ALS patient booted from hospice program is accepted into another
In the meantime, family racked up heavy debt
By Robert Channick | Special to the Tribune
8:35 PM CDT, May 21, 2008

Paralyzed from the neck down with a degenerative and fatal disease, Tom Hugh was in hospice care for more than three years until a Miami-based company ended the medical services he had been receiving in his Elgin home.

The Medicare-funded medication and nursing visits, intended to provide comfort during the last six months of life, stopped in March because Hugh had managed to hang on despite the progression of amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

"They told us he's not deteriorating fast enough to require hospice care," said Sandy Hugh, his wife of 38 years. "To have most of the medical covered and then all of a sudden have all this stuff pulled out from under you, it's like devastation."

Hugh, 60, was among the estimated 1 percent or 2 percent of the nation's hospice patients who are discharged alive, officials said.



The former truck driver was re-examined this month by a second hospice-care agency, which determined he is eligible for Medicare-funded services. But his family now has thousands of dollars in expenses for the month he was not in hospice care.

Launched in 1983 for patients in the final stages of terminal illness, hospice care is funded through Medicare and provided by an approved public agency or private company. More than 1 million U.S. residents are expected to begin receiving hospice care this year, with an average stay of about two months, according to the National Hospice and Palliative Care Organization in Virginia.

Hugh had worked for 25 years delivering snacks to Chicago-area convenience stores before beginning a second career in 1995 as a bus driver for Elgin-based Unit School District 46.

He was found to have ALS in 2001. The typical prognosis is that patients die in two to five years.

In 2004, Hugh was referred by a doctor to an in-home program through VITAS Innovative Hospice Care, the nation's largest for-profit provider of hospice care.

The company's Lombard office sent nurses and health-care aides to Hugh's home, provided equipment and medication, and covered other expenses, which were reimbursed by Medicare at $135 a day, or about $4,000 a month.

But under federal guidelines, eligibility for Medicare-funded hospice care requires a doctor's certification that a patient's illness is likely to be terminal within six months.

In March, VITAS informed Hugh's family he no longer met the requirements, said Mark Cohen, a spokesman for VITAS. The services ended within weeks. The no-cost medical equipment was replaced with rental products.

At the same time, the family-owned electric wheelchair broke down, requiring a $1,000 repair, said Sandy Hugh, who works in human resources for the Grand Victoria Casino in Elgin.

"It was not a good month," she said.

Hugh requires a special bed and pureed food, and he depends on an ever-attentive family.

The family turned to the Les Turner ALS Foundation in Skokie for help, and found an ally in Ileane Mindel, a longtime nurse consultant for the non-profit group.

Mindel said it is difficult to predict the progression of ALS, which strikes about 5,600 people a year and affects about 30,000 U.S. residents.

"There is no typical for ALS," Mindel said. "Everybody with this disease has their own journey, and nobody follows the same path. I've seen patients die within a year of their diagnosis and I've had patients last 12 years."

Mindel steered the family to the Hospice of Northeastern Illinois, a 26-year-old non-profit organization based in Barrington that has eight ALS patients in its program. Medical staff examined him this month and determined Hugh was hospice-eligible, admitted him into their care and certified him for full Medicare benefits.

Officials cannot explain why one provider would end services while another agreed to provide care, except to say that predicting how long an ALS patient will live is difficult.

"We don't know why he wound up out of the other hospice and to us, that's not our business," said Rose Lewandowski, clinical team manager at Hospice of Northeastern Illinois. "He met criteria for admission, and we're going to carry him along to the best of our abilities, as long as he has."

Facing bills for the month that Hugh was without hospice care and other expenses, his family has planned a benefit May 31 at Elgin Lanes, 401 Shepard Drive, where Hugh once bowled.

His son Mike, 36, of Elgin organized the event.

"As a family, we're not giving up on him," he said.

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