(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
Jonathan, 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.
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
He 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."
When 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
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."
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.
The 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.