Part of the Living to the End of Life Special Report
(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)
In January, California became the first state to mandate home-based palliative care (care given to improve quality of life for patients with life-threatening diseases) to those in its Medicaid program. In California, that program is called Medi-Cal.
Although other Medicaid programs may pay for components of palliative care — such as advance care planning — “California is truly leading in this regard,” says Stacie Sinclair, senior policy manager for the Center to Advance Palliative Care, a national organization. Hawaii and Washington are also looking at adding home-based palliative care to their Medicaid benefits.
How the California Palliative Care Law Works
Most of the Medi-Cal population is enrolled in managed care plans which in turn contract with agencies to deliver home-based palliative care. Many of the patients face not only serious illness but a host of other challenges, including homelessness, food insecurity, mental illness or substance abuse. “Those problems probably dominate the care we provide, not just symptom control,” said Dr. Michael Fratkin, founder of ResolutionCare, a company serving people in rural northern California.
Many of ResolutionCare’s patients are unfamiliar with what palliative care means.
“I tell them there are three things to know,” says Fratkin. “We don’t take care of patients; we take care of people. We are person-centered. The second thing is we’re damn good at managing symptoms — pain, breathlessness, anxiety — for a high quality of life. And the third thing is: We help them and their families to navigate what can be terribly complicated medical circumstances and a terribly dysfunctional health care delivery system.” Roughly two-thirds (145) of ResolutionCare’s patients are on Medi-Cal and many are in their 50s and 60s.
The ResolutionCare palliative care team includes physicians, nurses, social workers, care coordinators, a spiritual counselor and community health workers. “We combine telehealth-based videoconferencing with knock-on-the-door, eat-the-cookies house calls,” says Fratkin.
Some patients require brief check-ins, while others need 20 to 30 hours of contact per week. “We drive our model by what’s needed for patients,” Fratkin says. This can mean anything from managing pain to delivering boxes of food, giving a caregiver a spa day or taking a patient to the beach. They even bought a plane ticket for a caregiver to come from out of state.
“They’re just fantastic people,” says George Johnson, 60, who lives by himself in Eureka, Calif. and has a number of serious medical conditions. ResolutionCare social worker Nikki Lang helped him find housing. The team makes monthly house calls and visited Johnson during a hospital stay. “They sit and listen. They’re really interested in my life,” says Johnson. “I wouldn’t mind working for them, if I was in better shape. You can’t beat them.”
Genesis of the Program
The Medi-Cal palliative care benefit was inspired by another California program, established in 2006, to provide pediatric palliative care through a waiver from the federal Centers for Medicare and Medicaid Services. “The waiver enabled seriously ill kids to get hospice and curative treatment simultaneously,” explains Judy Thomas, CEO of Coalition for Compassionate Care of California in Sacramento. “The state had a good experience and track record with pediatric palliative care, and research showed it was cost-effective.”
In 2014, a law passed mandating palliative care services be offered to Medi-Cal patients in their homes. The benefit is given only to people who have functional impairment from one or more of four conditions: congestive heart failure, chronic obstructive pulmonary disease, end-stage liver disease and stage three or four cancer.
It took until 2018 for the program to be implemented.
“We were ahead of the game by six months,” says Maria Aguglia, director of care management and utilization management for the nonprofit Health Plan of San Joaquin, a managed care Medi-Cal plan. “We knew this was a need in the community, and we knew it was the right thing to do.”
Aguglia, a nurse, had extensive experience with palliative care in hospital oncology. “Both my parents died of cancer,” she says. “They did not have palliative care, and they would have strongly benefited from it. I wholeheartedly believe in it.”
Health Plan of San Joaquin contracts with partner agencies to provide the services to some of the state’s most vulnerable people.
“For the patients, it’s a hierarchy,” says Aguglia. “Why should I be concerned about my symptoms when I’m worried about getting food on the table? Our partners go above and beyond to meet them where they are. They have met patients in the park who are homeless or in coffee shops because patients don’t feel comfortable having someone come into their home. They have met a patient in a storage container.”
Better Care at a Lower Cost
Palliative care experts hope California will begin a national move to provide home-based palliative care not only to Medicaid patients but to those on Medicare (for people 65 and older regardless of income) and private pay insurance.
Some Medicare managed care plans already offer the services. For example, Sharp Health Plan in San Diego, has a Medicare Advantage plan that has included home-based palliative care for a decade. Two peer-reviewed studies of the Sharp model found significant cost savings. In one, during the last six months of life, the net reduction in costs per participant per month ranged from $2,690 for dementia to $4,258 for cancer.
Expanding home-based palliative care to Medicare would mean a lot to ResolutionCare’s patients who turn 65 and aren’t on Medicaid, says Fratkin. As it is now, “They lose their [palliative care] benefit” when they go on Medicare. “Often we’ve been working with them for months, so we end up taking care of them without compensation. We’ve given away more than $1 million of uncompensated or undercompensated care. It’s a terrible business model.”
It’s too soon to know the net costs of Medi-Cal’s new benefit. But experts are optimistic that palliative care will be at least cost-neutral.
The most important thing though, says Fratkin, is not the savings. “What we care about is self-reported improvement in quality of life, in well-being, even the possibility of healing, and less drama and insecurity as people move to their death. Those are the kinds of things that get us up in the morning.”
Next Avenue Editors Also Recommend:
- One Doctor’s Plea: Consider Palliative Care
- Palliative Care Is Not Just for Hospice Patients
- The Ways Inequality Affects Black Americans at the End of Life
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