In California, people who are terminally ill have choices about how to spend their final days. But patients from minority backgrounds might not know about all of the options.
Roughly 88 percent of people using California’s physician-assisted death law are white, according to new data from the California Department of Public Health.
That’s been the case every year since the law took effect in 2016. It allows people with fewer than six months to live, who have enough cognitive function to consent, to request lethal medication from their physicians to end their own lives.
Jill Weinberg, a sociologist at Tufts University, has been tracking the roll-out of aid-in-dying laws across the U.S. She notes that many of the states that have passed these policies so far, such as Oregon, Washington, and Vermont, are primarily white.
“California is the first state in which we’re starting to expect to see more diversity,” she said. “And in fact, we’re not seeing that.”
Last year 452 people received a prescription and 337 people died from ingesting drugs acquired through the law, according to the CDPH data. Experts say the racial breakdown of who’s using the option reflects a larger problem of who’s accessing treatment for terminal illness.
“Hospice care is mostly received by middle-income white patients,” said Stanford University geriatrician Vyjeyanthi Periyakoil. “If you extrapolate from that, you’re going to see the same patterns.”
She said distrust keeps many people of color from speaking with their physicians about death. These patients also tend to get diagnosed with cancer and other terminal illnesses at more advanced stages, which gives them less time to think about options.
Reverend Cynthia Carter Perrilliat with the Alameda County Care Alliance, a faith-based organization serving mostly African Americans, made a point of inviting health workers in to talk about the law when it passed. She says her congregants had a lot of concerns.
“Issues around suicide and if that is indeed a suicidal act,” she said. “Naturally it raises a lot of questions, and that’s why I think it’s tremendously important to keep the conversation going, particularly in communities of color where we’re dealing with racial disparities at the end of life.”
The skewed numbers are likely due to issues of medical access and philosophical differences. Geriatrician Elana Shpall works at a mostly-Latino senior center called On Lok in San Francisco. She says most of her patients wouldn’t be interested in using the law.
“We talk a lot about their end of life choices and planning for the future, and most of them say something like ‘when God wills it, it will be my time’,” she said. “Based on my population, I would say it’s a big cultural barrier.”
Compassion and Choices, a national nonprofit that supports physician assisted death, says everyone should feel empowered to make their own decisions about death. The group has a Latino council and a Hispanic council working on raising awareness about these laws in diverse communities.
“The information that’s written right now is written primarily for a white audience,” said executive director Kim Callinan. “We need to have messages and materials that will resonate given the culture and the community we’re trying to reach, from credible messengers in that community.”
Physicians are not required to write lethal prescriptions under the End of Life Option Act.
Correction: A previous version of this story misidentified the advisory groups for Compassion and Choices. They have Latino and Hispanic councils.