If you’ve never heard of palliative care, you’re not alone. In a recent survey, only 24 percent of people said they were familiar with the term. Palliative care isn’t nearly as well known as, say, hospice care; in fact, people often confuse the two. Its use is growing fast, however, and 59 percent of hospitals with more than 50 beds now have palliative care programs. Hospitals like this type of care because it appears to be cost-effective and may improve health outcomes. Patients — once they know about it — like it because it may make them feel better.
The goal of palliative care is simple: Improve the quality of life for people who are dealing with serious chronic or life-threatening medical problems. People with diseases such as cancer, congestive heart failure, HIV/AIDS and kidney failure often have tremendous problems with pain, shortness of breath, fatigue and nausea, among other symptoms. Especially in a busy hospital, it’s challenging to keep these patients comfortable and pain-free and to help them deal with the difficult medical and personal decisions they may face. That’s where palliative care comes in.
Specially trained palliative care teams, which typically include a doctor, a nurse, a social worker and a spiritual counselor, focus on relieving pain and managing symptoms. They coordinate a patient’s care among different providers, if necessary, and help patients and their families determine care goals and make treatment decisions. If a patient is nearing death, the palliative care team can offer emotional and spiritual support.
Palliative care — from the Latin “palliare,” which means “to cloak” — grew out of the hospice movement that began in the 1970s.
“We showed that you don’t have to die in pain,” recalls Michael Levy, director of the pain and palliative care program at Fox Chase Cancer Center in Philadelphia. “You can have more comfort and function, and attend to the anticipatory grief work that helps the patient and the family.”
As hospice care became more established, policymakers and clinicians realized that seriously ill patients, even when not facing death, could benefit from better pain and symptom management and other palliative care services. Today, hospice care is at one end of the spectrum of palliative care. But while hospice is generally offered to people who are expected to live six months or less, palliative care can be provided in conjunction with curative treatments. Many patients who receive it aren’t expected to die anytime soon.
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After Andre Chervin began a series of radiation sessions in 2008 to treat a cancerous mass in his throat, he caught a virus that caused severe diarrhea and was admitted to Mount Sinai Medical Center in New York for a week. While he was there, he was in extreme discomfort because the radiation treatments had dried up his saliva, making his mouth and throat so dry that he couldn’t swallow.
“It was horrible,” says Chervin, now 83. “You cannot eat, you can only drink.” The palliative care team visited him and set him up with a spray bottle that contained artificial saliva that he could spray into his throat. The liquid didn’t taste pleasant, but at least it allowed him to swallow.
Patients are sometimes confused and alarmed when the palliative care team comes to their room, says Donna Nolde, palliative care program manager for Chandler Regional Medical Center and Mercy Gilbert Medical Center, both near Phoenix. When members of the team introduce themselves, they immediately clarify that they’re not hospice workers. “You have to do it quickly or you lose them,” she says. “They think, ‘There’s something wrong with me!’ “
Although palliative care is still a relatively new field, research is beginning to show benefits. A study published last year in the New England Journal of Medicine found that lung cancer patients who received palliative care had better quality of life, were less depressed and lived longer than those receiving standard care.
Palliative care is cost-effective as well. A study in the March edition of Health Affairs found that Medicaid patients at four New York state hospitals who received palliative care on average incurred nearly $7,000 less in hospital costs per admission than Medicaid patients who didn’t receive palliative care. This study supports the results of a 2008 Archives of Internal Medicine study of non-Medicaid patients at eight hospitals that showed average savings of about $1,700 for those who survived a hospital stay and $4,900 for those who did not.
Palliative care is still an emerging field: Despite its apparent cost-effectiveness, insurers typically don’t yet reimburse hospitals for palliative services beyond doctor visits and care related to hospice. “Unless you have a health-care system or a large hospital funding the rest of the team, you really can’t provide [palliative] care,” says Michael Nisco, medical director of hospice and palliative care services at Saint Agnes Medical Center in Fresno, Calif.
When Martin Arnold’s 94-year-old mother was admitted to Saint Agnes last month, a blood clot in her leg had caused a systemic infection; and her condition was dire. When she arrived, Arnold says, she was in tremendous pain, moaning and fidgeting. A member of the palliative care team visited her and gave her a morphine drip to ease the pain in her leg that helped her go to sleep. Later she died. “It was a total relief to the family to get her someplace where they were able to give her what she needed to keep her peaceful,” he says.
Most people with serious illnesses aren’t in the hospital, of course, and the future of palliative care lies outside acute-care facilities, says Diane E. Meier, Mount Sinai’s palliative care program director and the director of the Center to Advance Palliative Care, a group that helps hospitals and others develop palliative care programs. In the next decade, she expects to see palliative care emerge in individual physician offices, clinics and other community settings.
“That’s where most of the patients are,” she says, “and that’s where the need is.”