University of Washington researchers posed a bizarre hypothetical question to 57 patients in an end-of-life medical study: You're dying of AIDS-related pneumonia and have less than three months to live. Would it be acceptable for your doctor to withhold mechanical ventilation from you-without ever offering it in the first place?
Every patient in the study, the results of which were released last week, actually is dying of AIDS. Sixty-one percent of them told researchers that it would definitely be acceptable for doctors not even to offer them respiratory assistance under the circumstances described. Twenty-six percent said that would probably be acceptable, but 13 percent said it would definitely not be, or probably not be, acceptable.
The real question is, why are researchers asking patients if they would mind if doctors let them die without first informing them of treatment options?
Wesley J. Smith is an attorney for the International Anti-Euthanasia Task Force. He believes the UW study-along with myriad journal articles, bioethics debates, and academic symposia-was designed to build statistical scaffolding for something called "futile-care theory." Also known as "medical futility" or "non-beneficial care," doctors and hospitals practice "futile care" when they set predetermined age limits, medical conditions, or disease states for which medical treatment beyond keeping a patient fed and comfortable is deemed "inappropriate." Patients who fall into particular categories are refused non-palliative medications, testing, and even life support-whether the patient, or the patient's family, want the treatments or not.
A good example is the 1994 case of Baby Ryan, who was born in Spokane, Wash., after just 23 weeks gestation. Ryan required kidney dialysis to stay alive. After determining that an organ transplant would not work for him, doctors ordered the dialysis removed against his parents' wishes-in effect, ordering the baby's death. Ryan would have died then, but his parents sued and obtained a temporary court order to continue treatment. Ryan died last year at age 5.
Propelled by progressive bioethicists, the futile-care debate roils beneath the public radar screen, but rages in the pages of medical journals. The June issue of Archives of Internal Medicine featured an article entitled, "The Patient's Response to Medical Futility." The article noted, "Many fear that insurers may use [futile care] as an excuse to deny payment for costly but beneficial treatments ... some believe physicians might use it ... to justify their failure to deliver all treatments requested of them by patients and their families."
In some hospitals, futile-care theory is now policy. In 1997, Alexian Brothers Hospital in San Jose, Calif., instituted a "Non-Beneficial Treatment" policy. The policy prohibits Alexian health workers from administering CPR to "patients with severe irreversible dementia." It also states that "any additional treatment or testing will be considered inappropriate for a person with ... irreversible coma; ... permanent dependence on intensive care to sustain life; terminal illness with neurological, renal, oncological, or other devastating disease; [or] untreatable lethal congenital abnormality."
This singling out of certain patient groups is one of the problems with futile-care theory, says Mr. Smith. It creates a kind of medical "caste system," he explains, in which some patients are deemed more worthy of care than others. Futile-care also puts doctors in the position of basing treatment decisions on the subjective notion of the potential future "quality" of a patient's life.
Some who support the futile-care theory say withholding treatment is often more humane, since prolonging life in terminal cases is really only prolonging death. Other supporters would use the theory to exact something called "distributive justice." Distributive justice holds that since medical resources are limited, doctors should "spend" them where they will help most. Why "waste" health care dollars on a dying 90-year-old grandma in Florida, for example, when the same money could be used to vaccinate a thousand poor kids in Tennessee?
Joel Hay, a health economist at the University of Southern California, characterizes such arguments as"bogus". "There is no evidence that end-of-life care costs more now than it did 30 years ago. And any economic argument loses credibility when you take it out on people who are least able to defend themselves," he said.
Mr. Smith compares the advance of futile-care theory to other slippery ethical slopes. All 50 states, he points out, made it legal for doctors to hasten death by withholding food and fluids from an unconscious person. "But doctors now also sometimes attempt to starve or dehydrate conscious people," Mr. Smith points out. He cites as examples Michael Martin of Michigan and Robert Wendland of California, two conscious but mentally disabled patients who would have been dehydrated to death had relatives not intervened.
Mr. Smith fears the futile-care slope is just as slippery. "If we are refusing to resuscitate patients with severe dementia," he asks, "how long will it be before we do it to those who are merely mentally ill? Or those who are simply old or poor? Once futile-care is legally entrenched ... we will be well down the road to wholesale health care rationing."