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         Jonathan: A Planned Death

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(Note: The names in this story have been changed.)

Jonathan was a survivor. For nearly 15 years, he had coped with the tremendous emotional and physical burdens of living with HIV and liver disease. But when his longtime physician assured him that medicine could no longer offer him hope of a life without pain or incapacity, Jonathan decided it was time to die on his terms.

Pull QuoteJonathan, a New York theater producer, was 45 when he died in the fall of 1996. Although he had AIDS, it was end-stage liver failure that accelerated his death. Because he was HIV-positive, Jonathan wasn't eligible for a liver transplant.

Fighting Back

For 10 years, Jonathan lived his life to the fullest despite two serious diseases. During that period he would have only occasional flare-ups, but he would always eventually recover. In the last several years of his life, however, he was increasingly coping with the effects of liver and HIV disease.

Besides jaundice, nausea, and the side effects from HIV medication, the most persistent and debilitating symptom of Jonathan's illnesses was a condition called hepatic encephalopathy. Because of poor liver function, he was unable to process the normal amounts of ammonia his body would produce. This condition affects brain function and would cause extreme confusion, leaving Jonathan incapacitated. He became extremely lethargic and disoriented, unable to tell time or use a telephone.

The only treatment available was a syrupy medication call Enulose, that when taken would induce diarrhea and slowly eliminate the ammonia from Jonathan's system.

"That is what his quality of life had been reduced to, living between the bedroom and bathroom. . . it was horrible for him," says Marty, his friend and lover. Jonathan was becoming more and more dependent on others, unable to use eating utensils or leave his apartment alone.

The Will to Live

PhotoHe would go through these periods, but then he would bounce back. "Jonathan came back from death's door at least five times," says Marty. "He would lose weight and begin to waste, then he would become vital again, returning to the gym and some semblance of a normal life." Marty says he "always had great hopes that Jonathan would survive, because he had shown such an amazing will to live and a great ability to recover."

But in the last year or so of Jonathan's life, those hopes started to fade. For two months in early 1996, Jonathan was completely bedridden; a close friend cared for him during the day and Marty cared for him at night. Although he recovered, Jonathan acknowledged that his liver was failing. He spent two weeks in the hospital to bring his ammonia level down, and when he returned home, it was only with nursing supervision. The hepatic encephalopathy had become chronic, sending him into near-comatose states if he did not constantly evacuate the ammonia from his system.

Jonathan didn't want to die. He kept hoping his body could maintain the fight. When he was thinking clearly and was relatively healthy, he didn't focus on death. "The bar kept being set lower" as Jonathan's illness progressed, says Marty. Jonathan was willing to continue living if he could get out of the apartment once a week and maybe see a film. "Simple things that I would take for granted gave him a reason to live and fight."

Coming to Terms

But as the effects of his disease worsened, his quality of life became increasingly intolerable. Two weeks before he died, he woke up one night and asked Marty what had happened to him that year. "It was as if he had been sleepwalking through the previous year. He couldn't remember how his life had been reduced to this."

Pull QuoteWhen Jonathan came to terms with his condition, he decided to meet with his doctor with Marty present. Jonathan wanted to discuss assisted suicide with his physician, who had been his caretaker for a decade. Jonathan's physician confirmed a bleak prognosis. Jonathan was in clinical liver failure; he wasn't going to recover. Within a few months he would slip into a coma and die; he could suffer. Jonathan wanted his physician to help him die. He didn't want to linger or lose control. Jonathan requested a prescription for Seconal, a barbiturate, to have on hand as a sort of insurance policy if things became worse. His physician complied; he said he was there to help ease suffering. He wrote Jonathan a prescription and Jonathan immediately had it filled.

A month before he died, Jonathan once again went to the doctor to get one final confirmation of his terminal diagnosis. After that, Jonathan began planning his death. He organized his financial affairs; gave his piano to his nephew; and began working on his will. His medical power of attorney already lay with Marty and his mother.

The weekend before he died, he called his caseworker and completed his will. Jonathan handed Marty his checkbook; he worked out arrangements so Marty could take over his apartment; and he made sure Marty would keep his cat. He called his mother to express his wish to be cremated and for there to be no memorial service. The process left Marty shaken. "It was so final, so courageous and sad."

Saying Goodbye

Marty called Jonathan's friends and they came over. His mother flew up from Florida. Jonathan didn't tell them he was going to end his life; he just wanted to see them a last time and offer his own goodbye. It was his own way of having a living memorial.

Pull QuoteThe day before Jonathan ended his life, he was so incapacitated he went to his doctor's office in his pajamas. He was ready to die; he intended to go on a morphine drip later that week and end his life at home. He also wanted to get a do not resuscitate order (DNR). He was worried that if he fell into a coma, the nursing aides who were caring for him at home would call an ambulance and he would be resuscitated. Jonathan and Marty stood in the doctor's office for 45 minutes while the staff looked for the order. The second volume of Jonathan's phonebook-thick medical file had been misplaced. They eventually had a new DNR faxed from a hospital and Jonathan made Marty copy it twice. They put a copy on the refrigerator and one in his desk in an envelope.

The next day Jonathan called Marty at work and told him to come over; he was going to ingest the Seconal. Jonathan had decided to forego the drip because he was afraid of lingering for days and didn't want people standing around his bed, changing soiled linen, watching him die. Marty rushed back to the apartment. But when he arrived, Jonathan had already taken the Seconal and was fast asleep, slipping into unconsciousness. Another friend was there. He and Marty sat in the living room, listening to Jonathan snore. The only thing to do was wait for Jonathan to die.

A Peaceful Death

Jonathan seemed peaceful. His liver disease had made him a chronic insomniac. Marty hadn't seen Jonathan sleep so soundly in more than two years. Jonathan stopped breathing six hours later, with his cat sleeping next to him on the bed. Jonathan died the way he wanted -- not in a hospital room, suffering, but in his own home with people who loved him.

When Jonathan felt that his life had deteriorated beyond recognition and that all hope of recovery had been taken from him, he decided to take control over the one final thing that he really could control: his own death. The day after Jonathan died, Marty went through one of Jonathan's jackets and found a yellow piece of paper. Jonathan had started keeping lists to bring to the doctor because he was forgetting so many things. On the top of the paper was the phrase "quality of life." It was underlined.

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REAL LIFE STORIES
Mickey: Learning from Death | Joyce & Charles: The Hospice Alternative
Sabina & Perry: A Patient's Wish | Jonathan: A Planned Death
Mary & Warren: Coping with a Long-Term Illness | Claire & Don: One Family's Struggle

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