For cancer patients, this isn’t the end of life

The term “palliative care,” if known at all, often invokes associations with death.

“There’s a common misconception that palliative care means ‘I’m going to die,’ ” said Michele Longabaugh, a cancer survivor and registered nurse.

But national, state and local organizers are trying to change that misconception and offer palliative care to more people with a cancer diagnosis or serious illness.

The American Cancer Society Cancer Action Network is preparing to draft legislation for the upcoming Kansas Legislative session that would work to expand the use of palliative care around the state. It hosted a forum Thursday to discuss those efforts in Kansas. The organization is also asking Congress to expand palliative care nationwide.

But one of the largest hurdles facing those efforts is a misconception that palliative care is used at the end of someone’s life, according to the network.

Instead, the cancer network says, it aims to treat the emotional, mental and psychosocial aspects that come with diagnosis and treatment of a serious illness.

Jon Rosell, executive director of the Medical Society of Sedgwick County, described palliative care as appropriate “at any age and any stage of serious illness.”

The American Cancer Society estimates 14,530 Kansans will be diagnosed with cancer in 2016.

About 9 in 10 cancer patients receive treatment in outpatient settings, which often have less availability of palliative care compared to inpatient settings.

Less than half of Kansas hospitals offer palliative services compared to more than 70 percent of hospitals nationwide. And less than a quarter of small Kansas hospitals offer palliative care.

Insurance often doesn’t cover palliative care for patients.

A journey ‘that’s unknown’

A 2010 study published in the New England Journal of Medicine found patients who received palliative care had better quality of life, had less aggressive care at the end of life and lived longer than patients who did not have palliative care.

Deanna Speer, a palliative care specialist for Via Christi Hospitals-Wichita, said palliative care can begin at the time of diagnosis.

“They’re starting out on a journey that’s unknown,” she said.

Shaker Dakhil, an oncologist at Cancer Center of Kansas who attended Thursday’s meeting as an audience member, questioned some aspects of the cancer network’s goals for expanded palliative care, saying it would be difficult to train someone to know all the side effects of different kinds of cancer.

“Nobody knows the side effects of chemotherapy more than the oncologist,” he said.

Nonetheless, he agreed with the overall intent but would support abandoning the name palliative care, because it is often associated with hospice care, which is offered at the end of someone’s life.

“I wish they had called it supportive care, because that would be appropriate,” he said.

For example, Congress is considering a Palliative Care and Hospice Education and Training Act. The name of the act itself links palliative care with hospice.

The act aims to expand three areas of palliative care: research, medical and health professional training and public education.

The bill’s co-sponsors include U.S. Reps. Mike Pompeo, Kevin Yoder and Lynn Jenkins and Sens. Pat Roberts and Jerry Moran, all of Kansas.

Legislative bill

The American Cancer Society Cancer Action Network said it plans to draft a bill for the upcoming legislative session.

The bill would establish an advisory council of health-related experts to offer recommendations about palliative care in Kansas. The bill would also include educational programs about palliative care for consumers and health care professionals to combat misconceptions.

Kansas Senate President Susan Wagle spoke as a panelist at Thursday’s meeting. Wagle was diagnosed with Stage 4 non-Hodgkin lymphoma in 1995. Her son then had childhood leukemia and received a stem cell transplant, and this past year, her daughter received a transplant for multiple myeloma.

“I’ve been in a lot of treatment rooms,” she said. “There’s no question in my mind – the patients who have support services live longer.”

This story was originally published December 1, 2016 at 6:21 PM with the headline "For cancer patients, this isn’t the end of life."