An interview with Rob Jonquière
News & Updates | November 2, 2022 | Patrick Lemoine
Rob Jonquière is the current Executive Director of the World Federation of Right to Die Societies (WFRtDS), and has held that role since 2008. Jonquière was also the CEO of The Dutch Association for a Voluntary End of Life (NVVE) from 1999 to 2008. Prior to his advocacy work, Jonquière worked as a family doctor at his own practice in Hengelo, in the Netherlands.
Jonquière led the General Assembly in Toronto during the 2022 World Federation of Right to Die Societies International Conference, hosted by Dying With Dignity Canada (DWDC).
You were the CEO of NVVE for nearly 10 years and you have been the Executive Director for the WFRtDS for nearly 14 years now. What makes you so passionate about advocating for the right to die?
As CEO of the NVVE, I was involved in Dutch lawmaking; just six days after I started my job there, the Minister of Health brought her bill into Parliament. Right from the beginning, I joined all discussions on assisted dying until the bill passed in Parliament in 2002.
In my function as the director of the NVVE, I saw it as my job to see that the law was installed and implemented as it was meant to be; by being involved I became passionate about it.
Being active in lawmaking made me interested in how things are going, how advocacy is working, and what kind of troubles you have to go through to get a law going. As CEO of the NVVE since 2001, I was contacted by a large number of international people and the media asking me about our law, how it works, and how it came about. The Netherlands was the guide country for assisted dying and that automatically makes you more involved, and more passionate.
You were the Executive Director for the WFRtDS before MAID legislation was passed in Canada. What have been some of your thoughts and insights as you watched MAID become a reality in Canada?
In 2006, the World Conference was organized in Toronto by Dying With Dignity Canada (DWDC); from then on, I kept myself informed about the developments in Canada.
In 2016, the World Conference was organized in Amsterdam, and people from Canada — two doctors, Dr. Stefanie Green, and Dr. Ellen Wiebe – attended. I talked to them, trying to teach them a little bit about how it works in The Netherlands. Of course, they were doctors being confronted with a law that was going to be implemented. They had not the faintest idea about what that would imply.
That is the big difference between Canada and some other countries, certainly Canada and the Netherlands. The Netherlands had a practice of euthanasia in place since 1985, where doctors applied euthanasia or complied with requests by doing it very carefully, and in accordance with judicial verdicts. We had criteria formulated, and because of that, even when clinicians reported their actions, they were never convicted or prosecuted. So, in the Netherlands we had experience doing it; this means we knew what the problems were, we knew how to report them, we knew how it worked, and we knew which medications to use, etc.
Canada is a much larger country than the Netherlands, it has large areas without doctors. Ellen and Stefanie identified that as a problem; how do you assess for an assisted death if it is not your own patient? In the Netherlands, it was mostly the family doctor doing it; they had been the doctor of the patient for a long time and so they know the patient, they know the family.
In the Netherlands, we had an accepted and tolerated assisted dying practice developing and only later it became law.
In Canada, doctors had to start from scratch and create processes after the law was passed. The Canadian Association of MAID Assessors and Providers (CAMAP) has been working very hard to develop the whole system now that assisted dying is legal in Canada.
What are some of the issues in the world right now concerning assisted dying?
In countries where there is a strong religious group, you see a lot of anti-assisted dying movements, certainly, where the Roman Catholic religion is abundant. We know the Catholic Church is by principle against it; you see this even in the Netherlands.
So, religion is one of the main factors. The second thing that I see is that there is a kind of political fear.
I have, in our experience in the Netherlands, come to understand that for a layperson, or for me or for you, it is quite simple. You’re in favour or you’re not in favour of assisted dying. So, you vote yes or no.
We know that around the world, generally, 60 to 80% of the population is in favor of an assisted dying law. So, you should say that when members of Parliament are chosen by the people they should have to vote in favour. But that is not happening because a politician when he or she votes yes, he or she must consider the consequences. The people who choose me, what are they thinking? If we say yes, what does it imply if there are mistakes, or something goes wrong? Or shall we not first go and try palliative care? They see all kinds of problems around it so they cannot say just simply yes or no.
Politicians often avoid saying yes. They say, “Here, first you should do this, or first you should do that.”
There are serious, terrible consequences that I have seen, for example, in Victoria, Australia, where they finally have a law, but it is the most conservative law in the world. I think you have to comply with about 48 criteria of due care. And now we see in Victoria movements to change the law there because everybody sees it as impractical and that it won’t work.
CAMAP has been doing fantastic work developing good guidelines and practices, but also Canada still has problems. You see in Canada there are still discussions going on about MAID for psychiatric care situations and MAID for dementia. I’m not saying that that is simple in the Netherlands, but our law has a main scope of suffering and in that scope, all kinds of situations are fitting in. It is up to the doctor and the patient to try to put the patient’s case into that scope.
The Canadian Mental Health Association (CMHA) has voiced its concern about mental illnesses as the sole underlying cause for MAID. How have people in the Netherlands responded to that sort of concern?
In the Netherlands, it is only in the last four or five years that we see a small rise in the number of cases for psychiatry, although we have known for years already that there was a large demand for psychiatric situations. For example, in the Netherlands, if someone has a psychiatric situation and has a legal right to have his/her request to have euthanasia, there now is a waiting period of two years before they get help.
Psychiatric conditions are seldom terminal. For a psychiatrist, it is also very difficult to admit that they have no means left to treat the condition. And that tends to be the difference, and I think that is a problem that’s seen in all countries where we have this practice.
An oncologist has much less of a problem to say, “My possibilities are finished, I cannot do anything for you anymore for your condition.” If you have a physical condition, you can take blood samples or you can take X-rays and say, “See that’s the problem, there it is, that is growing and that is bad so that is why it is terminal.”
You can’t take a diagnostic X-ray or an MRI for a psychiatric patient. You can’t prove it with something definite. You have to tell the story and be convinced by the story that is a condition that is fitting in with the law.
People who are against the situation, say that once you start to allow euthanasia legally, you have the start of a slippery slope. They believe that you start with terminal physical conditions, and you end by giving euthanasia to psychiatric patients. So, the difficulty is for people with a psychiatric condition who apply for euthanasia, they need to prove and argue why the situation they’ve gone through causes the same kind of suffering as a terminal illness.
If you make a new law, it is very complicated to ensure the law addresses all the possible situations. You take the one which is apparent, and then you have to adapt it. And that’s what’s happening now in Canada; I’m sure you will succeed.
When euthanasia was first legalized in the Netherlands there was the concern of a ‘slippery slope’; is there any evidence of this?
When developing the law in the Netherlands, our minister Else Borst advocated for leaving out the terminology of terminal condition in the law. So, our law says there must be unbearable and intolerable suffering. Suffering, just that, suffering. And if you look in other countries, like the USA., you must have a physical condition, which within six months will lead you to die.
Our minister has always said, “No, my law is about ending intolerable suffering.” If the patient is suffering so much, and says, “This is not compatible anymore with my life” and that patient can convince me that it is unbearable and I have no real option to take away that suffering (it being hopeless), then I’m at the end of my possibilities and we can comply with the law. So, even in non-physical conditions that are unbearable and hopeless, there is suffering and therefore no slippery slope.
You are coming to Canada for the WFRtDS International Conference in November. What can a newcomer expect from one of these conferences? Why are they important?
We advise the hosting societies to concentrate on the country itself and the countries around it, instead of trying to make it a world meeting. That is why the 2022 conference itself is the responsibility of DWDC. My responsibility is to host the WFRtDS General Assembly.
We help and support, but the main subjects are of interest to the host country. This year it is Canada. In two years’ time, it will be one of the European countries, and in four years’ time, it may be one of the Asian countries. We try to host every two years on different continents.
What I expect is for people to meet, talk about the issues, and share news. What’s important is to meet the people so that you see their faces and you know if in the times to come you have a question, you can ask them. I think what is called the “corridors of the meetings” is even more important than the presentations themselves – however interesting they are.