Who gets palliative care in California? A look at big disparities across three regions

In the eight-hour vigil before my grandmother’s recent death, I was only dimly aware of the palliative care nurses moving in and out of her hospital room. One smoothed the worry line between her eyebrows, noting how it relaxed as the morphine and anxiety medication took effect. Another instructed my family to keep telling stories about my grandmother as we sat by her bedside, because hearing is one of the last faculties to fade.

My grandmother’s skilled palliative care team, combined with her crystal-clear advanced directive to not use life-preserving measures, allowed her to die with dignity and minimal pain. Despite our grief, my family agreed that her death was as good as most people get. So it struck me with particular force to read a recent study about three Bay Area nursing homes, which found that although 70 percent of more than 200 residents were eligible for palliative care, none had received it. I called the lead author, Dr. Caroline Stephens at the University of California San Francisco, and she told me that although access to palliative care in these facilities was bad, the situation is even more desperate in rural and poor areas of California, where nursing homes are often isolated and understaffed.

Like hospice, palliative care is often used to ease death. But palliative care differs from hospice in that it can also be used to relieve pain and anxiety for people who will live with severe illness for a long time. Studies show that having a specialized palliative care team in place can extend and improve quality of life, and lower health care costs by reducing traumatic ER visits and long hospitalizations. Yet one-third of U.S. hospitals don’t have a palliative care team, and specialists are often not present in nursing homes or assisted-living facilities. Poor people, people in isolated, rural areas, and minorities are least likely to receive this layer of support: researchers at the Brown University of Public Health, for example, have found that African Americans tend to reside in poorer-quality nursing home facilities without palliative care, including counseling about end-of-life decisions.

My reporting for the 2018 California Fellowship will investigate disparities in palliative care access in California, by comparing hospitals and nursing homes in rural El Dorado County, the Central Valley near Sacramento, and the Bay Area. With the fellowship’s support, I will write a feature-length story for The Washington Post, and pitch additional stories to regional publications to ensure the reporting reaches the maximum number of Californians. I will compare trends across facilities and identify individual stories that illustrate the human impact of access to — or the lack of — palliative care. l will also investigate the financial forces that drive the gaps: According to Stephens, for example, providing acute rehabilitation after an emergency room visit is more profitable for nursing homes than hiring a palliative care team. As a consequence, she says, some people undergo risky hospitalizations when their complaints could have been better managed at home.

To put my reporting into context, I will draw on research from UC San Francisco and UC Davis, as well as the Center to Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York, and the Palliative and Advanced Illness Research Center at the University of Pennsylvania. I will also track new political efforts to improve palliative care access California, such as SB 1004, which will implement a new palliative care program in 2018 through the state’s Medicaid program.

Many nursing home staff, patients, and families are unaware that palliative care is an option that can be covered by Medicaid or Medicare. Others may confuse it with hospice, which can only be provided once a person is already dying. Though my reporting for the Center for Health Journalism fellowship, I aim to clarify what Californians can expect and what they should ask for when they or a loved one becomes ill. The early reporting I have completed thus far suggests that Californians are more likely to suffer and die from severe illness without support if they belong to a minority group, live in a rural area or are poor. My goal is to achieve a better understanding of what drives those disparities, and show the human consequences.

[Photo by Ali Moradmand via Flickr.]