How did you get into pediatric palliative care?
“After my training as a lawyer and my medical studies, I came to work at the UMC Groningen. Soon I had to deal with end-of-life dilemmas and then you also have to deal with ethics. Act well. Something that has my special interest as a lawyer and as a doctor. After all, how can practice and regulations be properly aligned with the norms and values surrounding seriously ill children? How do you discuss this in a good way with the parents and the healthcare professionals involved?

The first research I did focused on how babies die in neonatal centers in the Netherlands. What diagnoses and what illnesses do they have? Who decides what and how are decisions made? After this I broadened my view to how older children die and what role parents have when it comes to the end of life of their seriously ill child.

Fueled by the results of this study and by all kinds of practical dilemmas, I came to the conclusion that pediatric palliative care was not yet in very good shape. The quality of care and availability left much to be desired. A lot of work had to be done to take pediatric palliative care to a higher level. That is why I got to work, together with others, and that has led to a beautiful, valuable collaboration with like-minded people who worked together. Together we introduced the first guideline for palliative care for children in 2013, and through this collaboration the current Knowledge Center for Palliative Care for Children was created.”

How do you view your role as a professor?
“Actually, my role as a professor should not be necessary. Pediatric palliative care should already be of good quality and available everywhere. In my opinion it should even be self-evident! But because the University of Groningen has linked this chair to my position, we attach importance to this subject and it makes more research initiatives possible. That is certainly valuable, because it allows us to accelerate developments in the field of pediatric palliative care and to connect the parties involved. After all, you get further together.”

Which case from the past motivates you to this day to dedicate yourself to pediatric palliative care?
“There is one case from about eight years ago that made a big impression on me. It was a boy born much prematurely, he had been under treatment with us for a long time. He was already damaged at birth and the first phase after that in the Children's Intensive Care Unit. He was deaf and blind and several organs were in bad shape, including his lungs and kidneys. Despite these complex problems, his parents were able to take good care of him.

I saw him when he was 14 years old. His brain could no longer function properly and his lungs were at the end of their capacity. We admitted him, but due to a severe flu, he suddenly went very badly. When it turned out that no discussions had been held and that important questions had not been asked: what are we going to do if a serious complication arises? What may be possible, but what may no longer be necessary? Everyone felt helpless. This was very annoying for parents and child and for the caregivers.

The boy has received 'the full treatment' and he was able to return from the ICU to the ward. However, everyone involved agreed that we should not do this again. But how did we proceed? We then made a plan together with his parents. In this we described what suited the boy and what we would do and what not. A second complication followed in which he deteriorated to such an extent that it became clear that he would die. Despite the plan, there turned out to be no protocols and no knowledge of how to actually do this; provide pediatric palliative care. How do you make sure this child doesn't suffer?

I found it painful and confrontational. This had to be different. That was the moment when I decided, together with the doctors involved: we must prevent such far-reaching decision-making from having to take place under time pressure in a hospital. We need to discuss how we approach things at a much earlier stage. This gives parents, children and healthcare professionals the opportunity to think and decide. It provides guidance for all involved. Partly due to what we have experienced with this boy and his parents, the guideline for children's palliative care has been established. As a result, we have arrived in a different world, one with something to hold on to. In this way, we were able to make a serious improvement from this case that did not go well. It has exposed one of the difficult points of pediatric palliative care. Not many children need palliative care. So care providers have little to do with it and no one is routine. But if you get caught, you need to know what to do.

However, must everything that is medically possible? No, that's not necessary for me, but then you have to find a good way to determine when you do something or not. In addition, we can only make decisions if we are on good terms with parents and child and if we know what is important to them and not necessarily what is important to the doctor! That is why there is now a central place, in the form of the Knowledge Center for Palliative Care for Children, where you can bring and receive knowledge and experience. With this we have been able to better organize the care for a small group of patients and that is partly due to this case.”

What drives you with regard to pediatric palliative care?
“Palliative care covers a very broad field. It covers all domains. I am in a hospital setting, where I can try to set in motion the greatest possible change. But we also have to look beyond the walls of the hospital. I therefore see that we need more people to bring all the other puzzle pieces that belong to this complex puzzle a bit further. In that respect I am just a small link in a large network.

The approach we have within that network is palliative care for children, but as far as I am concerned it is very much about how we improve the care for all (chronically) ill children. It would be great if caregivers could take their skills gained in palliative care and their awareness to other children in need of care. Pediatric palliative care as a crowbar to do more for parents and children. That is what makes my work in this field such a great motivation.”