When I read the other day that NPR talk show host Diane Rehm, (whom I've known for more than 30 years) had lost her husband of 54 years, I naturally felt sad. But sadness turned to shock when I learned how John Rehm died.
After years of Parkinson's slowly robbing him of most of his functions — he could no longer feed himself or use his arms and legs — Rehm asked his doctor for help. He wanted to die.
But Rehm's physician was based in Maryland, not one of the handful of states where doctors are permitted to provide their terminally ill patients with life-ending medication for a quick, peaceful and painless death. His only option: refuse all food and water. Death by dehydration. It took 10 days.
“We don't let our little animals suffer and people shouldn't have to suffer,” Diane Rehm told NBC News. And because Rehm says her husband “felt betrayed” by his doctor and that his suffering was “unnecessary,” she's gone public.
She is now part of the growing aid in dying (or assisted dying) movement which believes in the right of the terminally ill to end their lives with dignity.
Over the past 40 years, according to Gallup, public support has grown from 53 percent to 70 percent for a doctor “being allowed to end a patient's life by some painless means if the patient and his or her family requests it.” But when the phrase “doctor-assisted suicide” is used, support is only 51 percent.
Assisted Suicide Vs. Aid In Dying
“Aid in dying and assisted suicide have nothing to do with each other,” says Barbara Coombs Lee, an attorney and President of Compassion & Choices, the group dedicated to expanding and protecting the rights of the terminally ill. “One is a medical practice and the other is a felony." In Montana, Oregon, Vermont, Washington and one county in New Mexico where right-to-die is the law, assisted suicide is outlawed.
“It's like calling surgery a stabbing or chemotherapy poison,” says Coombs Lee, co-author of the nation's first death-with-dignity law in Oregon.
Just as boomers have been central to the civil rights, women's rights and gay rights movements, they are now driving the aid in dying effort. Coombs Lee says there's a reason: "It's the boomers' personal experience with the deaths of their parents that has opened their eyes, awakened them to the harm [of not having the choice to end your own life, if you're terminally ill]. And because of that, they are starting to think of their own end-of-life plans.”
Coombs Lee began fighting for death with dignity after she was exposed to “good deaths” and “bad deaths” as an ICU/ER nurse and physician assistant. She says she participated in a number of deaths she would not consider “good,” including “tying people's hands to bed rails so they wouldn't pull out their tubes or invading their bodies with very burdensome painful procedures."
Sometimes, she says, she thinks of her work as "redemption for some of the wrongs I did on dying people.” Coombs Lee adds: “It's immoral for society to turn its back on the terminally ill and say 'Fend for yourself!. Get a gun! Jump off a balcony! Don't bother our doctors with your desire for a peaceful death!'”
A Watershed Moment
Historians may look back at July 2014 as a watershed moment for aid in dying.
Advocates like Coombs Lee have their eyes on the British House of Lords, where a major debate is underway on a bill allowing doctors to prescribe a lethal dose to terminally ill patients judged to have less than six months to live.
It has attracted high-profile religious support from no less than South African Nobel Laureate Desmond Tutu and the former Archbishop of Canterbury George Carey, who dropped his long-standing opposition to aid in dying, saying that by opposing reform, the Church “risks promoting anguish and pain, the very opposite of a Christian message of hope.”
Writing in the British newspaper The Observer, Tutu said: “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying.”
The 82-year-old retired Anglican Archbishop's interest in this issue may have been fueled by the final days of his close friend and colleague, former South African President Nelson Mandela, who was reported to have been kept on life-support amid a family dispute over his care and forced to sit with politicians for a photo-op before his death last year.
“What was done to Madiba (the tribal name for Mandela) was disgraceful,” Tutu wrote, noting that the debate on the aid to dying bill came on July 18, Mandela Day in South Africa — what would have been Mandela's 96th birthday.
After 10 hours of emotional debate in a packed House, the bill now goes to committee but would not become law without government backing. British Prime Minister David Cameron says he's not "convinced" by the arguments for legalized aid to the dying.
Conflicting Views About The British Bill
In an interview with the BBC, theoretical physicist Stephen Hawking, who suffers from a motor neuron disease, is almost entirely paralyzed and talks through a speech generating device, said: “If you have a terminal illness and are in great pain, then you have the right to choose to end your life…it is discrimination against a disabled person to deny him the right to kill himself that able-bodied people have.”
Hawking is 72 and was given two or three years to live when he was in his early 20s. So he was asked by the BBC: since the doctors got that wrong, isn't there a danger that people who choose death could go on to a long and productive life?
“That is a decision the individual has to make. It is wrong for the law to take away that option,” he said.
But the British bill also has its share of critics, including the current Archbishop of Canterbury, Justin Welby. He worries that changing the law could put vulnerable people under pressure to end their lives “so as not to be a burden" and “it would leave the sword of Damocles hanging over the heads of elderly people."
A prominent cancer specialist, Karol Sikora, warned of “death squads” should aid to dying become law, by “putting the decision in the hands of doctors.”
Invoking the Hippocratic Oath
Whenever assisted dying is debated, advocates and critics alike invoke the Hippocratic Oath (“do no harm”) to support their case.
Surgical oncologist and cancer researcher Katherine Morris' first patient to ask her for help in dying was 53-year-old Cody Curtis, suffering from terminal liver cancer. Curtis' end-of-life experience was documented in the film, How to Die in Oregon.
“Cody very clearly taught me that harm for her would have been taking away the control," Morris said on The Diane Rehm Show. "It would have been saying you have to wait and linger in a state of unconsciousness or pain, you have to know that your children and your family are going to watch the suffering. And for her, that would have been the harm. So what she taught me was that harm is different for every single one of us.”
The Movement Now
Where is the assisted dying movement in this country in 2014?
Coombs Lee says even though progress is being made, “it's like the early days of the women's movement when women would meet at the kitchen tables of America and talk about their experience…we're still in the consciousness-raising mode.”
Having just experienced the excruciating final days with her husband, Diane Rehm doesn't need her consciousness raised. A host who has devoted her public radio career to being an impartial interviewer on the most divisive issues, this one is too personal for her to remain a neutral observer.
Not only has she devoted one of her recent broadcasts to this wrenching topic — she shared the circumstances surrounding John's death and why he decided to refuse all food and water — she's also writing a book about it, On My Own, that will be out next year.
Rehm believes “each of us has the right to die with dignity” and says she plans to “move this issue forward with everything I have to honor John for the choice he made.”