Life and Death : Feisty Crusader Fights for Patients’ Control of Their Medical Care

Mary Lawrence’s chronic pulmonary disease was so bad that she needed a mechanical ventilator to continue breathing. But the 81-year-old woman hated it so much that she tried to rip out the tubing.

Her Covina hospital doctors knew that she had signed a “living will,” asking that she not be kept alive by artificial means, but when they attempted to wean her from the ventilator she flailed in agony. That was a sign, the physicians felt, that she wanted to be reconnected. They kept the tubing in. Lawrence’s family objected and went to court to remove it.

The man they hired was Richard Stanley Scott, a bright, glib “patient’s rights” attorney whose recent court victories had significantly broadened California patients’ right to refuse life-preserving measures.

Scott, an unabashed crusader who once co-founded a group advocating the right of the terminally ill to take their own lives, believes that patients should have absolute control over all facets of their medical care. He is fond of issuing warnings to physicians like: “Put one drop of eyewash in an unwilling patient and that’s a massive invasion of privacy.”

This time, though, there was a gray area that even Scott’s black-and-white reasoning could not overcome: Lawrence could no longer speak clearly enough for anyone to be certain what her true wishes were; when she was disconnected from the ventilator, it was unclear whether her distress was an instinctive reaction to suffocation or a real cry for artificial life support. A Superior Court judge sided with the doctors.

It was an example of the quagmire of laws, ethics and emotions that Scott, a 48-year-old physician-turned-lawyer, confronts on the cutting edge of the right-to-die movement.

In essence, Scott’s goal is forging court rulings that go beyond California’s Natural Death Act of 1976, which assures terminally ill people of the right to refuse life-prolonging medical care, and a 1983 state law designed to let patients appoint a proxy to make medical decisions if the patient should become incompetent.

Scott contends that constitutional guarantees of privacy extend such decision-making authority to any patient who has come to that fork in the road where personal hope for recovery ends--whether or not their physician believes the illness is terminal.

In the last 2 1/2 years he has enjoyed two impressive successes.

The first came in late 1984, when the 2nd District Court of Appeal overruled a Superior Court judge who had held that the Natural Death Act could be applied only to patients in a “comatose, vegetative state.”

The court sided with Scott’s client, William Bartling, 70, who suffered from five potentially fatal diseases but had been refused permission to be disconnected from his respirator at Glendale Adventist Medical Center. Bartling’s right to refuse the treatment, the court said, outweighed his doctors’ concern about the preservation of life or the fact that Glendale Adventist prided itself as a Christian, “pro-life-oriented” hospital.

Then, a month ago, the same appellate court ruled that Elizabeth Bouvia--a 28-year-old quadriplegic whose longstanding goal of death by starvation has received wide attention--has an absolute right to refuse force-feeding in a Los Angeles County hospital, “even if (it) creates a ‘life-threatening condition.”

The Bouvia ruling, now being appealed by the county counsel to the state Supreme Court, has been strongly criticized by Roman Catholic Archbishop Roger M. Mahony of Los Angeles, who said it was “repugnant” to Judeo-Christian ethics and could be interpreted as “an attempt to construct legally a ‘right to suicide,’ ” and by County Supervisor Kenneth Hahn, who called for a wave of public encouragement to change Bouvia’s mind.

There has also been considerable opposition from groups that represent the handicapped, who believe that the ruling lends support to “the proposition that the best thing to do for a handicapped person is to get rid of them,” according to USC Law School professor Alexander Capron, former executive director of the President’s Commission for the Study of Ethical Issues in Medicine. (Capron said he nevertheless supports the ruling on the ground that a patient’s right to refuse treatment transcends other concerns.)

Scott, a personable, gray-haired man, is conversationally informal to the point of folksiness, able to interrupt his description of Bouvia’s forced feeding to note that “they’re never gonna get her in shape for the rugby team.” But when confronted with opposition to the recent Bouvia ruling, his words come harder and with a rush of impatience.

First, there is a semantical distinction. He is not arguing for a right to die, he said in an interview in his Beverly Hills office, where framed pictures of Bouvia and Bartling in their hospital beds are hung behind his desk. “That implies that to enforce that right you can ask somebody else to do something.” He is merely advocating the right to say no.

Patient Can Say No

And from the Bartling and Bouvia rulings, he continued “it ought to be clear now that any patient can say no to any medical care, for any reason--a patient of any age, in any kind of hospital, any diagnosis, any prognosis, any nearness to or supposed farness from death. You can say no for any goddamned reason you want. . . . It isn’t even anybody’s business what (Bouvia’s) motives are. It’s just like your right to free speech.”

Scott is the lead attorney among six California lawyers who have donated their time to the Bouvia case under the aegis of the American Civil Liberties Union. He is a member of a seven-attorney law practice, spending much of his time on medical cases.

His commitment to the cause of refusing treatment has been “terribly important,” according to Fenella Rouse, senior staff attorney for the New York-based Society for the Right to Die. “The justices (in the two rulings) said tremendous things.”

“Everybody owes him a lot of thanks for raising these issues and making sure that they get resolved,” said Dr. Bernard Lo, a physician at the University of California, San Francisco, who writes about medical ethics and believes that Scott’s dual training in law and medicine has made him particularly effective.

A Protected Right

The strongly written Bouvia ruling said that her right to refuse care--even food and water--is “part of the right of privacy protected by both the state and federal constitutions. It is not a medical decision for (Bouvia’s) physicians to make. Neither is it a legal question whose soundness is to be resolved by lawyers or judges. It is not a conditional right subject to approval by ethics committees or courts of law. It is a moral and philosophical decision that, being a competent adult, is hers alone.”

Most critics of the decision say that Bouvia--a cerebral palsy victim who could live 15 to 20 years, according to physicians--should not be treated like a terminally ill patient, and that food and water should be withheld only in cases where the patient is comatose.

Scott finds such distinctions irrelevant.

“Respect for life is most evident by letting the person living that life make the choices,” he said. “And it’s not just the easy choice--whether you want the bed nearer or farther from the window. You get to make all the choices.”

According to Scott, Bouvia still wishes to die (“she would nudge fate’s elbow, if she could, to hasten her demise”), but has decided to maintain a minimal liquid diet at least until the state Supreme Court hears the county’s appeal.

Like Kidney Patients

Her desire to end her life by starvation, he said, is no different than the more common decision of some kidney patients who decide to die by stopping the treatment of dialysis, which mechanically eliminates impurities from the blood. When fatal complications develop, hospitals routinely readmit such patients and provide hygienic care and painkillers, Scott said, adding sardonically, “Elizabeth just had the wrong disease and was the wrong age.”

Scott began college in Oregon in the late 1950s as a music major (“thinking I’d be another Stan Kenton”) then switched to medicine. He graduated from the University of Oregon Medical School, completed his internship and thought about neurosurgery, but was put off by the thought of five more years of training. Besides, he said, he was tugged by “a longstanding interest in how society solves its problems, which I suppose is more interesting to me than how the body makes a nerve cell out of a carrot.”

He moved to Los Angeles and eventually divided his time between UCLA law school, working as a producer of medical and public television programs, working in hospital emergency rooms and serving as an assistant professor at USC’s Department of Emergency Medicine.

Scott said he personally disagrees with Bouvia’s decision to end her life (“the world will be a poorer place without this brave and committed woman”) and said his fascination with the refusal-of-treatment issue stems from a simple belief in individual rights, rather than any first-hand experience.

Supports Euthanasia

His involvement grew steadily after he began his law practice. He served on a County Bar Assn. bioethics committee that drafted guidelines for the Natural Death Act and a county government committee on life-support policies. In 1979, he helped found the Hemlock Society, a voluntary euthanasia group, and contributed a chapter to the organization’s controversial guide to committing suicide. (Scott said he left the group two years later for reasons he described only as “disagreement about methods of procedure.”)

In 1981, he represented William J. Foster, a 67-year-old man with an irreversible neurological disease who had been unable to persuade doctors at a Veteran Administration’s hospital to disconnect his life-support system. A federal judge ordered the machinery disconnected, but Foster went into a deep coma and was declared brain dead before the order took effect.

Two years later, Scott and other ACLU lawyers began representing Bouvia, but lost their first lawsuit. A Riverside Superior Court judge denied Bouvia’s request that he order a Riverside hospital to withhold nourishment while giving her hygienic care and painkillers.

Subsequently, Bouvia left the hospital, lived for a year in private care and began ingesting a liquid diet. Last January, after she had returned to hospital care and was a patient at the county’s High Desert Hospital in Lancaster, doctors there began force-feeding her against her will. They said they believed that her weight had dropped to an unsafe level. She lost her lawsuit to remove the feeding tube in Los Angeles Superior Court, then won on appeal.

Back in Court

Next week, Scott and the other Bouvia lawyers will be back in court on a peripheral issue: her lawsuit against High Desert Hospital’s plan to wean her of morphine, which she has taken since last fall to ease her pain. Doctors, who say they plan to gradually reduce the dosage, contend that morphine is an unjustifiably strong pain reliever for Bouvia. Scott contends that the change in treatment is a “medical procedure” that cannot be made without Bouvia’s consent.

Scott said he has been frustrated by the dealings with High Desert Hospital because he assumed that the county counsel’s office would not challenge Bouvia’s choices after the 1984 Bartling decision.

Still, he said, the progress since his days as a medical student has been considerable.

“There wasn’t such a thing as patients’ rights then, hardly,” he said. “The patient had the duty to get the disease, to lie down and thereafter be the battlefield upon which medical science, aided and abetted by nurses, conducted this battle. The idea that some patient could say no was scarcely thought of.”