When I started practicing medicine more than three decades ago, there was no formal field of palliative care. Today, it’s an established medical specialty that has gained recognition and respect in the US because it addresses patient and family needs otherwise left unmet by busy doctors, nurses, and social workers.
Those trained in palliative care have the skills to define and adhere to patients’ goals for care — to manage pain and symptoms, address psychosocial and spiritual issues, and coordinate care among multiple providers and settings. Through fellowship training or continuing education, these providers are learning to help people with serious illness better manage their health, make informed choices, and improve the quality of their lives.
Thanks to the dedicated pursuit of appropriate care for patients with serious illness, the number of interdisciplinary teams offering the extra layer of support that palliative care provides has risen steadily over the past decade. Beginning in 2008, CHCF sought to ensure that each of California’s 17 acute care public hospitals offered team-based inpatient palliative care services. Public hospitals were enthusiastic partners, and together we met the goal by developing, growing, and sustaining programs in all public hospitals — providing a true safety net for uninsured and vulnerable patients.
The prevalence and sophistication of palliative care programs outside the safety net has also grown over the last decade — to the point that most large hospitals now have inpatient palliative care teams. Outside the hospital, a variety of organizations, including hospices, medical groups, and home health agencies, sponsor palliative care programs in the community. Still, Californians living in certain geographic regions have limited access to this gold-standard approach to managing serious illness.
Research released this month by CHCF shows that palliative care is unavailable to many Californians due to a general shortage in supply and uneven distribution of services across the state. The data visualization “Uneven Terrain: Mapping Palliative Care Need and Supply in California” illustrates the estimated number of patients who need palliative care in each California county, the number of palliative care programs in that same area, the volume of patients served, and the resulting sufficiency (or insufficiency) of the palliative care supply.
Our research reveals that 22 California counties lack any access to community-based palliative care, and 19 lack access to in-patient palliative care. Of the counties that do have access, it’s not enough to meet the need — on the outpatient side, 22 counties have supply that meets less than a quarter of the estimated need, and for hospitalized patients, 12 counties have supply that meets less than a quarter of the estimated need.
These figures echo a serious national shortage of palliative care teams — a workforce issue that is expected to take on greater importance as demand increases due to the aging of the baby boomer population and the rise in population of individuals with serious chronic illness.
Ensuring timely access to palliative care services will rely on more than just educating providers. To this end, CHCF is funding partnerships of payers and providers to develop plans to deliver and pay for community-based palliative care.
And perhaps the most promising sign: On January 1, 2015, California Senate Bill 1004 became law, requiring the Department of Health Care Services to establish standards and provide technical assistance to help Medi-Cal managed care plans to deliver palliative care services to their beneficiaries. When fully implemented, this landmark legislation will expand access to services that relieve suffering and enhance the quality of life of patients with serious illnesses — regardless of their age or prognosis.
There is still a lot of work to be done to turn statute into reality. Payers and providers need to address gaps in access, eligibility guidelines, reimbursement policies, and quality metrics to operationalize team-based care. They must also learn to identify and reach patients who are good candidates for palliative care earlier in the progression of their illness. CHCF is committed to supporting the continued evolution of the field of palliative care.
Dr. Sandra R. Hernández is president and CEO of the California Health Care Foundation. Prior to joining CHCF, Sandra was CEO of The San Francisco Foundation, which she led for 16 years. She previously served as director of public health for the City and County of San Francisco. She also co-chaired San Francisco’s Universal Healthcare Council, which designed Healthy San Francisco, an innovative health access program for the uninsured.
Sandra is an assistant clinical professor at the University of California, San Francisco, School of Medicine. She practiced at San Francisco General Hospital in the AIDS clinic from 1984 to 2016. She was appointed by Governor Jerry Brown to the Covered California board of directors in February 2018. She currently serves on the Betty Irene Moore School of Nursing Advisory Council at UC Davis and the UC Regents Committee on Health Services. Sandra served on the External Advisory Committee at the Stanford Center for Population Health Sciences in 2016. Sandra is a graduate of Yale University, the Tufts School of Medicine, and the certificate program for senior executives in state and local government at Harvard University’s John F. Kennedy School of Government.