Politics & Policy

Pvs and The End of Life

Congress again prepares to weigh in.

As death nears for a daughter well into her eleventh day (and beyond her 250th hour) of court-sanctioned starvation and dehydration, Terri Schiavo’s parents have nearly abandoned their battle to have public officials–federal, state, or local; judicial, legislative, or executive–vindicate their daughter’s basic right to life.

It has been wrenching to watch as door after door was slammed on them. It has been breathtaking to witness capital-punishment opponents–who, in the name of making certain the wrong person is not executed, would move heaven and earth to impose DNA testing for the benefit of death-row murderers long exhausted of their multiple state and federal reviews–sit on their hands as an innocent woman was effectively executed on the basis of appallingly thin factual findings made on a civil standard of proof without independent counsel or a jury trial.

And now the final, excruciating indignity awaits. Once Terri dies–whether it is today, tomorrow, or within the next few days–the system that betrayed her in life will again abandon her in death. On current plan, there will be no autopsy or inquest. Terri’s parents will not be permitted religious rites and an interment–the catharsis that might give them some peace for the daughter to whom they have been singularly faithful. Instead, they will be forced to watch yet again as Terri’s nominal husband Michael Schiavo–engaged to another woman for years while Terri withered, with whom he has children–is permitted to whisk the corpse away for a quick cremation in Pennsylvania, leaving doubts forever to linger.

Against that mind-boggling background, the U.S. Congress–which proved ineffectual in getting its courts to deign to give the facts of Terri’s case a fraction of the attention those courts would unilaterally have demanded be given the plight of a detained al Qaeda terrorist–will now apparently take up the issue of so-called “end-of-life” decisions. This time, appropriately, the examination will not be in haste. Yet, while we can hope Congress will take note of the painful Schiavo facts, it would be a mistake to make Terri’s case the model for reform.

It is not for nothing that we say bad cases make bad law. We have no reason to believe Terri’s situation is more a paradigm than an aberration. For most husbands in Michael Schiavo’s shoes–anxious to get on with new lives and aware that a stricken wife’s family was willing and able to take on the burdens of care–we can reasonably hope that ending the wife’s life would not become an obsession. Most men or women in Michael’s circumstances would step aside. Many, if they’d entangled themselves in new relationships, would avail themselves of the ready legal framework for ending the marriage. Most spouses would not suddenly remember, seven years after the fact, that their partners had evinced a carefully considered wish to die rather than be sustained if they were ever to become incapacitated.

Father Rob Johansen, in his important article in NRO about the critical diagnosis that Terri is in a irreversible, persistent vegetative state (PVS), described how dumbfounded Dr. Peter Morin, an academic neurologist who studies degenerative brain diseases, had become upon hearing that the PVS diagnosis in this case had been made without the benefit of rudimentary tests, such as functional magnetic resonance imaging or a positron emission tomography scan. “That’s criminal,” Morin said.

We can take some comfort, one hopes, that this stunned reaction is reflective of a reality that, in a decided majority of cases, the PVS finding, which–we all now know–may predicate a state-sanctioned inducement of death, is not made absent such basic testing. We can further hope that a diagnosis that ought to require extensive clinical observation is not ordinarily made in even partial reliance on a scant 45-minute examination by a neurologist like Dr. Ronald Cranford, the expert relied on in Terri’s case, who doubles as a euthanasia and assisted-suicide activist, and who has written that he believes Alzheimer’s patients should be starved.

So, with the Schiavo case pushing end-of-life questions to the forefront but not necessarily as an accurate model for how they recur, what should Congress do?

To begin with, I seriously doubt Michael Schiavo is the type of spouse one normally encounters, so it would be a mistake to use him as justification for fiddling with the presumption that a spouse should be the one making these decisions. One could easily imagine an equally bad situation occurring in a family that had a loving, dedicated husband and parents of suspect motivations. Guardianship, moreover, is a state matter and we should resist dictating a federal solution to it. The fact that a state process produces a bad result is not a justification for casting federalism aside where there are not higher federal interests. As we know, the federal system is fully capable of producing dreadful results as well.

Questions about the process by which life can be taken by state action are federal in nature because they implicate the Fifth and 14th Amendment right not to be deprived of life absent due process of law. In this area, there is much Congress can usefully do.

To begin with, Congress should seize the moment to educate Americans, and themselves, on PVS. The Supreme Court, in its 1990 Cruzan v. Director decision, held that an individual has a right, in certain dire instances, to insist on the life-ending withdrawal of nutrition. But the court qualified that a surrogate does not have the same latitude of decision-making authority when the individual has been reduced to a PVS, and that the state does have a strong interest in making certain the surrogate’s exercise conforms to an incapacitated person’s actual wishes. Cruzan, furthermore, speaks only fleetingly to what PVS is, and even less on the difficulties of diagnosing it. Johansen reports that these difficulties are daunting and that, according to a 1996 study conducted at England’s Royal Hospital for Neurodisability, the error rate for the diagnosis may be as high as 43 percent. The study, obviously, is nearly a decade old, but if it is sound, that means nearly one in two diagnoses is wrong.

It should go without saying that courts shouldn’t be permitting people who are not in a PVS to be killed. As the first order of business, Congress should hold hearings, with experts from all sides, so that the American people can get a handle on what exactly PVS is, what is required before it can confidently be diagnosed, and whether our knowledge and technology are really sufficient to make a PVS diagnosis a worthy predicate for life-ending measures. If the diagnosis that is possible under current science is less reliable than the high level of proof we demand before a person may be executed for a capital murder, we should not be permitting a human being’s death to be triggered by a PVS finding.

The method of inducing death also merits legislative inquiry. The effects of starvation and hydration on a PVS patient, and on a minimally conscious person mistakenly diagnosed as PVS, certainly call for more scrutiny from our busy Congress than the comparatively frivolous question of whether steroids have caused a spike in home-run statistics–the burning issue to which a House committee recently devoted a full day’s high-profile hearing. If we are causing pain, we should stop. If we are causing pain, we should ask ourselves, again, what that tells us about PVS.

Assuming for argument’s sake that Congress does conclude PVS may be an appropriate circumstance for ending life, the next question is: Under what conditions?

The two crucial ones have been identified: (a) Is the person actually in a PVS, and (b) has the person actually indicated, in an informed way, what his or her desires would be? In the public debate over the Schiavo case, getting a fix on the second question has been especially challenging because of our tendency toward transference. Many of us, probably most of us, look at Terri and say, “I would never want to be in that condition”–which is understandable although not terribly meaningful given that we don’t really know what her condition is (or at least what it was before her sustenance was removed). It is natural for people to view the case that way. What else, after all, do we have to go on at a gut level besides our own experience and intuition? But it is all quite beside the point.

In the PVS context, we are talking about a person’s own right to life. It doesn’t matter what we, individually or collectively, would want for ourselves. What matters is what, if anything, that person subjectively wanted–even if it doesn’t track our predilections. What matters is whether that person has considered and communicated those desires in an informed and reliable way. If she has, and PVS turns out both to be an appropriate basis to end life and actually to exist in the case at hand, we should not interfere in that choice if the state has made it available through surrogate action. If she hasn’t, we should be erring on the side of life, lest we inevitably venture further down this slope into even more ethically dubious takings of life.

As I have argued here, before the state may permit the termination of life in a PVS case, the guardian should be required to establish beyond a reasonable doubt that the stricken person is in a PVS and that the stricken person evinced, in a knowing and intelligent way, a desire to be removed from sustenance if ever in a hopeless, incapacitated state. On the latter finding, we should encourage living wills to induce a person who considers and feels strongly about this choice to make her intentions clear. In the absence of such a living will, there should be a presumption that the person wants to live. It is life, not death, that our constitution protects.

There is a good argument that this should not merely be a presumption but a conclusion. On balance, however, I think we need to make reasonable allowances here, out of respect for the individual’s self-determination, out of the desire to minimize government intrusion into painful family matters, and out of the recognition that it would be unduly haughty to think ourselves capable of fashioning an unbending rule that will do justice in all conceivable situations–because we simply can’t conceive of all the situations that might arise in this area.

I would thus suggest a presumption that could only be overcome by proof beyond a reasonable doubt that the person expressed her desires in a way we can find reliable, notwithstanding the lack of written instructions. In a case that did not meet that burdensome standard, the presumption would decide the case in favor of life.

No legal regime, of course, will ever quell the heartache inherent in these horrendous cases. Nevertheless, carefully constructing one would ensure that we have responsibly thought the hard issues through as a democratic society.

Andrew C. McCarthy, who led the 1995 terrorism prosecution against Sheik Omar Abdel Rahman and eleven others, is a senior fellow at the Foundation for the Defense of Democracies.

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