Good for Nothing?

               For over thirty years, we’ve been arguing about when medical care is “futile.” The debate began in the 1980s, when the most common question faced by hospital ethics committee stopped being, “do doctors have to do this procedure, even if patients or their families don’t want it?” to “do doctors have to do this procedure if patients or their families demand it, even if the doctors don’t want to?” One case that attracted a great deal of attention was that of Helga Wanglie, a woman in her late eighties who was in a vegetative state after hip surgery and whose physicians wanted a “DNR” order. Helga’s husband, speaking on her behalf, disagreed. Ultimately, the case ended up in the Minnesota courts and was settled based on a technicality—the hospital sued on the grounds that the husband wasn’t an acceptable surrogate, but the court found that he was. The issue of what qualified as “futile” treatment was largely skirted.

         The bioethics community then struggled to define futility, with Schneiderman, Jecker, and Johnson proposing what appeared to be a quantitative definition: if the treatment in question has failed in the last 100 cases, then it’s futile. There were several problems with this approach. First, it sounds nice and scientific, but nobody was collecting data on what worked in whom. Even if we had information about 100 people, they were rarely identical in what might be crucial ways—is an 85-year-old with advanced dementia, diabetes, and heart disease who has a cardiac arrest equivalent to a 75-year-old with cancer? Secondly, what exactly was meant by a treatment “failing?” Helga Wanglie’s doctors said a ventilator was “failed” treatment because it could not restore the patient to her condition before she was hospitalized—it wasn’t going to allow her to walk out of the hospital and go home. Her husband said a ventilator was “successful” treatment because it sustained Helga’s life. The answer to whether a treatment would be futile turned out to be, “it depends.” It depends on what the treatment was supposed to accomplish. The net effect was that in most of the country, the word “futility” was abandoned in discussing treatment options.

         The exception was Texas, which passed an “Advance Directives Act” in 1999, widely known as the Texas “Futile Care Law.” It spells out a process by which physicians can assert that a treatment is futile and need not be given, as well as a process for adjudicating any disputes between physicians, patients, and families. Ultimately, the physicians have the final say.

         Despite the consensus in the bioethics community and the near consensus among state legislatures that discussing futility was unhelpful, physicians have continued to believe that various treatments should not be provided in certain circumstances because it is morally wrong. To address the persistent discomfort physicians and nurses have felt administering what they regard as “futile” care, the American Thoracic Society recently came out with a position paper called “Responding to Requests for Potentially Inappropriate Treatment inIntensive Care Units.” This policy statement was endorsed by four other professional organizations. Another guideline, this one published by the Society for Critical Care Medicine, addressed what it called “non-beneficial” treatment. The originators of the quantitative futility concept, Schneiderman, Jecker, and Jonsen, continue to believe that “futility” is the best way to describe the class of treatments under consideration.

         So, which is it: Futile treatment? Potentially inappropriate treatment? Non-beneficial treatment? None of the above?

         The issue, it seems to me, is whether the problem is fundamentally a technical one or an ethical one. “Futility” advocates want to define the problem (perhaps surprisingly, since its principal supporters are ethicists) as a technical one. The proponents of “potentially inappropriate care” seem to acknowledge that the issue is ethical (again surprisingly, since its main advocates are physicians). It would be lovely to make the dilemma vanish with a technical solution! If only we could state precisely when CPR or a ventilator or dialysis or chemotherapy cannot work to achieve whatever specific goal it is supposed to accomplish. Then we wouldn’t have to ask whether it’s the right approach. Surely, we can all agree that if something cannot work, like antibiotics for a viral infection or apricot pits for cancer, providing such a “remedy” is inconsistent with professional standards. 

           Unfortunately, such cases of what has been called “physiologic futility” are relatively rare. More common is the situation where an intervention is deemed by medical professionals to be inappropriate because, in their estimation, the burdens outweigh the benefits. This conclusion rests on an understanding of the clinical situation, but also on a moral judgment.

         The desire to convert what is quintessentially an ethical dilemma to a technical one is understandable. It relies in large measure on the recognition that many medical decisions do have a technical and an ethical component, and that often, it is up to the patient (or the patient’s surrogate) to address the ethical piece. But that awareness does not preclude professional ethical standards playing a role as well. The debate about physician assisted suicide, while complicated because of varying legal standards, is to a large extent about whether physicians regard ending the life of a suffering, terminally ill patient as consistent with their ethical norms. The widespread recognition of the responsibility of physicians to care for patients who are criminals or other individuals they may find personally objectionable is based on the ethical code of conduct of the medical profession.

         Recognizing the patient’s values and shaping medical care to be consistent with those values is desirable—when the patient’s ethics and those of the medical profession do not irreconcilably conflict. It’s important to point out that I’m not just talking about the idiosyncratic views of a given physician—the personal ethical values that have been put forward as a justification for failing to provide contraception. I’m talking about an ethical standard of care set by the profession as a whole. The American Thoracic Society statement on “potentially inappropriate care,” while not perfect, is an effort to define what the profession regards as appropriate—acknowledging, through its caveat about “potentially inappropriate” care, that there could occasionally be circumstances where the profession’s norm is not applicable.

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.

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.