Living and Dying in a Post-Schiavo World

JURIST Guest Columnist Tom Mayo, professor of law at Dedman School of Law, Southern Methodist University, and Director of the Cary M. Maguire Center for Ethics and Public Responsibility, says that the Terri Schiavo case earlier this year changed the ground-rules for medical decision-making on behalf of others...



As most of the world knows, fifteen years after suffering an anoxic brain injury and after seven years of more or less continuous litigation, Theresa Marie Schiavo died in a hospice in Largo, Florida, on March 31, 2005.

Terri Schiavo's death came twenty-nine years to the day after the New Jersey Supreme Court handed down its landmark opinion in Matter of Karen Quinlan. The key issues in Quinlan were the same ones that fueled the Schiavo controversy: (1) Was there any reasonable prospect that the patient would ever emerge from her unconscious state? (2) If not, who should be the surrogate decision maker? (3) Should the surrogate decision maker's authority extend to the removal of life-supporting treatment, and if so, on what basis? The court's decision in the Quinlan case was the first from a state supreme court that recognized the right of a close family member (in that case, a parent) to direct that life-sustaining treatment (a ventilator) be removed from a patient in a persistent vegetative state.

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For the better part of three decades, we have been living in a "post-Quinlan world." State-by-state, legislatures and courts have worked out the basic ground-rules that guide medical decision making for patients who cannot make those decisions for themselves. While differences exist as to the details, the broad contours in most states follow the general pattern set out in the New Jersey Supreme Court's 1976 opinion.

In our post-Quinlan world, unless the now-incompetent patient previously designated a different decision maker, a close family member (usually identified by statute in a list of next-of kin, in order of preference) may decide, with the attending physician, to withhold life-sustaining treatment (including, in most states, artificial nutrition and hydration) from a patient diagnosed to be in a terminal or irreversible condition. Some states require a high level of proof as to the patient's prior wishes on the matter. Some states require quite specific statements by the patient (when competent) as to the precise medical circumstances under which particular life-sustaining treatments should be withheld or withdrawn. In all states, however, a patient's legally recognized surrogate decision maker may direct that life-sustaining treatment not be provided if the surrogate can demonstrate by clear and convincing evidence that the patient would not want the treatment under present circumstances.

After March 31, 2005, it may be more accurate to say, as an ethics colleague of mine has suggested, that we are living in a "post-Schiavo world." Just what this post-Schiavo world will look like, only time will tell, but the indications are unsettling. Here are a few of the developments that will bear watching:
  • Legislators Behaving Badly

    The intensity of the litigation concerning Terri Schiavo's treatment made that intrafamilial controversy remarkable. What made the controversy flabbergasting was the role played first by the Florida legislature and then by the United States Congress. The Florida lawmakers authorized Governor Jeb Bush to take over the case, to overrule all judicial orders that were still extant, and to order the reinsertion of Ms. Schiavo's feeding tube after it had been removed in October 2003.

    Then, as the case was winding down this year, the Florida legislature couldn't agree on another intervention strategy, so the Congress moved in. Congressional committees called Terri Schiavo, her husband, and her caregivers to testify about the quality of care available to patients with chronic disabilities. The extraordinary invitations in turn triggered the operation of a federal law that makes it a crime for anyone to interfere with the ability of an individual to testify before Congress. The use of a tool that ordinarily is directed at the bosses of organized crime families speaks volumes about the mindset of the legislators behind this move. In apparent recognition that their invitation to testify was not having the intended effect, Congress then passed a jurisdictional statute that allowed the parents of Terri Schiavo to go to federal court to get review of the voluminous Florida proceedings. A few days later, Congressional committees sought to intervene as parties in the Florida litigation.

    The Harris Poll reported on April 15 that 57 percent of the public disapproved of the Florida legislature's behavior and 58 percent disapproved of Congress' handling of the matter. You might expect lawmakers to be somewhat chastened by the public's decidedly negative reaction to their involvement in what many regard to be a private matter. But public criticism did not stop Rep. Sheila Jackson Lee (D-Tex.) from intervening in late April in another right-to-die case in Houston.

    The willingness of families who have lost their end-of-life court battles to appeal to legislators appears to be a new development, albeit an understandable one. What is not understandable (at least to me) is the willingness of legislators to get involved in a most nonlegislative way in these cases.

  • What Treatments are Optional?

    It apparently came as a surprise to a lot of members of Congress and the public that "artificial nutrition and hydration" ("ANH") is deemed to be "life-sustaining treatment" and therefore is an intervention that may be refused on behalf of an incompetent patient under Florida law. In fact, most states regard ANH the same way. This was not the case in 1976, but a majority of ethicists, clinicians, and courts have gradually accepted the notion that ANH may, at least under some circumstances, be just as "extraordinary" and just as optional as, say, a mechanical ventilator or dialysis. As a result, in most jurisdictions ANH may be withheld or withdrawn on the same basis — including substituted judgment or, when applicable, the best interests of the patient — as any other life-sustaining treatment.

    These principles and practices will change in a post-Schiavo world if groups like the National Right to Life Committee have their way. Building on the public's interest in the Schiavo case, NRTL is promoting its "Model Starvation and Dehydration of Persons With Disabilities Prevention Act." The Act would create a presumption against the withholding of ANH unless that outcome was explicitly contemplated in the patient's living will or if there is "clear and convincing evidence that the person . . . gave express and informed consent to [rejection of] nutrition or hydration in the applicable circumstances." Iowa has a version (pending as House Study Bill 302), as does Florida (HB 701), and — according to news reports — Alabama, Hawaii, Louisiana, Mississippi, and South Dakota (sometimes filed under a different name).

  • Mis- and Disinformation

    Throughout the media frenzy surrounding the last few weeks of Terri Shiavo's life, I kept wondering, "where are the neurologists (and gerontologists and palliative-care specialists)?" If members of the lay public are now thoroughly confused about vegetative states, the minimally conscious state, coma, and brain death, as well as the physiological experience of end-of-life dehydration, they can hardly be blamed. Wild theories with no scientific or medical basis had seemingly ready access to the airwaves. Any future public debate on reforming our end-of-life laws will first require serious and sustained educational efforts to counter the misinformation that was pumped out through the media.

    All of us with a professional interest in this subject should be willing to play a part in the educational process. For our own benefit, we would do well to prepare for the public discussion, perhaps by reading the careful and thoughtful articles in recent issues of JAMA and the New England Journal of Medicine by Larry Gostin, Tim Quill, and George Annas.



Tom Mayo is a professor of law at Dedman School of Law, Southern Methodist University, and Director of the Cary M. Maguire Center for Ethics and Public Responsibility.
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