Opinion: Few Californians Choose Medical Aid in Dying. Here’s What We Can Learn from Canada

California and Canada have about the same number of people – 39 million in California, 35 million in Canada. Both jurisdictions legalized medical aid in dying in 2016. Both have similar medical systems – many older people are entitled to mostly free medical care, physicians are free to choose their patients and the services they provide. Yet in 2022, 13,241 Canadians took advantage of medical aid in dying, while only 853 Californians did so. Why the big difference?

First, it’s helpful to understand what medical aid in dying is. The practice is sometimes referred to as physician-assisted suicide, but California law specifies that the term cannot be used in this context. As an example, let’s say you are diagnosed with cancer. You try everything possible to find a cure, but nothing works. You are told you have less than six months to live and that the remaining time may be filled with increasing pain and loss of dignity for you, and prolonged suffering for your family as the cancer drains away your life.

Medical aid in dying enables you – not the disease – to control the time, the place and the circumstances of your death. Since our legislature passed the End of Life Option Act nine years ago, every Californian has the legal right to control their inevitable death from diseases like cancer.

As someone in my late 70s and as a volunteer with End of Life Choices California, I was puzzled why so few of my friends and acquaintances knew about this legal right. This was despite the fact that most of them said they would want this option if they faced a protracted death from a disease like cancer. I was even more puzzled when I learned about the 15-fold disparity between California and Canada.

To help me find answers, I enlisted the help of a colleague from the University of British Columbia’s Medical School. Together we conducted a study that was recently published in Mortality, a peer-reviewed scientific journal. In summary, we found that none of the more common assumptions explained the disparity. Of note:

• 75 percent of both Californians and Canadians believe medical aid in dying is morally acceptable.
• 45 percent of both Californians and Canadians said they would be willing to consider medical aid in dying if they had a disease like cancer.
• The mode of delivering medical aid in dying—drinking a lethal drug in California or having a practitioner inject it in Canada—did not change people’s opinions.
• The laws governing medical aid in dying are very similar and equally restrictive (except for about 3 percent of Canadian recipients who qualify under different rules).

We found two factors that may explain the 15-fold disparity between California and Canada.

First, only 25 percent of Californians aged 60 and over even know that medical aid in dying is their legal right, compared to 67 percent of all older Canadians.

Second, and possibly contributing to the first, is a major difference in the way Californian and Canadian health care institutions inform the public about medical aid in dying.

In Canada, most health care institutions have a list of all their medical services on their websites; medical aid in dying is included in those lists, equally as prominent as all other medical services starting with “M.” Clicking on that link takes the viewer to a page describing the service in detail and providing the phone and email contacts to a care coordination team.

This is not so in California. None of our large health care institutions include medical aid in dying in their readily accessible lists of available services. Clicking on an associated service such as “Hospice” or “Palliative Care” may take the viewer to a page describing a number of end-of-life services such as advanced illness management and home infusion therapy, but medical aid in dying never seems to be included as an option. However, if you already know about medical aid in dying and run a Google search for the institution’s name plus “medical aid in dying,” it will usually turn up a page titled “End of Life Option Act” that describes the option and may or may not include a contact email. It appears the institutions are reluctant to mention medical aid in dying, even though they are willing to describe other services like hospice that are available only to people equally close to death.

There is evidence that physicians are also reluctant to mention medical aid in dying when discussing options with a terminally ill patient for fear of upsetting the patient. However, a recent study reported that over 90 percent of advanced cancer patients did not find such a discussion upsetting, even if they did not want medical aid in dying for themselves. More importantly, 80 percent of these people stated that considering this option with their physician was important to them.

This leaves us with the question: Are thousands of Californians each year missing out on a legal right to control their suffering or at least to make a fully informed choice? To better inform Californians, we must encourage our state health department and our health care institutions to have information readily available on their websites about how to access medical aid in dying. Likewise, we need providers to respect patient autonomy by ensuring we are fully informed about all the legally approved end-of-life choices, including medical aid in dying.

Adrian Byram is a board director for End of Life Choices California, a nonprofit organization that provides Californians with information and support to navigate their end-of-life options.