Lessons from the Schiavo Case

In response to the recent interest in the Terri Schiavo case, in which Ms. Schiavo's medical condition was described as a persistent vegetative state, and her feeding tube was removed according to her wishes as relayed by her husband following a long court battle, we have assembled the following reflections from our Calvin experts on the subject. The text for the following articles was taken from a panel discussion held for students to debate the issues surrounding the case.


The Law of the End of Life
Jeffery Tatum

Justice Oliver Wendell Holmes, Jr., observed that when studying the law, at times "a page of history is worth a volume of logic." (1) We should remember Holmes' admonition when trying to understand the controversy surrounding Terri Schiavo's death and in deciding how well the legal system worked in this case.

All states recognize the rights of mentally competent adult patients to refuse medical care. This right to refuse arises out of two legal traditions: the right to bodily integrity and the right to privacy. The right to bodily integrity has been recognized in Anglo-American law for centuries, and gives citizens the right to be free from physical assaults, unjustified intrusions into our personal space, and unwanted medical treatments.

For that reason, when a patient asks for medical help the doctors must first secure the patient's "informed consent" before drawing blood or conducting back surgery. The right to bodily integrity and the doctrine of informed consent give the patient the right to refuse to have back surgery, even if the doctor thinks the surgery would have a good chance of success.

The second tradition, the right to privacy, arises out of the Constitutional provisions that allow citizens to speak, assemble and worship according to the dictates of conscience. The Constitution protects many matters of intimate and personal choice that are central to personal autonomy, so that persons may define their personal attributes without the dictates of the state. Justice Kennedy wrote, "At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life." (2) When coupled with the right to bodily integrity, the right to privacy is what allows a Jehovah's Witness to refuse a blood transfusion and a Calvinist to refuse a fourth round of chemotherapy, saying, "Enough. I'm at peace and am ready to meet my maker."

Ideally, such decisions are made by a competent, fully informed adult who has had long discussions with her physician. If the patient is unable to communicate or is incompetent to make a decision, the cases are much more difficult. In most cases of incompetency in the United States , there is no controversy if the patient clearly appointed a decision maker (durable power of attorney) or if the family agrees on what the patient's wishes would be. When the family members disagree or have conflict with the medical staff, it frequently results in a court order.

The court will appoint a guardian to work through the decision on the patient's behalf. The spouse is the primary candidate to be the guardian. In order to make a decision to refuse medical treatment, the guardian must offer proof of the patient's wishes. A living will can give insight into the patient's desires, but living wills are often too ambiguous to be determinative.

The state has various interests at stake in the decision. The state clearly has an interest in protecting the patient, the medical profession and groups who might be pressured into making decisions against their self-interest (such as the poor). The state also has an interest in preventing abusive practices by the numerous parties involved.

In order to protect all the parties' interests, the guardians must act with a minimum of self-interest, and the wishes of the patient must be proven with clear and convincing evidence (a moderately high standard). Judges want assurance that the decisions are based upon the wishes of the patient, rather than the resources of the family or the hospital.

If the guardian has some personal stake in the patients condition, the court may appoint a second type of guardian, called a guardian ad litem , who is appointed to solely represent the interests of the patient. In theory, the "GAL" will represent the patient independent of the family and caregivers' interests.

In the Schiavo case, all parties agreed that Ms. Schiavo was not mentally competent. Her husband, Michael, was appointed as guardian with the consent of all parties. At various times, the courts also appointed a GAL to represent Ms. Schiavo's interests in the case.

Given the allegations made by family members, politicians and social movement advocates, it is no wonder that many rumors surfaced about the facts of the Schiavo case.

In an effort to sort out the conflicting claims, in late 2003 both Gov. Jeb Bush and a trial judge appointed a GAL to sort through the facts of the case and produce an independent report.

They appointed Dr. Jay Wolfson, an attorney and professor with a doctorate in public health, who was capable of working through both the medical and legal aspects of the case. Wolfson read through the massive record (nearly 30,000 pages of court records alone), interviewed the family members, doctors, nurses and therapists involved.

He also spent significant time in the room with Ms. Schiavo, both alone and in the presence of various family members. Wolfson gained the trust of all family members, and after he issued his December 1, 2003, report to Gov. Bush, both sides of the family asked that his appointment as GAL be made permanent. The full text of Wolfson's report is available at news.findlaw.com/hdocs/docs/schiavo/1203galrpt.pdf.

In short, the questions before the court were Ms. Schiavo's diagnosis and what she would have wanted done. In late 2001, the courts asked five physicians to personally examine Ms. Schiavo and her medical record and submit a report. Michael Schiavo and the Schindlers each named two, and the court eventually named the fifth. In October 2002, after accepting exhaustive testimony and conducting a detailed hearing, the court ruled that there was no substantial evidence that Ms. Schiavo's condition could be improved, and ruled that there was clear and convincing evidence that she was in a persistent vegetative condition.

This diagnosis would allow her care to be removed under law, if such was her wish.

On the question of her intent, Michael offered evidence of conversations from three persons, referencing specific conversations in which Ms. Schiavo commented that she did not ever want to be placed on life support. The conversations all took place around the time of the funerals of family members who had been on artificial life support.

The trial and appellate courts all deemed the evidence credible and consistent, and all found that there was clear and convincing evidence that she would have wanted her medical care removed. Despite numerous appeals and ancillary lawsuits, and numerous opportunities to present new evidence on these claims, the Schindlers were never able to convince any court to overturn that ruling.

Holmes' observation fits well when trying to understand the controversy surrounding the case. Life and death decisions in American hospitals happen every day without public notice. But in the Schiavo case the patient lived more than a decade, the family broke down in bitter and protracted fighting, and social movement groups became involved with enough resources to drag the proceedings through multiple courts and legislatures. Groups came to be involved who could afford the legal time to pay for numerous attorneys, dozens of amicus curiae briefs (on all sides of the issue) in multiple courts, and ultimately major legislative efforts at the state and federal levels. Interest groups on all sides saw an excellent chance to promote their own agenda and use this unusual case to try to shape American law.

As a result, several rash statutes were passed. One represented an unprecedented expansion of the habeus corpus powers of all federal district courts over every vegetative patient in America without a written directive. The Florida statute focused on one medical protocol (hydration and nutrition tubes embedded directly through the abdominal wall) while ignoring a host of others, often with potentially ludicrous results. Imagine a family that can order a "do not rescusitate," withhold antibiotics, remove a ventilator and refuse dialysis, but still have to have the feeding tube surgically embedded because such tubes are required under law.

In short, the Schiavo controversy in the media, unfortunately, had as much to do with social movement activism and family dynamics as it did logic. The Schiavo controversy was based in part on an application of current American law, a great deal of misinformation given to the public and efforts to rush simplistic proposals for complex problems in biomedical ethics through the federal and state legislatures. The controversy was good, because as a nation we need to re-examine how to regulate the cases of mentally incompetent medical patients. But our first question should be, "What should we do with patients in a persistent vegetative state?"

1 New York Trust Co. v. Eisner, 256 U.S. 345, 349 (1921).

2 Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992) (plurality opinion).

— Jeffery Tatum is an assistant professor of sociology and is Calvin's pre-law advisor for students. He practiced law as a litigator for eight years and is completing his dissertation with the University of Virginia on the sociology of bioethics and law in the assisted suicide debates. He recently delivered a presentation in Washington, D.C., on the Sciavo case.

The Four-Part Series:
Positive Outcomes of the Terri Schiavo Case — Hessel Bouma III
Shedding Light on the American Health Care System — Cheryl Brandsen
The Law of the End of Life — Jeffery Tatum
Resources for Advance Care Planning — Karen VanderLaan