The Doctor Who Helped Me Understand My Mom’s Choice to Die

Earlier this year, my mother ended her life via medical aid in dying, also known as MAID. She had A.L.S., so she was suffering in many ways, and her choice to die in this manner felt right. Probably because it felt that way, in the time leading up to her death I didn’t have many unanswered questions about MAID. I knew it was legal nationwide in Canada, where I’m from and where my mom lived. (There it’s called medical assistance in dying, and unlike in the United States, patients can apply for it when their disease is nonterminal, as long as they have a “grievous and irremediable medical condition.”) I was also aware that in the United States MAID was legal in only 10 states and the District of Columbia. That’s pretty much what I knew, and that was enough.

That is, until a fellow journalist friend of mine sent me an article about Ellen Wiebe, a MAID provider in British Columbia. The friend suggested that Wiebe might make a good interview subject for me. It was an astute (and somewhat provocative) idea. Wiebe, who is 72 and has also been a longtime abortion provider, has performed hundreds of MAID procedures and is one of Canada’s most prominent advocates for the practice. As I looked into her more, I realized that, actually, I did have questions — medical, legal and philosophical — about when doctors help people to die, and also about how MAID might shape our thinking on what, exactly, constitutes a good death.

Dr. Wiebe, I want to tell you upfront: My mom died from MAID in June in Ontario. That’s part of why I’m talking to you today. Also, I apologize in advance if I get emotional during this conversation. There’s no easy way to say goodbye to your mother.

I assume that plenty of doctors support MAID, but I don’t know how many would want to be MAID providers. What distinguishes you from other doctors? Well, human rights has been a major focus of my life. My other practice is abortion, and again, it has to do with people’s rights over their own lives, their own bodies. I feel honored that people trust me to help them through these difficult things that they’re going through and that I can hand them that autonomy that they’ve lost.

As you’re aware, there are all sorts of different criticisms around medical assistance in dying. There’s the slippery slope argument: If we allow people to do this — everybody’s going to want to die.

I think the concern is that more people might feel compelled who otherwise wouldn’t choose to die. That’s the concern, and I was being flippant there, but basically, people want to live unless their life is unbearable.

Another concern could be religious: that MAID devalues the sanctity of life. Another would be that people might end up choosing it for financial reasons or because they’re pressured into it. There’s a long list. Do any of the arguments against MAID hold water for you? It is our job as clinicians who assess people for MAID to determine some of these issues you’ve just brought up. For example, I met a man in a residential hospice, and he was late-stage, confined to bed, and he said, The reason I want MAID is because I don’t want to be a burden to my family. Sorry, that’s not a good enough reason. But of course, he also was very distressed at the fact that he had been a person who’d taken care of his family and now he could have people take care of him, and it was unbearable to him that he was in that state and wasn’t getting better. So I had to determine that his suffering also included that, and not merely that he was doing it to protect his family from having to come to the hospice to see him.

What determination did you make in that instance? Oh, he was most definitely eligible.

In 2027 in Canada, people will be able to access MAID for psychological reasons. In other countries, there’s been broader discussion about MAID and early dementia: people saying, I want to go before the disease gets too far. Or in the Netherlands, they’ve talked about MAID and what they call “completed lives”: when an elderly person has reached a point where they say, “I’ve lived my life.” It’s not that they’re ill or depressed or suffering; they just feel as if their life is done. I want to know where you think, societally, the line should be for someone to access MAID. I don’t have the answer. Again, I come from human rights. People should have control over their own lives, and they should be able to have help at the end if they so desire. But there’s the situation of a quadriplegic: Generally it’s young men who do risky things who become quadriplegic, and they are horrified at the idea that they’re going to live totally dependent for the rest of their lives and want to die early. Then years later maybe they’ve got a university degree, a career, family, and they love life and feel that it would have been terrible if they had the choice to die early because they would have taken it. That’s a problem. How long should you force somebody to put up with quadriplegia before they can make the decision that that’s not an acceptable life? There isn’t an answer.

Have you ever helped someone with MAID and then regretted it? No. I don’t agree with all of my patients’ choices. Sometimes I struggle when I see a young, beautiful person choosing to leave earlier than they needed to. Because it’s hard, especially on their parents. But I believe strongly in basic human rights. If that person says that they can’t live with this condition, then once we’ve gone through the whole process, I will honor their wishes.

I want to ask some questions that come out of my mom’s experience. She had A.L.S., she was 70 years old, she was suffering physically and mentally. There’s no doubt in my mind that MAID was the right thing for her, and yet it has raised questions for me. In Ontario, one of the steps in the process is that you have two independent assessments from a doctor or a nurse practitioner who helps determine whether a patient is eligible for MAID. I was at one of those assessments. I’m sitting in a room listening to a conversation between my mom and a doctor who has never met my mom before and is trying to assess her material, physical and psychological situation. I don’t think anyone was dishonest or negligent, but I thought, What does this doctor really know? Something seemed totally insufficient in determining what my mom actually thought and felt and also like an example of medical hubris. Like, why would this doctor think she can understand the fullness of this situation based on a one-hour call? The whole thing felt a little bit like a charade. Isn’t it? Interesting. First of all, the clinician who assessed your mother reviewed her medical history, and it was extensive, I’m sure. So there was not only a description of the diagnosis of A.L.S. but also her deterioration over time and her reaction to that, her reaction to the medications that were given to alleviate her suffering. The doctor had a lot more information than what she got from that one hour. Secondly, our job during those assessments is to make sure that the person understands their condition. Remember, some of the A.L.S. patients we assess can’t talk. But your mother was still verbal, right?

Yeah. So being able to understand that she understood her condition, that she understood her options — that probably wasn’t very difficult for the assessor. That was the basic thing that we want, because we have eligibility criteria that we have to go through. There are the easy ones: over 18, eligible for Canadian medical insurance. The more complex ones are capacity to make decisions, and the understanding. That is the main thing that we are assessing: Do they understand this decision?

I was wrestling with what I thought were the epistemological problems of MAID assessment, but your point is, it’s not the assessor’s job to know what my mom is thinking? Your mother had rights.

MAID applicants have to be of sound mind. You have to determine that they’re being rational. My mom was physically suffering but also depressed. Depression, as I understand it, is a mood disorder. How can we say with certainty that someone experiencing a disordered mood or state of mind is making a rational choice? Exactly. This is something that we have to work on. Many of my patients who are dying, they’re losing so much. Often, like your mother, they have one loss after another, and that’s really depressing. So how do you figure out whether they have a mood disorder that disorders their thinking so they can’t think clearly about making a logical decision? When people are clinically depressed, they tend to believe that they are bad people, that the world’s a bad place, that it’s their fault that things are going wrong. That is disordered thinking that might respond to therapy, even in a dying person who’s suffering physically. But if a person like your mother says, I’m losing everything, the things that used to give me joy, I can’t do anymore, what’s the point in going on just to get worse — that’s pretty logical. She’s recognizing the truth of the situation.

I’m curious about the subject of MAID and grief. These are the parts I’m going to have a hard time getting through. So, five years ago my best friend died from suicide — not medically assisted. That was a complete surprise to me. Totally out of the blue. I’m so sorry.

It felt like a rupture that still has not closed five years later. The closest I’ve gotten is accepting that it’s just always going to be a painful question mark. But with my mom, I don’t have any feelings of rupture. My hunch is that MAID had a lot to do with that. It was her choice, we knew when she was going to die, we had time to spend with her, I asked her everything I needed to ask and said everything I needed to say. I think, as a result, I felt prepared for my mom’s dying. Do you have any sense of the connection between MAID and grief? Yes. We need to know more, but there are clear differences between grieving after MAID versus grieving from sudden deaths like your friend’s or expected but natural deaths. For a lot of people, the planning for an assisted death allows people to do exactly what you said: say the things that need to be said, ask the questions that need to be asked. People say that it makes it easier. The harder thing for some people is that this person left earlier than they needed to. That can feel like abandonment and rejection in a way that is hard on the survivors. In terms of suicide versus MAID, you described it beautifully. The suddenness of a suicide, the violence, the fact that they have to do it alone and not have anybody with them, that it is unsanctioned, police have to be involved, makes it all more difficult on the survivors.

I want to pull back. One of the fears around MAID has to do with the idea of coercion: people feeling forced into it because they don’t want to be a burden or don’t feel as if they can get proper care to alleviate their suffering. How would a MAID assessor make determinations in those kinds of examples? Because I don’t know if somebody’s going to say, “I’m being pressured into this,” or “I don’t have the money to get more care.” My first year, I had two patients around the same time who both had progressive neurological diseases. One of them was rich in every way. She had not only a beautiful home and money, but she had a loving husband and children and friends. She needed full care, and she had her staff who did her caregiving. The man, on the other hand, lived in a horrible housing situation, and he was poor in every way. He had no money. He had caregivers whom he fought with all the time. And I thought, OK, if this guy got a million dollars and was able to afford staff and a home, would he want to live longer? They said the same things to me: The woman who was surrounded by this loving family and had this beautiful home said, All I can do is get put into my recliner and sit there all day and then get put into bed and lie there all night. That’s not good enough. The man said, Life isn’t good enough when all I can do is get put into a chair and sit there and then get put into bed and lie there. That’s not life.

But you feel you’re able to determine whether people are being fully honest with you? Hey, people can lie. I can be duped. But I still have to go through my entire checklist, and I have to know that they truly have the grievous and irremediable medical condition, that they do understand their condition and its prognosis and the treatments and the alternatives. I explore the suffering. I don’t just accept when people say the pain’s too bad.

Have you ever experienced situations where the family was unhappy with the MAID decision? Oh, yes.

What were the ripples from that? Anger, of course. I remember one family: The wife and brother were with my patient. He was only in his 40s, but he was at the end stage of a horrible cancer death and suffering dreadfully. His brother says to my patient, “You’ve got to tell Mum.” He said, “I’m not telling Mum.” “Well, I’m not telling Mum.” “You’ve got to tell Mum.” We’re dealing with complex family dynamics sometimes.

Another thing that I was thinking about with the experience with my mom was why doctors were involved in the decision at all. If we accept that people have a right to bodily autonomy, why did my mom have to go to a doctor and say, Let me do this? Isn’t there something paternalistic about that? Maternalistic.

But why are doctors involved? I think it’s reasonable that our country decided to use doctors as the gatekeepers. It’s not perfect. It’s not necessarily even a full human right, but in general, our country trusts doctors to make decisions on the basis of patients’ rights and the good of the patient, and so we are the trusted gatekeepers. Another country, like Australia, gives it to a committee with an ethicist and lawyer and doctors and so on who actually make the decision. That is another way of doing it.

Why do you think it’s reasonable that in Canada doctors are the arbiters? We help make assisted dying more accessible to patients than the Australian system, where it takes many weeks to get through that complex process. It’s hard for people who are acutely ill and interferes a lot with access. So [in Canada] access is better, and we’re not a faceless committee. We are people with faces and empathy.

The doctor who helped my mom to die, she asked my mom if everything was clear or if there were any questions, and my mom, she was so brave, she just said, “Let’s do it.” That’s my mom. Then after the drugs were injected and my mom was nonverbal, the doctor, in a very caring way, softly under her breath, looking at my mom, said, “She’s so in control.” Which was what I wanted to hear. But I also don’t fully know what the doctor meant when she said that. When you are in that situation, do you feel as if you’re seeing things in the nonverbal patient or understanding something about what they’re going through? Remember, the drugs that we give in Canada are general anesthetic. Most people have had an experience with a general anesthetic, so they know what it’s like. We start with a sedative, so you feel kind of sleepy and maybe a bit woozy, and then you’re asleep. Then you’re in a deep coma, and you know nothing. We know that in that process of going into coma, hearing is the last thing to go, and so a lot of us will tell the loved ones around the bed, “She can still hear you,” and they’ll say their last I love yous and that sort of thing. But our method makes it very quick, as you noticed. It’s only minutes.

Do you think anything happens after people die? No. I talk about this with all my patients: ask them what they think so I know whether they’re expecting an afterlife. But, no, I don’t personally expect an afterlife. We know that most MAID providers and most MAID recipients tend to be not very spiritual.

Why do you think that is? Part of the entire attitude toward having control of your life. The kind of people who aren’t religious, are well educated, etc., are more likely to choose MAID. Whereas highly religious people are less likely to.

A doctor I was talking to told me an anecdote about a palliative-care physician who said you should stop when the decisions you make don’t bother you anymore. You seem so comfortable and at ease with your work. Is it the kind of thing a doctor can get too comfortable with? Remember, we’re doctors, so we’re used to tragedies, we’re used to being in other people’s crises. In order to do this, you have to be able to protect yourself. You learn that in medical school: how to set boundaries and not take home other people’s tragedies and make them your own. It’s different for every person how they take that. I spent 20 years working in the sexual-assault service here in Vancouver, and that meant I was spending time with women who had been assaulted and traumatized in a terrible way. I was able to do that without taking on a lot of secondary trauma. A whole lot of people can’t. One of my friends joined the service briefly and said, I can’t get back into bed with my husband after I’ve come away from a sexual-assault case; I’d better quit. So you have to know yourself. But if you set boundaries so strongly that you no longer have empathy, then you’ve gone too far.

I want to know more about the connection between your work as an abortion provider and your MAID work. You’re dealing with patients at such different phases of life. What is the emotional interplay for you? I’m dealing with young women in the morning who are planning their lives around having children, not having children, having choices over what they want to do. And then in the afternoon, I might be seeing somebody who’s planning their death. It’s a wonderful balance. The social constructs are very interesting because in Canada and the U.S., the majority of people believe that women should have the right to control their bodies and people should be able to control their deaths. Yet there’s still a lot of stigma, there’s difficulty with access for both, and with finding enough providers, finding spaces. And you know, I’ve had lots of anti-abortion people against me and now anti-MAID people against me. So there are quite a few similarities.

Do opponents of abortion and MAID demonize the work in similar ways? I must say that the anti-abortion people are worse. They shoot and stab my colleagues and threaten me with death. Whereas the anti-MAID protesters are more likely to pray for me. They are less violent, which is good, but their rhetoric is similar. I’m, of course, called a serial murderer.

Around 2000 or so, there was an abortion provider colleague of yours in Vancouver who was shot? And stabbed. Same colleague. He was having breakfast, and someone shot him through the window and hit his groin. He almost died of blood loss and had to have a number of surgeries and did recover and go back to work. Then, a few years later, someone stabbed him at work.

Did that give you pause about doing the work you do? Yeah. I had young children, and I had to look into myself and decide, If I’m going to be anxious all the time, that’s not a good thing. But my anxiety dropped, and I was able to continue. Now there’s much less violence against abortion providers. There was a time when I was wearing a bulletproof vest to work every day.

Did those feelings of anxiety just ebb over time? Or did you acclimate to a higher level of anxiety? It just went away. I’m not an anxious person.

There are all kinds of doctors who don’t often deal with tragedy. I wonder if you have a perception of what medicine is fundamentally about that maybe is not shared by all doctors. Well, not all doctors want to do palliative care even though most specialties have people dying. What I couldn’t tolerate, and was so grateful I didn’t have to deal with hardly ever, was dying children. I really admired the pediatricians who could work with very seriously ill children and dying children because that one just freaked me out. So we all have our limitations.

Yeah. You know, my mom’s death and the bravery that she showed made me realize there’s so much BS in my life that I need to be braver about. If she can be brave about that, then I need to be braver. That’s something I’m now carrying that I wasn’t before. So for you, has experience with death taught you about what makes a good life? Oh, yes. My patients teach me so much about that, and at my age I’ve lost loved ones. That helps to make you realize what’s important in life. We just had a Canadian Thanksgiving, and I saw all my kids. These are the important things. Spending time with friends and being with patients. I mean, I feel like everything I do should be worthwhile or fun — preferably both.

[In the weeks following my conversation with Wiebe, a judge in British Columbia issued a rare temporary injunction preventing the medically assisted death of a 53-year-old woman who had been approved by Wiebe for MAID. This was in response to a civil claim by the woman’s partner that Wiebe had wrongly approved the procedure because the patient’s condition was mental, not physical. The case is still pending. When I reached out to Wiebe about it, she declined to comment.]

This interview has been edited and condensed from two conversations. Listen to and follow “The Interview” on Apple Podcasts, Spotify, YouTube, iHeartRadio, Amazon Music or the New York Times Audio app.

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