San Francisco Chronicle - (Sunday)
Beset by long waits, assisted death law may be streamlined
Will Forest’s battle with an unclassified motor neuron disease progressed far more quickly than anyone expected. The 65yearold Santa Cruz resident was still playing disc golf last December; by the spring, his bodily function was diminishing so rapidly that he feared he might suffocate or choke on his own saliva.
Not wanting to spend his final months in terror, his wife said, Forest turned to California’s 5yearold assisted death law, which allows terminally ill patients to obtain a lethal prescription and end their lives on their own terms. But as provisions of the law designed to prevent misuse turned into obstacles for Forest, he nearly missed his chance, as potentially thousands of other Californians also have.
“We barely got this right,” said his wife, Catherine Sonquist Forest, herself a physician who has trained doctors across the state in the assisted death law.
Forest’s primary doctor was part of a Catholic health care network that, due to religious objections, does not offer assisted death under the law, which is voluntary. Though Forest eventually connected to a different physician through the specialized care he received at another clinic, the wait for each appointment took weeks.
During his second visit to the doctor in May, further delayed by a mandatory 15day waiting period, Forest made a final request for the lethal medication. That was the last time he left the house; he ingested the pill a month and a half later.
“How cruel at the end of his life, and for me to be spending my time, and his precious time, on this,” his widow said.
Once unthinkable, assisted death has established itself as a widely accepted option at the end of life since first becoming available to Californians in June 2016. But it remains a rare act: Only about 400 people on average die each year in the state by taking the doctorprescribed drug.
Now, halfway through a decadelong trial run, state legislators are moving to streamline the assisted death process and remove some of the barriers that advocates say have prevented the law from becoming more widely used, particularly among lowincome residents and people of color.
Currently, California adults seeking the lethal medication must confirm with two doctors that they have less than six months to live and are mentally capable of making their own medical decisions. They must make two spoken requests, a minimum of 15 days apart, and submit a written request, signed and dated by two witnesses, to the physician who will write them a prescription. Then they must fill out a final attestation, 48 hours before ingesting the drug, that they are doing so voluntarily.
The stringent rules were put in place to assuage concerns — raised by Catholic groups and other religiouslyaffiliated organizations, as well as advocates for disabled people and some lawmakers — that vulnerable patients might be coerced into ending their lives prematurely or change their minds after initially seeking a lethal prescription. Opponents also worried that the high cost of medical care could pressure some patients into choosing death instead.
But six years after the issue dominated Capitol debate, passing only with lastminute political maneuvering and hours of emotional hearings, a followup measure has generated relatively little controversy.
The new legislation, SB380, would make several revisions — most significantly, reducing the 15day waiting period to just 48 hours — and eliminate a 10year sunset for the assisted death law, which will expire in 2026 unless extended. The bill won overwhelming approval in the Senate in May and is moving through the committee process in the Assembly, even picking up support from a few lawmakers who opposed the original law.
“There were a lot of fears, as there always is when you try something new. None of the fears has been realized,” said state Sen. Susan Talamantes Eggman, a Democrat from Stockton who is carrying the bill. “It has been a real sense of comfort for a lot of people.”
Opponents say it is too soon to enshrine the law permanently, especially before the full effect of the proposed changes is understood.
They argue that California does not yet know enough about who is using the law and why, because the state collects less information than some others with similar policies. (Assisted death is now legal in 10 states and Washington, D.C.) The California Department of Public Health tracks the demographics of who obtains lethal prescriptions, what their underlying illnesses were and where they took the drugs, but not their endoflife concerns, whether they were referred for a psychiatric eval
California has few assisted deaths
Since taking effect in June 2016, California’s assisted death law has rarely been applied. Here is how many people each year have obtained a prescription for the lethal medication and how many have died by taking it.
Prescriptions written
0
Deaths uation or how long it took them to die after taking the medication, as Oregon and Washington do.
Sawait Seyoum, a senior policy advocate for Disability Rights California, said shortening the waiting period to 48 hours, and other changes sought in the bill, limit the opportunity for doctors to identify potential abuse. The state does not require physicians to be present when their patients swallow the lethal drug.
“There’s no oversight of the fatal dose once it’s been dispensed,” Seyoum said. “There’s no way to know if the patient has changed his or her mind.”
Critics cannot point to any specific cases of abuse, however. Eggman said the law has clearly been working and there is no reason to wait five more years to make it permanent. She said she is pursuing changes to the process in the same bill to give opponents fewer opportunities to challenge the law, which survived a lengthy legal fight that ended in the California Supreme Court.
Other provisions of Eggman’s measure would eliminate the final attestation for patients before they take the lethal medication and require doctors, even if they refuse to participate in assisted death, to document a patient’s request and transfer their medical record.
Supporters say the most important change is to shorten the waiting period between the two spoken requests, which they say prolongs the anxiety and pain of patients who have little time left without providing any apparent additional safety benefit.
“It just makes no sense. It’s arbitrary, and it’s an undue burden to the patients. And they suffer for it, literally,” said Ryan Spielvogel, a family medicine physician in Sacramento.
Over the past five years, 21 of Spielvogel’s patients have died by ingesting the lethal medication. He said hearing about their goals for the end of their lives, and from appreciative families who were able to memorialize their loved ones while they were still around, has changed his whole perspective on what death can and should be like. But dozens more who have come to his practice, seeking to die on their own terms, never made it that far. While Spielvogel supports patients making two separate spoken requests, since it gives him multiple opportunities to touch base with them about their decision, he estimates that about a quarter of those he has worked with died during the 15day wait.
“When you see patients fall into those holes, it’s heartbreaking,” he said.
It’s unknown exactly how many people who want to access the law are unable to. A 2018 study by Kaiser Permanente Southern California found that of 379 patients who inquired about assisted death during its first year of availability, a third died before completing the process or became too ill to continue, including 39 who had made their first spoken request to a physician and were waiting for the second. Fewer than a quarter of the patients ultimately received the lethal prescription.
That means there could be thousands of Californians in recent years who have unsuccessfully pursued assisted death, though the number taking advantage of the law remains low: Only 2,858 state residents obtained a prescription and 1,816 died by ingesting the medication between June 2016 and the end of last year, according to recently released state data.
In 2020, 435 people died by taking the lethal drug, among nearly 315,000 deaths in the state. Nearly nine in 10 were white, and more than threequarters had at least some college education, disproportionate for the population.
The push to expand use of the law, including outreach to raise awareness in communities of color, infuriates some opponents of assisted death.
Serena Alvarez, executive director of Salvador E. Alvarez Institute for NonViolence, which advocates for lowincome Latino families in Santa Clara County, said making it easier to die would be recklessly ignorant when the poorest and most marginalized patients lack proper care. She worries about financially burdened families choosing assisted death because they do not feel they have any other options.
Alvarez urged assisted death advocates to turn their attention instead to raising provider rates for MediCal, the state’s health insurance program for the poor, which serves a third of Californians. Many doctors decline to participate in MediCal because reimbursements from the state are so low, she said, leaving patients without adequate services.
“If they really had compassion, they would come hear what our communities need,” Alvarez said. “People are fighting for their lives and you think what people want is faster access to suicide?”
Eggman, who is Latina, said the Legislature is working on both issues simultaneously and has taken steps in recent years to extend health care to as many people as possible. She believes that lingering resistance to the assisted death law is rooted not in policy but in grief — many opponents are still mourning loved ones they lost and cannot imagine having had less time with them at the end.
“That idea is so quite culturally backwards for people. They can’t get their arms around it,” Eggman said.
Catherine Forest said her husband chose assisted death not out of a desire to die, but because knowing he could end his life before the suffering got unbearable allowed him to make the most of his final weeks with his family.
As he lay in bed, barely able to speak above a whisper, Forest put together a list of books that had influenced his perspective on how the world works and a Spotify playlist of his favorite music for his children. He had hoped to make it at least until midJuly, when his son would compete in his first disc golf tournament.
But at the end of June, it became clear that Forest would soon lose the physical ability to administer the lethal dose himself, a requirement of the law. He took it surrounded by his family, his wife said, a peaceful death that spared him further deterioration.
“He so desperately wanted to live,” she said. But her husband took solace in a lyric from a favorite song by the rock artist Bruce Cockburn: