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A Time for Dying? : Rather than face a horrible, lingering death, some AIDS patients say they plan to end their lives. For them, it's a way of keeping control.

July 19, 1994|LESLIE KNOWLTON | SPECIAL TO THE TIMES

NEW YORK — During the day, Joe Miller stays busy helping AIDS patients. At night, the catheter delivering a medley of medications to his emaciated body reminds him that he, too, shares their fate.

But Miller, who has been in and out of the hospital nine times in as many years, doesn't plan to let the disease take him all the way down to dementia or some other horrible finale as it has done to so many of his friends.

With poison he has obtained, Miller will be able to kill himself before AIDS does. "I'm not a victim," he says. "Victims have no control. I'm going to be in control until the point of dying."

By some estimates, more than half of the 360,000 AIDS patients currently diagnosed in the United States have made preparations to end their lives when--and if--they decide the time is right.

Coast to coast, they hoard powerful medications--a ritual called "stockpiling"-- or plan other methods, such as the plastic-bag suffocation described in the best-selling suicide primer "Final Exit."

Despite public uneasiness with euthanasia and in defiance of laws against assisting with suicide, many recruit relatives or friends to help, should they become too incapacitated. Others ask their medical care givers to assist.

And while most will never carry out their plans, at least 1,000 have done so, says Dr. Peter Marzuk, a Cornell University psychiatrist who has studied suicide rates in AIDS patients.

"It goes on a lot more now because they're just not dying as quickly as they used to," says psychoanalyst Mark Blechner, founder of the HIV Clinical Service at the William Alanson White Institute in Manhattan.

"Now that we're treating the diseases that used to kill them early, they're getting to a state of such deterioration," Blechner says. "They're really very ill and really, really suffering."

"People live longer and more uncomfortably because medical science has intervened in every illness," says Los Angeles resident Gary Costa, 32, who was diagnosed HIV positive in 1985 but still is healthy. "Nature didn't intend us to live so long."

As program director of Being Alive: People With AIDS Coalition, Costa knows hundreds of HIV-positive people and AIDS patients in Los Angeles. He says most have stockpiled drugs and made pacts with others to help if necessary.

"I've stocked enough morphine to wipe out a family of 10," he says. "It's my emergency stash in case I have to go out."

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Costa and others find comfort in making preparations to keep their options open. But that doesn't make it easy for anyone when the time comes.

He'll never forget an October morning in 1985, the day he refused to help his partner die.

"He couldn't breathe, he was blind and his whole quality of life was gone," Costa recalls. "We'd had a pact that I'd give him a lethal injection but I freaked. I just couldn't do it."

The man, angry, sent Costa to the store to buy ice cream. Then he dialed 911 and shot himself fatally in the head.

"I heard the sirens and saw the ambulance as I was coming home," Costa says. "And I knew. He'd called 911 so I wouldn't have to be the one to find him."

He has come to terms with that event, he says, and stresses that most of the 67 people he knows who have died ultimately did not take their own lives.

"With the availability of morphine at home and good home care, they've opted to ease out naturally," he says.

Still, he fears what could lie ahead for himself. That's why he has arranged with a friend who he knows will be able to carry out his wishes should he choose to die.

"I'm asymptomatic now and don't know what the future holds for me," he says. "But I don't take being sick very well and I just want to know it'd be over quick. As I deal with it all, I can get comfortable knowing I won't have to suffer."

He believes it's the fact that he has made provisions for his death that keeps him healthy.

"I can go on with my life now," he says.

Even in the closest relationships, views of the suicide option are split. Costa's partner is Kyle Burton, 36, a Los Angeles special-event planner. Unlike Costa, he has no plans to try to control the timing of his death.

"I'm definitely going to kick until the end," he says.

Burton, whose condition was diagnosed in France seven years ago, says once he got past the "mental hell of the first two years," he started to feel better. He's now almost blind in one eye, suffers from Kaposi's sarcoma (cancerous skin lesions) and has been hospitalized with a collapsed lung, but he still feels excellent, he reports.

"I want to live," he says. "I'm not going to be the first one to jump in and kill myself. I might break down, but doctors can usually fix it."

Still, he stresses, he "100% supports" anyone who feels differently.

"The only difference between them and me is I have no set way out," he says. "But I know my mother will know when it's time to turn off the (life support) machine if it gets really bad. She knows I don't want to become a dribbling responsibility with no quality of life."

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