The number of palliative care teams in hospitals around the country has nearly tripled in the past decade. In Pennsylvania, in the past three years alone, the percentage of medium and large hospitals with teams has risen from 54 to 67 percent.
Still, advocates and some lawmakers say pain management and emotional support for those with serious or terminal illnesses and their caregivers are still not accessible enough.
‘A battle to fight’
When Katie Lawson’s son Liam was diagnosed with a terminal neurological disorder at 4 months old, she knew comfort care would be their first priority. But her son’s specialists were resistant.
“We just hit a barrier everywhere we went with that,” Lawson said.
When it was clear Liam was going to die, she wanted to refuse a feeding tube, but the Chester Springs, Pa., mother said she could not find medical staff to help her fight for her choice.
“They were only interested in prolonging his life, which would in turn increase his suffering,” Lawson said. “So we had a big battle to fight looking for palliative care.”
After nearly two years looking for emotional support and help with medical care, Lawson found hospice care soon before her son died. That was eight years ago.
Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai Medical Center in New York City, said though palliative care teams are much more widespread, that does not mean every patient who could benefit from the care gets it.
“Many of today’s physicians and nurses trained in an era when there was no such thing as palliative care,” Meier said. “They don’t know what it is, and they tend not to refer. And this is why it is so critically important for the public to know what palliative care is and to demand it from their physicians.”
This week, Lawson testified before a legislative committee in favor of a bill requiring doctors to receive continuing education training in palliative care.
Pennsylvania State Rep. Dan Frankel said he plans to reintroduce the bill this legislative session.