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09 Jul 2020

Dying-With-Dignity Dilemma: California’s End of Life Option Act Is Being Used More Than Ever—but Not By the State's Majority-Minority Communities

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Civil rights and labor rights icon Dolores Huerta recently made a PSA for Compassion and Choices. Civil rights and labor rights icon Dolores Huerta recently made a PSA for Compassion and Choices.

More critically ill Californians utilized the state’s End of Life Option Act in 2019 than in 2018—but almost all of those who did so were white.

That’s the big takeaway from the California Department of Health’s yearly report, released on June 30, on what is sometimes called the death with dignity law.

Consider: In 2019, some 618 terminally ill adult patients received prescriptions for medical aid in dying, and 405 patients took the medication to end their lives. Of those 405 Californians, 353 of them were white—or 87 percent, even though white people make up just 36.5 percent of the state’s population, according to 2019 U.S. Census estimates. (Full disclosure: My mother-in-law utilized the law in 2016.)

Only 5 Black Californians (1.2 percent), 26 Asian Californians (6.4 percent), and 16 Hispanic Californians (4 percent) utilized the law, although these demographic groups together represent 61.4 percent of the state’s population (Black 6.5 percent; Asian 15.5 percent; Hispanic 39.4 percent).

Compassion and Choices is “the nation’s oldest and largest nonprofit organization working to improve and expand health care options at the end of life,” according to the group’s website. The Independent spoke recently with Brandi Alexander, the national director of constituency at Compassion and Choices, and a Black American.

“I’m not surprised that the African-American community is using (the law) at a lesser rate, because traditionally, we underutilize palliative care overall,” she said. “We’re less likely to complete advance directives, or even have end-of-life conversations. Medical-aid-in-dying is just one of the palliative-care options that are available, along with hospice, and we underutilize hospice as well.

“I think it fits with a pattern in our communities of underutilizing end-of-life care in general. But this is what drives our work as an organization, so that people can be equipped with the information and know what options are available, (as well as) what those options mean to their treatment.”

Are there specific underlying issues that exist in minority communities that contribute to the reticence of people to engage in end-of-life planning?

“I don’t think any group is monolithic,” Alexander said, “but there has been an issue with trust in the medical community overall, so it’s always been a sensitive topic for the (Black) community. Although the law may not fit with (a particular individual’s) personal value system, they do still support it (as an option) for others. So, it makes sense to me that 70 percent (of Black Californians) agree with the option, but that doesn’t mean that they want it for themselves. I do think that personal values have a lot of impact on that number. That’s in addition to the fact that the information is not necessarily available to all patients.”

Patricia González-Portillo is the national Latino media and constituency director for Compassion and Choices.

“I can tell you that Latinos refuse to engage in these conversations,” González-Portillo said. “They’re afraid to talk about death. It’s something that’s known. We dress up for the Day of the Dead, and we wear the outfits, but when it’s time for us to talk about it, we just don’t. We (at Compassion and Choices) want to have people talk to their doctors, to have these conversations that are so important—especially now. This is critical during the pandemic.

“These numbers don’t surprise me, because, again, Latinos unfortunately will wait until death is at our door to start talking about this. That’s including me. My brother died of cancer in 2007, and my mom and I really started focusing on the fact that he was dying just six hours before his death. And it doesn’t work that way. People don’t prepare themselves (and think about), ‘What if I were in this situation?’ We (at Compassion and Choices) are doing everything we can to change that.”

The hope is that a variety of educational-outreach efforts by Compassion and Choices—including public-service announcements, peer-to-peer presentations and clinical presentations where doctors train other doctors about how the End of Life Option Act works—will help increase participation by all segments of the population.

Locally, Eisenhower Medical Center continues to forbid its doctors, staff members and facilities from having anything to do with the End of Life Option Act.

“In the Coachella Valley, we have an action team of volunteers who are trying to get the local hospices and secular health-care systems, like Eisenhower Medical Center, to change their policies to a neutral stance,” said Samantha Trad, California state campaign director for Compassion and Choices. “That means if a doctor wants to support their eligible terminally ill patient in medical-aid-in-dying, they can. In other words, they’d no longer be prohibited.”

Trad said she’s also been busy in Sacramento.

“We meet with legislators. I’ve already met with 75 California legislators this year just to update them on the law and let them know how it’s working,” she said. “The law is working as intended if you can get through all the process. But what we’re hearing is that (some steps) that were meant to be safeguards have turned into barriers and roadblocks. So it’s hard, and it’s a lot of work.”

Kim Callinan, the president and CEO of Compassion and Choices, laid out the challenges ahead for her organization in a June 30 press statement.

“We must all do a better job of ensuring equitable access to this peaceful dying option, so no terminally ill Californian has to needlessly suffer,” Callinan said.

She offered a suggestion for a roadmap that could lead to simpler and quicker patient access: “Oregon recently enacted an amendment to the 1994 Oregon Death with Dignity Act. It allows doctors to waive the waiting period requirements for medical aid in dying if the patient is not expected to live long enough to complete them. This has set a precedent for California and other states to make the same compassionate adjustment to their laws.”

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