The Edge Episode 11: A Completed Life

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Five years after 29-year-old, terminally ill Brittany Maynard makes national news by choosing to end her life early, medically assisted death continues to face enormous legal and social barriers. And yet public support of the practice is high. As life-expectancy and palliative care improve, we face new questions: Under what circumstances are people allowed to choose when and how they die? And how might rethinking the conversation and practices around death change our very conception of it? To find out, Laura and Leah speak with California’s leading end-of-life doctor and a healthy octogenarian who plans to quit while she’s ahead.

Show Notes:

  • Katherine Seligman’s story about Brittany Maynard
  • PBS documentary about Brittany Maynard
  • An Atlantic article about Dr. Lonny Shavelson’s legacy as California’s leading medical aid in dying practitioner

This episode was written and hosted by Laura Smith and Leah Worthington and produced by Coby McDonald. 

Special thanks to Pat Joseph, Maddy Weinberg, Nathalia Alcantara, Charlie Pike, Ruth Dixon-Mueller, and Dr. Lonny Shavelson. Art by Michiko Toki and original music by Mogli Maureal.

Transcript:

LAURA: In the fall of 2014, a healthy, 29-year-old woman named Brittany Maynard started getting some really bad headaches. She’d graduated from Berkeley’s psychology department a few years earlier, and had been married to another Cal grad for just over a year. But then, on New Year’s Day, Brittany’s doctor diagnosed her with a malignant brain tumor. When she woke up from a surgery to remove it, she received even worse news: The tumor had become more aggressive, and she had at most 6 months to live.

LEAH: So it was no longer a question of if the cancer would kill her, but when. As journalist Katherine Seligman reported in a story we published in 2015—we’ll include the link in the show notes—Brittany immediately jumped into action, learning everything she could about the disease, the prognosis, and, importantly, her options for how to spend her last months. Treatment to possibly extend the remainder of her life didn’t really appeal to her. As she wrote: “Because my tumor is so large, doctors prescribed full brain radiation. I read about the side effects: The hair on my scalp would have been singed off. My scalp would be left covered with first-degree burns. My quality of life, as I knew it, would be gone.”

LAURA: And so she decided to her own take life—or death, rather—into her own hands. Brittany learned of Oregon’s Death with Dignity Act, which enables terminally ill patients to essentially orchestrate and schedule their own death. When it passed in 1994, Oregon became the first state to legalize medical aid in dying, also known as physician-assisted suicide. So Brittany and her husband moved to Oregon where she began the qualifying process, which included getting doctors to declare her terminally ill and mentally competent.

LEAH: But even with the full support of her family and doctors, this was a really difficult and controversial process. And it still is. You know, you have the right to do all sorts of things to your body—tattoo it, force it to climb Mt. Everest, even create or not create another human in it. But when it comes to taking your own life, the rules and social stigma are different. 

[THEME MUSIC] 

LAURA: This is The Edge, a podcast produced by California magazine and the Cal Alumni Association.

LEAH: In this episode we’re joined by two powerful voices on death: a doctor who has assisted with the most deaths in California and a healthy octogenarian who plans to quit while she’s ahead.

LAURA: I’m your host Laura Smith. 

LEAH: And I’m your other host, Leah Worthington. 

[MUSIC OUT]

LEAH: Ok, getting back to Brittany Maynard…so when she started talking publicly about her decision, the story completely blew up, with people on all sides of the debate coming out to share their opinions. And while some advocated for her end-of-life choice, some like religious leaders and other terminally ill patients condemned her decision. Palliative care doctor and former Dartmouth Medical School professor Ira Byock argued that physician-assisted suicide is never valid, claiming, in a PBS documentary, that Brittany “could get excellent whole-person care and be assured of dying gently in her bed surrounded by her family.” He also said that “physician-assisted suicide is not a personal act. It is a social act,” basically echoing a familiar criticism that, because end-of-life decisions affect the person’s friends and family too, they should have a say in it.

LAURA: Brittany did ultimately end her own life, peacefully and surrounded by family, on November 1, 2015. But not before becoming the new face of the country’s right-to-die movement and reinvigorating the debate around end of life options. Her advocacy helped bring about California’s Senate Bill (SB 128) End of Life Option Act, which was signed into law by then-Governor Jerry Brown shortly before her death, on October 5, 2015, and went into effect the following June. And while national polls consistently show widespread support for medical aid in dying among terminally ill patients, the stigma and barrier to access remain. Today California is only one of seven states that have legalized medically assisted suicide.

LEAH: And that’s what today’s episode is all about: the choice to end your life, when you want, on your own terms.

LAURA: And although this episode is sort of about death, it’s also about what dying can teach us about…well…being alive.

LEAH: Yeah, I completely agree. Working on this story has been surprisingly life-affirming…and has completely changed the way I think about the end, and all the stuff that comes in between. 

LAURA: We should add though, that parts of this episode do talk quite explicitly about death and people’s decision to end their lives. So, if that’s not for you, go ahead and skip this one.

LEAH: And with that, let me introduce our first guest…

LONNY SHAVELSON: I’m Lonny Shavelson. I’m presently the chair of the American Clinicians Academy on Medical Aid in Dying. Let me just clarify when we say medical aid in dying, I don’t like beating around the bush. So my language will be blunt. It’s taking medications to die. We want to know what we’re talking about.

LEAH: Lonny first got interested in medical aid in dying in the 90s, during the AIDS epidemic.

LONNY: People were passing around medications so that AIDS patients who wanted to hasten their deaths could so. And I wanted to know what that looked like before thinking about: do we want to legalize this? And the answer was a resounding yes, we must legalize this. There was an extensive underground, that was highly problematic with people taking the wrong medications at the wrong times for the wrong reasons, with the wrong people helping them, usually meeting friends, lovers, family members, who then felt tremendously guilty, because of the hidden aspect of the whole thing. And so it was just awful what was happening.

LEAH: And the more Lonny learned about it, the more he came to support the idea of legalizing medical aid in dying. And for a while he was pretty alone in this work. But statewide policies eventually started to catch up and, as we mentioned earlier, Brittany Maynard’s story helped accelerate that process. Then in 2015, the law in California passed to legalize what was now called “medical aid in dying,” the term “physician assisted suicide” having dropped out because of the stigma associated with suicide. But just because there was a new law in place, that didn’t mean the medical community was ready to implement it.

LONNY: Well, I realized that virtually nobody in the state of California knew anything about it. And that means, the clinicians included. There was no training done. And so I kind of put myself in the position of saying, “Okay, I’m going to open up a practice.” I’m going to learn about this. I’m going to teach other people what I learn. I’m going to figure out how it’s best done clinically. The philosophical “should we be doing this?” is gone. The law’s here, patients are asking for it, somebody has to learn how to do this right.

LEAH: In 2016, in response to that need, Lonny founded Bay Area End of Life Options, a Berkeley-based medical practice that served as one of the first hubs offering medical aid in dying services to patients, as well as training to various providers. 

LONNY: The academicians are not teaching this, the research institutions and the pharmacology institutions are not learning anything about this. Because of the taboo. Because of their fear of being labeled the death institution. For so many reasons, the major institutions have put up barriers rather than help the clinical practice of medical aid in dying. What’s happening now is the universities are calling us the clinicians at the bedside and saying, “Uh oh, we don’t understand this, how do we do it?” And we’re more than happy to help. That’s what the Academy is about. How often does a doctor get to be one of the leaders of an entirely new field of medicine?

LEAH: And this is a curriculum that Lonny has been developing with a team of nurses, doctors, social workers, chaplains, you name it, all working together to chart this new territory and, basically, to write the rulebook for helping people die.

LEAH: So when you’re training doctors and physicians in medical aid and dying, what are the most important things that you’re trying to teach them? Is it very, like clinical—these are the procedures that we follow? Is there some philosophical or ethical, moral component to it?

LONNY: You know, when we teach the clinical medical aspects of medical aid in dying, we are starting off with the idea that we’re not advocating for medical aid in dying, that we’re advocating for patients to have their choices to go to the best death by their definition. We’re not here to say, “Oh, if you want medical aid in dying, here’s your prescription.”

LEAH: We should add that these are patients who are already dying. In fact, by law, they have to have a prognosis of less than six months. But Lonny is really emphatic that medical aid in dying shouldn’t be a solution to lousy medical care. 

LONNY: So when somebody calls me up and says, “I want to do medical aid and dying,” my first thing is, “can we just change that a little bit and say you’re considering medical aid in dying?” Because you probably don’t know a whole lot about why it and what it entails, why you might want to do it, why you might not. What are your other options? You can take medications to die should you wish. But I’m not going to lead you that route, I’m not going to tell you what to do, I’m going to sort of talk you through death. And then you get to decide.

LEAH: To give us a better sense of what this process looks like, Lonny told us the story of one patient he helped.

LONNY: So typically, here’s a gentleman who had a cancer that had spread through his body, he was in his early 70s, he had a very, very full life, three children, and a wife at home. And he was in hospice care, approaching the end of his life and knew that. And he says, “I want to look into this medical aid in dying thing.” And so hospice says, “Well, we don’t participate actively in that,” which is common for hospices, “but we support you. And let’s find you a doctor.” And in this particular case, it was me. So my first job is to have a conversation, which we call the first verbal request. Once you do the first verbal request, you have to wait 15 days before you can help the patient die. And that’s okay, this guy was in no rush. But my habit is to do it quickly because guess what: When patients ask for medical aid in dying, they’re dying. So I take the first verbal request within 24 hours. And then I take a deep breath, and the patient takes a deep breath, and we have 15 days.

LEAH: So can I ask what your conversation with this patient was like?

LONNY: So the first thing I say is “I’m here, I got you. I’m going to make sure you have this option if it’s what you want.” But now let’s talk about reality. Maybe it’s maybe it’s not what you want. How can I help you die better? And then we’re going to have a long, one to two hour meeting about, how are you dying? Now that I’ve seen your medical records, and I’ve talked to hospice, and all that, what are your needs? How are you dying? What are your philosophies? What’s this all about for you? And then when 15 days happens, we have another conversation, because the law says we have to take a second request, verbally, directly from the patient. And then if it looks like they’re very close to death, then sometimes they will set a date. We’ll discuss how the day of death looks. And we will continuously discuss, “maybe you don’t need this.” I ask that question—I tell them at the beginning, “I will say that to you so many times, you’re going to be sick of me asking you is: you sure?”

LEAH: With this particular patient, how did you know that medical aid in dying was the right choice? Or how did he know? How did you kind of arrive at that decision?

LONNY: Well he knew that he had a point of transition between severe illness and death where he didn’t want to go. So he said to me, I don’t want to be in bed and can’t get out. I don’t want to be wearing diapers and have my wife or someone else have to change my shitty diaper. Everybody has their line they don’t want to cross. And that was it for him. And he got to the point where he was paralyzed because of a tumor in his spine, and he couldn’t get out of bed. He was having significant pain, which we controlled relatively well with the help of hospice. But he got to the point of—and here’s what I hear all the time—fatigue. Just really so tired. And this isn’t depression. This is the fatigue as you approach death. And he just felt like, “you know what? I’m done. The next two weeks are going to be so hard. I’m so tired. I’ve seen my grandkids. I’ve taught my son about the motorcycle he’s getting. And I’m ready.” And what I hear mostly is, “Doc, I’m done.” 

LEAH: So Lonny took us through this patient’s last day, how, after weeks of planning, he and Lonny orchestrated those final moments. And I have to say, it was both what I’d imagined and also nothing like what I’d imagined.

LONNY: So this particular patient who was a, he was a motorcycle mechanic. And he worked on cars, that was what he loved the most. So he had his hospice bed moved to the garage, put on the hydraulic lift that he usually picked trucks up with, gathered around all of his motorcycles and his family, including a couple of very lovely Cadillacs that he had fixed from a long time ago. And we all gathered around. And that was his ritual of a dignified death. And I was there with him. I mixed up the medications. We had another conversation about, “this is the point of no return. If you tell me right now that you want me to go away, and you guys want a party for a day, fine and dandy. I’ll come back another day. But if you take this first dose”—and there’s a split of two doses of medications—“if you take this first dose, you will die.” I’m very, very blunt about that. No, metaphors. No, “you will pass.” No, “you will no longer live.” It’s just, “this is medical aid in dying.” This is on Tuesday when he said to me, “Well, can we do this on Tuesday?” I said “that’s rather vague. Let’s be specific. On Tuesday at 3pm, you will be dead.” And I think it’s really important to do that. Because this is a serious decision. you’re gonna die. And so on that Tuesday at 3pm—at 2pm—he took his medications to die. He was jacked up on the hydraulic lift. I had to have them lower it because I’m short. And he died with his family around in tears, looking at his cars and motorcycles. And an hour later he was dead. 

LEAH: Can you tell me about that last hour, or however long it is between when he took the drugs and then he died? Is there any fear? Is he talking with his family?

LONNY: I have yet to encounter the patient that changed their mind at that moment. They’ve been thinking about this for a long time. And so, you know, in the more than 200 deaths that I’ve attended, and more than 400 patients who have been in my practice, nobody changes their mind at the last minute. And I haven’t once even seen a moment of hesitation, when they have the medications in their hand and they’re about to swallow it, I’ve never seen anybody pause. Not only that, but frequently, they will shut me up and say, “Can we just get on with this?” 

The medications include a huge amount of morphine in four of the medicines, so that when the patient takes those medications, they initially have a period of euphoria from the opiates. And I just tell them beforehand, “you’ll feel that euphoria. Enjoy it. You’re going to go up a little bit and you’re going to say ‘oh, that’s lovely.’ And you’re going to have an uncontrollable urge to sleep and you will fall asleep within three minutes or so. Usually three to ten minutes. At that point in time, you will be so deeply unconscious that I can’t tell you where you are. Think of surgery anesthesia. You will disappear. Maybe you’re someplace that I don’t know, maybe you’re not, I don’t know. Maybe you’re still hearing things, but you’re so deeply unconscious, that I could do a heart transplant and you wouldn’t feel it. Then you will remain unconscious, while the medications continue to work, which are medicines that can stop your heart, any place within 30 minutes to about two to four hours.” So there’s this period of deep coma, which I think is very important for the family, to watch that transition, that somebody didn’t just take the medications and two minutes later, they’re dead. That transition is very important for them to realize the reality of what’s happening, to sit around the bedside, hold their loved one. I encourage people, if you want to crawl into the bed, crawl into the bed. 

My role switches then to be the doctor to the family. And when I say family, by the way, I don’t mean necessarily biological family—this is friends, loved ones, neighbors, whoever the patient wants to be there. And then we sit, and often people tell stories of the loved one’s life. And we sit, and we wait, and I have a small tiny EKG monitor that tells me exactly what the heart’s doing. And I can say he’s getting closer or not. Dying is not necessarily always pretty. Even though you’re unconscious, there’s what we call agonal breathing where the patient seems quite unconscious and is laying there and the family is quite comfortable and all of a sudden the patient goes “ahhhh” and takes a deep breath and everybody jumps out of their skins or doesn’t because I’ve warned them that’s about to come. There are sometimes jerking movements as the person gets right to the edge of death. And then I will say, okay, your mom has just died. And then, interestingly, even though we knew it was about to happen, even though it’s been happening for two hours, that’s when the bawling tears happen. The reality of the moment of death. And it never fails. It is a real moment, when you say, “Mom, son, brother, sister, daughter, lover, whoever has just died,” then the more overt tragedy is there. And then I sit for a moment with that with them. And then I say, “I’ll go out and take care of things. Be with your loved one.” And that’s the end.

[MUSIC BREAK]

LEAH: After four years, Lonny closed his practice last August so he could focus his efforts on expanding access to both education for care providers and end of life care for patients. Basically—he didn’t want to be the only one in the business anymore. And, in fact, he led one of the largest trainings at UC Berkeley, just before the pandemic, where some 300 clinicians came to learn better medical aid in dying practices. And so, by no calculated effort on his part, Lonny has become a well-known, well-respected expert in his field…which made us wonder: how does he feel being a nationally recognized leader in…death?

LONNY: Do I have some sort of a morbid interest in being the doctor with the highest numbers of deaths? No, not at all. But do I find it rewarding? Absolutely. I’ve never felt more gratitude from a patient or family for what I do than this.

LEAH: For Lonny, much of the reward comes from being able to help people end their lives in a way that feels right for them. But he insists that there is no right or wrong way to die—and for that reason, he’s very particular about the words he uses to describe the services he offers. 

LONNY: I never use the term death with dignity, for medical aid and dying, although the movement has done so. We don’t have any monopoly on dignity. People die with dignity in so many different ways. I don’t want to try to own that expression. SO Death with Dignity could be: you die in pain, while finding the redemptive aspects of pain and you learn something from it. That could be a dignified death if it was dignified for you. You die with hospice taking morphine and you don’t think about medical aid in dying at all. I don’t want medical aid in dying to be “the dignified death.” I want all deaths to be the dignified deaths.

LEAH: But he also says that, with medical aid in dying being such a new option, there isn’t a lot of…precedent for how to make these sorts of decisions. 

LONNY: We are working out in an entirely new field of medicine and death. And everybody still lives a little bit in fear and discomfort. But when they start asking me what can I do on that day? I say: “anything you want.” Now, the only thing you can’t do by law is, you cannot do this in a public place. So you can’t go out to the park, play Grateful Dead music and dance. Because there are other people in that park, who may want to not see this. Outside of that, sky’s the limit folks, do whatever you want. Make your own tradition because there isn’t a tradition yet. There is no Christian service, dedicated to medical in and dying. There is no rabbinical service dedicated to a medical aid in dying. Imams don’t know what to do, but they do something. 

LEAH: What’s the wildest or most surprising thing you’ve seen someone choose to do? 

LONNY: There is none. I’m never surprised by what anybody does. It varies from 20 people singing choruses together, to the man who died jacked up in his garage on the hydraulic lift. And all that is not surprising. What would be surprising to me is the mythological Hollywood scene where everybody gets together and dances. And then is happy and says, “Oh, she really had a lovely death.” Let me tell you from experience, there are no lovely deaths. Deaths are by definition, bad. Somebody at the end of my procedure is dead. That’s not good. It’s inevitable. We make it as best as it can be. We haven’t taken away deaths, and deaths are sad.

LEAH: In terms of what the current regulations and policies are, I know it’s quite strict and it’s not that easy to request and receive medical aid in dying. What do you think about the current regulations and whether they are inclusive enough or whether they do enough? And what would you like to see or what do you anticipate seeing change in the coming years?

LONNY: I think it’s really important for clinicians to learn how to work with this law, because it’s what we have for a while, nothing’s gonna change very fast. And then if you say to me, what do you think about the 15 day waiting period? I’ll be quite honest, I think it’s terrible. There are better ways to do it. I’m not saying we abandon all waiting periods. I’m not saying that we—I’m just saying give us some leeway here. I don’t know any medical procedure that doesn’t allow for flexibility in clinical circumstance. It’s not a perfect law. But it did give us the right to do this, and to learn how to do it, and to know what works and what doesn’t. 

LEAH: One surprising thing that Lonny and others in the field have discovered, is that when people ask for medical aid in dying, whether or not they end up choosing it, it tends to have a positive impact on their overall end of life care.

LONNY: When somebody says, “I’m suffering so much that I want to take medications to die,” a bell goes off, hopefully, in the clinicians head and says, “tell me about that suffering and how can I help it?” It’s been documented in study after study after study. When you ask the question, people gather around and try to give you better care.

LEAH: You were talking earlier about how medical aid in dying is only one option. And I was thinking about how that really depends on someone’s access to good, high-quality medical care, where they live, what their demographic is, you know, a lot of talk about like, Black people in particular not getting access to the same kind of healthcare. So how does that fit in? Because someone’s healthcare options aren’t, you know, they’re not equal across the board.

LONNY: We are guilty as charged as all of medicine is for not providing good access to care equally. It is a procedure that is mostly used by more affluent, educated, white people. So is cardiac transplant. Every aspect of medicine is affected by the lousy access we give to poor, less educated people in medicine. We know that people get poorer pain control, if you’re poor, if you’re Black, you don’t get as much morphine at the end of life, you don’t even get as much morphine for surgery. Right? We know that if you go to the emergency room with symptoms of a heart attack, and you need an angioplasty, that if you’re African American, there is a 30 percent less chance that you’re going to get one. Medical aid in dying is not exempt from that problem. We have that problem, is that if it’s good medical care, which I consider it to be, well, good medical care is not distributed very evenly in our society, and this isn’t as well. That said, there are other parts to consider, is that that there are religious issues that keep Latin Americans who are more commonly Catholic from participating. There are issues of trust in the African American community of when, me as a white doctor enters an African American house, and I’m there to help their brother die. And they think they’ve gotten lousy medical care up until now. And the first time that somebody acts like they care is this white dude is walking into our house to give them an overdose. That doesn’t play well, and I’m very conscious of that. And I just bring it out in the front. So, you know, it’s new, and we’re working on it, and we’re getting better. But do we have a long way to go? Sure. That’s what my job is right now.

LEAH: Do you see there being a shift in the way that we as a society, think about and talk about, and either memorialize or celebrate death in some kind of way?

LONNY: There is no question that the taboo and stigma around medical aid in dying is decreasing quite rapidly. I no longer call a funeral home and they say, “Hey, Doc, how odd it is that you’re at the bedside at the moment of death.” The first time I did it with a funeral home, they wanted to call the coroner and have it investigated. And now they say, “Oh, sure. Ah, in fact, we’ve had three of your other patients.” Stigma still exists, taboo still exists. But there’s no question it’s getting better. Families are less afraid of telling the cousins what just happened. And so I think we’re making huge headway to this becoming one part of the whole menu of possibilities of how you will die. 

[MUSIC]

LAURA: I find this idea really moving—that someone could decide and really orchestrate what they want the end of their life to look like. Like the mechanic. He gathered everyone he loved around him in a place that meant a lot to him. And we don’t really get chances to do that often, to take some time to reflect on what we’ve done or who we’ve loved, especially not at the end. I picture him like some kind of orchestra conductor. 

LEAH: I know. There’s something really beautiful about having the end that you want. And that feels right for the life that you’ve lived. And I actually think that our next guest has a lot to say about that, so let’s turn to her now.  

RUTH DIXON-MUELLER: What this is all about, the voluntary death, is the notion that there’s a very different way of ending your life that is thoughtful, peaceful, planned, and safe, and voluntary. Purely voluntary.

LAURA: That’s Ruth Dixon-Mueller, a retired UC Davis sociologist and graduate of Cal in the 60s. She spent a lot of her career working on issues relating to women’s employment and sexual reproductive rights internationally. 

RUTH: And now that I’m on in years, and I’m currently living at—I just moved in two years ago to St. Paul’s Towers, it’s a senior living community in Oakland. And so the demographic has shifted, and my interests have shifted. That’s partly why I’m particularly interested in some of these end of life choices now.

LEAH: In particular, she’s focused on the concept of voluntary death, which we should be clear is totally distinct from the service that Lonny provides. While Lonny works exclusively with medical aid in dying, which is a procedure made legal by California’s End of Life Option Act, what Ruth’s talking about is something completely different—and pretty taboo.

RUTH: I feel that I’ve had a good life. And I kind of don’t want to spoil the ending by living through the uncertainty of illnesses and the, what people call this sort of “cascade of indignities” that are visited on us, is visited on us as we age. I would like the option of making a decision when I’m ready. And ideally, before I start down the slippery slope of becoming physically incapacitated or, particularly, mentally incapacitated. So I’m thinking frankly, of, of ending my life, probably in the next two or three years, and before I tip over the edge.

LAURA: Could you tell us how old you are? 

RUTH: 83

LAURA: You look great. I just have to say. 

[LAUGHTER]

RUTH: I have to say that life goes by very quickly. And I’m really shocked to discover that I’m not only 50 or 60, but now over 80. I mean, the 80 part is really shocking. But anyway, here we are. It’s a kind of great sort of joke on all of us. There’s nothing you can do about that.

LEAH: So how did you first get involved in kind of end of life planning?

RUTH: I grew up in a household where my parents were very practical people, and you planned for things. And you certainly planned for your death in terms of getting your affairs in order. 

LAURA: Can you tell us a little bit about your own plan? And if there was a time or how you came to that decision?

RUTH: You mean about my own plan for potentially ending my own life? 

LAURA: Yeah. 

RUTH: Well, I guess like a number of my friends, I’ve spent decades actually thinking that I really don’t want to live to an old age. It’s a question of feeling that, in a certain sense, what’s the point in terms of living a beyond, let’s say, I’m thinking now, my mid 80s? 

LEAH: For Ruth, who is very physically and mentally healthy, this is really about maintaining control over her destiny. And even what Lonny and the state of California provide—legal medical aid in dying—is too limiting for her. 

RUTH: I find myself as a very autonomous person. And I like to feel—I have to say, I feel cheerful about the idea that I can make a decision on my own, and that I could have plans of my own, and that I wouldn’t have to wait until I have some terminal condition, God forbid, in order to be permitted to ask for medication to end my life, which would be the situation under the California’s End of Life Option Act. 

LEAH: Was there a moment when you realized that was the decision you were going to make? 

RUTH: No, I don’t think there was actually a moment. I think it was just a growing realization. I think partly because two of my close friends actually ended their lives very peacefully and in, I think, a very beautiful and self determined way, after planning, planning carefully for years, that made me realize I can do that. Because I was very close to them. I actually talked to both of them the day that they died—one of them I spent most of the day with her, and then she ended her life that night, and I knew she was going to do that. So I came to admire these women tremendously. 

RUTH: Really knowing people who have done this, and realizing how beautifully it can be done as compared with what we usually think of as suicide as something violent or desperate, or whatever. It’s been a very affirming experience for me. Both of the women—now, here’s the crucial thing—I know that they wanted very much for people to know that they were not depressed, that this was not a suicide coming out of depression. And that’s how I feel also, I mean, I am certainly not depressed, I’m really enjoying my life. So the idea of ending your life while the going is good and while you still feel good about yourselves and others and while you can plan it, because it does require planning, is very positive. And I guess that’s what I think of is, anyone who’s able to be able to shape things the way they like to see them. It can be a beautiful experience. 

LAURA: I’m curious what you did with them on that last day.

RUTH: Well, actually, I was, I misspoke. I spent the day with my friend, Deborah, who ended her life when she was 65. She actually kind of tricked me a little bit because she had invited—I knew that Deborah was planning on ending her life, and that it was going to be soon she was actually frankly kind of waiting for her mother to die. Her mother was 99, which would kind of release her to do what she wanted. And so 65 for her was a very symbolic point of her age. And so she phoned me up all cheerfully, and asked me to spend a day with her at a spa, a Japanese spa in San Francisco. And she said she was spending the night at the Japanese hotel up there. So this was kind of going to be a celebration. So it wasn’t until I went over to meet her at the spa, she confessed that this was going to be the night and she actually took me up to her—she said, Are you interested to see what I’m what I brought? And I said yes, because I really was interested. I mean, Deborah had been very involved in the movement itself, in the death with dignity movement, collecting signatures for the California End of Life Options Act, and so on. And so I went up to her bedroom, and she showed me very proudly. She was planning this all after midnight, it was sort of symbolic for her. And I’ll tell you something she did that was very sweet, I thought, which is she was concerned that the housekeeper not find a body in the room in the morning. So she asked me to phone the front desk in the morning and tell them that I had had an appointment with her, and I was worried because she didn’t show up. And that I had no answer in the room. And I said to the front desk people, “I’m afraid she may have taken her own life, and I wish you would send somebody not the housekeeper.” And so they did. They did. 

LEAH: How do you say goodbye to someone when you know, it’s the last time you’re gonna see them? What was it like when you said goodbye to her?

RUTH: [Laughs] I tried so hard to just say, “bye!” I mean, she didn’t want me to get all emotional. I knew that. She didn’t want to have to care for me. You know, we hugged, and I just said, “I really wish you well on your trip, your adventure” or whatever. And she went—actually she went to a movie and then she was going to for the evening and then and then she was going to, then she sent emails to her family, her sister and so on. They already knew she was going to do it. I have a letter that she’d written a year earlier saying that this was a decision she was going to be making and that no one should take it personally. 

LAURA: I’m wondering if you’d feel comfortable like reading a little of it? Or if you wouldn’t want to if that’s too private, that’s fine.

RUTH: I’ll just go look.

LAURA: Okay.

RUTH: Here’s a very short piece that she did. “Can I be totally in love with this day of fall and not feel like I need to see every fall from now on? Or should I spend any moment of time thinking that I have not loved fall colors enough in the past? So how much is enough? Will my loved ones get it that what is enough for me may be different enough that I may be done and that my passing is not personal? Has anyone ever heard me say I want to grow old?”

LAURA: You say 65. And I’m like, Well, my mom is 67. And she seems so young. You know, like we go hiking together we go. 

RUTH: Yes, of course.

LAURA: It’s younger than I would imagine…I’m curious to know how she decided THEN.

RUTH: She was not wanting to grow old. She didn’t—she had seen what happened to her mother, to others. And so she was just very interested in the sort of empowerment of that. And she didn’t want to be old. Let’s just make that very clear. She’d, again, really enjoyed her life. And she didn’t quite see the point of sticking around for another 10 or 20 or 30 years.

LAURA: So interesting. It’s…I love this idea of it being empowering. And I’m simultaneously having a hard time talking about this almost. You know, like, my heart’s racing a little bit, and I wonder, do you feel that ever? You speak with such ease. Do you feel that ever? 

RUTH: Actually, my heart’s kind of racing now. But I think it’s partly just because you’re interviewing me. It’s a kind of a process of normalizing discussions of death and dying. And this is going on in our culture in general.

LEAH: Speaking of, you know, questions that are hard to ask, I mean, I don’t think I’ve ever asked anyone this and in complete seriousness, but how do you envision your own death?

RUTH: Well, I envision a couple of options. What I prefer, it would be something a little dramatic, which is to fly to Switzerland, and go to one of these clinics where their business is to provide a safe, what they call a “safe voluntary departure,” basically. And that’s a sort of a fantasy thing because Dignitas does do this, but they really expect you to be suffering. 

LAURA: Dignitas, for those who don’t know, is an organization based in Switzerland that offers a so-called “self-determined death.” Their whole ethos is all about giving people the ability to choose their own deaths—what they call “the last human right ”—similar to the way Lonny does, which is to say providing medical aid in dying to those suffering from extreme, typically terminal illnesses. Which at the moment doesn’t include people like Ruth, who are of sound mental and physical health.

RUTH: Frankly, I don’t I don’t think that they would consider me eligible even though I think they’re moving a little bit toward the direction of what they call, as a grounds for ending your life, a “completed life.”

LAURA: It’s sort of an interesting idea, this idea of a completed life. I think people often talk about bucket lists, like there’s some kind of checklist, like as though if I fly in a hot air balloon in Myanmar or learn how to scuba dive, THEN I’ll be “done.” But what Ruth is talking about is kind of different. I have the sense from talking to her that she thinks a completed life isn’t about checking items off a bucket list, it’s more about a feeling, an overall sense of being fulfilled and satisfied by the time you spent being alive. 

LEAH: Well this is actually making me wonder where the bucket list idea even came from. Like, who decided—who was the first person who was like, “we have to have accomplished X number of things”? It must have been some capitalist.

LAURA: I was just going to say that. Some capitalist thought this up!

[LAUGHS]

LEAH: Well, anyway, back to Ruth and her end of life plans.

RUTH: I would probably go the Final Exit route and choose what my friend Lillian chose.

LAURA: Lilian is Ruth’s other friend who chose to die in her 90s.

LAURA: You may have heard of Final Exit, a bestselling book written in 1991 by Derek Humphry, better known as the founder of the Hemlock Society. Though the society is now defunct, Humphry’s book and the ideas behind it inspired the creation of the Final Exit Network which is a right-to-die nonprofit that supports people in choosing and planning their own deaths. They’ll even send people, called “final exit guides,” to be there by someone’s side as they die.

RUTH: I don’t want to sound cavalier about it. To sort of be interested in the right to life, like to be pro-choice, doesn’t mean that we’re pro-death, any more than being pro-choice on abortion means you’re pro-abortion. It just means people should have these choices depending on, you know, careful consideration of all of the economics, and the personal relationships, and the losses and so on. This is not an easy thing. I mean you obviously would want to weigh all those things off one another. I’m divorced, so I don’t have children, biological children. So I’m basically free to make these kinds of decisions. I mean, if you’re in a family situation, with kids and with partners, or whatever, siblings you’re close to, that can be a very different thing. 

LEAH: Is there any part of it that you’re afraid of?

RUTH: No. Only, well, only that I’d postpone it too long. And then I’d have a stroke or something. I mean, I know that sounds silly to end your life in order to avoid something that may or may not happen. But for some of us who are control freaks, that’s…[laughs] The one way to avoid uncertainty is to do something that’s certain. And so no, I don’t have any fears. I know, when Lillian was talking to me, she was mostly afraid that whatever she took to end her life wouldn’t work. And she would wake up and discover that she was still here. And then she’d say, “so then what would I do?” She’d say, “none of you would want to speak to me anymore. Because I’d be back.” 

LEAH: I love this sense of humor that all of your friends have. I mean, there’s just so much…joy. 

RUTH: They do and I’ve had I have to say about Lillian, when the Final Exit people came to interview her a couple of weeks beforehand, and they asked all kinds of wonderful questions about how prepared she was and who to talk to and so on. And, you know, if you’re really depressed, they will not assist—I mean, they want you to get treatment for your depression. They’re not going to say okay, so they asked Lillian if she was depressed, and I was sitting beside her, they entered. She said, “Of course, I’m fucking depressed. Just look at me!” And she had bruises on her arms and, you know, her hair wasn’t right. It was like, she was a beautiful woman and very proud, and I had to kick her under the table to stop her saying that she was depressed. But fortunately, the two volunteers burst out laughing. So, you know, I think one needs a sense of humor about a lot of things when you’re at this age, and I guess I’m finding a lot more things funny. In a sort of darkly comic way, like, “Oh my God, who would have guessed.” Right? So, here we are….

LEAH: Is there anything that you really want to do before you go?

RUTH: I’ve done a lot. I’ve done a lot. And so I feel—no. People have lists of things that I should do this, and no. I’m totally contented, totally contented. I feel as if my life has kind of come in a natural curve. And that in another couple of years, it’ll be time to plan my departure. On good terms, you know. Saying, “Okay, it’s been good, thank you.”

[MUSIC IN]

LAURA: This is The Edge, brought to you by California magazine and the Cal Alumni Association. I’m Laura Smith.

LEAH: And I’m Leah Worthington.

LAURA: This episode was produced by Coby McDonald, with support from Pat Joseph, Maddy Weinberg, Nathalia Alcantara, and Charlie Pike. Special thanks to Ruth Dixon-Mueller and Dr. Lonny Shavelson. Original music by Mogli Maureal and the track “Undying” by Banana Cream.

[MUSIC OUT]

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Comments

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