Abstract
Speaking for the Dying: Life-and-Death Decisions in Intensive Care is a sad book. Not because most patients die in the Intensive Care Units or because families face heart-wrenching decisions to withdraw care or pursue aggressive, last-ditch treatment. That’s sad too, but the book saddens mostly because with the author’s access and the amount of research this could have been an amazing piece of scholarship. Instead it falls short.
The research consists of Susan Shapiro and Rachel Angulo’s (a medical social worker who worked as a research assistant) observations in a neurological and a medical intensive care unit, circling the bedsides of very sick patients and their relatives as they faced the decision to continue or stop treatment. Attending more than 1,000 such exhausting meetings is impressive. The motivating research question is how surrogate decision-makers rise to the occasion to make difficult decisions and what criteria they privilege when contemplating life or death.
The book is observational but not ethnographic: Shapiro has a narrow focus on the talk at the bedside, ignoring the social context of the ICU, interactions among the different parties, and the social embeddedness of families and staff. People, for instance, are reduced to their professional position if they are medical staff and relationship to the patient if they are surrogate decision-makers.
With such a narrow focus, we would hope that the observations are solid. Alas, that’s not the case. The data consist of reconstructed conversations written down after the meetings. The gold standard in social science is to rely on audio or video recordings, but the researchers did not even take notes during the consultations. Shapiro asserts in the appendix that we should trust that her notes are accurate and reliable, but she does not provide any evidence of accuracy (for instance, by comparing a recorded transcript with a reconstructed one). Rather than paraphrasing the gist of a conversation and quoting a telling phrase that stood out, the book leans into this methodological weakness and reproduces pages and pages of reconstructed dialogue. The talk also reads whitewashed: the clinicians and patients, for the most part, sound like reasonable Midwestern folks, talking evocatively in full paragraphs that are more or less the same length. They do not interrupt, repeat, stumble, or talk in roundabout ways. That’s not how clinicians and patients converse in the studies that use recordings. That’s not how a racially and educationally diverse population talks.
Compounding the questionable data is the lack of analysis. The first 133 pages are mostly descriptive. Shapiro strings along topics with quotes and sprinkles statistics in ways that could have made sense in a quantitative study but have little meaning in qualitative work. For instance, Chapter Four describes the decisions families face —such as tracheotomy, dialysis, surgery— providing stats for each of those; but these statistics are pretty meaningless in the context of a convenience sample, especially since these differences do not matter for the rest of the book.
The last 120 pages have more of an analytical bent: Shapiro distinguishes several criteria family members use to motivate their decision and then shows whether these criteria are more likely to lead to aggressive care and whether they result in different patient outcomes. She finds, for instance, that “opting out” is more likely to result in aggressive care than “reprising patients’ wishes.” However, in the end it may not matter much. “On the one hand, most of the trajectories lead to the same destination—almost everyone who is more critically ill dies in the ICU or shortly thereafter. On the other hand, surrogates who strive for fidelity to patient wishes and who follow legal and ethical decision-making standards—whether intentionally or unknowingly—tend to experience the greatest emotional distress” (p. 232).
Shapiro finds that advance directives do not clarify the situation—in half of the small group of patients with advance directives, the directives are insufficient for the situation at hand—and that medical staff are powerful in steering relatives to what they consider in the patient’s best interest. This is not surprising. We have known about the limited power of advance directives from clinical trials and Renee Anspach, Daniel Chambliss, Robert Zussman, Jeanne Guillemin, Carol Heimer, Sharon Kaufman, and Roi Livne have not just documented but explained why clinicians tend to prevail in life-and-death decision-making. In light of the rare privilege to witness decision-making at critical life-or-death moments, it’s disappointing that Shapiro did not capitalize on such an opportunity.