GPC:Hospital for special care.? Quality of Life okay for most.

New York Times June 23 2014

NEW BRITAIN, CONN. — Propped up in a hospital bed, a 75-year-old man with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, must make an agonizing decision. Should he keep struggling until the illness inevitably kills him, dependent on a ventilator, unable to walk or eat or move? Or should he choose a day and a time to have the ventilator disconnected, and die?

The man, who asked not to be identified to protect his privacy, was a patient at the Hospital for Special Care here, one of 400 long-term acute care hospitals in the United States. These are no ordinary hospitals: Critically ill patients, sometimes unresponsive or in comas, may live here for months, even years, sustained by respirators and feeding tubes. Some, especially those recovering from accidents, eventually will leave. Others will be here for the rest of their lives.

These facilities often are tucked out of sight, and even many doctors do not know they exist. This one sits on the edge of a decaying industrial town.

“People don’t want to think about us,” said Dr. Paul Scalise, chief of medicine at the Hospital for Special Care. “I don’t want to think about us, either.”

But more experts and policy makers are likely to have to start thinking about them soon. The cost of long-term acute care is substantial, about $26 billion a year in the United States, and by one estimate the number of patients in these facilities has more than tripled in the past decade to 380,000.

There are two reasons, said Dr. Judith Nelson, a critical care specialist at Mount Sinai Hospital.

The population is aging, increasing the chances of a catastrophic illness like blood sepsis or acute respiratory distress syndrome that eventually may land patients in a hospital like this one. And doctors are getting better at keeping people alive when they are in intensive care. The result is an increase in the number of highly dependent patients who survive the intensive care unit but must remain on a respirator. They cannot go home or to a rehabilitation facility. Many are too sick even for a nursing home. Long-term acute care is “where you go when you survive but you don’t recover,” Dr. Nelson said.

And yet this Connecticut hospital is not a place of unrelieved misery. The campus is leafy and green, and the windows are wide and filled with sunlight. Paintings by residents and local artists decorate the walls. On nice days patients can visit a landscaped garden along a path of paving stones and lined with respirator hookups.

Dedicated doctors and staff tend cheerfully to patients who require nearly constant care, some of whom are managing to make lives for themselves. Recently two patients with muscular dystrophy, both in wheelchairs, married in the courtyard outside. The bride was given away by her weeping father.

“It’s remarkable,” said Dr. John Votto, the hospital’s chief executive. “You are on a ventilator, you can’t move, you can’t walk, you can’t breathe. You and I would say, ‘Oh my God, you must have this terrible quality of life.’ But they really don’t. Honestly, many are quite happy.”
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Tammy Bohmer, a nurse, assisting Murray Zack with telephone conversation with his son. The outlook for patients usually isn’t hopeful, but the hospital is not a place of unrelieved misery. Credit Richard Gershon for The New York Times

Often they arrive here because ordinary hospitals do not want to keep them. Reimbursement is tied to diagnosis and treatment, but most of these patients no longer need a diagnosis; they need treatment and care. Most start out being covered by Medicare, but when that benefit runs out — at 150 days — long-term-care hospitals either discharge the patients anyway or Medicaid usually takes over.

Medicare, concerned about the high price of long-term acute care hospitals, is trying to trim reimbursements. Nearly half of the $7.3 billion cut from its budget by the Affordable Care Act came from reductions in payments to these facilities. Medicare officials argue that perhaps these patients could stay in regular hospitals or nursing homes instead, and say it’s unclear whether care is better in long-term acute care hospitals.

But nobody knows what “better” means for these patients, and that makes it difficult to assess how well these facilities are operating.

“We don’t know how to measure quality,” said Dr. Jeremy Kahn, associate professor of critical care, medicine and health policy in the University of Pittsburgh School of Medicine. “The current Medicare quality measures are borrowed from I.C.U.s. Whether they apply in long-term acute care hospitals is unknown.”

The Hospital for Special Care is unusual because 70 percent of its patients are on Medicaid. Yet just 30 percent were on Medicaid when they were admitted, Dr. Votto said. Even with government support, many families are financially devastated when a relative lands in one of these hospitals.

The facility may be several hours from a family’s home, so relatives end up staying away from their jobs, living in hotels to be near a parent, child or spouse. Some deplete their life savings. “It’s a tragedy, a real tragedy,” said Dr. Christopher Cox, a critical care specialist at Duke University School of Medicine. “A heartbreaking situation.”

The road to a long-term acute care hospital often starts in an I.C.U. somewhere else when a doctor suggests placing a tube in a patient’s throat so he or she can be hooked up to a ventilator. “Once that happens, your future is not bright, unless you are quite young,” Dr. Nelson said.
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A ceiling tile above a patient’s bed at the hospital was replaced by a scenic image. Credit Richard Gershon for The New York Times

Deciding to have a tracheotomy should be a difficult decision for family members, she added. But, she said, “people misunderstand — they think it is a sign of hope.” Few doctors discuss the likely consequences or the alternatives.

“It could be that physicians are not confident in their prognosis and therefore don’t want to share it, or it could be that physicians do share it and families don’t want to hear it,” said Dr. Shannon Carson, a critical care specialist at the University of North Carolina School of Medicine, who has studied what families expect when a relative enters a long-term acute care hospital.

But the likeliest reason for the disconnect, he said, is that families are initially dealing with I.C.U. physicians who are focused simply on keeping the patient alive: “They are discussing how the patient is doing today, not how they will be doing in six months,” he said.
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The result is predictable, experts say.

“People are not prepared,” Dr. Nelson said. “There is one intervention after another. Ventilator, feeding tube, permanent feeding tube, permanent intravenous access. ‘Should we treat this infection?’”

The initial optimism soon vanishes after the patient arrives at the long-term acute care hospital. Some patients and their families eventually must confront an extraordinarily difficult question: When is it time to stop the interventions?

In one of their studies, Dr. Nelson and her colleagues telephoned people six months after they entered long-term acute care hospitals, intending to give them a brief set of questions to assess their mental functioning. But, they found, almost no one they called could respond to the telephone.
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Dr. Paul Scalise, left, of the Hospital for Special Care, with Joy Franklin, a patient, and staff members. “People don’t want to think about us,” he said. Credit Richard Gershon for The New York Times

Dr. Cox and his colleagues have found that about half of the patients who enter these facilities are dead within a year, and most of the rest are in custodial care. Just 10 percent to 15 percent return to an independent life.

At the Hospital for Special Care, 100 patients, including babies and children, are on ventilators. Seventy-five of them, Dr. Scalise said, “are on ventilators forever.” That’s why there are hookups in most of the hallways.

But while many of these patients may occupy a frightening middle ground between death and the lives they once knew, some do find happiness. The children, some abandoned by their parents, gurgle happily in the hands of volunteers careful not the disturb their respirator hoses. The couple who recently were married, Chris Plum, 38, and Margaret Lavigne, 43, share a room crowded with medical equipment, attended at all hours by determined aides. They kiss each other good night before being lifted into separate hospital beds.

“Everybody wants ‘the One,’ ” said Ms. Lavigne. “I did not expect to find him here, of all places.”

Other patients face tougher choices. The man with A.L.S. knows he will never eat again, that he will never walk again. He knows that the little muscle movement he has left will go. But it is not easy to pick a day and decide that is the day you will die.

Dr. Scalise visits the patient, who signs and mouths the words that he does not want to live like this any longer. But Dr. Scalise wants to be certain the man is sure. He asks a psychologist, a psychiatrist and another doctor to talk independently to the patient about what he wants to do.

Dr. Scalise, the nurse and the respiratory therapist are haunted by that first difficult conversation. “He does not want to live here, and he does not want to die,” Dr. Scalise said. “There is no training that deals with any of this.”

The man waits a week, speaking with the other doctors, thinking about how hard it would be to leave his family, including four children, two of whom were still in college. Then he asks the hospital staff to disconnect the ventilator.

On Wednesday, Feb. 27, at 8 p.m., the man’s nurses began giving him intravenous medications to deeply sedate him. The next morning, they turned off his ventilator. The man’s family was gathered at his bedside. Death followed in about 20 minutes.

“It was very hard to lose him,” his wife said. “I think it took a lot of courage.”

A version of this article appears in print on June 24, 2014, on page D1 of the New York edition with the headline: Where Recovery Is Rare.