Prime Time - Jane Fonda [120]
I assumed palliative care was the same as hospice care, the value of which I had witnessed when a beloved aunt was dying. The hospice worker enabled my aunt to actually look forward to the experience. My aunt called me the night she died to say goodbye and tell me she’d put on her favorite lipstick and nightgown and “was ready to die.” But when I interviewed Dr. Diane Meier, who heads the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York, she made clear that hospice and palliative care are different.
“Hospice is one version of palliative care specifically for the terminally ill,” Dr. Meier explained. “And, in fact, to get hospice in this country, your doctor has to sign a piece of paper saying you are dying within six months, and you—the patient—also have to sign a piece of paper saying you are willing to give up life-prolonging treatment in return for hospice care. It’s not human nature to accept the reality of death, nor to give up the hope that more treatment will prolong your life. As a result, the majority of people don’t start getting hospice until the last few weeks of their lives, and more than 60 to 70 percent of Americans who die never get hospice at all because of those barriers, those eligibility barriers. Late referral means that people and their families miss out on the care and support they desperately need during the typically many-year duration of a serious illness. This is why palliative care outside of hospice is not limited to the dying.”
Palliative care, Dr. Meier went on, is “for anyone living with a serious illness who may have years to live but have consequences of their illness: distress due to psychological, physical, practical, or spiritual issues, as well as family burdens.” As with hospice care, palliative care can be provided at home, in a nursing home, or in a hospital. I learned from Dr. Meier that palliative care teams look at the patient’s entire situation, including their ability to access transportation, manage their pain, understand what is happening to them, and arrange for massage therapy; workers will also help members of the family handle their own stress. “Thanks to modern medicine, we can keep you going for a very long time with some pretty debilitating illnesses,” continued Dr. Meier. “So palliative care developed as a field in an attempt to focus on the quality of all this extra time. It gives the patient this sense that no matter what happens, you’re going to walk with them and be with them and listen to what matters to them—the patient is at the center. This kind of support and attention is profoundly reassuring and, unfortunately, in the absence of palliative care, is not something that characterizes modern medical care in this country. Most people with advanced illness have six specialists and no quarterback, no one really in charge. And even if they once had a quarterback, a primary care physician, once the serious illness develops, that person often recedes into the background, is out of the loop, is no longer controlling the care, and the patient is sort of left to the hospitalist, the oncologist, the cardiologist, or the neurologist, who does not see him- or herself as a primary care physician or as the person who is going to keep walking with that patient and family no matter what happens. They’re the specialist. They treat the heart failure, they treat the cancer, they treat the Parkinson’s disease, but the needs of the patient go far beyond the disease-specific