Participation in California End of Life Option Act Dips Slightly, Still Lacks Diversity
Advocates Urge Assembly to Pass SB 380 to Improve Access to Peaceful Dying Option
June 29, 2021
A new report on California’s law that allows mentally capable, terminally ill adults to use medical aid in dying to peacefully end their suffering shows that slightly fewer people used the law in 2020 compared to 2019, showing the need to improve access to the law by passing SB 380.
The California Department of Public Health released a report late Monday on the End of Life Option Act showing 667 terminally ill Californians obtained prescriptions for medical aid in dying written by 262 unique physicians, and 435 patients (65%) took the medication in 2020 (.14% of the state’s 314,982 annual deaths).
“Normally, we would expect a slightly higher utilization rate each year after a medical aid-in-dying law takes effect, as more healthcare providers adopt policies supporting terminally ill patients who request this peaceful dying option and more residents learn about it and request it,” said Kim Callinan, president and CEO of Compassion & Choices Action Network, the nonprofit, end-of-life care advocacy organization that led the grassroots campaign to pass the End of Life Option Act. “COVID-19 likely resulted in fewer terminally ill Californians being able to access physicians who could prescribe medical aid in dying. If SB 380 had been in effect last year, more terminally ill Californians would have been able to access the law and not suffer at the end of their life because SB 380 shortens the law’s long waiting period between requests for medication.”
“I’m here as a spouse as someone who’s dying in hospice care to urge you to support SB 380. In April of this year, Will Forest, my beloved of 37 years, was diagnosed with ALS, also known as Lou Gehrig’s disease,” testified Dr. Catherine Sonquist Forest, a clinical associate professor of family and community medicine and a public health specialist in Los Altos, at a hearing last week held by the Assembly Health Committee, which passed SB 380 by a 10-3 vote.
“He was admitted to hospice in May,” Dr. Forest continued. “And he turned to me on the way to his last visit with his physician and told me, ‘Catherine, if you’d not fought for the legal right for me to use medical aid in dying to hasten my inevitable death from this suffering, I would be terrified right now.’ But the actual steps for accessing the option were not easy, even for us … for Will it took over a month, and he suffered immense anxiety about whether he’d be able to access medical aid in dying. Thankfully, we knew to start the process early, but most people don’t.” (Video of Dr. Forest’s testimony is between 1:26-1:29 time code here: https://www.assembly.ca.gov/media/assembly-health-committee-20210622/video.)
Since the law took effect June 9, 2016-Dec. 31, 2020, 2,858 terminally ill Californians have received prescriptions and 1,816 patients (63.5%) took the medication. This medication usage ratio is common among the other jurisdictions where medical aid in dying is utilized. About one-third of terminally ill people who get a prescription for aid-in-dying medication never use it, but just having it on hand gives them a great sense of relief to know they can take it if they need it. In addition, medical aid-in-dying laws often increase hospice usage rates; 87.4 percent of the patients who got a prescription in California were receiving hospice and/or palliative care.
A higher proportion of white people are participating in the law compared to Black Californians, Asian Californians, and Hispanic Californians. In fact, 380 white Californians (87%) utilized the law in 2020, yet they represent 36.5 percent of the state’s population. In contrast, just four Black Californians (0.9%), 33 Asian Californians (7.6%), and 15 Hispanic Californians (3.4%) utilized the law, but these demographic groups represent a higher percentage of the state’s population (Black Californians: 6.5%; Asian Californians: 15.5%; Hispanic Californians: 39.4%).
Three in four Californians (75%) support the End of Life Option Act, according to an October 2019 survey by the California Health Care Foundation, including a majority of every demographic group surveyed: Hispanic Californians (68%), Black Californians (70%); Asian Californians (76%), and White Californians (82%).
Yet, many Californians are unable to access the law because of unnecessary barriers, which include but are not limited to, a minimum 15-day waiting period between the two oral requests for medication. A study by Kaiser Permanente Southern California shows one-third of terminally ill adults who request this end-of-life care option die before completing the time-consuming process, including 21 percent during the 15-day waiting period. If you extrapolate this one-third ratio statewide, it would mean nearly 1,000 Californians (943) have been denied access to a prescription for medical aid in dying since the law took effect.
“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,” concluded Callinan. “One key to achieving this goal is for the Assembly to approve the Senate-passed legislation, SB 380, to improve access to the End of Life Option Act by reducing the waiting period to 48 hours and make this compassionate law permanent.”
Compassion & Choices, the sister organization to Compassion & Choices Action Network, is sponsoring an ongoing bi-lingual public service campaign to encourage Californians to learn about the California End of Life Option Act and talk to their doctor about their end-of-life care preferences. The PSAs feature famed civil rights activist Dolores Huerta, the husband of medical aid-in-dying advocate Brittany Maynard, Dan Diaz, both members of Compassion & Choices Latino Leadership Council, and Rev. Madison Shockley, a pastor of the Pilgrim United Church of Christ in Carlsbad, a member of Compassion & Choices African American Leadership Council.
“When doctors told [my husband] Chris Davis he had less than two weeks to live, that meant he would not survive the minimum 15-day waiting period between the first and second verbal requests for medical aid in dying that the End of Life Option Act requires,” testified Ontario resident Amanda Villegas at an oversight hearing on the law on Feb. 25, 2020 about her husband’s death on June 19, 2019. “Unfortunately my husband died exactly how he feared most: With tubes draining various bodily fluids that protruded his stomach, kidneys, and chest. His swollen skin was bursting from the pressure of edema.”
California is one of 10 states — including Colorado, Hawai‘i, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, and Washington— as well as the District of Columbia, that have authorized medical aid in dying. Collectively, these 11 jurisdictions represent more than one out of five U.S. residents (22%) and have decades of combined experience using this end-of-life care option, starting with Oregon in 1997.
SB 380 is a bipartisan bill that has been endorsed by both the California Democratic Party and the Libertarian Party of California as well as the Dolores Huerta Foundation and the American Nurses Association of California.
For more information about SB 380, Click HERE.
ABOUT COMPASSION & CHOICES ACTION NETWORK/COMPASSION & CHOICES
Compassion & Choices is comprised of two organizations that improve care and expand options at life’s end: Compassion & Choices (501(c)(3)) educates, empowers, defends, and advocates; the Compassion & Choices Action Network (501(c)(4)) focuses exclusively on legislation, ballot campaigns, and limited electoral work.
Paid for by Compassion & Choices Action Network