Why They Joined the Right-to-Die Movement
Follow @azmatzahraNovember 13, 2012, 9:07 pm ET
The stigmas associated with what they do can make the work of the volunteers, activists and advocates involved in the right-to-die movement challenging and risky. So why do they do it?
FRONTLINE producers Karen O’Connor and Miri Navasky spoke with several of those who work in the movement; here are excerpts from their conversations.
Barbara Coombs Lee:
President, Compassion & Choices
I came to the movement for end-of-life choice through my work in medicine, of course, but more so through my work in law and policy. I had practiced nursing and medicine for a long, long time and then went into law in order to see and impact the bigger picture.
It just so happened that my first job out of law school was with the Oregon Senate. I staffed an Oregon Senate committee. And I would say that was seminal experience of understanding how my experiences at the bedside translated, or didn’t translate, into law and policy.
And it was then that I realized two things: One, that that perspective of the intersection between clinical medicine and law and policy is a crucial intersection; and number two, that of all the players in the health policy field, the people who get the shortest shrift are patients. And of those patients who get short shrift, the shortest of all are patients who are dying.
My committee happened to have been the committee on health care decision-making, health care and bioethics. And one of my committee members was Sen. Frank Roberts, a wonderful, wonderful man, one of the few men in politics whom I would call a statesman. He was revered. He was called the conscience of the Senate. He had been there for a long, long time. Just a wonderful, brilliant, and kind man, who was himself in the terminal stages of prostate cancer. He was crippled from his radiation, so he scooted around the capitol in a wheelchair. This was very important to him, this issue about his own end-of-life choices. And he introduced a bill that year — it was 1991 — to allow people end-of-life choices, and it was heard in my committee.
Now, you would have thought that Frank, being who he was, and his circumstance in life, it would have been as fair hearing and a genuine debate. He was a man who was dying, he was a man who was revered by his colleagues, and he was married to the governor at the time. But his bill got no serious consideration at all. And it was that back-scenes look at how disparaged and unwelcome in the political arena are conversations about the end of life that really opened my eyes.
Frank did die of his illness a few years later. He died in the governor’s mansion. He died in a manner that was probably his worst nightmare. It was long; it was prolonged. He did not live to see the rights, the choices that he wishes for himself and other terminally ill people to come into being.
Regional Coordinator, Final Exit Network
My experience as a nurse led me to believe for myself that I would never want to suffer like that. I would never want to be in an ICU, hooked up to all kinds of machines. And so I started looking early on.
Back in the ’80s, I joined the Hemlock Society. I started talking about it. I never got really connected at that time. I was married, moving around. My children were young. But it was always there, and I was always looking.
And in 1988, one month after a divorce, I was diagnosed with a brain tumor. Fortunately, it was benign. I was terrified. And I made it known immediately, got advance directives and told everybody that if anything happens to me on that operating table, just let me go. I’m not coming out of this with any kind of significant complications. I survived that surgery very well.
Shortly after that, I started developing some very scary symptoms, something called fasciculations, which looked like worm-like twitchings under your skin. And I knew that it’s symptomatic of ALS, which is Lou Gehrig’s disease. Now I’m really concerned, and now I’m really [thinking], “What am I going to do? What if this happens to me?”
And I began looking more and more in earnest for how I would be able to end my life. And I read some things; I read Derek [Humphry's] book, [Final Exit]. Helium — I had read about it, and I thought, OK, that’s what I’ll do if I have to. I’ll think of some way to do it. And I was alone. There was nobody that would have been with me. I had this elaborate plan of going to a motel and setting things up and I’d get through it.
Well, those things passed after a while, thank goodness. I did go to a doctor. He said, “Well, you’re right. That’s what you got. How about we do an MRI?” I said, “No thanks. If this is going to get worse, I’m going to know it, so I’ll deal with that when it happens.” Did okay.
[In] 1995, I was diagnosed with breast cancer. Oh, here we go again. And fortunately, earlier, probably about 1992, I heard Faye Girsh speak at a Unitarian Universalist fellowship that I was part of, and she was speaking about the Hemlock Society, and she left a brochure. And I kept that. And after my breast cancer, I followed up on it and joined, and then I learned that they were looking for volunteers. And so I thought, “Aha, I will sign up to be a volunteer.”
And quite frankly, I was looking to become a volunteer — selfishly, you might say — because I wanted that information for myself. I wanted to know. So I didn’t even know that they would accept me, but they did.
I went to the training. And when I participated in that training, and I saw what was demonstrated, and I saw the people there that had this commitment, that it was like, oh my goodness, here are all these people. They don’t know me. They know nothing about me. But if something happened, they would come and they would be with me. They would not abandon me. They would show up and they would be present when I decided to end my life. And I thought, “How can I not join this group? How can I not give back to other people, quite frankly, what was given to me?” And ever since 2007, I have volunteered as an exit guide, as a coordinator, and have become involved in leading the training and those kinds of things. …
Being present for these exits, I would have to describe as both a privilege and a gift, because I am privileged that these people trust me and trust the guides that are with me, that we can be there with them and their family to witness such a significant event in their lives. When someone is born, there are all kinds of people around to celebrate the birth, and in some cases there are many family members around to celebrate also. And in other cases, there isn’t anybody. And I don’t think anybody should ever have to die alone.
Exit Guide, Final Exit Network
I got started way back when we had a cottage, and across the street from us was a wonderful, marvelous lady who was a very devout Roman Catholic, but who was also a diabetic. She was just one of the great ladies I’ve known in my life. We became very close. We became like family with her. She lost one leg to the diabetes. And no problem, she got a pair of crutches and back on her way again. And then the second leg got infected. And that was a moment of decision.
The devout, religious person she was, she said, “Take it off,” and she went to a place that was then a horrible nursing home, [with] the people going “bah-bah-bah-bah.” Here’s this wonderful mind, locked up in what I call a Chinese laundry. It was truly sad.
I was a commuter at that point. I commuted weekly from New York, where I had an apartment, and I would spend an hour or with my friend Celeste. And this went on for, I don’t know, seven, eight years. And during that time, it caused me to start thinking about the fact that, like all the rest of the people in the world, there’s a finality there. And I got thinking about my own demise, not knowing when it was going to happen, how was it going to happen. And I looked around and I said, “I certainly don’t want to be in a place like this.” And I became very strong in my opinions about it.
Now, I don’t belong to an organized religion, but I have religious beliefs of my own, and I have great regard for people of a variety of religions. … But about death, I have great recognition and acceptance.
How has that experience been for you?
Remarkable. I remember going to a death. I was a guide, the junior guide. I’d gotten to know this person, spent a better part of a day with the individual, a very intelligent, well read, thoughtful, caring individual who had no more family left. Fortunately, the chemistry was good for her and for me. It made it much easier. She made it easier for me.
When it came time for her to leave, I was concerned about how she would be affected, and how I would be affected. And I was amazed at how peaceful, and there was almost like an aura for me about it. And I felt grateful to be in her presence at that time. And it was not a bad experience. So when the time comes for me, I hope to be that fortunate.
Medical Director, Final Exit Network
When I was in the Army as a flight surgeon, I didn’t know what I wanted to go into, and I was lucky enough to be down the hall from the eye, ear, nose and throat clinic. And the ophthalmologist who was assigned to the base took me out to watch a cataract operation, and I thought, “Oh God, that’s simple. I can do that.”
So I got interested in ophthalmology, and I was trained at Manhattan Eye and Ear as an ophthalmologist, and had to get my family out of New York City, and off we went to the state of Maine, and I practiced private practice ophthalmology from 1968 to 1996. And it was a great place to have kids and a great place to practice, and in a field where so many wonderful things happened all at the same time: lasers and lens implants. I’m a gadget freak, and I just loved what was going on in that field.
But I eventually burned out. I’d become a human doing instead of a human being. So I took two years off and started sailing, and then ended up doing several other things, but I ran into situations in my family and among friends where people were having ugly death.
And I had dogs. And I had the misfortune that I had to put down two of my dogs, my best. And I thought, we do this for our dogs, and we call it humane. And what do we do with our old people? We put them in the hospital, where there’s noise and there’s smell and there’s people around that change every 12 or 24 or 8 or 12 hours. We got tubes going in and tubes coming out. This is not a dignified way to die. This is crazy.
Counselor, Compassion & Choices
I’ve been a volunteer with Compassion & Choices for over six years. … What’s drawn me to this work are several different things. One is that I’m real comfortable with death and dying, and I know that in this country, that it’s almost a taboo. There’s much discomfort. And I see it’s a way for me to take my interest in it and to contribute.
Also, I believe in people having choices, and no matter what it is. And in this particular instance, I strongly believe that people should have a choice to end their life if they have a terminal disease and they’re suffering and not having good quality of life.
Exit Guide, Final Exit Network
Part of my feelings are compassion for people in pain. If there’s anything I can do to alleviate that pain, I’m going to try to do it. I want to be where I’m used the most. …
I became an exit guide probably around the late ’90s, somewhere in that area. And after I’d made about five or six exits, I thought, hey, this is easy. I’d been working with a doctor, and I told him that I would like to become a senior guide. And there were some other people at the same time, because this one doctor was having to go with everybody, and he was actually overworked. So he had a training class, and there was five or six of us went to a training class to be senior guides. So from that, I have been involved with many, many more.
[What has your experience as a guide been like?]
It’s the same all the time. It’s concern, it’s fear, it’s compassion. I worry about it ahead of time, I lose sleep over it, I make the exit, then I lose more sleep wondering: Did I do everything right? Are the police going to find out about it? But I know it’s going to happen.
But I get the feeling that I’m helping somebody in a manner that not many people in the United States could do. That gives me a little bit of [elation] on that.
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