattered to them or what approach to treatment they would want if they became very ill.

We do know that whether or not someone had an advance directive failed to affect their chance of being hospitalized in the last 2 years of life and had no effect on whether they died in the hospital. That is, we know that the risk of hospitalization in the last 2 years of life went up considerably between 2000 and 2010 (from 47% to 72%), but having an advance directive did not affect the rate one way or another. We also know that the odds of dying in the hospital as opposed to a nursing home or at home fell (from 45% to 35%), but that fall was also unrelated to advance directive status.

So do advance directives achieve anything? The authors of the current study showed in an earlier study that having an advance directive appears to be associated with a greater likelihood that one’s wishes for end-of-life care are followed. This conclusion was based on the reports of the next-of-kin after the death of their relatives and it was never clear on what basis those next-of-kin knew what kind of treatment the person who died had actually wanted. There is very little evidence that advance directives trigger or reflect conversations about the goals of care. There is even less evidence that they influence care before the last few days or weeks of life. Maybe the national media ignored National Healthcare Decisions Day because it was overshadowed by other more exciting events. Or maybe they ignored it because it continues to focus on a form, on completing a legal document, rather than on addressing head on what is most important to us in the last year or two or five of life, on the decisions that will matter most in life’s last stage, however long that lasts.

Getting Autonomy Right

My father will be 90 next month. He lives in a nursing home because he needs help with all the most basic tasks—eating, dressing, bathing, walking. But my father also has dementia, which has been getting worse, as dementia generally does. As a geriatrician, I know that one of the few ways to make a person with dementia better is to take away any medications that might be contributing to the cognitive impairment. So when I realized my father was still taking a small dose of the tranquilizer valium (diazepam) every day, I suggested it be stopped. I was stunned when my father’s doctor called me to say he felt stopping the valium posed an ethical dilemma.

An ethical dilemma? Valium is on the most widely recognized list of medications that are generally inappropriate for use in older people. The American Geriatrics Society recommends against prescribing valium in the elderly because the drug accumulates in the body, takes days to weeks to be eliminated  from the system, and is notorious for causing confusion and lethargy, especially in people with dementia. Now guidelines and recommendations are not absolute. Valium has not been taken off the market by the FDA. And my father is only on a low dose of the medicine. For years, he was on a far higher dose because it helped control his debilitating panic attacks. When I was growing up, he used to have panic attacks every few weeks, even with high dose valium, but the attacks were far worse without the valium. Multiple efforts to find another drug that was equally beneficial without potential side effects had failed, so my father stayed on valium. Over the last few years, his doctors have tapered the dose, but they never stopped the drug entirely. Since entering the nursing home 2.5 years ago, he has remained on valium even though he hasn’t had a single panic attack. And now he is sleepy much of the time—he can’t keep his eyes open when you try to talk to him—and is more confused than ever. 

Why, then, was stopping valium ethically problematic? It might seem, by contrast, that continuing a drug that every geriatric authority deems pernicious is what is ethically problematic. But it turns out that 1.5 years ago, when my father’s mental faculties were better than they are now, though hardly normal, he told his physician that he wanted to stay on valium. So in the view of that same physician, stopping the medication now would be a violation of the all-important ethical principle of respecting autonomy.

Now I’m all for respecting a patient’s right to make medical decisions for himself. But making a medical decision assumes the patient has the capacity to weigh the risks and benefits of the treatment. And I am quite confident that my father, who is unaware that he even has cognitive impairment, cannot understand that valium could be worsening his cognitive impairment. I am sure that my father, who does not remember what he had for breakfast or even if he had breakfast, has no recollection of when he last had a panic attack. He is simply unable to evaluate the situation, and to rely on the opinion he had 1.5 years ago (assuming he understood the issues then, which is another matter), is absurd. “Respect for autonomy” is not equivalent to “the customer is always right.” It is not respectful of a person’s right to determine what happens to his body for a physician to mindlessly follow the dictates of the patient. When a cancer patient declines potentially life-prolonging treatment, should his oncologist accede to his wishes without first being sure the patient understood both what would happen if he got the treatment and what would happen if he didn’t?

There’s another problem with the assertion that my father should continue to get valium today just because he previously requested the drug. Leave aside for the moment the issue of whether he has the capacity to make any medical decisions. Even a competent patient cannot demand non-beneficial treatment. This is a point that both patients and physicians seem to have trouble accepting. Medicine is a profession and the essence of a profession is that its members have a particular expertise. Physicians are uniquely positioned to make medical diagnoses and to offer treatment based on their clinical assessment and medical judgment. Patients can decline the treatment if there are several reasonable options, and they can select which of the various possibilities makes most sense to them, given their personal views of the side effects they are keenest to avoid and the benefits they are most eager to experience. But patients cannot demand antibiotics for treatment of a viral infection or laetrile for treatment of cancer. Sometimes the treatment the patient wants is possibly effective, though only very, very rarely, and the issue becomes whether patients have a right to insist on treatments that are exceedingly unlikely to work—especially if they are fraught with danger and very expensive. But in my father’s case, it just doesn’t make sense to assert that he could demand valium if his physician believes it is not medically indicated (and his doctor agrees it is not a good drug for him), even if he had the cognitive capacity to discuss medical issues.

But perhaps even more troubling to me than the failure to recognize that the right to make medical decisions presupposes competency, and even more disturbing than the confusion about whether patients can demand non-beneficial treatment, is the profound misunderstanding about the nature of advance care planning. Now advance care planning is something I think about a great deal. It’s a topic I write about on this blog and elsewhere. Advance care planning is a process in which a person who is of sound mind indicates what approach to medical care he would want if he became ill and was unable to make decisions for himself. If advance care planning is to work, it’s crucial that when a patient articulates his wishes about future care at one point in time, and then finds himself in exactly the situation he envisioned at a later time, his physicians abide by those wishes. What’s not right—and this is what my father’s doctor worried about—would be to cavalierly ignore or even reverse a thoughtful, carefully made decision once the patient loses the capacity to make decisions. It would make a mockery of advance care planning if, for example, a patient while clear-headed said he would under no circumstances want CPR attempted, and as soon as he developed dementia, his health care proxy or physician reversed the patient’s “DNR” order. 

So at issue is what exactly my father meant when he said, 1.5 years ago, that he wanted to continue taking valium. Did he mean that he wanted to take valium for the sake of taking valium? Did he meant that if his Parkinson’s disease became so severe that he could no longer swallow, he would want a feeding tube inserted just so he could continue to get valium? Did he mean that if a better drug came along, one that was more effective and with no side effects at all, he would nonetheless prefer to keep his valium? Or was he really saying that he wanted to continue taking valium as long as it effectively controlled his panic attacks, and he was willing to put up with some minor side effects in return for this benefit? If so, then it follows that if the valium is no longer needed for control of panic attacks, there is no reason to keep on taking it.

The story has a happy ending in that my father’s physician acknowledged my reformulation of the earlier statement “I want to keep taking valium” was plausible. The doctor will discontinue the valium on a trial basis. Now it’s conceivable that the panic attacks will return. Perhaps the reason my father hasn’t had any such episodes in the last 3 years is that the valium has been working wonders—even though for the previous 30 years, valium never ablated the panic attacks, it merely attenuated them. In that case, the doctor will again prescribe valium for my father. It’s also quite possible that discontinuing valium will have no discernible effect—either on panic attacks or on my father’s cognition. He will remain just as befuddled and sleepy as he is now. But at least we will not have uncritically adhered to something my father once said, in a misguided attempt to respect his autonomy.

While this particular “ethical dilemma” looks as though it will be resolved, I worry about all the other physicians who fail to appreciate the importance of ascertaining the patient’s understanding of the issues before blithely following his wishes; I worry about all the patients and physicians who do not distinguish between refusing unwanted medical treatment (a legitimate patient right) and demanding non-beneficial treatment (not a patient right); and I worry about how advance care planning is implemented. The latest variant of advance care planning is the POLST form (physician orders for life-sustaining treatment) and related efforts with similar names (in Massachusetts, it is MOLST), which is actually a medical order. In this approach, patients decide together with a clinician what specific treatments they would accept and which they would not (this can include CPR, ventilators, dialysis, feeding tubes, intravenous fluids or other interventions) and sign an order to this effect, an order that is supposed to be binding on all medical personnel: on EMTs in ambulances, nurses in nursing homes, and physicians in emergency rooms and hospitals. It’s a valiant attempt to make sure that patient autonomy is respected. But whether it will achieve this laudable aim depends on whether patients have the capacity to make decisions when they sign the form and whether they truly understand the underlying issues. Today, patient’s wishes are often not respected. Tomorrow, we may be imputing “wishes” to patients that they never had.

Everyday Ethics

 Nearly 25 years ago, gerontologists wrote about what they called “everyday ethics” in the lives of older people. They wanted to move the focus from the dramatic, life-or-death decisions that were the bread and butter of medical ethics, to the more mundane, but far more common concerns affecting elderly individual. These kinds of issues ranged from seemingly trivial concerns that nonetheless affected quality of life, such as the freedom of nursing home residents to decide when to get up or where to sit at breakfast, to medically consequential decisions such as whether to be treated at home or in the hospital. In some cases, older people had strong opinions about what they wanted, but needed help implementing their choices—in ethical lingo, they were “decision-competent,” but did not have “executional autonomy.” In other cases, older people did not have the cognitive capacity to make choices and needed a surrogate to decide on their behalf. 

Everyday ethics never caught the imagination of physicians or of the general public. It just wasn’t as exciting as the momentous decisions about who would get an organ transplant or whether someone could be taken off a ventilator. But the commonplace decisions that have to made each day for frail older individuals collectively have far greater import than the much rarer life-or-death decision. Someone has to decide whether an 85-year-old woman with dementia and difficulty caring for herself will stay in the community or enter a nursing home. Someone has to decide whether a 90-year-old with pneumonia will be treated in her home or in an acute hospital. Someone has to decide whether the 79 year-old with very advanced dementia should enroll in hospice. But the focus of the medical literature, of empirical studies of what actually happens in daily life and theoretical essays about who should make decisions and on what basis, tends to be on the use or withdrawal of technology, of the major symbols of medical treatment. So a new study that purports to look at the role of surrogate decision-makers outside the intensive care unit setting is a welcome reminder that what matters to older people—and what accounts for most of their healthcare utilization—is not just procedures and surgery and machines.

This new study makes the important but not surprising observation that surrogate decision-makers are critically important to older patients. They report that within 48 hours of admission to a hospital, 47% of older adults require that a medical decision be made in which a surrogate participates. In 23% of cases, these decisions are made exclusively by the surrogate. Unfortunately, this study is confined to the acute hospital setting. It still deals with big ticket items—in 57% of cases, the decision in question related to life-sustaining care, principally whether to attempt CPR in the event of a cardiac arrest, and in 49% of cases, the decision related to an operation or procedure. Not only was the study restricted to the hospital, but it included decisions made in the ICU, even though the authors specifically give as the impetus for their work the need to extend the discussion to settings outside the ICU. But at least it is a start. We need to look at the everyday decisions made by surrogates for their aged, frail, or demented family members and examine how they make these decisions, what help they need, and how they could make better decisions, ideally reflecting the values and needs of those they love.

After Life

The saga of the pregnant brain dead woman in Texas, about which I blogged a couple of weeks ago, is now mercifully over. A Texas judge ruled that the hospital was required to pronounce the woman dead and turn the body over to her family for burial. That was done and all medical equipment has been removed: ventilators, catheters, feeding tubes and whatever else was being used to attempt to sustain the fetus. Funeral preparations are underway. Unfortunately, the newspaper accounts of the sad story of a woman who died too young remain hopelessly confused. 

Journalists still report that Marlise Munoz had been on “life support.” She had been attached to a machine that pumped oxygen into her blood and to another one that pumped in nutrients. But she had not been on life support. She was, tragically, dead and no amount of sophisticated technology can “keep someone alive” who is already dead. The journalists quote the woman’s husband as saying his wife had told him she “would not want to be kept alive under such circumstances.” I don’t know what Mr. Munoz, who is an emergency medical technician, actually told reporters. His wife might have said she wouldn’t want machines to sustain her life if she were in a vegetative state. She might have said that if she died, she would not want her organs used or that she would want to be buried promptly. But “keeping her alive” when she was dead was not an option.

Turning to the fetus—the only participant in this drama who was arguably being “kept alive” by machines—the newspapers quote one lawyer as saying “there is an infant, and a dead person serving as a dysfunctional incubator.” I don’t know what the lawyer actually said or what her role was--and she is right that the dead body of Mrs. Munoz was being used as an incubator--but she is not right that “there is an infant.” There was a fetus (“the young of a mammal in the womb”), not an infant (a baby in its first year of life after birth). 

All this confusion raises a novel and important issue for older people who are interested in advance care planning—what are the rights of the dead? Most of advance care planning is about living—how a person wishes to be cared for as the end of life approaches. But people also have the option to specify how they want their body to be handled after death occurs. A dead body is not a person; it does not have rights in the way that (living) people do. However, respect for autonomy means a living person has the right to determine what will be done with his or her dead body after death. 

So here is what you can say about care-after-death. You can say whether you want to donate your organs after death. Transplanted kidneys, livers, corneas, and other body parts can prolong life or improve the quality of life and there are not nearly as many organs available for transplant as there are people who could benefit from them. You can indicate whether you want an autopsy. Such post-mortem medical examinations can provide information about the cause of death that may be valuable to family members who want to know their risks and are often useful to physicians to improve their skills. And you can say whether your dead body should be disposed of by burial, cremation, or donation to a medical school. Cadavers continue to be important to first year medical students who are learning anatomy.

There are of course limits to what a person can demand about how his or her dead body will be handled. If foul play is suspected, the state can demand an autopsy without requiring consent. If the request for care after death poses a risk to public health—through improperly disposing of the corpse, for example, the government can intervene. But in general, you can decide. Along with designating a health care proxy (someone to make decisions on your behalf about medical care if you are unable to do so), and along with writing out a living will (stating what you would or would not want in various circumstances), you can consider saying what you want after life.

Unconscious Biases

“Ariel Sharon dies after 8 years in a coma,” proclaimed one headline. “Brain dead pregnant woman kept alive” said another. Neither headline can possibly be accurate. The former prime minister of Israel was not in a coma. The pregnant woman in Texas is either not brain dead or, if she is dead, no medical technology can “keep her alive.” From simple fainting to death, with coma, vegetative state, minimally conscious state, and persistent vegetative state in between, unconsciousness is a messy business. But it’s time we—the general public, the media, lawyers—got it straight. The distinctions matter.

Once upon a time, if your heart stopped beating and you weren’t breathing, you were dead. Anyone could identify a dead body. But  then modern medical science made a few radical discoveries. Medicine showed that some people who looked like they were dead were actually in a kind of state of suspended animation. It turned out that if your heart and your breathing stopped because of profound cold (hypothermia) or certain drugs, you had a decent chance of waking up if you were re-warmed or if the drugs were removed from your system. Medical science led to new technologies such as ventilators that take over for the lungs and pacemakers that stimulate the heart to pump. Dependence on the new technologies was not the same as death. All these developments challenged the traditional notion of death. And then in 1968, a new concept of brain death was born. Articulated by a Harvard Ad Hoc committee, the new way of looking at death emergend from the recognition that the brain is our central processing unit, the organ that organizes and integrates all the functions necessary for human life.

It’s perhaps unfortunate that brain death was originally defined by a committee. It’s regrettable that it was an ad hoc committee and one with the name of a single university attached. But the basic view of this group, that death exists when the entire brain irreversibly ceases to function, has become established as the legally recognized definition of death in all 50 states and the District of Columbia. The American Academy of Neurology has issued guidelines detailing how, in practice, brain death should be determined. Any neurologist, neurosurgeon, or intensive care unit specialist should be able to make the assessment. And it doesn’t require any fancy technology: diagnosing death is basically a clinical determination, though in hospitals today, physicians often use tests such as EEGs or MRIs as “confirmatory evidence.” A person is dead if his brain is dead.

Since the introduction of the modern concept of brain death less than 50 years ago, physicians have learned a great deal about the various forms of unconsciousness. There’s fainting or “passing out,” characterized by transient loss of blood flow to the brain, a reversible condition that is familiar to most people and which can be brought about by marked anxiety or by extremely low blood pressure. Then there’s coma, in which a person is in a deeper state of unconsciousness and doesn’t respond at all to his environment. The eyes are closed. Coma results from conditions such as trauma or stroke and typically lasts no more than a few weeks. People in coma either wake up or move into a vegetative state. 

A vegetative state is much like coma except the eyes are open and it can last much longer. The person looks as though he is awake, but he’s not. His eyes wander randomly; he does not respond to words or to physical stimuli. Someone in a vegetative state often has a working brainstem, the part of the brain responsible for automatic functions such as breathing. But he has no cognitive function—no awareness, no ability to think or hear or speak. 

From a vegetative state, a person can progress to either a minimally conscious state or a persistent vegetative state. The minimally conscious state is a recently described state in which a person has a very limited amount of higher level brain function: sophisticated tests such as a functional MRI show some kind of neurological response when the person is shown familiar photographs or words. The persistent vegetative state—the other possible next step after a vegetative state—is basically the same as a vegetative state but one that has lasted a long time (months) and is now irreversible.

It should be evident from even this brief description of the varieties of unconsciousness that Ariel Sharon was not in a coma for eight years. Exactly what state he was in is not entirely clear from the public record, but it was most likely PVS. He was sustained by artificial nutrition and hydration. Acute illnesses such as infection were treated with antibiotics. Apparently his death was precipitated by kidney failure: his kidneys shut down and the decision was made not to start dialysis but rather to allow him to die. Whether Marisa Munoz is brain dead or is in a vegetative state is also not clear from the public record. If she’s in a vegetative state then, according to Texas law, medical interventions to sustain her and allow her pregnancy to continue are required, even if she would not have wanted such interventions. If she is brain dead, then she is dead, period. There is no such thing as “life sustaining treatment” for a dead person. We cannot revive the dead. And the state cannot decide to use a dead body as an incubator for a fetus, any more than it can decide to remove organs from a dead body to save the lives of people awaiting transplants.

These in-between states are hard to accept because the people languishing in such a condition—and there are somewhere between 15,000 and 40,000 people in the US in a PVS—do not look dead. They are not cold. Their hearts are beating. Their eyes are open. Common sense tells us they must be alive. But science is often at odds with common sense. Common sense rejected the notion that micro-organisms (tiny single celled organisms that are invisible to the naked eyes) could cause disease. Common sense dismissed the connection between cigarettes and cancer. Common sense holds that pneumonia results from going out into the cold without a hat and that cancer results from repressing emotions. The essence of the science is that it reveals truths that are not self-evident.

Difficult as the distinctions among the different states of unconsciousness may be to accept—and it hasn’t helped that the terminology has evolved over time—we have to get them right. Only then will we be able to spell out in an advance directive how we wish to be treated if we are ever in one of these conditions or to tell our families and physicians. Only then will we be able to make a decision based on our moral understanding, not on magical thinking that allows us to believe that an irreversible condition can be “cured.” People may disagree about the morally correct way to treat someone who is in limbo between life and death. The Catholic Church holds that reverence for the sanctity of life requires that people in PVS be treated with artificial nutrition and hydration. 

I think that the best way to show respect for human life is not to confuse it with a mere collection of cells, cells that do not and will never be able to function as a thinking, feeling human being. Accordingly, I think that it is wrong to inflict invasive medical treatment on someone in a persistent vegetative state. I have written a living will in the form of a letter to my husband, my formally designated health care proxy, telling him what approach to medical care I would want if I lost the functions that make me who I am. I encourage everyone to learn about unconsciousness states, to think about what their goals would be for themselves if they developed such a condition, and to share their views with the person who would make decisions for them if they lost the ability to make their own decisions. 

A Rose by Any Other Name

While casting about for something to discuss in my blog, I stumbled on a short article that advocates renaming the “death panel” the “good planning panel.” The authors point out that family meetings involving physicians, patients, and their loved ones talking about future medical care are generally well-received. Moreover, this kind of advance care planning prevents depression and anxiety in both patients and their families, and when patients have these conversations, they typically end up undergoing fewer invasive procedures in their final weeks of life, procedures that most patients say they don’t want. Allowing Medicare reimbursement for such meetings would be a very positive step in the direction of improving the care for patients with advanced illness. Whether calling it a “good planning panel” would transform the way people think about these kinds of discussions, in light of the lingering association with the “death panels” born of the right wing media’s imagination, is another matter. Moreover, “panel”  is a poor choice of word, evoking the image of a jury delivering a verdict. But it led me to think about the power of words and the role of euphemisms in medicine.

When the Center for the Advancement of Palliative Care commissioned a market survey a couple of years ago, they learned that most people either had no idea what the term “palliative care” meant or assumed, incorrectly, that it was the same as “hospice,” which they in turn associated with imminent death. (Palliative care is an approach to care for anyone with advanced illness: it neither assumes the patient is close to death nor does it in any way limit treatment, but rather provides treatment focused on improving quality of life; palliative care can be given alongside of life-prolonging medical therapy). When the public were asked if they were interested in having “an additional layer of support” from their health care team, as palliative care was defined, they were uniformly enthusiastic. Similarly, many physicians were reluctant to broach the topic of “palliative care” with their patients because they thought it would be too frightening; they preferred to offer “supportive care.” So is “supportive care” a more useful name because patients understand that term correctly, or is it a misleading euphemism, designed to make patients think it is something that it isn’t? 

And what about the evolution of the “DNR” (do-not-resuscitate) order? Some years back, the phrase “DNAR” (do not attempt resuscitation) was introduced. Since I’m someone who likes to tell things as they are, I favored that substitution. After all, the implication of DNR seemed to be that if only the physician did perform CPR, the patient would be perfectly fine. Usually, the reality is quite different: no matter whether CPR is performed or not, the patient with advanced illness whose heart stops beating will almost certainly die. But more recently still, some physicians have replaced “DNAR” with “AND,” which stands for “Allow Natural Death.” Instead of focusing on whether a particular technological procedure (CPR) will or will not be tried, this formulation seeks to tell patients that what is at stake is having a “natural” experience. Natural, like organic, conjures up something good, unlike, presumably, something that is unnatural or inorganic. “Allow Natural Death” also adds the word “allow” to imply that if you don’t opt for this course, that is if you choose CPR, you will be obstructing or preventing something natural from occurring. Never mind that this is precisely the point—what is “natural” in this instance is to die, and CPR is intended to prevent that most unfortunate reality, just as taking insulin to treat diabetes or having bypass surgery to alleviate the symptoms of heart disease are very unnatural but often extremely desirable medical interventions.

So are these verbal permutations a good thing or they a kind of sleight-of-mouth, designed to deceive and manipulate? What if the original term—DNR or palliative care, for example—evokes such disgust that patients immediately reject it, whereas the new term—AND or supportive care—has far more positive resonance? I used to buy the bioethics argument that truth-telling is one of the cardinal virtues and that it’s a key ingredient of moral medical practice; that failing to tell the patient his diagnosis or his prognosis engenders fear and distrust, not to mention that it is profoundly disrespectful of a person’s autonomy, his individuality, his “right” to know about his own body and his own future. But I’ve been reading some behavioral psychology lately, and I’m not so sure that people make decisions based on calmly and systematically weighing the pros and cons of the various alternatives; they seem by contrast to rely heavily on their intuitions. What this perspective suggests is that there is no truly neutral way to present information, that words are powerful (though sometimes images are even more powerful), and that the best we can do is to avoid deliberately misleading patients. 

So both “death panels” and “good planning panels” are out because they are not panels and they are not about death; “advance care planning discussions” are more accurate. “DNR” and “AND” are out because they mislead; DNAR is more objectively correct, though it may well have positive associations for some patients and negative associations for others. And I’ll stick with calling what I do providing “palliative care” rather than “supportive care,” though I’m quite willing to define palliative care—if I’m asked—as providing support to patients and families through symptom management, psychosocial support, and advance care planning.