MANAGED CARE April 2004. ©MediMedia USA
Discussing differing viewpoints brings a rich complexity to a rational exchange about whether it's ever right to deny life-saving treatment against someone's will.
A loyal reader asked me to comment on the Hazard To Our Way of Life posed by something labeled Futile Care Theory. This person sent me an article by Wesley J. Smith that recently appeared in the Weekly Standard. It warned Americans about the dire effects FCT had already wrought in England. It predicted that this was "a harbinger of medical woes to come here in the United States." In fact, "the dark shadow of Futile Care Theory has already reached our shores." Yikes! Warn the hobbits!
Now, I would be the first to sound the alarm about some things that might invade from England. Two that come to mind are bovine spongiform encephalopathy and any form of English cuisine. But the real concern Americans should have about Futile Care Theory is that — there is no such theory. It's simply a slogan used by people who take a particularly narrow view of a broad class of problems in bioethics. Think of it as, "Right to Life, II."
Argument or propaganda?
The Weekly Standard article discussed two medical cases that had come before the British courts. It doesn't give enough detail to make out what they were about. Apparently, both involved circumstances where there was a question about the appropriateness of life-sustaining treatment. This, of course, is an important and worthwhile ethical topic, full of unresolved dilemmas. It certainly deserves wide public discussion in newspapers. What it does not deserve is a public relations campaign.
One clue that you are reading propaganda is when the only people who call something a "theory" are those who oppose it. (If proponents say it's a theory, it probably is.) Whoever labels a problem with a neat epithet often gets to color how journalists portray it. "Yellow Peril," "Red Menace," and "Managed Care" are examples.
But, just because there is a label for something doesn't mean it exists. Everyone has heard of "pink elephants," but — hopefully — they will never be the subject of public debate. (But, then, who thought "dangling chads" would?) The trick of using sensational labeling to disparage an argument is classic.
FCT is not any kind of "theory." It is a purposeful mislabeling of a body of ethical problems that generally pertain to the difficulty of defining "futility" in terms that could be applied to treatment guidelines and to the ethical difficulty (though it is inescapable) of introducing "prognosis" and "quality of life" into policy decisions about allocating resources.
Of course, just because a viewpoint is raised by an advocate isn't a reason to dismiss it. On the contrary, compelling problems (both personal and public) about the benefits of care lie at the core of medicine, and are openly confronted in managed care. There is little difference logically when asking if a treatment is "futile" compared to asking when it is "beneficial." This question is inherent in every recommendation from a clinician; every informed consent faced by a patient; every coverage policy from an insurer; every malpractice judgment; every research trial; every decision to stop CPR. "Futility" versus "benefit" is the fundamental problem of medical therapeutics.
But Futile Care Theory isn't about the calculus of benefit. It simply focuses on the question of whether it is ever right to deny life-saving treatment to someone against his or her own (or someone else's) wishes. This is a poignant problem that surfaced in the early days of advance directives, when caregivers were wrestling with the question of whether they were bound to honor patients' wishes when they disagreed with them. Initially, this took the form, "Should I comply with a patient's request to stop treatment, when I would like to continue?" But, inevitably the question broadened to, "Do I have to comply with a demand to provide treatment, when I think it's unwanted or unwarranted?"
"Respect for Persons" (a more neutral phrase, recognized by more than one presidential commission on bioethics) recognizes both individual desires and individual worth (to self and others). These things must be balanced against social goods such as public interest and public resources, professional responsibility, social justice and science.
In "futility" cases, the tension is usually between "respect for a person" (or "respect for life," in the abstract) and "avoidance of harm." But, the same tension can occur on the social policy axis between "respect for a person" and "responsible stewardship."
Any responsible care system deals with "benefit" and "futility" — for treatments that don't usually involve life or death — a thousand times a day. Evidence-based medicine is supposed to be the foundation for policy decisions about what is worth doing and what is not. For "antibiotics for viral colds" or "chelation therapy for atherosclerosis," any court would be on good ground to rule against a suit demanding treatment.
Insufficient evidence
However, in the emotional area of life-sustaining care, there is often not enough evidence, or not enough consensus, for evidence-based solutions to apply. We have plenty of legal precedents to study about "disputes over denial of care" here in the U.S. without importing them from England, although British cases can sometimes offer unique perspectives. A current example is the case of Terri Schindler-Schiavo — a comatose woman for whom the Florida legislature took the unusual step of passing a law specifically to prevent the withdrawal of her treatment. The political pressure in cases like this often comes from the fact that there is strong support in America for three opposing philosophical attitudes toward "life."
One is essentially the vitalist position that "life is an end in itself." Adherents often argue that there is no way to balance any material good against the value of life — at least human life — in any form, regardless of its "quality."
The second is the more mainstream position that "life is a gift, to be respected — but not above all else." People who hold this view admit that there are values that can sometimes compete with the value of life itself, such as defense of the innocent or one's country, acceptance of a terminal disease, or escape from suffering.
The third position holds that life is not an end in itself, but only a means by which to enjoy the "qualities" that make life worth living, like sensation, contemplation, pleasure, social interaction, and so on. If a time comes when these qualities are absent, then mere biological existence has no special value.
Rich complexity
These attitudes bring rich complexity to any rational discussion about futile care. In these debates, premises from one sphere of human values aren't usually opposed by their direct antitheses ("is so — is not"), but more often have to be weighed against ideas belonging to different domains of mind.
Smith's article is a call to arms against an artificial threat. He even injects a xenophobic (and legally imprecise) warning about the potential influence of the British courts: "The U.S. Supreme Court now looks to European courts for precedent and guidance...." Smith's chief fear seems to be that there might ever be a legal case in which a decision was reached that it was appropriate to discontinue care.
"Futility" is not a straightforward or univocal topic. The question of when treatment should be discontinued from cases with little or no hope of benefit is a highly faceted issue, a moving target as biotechnology and delivery systems change. Although it overlaps the territory of "advance directives," the "futility" problem is grounded almost entirely in the difficulty of proxy decisionmaking for vulnerable persons, where "autonomy" is not the driving concern. There's no "theory" that tells us how to do that.