Trying to Think Humanely About Terri Schiavo — And The Rest of Us

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Trying to Think Humanely About Terri Schiavo – And The Rest of Us

 

Published in the Maryland Daily Record April 1, 2005

 

          Now that Terri Schiavo is fully dead and gone, the loud national dialogue about her will inevitably die down as well.  A softening would come as a relief.  The loudest voices all seemed to describe Terri and her husband and parents as examples of something, lines in the sand, precedents, not the individuals they were.  Even the comment ostensibly focusing on Terry and her supposed sufferings seemed not to be very tightly tethered to the reality of the remains of the woman in the bed.  More attention to the human realities of this particular situation might have been helpful.  But that should have included all of the realities.

 

          On the one hand you had the husband who had “moved on,” meaning that he was said to be in a marital type of relationship with someone other than Terri (something for which he can hardly be blamed).  He reported, credibly according to the courts, that Terri had expressed a desire not to be kept alive as she was, and he saw himself as discharging his final duty to her to allow her body to complete the process of expiring.  He obviously needed to complete the process of vacating the space Terri had once filled in his life, and to honor her wishes.  And on the other hand you had the parents, who could in the nature of things never cease to be parents the way Michael could and in reality did largely cease to be a husband.  But the parents’ insistence on viewing Terri as someone who could possibly wake up again someday, while forgivable, put them in a false position.  The fight was really over whether Terri should be maintained indefinitely in her persistent vegetative state.

 

          A Wall Street Journal editorial last week and also Journal columnist Daniel Henninger, trying to work through this dilemma intelligently, suggested that a better solution would have been transferring Terri to the custody of her parents, who could have taken the responsibility for maintaining Terri, and allowing Michael to move on.  This would have set to one side the analysis the law imposed on the courts, which was to determine what Terri had wanted when she was a creature who could experience and express wants, and to implement that desire.  Instead, it would focus on the respective needs and desires of the parties now most interested in the situation presented by Terri’s status.  This might have been an improvement over the analysis required by the law.  If the reported neurological testimony is to be believed, Terri was no longer capable of feeling any interest in the situation herself.  Nothing done to her could have caused her either frustration or suffering.  Service to her interests would have been service to a mere abstraction.  Far better, the Journal contended, to serve the interests of those who still had interests, as most often occurs when the courts are not called upon to intervene in the case of those who lack living wills and have left no other direction.

 

          But the Journal’s outlook was too constricted.  Having recognized that the interests of the sentient living should outweigh the strictly notional interests of the insensible living, this approach should not have stopped at Terri’s parents and her husband.  It should have extended to the rest of us as well.  Whatever you wish to call the process of nourishing someone in a permanent vegetative state, whether you call it keeping Terri alive or whether you call it keeping the mere shell of Terri operating, you must acknowledge that it consumes substantial resources.  Of course, given Terri’s totemic status, there would always have been financing available to underwrite the enterprise.  But that is not enough to deflect questions about whether this would have been worthwhile.

 

          We know that health resources, like all other resources, are finite.  For instance, the hospice where Terri was kept had a finite number of beds.  As long as Terri stayed there, someone else who might require hospice care to assist her with consciously-experienced death would be less likely to have a bed available.  Professional literature of the Health Resources Services Administration and of the Hospice Nurses Association strongly suggests that we currently experience a great shortage of both hospice physicians and hospice nurses.  Terri’s continued occupancy of a bed thus almost certainly made hospice care less available to others, and more costly.  (Supply and demand still play a strong though admittedly complex role in the pricing of medical services.)

 

          Each one of us burdens the environment, both the ecosphere and the economy.  It is a legitimate burden; we have a right to be here.  But that right must have some limits.  The position that every human life is so inherently valuable that any and all diversions of resources are justified to maintain it is recognized as absurd in most cultures. We in America have been a bit of an exception.  Even while we have become more accepting of death as a necessity and not an object of starkest fear, that acceptance has always had limits, perhaps because much of the time we can afford to fight protracted duels with death that are simply out of the realm of possibility elsewhere.  (Compare, for instance, the availability of the “cocktail” of HIV medications here and in sub-Saharan Africa, and compare the effects on health outcomes in the two locales.)  We tend to think, therefore, along lines that might be expressed in this way: I will agree that as a theoretical matter death is natural and that it will happen to me and all those I love at some time, but as a practical matter I will keep it from happening by never, ever acknowledging that this is the time.  And I will claim as my right any medical intervention I have the resources to buy for myself and those I love, whatever the cost, to assure that this is never the time.

 

          Such thinking is irrational.  There is a time for everything under heaven, and that includes a time to die.  And sometimes those closest to the situation, the dying and their families, will not acknowledge it.  It is perfectly appropriate to give the rest of us a say: those who will have to bear part of the cost through increased insurance premiums, through higher prices for medical services, through heightened scarcity of those services.  And if Terri’s wishes, as found by the courts, were not to be the lodestar, then not only her family but the rest of us as well should have had a say in whether Terri’s body should continue to graze on the limited commons of available medical intervention.  No man is an island, as John Donne wrote, and there are no completely private decisions.  And if Terri’s parents were, however forgivably within the norms of our culture, being irrational, then the views of the greater society should have had the right and the power to trump that irrationality.

 

          Something like that may have been what really happened.  When the politicians rushed to take away from the Florida courts the power to determine this matter, and that political act failed, there was no sequel.  The politicians read the polls, and saw that they lacked a mandate.  Our human reality was, we as a nation were ready to let go of Terri.  We are wronged and underestimated if this be deemed callous disregard.  It was not.  We often do not care enough, but the nation was fully engaged in this discussion.  The consensus simply was that the claim of those who would have kept Terri’s remaining biological processes going was not valid, that too little remained of Terri to preserve at such enormous effort and cost, even if those who loved her wished to do it.

 

          A predictable response to any admission of a cost-benefit analysis in decisions whether to preserve life is the waving a bloody shirt: the specter of euthanasia being imposed upon the deviant, the disabled, and the poor, upon those who could not afford lawyers like those retained by Terri’s parents.  Obviously, were we ever to abandon the standard of what the person involved would or did wish, we would need to guard against venturing too far down a slippery slope of disregard for the value of human life and human autonomy.  But, given our nation’s political norms, it would seem totally unrealistic to fear greatly that we would venture far.  We all have value, and our society’s laws reflect a strong sensitivity toward that value.  The likelihood that we would forget this is greatly exaggerated.

 

          Another exaggeration is treating death as unacceptable in all circumstances.  To most religious believers, death is the gateway to a far better existence.  And even to those who regard it as the end of existence, it is inevitable; all the headway that can be made against death amounts to postponement.  The value of what is gained by postponement should factor into decisions to expend the resources necessary to make postponement happen.  And the factoring must be done by someone.  It is not inhuman or inhumane to recognize this.

 

          Those who mourn Terri’s passing deserve our heartfelt sympathy.  But it is good that they did not prevail.  Either way, either under the law as it now is or under a hypothetical law that took the feelings and interests of the living more into account, letting her finish her death was the right thing to do.

 

Copyright (c) Jack L. B. Gohn

 

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