Diseases are lousy and serious diseases are lousiest of all, so it’s no wonder that most health-oriented philanthropy focuses on the research or delivery of cures and treatments.
But millions of people live a long time with serious or incurable diseases, sometimes many years. And for these folks, the path to the best possible life could include often-overlooked palliative care services. Such measures don’t focus on cures or treatments, but on improving the patient’s quality of life by managing pain and other symptoms. They’re for anyone with a serious illness, whether it’s life-threatening, chronic or even curable. And while our quickly aging population means we’ll have more people every day with serious conditions, palliative care is not just for the elderly.
Palliative care focuses on the patient’s quality of life by managing pain and other distressing symptoms of a serious illness. Its benefits include less pain and discomfort, fewer hospital and emergency room visits, better quality of life, and a prolonged life.
Note especially that last point: Choosing palliative care doesn’t mean you’re giving up the fight and coasting along on painkillers. It’s a common misconception that patients must choose between aggressive treatment or palliative care. For many patients, such as those with cancer, the two types of care can and should be delivered concurrently, said Amy Berman, senior program officer for the John A. Hartford Foundation.
What’s Important to the Patient
“Palliative care is really about the person, not just their pain or symptoms, but their needs and goals for their lives, including the needs of the family,” said Berman. “It’s about what’s important for that person, to help them live how they want, and have the outcomes in life they’re trying to have.”
Palliative care teams include doctors, nurses and nurse practitioners, but also social workers, pharmacy professionals and chaplains. Ideally, teams meet and coordinate to go over plans and challenges for their patients. Many hospitals provide palliative care, but the topic is still below the radar for many patients who could benefit from these services and support.
JAHF, one of the few national funders that’s focused on older people, has been supporting palliative care organizations for more than a decade. In partnership with Cambia Health Foundation, the funder recently announced a three-year, $4.25 million awareness initiative. The grant, to the Cambia Palliative Care Center at the University of Washington, will support efforts to help healthcare professionals and patients understand and deal with care for people with serious illness more successfully.
Anthony Back, MD, a medical oncologist and co-director of the Cambia Palliative Care Center, says that palliative care is still poorly understood by doctors as well as patients. “As a medical oncologist, I’ve seen patients end up in a vicious cycle of going from treatment to treatment,” he said. “They’re not thinking of the quality of their life, but of getting to the next treatment.”
If you ask what patients care most about in terms of their treatment, pain is one of the top concerns, said Back. But less than 1 percent of NIH-funded research addresses palliative concerns such as pain; what little funding there is mostly comes from philanthropy.
“The vast majority of research dollars are for treatments that produce incremental improvements, or are ‘me-too’ drugs for pharmaceutical companies," said Back. "New treatments get all the money and all the press, but everything involved in the care you need to stay home and feel better affects many more people.”
Putting Caring Over Curing
Philanthropy’s focus on palliative care raises issues beyond addressing an important medical need or broadening access to this type of care. It’s also about our country’s medical culture and attitude toward end-of-life care, as well as care for many types of serious and chronic illness. “A lot of my research is about how you re-educate doctors to learn skills to talk to families and patients about this in ways they never learned in medical school," said Back. Other innovations must involve health coverage and payment models to bring palliative care into the mainstream.
Doctors are trained to do everything they can, and they feel pressure to treat aggressively. “But people with serious illness can find themselves on an endless treadmill of tests and procedures,” said Back. “They may spend the last year of their lives going back and forth to the ER, and it doesn’t have to be that way.” Medical procedures during serious illness can be painful and may involve hospital stays that are unpleasant and disruptive for the patient and their family.
JAHF’s Berman puts it succinctly: “Palliative care is all about helping people live well in the face of serious illness.” She knows whereof she speaks: Berman has stage 4 cancer, but in the nine years since she was diagnosed, she has been hospitalized exactly zero times. She continues her career, travels and remains active. “I have a great life, but if I didn’t have access to this kind of care, I wouldn’t have been having such a great life.”
An example of palliative care in action in Berman’s life occurred about five years ago, when she developed pain in her back. The cancer had spread to a new site. A course of radiation therapy was known to eliminate that kind of pain; fortunately, Berman’s palliative care specialist knew of a study showing that a single large dose of radiation, rather than the typical course of several smaller doses, had good results with fewer side effects.
Berman had the single radiation treatment, lost the back pain, and experienced no side effects, which she attributes to the advice of the palliative care specialist. “That’s what they’ve done—they’ve helped me sidestep a lot of problems.”