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

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

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

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

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

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

Interview Highlights

On who qualifies for physician-assisted death

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

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

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

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

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

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

On the "euthanasia underground"

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

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

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

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

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

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

On the "suicide tourism" in Switzerland

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

On the ethical issues Engelhart grappled with while researching her book

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

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

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

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