What the Dutch experience with assisted dying can teach Canada

Dr. Gerrit Kimsma is a professor of medical ethics and a physician in the Netherlands, where he has helped patients to die for over 30 years. On Oct. 14, he is speaking at a conference on medical assistance in dying at the University of Ottawa. Maclean’s spoke to Dr. Kimsma about what he’s learned by helping patients to end their lives, and what Canada might draw from the long history of assisted death in the Netherlands.

Q: What is your experience with assisted death, as a physician?

A: I’m a physician and philosopher—I studied both. End-of-life issues and end-of-life care were central all through my medical studies. So I was very much aware of the choices, and early in my professional thinking, I came to the conclusion that it should be acceptable to help people die if their suffering would become so enormous.

My first case was from 1977. That was actually not even one of my own patients, but as a family physician, I took care of that patient because my colleague was on vacation. It was an elderly lady with cancer of the brain, and she was really suffering: you saw her body language and when you listened to her. Medication compared to what we do today was inadequate also. The family asked me to help her die because they were desperate. So after conferral with my colleagues, I decided that it would be the only decent thing to do. I used all the correct medications and I helped her die.

MORE: What we’re not talking about in the assisted-dying debate

Q: What was that experience like for you emotionally and philosophically?

A: Philosophically, I felt justified and relieved, but emotionally, it was very shocking. At that time I was a young physician, and there was no follow-up—there was little support. I could talk about it in my practice group, but not all of them had had the same experience. I was questioning whether this was the right thing to do as a physician, because I’ve taught my students always that healing is the goal. But I’ve concluded that healing may imply also that you help someone die at the moment of his choice, and that has become my guiding line.

Q: Can you provide a snapshot of how assisted death works in the Netherlands?

A: There have been regulations and accepted practice before we even had a law. The regulations go back to the 1980s, when the Dutch medical society came out in favour of euthanasia and assisted suicide. And from that time on, the regulations and procedures have been developed inside the profession, even though at the time they were not law-based, they were case-based. The court cases we had prescribed under what conditions physicians could end a life. The conditions are there should be a request that is voluntary and well-considered, there should be suffering that is hopeless and unbearable, without a chance for recovery, the patient should be fully informed, there should be a consultation with an independent physician, and that, in the final end, the intervention, the ending of life, is carried out with due care by prescribed means and the given dosages.

Q: You talked about the anxiety and emotional burden of that first patient you helped to die. Now that you’ve had much more experience, has that experience evolved for you?

A: That same anxiety is revived every time, but it’s mitigated. But it’s still there. There is some anxiety because you want to do the right thing, and you know that what you’re doing is at the limit of what can be asked from you, because you’re taking a life. That tension—that you’re taking a life—is within the context of doing a good thing for a patient, of doing what a patient really wants. That tension creates anxiety when one thinks about it: it’s not over when you go home. Sometimes you wake up thinking about it, when you have set a date and a time when it will happen. So it’s still there, and in my opinion it’s a good thing, because if it’s routine, it will be superficial, and if it’s superficial, it will run the risk of losing the commitment and the compassion that should go into it.

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Q: I imagine it must be an incredibly intimate relationship between the patient and physician.

A: One of my first patients made it clear to me himself. He was about to die, let’s say in half a year after the diagnosis of colon cancer. He came to my office and expressly said, “I want to talk to you about our relationship. I would like our relationship to change, to become a better relationship and to be more personal, because that is what I need.” And I discovered that I had that need also.

You actually need to have a better relationship, a more personal relationship, in order to be able to make the correct assessment of the suffering of the patient. But you need it also in order to be able to get in return the feeling that the patient really wants what you can provide, and it will be in a moral sense a shared decision that you and your patient make. That’s a very unique situation. I’ve coined it with the term of “medical friendship.” If you do something for someone else that is not in your own interest, but only in the interest of the other person, that is one of the Aristotelian forms of friendship, so I call it medical friendship.

Q: Have you had situations where you did not agree with the patient’s assessment? How do you deal with that?

A: I have had those situations, yes. But I’ve been surprised, let me say, by patients asking and stating that they want an end to their life while I thought that they could have gone to live a bit longer. And then when we talked about, they convinced me that I had to correct my decision and I had to give it to their demands. I’ve never had the feeling that I was pressured into it, so to say, but that was a learning experience for me too.

Q: In terms of your own emotional state, have you developed tactics to cope in the days and hours before and after you help a patient end their life? How would you advise Canadian doctors thinking about this?

A: I use my home base: my family, my wife. I have sometimes used my colleagues to discuss it. People know about it, and afterwards, we discuss it: sometimes more extensively, sometimes not as extensive.

But most of the time, I talk with the family (of the patient) afterwards. We make home calls in the days after it has happened, because families need the interaction also. They want to communicate with the physician who ended life. So it’s not a one-time intervention, but it’s part of a process.

RELATED: Assisted death is the new pro-choice

Q: Do you have an estimate of the number of people you have helped to die over the years?

A: I do have estimates, but I’ve started refusing to give the numbers because it’s not a numbers game. I’ve been lucky enough not to have that many patients to ask me, in comparison to other physicians. That’s just what my practice was, and in recent years, there has been an increase because 60, 70 percent of my patients, I have known for many, many years. So my practice is getting older. But in absolute terms, the times I have had to end someone’s life are relatively infrequent.

Q: In Canada, we’re still figuring out how this is going to work, but I’m curious about the role of a national consciousness in shaping assisted-death law. Can you tell me a bit about the Dutch mentality as it relates to assisted death?

A: Over the past 14 years, we have a law. What we’ve seen is in the first years after the law, the numbers seemed quite stable—there was only a slight increase. Over the past five years, there has been quite a steep increase, anywhere between 12 and 18 per cent on a yearly basis. Now we are talking about five and a half thousand cases each year—the average before was 1,800 cases, so there’s an increase of 300 per cent over those years. Still, the majority is cancer patients, but there is an expansion of psychiatric and Alzheimer’s cases, but also a third group, where we talk about an accumulation of diseases of the elderly: not terminal diseases, but diseases that constitute disabilities and limitations in daily functioning. The fact that people in those conditions are asking to be helped to end their lives reflects the extension of the euthanasia debate and thinking within the Dutch population: more people are asking for it.

Q: What lessons do you think Canada can learn from the Netherlands?

A: One of the first lessons should be that you make assessments as often as you can—you collect the data and you make assessments as often as you can. And also, try to find out what the issues of the physicians are, and one of the issues could be friction between what patients want and what physicians are capable and able and willing.

Q: What else should we learn from your country?

A: That it’s not bad to deal differently with death and dying, to take away the fear of death and dying. It’s become my personal experience that my patients have taught me that they are not afraid to die—in fact, some of them could not wait to die. That has provided a totally different take on my view of death and dying. What I’ve seen also is patients that want to die—and all of my patients died at home because I’m a family physician—their grieving (and that of their family) is totally different and much more positive when ending of life happens, in comparison to a patient who suffers to the bitter end.