Making Medical Decisions for the Profoundly Mentally Disabled

This book is the 15th in the Basic Bioethics series edited by Glenn McGee and Arthur Caplan. Norman Cantor, professor of law and justice at Rutgers University School of Law, contributes to this series by analyzing the legal and moral status of people with profound mental disabilities that prevent their exercise of medical self-determination. He focuses on the U.S. law that covers decisions made on behalf of profoundly disabled persons and, especially, what decision-making standards or criteria are applicable. By necessity, he also examines the ethical, moral, cultural, and political factors that apply to this special population and influence the application of these legal boundaries.

All professionals who serve this population are familiar with the enormous range of interests about which decisions have to be made by and for people with profound mental disabilities. These range from daily or mundane decisions to lifestyle decisions, such as where to live or work, and life-altering medical decisions, such as whether or not to be a tissue and organ donor or a research subject and end-of-life decisions. The guiding principles for surrogate decision making are outlined in this book and help define its broad audience.

The first chapter looks at the concept of personhood for people who lack the capacities of reflection, communication, and interpersonal interaction that our culture commonly associates with rights-bearing people. This basic principle of personhood entitles profoundly disabled people to enjoy full protection of their interests in liberty ( 1 ). Paramount is the right of persons with a profound disability to have a surrogate make decisions for them. Another important aspect of personhood is the entitlement to respect for dignity. These concepts are discussed as a basis for the legal and moral rights of people with profound mental disability and how their consideration imposes significant protections against unconscionable exploitation of this population.

The balance of this book concentrates on serious medical and surgical decisions that affect the bodily integrity of people with profound disabilities. These include participation in medical research, abortion and sterilization, organ and tissue donation, and the withholding or withdrawal of life support. Surrogate decision making on these matters is examined not only in light of the above basic principles but also with regard to who is entitled to act as a surrogate decision maker, what standards should the surrogate should apply—substituted judgment, best interests, or some other standard—and the role that human dignity plays in shaping the fate of a patient who has a profound medical disability.

Although this book is part of a series on basic bioethics, it is a well-referenced, scholarly work with copious notes and references contained in the last third of the volume for people interested in exploring further the foundations of the applicable legal concepts. This construction allows for a very readable style that students and clinicians will welcome.

Cantor's book is a valuable reference not only for professionals who sit on institutional bioethics committees, but also for clinicians who serve people with profound mental disabilities and counsel their surrogate decision makers as they consider important medical issues.