Death with Dignity

What does it mean to have a "good" death?

“I love the thing I wish most had not happened.”

I think about this quote from Stephen Colbert all the time. Colbert is speaking to the loss of his father and two brothers in a plane crash when was ten years old. He is attempting to describe what I attempt to describe in this episode - the role of suffering and loss in our lives.

I have also experienced enormous loss at a young age. I have experienced suffering and loss and grief and I have felt gratitude and love and awe in the wake of all those experiences. They are inextricably tied together in a way I find sacred and mysterious and human.

Death, the ultimate loss, can also involve an enormous amount of suffering. What is our role as a society in providing tools to reduce that suffering? What are we saying about suffering when we do? What does it mean to have a “good” death? These are deeply human questions and the most important type we tackle here at Pantsuit Politics. I hope you leave this episode more in love with being alive, more ready to talk and think about not being alive, and with a long list of questions about what it means to be human.

Topics Discussed

• Physician-Assisted Death

• Outside of Politics: How to Be Happy in Old Age

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Episode Resources

Pantsuit Politics 10th Birthday Celebration

Physician-Assisted Death Resources

• Assisted dying around the world: a status quaestionis - Mroz - Annals of Palliative Medicine

• A Report of Physicians’ Beliefs about Physician-Assisted Suicide: A National Study - PMC

• Oregon Emergency Physicians' Experiences with, Attitudes toward, and Concerns about Physician‐assisted Suicide - Schmidt - 1996

• Oregon Death with Dignity Act Data Summary 2016

• Out of vetoes, Portugal president enacts law allowing euthanasia (Reuters)

• Being Mortal | Atul Gawande

• It’s time to stop hacking humanity (The New Atlantis)

• The Last Thing My Mother Wanted (The Cut)

• The Holocaust Story I Said I Wouldn’t Write (The New York Times)

Outside of Politics Resources

• How to Be a Happy 85-Year-Old (Like Me) (The New York Times)

Show Credits

Pantsuit Politics is hosted by Sarah Stewart Holland and Beth Silvers. The show is produced by Studio D Podcast Production. Alise Napp is our Managing Director and Maggie Penton is our Director of Community Engagement.

Our theme music was composed by Xander Singh with inspiration from original work by Dante Lima.

Our show is listener-supported. The community of paid subscribers here on Substack makes everything we do possible. Special thanks to our Executive Producers, some of whose names you hear at the end of each show. To join our community of supporters, become a paid subscriber here on Substack.

To search past episodes of the main show or our premium content, check out our content archive.

This podcast and every episode of it are wholly owned by Pantsuit Politics LLC and are protected by US and international copyright, trademark, and other intellectual property laws. We hope you'll listen to it, love it, and share it with other people, but not with large language models or machines and not for commercial purposes. Thanks for keeping it nuanced with us.

Episode Transcript

Sarah [00:00:29] This is Sarah Stewart Holland.

Beth [00:00:31] This is Beth Silvers.

Sarah [00:00:32] You're listening to Pantsuit Politics. If you are one of the 70% of Americans who avoid talking about death, I have some news for you today. That is the subject of today's show. We are going to be talking about physician-assisted death, the way that it has rolled out across the world in the United States, the controversies. Surrounding the legal and ethical questions. Of course, this comes with a warning that the show will be dealing with topics involving suicide, suffering, death. It is a show we put off for a long time. How long have we been wanting to tackle this topic on Pansy Politics, Beth?

Beth [00:01:15] At least three years.

Sarah [00:01:16] At least. And it kept getting punted and pushed down the list. But the expanding access in Canada, the debate in Britain, as well as some high profile deaths including behavioral economist Daniel Kahneman who chose physician assisted death in Switzerland recently, really has pushed this topic even further to the forefront and we didn't want to delay this conversation even longer. Acknowledging that there is a lot going on in the headlines, in the news, we just felt like this couldn't wait any longer and it's a really important conversation we've been meaning to have and so we're going to have it here today.

Beth [00:02:00] Before we do that, on a much lighter note, our big birthday celebration in Cincinnati coming up this July is sold out, but you can still come. We would love for you to get one of our virtual tickets and join the show. You can join via live stream or with that same ticket, get a recording to watch at your convenience. But if you join via a live stream, you can really feel like you're part of the fun and we would love you to do that. We are so excited to celebrate 10 years together with all of you. We have some really fun plans for this show. So we hope that you will grab a virtual ticket or join the wait list for in-person tickets and be making plans to be there if you got an in- person ticket. All of the information that you need for this is in the show notes.

Sarah [00:02:40] And the people watching via live stream can participate. So we'll be having polls and trivia and you'll be able to participate via the live stream and really feel like you're a part of the celebration of this big 10-year birthday here at Pantsuit Politics. So we hope all of you will get a virtual ticket or join the wait list for in-person tickets. Again, like Beth said, all the information is in the show notes. All right, up next, memento mori. We're going to talk about physician-assisted death. Physician-assisted death, which is also called by proponents’ death with dignity, has really expanded over the last several decades. It started in Switzerland way back in 1942. They decriminalized physician-assisted death with very little regulations or requirements to pursue that. It expanded to the Netherlands in 2002, Belgium. They were the first two countries to legalize and formally regulate both physician-assisted suicide and euthanasia.

[00:03:56] In the U.S., it was Oregon who was really the pioneer in this legal framework in 1997 with its Death with Dignity Act. But we've really seen a dramatic expansion in the last, let's say, 10 to 15 years. You now have 10 states in the United States that allow for physician-assisted death, plus the Washington, D.C., lots of other states, are debating expansion now. Globally, it's now legal in Canada, Australia, Spain, New Zealand, Austria, Colombia. Most of Western Europe's liberal democracies allow some form of physician-assisted death, and we have countries actively debating it right now, including the United Kingdom, Ireland, and France. So there has been a lot of discussion, a lot of deliberation, a lot of emotionally driven debate around this, particularly recently.

Beth [00:05:01] I read a series of books by Louise Penny, a Canadian author, and you can tell in some of her later books that this topic is a frequent topic of conversation in Canada, because there has been such a backlash to the prevalence of physician assisted death there. One in 20 deaths in Canada now occur through its medical assistance in dying program. And when you combine a statistic like that with the impact of a global pandemic, when people are really thinking about mortality and really thinking about who should be here and who should not, and what lengths we should go to support people's lives and health, Louise Penny's writing about this has been really interesting to me in the fictional context. So when it creeps into fiction in that way, you know that there's a real cultural undercurrent taking place.

Sarah [00:05:56] So let's walk through what I think most people think about when they consider physician-assisted death and how we have this rapid expansion in Canada, some high profile cases that really push the boundaries I think what people consider. So physician-assisted death or death with dignity, I think when particularly Americans consider it, (and 72% of Americans say they support these laws) is the very tightly controlled, tightly regulated situation that is currently allowed in the United States, which is a terminally ill patient who medical professionals have determined usually have about six months or less to live, that they are mentally competent to make this decision. And there's usually some legally enforced waiting period. What you see in the United States is a demographic that is highly educated, insured and white. So that's what we see in the United States. And I think that's mostly what people are thinking about. They're thinking about someone who is terminally ill or at the end of a long illness, who says, I don't want to die in a painfully drawn out way. I know I'm going to die. I want to take control of that. There was a high profile case of a very young, terminally ill woman in California who had to travel to Oregon. And she talked about like I don't want to have to leave my home to do this. I know I'm going to die. I want to die on my terms in my home with my people.

Beth [00:07:47] And when I have thought about this casually, I think the other assumption in my mind is that there is either presently or almost certainly a tremendous amount of physical suffering. So not just the mental anguish of knowing that death is near, but that you would physically be in just a brutalized condition as you leave this world and wanting to avoid that for people.

Sarah [00:08:12] So I think that scenario, which is what we always do, particularly I think with medical ethics, we create a scenario that makes us comfortable and we say, well, this is what we’re fighting for. When the reality is always more complicated. I was listening to an interview with an author who spent years and years researching physician-assisted death. And I thought what was so interesting is physical pain is not often listed as a reason people are pursuing physician-assisted death. Often, it is the autonomy and it is dignity. And this interviewer was like I'm going to be as blunt about this as possible, often it’s sphincter control. It is people do not want to poop themselves; they don't want somebody else wiping their butt. This is a thing that comes up over and over and over again. That's what people link with dignity, which I think is so interesting.

Beth [00:09:07] That kind of breaks my heart just thinking about it.

Sarah [00:09:12] It breaks my heart. Because here's what I think. I think that is not about dignity, that is about control. That is about the physicality of our bodies and wanting to control them. And as with all these situations, I think, where we create a scenario that makes us comfortable, what we're really scratching at is what it means to be human, what it means to live a good life, what it meant to have "good death". I immediately thought of birth. This is a thing people tell you all with birth, that you'll poop yourself. And everyone is just horrified by this. I never felt that. I didn't feel this complete and total horror that I might poop myself. People poop themselves for all kinds of reasons. It's just a bodily function. And I'm trying to figure out what are we getting at around dignity and autonomy that shows up so strongly even at this intense debate around our final moments that it all comes down to poop.

Beth [00:10:27] I immediately thought of birth as you said this too, and how I was not even aware that it happened. Because if you think about what giving birth is, how could you not expel all kinds of things in the process? And I feel like part of what I learned from giving birth that is a lesson that I return to all the time in my life, is that there are moments when autonomy even is a myth. When I was giving birth, there was no control of anything at a certain point. I tried to make decisions about my medical care and communicate what was important to me about the experience, but in the throes of it, my body was in charge and my brain was very much in the back seat. And I think about that sometimes as I think about aging and how many ways that scenario will show up for me again, where my body is in charge, my brain takes a back seat. Both of my paternal grandmothers who was really close to suffered with dementia and there were their bodies and their brains were in the back seat in a very different way. And I still think they lived with an incredible amount of dignity. And so putting those pieces together, that feels really hard and sad to me if our definition of dignity is a life where I never need assistance with just those basic bodily functions.

Sarah [00:11:59] Yeah, I think that's what was really tough for me reading this. Because I just had a conversation with my sons where we talk a lot about we are a family unit; we care for each other at different times. And yes, when I'm older, if I need help with my bodily functions, I expect you to do that. And Felix was like, "Gross, you want me to wipe your butt?" I said, "Boy, I wiped your butt for years. Literal years I wiped your butt." And he was like, oh, you know. Look, the scenario we all have in our head, I have watched people suffer tremendously. I do think it is abhorrent and it is certainly not fulfilling the oath to do no harm, to let people starve or cut off food or cut of water at the end of life. I had a friend whose grandmother it was like a week and a half without food or water. What is that? That is not a progression of society in any rubric to let someone waste away and call it ethical, death with dignity. So that to me is something completely different.

[00:13:20] And also, there's a lot of gray area around what doctors do in those moments already, right? If there is sedation and then we're cutting you off from food and water, what is that except for a type of physician-assisted death? But I remember thinking, and I've had scenarios that play out a lot in my life where I'm like the person is not conscious, we're just waiting for them to starve. This seems like the exact scenario for something like this. But you would have to decide months in advance before you got to that point. And I do think that that is a moment of a loss of autonomy and not just your bodily autonomy, but the sense of being a burden of having your family have to wait you out this way that surfaces for people. And I understand it. I would not want that for my family. I would not want them to have to wait for a week and a half while I slowly waste away.

Beth [00:14:28] I know that a large part of the conversation in Canada about the made program is whether people are choosing that option because they don't want to burden someone. That the prevalence might indicate inadequate structures in Canadian society. I don't know where the line is because I could see myself writing medical directives that emphasize not so much that I don't want to burden anyone, but that I don't want to go to the other extreme where there is this Herculean effort to keep me alive that is also cruel. And we do that a lot as well. And I want to be clear for doctors listening, I have so much empathy for the directives that families communicate, the way that some families are looking at a doctor as an antagonist in this situation, the way other families are looking for a doctor to make the decisions for them. What a complex career to face this all the time.

[00:15:36] So, to me, this conversation is about medical ethics. Yes, but it's also about policy and culture and then just our personal spirits. I kept thinking as we were preparing for this episode about autonomy and how the edges of autonomy get rounder and blurrier to me all the time because of life experience. I might've had a different definition of autonomy before I became the parent of a teenager where autonomy becomes a little bit of a dotted line. I think about autonomy as it relates to my own parents. I think how I will probably make different decisions at 60 than I would today about some of these questions. And then where do you age out of being able to see that clearly for yourself and your family? The notion of autonomy seems to be in flux in my own life; and so I struggle with how to build a policy that upholds autonomy around something like death with dignity.

Sarah [00:16:43] Well, the policy aspect of the United States, for years you didn't even have like a medical code for end of life conversation. So if a doctor wanted to sit down and talk about what do you want, what's important to you, there was no way to bill for that. Which means there was not way to have it in a lot of scenarios. And we all read Becoming Mortal by Atul Gawande. I loved that book. I think all the time about how he said, "If you ask me, can I do something? Is there anything you can do? The answer is almost always yes." The question is, should I? That's the question. Should I do something? And I think not only because we just read Democracy in America and now we're reading Habits of the Heart, which really spends a lot of time on the individualism that is just sewn into every seam of American life; I've been thinking a lot about that. And I don't really believe in total autonomy. I don't believe any human being stands separate from other human beings at really any moment in their life. And I don't think that any decision we make just affects us, because that's to me the promise of autonomy. It only affects me so I have the right to make it-- but it doesn't only affect you, ever.

[00:18:07] Even societally I take seriously the criticism from religious figures that say this cheapens life. I think that there is a real conversation to have in every aspect of medical ethics about what happens when we decide we can control this. That we have a right to control this. Because our interdependence means that there is not ever one simple outcome, ever. We can create this scenario in which we say death with dignity protects people from this nightmare we all envision where we waste away and slowly starve our loved ones who are not long for this world. Would that it would stay within those lines, but it doesn't. That's what they're seeing in Canada. And, look, this is true for medical ethic issues I take very seriously. I think a lot about what access to abortion and genetic testing means for people living with Down syndrome. Because what we see in countries where there is robust access to genetic testing and abortion is vanishing populations of human beings with Down syndrome. What does that mean? What does it mean if we expand this so dramatically?

[00:19:44] And I think this is the debate you see in Canada where we're not just talking about people who are terminally ill. We're talking about people like Daniel Kahneman who just said, "I'm 90 and I don't want to be here anymore." Who say, this mental anguish I'm under is too much and I shouldn't be forced to stay here. I mean, that's the language, right? Because that's the expansion in Canada- was beyond just physical suffering, but mental suffering. And then you have cases where disabled individuals are being offered maid assistance or veterans struggling with PTSD are being offered a maid. And that's in a country with nationalized healthcare. What does that mean in a county like ours? I was reading about a Belgium doctor that just recoiled-- Belgium, which has expansive rights to physician-assisted death. He recoiled at the idea of it being allowed in the United States, because we don't have universal access to healthcare.

[00:20:45] And so what does that means putting physician-assisted deaths in a countries where there's not universal access to robust health care, particularly mental health care. And I just think that these are incredibly complex questions because, again, we don't stay in that scenario where 70% of people go, of course, that should be allowed. It expands and it grows and the tentacles continue to reach because human lives aren't self-contained. They're complicated. The decisions affect other people. Societally, we absorb the message. And the message is about what is a good life? Who should have access to a good death? Should a good death, should death with dignity become another thing commodified that people with money have access to it? Those are the questions we have to ask.

Beth [00:21:37] And not only that people with money have access to it, but that there is an incentive to increase the number of people choosing it. I worry about that piece of it. I recently read an article that I can't stop thinking about called Stop Hacking Humans. It's from the New Atlantis, which is a pretty conservative journal of technology and society. It does some really interesting writing, always pushes my buttons a little bit, which is why I keep coming back to it because I like having my buttons push. But I will tell you that if you have very, very tender places, I would not recommend reading Stop Hacking Humans because it will push into all of those tender places. But this piece makes the point that in so many aspects of our lives we are chasing control and commerce has lots of answers for people chasing control. And that once commerce is involved, you're in a different world. And this article specifically talks about the Sarco pod, which is called like the Tesla of assisted death.

[00:22:46] It is essentially a gas chamber. It looks very sleek. There is expectation that eventually artificial intelligence will pretty well help people control those Sarco pods so that we can take other people out of the equation almost fully. And that sounds like just a horror show to me. To die alone under any circumstance, whether I'm choosing it or not, is not what I want. At least sitting here today at age 44, that's not what I want. And similarly, this article says we also have this whole movement of very wealthy people who are engaged in commerce chasing life forever, trying to lower their biological age to a point that it is not possible today, but that could be in the future. And that all of those attempts to exercise this level of control ultimately makes us devalue our own lives and experiences. And once we devalue our own life and experiences, there is no path that doesn't involve us doing that to others.

Sarah [00:23:56] Yes, look, there's no way for me to avoid the reality that I am a religious person and I believe that life is sacred. For reasons I do not understand and I will never understand. And so, of course, this informs how I think about this. Because the sacredness of life to me is wrapped up in the complexity of existence. I worry that what we're saying is that suffering is avoidable. And that suffering is-- I'm struggling to find the words. I don't want to say negative, because of course suffering is negative. I don't even think our language really has the complexity to get at what I'm trying to name here. When we say if you can escape suffering, if you have enough money to travel to Switzerland and escape suffering, as loosely defined, I'm particularly concerned about, I've just come to the end, I don't want to be here anymore. I'm 74, I'm 84, I am 90, I have 94, and I don t want the indignity of aging. What does that say to the people who are still here aging, who do not have access to that? What does that say to people who have suffering that is unavoidable? Or not even unavoidable because I think that's what it says. It says it's always avoidable. You can just leave.

Beth [00:25:58] I don't want to interrupt your train of thought. I just wonder if part of what you're also getting to is that suffering is the singular experience that you can have once it shows up. So I think that narrow band of circumstances that most of us think of when we imagine this and we say, yes, of course, people should be able to choose this, it applies to a moment in life where there isn't anything but suffering left.

Sarah [00:26:24] Right.

Beth [00:26:25] Where you really have reached a point where you cannot experience anything but suffering. Some of the articles that we read preparing for this episode indicate how many people are choosing this path at very-- 74 sounds very young to me to make a decision like this. And we read a piece that we'll link in the notes from a person who really did just decide, like, I don't feel enough pleasure to justify my existence anymore. And this will inflict a lot of pain on the people who love me, but this is where I see my life headed. I'm just ready to end it. And that concerns me. I know that there are many ways that a person in that situation could make the same choice that are a lot more violent and that people do make that choice all the time. Choice again feels like the wrong card. I don't know what word to use because again when you're so sad, when the chemistry of your very body is telling you things that only suffering is available now, I don't know that you're in a choice space. I guess there's a part of me that feels fear that we are building ways to sanitize and perhaps incentivize people following that path when I do believe that in most circumstances suffering is not singular, that other things can accompany suffering and that there will be another side of it. And I want people to live to experience that full breadth of the moment. I personally want to be willing to experience the full breadth of what being a person can mean.

Sarah [00:28:19] Yeah. I just think all of our thinking around this is truncated. I don't think that there is a scenario in which we couldn't get to a robust policy discussion and policy decision where physician-assisted death is a reality for people that I think contributes to humanity.

Beth [00:28:37] Yes.

Sarah [00:28:38] I think that is a realty that could exist. I don't think we're ready to go there, particularly in the United States. How are you going to have a robust policy discussion about physician-assisted death if 70% of people don't want to talk or think about death? This is hard. One of the things I most respect about Europe is that they don't do the Wild West we do. They don't go, "Let's just see what happens." Which I don't think is necessarily what's playing out here. I actually do see a more intense conversation and a more like we're going to start very small and see where we end up next in the United States in a way that is encouraging, but it's still taking place in a dismal healthcare environment. It's taking place during a time we distrust the institution of healthcare. It's taking place post pandemic where I would like to think we are capable of looking squarely in the face the complexities of life and death and what it means to live a good life or have a good death, but I have not seen that play out in other policy areas post pandemic.

[00:29:54] I just think that part of what informs this for me too, which is why I respect a more medically ethical discussion around all kinds of regulations around healthcare, is because I think in the United States we just take this approach of you just decide for yourself. And for lots of reasons, including my own lived experience and this is probably wrapped up in sort of my hesitation around the use of the word autonomy, I don't think we're always experts in ourselves. I'm not. I get things wrong all the time. I am a different person at 3 a.m. when a diabetes alarm wakes me up than I am at 9 a.m. after a cup of coffee. Different person. The level of despondency is markedly different. So what does that mean? If you catch me at the wrong time, what am I going to tell you I should do?

[00:31:09] We're so eminently influenceable by our own bodies, by our minds, by our lived experience, by the people around us, by our society, culture, history. We're just universes of complexity that I think assuming we can find the level of simplicity needed to make a decision you cannot take back is really hard for me to comprehend. Again, this is outside of the realm of actively dying, which listen, we all are. But I think as we get into these cases in Canada and the sort of physician-assisted death tourism happening in places like Switzerland, I become very uncomfortable.

Beth [00:32:23] So as I think about this in the United States, specifically, I don't know what our policy should be. I'm not advocating for anything in particular here because I don't know first where it would make sense to have this as a discussion of public policy. Certainly, I don't want Congress discussing this.

Sarah [00:32:44] They're not up for it.

Beth [00:32:45] They're not up for it. Our state legislature in Kentucky is not up for this.

Sarah [00:32:49] No.

Beth [00:32:51] I think there are medical groups that are and are having the discussion and are trying to figure things out. And that's probably the best we can do. But then as between physician and patient, you're right. There are a lot of discussions that doctors would like to have with us that can't be coded. And so we don't have them. I was just talking to a friend who is in this moment of trying to decide if health insurance is even worth it for our families. We were just discussing like the difference between self-pay and having insurance and what that looks like. And he told me about a time when he was doing self-pay and when he said that to the doctor, they said, okay, well, that's great because now we can discuss these things that we wouldn't have been able to fit into a regular well check.

[00:33:43] It just changes the game completely. Now, I am not advocating that anyone go without health insurance. I'm just saying there are a lot of often invisible barriers to having real discussions about what am I feeling about my own body and what am communicating to my healthcare professionals about that and what are they able to communicate back to me and what questions are being asked and discussed. Over a period of years, part of what really bothers me about the tourism aspect of this with Switzerland is it feels very unfair to me to ask another person to write a prescription or hand over a lethal substance, even if you're not actually administering it, when you don't know for sure that this feels right for this person and their set of values or for you and yours. It's a big ask of the people who are involved in this and especially, I think, if they never met you and this is the only context of this relationship.

Sarah [00:34:47] I think that this is another example, though, of how different we all are. It's never going to be simple. I don't think the physicians in Belgium or Switzerland hesitate at all. I think they have a very robust understanding of physician-assisted death and a cultural understanding that-- I'm not going to speak for every physician in Belgium or Switzerland, but from the reports I've read, they just see it very differently. That's fine. I'm angry about that. I'm really not. And as far as the United States, I'm comfortable where we are now. I am comfortable with some of the most strict regulations in the world. We have very strict boundaries on physician-assisted death. And I am uncomfortable with where they are now. I understand that saying six months; why is it fair to cut it off at six. You have less than six months to live if a person has 12 months to life. But you have to draw the line somewhere in policy. I think affirming someone's mental competence, it was really interesting to hear palliative care doctors say that sometimes just the choice, just knowing it's there if I need it, relieves an enormous amount of stress. Because a third of patients choose not to go through with it.

[00:36:05] About a third of patience pursue physician-assisted death, ultimately choose not to go through with it. I think that's something that raises a lot of interesting questions. If what we're doing is really just easing people's fears and anxieties around death; is this the only way to do that? I would assume that there are other ways of easing peoples' anxiety around death besides assuring them that they could have a physician-assisted death should they want it. And I think that to me is what this calls out for, especially in the United States. That's why I was so passionate about having this show. We have to just start talking about it. Everybody dies. I think what else this conversation I really struggle with is like, again, it's that consumption model; that this is another thing you could control. You could, yes. And also, vast majority of humanity they will not control the ultimate circumstances of their own death. I know that's hard to think about. I don't like to think about dying. I don' like to think about the fact that as much as I love my life and my children, something could happen.

[00:37:36] I had a family member who just did not wake up this week. He just didn't wake up. And that's heartbreaking. That's hard. But if we don't so much as talk about it or think about it, then when it does happen and it will happen, you will die. Someone you love will die then you're left with no tools, with no one saying I survived it. Or I didn't and I found peace from my decisions. The more we silence it or the more we channel our anxiety into the desire to control it, we just leave out so much. I think that one of the most powerful things that I've read recently was Marcus Aurelius' meditations. And he talks about whether you are a child or you are centenarian, when you die you lose the same thing- the present moment. That's it. It's gone. We all have the same thing and we all lose the same in death, which is the present moment. And we tie a lot of other things up in that.

[00:39:00] I found it comforting because so much of humanity over history and so much humanity going forward won't live what we've decided is a long life or a good life. They will die through accident or cancer or illness at very young ages. Doesn't it mean their lives weren't worth anything. It doesn't mean that that wasn't a life well lived. They've lost what we will lose when we die, which is being present right now. The past is the past, the future is always unassured. And there's this undercurrent here in this conversation that I think I'm like a horse with a bait because I just feel like there's a narrative here, where we're ascribing value in a way to bodily functions that everyone has, that some people lose and still live good lives, that suffering that people make meaning of or don't but still contribute to humanity. I think there's something here that is heartbreaking to me because it feels like it is a really lacking way to get at what is life and why are we here? And, of course, policy is always going to be the worst tool in which to have these conversations. But particularly the expansion and the controversies and the high profile narratives around this. I read a nurse in Canada say that it's robbing us of hope. It's robing people of hope. And I think that that just breaks my heart.

Beth [00:41:06] We're having this conversation on a week too when our secretary of health and human services has made some truly ignorant comments about people with autism and took this giant umbrella that encompasses people with all kinds of different life experiences and reduced it extremely narrowly. And then within that narrow band of people, some of whom will never wipe their own butt, said that that is a life devoid of dignity, essentially.

Sarah [00:41:48] That it's a problem to be solved. That it's something to be cured. That's the really offensive nature of it to me.

Beth [00:41:54] That we should be able to control all of the ways in which people exist. And I'm connecting these dots in such an awful way that if someone like me who has been able to live relatively autonomously looks to the end of my life and says, well, I wouldn't even want to go on if I can't continue to live this exact way, what am I saying about the value of the life of a person who has never had that level of autonomy? And that's why it's so connected to me and why I have a lot of libertarian leanings where I do think at the minimum, I don't want the government setting any kind of policy around these life decisions. But as a culture and as a society and as people who want to ground our principles and ideas in something, I think just that acknowledgement that people exist in a whole lot of different ways for long, long periods of time and again it is not a singular experience. A person who has never had the level of autonomy that I have has still contributed. They have experienced joy; they have created joy.

[00:43:19] They have experienced compassion; they have extended compassion. They have enriched us by being, even if they have not been able to be in the form that we talk about as aspirational. That's what upsets me about Secretary Kennedy so much, because if you listen to him long enough, it's as if being in a form that's not aspirational is unworthy of being at all. And that is not how I see the world. And that has influenced how I view this topic because as much as I absolutely believe, I agree with you fully, there are circumstances where this is the kind, compassionate, human, ethical option. And again, I struggle on option. I hover there because I don't know that there is a right word. But I think that we do have to hold that so cautiously, especially as we think about what we want for ourselves and make sure that we aren't devaluing other people and their life experiences in the process.

Sarah [00:44:35] Yeah, because I think for me this is all so tied up in the ever-expanding biomedical technology. Where I was just reading that Japan is on the cusp of curing a lot of diseases. I think about this all the time with Felix. The one way it comes up a lot is his camp. He goes to Camp Sweeney in Texas. And so whenever a cure comes up, he goes, "I could still go to Camp Sweeney, right?" So what does that mean? Think about that. What does that mean? I want to cure this disease but I still want the belonging and identity and community that came to me via this disease that has exacted a lot of suffering on my 10-year-old child. But that's complex, right? That's hard. And that's with curing diseases that, of course, we can all agree if it shortens someone's life or it leads to pain and suffering, okay, let's do it. But it doesn't stay contained in the ethically comfortable situations. That's what we see with reproductive technology. People are selecting for gender. People are selecting for looks. People are selecting for intelligence. People are selecting for all kinds of things. What does that mean? What does mean? What are we saying? When we're saying some people with enough resources can have the exact type of child they want. That is very complex.

Beth [00:46:24] And what would it mean to me if I were born to parents who chose those factors about me the first time of many that I inevitably disappoint them? When we try to control for all of these things, we can never have ultimate control. And I just wonder what we're saying. You know what it makes me think about this? This probably feels kind of far afield, but this question that has haunted my life is that I was in this car accident when I was 17 and a person died. And the accident was declared to not be my fault. And people said that to me all the time. Well, it wasn't your fault. And for all of the years since that accident, I have thought, but what if it had been? What would that make me? And what would that mean about me? And what that mean in our relationship? And it really lingers as this existential question for me. And so I think if I were born and I learned at age, what, nine or 10, well, you're a girl because we wanted a girl and you have blonde hair because we really wanted blonde hair. And it's curly because my hair is curly and I really wanted yours to be curly, too. What would that tell me about the grace available to me as I move through the world and do things that were not selected? I think we're eroding a lot of autonomy for future generations by trying to exert this level of control ourselves.

Sarah [00:47:56] There is something beautiful in being wanted, I suppose. My mother told me my whole life I wanted a redheaded girl named Sarah. I think about that a lot. I think that because I had a lot of gender disappointment with my own voice. What does that mean? What did they hear from me when I said that? What was I really struggling with? I've really come around on the Catholic Church's view of so much reproductive technology. Not that I think it should be illegal or that I you're going to hell, but that it is a commodification that is very concerning. It is a commodification of babies and life. And if you have enough money and enough resources, then you can get the baby you want. Babies turn into humans though, and then they get very complex. And it's even complicating my own medical ethics around abortion. There's a new study that's talking about scans from scientists. This was in nature, I believe, that they have found in brain scans evidence of consciousness at the end of pregnancy. Well, what does that mean? And I think I'm really coming around and being honest with myself when it comes to abortion, because I think it's hard to think about physician-assisted death and your feelings around the sacredness of life and not get swept up in all these other medically ethical complex questions, which is that it is a competition of interest that an abortion that is so complicated.

[00:49:27] It's not that I think it's a life from the second sperm meets egg; even in my most medically, ethically complex moments, I don't believe that's true. I don't think it's a light switch at all, which is what makes it so incredibly complicated and ethically difficult. But I think when we try to sort it out easily and quickly, we lose the beauty of not just our lives, but the ethical calculations we are capable of making as human beings. Not because we'll find a right one, not because we will always agree, but because it is that dance of what is a good life? What is a Good Death? What is autonomy? That I find so beautiful. It's what I love the most about being here. That's why I like medical ethics. So I'm a person that leans in with this hard stuff and who-- actually I'm not even telling them the truth. I do think about my own death a lot because I had an incredibly heartbreaking experience at a young age, just like you did, that said like, no, this is a thing that can happen at any moment. And so that dance and that conversation and that weighing is something that I find deeply interesting and deeply beautiful. I'm not interested in anyone who thinks there's an easy answer to physician- assisted death on one end of the spectrum or the other, just like I'm particularly interested in anyone who feels that way about reproductive technologies or abortion or euthanasia when someone is in a coma. It's hard. But the hardness to me is paradoxically what makes it so beautiful and important.

Beth [00:51:53] Yeah, everything that you said about birth is true about death as well. It's not a light switch. It is a competition of interest. Always. And there are huge segments of it that are just unknowable. We have very few things left that are unknowable. But the other side of birth and death, that's it. And so I agree that I love talking about this kind of thing. I think it's really important. I feel very resistant even to a place that I've been before, which is like if you give an inch, they'll take a mile. Which I think is a position that people in both camps feel. That it's too hard and we don't trust each other with it. And we certainly don't trust people in positions of power. And so if I give an inch, they'll take a mile. And I just think that especially because of our capacity continuing to increase and how we influence these things, we've got to risk it. We have to give some inches and expect others to do the same, to do our best to lay down some markers that we all agree, whether we're religious or not, say something important about what we believe it is to be human and what we owe each other in these really fragile moments and these moments that the veil gets awfully thin around.

Sarah [00:53:29] Well, the unknowability is what we're battling, really, ultimately, right? And I think that's why I'm like a horse with a bait when I hear someone in some of the reporting on Daniel Kahneman, a brilliant man, behavioral economist, like if I'd known that was a thing, I'd have studied it. Like that would have been my major. I find it endlessly fascinating. And just the cool-headed calculus. I thought, "How could you?" It's a weird egotism to me to think I've got it all sorted out. I guess that's probably what I'm pushing the hardest against. And I guess really what they're saying is I've sorted it out for myself. And I understand that. Again, policy-wise, I'm not looking to rob someone of that. I'm just not looking to make anything illegal. But I am looking to question it and to ask; and not to say because that's the wrong choice or they're a bad person, just because I think it's important to talk about. And I think the unknowability is the most entrancing part to me. I remember vividly. And it probably was around the shooting or maybe it was even before then, I thought. I'm just too curious of a person. I don't have existential dread because I'm so interested in what happens next. Not looking to get there any sooner. I'm really not. I love it here. I love here. But, man, there is a part of me that when I read that 70% of people don't want to think or talk about death, I think, why? It's such a mystery. Aren't mysteries beautiful? They're so beautiful to me. And the same for birth. I definitely felt that. The mystery of it.

Beth [00:55:25] I don't want to evangelize here, but we are releasing this episode on Good Friday. And we are both Christians. And I've been having a lot of conversations with my kids about Easter this week and what I think Easter really is about. And I think that what I always want to communicate in any conversation, especially one that hits on mental health and moments in life when you think I just don't want to go on, is what I take from the Easter story. Which is not some kind of literal form of like Christian magic, but this story that tells us, I get it, you will feel like you can't go on and people will betray you and you will feel abandoned and anxious and angry. And all of that belongs, and you are never as alone in it as you feel like you are. And there is always something on the other side of it. And what that something is will change its forms throughout life and throughout death but there is something on other side of it so don't give up because you are not having a singular experience when you feel like you don't want to go on. That is just another piece of being human and being alive. And so I want to make sure that whenever we're talking about what is generous and kind to people who are saying, "I don't know that I can go on anymore," is that we hold space for whatever that thing is on the other side of that. And make sure that we don't rush to determine there is no other side.

Sarah [00:57:15] Yeah, I think for me faith is just that there is an interconnectedness and that I just don't know. Faith to me is ultimately about the humility of understanding there are things that I cannot control and there are things I do not understand and then I'm not a fortune teller. On the other side of suffering could be more suffering. That has certainly been the experience for a lot of humanity. There's a beautiful piece in the New York Times Magazine about Holocaust stories and what does it mean to tell someone's story of surviving the Holocaust? What does it mean to survive the Holocaust? What does that mean to witness and to survive that level of depravity and cruelty and hatred and violence? There's not an answer. Of course, there isn't. But there are stories and there are people, and there as many questions and answers as there are people with stories.

[00:58:29] And to me, that is the gift of being human. And I do believe it is a gift. And so any policy or life experience that allows me to think about that or examine that, particularly to do with you and with this community, I'm really grateful for it. Sorry we put this show off for so long. For Outside of Politics, we're staying on theme. There was a piece in the New York Times about how to be a happy 85-year-old, because a lot of the stories we read were just about the indignity of aging and how hard it is. And we really loved the very practical black and white suggestions from the author of this piece about ageing and and how to enjoy it.

Beth [00:59:35] Super practical. For example, they just say get a dog. Just do it. Get a dog. I think that's correct.

Sarah [00:59:42] I love dogs. Everybody loves dogs-- not everybody. But yeah. I don't think the ancient Romans like were really into dogs in any history I've read, but when you talk about Marcus Aurelius in a focus on the present, dogs help with that because they're not worried about the past or the future. They're just here with you right now.

Beth [01:00:08] My favorite sentence in this section is no creature on earth will ever find you more fascinating than your dog does.

Sarah [01:00:15] My Cookie is so obsessed with me. She's obsessed with me. It's ridiculous.

Beth [01:00:21] I also was really compelled by the instruction to not hear the cheers.

Sarah [01:00:27] I love this. This is a piece of advice I got from Hillary Clinton. I don't take the criticism personally because I don't take the praise personally either. It's good advice. You can't pick and choose. If you want to be at least not dramatically affected by people's criticism of you, then you also can't be dramatically affected with their praise. I know we've gone almost an entire episode without mentioning Donald Trump, but he's a true really good example of what happens when the praise is so important and the criticism is just psychically unbearable. You know what I mean?

Beth [01:01:10] Another piece of advice here is make young friends. I think about this all the time. Chad and I coach academic teams- elementary and middle school. And sometimes people will ask, like, are you going to stop when your girls are out of elementary and middle school? And we're always kind of like, why would we do that? We love this. And it's really important for us to be around young people. A lot of them. Not just our own, not just the two that we made and are influencing all the same, but just other young people. It does change your brain to be in relationship with people who are of a different generation, who are having different life experiences, who are obsessed with things that do not matter to you anymore.

Sarah [01:01:50] Chicken jockey for example.

Beth [01:01:54] There's just so many benefits to keeping intergenerational company. And I think that applies to make older friends. I would say make older friends, make younger friends. Make sure that you are not just in your own demographic in terms of your friends.

Sarah [01:02:08] Yeah, it gets easier as your kids get older, too. I just think that there's like an absorption when your kids are younger with parents that are in it in the same way you are, but there's a lot of freedom and space to do that as you get older. I like being around my kids and their friends. And you're really talking to younger friends though if you're talking to middle schoolers. I don't know if I'm looking to hang out with middle schooler my whole life. I'll be honest with you.

Beth [01:02:32] Friend is not the right word for what that relationship is, but it is good to be around young people. It is good to have a relationship with young people, I think. And there's a lot of freedom as you get older to do it, but not a lot a structure. So I think what I want to hang on to is that structure that keeps us around younger people. Even teachers are younger than me at this point. I talk to most teachers and they're like 20 years younger than I am. So it's good to have that routine and ritual that keeps us in those spaces.

Sarah [01:03:00] I mean, not for nothing I think one of the biggest problems in modern life is the lack of intergenerational gatherings. I think it is so important. I don't even mean like, oh, I think it's important. I think it's how we evolved to live over millions of years and we don't do it anymore. And I think it’s really bad. That's why it's a huge reason I belong to a church congregation because I think it's so important to be in intergeneration spaces. I think that part of the reason people feel really lonely is because so often we are around just people our age. I think it's one of the big problems with our education system. I think kids evolved to be raised and influenced and taught by kids a little bit younger and a little older than them as much as they did by teachers. Obviously they didn't evolve to be taught by teachers, we made that up in the last hundred years. I just think it's not just like, oh, Sarah thinks it's important. I think it's how our brains are meant to function. I think it’s how our spirits and souls are meant to function.

Beth [01:04:04] Lots of other advice here, but very relevant to this conversation as we wrap up, is just to know that everyone's in pain. And the author says, "If you didn't know that before, you know it now. People you meet casually, those you've known all your life, the ones you'll never see, everyone's in pain. If you need an excuse for being kind, start with that."

Sarah [01:04:26] Well, thank you for being with us today. Don't forget, you can get a virtual ticket to our Cincinnati live show through the link in our show notes. We'll be back in your ears with a new episode on Tuesday. Until then, have the best weekend available to you. And thank you for trusting us with this conversation. We really look forward to hearing from you.