TAMPA — Larry Brazil was a patient at University Community Hospital for almost three years. Tameka Campbell was at Tampa General Hospital for five years.
Together, they had bills of nearly $11 million that no private or public insurance plan will cover. That pricey care did not cure them; it kept them breathing on ventilator machines.
Brazil and Campbell could have been cared for at a fraction of the cost — if Florida had the right kind of nursing facilities.
State records indicate that fewer than two dozen nursing homes — including three in the Tampa Bay area — out of about 700 statewide care for ventilator patients. But some only care for children or patients who can likely be weaned off the machines. Only a handful take new patients, and their ranks are dwindling.
"The bottom line is, ventilator care is real expensive," said Erwin Bodo, a consultant and former head of the Florida Association of Homes and Services for the Aging, which represents long-term care facilities. "Most facilities literally cannot afford to take a ventilator case."
Other states pay nursing homes more to care for ventilator patients, but not Florida.
So, in a state where uninsured people go without even basic care, millions of dollars go to ventilator care for people who don't need to be in hospitals — and who might not even want to be there.
"I think it's a tragedy on all sides — for the patients, the families that have to make difficult decisions and for the facilities," Dr. David Weiland, vice president of medical affairs of St. Petersburg's Bayfront Medical Center, said of the lack of long-term ventilator beds. "Sadly, our state has decided not to prioritize this."
No one knows how many patients fall into this category, but it's an issue every hospital struggles with, said Weiland. He estimates Bayfront has three or four patients a year who need long-term ventilator care.
Some get lucky and find a Florida facility, though not always one close to home. Others are sent out of state. A few have families with the resources to care for them at home.
Campbell died while at Tampa General in 2009 at age 29, leaving behind a $9.2 million bill that the hospital is trying in court to collect from her estate.
Brazil, whose outstanding bill totaled about $1.7 million, according to his family, left the hospital in late 2009 and was cared for at home for nearly two years before he died in July. He was 79.
"It's a real tragedy," his daughter, Diane Noriega, said of the shortage of ventilator facilities. "We searched everywhere, but could not find anything."
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How do ventilator patients land in the hospital for so long?
Usually, it starts with a medical emergency. Campbell was admitted to Tampa General in 2004 and was found to have an irreversible nervous system disease. Brazil was taken to University Community Hospital in December 2006 with respiratory failure.
In both cases, their conditions stabilized to a point where doctors determined they no longer needed to be in the hospital. But they needed full-time ventilators. The hospitals could not discharge them without finding an appropriate placement.
Court records show that TGH found no facilities in the state that would take Campbell. They found one in Ohio, but her mother refused to send her. Similarly, UCH could find no facilities that were acceptable to the Brazil family.
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Miami Jewish Health Systems is among the nursing homes that has stopped taking chronic ventilator patients.
Chief operating officer Morris Funk said that his 462-bed nursing home once had upward of 20 ventilator patients, but now has just two, and hasn't accepted a new ventilator patient in the three years he has been there.
He said current Medicaid reimbursement rates don't even cover the cost of care for regular residents at the home, let alone a ventilator patient whose care requires expensive equipment and round-the-clock staffing.
Medicaid is both a federal and state program, and so reimbursement rates vary. Bodo, the consultant, said that in 1985, Florida nursing homes received supplemental payments from the state for ventilator patients. But the extra payments ended soon after they started, a victim of state budget cuts.
A 2003 study commissioned by the state health department recommended restoring the supplements, a move supported by hospitals around the state. The report concluded that such payments would save money in the long term, but they were never reinstated.
Funk estimates it costs twice as much for a nursing home to care for a ventilator patient than a regular resident. But that's still far less than hospital care.
At $9.2 million over five years, Campbell's care at TGH cost about $5,000 a day.
The average state nursing home cost per day is $223; double that, and a five-year tally would be $813,950 (although that figure doesn't include all the medical care Campbell received).
But at a time when lawmakers are under pressure to cut Medicaid even more, Funk thinks it unlikely the supplements will come back.
"I feel terrible that as a caregiver and provider I have to turn down folks who need us and want to be here," he said. "We get inquiries all the time. After a while, they'll stop asking."
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How can it make sense to keep these patients in hospitals?
Bodo said that from the state's perspective, it's cheaper to cover a Medicaid patient's stay in the hospital, since the program stops paying hospitals after 45 days. But Medicaid covers nursing home stays for as long as they last.
Who pays when the hospital stay goes beyond 45 days?
Not the state — at least not directly. Hospitals often have no way to collect such bills, and have to write them off as charity care.
"But the problem that should bother everybody is that someone is still going to pay for that care. We end up paying," Bodo said, referring to taxpayers in general.
"This is really, really bad economics."
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After a judge ruled that UCH could send Larry Brazil to a nursing home out of state, his family took him home.
They brought in expensive equipment — some of it rented, some purchased with the help of Medicare and Veterans Affairs — and trained several family members to use it.
"At first, we were overwhelmed," said Noriega, who took several months off of work to care for her father. "We had no medical training. He was depending on our expertise and I was scared to death."
There were crises the family couldn't handle. Noriega said Brazil had to be taken to the hospital seven or eight times, for up to 10 days.
Brazil died at home on July 3, with his wife, Doris, by his side.
Richard Martin can be reached at firstname.lastname@example.org or (813) 226-3322.