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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

September 13, 1992|BEVERLY BEYETTE | TIMES STAFF WRITER

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.

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