The Reluctant Survivor : 9 Years After Helping Her Fight for the Right to Die, Elizabeth Bouvia’s Lawyer and Confidante Killed Himself--Leaving Her Shaken and Living the Life She Dreaded

Propped up in her hospital bed, Elizabeth Bouvia is agonizing over the suicide last month of her longtime friend and attorney, Richard Scott. “Jesus, I wish he could have come in and taken me with him. But he wasn’t thinking of me. . . .”

For almost a decade, Scott led the high-profile fight to give Bouvia, paralyzed since birth by cerebral palsy, the right to starve to death. The issue, he once said, was simple: “Whose life is it, anyway?”

In early August, Scott, 54, answered his own question. He shot himself. His estranged wife, Linda, said he had battled depression for most of his life.

Scott’s suicide is an ironic chapter in one of the country’s most celebrated fights over a patient’s right to control her own destiny. In December, 1983, he argued her case to force a Riverside hospital to let her starve to death. She lost.

In April, 1986, Scott helped her win a landmark decision affirming her right not to be force-fed. By then, however, Bouvia had begun a morphine regimen whose side effects made the process of starvation unbearable.

Now, Scott is gone. And the Elizabeth Bouvia drama, once the stuff of courtroom battles and newspaper headlines, is quietly playing out within the walls of a tiny room at County-USC Medical Center.

Has Bouvia, now 35, changed her mind about wanting to die? Is she glad she did not succeed nine years ago?

“No, no. In fact, I’m very bitter that in 1983 the decision was against me because in 1983 physically I was strong enough and was ready to go through (with starving herself).”

If she had known she would eventually have a favorable ruling, she adds, she would have tried to get along without the morphine. “As time goes on, starvation gets to be less and less an option for me. Back in 1983, it was a good option.”

She still wants to die, she says, but now the business of dying is too physically painful. And the time and place are not right.

As it is, she is not really living, merely existing: “Life is a lot of needles and bags.”

She laughs at her own description. A catheter delivers to her heart a constant drip of morphine that numbs her pain and makes her drowsy. “I sleep quite a bit. I stay up all night, watching TV or talking to the nurses, and sleep all day.”

There is the occasional visitor. Griffith Thomas--Scott’s friend and, like him, a physician-lawyer--is now her principal attorney through the ACLU. He stops by when he can and calls frequently.

Bouvia’s father and two sisters, who live in the Pacific Northwest, visit a couple of times a year.

Her father, Ren Castner, who couldn’t be reached for comment, testified a decade ago that he felt her death wish was “valid.” Today, she says, “I think they’re glad I’m here, yet they hate to see me in this situation.”

These days, she prefers not to be in the public eye. She rarely gives interviews. When she does, she insists there be no photographs and no interviews with her doctors.

A special telephone, installed about 18 months ago, and a TV, are her links to a world she rarely sees. Since she entered Riverside General in September, 1983, she has spent most of her time in hospitals--in Riverside, at County-USC and, for five months, at a county facility in Lancaster.

Victory--death--has eluded Bouvia. She is simply biding her time, she says, yet she takes pride in small everyday triumphs.

She has, for instance, mastered the telephone. She activates it by tapping an orange lever taped to a bedrail with her right hand, which has minimal function.

“It took me a month to figure out how to work the damn thing,” she says.

She has no patience with those who would have her doing something more with her life. They don’t understand, she says; they don’t suffer the pain and the drug-induced inertia.

Bouvia is weary of being targeted by some in the disabled community as a sort of reverse poster child. “They regard her as a terrible threat,” says Thomas. She has been the recipient of their hate mail. When she was first denied the right to starve herself, a group called Advocacy for the Developmentally Disabled hailed the decision as a victory for the disabled.

Any time there is publicity, she explains, “People start coming out of the woodwork. They send you letters and stuff. I hate that. It creates problems for the hospital.”

Asked what she would like the public to know about her, she quickly replies, “Nothing, really.”

Except that she still wishes to die.

“I don’t want to live lying in a bed like this for the rest of my life,” she adds. “It’s ironic. I knew exactly what was going to happen all those years ago.

“I never wanted to die, but I don’t want to live like this.”

Elizabeth Bouvia is no longer the wraithlike creature seen in news photos almost a decade ago. Once down to 68 pounds, “I weigh almost 100,” she says, the result of a “pretty much normal diet” of solid food.

Her body may be twisted and atrophied, but her mind is keen. She is intelligent, articulate and feisty--not one to suffer fools gladly. She has a marvelous, hearty laugh.

Her dark hair is brushed back and caught at the crown with a pink clip. Her hospital gown is standard issue.

“Physically, I’m feeling all right, fine, OK, I mean, I guess you could say I’m doing OK,” she says.

She explains that the morphine--8.4 milligrams an hour--makes her drowsy but controls the pain, which is caused by muscle spasms, scoliosis (spinal curvature), arthritis and osteoporosis. Her doctors say she is physically addicted to the drug.

Most of the pain is in her spine. “Sometimes,” Bouvia says, “it’s a dull, aching pain. Sometimes it’s really sharp.”

In her room, a Mickey Mouse poster is taped to one wall. A menagerie of stuffed animals hangs from a high bed rail. Bouvia laughs: “People tend to give sick people stuffed animals for some reason.”

Someone thought a bird feeder outside her window would be entertaining. “It’s a pain the butt,” she says. “There’s an isolation room downstairs and they got upset because the birdseed was going in.”

For the most part, her days are hours of monotony strung together. “I wake up around noon and I just kind of lay here.”

A private room is a luxury at a county hospital, one for which she is grateful. Hospital policy is that single rooms be given to patients--indigent or paying--on the basis of need, as determined by their doctors. The county pays $1,000 a day for her care, $600 of which is reimbursed by Medi-Cal.

She receives no more and no less attention than other cases in her ward. She does not interact with other patients, with whom she obviously feels little rapport, and with whom she wishes no contact. “I don’t want to deal with that. I have enough problems of my own.”

The death of Richard Scott is very much on her mind. “I was devastated,” she says.

“Dick always said that the best way to kill yourself would be to pick up a gun and shoot it. I just took it to mean if you needed to kill yourself. . . . “

Scott was a founder of the pro-euthanasia Hemlock Society. Their friendship began in 1982 when she contacted the American Civil Liberties Union about pro-bono legal aid.

Bouvia had not seen him since November, but they had spoken by phone about six weeks before he killed himself. She had called him to discuss the possibility of moving to an apartment.

He was distraught; she says they had an angry conversation.

“He said, ‘It’s your fault.’ He didn’t mean to say that. It was like, ‘Not now, Elizabeth, don’t bother me.’ ”

Bouvia felt almost as though he was laying a guilt trip on her. “I didn’t contribute to his suicide,” she says, “although you would have never known it from that last conversation. He gets a phone call and he just can’t deal with it. The pressure was just too much for him.”

“I’m really going to miss him,” she says. He and the ACLU team were “the first people who were ever on my side.”

She stops short of saying that he let her down by committing suicide. “I understand what he did, but I’m not convinced that he couldn’t have gotten help. If he’d tried everything and there was no way out, if he was in that much pain, I can understand. . . . I can understand if he had cancer or some physical ailment. But he had a lot to live for.”

Scott’s death frightened her. She said that to a degree he had control over her life and always looked out for her. “We were close, in a way . . . it was a brother-sister, love-hate thing. We went through a lot together.”

Thomas describes the relationship in the same words. “They were close friends,” he adds. “It was different than the usual attorney-client relationship.”

After Scott’s death, Thomas recalls, “Elizabeth said to me, ‘I know I can be a real pain in the butt.’ But I can’t say that she was a burden. That last phone conversation was very unfortunate.”

“Do you mind if I smoke?” Bouvia asks.

Griffith Thomas lights her cigarette and places it, straight up, into a holder in an ashtray on her bedside table. Attached to the tray is a tube with a mouthpiece that he places between her lips. She draws in the smoke.

Smoking is one of her small pleasures. It’s not really allowed, but Bouvia gets away with it. “I kind of live here,” she explains.

In 1986, Bouvia returned to County-USC from High Desert Hospital in Lancaster, where she had been transferred in 1985 when doctors decided she no longer needed acute care. Lancaster doctors had balked at continuing the morphine regimen that had been started at County-USC.

She hates living here, though she is quick to praise the staff, and the care they give her--”I’m glad for what I’ve got. It could be a lot better, but it could be worse.”

If she must be in an institution, she is content here. But she fantasizes about living either with her family or on her own. Neither seems feasible. The latter, she knows, would cost too much. And she would not inflict herself on her family.

“My sisters are still young,” she says. “That would ruin their lives.” (One is is dental school, the other starting law school).

One of her great fears, Thomas says, is of being abandoned. “When Dick (Scott) died, she panicked.”

He is helping to fill the void though his role, he says, is mostly that of friend because no legal action is contemplated. A member of her original team of pro-bono lawyers, they met in 1982.

Bouvia does not seem to feel sorry for herself. “If I did,” she says, “I’d go crazy. If I dwelt on the situation, all I’d do is make others miserable.

“It tends to depress other people.”

“I’ve never changed my mind” about wanting to die, Bouvia says, “but it’s kind of a Catch-22 situation.” Now that she has the right to starve herself to death, she says, she couldn’t stand the pain and “it’s not like the doctors are going to help me.”

“I’d rather be dead than live like this,” she adds. “I know if I died tomorrow, I’d probably be better off. I hope I die in my sleep.

Bouvia has not attempted starvation since 1987. “You’ve really got to have a lot of willpower to put up with the complications.”

She offers an analogy: “It’s like someone who’s running and running and running and they’ve got cramps in their legs. You tell them if they stop running, the cramps will stop.”

Bouvia thinks that her long legal battle has made a difference. “However,” she says, “that isn’t what I was out to accomplish.”

Everyone should have the right to choose life or death, she says--”doctors shouldn’t have the total authority. Doctors aren’t God. They’re just people who have a degree in medicine.”

Thomas says hers is without question “one of the leading right-to-refuse-medical-treatment cases. It’s spread throughout virtually all the jurisdictions in this and other countries. This really established the patient’s primacy in making health-care decisions.”

In Bouvia’s case, he says, “we wanted her to be successful, but none of us wanted her to end her life.”

Bouvia’s prognosis is uncertain. “Her general condition is excellent,” Thomas says. “She has an amazing immune system. She resists everything. And she’s getting superb nursing care.”

“The doctors don’t know” how long she has, Bouvia says. Back in 1983, they told her she might live from eight to 15 years. “Every now and then,” she says, “I get depressed that I’m still alive.”

Her voice is tinged with bitterness as she adds, “I could live to be 80.”

She thinks again about the quality of her life, compared to that of Richard Scott, who chose suicide.

She knows she cannot expect someone else to pull the trigger for her. But, she says, “If I could shoot myself. . . .”

Elizabeth Bouvia on Living and Dying

‘If I dwelt on the situation, all I’d do is make others miserable. It tends to depress other people.’

‘As time goes on, starvation gets to be less and less an option for me. Back in 1983, it was a good option.’

‘I’d rather be dead than live like this. I know if I died tomorrow, I’d probably be better off. I hope I die in my sleep. Maybe someday I’ll decide to stop eating again.’

A Matter of Life and Death * May 19, 1957--Elizabeth Bouvia is born in Fort Stockton, Tex., afflicted with cerebral palsy.

* June, 1982--Graduates from San Diego State University with degree in social work.

* Aug. 25, 1982--Marries Richard Bouvia, a former convict she met through a jailhouse correspondence. They soon separate and, in 1984, divorce.

* September, 1983--In declining health, she leaves care of her family and enters Riverside General Hospital, asking to be spared all treatment except pain-relievers and hygienic ministrations. She states her wish to starve to death. The hospital refuses, citing medical ethics and state law against aiding a suicide. Bouvia says she will take a liquid diet until ACLU lawyers can take her case to court.

* December, 1983--Superior Court Judge John H. Hews denies Bouvia’s request to starve.

Overnight, her case becomes a cause celebre in the right-to-die debate. Hews says she has the right to kill herself, but “not with the assistance of society.”

* January, 1984--The California Supreme Court rejects Bouvia’s appeal of Hews’ ruling.

* April, 1984--Bouvia goes to Tijuana to carry out her plan, but the staff at Hospital Del Mar does not cooperate. She checks into a motel there, hoping to enlist friends to help, but is convinced that she cannot put them in a perilous legal and ethical bind. At their urging, she eats solid food for the first time in seven months.

* November, 1984--ACLU attorney Richard Scott, who has represented Bouvia from the start, says she “still wants to carry out her original wish and take a powder . . . she’s waiting for a better opportunity.”

* September, 1985--Bouvia enters County-USC Medical Center for treatment of severe, persistent pain.

* December, 1985--An indigent under county care, she is transferred to High Desert Hospital, a county rehabilitation facility in Lancaster, on grounds she no longer needs acute care.

* January 21, 1986--Bouvia resurfaces at center of the right-to-die debate, suing to force High Desert to remove her nasal feeding tube. Doctors say that would be abetting suicide. In court, attorney Scott will argue that Bouvia has the “paramount right” to refuse force-feeding. Superior Court Judge Warren Deering will deny Bouvia’s request.

* April 16,1986--In a landmark decision, a state appeals court affirms Bouvia’s “basic and fundamental” right to determine the course of her own medical care and orders the feeding tube removed. She promises to eat a life-sustaining diet until she can transfer to an institution that will not oppose her wish to die.

The ruling affirms the right of all patients, regardless of age, condition or motive, to control their treatment.

* April 24, 1986--Los Angeles Superior Court Judge Jack M. Newman orders the Lancaster facility to temporarily stop weaning Bouvia from morphine, which doctors there deem unnecessary. The morphine regimen had been initiated in October, 1985, at County-USC and, Bouvia’s attorneys argue, she is “clearly addicted.”

* May 23, 1986--Bouvia is returned to Los Angeles County-USC Medical Center by court order. There, she will continue to get morphine.

* January 12, 1989--John Hayden Hews, the judge who denied Bouvia’s original appeal to let her die, succumbs to a heart attack in Riverside. He is 60.

* Aug. 6, 1992--Richard Scott dies in Los Angeles of a self-inflicted gunshot wound. He is 54.