Schiavo's Legacy: The Need for an Objective Standard

Like many who teach and write about bioethics, I was startled by the intense national interest in the case of Terri Schiavo. Her medical situation closely resembled that of Karen Ann Quinlan, Nancy Cruzan, and other patients, and for people familiar with end of life topics, the issues seemed settled. There were established rules and principles to guide the case toward a resolution.

But perhaps the public response was not so surprising. Over the past three decades, clinicians and legal authorities have constructed a basic approach to treatment decisions for incapacitated patients, but as the passions this latest case unleashed suggest, this approach is both unfinished and vulnerable to challenge. Schiavo exposed weaknesses and gaps that demand our attention.

The good news is that Schiavo provoked discussions about medicine's limits. For a while, end of life issues replaced the usual preoccupation with miracle cures from cutting edge science. Families and friends debated their views, and people learned a little about what their medical futures might be like. The bad news is that the case became a vehicle for promoting political agendas. Deficiencies in the framework that governs decisions on behalf of incapacitated patients left the Florida court rulings open to criticism.

Yet Another Campaign for Living Wills

As in every end of life case that hits the headlines, people disturbed by the treatment conflict over Terri Schiavo advised living wills as the remedy. In fact, the importance of having a living will became the main take-home message of this conflict. Unfortunately, living wills are an ineffective remedy. Anyone familiar with the literature is well aware of their shortcomings, cogently summarized last year in the Hastings Center Report by Carl Schneider and Angie Fagerlin. The commentary on the Schiavo case undoubtedly prompted many people to register their wishes to refuse or receive various medical interventions at some future point, but the empirical evidence indicates that they did not necessarily understand what they were choosing and that the forms and statements will supply limited guidance at the bedside.

If history is any guide, patients with living wills will remain in the minority. Living wills have been promoted since the 1970s, with an especially big push fifteen years ago, when Congress last weighed in on end of life decisionmaking and passed legislation designed to encourage them. Yet despite these efforts, the documents have yet to become a major factor in decisions at the bedside.

Doubts about Substituted Judgment

Since Terri Schiavo had no living will, the Florida judges applied the "substituted judgment" standard to reach a decision about her care. This standard aims to produce the decision the patient would make if able. The evidence adduced to gauge what that decision would be includes the individual's informal remarks, her religious and cultural background, and whatever is known about her attitudes toward medical care. The courts found that Ms. Schiavo's former statements constituted clear and convincing evidence that she would refuse the medical nutrition and hydration prolonging her life.

Yet the courts also recognized that the evidence was not all that strong. One of the judges on the Florida Appeals Court commented on this in 2001:

The testimony in this case establishes that Theresa was very young and very healthy when this tragedy struck. Like many young people without children, she had not prepared a will, much less a living will. She had been raised in the Catholic faith, but did not regularly attend mass or have a religious advisor who could assist the court in weighing her religious attitudes about life-support methods. Her statements to her friends and family about the dying process were few and they were oral.

Much of the opposition to the Florida court rulings was built on weaknesses in the substituted judgment standard. The testimony about Ms. Schiavo's previous statements was general enough to raise doubt about whether she would indeed have refused nutrition and hydration. And years after her brain injury, with her family so divided, could anyone really know what she would decide if she were, in the language of the Quinlan court, "miraculously lucid for an interval . . . and...