Measure 16: Oregon Confronts Death and Dying; No. 3; Michael Vernon

On the evening of September 23, Michael Vernon died. He was with his family. His death certificate states that he died from AIDS-related causes. Michael Vernon was an activist for Oregon's assisted-suicide law. In the last year of his life, Vernon campaigned for an initiative that allows physicians to prescribe lethal drugs to dying patients. He then attempted to get an exemption from the court injunction against Ballot Measure 16. Michael Vernon often said, he felt he had the right to determine the time and manner of his own death. As part of OPB's series on Death and Dying, Colin Fogarty spoke to Vernon several times about life, death and assisted suicide and files this report. [Fogarty] Michael Vernon looked you straight in the eyes. With a relaxed demeanor, he spoke openly and honestly about himself - even with people he just met. Vernon remembered the day he was diagnosed with AIDS. December 6th, 1991. [Vernon] I had seen some spots on my feet and decided that I knew what was going on.

So I went to my doctor and I said, "you know, you need to look at this." And I said, "you're not going to be very happy." And she took one look and she says, "Yeah, you're right, I'm not happy at all." [Fogarty] The news was devastating. [Fogarty] About three weeks later, Vernon called his family and friends to tell them about his illness. It was important to him that it be out in the open, so he could control what he called dirty little secrets. Then, he decided he wanted to control the time and manner of his death. Vernon had known people who had died of AIDS, and had cared for elderly, dying patients who had lost that control. Eventually, he acquired the means to end his life: a lethal dose of drugs. In the meantime, Vernon made what he called a "contract" with his disease. [Vernon] I would face anything that the disease threw at me, as long as it allowed me to do it with dignity, grace and a sense of humor. And I have always stuck to that, and maintained to that. [Fogarty] Michael Vernon grew up in Twin Falls, Idaho. After living in Washington, D.C.

for several years, he moved to Portland in 1972. He held a number of jobs before establishing a group home in 1988, for elderly patients. Carmen Wells became a friend of Vernon's when they worked together 18 years ago. [Wells] So it seemed like, after a few years headed one direction, he'd say, "Well, I've done that now." And something else would take his interest and he'd go a different direction. That's one of the reasons I think I see him as somebody who...he didn't wait for things to happen. He took charge and made things happen when he wanted a change. And that's why it's perfectly logical that he'd want the option of being in charge of the way he left the world, too. [Fogarty] After he was diagnosed with AIDS, Vernon joined a support group of HIV-positive gay men. Through the group, Vernon learned that Oregon Right to Die was looking for terminally ill people to help with their campaign to legalize assisted suicide. After a great deal of thought, Vernon decided to volunteer for the campaign.

It was a successful effort. Fifty-one percent of Oregon voters approved Ballot Measure 16 in November of 1994. Around Thanksgiving, Vernon came down with chronic diarrhea caused by cryptosporidium, a digestive virus that American tourists often get in third world countries. For healthy people, cryptosporidia [sic] usually clears up in about two weeks. But with a damaged immune system like Vernon's, the condition lingered. [Vernon] And I have a real hard time taking medications that will help to eradicate the cryptosporidia [sic] - makes pain in my stomach, so I have to be real careful about that. But I have just come to the point of realizing that you're either going to take the medicines and be in pain, or you're not going to be around much longer. And I choose to take the medicines and be in pain a little bit. [Fogarty] On December 7th, Federal District Court Judge Michael Hogan imposed a temporary restraining order that blocked Measure 16 from taking effect. Vernon was interviewed on OPB Radio one week later.

[Vernon] Whose life is it anyway? Does it belong to the federal government? I don't think so. It's never belonged to the federal government before. Why would I want to do that now? Certainly doesn't belong in the hands of my doctor because, you know, my life has always been my own and I've always made my own decisions. I certainly wouldn't leave those final decisions up to a doctor or the federal government. [Fogarty] July 1995, Vernon thought he was healthy enough to travel to Idaho for a family reunion. But at the last minute, his illness took a turn for the worse, forcing him to cancel the trip and remain in bed. His parents and sisters came to Portland to visit him. During their visit, they agreed to come to his HIV support group. [Vernon] We got to do a lot of really kind of deep feeling work, and it was very nice, because I've wanted that for about the past 25 years and never really got it. Well, it's odd when something like this happens to you - how your lives change. [Fogarty] Throughout his life, Vernon's homosexuality and political beliefs often came in conflict with his parents' Christian beliefs, and for a while, so

did his desire to commit suicide. This is one of the issues that we've discussed at great length, and they have come to the point of view that it is my life, and I do have to decide for myself what I'm going to do. So, they don't pressure me at all not to do it. But I know that they wouldn't choose it for themselves. [Fogarty] In his final months, Vernon remained intent on seeing Measure 16 implemented. Under the law, he would have had to request aid in dying three times, twice orally and once by filling out a written form. Two doctors would have had to concur that he had six months to live. One of the physicians could prescribe a lethal dose of drugs, but Vernon would have to take the drugs himself. In preparation for the legal challenge against the injunction on Measure 16, he tried to find two physicians and one pharmacist to go through the process laid out in the initiative. He spent hours calling doctors' offices. [Vernon] "OK, thank you." This has been so hard to find doctors that will participate.

Druggists who will participate. And they're all going on vacation. [Woman] Put that on your pants instead? [Vernon] Sure, how about just right down there on my belt? Yeah, that'll be fine. [Woman] All right. (unintelligible) Does that gouge you, though? [Vernon] No, it's fine. It's fine. [Fogarty] On a sunny day in late July, Vernon held a news conference to announce his intention to challenge the court injunction on Measure 16. He looked pale and walked stiffly, hiding the enormous effort it took. He sipped bottled water to offset the dehydration caused by the chronic diarrhea. Judge Hogan has taken too long to make a decision on the constitutionality of Measure 16, Vernon said. He hoped to pressure Hogan to lift the injunction. [Vernon] A lot of thought has been given to this. This is not something that came up overnight. But my health situation put me in a situation where I needed to deal with it and think about it.

I have two doctors - one who is ready to act as my first, one who is ready to act as my second, and a pharmacist who is ready to write the prescription. We will do everything to follow, to the letter of the law, Measure 16. [Fogarty] August 3rd, 1995, Judge Hogan ruled Measure 16 unconstitutional. Hogan wrote that the law doesn't provide adequate safeguards to protect dying people who are clinically depressed, from assisted suicide. Vernon took the ruling personally. [Vernon] He has said that I am mentally incompetent, that all people that are terminally ill in the state of Oregon are mentally incompetent. And that is exactly what terminally ill people are trying to get away from. We don't want to be treated differently than other people. And I'd like to ask Judge Hogan ,"How in the heck did he get the credentials to be a psychiatrist?" [Fogarty] The decision was immediately appealed to the 9th Circuit Court of Appeals, in San Francisco. In his ruling, Hogan wrote that since Measure 16 was unconstitutional,

Michael Vernon's challenge to the injunction was moot. The appeals court agreed. Vernon said the decision simply pushed him and other dying people, in his words, into the closet. [Vernon] I am a very, very honorable man and this makes me be dishonorable, and I don't like my government for it. [Fogarty] As Vernon's health deteriorated, he gave notice to the families of the elderly clients living in his home that he wasn't going to be able to take care of them for much longer. As he met with one of the families one day, he got dizzy and soon had to be taken to the hospital. There, he learned that the AIDS virus had penetrated his blood-brain barrier. That accounted for his dizzy spells and hallucinations. Vernon's doctors worried about a possible infection in his permanent IV. While he was at the hospital, he described how he was feeling. [Vernon] Weak. Uh. Tired. I don't know. I don't know how to explain it.

I'm wondering, you know, how close the end is. [Fogarty] Vernon went home from the hospital at the beginning of September. Two weeks later, he called to say, if there was going to be another interview, it had better happen soon. We talked for the last time on September 20th. [Vernon] And I'm starting to, uh, pass green feces, which is not a good sign - I know the green feces sign. So, I would imagine that it's probably not more than a couple of days. [Fogarty] Vernon said he wasn't looking forward to death, but he had accepted it. He was happy to have his mother and father in the house taking care of him. [Vernon] It's very nice. It's very reminiscent back to the days of my childhood when, if I vomited, my mother was always there to put her hand on my forehead.

And she does that again sometimes. It's been very nice. [Fogarty] In the final days of his life, Vernon hoped the tenor of the assisted suicide debate would tone down. And that both sides of the issue would discuss it productively. He said his priorities had changed. [Vernon] Maybe this is part of the process of shedding, shedding that stuff, but none of it's important anymore. So I won't get the house painted and I won't get the sidewalk laid. So what? It'll be somebody else's problem. Let them deal with it. [Fogarty] Vernon said he'd like to die naturally. [Vernon] I would rather go on my own, but if if the time comes when the pain is so great that I feel the need to do that, I'm certainly prepared. [Fogarty] Throughout his illness, Michael Vernon was in no hurry to die. He never altered his desire for the right to control the time and manner of

his death. He received consistent counseling about his feelings and made amends with all those close to him. He was not clinically depressed. Perhaps Ballot Measure 16 was written with people like Michael Vernon in mind, but he was unique. Few are as steadfast, as emotionally honest, and as stable. Only a chosen few know exactly how he died on September 23, 1995. As he wished, he was cremated. Friends and family will have a wake for him in Idaho, in the spring. [Music] For music at his wake, Vernon hoped if his family could handle it, a favorite of his would be played: Howard Hanson's "Romantic" symphony. At the end of the gathering, his ashes will be scattered in the Snake River. [Vernon] I started out in Twin Falls. Finished up in Oregon, might as well go back to Twin Falls

and start the trip one more time. And end up back in Oregon, [clears throat] and then on out to sea. [Fogarty] For OPB, I'm Colin Fogarty. [New interviewer] When he was 14 years old, Lonny Shavelson's mother asked him to help her commit suicide. She was ailing, but not terminally ill. Shavelson knew better than to help his mother die. But that experience drove him to explore the issues facing families and friends of dying people. The result was a book titled A Chosen Death: The Dying Confront Assisted Suicide. Shavelson spoke with me about his experiences. One of the people whose stories you tell is Pierre Nadot, and I wondered if you could describe his experience with AIDS, and how he confronted this idea of assisted suicide

and dealt with it. [Shavelson] Well, in some ways, reading this story about Michael Vernon, which you just talked about, reminded me very much of Pierre. Pierre was a gay man who had AIDS. When he first found out that he had AIDS, he became very depressed. And before he was literally very sick, he took advantage of the fact that he was in the hospital. He had a kidney infection actually at the time, which was certainly far from fatal. He wasn't suffering very much. He was still able to walk and talk, didn't have significant pain, but he knew what might be ahead. And he was very, very frightened of that. Pierre asked a number of his friends, because he happened to have an intravenous - an IV line attached in the hospital, to say "look, let me take advantage of the moment. I may not be able to do this later and I may suffer. Please kill me now." Because he was so afraid of the possibility that he might not have an out later. Fortunately, his friends--as physicians I think these days would--had the wisdom to say, no, Peter, you're not that sick - you're just very, very depressed. And they refused to help him. He says at that time that, had the law-- and I asked him this later on--that had there been a law that he would know that if things got worse later on, that he would be able to ask for an overdose. Only if things got

worse, that he never would have made that request for an early death in the first place. That the actual fact that it was illegal was what was making him desire to hasten his death so much. What then happened, of course, was the Pierre--like what sounds like Michael Vernon--discovered a lot of things about life that really made him push on. And I found this repeatedly after talking to family after family after family-- we're talking about 48 women with breast cancer; another one with brain cancer; we're not just talking about AIDS here--who made the decision that the first thing they're going to do is, they're going to struggle as hard as they possibly can to live. But what made their lives a bit more pleasant while they were doing that was the knowledge that if, when the time came, the suffering would become severe, they all had arranged that they would have some way out. And what I was watching was the effect that, psychologically, their depression lifted a bit and in some cases completely as they went through their lives, were able to really fight to stay alive, knowing that the chance would be there, when and if they wanted it to have help to die, if the suffering became more severe. Pierre Nadot made a mistake that fortunately no one listened to. Eight months later, he was still alive. Eventually, he wound up dying a natural death,

without that much discomfort. [Fogarty] You allude to sort of a network of people, particularly in the gay community, that are ready to help people die. And yet, you say that Mr. Nadot's friends tried to keep him from committing suicide when he was depressed. Maybe you can explore a little bit further, the dynamics at work in that community that encompass both of those approaches. [Shavelson] Well, I think it's a very interesting point. The gay community, without any strict laws-- and like, if you look at the Oregon law, there are rules that say if a person is depressed, you know, that that they should have psychiatric consultation first; there are rules that say they have to be two or three requests-- well, the gay community is following no rules and no laws. Nobody's prosecuting them. And there's an amazing underground of people who literally make available medications for those who are suffering. They're usually medications that have been gathered from other patients who didn't use them and passed on. And there's a tremendous hidden underground where this is happening in sort of a model system of 'how might it work were it legal to offer someone assistance in hastening their death when the time came'. And what I found was pretty amazing - I followed this with four people and I listened to stories after stories after stories, was that they were following pretty good a system of unwritten rules. But the unwritten rules were there, such as in Pierre's case, when someone

said to him, you know, he made the request of three different friends to help him die at that moment. Every last one of them said, 'no, this isn't the time. You're not ready for this. You're hardly even sick. You're just depressed'. And I think that, you know, we have to reason that if - that if laypeople in the gay community can make this judgment, it would certainly be reasonable to assume that if a good law was in place and reasonable physicians were making the same judgments, that they would follow a similar pattern. There's no desire on anybody's part to suddenly kill somebody just because they're depressed. I haven't seen that. I haven't seen an example of it. And I think that we can take a lesson from the unwritten laws of the gay community and now see that with written laws that the chance of abuse is not nonexistent-- there's never a nonexistent chance of abuse--but it's very minimal. [Interviewer] And yet, you do write about one man who sought out freelance euthanasia. What is that? [Shavelson] Well, that's an interesting example. In a non-community, this was an individual who, as many individuals, a woman, who I've named Sarah, who was a person who had an experience in her life, where with a very, very close friend and a very understood circumstances, she helped a friend who was suffering greatly from a neurologic disease

where she was completely bedridden. She was unable to move, and she was deteriorating rapidly, unable to swallow and unable to breathe finally. Where, this friend knew that she was going to have a hard death almost under any circumstances. And this woman, Sarah, helped her friend to die with an overdose of medication that she obtained. Well, it turned out that Sarah had an unusual reaction and and reacted to this as an intensely moving and wonderful moment in the relationship with her friend Naomi, who had died. And Sarah decided that she should do more of this. And what I observed, and then I participated and watched and was, with Sarah, meaning a man named Jean who wasn't ready for death, who had had a single stroke and was very depressed about his stroke and worried that he might have another one. And watched Sarah--literally, because she had no guidance; she didn't have to get a second opinion. All the way the laws are written, that now, will provide some safeguards--Sarah didn't follow, though. She was a freelance euthanasist [sic]. She made it known that she was willing to help people. In this case, she went over to Jean's house and after the fourth meeting with him in short conversations, she decided she would assist in his death.

She gave him the pills to take and put a plastic bag over his head, and he died. What I find amazing about that is that we talk about the risk of abuse. Well, as far as I'm concerned, what I saw in my two years of investigating this is that while it's going on underground, and it has to be hidden and nobody's asking questions and nobody is doing any checking, is that there's tremendous amount of abuse going on by people who are confused. I think Sarah was a, if anything, possibly well-intentioned but very confused woman who didn't understand the complexity of the issues of assisted suicide in hastening death. [Fogarty] And it sounds like that's the kind of story that could frighten people when they confront this issue of assisted suicide. They might think that those abuses would be even more common if it was all out in the open and if the laws were there. Do you think there are adequate protections, perhaps in Oregon's law, and the other proposals that are out there right now? [Shavelson] Well, I think that, you know, any law that's written is going to have some problems with it. In all due, I think the Oregon law is a particularly good law in that sense, is that it gets very, very close to having as good as - as many protections as you can possibly have. There are always going to be some exceptions. What I have to say is we're weighing, you

know, a balance here. If the Oregon law, let's say, does not get enacted by the courts and is defeated by the courts, then what will happen is that the process will continue to go on, on the ground. I can guarantee you from my own experience that there are tremendous numbers of abuses going on while this happens with families underground - so that there's no checks and balances, there are no consultations. I myself got into a very bad situation with one person, who I followed for a long period of time, who really believed that it was her time for death. Who had worked through all the problems, who as far as anyone can tell, was 24 to 48 hours from death and suffering greatly, in spite of the best of medical care and hospice care and all the rest, who took an overdose and then survived the overdose. And I had to face the decision of what do we do now? Do we physically help her? Do - you know, what goes on? And I had nobody to turn to, to talk with. So I have to say that while it's possible that what people were saying is there may be some mistakes. There will have to be less mistakes in a regulated system than there are in a system that is tremendously hidden and tremendously underground. People from - commonly ask me, how many people are doing this underground? And I have to say, you know, that's the problem.

We don't know what's happening out there now. With a good law, if nothing else, with good reporting, as it's written in the Oregon law, we'll know what's going on. And if we see abuses starting, we're going to know where to stop them and we're going to know how to watch it. And the physicians will be watched and the patients will be watched. And it will happen under a system of reasonable rules and regulations. What's happening out now is anarchy, in the sense that individual family members with no experience in death and dying are making decisions about whether to put plastic bags over their sons, or their lovers, or their mothers, or their fathers, and to help in their death - having no one to consult and not knowing whether what they really might need is just better pain medication. I find that very frightening, to think that anybody would say that, keeping a system illegal and underground and letting it run that way is less dangerous than making it legal and watching it. I just can't accept that argument. [Fogarty] So one chapter in your book, A Chosen Death, is titled Hospice in Hemlock: A Plan. And so I'm wondering if you can kind of describe from your perspective what connection, if any, there is between the two concepts and how that fits into this whole idea of legalizing assisted suicide? [Shavelson] Sure. You know, I really believe that the first thing--and I think that Oregon is a good

example of this--is that the first thing that has to happen is that people have to be offered a good death in every way possible. Now, what that means is that somebody should be getting adequate healthcare, to having a comfortable death without having to say, "Hey, I'm in pain. Put me out of my misery". And the first thing you do when somebody says, "Please, help me die, give me an assisted suicide, hasten my death", the first thing that should be understood is that what they're doing is they're crying for help. They ask they're asking for help in achieving a good death. My opinion is that the first response to that type of request is to say, "Tell me in what way you're suffering, in what way is your death a bad death?' And let's see if we can help you with that. And I think the people who know the best about that are the people who run hospices, who have years and years of experience in helping people who are dying, die more comfortably. However, I believe that after hospice has had its chance and really given the best of care to the dying, if the person has seen all of that and still says, "No, I'm just lying here in bed, I'm suffering too much, you've done your best. Thank you very much. But it's really my choice in the end'. So that after we've answered

their cry for help, done the best we could to make them as comfortable as possible, then it's really the individual who's sick - it's their decision to decide if they want to die sooner. And when when I say "sooner", in my experience with the dozen families and literally hundreds of stories I've heard, we're usually talking about 12 to 48 hours before death, as you could see with Michael Vernon. And he really didn't just say, "Hey, I've got AIDS, I want to die, let me take an overdose". He lived on for quite some time and he was really close to the end. And then we don't know what he did because, again, that frightening secrecy, we have no idea whether this was done correctly or not, because nobody can look at it. And that scares me. [Fogarty] Lonny Shavelson is the author of A Chosen Death: The Dying Confront Assisted Suicide. He spoke with me from the studios of KQED, in San Francisco.