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.