Transcript: Andrew Denton interviews Eduard Verhagen on the Netherlands’ Groningen Protocol

Andrew Denton: I want to speak to you about the Groningen Protocol. Can you please paint me a picture of the kinds of newborns that the Groningen Protocol would apply to?

Eduard Verhagen: The Groningen Protocol was designed and accepted nationwide in 2005. Before 2005, we know from the literature and from reported cases that there were around two to three cases of newborn euthanasia every year in Holland. 

Those were babies with severe spina bifida that could not be operated, often combined with other congenital malformations. After the Groningen Protocol, when we discussed the criteria that could potentially legally allow euthanasia, we only had two cases in the following years, and those were not cases of spina bifida, so the numbers of cases of spina bifida have dropped to zero.

The only two cases that we’ve had were cases of EB, children that had a disease that was called EB – Epidermolysis Bullosa. It is a skin disease that may be mild, but it also may be extremely severe and those two babies had the extremest form of EB.

AD: Can you describe what the symptoms of that are?

EV: That disease is basically a disease where the skin is not attached well to the body. So wherever you would touch that skin, it would come off and leave a kind of a burn wound or scar. It wouldn’t heal, and not only the skin’s involved – also the mucus membranes, for instance, of the gastro oesophagus, which makes swallowing and eating very difficult. The problem of this disease is twofold: one, that it is very, very painful and it cannot be cured so we do not have possibilities, medically speaking, to improve the disease. 

Secondly, because of all those wounds and the problem of feeding the children well, they die early. So most of them would die somewhere between the first and the second year of life. And it is in those babies that the parents may come up to the physician and say, ‘Okay, we know that the outcome of this disease is not good, we know that you cannot cure the child, we know that there is pain that you cannot alleviate well. Could you please stop the suffering?’ So those are the cases in the last few years that we’ve seen where the Groningen Protocol was used.

AD: In our research, we have found a lot of people very casually say, ‘Oh look, they’re killing babies in the Netherlands,’ and they suggest that the protocol is something sinister. Now, from what you’ve already described, it’s used very, very rarely. If a parent finds themselves with a newborn with an incurable condition, how does the question of euthanasia come up? Is it something doctors suggest? How does it come into the conversation?

EV: Indeed you’re right: this has become very, very rare practice. But usually in the discussion about cure and care, all scenarios, all possible choices are sketched to the parents or discussed with the parents. 

This is usual practice. For instance, the haematologist would typically sit down and say, ‘Okay, let’s talk about your child. This is the disease, this is the likely outcome of the disease and these are the choices that we could make. What are your ideas and your opinion, parents, about those choices?’ 

We usually leave a lot of choices at this, partly up to the parents. So typically the discussion would be, ‘We could first try to treat the suffering as good as we can. If we do not succeed in treating the suffering in an acceptable way, we might increase medication up to the level that a child becomes totally comatose.’ That is is a choice some parents would choose for that. 

Other parents would say, we prefer to withdraw and withhold feeding and hydration because we feel that feeding our child has no purpose. Other parents would say, ‘In the view of this incurable suffering and untreatable pain, we prefer to end the life of our child’.

AD: I presume that this is a very, very difficult position, and … would there be some parents who take their newborn home to try and look after them to see if that’s possible, before reaching this decision? 

EV: Yes. This actually happened in, I think, the second case that was reported after the Groningen Protocol. The discussion was just like I told you. 

The disease was EB again – so, the skin blistering disease. The severity of the disease in this child obviously was huge. We all wanted to make sure that it was not possible to alleviate the pain and the suffering adequately. So first, the first few days the child was here and the parents were here in the hospital, and we showed them what would be the best way to deal with changing of the bandages, bathing the child et cetera, feeding the child. 

And then we asked them to go home and they wanted to go home, and they tried the best they could – all, of course, with a lot of supervision and support from specialised nurses and doctors. And after I think four weeks, they came back and they said, ‘Well, we’ve tried our best and we see now that this is a disease that is not compatible with life. The suffering is so immense, we don’t want this.’ 

So they realised that despite the best levels of care there are sometimes diseases that we cannot deal with in an adequate way. 

AD: It must be –

EV: It is extremely rare. 

AD: It must be –

EV: Sorry. 

AD: – a very emotionally draining experience for everyone. 

EV: Absolutely. Absolutely. For the parents this is a very difficult course. Often, I recall the last patient, there are other children in the house as well, so this is something that weighs heavily on the shoulders of a family. 

On the other side, they know that every day that they can have the child at home is cherished, so they … they go all the way to try to do the best they can in the interest of the child. But if they fail to reach a good balance, then we discuss again: ‘okay, what options do we have?’

Would it be terminal sedation? Would it be withholding or withdrawing feeding and hydration? Would it be neonatal euthanasia? All those choices are available in the light of untreatable suffering.

AD: And … just so I’m entirely clear, all of the cases of babies who’ve been euthanised under the Groningen Protocol, they were all incurable conditions. They were terminal conditions. These babies were not going to live beyond, what, a couple of years? 

EV: Absolutely. So, the criteria of the Groningen Protocol are clear, in the sense that the diagnosis and outcome must be hundred percent sure. There must be a disease that is not treatable and incompatible with life – so all children are expected to die in the near future. Nobody can predict how near that future will be, but generally, we would say somewhere between a few days, weeks or months, rarely years. 

The second criteria that is extremely important is the unbearable and untreatable, hopeless suffering. This is of course, a difficult criterion because suffering has a subjective element in it. 

And, in the cases that I have just talked about, the EB cases, I don’t think there would be any person in the world that would say that those babies aren’t suffering. So, it is only when we’re all convinced, parents as well as healthcare providers and other experts, that there is extreme suffering, that would make a patient a candidate for neonatal euthanasia. 

AD: And I think the key there….

EV: Third, very important. Sorry?

AD: I think the key there is when you say the parents, because the last people in the world that wish to see a newborn suffer are the parents of that newborn. 

EV: Absolutely. Neonatal euthanasia in Holland can never be performed if the parents are not fully consenting, asking for this procedure. 

So basically what we do is we offer a possibility for parents in the context of unbearable and hopeless suffering. They may want to choose this option, but they also may choose not to have neonatal euthanasia. And this is, I think, very important and totally in line with how end-of-life care is organised in our country.  

If you’re an adult with hopeless and unbearable suffering, you could ask for euthanasia. You don’t have to, it’s your choice. And even then, the doctor would have to make sure that you fulfil all the criteria. But the idea is that parents have a say in how their baby will die. 

It is sad, it is terrible, but knowing that your baby will die, we would say: please allow parents a say in how they would die. 

AD: You must be aware of how this is sometimes portrayed in other parts of the world. As I said, I’ve heard it described here in a sinister way, as you’re killing babies. As though there are some less compassionate motive. How does that make you feel? 

EV: Well, indeed I noticed that. Obviously the idea of allowing parents and others to – let’s say – organise the circumstances of dying of a child is causing a lot of, well, contrasting opinions. 

I think what bothers me most is that the facts that are given about Groningen Protocol hardly ever are correct, so the way we’re talking about the protocol, the nuances, the details of it, and the huge weight that is given to the assessment of the parents as well as the assessment of the physicians, and the rarity – the fact that it is only used for extreme situations – is not always acknowledged. 

I think the argument that is most often used against the protocol is that it would be the start of a slippery slope. 

So people often say once you start allowing this for very strict reasons, there will probably in the course of time be erosion of norms, and people would likely use the protocol for much less strict situations. And that is also why we monitor end-of-life care and end-of-life decision making in our county so strict. We want to make sure that we see how the protocol is used and what is happening after we accepted it. 

And this picture now, we have now a ten year later situation, so in those ten years we’ve seen the numbers of cases decrease incredibly – so the fear of the slippery slope, I think, we’ve demonstrated is totally needless, and this I would expect would make people, less, less critical about the protocol but, on the other hand I see that it’s still the fear that makes most people say that we shouldn’t go this way.

Hopefully, publications, media attention in the right way could help to shed another light on the protocol and explain those details and explain the good part of it. 

I think it’s important to realise that we’re not saying that everyone should adopt Groningen Protocol. The reason that we have it is very much related to how the Dutch deal with death. 

We give a voice to parents, we give a voice to adults with hopeless unbearable suffering. This is a choice, this is what a society can do. Alternatively, and this is the situation before the Groningen Protocol, you don’t really know what’s going on, you just hope everyone is doing the good thing but you really don’t know. The Dutch have decided to regulate this practice, bring it above the table, put the spotlight on it and try to make it as transparent as possible, and this is what you’re looking at. 

This is a step towards transparency, and we monitor every decision and we register every decision and every death, and that is our way to get a hold on these very very ethically and medically difficult cases. 

AD: Could you confirm that before the protocol was published, that there was something like a decade of discussion about it, and it was fully endorsed by the Dutch Paediatric Association? 

EV: Yes. This is what happened in 2005: we fully endorsed it with the Dutch Paediatric Association, so it’s a national policy. 

Afterwards – this is interesting – the government adopted it and added a few rules and procedures as well. One of them is that all cases need to be reviewed. In the old situation, when we made the protocol and when it was adopted by the Dutch Paediatric Association, the review was done by legal people. What the government did is they said, ‘We feel that the review would be better if we would add ethical people and medical people to the committee who would review the cases afterwards.’ 

So nowadays, since roughly 2007, the cases that have been brought forward have been reported or reviewed by a multidisciplinary committee of experts. And the Dutch Paediatric Association is very happy with this step made by the government, because it makes reporting a lot easier. You know that your case will be reviewed by people who know about the situations and they are experts in their field. So that is an important step which shows that it’s not the paediatricians only – it’s also the government who endorses the Groningen Protocol. 

AD: If I may take you back to those extreme cases of spina bifida? 

EV: Yes.

AD: I was at a public forum in Sydney a couple of months ago, where a person who objects to euthanasia laws, who has spina bifida, stood up and said, ‘look, under the Groningen Protocol I may have been euthanised’. Can you explain to me what severe spina bifida is, and why that might be considered suitable for euthanasia? 

EV: This is a comment that we sometimes hear, and it is a far from what actually happened and happens. 

Two things about this. First, spina bifida can be presented in a broad variety of severities. The problem of the spine not being connected can be small, and it can be extremely large. Spina bifida can be combined with other congenital malformations like brain malformations, but also chromosomal malformations, trisomy 21 or trisomy 18. 

The patients that we saw that were euthanised before the protocol were the ones that didn’t have spina bifida that could be managed with an operation. They didn’t have spina bifida without other congenital malformations. They had a complex type of spina bifida. 

Now, the problem of course is that I wasn’t the doctor of those babies – so I cannot give you all the details of those babies. More important, in my opinion, is that nowadays, especially since 2007 in Holland the prenatal ultrasounds are made available for all pregnant women. 

This is a very important decision made by the government which has resulted in an interesting phenomena. The phenomena is that babies with spina bifida nowadays are hardly born. The reason for that is that obviously, parents who had that 20 weeks ultrasound – and found out that their baby had a congenital malformation like spina bifida – decided to choose for termination of pregnancy before the 24th week.  

In our country, and this may be similar in Australia, women are entitled to choose for termination of pregnancy before the 24th week. After that period, it is the doctor who decides. 

AD: Yes. 

EV: Now, we know from all the statistics that we have here that there is a huge decrease in babies born with spina bifida after 2007, and there is an increase of termination of pregnancy because of congenital malformations like spina bifida. This has resulted in the conclusion that parents seem to choose termination of pregnancy over birth – and this is interesting because the level of certainty about the magnitude of the spina bifida in an ultrasound at 20 weeks are relatively low, whereas the total picture of the complexity of the spina bifida is best after birth.

So in this line, and for me it would be reasonable to say, instead of allowing termination of pregnancy in a situation where there is a lot of uncertainty, why not have euthanasia available for those cases that turn out to be so severe and so complex that we cannot manage them well? 

That is something to think about. So we now see that parents choose very early to terminate; I’m not sure that that is a very easy decision, so I’m not totally happy with this change in practice. 

AD: Because what you’re saying is that it’s possible, because the screening is imperfect, it’s possible that that child will be able to lead a reasonable life? 

EV: Yes. The thing is that, in many countries and also in Holland, it is determined that the decision about termination of pregnancy, until 24 weeks of gestation, is in the hands of the mum. So the mum can decide whether or not she chooses to stop the pregnancy. Also, if there is low certainty or high uncertainty about a congenital malformation or congenital disease, that is up to her, it’s her choice. That is not an easy choice. 

And the practice before this screening was refunded and made available was that the most severest of cases – cases that were often not born in other countries who already did those ultrasounds and already had this prenatal screening process in place – we only limited the euthanasia for those cases that were the extremest. 

 Whereas nowadays, given the level of uncertainty, mums need to decide with a lot less certainty. I’m not sure whether this is a good trend; I only see that this is happening. We have very detailed registries of both pregnancy terminations, at all stages of pregnancy, and babies born with congenital malformation. So for us it’s relatively easy to follow those trends and see the effects of the introduction of prenatal screening.

AD: Eduard, thank you. Your explanation has been very clear and I certainly hope that we will add to the public record a much clearer and more honest explanation of what the Groningen Protocol is. 

EV: Thank you for giving me the opportunity.