April 1, 2005

Theresa Maria Schiavo, R.I.P.

Saddened by the spectacle Terri's death became, horrified by the manner of her dying where the judge forbade even ice chips to ease her suffering, I haven't reflected sufficiently on her legacy to write about, so I offer you these links.

From the Washington Post

THE DEATH yesterday of Terri Schiavo concludes a legal battle, but its moral quandaries live on. The Schiavo case gripped the nation because of the lines drawn between life and death, and the middle ground of dementia or coma, agonizingly hard areas to delineate. In addition, because of a mute understanding that this subject is too awful to contemplate, a discussion of Schiavo-like choices has not fully penetrated the public square. It will be a healthy thing if this taboo is permanently shattered. We may not want to discuss death, but it will come to all of us. And, because of medical technology, more people will be empowered, or perhaps some would say condemned, to make judgments about when life is worth living, and when not.

A century ago, death usually came abruptly; the most frequent causes were pneumonia, tuberculosis, diarrhea and injuries, sudden killers all. Today, the average American spends two years disabled enough to need help with the routine activities of living; and growing numbers survive to be 85 and older, at which point they have a 50 percent chance of suffering dementia before they die. In 2000, there were 4.2 million Americans in the 85-plus cohort, but by 2030 there will be nearly 9 million, according to a paper for the Rand institute by Joanne Lynn and David M. Adamson. We speak of people being "snatched from life." Death, for more and more Americans, however, is the final stumble in a slow decline.

We have not adjusted to this transformation, in emotional, moral or economic terms. .......Many Americans, and not just social conservatives, feel that life is always worth preserving and that wavering from this principle opens the door to selfish relatives who don't want the burden of caring for the vulnerable. It's an honorable outlook -- also a natural one. Many believe on religious grounds that life is sacrosanct. With the survival instinct hard-wired into human nature, others find it difficult to contemplate the extinction of the self. Yet there has to be space in a free society for others to differ: to draw up living wills that specify limits to life-prolonging medical interventions, and perhaps also to opt for assisted suicide........Thanks to Terri Schiavo, a national conversation is, we hope, beginning.

From the New York Times

One of the most astonishing things about the human experience is the realization that loved ones die. The first time it happens, we are invariably amazed that nearly everyone who has ever lived has weathered an experience so wrenching. We see other humans on the street and in the shops and marvel that they manage to simply go about their business - that there is no constant, universal primal scream in the face of such an awful fact.

That level of grief seldom brings out the noblest emotions. The sufferers can barely make their way through the day, let alone summon their best reserves of patience and compassion for the lucky people who continue to live. In the case of Terri Schiavo, the whole world witnessed what happens when that natural emotional frailty is taken captive by politics.

It was awful, and according to the polls, the American public shrank from the sight of it.

From Ellen Goodman, The Boston Globe

It's why we need a healthcare proxy as well as a living will. We need someone we can trust and burden with the authority to make decisions for us when we are unable.

But this too will require some deeper, bolder, tough talk: If we don't want to live ''like that," how do we want to live? Like what?

A Wellesley College bioethicist, Adrienne Asch, says: ''The typical advance directive or living will does not ask the right questions. It asks what sort of medical intervention we want or don't want. The question that we ought to be asked is what am I experiencing? What will make me feel that I have something to live for? What is enough?"

Asch, who is blind and very conscious of societal attitudes toward disabilities, says that if she wrote the living will form, it would ask people to imagine themselves in a range of scenarios. When would we want our lives prolonged by medicine? In her own advance directive she has written that ''as long as the people who know me believe that I recognize them and can differentiate them from strangers, I want to be alive." After that, enough.

People on all sides share a moral obligation. We need to let the people we leave behind mourn with the clear conscience that, as much as possible, they did what we wanted.

Terri Schiavo was only 25 when this tragedy began. Her family has been, simply, devastated. We owe our own families much, much more than that.

From It is Ended by William Anderson, senior psychiatrist at Mass General Hospital.

SO IT HAS ENDED. The nightmare of judicial execution by dehydration is finally over. How could such a thing have happened? Students of law, medicine, and ethics will examine this tragedy for decades to come.
To withhold minimal comfort measures such as water is gratuitous cruelty. But the judge must be convinced of his probity and rectitude, for he alerted every sheriff in Florida to be vigilant in preventing a chip of ice from entering Terri's mouth. And appellate courts declined to interfere with this travesty of justice on the grounds that proper procedures were followed. Thus they became complicit in the evolving tragedy.

Much mischief is set loose when the uncertain judgments of medical diagnosis are conflated with the rigid categories of the law. Unlike coma or brain death, persistent vegetative state is a diagnosis that depends on subjective judgment. It requires a finding of unresponsiveness in an awake and alert person. Even skilled diagnosticians may disagree on this assessment. It does not necessarily preclude the possibility of improvement. It has no definitive laboratory tests.

Thus the diagnosis of PVS is not reliable in a forensic sense, and should not be used in life and death decisions. It is a
clinical diagnosis, which prescribes treatment measures in normative medical practice

Posted by Jill Fallon at April 1, 2005 5:52 PM | Permalink