More Californians are participating in palliative care programs, but the need still outpaces the supply, according to a new report.
A mapping project just released by the California Healthcare Foundation found significant progress in the number of programs and participants participating in palliative care services compared to four years ago.
Palliative care is aimed at relieving suffering and providing the best possible quality of life for people facing the pain, symptoms, and stresses of serious illness. Unlike hospice care, which is typically provided only in the last few months of a patient’s life, palliative care is appropriate at any age and stage of an illness, and can be provided along with curative treatments, such as chemotherapy, said Jennifer Ballentine, executive director of the CSU Institute for Palliative Care, based at California State University San Marcos.
The foundation’s report in 2014 found “uneven distribution” of palliative care services in the state, and only about 25 to 50 percent of needs met. But the 2018 report found that inpatient palliative care capacity for the entire state ranges from 43 percent to 66 percent of need and community-based capacity ranges from 33 percent to 51 percent of need.
Data compiled after the report was written found that there is now at least some palliative care capability in every California county.
The most significant reason for the increase in palliative care services is the passage of Senate Bill 1004, a law that requires the California Department of Health Care Services to expand community-based palliative care services to Medi-Cal beneficiaries. Medi-Cal is the state’s low-income health plan; the program is known federally as Medicaid.
Under the new law, which became effective in January 2018, California became the first state in the nation to make palliative care part of the services provided under a Medicaid managed care plan.
Kathleen Kerr, an independent health care consultant who wrote the foundation’s report said the new law “played a big role in increasing availability in areas that previously had no specialty services.”
Palliative care programs have had to adapt their services to meet the specific needs of Medi-Cal patients and to show overseers that the services were effective and saved money, according to research by Kathleen Kerr and Anne Kinderman, director of the Supportive & Palliative Care Service at San Francisco General Hospital. For example, Kerr said, Medi-Cal palliative care patients may have trouble traveling to appointments, understanding the information and even being available for at home visits.
Resolution Care, for example, provides palliative care services in nine rural counties in California. While patients with private health insurance often got two in-home palliative care visits from a nurse each month, Medi-Cal patients were not necessarily at home to be visited on a regular basis, which made scheduling and contracting for payment difficult. Resolution Care began tracking the needs of each patient and was better able to meet needs and negotiate with payers for the specific services each patient got.
And once it found that many end-stage liver disease patients had many palliative care needs, including advance-care planning and a better understanding of what was available to them, directors of the palliative care program at LAC+USC Medical Center, a safety-net medical center in Los Angeles, applied for funding and hired a social worker.
The social worker led a group session once a week on what was available through the palliative care program, and used the rest of the time for phone and home based patient visits. The program was able to show improvement in patients’ symptoms as well as fewer days spent by patients in the program in the hospital, ICU and emergency room.
Kerr said California was able to show success in part because, unlike other states, it had already had many palliative care programs and managed care programs in place.
Health care providers have “increasingly recommended palliative care and payers increasingly payed for it,” she said.
Palliative care experts celebrate the improvement but are also mindful that there is much more to be done.
“While palliative care is growing in California, the movement is still in the very early stages,” said Judy Thomas, CEO of the Coalition for Compassionate Care of California, in Sacramento. “Challenges with finding staff, getting patient referrals, scaling up in size and measuring quality are common challenges among palliative care programs,” she said.
Other challenges include:
- Changes to the Affordable Care Act and state plans that cause people to lose health insurance, which could cause them to lose access to palliative care as well.
- There is not yet a standard definition of palliative care so there is wide variation in services across the state, in large part so that programs can have flexibility, according to Kerr.
- Some programs are still fragile in terms of funding and four or five have recently closed, according to Ballentine.
And even though palliative care can be especially helpful to underserved patients by connecting them with services such as housing, food and mental health counseling, palliative care can be a hard sell for this population, said Ballentine, because often these patients have been refused care in the past because they lacked insurance.
“So, when a health professional tells a patient that the best care at the moment is supportive, if for example chemotherapy for cancer is not indicated because the cancer is too advanced, that is often not well received,” she said.
Ballentine said a key problem with palliative care is that we “don’t do a good job of explaining it.”
She advises having palliative care conversations begin at diagnosis rather than the final stage of illness.
“When that happens,” said Ballentine, “what the patient can hear is ‘you’re giving up on me,’ when that isn’t the case. We have to start talking about palliative care at every check-up and new wrinkle in a condition, before we’re in the crisis.”