New book examines gaps in laws like Oregon’s Death With Dignity Act

Journalist Katie Engelhart is the author of a new book — “The Inevitable: Dispatches on the Right To Die.” The book examines thorny questions about mental health, disability rights and costs of care when it comes to laws like Oregon’s pioneering Death With Dignity Act. Engelhart also explores what happens when people can’t legally access a physician’s aid in dying.

The following transcript was created by a computer and edited by a volunteer

Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. Oregon made history in 1994. They approved measure 16, which came to be known as the death with dignity act. That made Oregon the first place in the world where voters legalized physician aid in dying. It’s meant that terminally ill patients with under six months to live can get prescriptions for lethal medications. They have to take the medicine themselves.

Since then, other states have followed, but in the U S and in most of the world, huge questions remain. What if someone is in terrible pain, but has more than six months to live? What about mental illness in the absence of a physical ailment or dementia? What about people who are old and tired and just don’t want to go on living? These are not imagined scenarios or academic questions. They are based on the anguished experiences of real people who want to die on their own terms.

The journalist Katie Engelhart has spent the last six years talking to these people along with their family members and their doctors. She’s also been talking to healthcare experts and ethicists who have huge misgivings about a world where it’s easier for many people to legally get help to end their lives. Her new book about this subject is called The Inevitable: Dispatches on the Right to Die. Katie Engelhart, welcome back to Think Out Loud.

Katie Engelhart: Thank you so much for having me again.

Dave Miller: A lot of your book focuses on people who want to expand right to die laws as I noted, but I thought we could start with the current system as it’s been playing out in Oregon, because Oregon wasn’t just a pioneer in terms of laws in this country, it also has a ton of data. What stands out to you in terms of the demographics of who has used Oregon’s law to end their lives?

Katie Engelhart: Yeah, I mean, the data from Oregon is pretty clear and pretty consistent over time. The people who are accessing assisted death in this state are generally over 65. They are white, almost exclusively. They have some level of college education. They are insured, they have health insurance, most have cancer. This is really significant because when the Death with Dignity law first passed in Oregon in the 90′s, critics worried that it would be vulnerable, poor, uninsured people from minority groups or disenfranchised groups who were pushed into assisted death. Maybe because they didn’t have access to good healthcare, or they didn’t have access to medical insurance. In fact, we’re seeing the exact opposite. It’s people who are traditionally quite privileged in a lot of ways who are dying in this way.

Dave Miller: How do you explain that? I mean, and what does it say about the Oregon system and others like it?

Katie Engelhart: I think there’s a few things at play. I think first, things have changed a lot in Oregon since the law passed, but just because something is legal in a place doesn’t mean it’s easily accessible. So there are parts of Oregon, and certainly parts of other states where assisted death is legal, where people have to work quite hard to find a doctor who’s willing to help them. Either because their own doctor is unwilling, as opposed to the law, or just inexperienced and uncertain about how to proceed.

So we tend to find that people who receive assisted death are people who are used to navigating the medical system, getting their way, advocating for what they want, and I think it goes about saying that those people tend to have a certain kind of social capital, often financial resources, English language proficiency. But I think also in a lot of places, and a lot of areas of end-of-life healthcare, we see discrepancy in the country. So we see that African-Americans for instance are much less likely to access hospice and high-quality palliative care at the end of life. So I think there’s also an access issue. Again, that’s really not what people expected and the feedback opposite of what critics had anticipated in the 90′s.

Dave Miller: Filling a prescription for lethal drugs is obviously not the same as using them. One California physician who helped many patients die said that having an effective mix of deathly drugs on hand and not even using them can be a kind of cure. What does he mean?

Katie Engelhart: I think it is important to note that every year, in Oregon and other places, significantly more people get a prescription for lethal drugs than take the lethal drugs. So I think last year in Oregon, over 350 prescriptions were written, but something closer to 250 prescriptions were filled and consumed. I think for a lot of the people that I met, their anxiety around death had a lot to do with control and feared loss of control. So for some people just having a drug, knowing they could take it if and when things got really bad and unmanageable, that gave them a sense of control that had been stripped away from them in all other ways. Certainly I met people who received the drugs and never ended up taking them but felt better knowing that they had that option.

Dave Miller: It’s interesting, you mentioned the word control there because, as you wrote, there’s a very specific fear of loss of control, that both research studies have found and that you, in a sense, confirmed in your interviews. That is that one of the biggest fears or anxieties of people considering ending their lives is the loss of control of their bowels or bladders. You wrote, what have we done to make people so ashamed to make them prefer nothingness to padded underwear? Do you feel like you got an answer to that question?

Katie Engelhart: Just to step back, I think when I started researching the subject, my expectation was that people would choose assisted death because they were in pain, either in the moment, or because they feared extreme pain in the near future. That’s really not what the data from Oregon suggests. People are more likely to say that they fear losing autonomy and dignity, and those are both sort of fuzzy words. So whenever I could in my reporting, I asked people, what is dignified to you? What do you mean by dignity?

It turns out it’s a hard question for people to answer. What’s much easier for people to answer is what is undignified. What would be a state of indignity for you? Again, when I started my reporting, I expected sort of poetic answers, maybe about wisdom and end of life and an authenticity butI instead, as you point out, what I heard from a lot of people was I don’t want to lose control of my bowels.

I don’t want to need help in the bathroom. There are a lot of things at play here, but I think for a lot of people, in addition to incontinence being extremely physically uncomfortable and limiting in a lot of ways, it’s sort of a metaphor for that final loss of control. When you need help going to the bathroom, you just need a lot of daily help. I think for a lot of people, that’s something they’re unwilling to accept, or they find difficult to imagine.

Dave Miller: It’s literally mortifying.

Katie Engelhart: Yeah. People feel betrayed by their bowels. They feel reduced by their bowels. But in the book I cited a study that was looking at terminally ill patients at a hospital, I believe in Pennsylvania. A lot of people, significant numbers, feared the loss of bowel control more than death. To me, that’s very sad. You can take a different look at it, which is to imagine a cycle of caregiving. Our parents care for us, and then we care for them when they’re older. But for a lot of people, I think a lot of the baby boomers who I spoke to, felt like it was something they couldn’t bear. They would rather die earlier.

Dave Miller: I’m glad you mentioned the generational aspect here. It seems too easy to focus on baby boomers and some of the notions that we’ve developed about a gigantic generation of people and maybe the generalizations about that. But, those generalizations are that this big cohort of people, they move through the world and as they move through it, they decided they want to make the world their own and make themselves very comfortable in it in every way. It it’s a gigantic and maybe dumb generalization, but there’s a version of that, that’s out there. To what extent does that explain the right to die movement broadly, worldwide?

Katie Engelhart: I think that generation, the baby boomer generation, has been not solely responsible, but an important contributor to this broader trend that we could call the patient autonomy movement. What we’re seeing now is in general, people want to be informed about their health. They want to make choices. They see themselves in a kind of collaboration with their doctor in terms of decision-making, rather than their doctors being this worshiped authority. Sometimes I have to remind myself that this is fairly new. As late as the 60′s, it was common for some oncologists to not tell patients when they had incurable cancer, because there was this idea that the doctors should maintain hope and the patient should keep her chin up. That would be better in the long run.

That idea seems wild now, that a doctor would purposefully mislead or lie to a patient in order to maintain control over the disease process. In a lot of ways, we would never accept that now. I think baby boomers have helped to push for this both for cultural reasons, and they have the money and the capital in a lot of situations to advocate for what they want and get it.

I think we see things that we didn’t see so commonly, even decades ago, people deciding after one round of chemo that, no, I don’t want a second round of chemotherapy, even though it might work, because I’m tired and I want to go home. I’d rather spend this time with my family, not trying to fight. This idea that patients can have more control over the ends of their lives and in some cases choose to die sooner than they might otherwise, but died better in their view, is relatively new.

Dave Miller: One of the themes that comes up in different contexts in the book is that the right to die movement is partly a response to really powerful currents in physical and in mental healthcare. This bias that a lot of people see among doctors that there’s always some other treatment that might work or another surgery or another medicine that death can be staved off. Do you think that the right to die movement could change the way medicine is practiced before the end of life?

Katie Engelhart: I definitely think it’s part of a reaction to this and, to go back to your earlier question about the baby boomers, a lot of people of that generation have watched their parents die. These very long protracted deaths that involve often years of pain or infirmity or disability where, you know, these deaths where, I’ve seen them, that they’re sort of normal, where one thing leads to the other, and no one really feels like they’re making choices and all of a sudden treatment stopped working and it’s a little confusing. Then there’s this hospital deaths. I think boomers are in a lot of ways reacting against that. But certainly what the medical profession promised us decades ago was, not only that we were going to live longer, but that we were going to live better.

There’s this idea of a compression of morbidity. That our years of disability and pain and old age, they’re going to shrink and we’re going to have longer, better, full lives. That hasn’t come to pass. The first part of it is true. We are living longer, but the idea that we’re always living healthier, that just hasn’t been the case. So I think we’re acknowledging that in ways that we weren’t even a few years ago, and I think that will inform the decisions that people make at the end of their lives.

Dave Miller: If you’re just tuning in, we’re talking right now with a journalist Katie Engelhart. Her new book is called The Inevitable: Dispatches on the Right to Die. You’ve pointed out that the U S is the only country with laws about physician aid and dying that requires people to self administer their drugs. What are the philosophical reasons for that requirement?

Katie Engelhart: When we’re talking about physician-assisted death, there’s really two mechanisms. One is common pretty much everywhere in the world and that we could call it euthanasia. A doctor administered a lethal medication intravenously, and a patient will die usually in 15 or 20 minutes. Sometimes the doctor steps away from the bed but is still present in the room. In countries like Canada and Belgium, where aid in dying is legal, that’s almost all deaths in the United States, it’s different. Patients have to self administer the drug, which in most cases means a patient drinks a lethal solution. That was a compromise that has roots in Oregon because there were so many critics of the Death with Dignity law who argued that patients would be coerced into death or forced into death and they imagined money-grubbing children pushing frail elderly parents into taking their lives early.

There was this idea that if the patient had to drink a lethal solution, physically lift a cup of  barbiturate to her lips, we could take this as a proof of her choice and that coercion would be less likely. It’s a uniquely American formulation, and there are a lot of problems that result from this. For starters, oral administration of drugs is just a lot less straightforward. So it was quite hard for doctors to figure out what drugs could be used. What drugs would work quickly and painlessly is important.

Sometimes these deaths can take a long time, especially if someone is near the end of their lives, their digestive systems may not be functioning completely. They may have constipation, and this can impact the way that the solutions are absorbed by the body.

In one famous case in Oregon, someone took 104 hours to die after consuming lethal drugs. You can contrast that with the 15 or 20 minutes that a lethal injection takes. Then look at all the people who can’t drink a cup of medication, because maybe they have tremors in their hands and they would spill a solution. Maybe they have ALS and they can’t lift their hands. They even have trouble sipping from a straw.

So we were seeing people be excluded for, to me, very insignificant reasons. Their rights were being denied to them because they couldn’t lift their hands. Some doctors have found a way around this. For instance, if a patient has a feeding tube, perhaps she can administer the drugs herself into her feeding tube, or a rectal catheter can be used and the patient can hit a plunger, which self administers the drugs. But to a lot of the doctors I spoke to, this is all kind of absurd.

The patient’s going to die. The patient has requested to die, and has filled out paperwork. Why are we asking her to do this physical act? When a doctor could just take care of things, so to speak, much more efficiently. If I can consent to a cardiac surgery without having to do the first incision myself...

Dave Miller: You start your book with a story of a man who fits Oregon’s and other state’s requirements for right to die laws in the U S, but then with each successive chapter, you basically make it more morally complicated. One of the people that you spent time with was a woman in England named Avril Henry. She said something really striking. People with a terminal illness are the lucky ones. I have longed for a diagnosis of cancer. Can you introduce us to April?

Katie Engelhart: She was a professor of art and art history in England. A brilliant eccentric woman who’d been educated at Oxford and Cambridge. She had a specialty in medieval iconography. She wrote academic papers, quite dry academic papers on Chaucer and rhythm and meter and poetry. She’d lived a very full life, a very happy life.

She got to a point in her 80′s where she felt like the balance between good and bad in life was tipping too far towards the bad where the daily struggles of being old were making her life unbearable. So she wasn’t dying of any particular thing, but she had this kind of accumulation of symptoms. Everything from hearing loss to neuropathy in her feet, which made it difficult to walk, to issues around incontinence. She was finding it hard to do the things she liked to do.

She wouldn’t have qualified under an Oregon-style death with dignity law. She wouldn’t have qualified to die in most countries that have assisted death on the books because she wasn’t dying of any one thing. But to her, life was unbearable and she made the decision to hasten her death.

Like several people I met in the course of reporting, this woman in her 80′s, who’d probably done nothing illegal in her life, learned how to set up an encrypted email address, how to navigate the dark web, and eventually purchase drugs from a dealer in Mexico who shipped barbiturates to her house. That explains the lengths that she was willing to go, and this fits into a broader movement, which has got a little bit more attention in the UK. This idea of old-age rational suicide. The idea that people who have reached a certain age, who were dealing with these constellations of symptoms should have the right to assisted dying. Just like someone who has terminal cancer.

Dave Miller: I think that’s the first time that you’ve used the word suicide in our conversations so far in the last 20 minutes. And it gets to just one of the many thorny issues here of the language. Assisted suicide used to be, decades ago, one of the phrases that people who are fighting for the kinds of laws that we’re talking about, that was common language then. That’s no longer the case. How do you decide, just as a journalist, as somebody who is talking about this with subjects, or with someone like me, how do you decide when to use that word?

Katie Engelhart: Yeah, language is tricky. As you said, physician-assisted suicide used to be the term that people use. Now it’s a bit of an indicator of political opposition. If you see an article where someone’s talking about physician-assisted suicide, it probably signals that they’re opposed to it.

Advocates have definitely worked hard in recent years to rid the debate of the S word, and their position is that for patients that choose this kind of physician-assisted death, it doesn’t feel to them like suicide. At least what we associate with the word suicide, which is an act committed out of despair or a product of mental illness. It feels like a different kind of considered choice. So physician-assisted death is a term that I like to use because I think it’s just very clear what it is. But a lot of advocates have started using the phrase death with dignity, which of course comes from the Oregon law.

I tend not to use it as a reporter because it feels sort of euphemistic to me, and because I think both sides have really fought over the word dignity, and both sides use it politically. I don’t find it that helpful. In the book, often I’m just following what language people use to describe their own choice. If someone describes it to me as a suicide, I’ll use the word suicide because that’s how they feel. Other people have distancing words like exit or a self deliverance, but certainly the issue of language is thorny.

Dave Miller: There’s another phrase that is a term of art here that is directly related to Avril Henry’s story. A phrase some proponents of assisted death for elderly people use is a completed life. What do they mean?

Katie Engelhart:  Avril, when she was researching around online, she came across some websites talking about this idea of a completed life. The idea is someone might, at a certain age, decide that they had lived a good life and they felt a kind of closure on the life that they knew and enjoyed, and that it was time to end it at this natural conclusion point. I found a lot of people try to write a narrative over their life. We want to have beginnings, middles, and ends. For some of the people I met, they felt like they had reached their natural end, even though their bodies weren’t there yet. They thought they should end their lives at that moment when it felt authentic and true to them.

Dave Miller: We do have to remind people now that if they want help, help is available. The National Suicide Prevention Lifeline provides free and confidential support, 24 hours a day, 7 days a week. The number is +1 800-273-8255. Or you can text the word home to 741741. Katie Engelhart, one of the arguments made against the broad movement that you’re talking about here, made by the bioethicist Ezekiel Emmanuel, is that the broad legalization of physician-assisted death and euthanasia could have the paradoxical effect of making patients seem to be responsible for their own suffering. What does he mean?

Katie Engelhart:  I thought his point was very compelling. He argues that  if we legalize this option to end suffering prematurely, it might kind of fall back and make patients who are living feel as though they are choosing to suffer because they are not choosing not to suffer, and in that way, would make patients responsible for the pain that they’re experiencing.

On the other hand, Emmanuel’s critics argue that it’s not necessarily any single person’s prerogative to limit choices that an individual might have, but it’s a very difficult question. Actually some of that is mirrored in some disability rights critiques of assisted dying laws. I spoke to a number of disability rights advocates and activists who argue that these laws will inevitably place pressure on people with disabilities because there will be this option to end life. They will feel that they are not choosing to relieve their families and loved ones of burdens for instance. Certainly there are people who argued that just the existence of the laws could be hurtful to two different groups. Hmm.

Dave Miller: Let’s turn to Western Europe now, which as I mentioned is at the Vanguard in terms of the legal right, to get help in taking your life. I was hoping you could describe the situation in a few different countries. Let’s start with Switzerland where people talk about suicide tourism what’s happening there.

Katie Engelhart: What’s unique about Switzerland’s aid in dying laws is that Switzerland has no residency requirements, which means that people can travel to the country, go through a fairly quick evaluation process there, then receive an assisted death at one of several clinics that are open to foreigners, around Zurich for instance, and locals have spoken of this suicide tourism trend.

We do see people traveling from places like Britain and elsewhere in Europe to Switzerland to die when their own countries don’t have legal physician-assisted death, but there are complications here too. First of all, it’s very expensive. It’s prohibitively expensive for most people to pack up and fly to Switzerland. Also there’s a question of legal liability. There was quite a lengthy legal battle in the UK, for instance, where a woman who wanted to go to Switzerland to die was trying to figure out would her husband, or could her husband, be prosecuted after her death as an accessory to her death, just for helping her onto the plane and bringing her to the clinic.

So that is an open question in a number of countries. Lastly, people that I spoke to, and doctors explained that, to book a plane ticket, to pack things, to get in a plane, to fly to Switzerland, and then to be interviewed by different doctors at different clinics, that requires a level of physical strength, a certain level of physical strength, and it would be practically impossible to do when you’re in your final days of natural life, you’d be too weak. You’d be too out of it in most cases. So what we see is when people want to travel to Switzerland, they end up going earlier than they might otherwise want to. They sometimes end up dying sooner than they would like to because they worry about waiting too long to get on the plane and missing their chance.

Dave Miller: Meanwhile, no country on earth, if I read you correctly, has normalized euthanasia as much as the Netherlands. Can you give us a sense for what’s happening there right now?

Katie Engelhart: It’s really the Netherlands and Belgium that are leading this and have the broadest laws. If we look at Belgium, for instance, assisted dying is open to children who are deemed to be mature minors, which means that in the estimation of their doctors, they understand what they’re asking for and are mature enough to make a request for death.

We’ve seen children, I believe as young as 12 in Belgium, use the law though. It’s very rare. In both countries, someone who is dealing with mental illness, who has mental illness but not physical illness, can qualify for the law. So something like intractable depression or severe OCD, in some cases, other diagnoses like trauma, have qualified people to die. In one reported case, someone who had an unsuccessful gender reassignment surgery was granted the right to die. Although the full details from that case, I think haven’t been made public. A range of mental anguish conditions can qualify someone.

I think the other thing that makes these countries unique is that in different ways, they open the laws to people who have dementia. In Belgium someone who is diagnosed with dementia can choose to end their life before the disease becomes more serious. After diagnosis, someone with mild dementia might decide in Belgium to end her life before it gets to a kind of moderate or severe stage, at which point she would lose the capacity to consent to her own death at the moment.

Netherlands goes even further on that point. Someone can fill out an advanced directive saying when my dementia gets so severe that say, I can’t speak, I can’t recognize my family, I can’t feed myself, I would like to be euthanized by a doctor. So these laws go much further than anything we see anywhere in the US.

Dave Miller: In terms of dementia, the doctors there, or the authorities, they actually honor the wishes of the earlier version of the person, and just assume that the current version of that person whose dementia has progressed  is no longer capable of overriding their earlier choice.

Katie Engelhart: Yeah it’s very complicated, and it’s very unpopular. What we’re seeing is that doctors in the Netherlands almost never carry out these requests for deaths, although sometimes they promise to, and you can imagine why. You can imagine a person with fairly severe dementia who on the day of her death is smiling, appears to be enjoying life, appears to be, in a different way obviously, but appears to be happy. And because of something she wrote down five years ago or a year ago, her doctor is expected to administer a lethal injection.

Philosophers, speak of a then self and a now self of dementia. So then self refers to the person when she had full cognitive capacity, when she could describe her life and describe her choices with clarity. The now self is the person with a more progressive disease, who is living in the moment, who has maybe lost some memory, who has lost a lot of cognitive skills. And there’s this debate about whose interests should be followed. Whose interests should be respected when it comes to assisted death. Is it the original version of the person that existed before her disease, who articulated very clearly when she wanted to die? Or is it the person who exists in the moment?

Because the earlier version of the self,  if she exists, she’s no longer accessible to anyone. So, yes, this is very complicated. In fact, Canada considered amending its aid and dying law to allow these kinds of advance requests of something debated by parliament for a long time. But ultimately it didn’t pass. I think in part, because of that complexity,

Dave Miller: You actually spent a lot of time with a woman in the U S who is grappling with this issue for herself, given that she was dealing with a progressive disease that was going to make dementia more and more an issue for her. What did you learn from talking with her?

Katie Engelhart: This is Debra with dementia that you’re talking about.

Dave Miller: Exactly.

Katie Engelhart: So I met this woman in Oregon named Debra Koosed and she had  a mild form of dementia. She was in the fairly early stages of the disease, although by her accounts, she was losing cognitive function quickly, and in a way that her doctors  couldn’t always measure, there’s no blood test for memory loss. She was finding that she was losing words, losing memories, losing some resilience. Her ability to deal with small stressors was kind of gone. Something like dropping a bottle of balsamic vinegar, and having to clean up after it became a kind of terrible trauma.

When I met Deborah, she had decided that she wanted to end her life before, in her words, she lost herself more to the disease. She really feared the idea of ending up in a nursing home, and particularly ending up in a nursing home a situation where she didn’t necessarily know what was happening and couldn’t advocate for herself.

She worried that she would suffer and that she wouldn’t understand her suffering or know what to do about it, or be able to stop it. Debra ended up connecting with an activist group in the United States that helps people to plan and carry out their deaths. She did end up taking her life several months after we met. I was in close contact with her and spent time with her in Oregon, as she was really planning when she wanted to die. Again, there was this very difficult issue of timing. She really felt like she didn’t want to lose herself, and because of the nature of dementia, she didn’t know when she was going to lose certain things.

But with dementia, there are good days and bad days. At some point, the bad days overtake the good days, then it’s just one bad day. She didn’t know when that time would come so she wanted to die, but on the other hand, she wanted to live, she enjoyed life. So there was this terrible tension when she had to decide on the day and she ended up dying a few months after we first connected.

Dave Miller: I want to return to mental illness, which is as complicated a moral issue as any that you wrote about, and you wrote about a number of them. You mentioned Belgium’s expansive view of legalized aid and dying for people with various mental illnesses. You spent a lot of time with a young man in Canada who suffered from serious and debilitating mental illness and was very public about his plan to end his life. His parents were very divided about what he planned to do in a way that I think illustrates the divide here. Can you describe their different points of view?

Katie Engelhart: I spent some time with a man in Canada named Adam Maier-Clayton. He was in his mid twenties when we first met and he described to me a long history of mental illness. He’d had obsessive compulsive disorder since he was a child, and a lot of anxiety and depression, which for him was manifesting as physical pain. He described burning, he felt like there was acid on his eyeballs that would make it hard for him to see. He described not being able to move on some days because his physical pain was so great. He tried certain treatments and ultimately he got tapped into the right to die movement in Canada. He came to believe that people with mental illness should have the right to die just as people with physical illness do because, as he pointed out, mental illness is just as real as physical illness and can be just as serious and just as painful.

Adam’s mother was fairly opposed to her son’s plans. She thought there were more things that he could try, more treatment options, more holistic naturopathic treatment options included. Adam’s father took the opposite view. He was living with his son and he came to believe that his son was just suffering so much, and so hopelessly that his wish to die made sense, and that as a father, he should respect it and support it as best as he could. So Adam would talk in fairly concrete ways about his death plans and his father would listen rather than try to stop him.

I think Adam kind of played into his story, which is covered by the Canadian press, did play into this broader debate in Canada, but whether to expand the law to include people with mental illness. On the one hand, you have critics who say, by definition, someone with depression is experiencing hopelessness or despair. So if we help someone in that position to die, we’re basically collaborating in their suicidal ideation, and this is a gross injustice and abuse of medical authority.

They argue that there are a lot of cases with mental illnesses. There are just a lot of different medications and different therapeutic programs that could work, but that take time to be tested and ruled out and that, instead of helping people to die, we should be improving mental health care. On the other hand, you have proponents who argue that, yes, there’s always another treatment to try, but we can’t force someone to try everything.

We don’t force people who have cancer to try every available treatment. We can’t make them. So we should treat people who have mental illness with the same respect and grant them the same autonomy. Canada has changed its law so that in about a year, the law will be open to people who are mentally ill, but not physically.

Dave Miller: I want to remind people again, the National Suicide Prevention Lifeline provides free and confidential support 24 hours a day, 7 days a week. The number is +1 800-273-8255. You can also text the word home to 741741. I’m curious about your process throughout these many years now. Do you have a rough count for the number of people that you talk to, either briefly or in terms of extended relationships, reporting relationships, who planned to take their own lives?

Katie Engelhart: It was a lot, but a much smaller number that were in the process of actively working to find a way to end their lives. But yeah, the process felt impossible and was very sort of tortured for me. I didn’t feel like I had models to fall back on. So when we’re looking at other kinds of reporting, I think of things like reporting on sexual abuse, child sexual trauma, for instance, there are professional organizations that have put out guidance or psychologists who have recommend things to journalists, language, to use, approaches to take, and journalists can use that. They’re often really helpful, these professional guides. I didn’t feel like I had that. I had to make up the process and the ethical code as I went.

Dave Miller: Can you describe the code that you came up with then?

Katie Engelhart: In several situations I did have people tell me that they had the intention to take their lives sometimes in very concrete ways. I’m going to take my life here with this drug or instrument and this’ll be the setting. So I knew in very concrete terms and I didn’t intervene and I didn’t try to stop them.

There were a few different rules that I made up for myself. Number one, I was very careful who I spoke to. Some of that was just a hunch, an instinct. If an interview didn’t feel right, I wouldn’t continue speaking with the person. If the person felt, I’m not a professional, but if the person felt unstable to me, I might not continue with that interview. Also I didn’t want to feel like I was operating in the shadows of someone’s life. So I really only carried out sustained conversations with people who introduced me to other people in their lives.

We were just talking about Adam Maier-Clayton, this man in his mid twenties. I spoke to Adam’s parents at length. I spoke to his friends, his psychologist, his psychiatrist, and a former colleague. I felt like I was being very transparent to those around him about what I was doing. Also implicitly, I was giving them the opportunity to tell me to stop this. What you’re doing is wrong and give me a warning if they thought that I was making things worse in some ways. But I was also careful in how I communicated with people. So this is honest, but I would tell people all the time, I’m not writing a book about people who are going to end their lives. I’m writing a book about people who are considering it.  I have no stake in how your story turns out and you don’t owe me any kind of conclusion. I’m just interested in the process of you thinking about this.

I tell people that they didn’t have any obligation to me because I didn’t want them to feel obliged to be part of my story. So I said very clearly, probably to annoying length, if you want to stop speaking to me at any time you can. You can just let me know. You don’t want to talk again, or if you want to do that, you can just stop returning my calls and some people did. I would just let them go. But yeah, I had a lot of anxiety, both legal and just ethical about the role that I was playing just by being there. Every journalist knows that, just being in the moment impacts the scene somehow, even if you’re trying to be quiet in the corner and a fly on the wall. I thought a lot about how my presence in someone’s life could impact their trajectory.

Dave Miller: You mentioned that in some cases, people told you about the means and place and time of their intended deaths. You made the decision to not stop them. How did you make that decision?

Katie Engelhart: Well I guess it came from believing what they told me, which was what they were doing wasn’t suicide. Most suicides are despair suicide. So again, there are suicides that come out of despair, mental illness, and they told me that this was different. They didn’t think that what they were doing with suicide. It was more, they were reacting to their circumstances and they were choosing to hasten their deaths for rational reasons. So in part I was believing them. I believed that what they were doing was different, and so I reacted differently.

But also, in certain cases in this book, I wasn’t the only one who knew. By the time Adam Maier-Clayton died, his parents knew, the police knew, he had written a lot of stuff on social media about his plans, he had friends that knew, he told his doctors, he told the psychiatrist what he planned to do. All of us just, there was nothing really for any of us to do, except for wait and see if he did end up taking his life, which he did.

Dave Miller:  Yes. It’s fascinating hearing you describe all of this, because one of the things that you reported on is physicians describing themselves or effectively being gatekeepers and having to being put in this position where it was up to them to decide, as you said, if somebody is stable or not, if they can be trusted, if their expressed wishes should be trusted in a sense, that’s exactly the position that you found yourself in.

Katie Engelhart: Yeah, I think I had to, and I didn’t think there was any other choice for me. I’m not any kind of healthcare advisor or healthcare worker or mental health care worker. I’m only an observer to what people tell me. Now I did push back sometimes, not in a serious way, not in a way that was designed to change the outcome of the story, but I did have questions.

For instance, with this woman Debra Koosed in Oregon who had dementia, I remember asking her at some point, she was describing all the reasons she wanted to die. I said, well, would you stay alive if you had more money to hire a caregiver, or you had children who could come to Oregon and take care of you. I was coming up with, like proposing, things that I thought would make her want to live. I remember her just giving me this look, and she said, “Yeah maybe, if I did, but I don’t, I don’t have those things.”. This is just the reality that she was living, and it wasn’t anything that I could fix.

Dave Miller:  Thanks very much for joining us today.

Katie Engelhart: Thank you so much for having me.

Dave Miller:  Katie Engelhart is a journalist and the author of the book, The Inevitable: Dispatches on the Right to Die. If you don’t wanna miss any of our shows, you can listen on the NPR One app, on Apple podcasts, or wherever you get your podcasts. There’s also our nightly rebroadcast that is every Monday through Friday at 8:00 PM. Thanks very much for tuning in to Think Out Loud on OPB and KLCC today. I’m Dave Miller. We’ll be back tomorrow.

Contact “Think Out Loud®”

If you’d like to comment on any of the topics in this show, or suggest a topic of your own, please get in touch with us on Facebook or Twitter, send an email to thinkoutloud@opb.org, or you can leave a voicemail for us at 503-293-1983. The call-in phone number during the noon hour is 888-665-5865.