Uncomfortable truths about Terri Schiavo

An autopsy has confirmed that Terri Shiavo did have massive brain damage. She was probably blind and unaware and could not eat or drink. But what does this prove?

"The worst and most corrupting of lies are problems wrongly stated," remarked the French novelist Bernanos. I thought of that statement last week when reading the New York Times front-page article on the autopsy report showing that Terri Schiavo did indeed have irreversible brain damage. Those who were unhappy with Congressional intervention into the Schiavo case took comfort from the autopsy results. But evidently no minds were changed on that tragic case. What bioethicists should do now, I believe, is not to take comfort but to become even more uncomfortable about the Schiavo case. Here are a few uncomfortable truths:

Forget living wills. The Times article notes that public interest in Living Wills has grown dramatically. Many ethicists are encouraging this but they're wrong. Everyone wants to avoid ending up like Terri Schiavo, but empirical research shows that living wills won't do the job: an uncomfortable truth that we should accept instead of promoting false hope.  

Durable power won't do it either. Well, then, what about that other form of advance directive, a designated proxy decision-maker? True, it's a better idea than a Living Will, but a formal surrogate wouldn't have prevented Schiavo's fate. Terri Schiavo would very likely have appointed her husband, Michael, who was the default proxy choice anyway. The parents would have objected to his decision and we would have ended up in court anyway.

It isn't terminal illness. Terri Schiavo didn't have a terminal illness (although, ironically, she died in a hospice). But most of our discourse about end-of-life choices is focused on terminal conditions. What about when people can live for years in less-than-optimal conditions? What about dementia or impairment by strokes? It's not surprising that groups representing the disabled got involved in this case. Uncomfortable questions, indeed.

Mystery, not certainty. It's uncomfortable to admit, but medical science doesn't always come up with answers to basic questions, such as why we're sick.  Even after the autopsy report, no one has the faintest idea what caused Terri Schiavo's condition in the first place. Those of us who have been through the death of a loved one will recognize this uncomfortable situation. It's hard to admit but science doesn't always ride to the rescue with explanations, let alone solutions.

Conflict of interest. Liberal defenders of proxy decision-making were unhappy with attacks on Michael Schiavo's character. But we needn't attack someone's character to recognize that conflict-of-interest is a real problem. It would be impossible for Michael Schiavo, with his other common-law-wife, not to have had a conflict of interest in this case. Unfortunately, the same conflicts occur routinely among caregivers for older people, such as caregivers who are burdened by guilt or who stand to inherit money. That doesn't mean attacking someone's character or motives. But it does mean acknowledging uncomfortable truths, such as that proxy decision-makers will often have conflicts of interest.

The bottom line? Face up to what philosopher Miguel Unamuno called "the tragic sense of life." But the tragic sense doesn't mean paralysis in the face of hard choices. Yet it might mean questioning the dominant autonomy model and the prevailing methods of procedural bioethics. It certainly means getting rid of the false hope that right methods will avoid tragic outcomes. A more persuasive alternative might be mediation or negotiation.

Dr Harry R. Moody is a Senior Associate with the International Longevity Center, USA, in New York.