Live & let die

by Rebecca Macfie / 12 March, 2015
Mercy killing has been legal in the Netherlands for 13 years. Rebecca Macfie talks to one of the staunchest advocates of the law.
Rob Jonquière: “We do not turn our eyes away – we try to regulate it.” Photo/Hagen Hopkins

As a family doctor in the Netherlands, Rob Jonquière complied with several requests from patients for euthanasia long before it was legal. Later, as head of the Dutch Right to Die Society, he was heavily involved in the development of the 2001 legislation that made the Netherlands the first country in the world to decriminalise the practice. He visited New Zealand recently as the communications director for the World Federation of Right to Die Societies.

Euthanasia was legally tolerated in the Netherlands long before it was decriminalised in 2002. Why?

We consider 1973 the start of legal tolerance. A doctor was prosecuted and punished symbolically with a one-year suspended sentence. She was a village family doctor, and the whole village came out and said, “Our doctor is not a murderer.” They had a petition and got wide support – that was the start of the Dutch Right to Die Society.

The media and professional organisations became interested, and right from the start the medical association in the Netherlands has been supportive of euthanasia, and that’s been extremely important. Elsewhere in the world, when right-to-die initiatives are taken there is immediately a struggle with the doctors’ association, which says, “We are against it.”

In 1990, we had a big survey of doctors asking what they actually did in terms of end-of-life choices. They were guaranteed they wouldn’t be prosecuted for their answers. There was an 80% response rate, and from then on we knew that euthanasia was happening not just a few times a year, but about 3000 times a year.

Why was it formally decriminalised?

With 3000 euthanasia cases a year, it couldn’t be treated as an exception. So it was time to regulate it, and the best way was through the law and giving doctors the certainty that if they followed the law they would not be prosecuted – because that was still a danger.

Since World War II, the Christian Democrat party had been part of the governing coalition, and it was against euthanasia. But in the mid-90s, we had a government without the Christian Democrats, and parties that had been working on legalising euthanasia thought that this was the loophole in the political situation that could be used. So in 1999 a Liberal Democrat minister brought the bill into Parliament, and the majority coalition in the lower house approved it and we had success in the senate as well. It was implemented in April 2002.

How does someone go about being euthanised in the Netherlands?

There must be a request from the person involved that is well-considered and voluntary and not pushed on them by relatives. Someone can’t just come in and say, “I want to die by this afternoon.” There must be unbearable and hopeless suffering. This is unlike Maryan Street’s [private member’s] bill that stipulated the person would have to have a terminal illness and be likely to die within 12 months.

The patient is the only one who can say, “My suffering is unbearable.” On the other hand, the doctor is the one who tries to offer possibilities and treatments to make the suffering bearable, and if he’s not successful he can say, “I don’t have anything for you, it is hopeless.” It is the combination of unbearable and hopeless that means they can go a step forward.

Next, the doctor must consult a second independent doctor to assess the situation and say that the first doctor has taken the right steps and come to the right conclusion. The doctor has to go about the euthanasia using the appropriate medications, and it must be reported to a review committee consisting of a lawyer, an ethicist and a doctor. They assess the case and say afterwards whether the doctor has performed euthanasia according to the criteria. The statistics show that 80-85% are terminal cancer patients who died maybe one or two weeks sooner than they would have without euthanasia.

Californian Brittany Maynard was diagnosed with brain cancer and given six months to live. She later moved to Oregon to take advantage of the state’s assisted suicide law.
Californian Brittany Maynard was diagnosed with brain cancer and given six months to live. She later moved to Oregon to take advantage of the state’s assisted suicide law.

What sort of cases make up the other 15-20%?

They are more complicated cases – perhaps where there is not a prognosis of dying very soon but there is unbearable suffering, such as emphysema or serious heart problems. A small percentage is where the patient is suffering unbearably because of psychiatric illness.

Psychiatric patients? Doesn’t that support the argument that legalising euthanasia sets society on a slippery slope?

Every question for euthanasia is a difficult one, but this is more difficult. Also, you are talking about a patient who is not in the dying process yet. I use the example of an individual with chronic depression who has been treated for 20 years with medication and electric shock treatment and still the depression is returning. These are deeply ill people. They are not terminally ill but they can suffer enormously knowing it will never go away and they might live with it for 20 or 30 years. You could say they are suffering even more than a cancer patient who knows he is going to die anyway.

What has the review committee had to say about these cases?

There are five regional review committees and in such disputable cases they discuss it with all the committees, which is 15 people. So you could say that they make the standard, and since they have allowed doctors to perform euthanasia in psychiatric situations, we are now seeing very gradually that psychiatrists are getting the courage to answer these requests. In earlier days psychiatrists would never comply with requests because they always thought, “Let’s wait – next week there might be a new medication.” They feel that they failed if they let the patient go.

Are you comfortable with the extension of euthanasia to mental health patients?

Oh yes. I understand that opponents point to the slippery-slope argument and developments in the law to say that we are going in the wrong direction. I am very happy with our law because there is a framework and it is about suffering, not about what causes the suffering. In that way it is not a slippery slope: it is a development where doctors are used to the law, are no longer afraid to be prosecuted and know how it works.

Do you allow children to be euthanised in the Netherlands?

We have age limits – an 18-year-old or older is an adult and can make a request. A 16- to 17-year-old can ask, but the parents must be informed. A 12- to 16-year-old can ask, but the parents must consent. Below 12 there is no euthanasia.

We have had situations where paediatricians were confronted with severely handicapped newborn babies and they designed a protocol that follows more or less the same criteria as the euthanasia law – there has to be a request, intense communication; there has to be unbearable and hopeless suffering. And since it looks like the euthanasia protocol, people abroad who want to discredit euthanasia say, “Look, now they kill babies” – but it is a completely different protocol and doctors have to report to a different committee.

Are they killing babies or not?

We are not killing babies. From what I understand, in most of these cases a doctor has taken emergency action because the baby was not breathing during birth and has put it on a ventilator; the baby has been born alive but the situation is futile. They’ve stopped the ventilation but the baby has carried on living, which sometimes happens.

You could blame the Dutch culture, where we do not turn our eyes away – we try to regulate it.

Terminally ill Wellingtonian Lecretia Seales is campaigning for a law change in New Zealand. Her story, “Dying wishes”, from our January 17 issue, is at Photo/Hagen Hopkins

Is it true that as a doctor you helped patients die before the law changed?

All life events were of interest when I had my own practice. I did deliveries, so I was instrumental in one of the most intimate and emotional happenings in a family’s life. In the 1970s, most of the debate on euthanasia was within the medical profession, and the first requests I had were from nurses who knew the situation and asked me my opinion on euthanasia, and I would have to say, “I think it is your right.” The only problem I had was that I didn’t know how to do it. So I have to say bluntly I made a mess of it the first time. So I went to an anaesthesiologist who taught me how to do it next time. It didn’t happen that many times – looking back I think I had eight or 10 requests for euthanasia and I performed two or three. The others died naturally. We didn’t have the grade of palliative care we have now, but I did whatever I could for them.

For me euthanasia and palliative care are not separate – they go together. It should not be presented as an alternative – you shouldn’t say you can have euthanasia but as an alternative I can give you palliative sedation. It depends completely on what the patient wants – does he want to sleep away gradually or does he want to live to the moment where he says enough is enough and I want my life terminated?

What are the arguments about extending the right to euthanasia to people who are simply “tired of life”?

Some people say, “I have lived long enough, please give me a little tablet that finishes my life.” The discussion is now going on whether you go to the situation where that sort of medication would be available and on what conditions, or whether – and I belong to this group – these very old people are suffering of life itself. Many of those old people have very minor ailments, and any ailment alone is never sufficient argument for euthanasia. But if you have a combination of ailments that are physical, social or mental, that when collated together might be an argument to say this is unbearable and hopeless suffering, I think they would fit into the framework and you don’t have to change the law.

One study reported that half of Dutch doctors try to avoid conducting euthanasia. What does that tell us?

The whole event is emotional. From the moment the patients asks, you are obliged to communicate, talk, visit and find out what the limits are and what they want. So it costs you time and energy. Some doctors say they have sleepless nights around it. It’s on your mind. So many doctors say, “We can do it three or four times a year and that is the maximum I can bear emotionally.”

The Supreme Court of Canada has issued a major decision recently in which they frame euthanasia as a matter of civil rights. What are the implications?

I understand the court has argued that euthanasia is a constitutional human right and on the basis of that there should be a law to legalise assisted dying. The fact they have used human rights arguments might give impetus to other countries to reconsider their law. In Colombia, for example, there has been a Supreme Court decision where euthanasia is a possibility as case law, and people there have said since we have this Canadian Supreme Court decision, we will have to do what we should have done 20 years ago, which is make it a law because it is a human right.

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