Nothing's Settled

Lois Shepherd's book If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo demonstrates a great appreciation for the unresolved conflicts over end-of-life care revealed by the Schiavo case. Through detailed analysis, this book debunks the claim that the controversy defied an established consensus concerning the appropriateness of withdrawing medically administered nutrition and hydration. Arguments that settled legal standards provided a stalwart framework for that consensus failed to appreciate the variations and limitations of those norms. Shepherd challenges the notion that we professionals—doctors, lawyers, judges, and bioethicists—had authoritatively resolved the moral and social significance of withdrawal of nutrition and hydration.

In fact, law is where we have kept our conflicts alive. The controversy over Terri Schiavo's care demonstrated the startling capacity of the legal system to be used to extend disputes beyond reasonable bounds. Observed more closely, the case shows how our laws have embedded unresolved tensions within the framework for surrogate decision-making relating to end-of-life care.

Legal standards for surrogate decision-making in the United States require a highly individualized inquiry into a particular patient's desires in anticipated and unanticipated medical situations as she may or may not have communicated them to others. Much of the judicial crafting around life-sustaining treatment decisions has focused on establishing a particular evidentiary standard for determining the particular patient's choice. This approach reflects respect for individual liberty in intimate decisions, as well as deference to America's moral and religious pluralism. In focusing on variation among individuals and in failing to establish a substantive rather than process norm for withdrawing treatment, however, the current legal framework ensures continuing battles over the morality of specific decisions and clashes over significant facts in particular cases.

Most states still have discrete threads rather than a full fabric of law that is applicable to end-of-life decision-making. States often have only one or two appellate cases addressing such issues, and the rulings in them are usually confined to the facts of the case before the court or to closely related situations that the court can imagine and address in dicta. And much of existing case law involves persons in a permanent vegetative state, relying on reasoning stemming from the condition's irreversibility and the patient's absence of awareness—so much so, in fact, that some states have what amounts to "PVS law," rather than case law on life-sustaining treatment generally. Furthermore, living will and durable power of attorney statutes in many states reflect the compromise of principles that occurs in the legislative process and refer to particular medical conditions, like terminal illness or irreversible coma, and to nutrition and hydration as distinct from other treatment.

Legal academics meld general common law principles, constitutional theory, and various state laws into a "consensus" on legal standards. Practicing attorneys, however, must focus on particular decisions for particular patients in a particular state and in many circumstances can't tell their clients with certainty what the law is. This indeterminacy can be a problem in situations where interpersonal conflict persists and escalates, but it may not be particularly concerning in most cases. When treatment decisions proceed without conflict, law tends to stay in the background. For example, the high standard for clear and convincing evidence established by Cruzan v. Director, Missouri Department of Health does not make it impossible for surrogates to decide to withdraw nutrition and hydration in Missouri, even where evidence of the patient's choice fails to meet the standard. But the fact that law doesn't necessarily determine decisions in particular cases doesn't mean that a consensus on applicable legal standards exists. Physicians and surrogates continue to draw lines that don't conform to the so-called consensus. As David Orentlicher recently observed in the Annals of Health Law, doctors and nurses continue to react differently to withdrawing rather than withholding treatment, for example, and physicians are more hesitant to...