Palliative care in California: Improving, but not everywhere

California’s system for handling serious and end-of-life care is improving, but more services are needed to meet patient demand, according to two major reports released on Thursday.

A growing number of the state’s hospitals — especially in the Bay Area — are offering palliative care to comfort patients living with serious illnesses such as cancer, heart disease and dementia, protecting them from futile, often painful medical treatments, the reports say.

Seventy-four percent of hospitals in the state offer some type of palliative care program, compared to a national average of 66 percent. In 2008, only 56 percent of California hospitals had such programs, according to one of the reports, “America’s Care of Serious Illness,” by two national palliative care organizations.

But a closer look shows great geographic variability, with most care centered at large and nonprofit facilities in urban parts of the state, says the second report, “Dying in California: A Status Report on End-of-Life Care.”

“Overall, California has made significant strides,” concludes that report, by the California HealthCare Foundation and Coalition for Compassionate Care. “However, significant challenges remain. The growing demand for palliative care far outpaces the capacity of services.”

Specifically, the state needs more specialists and certification programs, as well as reliable funding and better standardization of care, the report says.

Palliative care is not hospice, which also focuses on emotional support and relieving symptoms for people in the final six months of a terminal illness. Palliative patients may have several years left to live.

And it does not require giving up the chase for a cure, as hospice does. But it doesn’t enlist the aggressive care of Intensive Care Units, where each crisis can cost tens of thousands of dollars.

An estimated 14 million Californians suffer from chronic illness; of these, seven million struggle with several chronic disease.

“Palliative care means we are treating the entire person, not just the biological manifestation of disease,” said Dr. Ruma Kumar, medical director of Supportive Care Services at Kaiser Northern California.

Every Kaiser medical center in the Bay Area offers inpatient and outpatient palliative care, and it is beginning to bring the care to patients’ homes, she said.

“It strives to relieve physical, psychosocial and spiritual distress … maintaining the best quality of life for them as possible,” she said. “This is the kind of care I would want for my family and myself.”

While large urban facilities — such as Kaiser, Stanford, UC San Francisco and Sutter Health — offer major programs, smaller and for-profit hospitals, as well as rural hospitals, are less likely to offer palliative care programs.

The need to expand palliative care was the subject of the Bay Area News Group’s 2014 award-winning series, “The Cost of Dying.”

Both reports come one year after the release of a landmark report on death and dying in America by the Institute of Medicine, an influential arm of the National Academy of Sciences in Washington, D.C. The reports’ findings serve as a snapshot of California’s progress in fulfilling five key recommendations laid out in the IOM report.

Almost every large hospital in California offers palliative care, compared to only 44 percent of hospitals with fewer than 50 beds, according to the national report, produced by the Center for Advance Palliative Care and the National Palliative Care Research Center.

There are no programs at all in Alpine, Amador, Colusa, Glenn, Imperial, Inyo, Kern and Lassen counties, based on research by the California HealthCare Foundation and cited in the new state report.

“The problem is that the smaller places see palliative care as a luxury that they cannot afford or a esoteric subspecialty that most patients don’t need,” said Dr. VJ Periyakoil, clinical associate professor of medicine at the Stanford University School of Medicine.

“How can alleviating a patient’s pain and suffering and helping them navigate complex decisions ever be anything other than a vital necessity?” she asked.

California has made major efforts to boost access to palliative care.

In May 2012, Gov. Jerry Brown’s Let’s Get Healthy Task Force featured palliative care as a key component, building on the work of longtime champions such as UCSF, the California HealthCare Foundation and Coalition for Compassionate Care.

In 2014, California lawmakers passed a law requiring Medi-Cal plans to deliver palliative services. Additionally, the California State University system expanded programs to boost certification of health care providers.

But even in the Bay Area, more needs to be done; there are only enough services to meet between one-third and one-half of patient needs, the state report found. Demand will grow as the population ages.

“If everyone who could benefit from palliative care were to ask for it, the system would implode,” said Dr. BJ Miller, executive director at Zen Hospice Project in San Francisco.

More attention needs to be focused on ways to attract future doctors, said Periyakoil, who also directs Stanford’s Palliative Care Education and training program.

“Currently, we have only one palliative medicine physician for every 1,200 terminally ill Americans,” she said.

Boosting pay would help, she said. Despite their greater expertise, they are paid lower than general practitioners. She also recommends adding palliative care into the medical school curriculum of these generalists.

Other experts, such as Zen Hospice’s Miller, worry about the proliferation of vastly different programs.

“I’m grateful for the progress, but we still have many miles to go,” he said. “While the number of hospital PC programs is growing, we have to keep vigilant about quality.”

A tipping point will arrive when enough people are trained — even home health aides, nursing assistants and volunteers — and high-quality palliative care becomes standardized across the nation’s health care delivery spectrum, he said.

“Palliative care has the potential to lead health care into the patient- and relationship-centered care revolution,” he said.

Contact Lisa M. Krieger at 650-492-4098. Follow her at Twitter.com/LisaMKrieger and Facebook.com/Lisa M. Krieger.