Doctors are still coming to grips with how to deal with dying patients. Better pain management techniques, however, are relieving the fear some patients have of living with relentless pain. Dr. Gordon Williford, a Columbia Augusta Surgical Center anesthesiologist, prepares a patient for surgery where a pain-breaking stimulator will be installed. Photos by Steve Shelton/Staff

By Tom Corwin
Staff Writer

He ignited the debate nearly 20 years ago when he wrote of helping his wife die. But now Derek Humphry can almost see the day when what he did will be legal and out in the open.

But in Augusta, that day may be a long way off, even if the U.S. Supreme Court decides to side with Mr. Humphry and those seeking a right to physician-assisted suicide.

The court is expected to rule on two appeals court cases concerning aid in dying. In the meantime, national health care organizations and schools such as the Medical College of Georgia are working to better educate their profession about how to care for the dying, a move they hope will reduce the call for suicide no matter what the court rules. For those in Augusta who deal with patients facing long and painful deaths, the ruling could only complicate how they treat their patients.

The future for dying patients hangs on which way the Supreme Court rules. Two separate appeals courts found that state bans on assisted suicide in Washington state and New York were unconstitutional, but for different reasons, said Don Welch, a professor at Vanderbilt University's law school who teaches a joint course with the medical school in bioethics.

The Supreme Court could take one of those two arguments in ruling there is a right to have aid in dying, Dr. Welch said. One is that within the 14th Amendment there is a ``liberty'' to choose one's own death; the other is that within the ``bodily integrity'' granted to patients, also under the 14th Amendment, there is a right to refuse even life-preserving treatment, Dr. Welch said.

``The next step is, does that right to self-determination, or that bodily integrity, go to the next step of ending one's life?'' Dr. Welch said.

Mr. Humphry believes it does. A former journalist in England and the United States, Mr. Humphry caused an international stir in 1978 when he published the story of how he helped his dying wife, Jean, end the pain of bone cancer through an assisted suicide. In 1980, he helped found the Hemlock Society, one of the first grass roots groups advocating the right to die. He caused another stir in 1991 with the publication of Final Exit, a how-to book on safe and painless suicide.

Doctors such as Allen Sloan now have a variety of weapons, such as surgically implanted devices, to combat chronic pain. Photos by Steve Shelton/Staff

He said he believes the Supreme Court might not have a choice but to rule in favor of a right to die because the arguments have been based on previous court rulings that upheld a woman's right to an abortion.

``We sort of built the case on their own rulings,'' said Mr. Humphry, who predicts a close 5-4 ruling in favor of a right. Even if the court rules against them, ``they still can't stop us,'' Mr. Humphry said, as states push to legalize the practice through referendums, as Oregon did in 1994. Nebraska, Wisconsin and California will take up the issue in 1998, Mr. Humphry said. ``They can't stop the state from deciding. We've still taken a quantum leap forward.''

For Kapil Sethi and others who care for incurable patients, it is an option they might not want their patients to face.

For instance, Dr. Sethi is careful to tell patients who are diagnosed with Huntington's disease that it is not a fatal disease, though patients face a long decline over 15 to 20 years that often results in dementia and death.

``It's important not to take their hope away,'' Dr. Sethi said. ``The incidence of suicide in Huntington's is very high.'' The disease, which is caused by nerves dying off in the basal ganglia area of the brain, is not as treatable as other nerve diseases such as Parkinson's. Research is focusing on whether nerves from fetal pigs can be transplanted, or whether the nerves have been altered so that common nerve chemicals kill them off, a condition that some drugs might reverse. Neither therapy is far enough along to put much faith in, Dr. Sethi said, so the key is to get patients to focus on the future.

That could be complicated by a right to ask a physician to help avoid a bad death, something Dr. Sethi said he has not been asked.

``Death is not the best way to go,'' he said, and any system that would implement it would have to make sure the depressed and despondent aren't being preyed on.

In fact, surveys show the top reason cited by those who favor aid-in-dying is the fear of becoming a burden on the family, followed by the fear of living in severe pain. To pain management specialists like Allen Sloan, it is not pain but psychological factors that fuel the push for a quick, painless exit.

``The issue of euthanasia and Kevorkianism is more an issue of dysfunction than pain,'' Dr. Sloan said.

Thomas, an HIV patient who works with others with the virus who become homeless, said that's one reason many consider suicide.

``People are scared of that, they don't want to depend on anyone for food or for living,'' said Thomas, who asked that his name not be used.

Abuse by family members also worries institutions like University Hospital, said risk manager Jack Swihart.

``There are situations where families don't always do what is best for the individual,'' Mr. Swihart said. There could also be a temptation to target certain groups of patients, or poor, uninsured patients to pressure into that decision, Dr. Welch said.

Oregon's law contains safeguards against those concerns by requiring a second doctor's opinion and certification that the patient is not depressed or being pressured into the decision, Mr. Humphry said.

Even if the court finds that states can't prohibit assisted suicide, it is unlikely that hospitals and mainstream doctors will begin offering it, in much the same way they also don't perform abortions, though they are legal, Dr. Welch said.

``It is almost antithetical to what a hospital is for,'' Mr. Swihart said.

Georgia prohibits physician-assisted suicide, but no doctor has been prosecuted under the statute, said Andy Watry of the Board of Medical Examiners.

``I hope we don't have a Kevorkian because no one wins in those cases,'' Mr. Watry said. In South Carolina, the practice is assumed to be banned by common law, and it is unclear what a Supreme Court decision would do to states in that situation.

Ironically, a court ruling for the right to die could complicate things for those who are now doing it clandestinely, Dr. Welch said.

``Some physicians are opposed to regulations regarding physician-assisted suicide out of the fear that any sort of regulations could restrict a physician's ability to act in the patient's own interest,'' Dr. Welch said.

Doctors and hospitals must take some of the blame for the rise of the right-to-die movement because they have failed to respond well to dying patients, said Steve Schroeder, president of the Robert Wood Johnson Foundation. A 1995 report from the foundation showed that half the dying patients able to talk to their doctors were still in severe pain at the end and that half the time the doctors were unaware the patients had written out a request not to be revived.

The group recently funded an education program with the American Medical Association to reach out to physicians and to medical schools such as MCG to teach them how to better care for the dying, Dr. Schroeder said.

For instance, only about half the patients nationwide, and about half locally, who are eligible for hospice care are actually referred to the program, said Russell Moores, director of St. Joseph Hospital's hospice. Many referrals are sent with less than a week to live, ``and that's not long enough to bond with the patient'' and provide support, Dr. Moores said.

A lead from a spinal cord stimulator is fed into a sheath at the base of the neck to provide an electrical stimulus so that it can prevent the body's pain signal from reaching the brain. Photos by Steve Shelton/Staff

After an incision is made in the hip of the patient, the Medtronic stimulator is placed beneath the skin so that it can interrupt pain signals traveling up the spinal cord. Photos by Steve Shelton/Staff

One reason is the inability of doctors to recognize that further care is futile - often cancer patients will receive chemotherapy until the day they die, Dr. Moores said. It is part of the physician culture.

``You get the thinking, `I'm supposed to cure this patient and if somebody dies, I'm a failure,''' Dr. Moores said.

Doctors need to communicate better with patients, Dr. Schroeder said.

``When I was in medical school, you didn't even tell a patient they had cancer,'' Dr. Schroeder said.

Doctors also must do a better job of comforting the dying, he said.

``One (way) is to help educate doctors as to how to treat pain; doctors tend to undertreat pain, especially at the end,'' Dr. Schroeder said. Doctors fear running afoul of federal agencies if they prescribe too much pain medicine, and they fear the scorn of colleagues if they are found to be freely dispensing narcotics, Dr. Schroeder said.

Federal agencies need to change the way they scrutinize doctors' practices and take into account that some may be treating dying patients, Dr. Schroeder said.

Patients, too, need to be better educated about options such as hospice care, Dr. Schroeder said. Low-income patients, particularly, are not referred to hospice in part because they might not know about it, said Dr. Bernice Harper of the Health Care Financing Administration, who heads the National Hospice Organization's task force on outreach.

In fact, right-to-die advocates support the hospice option, Mr. Humphry said.

``I would encourage people to find friendship and support and to live as long as possible,'' Mr. Humphry said. ``But at the end of the day, it's their decision.''

The AMA and mainstream doctors hope that having better ``comfort care'' available will persuade patients not to opt for suicide, Dr. Schroeder said.

``I don't think it will ever be eliminated,'' Dr. Schroeder said, ``but I think you can reduce it. I can't believe we'd ever see suicide as the answer.''

``It's a matter of my personal choice,'' Mr. Humphry answers.