Ep 97: The Right to Choose - Diane Rehm on Autonomy, Aging, and End-of-Life Dignity

Diane Rehm, the legendary 89-year-old NPR talk show host, discusses her passionate advocacy for medical aid in dying with BrainStorm host, Meryl Comer. Rehm’s view was shaped by her husband John's difficult death from Parkinson's disease and the experience transformed her into a fierce advocate for end-of-life autonomy. She's adamant that if diagnosed with serious illness or early signs of Alzheimer's, she would travel to Switzerland rather than undergo treatment or lose her cognitive capacity, declaring that legislators have "no right to control my decision as to when I die."

Despite confronting these weighty topics, Diane exemplifies what researchers call a "superager"—maintaining remarkable physical and cognitive health through decades of Pilates, a disciplined diet, active social engagement, and continued work. She also reflects on her storied broadcasting career, lamenting how modern media has become siloed and less committed to presenting multiple perspectives, while emphasizing her core philosophy that "a talk show should really be called a listening show"—valuing ordinary people's voices as much as those of distinguished leaders.

Transcript

Diane Rehm: 0:00

I do not believe that heroic means to keep someone alive for as long as possible. Why? And I know I'll offend many people by saying this, but if I am told tomorrow that I have a serious form of cancer, I will not take any medication. I will not take any infusions. I will not have chemotherapy or radiation therapy. I will go to Switzerland.

Meryl Comer: 0:46

This is Brainstorm and I'm Meryl Comer. Our guest today is Diane Reim, National Public Radio's influential host over a career spanning more than five decades. Her weekly show attracted nearly 3 million loyal and engaged listeners. Welcome, Diane. Thank you for joining us. Oh thank you. Diane, you were proud to share that you've turned 89. But missing from your farewell speech was the word retirement. What's that about?

Diane Rehm: 1:18

It's about the fact that I don't ever intend to retire. And I've always felt that work was part of being alive, no matter what kind of work that is or was. So I went from doing the Dailies broadcast to doing podcasts at a book club for WAMU NPR, and then when I left that, I began on Substack. So I am continuing on because I don't like not working.

Meryl Comer: 2:05

Diane, does this new global communications world of mobile streaming and podcast platforms excite or dismay you?

Diane Rehm: 2:14

Well, there are all kinds of reasons to be excited about it and because it offers the opportunity for so many people to be independent broadcasters and to say what they want to say. Now, whether what they want to say pleases everybody is yet another question. And I think there's a lot online that people are concerned about. There's a lot of, shall we say, fake news that's online, and there's a lot that's disturbing online. So with all the pluses, of course, there are bound to be minuses as there are in just about every other area of broadcast. The one thing that's really, really different online is that in some cases nobody is editing anything, and they're putting out material that could be frightening, that could be dangerous, that could be absolutely false, absolutely untrustworthy, and therefore a lot of negatives that go with the pluses.

Meryl Comer: 3:49

Reflecting on your decades in public radio, Diane, has the landscape of political and cultural discourse changed for the better or worse?

Diane Rehm: 3:59

We're now broadcasting and listening and watching in silos. We go to those places where we believe the truth, our truth, is being reflected. And that is indeed the problem that we are not hearing all sides. On my radio program, producers knew that every single day there had to be at least two sides represented on every issue. And there are always more than two sides. But in today's siloed broadcasting, news reporting, newspaper reporting, television reporting, we tend to go to the silo that agrees with our perspective rather than seeking out and seeking to understand all of the different perspectives that are out there that make up the national dialogue. The national dialogue is so much more complex and diverse than any one newspaper, any one dialogue, any one broadcast can bring us today because we are in these paths that we follow that reflect our own perspectives. And it's too bad.

Meryl Comer: 5:44

What is fascinating to me in all the years you've been on the air is that you've always made it a point to tell your audience that their voice was as important as the voice of the distinguished leaders whom you interviewed. Tell us why.

Diane Rehm: 5:59

You know, Merrill, I have always said that a talk show should really be called a listening show. Because I want and wanted to do more listening than talking. And I believe that the audience, the wonderful, extraordinary audience I had all over the world. And they called in so I could hear their voices. It wasn't as though I was just reading emails. I was hearing their voices. And in their voices I could hear the joy, the anger, the anxiety, the guilt, the concern. I mean, that's what comes through in the voice. And I do believe that people who rise to high positions tend to forget the importance of the single voice, the importance of the people in this world who maybe are doing quite well, others not so well, others truly suffering, but they all have a story, and they all have importance. We all are human beings sharing one planet. And if we do not respect each other's voices, it's gonna end. I mean, there's no two ways about it. Somebody is going to pull the ultimate trigger if we do not get off this they and us. And we are in that place right now.

Meryl Comer: 8:08

Diane, you've authored five books touching on personal and societal themes. Your memoirs reveal personal struggles with both depression and spasmodic dysphonia. Why are you willing to be so public with your pain?

Diane Rehm: 8:23

Because everybody has pain. Every single person I've ever met. No one is completely without pain of some kind. The spasmodic dysphonia which hit me shortly after my program went to a national audience from a local one. Who knows why it happened? But I had to do some delving into myself to understand all the possible reasons why I was dealing with such a problem. But everybody has a marriage, for example, that has some problems. No marriage is absolutely perfect. And that is why I wanted to write about marriage with my husband, my late husband, John Rain, which I did, and we toured the country talking to couples, to families. It was an extraordinary experience, Meryl, to be open enough that we could show that openness opened their hearts and their minds as well. So I think my life is not so unusual, but it was important for me. I was in therapy for about 30 years. And talking about things of importance in my life, I felt sharing what I learned could be of help to others.

Meryl Comer: 10:23

Diane, your memoir on my own reveals that very personal and painful detail of your husband's choice after years with Parkinson's disease to end his life by starvation. How did his decision reshape your own views about dignity at the end of life?

Diane Rehm: 10:41

You know, Merrill, even before John Rain got sick, before we knew he had Parkinson's, he and I had talked a lot about what we wanted at the end of our lives. I watched my mother as a young ten year old starting to get sick in and out of hospitals. Nobody would talk about it. My father wouldn't talk about it, my aunts wouldn't talk about it, my uncles wouldn't talk about it, and by no means would my mother talk about what was coming. And when she died when I was 19, and my father died 11 months later of a heart attack because he had a broken heart. So when John Reim and I reached an age where people began to die, and one in particular of ALS, I said to John Reim, I'm not gonna let that happen to me. When the time comes, I'm going to find a way to go. And he said, I feel exactly as you do. We will help each other. And that's what he thought he was going to get from his doctor in the nursing home away out. He had less than six months to live. And DC, we were in Maryland at the time. Even DC did not have medical aid in dying at the time, nor does Maryland. So John said I'm going to starve myself. And the doctor said, I hope you won't do that, but I respect your decision. And John said, Well I'd be in pain. And the doctor said, No, I promise you won't be in pain. It took ten days for John Reed to die. I have been fighting for supporting and testifying for medical aid in dying ever since I participated by narrating and interviewing in a film called When My Time Comes that was distributed on PBS to talk about the various perspectives on medical aid in dying. Those who were for it and why, and those who were against it and why. When we started the film, there were only three states that had medical aid in dying. When we finished it in 2020, there were ten plus DC and now there are eleven plus DC. And we are waiting, waiting because the New York State legislature in May passed medical aid in dying, and Governor Kathy Oakel has yet to sign that, even though the legislature passed it.

Meryl Comer: 14:27

Diane, what do you say to families navigating these difficult decisions and understanding there's a window of time when that decision must be made if it will be honored?

Diane Rehm: 14:38

I had said to both my children and my grandchildren that should I begin to show signs of Alzheimer's, because I know that no law in the district or in any part of this country would allow medical aid in dying for Alzheimer's. I am going to Switzerland. Europe has become far more advanced, as has Canada. So you've got Switzerland, you've got Germany, you've got Belgium, you have the Netherlands, Finland. I mean, you've got places to go. You have to make your own decision. I do not want to live with Alzheimer's or Parkinson's or ALS. I do not want to live my life if I cannot live my life in my full capacity. I'm eighty nine. I've had a great life, and I have no desire to be cared for. I've said to my husband John Hagadon that if I have a stroke or a heart attack, I'd prefer he not call nine one and just let me go because I do not care to live a limited life when I have had such a full one. That may sound selfish, it may sound as though I'm preaching to everyone, but I'm not. I'm only saying to legislators around the country. You have no right to control my decision as to when I die. And that is my message to every legislator throughout the country because people are begging for the right to die. The right to make their own decision when their time comes.

Meryl Comer: 17:05

Given that most assisted dying laws in the U.S. require mental capacity and self-administration of medication, many dementia patients lose that decisional ability as the disease progresses.

Diane Rehm: 17:19

That last phrase, Meryl, is key as the disease progresses. At my age, as you have seen, sometimes I forget names. Sometimes I forget where I put my cell phone. I'm constantly looking for my cell phone, but my life is still all together. For the most part, I live alone, I drive, I shop, I cook, I can do everything I want. If that begins to diminish and I realize that I'm losing it, I will go. But that's the key. So many people want to deny that they are experiencing these, can we call them the lapses? I mean, when the lapses begin, when you've driven out the door and then you forget where you're going, when you take the dog for a walk and you lose your way, when you've walked that way a million times, then it's time to be worried.

Meryl Comer: 18:38

Diane, how do you reconcile diverse cultural and religious views that see refusal of care like stopping feeding as morally unacceptable with respect to individual autonomy and end-of-life decisions?

Diane Rehm: 18:53

You know, I believe each and every one of us is entitled to make that choice. I am making the decision when I have a choice to live or die. And I've made the decision to die.

Meryl Comer: 19:13

Diane, this is a very complicated and very personal discussion. And one of the issues that comes up when you look at complications toward the end of life are decisions about heroic versus comfort care.

Diane Rehm: 19:27

I do not believe that heroic means to keep someone alive for as long as possible. Why? And I know I'll offend many people by saying this, but if I am told tomorrow that I have a serious form of cancer, I will not take any medication, I will not take any infusions, I will not have chemotherapy or radiation therapy, I will go to Switzerland.

Meryl Comer: 20:09

Diane, let's switch gears for a moment because you've shared that you are 89. Now, by all criteria, you are in fact what researchers call a superager. Someone over 80 who has maintained a level of cognitive performance comparable to those in their 50s and 60s. So if I call you a superager, Diane, are you flattered or are you insulted?

Diane Rehm: 20:34

I don't know what to be. I just know that age is a number. I can do everything that I have always done. I still pick up my 13-pound dog under one arm to take her out for a walk. I have done Pilates for at least 20 years. I continue to do Pilates. My adorable Pilates instructor says I am her star pupil.

Meryl Comer: 21:15

So, Diane, many superagers exercise 20 to 40 minutes several times a week. So for you, we're going to check that box, all right?

Diane Rehm: 21:23

I think you also have to check off diet. Lots of people think I'm nuts. But what I have for breakfast are two hard-boiled eggs and a medium-sized bowl mixed with blueberries, raspberries, strawberries, and topped with pecans and water. I drink no coffee, I drink no tea. I do not eat lunch. Ever? Ever. It makes me sleepy in the afternoon.

Meryl Comer: 22:03

So how about dinner?

Diane Rehm: 22:05

Oh yeah, I eat beef, lamb, chicken, fish. Then I always have at least one vegetable and a salad or two veggies and sweet potatoes. And I do have two ounces of vodka on the rocks every night.

Meryl Comer: 22:29

All right, Diane, we're gonna check that box and we'll give you an allowance for alcohol. How about good sleep? How's your sleep these days?

Diane Rehm: 22:37

My sleep is wonderful.

Meryl Comer: 22:40

And superagers often report lower levels of depression and anxiety and say that mental well-being contributes to their success in aging. May we check that box?

Diane Rehm: 22:51

You certainly can check that box. I live in a wonderful condo in Northwest Washington. I love my neighbors. It's a big building with 240 units. Walking Bella every day, I see everybody. We have grand social events, big ones, small ones. I'm talking on the phone with friends daily. You know, it's a good life, Merrill.

Meryl Comer: 23:27

So listening to you, Diane, you're hanging out with a bunch of other superagers, right?

Diane Rehm: 23:32

Yeah, exactly. But they're mostly younger than I. Mostly younger than I. They're all doing things that if I were 20 years younger, I'd be doing too. But I feel as though I've got enough on my plate. My husband has been married for eight years. He lives half a year in Florida and half the year here. So he goes back and forth monthly. We have a good life together, we have a lovely social life, we enjoy movies, we enjoy books, we enjoy dinners together. So I have no complaints except I wish I could see my children and grandchildren more than I do. That's my only complaint.

Meryl Comer: 24:32

I'm sure that's a complaint shared by most grandparents.

Diane Rehm: 24:36

Exactly.

Meryl Comer: 24:37

Diane, so now that you've passed the test, are you willing to wear the crown of a superager?

Diane Rehm: 24:44

Tell me what the crown looks like. You see, my hair is fluffy.

Meryl Comer: 24:49

Please, Diane, just say yes and thank you.

Diane Rehm: 24:53

Okay, yes and thank you.

Meryl Comer: 24:56

Our guest, Diane Reem, the treasured talk show host of National Public Radio, for more than five decades. Recipient of many awards, she received the National Humanities Medal in recognition of her work for her role in civic discourse. That's it for this edition. I'm Errol Comer. Thank you for brainstorming with us.

Closing: 25:20

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