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