Brooke Gladstone: 700,000. That's the latest COVID death count to dominate a headline in the United States. Over the last 19 months, we've seen a steady trickle of these morbid milestones in the news. They are one way to measure and try to understand the COVID 19 pandemic. In the world of journalism, death is a metric, it's important. It indicates significance, newsworthiness, tragedy, but death also is an inevitable part of the human experience.
This is a fact that Katie Engelhart highlights in the title of her new book, The inevitable: Dispatches on the Right to Die. Katie Engelhart is a former NBC and Vice News journalist. Her story about the outbreak of COVID 19 in Kirkland, Washington won a George Polk Award for magazine reporting. In her book, which came out last March, she focuses on the stories of six people who are seeking physician-assisted deaths. Katie, welcome to the show.
Katie Engelhart: Thanks so much for having me.
Brooke: In your book, you spoke to people who are looking for help dying. You also spoke to their family members, doctors, Right to Die activists. What got you started on this fraught topic?
Katie: I think the origin of this book is less than exciting. I was working as a staff reporter in London. I was assigned to cover a predictable parliamentary debate happening in Britain about whether or not to pass right-to-die legislation. You had people arguing that Right to Die law is allowed for patient autonomy and dignity at the end of life. On the other side, you had people arguing that there would soon be a slippery slope, and if we passed these laws, we'd end up in a situation where vulnerable people would be coerced into premature death.
In the end, the British government didn't pass the law, but it was in the course of reporting that legal story that I became aware of a lot of things happening outside of the law, outside of public conversation. I realized there were many people in Britain and beyond who weren't waiting for legislators to pass laws. There was, in effect, a kind of underground of euthanasia advocates and euthanasia seekers who were making things happen. That got me started on really a five-year reporting journey to get to know who these people were.
Brooke: You had presumed that these Right to Die Laws were radical, but later, it seemed to you that the laws weren't radical at all.
Katie: Yes. I assumed that because these laws were rare, they were offering something that was really far outside the scope of normal medicine, but about 20% of Americans live in a place where they can access assisted death, but to qualify, a patient needs to be terminally ill, with six months or less to live. In most situations, people end up using these laws weeks or even days before they would otherwise have what we might call natural death.
It tends to be that when these laws are created, people accept them as making sense and being rationally constructed, but of course, everything about the laws is arbitrary. Legislators got together and then they imposed this six-month limit because six months is a nice clean figure. Six months is also what qualifies someone for hospice care. When countries set eligibility criteria for assisted death, they're effectively creating a set of philosophical norms around who deserves and who doesn't deserve to die. The United States has created a very narrow set of laws. In other places, we see the laws are open to, say, people with dementia, to people with mental illness. To people who are getting older and don't want to grow very, very old. So, there's different ideas of what the law can look like.
Brooke: Is that why you ordered the book with the profiles becoming increasingly more morally ambivalent as you went, starts out cut and dry, and gets pretty murky?
Katie: Yes. As I was reporting, I was feeling more uncertain than I expected. I was finding myself a lot more ethically challenged than I expected. I had this sense of squirming in my role as a reporter all the time, because I wasn't sure that what I was seeing or what I was doing was correct or decent or safe. I wanted readers to feel the same way. As you said,
the book opens with what we might call a fairly straightforward death. I was present for the legal assisted death of a man in California, 89, prostate cancer, lived a great life. His three children were supportive. They were holding his hands while he died. If he hadn't had an assisted death, he probably would've died within a week anyway. I think a lot of readers heard that story and were moved by it, but thought, "This makes sense. This person's death is reasonable and rational."
Brooke: Give me an example where it gets murkier.
Katie: Yes. I spent a number of months with a woman named Deborah Koosed who lived in Oregon on the coastline. Deborah had been diagnosed with dementia, an early moderate stage of dementia, still living alone. Her husband had recently died. She decided that she wanted to end her life before, in her words, she would lose herself fully. She really had this nightmarish vision of ending up in a nursing home where she was being mistreated, or at least cared for in an unloving way, and was unable to advocate for herself or even necessarily understand how and why she was hurting.
Deborah ended up connecting with some Right to Die activists who taught her a method for ending her life peacefully and painlessly, she was told. She did take her life. I spoke with her a couple of hours before she did. There were tricky aspects to Deborah's story. She was doing pretty well. She worried a lot about progressing. She constantly searched for evidence of her decline, but I didn't see any.
Certainly, she had months or years of decent independent life ahead, according to her doctors. Also, her story was messy because there were things that had nothing to do with dementia, motivating her decision. She was very clear that she wanted to die before she lost her memory, but also before she lost her home. When I read newspaper articles about the right to die, I never see money mentioned. I never see family drama mentioned. These things complicate the story. Deborah's story was certainly very complicated.
Brooke: I think a lot of it has to do with our views towards the very old, that they are children again.
Katie: I think there's so much obfuscation and euphemism around end-of-life care. People pass away. They slip away, they leave this earth, and I really try to offer a challenge to that. In my book, people don't pass away, they're given sedative drugs, which lead to dehydration, and then kidney failure, which is their ultimate cause of death. The death certificate will say cancer. I try to be really specific because I don't necessarily think this obscure language helps us.
Brooke: Which euphemisms bother you the most?
Katie: Talking about assisted death, I never used death with dignity, which is a phrase that some advocates use. There's a big lobby organization in the United States called Death With Dignity. I think both sides of the so-called Right to Die debate have tried to seize the idea of dignity as their own. The Republican party a few years ago had a platform item talking about the dignity of life in which they recommitted themselves to opposing assisted dying law. On the other hand, advocates talk a lot about assisted dying as a way to preserve dignity. I think that both sides are guilty of creating a setup whereby some deaths are somehow not dignified. I don't think that's correct.
Brooke: If you had a dignified life, then even if the death comes via an errant banana peel, it doesn't destroy your dignity.
Katie: Yes. Some philosophers think the idea of dignity is redundant. That really we're using it as a synonym for autonomy. We should be talking about autonomy. People often, their first response to me was, "I want an assisted death because I want my death to be dignified." I'd say, "What does that mean?" I expected from these dying people some sort of transcendent wisdom.
They would give me some definition of what dignity means to them that would be significant and weighty. I found majority people I spoke to equated dignity pretty closely to sphincter control. In other words, they thought their lives would be dignified until they, am I allowed to say, shit their pants? Until they couldn't use the bathroom on their own, until they needed a spouse to help them clean themselves after using the bathroom. For them, that was a pretty clear line. A lot of people told me that they planned to end their lives when they found themselves losing control of their bowels.
Brooke: Suicide. You said that proponents of Right to Die laws hate the word?
Katie: Yes. You can tell whether someone is pro or anti assisted dying by the language they use. I think it makes sense that Right to Die groups have distanced themselves from the word suicide. That's because when we think of suicide, we're usually thinking of despair suicides, motivated by impulse or mental illness, by despair. That's most suicides, to be clear. I think someone who is, say, sick with cancer for many years and decides she wants to die to save herself a few weeks of pain, that decision is profoundly different. A lot of patients who choose assisted death don't see what they're doing as suicide, but I do use the word suicide sometimes and that's because other people see the act very much as a suicide. I had it as my practice to adopt the language of the person whose story I was telling. Some advocates have tried to come up with a new language. They'll talk about self-deliverance or exit, a person's planning his or her exit.
Brooke: What are some of the most common misconceptions about physician-assisted suicide or euthanasia laws?
Katie: First of all, my impression is that in the United States people really have no idea what's legal and what's not. It's not only that they've not thought about it. They don't know how they feel about it. They don't really know what it is. In other words how it works. How a person is actually made to die. We can contrast this with another controversial medical procedure like abortion. Most adults in the United States probably know roughly what an abortion is. Certainly, they know what they think of abortion.
That's just not the case for assisted dying. I think also people misunderstand how narrow the laws are in the United States. They need to be terminally ill, within six months of a natural death, in the opinion of two doctors. They need to be of sound mind at the time of their deaths. That's really quite a narrow criteria. Oftentimes, critics of the law exploit what people don't know, and they say these laws, once they're passed, they will necessarily, inexorably expand and expand until all sorts of people qualify and soon you'll have poor people and old people being lined up at the euthanasia clinics. That's not true at all. We have many years of data from places like Oregon that show that actually, it's primarily older cancer patients who end up using this law.
Brooke: Let's talk about the coverage. You wrote, "The push to wrest bodily control at the end of natural life from the behemoth powers of big medicine and the state have been defined by individual stories, generally of white women whose personal end-of-life tragedies become family dramas, and then viral national dramas, then talking points and turning points and a larger political crusade for patient autonomy." Could you summarize where those narratives that have emerged from those big cases have left us?
Katie: I think what we would call the patient autonomy movement which is still ongoing, began here in the US in the '80s and '90s with these very public stories all involving younger women who, because of some accident or substance abuse, ended up in a state where their bodies were still functioning with machine assistance, but effectively dead to the world. Unable to communicate, unable to absorb any kind of stimulation, unable to understand anything.
Brooke: That is a little hard to know, right? We hear people in comas sort of can hear what's going on, we know that people with locked-in syndrome can convey what they understand or what they're aware of. Then there are people who are simply, by all measurable forms, brain dead.
Katie: Brain death is measured by a pretty specific set of criteria, but in all of these cases, the women ended up being attached to machines or equipment that sustained their bodies. Even though their minds, their selves were no longer present in that body. In the case of Terry Schiavo, for instance, I remember very vividly watching the Terry Schiavo case on CNN when I was young, there was a dispute within the family, parents versus husband over whether those machines should be withdrawn and the body of Terry Schiavo be allowed to die. This was a drama that was seized on by the religious right, George Bush ended up getting involved.
Brooke: The senior George Bush.
Katie: A feeding tube was inserted and then taken away and then reinserted and in the end, Terry Schiavo did die in hospital. I think that the Terry Schiavo story and the others too, got people thinking about what they would want to have happen to them if they ended up in such a situation. The right-to-die movement takes us all a step further, because, of course, we're not talking about family members making decisions on behalf of an incapacitated relative, we're talking about people making their own decisions.
In the mid 20th century certainly, it was common practice for doctors to not tell patients that they had cancer. It was thought that that would lead to a loss of hope which would be very dangerous for the patient's chance at recovery. Now we see a lot more transparency. We see people asking for the ability to make decisions in collaboration with doctors, rather than having their doctors make decisions for them.
Brooke: I think it was more common to keep that knowledge from female patients. Men had to take care of business if they were leaving, right?
Katie: That's absolutely true. I think we're seeing patients react against this American trend to treat, treat, treat. Say a breast cancer patient who decides not to do that second round of chemo that probably won't work and instead to go home and spend a peaceful final few months with her family. That's something we're used to seeing now. I don't think we necessarily would have seen that several decades ago, or at least not spoken about so openly.
Brooke: The coverage has created questions for people who consume the news, has prompted thoughts about the machines that sustain life beyond the body's own ability to do so. That big medicine potentially takes over the biggest decision a person ever makes. How has it left us thinking? Who's winning this argument?
Katie: I think coverage of this issue has generally been quite weak. As I said earlier, I think most Americans who I know have no idea whether assisted dying is legal in their state. They have no idea how it works. In general, I think the subject is hugely underreported. When we do have news articles about proposed assisted dying legislation, criticisms of the law are often published in a unchecked way. Articles might say opponents of the law worry that once the laws are passed, people with disabilities will be coerced or pressured to have assisted deaths.
Well, we actually have a quarter century's worth of data from Oregon and many years worth of data from other states. We know that that has not come to pass. Most of the coverage that I read fails to mine that data, which is actually very good and very easily accessible. Most people who access the law are white, educated, have insurance, older. They're not a patient group we typically worry too much about when it comes to coercion or neglect.
Brooke: You've talked to people in the disability movement. What was your experience in those conversations?
Katie: A number of large disability rights organizations in the United States have opposed assisted dying legislation. Obviously informed by a very real history of not receiving adequate medical attention, of being subject to all sorts of bias and sometimes abuse, and I'm very, very sympathetic to any fears coming from that community around these laws. I interviewed someone from an organization called Not Dead Yet. He talked to me about the typical patients who do choose assisted dying.
He says to me, I'm paraphrasing here, "Why are they choosing to die? They're choosing to die because they fear being dependent on others. They fear needing help with things like going to the bathroom and showering, losing mobility, which might lead them to not be able to do activities they enjoy. What effectively are we allowing people to die for? We're allowing people to die because they're becoming disabled and they don't want to be," and he sees that as a very dangerous situation. A person with disabilities, with, say, mobility-related disability would not qualify to die under the law as it exists in any American state.
Brooke: It has to be, you noted, a progressive situation. Like someone with ALS will be disabled at some point, but they'll be dead too at some sooner point than someone who was born with a disability and has lived with it their whole life.
Katie: Exactly. Of course it is true that prognostication is a fuzzy science. Doctors aren't always terribly good at predicting how long someone has to live.
Brooke: That is true.
Katie: The six months mark is arbitrary. I met a lot of patients who were really frustrated by that limitation. One of the chapters of my book follows a young woman with multiple sclerosis, over several decades probably will lose a lot of her physical capabilities. She's frustrated because she would like to access the law, but she can't, because she still could live 10 more years, and she, at some stages has been quite envious of people who have a more rapidly progressing disease like ALS, who might qualify for the law because their doctors are able to predict with more certainty the time is nigh.
Brooke: Some have argued within the disability movement that maybe access should be expanded until disabled people can actually qualify.
Katie: Yes. Disability does play into both sides of the debate. In the United States, assisted dying laws require that patients ingest a lethal cocktail on their own. They can't have a physician inject them. They can't have a physician pour medication down their throat. They have to take the medication themselves, meaning that some patients can't qualify, not because they don't meet the basic eligibility criteria, they're dying. They're going to die soon, because they can't physically lift a cup of medication to their lips.
Some of these people have argued that the law discriminates against people with disabilities. Certainly, I think that's a very fair argument. We have a situation in states where someone, say, with breast cancer might qualify for the law, but someone with a brain tumor who can't move his hands, wouldn't qualify just because he can't move his hands. We're privileging the suffering of one patient over another, just because of where the tumor lies in their body.
Brooke: You've noted that the voice of the Right to Die Movement is frequently the voice of doctors?
Katie: I think there's something very predictable about the way that assisted dying is covered in the US. Most of the stories we're presented with are communicated by doctors, even when a patient's voice is heard, they're just very sanitized and very uncomplicated. Most news articles start with a very sympathetic character, say a woman in her 70s, who's got diagnosed with this terrible cancer and she fought it valiantly, but she realizes that she can't win, and specifically because of her cancer, she is choosing to end her life. Doctors comment on it, and we interview someone who believes that there'll be a slippery slope, and then it's over.
I feel that I need to be careful when talking about this, but a lot of times, journalists are introduced to these patients by organizations that promote assisted dying. Sometimes those people have been given media training beforehand. I'm not suggesting that these patients are acting as mouthpieces for lobby groups, or that they're not genuine in any way, but I'm just saying that the stories have sometimes been pre-selected and finessed a little bit and they're very on message. So, I didn't find it particularly helpful to be introduced to patients in this way. The news articles, as a result, they tend to explain assisted dying as a purely medical choice. The stories that I reported were a lot messier.
Brooke: Yes. Finances figured in a lot more than we ever hear in those news accounts, worries about the cost of healthcare, about mortgages.
Katie: Absolutely, or family drama or religious guilt, or spite, like if I died, my father would know that he should have listened to me when I said I wanted to die. People are messy. People misunderstand their medical histories and their prognosis. People feel despair. People with cancer sometimes have mental health issues too, that impact their choice, depression, anxiety. I think that's really been missing from the debate. When states like Oregon do record information on assisted dying, it's always information that comes from forms that the doctors filled out about why their patients are choosing assisted death. It's hard to access the voice of patients themselves.
Brooke: It's weird because the doctors giving interviews aren't necessarily interacting all that much with the patient.
Katie: Well, exactly. I think it's Oregon that asked that question. There's a checkbox, if money is motivating the patient. It's never checked. Well, who talks to their doctor about money problems? Especially a doctor you don't know that well. I think it's obvious that we'd get skewed data in that sense. It's America and it's a healthcare issue. Of course, money's involved. Of course it is.
Brooke: In your book, you noted that it's really hard to get access to some of the best drugs because the prices are so high.
Katie: Yes. This is sort of a wild history. When Oregon and other states first legalized assisted dying, doctors tended to prescribe a barbiturate called pentobarbital. A patient would drink it. Breathing would slow probably over the course of 20 minutes, and then she would die. The problem was that pentobarbital was manufactured in Europe. Eventually, the European Union put an export ban on the drug to the United States because governments there found that the drug was sometimes being used to execute patients on death row.
Of course, pretty much every country in the world opposes capital punishment, and so the EU made this decision. Doctors ended up switching to another barbiturate, but that drug was acquired by a Canadian pharmaceutical company which racked up the prices. Patients who wanted to have an assisted death were sometimes paying up to $5,000. This was not being subsidized by insurance. What happened was a few years ago, a couple of doctors in Seattle got together in a conference room and decided they were going to figure out some cocktail of drugs that would peacefully, quickly, reliably end the lives of their patients. They actually brought in a veterinarian who had experienced euthanizing animals to consult with them.
Brooke: This is a wild story.
Katie: [chuckles] Over the course of the weekend, they came up with this cocktail, included respiratory drugs and cardiac drugs that they figured would work. It had the added advantage being something that a compound pharmacist, a specialized pharmacist, could put together, which had the benefit of meaning that these doctors didn't have to go to the FDA for approval. Compound drugs don't need FDA approval in the same way. They didn't need to do years of testing proving that the drug was safe, they could just start using it. I talked to one doctor, she started prescribing the cocktail to her patients and sitting beside them as they died, measuring their heart rates, monitoring time to death.
Over the years, the drug has been tweaked. It's been shared with doctors in other states, and it's the main cocktail that doctors use. It was developed on the fly, and that's an interesting thing about these laws. They legalize a new form of dying into being, but they don't give the medical community any instruction on exactly how the death should be carried out.
Brooke: What do you think about books like Final Exit, The Practicalities of Self Deliverance and Assisted Suicide for the Dying by Derek Humphrey? There's also another one, A Chosen Death. The Dying Confront Assisted Suicide by Lonnie Shavelson. These authors can't be charged with assisting in suicide. Can they?
Katie: Well, certainly, there are manuals that exist telling people how to end their lives. All the time when I was telling people about this book, they'd say to me, "Well, why do we need these laws? People can just die on their own. People do end their lives all the time." First of all, a lot of attempts to end life are not successful. They don't work or they're painful, or they're prolonged. People are really fearful of dying badly.
They want to know that something will work quickly and that it won't be messy. It won't leave a mess for family members to find afterwards. That's what these manuals help people with. The book Final Exit was a surprise New York times, best seller, I think in the '90s, because people really do want access to this information. I contacted the author and all these years later, he still sells a couple of copies a day and he still gets calls from people all over the world who want to ask very specific questions about some, say cardiac medication they've been hoarding.
The information is out there. That was important to me when I was writing this book because all throughout the process, I had people say to me, "Well, should you really be publishing this? Won't your book, read a certain way, offer a how to guide for patients?" A lot of this anxiety comes out of fears around reporting on suicide. Newspapers, magazines, broadcast stations are often told not to report on suicide lest they inspire copycat suicides.
I don't think anyone's going to read my book and learn something they didn't know after five minutes of googling. I don't necessarily think these prohibitions on reporting or encouraged prohibitions on reporting are relevant in an age when this information is so accessible. As to the question of whether someone can get in trouble for sharing this information, that's actually pretty interesting.
To kill yourself, to commit suicide in the United States is legal, but to assist someone else in the legal act of committing suicide is illegal. That brings us to the question of what constitutes assistance, which is complicated and very state by state. I did interview a lawyer who's involved in a group that provide people with information and he'd done this big survey. He basically found that in most places, when we say assisting a suicide, the courts mean physical assistance. You handed someone medication, you injected someone with a drug.
In a few places, the definition is fuzzier and perhaps will allow someone to be charged with assistance just for providing information or means. It's very tricky, and this lawyer Robert Reva said to me, "If that interpretation is correct, it could be that in some states, someone could walk into the library, ask a librarian for a copy of this New York Times best-selling book, Final Exit, have the librarian hand over the copy and later have the librarian be charged, if that person goes home, reads the book, and uses it to end his life.
Brooke: Do you think that this moment is an inflection point for the Right-to-Die Movement here in the US?
Katie: I do. The movement has progressed slowly, but I think every few years we see another state debate a right-to-die law. These laws are slowly being passed in new places. Most recently, states like New Jersey. I also think there's pressure being put on the American laws by right-to-die law in other countries, which have much more liberal interpretation of what suffering at the end of life looks like. We could look at Canada, for instance. In Canada, a person doesn't have to be within six months of a natural death.
The only need to be dying of something and suffering in a way that can't be alleviated, and to them is unbearable. The Canadian law leaves it up to the patient to decide what unbearable suffering means. As of next year, the Canadian law will also be open to patients who don't have any physical illness at all, but are dealing with mental health illnesses and psychiatric conditions. Things like chronic depression, that's obviously very controversial, but proponents of that expansion in Canada have argued that we shouldn't privilege physical over mental suffering.
That suffering is suffering and any patient who's suffering should have the option to die. I suspect that there will be more pressure over time in places where assisted dying is legal to reconsider that eligibility criteria, and maybe to expand the access points. More and more, we'll hear from people who are specifically worried about dementia and who would want some sort of option to end their lives, if and when.
Brooke: You've explained how this is a difficult topic. It's under-reported or not fully reported, it's studded with euphemisms. You cited a Pew Study that 70% of Americans are reluctant to talk about death. That the majority of people over 65 never discuss death, even with their doctors. What do you think listeners should do with the reporting that they are likely to find?
Katie: I hope the people who read my book, realize that decisions are made at the end of life always. We use this phrase, natural death, all the time, which I find sort of strange because what does that mean? A lot of deaths take place in hospitals. They involve procedures or substances required to alleviate pain, decisions are made about how and when to use those drugs and they're often made by doctors. I frequently have met people who tell me about, say, the death of a parent or grandparent that was confusing. Somehow they were in the hospital for a few days, and I remember the doctor saying he was going to give her something.
It was going to make her settled and then she fell asleep and I didn't know if that was the drugs or was that just her being sick and I forget exactly when she died, they didn't give us an exact time. These deaths are confusing because decisions are being made by medical professionals, perhaps because the patient is no longer able to consent to anything. If patients do want to make their own decisions, they usually have to meet them early and be pretty clear and pretty aggressive about what they want and when they want it.
Brooke: Where do you end up over this long journey you've been on? How far have you traveled in and what direction?
Katie: I feel confident giving an opinion on American-style right-to-die laws. I think they should exist in all places. They're very limited, very few patients access them. The patients who access them really want this and go through an awful lot of trouble to prove that they are serious about their choice. I think it would be just to expand access to these laws. I also have a sense that the laws as they exist in the United States are unfair. The practice that the laws go against their spirit.
The idea that someone might be denied access to an assisted death, simply because he has a condition that limits his ability to lift a cup of medication to his lips. That seems ridiculous to me, that seems inconsistent and unfair. I also think the six month criteria is very limiting and excludes a lot of people who are suffering very seriously, but who don't have a predictable course of decline. The eligibility criteria deserve another look. It is worth asking about the different ways that people can suffer and what we might start to allow to factor into these kinds of choices.
Brooke: What about loneliness, sadness, poverty, things that certainly the latter, there are other ways to address?
Katie: I started out with the sense that people should be allowed to die. People deserve to die when there's nothing they can do to avoid it. Someone with cancer treatment has failed, they're dying. They deserve an assisted death. They have no choice, but to die. If someone is lonely, well, surely we as a society can fix loneliness and so someone should not be allowed to die on account of loneliness, but we're not fixing loneliness and people are lonely and people are suffering.
What we're effectively asking people to do is to hold on, to wait, to suffer in the service of the hope that over several years, enough pressure will build such that there is a big social political revolution in the United States and we start to fund social programs differently and then loneliness is alleviated, I don't know. I think we're asking an awful lot of people by denying them access to the kinds of deaths they want when they want it.
Brooke: Katie, thank you very much.
Katie: Thank you so much for having me on.
Brooke: Katie Engelhart is a journalist and the author of The Inevitable: Dispatches on the Right to Die. Thanks for listening to this week's On The Media midweek podcast and check out the big show on Friday. It'll be up ready for your delectation around dinner time. I'm Brooke Gladstone, and this is WNYC.