How do loved ones and others make medical decisions on behalf of an incapacitated patient in the intensive care unit (ICU)? This is the central question addressed in Speaking for the Dying: Life-and-Death Decisions in Intensive Care. To answer this question, Susan Shapiro, a sociologist and research professor, spent two years observing how surrogates make medical decisions for incapacitated patients in the neurological ICU and the medical ICU of a large urban teaching hospital in Illinois. Shapiro systematically recorded her observations and used them as data to analyze surrogate decision-making processes and outcomes in the context of the ICU. Her extensive observational study illuminates the experience of the surrogate decision-maker and to a lesser degree, the patient, and in doing so, animates advance directives and reveals their shortcomings when put into practice in the ICU. Shapiro’s study exposes how reducing medical decision-making to an advance directive is far from a simple solution. In practice, people rarely execute advance directives and when they do, applying them in the context of hospital-based critical care is neither simple, nor a reliable solution. Speaking for the Dying vividly and thoroughly documents Shapiro’s findings and sounds a compelling alert for attorneys, health care providers, policymakers, and laypeople to better understand the profound and unclear work of surrogate medical decision-making.
Shapiro begins her book by immediately thrusting the reader into the ICU. There is no preface, prologue, or introduction. Instead the reader is confronted with a small taste of the disorienting overwhelm that surrogate decision-makers experience while at the bedside of a loved one in the unfamiliar setting of an ICU. Shapiro recounts two observed scenarios. In the first scenario it is 6 a.m. and a family encounters their loved one, a 76-year-old white man, who has been intubated and attached to a ventilator in the middle of the night, despite documenting in his advance directives that he did not want to be resuscitated or intubated. The family is livid that their loved one’s wishes have been disregarded. Shapiro includes dialogue between the family and the critical care team, which adds a graphic quality to the scene:
WIFE: Pull the plug.
DAUGHTER-IN-LAW: This is not what he would have wanted.
CRITICAL CARE ATTENDING: Would he feel differently if he was able to potentially get a transplant?
WIFE: Just pull the damn plug!
In the second scenario, an equally emotional family confronts the care team treating their loved one, a 55-year-old man of Middle Eastern descent, who identifies as Christian. The man has been pronounced brain-dead at two different hospitals, but his family members insist on continuing life support while they look for another institution or provider who will agree to continue to treat him. Here again, dialogue between family members and the care team is interspersed throughout the account:
NURSE: The patient is brain-dead. That means he is dead. Because he is dead. We cannot in good conscience send a dead patient to another facility. He is dead. He has passed. There is no blood flow to the brain.
AUNT: We don’t believe it.
SISTER: People come back.
Having depicted the intensity of the emotions, and how different people react differently to death and dying and medical information, Shapiro directly appeals to her readers, explaining that “this book is or will someday be about you.” From the outset of her book, Shapiro makes it clear that she is not only interested in studying surrogate decision-making in the ICU as an academic subject. In addition, she is engaged in a broader mission to publicize the thorny and demanding issues involved, as well as the need to address them preemptively. She characterizes her work as “shin[ing] a light into that black box” that is the firsthand experience of surrogate medical decision-making in the ICU, and urges readers to look before it is too late.
After this stirring introduction to the subject matter, Shapiro devotes Chapter 2 (“The Intensive Care Unit”), Chapter 3 (“Actors”), and Chapter 4 (“Decisions”) to immersing the reader in the experience of being a surrogate medical decision-maker in the ICU. She orients her readers to the rhythms of the ICU, the professionals and laypeople who populate the ICU, and the spectrum of decisions that arise while in the ICU. Throughout these and other chapters, Shapiro continues to incorporate scenes and dialogue between families and health care providers, which enlivens her discussion.
In the following chapters, Shapiro explores how and why surrogate medical decision-making is often irrational decision-making, even when advance planning documents are involved. For example, in Chapter 5 (“Prognosis”), Shapiro highlights the difficulty that both health care providers and laypeople experience not only in assessing the odds, but also in communicating their assessment of the odds. Similarly, in Chapter 6 (“Decision-Making Scripts”), Shapiro reveals that, despite the body of law that guides and authorizes surrogate medical decision-making, unresolved bioethical quandaries and cognitive gaps on the part of both the principal and the surrogate undermine the usefulness of such rules. Moreover, according to Shapiro’s observations, even when patients execute advance directives, the directives are routinely overlooked or misconstrued by health care providers, many of whom lack an understanding of the documents’ legal significance, and disregard such directives as vague and unhelpful.
With the disconnect between legal rules and their application made clear, as well as the cognitive, bioethical, and practical pitfalls that contribute to this disconnect, Shapiro spends Chapter 7 (“Improvisation: Decisions in the Real World”) identifying and analyzing what actually happens when surrogate medical decision-makers are made to act. Since the evidence suggests that in practice, advance directives are ineffective at best and harmful at worst, Shapiro devotes Chapter 8 (“Making a Difference?”) to inquiring whether advance planning matters. Even though she admits to a despondent conclusion, Shapiro includes a final chapter that rallies readers not to give up on advance planning, but to do it better and in a more informed way.
In her final chapter, suitably titled “The End,” Shapiro urges readers to regard advance planning as the imperfect but best available option for surrogate medical decision-making. She recommends approaching advance planning not as a finite task, but rather as an ongoing process. Elements of the process include cultivating a conscious awareness of advance planning as a process rather than the mere documentation of instructions; choosing an effective surrogate capable of, and agreeable to, the difficult improvisational work; preparing the surrogate for the role through ongoing conversations; and creating better quality information on which surrogates can rely, such as resources that accurately describe medical procedures and outcomes and debunk misinformation and stereotypes about disability. Shapiro also offers ideas for how to handle the void that is left when advance planning does not take place. She cautiously proposes innovations such as providing actuarial models to help guide decision-making; developing new technology for decision-makers, such as videos, online simulations, and interactive decision aids; improving communication skills for ICU personnel; and creating a role on ICU critical care teams for a surrogate decision-making facilitator/advocate.
Lastly, Shapiro contends that “[w]hen all else fails, Americans tend to turn to law,” and so the law needs to become more responsive to the need to improve surrogate medical decision-making. She advises legal practitioners and policymakers to recognize how and why advance directives fail in practice, and that such documents are not the solution they are often assumed to be. In addition, Shapiro notes that statutory schemes that assign default surrogates are out of touch with the reality of modern families, and with the fact that family members are often not a natural or good choice for the work of surrogate medical decision-making. She also calls on lawyers and policymakers to understand the unbridged distance between established legal norms about surrogate medical decision-making and health care providers’ awareness and understanding of these norms, as well as their ability and willingness to enforce them in critical care situations. In conclusion, her advice is to “be modest about the ability of law to regulate decision-making at the end of life, and to be mindful of its potential for unforeseen consequences, especially in the ICU.”
After ending on this humbling yet helpful note, Shapiro incorporates an appendix titled “The Research” in which she discusses her research methodology. Several more appendices follow in which data are depicted in a variety of tables and charts. Endnotes for each chapter, a list of references, and an index complete her thorough investigation.
At the outset of Speaking for the Dying, Shapiro claims that her book is for everyone, “whether would-be patients, would-be surrogates or family members, health care providers, health care institutions, legal professionals or policymakers.” But her academically rigorous ethnographic study on a subject that is already difficult for many to confront, while undeniably informed and scholarly, seems a tough sell for a lay audience. The likelihood of attracting a general readership should not be the measure of the value of this book, though. It is part of the Series in Law and Society published by The University of Chicago Press, which distributes scholarly publications by academic thought leaders whose work can shift cultural discourse and practices. Shapiro herself situates her book in ongoing scholarly and policy-related efforts to “change the American way of death.” Lawyers who counsel clients on surrogate medical decision-making can be part of this movement, too, by deepening their own understanding and their clients’ understanding of how to engage in the process of advance planning. While Speaking for the Dying does not provide easy answers, it raises the issues that should be up for discussion and plumbs their depths. For this reason, Shapiro’s book is instructive for elder law and special needs attorneys seeking to become more conversant and comprehensive counselors on the topic of surrogate medical decision-making.