Complexities Of Helping Others End Their Lives

Terminal illness patients sometimes feel that their pain outweighs the benefits of life. Dr. Larry Egbert, co-founder and former medical director of the Final Exit Network, says he helped several patients find ways to end their suffering and lives. He was recently profiled in The Washington Post Magazine. He speaks with host Michel Martin.

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MICHEL MARTIN, HOST:

I'm Michel Martin and this is TELL ME MORE from NPR News. Coming up, for more than 1,500 years, scholars and believers have pored over the 63 volumes of the Talmud, the central text of Jewish law and thought - without an index. That is, until now. We speak with the author of the Talmud index in just a few minutes.

But first, it's time to open up the pages of the Washington Post Magazine. That's something we do just about every week for interesting stories about the way we live now.

Today, though, we return to a difficult topic: the end of life. Who should decide when life should end? In this country, by law, custom and faith tradition, that decision has traditionally been attributed to a higher power, except under rare circumstances. But a small, but persistent group of activists have argued for years that people should have the right to make that decision for themselves, especially in cases of persistent and debilitating illness.

Now, many people know the name of Dr. Jack Kevorkian, the late physician who died in June who was a famous and outspoken activist in behalf of assisted suicide.

Less well known, but equally significant in this movement, is our next guest, Dr. Lawrence Egbert. Dr. Egbert is a retired anesthesiologist. He's also the former medical director of the Final Exit Network. That's a group that's helped people suffering from terminal illness end their lives.

In that role, he estimates that he has approved applications for 300 people seeking to end their lives. He says he's been present for 100 suicides in the past 15 years. He was profiled in the most recent Washington Post Magazine. The story is titled, "The End is Near," and Dr. Egbert joins us now in our Washington, D.C. studios.

Welcome. Thank you so much for joining us.

LAWRENCE EGBERT: Thank you for inviting me.

MARTIN: Now, there was an online chat after the article was published last Sunday and you responded to a question by saying, I don't assist in a suicide. I help people stop their suffering. How do you make that distinction?

EGBERT: I think it depends on what you mean by suicide. I don't use the word suicide, either. I think that suicide has a lot of religious connotations. It's a very sad thing to have happen, whereas a number of the people who are hastening their death are stopping their suffering and are looking at it with great anticipation and pleasure.

MARTIN: How do you decide whom to assist? Or in your role as the medical director for Final Exit, how did you decide?

EGBERT: How did I decide to do it?

MARTIN: How did you decide - no. Well, I want to get to that, but I wanted - what was the criterion for deciding whom you would assist and whom you would not?

EGBERT: We start with - the decision starts with a patient who says, I want this. So it's a request. We never ask people to do it. We don't put any pressure on them to do it. A person asks us to do it and we then start with the assumption that it's a reasonable thing and then we ask them why. We ask them why and in great detail. We have a first responder who gives a whole questionnaire. We then interview them. We then require all their medical information from their doctors to send us copies of their medical history.

So then we - if that all seems to make sense, we then assign a guide and the guide can do this all over again in person. In other words, actually meets the person applying.

MARTIN: Now, the article mentions that you once served as a Unitarian Universalist minister and I'd like to ask how your faith informs your work and I also hope you tell us as briefly as you can - because I understand it's a very complicated story because it's a complicated issue - how you decided that this work was work you were willing to do.

EGBERT: That's two questions.

MARTIN: It is.

EGBERT: The first question of being a Unitarian minister at Johns Hopkins University - basically, I was a lay minister who was responsible for Johns Hopkins students who were Unitarian Universalists. And that was interesting and good and, sometimes when we had complicated issues, we would bring up and invite other people in with the possibility of the students to meeting them. But most of the students were not interested.

MARTIN: Well, no. My question was - how does your faith tradition inform your decision to assist in helping people to end their lives? That was my question because, as we discussed, I mean, for most of the faith traditions with which people will be familiar, obviously, some take a different view. That should be acknowledged.

The religions that most people practice in this country - it's just simply wrong. And so I'm interested in how your faith tradition informs your decision to help people end their lives.

EGBERT: Well, Unitarian Universalists basically believe in autonomy. They believe the individual has a right to be responsible to themselves. Collectively, in the General Assembly in 1988, the Unitarian Universalists voted to approve the idea of physician assistance in hastening death.

MARTIN: Now, I think it's worth mentioning at this point that you've paid a price for your advocacy and your work in this area. You've been arrested more than once. You were tried in one state and those charges were dismissed or you were acquitted, but there's still a case pending against you. And that, when you were arrested, you had been an assistant visiting professor at Johns Hopkins and you lost that position because of the arrests.

And so I'm just interested in the fact that you're willing to continue to face these issues, to advocate for this work and to do this work and I wonder why that is.

EGBERT: Well, the patients need this work. Dr. Kevorkian could tell you that. The patients are very appreciative of this and so are a lot of other people who have had relatives who have not had this care.

I hear story after story after story of people who have a relative who couldn't get this, who didn't get proper pain care or the pain care was so much that they were unconscious. So I think that the idea of the patients saying they really want this. If you have - yourself - you get a horrible disease and you're suffering all the time and the doctors are doing a wonderful job, but it just doesn't seem to work. That's what? 1 percent or 2 percent of the population. So 98 percent are taken care of very nicely, but we are interested in is that occasional 1 or 2 percent who are not.

In Oregon, for example, where this is legal - in Oregon, less than 1 percent of the people actually use the service. Less than 1 percent of those who die.

MARTIN: We're speaking with Dr. Lawrence Egbert. He's the former medical director of the Final Exit Network. That's a membership organization, actually, that helps people end their lives, especially when they are experiencing persistent and debilitating illness. He was profiled in the latest issue of the Washington Post Magazine.

And you mentioned Dr. Kevorkian. The article compares you to him, but you have some differences of opinion with his approach. Can you tell us what they were?

EGBERT: He was a little more flagrant than I am. I tend to be quiet and he tended to be noisy. He also was a musician and a considerably better musician than I am. What he would do, for example - he would help a patient very similarly to us. The patient would apply, ask him and talk with him and he would then sometimes say, I don't want to do this, which we do, also. So he - no. I don't want to be part of this, which he did.

But I had good contact with a Unitarian minister in Ann Arbor who had a parishioner work with Kevorkian and he found him incredibly careful and thorough. I would like to think the same for us.

MARTIN: Well, you know, obviously, we don't have the time to resolve all the profound, you know, philosophical issues that this whole question raises, but I did want to ask. This week, you know, we're ending a week that began with the March for Life. That's an annual event to protest the Supreme Court's Roe v. Wade decision that legalized abortion and this raises - in this country - and it raises, you know, similar questions.

And so I'd just like to ask in just the minute and a half that we have left. Do you envision a time when we won't be arguing over these issues, when this country will have sort of settled itself on this question, you know, one way or the other?

EGBERT: I think there will always be people who are fundamentalists in a religious point of view will be opposed. However, I think there's very real progress. More and more people are saying, this is a reasonable thing. For example, right now, Massachusetts and Vermont are working on this very hard - excuse me - very hard to pass a law to say they would be like Oregon.

MARTIN: And you feel - let's say, if you and I were to get together 10 or 15 or 20 years from now, what is your prognosis? You think that this assisted suicide will be legal in more places than it is now?

EGBERT: I think hastening death will be more legal. Yes.

MARTIN: Because?

EGBERT: Because I think people want it. People want to say that - I'm me and I don't want to suffer more than I can handle. Sometimes, I can handle the suffering and, sometimes, I can't.

MARTIN: Do you ever think that you might be wrong?

EGBERT: Oh, yeah.

MARTIN: You do?

EGBERT: Oh, sure. I know - also, I think about something like referring to the Nazis, the slippery slope, and this might progress to something where people will be asked to. You talk to some - there's a group called Not Dead Yet. They will tell you this very clearly, that they're worried that we will expand this so much that we'll try and remove them. Personally, I think that loses the basic idea and that is the idea of choice.

MARTIN: OK. Thank you so much, Dr. Egbert. Dr. Lawrence Egbert is a retired anesthesiologist. He's also the former medical director of the Final Exit Network. He was profiled in this week's Washington Post Magazine. The piece is titled, "The End Is Near," and he came to speak with us in Washington, D.C.

Dr. Egbert, thank you so much for joining us.

EGBERT: Thank you.

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