Physician Aid in Dying Used Mostly by White Patients

Roxanne Nelson, RN, BSN

March 04, 2020

BERKELEY ― 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.

"As clinicians, we approach patients in terms of what they want or need or what the law allows," said Bush. She noted that in many jurisdictions, a one-to-one physician-to-patient conversation is required to assess for coercion (such as from relatives).

On the basis of the conversation, it may not be clear whether the patient can or should include their loved ones in these considerations, she explained. "Conversations need to be one on one between the patient and physician, and I'm not arguing that. What I'm saying is that the conversation should not just be about the individual but also include the family."

Without family support, she noted, the ability of the patient to follow through on a practical and emotional level is much diminished, if not impossible.

Why Do Patients Make This Choice?

So the question is, why are black patients not accessing aid in dying as an option, even though the survey shows that they believe it should be legal?

Bush pointed out that understanding patients' lack of interest in MAID as a choice means examining why patients who actually make this choice do so.

Overall, "majority" race patients indicate they are pursuing medical aid in dying in order to have a sense of control at the end of their lives. "These are patients who are accustomed to having control of their lives, including their healthcare," she said. "Minority patients may not have such experiences, and these concepts may be foreign to our patients who have an alternate cultural experience in our community, our medical systems, and in our country.

"We need to think about why patients who make this choice do so," said Bush, "and when we approach African American patients, do we understand that these reasons may not apply to them? If they don't speak to them, they aren't going to see it as an option."

There needs to be a way of reframing the conversation into one that fits their sociocultural constructs and reality, Bush said. She stressed the need for cultural competence in both programs and actions. "We know from helping patients with other illnesses that sameness is not about equality," she emphasized. "For example, if we are helping Latino patients with blood sugar control or Asians with smoking cessation, we know that sameness doesn't work. We must use interventions that work for that population."

Other problems are mistrust and a limited or lack of awareness of MAID as an option.

"We have patients who have been poorly managed or had a delayed diagnosis," Bush said. "So they may be thinking, 'You weren't able to give me a diagnosis, but now you me want me to participate in an end-of-life program, so why should I trust you?' There may be a little suspicion there."

In addition, there is the question of how clinicians can inform patients who are unaware, not well educated, and uninsured or underinsured. "If the only access patients have is if they inquire, then how are they supposed to inquire if they don't know about it?" said Bush. "It's like a tax deduction — if I don't know about it, then how do I take it?"

Bush explained that when clinicians think about disparities in healthcare or why African American patients may refuse or not request aid in dying, "we think about care from our perspective," such as having a "good death."

Advocating for Change

Alan Elbaum, MS, a medical student at the UC Berkeley–UC San Francisco Joint Medical Program who recently coauthored a paper on race and physician-assisted death (currently awaiting publication), offered some additional thoughts on the issue.

"I realize that no one goes around trying to convince people to accept aid in dying, and it is legally and entirely patient driven," he said. "But that doesn't exempt us from reckoning with the implications of aid in dying and the populations who don't seek it out or the marginalized populations whose deaths are unjust and whose medical care is unequal."

It is essential for any practitioner who provides aid in dying to understand the resistance that many African Americans have to palliative care and aid in dying, but "really it's for anyone who interacts with seriously ill African Americans.

"It means acknowledging the racism that is intrinsic in our culture and then use the power that comes with the clinician role to advocate for change," Elbaum said.

He added that the whole conception of death with dignity in the medical culture, the secular culture, and the white culture is only one version. "This suggests the tremendous successes of the movement of aid in dying and the tremendous help it has given to many ― but even if it has not harmed African Americans, it risks further marginalizing their voices and values."

National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020: February 14–15, 2020.

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