Gatekeepers at Life's End: Surrogate Decision Making in Intensive Care

Award Year: 2011	Investigator: Susan Shapiro	Budget: $312,388	Categories: End of Life Care
Abstract: The end of life epitomizes a public health priority: "high burden, major impact, and a potential for preventing the suffering associated with illness." Less apparent, life's end for a majority of Americans is in the hands of others, gatekeepers who control their end-of-life medical care. Until now, the process by which treatment decisions were considered, made, and remade for those who lack decisional capacity had eluded rigorous empirical examination. As a result, we do not know why patient wishes are honored, thwarted, or transformed; why interventions to change the American way of death succeed or fail; or what structures, factors, or gatekeepers stand in the way of choosing alternative goals of care. In short, we lack the information necessary to shape effective policy regarding medical care at life's end. Susan Shapiro draws on unprecedented observational research in two intensive care units, analyzing more than 1,000 encounters between health care providers and friends, family, and significant others representing patients who lack decisional capacity. The research was conducted day after day, as these end-of-life trajectories took shape and changed course. In a book and multiple articles, Shapiro will examine how surrogates make medical decisions on behalf of patients unable to speak for themselves, the factors that influence the process, the outcome of decision-making, and how these gatekeepers enable or preclude one end-of-life trajectory over another. Shapiro will also address the role of law, advance directives, and regulation in surrogate decision making and how surrogates illuminate fundamental questions about trust and fiduciary responsibility.