Joan Didion on the Schiavo case

In the June 9 issue of the New York Review of Books, Joan Didion has a wide-ranging 8000-word essay of the details of Terri Schiavo's life and death. As familiar as I am with the controversy, it was still eye-opening to see all the key issues, medical details, and turning points outlined in one place.

Here's Didion on the use of language in the public debate over Terri's fate:

During the period this spring when the spectral presence called "Terri" dominated the national discourse, such areas of confusion between what was known and not known and merely assumed or repeated went largely unremarked upon. Taking a position, which had become the essence of that discourse, demanded impenetrable certainty. There were two entire weeks during which it was possible to hear the Schiavo case debated all day and all night and still not get it straight whether there was, as people were actually shouting at each other on the cable talk shows, "anybody home." ("You're wrong, Pat, flat line, nobody home.") Theresa Schiavo was repeatedly described as "brain dead." This was inaccurate: those whose brains are dead are unable even to breathe, and can be kept alive only on ventilators. She was repeatedly described as "terminal." This too was inaccurate. She was "terminal" only in the sense that her husband had obtained a court order authorizing the removal of her feeding tube; her actual physical health was such that she managed to stay alive in a hospice, in which only palliative treatment is given and patients without antibiotics often die of the pneumonia that accompanies immobility or the bacteremia that accompanies urinary catheterization, for five years.

Even after the removal of the feeding tube, she lived thirteen days. The removal of this feeding tube was repeatedly described as "honoring her directive." This, again, was inaccurate: there was no directive. Any expressed wish in this matter existed only in the belated telling of her husband and two of his relatives (his brother Scott Schiavo and their sister-in-law Joan Schiavo), who testified in a hearing on a 1998 petition that they had heard Theresa express the thought that she would not wish her life to be artificially prolonged. One time she was said to have expressed this thought was when Michael and Scott Schiavo's grandmother was on life support. "If I ever go like that, just let me go," Scott Schiavo said that he had heard Theresa say. "Don't leave me there." Another expression of the thought, Joan Schiavo testified, occurred when the two women were watching a television movie about a man on a feeding tube: according to Michael Schiavo's attorney, George J. Felos, what Theresa said was this: "No tubes for me."

This may be the first time that the blue-state readership of the New York Review of Books encounters some of the facts and connections that were well-known to readers of Blogs for Terri but which never seemed to make it into the mainstream media coverage of the case. Didion challenges the conventional wisdom on many fronts -- here, the idea that a "living will" is the answer to the dilemmas presented by Terri's situation:

There was considerable fuzziness here, not least in the reverence accorded the "living will," which seemed increasingly to be another of those well-meant and seemingly unassailable ideas that do not quite work the way we are encouraged to think they work. The chances of being admitted conscious to a hospital without being pressed to produce a living will have become virtually nil, yet any "living will" prepared in advance (as in "advance directive," exactly the document we are pressed to produce) requires us to make specific medical decisions about situations we cannot conceivably anticipate. According to studies cited last year in the Hastings Center Report by a medical researcher and a law professor at the University of Michigan, Angela Fagerlin and Carl E. Schneider, almost a third of such decisions, after periods as short as two years, no longer reflect the wishes of those who made them. The "health care proxy" or durable power of attorney, through which we assign someone we trust to make the decisions we can no longer make, is the better document, but it optimistically presupposes that we will each have with us at end of life "someone we trust."

The further problem with such directives is that they can be construed as coercive: no one wants to be a "burden." Few of us want to be perceived as considering our own lives more important than the ongoing life and prosperity of the family. Few of us will sit with a husband or wife or child in a lawyer's office or a doctor's office and hesitate to sign the piece of paper that will mean, when the day goes downhill, the least trouble for all concerned. For all the emphasis on the importance of "choice," the only choice generally approved by the culture is to sign the piece of paper, "not be a burden," die.

Whatever your position on the Terri Schiavo case, and whether you paid close attention or not when it was happening, this piece is worth your time and attention.

(Hat tip to Galley Slaves for the link.)