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When you have a dog or cat that hurts at the end of life, you have the opportunity to lower your beloved pet. Some people who fear losing their function – mental or physical – would like a similar opportunity to end their own lives in a safe, peaceful and legal way.
Journalist Katie Engelhart explores the “right to die” movement in her new book, Inevitably. Engelhart says that individuals seeking death on their own terms sometimes resort to ordering lethal veterinary drugs from Mexico or China.
“When I started reporting on the book, I kept hearing this phrase over and over again …‘ I’d rather die like a dog, ’” Engelhart says. “A lot of people have told me about the euthanasia of beloved pets in their past. They talked about it [euthanizing their pets] as 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 physicians and four patients – who represent different aspects of the medical death debate. He notes that in the United States, death or medical assistance in dying is legal in only a few states and in Washington – and there are strict measures governing the qualification of patients. 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 this is not necessarily the case.
“Most people who choose to end their lives at a pre-planned time are more concerned with things like dignity … autonomy,” she says. “They’re less worried about physical pain than losing themselves, though that doesn’t mean pain doesn’t go into the equation.”
We single out from the interview
About who qualifies for death with the help of a doctor
The law [on who qualifies] is very strict in the United States. … According to two doctors, a person must be terminally ill within six months of natural death. Prognosis is a kind of obscure science, but two doctors must agree that six months or less is a reasonable time frame. And a person must have the mental ability to make a decision. If in doubt, the patient is usually referred for a psychiatric evaluation.
This is very different from the law as they look elsewhere. …
Death with the help of a doctor is legal throughout [Canada] and the criteria are looser. So instead of having a difficult time frame of six months or less, patients must suffer “unbearably and irreversibly,” and their deaths must be reasonably predictable, which some doctors interpret as 10 or even 20 years away. … So that opens the law to patients who, say, have multiple sclerosis, who have been on a predictable physical slope, but who are unlikely to die in the short term. In fact, the Canadian government is now considering several amendments to the law, which would open it for people who are mentally ill but not physically suffering, and for people who have dementia. And there are several countries in Europe that already allow euthanasia for both of these conditions.
About how states that allow medically assisted death do not give specific guidelines on which drugs to use
In some cases, we invent veterinary drugs specifically to kill pets, [but] we don’t design drugs to kill people. We design medications to relieve pain or to calm down. And in fact, although doctor-assisted death is legal in many states, the laws do not specify exactly which drugs should be used and which combination and which timeline – it is up to doctors to decide and resolve this.
So the doctors actually came up with a kind of cocktail of respiratory and heart medications that will work at the end of life. The time will vary from 20 minutes to several hours, depending on the patient and her condition. But [figuring out the doses and timing in those situations is] in fact a much more difficult process than I think many people could imagine. And again, these are specific to the United States. In most countries where help with dying is legal, people choose to die with an injection given to them by a doctor. And it’s quick and pretty easy.
At “underground euthanasia”
The more I researched, the more I realized that people are organized outside the law, in some cases in family units, and in some cases through fairly organized groups dedicated to guiding people through the dying process. This really surprised me in reporting, but I don’t think it should have. I am very disgusted to compare the movement to abortion, but there is one relevant point of comparison here. We know groups like Jane Collective existed before Roe v. Wade — provided safe access to abortion before it was legal. And there are large and small groups that ultimately make up the end of life. … I probably should have expected people to find a way when they felt abandoned by law and medicine. So I ended up profiling myself through those groups. Some are quite informal – we’re talking more about sites that refer people to different ways of procuring deadly drugs – and some are very organized.
At risk of prosecution if a friend or family member helps someone end their own life
I think there is a concern that an accomplice or an assistant might somehow force a person to die, that this could turn into some kind of murder or homicide. But it certainly puts people in a difficult situation. I have met many men and women who have worked hard to procure medicines or materials to help them end their lives and have been forced to do so on their own without the knowledge of their loved ones because they cared so much for their loved ones who were prosecuted after the fact.
In fact, some of the “euthanasia underground” groups I’ve profiled in my book offer fairly detailed guidance to families trying to help their loved ones in some covert way. So he will say something like: After your loved one has finished his life, make sure you go to the store, go shopping, take the bill with the time stamp, bring it home, have an alibi. I think that in many situations it can be sad for many families because people want to be there for their loved ones. It is a difficult idea that their parents will die alone and in fear because they are worried about future prosecutions.
About the complications faced by patients with dementia in planning a doctor-assisted death (which is not allowed for people with dementia in the U.S.)
For anyone who has been close to dementia, it’s not like there’s an on / off switch you can see. 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 bad forever. In the Netherlands, the law actually goes further. So a person can say when they are diagnosed, “I want to be euthanized when I reach the X, Y, Z moment, say, when I no longer recognize my husband or when I lose the ability to speak and eat.” But even these cases are very difficult. And doctors are often reluctant to creep into them, because what that death might actually mean is that the patient can smile, and the patient can look happy on the day of his or her death. And doctors are still being asked to euthanize because of what she potentially stated months and years earlier.
About “suicide tourism” in Switzerland
Switzerland has fairly liberal dying laws and, oddly enough, they are open to non-residents. Thus, several clinics were formed that serve visitors from abroad who want to come and end their lives there. The Swiss even talk about “suicide tourism” in that country. And these clinics demand that patients suffer unbearably, that they are sick because of something that will at some point reasonably end their lives soon. So anyone [from any country] they can qualify to leave. But again, I find that people end up traveling to Switzerland and die before they really want to, because they have to be healthy enough to get on a plane to travel around Zurich or Bern and complete the final approval process.
Engelhart tackled ethical issues by researching her book
I was very careful who I was talking to, and some of it was just born out of an instinct for self-preservation. I didn’t want to have a problem. I didn’t want to be in a situation to talk to someone I basically didn’t think was stable. So in almost any case, I would only talk to someone at length if I could talk to their loved ones, their family, friends, colleagues, clinicians, therapists – if I had access to their medical records. So I really didn’t want to feel like I was talking to someone in some kind of ambiguity. I wanted people around them to know I was there. And that, of course, would open up an opportunity for someone from that person to say to me, “This is a bad idea” or “I think you’re making things worse.”
And then I was also very careful when interacting with people. So I said extensively, probably excessively, something like, “I appreciate you talking to me, but just because we’re having this conversation doesn’t mean we have to have more. You can choose to stop talking to me at any time and that’s okay. You can.” let me know if you don’t want to continue talking or if you’re too embarrassed, you can simply ignore my calls and emails and I’ll get the point and leave you alone. “ So I definitely left that option open. And in a few cases, people took it. I was very aware that I didn’t want anyone to die for the story, and certainly not for my story.
Amy Salit and Seth Kelley produced and edited the sound of this interview. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the web.