WBUR

On Doctor-Assisted Suicide, Stances Rooted In Intimate Experiences

John Kelly, a disabilities rights activist and founder of Second Thoughts, and Dr. Marcia Angell, a senior lecturer at Harvard Medical School, at WBUR in September (Jesse Costa/WBUR)

John Kelly, a disabilities rights activist and founder of Second Thoughts, and Dr. Marcia Angell, a senior lecturer at Harvard Medical School, at WBUR in September (Jesse Costa/WBUR)

BOSTON — This Election Day, Massachusetts voters will weigh in on the difficult issue of physician-assisted suicide. Specifically, whether terminally ill people expected to live six months or less should be able to get a lethal prescription from their doctors so they can end their lives on their own terms.

The main supporter and main opponent of this ballot question have appeared on WBUR in recent weeks to debate the merits of assisted suicide. Now, they speak with WBUR’s All Things Considered host Sacha Pfeiffer about their very personal reasons for their stances.

First, Dr. Marcia Angell of Harvard Medical School. She led the effort to get the Death with Dignity initiative on the state ballot, although she doesn’t like to call it assisted “suicide.”

“I think there’s a real need to drop the term ‘suicide’,” Angell said. “The typical suicide involves somebody with a normal life expectancy who chooses death over life. And in the case of assisted dying, the Death With Dignity Act, these people are already dying.”

Angell began questioning how dying people are cared for when she was an intern at Mount Auburn Hospital in the 1960s. She says pain treatment then was “woefully inadequate,” and she came to believe that terminally ill people should have more control.

“In those days you couldn’t even ask to have life-sustaining treatment stopped,” she recalled, “and so I saw patient after patient die very sad deaths.”

She became convinced of the need for what she calls “assisted dying” two decades later, when her father, who had had prostate cancer for several years, did something drastic.

“He died in March of 1988. Starting the Christmas before, he began to have severe pain, had radiation for that, then had side effects from the radiation, then took pills for the side effects, for the nausea, then had side effects from the pills. And it was that downhill spiral,” Angell recounted.

“He was walking to bed one night. He was walking with a walker by that time. And he stumbled and fell. My mom wasn’t strong enough to lift him up and put him into bed, and so she called the EMTs, and they came and lifted him and put him into bed. And they said, ‘We’ll be back tomorrow morning and we’ll take you to the hospital for X-rays to make sure you haven’t broken anything.’ So that night he took a pistol from his bedside table, where he had kept it all of my life. He believed in defending his family, and that’s what that pistol was there for all of those years. But he took it out that night and he shot himself and died instantly.”

Dr. Marcia Angell with her father in August 1987, months before he killed himself (Courtesy)

Dr. Marcia Angell with her father in August 1987, months before he killed himself (Courtesy)

Angell and her mother had no idea her father was considering suicide.

“I would have talked to him about it, I think, if I thought that he was immediately considering it,” she said. “But that he would not have chosen to live under any circumstances, no matter how awful — I was aware of that. He would not have wanted to eke out every last day no matter how miserable it was.”

Her father’s sudden suicide had a different impact on her family than if he had died naturally from cancer or from a fatal prescription, Angell said.

“His last moments make me feel very sad. The loneliness, the courage he had to screw up to do it — I feel very sad about that,” Angell said. “And I think if he had had assisted dying, and he could have had medication on his bedside instead of a pistol, and it was something that was legal and that was accepted and something that he could have spoken with my mom about, I think he would have lived longer. And I think it would have been much easier for the family.

“Having said that, the thought of my father suffering not only from the symptoms of dying — and pain, in a sense, is the easiest one to relieve — it’s much harder to relieve symptoms like weakness, nausea, shortness of breath, loss of bodily functions, which is awful for a lot of people. They equate that with indignities. I think he would have considered that an awful thing, to die by inches over months.”

It exasperates Angell that the main group opposing the ballot question says legalizing physician-assisted suicide could send the message that some lives are more worthwhile than others. That group, called Second Thoughts, is made up of people with disabilities and is led by John Kelly, a quadriplegic.

“This has nothing to do with disabled people, nothing whatsoever,” Angell said. “This has to do with the terminally ill, which they are not. It’s fine for them to take whatever position they want to. But they have no special standing. This is about terminally ill people who have a life expectancy of six months. It is not, ‘Is your life worth living?’ This is not about what he thinks or anybody thinks, except the patient.”

Next, we speak with John Kelly, a disabilities rights activist and founder of Second Thoughts.

Kelly, the lead opponent of the ballot question, disagrees with Angell’s argument that physician-assisted suicide is not a choice between life and death because terminally ill people are just choosing how to die.

John Kelly (Lynn Jolicoeur/WBUR)

John Kelly (Lynn Jolicoeur/WBUR)

“Marcia Angell makes this equation between having a terminal diagnosis and being dead,” Kelly said. “It’s as if the person is already in a separate category from life and all that matters is the manner of their death, when we see them as still living.”

According to Kelly, he does have an intimate stake in physician-assisted suicide because he’s severely disabled. And he says the life he lives is the kind of life this ballot question seems to suggest isn’t worth living.

“I had a spinal cord injury 28 years ago in an accident, and I’ve used a wheelchair for mobility ever since,” Kelly explained. “And I am paralyzed from the neck down, in the common parlance, which means I can use my shoulders and my head and my neck, and I drive my wheelchair with a sip-puff drive tube.”

Kelly has many of the same physical problems as some terminally ill patients — problems that able-bodied people often describe as “indignities.” But he isn’t dying and he lives what he considers a full, relatively independent life. He’s now 54 and heads Second Thoughts, an organization of people with disabilities who oppose legalized assisted suicide. He’s against it, he said, even though there was a time after his accident when he wanted to end his life.

“And I actually thought about how I might be able to do it,” Kelly recalled. “And I thought about the bus, and I thought no, that’s too squishy. And I finally settled upon going over to the Fens, over there with the mighty creek called the Muddy River, and that I would back myself up and tip into the water, and then I would drown. And once I thought about that that way, I stopped thinking about it. I wanted to know that I could. And so I can understand people’s desire for that control over their body.”

Asked why he thinks other people shouldn’t have help from the law in forming a so-called “exit plan,” Kelly responded, “What I’m saying is that the state should not be approving of certain exit plans for certain reasons without paying attention to all the people that will be impacted in a negative way by this bill.”

That would include people with illnesses or disabilities who feel that a physician-assisted suicide law would send the signal that their lives are not worthwhile, he said.

“And if you go see a doctor and that doctor starts talking about assisted suicide, that might feel like a radical betrayal,” Kelly added. “I know it would for me.”

As for physical limitations he has that other people describe as “indignities,” Kelly said they include incontinence.

“I don’t have willful control over my bladder or my bowels,” he explained. “And as someone who was able-bodied, who became totally dependent on others for my physical care, it was incredibly difficult for me. But what was difficult was not the physical loss so much as my experience around the feeling of loss of control or of shame. And so we disabled people are here to say, ‘You know, your physical condition is not related to your worth as an individual.’ If you need someone else to help you with certain things, that’s really OK. You had that when you were young, some of us have it all our lives, and then it comes back at the end of life.

“Everyone can make their own decision and refuse any treatment. But when the state says, ‘For you people in this situation, it’s dignified for you to kill yourself,’ it undermines our suicide prevention efforts. People who are not as independent and in control and autonomous as the proponents of this bill are will be impacted.”

Kelly said he isn’t suggesting people should just tough it out.

“The problem is real. People suffer,” he said. “I sympathize with people who are losing bodily control and can’t get of bed. And it is hard. But this is not the way to solve it. I don’t want to be portrayed as the evil naysayer who says buck up and take it. But we’re concerned about everyone in society who might end up in a situation in which people around them think that they might be better off dead.

We want to say, ‘Hey, we understand.’ But let’s try really good home care. Let’s make sure that everyone gets early, full, good hospice so that we’re not subjected to a radical lack of control with a bottle of pills at the end.”

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  • Matmath

    This is the most ridiculous story I have heard in a long time. Let me get this straight, this guy Kelly doesn’t think that people with a terminal disease should be allowed to choose to die with dignity? Why? Because he is disabled? Having a disability is not the same as having a terminal disease! He considered suicide because he was depressed? Join the club! This law is not about helping depressed people kill themselves. It is about giving those in need a choice. It is about dignity. Why did you waste our time with this. 
    “The problem is real. People suffer,” he said. “I sympathize with people who are losing bodily control and can’t get of bed. And it is hard. But this is not the way to solve it. ”
    Kelly doesn’t seem to realize that there is no solving this. THEY ARE TERMINAL!!!!!!!!

  • Ncla6

    I agree with with Matmath is saying, and I would like to add that no one is FORCING terminally ill people to take their own lives. If this bill becomes law it provides a legal and compassionate OPTION for a terminally ill patient to end his/her life with dignity. The state is not insisting on a termination of life; this is a bill about patient choice.

  • Guest

    As a geriatric social worker, I have significant concerns about this bill and agree with opponents that “choice” is an illusion. The reality is that many people experience guilt about the cost of care and coercion by family and caregivers; many others experience abuse, exploitation and neglect.  There are simply inadequate safeguards against this in the proposed bill- putting people at risk for being administered lethal medication without consent. Perhaps most concerning is that if this bill passes, death will become a medical benefit.  It is very naive to think that cost will not play a major role in the prescribing of lethal medication, as it is much cheaper than care.

    Hospice provides wonderful care and employs such measures as palliative sedation in extreme cases to ensure that people do not feel pain at the end of the live.  This is a dangerous and unnecessary bill. 

    • Hinda

      I  am a hospice social worker for a home care agency and have worked with the disabled and elderly as well.  The terminally ill person, whatever their age, should have the the legal right to ask a supportive physician for assistance to end their life how and when they choose.  Hospice helps those who have chosen to cease aggressive treatment end their days relatively pain free.  But it doesn’t end the psychic pain and fear of more pain.  I sit with patients every day who say to me, “I just want to die.”  “Why am I not dead yet?” “Why doesn’t God take me, I don’t want to suffer any longer.” They know there will be no cure and that they are waiting, while their loved ones look on in anguish, for the end to come.  And for many, it does not come soon enough.  Not everyone will choose this path but for those who still have capacity, understand the ramifications of their choice and have a physician who knows them and respects their wishes, ending their lives on their terms should be an option. This debate should have nothing to do with the disabled who are not terminally ill, insurance companies, religious institutions or politics.  It is about self determination.  My father used to say, “You should leave the party while you are still having a good time.”  We should have the right to leave this life when to endure has become untenable.

  • Jessie

    Just the fact that there exists a “legal” way of ending lives of the terminally ill DEVALUES those lives. This is an issue of people with DISABILITY who are losing control over their bodies/lives. Why should we let them consider SUICIDE when we see them suffer? The ONLY thing we need to is to PREVENT those thoughts. 

    • Pvteye

      Really?  Prevent thoughts?  Grow up please.  Its frankly NOT about what YOU thiink – its about them.  Ending life should be the choice of the individual….and it certainly does NOT devaaluate anything.  You suggest it is some kind of ‘evil’ thing and that what these individuals did, accomplished througout their life will somehow all be diminished because they want to end their suffering.  That is simplistic thinking at its best and just plain idiotic at is worst.

  • Rynmaura

    Tough issue.Kelly’s point is well taken.It does concern me that disability may translate to inability to live.

  • jamie

     I have never understood why the issue of disabilities comes up when physician assisted suicide is being discussed:  what is the connection? This vote is not about them, it is about people who have terminal illnesses and who no longer want to suffer, and who will need to be evaluated by a physician.  Why are disabled people concerned – why do they want people, in a situation which in no way relates to them, to suffer?  And who are they to think they have the right to make this decision for those with terminal illness?
    That said, I don’t think anyone should *ever* have the right to determine whether someone else must endure a life of pain.  Anyone who thinks there is a painkiller for all pain, or that it is easy to commit suicide alone, is completely ignorant.  And anyone who thinks that a person suffering must just go on, from one day to the next, in an existence made empty and meaningless by pain, is a sadist.

  • Skylerwave

    We have physician-assisted end of life voluntary “suicide” in the Pacific Northwest and it is fine, usually terminally ill cancer patients.  It only involves 30 – 60 people a year and is no big deal.  It is compassionate to allow terminally ill folks  way out. 

  • http://www.facebook.com/people/John-W-Warren/100002636243156 John W Warren

    I live with constant pain.  If that isn’t bad enough, the DEA is terrorizing doctors by arresting some they think are “prescribing too many pills.”   They tend to miss the point that people in pain need something other than a physician who greets them with “Oh, you are the herniated disk” and flock to the compassionate ones.  So I constantly worry that my doctor may cave to the pressure.  There is something wrong with the entire system and people like Kelly are getting their jollies out of making people suffer.

  • guest

    I have a problem with people not walking in my shoes , and living in constant pain 24/7 telling me to deal with it . You have no clue what it’s like to live like this . How would you feel if you knew for a fact the only thing you had to look foreward to was another day spent in terrible pain . And why the terrible pain everyday ? Because nothing relieves it . Physical Therapy doesn’t help , makes it worse . Walking , standing , sitting , laying down can only be done for a short amount of time because of the pain . So don’t try to tell me to think happy thoughts or grin and bear it , or things will look better tomorrow . No they won’t ! It is not your right to tell anyone what to do with their life . You may not like what people choose to do with their life . But it’s not your life . It’s not up to anyone to let their opinions and morals interfere with what others choose to do . When people living in chronic pain , or with other chronic issues want out it won’t matter if  they can get assistance dying or not . So stop trying to play God .

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