I pity Terri Schiavo, though she is blissfully unaware of the storm around her, and apparently has been for 15 years now. However, could she witness her poor damaged self being abused for personal, political, religious and all other possible purposes, she would surely be crying out. I pity her husband, reviled by professional revilers, (the "dream team" of character assassins) trying his humble husbandly best to honor the wishes of his destroyed wife, asserting these rights against parents who are distraught, and living in a dream world of wishful thinking and regrets unspoken. Their unrealistic wishes are of course fed by multiple streams of politically and religiously motivated blather. And so they posture, and beg and plead to anyone who will listen, and continue the physical torture of their destroyed daughter. So I pity the parents, as well. The real trouble is that these little dramas get played out every day all over America, with families most often agreeing on a proper course of action, in conjunction with their doctors. These situations result in removal of feeding tubes every day, and all without recourse to courts and media and talk radio hypsters. Controversies within families get talked out, and the wishes of the actual sufferer, when known, by and large are honored, even over the objections of family members. And this provokes almost no controversy anymore, it is so well accepted and so routine, and so much in control of the actual people involved. Terri's mistake, and don't you make the same one, was to fail to record her wishes in writing. Had she done that, no amount of pleading from her parents or anyone else would have over-ridden her express wish. No one could have or would have been able to generate this storm of inappropriate attention and legal maneuvering. The question is complex, and yet it is dead simple. The Patient has the right to control her care. She has expressed her wishes to her husband, and seven plus years of litigation have established this by clear and convincing evidence. Sadly, she did not record these in a living will, or better yet, appoint a durable power of attorney for health care. But her wishes are memorialized now after all the trial proceedings have established these as the facts. Appeals Courts, including Supreme Court, do nothing to change the facts as established by the fact finders. They may address errors of law by lower courts, or declare existing law unconstitutional, but they will not find such errors and will not invalidate existing law. This has been a decided matter for a long time, and the courts will not disturb that, absent evidence of major error or discrimination on the part of the lower courts. And this was not the lone decision of a liberal judge, but a 10-2 decision of the entire Appellate Circuit, and in a conservative Circuit. It is a good thing that it is judges and not elected politicians who are finally in charge. They need not pander, and have some sense of decorum left. Were that even possible in this pathetic circus.
As these fights between family members over incompetent, disabled loved ones develop initially, I have found that there is usually serious guilt and regret driving the combatants. Often the most vociferous advocate for "doing everything" is the person in the past who has been the most estranged, or who has literally been the most abusive. When "Mom" lapses into the final coma, it is generally the wildest child, the one with the legal problems (and a phone and a lawyer) who tries to control everything, even over the express wishes of the Mom. The family discussion can only be helpful when it focuses on the desires of the patient, and purposely contrasts these wishes with the multiple conflicts we all have under the circumstances. In counseling these people, it is necessary to make them take the role of speaking for the patient, even when they would choose differently. It is necessary to make them understand they are not choosing life or death, they are not choosing anything. Mom has already chosen, and they need to represent that choice honestly to the caregivers. They are speaking from their intimate family knowledge and understanding of what Mom would have wanted, even if they disagree, and they are maturely and humanely representing to the world what she would have said, as hard as that might be. No one else has that knowledge. No one else is as intimately concerned. No one else has the family member's interests and dignity so near to their hearts. It is necessary for everyone else to butt out, keep their opinions entirely to themselves, and allow the representation to occur. Doctors who impose their values are not helping. Chaplains and clergy who impose their values are not helping. Politicians and lawyers who impose their values are worse. This is a family matter, a private matter of greatest pain and gravity and emotion, a matter of the most profound meaning and dignity, a matter which goes to the core of being a free individual. That this family is in pain is obvious. That their pain is played out in the media and the courts is a shame, a violation of Terri and her whole family, husband and parents included. Perhaps we will have one good result, after all is said and done. Perhaps we will stop putting off doing our living wills. Perhaps we will have this discussion at home with our families, and express our fears and concerns to them, so that they will support whatever choice we make for ourselves. Perhaps we as a country will reaffirm the notion that each individual should have the right to control his or her own body, and defeat attempts to make laws which take that right away. Perhaps we will remember Terri Schiavo as the woman who sparked this discussion nationally. I am sure she never aspired to being the living will poster girl, but out of her ordeal may come some good that even she could smile about. Farewell Terri.
