Should California’s right-to-die law expand to include people with dementia? One legislator wants to consider it

California is one of only a handful of states that allows what’s called medical aid in dying, the option for people diagnosed with a terminal illness — and who meet a tight set of criteria — to end their lives with doctor-prescribed drugs.

But should the nearly decade-old law be expanded to include more people, particularly someone who has been diagnosed with Alzheimer’s disease or other forms of dementia?

That’s the conversation Sen. Catherine Blakespear, D-Encinitas, plans to have in 2025.

California’s law, called the End of Life Option Act, allows for an adult California resident who is diagnosed with a terminal illness that is expected to result in death within six months to request an aid-in-dying drug from a physician that will be self-administered.

Since the law went into effect in mid-2016, 6,516 people were written prescriptions for these drugs and 4,287 (65.8%) have taken them, as of the state’s latest data report, issued for 2023. Of those who took the drugs, 91.2% were receiving hospice and/or palliative care, according to the state.

California law mandates that a request for an aid-in-dying drug must be made by the diagnosed individual — not through a parent, advanced health care directive, conservator, power of attorney or other legally recognized health care decision-maker.

The person requesting the aid must have the capacity to make their own medical decisions and not have impaired judgment.

But Blakespear, an attorney who has worked with estate planning, said she’s heard from people “who say some version of, ‘I don’t want to leave this life forgetting those I love.’”

“When you think about it, it’s so powerful,” she added. “To think your mind becomes so dim that you don’t remember any of the things or people you love. People want to have their own exit on their own terms before they get to that state.”

But there are obvious ethical questions and hurdles that come with expanding to include dementia patients — especially if diagnosed in a later stage.

At what point can someone no longer make that decision for their end-of-life care? What would happen if they would later decide they didn’t want to take the drug? Could they make that decision?

Those questions are part of why Blakespear’s sweeping legislation this past session to expand the End of Life Option Act failed — and even saw opposition from groups that support medical aid in dying practices.

Her bill would have replaced the “terminal disease” language of the law with “grievous and irremediable medical condition,” including dementia.

It also would have allowed someone to self-administer an intravenous injection rather than take a pill, as is now the only method.

Blakespear’s bill was so controversial it didn’t even get a hearing.

This legislative session, she’s trying a different approach: Blakespear is convening a stakeholder group to explore possible options of expanding the law with Alzheimer’s groups, medical experts and ethicists, organizations that already advocate for medical aid in dying, health care systems and people whose loved ones who have experience with dementia.

She recently held a town hall that had more than 700 people RSVP to attend either in person or virtually. Attendees’ questions, Blakespear said, ran the gamut from technical to philosophical.

“It’s a top issue for a lot of people,” said Blakespear, who represents southern Orange County communities. “It’s medical autonomy for them to say, ‘I want to choose how to leave.’”

“We have a lot of things already that intervene to keep people alive or documents that manage things under certain medical circumstances,” she said. “Are we striking the right balance? As we have an aging population and people are living so much longer and with terminal conditions, just being really thoughtful and allowing people more choices is something I think is important.”

Still, groups that already have a moral or religious opposition to medical aid in dying are looking warily at Blakespear’s proposal.

Greg Burt, the vice president of the California Family Council, a religious group that opposes abortion and same-sex marriage, said he worries expanding the law creates a slippery slope.

“Once you get people over the moral hurdle of being comfortable with killing folks in the name of compassion, it just expands and expands so we’re more and more comfortable with killing more and more people,” said Burt.

His organization views the law as “letting doctors kill people on purpose, and that’s murder.”

“Even if you do it for a good cause, if you’re trying to eliminate suffering, but you’re trying to eliminate suffering by killing a human being,” Burt said. “It’s not about letting people decide when to end their life; this is about letting other people who are medical professionals, licensed medical professionals, kill you.”

California’s law allows a health care professional to opt out of participating “for reasons of conscience, morality, or ethics but must transfer the person’s medical record upon request.

California’s law was propelled in part by the activism of UC Irvine alumna Brittany Maynard, who, at just 29 years old, was diagnosed with terminal brain cancer and given a prognosis of just six months to live.

She didn’t want to die, she told the Orange County Register in an interview some 10 years ago, but she had extensively researched her diagnosis and knew “it was going to be very painful and potentially prolonged.” So Maynard moved to Oregon — then, it was just one of a few states that had legalized medical aid in dying — and picked a date.

She died on Nov. 1, 2014. But not before detailing her journey and decision in viral videos.

Her mother, Debbie Ziegler, pushed for California to pass its End of Life Option Act.

Now, 10 states and Washington, D.C., have legalized medical aid in dying.