New Questions on Long-Term Care

Conservatives and Liberals tend to have different ideas about the sphere within which individuals ought to be allowed free rein for their discretion. Liberals believe that young teenage girls have the moral insight and experience as well as the right to decide to undergo abortions without parental notification. At the same time, they hold that adults are incapable of managing a portion of their social security payments in private retirement accounts. The decisions of teenage girls on an issue of intense moral significance are sacrosanct, while adults require government supervision to manage their retirement.

On the other hand, Conservatives are eager to extend freedom by lowering tax rates and allowing taxpayers to keep more of their own money. The Conservative intuition holds that control of personal resources broadens the scope of personal discretion and thus freedom. But, woe to anyone who wishes to spend their money on recreational drugs.

Even the Libertarian position has its problems. Liberations claim to want to maximize freedom of choice and believe drug use ought to be a matter of personal choice. However, if abused, recreational drug use certainly curtails the freedom of the user. It is an open question as to which policy concerning drug use effectively maximizes freedom

The Terry Schiavo case also raises interesting and important questions about the extent and limits of personal sovereignty. There appear to be two questions that are at issue here. The issues are separate but abrade against one another. The first question is: What level of treatment would Ms. Schiavo have wanted? In the absence, of clear documentation of her preferences, who should decide on her behalf? At this point, her husband and her parents are at odds as to Ms. Schiavo’s wishes and the law gives the spouse presumptive guardians status. The second issue is the determination of the mental status of Ms. Schiavo. Is she in “permanent vegetative state” with no consciousness and no realistic prospects of consciousness returning? Is she is a semi-conscious state with some awareness of her surroundings and some ability to interact?

Let us lay aside for a moment the particulars of this case and ask more general questions about the limits of personal sovereignty and autonomy? Do we wish to grant people personal sovereignty in all cases? When we are not considering palliative care in the terminal stage of life, but long term care, do we expect others to grant all our wishes with respect to care? Christopher Reeve, the actor made famous in the Superman movies who was paralyzed in an accident, required medical care to stay alive, but lived many years before his final illness. He could not feed himself or take care of other needs, but was perfectly conscious and aware. If he asked that his medical care be stopped because he did not want to accept the quality of life afforded a quadriplegic, would we be obliged to honor and assist in this request? Ought we refuse and thereby limit his personal discretion? Can the state step in and prevent assisted suicide by someone who decided that he does not like the quality of his life? Is a person’s life and existence entirely his own, or do we all have an important interest in everyone else’s life?

If a person is in a persistent vegetative state, if he has no conscious, should that person be considered dead? While we would all concede the necessity to exercise extreme caution in coming to this diagnosis and the necessity to resolve any doubt by presumptively asserting that there is latent consciousness, it is possible to conceive of situation where all are morally certain that there is no “there” there. In such a case, is there any obligation to maintain life even if that person had earlier requested such extraordinary treatment? Are we obliged to honor the wishes of someone who would have directed us to maintain their bodily functions, even after brain death?

Much has been made as to what Terry Schiavo would have wanted. However, few are asking broader questions that have escaped noticed as people have argued about the facts of this case. Do individuals have the right to refuse long-term care because of quality of life issues? Do individuals have the right to ask that life sustaining care be continued after a careful diagnosis of brain death? With ever more capable and expensive medical care and with the Baby Boom generation entering the last third of third lives, these questions are sure to be asked more and more frequently.

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