At some time in their lives, most people will be called on to play God
–either for others or for themselves.
High-technology medicine has so profoundly altered the life-beginning and life-ending processes that more and more people are being forced to decide whether loved ones should continue to receive extraordinary care or be permitted to die.
Many Americans are facing agonizing decisions, such as what to do with a severely handicapped newborn or a comatose, vegetative or severely demented adult.
And millions of Americans, repelled by the possibility of dying attached to machines, are drawing up ”living wills,” which assert that they do not want heroic but futile medical care if they become hopelessly ill.
High-tech medicine, which makes it possible to keep bodies alive after brains have died, has swept the nation as close as it has ever come to condoning euthanasia. Some experts believe the floodgates against mercy killing have been opened.
”Euthanasia is no longer a threat to be feared in the future,” said James Bopp Jr., lawyer for the National Right to Life Committee, an anti-abortion group also concerned with premature termination of life. ”It is currently being practiced in the U.S. with the approval of courts around the country and with the approval of certain people in the medical profession.”
The moral debate centers on a critical question: Is it acceptable, ethically or legally, to discontinue artificial feeding for permanently comatose or vegetative patients?
An emerging consensus from the legal and medical communities says that it is.
In March, the American Medical Association released a landmark policy statement on the issue. The AMA said it was ethical for doctors to withdraw all life-prolonging treatment, including tube feeding, from patients who are irreversibly comatose, even though death may not be imminent.
The AMA previously held that the withdrawal of such treatment was permissible only when a patient was expected to die at any moment.
The new ethical challenge comes less than 10 years after the nation agonized over the withdrawal of artificial breathing machines from
irreversibly ill patients.
Karen Ann Quinlan was the first to have her breathing apparatus legally disconnected, but she continued to live in a comatose state for more than nine years, sustained on artificial feeding.
The question over withdrawing feeding is far more acute, because it seems to counter a basic human tenet of providing food and water to the ill.
And if it is allowed in some cases, will it be allowed in even more?
If feeding can be withdrawn from patients who are vegetative, who feel no pain and have no hope for recovery, can it be stopped for nursing home residents who are mentally incompetent but still have a feeble conscious link to the world?
As the elderly population grows and the ability to prolong life continues, society will face an enormous problem of what to do about the increasing number of mentally incompetent aged. Ten percent of the people older than 65 have some degree of dementia, and the proportion is 20 percent for those older than 85.
Until about 10 years ago, medicine was unable to routinely keep dying patients alive indefinitely by tube feeding. Today there are an estimated 70,000 to 100,000 people nationwide hooked up to artificial nutrition devices in nursing homes, at a cost of $3,000 to $110,000 each a year.
Among these are 10,000 patients in persistent vegetative states, or irreversibly comatose, being kept alive by tube feeding. Once the medical machinery is in place, many doctors and relatives believe that they are morally and legally ”stuck” and can never stop it.
”The patient is reduced, really, to being essentially nothing but a cog in that machine,” said Rev. John J. Paris, a theologian and ethics consultant at Holy Cross College and the University of Massachusetts Medical School.
”If in fact that were true, we would have devised the ultimate Frankenstein monster: The machine now takes over, and our capacity to assess and evaluate its usefulness would cease,” Father Paris told a national conference on medical ethics this year.
But clearly, the tide is turning against such an approach. In addition to the AMA statement, there have been several court rulings in the last two years affirming that it is legal and ethical to withdraw tube feeding from such patients.
Recent decisions also have reaffirmed the right of patients to refuse such care.
And last month, the U.S. Supreme Court struck down the controversial
”Baby Doe” regulations, thereby blocking efforts of the Reagan administration to force hospitals to provide nutrition and heroic medical care to severely handicapped newborns whose parents have requested that the treatment be withheld.
These issues are increasingly ending up in court, in part because doctors and hospitals balk at taking life-threatening actions without judicial sanction. They are afraid of being charged with malpractice or murder.
And at a time when medical ethics are being challenged by high technology`s unanswered questions, such fears are far from groundless.
In 1981, two Los Angeles doctors, Neil Barber and Robert Nejdl, were charged with murder for withdrawing life-support systems from a middle-aged vegetative patient. The doctors, who had acted at the family`s request, became the first American physicians to be charged in such a case.
The complexity of the issue dominated the case. A California lower court dismissed the charges, only to have them reinstated by a higher court. Then, in 1983, a state appellate court dismissed the charges anew.
In April, three judicial decisions appear to have taken control of the dying process away from machines and given it to the patients or their relatives.
— A California appellate court ordered a stop to the force-feeding of 28-year-old Elizabeth Bouvia, even though doctors had testified that the change could lead to her death. Conscious but paralyzed for most of her life, Bouvia requested two years ago that the artificial feeding be ended, but a lower court did not agree.
— A New Jersey superior court ruled that a feeding tube may be disconnected from Nancy Ellen Jobes, 31, who has been in a coma for six years. Pending appeals, Jobes could become the first person in the country to die as a result of a court-ordered removal of a feeding tube.
— A Florida district court of appeals ruled that artificial feeding should have been discontinued for Helen Corbett, 75, who had been comatose for two years but who died before the decision. Despite her death, the court decided to hand down a ruling, which overturned a state ban against removing feeding tubes.
When life has ”reached the unconscious and vegetative state where all that remains is the forced function of the body`s vital functions, including the artificial sustenance of the body itself,” then it is appropriate to remove those artificial measures, the court said.
The withdrawal of tube feeding means patients will die from starvation or dehydration. That is the stark reality, and the subject has become emotionally charged.
”Euthanasia has now been legalized in many states in this country,”
said Bopp, of the Right to Life Committee. He said courts in 15 states have approved some type of feeding tube removal.
”When you get to the point in time where you have people who will live for years by simply receiving ordinary care–food and water–and you authorize it to be withdrawn because you don`t view their lives as being worth living, then that`s euthanasia, and it`s here.”
Those like Bopp who are opposed to the new trend call it inhumane and immoral, arguing that food and water are basic necessities that should be provided to every human, even those in irreversible comas.
People in favor of the trend argue that when there is no consciousness and no hope for recovery, artificial feeding is a mindless practice. Withdrawing artificial feeding is no different than withdrawing artificial breathing devices, they say.
Even in those patients who retain some sense of feeling, they argue, starvation is not painful and removing artificial feeding simply allows the dying process to take its natural course.
Stopping artificial feeding can be considered passive euthanasia, said Alice Mehling, executive director of the Society for the Right To Die. Active euthanasia, deliberately causing a person`s death, is illegal, she said.
She noted that respirators and tube feeding not only prolongs dying but also suffering among patients who will never recover.
At the center of the problem is the half-way nature of modern medical technology. Doctors still have no sure way of knowing which patients who are put on life-support systems during an emergency might recover normally and which will remain permanently vegetative.
”In many situations we have developed the ability to restore all the vital functions in the body except for the brain,” said Dr. Ronald E. Cranford, chairman of the American Academy of Neurology`s ethics and humanities committee.
”As we become better at restoring biological function but not brain function, we will see more and more patients who are in a vegetative state with no hope for recovery.”
These people survive in a macabre twilight zone, often causing relatives much grief. Vegetative patients frequently open their eyes, have sleep-awake cycles and appear to look around randomly at their surroundings.
They are in what doctors call an eyes-open state of unconsciousness. They are not aware, they do not think, they do not feel pain and they basically have no hope of regaining consciousness, according to some experts.
The Quinlan case brought this home to the nation 10 years ago. Her parents successfully fought in court to have her respirator removed, believing, as did the young woman`s doctors, that Quinlan would soon die.
But her brain stem continued to function, sending out autonomic signals to keep her heart and lungs working. Her parents could not bring themselves to ask that her artificial feeding be stopped, and for nine years she endured in a vegetative state.
”We absolutely had to go through the Quinlan experience,” said Cranford. ”We had to see the suffering and the futility. We had to realize that these are agonizing decisions. Now people say, `I don`t want to be another Quinlan.` ”
Of the thousands of people who have been in vegetative states, only two have been known to recover mental function, and both were almost totally paralyzed, unable even to swallow, Cranford said.
”It`ll get worse, especially for newborns and the elderly, where high-tech medical intervention is the greatest,” he said. ”We`ve developed this stupendous ability to keep people alive, but what we haven`t developed is a rational, humane medical and social policy on how to handle these questions.” The task of policy building promises to become even tougher with time. Dealing with patients in vegetative states isn`t nearly as tough in terms of value conflicts as the question of what to do about the growing number of elderly demented patients.
”The critical thing that people don`t fully realize is that these decisions affect all of us now,” Cranford said. ”The question is whether when patients are so disabled that they are unable to interact with the environment and unable to feed themselves orally, should they be fed artificially?”
Some people call this the ”slippery slope,” because once on it, society may find itself sliding uncontrollably toward some potentially dangerous ethical choices.
Dr. Mark Siegler, chief of the University of Chicago`s Center for Clinical Ethics, belives that society may have begun to lose its footing. The growing references to the ”high cost of dying” in medical and economic circles is a kind of euphemism for euthanasia, he warned.
Siegler said he is concerned that today`s intellectual climate may encourage the union of two very different themes–cost containment and death with dignity–to meet several apparently desirable social goals.
”There will be an increasing tendency to link the care of the severely impaired with cost issues,” he said. ”I think we`ll start as we have already with the permanently unconscious patients.
”One wonders whether from that group of patients there will be an extension into nursing home patients who are severely demented and whether there`ll be any tendency to expand it generally, to retarded infants or to those who are severely impaired.”
The new policy statement by the AMA, a conservative organization, has greatly enhanced such concerns. The statement, in a way, establishes a new definition of death: when a person is permanently unconscious, even if not terminally ill.
”We are flirting with euthanasia,” Siegler said. ”Perhaps we ought not to go too quickly.
”This is the kind of subject that legitimately ought to be discussed and debated in courts, in public forums and in the media before making categorical decisions about it.”
