Palliative care is often associated with hospice — or end of life — but the advocacy arm of the American Cancer Society wants to change the conversation to make it clear that palliative services can help patients manage life better at any stage after a serious diagnosis.
“Say you were dealing with side effects of your treatment, and that was leading to feelings of sadness and depression, the palliative care team may recognize that, and put you in touch with a psychologist or someone you can speak with to deal with those effects in a proactive way,” said Valerie Pracilio, a Philadelphia volunteer with the American Cancer Society Cancer Action Network.
The network gathered lawmakers at the VA Medical Center in Philadelphia to rally support for a series of federal bills aimed to expand access to palliative care and increase the number of professionals providing that care.
Pracilio said palliative care often helps patients manage stress or tamp down pain so they can better “be there for their families.” Typically, there’s a social worker or a psychologist on the team, and part of the job is helping family members too.
Liver-cancer specialist David Kaplan, director of hepatology at the Philadelphia VA Medical Center, said the vast majority of the liver-cancer patients are diagnosed when they have late stage cancer — and many of them have underlying cirrhosis. The five-year survival rate for that group is about 12 percent.
“Of the patients I see on a weekly basis, probably 30 or 40 percent could benefit from palliative care or hospice services,” he said. “But fewer than 10 percent of them are involved in that until the very end.”
Kaplan almost always has to explain palliative care: “We try to explain that it’s an active treatment but one that is symptom directed.” The idea is to reduce suffering, he said.
Soon after a diagnosis, palliative chemotherapy can control the growth of a cancer tumor — and may reduce distressing symptoms — but is not an attempt to cure the patient.
The VA system does not have the rule, but Kaplan said in some states, patients who’ve decided to enter hospice are not permitted to also have palliative chemotherapy because it is considered an active treatment.
“From a policy perspective, that’s something that can be legislatively addressed,” he said.
In more advanced cases, palliative care is provided under the umbrella of hospice — including pain relief, emotional support, grief counseling for spouses, or respite for overwhelmed caregivers.
Patients often refuse hospice care until the last days of life, Kaplan said, because they perceive that choice as giving up. “Veterans in particular look at it as surrendering,” he said.
“Once one mentions the ‘H’ word -– hospice — in many patients, it creates a wall between the patient and the provider,” Kaplan said. “There is a very strong negative cultural bias against palliative care and hospice.”
The forum for lawmakers and community members was an attempt to change the conversation.
Kaplan said, in his experience, families and patients are very satisfied with hospice and palliative care.
“They almost universally say I wish we had chosen to do this months ago,” he added.