On the night of April 15, 1975, a 21-year-old woman stopped breathing after taking pills and drinking a large quantity of alcohol. She was revived but suffered severe brain damage. Her breathing was assisted by a respirator. Her prospects for survival were bleak, and her father asked the doctor to disconnect the respirator and allow her to die with dignity.
It could easily be the plot to an episode of "Medical Center," but such situations have led to a real-life drama currently playing in the courts and hospitals of Massachusetts. Due to recent technological and medical advances that enable doctors to keep patients on the brink of death alive and to treat with limited success the previously incurable, doctors and lawyers are for the first time tackling the question, "Who, if anyone, should pull the plug?" In the case of an incompetent patient--such as the very young, the unconscious, or the mentally retarded--who should take on the awesome responsibility of deciding whether to withdraw or withhold life-sustaining treatment?
The woman mentioned above was Karen Ann Quinlan. Her father's well-publicized petition to have her removed from the respirator was heard by the New Jersey Supreme Court in 1976. In a landmark decision, the court ruled that doctors and hospital ethics committees, acting in conjunction with family members, had the right to remove patients such as Karen from life-support systems without appeal to the courts.
But the courts of Massachusetts saw differently. The following year, in the case of Joseph Saikewicz, a severely mentally retarded patient who was dying of leukemia, the Supreme Judicial Court of Massachusetts delegated the courts find authority in the right-to-die decision, and touched off a heated battle between the legal and medical professions.
Both the courts and the doctors have always had a stake in protecting and preserving people's lives. Their competing claims to being the ultimate guardians of life sparked into conflict over the Saikewicz case. Doctors maintained the case simply involved a medical question, and it would be a dangerous precedent for courts to interfere with doctors' traditional autonomy in such matters. They argued that society has given the medical profession the responsibility of determining the efficacy of treatments and a patient's chances of survival, and thus they must be the ones to make the right-to-die decision.
But lawyers believed such a case, with no patient consent, was a legal matter. It involved one individual taking the life of another, and required the impartial weighing of all the relevant facts to determine what the patient would have wanted, which only a court can accomplish. The relevant facts would include expert medical testimony, the best estimates of the values and beliefs of the patient concerning medical care, and the pain that he would have to endure without knowing why.
In the Saikewicz decision, written by Justice Paul J. Liacos, the court rejected the conclusion of the Quinlan case. The court said:
We do not view the judicial resolution of this most difficult and awesome question--whether potentially life-prolonging treatment should be withheld from a person incapable of making his own decision--as constituting a 'gratuitous encroachment' on the domain of medical expertise. Rather, such questions of life and death seem to us to require the process of detached but passionate investigation, and decision that forms the ideal on which the judicial branch of government was created. Achieving this ideal is our reponsibility and that of the lower court, and is not to be entrusted to any other group purporting to represent the 'morality and conscience of our society,' no matter how highly motivated or impressively constituted.
The court added that it "recognized a general right in all persons to refuse medical treatment in appropriate circumstances," based on the constitutional right to privacy which modern courts have interpreted in the last 15 years. It also accepted the current ethical practice that providing comfort for a dying patient is often in his own best interest.
To weigh the individual's right to privacy and human dignity versus the state's interest, the court established itself as the chief decision-maker, with the help of a court-appointed guardian.
"Most doctors are very much opposed to this," Dr. Arnold S. Relman, professor of Medicine and editor of the New England Journal of Medicine, says. 'This is an area where the courts have no business operating." Any danger of a family disregarding the best interests of the patient can be avoided by requiring second and third opinions, he added.
"There is no case that a judge and lawyers could handle any better than doctors," Relman says, noting, "the adversary climate of the courtroom is not geared at getting at the best medical decision."
Alan A. Stone '50, professor of Law and Psychiatry, concurs. He says there is no way that the "court can give more enlightened efforts" than doctors, and that relying on the courts "is an incredibly laborious process," which is not conducive to the "moment-to-moment" decisions that medicine often requires.
But, Stone still feels that the Saikewicz decision was a good one. "I think this was necessary in an historical sense," Stone says. "Doctors were not aware of the moral and ethical issues involved," in making the decision whether or not to withhold treatment. Stone feels that the Saikewicz case forced doctors and nurses to confront these issues.
But Stone added that doctors misinterpreted the Saikewicz decision: "The way Saikewicz was read by the medical profession was that they had to go full steam ahead in keeping people alive." He says that it is "inevitable" and "appropriate" that cases will now arise narrowing the applicability of the Saikewicz decision.
Dr. Mitchell T. Rabkin '51, general director of Beth Israel Hospital and associate professor of Medicine, says, unlike most of his colleagues, that "the Saikewicz decision was a wise one." But he, too, feels that doctors read the ruling too strictly--that every time one wants to withhold treatment from incompetents, one must seek the court's approval. Rabkin feels this is not appropriate for a dying patient.
A lower court has gone ahead and clarified the Saikewicz case in last year's Shirley Dinnerstein decision. On June 30, 1978, the Massachusetts Appeals Court ruled that Saikewicz dealt with a case where there was a reasonable chance of prolonging or saving life; in the case of Dinnerstein, however, treatment would have been "a mere suspension of the act of dying," the court said. The case of a patient near death such as Dinnerstein presented "no significant treatment choice or election" because "attempts to apply resuscitation, if successful, will do nothing to cure or relieve the illnesses which will have brought the patient to the threshold of death."
The court became the first in the nation to uphold the withholding of emergency treatment from irreversibly, terminally-ill in-competent patients who suffer caridac or respiratory failure. The decision held that doctors have the final say on the right-to-die of these patients.
As Rabkin comments, "It said, 'look fellows, you practice medicine.'" Doctors now feel free to treat terminally-ill incompetents without court interference and they are relatively free to define irreversible terminal illness. Yet, a survey of practices in local hospitals reveals that the Saikewicz experience has served its purpose in making hospitals and doctors more careful about the right-to-die decisons.
Beth Israel Hospital is working on "articulation of our own policy," according to Rabkin. It is trying to determine criteria for competence, and incurable illness. And the hospital staff is closely examining the decision process, "bending over backwards" to preserve the rights of patients and to consider opinions which "cannot be dismissed." In most cases the hospital will respect the wishes of the family, except when "the family asks for something medically unrealistic," Rabkin says.
Massachusetts General Hospital (MGH), according to Martin S. Bander, deputy to the general director, has established two categories of incompetent patients--those who are "imminently, terminally ill" and those who are terminally ill but for whom death is not imminent. The definition of imminence is dependent on a "combination of circumstances depending on the illness," Bander says.
For the first type of patient, for whom death is thought to be imminent, it is possible to stop treatment if the family wishes. For the other type of patient, MGH still resorts to the courts if the doctor and family feel the patient should be "treated selectively rather than aggressively." In all situations, the family's wishes are respected and heeded despite disagreement with a doctor.
So, it now seems that doctors are using the court rulings as guidelines in making their decisions. But not everybody is satisfied. The suspicions of lawyers and doctors are still apparent. "The better solution is to have a system of review which involves some people other than those involved in the case," Stone says.
And Relman adds, "I think in this whole series of court cases, doctors have been made more cautious, and that is not necessarily a good thing." He adds that "the emphasis is in the wrong place here." He feels courts can play a role in ensuring that doctors act responsibly, by maintaining high standards in performance and education. "Doctors are the people whom society ought to be able to count on to consider the welfare of the patient. And if not, they ought to be held accountable," Relman says.
The debate between doctors and lawyers threatens to heat up once again as a more significant case looms on the Supreme Judicial Court's docket. The court is scheduled to hear oral arguments in September in Hall v. Myers, a case that deals with the appropriateness of euthanasia for any patient, competent or incompetent. It involves a prisoner on renal dialysis who wanted to stop his treatments and be allowed to die. The Suffold Superior Court has ruled that the prison commissioner could force the prisoner to keep taking his life-saving treatment.
The Supreme Judicial Court will now have to develop a balancing test to determine when the individual's right to privacy outweighs the state's interest in preserving the sanctity of human life. And the court must once again address the prickly question, who should pull the plug? Should the court provide doctors a guideline for dealing with patients who refuse treatment, or should it require adjudication of all right-to-die cases? The court's answer could lead to another stormy chapter in the effort to resolve the dilemma that Karen Ann Quinlan first triggered.