Advance Directives: Time To Move On

There is always an easy solution to every human problemneat, plausible, and wrong. H.L. Mencken (1) For the past 2 decades, people have debated the role of advance directives in decision making and improving end-of-life care in the United States (2-4). From a normative standpoint, advance directives are an important legal tool for persons to state preferences and name a surrogate decision maker in case they became mentally incapacitated later in life. However, empirical research findings raise questions about the role of written advance directives because of doubts about the stability of patient preferences (5), how living wills are used in decision making (6), and the role of living wills in reducing health care costs (7, 8). In this issue, Degenholtz and colleagues (9) report results from a secondary analysis of Asset and Health Dynamics Among the Oldest Old (AHEAD) study data. They found that the completion of living wills was associated with a lower rate of in-hospital deaths. On the basis of these results, the authors question the validity of previous studies that did not show an effect on the rate of in-hospital deaths. They claim that previous studies suffer from selection bias because they examined the role of advance directives only in patients in acute care hospitals. The authors raise a valid point. Yet, do their findings settle the empirical debate on the effectiveness of written advance directives? Unfortunately notI raise 2 concerns. First, half of persons still die in an acute care hospital. Thus, concerns about the effectiveness of written advance directives and the current quality of end-of-life care (10) in that setting are important for the nearly 1.1 million Americans who die in a hospital each year (49.2% of the nontraumatic deaths in 2001). Second, an association between having a living will (and not a durable power of attorney) and dying outside the hospital does not necessarily mean that the use of written advance directives decreased the rate of hospitalizations. A plausible explanation for the association between having a living will and dying outside the hospital is that persons who completed a living will were more likely to have stronger preferences for dying at home. The authors did not provide information on the content of the advance directive (for example, does the living will provide clear evidence that the person wants to die at home? ) or provide evidence of how the living will might have played a role in decisions to avoid a terminal hospitalization (for example, a bereaved family member reporting discussion of the living will that led to clarification of preferences and a plan of care to honor those preferences). It is difficult to prove that an action causes an outcome by using data obtained from observing patient care because the reasons for taking the action, rather than the action itself, may cause the outcome. Mencken, an American newspaperman and social critic, noted that complex and multifaceted solutions are needed to address human problems (1). To improve a profound human problem, such as substandard end-of-life care, multifaceted interventions are needed. Written advance directives are an important tool, but they are not sufficient. In a recent report of a 22-state survey (10) of bereaved family members, my colleagues and I estimated that 71% of persons dying in these states had completed a written advance directive before death. Despite the striking increase in the use of written advance directives, bereaved family members still reported important opportunities to improve the quality of end-of-life care. Given that the baby boomers start turning 65 years of age on 11 May 2011, public policy needs to use multifaceted interventions to address the substantial concerns of how we care for frail, older persons dying from chronic, progressive illnesses. By citing Mencken's quotation, I don't mean to imply that advance directives are unimportant. Rather, I hope that we can move beyond the debate that has focused on the effectiveness of advance directives to start listening to and acknowledging the suffering of dying persons as reported by bereaved family members (11): And then I asked the nurse, could she give [my mother] something for the pain, that [the doctor] said he left instructions for it. And he had not left any instructions for any kind of pain.The nurses called him, and he didn't want to give her anything. And, I said, Well, you know, she cannot suffer like this. I am NOT putting up with this! Not lying there in the bed, can't help herself, and hurting! And so I called her doctor, and I told him that she was going to have to have something and I was just going to call hospice if he couldn't give her something. And he hung up on me. And so, that made me mad! Degenholtz and colleagues' examination of the association between having a living will and dying outside the hospital addresses an important limitation of previous research and suggests that living wills may be effective. The validity of these findings is in doubt because no supporting evidence shows that having a living will played an important role in whether a person died in the hospital. An association between having a living will and site of death does not imply causality. One response to the findings of the study by Degenholtz and colleagues is to propose a randomized, controlled trial to measure the effects of having a living will on end-of-life care. To do so would be to ignore the wisdom in Mencken's injunction against simple solutions to complex problems. In principle, increasing the use of advance directives is important. However, they are not sufficient to address the important concerns of family members of dying patients, as illustrated in the quotation in the previous paragraph. Improving the quality of end-of-life care requires moving from a focus on single interventions, such as the living will, to a focus on public policies that use multifaceted interventions to provide competent, coordinated, and compassionate end-of-life care.