THE '50S HIT TUNE "VOLARE" WAS playing over the speaker in his Upstate New York hospital room late last July, but Jimmy Wigmore heard nothing. Born with Down syndrome 56 years ago, Wigmore, who died in August, had been in a deep coma since June 20, when he choked on food and was deprived of oxygen for 22 minutes.

That he could no longer see, speak or move voluntarily didn't stop his niece Renée Amellio, 31, from bravely keeping up her end of the conversation during her frequent visits, chattering about family goings-on. Still, the encounters were so emotionally draining that Jimmy's only sibling, Renée's mother, Margaret, 52, couldn't bear to enter his hospital room. "I wouldn't want to see another family have to go through something like this," says Margaret, a New York City home-care monitor for the elderly. "I just don't want others to go through this."

For almost two months, Jimmy Wigmore remained at a crossroads. Unconscious, he barely clung to life, depending on a machine to breathe and on intravenous liquids for nourishment. Although doctors at Horton Medical Center in Middletown, N.Y., had placed his chance of recovery at close to zero, Wigmore was not pronounced technically brain-dead because tests still showed minimal neurological function. As a result, a state judge in Goshen, N.Y., blocked the family's application to remove Wigmore from life support, citing a state law that allows family members to make life-and-death medical decisions only when they can prove they are acting according to the patient's expressed wishes. But Wigmore, whose mental capacity was that of a 3-year-old, could never have communicated such information.

Now, even after Wigmore's death by asphyxiation from fluid in his lungs, Renée, a Manhattan public relations account executive, is doggedly phoning, writing and visiting New York State legislators to lobby for a new law allowing relatives to remove life support from comatose patients even though they haven't left written instructions. "It needs to be decided on a case-by-case basis," says Renée. "It needs to be individualized."

Many medical ethicists support the Amellios' effort to give families and physicians more discretion in New York (one of a few states lacking such legislation). "Wigmore's case obviously violates all common sense," says Dr. Ron Cranford, a clinical ethicist in Minneapolis. But some conservative religious groups insist the state is right to preserve life even in a diminished form. "When we [give] someone the power to make decisions over whether someone else will live or die, we put ourselves on a dangerous, slippery slope," says David Zwiebel of Agudath Israel of America, a national Orthodox Jewish social service agency.

Ironically, for more than 30 years Wigmore's whereabouts were unknown to his family. He was just 4 when his late mother, Emma, a New York housewife whose husband had died earlier that year, decided to send him to live in a state institution. "There were pictures [of Jimmy], but we didn't talk about him," says Margaret. "I guess my mother couldn't hack it taking care of him."

Then in 1974, a friend of Margaret's took a job with the state mental health agency. With her help, Margaret located her brother at a state facility later that year. "I was always told Jimmy was a vegetable," she says. "Then I spoke to someone [at the hospital], and they asked me if I wanted to speak to him. I was unaware that he was even capable of talking."

The Amellios discovered the gentle charms of their lost relative on visits upstate over the course of the next two decades. "Jimmy was very childlike," says a counselor at the Middletown group home where Wigmore was eventually placed by his sister. "He loved to dance, he loved rock and roll. He also loved to wear stocking caps and carry around a big radio." And he liked to be taken to McDonald's for hamburgers and hot coffee. "It had to be hot," says Margaret. Renée recalls, "When we'd get to [the group home], he'd bring us over and introduce us to all his friends. He was very protective of us."

Wigmore was moved to a new group home in Port Jervis, N.Y., last March, when he needed more care because of his age. It was there that he collapsed in June. By the time he arrived at Horton Medical Center, connected to an artificial respirator, he had fallen into a coma. At a cost to state taxpayers of $6,672 a day, nurses turned Wigmore in his bed to prevent him from developing bedsores and moistened the gauze pads that protected his open eyes. "When we went to court, we asked that Jimmy be considered something like a child," says Dr. Norman Stein, Horton's chief of medicine. "But the judge had no choice but to issue the directive that he did."

For the Amellios, the fight is just beginning. "A person should be able to feel and to laugh and to smile and to cry," says Renée. "Somebody like Jimmy—being kept in the status quo by life support—it's preposterous."

PATRICK ROGERS
RON ARIAS in Middletown

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  • Ron Arias.