A woman with ALS says California's aid-in-dying law discriminates against those who need help ingesting life-ending medication.
by Maria Dinzeo
Sandra Morris, a California woman in the final stages of amyotrophic lateral sclerosis (ALS), wants the option of ending her life in the future. But the possibility that she’ll be too incapacitated to take her own life means she may need a doctor’s help when the time comes. She says no doctor will help her ingest aid-in-dying medication because they could be criminally prosecuted.
California’s End of Life Option Act, signed into law in 2016, allows a terminally ill adult to request an end-of-life prescription medication from a doctor. But physicians are not allowed to step in and help terminally ill patients too disabled or weak to administer the drugs themselves.
“The legislation was polarizing, eliciting passionate responses both in support and opposition from religious groups, medical practitioners, and activists — including those advocating for disability rights. In the face of this controversy, policymakers took pains to craft a statutory framework that would provide choice and peace to many, while acknowledging the weighty moral issues involved and protecting against abuse and coercion,” U.S. District Judge Vince Chhabria wrote of the ardent debate behind the law, which ended up being struck down as unconstitutional in state court in 2018 and reinstated by an appellate court a month later. An amended version of the law was enacted in 2021, and the case was dismissed.
The End of Life Option Act limits who is eligible for such medications and how they can take them. The patient must have an “incurable and irreversible” disease that is expected to result in death within six months, and physicians may only prescribe the medications to those who have the physical and mental capacity to self-administer.
“One of the most difficult questions facing the drafters of the End of Life Option Act was how to provide people with the option of a peaceful death without opening the door to abuse or coercion,” Chhabria wrote. “The Legislature thus included numerous safeguards in the statute to ensure that, at every stage of the process, a person demonstrates their voluntary consent.”
Morris, joined by her doctor Lonny Shavelson and other physicians, sued to challenge the provision barring patients from receiving help with ingesting aid-in-dying drugs when they are physically unable to do so on their own.
“It feels so cruel to me that because of the way the EOLOA is written, that I will have to tell my children that I have to leave them earlier while I still have the use of my hands, and while I can still swallow the medication — rather than having the assistance I need with ingestion so I can stay with them a few extra weeks, or days, or hours,” Morris said in a declaration. “I should not be asked to die early just because I’m severely physically disabled.”
At a hearing on the matter in April, disability rights attorney Cat Cabalo said disallowing this carveout is a violation of the American With Disabilities Act, because it disallows physically disabled persons from participating in a legally sanctioned activity available to their able-bodied peers.
But Chhabria ruled the case could not proceed on the theory that it violates the ADA because the accommodation they seek would cross the boundary created by the End of Life Option Act, “from the ability to end your own life to the ability to have someone else end it for you.”
Chhabria wrote, “Such an accommodation would ‘compromise[] the essential nature of the act, and would therefore fundamentally alter the program.’”
The judge said the law’s self-administration requirement is the “final safeguard” to ensure the act remains voluntary.
“A person seeking to end their life pursuant to the act can opt out at any point — after requesting or receiving the prescription, after the drugs are in their hand, after the feeding tube has been installed, after saying goodbye,” he wrote. “The accommodation that the plaintiffs seek would significantly undermine these protections by opening a window during which there would be no way of knowing whether the patient had changed their mind.”
After the California Attorney General’s office moved to dismiss the case, patients and physicians asked Chhabria to narrow the requested accommodation to allow doctors to help a patient if they begin to administer the drug but lose the ability to complete the process. But Chhabria found the proposal that a patient communicate their desire to continue by blinking at the physician would again fundamentally change the law’s purpose. “Permitting a physician to assist a patient based solely on that patient’s communication would fundamentally alter the End of Life Option Act by legalizing the killing of others — something the act declines to do,” he wrote.
He also found it inappropriate to consider whether a physician could intervene if a patient begins the process on their own but cannot complete the act; for example, if they start to depress a plunger but lose the strength to finish. Chhabria said this is an entirely new theory of discrimination that would apply to “a tiny sliver” of the proposed class. “It is almost as if the plaintiffs have proposed a new lawsuit in response to the motion to dismiss,” he wrote, adding that it would be very difficult to articulate a class full of patients who find themselves in that situation.
Chhabria gave the plaintiffs another shot at amending their case, but said he was skeptical the effort would be worthwhile.
The state attorney general’s office said it was reviewing the decision. Cabalo, the disability rights attorney, did not respond to requests for comment on Wednesday. Shavelson said he could not immediately comment.
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