Ever since the California End of Life Option Act (ELOA) went into effect in 2016, it’s been under legal attack—and the latest lawsuit, filed on April 25, came from what some might consider to be a surprising source.
A coalition of disabled persons’ support groups—the United Spinal Association, Not Dead Yet, the Institute for Patients’ Rights, and Communities Actively Living Independent and Free—joined with two California citizens, Lonnie VanHook and Ingrid Tischer, to file a lawsuit seeking to rescind the ELOA, which allows qualifying terminally ill Californians to use medication to end their lives.
The suit specifically targets changes made to the law via 2021’s Senate Bill 380, which went into effect Jan. 1, 2022. The revised ELOA reduced the mandated waiting period between two requests for the life-ending medication from 15 days to 48 hours, among other changes. However, Michael Bien, co-founding partner of Rosen Bien Galvan & Grunfeld LLP, one of the plaintiffs’ attorneys, said the suit actually challenges the entire ELOA.
“I think it is correct (to say) that we’re motivated by the recent amendments, which reduced the guardrails on, and the safety of, the statute quite a bit,” Bien said. “We think the statute has problems even in its original version, but certainly the most recent amendments have made it far more dangerous and really brought about this lawsuit.”
The changes Bien and his clients are most concerned about include the aforementioned shortening of the period between requests from 15 days to 48 hours, and the removal of a requirement of a written attestation within 48 hours of a patient taking the life-ending medication. But Bien made it clear that he and the defendants object to the basic concept of the state offering ill Californians an option to commit suicide without any legal repercussions.
“Here we have a law that treats a certain group of people differently than everyone else,” Bien said.
He said the law has created confusion and fear among disabled patients. He framed the ELOA’s underlying message as: “‘You know, you’re right. Your life is worthless, and I’m going to help you kill yourself.’ … We think that reflects disability discrimination, and it comes from the same traditions of eugenics that California and the United States have had in the past, saying certain people shouldn’t reproduce, or shouldn’t marry. We sterilized thousands of people in our state institutions, jails and prisons, because we felt that they were less worthy of having children than other people. This was done by very well-intentioned doctors and lawyers. … I think this law is well-intentioned, but it actually reflects disability discrimination.”
According to the California Department of Public Health’s ELOA 2022 Data Report, released in July 2023, 3,349 patients used the law to voluntarily take their own lives from its inception through Dec. 31, 2022, while 5,168 people received prescriptions for the medication. In 2022, 1,270 individuals received prescriptions under the ELOA, and 853 people used them to take their own lives.
Of those 853 people, there is no evidence that any of them were disabled persons who were coerced into utilizing, or misinformed about, the ELOA. Bien and Kim Callinan, president and CEO of Compassion and Choices, an organization that supports medical-aid-in-dying laws, are in agreement on this fact.
“I do a lot of law in suing for injunctive relief,” Bien said. “You don’t have to wait for horrible things to happen to have a court intervene. So if you think there’s a tremendous hazard out there, a dangerous thing, then you can put a stop to it before a lot of deaths happen. You have to show that there’s harm.”
During a recent interview, Callinan insisted the lawsuit is based on unsubstantiated and invalid evidence.
“All of the data shows that in the rates for assisted-dying, there’s no heightened risk for the elderly, for women, for the uninsured, for people with low educational status or for people with disabilities,” Callinan said. “We have decades of data that demonstrate that the law works to protect vulnerable populations while, at the same time, it results in peace of mind for people who are already going to die. So if you’re looking at facts and evidence, there’s nothing to this case.”
On July 15, the San Francisco Chronicle published an opinion piece by Charles Entrekin, a disabled person living outside of San Francisco, about his personal disability and health challenges, his terminally ill status, and his strong disagreement with the lawsuit.
“At the end of my life,” Entrekin wrote, “I want to be able to face my death head-on. I don’t want to be out of my mind on pain medication, being kept artificially ‘alive’ in a hospital. If one of my illnesses becomes terminal, I want to be able to call on my wife, my children and other loved ones and say, ‘Come join me for a goodbye session.’ I want to be as present for that final moment as I am for every other day of my life.”
Bien said his client Lonnie VanHook feels differently.
“He has been suicidal at times, which is not an easy thing to admit and to go public about, but he is willing to do that, because he’s so frightened that this law puts him in a dangerous position,” Bien said. “He knows that he may become suicidal again, and he doesn’t want to go in and have a doctor say, ‘Look at you. You’re completely helpless. You can’t go to the bathroom, eat or do anything without help. And if you don’t have that help, you’ll die. You say you want to die, so I’ll help you. I’ll give you this medication.’ … The last time he went in feeling suicidal, the doctors were willing to let him die, and this was before California’s law was in effect. But he reached out to a doctor who he knew and cared about, and that doctor came and met with him, and listened to him. The doctor found out what was bothering him, and helped him solve the problems. Now, many years later, he’s still alive.”
Callinan, of Compassion and Choices, expressed a belief that Bien’s lawsuit is motivated by opinions, not data.
“I think the lawsuit is motivated by people with religious beliefs,” Callinan said, “and that it’s motivated by fear and concern that has not been supported by the data. … There’s no question that the California End of Life Option Act, as written, is entirely voluntary (on the part of) both the doctor and the patient. That negates the entire premise of this lawsuit.”
An article written by Ben Colburn and published by Great Britain’s National Institutes of Health on April 7, 2022, referenced a study which “summarized the data from all jurisdictions with assisted dying at that point: Belgium, Canada, Colombia, Luxembourg, the Netherlands, and five U.S. states. They concluded that, ‘In no jurisdiction was there evidence that vulnerable patients have been receiving euthanasia or physician‐assisted suicide at rates higher than in the general population.’ … The hypothesis that people with disabilities might be disproportionately impacted ‘does not seem to be borne out.’”
While Callinan believes the evidence is on the ELOA’s side, she expressed concern that the case could wind up in the hands of the U.S. Supreme Court.
“We have to take this lawsuit very seriously, and work to figure out how we make sure to lift up the fact that people in this country want autonomy over their end-of-life decision-making,” Callinan said. “That is what’s at stake here. It’s people’s ability to have decision-making autonomy over the final chapter of their life, and how they die.
“One reason we’re bringing the suit now is that we think the 2022 amendments are going to make (the number of patients accessing the ELOA) far more common, and we’re going to have many, many more problems.”
Michael Bien, one of the plaintiffs’ attorneys
“Fundamentally, it is our responsibility as a country to bring greater humanity at life’s end, and this lawsuit puts that at risk. The opposition has made it very clear that, fundamentally, what they seek is to invalidate medical aid-in-dying laws across the country, so they’ve been looking for ways to do that. I think there is a very real risk that this case could end up in the Supreme Court, but we are years away from that. There are lots of steps and maneuvers between now and then. But we’re certainly fighting back against this (lawsuit), recognizing that it is our duty to recognize and support (the fact) that people fundamentally want the option to make decisions about their medical care when it comes to the end of life.”
Bien said his main concern is that the number of patients applying to utilize the ELOA will increase rapidly due to the SB380 reduction of the 15-day waiting period to 48 hours.
“One reason we’re bringing the suit now is that we think the 2022 amendments are going to make (the number of patients accessing the ELOA) far more common, and we’re going to have many, many more problems,” Bien said. “Right now, it’s just barely getting rolling, if you look at their statistics. But every year, (the number) is going up—and now with the 48 hours, it’s going to go much, much higher.”
That seems to be the case: On Aug. 9, Angela Schultz, the California state manager for Compassion and Choices, said in an email that there was a 47% increase in prescriptions written in 2022, the first year with the shorter waiting period.
The subject of medical-aid-in-dying laws is a complex and polarizing issue that engenders strong opinions on both “pro” and “con” sides. This fact is not lost on Bien.
“There are people who are very upset that we are challenging this law,” Bien said. “One of the reasons I think (this law is) so popular is because people are at their wits’ end with end-of-life care in America. … Our medical system likes to treat and cure. Sometimes, neither the patient nor the doctor wants to talk about the unpleasant subject that the treatment isn’t working, and they keep doing treatments again and again. … I think that one of the answers to that is saying, ‘I want agency. I want control. This (law) will give me control.’ So I’ve found that’s why people like this and want this. But I just think that this law is not the solution to the problem, either.”
Full disclosure: Kevin Fitzgerald’s mother-in-law used the End of Life Option Act in 2016.
There can only be two groups opposed to personal agency as to when to end life: those who fear a (Christian) god and those who have never experienced an extended period of 24/7 agony and/or terror, with no relief ever in sight. And both of those groups then become torturers. Is that Christian? The Bible says God gave us life. It does not say we have no rights thereafter. And those selfsame persons who would impose torture on others hypocritically would be most willing to murder pedophiles and whoever fits their worldview. Well, I know many who live in 24/7 pain with no hope of its mitigation. They have no dependents who will suffer their loss. They will never write a great book or invent a cure for cancer. These people want to leave with some dignity, not the possibility that a poorly aimed gun leaves them quadriplegic instead of deceased. How about remembering compassion?
After seeing both of my parents succumb to illnesses that incapacitated them at the end of their lives in Texas, I find comfort in California’s law that would potentially spare me the same indignities at the end of my life. That should be my choice, no one else’s. Although I disagree with the religious right’s stand on abortion, I can at least understand their logic that the embryo is, in their understanding, a being without a voice. That logic is inapplicable here, and according to this article, the facts don’t support an argument that the disabled are victimized by this law. This controversy reminds me of that bumper sticker “Against Abortion? Don’t Have One!”