For Gail Cooney, 59, palliative care means yoga, acupuncture and counseling to help her through aggressive chemotherapy for her ovarian cancer. For 93-year-old Jack Hilder, it means home visits that help him keep living independently in a Chicago suburb despite a stroke that has limited his mobility.
Illustration by: Alex Nabaum
Palliative care can help ease the burdens of complex illnesses like cancer, heart disease and diabetes, but confusion and fear keep many from getting this service. Like hospice care, with which it is often confused, palliative care focuses on helping patients with their pain and symptoms, and offering counseling and other services.
But if hospice care is about a good death, palliative care is about making the most of life with a serious illness, whether the disease is terminal or not.
"Doctors think that you only call palliative care when your patient is about to die," says Diane Meier, director of the Center to Advance Palliative Care in New York. "Patients don't know what it is and don't demand it. They don't realize they have a right to care focused on improving function and quality of life."
Cooney, of West Palm Beach, Fla., recently finished six months of chemotherapy. "I'm still working, and I give a lot of credit for that to a strong palliative care program," she says.
Palliative care takes a team approach, providing a doctor, nurse, social worker and chaplain working together to go beyond strictly medical issues to address all of a patient's needs. That could include managing pain and nausea associated with a disease as well as counseling or help in navigating the health care system. About 58 percent of U.S. hospitals provide palliative care, according to the Center to Advance Palliative Care, a number that has more than doubled since 2000.
Palliative care is a relatively new specialty, but studies already have found it makes a difference. For example, lung cancer patients who received early palliative care, along with standard treatment, on average lived almost three months longer than those who didn't, according to a 2010 study in the New England Journal of Medicine. This may be because people whose pain and symptoms are well managed can tolerate more aggressive or longer treatment, experts say. The patients in the study also experienced less depression and better quality of life.
Other research has shown that palliative care reduces spending on expensive hospital care that doesn't prolong or improve patients' lives. Although Medicare has no specific palliative care benefit, many treatments and medications for palliative care are covered through standard benefits. With private insurance, coverage depends on the company and the policy and what specific services you need.
Sometimes doctors and patients confuse palliative care with hospice care, which is for people who no longer need or want to treat their condition but want help managing their pain. Palliative care, on the other hand, is often meant to help people who are still fighting their disease. But some fear palliative care because they think it means giving up. As a result, many patients don't seek this care early in the course of their illness, when it could do the most good.
Also, many patients and doctors have an all-too-human tendency to avoid talking frankly about the seriousness of a diagnosis, which may prevent the subject of palliative care from even being discussed.
"A lot of physicians aren't comfortable talking about what do we do if the chemo doesn't work," says Andrew Putnam, M.D., director of palliative care at Georgetown Lombardi Comprehensive Cancer Center in Washington. That's a missed opportunity, he says, because palliative care teams are trained to help patients understand all their treatment options as well as the quality-of-life ramifications, so they can make truly informed decisions about what's best for them.
Often patients assume their doctors will take care of their pain and don't realize that in our specialized medical system, the oncologist or the cardiologist has not been well trained in pain and symptom management, Meier says. Nor do specialists have a lot of time to spend on quality-of-life issues. Because they are focused on treating the illness, doctors may not realize how bad a patient's symptoms are or that they are overlooking better options for reducing pain.
"The system is broken for the sickest and most vulnerable patients," Meier says. "The minute you get a serious illness, you get referred to a specialist. The specialist is focused on his or her organ or his or her disease. They're not focused on the whole person."
What you can do
There are steps people can take to ensure they get the best care possible.
Have a frank discussion with your doctor about your diagnosis, your prognosis and your goals for treatment. Ask for a referral to palliative care. If your doctor doesn't cooperate, ask for a second opinion or consider finding a new doctor, advises Thomas Smith, M.D., a palliative care researcher at Massey Cancer Center of Virginia Commonwealth University and director of the palliative care program there.
"It requires gumption on the part of the patient and their family, but it's absolutely necessary for good care of the seriously ill patient," says Smith. "Patients should not be afraid to ask for a palliative care consultation. It doesn't mean they'll die sooner. In fact, they might live better and longer."
Karen Rafinski is a freelance medical and science writer based in Boston.
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