Which case from the past motivates you to this day to dedicate yourself to pediatric palliative care?

“That is a case with a complicated question from parents. This concerned a question on an ethical level, the course of the illness of a child with a neurological disorder and how to proceed. The approach we had in mind as care providers was different from how the parents saw it. This caused a lot of discussion in the department.

I was responsible for taking care of that child. Because the views differed, I started discussing with all those involved how we could proceed, how we could meet the parents' wishes, but still adhere to the legal-ethical rules. I then ended up with a colleague, a pediatric oncologist. He already had the necessary experience with pediatric palliative care. We then consulted with the medical ethicist to see if there would be support for the approach we wanted to develop and from there we made a plan for this child.

This was a very instructive case study. Everything came together, also in terms of emotions. We have learned, among other things, that nurses must be properly involved in the various consultations. Since then, they have always taken part in our multidisciplinary consultations. And it taught me that what you as a care provider have in mind as good for the child and parents, that this does not have to match the wishes of the family at all.

Another important lesson is: also have an eye for the people in your team. You are sometimes so intensively involved with parents and child, but also keep an eye out for each other and how your colleagues are doing, what does this do to them?

Fortunately, it went well, in that sense: the parents also experienced the chosen approach as good. Within what was possible at that time, this went as well as possible for all involved. Their child has acted as a kind of tipping point for us. We wanted a more structural team in which we could consult with each other about children with an end-of-life question. That was the start of a children's palliative team, which later became the Children's Comfort Team. I often think of this child and I also regularly use this case as an example in education.”

How did you get into pediatric palliative care?

“The case I mentioned made me want to know more about pediatric palliative care myself. I work with children who are vulnerable, children with hereditary and congenital disorders. These are often children with heart, lung or neurological problems. These children often come under our care from an early age. Most of the children I see are mentally handicapped, so I can't really ask them what they want. That goes through the parents. As a result, I build up a relationship with them and I have intensive contact with them. That is very valuable. And because I follow these children for a long time, I often teach them to read well. Because, I walk with them and their families until they grow up and move into adult care, or, sadly, until they die.

I can think along with them, solve problems and make things bearable. I have conversations with them about the future – how do they see it for their child? What do they want and what not? – and I also sometimes ask the tough 'what if' questions.

Palliative care is an inseparable part of this, as far as I'm concerned. It is still a big misconception that (paediatric) palliative care is only terminal care. However, it is not just about dying, it is also about living. I think it is a huge challenge to go for that with heart and soul. So providing pediatric palliative care is what I actually do every day.”

You are one of the initiators of the Children's Comfort Team at the Sophia Children's Hospital, how are things going now?

“The KCT is now up and running, but it remains complicated. We have a super good team, but we are still not structurally funded. Unfortunately we still can't get that off the ground, so everyone is doing it on the side. As a result, other tasks often take precedence. Of course you would prefer to be able to link nurses to families, as they do within other KCTs, but we can only offer that to a limited extent. Everyone knows where to find us better, so that is certainly positive!”

What are your next steps in pediatric palliative care?

“I want to see if we can get things better organized around the KCT and if there is funding for it.

Advance Care Planning (ACP) is also very important. That we discuss different scenarios with the child and family very early on. That we have a clear picture of their wishes and needs, now and in the future. How are siblings? What are parents worried about? How do parents see their child's illness? It takes time to have those conversations with each other and parents must also be open to it. I think that could be integrated even more into the standard working method and there is still room for improvement in how you conduct these types of conversations properly.

Part of ACP is talking about "what if." Uncertainty is at the heart of pediatric palliative care. You're never sure how it's going to turn out. For example, if a child is admitted with a respiratory infection, I always mention that the first can also be the last. Sometimes children suddenly elude us because of the underlying condition. Conversely, children sometimes live much longer than you expected. It is important to deal with that uncertainty and to explore it together. That could be a bit more conscious, so that would be my mission.”