Should dementia and other patients be able to choose death?

My grandfather would wipe down the walls of our kitchen — a flashback to his busboy days in New York after arriving from Italy in 1920 — then suddenly rocket from past to present. He’d stare in horror at the rag in his hands, then at us. His face would collapse. He’d cry.

Alzheimer’s is a brain disorder known to slowly destroy memory, thinking skills and, eventually, one’s ability to carry out the simplest tasks. Now, though, a simple blood test to help diagnose Alzheimer’s has been approved by the U.S. Food and Drug Administration.

What would you do if, today, of sound mind and body, you learned that amyloid plaques were circulating in your body — indicating you’re likely to descend into that tragic fog, but probably not for many years?

Many, many readers I’ve spoken with since my dad died in March have indicated, almost fervently, that they’d want the option to die with dignity before their memory was completely destroyed, before their loved ones had to endure the agony of watching them cognitively, but not physically, disappear.

That’s currently not legal in California. Access to medical-aid-in-dying drugs (MAID) is only available to patients with terminal diagnoses and six months or less to live. Alzheimer’s and dementia of all kinds, as well as slow-moving but debilitating and painful diseases like multiple sclerosis, ALS and Parkinson’s, take years to exact their vicious tolls, and thus do not make the compassionate cut.

Should they?

These are not idle philosophical questions. Last year, Senate Bill 1196 would have expanded access to MAID to people with “grievous and irremediable medical conditions,” launching California into the 21st century alongside Canada, the Netherlands, Belgium and Luxembourg.

In those nations, MAID is available to a wider universe of pained people, not just those with fewer than six months to live. The bill would have included a dementia diagnosis as a “grievous and irremediable medical condition,” with MAID as an option if doctors determined the patient had the mental capacity to make that decision.

The idea freaked many folks out. The bill died. But the smart money, we hope, is on its resurrection in the not-so-terribly-distant future, as the “silver tsunami” grows ever larger. Populations are aging up in most advanced economies at a rate never before seen in human history. As that happens, cases of Alzheimer’s and dementia are skyrocketing.

“California is on the cusp of an unprecedented demographic shift, with projections indicating a dramatic increase in the older adult population by 2040,” the Public Policy Institute of California said in January. To wit:

• The number of folks 65 and older will expand by 59%,

• While those aged 20 to 64 (working age) will hold steady,

• And the number of kids (0–17) will plunge by 24%.

Folks like me — and the very many people I’ve heard from about this — will be part of the tsunami, and we will demand options.

“The whole business of being able to die without suffering too much, it just seems so important to people while they’re still healthy, to know that at the end it’s not going to be some horror show,” said retired psychiatrist Dr. Jeff Levine. “That has a great impact on people’s mental health in the here and now.”

Levine was one of the pioneers, charting how to implement California’s End of Life Option Act after it passed nearly a decade ago. He knows the tragic toll the law’s current narrowness can exact.

Early on, Levine heard from a woman with advanced Parkinson’s disease who was in misery and wanted MAID. But it wasn’t clear to Levine that she would die within six months, so he had to tell her she wasn’t eligible.

A week later, Levine got a call from the San Diego Police Department. His name was found on a pad, on a bedside table, at the site of a murder-suicide. Clearly desperate, the man had killed his wife, then shot himself.

“That really shook me up,” Levine said. “Why should people have to do that?”

Slippery slope?

Critics, meanwhile, assert that MAID can be grossly abused and misused.

When Canada recently expanded MAID to those suffering as well as those actively dying, opponents feared that the poor, marginalized, disabled and mentally ill would become its primary victims. Death, after all, is a lot cheaper than treatment.

A riveting piece in the New York Times magazine chronicled the quest for death of Paula, a Canadian woman whose suffering was acute, but who had no terminal illness. A psychiatrist argued that this is not what medicine is about, and that it’s not “assistance in dying” if the patient isn’t actually dying. “If you want to allow people to end their lives when they want to, then put suicide kits in hardware stores, right?” the psychiatrist told the Times.

Canada’s law is so broad it gives medical ethicists great pause. Its premise “is that the patient is the sole person who can decide whether additional treatments could be useful or viable alternatives to try,” said a paper in the Canadian Journal of Public Health.

“This emphasis on the absolute right of patients to decide to die rather than trying alternative means of reducing suffering may reflect an individualistic ethic in which people are considered to be free to make decisions about their well-being, even when a knowledgeable professional believes that the decisions are not in their best interest.”

And in 2027, Canada is slated to allow mental illness as a sole underlying medical condition to be eligible for MAID.

All this makes bioethicist Arthur Caplan uncomfortable.

Caplan, founding head of the Division of Medical Ethics at NYU Grossman School of Medicine, contracted paralytic polio as a child in 1957. He is disabled, with post-polio syndrome and nerve damage to his spinal cord. “If abuse were likely,” he wrote in an op-ed for Newsday, “I would be first in line to object to legalization.”

And object he did, back when Oregon became the first state to adopt MAID almost 30 years ago. He feared the potential harms of rushing poor, minority and disabled people to expedient, unwanted deaths. He pored annually over statistics tracking its use. Talked to journalists looking for abuses.

And, eventually, he changed his mind.

“The people I was worried about weren’t dying,” he said. That’s because guardrails were in place and they were working: MAID patients had to be mentally competent, terminally ill people who chose to end their lives after a reasonable waiting period by voluntarily self-administering the lethal medications.

“The evidence for opposition just did not stack up,” said Caplan. “And another fact emerged: Even when people requested lethal medication, about a third weren’t taking it. It was a parachute. It let them live. In a weird way, the law was somewhat like suicide prevention. I didn’t expect that.”

Canada’s new approach, however, pretty much obliterates the guardrails.

Before ethically offering MAID to people without terminal diagnoses — those who are depressed, in great pain, suffering — you’d have to have real confidence that they had accessed a medical system that did everything, really everything, in its power to help. Even though Canada has universal health care, that’s not clearly the case. And in the U.S., where millions are uninsured and millions more soon will be, it’s definitely not the case.

“Say someone just got divorced, lost their job, went broke, lost a child, is depressed and doesn’t want to live anymore,” Caplan mused. “These are problems with living. Should medicine respond to them with lethal drugs?”

The Netherlands strikes what may be a much more acceptable middle ground. There, physicians and patients must agree that all potentially effective treatments have been tried, to no avail, before MAID can be approved. It’s a small country, doctors tend to truly know their patients, and can make a much more informed judgment, Caplan said.

• In the Netherlands in 2023, there were 9,068 deaths under the MAID law, according to its data report.

• Patients with dementia, who were still occasionally competent, comprised 328 of them.

• Eight dementia patients — who were no longer competent, but who had advanced directives for MAID — received MAID as well.

• 605 had neurological disorders, and 138 had psychiatric disorders.

Caplan wants New York’s governor to sign the traditional-guardrails MAID bill currently on her desk. Might advanced directives ever be enough in the U.S. for Alzheimer’s and dementia patients to access MAID? Possibly, Caplan said — but not just yet.

Two tracks

Canada’s MAID law started out like California’s, but was expanded in the wake of legal action. So who is using MAID now?

• The overwhelming majority of Canadian MAID patients were, indeed, actively dying, according to the latest data. They’re referred to as “Track 1” patients, and 96% of MAID requests came from them — a total of 14,721.

• Patients who were suffering, but not facing imminent death, comprised just 4% of MAID patients — a total of 622. These are referred to as “Track 2” patients.

• Dementia was the medical condition listed for 81 of the Track 1 patients, and 25 of the Track 2 patients.

“MAID involves a number of competing interests and values,” the Health Canada report said. “On the one hand is the autonomy of individuals to make decisions about their health care, including end-of-life care; on the other is the protection of individuals who may be vulnerable.”

Nearly 32% of people receiving MAID under Track 2 lived with a serious and incurable illness, disease or disability for more than 10 years, it found. Neurological conditions and other conditions  — such as diabetes, frailty, autoimmune issues and chronic pain — were the most commonly cited underlying medical conditions. And while Track 2 patients comprised just 4% of MAID cases, they represented 27% of rejected requests.

The task of assessing a Track 2 request weighs heavily on providers. A study published in 2023 found that they had “many challenges… including assessing individuals with concurrent mental illnesses, being uncertain that patients had been offered appropriate treatments prior to seeking MAID and being unsure whether patients had seriously considered available treatments,” it said.

“Many providers experienced moral distress in attempting to balance patients’ rights with what might be in patients’ best interests. This is different from experiences providers have had with patients making Track 1 requests, as most of these patients have end-stage malignancy or organ failure and seldom have unmet health care needs. This information could be used to enhance education and support for clinicians as they help patients with track 2 requests access their right to peaceful deaths.”

Overall, though, MAID is far and away more common in Canada than it is here in California. Though we’re about the same population-wise (40 million), California’s death with dignity option was exercised by only 884 people in 2023, while more than 15,300 Canadians did the same.

“That number in California makes you concerned,” bioethicist Caplan said. “Why is it so low?”

Baby steps

That’s partly because, despite the fact that it has existed for nearly a decade, most Californians simply don’t know about MAID, studies have found. And many who do know it exists don’t understand who’s eligible or how to access it (we’ll give you resources at the end of this story).

In Canada, though, MAID is a much more routine part of death management discussed by doctors and patients.

“We should be demanding that everyone, wherever they are, be informed of their options,” Caplan said.

People are clearly hungry for information. State Sen. Catherine Blakespear, D-Encinitas, held a forum on MAID in December titled “Chart your own Exit.” It was swamped with some 700 people — and broadcast online to accommodate them all.

“There’s a disconnect between what the populace wants, and the context of lawmaking,” said Blakespear, who is trying to get a simple bill eliminating the sunset date for California’s law — currently 2031 — through the Legislature. “Many lawmakers don’t know about this, or haven’t deeply considered it. That needs to happen.”

Janet Hager, a founding member of A Better Exit, a nonprofit devoted to broadening California’s law to include those suffering from progressive, incurable diseases, would agree. The options for those patients now are few, Hager said — such as going to another country (an expensive and potentially alienating proposition); voluntarily stopping eating and drinking (an arduous and miserable process that can take weeks to achieve its aim); and, all too frequently, violent suicide, often by firearms.

One of my dearest friends lost a parent that way. The trauma for survivors never, ever goes away.

“We need a carveout in the law for all degenerative diseases,” Hager said. She’s not sure, however, it will happen in her lifetime.

Change, Caplan predicts, will come — but in baby steps. Advance directives and trusted surrogates could eventually play a role, but the guardrail of terminal illness seems a wise one.

“The answer to the slippery slope,” he said, “is to put in stairs.”

To find MAID help, see socalendoflifeoptions.com, endoflifechoicesca.org, and/or aadm.org.