Terminally Ill Are Determined to Make Their Own Judgments

Dale Gilsdorf sometimes imagines the moment of his death, and it makes him feel powerful. It’s an odd thing, really: how knowing he is going to die gives him the ability to choose how it will happen.

Diagnosed a year ago with lung cancer and in March with a brain tumor, the 58-year-old Olympia, Wash., psychotherapist has spent months repairing old relationships, saying things he never got a chance to say before, explaining to his daughters that--if it seems necessary someday--he will take control of his body away from the cancer and swallow a cocktail of drugs powerful enough to kill him.

Because the U.S. Supreme Court ruled Thursday that there is no broad constitutional right to do what he proposes to do, Gilsdorf will likely have to do it without a doctor’s open help: no physician at his side to administer the medication, no one to treat its possible side effects, no one, indeed, to help him know at that last moment that hope is gone and death is at the door.

Yet Gilsdorf, surrounded by friends ready to help, feels fully ready to commit the last act of his life--with or without legal sanction. Ironically, he said, the high court’s refusal to recognize his right to do so could have the benefit of spurring state legislatures across the country to act.

“It’s another step that’s taken place, which will enhance the probabilities, three or four or five years from now, of legislation allowing physicians to assist patients,” Gilsdorf said. “On an individual basis, I don’t have any fear. I just don’t. I can find the means to enhance my death.”

*

As legal scholars across the country debated the foundations of the high court’s ruling, some of those most intimately awaiting it--patients with terminal diseases and their families--were stung by the setback but determined to press ahead with state legislation permitting doctors to help terminal and desperate patients to die.

“I’m very much glad to see it come back to the states, and hopefully with all that has gone on, death is completely now out of the closet,” said Jinny Tesik, a Seattle grief counselor whose father ended his own life without a doctor’s help. “It’s not a setback even. We have gotten national attention on this. It’s a beginning step, and it’s not over.”

For the men and women who may someday want to decide when to end their own lives, the reactions to the court’s decision were as personal as their own life-and-death choices.

For John Baer, it’s an issue of religious freedom. For Jeff Fenston, it’s all about property rights. For both men--grappling with terminal illness--the Supreme Court made a big mistake.

“I think my body is my property,” says Fenston, 44, of San Francisco, living with AIDS and comforted by a safe-deposit box full of life-ending drugs. The decision is “infringing on my rights as a human being. It’s invading my doctor-patient confidentiality. It’s none of the Supreme Court’s goddamn business what goes on between me and my doctor.”

Or between people and their conception of God, says Baer, 53, a retired commercial pilot who considered assisted suicide six years ago when battling lymphoma.

“This should come under freedom of religion,” said the Arroyo Grande, Calif., man. “If I think that there is a life after death, then I should have no fear of going on. . . . It’s all a matter of religion and how you put man in perspective to life.”

Several years ago, Fenston consulted his two physicians about helping him end his life if life with AIDS became too unbearable. The two compared notes and eventually decided that he was sane and worth supporting in his decision.

“I can have as much insomnia as I want, and he can write as many prescriptions for it as he wants, and there’s nothing illegal about it,” Fenston said.

*

He takes the so-called triple therapy of protease inhibitors, which makes him vomit daily. If it weren’t for that safe-deposit box filled with pills, he wouldn’t be taking the leap of faith that triple therapy takes. So basically, the ability to die when he wants to has actually prolonged his life. And he wishes that the court would understand that nuance.

“I could never start triple therapy if I didn’t have the choice of self-deliverance,” Fenston said. “It’s like jumping off a cliff and hoping there’s a lake at the bottom.”

Baer, whose lymphoma has been in remission for nearly six years, came “very close to making that decision” for physician-assisted suicide.

Chemotherapy failed him. He faced a bone marrow transplant as he watched a friend die a horrible death from Lou Gehrig’s disease.

Baer made out a living will. He made his wife promise that “when I wanted to go, they would allow me to go,” he recounted. “She agreed.”

Baer made it through the transplant and is still a fervent believer in the right for terminal patients to end their lives. “I’m very disappointed [by the decision], but I guess it’s not as bad as I originally thought. The battle is now within the states,” Baer said. “It’s sad that someone who can’t get themselves out of bed, if they want to keep their death legal, will have to get themselves into an ambulance and cross a border.”

Gilsdorf, likewise, has chosen life for the moment. “The spirit-and-hope model is alive and well,” he said.

But his family has been told he is prepared to change that decision if the time comes. His daughters, each for her own reasons, have elected to be present but not to participate should he have to end his own life. “If I need water, tough. If I start vomiting, tough.” But Gilsdorf said what is important is that he will be in control of that ultimate decision. “There’s a lot of joy in this,” he said. “It’s not just doom and gloom at all.”

Pat Migliore, a 44-year-old Seattle woman with AIDS, watched her husband die of the disease eight years ago. His parting, she says, was eased by drugs prescribed for his pain. Probably, she says, the drugs made him go quicker; she’ll never know for sure.

“We couldn’t ask the doctor to legally assist him. I don’t want to have to go through the same thing myself,” she said.

Tesik, the Seattle grief counselor, will live forever with the knowledge that her father died alone.

*

At 76, he was diagnosed with end-stage emphysema and remembered the agonizing death of his wife, from lung cancer, two years earlier. “He told me at the time that he was not going to end his life that way, and that if I was not going to be able to help support him in a peaceful way, he would do it with a butcher knife,” Tesik recalled.

Her father consulted the Hemlock Society for advice, and slowly, he deteriorated. Eventually, he was tethered to an oxygen tube and couldn’t get out of bed to bathe or shave. “I said, ‘Let’s get a bath aide in,’ ” Tesik said. “He said, ‘Let’s not.’ He said, ‘Tonight, we’re going to do it.’ ”

Tesik went out and bought a bottle of vodka and some Bloody Mary mix. She brought him the liquor and an assortment of Valiums and heart medication that they had accumulated. And then she started trying to figure out how to say goodbye.

“He told me not to cry. I said, ‘There’s no way I’m walking out of this room without crying,’ ” she said.

“We didn’t even know at all whether this was going to be able to help him with a peaceful death,” Tesik said. “I could not be with him when he died. He ended his life by himself, and I went out and I sat in a cemetery for five hours, alone, waiting for him to die. Because it was illegal. Because I could not give the support that I needed in this country to be able to have a loving, final closure with my father.”

“I was terrified of coming back and finding that he was not successful,” she said. “I didn’t know what I would find. But when I came back, he looked like he had taken the medication and died peacefully. I was so relieved. I like sat down and held his hand, and said, ‘Good job.’ ”

Murphy reported from Seattle and La Ganga from San Francisco. Times staff writer John Johnson in Los Angeles also contributed to this story.

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Status Around the U.S.

In one of the most important ruling of the 1996-97 term, the Supreme Court upheld laws in New York and Washington state barring doctor-assisted suicide. Most states have made the practice a crime:

Assisted suicide illegal

Introduced bills allowing assisted suicide

Law is unclear

WHERE OREGON STANDS

Right-to-die law was challenged in court. New one on ballot in the fall.

Source: Hemlock Society; researched by D’JAMILA SALEM FITZGERALD / Los Angeles Times