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  • Speaking for the Dying: Life-and-Death Decisions in Intensive Care by Susan P. Shapiro
  • Jason Rodriquez
Speaking for the Dying: Life-and-Death Decisions in Intensive Care
By Susan P. Shapiro
The University of Chicago Press, Chicago and London 2019, 368, pages. https://www.press.uchicago.edu/ucp/books/book/chicago/S/bo38181601.html

People who are hospitalized and unable to communicate have the right to a surrogate, typically a spouse or other family member, who is empowered to make decisions about their care. In the intensive care unit, where life-and-death decisions are made every day, surrogates play a very important role whose challenges are heightened by the emotional intensity of representing a critically ill loved one and the asymmetry embedded in the relationship between its clinicians and outsiders. Considering the aging of the population and ability of intensive care medicine to keep people alive long after they would otherwise be dead, it is more important than ever to illuminate the experiences of surrogate decision-makers and understand how their decisions are shaped by the social structure of intensive care. A sizeable literature already exists on these issues, yet virtually none of it compares to Susan P. Shapiro's fantastic book, Speaking for the Dying: Life-and-Death Decisions in Intensive Care.

Shapiro, a sociologist and research professor at the American Bar Foundation, draws from 2 years of observational data and patient medical records to examine the issues surrogates face when making decisions for loved ones. The book beautifully illustrates the surprisingly wide range of decision points, treatment options, and social actors that dwell in the ICU. We learn about the surrogates' considerations, but we also learn about the interactional strategies clinicians use to guide the laypeople among whom they are charged to share decision-making. For example, physicians often framed decisions for surrogates not as decisions at all, but rather as an answer to a question about what the patient would want. Physicians also were not particularly shy about their recommendations.

People tend to think of ICU decision-making as a binary choice between "keep going" or "pull the plug," but Shapiro's analysis shows a spectrum of interventions surrogates consented to that in some cases appeared like a tidal wave out of nowhere and in other cases dragged on for weeks or even longer. She observed an uneven application of informed consent procedures, finding "considerable variability in the formality and comprehensiveness of the conversation" (p. 76). While this finding may not be particularly new, what is new is the access Shapiro had to observe these processes as they were happening. The same can be said for the finding that advance directives don't direct care. For those who had a directive, only one third of the time were they mentioned either by the clinicians or the surrogates. Shapiro concludes, "the directive was more a coda than a leading melody" (p. 165).

The decisions surrogates made led to one of seven trajectories of care that ranged along a continuum of fulfilling the patients' wishes on one end and fulfilling the surrogates' wishes on the other. Surrogates for patients who were white, older, sicker, Catholic or Jewish, and a non- parent of the patient were more likely to take a pathway that fulfilled patients' wishes. These patients spent about nine days on the ICU, while patients whose surrogates took a pathway of fulfilling their own wishes stayed 24 days. The more critically ill patients died regardless of length of stay.

Most of the data in Speaking for the Dying come from transcripts of the interactions between clinicians and surrogates at the bedside during rounds. The transcripts are captivating, but reconstructed entirely from memory after rounds had concluded. Shapiro and her research assistant found reconstructing the interactions to be "far easier than we had expected" because of their riveting emotional character, but admitted that "we missed a lot" (p. 260). The observational data are reinforced by the medical records, which allowed Shapiro to follow patients' care over time and are used very effectively throughout the book. Taken together, the data are persuasive and likely to generate new research questions that will deepen our understanding of surrogate...

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