On Consenting To, but Not Seeking, Death

On Consenting To, but Not Seeking, Death

by David Barnard PhD

Center for Bioethics and Health Law, University of Pittsburgh

Did James Michener commit suicide? The popular and prolific author died of complications of renal failure on October 16, 1997, a few days after insisting that his doctors discontinue his kidney dialysis treatments. The report of Michener's death in the New York Times quoted a longtime friend and assistant as explaining, "He felt he had accomplished what he wanted to in terms of his life's work. He did not want to suffer a long series of complications." Michener was approximately 90 years old.

What if James Michener had not required kidney dialysis to maintain his life, but still feared a future of increasing disability and decrepitude, and asked his physicians to help him avoid that future by administering a lethal dose of drugs? Most people would agree that a physician who complied with this request would be engaging in physician-assisted suicide, which is presently illegal everywhere in the world with the possible exception of the state of Oregon. Since the result is exactly the same--Michener is now almost certainly dead sooner than he otherwise would have been--why should it make any difference, morally or legally, that his actual death followed his doctors' agreement to stop his life-prolonging dialysis, rather than their complying with his request for the drug?

The Second Circuit Court of Appeals issued an opinion in 1996 (Quill v. Vacco) that stated that it should not make any difference. In fact, the Court asserted, it is not only unfair but unconstitutional to permit some people to end their lives by declining life-prolonging medical treatments while prohibiting other people with similar desires (but who are not dependent on artificial life-support) from ending their lives with the active intervention of a physician. In both cases it appears that the physician has introduced a specific cause of death, independent of the fatal outcome that will ultimately result from the patient's medical condition. And in both cases (presumably) the patients prefer death to life. To be consistent and to assure equal protection of the laws, the Second Circuit Court argued, the State of New York (where this Court has jurisdiction) must either permit both sorts of death, or prohibit both. Bioethicists such as Dan Brock and Howard Brody, and commentators such as Marcia Angell, the Executive Editor of The New England Journal of Medicine, make precisely this point to support their arguments that physician-assisted suicide should be legalized.

On June 26, 1997, The United States Supreme Court ruled unanimously that the Second Circuit Court of Appeals was wrong. Citing 34 other court rulings from across the United States, as well as laws in almost every state, the Supreme Court decisively upheld the distinction between refusals of life-prolonging medical treatment and suicide, concluding, "By permitting everyone to refuse unwanted medical treatment while prohibiting anyone from assisting suicide, New York follows a longstanding and rational distinction." Moreover, the Court added in a footnote to its opinion, palliative treatments such as aggressive pain relief or sedation that accompany decisions to forego life-sustaining treatment are permissible if "based on informed consent and the double effect." Thus, "just as a state may prohibit assisted suicide while permitting patients to refuse unwanted lifesaving treatment, it may permit palliative care related to that refusal, which may have the foreseen but unintended 'double effect' of hastening the patient's death." (For an excellent summary of these opinions, see George Annas, "The Bell Tolls for a Constitutional Right to Physician-Assisted Suicide," New England Journal of Medicine, 337(15):1098-1103, October 9, 1997.)

Does the Supreme Court's argument imply that a patient's insistence on discontinuing life-supporting treatment (for example, artificial nutrition or hydration, mechanical ventilation, or kidney dialysis) could never be an instance of suicide or assisted suicide? Clearly not. A person could demand an end to such treatment with the same intention as would motivate him or her to step in front of a train. Nor would it be a legitimate defense to a charge of murder to claim that removing a person from life-support (in order, say, to silence a witness to a crime) was simply respecting that person's right to refuse medical treatment. Intent matters, in morality and in criminal law. And the question of intent is the central concern in differentiating treatment refusals from assisted suicide or euthanasia.

When a critically ill patient refuses further life-sustaining treatment, it is usually because the treatments are not likely any longer to accomplish their goal, or because their continuation imposes greater burdens than can be justified by the benefits to be gained. We respect the patient's wishes in order to spare him or her from those no-longer-useful treatments, and to free him or her from those burdens. Suicide and euthanasia, by contrast, are acts specifically intended to end the patient's life. In the case of continuous sedation the primary intent is to alleviate symptoms and the patient's subjective experience of distress. The foreseeable but unintended side effect of the patient's earlier death is not, in and of itself, sufficient to classify continuous sedation as an act of euthanasia or assisted suicide.
Besides intent, two other aspects of treatment refusal or withdrawal help differentiate these acts from suicide or euthanasia. One is the right to be left alone. The patient who refuses further life-sustaining treatment is expressing the negative right to be left alone: to set limits to the power of others to enter his or her body or direct his or her life. This right to be left alone is the primary meaning of "autonomy" or "self-determination" as these concepts have been employed in the common law and in bioethics for the past century. Yet a request for assisted suicide or euthanasia is a positive request for a direct intervention by the physician, and to deny this request does not override the patient's autonomy. The second aspect is the possibility for continuing care. The decision to withhold or withdraw treatment can usually be reconsidered and sometimes reversed. Euthanasia, by definition, is irreversible and usually immediate (unless someone has bungled). Moreover, with patients who have refused further life-prolonging treatments there are almost always opportunities to continue acts of comfort and supportive care. Even when a patient is under continuous sedation, caregivers and loved ones may still attempt to communicate their tenderness, presence, and love.

Underlying all of these distinctions, I believe, is the difference been seeking death--which is what one does who requests assistance in suicide or euthanasia--and consenting to death--which is what one does who acknowledges that the frailty and transience of our physical bodies are inevitable and universal facts of human existence, and that a time comes when resistance against them no longer serves a meaningful purpose. Death under these circumstances is acceptable, even at times welcomed, but not sought, and not without sadness at losing life's sweet savor.

I lived these very distinctions with my own mother's death just over one year ago. At the age of 86, after six years of kidney dialysis as one of many late complications of diabetes, my mother suffered a debilitating stroke and, while in the hospital, she developed intestinal obstruction. Her physicians recommended some exploratory procedures, but my mother refused. This was one fight too many for her. She loved her life, she loved the very sight of her family, but at this point the prospect of uncomfortable studies or procedures was more than she was willing to endure even for those deep pleasures. Having decided this, it made no sense to anyone to continue with her dialysis. Soon, as a result of the morphine that was (at last!) administered for her abdominal pain and to ease her breathing after stopping the dialysis, my mother was resting comfortably. She roused herself during a visit from her rabbi and said good-bye to all of us. Then she slept.

As I sat with her over the next, and final, thirty-six hours of her life--talking to her, playing opera arias on the tape player, holding her hand--I asked myself (ever the intellectualizing bioethicist) whether Dan Brock, Howard Brody, and Marcia Angell were right after all--that is, whether it really would make any difference if we sped up the morphine so my mother would die immediately, rather than waiting for the drugs, or the uremia, or the dehydration, to take their course. In fact, wouldn't that have been the way to honor my mother's true wishes? I don't think so. My mother did not want to die, even though she was willing to die rather than fight against the odds for the life she had left to her. Our role was to keep her company and wish her a sad and fond farewell.