Our discardable people

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. -Christoph Wilhelm Hufeland, a German physician, in 1806

Assume you are dying of cancer and do not want CPR (cardiopulmonary resuscitation) should you go into cardiac arrest. You issue written instructions to your doctor and family telling them that when the time comes, you want to be allowed to die naturally without medical intervention. Since each of us enjoys the legal and ethical right to refuse unwanted medical treatment, your desire should be followed as a matter of protecting patient rights and respect for personal autonomy.

Now assume the same scenario, but rather than eschewing medical intervention, you want CPR in the hope that it will gain you a few extra weeks of life. Consistency and the principle of personal autonomy demand that this decision receive equal respect. After all, "choice" is choice, right?

Not necessarily. Increasingly, when it comes to end of life care, patient autonomy is sacrosanct only if the choice is to refuse treatment and die. The decisions of people who want to accept treatments such as CPR, antibiotics, ventilator, or blood transfusion in order to stay alive, are increasingly viewed by medical ethicists and health care cost utilitarians as "inappropriate." Under this philosophical construct, known generically as Futile Care Theory, your "inappropriate" desire for CPR should-some would say must-be refused since it conflicts with the ethical values and moral beliefs of health care providers (and not coincidentally health financing imperatives).

Welcome to the surrealistic world of biomedical ethics, where "futilitarians" are actively redefining the role of doctors, the ethics of health care, the perceived moral worth of sick and disabled people, and the power of patients over their own bodies. Its proponents see Futile Care Theory as a way to control costs, protect the "integrity" of health care professionals "demoralized" by having to treat hopelessly ill people, and prevent "unnecessary" suffering at the end of life. In the words of Susan Fox Buchanan, executive director of the Colorado Collective for Medical Decisions (CCMD), a futilitarian think tank (although Buchanan dislikes the term), Futile Care Theory is about "facing limits on our mortality, on our technology, our community relationships with each other and our responsibility for stewardship of shared resources."

Lurking just beneath these feel-good concepts lies futilitarianism's ultimate agenda: to instill in the nation a collectivist notion of "health care justice" by refusing medical treatment to people who are dying, who are elderly, who are disabled-all the most vulnerable and defenseless among us-for the benefit of the young, the vital, the productive, the able-bodied and the healthy-people seen by futilitarians as worthier recipients of "limited resources." Futile Care Theory is the first step, the proverbial foot in the door, that opens up the traditionally individualistic health care system to mandatory "community" control.

Futile Care Theory has been an increasingly hot topic in biomedical ethics and medical journals and at seminars and professional forums. Drawing little attention from the mainstream media and the general population, futilitarians have hewn a rough consensus that personal autonomy is limited to the right to say no to unwanted medical treatment, and that care deemed inappropriate by medical professionals can and should be denied to patients in the clinical setting-regardless of patient desires.

Defining Futile Care

One would think that such a profound alteration in medical ethics and morality would require much public discussion and democratic dialogue. Indeed, futilitarians usually give lip service to the need for achieving community consensus on these issues. For example, the authors of a February, 1994, article in the Journal of the American Medical Association (JAMA) titled "Beyond Futility to an Ethic of Care," stressed that in implementing Futile Care Theory, "the emphasis should be on allocating treatments and limiting costs according to principles of justice arrived at through open society debate." But futilitarians are not waiting for society to give its consent; they are already surreptitiously implementing official futile-care protocols in hospitals and medical associations' ethical guidelines. Traditional access to end-of-life care is already being restricted and most people don't even know it is happening.

So, just what is futile care? Even futilitarians don't always agree. Amy Halevy, MD and Baruch A. Brody, PhD., two futilitarians writing in the August 21, 1996 JAMA, were unable to define it but claimed, "we know it when we see it." The bioethicist Daniel Callahan offered several vague definitions in his 1993 book, The Troubled Dream of life, among them that a presumption for non-treatment should exist when "there is a likely, but not necessarily certain, downward course of an illness, making death a strong possibility." Others define treatment that "prolongs the dying process" as futile. The American Thoracic Society says treatment is futile "if reasoning and experience indicate that the intervention would be highly unlikely to result in a meaningful survival for the patient," and further opines that a "health care institution has the right to limit a life-sustaining intervention without consent . . . based on the ethical principle of medical triage," a process which weighs "the severity of illness, the type and certainty of prognosis, and . . . the extent of benefits reasonably expected for a given patient compared with the burdens to that patient." However defined, current futilitarianism emphasizes the subjective value that health care professionals place on the lives of dying and disabled people rather than the values and ethics of the patients and/or surrogates themselves.

It wasn't always so. Futility used to be primarily an objective concept. Doctors have never been under a duty to give treatment with no physiological value to the patient, nor should they be. Prescribing antibiotics for a viral infection is a good example of a futile treatment, albeit a common one. While effective against bacterial infections, antibiotics are useless against viruses. Moreover, giving antibiotics to people with a viral infection can kill beneficial bacteria in the body and lead to antibiotic-resistant bacterial strains.

But this objective definition of futility is not what primarily concerns Futile Care theorists. Futilitarianism is concerned more with utilitarian determinations about the quality of patients' lives rather than with the likelihood that a treatment can produce an objective physiological benefit. For example, a common "treatment" futilitarians want withheld, regardless of patient or surrogate desires, is tube-supplied food and fluids for people diagnosed in "a permanent vegetative state" (PVS). Never mind that PVS is a notoriously misdiagnosed condition and that a study published in the June 1991 Archives of Neurology found that 58% of patients with a firm PVS diagnosis recovered consciousness within three years! Ironically, nutritional support is labeled inappropriate by futilitarians not because it doesn't work but precisely because it provides a demonstrable physiological benefit, i.e., it keeps the body nourished and functioning. Thus, it isn't the treatment, but the patient who is deemed futile, since he doesn't have a life worth living or worth spending resources upon.

Two primary approaches are currently used in the clinical setting to determine whether treatment should be withheld as futile. Let's call them "process futility" and "categorical futility." Process futility is obsessed with procedure. Reflecting the mores of current biomedical ethics culture, it assumes that if participants go through an agonizing process, they must be doing the right thing. Thus the primary emphasis among process futilitarians is the method used to determine who should be denied care. Non-treatment decisions are made on a case-by-case basis, using predetermined administrative processes.

Such administrative non-treatment decision-making is already taking place in some Houston hospitals. The August 21, 1996 JAMA article mentioned above described the futile care policy created by a collaboration of area hospital ethics committees so that "professional integrity and institutional integrity" would serve as a counter balance "to patient autonomy." The Houston Policy creates an eight-step "conflict resolution mechanism"essentially an adversary system between doctors and patients-to resolve disputes in which patients or family members refuse to accept a doctor's decision that continued treatment (other than comfort care) is "inappropriate." If the institutional procedure is followed, the hospital itself has the final-say in withholding or withdrawing "a medically inappropriate intervention. . . without obtaining the agreement of the patient (or surrogate decision maker)." Here's how the Houston process might work in real life:

Assume your seventy-five-year-old grandmother, already partially disabled by a stroke, is transferred from her nursing home to the hospital with a high fever and breathing difficulties. She is very ill and chances of her survival are estimated to be 25 percent. The doctor decides that giving her antibiotics and respiratory assistance is "futile," because in his opinion, even if she lives, she will never regain a quality of life which would be of benefit to her, thus not justifying the depletion of institutional resources.

You protest. Your grandmother has told you she is content with her life and that she wants treatment no matter how ill she becomes.

Unable to pressure you into cutting off care, her doctor initiates the next phase of the process by bringing in nurses, chaplains, social workers or other hospital "resources" to attempt to resolve the dispute. You are told you are causing your grandmother unnecessary suffering and are otherwise pressured, cajoled, and pleaded with to follow the doctor's advice. You still refuse to give in. A second doctor is brought in to examine your grandmother and render an opinion. She agrees that treatment is "inappropriate." The hospital ethics committee is then contacted and a formal hearing to resolve the dispute is scheduled.

The hearing is held seventy-two hours later. You appear and explain why you want treatment to continue. The doctor and others explain why they believe the treatment is futile. The ethics committee takes a secret vote and sides with the doctor.

Your grandmother's treatment is about to be stopped. You are now left with two options. Under the hospital's protocol, you can accept the decision and make sure your grandmother receives comfort care until she dies, using a different doctor within the hospital if you desire. Or, you can transfer your grandmother to another hospital, assuming you can find one willing to accept responsibility for her care.

In desperation, you speak with another doctor. You are thrilled when he agrees to provide the desired treatment in the hospital. You ask that responsibility for your grandmother's care be transferred to the new doctor. You are refused. The ethics committee has ruled. Under the hospital's futile care policy, any further treatment other than comfort care in the hospital is now forbidden. There is no appeal. Treatment is withdrawn.

Your grandmother is now too weak to move to another hospital, even if you can find one willing to accept her care. You hold her hand as her temperature rages at 105 degrees. She becomes delirious and soon expires. You are left with the bitter feeling of having been abandoned and betrayed.

Category futilitarians get to the same place-the denial of wanted care-- through a somewhat different route: defining the afflictions for which treatment is to be deemed futile. The desire here is to bring consistency into futile care decision making, garner obedience from patients and families who may be less likely to resist futility determinations if they are based on pre-established rules and at the same time, "comfort" families with the knowledge that the futility determinations are not personal rejections. A Categorical Futility policy (Non-beneficial Treatment) was instituted in February 1997 at the Alexian Brothers Hospital in San Jose, California-a Catholic institution. Its stated purpose: "to promote a positive atmosphere of comfort care for patients near the end of life" and to ensure that the dying process not be "necessarily prolonged"-a determination to be made by the hospital, not patients or families.

The Alexian Brothers Policy creates the presumption that requests for medical treatment or testing, including CPR are "inappropriate" for a person with "irreversible coma, persistent vegetative state, or anencephaly;" "permanent dependence on intensive care to sustain life;" "terminal illness with neurological, renal, oncological or other devastating disease;" "untreatable lethal congenital abnormality;" and "severe, irreversible dementia." The only care such patients are entitled to receive is comfort care.

Doctors who wish to provide "inappropriate" treatment in contradiction of the policy's guidelines must "provide written justification." Hospital personnel are urged to report doctors who violate the guidelines by providing inappropriate treatment such as "antibiotics, dialysis, blood tests, or monitoring," to the hospital's medical director. The punishment for deviation from the policy is unmentioned, but the one club any hospital holds over doctors is the suspension or withdrawal of staff privileges.

Even though the Alexian Brothers policy defines the conditions for which continued medical treatment is deemed inappropriate, bureaucratic process remains important. If the patient or family "insists on continuing 'inappropriate' treatment after being advised that it is non-beneficial," the case is sent to the biomedical ethics committee. "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 suspects that the care will be denied despite patient and family desires.

The Emerging Power of Hospital Ethics Committees

Both the Houston and San Jose Alexian Brothers policies illustrate the growing power of hospital biomedical ethics committees: a dangerous development for anyone interested in protecting patient rights. Originally designed to give informal advice in difficult situations, hospital ethics committees have in recent years been given tremendous power, including, in some hospitals, power over life and death in futile care controversies.

Despite this awesome responsibility, ethics committees have few checks or balances placed upon them. Membership is anonymous. Deliberations are confidential. There are no uniform criteria for membership and no standardized training or education. No written record is kept of committee deliberations. There are no performance reviews or opportunities for appeal. Individual members generally cannot be questioned later in court about their assessments and conclusions. The potential for abuse due to prejudice, inadequate information, ideological zeal, or incompetence, is mind boggling.

Recent litigation over the continued treatment of a Lodi, California, man named Robert Wendland illustrates the power and secrecy of ethics committees, though Wendland himself is not a futile care case. Wendland's brain was severely damaged in an auto accident. He was unconscious for 16 months but then awoke and improved to the point where he was able to maneuver a wheelchair down a hospital corridor and eventually use yes and no buttons to answer simple questions. Robert's wife, Rose Wendland, decided to remove his feeding tube because, she claimed, he would not want to live in a profoundly dependent state. Rose's decision was supported by Robert's doctor and referred to the Lodi Memorial Hospital Ethics Committee, which quickly and unanimously assented to the dehydration.

An anonymous whistle blower, upset about the plan, warned Robert's mother, Florence Wendland and sister, Rebekah Vinson, about the pending dehydration. The two immediately sued to save his life.

The bitter litigation raged for more than two years, during which the ethics committee's opinion became a major issue. Rose's attorney repeatedly argued that the ethics committee's unanimous approval should serve as a basis for the judge to permit the dehydration to proceed. Yet, nurses who were in charge of his care and who opposed the dehydration were not called before the committee to give their opinion. Nor were Florence or Rebekah asked to present to the committee the reasons why they believed Robert should not be dehydrated.

Janie Siess, Florence and Rebekah's attorney, issued a subpoena to have committee members appear in court to testify about the recommendation. But the judge granted Lodi Memorial Hospital's request to quash the subpoena to keep the identities of the members and the processes of the committee confidential. Thus, the ethics committee decision was used in court to support dehydrating Robert while Siess was denied the opportunity to examine the committee's deliberative processes or cross examine members to determine the rationale behind their decision.*

Hospital ethics committees exercise tremendous power but their members do not necessarily reflect the types of people about whom they are asked to make futile care determinations. The poor, minorities, and those with disabilities are generally not members of ethics committees, yet these are the very people whose lives tend to be devalued by greater society. (Disability rights activist Diane Coleman, a leader in the Independent Living Movement and founder of Not Dead Yet, an anti-assisted suicide group, tells the story of the time she was invited to speak to a Michigan conference of ethics committee members. She asked the attendees how many of their respective ethics committees had anyone on them with a disability. Only two people out of about seventy raised their hands.)

Another point to consider: ethics committee members, though they may act in good faith, are akin to grand juries; they can only work with the information they are given. In futile care disputes, information presented to committee members will be controlled primarily by powerful professionals seeking to cut off care, backed by resource-conscious administrators, opposed by distraught and fearful family members, some of whom will have little education and may not even speak English. Their pro-treatment attitudes may well be dismissed as irrational, emotionally based, and/or driven by guilt or feelings of obligation. Given the god-like status accorded doctors, such disputes are loaded against the families.

This is all the more worrisome because several studies conclude that physicians, in the words of an article published in a Spring 1993 Journal of Clinical Ethics, "often underestimate their patients' perceived quality of life" and are limited "in their ability to be empathetic-that is to imagine their patients' feelings and ideas." Moreover, the data suggest that "physicians actually project their own personal preferences for lifesaving treatments onto their patients." Thus, the actual practice of Futile Care Theory is likely to devolve into something of a lottery, with some receiving wanted end-of-life treatment and others denied it based on their physicians' desires for their own end of life care.

The Early Cases

Futilitarianism has already cut a destructive path through some patient and family lives. People have been taken off respirators without consent. Nursing home residents have had DNR orders placed on their medical charts without authorization. Parents have been reported to authorities for child abuse because they have insisted on life support for prematurely born infants. In Flint, Michigan, a court stripped the parents of Baby Terry of the right to make their child's medical decisions solely because they refused to accept the doctors' determination of futility-the court favored an aunt who agreed to permit the treatment to be withdrawn. (If futility guidelines had been in place, the court action would have been superfluous; the doctors simply would have done as they pleased.)

A case in Spokane, Washington demonstrates just how dangerous Futile Care Theory really is. On October 27, 1994, Baby Ryan was born prematurely at 23 weeks gestation. He was put on dialysis but the doctors determined that continuing treatment was futile and they removed him from kidney dialysis over his parents' objections. (It may not be a coincidence that Ryan's parents were poor and on Medicaid.) Ryan would have died had his parents not obtained a court order to continue his treatment. That led the hospital administration to turn the parents in to protective services for child abuse. When that tactic didn't fly, administrators and doctors fought the parents in court, swearing under oath that "Ryan's condition is universally fatal" and that the infant had "no chance" for survival, contending that Ryan's continued treatment was futile and a violation of their integrity, values and ethics. The court never decided who had ultimate say over Ryan's care-his parents or the hospital-because his treatment was transferred to Emanuel Children's Hospital in Portland, Oregon, where he was soon weaned off dialysis and survived. Had his original doctors successfully imposed their futile care philosophy on their patient and his parents, Ryan would be dead instead of a living three-year-old child.

The Broader Agenda

Ironically, imposing Futile Care Theory into end of life medical care will not provide significant health care cost savings. Contrary to the popular view, care for the dying only consumes approximately 10% of health care expenditures. Much of this cost is for treatment before the end of life is reached and for comfort care, which is not considered inappropriate by futilitarian theorists. Thus, in 1994, Drs. Ezekiel Emanuel and Linda Emanuel wrote in the New England Journal of Medicine, "at most," the percentage of health care resources that would be saved by "reducing the use of aggressive life-- sustaining interventions for dying patients [is] 3.3%."

With so little benefit and so much potential harm, what is the point of futilitarianism? By focusing first on end-of-life care in the (probably accurate) belief that Futile Care Theory will pass relatively easily into routine clinical practice, bioethicists hope to establish a new controlling principle of health care that would transform the current individualistic system into one founded upon so-called "community standards." Once the country accepts the idea that "the community" has the right to limit individual health care decision making in the name of a more "equitable" distribution of "finite medical resources"-the overarching justification underlying Futile Care Theory-the door will be opened to collective control on a far broader basis.

What new policies could we expect in such a collectivist health care system? Rationing-that is, denying undeniably beneficial medical treatment to people based on "relevant characteristics" such as age, disability, or perhaps upon previous lifestyle choices (i.e. smokers might be denied aggressive treatment for lung cancer that would be available to nonsmokers). Indeed, rationing is already very much in vogue among some within the medical intelligentsia and some rationing scheme would most likely be introduced into clinical practice close upon the heels of widespread acceptance of Futile Care Theory.

Another idea under active discussion among health care policy makers, is a dramatic redefinition of the concept of the term "health." Many biomedical ethicists support the idea that health should be considered primarily a community concept rather than an individual one. Once so redefined, health care resources would be redirected away from the treatment of individuals and into public health initiatives designed to keep the general populace healthier. Imagine cancer patients being denied a second round of chemotherapy to free up money for clean needle exchange programs or ads teaching the dangers of fatty foods all to allocate "limited resources" for the good of the community even if individuals must suffer. This may sound alarmist, but the radical notion that resources should be directed away from individual care and into public health initiatives has already been urged by the influential bioethicist Daniel Callahan, in his new book False Hopes.

It is often said that a society is judged by the way it treats its weakest and most vulnerable members. Futile Care Theory threatens to devolve the traditional values and ethics of our medical system into a stark utilitarianism, designed and controlled by medical elites, who have discarded the once self-- evident truth that all human beings have equal inherent moral worth. In such a world, the worst fears of Christoph Wilhelm Hufeland, expressed so long ago will have come to pass: the physician will indeed become "one of the most dangerous persons in the state."

* The judge eventually ruled that current California law did not permit him to order the dehydration of a conscious cognitively disabled person. The decision is expected to be appealed.

Wesley J. Smith, an attorney for the International Anti-Euthanasia Task Force, is the author of Forced Exit: The Slippery Slope from Assisted Suicide to Legalized Murder (Times Books).

Copyright Human Life Foundation, Incorporated Summer 1998
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