A Good Life, A Good Death with Dr. Lydia Dugdale

How do we prepare now to die well? Can we reimagine care of the dying in all of its messiness as a gift? 

Dr. Lydia Dugdale, a medical ethicist, internal medicine doctor, professor, and author of The Lost Art of Dying, talks with Amy Julia Becker about:

• Disability
• Death
• Medical assistance in dying
• Honoring all human life as the gift it is without idolizing life

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Guest Bio:

“Lydia Dugdale MD, MAR, is the Dorothy L. and Daniel H. Silberberg Associate Professor of Medicine and Director of the Center for Clinical Medical Ethics at Columbia University. Prior to her 2019 move to Columbia, she was Associate Director of the Program for Biomedical Ethics and founding Co-Director of the Program for Medicine, Spirituality, and Religion at Yale School of Medicine. She is an internal medicine primary care doctor and medical ethicist. Her first book, Dying in the Twenty-First Century (MIT Press, 2015), provides the theoretical grounding for this current book. She lives with her husband and daughters in New York City.”
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Connect Online:

• Website: lydiadugdale.com

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On the Podcast:

• Book: The Lost Art of Dying: Reviving Forgotten Wisdom

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Interview transcript and more: amyjuliabecker.com/lydia-dugdale

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Season 6 of the Love Is Stronger Than Fear podcast connects to themes in my latest book, To Be Made Well, which you can order here! Learn more about my writing and speaking at amyjuliabecker.com.

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*A transcript of this episode will be available within one business day on my website, and a video with closed captions will be available on my YouTube Channel.

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Thanks for listening!

Transcript

Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker:
I'm sitting here with Dr. Lydia Dugdale, who is my guest, and we're here to talk about her book, The Lost Art of Dying, Reviving Forgotten Wisdom. Lydia, thank you so much for being here today.

Lydia S Dugdale:
Thanks for having me.

Amy Julia Becker:
I thought I might ask you to start with, before we dive into the themes and topics within your book itself, I would really love to hear about your day-to-day work. Because as far as I can understand it, you're both a practicing physician and an ethicist, and you're speaking in various places, and you're writing books, you're doing all these things. So what is a typical week of work in your life comprised of?

Lydia S Dugdale:
Well,

Amy Julia Becker:
No!

Lydia S Dugdale:
I suppose it's variable. About half of my time, I'm a clinical ethics consultant. So I'll be called into the hospital to assess whether we're doing right by a patient, given all the different variables involved there. Well, 10% to 20% of my time, I am either a primary care doctor or a physician. and internal medicine doctor on the inpatient medical wards here at Columbia Presbyterian. And then I do a lot of teaching, both formally in the curriculum and outside of the curriculum. And then, yeah, try to write and speak and, you know, run around and do those sort of academic things. So, yeah.

Amy Julia Becker:
So what's an example of, if you're allowed to tell us this, like one of those questions that you'll be called in to consult about?

Lydia S Dugdale:
So an example might be a patient is diagnosed with some sort of terrible cancer and isn't willing to accept any treatment because she's convinced that she doesn't really have the cancer. And then it might be, well, you know, what lies behind those beliefs? Is this a form of mental illness? Is this a method of coping? If there is some degree of mental illness, would we proceed with treating over her objection? If we're considering treating over objection, what does treatment entail? Certainly, we wouldn't, you know, treating a urinary tract infection over objection is very different than six weeks of chemotherapy or six months of chemotherapy or, you know, 30 treatments of radiation. So those are the sorts of. Questions, there's all different kinds. There's a lot of end of life questions. Do we put a feeding tube into a patient with advanced dementia? Do we remove life support if everybody is very clear that the patient is actively dying and life support is just going to maintain sort of the vital functions while we wait for death? There's some of the answers to these questions are stipulated by legal considerations. So in New York State, for example, where I live and work, we are not allowed to unilaterally remove life support, no matter how poor the prognosis. But so anyway, sometimes I just have to clarify legal questions for the medical teams, but that's my role as a clinical ethicist.

Amy Julia Becker:
And your background, I know you have, like you are a medical doctor. Do you also have like official legal ethical training? Like where does that come from?

Lydia S Dugdale:
Sure. So, you know, the old school was that you got clinical ethics training in the hospital. And there still is a version of that. We do train our clinical ethics consultants here at New York Presbyterian Hospital. There's a sort of training program that they have to go to go through and then perform a certain number of clinical ethics consultations with oversight. They sort of present them to the senior ethicist. So that is part of it. I've done that. I also have a master's degree from Yale Divinity School, actually, in ethics. So that gave me a lot of my sort of philosophical, somewhat quasi theological, more philosophical sort of underpinning to bioethics in particular. Yeah, so I'd say that those are the kind of two big ways that I am trained.

Amy Julia Becker:
That's quite a combination. And as I've now read your book, I've got a sense of some of those questions, especially as it pertains to end of life issues because you've written a book. Again, I'll say it again, The Lost Art of Dying, Reviving Forgotten Wisdom. And I am curious both from like a personal, you know, experiences from your own life and also social needs that you see in our culture. Like what are... what compelled you to write this book in terms of both, I don't know, experiences you had, as well as any needs in our culture that you're seeking to address.

Lydia S Dugdale:
Sure, so the book starts with a patient that I took care of. And he was a gentleman. I met him actually as a dead body before I met him as a human life. He was, his heart had stopped. He was on the cancer floor, very elderly, rather emaciated and wasted from his advanced disease. And his heart had stopped. And I was on the team at the time who was assigned to respond to the overhead code blue pages. And so. we went and we resuscitated him successfully. However, given his very both advanced age and advanced cancer, we knew that it would only be a matter of hours likely before he he would die again before his heart would stop again. And in fact, that's what happened. And he died a second time, his family was very insistent that we attempt to resuscitate him a second time. And then we did that. And then the third time he died, we were not able to resuscitate him but It was stories like this, as well as stories of patients of mine who went through intensive care unit stays, either as family members or as patients themselves, people who've experienced sort of the prolonged struggle of the hospital, where it got me thinking, not so much that we shouldn't make use of this technology. I'm a physician and the technology is incredible. It's incredible

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
what we are able to do. But what I sort of longed for was a more judicious understanding of the benefits of the technology and how the technology might help, especially help lead to healing and a restoration of relationship and community,

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
as opposed to merely delaying the dying process. It's a very, very difficult line to draw. Doctors are poor prognosticators. Patients we know from the studies are apt to overestimate the benefit of treatments and underestimate how much they take out of you or take out of your family. And patients also have, many patients have sort of a deep belief in miracles and I do too, but in the possibility that, you know, this will be a miracle for me. And, you know, while miracles happen, it's not everybody every time. And so I think these things, it just makes it a very fuzzy picture. Then there's also mistrust of the medical system. A lot of marginalized populations have really suffered at the hand of the medical system. There's a long history in medical ethics of experimentation, et cetera. So those kinds of things. combine, they coalesce to make this question of what is judicious healthcare use, particularly at the end of life. It seems to me a more urgent question. And then this, at the time I wrote the book, physician assisted suicide and euthanasia were sort of on the margins. That's really becoming more mainstream now with what's happening in Canada. So it seems to be that there is a... graver importance. There's more urgency that we discuss these things now because the alternative really is just to sort of euthanize people when they are towards the end and we see that happening in several parts of the world and it's concerning. So people need to be equipped to think through these things clearly.

Amy Julia Becker:
Well, one of the things I appreciated about your book and also some Podcasts I've heard you on and email exchange that we had is just that there's this It's not a tension but there are different ways to approach These questions about death because one is kind of I don't know if unnecessarily is the right right word, but painfully prolonging life, like your example of, I think, was it Mr. Turner, his

Lydia S Dugdale:
Mm-hmm.

Amy Julia Becker:
name in the beginning of your book, who

Lydia S Dugdale:
Yes.

Amy Julia Becker:
was resuscitated these multiple times only to die again in this painful way. So there's this painful prolonging of life, but then there's also this kind of instinct to shorten life in terms of euthanasia, both of which pose their own ethical problems when it comes to really valuing human life. And so on the one hand, we're making it longer, and on the other hand, we're making it shorter, and both of them have problems. And I think it's really important to be addressing from both sides the concerns, not only that have to do with those individual humans, which are very real and present, but also what does this actually, the decisions that we begin to make around individual human lives when it comes to death and dying have an impact on our. social fabric on our communities, on the way we value one another outside of these particular ethical decisions that have to be made one by one. And I think that's where, certainly one of the reasons I wanted to talk to you was in thinking about the physician assisted suicide, euthanasia conversation in Canada and the United States. And we'll get back to that. But part of what I think was important in your book was that you were writing a book about preparing to die. and in calling it the lost art of dying and this sense of there's actually a way to do this and we've lost it and if we can regain that way of looking at not just looking at death but preparing to die we will actually be regaining something about living well so i wanted to just start by framing this conversation with the what's the relationship between dying preparing to die and living well

Lydia S Dugdale:
Yeah, so thank you for that. So I was perplexed about these questions of my patients dying poorly, or their family members dying poorly, not being wise with what is possible. And I was turning this question over and over and over in my mind, thinking that there had to be a better model. And so I was reading all kinds of things. about end-of-life care, end-of-life treatments, what are the models out there? And there was a mention in passing in one of these books about the Ars Moriendi, which is Latin for the art of dying. And it referred to it as handbooks on the preparation for death. And so that sort of steered me into a deep dive on the Ars Moriendi. And it turns out that starting in the very early 1400s and lasting for more than 500 years, there was a fashionable genre of literature called the Ars Moriandi that initially was tied to the Western church. This is kind of pre-Reformation. So the Western church, but eventually took on after the Protestant Reformation took on Protestant iterations and then Jewish versions. And then by the time at any rate of the US Civil War at least as documented by the historian, Drew Faust former president of Harvard. The Ars Moriandi was part of mainstream society. So whether you're from the north or the south, whether you're religious or not,

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
preparing to die was part of being brought up well. But as you indicated, it wasn't just about the end. Because the idea was very much throughout all of these versions of Ars Moriandi literature, the idea was very much that if you want to die well, which everyone purportedly did, then you had to live well. Because living, the sort of, The habits that one takes on, the character traits that one acquires, the practices that one adopts over the course of one's life lead to sort of being a person of robust character, of virtue, of having the relationships that one might aspire to. Those are all intact then at the end of life. But if you sort of live your life without any view to the end game, then you arrive at death unprepared. And so in the earliest versions they thought, and this was pretty common in the first couple hundred years of the Ars Moriandii that there were sort of five main ways that people died poorly, including impatience, doubt, despair, pride, and greed. Those were the big five. And so earliest versions of the Ars Moriandii then said, you need to actually cultivate the opposite. You need to cultivate a posture of hope. You need to cultivate

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
a posture of generosity, virtues of patience. So these, but you don't just do it at the end of life. You do this over the course of your life. Then you live a better life and you die a better death. And of course, undergirding all of this was that it was not to be done in isolation. It was always the work of a community. People live and die well best in communities. We know that that is true. There's sociological literature, certainly medical literature that shows that people in isolation have much poorer. health outcomes, much more likely to die of heart attack and stroke if they're socially isolated. It's just true, right? So we have this evidence to show that. And of course, for hundreds of years, this was the teaching in the West at any rate that living well is intricately tied to dying well, and that's best done in the context of community.

Amy Julia Becker:
Yeah, and so with that perspective of the Ars Moriandi, can you talk a little bit about the ways in which we have moved away from that and why that's happened? And I'm interested especially in you speaking from this clinical setting because certainly, I mean, it seems to me that some of these wonders of modern technology that we have are also part of why we are not. living and dying well in community and in the ways that you just described.

Lydia S Dugdale:
Sure. So, so before I, so let me just say that the technology, the rise in the technology is actually tied to what happened about 100 years ago. And since we're just kind of coming out of the covid pandemic in various ways, I'll say this, that the the big drop off in the ours, more Andy, as a genre of literature occurred in the 1920s. Why the 1920s? Well, 1914 to 1918, we have World War One, massive loss of life, not just soldiers, but civilians. Women and children, millions and millions of civilians died in World War I. So there's a devastating loss of life. And even before the war ended, right, we have the outbreak of the flu pandemic of 1918 to 1920. So what that means is that there, and I'll just say in contrast to COVID, right, the flu pandemic actually took many, many, many young people's lives. There wasn't the sort of preferential targeting of older folks or sicker

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
folks. In fact, there are autopsy reports of young soldiers who were fighting in World War I whose lungs were just like sponges because they were so full. They were essentially drowning from the inflammation created by the flu pandemic, created by the flu in their lungs. So we have six years of sustained global death on a scale of millions of people. And coming out of that in the United States, at least, not necessarily true for Europe, immense economic boom, the so-called roaring 20s. And so in the roaring 20s, it became about building, about new forms of music, new forms of dance. Women cut their hair, they shortened their skirts. They did not want to dress in mourning. They did not want to hang ribbons on the door of the house to signal that a child or an adult had died. There was this push into just maximizing life,

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
sort of death and dying be damned. It was just,

Amy Julia Becker:
Huh.

Lydia S Dugdale:
let's just. forget about this need to think about our mortality. Those are the old ways. We're moving on from the old ways. And even if you look at the text of homilies and sermons that were preached from the early 1900s through to the 1920s, you see a vast turn in the churches and in clerical settings away from talk of needing to prepare for death. So in that context then, We also have a significant rise in the number of hospitals. In 1873, so just after the Civil War, there were about 200 hospitals in the US. And by the 19 teens, there were more than 6,000, which is slightly more than the number of hospitals we have today. So we, a

Amy Julia Becker:
Wow.

Lydia S Dugdale:
huge number of hospitals. And then on top of that, in the 1920s, penicillin was discovered. And that meant that previously lethal infections now were easily treatable. And antibiotics were really in widespread circulation by the 40s, which is when we also see the introduction of chemotherapy. By the 50s and 60s, we are experimenting with early cardiopulmonary resuscitation, mechanical ventilators, breathing machines, and organ transplantation. And then by the seventies, there's combination chemotherapy. So for anyone born, you know, baby boomers and younger, the idea that death would get you

Amy Julia Becker:
Mm.

Lydia S Dugdale:
as a younger person at any rate was just sort of out of the question. Death was for old people. And, you know, and in 1965, when Medicare was passed, no longer was death really for old people because old people all had access to medical care. through Medicare, which was introduced to prevent these sort of older folks dying in their homes because they couldn't afford to go to the hospital. So we moved away from it. And then with the rise of the hospital and the birth of antibiotics, it made it possible then to send a dying family member, dying loved one, to the hospital rather than care for them at home. Because there are hospitals everywhere and who knows? maybe there would be a treatment available, right? So why would you let someone die at home when the hospital might have something on offer? And of course, that's sort of the story. Most of us do not care for dying people in our homes.

Amy Julia Becker:
And though, you have a statistic in your book, I'm not gonna get it quite right, that something like 80% of us want to die at home but die in the hospital. I mean, I'm not quite right on that, but there's this disconnect

Lydia S Dugdale:
Yeah.

Amy Julia Becker:
between where we want to be and yet where we end up dying. And you do a wonderful job, I think, of demonstrating that it is not a bad thing to choose to be in the hospital to die. And yet, most of us, when we do that, it's like we didn't really know what we were deciding. either individually or in terms of families. And so there's again, just some measure of whether it's ignorance or denial that is keeping us from addressing and being well-prepared for these moments and that are going to come to all of us and to the people we love.

Lydia S Dugdale:
Yeah, that's right. Yeah, most people say they want to die at homes surrounded by loved ones. And the majority still, as of the most recent research, die in institutions. Now, not necessarily hospitals, but also nursing homes

Amy Julia Becker:
Okay,

Lydia S Dugdale:
or hospice institutions

Amy Julia Becker:
yes,

Lydia S Dugdale:
themselves

Amy Julia Becker:
yes.

Lydia S Dugdale:
increasingly. But yeah, but most people don't. And it's not wrong to die in the hospital. One story I tell of a dear patient of mine, she had a terrible lung condition you know, she gave her a very poor prognosis, which she outlived by miles. But ultimately, even though she had everything set up to just sort of flourish in her dying at home, ultimately she just felt the sense of suffocation as this lung condition really just encroached

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
on her. She felt so much more peace being in the hospital. And there are all different reasons why that may be true. So this isn't to set, you know, set the hospital up as some sort of, you know, thing we need to attack and tear down, not at all. It can have its place, but... people should sort of go in eyes wide open as they think through these questions.

Amy Julia Becker:
Yeah, I do want to get to the euthanasia question in a minute, but I'm going to tell a little bit of a story on my side because I had this unusual experience as a, I think I was 24 or 25 and my mother-in-law was diagnosed with primary liver cancer. She was 54,

Lydia S Dugdale:
Mm.

Amy Julia Becker:
55 years old at the time and was a single woman. And so my husband and I just through a series of circumstances became her primary caregivers. And she had worked running a hospice. program in New Orleans, which is where she lived. So she was, I think, more perhaps prepared to face what was pretty clearly a terminal illness than certainly than we were. And so she was more able to make decisions. She decided to do surgery and then to do chemo, but at a certain point she said, nope, I'm gonna get ready to die. And it was not a long prolonged illness, but she took the time that she had to gather family and friends, to ask forgiveness, to forgive people very deliberately, to talk with me as her daughter-in-law. She said, look, you know more about, you know, I believe in heaven. I believe I'm going to actually be in a relationship with God outside of this life, but I don't know much about it. So can you tell me about that? Because I was in seminary at the time. And so we had these beautiful conversations and there was really this sense of her, to your point, preparing well to die but living so well into that death. And then we did call in hospice. I mean, she told us about a month before she died, it's time to call hospice and we did. And they were able to get us set up in her home for those final weeks of her life. Some of which were brutal moments and other moments within that were incredibly beautiful. And so reading your book just really brought me back to that. time and to recognizing how unusual it was. On the one hand, it felt very, almost old fashioned, right? To have this family that she never, she didn't go to a doctor's office after she stopped the chemo. Like it was, she knew I want to be done with that type of care. And yet she received a lot of care. And it's not that there were no medical people involved in her life. And it did, I think, allow for a different, way of dying for her and certainly a different way of saying goodbye and being present to her throughout those final weeks and months of her life. And then what was interesting, and this will perhaps get us into this next topic, the final day of her death, however, was really, really, really hard. She had been in a light coma for a couple of days, which was nothing like what I'd seen in movies. And, you know, she seemed to be unresponsive, but was still moving and groaning. And there were fluids coming out of her. her body and it was really, really hard. And at a certain point, her mother actually said, if she were a dog, she would not be alive right now. Kind of like, why are we treating this human being as if she has to just keep suffering? And so Peter and I, my husband and I talked about this and he went for a walk with his brother because we all thought, should we call a doctor and ask if they can just do something to... essentially put her out of her suffering. And his brother, for whatever reason, I wasn't a part of that conversation, said, no, we let this run its course. Mom chose hospice, this is what we have made the decision to be a part of. And at the end of that day, a woman who had been helping doing light housework and light nursing care who was in the home went over and said to her, Ms. Penny, it is time for you to go home now. and

Lydia S Dugdale:
Mm-hmm.

Amy Julia Becker:
she opened her eyes and her sons came in. They had literally come back from this walk in which they had made this decision to just be with their mom until she went. And she couldn't speak, but she looked them in the eye and she blinked three times and she died. And so there was just this sense of this holy moment that, I mean, the way I interpreted it, I have no idea if this is what was actually happening, but was that she fought all day to be able to say goodbye to her sons. And they got that moment and we got that moment and it was really beautiful. I know that's not how death always happens. It was also brutal and horrible. So it was all the things. And then after she died, the women who were there cared for her body, which again, you bring up in your book, just this need for ritual. And we kind of just knew what to do. No one had done this before, but there was a sense of, okay, we're gonna put her in a clean nightgown and we're going to clean her body and then we'll call the funeral home. And we went from there. But that experience for me as a young 20 something kid essentially really has shaped the way I think about life and death and all of these different ethical questions. And they were all brought up for me in reading your book. So I bring all of that up as a way into this conversation around medical assistance and dying, right? Around this legislation in Canada, and again, in various places in different forms within the United States. So I'm... To get there, could you start by giving us like a kind of 20,000 foot view because I'm sure there are listeners who don't know. And I'm not sure, I mean, I certainly don't know all the details, but the difference between euthanasia and physician assisted suicide and how this is working out in Canada, why there are new ethical questions being raised in terms of the legislation there and who it pertains to. So could you just give us that kind of big picture and then we'll dive into it a little bit?

Lydia S Dugdale:
Yeah, sure. So I'll give you the 20,000 foot view, but let me first say on the question of giving people permission to die, it's actually really interesting. It's far more common than you would think.

Amy Julia Becker:
Mm.

Lydia S Dugdale:
And often families are reluctant to say it and patients have never died before, right? So

Amy Julia Becker:
haha

Lydia S Dugdale:
they don't know that this is a thing, right? Because we don't see that much death. It's actually really common.

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
And that's why it was the woman who was there attending, right? Who knew to give, I guess, your mother-in-law permission to die. I think as you said, that last day of fighting, it was a fighting. She just needed to know it was okay. And we see this all the time, actually. Just tell mom she can go now. Just tell her she can go. You tell mom she can go. And she goes. So it's sort of, that's another kind of art and practice that we could bring back in. This is not wishing death. This is just saying the time has come. It's okay. So let's talk then, you contrast that sort of beautiful imagery with this, well, why don't we just put her down like we put the dog down?

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
And I hear this all the time when I speak on physician assisted suicide in euthanasia. And the truth of the matter is, that if you ask a farmer who cares for animals, why they don't sit vigil with the horse while it's

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
dying, it's because nobody can. We can't possibly give that amount of energy to a farm animal, so we put the animal down.

Amy Julia Becker:
Mm.

Lydia S Dugdale:
Human beings have a different kind of dignity, right? And there is something that is different about the human being that I would argue deserves that care all the way until the end. and that that should not be hastened by inducing death. Now, so here's the distinction, okay? Physician assisted suicide is the old language and that refers to a doctor giving a patient lethal drugs that the patient has to self ingest when he or she is ready. Now, typically going back to when this was first. legalized technically in 94, but really it started in Oregon in 1997. You had to have a prognosis of six months or less to live. You had to live in Oregon. There was a waiting period, a couple of witnesses, two doctors had to sign off, and if they were worried about depression, they would screen you for depression, which almost never happens. And then you would get your bottle of pills and you would have to sort of crush them and put them into an elixir and then take it. Now you have to be able to self-ingest, right? You have to be able to crush them, turn it into an elixir. There's sort of all of these things, but they were all meant to be sort of safeguards so that no one is sort of gonna hasten your own death. We can talk about whether those safeguards are really goalposts that are moving. That's sort of a separate question, but that's what's happened in the United States. So it's physician-assisted suicide, and safeguards aren't necessarily all there anymore, but... It's legal or decriminalized in 10 states plus Washington, DC. And that means that about 20% of the US population has access to physician-assisted suicide.

Amy Julia Becker:
Okay.

Lydia S Dugdale:
It is not legal in New York where I am or Connecticut where you are,

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
but I guess your mother-in-law was in Louisiana, so it would not

Amy Julia Becker:
Yep.

Lydia S Dugdale:
have been legal there.

Amy Julia Becker:
Right.

Lydia S Dugdale:
But... Oregon and Vermont have very recently dispensed with their residency requirements,

Amy Julia Becker:
right.

Lydia S Dugdale:
which means that physician-assisted suicide tourism effectively is a thing. So you don't have to be a resident of the state of Vermont, but you could go there, get a prescription from a doctor, and end your life that way. Now, I contrast that with what's called euthanasia. And euthanasia typically in the modern vernacular refers to direct lethal injection. Euthanasia is what we do to our dogs when they've reached the end of their lives. Euthanasia is what we do to prisoners on death row. Euthanasia is giving someone a poison that kills them pretty quickly. It's actually a cocktail of poisons. In jurisdictions where this is legal, around the world, it's not legal anywhere in the United States, but in jurisdictions where it is legal, people on the whole, if they have the choice between assisted suicide and euthanasia, prefer the direct injection.

Amy Julia Becker:
Mm-hmm.

Lydia S Dugdale:
They prefer to just put it in my arm, put the IV in, I'm going to lie down, and it's much tidier, it's quicker, it's not up to user error. And so it is currently legal, well, increasingly in many places, sort of until the last couple of years, it was primarily legal in the Benelux countries, Belgium, Luxembourg, and the Netherlands, legal in Colombia, in South America, and legalized in Canada in 2015, and they started performing it in 2016. Since in the last few years that many more jurisdictions have legalized it though We don't have quite the same data that we have for example from Belgium the Netherlands and Canada So that's sort of the overview and then yeah, I mean Julie. I don't know if you want to ask specific questions from there

Amy Julia Becker:
Well, could you talk about what's happened in Canada? Because there was a change, if I understand it correctly, in the legislation in the past couple of years that has prompted a lot of concern. At least that's what I've been reading. And this is particularly true in disability circles. So can you speak to that?

Lydia S Dugdale:
Yeah, absolutely. So Canada started performing euthanasia and assisted suicide in 2016. At the time that it was passed in 2015, death had to be reasonably foreseeable. Within a year of passing that, Canadian provinces started overturning that piece of the legislation, meaning that as long as someone had irremediable suffering, even if they weren't dying, even if death wasn't on the horizon at all, they could be euthanized or they could end their lives by assisted suicide without having to have a terminal diagnosis. So by 2021, that was true for all of Canada. And then Canada legalized what Canada calls this combination of euthanasia and assisted suicide, it calls it MADE, which stands for medical assistance in dying. So

Amy Julia Becker:
Mm-hmm.

Lydia S Dugdale:
in Canada, both are options. The vast majority elect euthanasia. They elect direct injection. So then Canada legalized MADE for those suffering from mental illness. Now, psychiatrists have long taken a stand as a profession. Psychiatric societies, psychiatric associations have long taken a stand euthanasia for mental illness. In part because of the question of where that line is between

Amy Julia Becker:
and

Lydia S Dugdale:
conventional suicide and assisted suicide or euthanasia hastening death. Is a patient truly of sound mind? Is a patient not of sound mind? Is this an autonomous decision?

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
Does the patient know what he or she is getting into? So for all of those sorts of reasons, psychiatrists have taken a strong stand against. Plus, most mental illness can be mitigated in some fashion now. We have incredible medications. And so Canada was supposed to roll out, made for those suffering from mental illness and psychiatric diagnosis effective in March of this year, 2023, but they've actually, because of public outcry and concerns about... adjudicating this, they've put it off until March of 2024. But what we've seen since 2016 through to 2021 in Canada, the year for which we have the most recent data, comprehensive data, is that it went from essentially zero to more than 10,000 deaths a year. The majority by euthanasia, fewer than seven people a year actually will crush their own pills and make

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
the elixir. And people are being euthanized for all kinds of reasons. They can't afford to pay their rent. They can't get access to disability services. They can't afford their medical treatments or the treatments for their chronic illness. There is a para-Olympian wheelchair bound who called the Veterans Affairs Bureau and requested a wheelchair lift for her apartment. And she was told. that they couldn't give her that, but instead they could give her maid. And then this

Amy Julia Becker:
Ugh.

Lydia S Dugdale:
prompted such an outcry, right, she is a she is a, she is, I mean, she's an incredible athlete.

Amy Julia Becker:
Mmm.

Lydia S Dugdale:
This prompted such an outcry. The Veterans Affairs Bureau did its own internal review and they found that there were four cases of veterans being offered maid instead of, you know, the treatments that they needed or the interventions that they needed for their service-related disabilities. So it's concerning that, you know, it's kind of brave new world-ish, you know,

Amy Julia Becker:
now.

Lydia S Dugdale:
is this the way we want to take care of people? Because as a society, we don't have a great healthcare system, we don't have great social services, et cetera, et cetera. We don't have great community, we don't have great social cohesion, all of these things that help, you know, prevent folks who are dependent, right, from spiraling into despair. We don't have those things. Canada is suffering from a lack. The US is suffering from a lack. And so I think were euthanasia to be legalized in the United States, we would probably see numbers fairly quickly that look like Canada's numbers, especially in states where people are really in favor of autonomy and of my sort of. living my life. I mean, what does that state is it live free or die? New Hampshire,

Amy Julia Becker:
Yes,

Lydia S Dugdale:
is that New Hampshire live

Amy Julia Becker:
that's the

Lydia S Dugdale:
free

Amy Julia Becker:
answer.

Lydia S Dugdale:
or die? That sort of live free libertarian kind of mindset people in areas where that is very much the ethos, we'll see large numbers of euthanasia, I'm sure, were it to be legalized in the United States. So Canada is, Canada is definitely a country to watch right now, for sure.

Amy Julia Becker:
Yeah, thank you so much for just giving us not only that big picture, but also some of those really personal examples, because I do think it puts flesh on the problem in the sense of, wait a second, that woman was not in any way asking for maid. And to be offered it without asking does bring up for me a lot of the questions I often get asked when it comes to disability matters, whether that is someone who has a prenatal diagnosis of Down syndrome. and is not considering abortion and is pressured in that direction from a physician where it's like I'm not interested, this is not what I want, and yet I've got an authority figure who is telling me that maybe this is what I ought to be doing. And in other situations when I hear about just even, it's interesting because I agree with you that the libertarian response to euthanasia could very well be like I get to take control over this for myself. I also, however, I get so many questions when I meet with a bioethics class of high school students once a semester to talk about when they're doing their abortion unit, but they're really asking me about disability. And I get a lot of questions about the economics, which is to say, in my case, like, does your child cost us all more than a typical kid? And how should that be factored into the value of their lives? And so I do think that especially in states where there's actually more social services and more provision of care, there's also an awareness that that's costing taxpayers dollars. And we've seen, I remember a situation, I think it was a physician in Australia who was not a citizen, who was applying for citizenship and had a child with Down syndrome. And they were in Australia in order to care for people who were in impoverished situations doing a lot of good within the society and it may or may not have been Australia, I don't know, but regardless, they had a healthcare system where they said, no, we're not taking you because we'd have to pay for your child and their care. So I wonder, how do you see the valuing of human life coming into this conversation? Like how does the way we... put even like some measure of like economic price tag on human life, how does that affect this conversation? How does it affect the way we think about living and dying? What are your thoughts on that?

Lydia S Dugdale:
Yeah, no, that's such a good question. Canada is publishing a report projecting how much money it is saving from

Amy Julia Becker:
There you go.

Lydia S Dugdale:
rolling out made.

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
And there was a report, there was a paper actually in the medical literature published right after it was legalized with a projection of how much they would save. And now they are sort of updating internally, so not in the medical ethics literature, but just the Canadian government. is publishing these numbers. You know, when you are saving hundreds of millions of dollars a year by essentially hastening death and people can forego medical treatments that they otherwise would have, and you're in a closed system with a fixed pot of cash, that's very dangerous, right? That's very dangerous. I mean, for the examples you just gave. Oh goodness, I have had patients who have wanted to stop their treatments because they knew for example that their life insurance policies would lapse if they weren't dead and that the only thing they had to leave their kids was their

Amy Julia Becker:
the

Lydia S Dugdale:
life

Amy Julia Becker:
world.

Lydia S Dugdale:
insurance. And I like pleading with my patients to continue their treatment or

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
I'm watching adult children know that they have a stake in inheritance once mom goes pleading with me to stop mom's basically let mom die and cash in on their inheritance. I mean, as a primary care doctor, I've gotten stuck in these things.

Amy Julia Becker:
Mmm.

Lydia S Dugdale:
People are driven by all kinds of things. And once we make it legal and easily acceptable for people to be dead, we're just going to see it climb out of control. And I actually just found a study from the Netherlands where they compared different regions of the Netherlands and their euthanasia rates. And there are three provinces, I don't know if that's the right word, three jurisdictions around

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
Amsterdam where the euthanasia rate is as high as one in seven. I mean, one in seven people just being put down is

Amy Julia Becker:
Mmm.

Lydia S Dugdale:
incredible, right?

Amy Julia Becker:
Yeah,

Lydia S Dugdale:
And at what

Amy Julia Becker:
yeah.

Lydia S Dugdale:
point do we say this is just too much? Is it when we're euthanizing everybody? Is it when we're euthanizing half of the people? There were data coming out of Belgium. that was published in 2015. So it's old data now, but it was really interesting to me because it compared euthanasia requests granted in Belgium comparing 2007 with 2013. And the number of euthanasias for women who were over the age of 80 living in nursing homes with primary school or less education. Those were all stratified separately, but those four classifications, they all either doubled or tripled in six years. And then you have to think, well, right, if it's just easy to put someone down, why wouldn't you get rid of the little old ladies who are uneducated living in nursing homes? And like, look, I'm being a little bit, you know, kind of sensational right now with my choice

Amy Julia Becker:
Right.

Lydia S Dugdale:
of language, but I think that we have to sort of name the spirit that... can lie behind this. I recognize people don't want to die. Your story of your mother-in-law was beautiful to that point, right? People don't want to have to face these sort of terrible dying processes. At the same time, can we reimagine care of the dying in all of its messiness as a gift, right? Can we come to see a different sort of beauty in that? I have another friend who read my book as his father was dying or before or after. and he said the same thing. It was terrible. It was terrible. And I thought we need to, we need to change the conversation on that because, yes, it's hard. It may be the hardest thing you ever do. It may look ugly, but there's something so human and good for community and good for relationship that comes out of it. And I think that that's

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
where the gift is, right?

Amy Julia Becker:
Well, and I'm thinking back to, you have some pictures in your book from those hours, Moriendi. Like there's a picture of a bedside, it's talking about the virtue of patience, and there's like a dying person in a bed, and there's this sense of, it's gonna take a long time to die. And patience is one of the things that is coming out of that. Like a sense of what it means to be faithful in love. to each other over time is embodied, I think, in that picture and it's not embodied in our lives together. And yet that was one of the things, I mean, we came away from that day with my mother-in-law saying we were wrong to talk about ending her life prematurely, we were wrong. And it really actually, that was one of the things that set us up in receiving our daughter who has Down syndrome to understand life as a gift in a different way and to stop seeing it in these kind of utilitarian, economic, terms. But I do remember, and this has happened a couple of times, writing about the decision to go on and have more children and do actually less prenatal testing with each child, even though I had a higher chance of having another child with Down syndrome, because I had started to understand the gift of life in a different way. But some of the readers who read that saw that as highly irresponsible because of the economic implications of bringing more people with disabilities into our society, rather than seeing the gift that each human can be. And certainly we could have another conversation at another time about healthcare costs, right? And it's not as though they're irrelevant to this conversation. And yet one of the things I found so fascinating, I've read this before, but you reminded me of it in your book, that patients who decided to stop kind of, I don't know, over the top, I'm not using the right word, interventions, and get hospice care earlier lived longer. because

Lydia S Dugdale:
Yes.

Amy Julia Becker:
there's

Lydia S Dugdale:
Yeah.

Amy Julia Becker:
so much more to living than the medicines that we put into our body. And so much of it has to do with deciding to live well until the end within community and getting the types of care and support that we need. So there's just a different kind of, I think Charles Taylor calls it a social imaginary, right? Like there's a different way of imagining how we are and ought to be as a society if we are to approach and perhaps undo some of where we are headed right now when it comes to seeing human lives in terms of economic value, economic potential, the efficient ways to die, all of these things we've been talking about. And maybe that's where I'd love to kind of land this conversation, even though I could talk to you for hours. I want to honor your time and end with, okay, so what do we do? I mean, in the face of all the things we've just... kind of spewed out that are problematic and continuing to head in that direction, how do we respond in a way that might actually be on the side of hope and healing without being Pollyanna, you know, about it all?

Lydia S Dugdale:
Yeah, no, that's a great question. I think that's sort of what I was trying to do with the book, which is to say, look, there are lots of ways that we can die poorly, but with a little bit of imagination and conversation with those we love, we can think about doing this better.

Amy Julia Becker:
Hmm.

Lydia S Dugdale:
And that does include nurturing relationships. That does include seeking reconciliation. That does include hard conversations with the doctor and the medical team and family about what is prudent, what is not prudent. That does include examining one's metaphysical commitments, one's existential questions, right? What is life for? What happens when I die? As a doc, I have been asked these questions as patients are dying and they're suddenly realizing that they have never really solved the God question for themselves. Let me tell you,

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
that's something that's really too late to do when someone is actively dying.

Amy Julia Becker:
Yeah.

Lydia S Dugdale:
But these are questions of living well and dying well, right? And so to work through those now, while anyone listening can, I think is part of enriching our lives and our communities, as well as working toward a better death.

Amy Julia Becker:
Thank you for that. I know we, again, I haven't talked about this, but we emailed about it a little bit. One of the things I've been really struck by over these past really 25 years of thinking about these things between my mother-in-law's death and then our daughter Penny's life has been the distinction between idolizing life, that sense of

Lydia S Dugdale:
Thank

Amy Julia Becker:
we're gonna

Lydia S Dugdale:
you.

Amy Julia Becker:
keep you alive at all costs. and honoring life and saying your life is valuable and it's a gift. All life is valuable. All life is a gift. And how can we receive that well and yet also I guess relinquish it well to kind of know those human limits that are very real and bodily and come to us all. And I'm just grateful for your work because I think it is helping us address some of the distinctions between turning life into something that we idolize and say... kind of no matter the cost, we have to keep this going, or as soon as it seems to involve suffering, we've got to be done with it. But instead saying, how can we honor the lives we've been given, not only our own, but actually in one another as well? How can we honor that in a way that allows us to, yeah, receive and relinquish the gifts that we've been given?

Lydia S Dugdale:
Yeah, yeah, that's good.

Amy Julia Becker:
Well,

Lydia S Dugdale:
I'm with

Amy Julia Becker:
Dr.

Lydia S Dugdale:
you.

Amy Julia Becker:
Dugdale,

Lydia S Dugdale:
You said

Amy Julia Becker:
thank

Lydia S Dugdale:
it well.

Amy Julia Becker:
you. Thank

Lydia S Dugdale:
Ha ha ha.

Amy Julia Becker:
you very much. Thank you. No, thank you so much just for giving us your time today and your book. Again, I'm going to say the name of your book again because I think it's something that pretty much every American should just have to read, but also have as a resource and a reference because we all are going to be facing these questions, whether for ourselves or for people in our lives who we love. So The Lost Art of Dying, Reviving Forgotten Wisdom. Thank you for bringing us your book. sharing with us your time today.

Lydia S Dugdale:
Pleasure, thanks so much.

Amy Julia Becker: