"My mother’s doctor is refusing to give her antibiotics," the woman caller told me in an urgent voice. "Why is he refusing to prescribe antibiotics?" I asked.
"He says that she’s 92 and an infection will kill her sooner or later. So, it might as well be this infection." As disturbing as this call was, and as outrageous the doctor’s behavior, I wasn’t particularly surprised. I have been receiving such calls with increasing frequency over the last several years. Not every day. Not every week. But with enough regularity to know that something frightening is happening to American medical ethics.
There was the case of the Indiana teenager whose doctor refused to treat the boy’s 107 degree fever because he was severely brain damaged from an auto accident. Had the boy’s father not been a powerful corporate executive capable of bringing great pressure to bear on the doctor, his son would have died. Today, the young man is conscious, back home, and slowly recovering.
Then there was the Oregon woman whose nursing home doctor placed a DNR (Do Not Resuscitate) order on her medical chart over her and her family’s objections. Even though the patient was competent to decide for herself, it took a lawyer’s threat of litigation to get the DNR removed from the chart.
Lawyers were also required by the brother of a Colorado woman with brain cancer. When he insisted on continuing treatment after the disease went into remission—a decision with which his sister agreed—the health insurer sued to disqualify him as the surrogate decision-maker. Not only that, threats were made to charge the family for the entire cost of treatment. The case ended when the woman died after surgery to repair a severe bed sore.
These cases show that something is rotten in the state of our current medical system and getting more rotten every day. Patients are entitled to make their own health care decisions based on "informed consent," that is, they may accept or reject medical treatment based on information supplied by the doctor as to its hoped-for benefits and potential risks. Instead they are being precipitously shunted toward the "exit" sign and being urged to take early checkout from life.
Back when a lot of money could be made in medicine keeping people alive on machines, some patients and families complained bitterly that their right to reject unwanted medical treatment was violated by doctors who refused to disconnect life support when it was no longer desired. This was seen, correctly, as an unwarranted interference by doctors with the personal autonomy of their patients. The problem was addressed by enacting laws protecting people’s right to refuse unwanted medical treatment, even if the likely result was death. If anything, we now err on the other side. The imperative for personal autonomy in medicine has now grown so strong that the feeding tubes of cognitively disabled people who are not terminally ill can (inappropriately in my view) be removed at the request of surrogate decision-makers, with the explicit intention of causing their death by dehydration
If people can say no to life-saving medical treatment in the name of autonomy, consistency requires that they also be allowed to say yes. But that is not how things are working out. In the emerging brave new world of medicine, personal autonomy applies strictly only when the "correct" end-of-life health care decision is made. Patients or families who make treatment decisions disapproved of by doctors, government bureaucrats, and health insurance executives—people who choose, in Dylan Thomas’ famous words, to rage against the dying of the light—frequently discover to their dismay that personal autonomy has its limits.
Futile Care Theory
While society and the media have focused primarily on the importance of personal autonomy in the context of the "right to die," little attention has been paid to concurrent efforts to disregard autonomy when a dying or disabled patient wants care that bioethicists, moral philosophers, doctors, and managed-care health insurance executives deem "futile." Futile Care Theory goes something like this: When a patient reaches a certain predefined stage of age, illness, or injury, any further treatment other than comfort care shall be deemed "futile" and shall therefore be withheld, regardless of the desires of the patient or family. The personal values and morals of the patient are no longer relevant. End of story, and often, end of life.
If Futile Care Theory were an objective concept, this would not be cause for alarm. Using an extreme example to illustrate the point: in simple objective terms, a doctor would properly and ethically refuse a patient’s request that a kidney be removed as treatment for an ear infection (even though this request was an act of personal autonomy) because the requested "treatment" would have no possible medical benefit to the patient. Indeed, it would be unethical to remove the kidney since it would cause the patient very real harm.
But this objective approach is not what Futile Care Theory is all about. Rather, as preached by the medical intelligentsia, the notion of futility is based on the perceived subjective value—or better stated, the lack thereof—of the patient’s life. In this context, futilitarianism becomes an exercise in raw social Darwinism in that it views some patients’ lives as having so little quality, value, or worth that the treatment they request is not worth the investment of resources or emotion it would cost to provide.
The first group of patients attacked by futile care theorists were the permanently unconscious. Unsatisfied with limiting the removal of feeding tubes to those circumstances where dehydration is specifically requested, futilitarians have begun to promote ethical policies that require food and fluids be withheld from such patients regardless of the desires of patient or family.
Advocacy of this position comes from the highest levels of the medical establishment. For example, in May 1994, Dr. Marcia Angell, executive editor of New England Journal of Medicine, wrote in the Journal that the legal presumption in favor of life as applied to patients diagnosed with permanent unconsciousness should be removed so that "demoralized" care givers won’t be forced to provide care they believe is futile or which wastes "valuable resources." How? One way suggested by Dr. Angell would be to change the definition of "death" to include a diagnosis of permanent unconsciousness. (A November 1, 1997, article in the British medical journal Lancet, took the next logical step by urging that such "dead" patients have their hearts stopped by injection so that organs could be harvested.)
Realizing the PR difficulties inherent in declaring a breathing body a corpse, Dr. Angell wrote that she would settle for mandatory time limits on providing medical treatment for the unconscious or the creation of a legal presumption forcing families with the "idiosyncratic view" that their loved ones should be given life-sustaining treatment to prove in court that the patient would want such care.
People with severe brain damage are not the only ones futilitarians want to push out of the life boat. In 1993, Daniel Callahan, one of the world’s foremost bioethicists, urged in The Troubled Dream of Life that health care be rationed based on age. He has since gone further, arguing that treatment should be deemed futile if "there is a likely, though not necessarily certain, downward course of an illness, making death a strong probability," or when "the available medical treatments for a potentially fatal condition entail a significant likelihood of extended pain or suffering," or when care would "significantly increase the likelihood of a bad death."
These definitions are so vague that almost any serious life-threatening medical condition potentially qualifies. Moreover, they beg the question: what if patients want to assume such risks of treatment in order to save their lives?
All of this sounds suspiciously like the creation of a duty to die. Indeed, the idea that people deemed done for by the medical intelligentsia have such a duty is under active discussion within bioethical circles. A peer reviewed article, "Is There A Duty to Die?" in the March-April 1997 Hastings Center Report—one of the world’s most respected bioethical journals—is a case in point. According to the author, John Hardwig, an East Tennessee State University medical ethics professor, among those with a "duty to die" are the elderly above the age of 75 and people whose continued life will "impose significant burdens—emotional burdens, extensive care giving, destruction of life plans." Among others who are expendable are people whose loved ones "have already made great contributions—perhaps even sacrifices—to make their life a good one," and people whose illness or disability renders them "incapable of giving love." People who don’t accept this duty, according to Hardwig, suffer from "a moral failing, the sign of a life out of touch with life’s basic realities."
It is important to emphasize that these advocacy articles are not the ranting of some fringe. They are being published in the most prestigious medical and ethical journals in the world and insinuating their way into a status of respectability. It is the beginning of the route to consensus which effectively excludes public input. The "experts" argue among themselves in professional publications and seminars about what a specific health care policy should be. Agreement is eventually reached and then it is on to the courts and legislatures to solidify these agreed upon policies into legal precedent and statutory law.
We have seen this routine before. Fifteen years ago, journals such as the New England Journal of Medicine and the Hastings Center Report led the way in molding an ethical consensus that tube-supplied food and fluids should be considered medical treatment, leading directly to current laws and court decisions permitting intentional dehydration of people—both conscious and unconscious—suffering from severe cognitive disabilities. Ten years ago the discussion concerned living wills. Five years ago (and continuing), the hot topic was assisted suicide. In some sense, Jack Kervorkian is merely a battering ram for those who follow him but never have to deal with the outrage his activities occasion.
Pay close attention to this ongoing dialogue in the medical world today and it becomes vividly clear that Futile Care theorists seek to create public policies that promote death as the answer to the problems of old age, debilitating and terminal illnesses, and dependency caused by cognitive disability. Futile Care advocates view people who reach these stages of life as better off dead—for their own benefit, for that of their families, and for society. If "choice" achieves the death goal, thereby preserving the ideal of personal autonomy, all well and good. But if the claims of personal autonomy are a hindrance, then "choice" will be discarded as counterproductive and the decision will be made for the patient and family.
From Theory to Practice
Futile Care Theory is not merely some ominous possibility lurking in the future. It is already being imposed on some patients. In Michigan, when the parents of the prematurely born infant, Baby Terry, refused doctors’ advice to turn off their child’s life support, they were brought up on charges of child abuse and stripped of their right to make medical decisions for their baby—solely because they insisted on continuing medical treatment. (The child died before the trial court’s decision could be appealed.)
In Massachusetts, a 71-year-old woman, Catherine Gilgunn, explicitly instructed doctors and family that vigorous efforts be made to keep her alive. After she became unconscious from a stroke, rather than obeying her instructions as reiterated by Mrs. Gilgunn’s daughter, the doctor instead removed her from the respirator, resulting in death. The family sued for malpractice but lost the case when the judge instructed the jury that any treatment that did not promise a cure was futile.
In the state of Washington, another family was turned in for child abuse by a hospital administrator when they obtained a court injunction ordering kidney dialysis to continue for their prematurely born son, known as Baby Ryan. Next, the doctors and hospital administrators vigorously fought the parents in court over who had the right to decide the level of Ryan’s care. Doctors even signed sworn affidavits that the child had "no chance" of surviving, arguing that continued treatment thereby violated their ethics. Happily, the doctors were dead wrong. Baby Ryan survived when his care was transferred to another medical team. Today, at age 5, Ryan struggles to overcome health problems associated with his premature birth, but he no longer needs kidney dialysis. Had the doctors’ "values" prevailed over the autonomy of the parents, Ryan would be but a painful memory.
These legal cases are the first drops of a coming torrent. All over the country and to an ever increasing degree, policies permitting the refusal of desired care for the frail elderly, very prematurely born infants, those who are diagnosed as permanently unconscious, the severely disabled, and the terminally ill—the weakest and most vulnerable among us—are being formally implemented and put into clinical practice.
In February 1997, the Alexian Brothers Hospital in San Jose, California, instituted a formal Futile Care ("Non-Beneficial Treatment") policy. Its stated purpose: "to promote a positive atmosphere of comfort care for patients near the end of life" and to insist that "the dying process must not be unnecessarily prolonged." Who decides what is unnecessary prolongation of dying? The hospital, of course.
The Alexian Brothers policy presumes that requests for medical treatment or testing, including CPR, is "inappropriate" for a person with any of the following conditions:
• Irreversible coma, persistent vegetative state, or anencephaly.
• Permanent dependence on intensive care to sus-tain life.
• Terminal illness with neurological, renal, oncological, or other devastating disease.
• Untreatable lethal congenital abnormality.
• Severe, irreversible dementia.
The only care such patients are entitled to receive is comfort care.
This is devastating to such people who want treatment. Under the policy, healthy severely mentally retarded people could be denied CPR that their families want for them as well as other medical treatments such as antibiotics to fight infection and reduce fever. Dying people may be denied the extra weeks or months of life that desired CPR might provide them. People who are deemed permanently unconscious (a condition notoriously misdiagnosed) will have tube-supplied food and fluids withheld whether their families agree or not.
Worse yet, doctors who violate this policy must "provide written justification" for the treatment provided. Moreover, to ensure that doctors toe the line, snitching is encouraged by nurses and others against physicians who provide treatment or testing "such as antibiotics, dialysis, blood tests, or monitoring," that the hospital’s policy has declared inappropriate. The punishment for deviation from the policy is unmentioned, but it can be presumed that a doctor who consistently refuses to follow the hospital’s dictates would be in jeopardy of losing staff privileges.
Patients and families are also subjected to pressures that are hard to withstand. If the patient or family "insists on continuing treatment after advisement that it is non-beneficial," the matter is sent to the bioethics committee, an anonymous group whose deliberations are held in private. "If the recommendations of the bioethics committee are not accepted by the patient (or surrogate), care should be transferred to another institution." And if, as is often the case, there is no other institution willing to take the patient? The policy is silent, but one presumes the care will be refused despite patient and family desires.
Toward Collective Medical Decision-Making
Futilitarians are working to replace the current medical system in which private health care decision-making between patient and doctor is sacrosanct with a legally enforceable collective standard of allowable—and disallowable—medical care. So admits Dr. Donald J. Murphy who heads up the Colorado Collective for Medical Decisions (CCMD), a futilitarian think tank that expects to distribute futile-care guidelines throughout the nation by 1999.
In an interview given during my research for Forced Exit, Dr. Murphy described the future he and other futilitarians envision: Health will be a community concept as much as an individual one, and will include other community considerations such as the need for "recreation and transportation." Doctors’ duty to their patients will be subsumed by their overarching responsibility to the collective. Consequently, the parameters of private health care decision-making will be limited to those choices considered appropriate by the community. (For example, according to Dr. Murphy, mammograms would be permitted for women in middle age but not for women who are elderly.) And when people reach certain predefined stages in life, in the infamous words about the elderly by CCMD co-founder, former Governor Richard Lamm, they will have a "duty to die and get out of the way."
Futile Care Theory has already poisoned Oregon’s Medicaid Program, the first in the nation to explicitly ration health care. The rationing program seeks to expand eligibility for Medicaid by cutting costs through limiting certain treatments. Here’s how the program works: A list was created consisting of 745 medical treatments. The lower the number, the more beneficial the treatment is deemed. Every two years, a cut-off line is determined based upon budget estimates. If the number of the treatment a poor person needs is below the cut off line, it will be covered by Medicaid. If it is above the cut off line, it will not be funded—which, of course, means that it will not be provided. In 1994, for instance, the cut-off number was 606. It is currently 578.
The number each treatment received in the rationing hierarchy was established, in part, by the kind of futilitarian political determination advocated by CCMD. The effect was to pit some poor, sick people against other poor, sick people. Not surprisingly, those with political clout generally did well, while the relatively powerless found their treatment needs excluded from coverage. For example, as initially proposed, curative treatment for late stage AIDS would have been excluded from coverage based on the futilitarian concept that such treatment is "ineffective." When the gay community learned of the plan, it organized and successfully maintained coverage for AIDS treatment. At the same time, lacking an organized political constituency, some late-stage cancer patients were excluded from coverage.
Considering the philosophy behind Futile Care Theory, it should come as no surprise that the Oregon Department of Health recently declared assisted suicide to be a form of "comfort care," a covered treatment in Oregon’s Medicaid rationing scheme. Thus does the ultimate death agenda which underlies futile care theory come full circle. Imagine the scenario: a poor Medicaid patient wants treatment not covered by the rationing plan. Denied desired care by the new bureaucratic rules, in desperation she turns to assisted suicide. No one ever has to see this as a killing. The woman’s early death is seen by the powers-that-be as best for her, her family, and the budgetary needs of Oregon’s Medicaid plan.
CCMD’s Dr. Murphy sees the coming battle over Futile Care as the key to the future ethics of American medicine. He is right. The 92 year-old woman mentioned at the top of this story who was initially denied antibiotics was eventually able to secure treatment that saved her life. But if Futile Care Theory is imposed on the American people through formally enacted guidelines and enforceable public policies, similar cases will not have equally happy endings. For if Futile Care Theory becomes the law of the land, health care decision-making will have little to do with personal autonomy—unless the choice is the politically correct one of choosing to die—but will become primarily a matter of "doctor knows best," with available choices limited by the dictates of the collective will. No problem for the young, healthy, and productive, but devastating for everyone else.
There is a term that aptly describes the health care system that futilitarians seek to impose upon us: medical fascism. Its implementation may be closer than you think.
Wesley J. Smith is an attorney for the International Anti-Euthanasia Task Force
and author of Forced Exit: The Slippery Slope from Assisted Suicide to Legalized Murder