The most significant "life-and-death" decisions of our lives are overwhelmingly made by others who act on our behalf when we are not competent to make our own medical decisions. Yet scholars know next to nothing about how our brothers' keepers make these life-and-death decisions. This study asks who these surrogate decision makers are and how they have been selected. How do they conceive their role? How do they process complex medical infor-mation? What criteria do they use to make medical decisions and what process do they follow? What ethical challenges do they face? How do these instant fiduciaries comport themselves compared to others in positions of trust? What happens when significant others disagree about the proper course to take? What about when patients have no one to speak on their behalf? What impact do advance directives have? What role do legal statutes and case law play in the vast majority of end-of-life decisions that do not end up in the courts? What role do health care practitioners play in framing and influencing decisions? How do decisions change over the course of hospitalization? What are the different trajectories surrogates take as they negotiate the lives and deaths of those who can no longer speak for themselves? And how do those trajectories and their outcomes vary by characteristics of patients and surrogates?
The study is set in the neurological intensive care unit of a large urban teaching hospital serving a very demographically diverse body of patients, many of whom are unable to make their own medical decisions. The study involves the unobtrusive observation of day-to-day interactions between health care providers and patient families, friends, guardians, and significant others as decisions are made to pursue aggressive medical care, withhold or withdraw life support, or donate organs. The study records the questions the latter ask, the concerns and values they articulate, their statements about the patient, the memories, reasons, and justifications they share, the things they don't say or ask, the disagreements among one another they negotiate, as well as the decisions that they make and remake. In addition, the study provides information on how health care providers interact with these spokespersons for their patients, the conditions under which they confer with them, and how they frame the issues, advise them, and influence the decisions. Because observational methods are extremely rare in studies of end-of-life decision making, these data are expected to reveal what has remained hidden from previous inquiries, expose some of their biases, and explore the ways in which our understandings or perhaps misunderstandings may have been shaped by problematic research designs.
By chronicling how surrogates decide rather than simply what they decide (as much previous research has done), the data expose how these decision makers act as gatekeepers who facilitate or stand in the way of policies designed to change the way we die and provide insight into why seemingly guaranteed policy interventions have failed and why it is that the ends of our lives often follow such an expensive course. Research findings may encourage legal policymakers to change or clarify existing law in light of the existing legal standards in order to facilitate decision making at the bedside, improve how clinicians talk with families about end-of-life decisions and empower them as more effective gatekeepers, and help all of us better prepare for the decisions we face or that others will face on our behalf so that we will be well served by our surrogates or at least that those left to advocate for us will have an easier time. This project will yield a book and articles accessible to scholars (in social science, law, medicine, and bioethics), policymakers, and the general public.
