She was one of 55 bioethicists who joined the amicus curiae brief submitted to the Florida Supreme Court in support of Michael Schiavo in the case of Jeb Bush vs. Michael Schiavo.
The tragic case of Mrs. Terri Schiavo may come to closure this week: March 18 is the day scheduled by Florida Circuit Court Judge George Greer for the withdrawal of the machine that pumps a steady drip of formula into her stomach, which keeps her alive, as it has for the last 15 years.
It was 15 years ago that Mrs. Schiavo collapsed and had a cardiac arrest, which cut off the blood supply to her brain, and left her with devastating brain damage so complete that she entered a permanent coma. While she has cycles of sleeping and waking up, the cognitive part of her brain has been destroyed, so she cannot hear, see, perceive and interpret ideas or emotions, or move independently. Since she cannot swallow, the only way she can be fed is with the artificial nutrition system.
This is not the first time a court order to withdraw the care has been stopped-this case is one of the most protracted, contentious cases in bioethics. Why is this case so important, in a country in which tubes for breathing, tubes for feeding, antibiotics, chemotherapy, and other life-supporting therapies are withdrawn frequently by families and doctors? It is largely because we do not agree on the ethics at the end of life.
Terri Schiavo's husband has told the courts who have looked at the case again and again over the past five years that he and his wife had discussed the issue of removing life support if either of them was in such a position and that she was clear that she would not want to live in this condition. After many years in which he tried therapy after therapy, Mr. Schiavo went to her doctors to make a plan for the withdrawal of treatment.
Normally, in most tragic cases, what would happen next is that the family would explain the patient's wishes when no cure could be found, and no treatment would alleviate the condition, explain the values that motivate the choice to stop medical treatment and the care is withdrawn.
But Mrs. Schiavo's parents disagree. They want their daughter to be kept on the tube feedings that keep her alive. They believe that she is getting better, and they do not believe the testimony of the doctors that have examined and treated her that says she cannot ever become conscious, nor do they believe she told her husband she would want the treatment to be stopped if she were in this state.
Over the past 30 years in medicine, a way to cope with the hard choices at the end of life has emerged. We allow patients to make their own choices about their bodies and their death. When they cannot speak for themselves, we trust that the people that love them will act as good surrogates for their wishes and basic values.
We urge everyone to think about these hard choices and to leave their wishes in writing with their family and doctor-even young people, as in Terri Schiavo's case. When nothing is left in writing, we turn to spouses, children, and other family members. This structure allows the widest degree of choice for families in a terrible dilemma-and we promise, in our law and policy, that the choice is theirs, based in many cases, on personal ideas about faith, death, afterlife, or other values. We do not allow the state, or the church, or doctors to unilaterally treat some and not others, or to intervene in family-based decisions about medical care.
It is for that reason the courts and most bioethicists can support Mr. Schiavo's request that his wife's wishes be honored. To allow treatment decisions to be taken out of patients' and families' hands would set a disturbing precedent-Who then would decide in each case? Whose faith tradition would be respected? Whose view of disability?
Yet the grief and faith of her parents is so apparent and so vivid, one can hardly turn away. Any person of faith, any parent has empathy for their pain and sorrow. To support treatment withdrawal is not to deny their agony. But upon careful reflection, the question is who best speaks for Mrs. Schiavo's wishes, and every court that has access to all the facts has decided this.
The idea of nutrition has special resonance in many religious traditions. Yet the U.S. Supreme Court, and many other appellate courts are clear-feeding tubes are like any other sort of medical machine. Terri Schiavo's family must reflect and interpret their Christian beliefs in the way they chose, and deserve the ability to enact their decisions.
There is one way to make some meaning from this tragic case-that every person in every faith community can do today-really today. Think about what you would wish to do if you were every in Mrs. Schiavo's condition. Write your wishes down and make a copy for your family. Talk to them about it, talk to your clergy-person about your wishes. If you are moved by the tragedy of the Schiavo case, having this conversation in every home in America-what ever you decide-will be the true legacy of Terri Schiavo.