The End of Life Option Act was terribly controversial as it worked its way through the California Legislature. But since it became law in 2016, it has not led to the horror scenarios opponents had conjured, and newly released statistics suggest that it has enabled more than 1,200 terminally ill people to end their lives on their own terms with dignity and a minimum of pain and suffering.
In fact, the law — under which terminally ill people with six months or less to live may request drugs from a doctor to end their lives — has been so successful that it’s time to do the unthinkable by loosening and expanding it. That includes streamlining some unnecessary regulatory roadblocks and passing similar laws in the 41 states that currently don't have them.
And I’d go even beyond that. I believe that we should make more people eligible to participate in what’s come to be known as “aid in dying,” if they choose to. Alzheimer’s patients and others facing dementia seem like an obvious place to start, although policymakers also could consider people with certain degenerative diseases or those living in chronic pain, even if they aren’t within six months of death.
Even suggesting such a thing opens a fraught and contentious ethical debate. It will undoubtedly raise the wrath of the Catholic Church and others, who will call it a dangerous expansion of a law they never approved of in the first place.
But having seen both my mother and grandmother in the grips of Alzheimer’s disease, and having watched as their quality of life declined to zero in their final years, I believe this is necessary. My grandmother in particular had made it extremely clear, both before and after her diagnosis, that if she lost the ability to speak, read or remember — much less to feed herself or dress herself or go to the bathroom or recognize her family — she didn’t want to remain alive. Yet for years she lay in a bed in a nursing home in precisely the condition she had feared. We had no way to help her.
Ever since, I have supported the right of dementia patients to die if that is their choice.
Of course we’d need strong protections against abuse or coercion. But why consign people to lives they’d prefer not to live?
If expanding the California law sounds radical, remember that even the narrow version we now have faced fierce opposition. Opponents claimed aid-in-dying would lead to death for depressed, disabled and poor people.
But last week, the California Department of Public Health released statistics suggesting the law is being used appropriately: In 2019, 618 people received prescriptions and 405 used them. The median age was 76. Nearly 70% had cancer; many others had diseases like amyotrophic lateral sclerosis or Parkinson’s.
The original bill’s co-author, state Sen. Bill Monning (D-Carmel), says he knows of no complaints of abuse or misuse or tragic consequences during the law’s first four years.
The law is full of safeguards. People are eligible only if they have six months or less to live (as certified by two doctors). They must be deemed mentally capable and must ask for the drugs twice, putting 15 days between the requests. If they choose to take the drugs, they must do so themselves.
Some of the rules may be too tight. A 2018 Kaiser Permanente study suggested that one-third of those who request the end-of-life care option die before completing the process, partly because of the 15-day waiting period. Perhaps the waiting period can be eliminated, or waived in certain cases. States might also want to allow physician’s assistants or nurse practitioners to prescribe the drugs, to increase patient access.
Yet expanding the law to include Alzheimer’s patients and other dementia sufferers is not yet on the table in most places. Even many advocates of aid-in-dying oppose it, including Monning and Kim Callinan, president of the organization Compassion and Choices.
“One of the threshold qualifiers in our law was that the patient must be mentally competent and must be the decision maker,” says Monning. “Not a family member or a loved one or medical advisor. The conscious choice of the patient to me is so critical to the efficacy and morality of this bill.”
Callinan notes that many doctors might be unwilling to administer life-ending drugs to patients who are not competent to clearly state that it is their preference.
Still, these are problems that can and must be worked out over time.
Consider, for instance, a system in which people who have received an Alzheimer’s diagnosis or are worried about dementia could, while they’re still mentally capable, lay out their care choices for the future. “If I get to such-and-such a point,” they might write in an advance directive, “then I want drugs administered to me to end my life.” (Currently, Alzheimer’s patients can ask in advance to forgo medical treatment designed to keep them alive — but their wishes are not binding, and they can’t use aid-in-dying laws to actively end their lives.)
Surely this law, which has brought relief to so many, can be safely expanded to serve others who need its help.
People often behave as if anything that hastens death is morally unacceptable and that fighting to extend life is always preferable. But there are fates worse than death.