Larry Brazil has been a patient at University Community Hospital for nearly 1,000 days.
He has racked up a hospital bill - in addition to his doctors' fees - of more than $1.7 million, his family says.
His mind is alert, but he can't walk or talk and must use a ventilator to breathe 24 hours a day, seven days a week.
But soon the 77-year-old retired printer and dump truck driver will be discharged under a court order, ending the hospital's unprecedented two-year effort to move him and taking his family into uncertain territory as they attempt to care for him at home.
Lengthy stays and million-dollar hospital bills are not unheard of. But Brazil's case raises serious questions about health care access and costs. How can one patient remain in the hospital for so long - likely at taxpayers' expense - at a time when millions of others struggle to get health care?
And why is it so difficult for families like the Brazils to find good options for long-term care outside the hospital?
Brazil's case "is an anomaly, but it's an expensive anomaly," said Jay Wolfson, an expert on health policy at the University of South Florida.
Larry Brazil spent Christmas 2006 at the small home in North Tampa where he and and his wife, Doris, have lived for 50 years, raising four children. He even played and danced with his great-grandchildren.
But days later, he told Doris he was having trouble breathing. She is legally blind and cannot drive, so she called an ambulance. He was admitted to UCH on Dec. 30, where he was treated for acute and chronic respiratory failure. The family said he had fluid in his lungs and developed pneumonia; the hospital would not talk about his medical condition, citing privacy laws.
Brazil was placed on a ventilator at night; eventually, he needed it full-time.
By May of 2007, according to court documents, Brazil's physicians determined that his condition had stabilized, he would not improve, and so should leave the hospital. Doctors said he should be cared for at home or in a skilled nursing facility. With that determination made, the family was told that Medicare would no longer pay for his hospital stay.
The hospital found beds in at least two facilities, one in Miami and another in Sarasota. But the family said no.
"We felt he could not be discharged. We just felt it wasn't safe," Doris Brazil said.
The family wanted Brazil closer to home, where relatives - most of whom live in Hillsborough County - could see him every day and help care for him.
The couple's daughter Diane Noriega, 50, said she has contacted many nearby nursing facilities, only to find that they either had no space, do not take patients on ventilators or only take patients who can be eventually weaned from the ventilator. The family and hospital officials agree Brazil likely cannot be weaned.
The hospital acknowledges there aren't many places for ventilator patients to go. Dr. Brad Bjornstad, chief medical officer, said such patients are either cared for at home or transferred to states with more available facilities, such as Illinois or Pennsylvania.
The family didn't consider bringing Brazil home, because Doris Brazil, 72, has heart problems and diabetes. Nor did they want him far from home.
"We were not refusing to move him," Noriega said. "There's just no place we can find to send him."
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Over the course of his hospital stay, Brazil has lost the strength to walk and now has only limited use of his hands, his family said.
Though he suffers from some dementia, he is aware of what's going on around him. His eyes are expressive, showing excitement when someone enters the room. He answers questions with a nod or shake of his head.
Family and friends visit him twice a day, every day. Pictures line a wall of his room, including one showing Brazil during his glory days as a local car racing champion.
"How are you feeling?" Noriega asked her father on a recent visit. "Do you want to go home? Are you ready to go home?"
Brazil nods and mouths the word, "home."
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By 2009, the hospital decided it had to do something it never had done to get Larry Brazil out of UCH. Bjornstad said the hospital sued Doris Brazil for three main reasons:
- The family would not cooperate with the discharge.
- Brazil's continued stay at the hospital could prevent other needy patients from getting care there.
- The hospital was spending money it had no hope of recovering.
"Face the facts, we're probably not going to be paid for a very large chunk of the care," Bjornstad said. "That means that's dollars that are not available to potentially expand services, to buy equipment, which is what not-for-profit hospitals use their dollars for."
On May 29, the hospital asked the courts to force Doris Brazil to have her husband discharged, and if she refused, to allow UCH to transfer Brazil without her consent.
"We don't normally try to get confrontational with families and patients," Bjornstad said. "But we had no other choice."
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On June 4, a circuit court judge ruled in the hospital's favor, and the family's attorneys appealed. But on Aug. 6, both sides agreed to discharge Brazil in September.
Noriega said her family couldn't afford a court fight. "At that point, we just knew that we had to do what the court order said," she said.
The agreement also requires the family to complete a medical assistance/charity application financial statement, presumably so the hospital can write off the bill as charity care, which is ultimately paid for by taxpayers.
Noriega says that the family didn't intend to be uncooperative. Still, she admits they didn't want to face the ordeal of moving her father from a situation they trusted into the unknown.
"When you don't accept things, you sometimes ignore them," Noriega said.
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Lengthy patient stays are rare, but not unheard of. Tampa General Hospital, for example, has patients who have been there for more than 100 days; one has been there for more than 1,000 days, hospital spokesman John Dunn said.
But such cases raise issues about the costs and availability of care, said Wolfson, of USF.
Besides the hefty bill Brazil will leave behind, there are other costs to the community, he said. A prolonged stay at a hospital for a patient that needs only advanced nursing care, for example, could deprive others of needed care there.
He said since hospitals can't discharge patients without consent, they are sometimes left to take patient's families to court as a last resort. "And you don't want to get the courts involved in patient care," he said.
But Wolfson said the case also illustrates the dilemma of families like the Brazils having few good options for care outside the hospital.
Nursing homes in Florida are often full, and "they don't have capacity to care for respirator patients," he said.
And caring for someone at home has become tougher because home health providers have seen their Medicare reimbursement rates reduced in recent years, at the urging of hospitals and nursing homes, Wolfson said.
Ideally, Wolfson said, there should be more room at nursing facilities and better reimbursement for those who provide care at home. As the baby boomers age and demand grows, he expects both situations to improve.
But not in time to help Larry Brazil.
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Caring for an elderly man who can do virtually nothing for himself and who must be tethered to a breathing machine at all times will not be easy.
The work is far too physical for Doris alone. So the family is cobbling together a care team that includes his four children, five grandchildren, two great-grandchildren, plus friends.
Their home will be equipped with "two of everything," said Pat Rager of All American Medical Equipment Inc., who was at the hospital recently with one of two ventilators that will be brought to the family's 1,000-square-foot home. A hospital bed will be brought in, and the family also will purchase a generator in case of power failures.
A home health nurse will visit every day for the first week to make sure the family is properly trained, Noriega said. After that, they expect periodic visits from the nurse and Brazil's doctor.
Noriega isn't sure what Medicare or her father's Blue Cross/Blue Shield supplemental insurance will cover. The family is also applying for Medicaid, and will see how far Brazil's Social Security, retirement and small VA pension will go.
"It's a task we may not be able to do," said Noriega, who has moved back to her parents' home with her son to help out.
"But we owe it to him to try."
Richard Martin can be reached at firstname.lastname@example.org or (727) 893-8330.