Earlier this month, new polling showed that nearly three out of four voters in Massachusetts support a bill that would allow terminally ill adults the option to be given life-ending medication. Should legislation advance in the State House, Massachusetts would join the 10 states and Washington, D.C. that have already legalized physician-assisted death.
One of those states is California, where the legislation passed and was signed by then-Gov. Jerry Brown in 2016. Health reporter April Dembosky of California’s KQED station covering the Bay Area joined GBH’s All Things Considered host Arun Rath to discuss the rollout of physician-assisted death in California. What follows is a lightly edited transcript.
Arun Rath: There are a few different terms and euphemisms for the process: medical aid in dying, physician-assisted suicide, the right to die, to name a few. You’ve written about these euphemisms. What is the evolution of it? Is it all about just moving away from the term "suicide"?
April Dembosky: It’s interesting. I covered the debates around this bill throughout the time that it was moving through the Legislature. And throughout that time, I was actually lobbied by people on both sides about what terms to use. At the time, in California, we started out referring to the practice as assisted suicide because that was the term that people knew and because this was the style that was recommended by the Associated Press.
But during that time, proponents really argued that that term was not accurate. They said, you know, suicide refers to someone who wants to die, whereas people who were seeking this kind of care wanted to live but were already dying, and the process was about hastening their death, not causing it.
At the same time, the terms that proponents were using tended to be jargony or, as you said, euphemistic. They were difficult to grasp. You know, especially back then — aid in dying, death with dignity — people didn't really understand exactly what those terms meant. What we ended up doing was we ended up trying to avoid using either side's preferred language. We would just try to put the law in context and say, this is a law that allows terminally ill people to take lethal medication to hasten their death.
I will say once the bill became law here, we did become a little bit more sympathetic to the proponents and started to veer away from using terms like assisted suicide, although I do believe that is still the official term used by the AP.
Rath: Tell us about how the process has worked as it’s been rolled out over the last several years.
Dembosky: The first thing to say is that since this became law, not a lot of people have actually taken advantage of it. In the last three years, our state data shows that less than 500 people a year will take these lethal medications to end their lives.
Rath: For a state the size of California, that’s not a lot of people.
Dembosky: It is .001% of the number of people who die in California every year. So it’s a very, very small number. Part of this is because a lot of people aren’t interested, or a lot of people don’t know about it. But especially in the earlier years, there was also an issue with being able to find a doctor who was willing and trained to provide this kind of service. So even people who didn't know about it and wanted to take advantage of it couldn't necessarily find someone to help them.
Our law in California was quite clear that this is optional, that no doctor has to do it if they have objections to it. So, for example, all of the Catholic systems in our state actually forbid their doctors from participating. But other large health care systems, like Kaiser Permanente and Sutter, started programs where they started to reach out to physicians to find out who was interested. And then they started to do training and education so that they would understand all the protocols and science around the medication.
We also had a nonprofit group that began a centralized referral system. It's called the American Clinicians Academy on Medical Aid in Dying. Patients can go to this website, fill out an intake form, and if they qualify, they'll be matched with a doctor near them who's willing to provide the service.
Rath: So overall, on the patient’s side, for people who do want to pursue that option, how difficult is it to go through legally?
Dembosky: It's interesting that you phrase it as difficult, because I think some of the early adopters, if you will, who did try to take advantage of this law made complaints that it was too difficult. I think if you were to ask some of the opponents of the bill, that was, by design, there was really fierce debate around this bill.
Most of the opposition came from disability rights advocates who feared that there would be coercion, that people who were living with disabilities might be pressured by their family members or even by doctors to give up on life-saving care that was perhaps expensive and choose this option to end their lives.
The people who were pushing the bill really listened to these concerns and worked a lot of safeguards into the bill. For example, two doctors have to verify that the person has a terminal illness and has six months or less to live. The patient has to request the medication three times before they can get it, and one of those times has to be in writing. And then there's also a waiting period of 15 days between the first two requests.
One of the early studies that was done around the practice actually found that close to a quarter of the people who wanted this medication were actually dying during that 15-day waiting period and were unable to have the deaths that they had hoped for.
Rath: Obviously, this being applied disproportionately to the disabled or to the elderly or to people who might be poorer or other kinds of disadvantaged communities is kind of a nightmare scenario that people who are opposed to these laws tended to lay out. How much are those other fears coming into play?
Dembosky: The data we have from California shows that these fears or assertions are not actually being borne out.
I would say from a demographic perspective, physician-assisted death or aid in dying has been largely a white enterprise. To date, 87% of people who have taken these medications in California are white.
Overwhelmingly, they are highly educated, having at least some college education, if not a college or a graduate degree.
The vast majority of people who take the medication take it for a terminal illness like cancer, so 70% of people who have taken it have some kind of cancer. After that, it's 11% that have a neurological disease like ALS or Parkinson's. And then after that, it's heart disease or respiratory disease.
We're also not seeing some of the fears around people with disabilities. So we don't know what percentage of people who have taken the drug have a non-terminal disability. But what we do know is that if they took the drug, it's most likely because they also had a terminal illness, most likely cancer.
Rath: I’m wondering if, on the other side, if those disparities reflect, say, people of color or people who are economically disadvantaged are not getting as much access to these services or maybe other aspects about why they’re not opting in?
Dembosky: The proponents of this practice would certainly argue that that is the case. They would say there hasn’t been enough outreach to let people know that this is available.
