WHEN JOHN CAMPBELL’S TEENAGE SON CHRISTOPHER became comatose after a car accident in 1994, the last problem Campbell expected was obtaining proper medical treatment for his son. Campbell, a corporate executive, had excellent health insurance and was convinced Christopher would receive the best of care. But then something awful happened. One month after the accident, Christopher developed a burning fever. When his temperature reached 105—and rising—Campbell asked the attending nurses why his son was not being treated for the condition that now threatened his life. He soon found out: Christopher’s doctor was out of town and the on-call physician had refused to order care. The nurses told Campbell they were helpless to act on their own.
Campbell demanded to speak with the doctor. It took hours before the nurses were able to reach him on the phone. By then Christopher’s fever had worsened to 107 degrees. “He was literally burning up,” Campbell recalls. “I knew that if something was not done, he would die.”
Campbell demanded treatment to reduce his son’s fever. At first, the doctor refused. “He actually laughed,” Campbell recalls. But the distraught father wouldn’t give up: “I raised holy hell. I used every ounce of persuasion I had in me.” Finally, reluctantly, the doctor ordered the nurses to provide fever-reducing medicine, and the fever subsided.
Christopher was completely unresponsive for more than four months after the fever incident. Then, against medical expectations, he awakened. Today, after years of arduous rehabilitation, he lives with his parents, a disabled young man who counsels troubled teenagers and who, with his father’s help, created a foundation that feeds 30 hungry African children breakfast 365 days a year. But had Campbell not successfully pressured the doctor into saving Christopher’s life, none of that would have happened. Christopher Campbell would be a cherished memory instead of a living son.
The physician’s refusal to provide Christopher desired life-sustaining treatment was an early application of a relatively new bioethical theory that has since swept the Western medical world. “Futile care theory” holds that when a physician believes the quality of a patient’s life is too low to justify life-sustaining treatment, the doctor is entitled to refuse care as “inappropriate”—even if the treatment is wanted. It is the equivalent of a hospital putting a sign over its entrance stating, “We reserve the right to refuse service.”
Of course, doctors should not be required to provide physiologically futile treatment. For example, if an ulcer patient demands chemotherapy, doctors should refuse, since the desired “treatment” would not improve the ulcer at all. But “physiological futility” of this sort is not the essence of contemporary futile care theory. Rather, in medical futility bioethicists and doctors unilaterally determine when the quality of a human life, or the cost of sustaining it, makes it not worth living.
Proponents of futile care theory often cite tube feeding for patients in a persistent vegetative state as an example of “futile” or “inappropriate” treatment. Let’s analyze this. What is the medical purpose of “artificial nutrition”? It keeps the body functioning. Why do many futilitarians (as they are sometimes called) wish to authorize doctors to refuse such treatment? Not because it doesn’t work—as in the example of the demand for chemotherapy to treat an ulcer—but because it does. Thus in futile care theory the treatment itself isn’t denigrated as futile—the patient is.
One way patients or families currently thwart futile care impositions is by threatening to sue. To counter this threat, futilitarians are moving on two fronts to all but guarantee that courts will ultimately acquiesce to futile care theory. First, in hospitals nationwide they are quietly promulgating formal, written futile care protocols that establish procedures under which wanted treatment can be refused. Second, they are beginning to place language in federal and state legislation that would stamp the government’s imprimatur upon the core principles of futile care theory.
For obvious reasons, hospitals don’t hold press conferences to announce the institution of futile care protocols. Thus no one actually knows how many institutions across the nation have decided to impose futile care theory on unsuspecting patients, but there is little doubt that many have. In 1996, the Journal of the American Medical Association reported that several Houston hospitals had cooperatively created a medical futility policy designed to establish “professional integrity and institutional integrity” as a counterbalance to “patient autonomy.” Ethics committees were granted the power to decide whether life-sustaining treatment should be provided as requested or withdrawn over patient/family objection. Once the ethics committee rules, the matter is settled, and all further “inappropriate” care may be terminated unilaterally. The Mercy Health System, a group of Philadelphia-area Catholic hospitals, instituted a similar futility program last year, described in “Time for a Formalized Medical Futility Policy,” published in the July/August 2000 Health Progress. And in an article on medical futility in the Fall 2000 Cambridge Quarterly of Health Care Ethics, the authors reported that 24 out of 26 California hospitals they surveyed “defined nonobligatory treatment” in terms that were not “physiology based.”
One of the stated purposes behind these hospital protocols is to thwart patients’ ability to obtain a judicial order requiring the continuation of life-sustaining care. As the Cambridge Quarterly authors put it, “Hospitals are likely to find the legal system willing (and even eager) to defer to well-defined and procedurally scrupulous processes for internal resolution of futility disputes.” In other words, the strategy is to convince judges that, as mere lawyers, they are ill-equipped to gainsay what doctors and bioethicists have already decided is best.
As if that weren’t enough cause for alarm, federal and state legislation is now being introduced that would explicitly empower doctors to deny life-sustaining treatment against the will of patients or their families. The most blatant example is found in Senator Arlen Specter’s 171-page “Health Care Assurance Act,” which seeks to expand health coverage for children and disabled people, among many other provisions. Buried deep in the bill is Title VI, which authorizes patients to consent or refuse medical treatment. That’s fine. But the kicker comes in subsection B(ii), which is steeped in the lexicon of futile care theory:
Treatment which is not medically indicated.—Nothing in this subsection shall be construed to require that any individual be offered, or to state that any individual may demand, medical treatment which the health care provider does not have available, or which is, under prevailing medical standards, either futile or otherwise not medically indicated. [Emphasis added.]
As currently written, the bill would be a disaster for the most vulnerable and defenseless among us: patients who are dehumanized and viewed as parasitic drains on limited health care resources. Indeed, imagine the different fate that would have befallen Christopher Campbell had the doctor who refused to treat his fever been empowered by federal law to tell his father that sustaining the life of a persistently comatose patient was “not medically indicated under prevailing medical standards.”
The New York state legislature also has two bills pending that would implement futile care theory. The “Health Care Decisions Act for Persons with Mental Retardation” would permit physicians and hospitals to refuse treatment requests by the guardians of mentally retarded patients, if the doctor would not have honored an identical request from a competent patient “because the decision is contrary to a formally adopted written policy of the hospital expressly based on religious beliefs or sincerely held moral convictions central to the hospital’s operating principles.” A formally adopted futile care protocol would clearly fall into this category.
A similar policy in AB 5523, legislation establishing the rights of surrogate health care decision-makers, would permit a hospital ethics committee to “approve or disapprove” a request to render wanted life-sustaining treatment. Adding to the potential for abuse, the workings of the ethics committee would not be “subject to disclosure or inspection,” nor would any committee member be allowed to “testify as to the proceedings or records of an ethics review committee, nor shall such proceedings and records otherwise be admissible as evidence in any action or proceeding of any kind in any court . . . ” In short, ethics committee adjudications could become the moral equivalent of Star Chamber proceedings, with members empowered literally to decide issues of life and death in an atmosphere of secrecy and unaccountability.
Under both pieces of New York legislation, caregivers who disagreed with futile care impositions would have the option of changing hospitals. But in these days of managed care, when the sickest patients generally cost hospitals money rather than bring profits, this option is more mirage than reality.
Should a hospital transfer prove unavailable, the legislation requires the hospital to “seek judicial relief or honor the [patient/family’s] decision.” But families would face a badly stacked deck when sued: State law and the written hospital protocol would already have formally legitimized futile care theory, making a hospital victory far more likely. Moreover, hospitals have deep pockets from which to pay $500-per-hour lawyers, the substantial fees of doctors, and bioethicists who would testify that refusing wanted care is both ethical and standard medical practice. Patients or caregivers, on the other hand, would have to pay lawyers and experts out of their own pockets, potentially leading to financial ruin.
In California, futile care theory has already been legalized. A review of language recently put into the Probate Code finds that a “health care provider or health care institution may decline to comply with an individual health care instruction or health care decision that requires medically ineffective health care [physiological futility] or health care contrary to generally accepted health care standards applicable to the health care provider or institution.” [Emphasis added.] In other words, if an institution defines certain types of wanted life-sustaining treatment as contrary to their internal standards, doctors can refuse to render the care. At that point, the doctor must cooperate with the transfer of the patient to another institution and continue to provide the care until transfer “or until it appears that a transfer cannot be accomplished.” Presumably, if no other hospital agrees to take the patient, the non-treatment decision can be imposed unilaterally.
Why is this happening? The usual bioethical rationale for imposing medical futility on defenseless patients is “distributive justice”—i.e., a Montana hospital should deny Grandma Jones wanted life-sustaining antibiotics or respirator care so society can provide health benefits to uninsured Little Suzy in Appalachia. Thus it is hardly surprising that Senator Specter included an explicit futile care provision in legislation designed to expand access to health care.
Yet ironically, imposing futile care theory on patients will not save much money, since end-of-life care constitutes only about 10 percent of total health care expenditures. Futilitarians know this, of course—which is why some already advocate restricting access to “marginally beneficial care” once the futile care fight is won. And what is marginally beneficial care? A few years ago Dr. Donald J. Murphy, a leader of the futile care movement, gave me the example of an 80-year-old woman requesting a mammogram.
Thus medical futility is not an end but rather the beginning of a thousand-mile journey leading directly to society-wide health care rationing—a euphemistic term for medical discrimination, based on subjective quality-of-life criteria, against patients who are elderly, expensive to care for, disabled, or dying. Eventually, this will include all of us. We ignore the threat of futile care theory at our own peril.