Lesley McClurg: From KQED, welcome to Forum. I’m Lesley McClurg, in today for Mina Kim.
Terminally ill patients in California received the right to end their own lives on their own terms about a decade ago. And on paper, it’s pretty straightforward: you fill out the forms, you find a few doctors to sign off, you make a plan. But a friend of mine recently shared her family’s story. Her mom had done everything right — the lengthy paperwork was complete, the doctors had signed off. But when it was actually time, when her mom was really sick towards the end, her children didn’t let her take the medication because they weren’t ready to let go. And so her mom spent her final days suffering in a way she had specifically tried to avoid.
It’s obviously a really complicated decision to navigate, so let’s talk about the nuances. We’re joined by Paula Span, adjunct professor at Columbia University Graduate School of Journalism. She also writes The New Old Age column for The New York Times. Welcome.
Paula Span: Thank you. Good to be here.
Lesley McClurg: And Dr. Lonny Shavelson is director of education for the Academy of Aid in Dying Medicine, and a medical doctor who has provided aid-in-dying care for about the last seven years. Welcome, Dr. Shavelson.
Dr. Lonny Shavelson: Thanks so much for having me.
Lesley McClurg: I imagine each of you has a story that illustrates this landscape. Paula, you first — is there a patient story you’d like to share, maybe something more positive than the one I mentioned?
Paula Span: Well, the one you shared was horrifying. Recently, I’ve been talking to advocates in New York state, which just very recently — the governor announced she would sign the bill after ten long years of people working to pass it. It will take effect in August. One advocate I spoke with yesterday told me how her husband had glioblastoma, a very aggressive form of brain cancer, and begged her to shoot him. He said, “Put me out of my misery.” He was a hunter with guns locked in a safe in the house, but he was so disabled he couldn’t even turn over in bed. He could not take his own life, and she could not do it without fear of prosecution — in her area of upstate New York, a woman had been imprisoned for a so-called mercy killing. So although she had supported aid in dying on principle for years, she also had this deeply personal motive: hoping that she and others in New York state would not have to suffer the way he did.
Lesley McClurg: Lonny, what about you — a story to share?
Dr. Lonny Shavelson: First, Paula, I’m so sorry to hear that story. Out of respect for my patients’ privacy, I’ll paint a more generic picture, if I may. I should also note that I’m not an advocate in the way Paula described — I’ve never lobbied a legislator in New York or any other state about passing laws. I simply believe that when the public, through their legislators, has decided they want the option to consider aid in dying, they deserve the best care possible, based on evidence-based practices we’ve been developing at the Academy.
That said, when a patient comes to me and says, “I want medical aid in dying — I have a terminal prognosis, I know I’ll be dead in a few months” — what I try to do is reframe that conversation. Rather than treating it as a request for medical aid in dying, I say: let’s talk about the fact that you’re considering this as one of many options, because you don’t yet know how your death will unfold or what your journey toward it will look like.
There is going to be a lot to navigate as you’re dying. You may have pain, which can be palliated through hospice care at home. You may have nausea or vomiting. You may have family conflicts — one of which, Lesley, you mentioned at the top. So as we move along that journey, medical aid in dying is one of the options we consider. But we’re not really “aid-in-dying doctors” — we’re end-of-life clinicians who accompany patients on their journey. And in fourteen jurisdictions now, that journey may include the option of medical aid in dying.
Lesley McClurg: Paula, how does it work in California? If a patient wants to go down that road — say, with a doctor like Dr. Shavelson — what do they have to do? How do they qualify?
Paula Span: They need to have a terminal illness that is incurable and irreversible, and they need to be within six months of death. Then — in California and virtually every other state where this is legal — they need to provide written and oral requests to two doctors. They need to have mental capacity, which pretty much eliminates people with advanced dementia from Alzheimer’s or Parkinson’s.
Most patients are already in hospice care but find they don’t want to wait for the natural end of their lives — either because of pain or other physical discomforts. In California, where anyone can look up this data on the state health department website, patients also cite reasons like loss of autonomy, inability to control their bodily functions, no longer being able to do things that made their lives enjoyable, and loss of dignity. These are quality-of-life reasons.
One other thing: this is not covered by insurance, so you have to be able to pay for both the medication and the doctors.
Lesley McClurg: And how much does that usually cost?
Paula Span: I’m told the drugs run about seven hundred dollars, and physicians charge whatever they charge. It’s not Medicare-covered. Most people who use this option in California — and nationally — are over sixty, and the largest group by diagnosis has cancer.
Lesley McClurg: And do you have to self-administer?
Paula Span: Yes. In every state where this is legal, you have to self-ingest. Either you have to be able to drink the liquid quickly, or in some cases doctors can help administer it rectally — but no one can inject you or give it to you intravenously. You have to be able to take it yourself. These are among the safeguards legislators have put in place over the years to try to prevent abuse.
Lesley McClurg: I think listeners might be familiar with the term “assisted suicide,” Dr. Shavelson. Is that an outdated term? Is medical aid in dying something different?
Dr. Lonny Shavelson: I think we need to look at reality. Suicide is a tragedy — when somebody takes their life during a time when they have the option to live on, that’s a suicide. The patients we work with, sadly, don’t have that option. They’re not choosing to die. In fact, I see my patients have tremendous resistance to the idea that they are going to die — but eventually they acknowledge it. And so patients who have no choice about whether they will die are choosing the way they die, not whether they will die. In a suicide, there is the option to live on. Those are very important to distinguish.
“Suicide” is also a deeply pejorative term. It carries stigma, it is tragic and sad, and we try to save patients from it. Whereas if somebody is two to three weeks from an inevitable death, that’s not a suicide. That’s a choice about the timing of their death.
Lesley McClurg: So is “assisted suicide” a term we should stop using?
Dr. Lonny Shavelson: I think so.
Lesley McClurg: And the decision to pursue aid in dying — it has to come from the patient themselves. Paula, can a conservator, a caretaker, anyone else make this decision? People nearing the end might not have the mental capacity.
Paula Span: No. As the laws now stand, no one else can make this decision for you — which is precisely why mental capacity is required. You have to be able to say, “I’m making this of my own free will.” Initially, regulators worried about things like family members pressuring someone to say they want to die in order to access an estate, or other nefarious motives. But there really has been no credible evidence of that in the states where this is legal. Oregon has had this law for thirty years, Washington for about eighteen, and California for ten. No credible evidence of widespread abuse.
In fact, after all the drama around passage of these laws — the headlines, the passionate speeches, the intense emotion — the number of people who actually use them to end their lives is tiny. Less than one percent in almost every state. In California, the most recent data puts it at a third of one percent. There’s an interesting disconnect: strong public support for these laws, as polls consistently show, but very few people actually exercising the option. It looks as though people genuinely feel that others should have this option, even if they don’t want to exercise it themselves.
Dr. Lonny Shavelson: You made some really excellent points — including about coercion, and the lack of evidence for it. But I’d point out that you opened the show with an example of family coercion going in the opposite direction. The laws were, I think, very well written to prevent families from pressuring patients into aid in dying for financial gain or other reasons — and you’re right that there’s no real evidence of that happening. But I have heard many stories of families coercing patients not to pursue aid in dying. The example you gave at the top is one. In my own practice, I had a patient who wanted to speak with me about considering medical aid in dying, and her family took away her phone to prevent that conversation. I consider that elder abuse — not just coercion, but actual elder abuse.
On the point about low numbers: you’re absolutely correct, but I’d interpret it a little differently. There’s a study in California showing that only twenty-five percent of Californians are even aware the law exists. That, I believe, is a major reason so few people are using it.
Lesley McClurg: We’ll continue that conversation right after this break. Stay with us.
