Palliative care prolongs life, reduces suffering
By Liz Szabo,, USA TODAY
Updated Feb 22, 2011 8:50 PM By Judy S. Reich for USA TODAY
Dr. Gail Austin Cooney visits hospice patient Beverly Vivona.
There are no secret passwords in medicine, no mysterious handshakes or signals to use when seeking the best care for a serious illness.
But experts say two words come close: palliative care.
Many people have never heard of palliative care, a comprehensive service that aims to relieve suffering in people with serious illnesses, such as cancer, lung disease or kidney failure.
Some patients — and even many doctors — confuse palliative medicine with hospice, a form of palliative care for people in the last six months of life. Other patients mistakenly worry that doctors won’t work as hard to cure them if they ask for palliative care, says Gail Cooney, former president of the American Academy of Hospice and Palliative Medicine.
Those notions could change in light of recent research.
A study of 151 patients published last summer in The New England Journal of Medicine showed that getting early palliative care — in addition to regular medical treatment — helpedpeople with lung cancer live three months longer, compared with those given standard care.
In comparison, chemo can give newly diagnosed lung cancer patients an extra two to three months of life, says study co-author Thomas Lynch, director of the Yale Cancer Center.
“If this was a drug, this would be on the front page of every paper in the country, talking about ‘New advance in lung cancer,’ ” Lynch says.
But palliative care patients didn’t just live longer. They also lived better, with less depression and a higher quality of life, he says.
Tailored to the patient
It’s never too early to ask about the service, doctors say.
People can begin palliative care as soon as they’re diagnosed with a serious illness, even if they still hope to be cured, says Thomas Smith, medical director of palliative care at Virginia Commonwealth University’s Massey Cancer Center in Richmond.
Teams that provide palliative care focus on talking to patients, trying to understand people’s values and tailor care to the patients’ goals, Cooney says.
These teams — which often include psychologists, social workers, pharmacists, nutritionists and chaplains — also coordinate treatment, which can be especially important if people are being seen at more than one center, says Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
The teams also support caregivers, who have a critical role in patients’ health.
Palliative care benefits
Patients whose doctors focused on relieving suffering, rather than extending life, actually lived longer and felt better, one study of 151 people finds:
Palliative care patients: 11.6 months
Standard care patients: 8.9 months
Palliative care patients: 16%
Standard care patients: 38%
Source: The New England Journal of Medicine
‘People need to ask for it’
Because of her work, Cooney knew to ask for palliative care when she was diagnosed with advanced ovarian cancer nearly three years ago.
“I wanted it all,” says Cooney, 58, who’s also the assistant medical director of Hospice of Palm Beach County in Florida. “I received very aggressive chemo. But I used a program of palliative care to control my symptoms and allow me to tolerate the chemo.”
In addition to undergoing surgery and chemo at a hospital, Cooney sought palliative care through an outpatient center, the Sari Asher Center for Integrative Cancer Care in Palm Beach.
Though about 80% of large hospitals offer some kind of palliative care, there are fewer ways for patients to get support outside the hospital, where cancer patients today receive much of their care, Cooney says.
She used both acupuncture and conventional drugs to avoid nausea and felt well enough to indulge in milkshakes to keep up her strength and weight.
Palliative care helped with many aspects of cancer therapy, which put her in remission for two years, Cooney says.
She joined an ovarian cancer support group, received one-on-one counseling with an oncology social worker and met with a nurse educator to better understand the many drugs she was taking.
After her cancer began growing again last fall, Cooney resumed intravenous chemo and hopes for a good response.
Cooney says she wishes that more patients and their caregivers knew to ask for palliative care. “People think, ‘My doctor will ask if I need it,’ ” Cooney says. “But people need to ask for it. It can be tough to challenge a doctor. But if people begin asking and advocate for themselves, generally doctors will say OK.”
Palliative care also could help cut spiraling medical costs, Smith says. Studies show it can save hundreds of dollars a day, keeping patients out of the hospital or expensive intensive-care units.
Kaiser Permanante, an integrated system in which the same company operates hospitals and insurance plans, found that people cared for by a palliative team live just as long as or longer than others and had fewer symptoms.
Their caregivers also experience a lighter burden because the programs address their needs as well, Smith says.
“No death panels here — exactly the opposite,” he says.
In spite of these benefits, palliative programs struggle to reach everyone who might need them, Smith says. That’s because few health systems are as coordinated as Kaiser, he says.
The bottom line
In most cases, the cost savings from palliative care are spread throughout the system — saving money for Medicare, for example — instead of returning money to individual hospitals or programs, Smith says. So in the short term, individual hospitals may lose money, even if the country overall saves money.
“It would be terrific to have more family support, more chaplain support,” he says. “Most programs don’t have any way to pay for that.”
The Massey Cancer Center pays for a psychologist partly by reducing physician salaries, Smith says. His team also does fundraising to pay for a chaplain, who he says “is critical to help people come to terms with their illness and often the end of life.”
Without enough resources for everyone, palliative care programs often give first priority to people with advanced or fast-moving cancers, such as pancreatic tumors, Byock says.
“Even the most robust palliative care programs have limited resources,” he says. “If someone has a serious diagnosis and they have only the ‘ordinary’ level of stress, we’d likely not see them.”
But patients shouldn’t give up.
“It really does take one-on-one advocacy,” Byock says. “You have to be savvy enough to ask for it. Just say, ‘We want the best care for our loved one.’ ”
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