The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 41, Issue 4.)
Seven in ten Americans over age 60 who require medical decisions in the final days of life lack capacity to make them. For many of us, the biggest life-and-death decisions of our lives—literally—will, therefore, be made by someone else. They will decide whether we live, die, or experience a fate worse than death; between long life and quality of life; the level of risk or suffering to assume in the hope of a cure; whether we receive comfort care or heroic interventions in our last hours; and whether we die at home or in a hospital. They will determine whether our wishes are honored, forgotten, or betrayed and choose between fidelity to our interests and what is best for themselves or others.
They will also control many of the expenditures on health care near the end of life, much of it, studies find, for unwanted treatment. Yet despite their critical role, we know remarkably little about how they will decide for us.
Speaking for the Dying (University of Chicago Press) tells their story, drawing on daily observations over more than two years in two intensive care units in a very diverse urban hospital. As flies on the wall, the author and a medical social worker observed more than 1000 encounters and family meetings between almost 300 different health care providers and more than 700 family and friends of patients without decision-making capacity.
In Their Own Words
From bedsides, hallways, and conference rooms, the book conveys, in their own words, how physicians really talk to families and how loved ones respond, inquire, ignore, justify, plead, or disagree. It shares how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects.
A major theme of the book concerns the role of law and especially advance directives in medical decision making on behalf of these ICU patients unable to speak for themselves. The book exposes the limited role of advance directives in structuring the process decision makers follow, the outcomes that result, or even the impact on the patients’ loved ones.
Like American adults in general, only a minority of patients in the two ICUs had an advance directive—proxy directives that name a decision maker and/or instructional directives that specify treatment preferences. For those with instructional directives, observations, day after day, over the course of their ICU stay tracked when anyone asked about or referred to the directive, how it was used to formulate or justify decisions, and the correspondence between treatment preferences articulated in the directive and the host of decisions made on the patient’s behalf. Speaking for the Dying reveals that these directives played no discernable difference for almost half the patients who had prepared them and that, among the remaining patients whose directives did make a difference, directives were at least as likely to undermine their wishes as to help honor them.
Moreover, comparing the decision-making process, outcomes, and impact between decision-makers armed with advance directives and those without them, the observations found little difference: Treatment decisions were no different, they drew on the same criteria, were made no faster, and were no less burdensome on the patient’s friends and family.
There was little evidence that directives helped to ensure fidelity to patient wishes or to protect loved ones, the reasons advocates have been imploring Americans for more than a half century to prepare them.
Given that directives played such a small role in the decision-making process, Speaking for the Dying considers at length the criteria that families formulate and follow to make life-and-death choices for their loved ones. Here too, the book shows that these decision criteria do not always accord with legal and bioethical standards that apply when patients fail to name a legal surrogate decision- maker or to articulate their treatment preferences in an advance directive. Perhaps even more disquieting, observations reveal how ill-prepared decision makers are for the sometimes overwhelming challenges they face. And they show that some of those decision-makers—whether named by the patient in an advance directive or chosen by legal default rules when none was chosen—were not up to the task compared with other friends and family at the bedside. Clearly, some of us are selecting the wrong people as our spokespersons or, through our inaction, allowing the law to select the wrong people in our lives to stand in our shoes. And we are doing far too little to help prepare them for this demanding role.
The Role of Lawyers
In short, looking behind the curtain of real-world intensive care units, the book shows that legal tools meant to facilitate decision making on behalf of those without capacity fail to live up to our expectations. The book explains why this is almost inevitable and what lawyers—in their professional roles and as would-be patients and family members—can do about it.
Research consistently has found that choosing life or death for another is one of the most difficult decisions of a lifetime, haunting families sometimes decades later. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers might undertake before “it is too late” and even after.
Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation. She works at the intersection of law and relationships of trust in which one acts of behalf of a vulnerable other—for example, medical decision making for patients without decision-making capacity. Her publications examine the role of law at life’s end, ethics, agency theory, conflict of interest, the professions, securities fraud and regulation, and white-collar crime. In addition to many articles, she is the author of Tangled Loyalties: Conflict of Interest in Legal Practice and Wayward Capitalists: Target of the Securities and Exchange Commission.