When Kirsten Dearing stands up, her autonomic nervous system goes haywire, causing her blood pressure to plummet and her heart to race. It’s a condition that sometimes leaves the Santa Rosa resident unable to cope with everyday tasks, and she’s spent the last two years trying to sort through possible medications, weighing side effects against her debilitating symptoms.
The 36-year-old is a prime candidate for palliative care, a form of medical treatment that helps people with serious illnesses cope with their symptoms, improve their quality of life and, in some cases, prolong their lives by decades.
The supportive care — which involves a team of doctors, nurses, social workers and, sometimes, a chaplain or therapist — is coming next year for many low-income patients in California. But hundreds, if not thousands, more, including Dearing, will not qualify under the state’s plans, released in September.
The Department of Health Care Services, which oversees the state’s low-income health plan known as Medi-Cal, is proposing to offer palliative care to patients with any of four conditions: late-stage cancer, congestive heart failure, chronic obstructive pulmonary disease and liver disease.
Under the proposal, the agency estimates that 7,400 people will eventually be covered.
Others, who in many cases have equally serious conditions, will be left out. Dearing has been diagnosed with Postural Orthostatic Tachycardia Syndrome, a condition that causes her body to frequently switch into fight or flight mode without reason. Because the symptoms are triggered when she stands up, she can no longer take showers or go grocery shopping. “Sometimes I can’t even make it upstairs to my own bed and I have to sleep on the couch,” she said.
“There’s probably a lot of people out there like me that are pushing themselves to try to make it on their own, and they shouldn’t have to,” Dearing said.
‘The country is watching’
A 2014 state law, Senate Bill 1004, requires the state to create a palliative care program for people enrolled in Medi-Cal. A third of the state is enrolled in Medi-Cal — that’s 13.5 million people.
The law does not specify how expansive the palliative care program should be.
It’s unclear how many people with Medi-Cal have serious illnesses and could benefit from palliative care, but a 2014 study found that, statewide, nearly 184,000 people could have benefited from palliative care in the last year of their life. Existing community-based programs could meet only 29 percent of that need, according the research by the California Health Care Foundation.
The number of people who could benefit from palliative care earlier in their lives, from the point of their diagnosis onward, is even greater. Palliative care can go hand-in-hand with curative treatment and is different than hospice or end-of-life care.
Advocates had hoped that the new law would open the gates to palliative care for all Californians, with private insurers following the state’s lead, but that has so far not been the case. Palliative care is not widely available in the state: insurance typically doesn’t cover it and, perhaps as a result, there are a limited number of doctors and nurses who offer it.
Palliative care experts said they know of no private health insurance plan in California that covers the care.
“What I’m hoping is that this (Medi-Cal palliative care program) will provide a template that private health plans can look at and they will cover this too,” said Helen McNeal, executive director of the CSU Institute for Palliative Care. “I know that the rest of the country is watching California and SB 1004.”
The state Health Care department initially proposed an even narrower palliative care program — for only patients with late-stage or high-grade cancer. But after advocates complained, the agency opted to broaden the guidelines and include three other conditions.
“Based on the significant body of national research on palliative care, and the results of existing palliative care programs, these four conditions are most promising for improved patient satisfaction and health outcomes, and permit cost-effective implementation,” said DHCS spokeswoman Carol Sloan.
The department’s plan still isn’t inclusive of all cancer patients — it proposes covering patients with stage 3 or 4 cancer, a diagnosis that is typically serious and means that the malignant cells may have spread to other parts of the body. Health plans can elect to broaden their palliative coverage for cancer patients or those with any other conditions, Sloan said.
Palliative care advocates said they understand the state wanting to start with a narrow focus, but hope it will increase over the coming years.
“I think it does have to be done over time, partly because there’s not enough capacity in the health care system right now to provide palliative care to all people,” said Judy Thomas, CEO of the Coalition for Compassionate Care of California, an advocacy group that has worked with the state on the SB 1004 guidelines. “I’m acknowledging that it’s just a step and hope we’re leaving the door open for advocacy in the future.”
The guidelines released in September are for Medi-Cal managed care plans, which cover the bulk of patients. Early next year, the agency intends to release plans for palliative care for the other Medi-Cal coverage program called fee-for-service.
The state has yet to announce exactly when it will begin covering palliative care, but Sloan said that advocates expect the program to roll out this spring.
Questions on oversight
The managed care program is supposed to be cost-neutral, and it’s up to the health care plans that contract with the state to make sure that happens.
Under the policy released in September, managed care plans would be required to notify their enrollees that the benefit exists. One concern advocates have is that the notices may be overlooked in the sea of insurance paperwork that Medi-Cal members receive, and people who qualify won’t know the care exists.
It’s unclear how the Health Care department will monitor whether the health plans are complying with the new requirements. The agency is still developing its monitoring process, Sloan said.
If the Medi-Cal palliative care program can improve patient satisfaction and reduce overall health care costs, advocates hope it will be expanded. Private insurers may also take note and begin to cover the care.
Some Medi-Cal health plans have already started offering palliative care on a limited basis. Partnership Health Plan in Northern California started a palliative care pilot program and has seen positive results. The data show that the program has reduced ER visits and improved quality of life for the patients involved, said Kate O’Malley, senior program officer at the Health Care Foundation.
It’s a support structure that Dearing of Santa Rosa, who is a Medi-Cal patient, wishes she had access to.
A palliative care team could help her find transportation to doctors’ appointments, manage her medication list and figure out how to accomplish daily tasks.
“That’s great for the people who are going to get it, and my positive hopes are out there for all the rest of us who could really use the assistance,” she said.
To comment on the palliative care proposal, email the state Health Care department at SB1004@dhcs.ca.gov.