The Terry Schiavo Tragedy

Posted on April 8th, 2005 in Commentary,Health and Fitness by EngineerBoy

Terry Schiavo passed away recently, 13 days after having her feeding tube removed. Depending on who you ask, one of the following is true:

Terry Schiavo has been in a persistent vegetative state for over a decade, and prior to her demise she expressed (on multiple occasions) her wish to never be kept alive as a vegetable.

-or-

Terry Schiavo has been suffering from an untreated bout of reduced consciousness that could have been treated if only her husband would have spent her settlement money on it.

However, if you track the timeline of this case and include the relevant public information, one thing becomes clear, and that is that nothing about this case is clear. As far as I can tell from the public record, every single doctor that has directly examined Terry Schiavo, including dispassionate, court-appointed doctors, have confirmed the medical diagnosis of persistent vegetative state. However, a handful of other doctors, some also dispassionate, have said the exact opposite, or at least indicated that her condition should be re-evaluated before a final diagnosis is made, basing their conclusions on the available medical records and videotapes.

Ah, Those Videotapes…

Family members have reported that Terry Schiavo responds to them, smiles, tracks movements with her eyes, and even tried to speak when her feeding tube was removed. The news networks have shown (ad infinitum) the same 2-3 minutes of videotape showing Terry’s mother kissing her and holding balloons in front of her, and Terry smiling and tracking the balloons with her eyes. When I first saw that videotape I was stunned that anyone could think she was vegetative. However, if you look deeper at all the available video evidence, what you find is that even though her parents have had decades to videotape her and show her being aware and interacting, that one video clip is the only one I can find in the public record. However, there are also significant other medical videotapes of her examinations, showing her making the same faces and eye movements, but not in response to any of the stimuli in the area.

Many of the talking head doctors on the news, as well as those that have examined Terry Schiavo, have stated that her smiling, head movements, and eye movements are simply involuntary reflexive reactions and are not based on external stimuli. There are videotapes (which have been shown on the news, but only rarely, as they are not “controversial”) showing doctors clapping in her ears, talking to her, stroking her cheeks, shining lights, moving colored objects, etc, while all the while Terry Schiavo sat there making smiles and grimaces and head movements, but not related to any of the attempts to get her attention. They appeared random. In fact, in the context where they movements were not related directly to anything, they appeared to be a bit spastic. Which is exactly what one would expect from someone in a persistent vegetative state.

So, the Inescapable Conclusion Is…

Based on all of this, one can conclude without one shred of doubt that none of us in the general public is in any position whatsoever to proclaim that we “know” that Terry Schiavo’s circumstance was handled in the “right” way or the “wrong” way. Oh, we can all very easily project our own preconceptions and dogma onto her plight. We can all relate to her horrific circumstance and simply “know” that she would want what we would want. I mean, what rational person would want:

To be kept artificially alive in a vegetative state, left to slowly wither and die, with virtually no hope of recovery.

– or –

To be murdered by an activist judicial system and cold-hearted “husband”, who presume to play God with the most precious gift of all…life.

One would have to be crazy to want that, wouldn’t they?

My Opinions Are…

I, like most everyone, have definite opinions about this case. One thing that I strive to do, however, is never to proclaim my opinions as facts or my beliefs as truths. Here are my beliefs and opinions regarding the Terry Schiavo issue:

  • I believe that Terry Schiavo was in a persistent vegetative state.
  • I don’t believe that Terry Schiavo ever clearly indicated her wishes regarding life support in such a situation.
  • I believe that Congress and the President acted extraordinarily irresponsibly in passing emergency legislation intended to impact this already-decided case.
  • I believe that every activist, public figure, and politician, on both sides, who inserted themselves into this fight and politicized it with their own agenda is a scumbag.
  • I don’t believe that anyone involved in this issue acted purely out of the desire to do right for Terry Schiavo, and I believe that both her parents and her husband in large part acted out of greed, spite, and their own agendas (or the agendas of the opportunistic snakes they allowed into their inner circle).
  • I believe it would have been appropriate to have one more round of brain-function tests before the final decision was made, but think they would only have shown that her official diagnosis was correct.
  • I believe that the right thing to do in this case was to stop prolonging the life of Terry Schiavo’s body.
  • I don’t believe that starvation and dehydration are a compassionate way to end the life of a terminal patient, and I believe that we should strive to find a more merciful way to allow people to die with dignity.
  • In my opinion, Michael Schiavo should have given Terry Schiavo’s body to her parents for the final arrangements.
  • In my opinion, the Schindlers (Terry’s parents) went too far in turning the tragedy of their daughter’s condition into a three ring circus.
  • In my opinion, anyone who claims to know the right way to have handled this situation is an idiot.
  • In my opinion, our adversarial-based court systems are not the correct forum to decide issues such as these — we should move towards a system of medical panels or committees charged with the responsibility and authority to make these judgments, and we should remove lawyers and legal shenanigans from such a life-and-death matter.
  • In my opinion, the only absolute good that will come out of this tragedy is a heightened awareness of this issue which will cause more people to clearly state their wishes if they are ever in a similar position.

My Final Wishes

I also think that if I were in a similar situation, I would not want my life prolonged in such a way. That is not an unequivocal statement, because this is a difficult issue and there are a lot of grey areas, even when it’s just me contemplating my own fate. I think that if I had a flat EEG I’d prefer to be allowed to die. I think that if I were in a coma, but with significant brain activity I’d prefer to be kept alive. If my condition was questionable, or didn’t quite match any of my predetermined wishes, I would prefer a panel of non-dogmatic, dispassionate medical experts to review my case. Ultimately, the basis for my personal wishes would be to be kept alive if there were a chance of recovery of consciousness and of the ability to think in abstractions and have a sense of humor. Also, by “chance of recovery” I mean not only based on the medical capabilities at the instant I am being evaluated, but also in light of potential treatments or breakthroughs that have a non-trivial chance of applying to my condition in the foreseeable future.

So, there you have it, as clearly as I can state it, my final wishes. I have agonized over how to express those wishes. I understand that the above paragraph does not clearly state what to do in all circumstances. As I wrote it I came to the realization that it would be virtually impossible for me to create an end-of-life decision matrix that I would be comfortable with. I don’t want my life prolonged if I can’t (and can never again) enjoy it. However, I don’t want my life ended too early if there is any chance that I can fight my way out of it, or that the medical community might one day soon be able to fix whatever is wrong with me. In fact, I’ve come to the conclusion that the only way I could be absolutely sure that my exact final wishes are carried out would be to somehow be available to review the facts of my own case at the time when it would be impossible for me to do so.

And so in the final analysis I find that it is difficult or impossible for me to leave a precise enough definition of my own wishes to handle all the possible medical eventualities that might befall me. And I am of sound mind and body, and I have thought deeply about it. I believe that this would be true for many, if not most, people. If one contemplates the complexities of actually putting one’s final wishes down in unequivocal words (to be used for you or against you after you have lost the ability to evaluate your own condition and express your wishes), one may find that this is a difficult or impossible task.

And if it is that difficult to codify one’s own wishes, how is it that so many of us seem to think we know what Terry Schiavo would have wanted, or what would have been best for her? In the text above I have expressed my opinions about her condition. However, I do not claim that I know best, and I certainly don’t claim that those who disagree with me are wrong simply because they disagree with me. I am ecstatic that I did not have to decide her fate, as that was a thankless task and a lose-lose proposition, and the decision-makers will never know if they decided correctly. They will never truly know what it was like inside the mind (if it existed) of Terry Schiavo during her last days. They will (rightly) always have doubt about their decision, as this case is the very definition of a judgment call.

And those of us (myself included) who watch from the wings and judge the judges and the husband and the parents should all be ashamed of ourselves, as we truly are in no position to judge. What we should all be doing is taking the tragedy of Terry Schiavo’s life and death and using it for the betterment of us all, as her case pointed out the terrible flaws and gaps in the way our medical and judicial systems handle issues involving the life and death of people who are unable to express their own wishes. In her case the system worked as best it could, but the vast grey areas left too much room for debate and dogmatism. The legacy of Terry Schiavo should be that her case was the catalyst in forcing America to face this hard issue and make the tough decisions necessary to prevent this type of media-circus, feeding-frenzy, bully-pulpit, snake-oil situation from ever occurring again.

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