Health Care Reform: Is It Wrong to Ration End of Life Care?

Health Care Reform: Is It Wrong to Ration End of Life Care?

Critics of health care reform argue that it would raise costs, reduce choice and lead to the rationing of care. But when it comes to end of life care — which will account for increasing billions of the country's health care dollars in the decades ahead as the baby boomers age — rationing may not be as arbitrary and cruel as it sounds. Instead, much of the cost savings may come from "procedures" that are currently provided at the end of life, which are neither wanted nor useful, but provided out of habit, as a result of financial incentives, or through our failure to accept that death is a natural end to life.

In her new book, If That Ever Happens to Me: Making Life and Death Decisions After Terri Schiavo, Lois L. Shepherd offers a fresh perspective on the law and ethics of end-of-life decision-making through an in-depth examination of the case of a brain-damaged Florida woman whose husband and parents disagreed over whether to keep her on life support.

Shepherd, associate professor of biomedical ethics and professor of law at the University of Virginia, urges us to focus more on responsibilities to care and respect patients than on their "right to life" or "right to die." In her book, she looks behind labels like "starvation," "care," or "medical treatment" to consider what care and feeding really mean and urges greater ease in removing life support from people who are in a permanent vegetative state.

"Terri's case was special," Shepherd says, "because there was such a split between her husband and parents about what should be done. "¦ [T]his split allowed politicians to exploit the case and make it stand in for something else — for the protection of all vulnerable human life. In other words, fetuses and embryos. The case was as much about abortion and embryonic stem cell research as it was about end-of-life decision making."

"Terri's case seems an obvious one in which to make a charge of exploitation — as politicians and others used her for their advantage — but other permanently vegetative individuals are kept alive for family members or care givers or society, not for themselves," Shepherd says. "Keeping these people alive for years when there is no hope for recovery is an inappropriate instrumental use of them."

"Too often, in law and biomedical ethics especially, we link the idea of 'respect' almost exclusively to respecting a person's autonomy, or choices," Shepherd says. "But often we have too little evidence of a person's wishes. "¦ In the book I urge that we move away from framing these issues primarily in terms of a trade-off or balancing of rights — the right to die or the right to life — and think more broadly about our responsibilities to respect and care for people, especially those who are vulnerable."

Lois L. Shepherd is an expert in the fields of health law and bioethics. Her primary appointment is in the University of Virginia School of Medicine's Center for Biomedical Ethics and Humanities where she directs the center's programs in medicine and law. Shepherd, who holds a J.D. from Yale Law School, teaches courses in health care law and ethics at the University's schools of law and medicine. Within the field of bioethics and law, her current scholarly and teaching interests are in the legal and ethical issues at the end of life and human subject research.