Participation in California End of Life Option Act Increases, But Still Lacks Diversity

Group Calls for Ensuring All Eligible Patients Can Access Peaceful Dying Option

Compassion & Choices says that 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 more people are using the law, but it needs to be easier to access.

The California Department of Public Health released a report Tuesday afternoon on the End of Life Option Act showing 618 terminally ill, adult patients received prescriptions written by 246 unique physicians for medical aid in dying in 2019, and 405 patients took the medication in 2019. That is a significant improvement in participation compared to the department’s 2018 report. It showed 452 terminally ill, adult patients received prescriptions written by 180 unique physicians for medical aid in dying to peacefully end their suffering, and 337 of the patients took the medication in 2018.

A higher proportion of whites are participating in the law compared to Blacks, Asians, and Hispanics. In fact, 353 white Californians (87%) utilized the law in 2019, yet they represent 36.5 percent of the state’s population. In contrast, just five Black Californians (1.2%), 26 Asian Californians (6.4%), and 16 Hispanic Californians (4%) utilized the law, but these demographic groups represent a higher percentage of the state’s population (Black: 6.5%; Asian: 15.5%; Hispanic: 39.4%).

The barriers to access the law include but are not limited to, a 15-day waiting period between the first and second requests for medication, particularly since the entire process often takes significantly longer. 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.

“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,” said Kim Callinan, president and CEO of Compassion & Choices. “Oregon recently enacted an amendment to the 1994 Oregon Death with Dignity Act that 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.”

To address this reality, Compassion & Choices 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.

[caption id="attachment_7896" align="alignright" width="200"]Chris Davis & Amanda Villegas wedding photoChris Davis & Amanda Villegas[/caption]

“When doctors told [my husband] Chris 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 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.”

“Soon after starting the process to request the medication to die peacefully, doctors urged [my husband] Larry to participate in a clinical trial for individuals with stage IV bowel cancer...after only one treatment Larry developed a fistula, which disqualified him from continuing in the clinical trial,” said Orangevale resident Sharon Fells, who testified at the law’s oversight hearing on Feb. 25 about how her husband finally was able to use medical aid in dying to peacefully end his suffering on Jan. 17, 2019. “My husband entered the hospital on Christmas Day with a flesh-eating bacteria and was given three days to live. He survived three more weeks but was in an incredible amount of pain. He was ultimately able to obtain and use the medication, but the process was very challenging and difficult for both of us.”

Since the California law took effect from June 9, 2016, through December 31, 2019, 1,985 state residents have received prescriptions for medical aid in dying, 1,283 individuals (64.6%) have died from ingesting the medications and 86.7 percent of these people were receiving hospice and/or palliative care.

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: Latinos (68%), Blacks (70%); Asians (76%), and Whites (82%).

California is one of nine states — including Colorado, Hawai‘i, Maine, Montana, New Jersey, Oregon, Vermont, and Washington— as well as the District of Columbia, that have authorized medical aid in dying. Collectively, these 10 jurisdictions represent more than one out of five U.S. residents (22%) and have more than 40 years of combined experience using this end-of-life care option.