A Tragedy Compounded

New England Journal of Medicine editorial on the Terry Schiavo case by Dr. Timothy Quill, in .pdf format. As Quill points out,the medical facts are incontrovertible. The deprivation of oxygen to her brain after a 1990 cardiac arrest caused by complications of her eating disorder has left Terry Schiavo in a persistent vegetative state, in which,

“…during the subsequent months, she exhibited no evidence of higher cortical function. Computed tomographic scans of her brain eventually showed severe atrophy of her cerebral hemispheres, and her electroencephalograms have been flat, indicating no functional activity of the cerebral cortex. Her neurologic examinations have been indicative of a persistent vegetative state, which includes periods of wakefulness alternating with sleep, some reflexive responses to light and noise, and some basic gag and swallowing responses, but no signs of emotion, willful activity, or cognition. There is no evidence that Ms. Schiavo is suffering, since the usual definition of this term requires conscious awareness that is impossible in the absence of cortical activity. There have been only a few reported cases in which minimal cognitive and motor functions were restored three months or more after the diagnosis of a persistent vegetative state due to hypoxic-ischemic encephalopathy; in none of these cases was there the sort of objective evidence of severe cortical damage that is present in this case, nor was the period of disability so long.”

Schiavo’s parents’ objections to terminating life support seem to be dually based. Against the consensus of all relevant medical parties, they sentimentally refuse to accept the diagnosis of persistent vegetative state which, after fifteen years, is irrefutably irreversible. But that they appear not to understand or accept this is understandable; Dr Quill says he is not surprised that some might interpret her “apparent alertness and movement as meaningful”. But, at every stage in the subsequent morass of legal proceedings, courts have ruled that, by the standard of “clear and convincing” evidence, the diagnosis of persistent vegetative state is warranted.

But this is not just a difference of opinion on diagnosis or prognosis. The Schindlers also have attempted to subvert the central legal and ethical principle by which decisions about terminating life support must be made when the patient herself is incapable of expressing a preference and has not left any advance directives. This is the so-called standard of substituted judgment. The family member with decision-making authority is obligated to make not the decision that is best for the family or the one that they want for their loved one but the one, as best can be inferred, that the patient would want for herself. As Dr. Quill describes it,

“If the patient could wake up for 15 minutes and understand his or her condition fully, and then had to return to it, what would he or she tell you to do? If the data about the patient’s wishes are not clear, then in the absence of public policy or family consensus, we should err on the side of continued treatment even in cases of a persistent vegetative state in which there is no hope of recovery.”

I myself think the principle of substituted judgment is normally honored more in the breach than in the observance. However, this is frequently not a problem when the interests of the decision-making party and of the patient are essentually congruent and there is no substantial dissent from other stakeholders. Only in such a rancorous case as Schiavo’s must the courts become involved. And here they have; and have ruled that the evidence Michael Schiavo has presented about his wife’s own preferences meets the standards, and makes prolongation of life both “unethical and illegal.” Dr. Quill concludes by hoping that Schiavo’s case reinvigorates our determination to put aside distractions and self-interests that interfere with this purified focus on what the patient wishes. It probably bears mentioning again, as Dr. Quill does, that Schiavo is not suffering with the withdrawal of feeding, as she no longer has the mental activity to experience distress. Dying in this way can be a “humane, natural process (humans died in this way for thousands of years before the advent of feeding tubes).”

But this case is more than just a challenge to us to rededicate ourselves to upholding the ethical and legal principle of substituted judgment. The tragedy is more compounded than Dr. Quill’s editorial conclusions would suggest. As I have written before, part of the problem is the limited definition of death to which we cling as a society. Despite lip service to the concept of ‘brain death’, our commonsense notion of death requires the cessation of all biological activity. As a resident early in my career I had a macabre moonlighting job in which I was called in to a nursing home to pronounce death; it is the doctor’s task in ‘pronouncing’ to be sure there is no heartbeat, respiration etc. But, especially with the rapid growth in sophisticated neurological tools and tests for assessment of brain activity, this is an increasingly inadequate notion of death. The Schindlers’ objections at every stage that she might recover, and her supporters’ talk about Michael Schiavo and the medical establishment ‘killing’ her, certainly makes sense if one thinks she is still alive and the withdrawal of life support is shortening her life. But, conceptually, she might better be thought of as no longer alive. It is just that the process of her dying has so far been measured in decades instead of the more usual span of moments, and all that we are doing is needlessly prolonging her dying further, prolonging the meaningless heartbeat in an assemblage of organs, tissues, protoplasm … not in a person. I find the lack of recognition of this distinction troubling and not just a little pitiful.