Rules for the end of life

April 12, 1996|By Ellen Goodman

BOSTON -- If you are looking for a medical term to describe their condition, you might call them the ''worried well.'' Since recent court decisions lifted the ban on doctor-assisted suicide in 12 states, both those who favor and those who oppose these rulings are worrying about what happens next.

It's only 20 years since Karen Ann Quinlan's case came to court attached to a life-support machine. It's only six years since the Supreme Court finally ruled that there was a right to die, or more properly, a right to refuse life-prolonging treatment.

Now, in rapid, stunning succession, the courts have taken two giant steps on assisted suicide, changing the rules for one-third of the population. First the 9th U.S. Circuit Court of Appeals upended a Washington state ban, saying it violated the right to privacy. Then a more conservative 2nd U.S. Circuit Court of Appeals struck down a ban in New York, on the grounds that there was no difference between pulling the plug and writing the prescription.

Even Dr. Timothy Quill, a plaintiff in the New York case and a poster doctor for this cause since 1991 when he wrote publicly of assisting a suicide, finds the speed of change ''a bit unnerving.'' He applauds the rulings that will bring assisted suicide out of the closet, but says, ''We are going from secretive to open in some sense overnight. I worry that we don't have the infrastructure of safeguards in place.''

As ethicist Dan Callahan puts it, a movement built on the humane desire to alleviate suffering at the end of life ''could go sour.''

The concerns about this ''souring'' are strung out like worry beads along a moral chain. Will permission for assisted suicide become permission for euthanasia? Will we worry less about easing the path to death if we can speed it up?

Furthermore, will terminally ill people choose to end life when it becomes too painful a burden for themselves, or when they become too great a burden on their families? And will the right to choose suicide morph gradually into the duty to take this final exit?

Economists like Harvard Medical School's Rashi Fein, who describes himself as ''torn'' on this question, wonder about the right to doctor-assisted suicide in a country without the right to doctor care: ''I don't consider it some accident that these discussions come at a time when the health-care system is more and more concerned with the bottom line and limits.''

Ethicists like Dr. Callahan who oppose these rulings wonder about the whole concept of ''death with dignity.'' He fears that the rulings will promote a ''yuppie notion of human dignity'' if the underlying fear of childlike dependency, of incompetence and incontinence, could precipitate more suicides among the old and ill.

Most Americans support legal, assisted suicide -- as I do -- for the most personal of reasons. We just might want it someday. As Dr. Quill says, ''My belief is that the people who will really benefit are the 75 percent who want this possibility. The possibility is much more important to people than the reality.'' He knows many people who have gone on living once they had that reassurance from a doctor.

Safer in the open

We believe furthermore that this care shouldn't depend on which doctors you know and what risks they are willing to take. We even hope that doctor-assisted suicide will be safer in the open ++ than in the shadows.

But if we are moving in that direction, the ''worried well'' must ask how we will move safely. In Dr. Quill's words, ''How can we make it work and promote good palliative care and hospice care and still provide this escape?''

One model is the Oregon law, the only one passed by state ballot only to be struck down, and now on appeal. That law allows doctors to write prescriptions for aware, adult, terminally ill patients who ask orally and in writing. It requires a 15-day waiting period, two witnesses, a second doctor. The patients must be informed about options -- especially about pain -- and must take the drugs themselves.

Another model is one used now by doctors when patients -- 10 percent of them -- want to come off kidney dialysis machines. In response to this self-death sentence, there is the call for a second doctor, assurance that patients are truly informed, that every effort is made to alleviate suffering.

In this era of managed care, Rashi Fein adds, there should be reviews to make sure that patients are not assisted too willingly.

None of these safeguards is perfect. But neither is the free-lance, underground system now in place. In the wake of two new rulings, there are 12 states with no legal safeguards.

Now, ready or not -- and we are not -- this issue is on its way to the Supreme Court. It's time to do more than worry.

;-

Ellen Goodman is a syndicated columnist.

Pub Date: 4/12/96

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