Advocacy Group Praises New Bill to Improve, Keep California End of Life Option Act
Legislation (SB 380) Introduced to Remove Barriers to Access Compassionate Law
February 11, 2021
Compassion & Choices Action Network today joined California lawmakers in a virtual news conference today to announce the introduction of a bill to improve access to the California End of Life Option Act and prevent it from expiring in a few years.
The End of Life Option Act took effect on June 9, 2016, authorizing the compassionate option of medical aid in dying for terminally ill, mentally capable adults to get a prescription they can take to end their life peacefully. The law included a sunset provision that would expire at the end of 2025 unless new legislation is passed.
The new bill to amend the law, Senate Bill (SB) 380, would remove regulatory roadblocks to access the law that impede or outright prevent hundreds of Californians each year from using medical aid in dying to peacefully end their suffering. Here is a fact sheet about SB 380.
“And so he [my husband Chris] told me … ‘I don’t want to be a lifeless shell,’” said San Bernardino County resident Amanda Villegas in a 3-minute video shown during the virtual news conference (video is available at bit.ly/CaEndOfLifeOptionActAmendment. “‘I want to be able to say goodbye to those I love.’ And people who are suffering like my late husband Chris should have the option to limit their excruciating pain if they so choose.”
Among other things, SB 380 would:
- Waive the law’s mandatory 15-day waiting period for qualified terminally ill patients between the two oral requests for aid-in-dying medication if the physician determines they will not survive it. (Oregon enacted legislation to waive its 15-day waiting period).
- Require that healthcare facilities provide accurate information to patients about medical aid in dying who request it or refer them to supportive facilities to get this information.
- Eliminate the End of Life Option Act’s scheduled expiration date at the end of 2025.
“The most egregious offender is the mandatory minimum 15-day waiting period; it should more appropriately be named a suffering period,” Kim Callinan, president and CEO of Compassion & Choices Action Network, which ran the successful grassroots campaign to pass the End of Life Option Act. “ While some Californians are able to access the law, unfortunately, too many can’t get through the 13-step process. To improve the experience for dying Californians, the Legislature must act by improving access to the law and making it permanent.”
“[My 42-year-old wife] Christine was finally able to find a provider who would write the prescription at UCLA, 200 miles away from our home,” said Tom Whaley, whose late wife nearly was unable to access the law in San Luis Obispo. “She died in our bed, at peace, in my arms, with her favorite playlist playing in the background, surrounded by her family. Most terminally ill people who try to utilize the End of Life Option Act are much older and weaker than Christine was, so they may not have been able to overcome the obstacles she did to use the law.”
“We have heard from many family members of terminally ill people…who have accessed the End of Life Option Act since the law took effect. But we have also heard stories…and seen studies that tell us that we need to reduce the bureaucratic 13-step process to access the law and increase transparency so that Californians who need this option have an easier time accessing the law,” said the bill’s co-author Senator Susan Talamantes Eggman (District 5), a former hospice worker who represents San Joaquin County and portions of Stanislaus and Sacramento Counties. “We created this legislation with input from medical providers, physicians and patients to ensure that the law can work as intended for ALL eligible terminally ill patients, not just those privileged enough to be able to access it.”
“This bill will improve the End of Life Option Act by eliminating the sunset once and for all and removing the time-consuming barriers that terminal patients are forced to endure in order to access the law,” said bill co-author Assemblymember Jim Wood (District 2), who represents Del Norte, Trinity, Humboldt, and Mendocino counties, and northern and coastal Sonoma County. “The people who have taken advantage of this law are folks who desperately want to live, but whose prognosis has robbed them of that possibility – and they want the option to pass peacefully, not painfully.”
Compassion & Choices Action Network and Compassion & Choices has been calling upon California lawmakers to permanently reauthorize the law with amendments to remove barriers, especially for underserved ethnic, racially diverse and rural communities, ensuring all eligible terminally ill people can access it, while preserving its essential safeguards.
“I worked long hours to help pass the End of Life Option Act in 2015 and I am working hard to make sure Californians don’t lose this important and compassionate end-of-life option,” said Dolores Huerta, president of the Dolores Huerta Foundation.
The COVID-19 pandemic has exposed the health disparities in access to end-of-life care among ethnic and racially diverse communities. A higher proportion of white people in California are participating in medical aid in dying compared to Black people, Asian people, and Hispanic people, despite the fact that a strong majority of people in all communities (Asian: 76%; Black: 70%; Latino: 68%; white: 82%) “support people having this option,” according to a 2019 statewide survey commissioned by the California Health Care Foundation (see page 14).
“As a minister, I sit bedside with people at the end of their lives and I have watched too many terminally ill Californians suffer needlessly while dying,” said Rev Madison Shockley, pastor of the Pilgrim United Church of Christ in Carlsbad, CA and member of the Compassion & Choices Board of Directors and African American Leadership Council. “I am concerned about the hurdles…that make it difficult for dying people to use this compassionate law to die peacefully. I think this is especially an issue in communities of color, where patients often don’t have access to the same resources and referral networks that can best inform them about their end-of-life options.”
An audit of a subset of 65 Sutter Health’s patients who requested medical aid in dying over the last two years revealed that 16 (25%) of them died in exactly the way they didn’t want during the mandatory 15-day waiting period.
“That mandatory minimum waiting period is a huge barrier for some patients,” said Dr. Ryan Spielvogel, a family medicine specialist who works for Sutter Health in Sacramento. “[It’s] based on a flawed premise…that a patient has only started thinking about aid in dying when they give their first verbal request to the physician. I can say unequivocally and without exception that every one of the 80+ patients that I have overseen through the process had been thinking about it for weeks or months before their first visit.”
Since the End of Life Option Act took effect on June 9, 2016, data collected by the California Department of Public Health through December 31, 2019, shows that nearly 2,000 mentally capable, terminally ill individuals with six months or less to live have received a prescription for medical aid-in-dying medication to peacefully end unbearable suffering.
A study by Kaiser Permanente Southern California shows one-third of terminally ill adults who request to use the End of Life Option Act die before completing the time-consuming process, which includes a 15-day waiting period and often takes weeks or months to finish.” Using this one-third ratio, nearly 1,000 individuals statewide have died before obtaining a prescription (approximately 275 people on an annual basis) vs. the nearly 2,000 who completed the process and received prescriptions for medical aid in dying.
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.