End-of-life decisions

As it happens, students in my class are this week reading about the contexts in which and the processes by which we make decisions about the ends of our lives—or those of the people we care about. First they read from Stefan Timmermans’ Sudden Death and the Myth of CPR (which I wrote about a while back), a key argument of which is that technology has allowed us to medicalize death so that it is no longer a natural part of the life cycle—something that we may understand as being a solemn but dignified event marked by social rituals—but an event that we can avoid or push away with increasingly intrusive technological means. Timmermans isn’t thoughtlessly critical of the ability to save lives, but he questions the extent to which we have come to shape our understandings of death with technological tools rather than social processes that allow us to mark transitions and honor or celebrate loved ones.

To bring focus to those social processes, my students then think about two more pieces of writing: Atul Gawande’s “Whose Body is it, Anyway?” from his Complications: A Surgeon’s Notes on an Imperfect Science, and an article by Angela Fagerlin and colleagues on “The Use of Advance Directives in End-of-Life Decision making” [1]. Gawande writes about the profound uncertainty that can accompany medical decisions—on the parts of both patients and providers. While Gawande believes that patients need to have informed consent and play a role in their treatment, he notes that, when given the choice, patients may indeed make objectively wrong decisions. His dilemma then becomes how to reconcile patient autonomy—the right to make an unwise choice, even—with clinical judgement when the two come into conflict. Meanwhile, Fagerlin, et al, observe that even among very sick patients the use of advance directives in the United States is low, a situation that is greatly complicated by the reality of executing advance directives: Even if directions exist, caregivers may choose not to execute them, and loved ones may question how accurate the directions are or how persistent one’s preferences are. We have enough trouble predicting what we want for breakfast tomorrow; imagining ourselves in a literally unimaginable situation and making a decision about our wishes in such a state is terribly hard to do in concrete terms—and formal advance directives require a very high degree of specificity.

What makes the interpretation of advance directives easier? The authors suggest that having more distant decision-makers execute them is one way; rather than spouses or family members who have unbearable amounts of emotion invested in an outcome, they point to attorneys, family friends, or other trusted parties. Fagerlin et al argue that advance directives are greatly flawed, but still valuable, because when carefully articulated they can be a voice for patients no longer able to speak for themselves, and they provide an important opportunity to confront mortality that we might otherwise be uncomfortable to take up.

Would an advance directive have made the Schiavo case simpler? Perhaps, but it would not have resolved the debate about what, in the end, to do. So at some point we have to make actual real-world decisions, and to help us face uncertainty and emotion, we have processes in place to help us navigate this terrain. Advance directives and advanced technology are in a way counterveiling powers that push us in two directions at once.[2] Our preferences are hard to predict and hard to suss out, so we have to trust the people who may someday be in a position to make choices for us. Various laws, such as they are currently, specify who is to hold that power absent other directions. Technology, meanwhile, makes fatal injuries less fatal, but it also makes diagnoses more sure. Deaths from fatal heart attacks may be prolonged, but as Timmermans observes, death still comes—but it is a qualitatively different kind of death.

The difficulty of determining and following through with the wishes of a loved one to live or not live on life-sustaining machines is profound enough as it is. As Art Caplan writes (via Alas, a Blog and

... The authority to make that decision has fallen to those closest to the person who cannot make their own views known. First come husbands or wives, then adult children, then parents and other relatives.

That is why Michael Schiavo, despite all the hatred that is now directed against him, has the right to decide his wife’s fate. The decision about Terri’s life does not belong to the U.S. Congress, President Bush, Rep. Tom Delay of Texas, Florida Governor Jeb Bush, the Florida Legislature, clerics in Rome, self-proclaimed disability activists, Operation Rescue founder Randall Terry, conservative commentators, bioethicists or Terri’s parents. The decision is Michael’s and Michael’s alone.

I’m having trouble characterizing the efforts of the House and Senate to write a new law specifically to prevent Michael Schiavo from removing his wife’s feeding tube. “Unseemly” isn’t strong enough; “monstrous” comes closer; “ghoulish,” maybe. Andrew Cohen says that the law, because it is doomed to be found unconstitutional, is a symbol of “politics of cynicism at its very best (or very worst).” I think that’s too generous; it’s a symbol of the desire to exercise power at all costs in the name of dime-store moralizing.

Earlier I wrote that the politicization of this issue is sickening. Seeing conservative politicians falling over themselves to condemn Mr. Schiavo’s determination to do what he sincerely believes his wife would have wanted—an action that is legal and has been found by courts to likely be consonant with her own wishes—is deeply disheartening. Some observers have implored Schiavo to take the six- or seven-figure sums of money that have been offered to him to abandon his guardianship of his wife; I see it as a symbol of his committment to what he believes to be his duty to her that he has not taken any of these offers. To pretend that this decision is arrived at cheaply is a tremendous insult and belies an interest in politics rather than the best interests of anybody involved.

1 Fagerlin, Angela, Peter H. Ditto, Nikki Ayers Hawkins, Carl E. Schneider, and William D. Smucker. 2002. “The Use of Advance Directives in End-of-Life Decision making.” American Behavioral Scientist 46 (2): 268-283.

2 Robert Rizzo has some additional thoughts on some of these issues in a 2000 article in Theoretical Medicine and Bioethics: “Physician-Assisted Suicide in the United States: The Underlying Factors in Technology, Health Care and Palliative Medicine—Part One.”