Conversations: Katie Engelhart
SYNOPSIS
Do no harm. Thou shalt not kill. Life is sacred and should be protected at all costs, right? But when is life no longer worth living? Who decides? And what do we do about it?
In this episode, Emily discusses the murky ethical dilemmas of medical aid in dying with award-winning journalist Katie Engelhart, the author of The Inevitable: Dispatches On The Right to Die.
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GUEST
Katie Engelhart is a journalist and documentary filmmaker, based in Toronto and New York City. She is also a National Fellow at New America. She was the recipient of the 2021 George Polk Award for Magazine Reporting and the John Bartlow Martin Award for Public Interest Journalism. Her writing has appeared in The New Yorker, The New York Times, The Atlantic and many other publications. Engelhart has worked as a correspondent for NBC News and VICE News. Previously, she was a graduate student of History and Philosophy at Oxford University.
CREDITS
Hosted by Emily Silverman.
Produced by Emily Silverman and Jon Oliver.
Edited and mixed by Jon Oliver.
Original theme music by Yosef Munro. Additional music by Blue Dot Sessions.
The Nocturnists is made possible by the California Medical Association, the Patrick J. McGovern Foundation, and people like you who have donated through our website and Patreon page.
TRANSCRIPT
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Emily in Conversation with Katie Engelhart
Episode Transcript
Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. We encourage you to listen to the episode if at all possible. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.
Emily Silverman
Do no harm. Thou shalt not kill. Life is sacred and should be protected at all costs, right? You're listening to The Nocturnists: Conversations. I'm Emily Silverman. In this episode, I speak to journalist Katie Engelhart about her new book, The Inevitable: Dispatches on the Right to Die. In it, she speaks to patients, doctors, ethicists, and others about the murky ethical practice of medical aid in dying. When is life no longer worth living? Who decides and what do we do about it? This is one of the most provocative pieces of journalism I've read in recent memory. And I'm so excited to talk to Katie about it. Katie is a reporter and documentary film producer from Toronto who's based in New York City. She's also a National Fellow at New America. Engelheart has worked as a correspondent for VICE News based in London, and NBC News in New York. Her writing has appeared far and wide. Formerly, she was a graduate student of history and philosophy at Oxford University. Before we spoke, I asked Katie to read an excerpt from her new book, The Inevitable: Dispatches on the Right to Die. Here's Katie.
Katie Engelhart
Betty said that she would go to Mexico herself. "I'm going to do it." She told the others. Lots of people went to Tijuana. But Betty chose Tecate, a small city off Federal Highway 2, surrounded by mountains. She had read in her online suicide manual about Mexican pet stores were in the know foreigners could buy lethal poison. All you had to do was tell the employee at the register that your dog was very sick and needed to be put to sleep, and that you were there to buy the sleeping agent. I'm on the case, Betty texted her friends from outside a local shop. She was a little bit scared, but not too scared. She didn't think the police would seriously target a woman in her 70s. "They're not going to go after a little old lady," she said, "and I could pull the little old lady cover if I had to. I could sit and cry if I had to, no problem." Back in Manhattan before she left for Mexico, Betty had bought a handful of expensive looking cosmetics bottles and printed labels to stick on the front of them, "for sensitive skin only". The idea was that she would transfer the pet store poison into the decoy containers before driving back over the border into California and flying home. The drugs would belong jointly to her and her two best friends. They would hold on to them quietly in their respective Upper West Side apartments until someone got sick. "We have a pact," Betty said, "the first one who gets Alzheimer's gets the Nembutal." The fast acting barbiturate would put the drinker to sleep quickly. But not suddenly. Once she was asleep, her breathing would likely slow over the course of 15 or 20 minutes before it stopped.
Emily Silverman
Thank you for that reading. I just wanted to open by telling you how much I loved this book. I can't stop thinking about it. How did you get interested in this topic?
Katie Engelhart
This book started out with an assignment. I was living in London, it was 2015. I was asked to cover a debate going on in the British government about whether to pass right to die legislation. So, legislation that would legalize physician-assisted death. And I found the debate to be interesting, but also very predictable. And it was in the course of that reporting, that I learned about this whole sort of universe of people who were not waiting for laws to pass. People who were making their own arrangements to end their lives. And in some situations. These were intimate arrangements--within families, for instance. In other cases, I found quite organized networks of volunteers operating to help strangers and their lives when they wanted to. So there was this whole world that I just never expected to find. I spoke to hundreds over the course of really five years of work. In a way, it's some of it still feels stranger than fiction, and I really had to cast a broad net and just follow conversations from one to the next. So, to give an example, really early on in my reporting, I met a woman in Britain. She was living outside of London. Very interesting woman. Her name was Avril Henry--retired professor, she taught at Oxford and Cambridge. She was an expert in medieval literature and iconography. She wrote academic articles about Chaucer, and rhymes and poetry and... And she was in her 80s. And she wasn't suffering from anything in particular. You know, she was slowly dying of what we would euphemistically call old age, but which felt to her like this collection of unbearable symptoms, everything from hearing loss to some neuropathy, which made it hard for her to walk, to some incontinence. And this woman decided that she wanted to end her life before she grew any older. She didn't feel that she was depressed. She had loved life. And she simply felt like, I mean, it was almost like a crude, mathematical calculation. She felt like the bad was worse than the good was good at some point. And this little old lady had taught herself how to create an encrypted email address, and eventually was able to procure drugs from dealers in Mexico--barbiturate drugs, which she used to end her life. And that was sort of the first story that I ended up following over the course of several months.
Emily Silverman
At least in the United States, a lot of people who choose dying, have a terminal illness, and they're going to die anyway, in days or weeks or months. But you very deliberately, in selecting which characters to feature in this work, chose to focus on people whose deaths weren't imminent, like the example that you just gave. So, tell me more about your decision to do that.
Katie Engelhart
Yeah, so the United States, the state of Oregon, was the first place in the world to pass aid and dying legislation. That's been legal in Oregon for over a quarter of a century and it's passed in a number of other states. 20% of Americans now live in a state where physician-assisted death is legal. The strange thing, from my perspective, is that I think these laws are often described as pieces of radical legislation. And yet, in the end, the people who choose physician-assisted death are almost dead anyway. There are days or weeks from a death that they would otherwise have. And so these laws help people to die with a little bit more lucidity and sense of control, but they actually aren't radical at all. So, I was interested in in cases where it was less clear-cut, where someone potentially had years or decades left to live, but still wanted to die for their own reasons. So, I started the book, actually, with the case of an older man in his late 80s, who had prostate cancer. He did have a legal physician-assisted death in California. It was sort of a lovely death. I felt like a lot of readers would not along with it. And then my hope was that as we went further along into this book, those stories would become a lot less clear-cut.
Emily Silverman
So, the image I have, in my mind of physician-assisted death, at least in the United States, is the patient, they have to self-administer. So usually, they're stirring something into a beverage and drinking it. Is that correct?
Katie Engelhart
You're right, the patient has to administer the medication himself. The doctor prescribes them, a compound pharmacist makes them, and the patient stirs them and drinks them. This is not how it's done. In almost every other place where physician-assisted death is legal. In other countries, patients have the option of drinking this cocktail. But they also have the option of receiving an injection from a physician. So, what we would call euthanasia. And in most countries, places like Canada or Belgium, the patient almost always--like 99% of the time--chooses the injection. The reason for that is, it's quick, you know, it works in something like 20 minutes. It doesn't fail. So, the United States is quite an anomaly in requiring self-administration. The idea, when the Oregon law was first developed, was that, you know, this would be a way to prevent abuse. Surely, if the patient drinks the medication, this is proof of consent. But, it does come with a lot of downsides.
Emily Silverman
Like the woman with ALS who had to, I believe, like, run her wheelchair into a wall so that she could like self-administer something.
Katie Engelhart
Yeah.
Emily Silverman
So, these doctors in Europe, they're just like, "We don't get it. Why do you... Why do you all do it that way?"
Katie Engelhart
Absolutely. For patients who can't, say, lift a hand, some doctors find a way around it. So, if the patient has a feeding tube, for instance, he might be able to put medication into his feeding tube. Sometimes, rectal catheters are used. But that's not how people really want to die.
Emily Silverman
Can you just roughly sketch out the landscape? So, we have the U.S. and then there's Belgium, the Netherlands, Switzerland. And then there's even this international organization called Exit International. Like, can you kind of break that down and tell us like, who's the most flexible? Who's the least flexible? And where are we at with these different countries?
Katie Engelhart
Yeah, so the Benelux countries--Belgium, Netherlands, Luxembourg--they sort of had the most liberal right to die laws. Although now Canada's... You know, as of next year, Canada's law will be pretty close to what exists in Belgium. So, these laws are much more expansive. The death doesn't even need to be imminent. The important measure is sort of the patient needs to be suffering, unbearably and irremediably. And of course, only the patient can know whether her suffering qualifies. So, the emphasis is on suffering and also different kinds of ailments are considered. So, in Belgium, for instance, a patient who is suffering from mental illness, but is physically fine, could qualify. In Belgium also, minors are eligible. So, children who show sufficient judgment. And in a couple of countries, aid in dying is actually allowed by advanced request. So, in the Netherlands, for instance, a patient with dementia could sign paperwork early on saying when I get to this stage in dementia, even if I no longer have capacity, I would like to receive euthanasia, an injection from a physician. And then, apart from the law, there are organizations that exist in different places that kind of work in this space. One group I followed is based in the United States, the Final Exit Network. And they're this group of volunteers, and quite a lot of retired physicians, who assess people who reached out to them and in some cases helped them to order equipment that they could use to end their lives. And, in some cases, sit with them at their side while they die. And there's another organization I wrote about, called Exit International, which is really based online. It's run by an Australian doctor named Philip Nitschke. He actually lost his medical license in the course of my reporting, for running what he calls DIY death seminars--where he travels around and teaches, usually audiences full of 70 and 80 year olds, how to end their lives in different ways. And yeah, he runs this online group that offers information and in some cases, quite specific referrals to, for instance, drug dealers or people with access to lethal solutions.
Emily Silverman
One of the guests we had on this podcast several months ago is a physician named Louise Aronson, and she's a geriatrician and she wrote a book called Elderhood. And it's all about the last chapter of life. She talks a lot about how we tend to just lump people into one category--old--even though that category has such diversity, and it has such a spectrum. And, in her book, she cautions us a lot about ageism. And since I've read that book, everywhere I look, I'm just seeing ageism, which is part of why Avril's story was so interesting to me, because it kind of had me looking at things from different perspectives. So, I was wondering, what did Avril--you know, the person, the character, but also, her story--teach you about that tension between right to die and age.
Katie Engelhart
Louise Aronson's book's really wonderful. And I would really recommend it for anyone. Avril is this woman I met in England, who chose to end her life with barbiturates she acquired online from Mexico. There are as many ways to experience older age, I'm sure, as there are older people. For Avril, old age had become unbearable. At a certain point, she felt that she was quickly losing the ability to do things that made life meaningful--enjoy her garden, see friends, visit the local swimming pool every day to swim laps. And she decided that she was going to "take matters into her own hands." Those were her words. One thing that Avril said that really struck me was she said that she longed for cancer. And she was jealous of people who got terminal cancer diagnoses, because they had a projected endpoint, which she didn't have, and which she really craved. She found it very hard to imagine feeling worse and not knowing when it would be over. And Avril was interesting in that she decided to tell everyone in her life what she was doing before she did it. So, she told her doctors, she told her friends, she told acquaintances, she told her gardener, she told the landscaper who helped around her house. I mean, she was, in retrospect, fairly reckless in kind of who she was telling. And this did result in police officers on several occasions visiting her home with social workers and physicians. What was interesting is, at one point, social workers and doctors were called to her house to perform a wellness check, because word had got out that she potentially ordered some substance that could harm her, and that she was planning on ending her life. And I was able to get the doctor's notes written on that night. I mean, they were there from like, midnight to 4AM with her. And what was interesting is they were sort of looking for depression, like they expected to find depression. And they didn't find it. She was acting rationally. And the doctor scribbled something at the end of the report, which is something like, "Very difficult situation. Can't intervene." She wasn't depressed. She couldn't just be taken away and put on some sort of psychiatric hold for 72 hours. And the medical workers who interacted with her really didn't know how to handle what some people call the desire for rational suicide. Now, on the other hand, there's this issue of ageism. And I definitely spoke to geriatricians and, in particular, geriatric psychiatrists who were anxious about the idea of right to die legislation being open to older people. They felt like, already, there is so much discrimination against older patients. They're not always given or presented with access to good palliative care. And so the option of physician-assisted death might kind of exacerbate that problem. One geriatric psychiatrist, Linda Ganzini, she says, you know, a lot of younger psychiatrists, they assume that life must be shitty for older people. And in Dr. Ganzini's mind, this kind of ageist attitude can actually stop physicians from recognizing when an older patient is depressed and could benefit from treatment, like a younger patient would. There are definitely concerns about that, but also a lot of people who wish for an option to end life for patients who are kind of living longer than they would like to.
Emily Silverman
You mentioned palliative care and access to palliative care. And I found the tensions between the right to die movement and the palliative care and hospice community to be really fascinating. It was just very interesting to see, you know, Dr. Ira Byock, Dr. Atul Gawande, this Dr. Quill, they all were really down on modern medicine. And I think in many cases, rightly so. And all of them are kind of saying instead of just giving people the right to die, why don't we focus on making health care better--getting people palliative care, helping doctors communicate with patients about their conditions, listen to their priorities, alleviate physical pain.
Katie Engelhart
Certainly. It was interesting for me to learn that in the history of the right to die movement, palliative care physicians have often emerged as some of the strongest opponents to aid-in-dying legislation. I spoke to doctors who felt like a physician-assisted death would kind of interrupt an important process--the dying process--this kind of moving towards peace that would be interrupted by a hastened death. Others suggest that a certain amount of suffering through at the end of life might be important for a patient and family members. A lot of palliative care doctors, though, say exactly what you just said--you know, pain science has advanced so much, we're good at what we do, we can offer painless deaths. So, patients don't need the option of physician-assisted death. They just need good palliative care. So I think a few things on that. Number one is that what we've learned from states like Oregon, which collect quite a lot of data, is that patients actually aren't usually motivated by pain. People aren't choosing physician-assisted death primarily because they're in excruciating pain and want it to end. They're choosing it for other reasons, more existential reasons. So, they say they want to preserve dignity. You know, they say, autonomy. They say they fear losing the ability to do things that bring them joy and meaning. They fear being dependent on others. And palliative care doctors can't make those fears go away.
Emily Silverman
I think what you're saying about that focus on physical pain, with perhaps less of a focus on existential pain, or psychic pain, is really apt and you write in the book, "many choose to die for more existential reasons, in response to suffering that falls outside the established borders of modern medicine." And it was really funny to me, at times, to hear about some of these characters and their orientation toward the medical establishment. So, you know, here we are a bunch of healthcare workers and we've been kind of inculcated into this "do no harm" culture. But then in the very beginning of the book, we have Betty, sort of derisively talking about doctors and saying their whole education is save a life, save a life, save a life. And then about Deborah, you say, "She believed that most doctors were ‘total arrogant asses,’ pseudogods who thought they knew what was best for everyone else." And, even Lisette imagines a parallel universe where she's the one with the medical degree. And the doctor is the one coming to her begging for relief. So, I was wondering, is that something that you saw across the board, like what was people's perspective toward physicians and kind of the Western medical industrial complex
Katie Engelhart
I think it really varied. A lot of them had just seen people live longer than they wanted to. A lot of people had seen friends or family members, or spouses maybe, drift, sort of from treatment to treatment, without really knowing why and without anyone fully kind of explaining what was happening. And then one treatment leads to another and then all of a sudden, the patient dies while they're still sort of pursuing life-prolonging health care. And they found that to be confusing and unsatisfying. And people felt like they couldn't talk to their doctors, necessarily, about these concerns. In some cases, people really feared that their doctors might interpret their questions as signs of them being suicidal and get them locked up. That was a real fear. But one of the more radical ideas I had to contend with as I was writing the book was kind of what the doctor's role is in all of this. When it comes to physician-assisted death, you know, I started out, as I said, writing about this physician-assisted death in California--the doctor was present the whole time for the whole course of the death. He helped mix up the drugs and handed them to the patient. He had a little cardiac monitor on, he was monitoring the patient's heart rate, he declared a flatline at a specific time. And he was so involved. And he was very, you know, his demeanor was very loving. And he provided this particular family a lot of solace. But I also met people who don't think doctors should be involved in aid and dying at all, in fact, are inappropriate gatekeepers for this. Given that people choose physician-assisted death often for these existential reasons, why, they ask, are doctors the ones deciding who's worthy and who's not? A medical degree doesn't make someone more or less competent to rule on matters like dignity, and autonomy, and meaning in life.
Emily Silverman
And one of the most extreme voices here is Dr. Philip Nitschke of Exit International--the one who lost his medical license in Australia. And he talks about how death isn't really medical--that we've medicalized death--and agrees that we need to take it out of the whole medical context. And then wants to like 3D print these sarcophagus things that people can get into at home. You know, they print it at home with a 3d printer, and then they get in and then it fills with nitrous oxide gas, and there's like a clear roof and they can just look at the stars and sort of fade away. And he argues, you know, buying something like that is no different than buying a rope. That really twisted my mind.
Katie Engelhart
Yeah, Dr. Nitschke is really interesting. One territory in Australia legalized aid in dying in the early 90s. And he was actually the first physician to perform an assisted death in the country, when he performed several until the law was rescinded by the federal government. And his belief at the time was definitely that this is a medical procedure and that doctors needed to be involved. Later, his views changed. And he felt that, ultimately, it was unfair that he had all of this information and knowledge about life-ending that other people didn't have. So, he started traveling around first Australia, but then many countries in the world, offering these DIY death seminars where he taught people how to end their lives in different ways. I sat through a few--these are quite crude seminars, it's sort of like, Chapter One: Cyanide. Pros and cons. Chapter Two: that cardiac medication you've been on for many years, what happens if you save it and take it all? But he does offer the information. And later, he produced an online handbook that various people access. In his mind, he's come to think that he has no right to act as a gatekeeper for this information. On the other hand, I did report on the case of a young man in his 20s, who was severely depressed, who had a lot of mental health issues, who did access Dr. Nitschke's manual, and learn how to end his life. Then who didn't. His life, tragically, very tragically, with the information that Dr. Nitschke provided. So, there are casualties to this model. He would argue that his work is sort of a form of harm reduction, which sounds very cold. But his logic is that some people are going to take their lives anyway. And at least using one of the methods he describes, it would be more likely to be painless and quick. He also said, as you alluded to, that if someone buys a rope and uses it for hanging, you don't blame the owner of the hardware store for selling the rope. He really challenged me to think about how we safeguard these laws, how we determine eligibility criteria, you know, who sets them? Who does the audits? And are the lines in the sand that we always draw when we create any new medical procedure--any law--are they appropriate? Are they... have we drawn them in the right place?
Emily Silverman
I'm glad you brought up the case of the young man with mental illness because you dedicate an entire chapter in your book to mental illness and to a character--another young man who suffers from mental illness, his name is Adam. And he becomes sort of a crusader for the right to die for people with mental illness. And he argues that physical and mental suffering are one in the same--suffering is suffering. So, talk a little bit about that, because that one is a really tough one.
Katie Engelhart
Yeah. This is sort of the impossible chapter to write. I met Adam Meier-Clayton when he was in I think his mid-20s and was living in Canada. Canada had just passed, or was about to pass, sorry, a right-to-day law. And Adam argued that, yes, the law should include people who were suffering from mental illness. He had kind of a host of conditions, including obsessive compulsive disorder. He experienced a lot of psychosomatic pain, his skin, his eyes burned, he found it hard to move, he had very limited energy. And Adam and a lot of advocates in Canada spent years making sure more of us understand that mental illness is real. It's not the fault of the person who is suffering. And it can be just as debilitating if not more debilitating than physical conditions. And so they argue that by excluding mental illness from this law, we're unfairly privileging physical illness. We're unfairly privileging one kind of pain over another kind of pain, when the pain can be just as severe. And it was very hard for me to follow Adam's story. On the other hand, you have a lot of physicians who are very worried about opening up the laws to people who are suffering from mental illness. Some argue that, by definition, a person with really severe mental illness doesn't have the kind of ability to make decisions in his or her best interest. And they also worry that a mental illness could bend back and influence the decision-making. So someone who's depressed, for instance, might be less likely to feel hope or to believe that a treatment would work. And so might be more likely to choose death. But we can keep playing that out, because people with mental illnesses make all sorts of decisions for themselves all the time, and they retain capacity to make a lot of medical decisions. So, why shouldn't they be able to make this one? It's certainly extremely complicated. Adam did end up taking his life with drugs that he acquired from strangers on the internet. And about a year later, I mean, just earlier this year, Canada expanded its aid-in-dying law so that next year, people with mental illnesses will qualify. They already qualify in places like Belgium or the Netherlands.
Emily Silverman
Some people imagine a new compassionate morality, where people with mental illness can be released from their suffering, same as somebody with cancer. And then you write others imagine a dystopia in which time and resources are diverted away from mental health care and toward the less expensive work of helping patients die. So it's like, well, which way would it go? And you mentioned that there are a couple of countries who have already made this option available to people with mental illness. So I'm curious, how has this played out in those countries?
Katie Engelhart
So, in a place like Belgium, people who are suffering from mental illness, but who don't have a primarily physical illness, can qualify. So again, chronic depression's kind of the most common, but in Belgium, the process is usually quite long. So a couple of psychiatrists told me that it usually takes a year, at least, if not longer. It involves more doctors. So, if their doctor agreeing to sign on, and review the patient's records, and agree to the procedure. So it's, it's rare. What's interesting in Belgium is that because it's so complicated, and because so many doctors have misgivings, a few psychiatrists have emerged--a small number--who kind of do assisted death for people with mental illness. And patients end up leaving their doctors and flocking to these other doctors. There's one psychiatrist who even has a house and an organization set up specifically to receive and filter through patients who want to access the law on the grounds of mental illness. And that's very controversial, because they're the parameters of law. But, within that, doctors have their own criteria for interpreting the law. And some doctors will say yes, more than others. And so there's certainly a debate in Belgium about whether people are being granted this right too early. But, you know, I did meet a few women in their 30s, who had been approved for euthanasia. And they felt in some ways, like it was keeping them alive. They had both attempted to end their lives at different points. They both had long histories of institutional care. And they felt like the option of physician-assisted death kind of gave them space to keep trying to live, because they knew that if things got really bad, they would have an out. One of the women I spoke to, she was just very kind of savvy, or I have a bad poker face. And she kind of demanded of me like, do you think I have the capacity to make this choice? Do you think I'm rational enough to make this choice? Knowing what you know about me? And, you know, I really admitted to hesitating, and not knowing how I felt. You know, I certainly believed she was suffering, but I didn't know whether she should be helped. I wasn't sure. So that was very complicated.
Emily Silverman
This word rational, comes up again and again. And I think all of us intuitively feel like the 80 year old academic professor, who is going deaf and blind and is incontinent and tells the gardener and, and the doctors came to her house and could not find signs of depression. I think we intuitively feel like that situation is different than Joshua, for example, the young man in his 20s, who, as you said, tragically took his life with drugs that he took online. So talk a little bit about this rational suicide and how you think about it, or how experts think about it. My understanding is that in the world of psychiatry, it's basically not acknowledged at all.
Katie Engelhart
Yeah, advocates like this term, "rational suicide". I think their idea is to separate it from despair suicide, which should be very clear as most suicides, many suicides are driven by extreme mental illness by impulse. We know for instance, that if we can prevent someone from ending their lives, who's in despair for a period of like 24 hours that can save their lives. And so these advocates are trying to carve out this other kind of life-ending, which they argue is more rational, like based on cost benefit analysis, and it's considered and it's deliberate, and it's not impulsive. And it's sort of enticing to think that there could be these two kinds of deaths. But the reality is often a lot messier. Doctors tend to talk about, "Well, the law is open to people who are physically ill, and there are proposals to have it open to people with mental illness therapies, completely different categories," and these doctors that have their own opinions on whether one or both categories should be included. But the reality is often, there's a mix. Someone who is terminally ill with prostate cancer, could have had a long history of depression. Or suicidal thinking. And so in that case, doctors already have to deal with this blurring of mental and physical pain. And that can be very complicated. And I think doctors are, in some fields, starting to consider it more. So, there was a big conference of geriatric psychiatrists a few years ago, where this subject came up and was debated, and some publications came out of it. And I think doctors were acknowledging, like we have these patients come to us who want to die, and they don't fit the profile of despair suicide, and we can't ignore it. And we're all seeing it. They clearly expressed that they no longer wish to be living, that they have lived longer than they want to, and that they would rather be dead. And some doctors did propose changing the language in the DSM to accommodate something like rational suicide. And a lot of doctors, you know, they had questions about what they should do when these patients present themselves, would it ever be appropriate for them to participate in planning a life-ending? Would it be appropriate for them to not interfere if they know that a patient is planning to take her life to, to kind of go along with it. And I think that would be a big leap for a lot of doctors. But, of course, physicians are already involved in life-ending in different ways. It's standard, say, for an oncologist to have a conversation with a patient who's tried one round of chemotherapy and decides that she doesn't want to try another round. She's had enough, she'd rather go home and spend her last few months with her children. She could have that conversation with her doctor, and it's agreed on and it's done and dusted. And she's in and out of that office in an hour. And no one questions the decision. No one makes her fill out paperwork and get two doctors who agree, and get witnesses, and wait 15 days before she stops her chemotherapy.
Emily Silverman
Yeah, it's interesting to think about the difference between a death that results from action, versus a death that occurs from inaction and how that might feel differently to the doctor, even if it doesn't feel different to the patient.
Katie Engelhart
Yeah, I think that's true. And I think, you know, I meet a lot of patients who don't follow this issue in the news. They're not well versed in like Oregon's Death with Dignity law, but they are surprised and kind of outraged to reach the end of their lives and find that there isn't any thing they can ask for. There is nothing their doctor can do. I think a lot of people just kind of instinctively assume that because they control their lives, they'd have more control over how they died. And they're, in some cases, distraught to find out that they don't have that control.
Emily Silverman
At the end of the book, you reflect on this word that came up again and again in your interviews, which is dignity. And what does that mean? So, tell us where you landed on that.
Katie Engelhart
Oftentimes, it's used as a sort of an imperfect synonym for autonomy, control, respect. What I found more common--people were able to define indignity. They knew what would feel undignified to them. And in a lot of cases that involved dependence. And in a lot of cases that specifically involved sphincter control, people felt like they would live dignified lives until they could not control their sphincters, until they needed help in the bathroom. And that was a really shocking thing. I was trying to unpack this kind of lofty word and really what it came down to for a lot of people was help in the bathroom.
Emily Silverman
You also say people find dignity and authenticity. And that dignity can be a kind of authorial act. I thought that was really interesting. Talk more about that.
Katie Engelhart
It matters to a lot of people how they die, just as it matters to them how they lived. They want to go out as themselves, even if that means forfeiting days or weeks or even months of life. And some people I met felt like a planned death, a physician-assisted death, could be a way of--and really the only way of--writing their life right up to the last minute, of really scripting it. It could be choreographed. There could be specific people present, specific rituals undertaken. Final words spoken. So, yes, I use the word authorial because I think--and this is still a small number of people who choose this--but those people felt like it was this gift that they could write the very final bit of the final chapter of their lives.
Emily Silverman
It was a spiritual question that came up a lot in this book too, which was about suffering. And does suffering have meaning. And you talk about Viktor Frankl's Man's Search for Meaning, where he says, "Man is ready to suffer on the condition that his suffering has a meaning." So, I was thinking about that last night, kind of talking it over with my husband, and I'm pregnant right now. And I had a really rough first trimester with like a lot of nausea and, you know, suffering, but that suffering had a meaning. And for many patients, they feel that they're suffering without meaning. And it seems like that should be pretty clear-cut at a certain point. And yet it's not. And this came up in Maia's story. And also in your interviews with Sally, which is this, this idea that maybe there's some existential negotiation that needs to happen at the end or, you know, Maia and his father, both you say, the two of them were convinced in their own way that Maia had not suffered enough yet, "that she owed something, or someone, or herself, a course of suffering that she hadn't yet completed." And I was wondering if you had thought more about that?
Katie Engelhart
Yeah. One of the chapters of my book is about a woman named Maia, who's now in her early 40s. And she has multiple sclerosis, which she has had for many years, and she is slowly getting worse, or maybe not that slowly. And for years, as I followed her story, I mean, she was agonizing about if and when to end her life. I think now it's, it's more a question of when, and in one case, she got very close to doing it and then backed out. And as you say, she felt she hadn't suffered enough, there was some part of her that felt like she needed to suffer a little bit more in order to deserve a peaceful death. In other situations, I've met palliative care doctors who feel like suffering is spiritually important--that it can facilitate closure, or kind of closeness at the end of life. Ultimately, these are religious justifications, the idea that suffering is redemptive comes from the church. And I think it's been kind of absorbed in different ways by different people. But again, I would ask the question of whether it's fair to ask someone to suffer, because someone else thinks the suffering might be good for them. Perhaps suffering is meaningful if the person who's suffering can bring herself to find meaning in it, but it strikes me that it's not something someone else can impose on them.
Emily Silverman
You mentioned religion, and I'm wondering, what was the spiritual orientation of a lot of the people you talk to? Because I noticed in Oregon, there was a little bit of research about people who chose aid in dying and that generally they scored low on measures of spirituality. You also interview a Belgian psychiatrist named Dr. De Wachter who talks about emptiness and nihilism as a core symptom of Western society. "What is the sense of life when there is no God?... We killed God. And here we are." So, did you get much into spirituality with these folks?
Katie Engelhart
I mean, no one who believes that aid in dying is suicide, and suicide is sinful, is going to pursue this path. And so I think you're right, in kind of the absence of a guiding religious philosophy, maybe some people turn to things like autonomy and dignity and joy to guide their decisions at the end of life. It's not really about redemption or atonement. It's more about closure. And I think that really describes the quest of the people who I interviewed in this book, they saw physician assisted death as a way to obtain kind of a tidy end to their lives.
Emily Silverman
We end the book with Dr. Philip Nitschke, this Australian right to die advocate, who we've mentioned a few times and at the beginning. He has all of these guidelines and restrictions for who is and isn't eligible to get access to his handbook and all of those things. But as the story goes on, he starts to strip away those restrictions and more and more comes to see the right to a peaceful death as a human right. And then at one point, he says, “Eligible to die? Now that is a quaint notion.” So, I guess my last question is, what did you take away from this project? You keep your opinion out of it for much of the book, but I don't know if… Maybe it's a question? I know there are really no answers here. But have you thought about like the crystallizing question, or answer, or message, or thought that you've taken away from this?
Katie Engelhart
Whew, yeah. I mean, I think one of the things that Philip Nitschke and others really forced me to consider was the role that medicine has to play at the end of life. I mean, it was my assumption--and I think it's most people's assumption--that end of life medicine and care, that's the domain of physicians. Hopefully, well-trained physicians who have experience in palliative or hospice care. And what the book really led me to question was whether that is appropriate in all settings--whether doctors are the best people to be safeguarding and setting criteria for these laws. What is right-to-die legislation? It's set by legislators, elected representatives, who draw up a set of criteria, who then drop it on the medical system, which is all of a sudden in charge of enforcing it and deciding who is deserving of death or not according to these legal criteria. That seems a pretty crude way of dealing with these bigger questions of meaning and dignity and choice. I don't know that there's a clear alternative. But I think, right now, there's a problem. And the problem is people feeling isolated from the medical system or unguided by the medical system at the end and not really knowing where to turn.
Emily Silverman
All the more reason for our audience--healthcare workers--to pick up this book, I highly, highly recommend this book. You will not stop thinking about it. It's called The Inevitable: Dispatches on the Right to Die. Thank you so much for this tremendous work of journalism and for your time today, Katie.
Katie Engelhart
Thank you so much for having me. I'm on social media--I'm available if your listeners do buy the book and have questions or comments. I'd love to hear them.
Emily Silverman
Thanks for listening. If you're having thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 or go to speakingofsuicide.com/resources for a list of additional resources. This episode of The Nocturnists: Conversations was produced, edited, and mixed by Jon Oliver. Our Executive Producer is Ali Block, our Chief Operating Officer is Rebecca Groves, and our Communications and Social Media Intern is Yuki Schwab. Our original theme music was composed by Yosef Munro. Additional music comes from Blue Dot Sessions. The Nocturnists is made possible by the California Medical Association, a physician-led organization that works tirelessly to make sure that the doctor patient relationship remains at the center of medicine. To learn more about the CMA visit cmadocs.org. The Nocturnists is also supported by the Patrick J. McGovern Foundation, and by donations from listeners like you. Thank you so much for supporting our work in storytelling. If you enjoy the show, please help others find us by giving us a rating and a review on Apple podcasts. To contribute your voice to one of our upcoming projects or to make a donation, visit our website at thenocturnists.com I'm your host, Emily Silverman. See you next week.