CBHD: The Schiavo Controversy: First Things First

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	John F. Kilner, Ph.D., is Senior Scholar for The Center for Bioethics & Human Dignity in Deerfield, Illinois.
	Post Date: March 24, 2005

Update: I am saddened at the death of Terri Schiavo -- sad for her and her loved ones, that they have been parted; sad for this nation, that we did not provide Terri with the latest diagnostic tests and a guardian free from major conflicts of interest to represent her best interests.

Going forward, we must resist the temptation to devalue and fail to protect people whose quality of life appears to be very low. All of us are at risk when any one of us is left unprotected in such circumstances.

Knowledge and understanding of the patient’s medical situation and the patient’s wishes are central to good medical decision-making. Making decisions regarding the patient’s health care without gathering the best available medical information, or giving responsibility for assessing the patient’s wishes to someone who is not appropriate to the task, normally would be widely decried. Strangely, that is not the case in the Terri Schiavo controversy.

The medical situation. A broad array of medical experts have lined up on both sides of the question as to whether or not Terri Schiavo is in a persistent vegetative state (PVS) and therefore whether or not any medical interventions have the possibility of improving her medical situation. Some say she is in a PVS that no therapy can alter. Others say she is in a minimally conscious state (MCS) in which various therapeutic interventions have great prospects for making a difference. As recently as today, neurologists from leading medical institutions have been cited in national news stories offering conflicting views regarding Terri and PVS.

Newer tests such as functional magnetic resonance imaging (fMRI)—which have only become available since Terri’s original diagnosis was made—can provide more information on patients such as Terri. Yet no one has been allowed to run such tests for quite some time. Without such tests, it is hard to be sufficiently confident about what interventions should be attempted or how much of life Terri is capable of experiencing. Instead of engaging in a duel of predictions about what an fMRI would or would not show about her current condition, the wisest course is to perform the test and try any further interventions that are indicated. The best decisions require the best information. In light of the fact that funds were placed in a trust fund for the express purpose of gathering such information, there has been no financial obstacle to pursuing all relevant avenues. More recently, additional sources of funding have also become available.

As it is now, people are left guessing. It is no wonder that the Florida Senate has divided 21-18 over intervening in this case; and the Florida Court of Appeals has divided 2-1. Decision-makers are especially vulnerable to bias and other agendas—and agreement is less likely—when people do not have all of the information concerning the medical situation.

The patient’s wishes. Terri never wrote down her wishes. In such a situation we must rely on someone close to her to let us know if she ever clearly voiced an informed view of how she would like to be treated in a circumstance such as her present one. Because of the unique, exclusive commitment of a spouse, it is normally assumed that he or she is the person in the best position to provide information regarding one’s wishes. However, if in a particular case there are unusual conflicts of interest, the spouse may not be the best person on which to rely. Another person that is more objective needs to be appointed to assess the patient’s wishes.

In the case of Terri’s spouse, the relational and financial conflicts of interest are indeed exceptionally great. Her spouse has not maintained an exclusive relational commitment to Terri. Rather, he has developed a romantic relationship with another woman and together they have produced two children. As to financial conflicts, it was only after a court awarded funds for Terri’s therapies that her spouse first mentioned her supposed desire not to stay alive in the condition in which she was living. None of this means that Terri’s spouse is necessarily biased; rather it demonstrates that he is subject to strong conflicts of interest that make him the wrong person to be entrusted with Terri’s life.

Conclusions. In light of these uncertainties and conflicts of interest, it would be much better for someone else—someone who is not subject to these relational and financial conflicts of interest—to be appointed to make the necessary judgments. Further, in order to make the best decision, that person needs information that only certain tests can provide.

Some would short-circuit this process by claiming that we can already be confident that no one, including Terri, would want to stay alive in her present condition. However, people without disabilities can too readily assume that a severely compromised life such as Terri’s is not worth living. Contradicting this assumption, 17 national disability groups have all weighed in with a legal brief in the Florida court proceedings this past year, arguing that Terri’s feeding tube should not be removed.

If Terri is allowed to die, it is essential that every effort be made to minimize her suffering. News reports today of her parched lips are disconcerting, because keeping the mouth moist is an important way to guard against the experience of dehydration being painful.

To be concerned about how Terri is being treated is not to suggest that it is never appropriate to withhold or withdraw life-sustaining treatment. It is appropriate for patients to forgo treatment when they are unavoidably close to death and treatments will add to the burden of the dying process. Even then, though, a clear understanding of a patient’s wishes is so important. We all should put our wishes regarding end-of-life treatment in writing. At the very least, we should authorize—again, in writing—the person we want to make end-of-life decisions on our behalf.

It is all too easy for some to dismiss concern for maintaining Terri’s feeding tube and life as merely a “religious matter.” Religious convictions are relevant to such issues. For example, those who take the biblically-based view that Terri is a person created in the image of God are most likely eager to respect and protect Terri’s life, for she is a person created in the image of God. They would be concerned about withholding nutrition and hydration from anyone without that person’s clearly expressed permission.

However, just because a religious person comes to this conclusion does not invalidate it any more than a person’s lack of religious sensitivities would invalidate that person’s views about situations such as Terri’s. Rather than worrying about the religious pedigree of people addressing Terri’s plight, the first order of business in the public arena should be to address more satisfactorily two central ethical issues, the medical situation and the patient’s wishes.CBHD

On Monday, March 14, Dr. Kilner was a guest on the Moody Broadcasting Network's Open Line program. In addition, he was a guest on the nationally syndicated Focus on the Family (FOTF) radio program on Tuesday, March 8. The program, hosted by FOTF founder Dr. James Dobson and joined by FOTF Bioethics Analyst and CBHD Fellow Carrie Gordon Earll, discussed the most recent developments in the life-or-death legal battle of Terri Schiavo and the related ethical dimensions of her case.

On both programs, Dr. Kilner's expressed his concerns about how society deals with cases like Terri Schiavo's, where there is uncertainty about the patient's medical condition and about her wishes concerning discontinuation of treatment. If life truly is precious, then therapies that might make a significant difference ought to be tried-particularly when funding was provided for them by a court decision as happened in this case well over a decade ago. If a patient's wishes really matter, then when there is substantial debate about what a patient would have wanted and the guardian has a conflict of interest (financial gain and a sexual relationship with another woman in this case), then a more objective guardian should be appointed to assess Terri's wishes.

The Center for Bioethics and Human Dignity is an international center located just north of Chicago, Illinois. Its mission is to develop reasoned perspectives on all of today's bioethical issues and to disseminate them to health care professionals, academia, cultural and church leaders, public policy makers, and the media in order to protect human dignity.

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The Schiavo Controversy: First Things First

by John F. Kilner