Palliative care, increasingly common within hospitals and some outpatient centers, is often confused with hospice care. But unlike hospice care, palliative care -- usually in teams consisting of physicians, nurses, and social workers, and sometimes including nutritionists and chaplains -- offers support, counseling and help with pain and side-effect control even as patients are getting active medical treatment.
Frank discussions with such a team make it more likely that patients die with their wishes respected, and less likely that medical care will kick into default mode: moving from one therapy to the next with little evidence any of it will help.
Conversations about ending treatment lead to talks about hospice care and death. None of it is easy for patients or doctors, says Dr. Erik Fromme, palliative care physician at Oregon Health Sciences University Medical Center in Portland, Ore. "It may sound sappy, but it's my experience that when love is present—love going to and from the patient—things turn out OK," he says. "Hospitals can support that—or interfere with it."
Cancer's progression, many patients say, feels like a roller coaster ride between hope and despair. "Hope changes over time," says Fromme. A major role of a palliative care team is to listen as patients change the discussion from hope for a longer life to hope for a good quality of the life that remains.
Both palliative and hospice care, studies show, not only result in improvements in quality of life, but have actually been shown to extend life. A study in the New England Journal of Medicine looked at 150 patients with lung cancer. Half of them received palliative care in addition to medical treatment soon after they were diagnosed. The other half received standard medical care without palliative care consultations. Those receiving palliative care reported a better quality of life and less depression; they had fewer aggressive treatments at the end of their lives, and they lived an average of two months longer than those who did not receive palliative care.
Even the best physicians can be squeamish about how to tell cancer patients that medical treatment isn't working. They fear they're robbing patients of hope. "That's a bogus argument," says Dr. Thomas Smith, director of palliative medicine at Johns Hopkins Medical Center. A 2011 study in the Journal of Supportive Oncology found the that truth didn't destroy hope. Researchers gave cold, hard information to 27 patients with late stage cancer, including the fact that their chances of cure were zero. Using a standardized measure called the Herth Hope Index, they found that patients held onto previous levels of hope, even when the news was bad. "It's not like people aren't thinking about these things anyway," says Smith, lead author of the study on hope. "Sometimes when we told people they had four months left to live, they'd say, 'That's longer than I thought.'"
With cancer, it seems there are always promising treatments just over the horizon. Plumb makes it a point to keep abreast of new developments in CLL, not knowing if any new treatment will be available in time to help her. She continues to hope, and to plan realistically, weighing the risks and benefits of continued aggressive treatment. "I know that I need something to come along that's better than the treatment I'm on now," she says. If that doesn't happen soon, she says she is likely to discontinue medical treatment and choose a more peaceful path.
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