Vol. 20 No. 10 - Published by the Freedom From Religion Foundation, Inc. -
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Physician-Assisted Dying: A Report From Oregon
This speech was delivered at the 26th annual convention of the Freedom From Religion Foundation at the Washington Court Hotel-Capitol Hill, Washington, D.C., on Oct. 12, 2003.
© 2003 Betty Rollin
By Betty Rollin
I'm really honored to be here. At first I was a little puzzled by Annie Laurie's asking me to speak to you about physician-assisted dying. And then I realized it makes perfect sense, because in a way the movement I'm involved with has everything to do with rational behavior and common sense, and, of course, that's what you're into. So there is a relationship there.
Before I tell you what's going on in Oregon, I would like to explain to you how I got into this. As is so often the case, I got involved because of a personal experience. I helped my mother die. She had ovarian cancer, and she was dying, but in her view not fast enough. People who are in this situation are often accused by the opposition of being depressed. My mother was not depressed. Her feeling was, she'd had a wonderful life, and now it was over; there was nothing ahead but pain and suffering. She was very rational, she saw no sense in continuing, and I understood her feeling that way.
I was trying to remember when it first occurred to me that what my mother went through, and what we went through together, wasn't unique. I guess it was when my mother, very near to the end of life, looked up at me and said, "What do other people do who don't have children?"
I wasn't thinking about other people at that point. I was totally focused on her, and I didn't really know about other terminally ill people who wanted out of life. But I know about them now. This movement, this wish on the part of so many of us to curtail the suffering of terminally ill people--because that's what this is about, it's about suffering, an overused word, but it's exactly the right word when it's you or someone you love--has come to the attention of a lot more people than in the past.
So many of us have been through or have had some kind of an experience, and we've learned many bitter lessons. I'll tell you what I've learned. I've learned that even when pain control is at its best, which it usually isn't, it doesn't always work for everyone. And there are no great remedies for nausea. And there are certain ways the body can fall apart that are simply unbearable for the people whose body it is that's falling apart.
I've learned it can be very hard to die. People often try and fail, or they try to help their loved ones and they fail. I get letters from those people. That, alone, is a good reason to have legal physician-assisted suicide, because it's not something that amateurs should be doing.
Just because it happened to work in our family doesn't matter. It's not good policy to have people so desperate to die that they're forced to ask their children or their mates to help them out of life. Such people are amateurs, and, to put it crudely, they often muck it up. That can be terrible, and even if the person dies, there can be psychological damage. I happened to have a great relationship with my mother. Well, not everyone who helps a loved one to die has a great relationship, and if you help that person to die, you might suffer psychologically. It's just not something that family members should be doing.
I also get mail from people who couldn't help, whose loved ones asked for help and they simply couldn't do it, which is perfectly reasonable. They didn't know how, they were afraid of the illegality, and those people feel guilty too.
So it happened to work for us, but I'd really like to point out we had an awful time. We had no guidance except for a doctor who was willing to give us a bit of advice on the telephone. I'm a reporter in New York, I know many people, I know lots of doctors, I just thought, "Well, somebody just has to whisper in my ear what we need to do, what she needs to take." Nobody was willing to do that. And I can't blame them. It's illegal. People were fearful, and also at this time, the entire notion of assisted dying was completely in the closet.
I've learned about something else, and I've seen it both in my mother and others. It's the thing that really keeps me in this movement. In addition to whatever physical horror the person is going through near the end of life, is the terror they feel. There have been studies on the terror people feel, which is not about dying, it's about suffering. There is reason to be terrified. Especially if people are alone, they're very fearful of suffering.
And that brings me to Oregon, the only state in America where it is legal for a physician to help a patient die. Here's what that means. It means a mentally competent, terminally ill adult Oregon resident--you can't just travel to Oregon and die--who has been given a prognosis of six months or less to live by two licensed physicians, may get help to die.
The help is merely a prescription. A lot of people don't understand this. Doctors are not injecting patients. It's a prescription for a liquid that's easy to swallow--my poor mother had to down all of these pills--and there are other safeguards in Oregon. The safeguards are important. There is a waiting period. The patient has to put his or her request in writing as well as the oral declaration, etc.
The law has been in place for about six years now, and there have been some surprises. The big surprise to opponents and proponents alike is how absolutely wonderfully this law has worked. The opponents have been looking for a mishap and it just hasn't happened. The other surprise is how few assisted deaths there have been. After the last count, which was made after five years, there was a total of 129 deaths.
Proponents of the initiative never thought there'd be a rush to die. The opponents--the Catholic Church and others--said, "Oregon's going to become a killing state; people are going to be dying like crazy in Oregon with this thing." Well, that did not happen.
In the first place, most people cling to life. The natural thing is to cling to life. Usually people do that no matter how much they're suffering. But if that is so, one might ask, then why bother? If this is going to benefit so few people, and so few people take advantage of the law, then why are we struggling to get this going in other states? Which we certainly are.
Well, the answer to that question, at least in my view, is there is no way, statistically, to measure peace of mind, no way to quantify the death of terror. But here's a guess: that for every one of the 129 people who have used physician-assisted suicide in Oregon over the past six years, tens of thousands more have had their fears quieted just knowing the assistance would be there if they wanted it. I've had cancer a few times. I, myself, would want to know that should things come to such a pass, there would be help if I wanted it. Very likely, most people are not going to do this, including myself. But to know you can do it: that's what the fight for legality is about.
I learned a lot about all this when I was in Oregon about a year ago, writing an article about how the law is being implemented. I interviewed people who had passed all the safeguards and who had requested legal medication and received it. The people I interviewed were very different from each other but had two things in common: gratitude and peace of mind.
I interviewed one Richard Holmes who was a hoot. He had girly magazines on his coffee table and a framed picture of his hospice nurse on his mantelpiece. He got a big kick out of telling me that at his last birthday party--which turned out to be his last birthday--he had invited his ex-wife and her boyfriend and their children and they all had a great time. Richard died a few months after our interview, without using the medication, but I could see it meant everything to him to have it. When we talked, he told me with a big smile that he kept it in the basement where it was nice and cool.
I interviewed Laura Meirndorf, a big blowsy no-nonsense woman who had been a logger. Oregon's an amazing place! Women loggers! It blew my mind. Laura lived in a small dark house with a trailer attached in Scotts Mills, population 300. She had the medication, she pointed out to me--and I didn't ask, this was something people just couldn't wait to tell me--that her medication was on top of her fridge where she said she could keep an eye on it every day. I called her daughter, Shirley, a few months ago and she told me her mother had taken the medication. Apparently, she took it on a day when she wasn't feeling that horrible, so she got her neighbor to take her for a last look at the lake. What happened was, her mother was late getting back. They got a flat tire, which Laura thought was pretty funny, that on her last day of life the blankety-blank tire on the pick-up would go.
As she was telling her daughter about this, Shirley thought, "Well, if she's still laughing, then maybe she doesn't want to do this, maybe she doesn't want to take the drug." But she did, in her own style. Apparently she took a swallow of medication and looked at her daughter and said, "This tastes like shit. Give me a shot of Kahlua." (You can't make this stuff up.) She took a swig of Kahlua, downed the rest of the medication, and within seven minutes she was out.
Did I mention that before she died, Laura had some choice things to say about Attorney General Ashcroft?
In a weird way, Laura reminded me of my mother. My mother was a totally different type. My mother wouldn't go to the grocery store without a full make-up, and I think the only four-letter word I ever heard her say was "food." But she had Laura's moxie. She had Laura's insistence on remaining herself and remaining in charge of herself. This they had in common.
When my mother knew I had found a way out for her-- not easy in 1983 before anyone was even talking about this issue publicly--a calm came over her that was strange. Her sister, who didn't know what we were plotting, thought she was getting well, and she said to me: "There's something odd happening to your mother. She seems okay. Can she be getting better?"
I could have replied, "Yes," because she had become herself again. With terror gone, in spite of her suffering, she was her old self. I could tell because she began bossing me around again. Less than 24 hours before she died, she said to me, "In the closet, there is this awful-looking hat, I don't know what possessed me. I bought in Bloomingdale's. Don't forget to return it."
I remember thinking, the way Laura Meirndorf's daughter did, she's so herself. Does she really want to do this? Just before she was about to take the pills, I asked her: "Mother, do you really want to do this?" She looked at me as if I'd lost my mind, and said something quite unforgettable: "Next to the happiness of my children, I want to die more than anything else in the world."
The success of Oregon makes it harder than ever to understand the opposition. It proves the point that when people are of a certain mind, a little thing like evidence to the contrary will do nothing to change it. What is going on in Oregon is about allowing dying patients to hasten their deaths. None of these people is going to do anything but die. But they want to choose when to die--with dignity. People in Oregon who are not even sick are comforted to live in a state which grants them this kind of insurance.
I think my mother was unusual in that she went through with it. But as I said, this is a control issue. It's the power of knowing you can die when you want to.
Back to Oregon, and enter Attorney General John Ashcroft. The attorney general, as you may know, has boldly tried to undo the Oregon law. His plan is to penalize doctors anywhere in the nation, including Oregon, who prescribe lethal drugs for patients. He made his move shortly after 9/11, when perhaps he thought no one would notice.
We noticed. And most of all, the voters of Oregon noticed. Because the voters of Oregon decided, and have voted, not once, but twice on this issue. They were outraged. What's so ironic is here is this right-wing, states' rights guy coming in as telling Oregon voters that what their state had voted on twice wasn't any good.
Not only that he was going to undo the physician-assisted suicide law, but if he got his way, the DEA (Drug Enforcement Administration) would begin to monitor doctors as though they were drug dealers. The inevitable result would be that physicians all over the country would become more afraid than they already are to treat pain. Say they gave a patient morphine just to relieve pain, and the patient happened to die. They could be prosecuted. Now isn't that a great situation? The inevitable result is people who are suffering would have doctors who are afraid to prescribe enough pain medication. Ashcroft lost the first round in the courts, by the way. But the case is not yet resolved.
It is so purely ironic that someone like John Ashcroft is religious, and that his religion might be behind his actions. I think, on some level, those who oppose this movement are simply ignorant of what this law really means. They might actually be for it if they understood it. But they don't. They don't know how the law works, they don't know about the safeguards, they don't know about the peace-of-mind issue. I guess for some people it's also a failure of imagination. There are people who've hardly ever been sick, maybe had a stomachache once after eating too much, and they don't get it. They don't understand what it feels like to be in the shoes, or I should say, in the beds of some of these people. What it feels like to have your body completely fall apart.
I suppose these are the people for whom suffering is just a word. Most of all they don't get that they could be there themselves.
The next state where the death-with-dignity law is closest to happening, maybe in 2004, in Vermont. When that battle heats up, I hope you'll be with us. I know you have your own issue which obviously keeps you busy, but in your free moments, perhaps you might consider joining us on this issue. It really affects us all.
What organization in Oregon are you with?
I'm with an organization called Death With Dignity National Center. We have just merged with the Oregon Death With Dignity people, so we're working together to move into other states. On the web it's www.deathwithdignity.org.
How much does this go on, law or no law, in other places?
That's a really good question, because a lot of people say, "Well, you don't really need a law. You find a doctor who's a good guy. He'll help you." Well, there are some heroic physicians who will give this kind of help. But they are taking a big chance. They are breaking the law, and you don't really want them to have to do that. Also, for every physician who is kind and brave enough to help someone die, there are many, many more who will not do it. Now in Oregon there are a lot of physicians who won't do this, by the way, but there are enough who will do it. Yes, of course, it goes on, and it has always gone on. But it's nothing you can count on.
You mentioned there've been 129 people who ended their lives with medication, but at the same time they keep them in their refrigerator and their basement. Do they keep track of how many people have these medications?
Oh, yes. Everything is kept track of. The Oregon health department keeps very careful note. Interestingly, there are a lot more prescriptions filled than are used, and I think that's just fine. These are the people who really are afraid and who want it there. They had that comfort at the end of their lives.
Could you comment on the constituencies who oppose death with dignity?
Yes. The Catholic Church, number one. There was a referendum--they nearly legalized this in Maine--and in the zero hour the Catholic Church came in with a very well-funded campaign, "Your doctor's gonna kill you. Is that what you want?" So number one, the Catholic Church. Other religious groups, too. Of course, the Catholic Church is a little busy now with their other problems. We hope they'll be distracted. But mainly, it's religious groups. To be fair, it's conservatives, but not all conservatives. I wrote a piece about this for the op-ed page of the Wall Street Journal, of all places, and they saw it as a libertarian issue, that nobody has a right to tell you what to do. So it's not just a liberal thing at all. But certainly the religious right is the major opponent. So number one, the political hierarchy of the Catholic Church--the Council of Bishops.
What has become of Dr. Kevorkian?
He is in the clink. Dr. Kevorkian brought this issue to the attention of the public. We are grateful to him for that. That is all we are grateful for, however. Dr. Kevorkian is a loner. He never wanted to join the movement, he never was interested in the legalization. He is in prison because he killed somebody. If this thing is going to work, you can't do that. You have to do it the way they're doing it in Oregon. There have to be safeguards. It has to be about the person doing it themselves, not about the doctor doing it. He just sort of went off on his own. There's a lot of disagreement in the movement about him, but most of us are critical of him, frankly.
Are you a member of the Hemlock Society?
No, I'm a member of Death With Dignity, but we're friends with the Hemlock Society, which is no longer called Hemlock Society because they had too much grief with that. They're now called End Of Life Choices.
What are the drugs of choice?
Body weight has something to do with it. Barbituates, Nembutol is mainly what they use in Oregon, but it's in liquid form so it's easy to swallow. A lot of very sick people can't swallow.
People often ask me in those last moments with my mother, "Were you grieving?" No, I wasn't grieving, I was worried, my husband and I, because we thought, "Is she going to be able to get these pills down? If she doesn't, what then?" We were terrified this wouldn't work and that she might wind up suffering even more.
Can't pain treatment and chemotherapy alleviate most of the suffering?
Very often, what it really boils down to, is that often patients get treated beyond the point where it makes any sense to be treated. They're not going to live, and the treatment just makes them suffer. There are patients who say "No more!" and want a kind of decent end of life. Physicians tend to treat--I mean, that's what they're taught to do. So often the physicians will treat and medicate even if there's no point, very often. And patients go along. They think, "Well, if they're treating me there must be hope."
Could you mention what Hospice is?
Hospice is a wonderful organization. In Hospice, if you are dying, and you have a six-month prognosis, Hospice will keep you comfortable. Hospice is just the opposite of treating. Hospice is for people who say, "I know I'm at the end, I want to be comfortable." That's the business of Hospice, and they do it very well.
Do you know the position of physicians at the American Medical Association on this?
Yes. Of course the American Medical Association is against this. The AMA, however, represents only one-third of all doctors in the country and, like any association, tends to be more conservative than the profession as a whole. Many compassionate doctors support Death With Dignity laws.
Tell us more about the safeguards, and also how long of a wait there is.
No sooner than 15 days after the first oral request, the person must once again request his or her primary care physician to assist him or her in using the law. After the person is qualified and has made their first oral request for assistance, the person must sign a written request for assistance that has the signatures of two persons who witnessed the person's signature. The written request must be delivered to the person's primary care physician. The attending physician may write the prescription for the medication no sooner than 48 hours after the patient has delivered the written request. All of the dates on which the requests are made must be noted on the patient's chart, and the prescribing and consulting physicians and the pharmacist who fills the prescription must complete and mail approved compliance forms to the Oregon Health Division. This is not a casual thing. And the patient must be able to self-administer the medication.
You said you have to be able to give this to yourself. What about people who can't give it to themselves?
Well, that's part of the problem. The question is, what if you have ALS, Lou Gehrig's disease, and you can not swallow? That was the case with the patient Dr. Kevorkian helped. Well, that is a tragic situation with regard to this law, because the law does not cover people with ALS. If people with ALS were covered, then it would be legal for a doctor to kill the patient, and that opens a legal can of worms. I hope someday that we can do this. It's terrible that people with ALS cannot get help. So I would hope this is down the road, but it's not going to happen soon. Self-administration of the medication is the ultimate safeguard and is what distinguishes assisted dying from euthanasia. For people who can not self-administer, the law is problematic. The law that exists, however, does help most terminally-ill people who request assistance.
What has happened in Holland and Belgium?
I'm not an expert on the international scene today. In Holland they've allowed assisted dying for quite a while but it's a little bit different. They practice euthanasia as well as assisted suicide. That is, in Holland, under certain circumstances, a physician can kill a patient who wants to die. That's not going to happen in this country. It has been so hard just to get this mild law in Oregon passed, and so far, it's still only this one state. And all it is is a prescription. So sometimes people will say, "The law doesn't go far enough." Yeah, I agree, but look at what a struggle it has been. I don't know about Belgium. I think there's a law in Switzerland where you can actually go to Switzerland and if you qualify, you can get help.
Betty Rollin is a contributing correspondent for NBC news. Her special reports for "Nightly News" included a series on the Native Americans of Pine Ridge, S.D., which won both the DuPont and Emmy awards. She also contributes reports for PBS's "Religion and Ethics Newsweekly." She has authored six books, including First You Cry, about her breast cancer and mastectomy (1976, recently republished on the author's 25th "cancer anniversary"), which was made into a TV movie starring Mary Tyler Moore. Her poignant bestseller Last Wish (1985, republished recently) raised consciousness about end-of-life issues,, describes the suicide of her terminally ill mother. It was made into a TV movie starring Patty Duke and Maureen Stapleton and has been published in 18 countries. She first joined NBC in 1972, and created and anchored a series of NBC News Special programs titled "Women Like Us." Human interest stories remain her focus as a correspondent. She was an associate feature editor and staff writer for Vogue, and senior editor for Look, and has written for many national magazines. She is a graduate of Fieldston Ethical Culture School in Riverdale, New York, and Sarah Lawrence College. She and her husband, Dr. Harold M. Edwards, a mathematician, live in Manhattan.
Excerpt: First You Cry
Excerpt, First You Cry, by Betty Rollin (1976, reprinted 2000).
"I stopped believing in God at about the same time I stopped believing in Pinocchio, when I was about eight. It upset my mother because her father was an Orthodox rabbi. My mother blamed herself for not emphasizing religion enough and for not keeping a kosher house. (She couldn't do that, she said, because the housekeeper was a German Catholic and didn't know how. Even at the time, that struck me as a limp excuse.) Later I came to think that one reason I never had much truck with religion was that my mother, in spite of her carryings-on, didn't either. Mother was too hardheaded for that sort of thing, and so was her hardheaded daughter. My father was both more religious and more tribal. I expect that was owing to his experiences in Russian pogroms. When I was little he used to tell me stories about how he and his brothers and sisters hid under beds when the Cossacks came to the house of the Jews. The Cossacks would thrust their swords into the mattresses; my father told me that once, when he was under the bed, the tip of the sword came through right next to his head. A rich relative got the family out, but such experiences stick.
. . . I thought about all this in the hospital because I knew that disasters often made people religious. After all, had I not sort of prayed the weekend before?
One hears about people who "turn to God" when the jig is up. Notwithstanding my one prayer, that didn't seem to be happening to me."
December 2003 Excerpts