By Roxanne Nelson, RN, BSN
In the United States, medical aid in dying (MAID) is used mostly by white patients, even after states with more racially and ethnically diverse populations legalized the practice.
Pondering why this is the case were speakers here at the National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020 during a session on ethnic and cultural considerations in aid in dying.
Factors such as culture and religious beliefs may play a role in preventing some individuals from considering this option, but a 2019 survey from the California Health Care Foundation found that there was support for MAID among African Americans.
“When asked if race and ethnicity prevented you from getting the services and healthcare you needed, 43% of black respondents said yes, that it has happened to them,” said Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.
“But when asked if they would support the right to die when terminally ill, 70% of blacks and 82% of whites said yes,” said DeWolf.
“This is surprising, since it is almost at the level of the general population, and given the unequal access to medical care and unequal outcomes, they still believe that medical aid in dying should be legal,” she continued.
“We don’t bring this up to suggest complacency, but it brings up some interesting conversation to be had,” she added.
A recent study found that in Oregon and Washington, the two states where the practice has been legal for the longest period, most patients were non-Hispanic white individuals with some level of college education (JAMA Netw Open. 2019;2:e198648.)
In 2016, MAID became legal in California, a state with a much larger and far more diverse population compared to Oregon and Washington. Even so, about 88% of people who use California’s physician-assisted death law are white, according to 2018 data from the California Department of Public Health.
Speaking to Patients
There is an overall lack of participation by black patients in all programs related to end-of-life care, noted Tracey Bush, MSW, LCSW, regional practice leader, End of Life Option Act Program, Kaiser Permanente, Southern California.
“This includes aid in dying, and we consider this lack to be a healthcare disparity,” she said.
“We would be remiss to look at the disparities and participation in these programs without thinking about the disparities in the rest of our healthcare system,” she explained. “We need to think about where the line can be drawn between education, empowerment, and recruitment,” she explained.
From a programmatic perspective, she pointed out, information, pamphlets, and staffing are designed in a way that couches the MAID decision as individualistic, but not all patients have this point of view.
“My argument is that this population doesn’t really view medical decision making in that manner,” she said. “So are we designing our materials and having conversations in a way that really speaks to these patients?”
She also emphasized the need for a diverse care team across the board with regard to ideas, perspectives, cultural beliefs, gender, and ethnicity.
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