By Molly Parker
Staff Writer

With the help of a walker, 82-year-old Lavada Wiley navigates her Mount Pleasant home with spry ambition, dodging toys and attending to her two energetic grandchildren.

Some days, she contends, are better than others. One recent night she woke up gasping for air. That same morning, for the first time in months, she needed her daughter’s help getting down the stairs.

“I think it will be this way until the end,” she said. 

It’s been over a year since Wiley fell and broke her back. While in rehabilitation at Roper St. Francis Hospital, she fell again, suffering a second break.

When she came home, her daughter sought the assistance of Hospice of Charleston. For six months, a health care worker visited Wiley in her home every week, checking her vitals, offering support and monitoring her progress.

“I think each one marched down from heaven and fell out of the sky,” Wiley said of the health care workers.

But six months later, the hospice had to discontinue those services. According to Medicare guidelines, Wiley didn’t die soon enough, and she was no longer sick enough to qualify for in-home hospice care.  

Until the end

Studies suggest that people with hospice care live longer — a recent report published in the Journal of Pain and Symptom Management pegged it at 29 days on average — which the industry considers a bright spot.

It’s also a costly entitlement that’s helping to push Medicare deeper into the federal budget.

Since 1992, hospice beneficiaries doubled while Medicare expenditures increased
five-fold, according to a Rand Health study conducted for the Medicare Payment Advisory Committee. The hospice benefit cost taxpayers $8.2 billion in 2005, nearly three times what the program paid out in 2000.

That rapid growth has thrust hospice care into the spotlight. Hospices across the county have been ordered to pay back millions of dollars for exceeding reimbursement caps and others remain under the microscope as the Centers for Medicare and Medicaid Services conduct ongoing audits of patient files to determine whether they qualify for the benefit.

“They are putting a big focus on hospice patients that have not declined enough to the point where they are considered terminal anymore,” said Sharon Rinehart, a compliance officer with Hospice of Charleston. Having cared for more than 1,165 patients this last year,

Charleston’s oldest hospice organization is also one of the nation’s largest, opening it up to increased scrutiny, Rinehart said. Only 16% of hospices nationwide serve more than 100 patients in a given year.

Though not far off from previous years, the Hospice of Charleston in 2007 discharged 58 patients, including Wiley, who no longer met the criteria for eligibility. As a result of the cutback, 15 workers were laid off, leaving a staff of 109, Rinehart said.

Medicare requires two doctors to certify that a patient is not likely to live more than six months should the disease follow its normal course, and for the patients to agree they will not bill Medicaid for other medical services. The average length of stay under hospice care is 59 days, but some stay for much longer. 

“Telling a patient we can’t see them anymore, that has to be the hardest thing,”
 Rinehart said. “You just feel like they fall through the cracks.”

Families feel ‘abandoned’

It can also be a dizzying process for families.

Suzy and her six siblings were unsure where to turn as their father’s Alzheimer’s progressed into the eighth year. He could no longer walk on his own or get out of a chair unassisted. His memory escaped him and he grew more confused by the day. Their 82-year-old mother struggled to provide him the daily care he needed.

The family made an appointment with the Alzheimer’s Association in Charleston, which suggested the family contact Hospice of Charleston. In August, he became a hospice patient, but by Thanksgiving he no longer was. 

“They saw him about three to four weeks before he was discharged. I understood because I’m familiar with the Medicare system, but I knew it was frustrating for my mother. She couldn’t understand,” said Suzy, a former home health worker who asked that her last name not be used to protect the family’s privacy.

Just a few weeks ago, her 84-year-old father suffered a relapse and couldn’t get out of bed. Suzy again asked for hospice care, but emphasized that the family only wanted to access the service again if it could be permanent.

“I knew if they’d have to come in and pull out again, she’d feel abandoned,” Suzy said of her mother. 

A growing industry

Just in the past decade, the number of hospice patients nationwide ballooned 162%, from about 495,000 in 1997 to 1.3 million in 2006, according to the National Hospice and Palliative Care Organization.

The organization estimates that about 36% of all nationwide deaths in 2006 were under the care of a hospice program, with nearly three-quarters of those patients staying in their home until the end.

Hospice organizations also have sprouted across the country, almost all of them small, nonprofit organizations serving fewer than 100 patients per year. In 1986, there were less than 500 hospice organizations, compared to 3,000 two decades later. In Charleston County, there are seven programs licensed with the Department of Health and Environmental Control.

The hospice growth largely is attributed to the Medicare Hospice Benefit that Congress enacted in 1982, by far the dominate source of funding for hospices. Nearly 84% of patients are Medicare recipients, while a very small amount of patients are covered by Medicaid, private insurance, personal finances or charity care.

Further exasperating the financial situation, the makeup of the hospice population has changed. At the origin of the hospice community in the 1970s, almost all patients had cancer and a terminal diagnosis.

Today, cancer patients account for less than half of the people served by hospices. Most have non-cancer related health problems ranging from heart disease to dementia to HIV and AIDS. Those diseases generally claim lives at a slower rate, hospice providers say.

“Alzheimer’s or related dementia patients have a far less predictable decline,” said Lynn Ivey, administrator for Columbia-based Lutheran Hospice, which serves patients across the state. “They outlive the normal actuarial table, and they’re spending a longer time under hospice care.”

Exceeding the cap

Late last year, Lutheran Hospice was among 200 others nationwide ordered to pay back a combined $166 million for exceeding reimbursement caps for patients, according to the Medicare Payment Advisory Commission.

Since 1998, there have been no limits on how many days a patient can receive hospice care, but the government caps the amount it will reimburse hospices for their services based primarily on an actuarial table for life expectancy. Last year, that amount was around $21,000, or essentially $131 per day for a 165-day stay.

Lutheran’s bill, delivered in a September letter, totaled $314,537, according to information provided by the Centers for Medicare and Medicaid Services through a Freedom of Information Act request. 

“It was significant,” Ivey said, noting that the charge is retroactive and the hospice has already paid for the staff, medicine and other expenses that can’t be taken back.

“We’re fortunate to be part of a bigger operation, so it was not as crippling for our operation as some others.”

Still, she said, the hospice did not find it appropriate to discharge patients it deemed terminal just because they did not die based on a government timeline. These issues “take away from where want to focus,” she said. Around the same time, Lutheran closed its Summerville satellite office and eliminated one position, but that was unrelated to this payment, Ivey said.

“It feels like a catch-22 for us,” she said. “It is very frustrating to have patients we know are terminally ill, but we have to really struggle financially to take care of them.”

While acknowledging the government’s need to keep costs in check, Ivey also pointed to a November Duke University study that found hospice reduced Medicare spending by an average of $2,309 per person compared to normal care that may require expensive hospitalizations near death.

“The hospice benefit appears to be that rare situation in health care where something that improves quality of life also saves money,” said Don Taylor, the study’s lead author and an assistant professor of public policy at Duke’s Sanford Institute of Public Policy.

As for Wiley, the benefit is less analytical. She wants to spend her final days — how ever long that may be — with her family, watching her grandchildren grow up.

“I think most anybody would like to stay in their home as opposed to anywhere else,” she said.

For Scott, her daughter, the hospice care meant peace of mind.

“It was just a lot of comfort to know everything will be taken care of and it’s a real shame the government is cracking down.”

Molly Parker is a staff writer for the Business Journal. E-mail her at mparker@scbiznews.com.

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