A terminally ill patient generally should have the right to choose to die by refusing to submit to life-prolonging treatment without interference from lawyers, regulators or legislators, a presidential commission recommended yesterday.
"The wonders of modern medicine--antibiotics, resuscitation, intensive care, artificial kidneys and chemotherapy, for example--mean that for almost every life-threatening condition some intervention can delay the moment of death," said commission Chairman Morris B. Abram, a New York lawyer and former president of Brandeis University.
"Dying no longer takes place at home," Abram said. Once-private decisions are now made in public: 80 percent of Americans die in hospitals or nursing homes after substantial illnesses.
Too many cases, he said, are winding up in the courts or before legislators, "creating a new tension at the bedside."
After a two-year study entitled "Deciding to Forgo Life-Sustaining Treatment," the 11-member commission of doctors, theologians, lawyers and public policy experts found that:
* Health care professionals are unwilling to stop life-sustaining treatment once it begins. "There ought to be greater willingness to halt treatment once it is clearly futile than to fail to start the same treatment," Abram said.
* Medical care providers often exercise "misguided paternalism," said the study director, Dr. Joanne Lynn. Patients should be informed about their choices. They "want to know what they face."
* Patients suffering from permanent loss of consciousness should have the type of care they receive dictated largely by their family's wishes. This decision should include the use of respirators, antibiotics, or artificial feeding. "The law does not and should not require any particular therapies to be applied or continued," the report said.
The commission concluded that "justifying continuation of such costly and intrusive care as a respirator is exceedingly difficult," as is use of kidney dialysis equipment for a permanently unconscious patient who develops kidney failure.
* Resuscitation need not always be attempted on a hospitalized patient whose heart stops. When a patient is likely to suffer cardiac arrest, he should be so informed and given the chance to decide for or against resuscitation in advance.
* Patients should have greater rights to give advance directions about what they want done should they become incapacitated. This should include the power to appoint a "proxy" to carry out a patient's wishes.
* Immediate oversight of decision making should lie with the patient's physician. However, the commission urged hospitals to develop internal review mechanisms such as "ethics committees" to provide advice and oversee decisions involving incompetent patients. A commission survey found that just over 4 percent of the larger hospitals have such committees and only about 1 percent of hospitals nationwide.
* The commission called for a "very strict standard" to be applied to decisions affecting newborn babies with serious birth defects. Discontinuation of life-sustaining treatment is warranted only when permanent handicaps "are so severe that continued existence would not be a net benefit to the infant."
For example, Down's syndrome, which causes varying degrees of mental retardation, does not justify failing to provide medically proven treatment, such as surgical correction of a blocked intestinal tract, the commission said.
In this, the commission disagreed with the parents, a physician, and the state's highest court in the "Baby Doe" case in Bloomington, Ind., last year. In that case, food and medical treatment were withheld from a Down's syndrome baby.
The commission's "Baby Doe" recommendation also takes issue with a new Reagan administration rule designed to protect handicapped newborns. The regulation prohibits hospitals from failing to provide care and food to infants, requires the posting of a warning in hospitals, sets up a hotline for anonymous complaints, and threatens to withhold funds from hospitals that don't comply.
The panel warned that the rule was "likely to be ineffective and to lead to excessively detailed regulations that would involve government reimbursement officials in bedside decision making."
The panel that made the recommendations is formally known as the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Three of its members, including the chairman, were Carter appointees and the remaining eight were chosen last year by President Reagan.
The conclusions in the comprehensive 255-page report were unanimous, Abram said.
While not binding, the recommendations seek to provide guidance to patients, doctors and hospitals to lessen the "agony of decision" they face, said executive director Alexander Capron. He said that draft versions of the report are already being used in medical schools, hospitals and even in court cases.