Editor's Note: Hours after the publication of this piece, the Alzheimer's Association issued a press release announcing it would sever its relationship with Compassion & Choices. The Alzheimer's Association said that it had "failed to do appropriate due diligence" and that the values of Compassion & Choices are "inconsistent with those of the Association." Our original reporting, which led to this announcement, is below.
Selling assisted suicide to "historically marginalized communities" is a difficult business, because it tends to kill prospective clients and smacks of eugenics. Compassion & Choices, the nation's largest and most active assisted suicide lobbying group, has found a new way to remedy this. It has enlisted the help—and data—of a trusted brand: the Alzheimer's Association.
It's a bizarre fit. While the Alzheimer's Association spends considerable resources to overcome what it describes as "the stigma" of Alzheimer's and dementia, the CEO of Compassion & Choices, Kim Callinan, has described dementia as "a fate worse than death."
Compassion & Choices was known as the Hemlock Society until the group's support for fellow member Jack Kevorkian—and his increasing number of so-called mercy killings—tainted the brand. While the Hemlock Society celebrated Kevorkian's actions, the Alzheimer's Association issued a statement in opposition, noting that "we must … affirm the right to dignity and life for every Alzheimer patient and cannot condone suicide."
George Soros, whose mother was a member of the Hemlock Society, poured millions into the assisted suicide movement through his Open Society Foundations, in part to help the Hemlock Society rebrand itself as Compassion & Choices.
Once at loggerheads, Compassion & Choices and the Alzheimer's Association announced last December that, together, they will focus on a shared effort to improve "end-of-life care" to people with dementia in the "Black, Latino, Asian American Native Hawaiian Pacific Islander (AANHPI), and LGBTQ communities," according to a press release from Compassion & Choices. Together, the organizations will create national webinars, host conferences and local events, share data, "and more," according to the press release.
Compassion & Choices appears more enthusiastic about the partnership than its counterpart. The organization issued two press releases while the Alzheimer's Association said nothing. Neither organization responded to multiple interview requests. Days before publication, in a phone call with a director of diversity, equity, and inclusion engagement, the Alzheimer's Association agreed to send in comments to Washington Free Beacon about key questions raised from this report. By 5:00 p.m. on Friday, the association had not done so.
Now critics are raising concerns about the Alzheimer's Association's new partnership—which, contrary to its own policy to share "partnership information with all constituents," remains undisclosed on its own website.
Compassion & Choices isn't an "end-of-life care" organization but an assisted suicide lobby group, although its website describes the practice as "medical aid in dying." It spends considerable effort redefining what "end-of-life care" encompasses, and between 2017 and 2020, Compassion & Choices spent over $2 million on lobbying for assisted suicide, despite its own admission that certain people who shouldn't qualify for assisted suicide in the United States have already qualified.
"It is a very bad look for the Alzheimer's Association, who have done so much for patients, to form a partnership with the leading proponent organization for assisted suicide laws, putting people with dementia and other intellectual disabilities at grave risk of deadly harm," said Matt Vallière, the executive director of the Patients' Rights Action Fund, an advocacy group against legalizing assisted suicide.
From DEI to Please Die
There's a reason for Compassion & Choices's interest in "historically underserved communities": Non-whites are just not that interested in assisted suicide. Of the more than 2,100 assisted deaths in Oregon, only 1 has been African American; in the state of Washington, 92 percent of assisted suicide deaths have been white.
So Compassion & Choices has invested tremendous effort to disseminate "end-of-life planning educational resources" to "underserved communities," ramping up to 22,380 pamphlets and guides disseminated in 2020 from 0 in 2018.
Much of this material is written from the point of view of an assisted suicide lobby. An advanced directive is a document from a patient that provides instructions about how to make future medical decisions if the patient lacks the capacity to do so. Unlike other advanced directives in use, Compassion & Choices's advanced directive for dementia patients has no discussion of what dementia is, the life expectancy—between 5 to 20 years—and the stages of dementia. Instead, dementia is described as "unnecessary suffering."
The Alzheimer's Association is key to this effort. Unlike Compassion & Choices, its brand is a trusted and known entity. With this partnership, Compassion & Choices can instead use the Alzheimer's Association's reputation and contacts with minority groups to disseminate resources that put a gloss on assisted suicide under the guise of "end-of-life care."
Compassion & Choices's press release included a statement from the chief diversity, equity, and inclusion officer at the Alzheimer's Association, Carl V. Hill. "We are excited to collaborate with Compassion & Choices to expand our reach, connecting families affected by Alzheimer's and other dementia to disease information, education programs, and access to care and support services," Hill said.
But even with this partnership, it seems unlikely that accessing resources on assisted suicide will persuade black Americans in underserved communities to choose a medical treatment that causes death. Even those who don't feel well served by the health care system turn away from it, according to Joel Zivot, an intensive care doctor and a professor at Atlanta's Emory University. "I can tell you that in the U.S., or where I'm practicing … my patients who feel disenfranchised from health care … are not demanding to die. They're demanding to live."
Zivot says some of his patients decline Do Not Resuscitate forms, and they tend to want to continue life-saving treatments. "The people who feel like the health care system had failed them their entire life," he says, are the same people who say, "Now you want me to roll over and die? No, thank you."
The situation is also pronounced with dementia patients. Although black participants in Alzheimer's research studies are twice as likely to develop dementia than white participants, they are 35 percent less likely to be diagnosed with it.
Fayron Epps, an assistant professor in nursing also at Emory University, created a specialized program for African-American churches to support families facing Alzheimer's and dementia. While she declined to speak about the Alzheimer's Association’s partnership—she is a board member of the Alzheimer's Association in Georgia—she agreed to talk about what supports black patients need.
The problem, Epps said, is that "minority racial ethnic groups" tend to be "in underserved areas," which "means that they do not have the resources" that are available to others. They lack adult day centers, adequate medical care, and the education required to detect Alzheimer's disease.
Without a diagnosis, these same families are unable to access the support that should be available to them. And even with these resources, family members in underserved and under-resourced communities must pick up the slack. "Historically, you know, people have said that black families keep their loved ones at home," Epps said. "I can say I've seen that in my work, that a lot of black families do the best that they can."
But sometimes, the best isn't enough. These families need help, too. The most telling part of my interview with Epps was when I asked her about her work with end-of-life patients. "I don't deal with end-of-life care patients," Epps said. Detected early enough, Alzheimer's patients tend to live for years after diagnosis.
But in jurisdictions with expansive euthanasia and assisted suicide programs, these same patients are automatically coded as "end-of-life." Anyone with a diagnosis of Alzheimer's in Canada, for instance, is eligible to receive "Medical Assistance in Dying" immediately after being approved, without any legislated delay. Epps looked surprised. "That's interesting. Okay. All right," she said.
Alexander Raikin is a writer in Washington, D.C.
Published under: Assisted Suicide , Euthanasia , Health Care , Medical Ethics