FOCUS: Unique Circumstances, Broad Lessons

Theresa Marie Schiavo’s tragedy has become a cause celebre for the pro-life and disability rights movements. No one is helping her parents cope with the sad facts that their daughter has lost all cognition and exists in a state in which she did not wish to exist. Rather, activists have used Schiavo’s story to prompt unprecedented actions from state and federal legislators, trampling on the judiciary and the Constitution in the process.

One of the most fascinating aspects of the case, however, is its very ordinariness in the realm of end-of-life decision-making law. Schiavo breaks no new ground. It does not go out on a limb in any sense of the word. It simply combines into one complex package three hot-button issues that encourage reliance on emotion and rhetoric rather than on medical facts. The combination has permitted pro-life and disability rights activists to capitalize on visual images and strong religious beliefs to promote a broad social cause, to the detriment of Schiavo and her family.

The first hot-button issue this case raises is that of artificial nutrition and hydration. Lest you believe the rhetoric about food and water being at issue, let’s be clear: the procedure at issue involves the infusion of a liquefied mixture of nutrients into Schiavo’s stomach through a tube inserted in her stomach wall. Even calling that tube a “feeding tube” gives the incorrect impression that somehow Schiavo, who has no awareness, has the capacity to enjoy food just as you and I do. Nothing could be further from the truth. She is not able to enjoy meals, contrary to some media reports. She is not able to eat the bread and water some demonstrators have attempted to deliver to her hospice bedside.

Some people, especially of strong religious faiths, believe that the administration of artificial nutrition and hydration is somehow different from the administration of other medical treatments. But look at it this way. Schiavo’s body can no longer function, and the tube inserted into her stomach is one high-tech method of picking up where her body has failed. This administration of artificial nutrition and hydration is just like using a ventilator to take over when a person cannot breathe on his or her own. It’s a medical means of substituting for a bodily function—appropriate in the short term to permit the body to recover, but inappropriate to use for extended periods of time as the only hope of maintaining the patient’s heartbeat.

The second hot-button issue this case presents is the issue of patients in a persistent vegetative state (PVS). Patients in PVSs, sadly, do not appear to be unaware, even though they are. A CT scan of Schiavo’s brain (available at http://www.miami.edu/ethics/schiavo/CT%20scan.png) reveals that the majority of her brain is liquefied. But, sadly, to a hopeful parent, movements and sounds can indicate some sort of response rather than reflex. Cases involving PVSs—and there are many—often are difficult for precisely that reason.

Finally, there is the human-interest hot-button issue: family disagreement. It has become fashionable to vilify Michael Schiavo as an uncaring husband who cohabits with and has children with another woman. Juxtapose that image against the photos of weeping parents and siblings, and it is easy to predict the winner of the sympathy vote.

Family disagreement can indeed push a case into litigation when not dealt with early on. If skilled professionals can mediate the issues early on, however, family members can come to accept medical facts and agree on what they believe the patient would have wanted. And that, after all, is the issue: not what Terri Schiavo’s parents want; not what Michael Schiavo wants; but what Terri Schiavo told her husband long ago what she wanted. Families must learn, and hundreds do each day, to put aside their disagreements about end-of-life care and focus on that central inquiry.

Interestingly, in all that has been written on this case, and all the fact-finding that has been done in six-plus years of litigation, it appears as if no one ever asked an institutional ethics committee for an opinion or for assistance in talking with the family. If that is the case, then those involved in this case missed a valuable opportunity. Ethics committees are interdisciplinary bodies of medical professionals, social workers, clergy, and sometimes lawyers. In part, they examine ethical questions and assist in mediating between family members and caregivers in cases of confusion or disagreement. A take-home point from this tragedy may be that such committees should be drawn into conversations early on, to try to avoid escalation and contentious staking-out of positions.

Another take-home point has been oft-stated and is especially important to those of us in the state of Florida. Here, because of this case, our legislators are considering a bill that would force each Floridian to submit to the administration of artificial nutrition and hydration if he or she had not expressed, in writing, the desire to refuse such treatment. Advance directives are important. If you don’t have one, get one, even if you are so young that any possibility of death seems remote. Schiavo was only 26 years old when she suffered the cardiac arrest that left her in this condition; you’re never too young to think about these issues. You don’t need an attorney to execute an advance directive, and many reputable websites such as http://www.compassionindying.org can provide forms that comply with your state law. And don’t stop there; discuss these issues with your family and friends, especially the person you decide to appoint as your surrogate decision-maker if you are unable to make medical decisions yourself.

In the end, Schiavo is not about cutting-edge law. It is not about rare conditions. It is about emotions and hot-button issues. It should leave us anxious to involve professionals to mediate discussions among families on end-of-life care and to complete our own advance directives. If we do, then perhaps the Schiavo family’s agony will have served some purpose.

Kathy L. Cerminara is an associate professor at Nova Southeastern University Shepard Broad Law Center in Ft. Lauderdale, Fla. She also co-authors a legal treatise, The Right to Die: The Law of End-of-Life Decisionmaking.