NPR host Diane Rehm recalled when her husband made the decision to end his life.
Her husband, John, had suffered from Parkinson’s disease for eight years, had lost 50 pounds, and had moved into assisted living when he announced his wishes to his family and doctor.
“And John said, I am ready to die,” Rehm recalled. “I can no longer feed myself. I can no longer stand. I can no longer walk. I am living in indignity and I know the path of this disease will take me even farther into indignity and I am ready to die.”
Rehm recounts his decision to hasten his death by refusing food, water, and medication in her latest memoir, “On My Own.” She discussed her life and her advocacy for death with dignity with author Ann Patchett as part of the University of Louisville’s Kentucky Author Forum. The program was taped for KET’s Great Conversations in March at the Kentucky Center in Louisville.
Born in Washington, D.C., to Arab immigrants, Diane Rehm lost her own parents early in life. Her mother had been ill for some time, and Rehm learned from the family doctor that her mother would die. Her father forbade her from telling her mother that she knew.
“I knew that my mother wanted me to see me married to an Arab before she died. I knew that,” Rehm said. So at 19 I was married to an Arab man, a family friend.”
Her mother died two months later, and her father died 11 months later of a broken heart, Rehm said.
“And the first thing I did because I was finally free to make a decision on my own, is to get a divorce,” she said. “He was a kind man; he was a nice man. I’m still in touch with him. But he thought he was marrying his mother. And he was not.”
Rehm, who trained to be a secretary as her father wanted, took a new job at the State Department, which allowed her to see a wider world, she said. “I started reading books, for the first time, really. So one day on my desk at State Department were three books: ‘The Essays of Alfred North Whitehead,’ ‘The Brothers Karamazov,’ and Somerset Maugham’s ‘Of Human Bondage.’
“And in walks a young man, tall, built like a football player, with a crew cut, a lawyer, named John Rehm, who was absolutely fascinated that I, a secretary, had these books on my desk. And he was wondering why. And he did work for my boss. And so we got to talking about those books.”
The Rehms were married for 54 years. Patchett read a passage from Rehm’s book about their marriage. “There’s a quote in the book that says, “John became my teacher. There was no question that I could ask him that he couldn’t answer. He loved teaching me,’” Patchett said. “That is a really specific, beautiful and dangerous dynamic. Do you want to talk about that?”
“Well, I think it was beautiful, and it did become somewhat dangerous later,” Rehm said.
“I think those are two interesting words you’ve chosen. It was beautiful because his interest was global–his interest in music, his interest in literature, in art.”
Mr. Rogers’ Neighborhood
In her 30-year radio career, Rehm said one of her favorite guests was Fred Rogers of “Mr. Rogers’ Neighborhood.”
“I believe that Mr. Rogers was one of the great teachers of our time. He taught not only children, but adults, kindness, thoughtfulness, tolerance for oneself and one’s shortcomings, understanding of other people. He was fabulous.
“So, one November I had Mr. Rogers on. … And all of a sudden, I don’t know why I asked him this, Ann, but it’s sort of the way I like to let my instincts go at times. And I said to him, Mr. Rogers, do you ever get sad? And he said, oh yes, I do. And I said, what do you do when you get sad? And he said I play the piano.
“And he said, I think I’ll be playing the piano a lot today. And I said, well, why are you sad? And it was such a profound answer that I couldn’t follow it up. He said well, my stomach hurts. And I could not go further. I could not say to him well, why did your stomach hurt?
“He was dead three months later. Mine was the last live interview he did.”
‘I am absolutely sure’
Rehm said she and her husband had talked about their end of life wishes and promised each other they would help each other die. His parents had each committed suicide.
“You mention that in the book, but without detail,” Patchett said.
John Rehm’s father, who operated a small farm by himself, developed diabetic retinopathy. “And when he could no longer see, he knew he could no longer live on the farm by himself,” she said. He took his own life.
“John’s mother lived to be 92, but because her hip and back were so bad, and she refused to have any kind of surgery. She took her own life at 92,” she said. “So this was around us.”
“And something that in his family there was a sense of control about,” Patchett said.
“Absolutely,” Rehm said. “And that’s what he expected for himself.”
When John Rehm’s doctor said it was not legal or ethical in the state of Maryland for him to help a patient die, he told them the only option was for John to refuse food, medication, and water.
“When we all left John’s room that day, I came back the next morning not knowing what decision John would make,” she said. She asked if he was OK, and he revealed he had not had water, food or medication, and he felt great.
“And I said are you sure you want to do this? And he said I am absolutely sure. And he was fine for two days. But at the end of the second day, he went to sleep. And for the next eight days, he stayed in that situation. I was there the whole time.”
The End of Life Conversation
Rehm said she is making it her cause in life to urge people to talk within their family about their end of life wishes.
“We do not want to talk about death, even as it is as much a part of our lives as birth. And we don’t talk about it. So I’ve written this memoir not only talking about the difficulty beyond John’s death and widowhood, but really urging people to gather into family groups, neighborhood groups, friendship groups” to discuss end of life wishes.
She said she supports improving palliative care for people who choose to remain alive as long as possible. “That should be your choice,” she said. “At the same time, if I am sick and I know that I have a choice between palliative care, more chemotherapy, more radiation, or choice of dying, I am going to choose death with dignity.
“I shocked, I think, some television viewers on a program not long ago, by saying – and I don’t mean to shock you – if I suffer a heart attack, if I suffer a stroke, I am now 79. I will be 80 in September. … I’ve had a fabulous life. I will not call 911. I do not wish to go to a hospital to be intubated, to die in a sterile room with no one but doctors and nurses surrounding me.”
Patchett asked Rehm what would happen if neighbors or bystanders called 911. “What you have to make yourself ready for,” Patchett said, “is someone going to drag you into the back of an ambulance—“
“Not me.” Rehm said. She recalled a recent sore throat and cold chill she suffered on her book tour. Medics were called, but Rehm refused to be taken to the hospital.
As it turned out, she was sick for three weeks with the flu. “But what I’m telling you again: You’ve got to push against what you don’t want.”
She encouraged younger adults to begin the conversation with aging parents about their wishes for the end of life. “Our generation is going to be the largest portion of the population before you know it. And we’ve got to think about – I’m telling you, nursing homes are not where you want to be.”
“Can I say that the best place that I can think of to begin this [end of life] conversation is to have people read your book?” said Patchett. “Because I think that your book is so full of contradiction and doubt, and love and loss, and life and grief, and it’s exactly the way it is. It’s not just, I’m settled. It’s confusion and questioning and grappling – which is what you do on your show day after day. … I think it’s a beautiful beginning for everyone’s conversation.”