On the Right to Die
BROOKE GLADSTONE This is On the Media, I'm Brooke Gladstone.
780,000. That's the latest COVID death count to dominate a headline in the U.S. Over the last 22 months, we've seen a steady trickle of these morbid milestones in the news. They're 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 and tragedy. But death is also 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 You know, when country set eligibility criteria for assisted death are effectively creating a set of philosophical norms around who deserves and who doesn't deserve to die. And 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 GLADSTONE Katie Engelhart is a former NBC and Vice News journalist. In her book, which came out last month, she focuses on the stories of six people who are seeking physician-assisted death. Katie, welcome to the show.
KATIE ENGELHART Thanks so much for having me.
BROOKE GLADSTONE What got you started on this fraught topic?
KATIE ENGELHART I was working as a staff reporter in London, and I was assigned to cover parliamentary debate in Britain about whether or not to pass right to die legislation. You had people arguing that right to die laws 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, 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 realized there were many people in Britain and beyond who weren't waiting for legislators to pass laws. Euthanasia advocates and euthanasia seekers who were making things happen. That got me started on really a 5 year reporting journey. I had this sense of squirming in my role as a reporter all the time.
BROOKE GLADSTONE So is that why you ordered the book, with the profiles becoming increasingly more morally ambivalent as you went. Starts out cut and dried – and gets pretty murky?
KATIE ENGELHART Yeah, 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. So as you said, you know, the book opens with a 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 have died within a week anyway. And 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 GLADSTONE Give me an example where it gets murkier.
KATIE ENGELHART Yeah. So I spent a number of months with a woman named Debra, who lived in Oregon on the coastline. Deborah had been diagnosed with early moderate dementia. Her husband had recently died. She had this nightmarish vision of ending up in a nursing home, being mistreated, or at least cared for in an unloving way, unable to advocate for herself or even understand how and why she was hurting.
BROOKE GLADSTONE Mhmm.
KATIE ENGELHART 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 Debra's story. She was doing pretty well. She constantly searched for evidence of her decline, but had months or years of independent life ahead, according to her doctors. Also, 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 home. When I read newspaper articles about the right to die, you know, I never see money mentioned. I never see family drama mentioned. These things complicate the story, and Debra's story was certainly very complicated. And I think there's so much obfuscation in euphemism.
BROOKE GLADSTONE Which euphemisms bother you the most?
KATIE ENGELHART Talking about assisted death, I never used death with dignity. You know, 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, you know, 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, and I don't think that's correct. 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. I found a majority of people I spoke to, equated dignity pretty closely to sphincter control. For them, that was a pretty clear line. And a lot of people told me that they planned to end their lives when they found themselves losing control of their bowels.
BROOKE GLADSTONE What are some of the most common misconceptions about physician-assisted suicide or euthanasia laws?
KATIE ENGELHART First of all, my impression is that in the United States, people really have no idea what's legal and what's not, and they don't really know how a person is actually made to die. Also, people misunderstand how narrow the laws are. About 20 percent of Americans live in a place where they can access assisted death. But to qualify, a patient needs to be terminally ill within six months of a natural death in the opinion of two doctors, and they need to be of sound mind at the time of their death. Oftentimes, critics of the law exploit what people don't know, and they say these laws will expand and expand. And soon you'll have poor people and old people being lined up at euthanasia clinics, and 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 GLADSTONE 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 in the state, have been defined by individual stories. Generally of white women whose personal end of life tragedies become talking points and turning points in a larger political crusade for patient autonomy.'
KATIE ENGELHART Yeah, I think what we would call the patient autonomy movement 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. In the case of Terri Schiavo, for instance, there was a dispute within the family, parents versus husband over whether those machines should be withdrawn and the body of Terri Schiavo be allowed to die. This is a drama that was seized on by the religious right. George Bush ended up getting involved. A feeding tube was inserted and then taken away and then reinserted, and in the end, Terri Schiavo did die in hospital. And I think that the Terri 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. You know, 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 patients chance at recovery. Now we see a lot more transparency. We see 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.
BROOKE GLADSTONE So the coverage has created questions. But who's winning this argument?
KATIE ENGELHART I think coverage of this issue has generally been quite weak. In general, I think the subject is hugely underreported. When we do have news articles about proposed assisted dying legislation, articles might say opponents of the law worry that once the laws are passed, people with disabilities will be pressured to have assisted deaths. Well, we actually have a quarter century worth of data from Oregon and many years worth of data from other states, and 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. They're not a patient group we typically worry too much about when it comes to coercion or neglect.
BROOKE GLADSTONE You've talked to people in the disability movement. What was your experience in those conversations?
KATIE ENGELHART A number of large disability rights organizations in the United States have opposed assisted dying legislation. Informed by a very real history of not receiving adequate medical attention, of being subject to all sorts of bias and sometimes abuse. Someone from an organization called Not Dead Yet, he talked to me about, you know, the typical patients who do choose assisted dying. And he said to me, Why are they? You know, I'm paraphrasing here, but why are they choosing to die? They're choosing to die because they fear being dependent on others. Needing help with things like going to the bathroom and showering. Losing mobility. So effectively, 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. But a person with, say mobility related disability would not qualify to die under the law in any American state.
BROOKE GLADSTONE It has to be a progressive situation like someone with ALS will be disabled at some point, but they'll be dead at some sooner point than someone who was born with a disability and has lived with it their whole life.
KATIE ENGELHART Exactly. And of course, it is true that doctors aren't always terribly good at predicting how long someone has to live, and the six months mark is arbitrary. You know, 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, you know, over several decades probably will lose a lot of her physical capabilities. She would like to access the law, but she can't because she 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 may qualify for the law because their doctors are able to predict with more certainty the time is nigh.
BROOKE GLADSTONE Some have argued, within the disability movement, that access should be expanded until disabled people can actually qualify.
KATIE ENGELHART 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, but because they can't physically lift a cup of medication to their lips. And so some of these people have argued that the law discriminates against people with disabilities. We have a situation in states where someone say with breast cancer might qualify for the law, but someone with a brain tumor wouldn't qualify just because he can't move his hands. So we're privileging the suffering of one patient over another just because of where the tumor lies in their body.
BROOKE GLADSTONE You've noted that the voice of the right to die movement is frequently the voice of doctors.
KATIE ENGELHART You know, I think there's something very predictable about the way that assisted dying is covered in the U.S. Most of the stories are communicated by doctors, even when a patient's voice is heard, I mean, they're just very sanitized and 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 she is choosing to end her life. Doctors come and we interview someone who believes that there'll be a slippery slope and then it's over. A lot of times journalists are introduced to these patients by organizations that promote assisted dying, and 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 the stories have sometimes been pre-selected and they're very on message. The news articles, as a result, tend to explain assisted dying as a purely medical choice. The stories that I reported were a lot messier.
BROOKE GLADSTONE Yeah, finances figure in a lot more than we ever hear in those news accounts
KATIE ENGELHART 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. I mean, people are messy. People misunderstand their medical histories and their prognosis. People with cancer sometimes have mental health issues too the impact, their choice, depression, anxiety, and 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 in forms that the doctors fills out. There's a checkbox, if if money is motivating the patient, you know, it's never, never checked. Well, who talks to their doctor about money problems, especially a doctor you don't know that well. And so I think it's obvious that we'd get skewed data in that sense. It's America and a health care issue. Of course, money is involved. Of course it is.
BROOKE GLADSTONE You noted that it's really hard to get access to some of the best drugs because the prices are so high.
KATIE ENGELHART Yeah, this is sort of a wild history. When Oregon and other states first legalize assisted dying, doctors tended to prescribe a barbiturate called pentobarbital. Patient would drink it. Breathing would slow, probably over the course of 20 minutes, and then she would die. Problem was that pentobarbital was manufactored 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 $5000, not subsidized by insurance. 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 GLADSTONE This is a wild story.
KATIE ENGELHART 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 of being something that a compound pharmacist, so a specialized pharmacist could put together, 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, so they didn't need to do years of testing. 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 times of death. Over the years, the drug has been tweaked, and it's the main cocktail that doctors use. But yeah, 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 GLADSTONE What do you think about books like Final Exit: The Practicalities of Self Deliverance and Assisted Suicide for the Dying by Derek Humphry. There's also another one A Chosen Death: The Dying Confront Assisted Suicide by Lonny Shavelson. These authors can't be charged with assisting in suicide, can they?
KATIE ENGELHART Well, people are really fearful of dying badly. They want to know that something will work quickly and that it won't leave a mess for family members to find afterwards. And that's what these manuals help people with. The book Final Exit was a surprise New York Times bestseller, I think, in the 90s. 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. As to the question of whether someone can get in trouble for sharing this information, that's actually pretty interesting. To commit suicide in the United States is legal, but to assist someone else in the legal act of committing suicide is illegal. And that brings us to the question of what constitutes assistance, which is complicated and vary state by state. So I did interview a lawyer who's involved in a group that helps provide people with information, and he'd done this big survey. And 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, but in a few places, the definition is fuzzier and perhaps will allow for someone to be charged with assistance just for providing information or means. And this lawyer, Robert Rivas, said to me, if that interpretation is correct, it could be that in some states, someone could ask a librarian for a copy of this New York Times bestselling 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 GLADSTONE Do you think that this moment is an inflection point for the right to die movement here in the U.S.?
KATIE ENGELHART I do. Every few years we see another state debate a right to die law. These laws are slowly being passed in new places. Most recently, you know, states like New Jersey. There's pressure being put on the American laws by right to die laws in other countries, which have much more liberal interpretation of what suffering at the end of life looks like. In Canada, for instance, a person doesn't have to be within six months of a natural death. They 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. So 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, and any patient who's suffering should have the option to die. I suspect that 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 GLADSTONE So where do you end up over this long journey you've been on? How far have you traveled and in what direction?
KATIE ENGELHART Yeah, 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 go through an awful lot of trouble to prove that they are serious about their choice. So 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.
BROOKE GLADSTONE What about loneliness, poverty, things that there are other ways to address?
KATIE ENGELHART Yeah. You know, 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. So 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. So what we're effectively asking people to do is to hold on, to wait, to suffer in the service of, I don't know – 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 death they want when they want it.
BROOKE GLADSTONE Katie, thank you very much.
KATIE ENGELHART Thank you so much for having me on.
BROOKE GLADSTONE Katie Englehart is a journalist and the author of The Inevitable: Dispatches on the Right to Die.
And that's the show. On the Media is produced by Leah Feder, Micah Loewinger, Eloise Blondiau, Rebecca Clark-Callender and Eli Cohen with help from Juwayriah Wright. Xandra Ellin writes our newsletter and our show is edited by me and Katya. Our technical director is Jennifer Munson. Katya Rogers is our executive producer. On the Media is a production of WNYC Studios. I'm Brooke Gladstone.