Ethical Challenges Posed By
End-of-Life Care

The circumstances surrounding Terry Schaivo and six-month-old Knya Dismuke-Howard, both of whom died after being removed from life support, have fueled renewed debate over end-of-life care.

At stake are not just the individual lives of patients and their families but, argues a Rice University religious studies scholar, fundamental questions about what medicine means as a profession and practice.

“Medicine is historically and professionally committed specifically to extending life and curing patients,” says Andrew Lustig, director of Rice’s Program on Biotechnology, Religion, and Ethics. “But it’s still difficult for practitioners and, obviously, for patients to accept a terminal prognosis and shift their set of commitments from curing to caring.”

Part of this difficulty, Lustig believes, stems from the technological advances that have occurred in medicine and the need to re-examine a number of fundamental philosophical issues, beginning with the scope and nature of medicine. “Despite the dramatic improvements in clinical care and in current practices involving hospice care,” he says, “the medical profession is still a long way from providing a continuum of high-quality care as a person moves from a curative goal in intensive care to a palliative goal.”

In a chapter for the Handbook of Bioethics titled “Death, Dying, Euthanasia, and Palliative Care: Prospectives From Philosophy of Medicine and Ethics,” Lustig reviews the advancements in clinical medicine, specifically end-of-life care, that have led to the emergence of bioethics. He also offers an extensive analysis of the prevalent theories of bioethicists regarding key ethical issues confronting patients and physicians in either critical care or hospice settings.

Issues that are of vital ethical concern, according to Lustig, include distinctions between withholding and withdrawing life-sustaining treatment, physician-assisted suicide, what “dying naturally” means in a hospice setting, the principle of “double effect” traditionally espoused by the Roman Catholic Church, distinctions between “ordinary” and “extraordinary” treatments, and “quality of life” versus “sanctity of life.”
At the heart of many of these legal and ethical issues regarding a patient’s care, Lustig says, are the concepts of patient autonomy and the physician’s right to deny certain forms of care because they may be harmful or futile.

Ethicists, for example, generally draw a distinction between actively terminating a patient’s life and passively allowing the individual to die based on the patient’s decision and what would be identified as the cause of death. In the case of a patient on a respirator who wants to die, most ethicists would consider withdrawing that support justifiable because it’s the patient’s decision, and it would relieve the patient’s suffering. “Ethicists would consider such an action as a clear case of letting the patient die rather than killing the patient,” Lustig says, “because the cause of death is the underlying pathology of the lungs.”

In instances in which treatment is withheld or withdrawn, Lustig claims that the consensus among bioethicists is that either decision must involve the consent of the patient or surrogate. “This decision also must take into consideration the patient’s interests and a patient-centered assessment of the benefits and burdens of either initiating or continuing treatment,” Lustig says.

Patient autonomy, he explains, is not the sole determinant of what constitutes appropriate medical treatment. “Healthcare professionals may deny forms of care they deem harmful or futile,” he says. “As occurred in the case of the Dismuke-Howard child, who suffered from leukemia and multiple-organ failure, a physician’s judgments can sometimes run counter to the wishes of the patient or surrogate if the doctor believes the treatment is inappropriate or ineffectual.”

Above all, as doctors and patients face troubling questions about medical interventions at the end of life, the quality of the relationship between the doctor and patient is critical. Despite efforts to enhance communication between patients and healthcare professionals, Lustig believes a significant gap still exists between theories of doctor and patient relations and what really occurs. As an example, he cites the 1995 SUPPORT Project, the first large-scale study of dying patients in the United States. Researchers on the project concluded that, even after extensive efforts, attempts to improve the quality of information shared among patients, doctors, and nurses failed.