Changing the conversation about palliative care
Like so many health topics that once were off-limits but are now commonplace, everyone suddenly seems to be discussing hospice and palliative care. Aging baby boomers—many journalists and bloggers—are experiencing serious illness or seeing their parents or friends become ill. Accustomed to being informed and discerning consumers of healthcare, they are now opening their eyes and ears to information about how hospice and palliative care might benefit them.
As an oncologist and palliative medicine specialist who has seen the enormous good this type of care can do, I’m heartened to see this topic is no longer taboo. But too often, the conversation misses the point and is framed as a debate: Either you fight your illness with all that modern medicine has to offer, or you take the palliative care and accept death with dignity. It’s time to change the conversation. Palliative care is about choosing the treatment you want when you’re seriously ill. That might mean fighting with all modern medicine can offer and seeking palliative care to relieve symptoms, improve quality of life and possibly extend life. Or it might mean stopping disease-focused treatments that are doing no good, and perhaps doing harm, and seeking hospice care to make the time you have as comfortable and meaningful as possible.
It’s about choosing how to live, not whether to live.
But as patients and doctors working together, we should make choices based on sound medical evidence. And that’s how the American Board of Internal Medicine Foundation’s Choosing Wisely program can help. The goal is to stimulate conversations between patients and doctors about common tests and treatments that may be harmful, unnecessary or wasteful. Choosing Wisely asks us to question what is happening, and choose only those tests and treatments that are helpful.
And that is where a new Choosing Wisely recommendation comes in, which states: “Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.”
In other words, don’t wait until the patient’s prognosis is poor, or until he or she has stopped being treated for the illness to provide this important focus on comfort. This goes along with the evidence. Palliative care works—it improves pain and symptom control, improves family satisfaction with care and reduces cost. And studies show that for some patients, palliative care helps them live longer.
For example, a study published in the New England Journal of Medicine in 2010 reported that patients with advanced lung cancer who received palliative care lived almost three months longer than patients who did not receive palliative care, even though the palliative group had less-aggressive cancer treatment.
Too often, physicians believe their patients aren’t ready. And patients either don’t know about palliative care, or they think it is hospice, or end-of-life care only, and resist it for that reason. Hospice is actually a specific type of palliative care for patients who are not expected to live more than six months. Doctors and patients are engaging in either/or thinking. But we are starting to see this change and we are especially encouraged that other organizations participating in Choosing Wisely also recommend not delaying palliative care, including cancer specialists, emergency room physicians and critical-care doctors.
All Choosing Wisely recommendations—and all medical choices in general—must be based on research-informed medical evidence. The evidence supporting the effectiveness of palliative care is mounting, but it lags behind many other specialties, in part because it requires asking people with very serious illnesses to participate in studies about palliative care.
However, we’ve learned that when we do ask them, many do want to participate and after completing one study, often volunteer again. They consider it a way to add meaning and purpose to their lives. Doctors and researchers can, and must, adjust the way we conduct these studies so that the burden is as light as it can be: go to patients’ homes instead of having them come to us; keep interview sessions short; and involve family members. These patients have so much to offer us—we owe it to them and to future patients to listen, to let them help educate us and to keep the conversation going.
Dr. Amy Abernethy is director of the Center for Learning Health Care at the Duke Clinical Research Institute, and immediate past president of the American Academy of Hospice and Palliative Medicine.