The bioethics committee at St. Luke’s Hospital in Houston, Texas has decreed that Andrea Clarke should die. Indeed, after a closed-door hearing, it ordered all further medical efforts to sustain her life while at St. Luke’s to cease. As a consequence, Clarke’s life support, required because of a heart condition and bleeding on the brain, is to be removed unilaterally even though she is not unconscious and her family wants treatment to continue.
Andrea Clarke may become an early victim of one of the biggest agendas in bioethics: Futile-care theory, a.k.a., medical futility. The idea behind futile-care theory goes something like this: In order to honor personal autonomy, if a patient refuses life-sustaining treatment, that wish is sacrosanct. But if a patient signed an advance medical directive instructing care to continue–indeed, even if the patient can communicate that he or she wants life-sustaining treatment–it can be withheld anyway if the doctors and/or the ethics committee believes that the quality of the patient’s life renders it not worth living,
Contrary to how it sounds, medical futility is not a matter of refusing treatment that will not provide the medical benefit the patient seeks. Refusals of requests for such “physiologically futile care” would be proper and professional. For example, if a patient demanded that a doctor provide chemotherapy for an ulcer, the doctor should refuse, since chemo will do nothing to treat the ulcer.
But Clarke’s case involves value judgments rather than medical determinations. In such “qualitative futility” cases, treatment is stopped in spite of a patient’s or family’s objections–the intervention is necessary not because the treatment doesn’t work, but because it does. In essence then, it is the patient’s life that is deemed futile and, hence, not worthy of being preserved.
We should also note that the Clarke controversy isn’t anything like the Terri Schiavo case. Schiavo’s tube-supplied food and fluids were ordered withdrawn (supposedly) to carry out her wishes. But Clarke apparently wants to live and her family all agree that she should continue to be sustained. In other words, it is as if Michael Schiavo and Terri’s parents, Bob and Mary Schindler, agreed to maintain Terri’s feeding tube but a hospital ethics committee overruled their decisions and doctors removed the tube anyway.
Hospitals around the country–nobody knows how many–have been quietly promulgating internal rules to permit patients like Andrea Clarke to be denied wanted treatment to maintain their lives. But the legality of internal ethics committees acting as quasi courts to order unilateral treatment refusal remains uncertain in most states.
Texas, however, has become ground zero for futile-care theory thanks to a draconian state law passed in 1999–of dubious constitutionality, some believe–that explicitly permits a hospital ethics committee to refuse wanted life-sustaining care. Under the Texas Health and Safety Code, if the physician disagrees with a patient’s decision to receive treatment, he or she can take it to the hospital ethics committee. A committee hearing is then scheduled, all interested parties explain their positions, and the members deliberate in private.
If the committee decides to refuse treatment, the patient and family receive a written notice. At that point, the patient/family has a mere ten days to find another hospital willing to provide the care, after which, according to the statute, “the physician and health care facility are not obligated to provide life-sustaining treatment.”
Since the patients threatened with death by ethics committee are often the most expensive to care for, it will often be difficult for families to find other institutions willing to accept a transfer. But the futility deck may be especially stacked against Houston patients. Many city hospitals participate in the “Houston City-Wide Guidelines on Medical Futility,” raising the suspicion that participating hospitals will not contradict each other’s futility decrees.
If so, this would mean that patients seeking refuge from forced treatment termination will have to be transported to distant cities, as has already occurred in a few futile-care cases, perhaps even out of state. Illustrating the level of hardball some hospitals play against patients and families, the Clarke family’s lawyer Jerri Ward told me that St. Luke’s agreed to pay the $14,806 transportation costs to transfer Clarke to a hospital in Illinois–more than 1,000 miles away–if the decision to transfer is made on Thursday (4/27). If the family doesn’t decide until Friday, the hospital will pay only one-half of the cost of transportation. Thereafter, it would pay nothing.
Cases like Andrea Clarke’s could not be more important. If the principle is ever established that doctors, hospitals, and faceless ethics committees can dictate who can live and who must die, the already weakening faith of the American people in their health-care system will be seriously undermined and the door will be thrown wide-open to medical decision-making based on discriminatory hierarchies of human worth. As German physician Christoph Wilhelm Hufeland wrote presciently in 1806, “It is not up to [the doctor] whether . . . life is happy or unhappy, worthwhile or not, and should he incorporate these perspectives into his trade . . . the doctor could well become the most dangerous person in the state.”
–Wesley J. Smith is a senior fellow at the Discovery Institute, an attorney for the International Task Force on Euthanasia, and a special consultant to the Center for Bioethics and Culture. His website is www.wesleyjsmith.com.