Over several decades, US physicians, medical ethicists, and policy-makers have worked to enhance patient decision-making at the end-of-life. States have passed laws allowing patients to express their preferences through advance directives and to appoint someone to make decisions if they are unable to do so. Some of these laws permit oral advance directives under some circumstances. Both state and federal governments have provided incentives to encourage patients to complete advance directives and discuss their care preferences with their physicians.
Despite these efforts, for a variety of reasons, few people actually complete an advance directive. Some people fear that physicians will stop treatment unnecessarily early if a patient has an advance directive. Against a history of disparate treatment, such fears cannot be discounted. It is perhaps not surprising that African Americans are half as likely to complete an advance directive as Whites.
Difficult care decisions often have to made in the absence of advance directives or even surrogate decision-makers. Our paper will focus on the legal and ethical frameworks available to guide such decision-making and the processes that can be adopted to facilitate such decisions. We will discuss how these questions differ among patients with surrogates, unbefriended elders, and pediatric patients and will explore the ways that patient vulnerabilities may influence the decision-making. Our discussion will be based on our legal and ethical scholarship addressing these questions, our decades of teaching these questions to medical and legal audiences, and our experiences with ethics committees who regularly confront these issues. Accordingly, our discussion will be theoretically framed, but practically based.
Leslie E. Wolf is Professor of Law and Director of the Center for Law, Health & Society at Georgia State University’s College of Law, with a joint appointment with the GSU School of Public Health. She conducts research in a variety of areas in health and public health law and ethics, with a particular focus on research ethics. Prior to joining the law school, Professor Wolf was on faculty at the University of California, San Francisco in the Program in Medical Ethics and the Center for AIDS Prevention Studies (CAPS), where served on the UCSF institutional review board, advisory committee regarding stem cell research, and on the General Clinical Research Center’s Advisory Committee. She has served on the Centers for Disease Control and Prevention’s Ethics Subcommittee to the Advisory Committee to the Director (2008-2012), as a peer reviewer for the Department of Defense, and has been an invited presenter to various government agencies. She is a graduate of Johns Hopkins School of Public Health (MPH, 1997), Harvard Law School (JD, 1991), and Stanford University (AB, 1988). She also was a Greenwall Fellow in Bioethics and Health Policy, a joint program between Johns Hopkins and Georgetown, from 1996-1998.
Sylvia Caley, JD, MBA, RN is clinical professor of law at Georgia State University College of Law teaching law students and other professional graduate students enrolled in the HeLP Legal Services Clinic. In addition, she teaches Health Legislation and Advocacy, a year-long course in which law students work with community partners to address health-related legislative and regulatory issues affecting the community. She is an adjunct clinical assistant professor at Morehouse School of Medicine, Department of Pediatrics. She is the director of the Health Law Partnership (HeLP), an interdisciplinary community collaboration among Children’s Healthcare of Atlanta, the Atlanta Legal Aid Society, and the College of Law. She is a member of the Ethics Committees at Grady Health System and Children’s Healthcare of Atlanta and also is a member of the Public Policy Committee at Children’s. She also is a member of the Advisory Committee on Organ Transplantation, U. S. Department of Health & Human Services. Her research interests focus on using interdisciplinary and holistic approaches to address the socio-economic and environmental issues affecting the health.