AMA Issues Policy On Involuntary Denial of Lifesaving Treatment

By Dept. of Medical Ethics

On March 10 the Council on Ethical and Judicial Affairs of the American Medical Association, (AMA) the association's official body for establishing ethical guidelines, issued a policy for dealing with cases in which patients or their proxies want lifesaving medical treatment but their doctor or hospital instead wants to let them die. The policy generally emphasizes the primacy of patients' value judgments, and supports the right of patients whose health care providers want to deny lifesaving treatment to be kept alive as long as somewhere in the United States another provider can be found who is willing to treat them.

The "death with dignity" movement began by arguing that patients and their families should have the autonomy to make decisions about whether to receive life-sustaining treatment, and that "paternalistic" physicians should not be able to force treatment on, for example, a patient with a living will. For about the past decade, however, a growing number of doctors and "ethicists" have been arguing that, while patients should be able to choose to reject treatment and die they do not have an equal right to choose treatment and live. Many have advocated denial of lifesaving medical treatment even against the will of patients and their families if, in the words of Chris Hackler and Dr. Charles Hiller, the patient or family has "views about suffering and quality of life [that] differ substantially from those of most reasonable people."

It has long been accepted by pro-life ethics that when treatment is physiologically "futile," meaning that in reasonable medical judgment it would not in fact prevent the patient's death, even for a short time, a patient has no right to demand that a doctor or health care facility provide it. However, these doctors and ethicists have been stretching and distorting the concept of "futility" to include circumstances in which treatment likely would preserve life, but because of the patient's disabilities or condition the patient's quality of life would in their opinion be too poor to justify preserving the life, even though the patient or family disagree.

Increasingly, hospitals have been adopting policies to implement this view that health care personnel, rather than patients and their families, should be the ultimate judge of whether a patient's life is worth living. Alexian Brothers Hospital in San Jose, California, prohibits resuscitation of patients with "severe and irreversible dementia," such as many of those with Alzheimer's disease, despite the desire of the patient or family for resuscitation. Similarly, any request by an Alexian Brothers patient who needs intensive care as a permanent measure for assisted feeding or any treatment other than "comfort care" is automatically denied.

Houston, Texas, area hospitals publicly announced in summer 1996 detailed procedures to end the lives of disfavored individuals against their wishes. Under the Houston policies, when two doctors agree that a patient ought to die, but the patient (or, in the case of a patient incapable of making health care decisions, the patient's family or guardian) wants lifesaving treatment, the doctors provide 72 hours' notice. If the patient has not been able to arrange a transfer to another hospital willing to provide such treatment within that time, there is a hospital ethics committee meeting at which the patient or surrogate is allowed to plead for life, while doctors present the case for involuntary death. If the ethics committee decision is for death, there is no appeal, and even if there is a doctor with privileges at the hospital willing to provide lifesaving treatment, any further such treatment is prohibited. Treatment may not be provided while further efforts are made to secure a transfer. Under the standard policy, it is to be cut off immediately following the ethics committee decision.

In contrast to such policies, the new AMA Council guidelines speak of "giving priority to patient or proxy assessments of worthwhile outcome." If an institution is, after an internal process of consultation and consideration, still unwilling to provide treatment necessary to sustain the life of a patient when the patient or the patient's proxy wants lifesaving treatment, the AMA Council guidelines call for transfer of the patient to another institution willing to provide lifesaving treatment in accordance with patient/proxy wishes. Life-sustaining treatment could be terminated against those wishes only "if transfer is not possible because no physician and no institution can be found to follow the patient's and/or proxy's wishes."

The AMA Council report urges hospitals to adopt an approach that "insists on full and fair deference to the patient's wishes, placing limits on this patient-centered approach only when..., even after reasonable attempts to find another institution, a willing provider of the service was not found."

The AMA Council report is particularly strong in rejecting the use of "futility" policies to implement rationing. The authors of the Houston hospital policies wrote that "appropriate stewardship of institutional resources may be the basis in some cases for the judgment that provision of the disputed intervention is inappropriate." In diametric opposition to that position, the AMA Council report states, "Efforts to understand futility should not make use of resource saving criteria, and rationing needs should not motivate declarations of futility."

Public opinion strongly rejects the view that doctors should be able to force patients to die against their wishes or those of their family. According to a February 1999 national survey by Wirthlin Worldwide with a 3.08% margin of error, 79% of Americans say that a family should be able to choose life support for an unconscious patient even though the doctor thinks the patient's quality of life is too low. Nineteen percent say the doctor should be able to withhold life support, while 2% don't know.

"The AMA Council report, together with the poll results, should help persuade state legislatures throughout the country to protect patients from involuntary death by ensuring that lifesaving treatment is provided pending transfer to health care providers willing to respect a choice for life," said Burke Balch, J.D., director of NRLC's Department of Medical Ethics. "While there are aspects of the report that are questionable, its conclusion that patients who wish to live should be provided treatment pending transfer to a willing provider is welcome. It demonstrates that a key and highly influential representative of the medical profession recognizes that respect for patient autonomy must include respect for the choice to choose lifesaving treatment."

Five states (Maryland, Minnesota, Ohio, Oklahoma, and South Dakota) now statutorily protect the right to life-preserving treatment pending transfer, and legislatures in at least four others states (Arkansas, Florida, Virginia, and Texas) are likely to consider the issue this year.