Inside The Fight For The Right To Die: Logistical And Ethical Challenges

Mar 9, 2021
Originally published on March 9, 2021 3:46 pm

When you have a dog or a cat that is in pain and near the end of life, you have the option of putting down your beloved pet. Some people who fear loss of function — mental or physical — would like a similar option for ending their own lives in a safe, peaceful and legal manner.

Journalist Katie Engelhart explores the "right to die" movement in her new book, The Inevitable. Engelhart says individuals seeking death on their own terms sometimes resort to ordering lethal veterinary drugs from Mexico or China.

"When I started reporting the book, I heard this phrase over and over ... 'I'd rather die like a dog,' " Engelhart says. "A lot of people spoke to me about euthanizing beloved pets in their past. They talked about [euthanizing their pets] as being acts of mercy and acts of love — and all they wanted was the same option for themselves."

Engelhart's book focuses on six individuals — two doctors and four patients — who represent different aspects of the debate about physician-assisted death. She notes that in the U.S., physician-assisted death or medical aid in dying is legal in only a handful of states and Washington, D.C. — and there are strict measures regulating which patients qualify. Some people assume that patients who choose to end their own lives do so because they are in physical agony, but Engelhart says her research shows that's not necessarily the case.

"Most people who choose to end their lives at a preplanned moment are more concerned with things like dignity ... autonomy," she says. "They're worried less about the physical pain than the loss of themselves, though that's not to say that pain doesn't enter the equation."


Interview Highlights

On who qualifies for physician-assisted death

The law [on who qualifies] is very strict in the United States. ... A person must be terminally ill, within six months of a natural death according to two doctors. Prognostication is a kind of fuzzy science, but two doctors need to agree that six months or less is a reasonable time frame. And the person needs to have the mental capacity to be making the decision. If that's in doubt, the patient's usually referred for a psychiatric assessment.


Macmillan

That's very different from what the laws look like in other places. ...

Physician-assisted death is legal across [Canada] and the criteria are looser. So instead of having this hard six-months-or-less time frame, patients are required to be suffering "unbearably and irremediably," and their death is required to be reasonably foreseeable, which some doctors interpret as being 10 or even 20 years away. ... So it opens up the law to patients who, say, have multiple sclerosis, who were on a predictable physical downhill slope but who are unlikely to die in the immediate short term. And, in fact, the Canadian government now is considering several amendments to the law, which would open it up to people who are mentally ill but not suffering physically and to people who have dementia. And there are several countries in Europe that already allow euthanasia for both of those conditions.

On how the states that do permit medically assisted death don't give specific guidance on what drugs to use

In most countries where aid in dying is legal, people choose to die by an injection given by a physician. And that's swift and quite straightforward. - Katie Engelhart

We invent veterinary drugs specifically to kill pets, in some instances, [but] we don't design drugs to kill people. We design drugs to alleviate pain or to sedate. And, in fact, though physician-assisted death is legal in a number of states, the laws don't specifically outline what drugs should be used and what combination and what timing — that's been left up to doctors to decide and sort out.

So doctors have, in fact, come up with a kind of cocktail of respiratory and cardiac drugs that will work to end life. The timing will vary from 20 minutes to a couple of hours, depending on the patient and her condition. But [figuring out the doses and timing in those situations is] actually a much more difficult process than I think a lot of people would have imagined. And again, that's specific to the United States. In most countries where aid in dying is legal, people choose to die by an injection given by a physician. And that's swift and quite straightforward.

On the "euthanasia underground"

The more I researched, the more I realized that people were organizing outside of the law, in some cases within family units and in some cases through quite organized groups committed to guiding people through the dying process. This really surprised me in my reporting, but I don't think it should have. I'm very loathe to make comparisons with the abortion movement, but there is one relevant point of comparison here. We know that groups like the Jane Collective existed before Roe v. Wade — they provided safe abortion access before it was legal. And there are groups big and small that sort of do an equivalent for the end of life. ... I probably should have expected that people find a way when they feel abandoned by the law and by medicine. So I ended up profiling a number of those groups. Some are quite informal — we're talking more about websites that refer people to different means of procuring lethal drugs — and some are very organized.

On the risk of prosecution if a friend or family member helps someone end their own life

I think there is concern that an accomplice or an aide might be somehow pushing a person toward death, that this might veer into some sort of murder, homicide. But certainly it puts people in a difficult situation. I met a lot of men and women who were working very hard to obtain either drugs or materials that would help them end their lives and were being forced to do it alone without their loved ones' knowledge, because they just worried so much about their loved ones being prosecuted after the fact.

And in fact, some of the "euthanasia underground" groups that I profiled in my book offer quite detailed guidance to families who are trying to help their loved ones in a sort of furtive way. So they'll say something like: After your loved one ends her life, make sure you go to a grocery store, go shopping, get a receipt with a time stamp on it, bring it home, have an alibi. I think that can be sad in a lot of situations for a lot of families because people want to be there for their loved ones. The idea that their parents would die alone and in fear because they're worried about future prosecutions is a difficult one.

On the complications patients with dementia face in planning physician-assisted death (which is not allowed for people with dementia in the U.S.)

For anyone who's been close to dementia, it's not like there's an on/off switch that you can see coming. There are good days and bad days and then there are fewer good days and more bad days — and then one day, a bad day stays a bad day forever. In the Netherlands, the law actually goes further. So a person can say when she's diagnosed, "I want to be euthanized when I reach X, Y, Z moment, say, when I don't recognize my husband anymore or when I lose the ability to speak and to eat." But these cases are very difficult too. And doctors are often very reluctant to be part of them, because what those deaths could mean, effectively, is that a patient could be smiling, a patient could seem happy on the day of her death. And the doctor is still required to euthanize her because of what she specified potentially months and years earlier.

On the "suicide tourism" in Switzerland

Switzerland does have quite liberal aid-in-dying laws and, unusually, they're open to nonresidents. So there are a few clinics that have formed that serve visitors from abroad who want to to come and end their lives there. The Swiss even speak of "suicide tourism" to the country. And these clinics require that patients be suffering unbearably, that they are sick with something that will at some point reasonably soon end their lives. So anyone [from any country] can qualify to go. But again, I find that people end up traveling to Switzerland and dying before they really want to, because they have to be healthy enough to get on a plane to travel around Zurich or Bern and to complete the process for getting final approval.

On the ethical issues Engelhart grappled with while researching her book


Katie Engelhart has worked as a correspondent for Vice News and NBC News in New York. She won a George Polk Award for her article about the nursing home in Kirkland, Wash., that became the first COVID-19 hotspot in the U.S.
Owain Rich / Macmillan

I was very careful with who I spoke to, and some of this was just born of a self-preservation instinct. I didn't want to get in trouble. I didn't want to be in a situation where I was speaking to someone who I fundamentally didn't think was stable. So in almost every instance, I would only speak to someone at length if I could also speak to their loved ones, their family, their friends, their colleagues, their clinicians, their therapists — if I could have access to their medical notes. So I really didn't want to feel like I was speaking to someone in, kind of, obscurity. I wanted the people around them to know that I was there. And that, of course, would open the opportunity for someone around the person to say to me, "this is a bad idea" or "I think you're making things worse."

And then I also was just very careful in my interactions with people. So I said at length, probably excessively, something along the lines of, "I appreciate you for talking to me, but just because we're having this conversation doesn't mean we have to have more. You can choose at any moment to stop talking to me and that's OK. You can let me know if you don't want to continue the conversations, or if that's too uncomfortable for you, you can just ignore my calls and emails and I will get the point and I will leave you alone." So I definitely left that option open. And in a couple of instances, people took it. I was very aware I didn't want anyone to die for the sake of a story and certainly not for my story.

Amy Salit and Seth Kelley produced and edited the audio of this interview. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.

Copyright 2021 Fresh Air. To see more, visit Fresh Air.

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. When you have a dog or a cat that is in pain and near the end of life, you have the option of putting down your beloved pet. It's considered a humane thing to do. Many people who are dying and in unbearable mental or physical pain want that option for themselves, a way to swiftly, peacefully and legally end their lives. Physician-assisted death or medical aid in dying is legal in only a few parts of America - Oregon, Montana, Vermont, Colorado, California, Washington, D.C., Hawaii, Maine and New Jersey - but there are strict measures regulating who qualifies.

In the new book, The Inevitable: Dispatches On The Right To Die," my guest Katie Engelhart writes about many of the moral, ethical, religious and family related questions surrounding aid in hastening death. The book is based on hundreds of interviews with doctors, people seeking to end their lives and people in what's become known as the euthanasia underground. The book focuses on six stories - two doctors whose mission is to help people die - one legally, one illegally - and four people who are seeking help in ending their lives.

Engelhart writes that reporting this book was ethically naughty and that she was often unnerved and uncertain, both as a journalist and as a human. Engelhart is a reporter and documentary film producer and a national fellow at New America. She won a George Polk Award for her article about the nursing home in Kirkland, Wash., that became the first COVID hotspot. She's worked as a correspondent for Vice News and NBC News in New York.

Katie Engelhart, welcome to FRESH AIR. Your book starts with a woman who wants the security of knowing she can end her life when it's time. And she goes to a pet store in Mexico where she can say she is looking for a drug to put her dog to sleep with the intention of using that drug for herself when she thinks it's time. Did she get the drug?

KATIE ENGELHART: She had some difficulty but has been able to obtain the drug. And she described to me a suicide pact that she's formed with her friends. This is a woman named Betty. She's nearly 80. And she lives in the Upper West Side of Manhattan. And she's formed this suicide pact with her friends. They've agreed that they will share a supply of lethal veterinary drugs between them. And as Betty puts it, the first one who gets Alzheimer's gets the Nembutal. That's the name of the barbiturate.

GROSS: You know, I started the interview with this because you write that so many people told you that it troubled them that they could legally put down their pet, but they didn't have that option for themselves. It seems like a recurring theme in the book. And I'm wondering what that made you think about. And then you found somebody who was actually going to Mexico to get a drug used to put down pets.

ENGELHART: When I started reporting the book, I heard this phrase over and over. And in fact, there are advocacy groups that print this out on kind of laptop stickers. The phrase is I'd rather die like a dog. And a lot of people spoke to me about euthanizing beloved pets in their past. They talked about those euthanasias as being acts of mercy and acts of love. And all they wanted was the same option for themselves, to know that if and when they became sick and frail, if and when they were in unbearable pain, they could have an easy out. And yes, this translates quite literally into men and women in the United States and abroad finding ways to procure lethal veterinary drugs, whether that be from pet stores in Mexico or from dealers in places like China. So I think that doctors are often blind to this, but their patients are finding ways when the medical system leaves them alone.

GROSS: So the woman who you mentioned, she wanted the security of knowing when the time comes, she could take her life. And so it was a projection. She wasn't sick. She didn't have a terminal disease. She wasn't suffering. But she knew that she was old enough that the time wasn't far away, and it was going to give her security knowing that she had some control. Did you find that often that what people wanted was the security of knowing that they had the option of not suffering when the time came?

ENGELHART: Absolutely. I think Betty was particularly concerned about cognitive impairment. You know, when people approach the end of their lives, they often have some degree of cognitive impairment. If they're older, they have some degree of dementia. And this really scared, Betty, who's a woman of her mind, you know, a retired professional, someone who reads The New Yorker front to back every week. The idea of losing herself was more terrifying to her than death. But I think, you know, this is also reflected in several decades of data we have from Oregon, the first state in the United States to pass a medical aid in dying bill.

What we see from Oregon data is that the vast majority of people who choose a physician-assisted death are not in pain. Where pain enters the equation, I think, it's the fear of future pain, the fear of pain to come. Most people who choose to end their lives at a preplanned moment are more concerned with things like dignity. And we could talk about that. I think that's sort of a fuzzy concept. But dignity, autonomy, they worry about losing their mental capacities. They worry about being a burden on loved ones. Sometimes they worry about money. But it's not the case, as critics worried back in the '90s, that people are being driven to physician-assisted death because they're in writhing agony.

GROSS: One of the most common reasons you found for people choosing assisted death is losing control of bodily functions, losing control of their sphincter. Why is that the line for so many people that they don't want to cross?

ENGELHART: The line people use is dignity, so people fear losing dignity. And this is a word I heard a lot when I started having conversations with patients. It's a word that all sides of the right-to-die debate kind of try to seize as their own, critics and proponents of aid in dying. When I ask people what dignity meant, I found they were often fuzzy on it. And, you know, philosophers are fuzzy on the idea of dignity. Many see it as a concept that's sort of redundant. It means the same thing as autonomy or respect for choice. When I talked to people, I found that it was often easier for them to identify indignity, something they thought would be undignified. I had my own sort of poetic concepts of what they might mean.

And in fact, as you say, many people equated dignity precisely with sphincter control. It was really that straightforward. You know, they felt their lives would be dignified until they needed a child to help them wipe themselves in the bathroom. And, you know, I found this very depressing in a lot of ways that people fear the loss of bodily control more than they do nonexistence. But, you know, people at the end of their lives often feel reduced by their bowels, betrayed by them. And so, yeah, it's something that's incredibly common.

I spoke with one nurse who does aid in dying in California, and she was saying that people ask about poo and pee more than anything else. She's always expecting these sort of profound philosophical questions about crossing over to the next place. And in fact, what people want to know more than anything else is, are they likely to poo while they die? And she reassures them that it's unlikely.

GROSS: Did you find that people fear things before they're at their end of their lives, that they're more accepting of when they actually get there? Because you can predict how you're going to feel, but you never really know. And something that might seem totally undignified before you're facing it might be just something you come to accept as the price that you pay for living longer.

ENGELHART: You know, I think that does happen sometimes with physical pain. So I met with one hospice doctor in California, and he told me about a patient he just had who was qualified for physician-assisted death, who had been approved for it and said she wanted it. But she kept asking her doctor, you know, is today the day I should do it? And this doctor's philosophy is that while he will perform assisted deaths, he thinks it's part of his job to push back a little bit. He thinks people are often more uncertain than they understand themselves to be. And so he'd ask her, is today a good enough day? And she would say, yes, it is. And every day, is today a good enough day and it was, and every day was. And then she died a natural death. He told me it was a good death, apart from some mild delirium, which is typical.

GROSS: My guest is Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die." The subject we're discussing is about medical help to hasten death, to end suffering in the final days or months of life. But if this discussion has been upsetting to anyone who has coped with thoughts of suicide in situations different from what we've been discussing, help is available at the National Suicide Prevention Lifeline at 800-273-8255. I'll be back with Katie Engelhart after a break. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. Let's get back to my interview with Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die." She recently won a George Polk Award for her reporting on the first nursing home in the U.S. to become a COVID hotspot.

You know, people end their lives quite frequently without permission from the state or without the help of a doctor, often because of depression or another mood disorder or some kind of mental, emotional or physical suffering. Are there more obstacles when you're older and you're very sick?

ENGELHART: I'm glad you asked that because I think that people often misunderstand the so-called right-to-die debate to be a metaphorical debate. So I'm often asked, you know, people can take their own lives anyway, why do we need a law to pass? And I think that's true and not true. Of course, people take their lives all the time. Of course, suicide happens. But a peaceful death that is painless, a reliable death, you know, a method that will work, that requires some knowledge. That requires access to information, and in some cases, specialized pharmaceutical drugs.

You know, the other point is people don't want to die in a way that feels illegal and strange and kind of secretive. They don't want to do something illegal to obtain drugs and die away from their children for fear that their children will be prosecuted after the fact. They want to die with their loved ones around them in a way that feels sanctioned, in a way that feels respectful.

But certainly to your point, you know, if someone is older and frail, it can be harder to just do the physical acts necessary to end a life. You know, I met an older woman who I write about in my book. She did end up taking her life, but - and she ended up using a liquid barbiturate. And she had just an incredible amount of anxiety for weeks about whether she'd be able to open the bottle with her arthritic hands. So I think certainly age plays into it, weakness, frailty play into it.

GROSS: And even swallowing can be a problem.

ENGELHART: Exactly. So, you know, an interesting thing about the American laws on physician-assisted dying is that they actually require patients to self-administer the drug. And that's very unusual. In every other country where physician-assisted death is legal, places like Canada and Belgium, a patient has the option to just be injected by a physician. And we'd call that euthanasia. In the United States, patients are required to self-administer drugs, and that usually means drinking a lethal solution. But even that can be very difficult. Take a patient with advanced ALS. That patient might not be able to lift a cup of medication to her lips. She might not even be able to suck medication up through a straw. And so in some cases, we find that people are theoretically given access to physician-assisted death but in fact have that right taken away from them for the simple reason that they have difficulty swallowing.

GROSS: You quote Dr. Lonny Shavelson, one of the two doctors who you write about in your book. And he has a practice in which he legally in California helps people who are within six months of death, as predicted by their doctors, and who want to terminate their lives. And he says, you know, it's surprisingly hard to kill people quickly and painlessly. The drugs were not designed for it. And nobody taught you how to do it in med school. Can you elaborate on that, that their drugs weren't designed for it?

ENGELHART: We invent veterinary drugs specifically to kill pets in some instances. We don't design drugs to kill people. We design drugs to alleviate pain or to sedate. And in fact, though, physician-assisted death is legal in a number of states. The laws don't specifically outline what drugs should be used and what combination and in what timing. That's been left up to doctors to decide and sort out. So doctors have, in fact, come up with a kind of cocktail of respiratory and cardiac drugs that will work to end life. It - the timing will vary from 20 minutes to a couple of hours, depending on the patient and her condition. But it was actually a much more difficult process than I think a lot of people would have imagined. And again, that's specific to the United States. In most countries where aid in dying is legal, people choose to die by an injection given by a physician. And that's swift and quite straightforward.

GROSS: It's not illegal in the U.S. to take your life. If you survive and attempt to take your life, you're not going to be prosecuted for it. But it is illegal to help someone else and their life. What is the reasoning behind that?

ENGELHART: Well, I think there is concern that an accomplice or an aide might be somehow pushing a person towards death, you know, that this might veer into some sort of murder homicide. But certainly it puts people in a difficult situation. I met a lot of men and women who were working very hard to obtain either drugs or materials that would help them end their lives and were being forced to do it alone without their loved ones' knowledge because they just worried so much about their loved ones being prosecuted after the fact.

And in fact, some of the, quote, "euthanasia underground groups" that I profiled in my book offer quite detailed guidance to families who are, you know, trying to help their loved ones in a sort of furtive way. So they'll say something like, you know, after your loved one ends her life, make sure you go to a grocery store, go shopping, get a receipt with a time stamp on it, bring it home, have an alibi. And, you know, I think that's - that can be sad in a lot of situations for a lot of families because people want to be there for their loved ones. The idea that their parents would die alone and in fear because they're worried about future prosecutions is a difficult one.

GROSS: So there are several states in the U.S. that have laws that make physician-assisted death legal, but you have to qualify. What are some of the qualifications in different states in the U.S.? Because I know it's hard for a lot of people to meet those.

ENGELHART: The law is very strict in the United States. It's all sort of the same law moved from state to state. So a person must be terminally ill within six months of a natural death according to two doctors. And prognostication is a kind of fuzzy science. But two doctors need to agree that six months or less is a reasonable time frame. And the person needs to have the mental capacity to be making the decision. If that's in doubt, the patient's usually referred for a psychiatric assessment. That's very different from what the laws look like in other places.

So, you know, you're reaching me in my hometown of Toronto, Canada, today. Physician-assisted death is legal across the country and the criteria is looser. So instead of having this hard six months or less time frame, patients are required to be suffering, quote, "unbearably and irremediably." And their death is required to be reasonably foreseeable, which some doctors interpret as being 10 or even 20 years away. So...

GROSS: Years or months?

ENGELHART: Years, years. So it opens up the law to patients who, say, have multiple sclerosis, who were on a predictable physical downhill slope but who are unlikely to die in the immediate short term. And in fact, the Canadian government now is considering several amendments to the law which would open it up to people who are mentally ill but not suffering physically and to people who have dementia. And there are several countries in Europe that already allow euthanasia for both of those conditions.

GROSS: And that's a very interesting 'cause neither dimentia, nor mental illness is included in any of the U.S. states' right-to-die laws.

ENGELHART: That's exactly right. And there are no advocacy groups arguing for it. In fact, you know, I think that the main U.S. advocacy groups really know that they have to stick to the narrow criteria in order for the law to be passed. They're very worried about fueling criticism that once a state passes a physician-assisted dying law, there will be a slippery slope. The law will inexorably expand and expand to include more categories of patients until we are forcibly euthanizing older and sick and vulnerable people. They really don't want to create the impression that the slippery slope is real. But in other countries, yeah, it's very different.

And I think, you know, dementia especially is a really important point with this. In my reporting, I met so many people who fear dementia more than anything else. And they feel very alone. They feel very deprived of options. I even met, you know, in my normal civilian life, I meet a lot of young people who will say to me something like, oh, I've, you know, I've promised my mom or I've promised my granddad that, you know, if they ever get dementia, I'll kind of help them or I'll snuff them out or whatever their wording is. And they say it jokingly and kind of not jokingly. And, you know, I don't know if they're serious. I don't know if they'd be able to act or they'd find a way to act when the time comes. But I know that there's this incredible demand for just some way out of the dementia problem.

GROSS: If you're just joining us, my guest is Katie Engelhart, author of "The Inevitable: Dispatches On The Right To Die." We'll pick up right where we left off after a short break. She recently won a George Polk Award for her reporting on the first nursing home in the U.S. to become a COVID hot spot. I'm Terry Gross. And this is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die." It's about people who are near death and are in or expect soon to be in unbearable mental or physical pain and want the option of ending their lives at the time they choose in a swift, painless and sure-proof (ph) way, a way to peacefully and legally end their lives. Engelhart also writes about doctors who offer that option - one legally, one illegally. She also addresses the larger questions and controversies surrounding physician-assisted death.

When we left off, she was saying she met so many people who fear dementia. But dementia is not included in any of the right-to-die laws in the U.S. It is included in physician-assisted death laws in some other countries.

ENGELHART: Different countries in Europe have different solutions, and they're imperfect. So in a country like Belgium, a patient can decide, when she's diagnosed with dementia, that she wants a physician-assisted death. The hitch is that she has to move forward with the death when she still has full mental capacity, when she's still fully in control of her decision. And this means, practically, that she will, if she wants an assisted death, will die at an early stage of the disease. And those patients, you know, there can be incredible anxiety around those decisions because people want to live. They want to spend as much time as they can with their families. But patients know that if they wait too long, they'll miss their chance. And they don't know when that moment will come, when capacity's gone, so they end up missing out on good time.

GROSS: What a dilemma 'cause - I mean, I see the dilemma here. On the one hand, you want somebody to be in their right mind when they make the decision. On the other hand, it means prematurely making the decision when you don't yet really feel it's necessary to take your life. So that's a really rough ethical and emotional dilemma.

ENGELHART: Yeah. And especially, you know, for anyone who's been close to dementia, it's not like there's an on/off switch that you can see coming. There are good days and bad days. And then there are fewer good days and more bad days. And then one day, a bad day stays a bad day forever.

In the Netherlands, the law actually goes further. So a person can say, when she's diagnosed, I want to be euthanized, when I reach X, Y, Z moment. Say, when I don't recognize my husband anymore or when I lose the ability to speak and to eat. But these cases are very difficult, too. And doctors are often very reluctant to be part of them because what those deaths could mean effectively is that, you know, a patient could be smiling. A patient could seem happy on the day of her death, and the doctor is still required to euthanize her because of what she specified potentially months and years earlier.

GROSS: Yes, it can put a doctor in a very difficult position, ending the life of somebody who requested it earlier, but no longer understands what's happening.

ENGELHART: Mm hmm. And it comes down to this issue of authenticity, right? Doctors want to respect the authentic desires of the patient, but whose desires are authentic in that moment? Is it the potentially happy, kind of forgetful woman as she exists in this deeply demented state, or is it the woman as she existed five years earlier, when she was very clear about what she wanted and what she thought she would find dignified at the end of her life?

GROSS: The men and women who you profile in your book did not qualify for legal physician-assisted death, so they participated in what's being called the euthanasia underground. Can you give us a kind of overview of what that is?

ENGELHART: So when I first started reporting on this subject, I was really looking at legal physician-assisted death. That's a subject I found moderately interesting, also quite predictable. You know, I knew that there would be proponents of aid in dying talking about dignity of the patient and autonomy. I knew there would be opponents worrying about a slippery slope to, you know, forced killing of vulnerable people. But the more I researched, the more I realized that people were organizing outside of the law, in some cases within family units and in some cases through quite organized groups committed to guiding people through the dying process.

This really surprised me in my reporting, but I don't think it should have. And you know, I'm very loathe to make comparisons with the abortion movement, but there is one relevant point of comparison here. You know, we know that groups like the Jane Collective existed before Roe v. Wade. They provided safe abortion access before it was legal. And there are groups big and small that sort of do an equivalent for the end of life. You know - and I probably should have expected that. I probably should have expected that people find a way when they feel abandoned by the law and by medicine.

So I ended up profiling a number of those groups. I mean, some are quite informal. We're talking more about websites that refer people to different means of procuring lethal drugs, and some are very organized.

GROSS: Some people go to Switzerland, where there are more liberal right-to-die laws. What does it take in Switzerland, especially if you're from another country?

ENGELHART: Yeah, Switzerland does have quite liberal aid-in-dying laws. And unusually, they're open to nonresidents. So there are a few clinics that have formed that serve visitors from abroad who want to come and end their lives there. The Swiss even speak of, quote, "suicide tourism" to the country. And these clinics require that patients be suffering unbearably, that they are sick with something that will at some point reasonably soon end their lives. So anyone can qualify to go. But again, I find that people end up traveling to Switzerland and dying before they really want to because they have to be healthy enough to get on a plane to travel around Zurich or Bern and to complete the process for getting final approval.

GROSS: So they're not going to give you the pills to take when you're ready. You have to do it there.

ENGELHART: Exactly. You have to do it there. In fact, it's usually filmed for later possible police investigation, should police get involved. And, you know, there are a lot of documentary films you can find online of older people in, you know, the United States or Australia or wherever traveling to to Switzerland to die. I kind of call them grandpa goes to Dignitas films. They follow this kind of predictable formula of, you know, someone struggling to make a choice and persuading their family and getting on this flight and this strange death in Switzerland. Somehow, I guess, legislators and doctors, policymakers are more comfortable with the idea of people just leaving the country to do this than finding a way closer to home.

GROSS: If you're just joining us, my guest is Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die." We're going to take a short break, then we'll be right back. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. Let's get back to my interview with Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die."

Katie, you profile a couple of doctors in your book. One of them is Dr. Lonny Shavelson, who has a practice in California where physician-assisted death is legal. Would you describe his practice?

ENGELHART: Yeah. So Lonny had a clinic called End of Life Options in the Bay Area, and effectively it was a sort of one-stop shop for assisted death. So patients would find him and start seeing him when they were terminally ill and had decided they wanted an assisted death. And he would, you know, bring them through the last weeks or months or sometimes just days of their lives. The interesting thing about Lonny's practice was it was kind of, you know, a catch-all for the California medical system. Patients who came to him had originally tried, in most cases, to get an assisted death through their own doctors and had been turned away. And so Lonny was sort of there to pick up the pieces and make sure that the rights of California patients were being carried through.

GROSS: You're putting everything in past tense about his practice. Does he no longer have that practice?

ENGELHART: He did stop the practice.

GROSS: Do you know why he stopped?

ENGELHART: He stopped the practice because he felt like doctors in California were using him as a kind of crutch, that it was easier for them to refer patients to Lonny and kind of be done with it than to actually perform assisted dying themselves or to reorganize their health care systems to offer the option. And he felt like California doctors were doing a real disservice to their patients by turning them away at a moment when they were sick and vulnerable. And he felt, as he wrote in a kind of goodbye letter, that by bowing out, he might force their hand.

GROSS: When he was doing that work, what was his process for helping people terminate their lives?

ENGELHART: I mean, you know, there's not a lot of kind of wiggle room in this. There's a lot of paperwork that doctors need to fill, a lot of criteria that patients need to meet. So he would have a kind of introductory meeting with a patient. He would do a kind of capacity assessment to make sure that they were aware of what they were asking for and understood what they were pursuing. He would review their medical records to see if they qualified. He would organize a second opinion to - from a second doctor. That's legally required.

And then he would start the clock on California's mandated 15-day waiting period. California requires that a patient wait 15 days between requesting an assisted death and getting one. And when those 15 days were up, if the patient was still living, which they weren't always, Lonny would travel out. And he would help the patients prepare the drugs. And he would sit beside the patients as they died. And my book actually opens with one death that I witnessed with Lonny. It was of an 89-year-old man named Bradshaw Perkins Jr. who had prostate cancer and who died with his three grown children in his bed with him very peacefully, probably two to four weeks before he otherwise would have died of the cancer.

GROSS: So you mentioned that you witnessed that death. Did you witness any deaths of people who did not have legal-assisted death but used the underground, used pills or other medicines illegally obtained?

ENGELHART: So most of the people I profiled in the book were not obtaining legal physician-assisted death. They were figuring things out on their own. I was not present for any of those deaths for a variety of reasons.

GROSS: Is one of them - I mean, would it have put you in legal jeopardy?

ENGELHART: It could have, sure. Sure, I think it could have. Absolutely. I did follow the patients through the process. I mean, there were a number of instances in the book where I knew that someone had the intention to take his or her life before, you know, before the suicides. And I chose not to intervene. In some cases, I knew very precisely when and how they were going to end their lives. And in some cases, I talked to them, you know, within hours of their deaths. And this was very complicated, obviously.

I mean, I didn't feel that I really had reporting models I could look at. I really felt like I had to define my own limits. So this is kind of, you know, in the years that I reported this book, the process required just constant self-vigilance, constant questioning of whether what I was doing was right and decent. You know, I started by thinking about reporting on suicide. So advocacy groups have put out sort of standards on suicide reporting, I think some more useful than others, but they're generally adhered to.

So, for instance, newspapers typically don't report on suicide. When they do, they are often vague about method and kind of the presentation of the body on discovery. And this is because most suicide are what we call despair suicides. They're born of impulse or mental illness. And there's a feeling that reporting on suicide could trigger the impulse in someone who's vulnerable or lead to some kind of copycat suicides. So, I mean, this all seems sort of fine to me, but it didn't seem to work for the people that I was interviewing in my book. What they were doing seemed very different.

You know, for instance, I profiled a woman in her 80s, a retired professor, you know, brilliant, brilliant scholar of medieval English who very deliberately had planned and did take her life to avoid becoming sicker and more frail. That seemed fundamentally different to me. It wasn't an impulsive act. And so it seemed like those rules didn't apply. But then what rules should apply? And I had to really ask myself, you know, what is the difference between the deaths that I'm looking at and kind of suicide suicide?

GROSS: Let's get a little deeper into that. What kind of ethical rules did you create for yourself?

ENGELHART: So I was very careful with who I spoke to. And some of this was just born of, you know, a self-preservation instinct. I didn't want to get in trouble. I didn't want to be in a situation where I was speaking to someone who I fundamentally didn't think was kind of stable. So in almost every instance, I would only speak to someone at length if I could also speak to their loved ones, their family, their friends, their colleagues, their clinicians, their therapists, if I could have access to their medical notes. So I really didn't want to feel like I was speaking to someone in kind of obscurity. I wanted the people around them to know that I was there. And that, of course, would open the opportunity for someone around the person to say to me, this is a bad idea or I think you're making things worse.

And then I also was just very careful in my interactions with people. So I said at length, probably excessively, you know, something along the lines of I appreciate you for talking to me, but just because we're having this conversation doesn't mean we have to have more. You can choose at any moment to stop talking to me and that's OK. You can let me know if you don't want to continue the conversations or, if that's too uncomfortable for you, you can just ignore my calls and emails. And I will get the point. And I will leave you alone. So I definitely left that option open, and in a couple of instances, people took it. I was very aware. I didn't want anyone to die for the sake of a story and certainly not for my story.

GROSS: If you're just joining us, my guest is Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die." The subject we're discussing is about help, often medical help, to hasten death, to end suffering in the final days or months of life. But if this discussion has been upsetting to anyone who has coped with thoughts of suicide in situations different from what we've been discussing, help is available at the National Suicide Prevention Lifeline at 800-273-8255. I'll be back with Katie Engelhart after a break. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. Let's get back to my interview with Katie Engelhart, author of the new book "The Inevitable: Dispatches On The Right To Die."

There's a debate now over whether palliative sedation, which is often done in hospice care, is in a way a form of euthanasia. Dr. Lonny Shavelson calls it passive euthanasia. What is this debate about?

ENGELHART: Right. So patients in the United States are not, you know, at a federal level, guaranteed the right to die. They are guaranteed the right to as much pain-relieving medication as they need at the ends of their lives. And so doctors right now can offer what's called palliative sedation. This is, you know, sedative drugs that are given to a patient usually over a period of time. A doctor will give a little bit, see how a patient responds. The drugs are increased proportionally. And that's offered to any patient. It's a part of standards of care at the end of life.

The problem is that doctors do palliative sedation in different ways. You know, there's no kind of federal guidelines on how quickly sedative drugs should be offered and how much should be offered. Some doctors give drugs only to manage physical symptoms. Others will use sedation to deal with existential anxiety and distress. And a patient has no real way of knowing what she's going to have access to until she's on her deathbed. There's no consumer guides that tell patients, this doctor offers this at this hospital.

And on the extreme end, some doctors will do what's called palliative sedation to unconsciousness. So if a patient is in an extreme amount of pain, a doctor will quickly administer enough drugs to put that patient to sleep. And some doctors ask before they sedate, and some just sedate because they see it as just a part of the standard practice.

And I think, you know, for some people, the line between palliative sedation to unconsciousness and euthanasia is awfully thin. Often what separates it is a couple of days of deep sleep during which the patient is effectively dead to the world anyway. Also, what separates it is, who's in charge? Is it that the doctor, or is it the patient who's asked for it? And I think many patients ask, you know, why do I have to go through this charade of, you know, getting sicker and requiring the sedation and then this titration of drugs? Why can't I just ask directly for what I want and then get it?

So, again, I think it is important when considering these laws to consider what doctors are already doing every day in hospitals across the country.

GROSS: The National Hospice and Palliative Care Organization had opposed assisted death. But in 2019, they began reexamining it. So where are they now?

ENGELHART: They ultimately maintained their opposition. The head of the organization told me that he is a liberal and he is sympathetic to the assisted dying cause. But he doesn't feel like he has the, I guess, political bandwidth to deal with it. He worries that conservative legislators could strip hospice funding if the organization promotes physician-assisted dying. But even, you know, this organization has no idea how often doctors are administering large amounts of sedative drugs at the end of life. One report from the organization estimated that between one and 52% of deaths involve palliative sedation. And that's just, you know, a comically imprecise figure.

GROSS: Are there doctors that support patients making their own end-of-life decisions but don't think that doctors should be involved in helping with the death?

ENGELHART: There are doctors that feel that way. And some of those doctors are uncomfortable enough that they'll refer patients on and kind of maybe act as a secondary approving doctor, but won't participate in the actual deaths. And I think there are doctors who feel that way but still participate now because right now doctors are the gatekeepers. They're the prescribers. But they certainly imagine a world in which this authority is taken from doctors because, ultimately, physician-assisted death is not rocket science. And people make the case that doctors actually don't need to be involved as they are.

GROSS: So what would the alternative be if doctors weren't involved?

ENGELHART: I think there are different models. If you look at birth, for instance, you know, there's a move to have midwives be more involved in the birth process, and they're not doctors. They're, I guess, medical in some sense, but they're also performing different kinds of services and offering different kinds of emotional or spiritual support sometimes. So there is this kind of talk whether there'll be a death midwife movement. Some people think that doctors might still be involved in a prescribing capacity but that, you know, they don't need to be the ones doing the eligibility requirements, in charge of deciding who deserves a physician-assisted death and who doesn't deserve one.

GROSS: Are there places where that kind of system is in place?

ENGELHART: Right now, it's - tends to be done through the medical system. But I think there's a lot of interesting conversation, again, about why doctors, who go to medical school and learn about the human body and learn how to heal it, should be in control of setting criteria that are fundamentally philosophical criteria that take into account meaning and a person's definition of her own quality of life, a person's own values. I mean, I think there is a real question, again, of why it's doctors who are involved in setting those criteria.

GROSS: Katie Engelhart, thank you for your book, and thank you for speaking with us today.

ENGELHART: Thank you so much for having me, Terry.

GROSS: Katie Engelhart is the author of the new book "The Inevitable: Dispatches On The Right To Die."

Tomorrow on FRESH AIR, our guest will be Sherry Turkle, an MIT professor who spent decades studying the impact of digital technology on our culture. She has a new memoir called "The Empathy Diaries" about growing up in Brooklyn and becoming a leading academic and about family secrets she only understood when she began asking questions in her 20s. I hope you'll join us.

(SOUNDBITE OF BRAD MEHLDAU'S "BLACKBIRD")

GROSS: FRESH AIR's executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham with additional engineering today from Al Banks. Our interviews and reviews are produced and edited by Amy Salit, Phyllis Myers, Sam Briger, Lauren Krenzel, Heidi Saman, Therese Madden, Ann Marie Baldonado, Thea Chaloner, Seth Kelley and Kayla Lattimore. Our associate producer of digital media is Molly Seavy-Nesper. Roberta Shorrock directs the show. I'm Terry Gross.

(SOUNDBITE OF BRAD MEHLDAU'S "BLACKBIRD") Transcript provided by NPR, Copyright NPR.