Diagnosed as terminal, he was too <i> well </i> for Medicare : Living and Dying in Dignity

It isn’t fair. Jerome Gilman, whom relatives regarded as “slow,” had worked hard all of his life, had cared for himself and had managed to put aside a little money meant as an inheritance for two nieces he loved dearly.

Although unable to read or even to write his own name when he first came to Los Angeles, he got a job as a custodian for Pacific Telephone Co. and held it for 35 years, asking for nothing and expecting nothing from those around him.

He was considered a quiet and gentle man, willing to accept without rancor the tight parameters life had imposed on his abilities, coping in his own way with the slownesses that would categorize him to the end.

When he retired in 1982 at age 65, he still took care of himself, living alone off Social Security and a small pension that fed him, paid the rent and added a few bucks now and again to a “nest egg” that had grown to $8,000.

Life for Jerome Gilman was what he had made of it, an existence of dignity from which he had extracted all that he could given the circumstances of his limitations.

And then he began to die.

Everyone dies, and I’m not going to sit here and belabor the inequity of a short retirement.

But to be deprived of final dignity by both dark caprice and the dispassion of a system that regards death as only another financial burden is a pain Jerome Gilman, perhaps more than most, didn’t deserve.

I first heard of him two weeks ago through his cousin, Charlotte Stein of Sepulveda. Jerome is dying of cancer, she wrote, but is considered “too well” for a Medicare terminal hospice. She added: “There is something terribly wrong with such logic.”

I met with Charlotte, a small (4-foot-11), feisty woman of 63 who was managing Jerome’s last days and was furious that a man she regarded more as a brother than a cousin was being deprived of tranquility in his final hours of life.

“It isn’t right,” she said, gesturing and pacing the living room of her small home. “A tumor is choking out his life and nobody gives a damn except for the money they can make off of him. What the hell kind of system is that?”

She was angry, not only at the system as it functioned now, but also at how it had functioned in Jerome’s youth when he was confined, unfairly she thinks, to a home for the “feebleminded” and never even educated.

And now this.

Jerome first became ill last September. A cancerous tumor was removed from his jaw. Medicare paid for part of the surgery and hospitalization, the rest came out of the $8,000 he had put aside for his nieces.

But it wasn’t over.

An old injury from an automobile accident, possibly aggravated by the surgery, was paralyzing his arms and legs. He was unable to feed himself or even display the one ability of which he was so proud. He couldn’t sign his own name anymore.

Charlotte Stein was given power of attorney last October. Jerome continued to cling to the last ribbons of dignity, living a marginal existence at home with a woman he hired at $800 a month. His nest egg had dwindled to $5,000.

“Even so,” Charlotte said, “Jerome never gave up on life, even though life had given up on him. He was a gentle, good-humored man in the beginning, and he didn’t change at the end.”

The end began on April 1. A cancerous tumor was discovered in his throat. It was diagnosed as terminal. A tracheotomy was performed to help him breathe. He was fed through a tube.

“Then I got a call from a social worker saying that Jerome’s benefits had run out,” Charlotte said, reliving the moment with a quieter rage. “Medicare wouldn’t pay for his hospitalization anymore.

“The social worker suggested he be placed in a Medicare terminal hospice but then later called and said that, because physicians had inserted a gastronomy tube to feed him, he was too well for a Medicare hospice!”

Charlotte stopped pacing to stare. She could not quite believe it herself.

“A man diagnosed as terminal too well for Medicare? What the hell is this?”

The hospital, meanwhile, was demanding that Jerome be moved. Charlotte found a private hospice that would take him in for $1,000 down. The others wanted considerably more.

By now, Jerome’s savings, the money he wanted to leave for his nieces, was down to $3,500. Medi-Cal would assume financial responsibility when the $3,500 was gone but wanted his pension and Social Security money in exchange.

Jerome could keep $35 a month.

“It’s sad,” Charlotte said as the interview wound down. “Jerome tried so hard, and now he’s just a piece of meat. He came into life with very little, but he used every damned bit of what he had. He doesn’t deserve this.”

The last I heard from Charlotte was yesterday. A bitter little message was left with our switchboard.

The message said: “Jerome Gilman was so well that he died yesterday morning. The funeral is today.”

Charlotte was right. He deserved dignity at the end.