By Katherine Ellison,
John Rehm’s death changed Diane Rehm’s life.
Ten years after John was diagnosed with Parkinson’s disease, he couldn’t stand, walk, eat or go to the toilet by himself. Outraged because the law forbade his doctor to help hasten his death, he resolved to stop eating and drinking.
Diane, the celebrated NPR talk show host and John’s wife of 54 years, kept vigil for the next 10 days. Just after 2 a.m. on June 23, 2014 — a few hours before John died — she took out her iPad and typed the first sentences of a passionate argument for medical aid in dying.
“In most of America, lawmakers and the church are deciding this issue for other people,” she says. “People they’ve never met. People whose suffering they have no way of understanding.”
In 2016, Diane retired from NPR station WAMU after working there for more than 30 years. Since then, she has championed what she and other advocates call “death with dignity.” On Wednesday, PBS will broadcast her new documentary, “When My Time Comes.”
The one-hour program and a similarly titled book published last year describe the death of her husband, a former lawyer for the Kennedy and Johnson administrations, and the perspectives of politicians, doctors and patients about the movement that has led to new laws in nine states and the District.
Diane remarried in 2017, at age 81, to retired Lutheran minister and therapist John Hagedorn. Since leaving WAMU, she has been producing a twice-weekly podcast and a monthly book club. She spoke to The Washington Post in an hour-long telephone conversation that has been edited for length and clarity.
Q: Why did your husband want to die?
A: It wasn’t so much that he was in pain. He said he had lost his sense of dignity. He was a very proud man, and he felt that if he continued to live he was going to lose even more dignity. He still had his sharp mind, and he knew exactly what he was doing and saying. Our daughter said, “Dad, we can keep you comfortable,” and he said, “Dammit, I don’t want comfort.”
I’ve since learned that pain is number 6 on the list of reasons why people want medical aid in dying. The loss of joy in life is number one. The morning after John had that conversation with his doctor, I remember walking in to see him and saying: “Sweetheart, you look wonderful! Your face is rosy and your eyes are sparkling!” He said: “I have begun the journey.”
Q: Do you worry that these laws allowing doctors to prescribe medications for the terminally ill so they can die peacefully could be a slippery slope toward making suicide more acceptable?
A: There’s a huge difference between medical aid in dying and assisted suicide. People who commit suicide want to die. In the film, I speak with a 37-year-old mother of two with breast cancer that had spread throughout her body. She said “If I had my druthers, I’d live until I’m 90. But I know I can’t, and I don’t want my 13-year-old son to see me suffer.” That’s the difference between medical aid in dying and suicide. One is a choice. The other is there is no choice; she knows she’s going to die and she wants to die peacefully and in a way that doesn’t leave her children with memories of her in agony.
Q: What limits, if any, protect people who might be pressured to end their lives early?
A: These laws are very specific, modeled on the first one, passed in Oregon in 1997. You must be within six months of death. You must be able to self-administer medication. You therefore cannot wait until your swallowing mechanism no longer operates and you also cannot wait until you can no longer say that you’re ready. In some states, you must be interviewed by a psychiatrist, alone, so that it’s clear that no one else is making this decision.
Q: What surprised you the most as you did your research?
A: What really shocks me is the fact that the Roman Catholic Church has been the most well-funded and outspoken opponent of medical aid in dying. A referendum in Massachusetts found some 70 percent of those polled said they were in favor. But then the church put $5 million into defeating that proposal.
Now, if your faith says to you, “I want God to decide when my life is going to end,” I’m in support of that. I’m an active Episcopalian myself.
If that’s what you want for yourself, I’m happy to support you along the way, and if you want everything medical aid can offer, then of course that’s what you should have. But I also believe that for people who’ve reached the end of a long, hard illness and are in their final six months before death, well, they should have a choice.
Q: What else do you think is preventing these laws from passing in more states?
A: Denial is a big problem. Talking about death is so taboo. You see me in the film standing in the church, asking how many people in the congregation plan not to die? Everybody is uncomfortable with the idea of death, so they don’t want to talk about it. But then what happens when your mother or father is dying and you haven’t spoken to them in advance? How are you to know what they want? Do they want to be hooked up to every possible machine at the end?
People also don’t know how and where the laws are changing. We now have medical aid in dying in Washington, D.C., but so many people do not know it. And 10 states are currently debating it, including New York and Connecticut. I am very hopeful this film will get more people talking about it. I also think covid has gotten people thinking more about how close death is for all of us.
As soon as the virus hit, I called my own physician and said I do not wish to go to a hospital if I come down with covid. I will not be put on a ventilator. She said “If that is your wish, I will make a note of it.” I switched doctors once we began making this film and I realized how few doctors are willing to help people who are ready to make up their minds.
Q: How did your bosses at NPR react to your outspokenness on such a controversial issue?
A: In 2016, there was a story about my advocacy in The Washington Post. I was planning then to do several dinners for Compassion & Choices, [ a U.S. nonprofit group working to improve patients’ rights]. NPR called and took me to task. Then 10 of the top executives at NPR came to WAMU and we sat in the conference room with my manager, and he was so worried I was going to stand up and say I quit if they told me I couldn’t do those dinners. I told them I was sorry but I wasn’t backing down. I wasn’t being paid to speak, but it was very important to me. Eventually they compromised and said do the three dinners you committed to do but if you speak out on this again on the air you will have to say you’re an advocate for medical aid in dying.
Q: Was this tension a factor in your decision to retire?
A: Absolutely not. Not at all. I was going to be 80 and I honestly feel that when those of us who’ve had such long and wonderful careers reach a certain point it’s no longer fair to just keep going because we have a big audience and people want us to keep going. There are young, talented people who ought to have a right to move into those chairs.
Q: Your documentary shows you with a young man videotaping you expressing your wishes for how you want to die. What are you telling him?
A: That’s my grandson Benjamin. He was 19 at the time. I’m telling him that should I somehow become an individual who experiences Alzheimer’s, I need you to tell me early on that you are seeing this. If that does happen, I will begin making my plans to end my life before I am no longer able to do so. Obviously, this is not allowed under any current Medical Aid in Dying laws around the country, so I will have to plan to take matters into my own hands.
When my time comes, I want all of my family with me: my husband, son, his wife, my daughter, her husband, their children and my dearest friends. I want us all to be sipping champagne and telling good stories about the times we’ve shared. And when the moment arrives, I want to go into my own bedroom with my children and my husband and I want to be able to go peacefully with the medications.
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