In the 'Passion for the profession' section, we ask (care) professionals what drives them to dedicate themselves to pediatric palliative care. This time we speak to Annette Groenenberg, coordinator of the Emma Thuis team in Amsterdam. The first time we had agreed with Annette, she had to cancel shortly before, because a child was admitted to hospital again. Without hesitation, she dropped everything to support the child and family. Because she knew that the parents needed someone next to them to watch and think.

How did you get into pediatric palliative care?

'I have been working at the AMC Emma Children's Hospital since 1988. I had various positions there. I have been working for the Emma Thuis team for ten years now. It is great that we were the first Children's Comfort Team in the Netherlands. That is why we were allowed to invent everything and that is great fun to do. In the beginning we set up a multidisciplinary team with case managers, a psychosocial department and doctors.

We immediately started with home visits and aftercare. Home visits have great added value. It gives you a completely different picture of the family and you gain insight into what is going on at home, both with parents and with brothers and sisters. People feel comfortable at home. They tell other things than being in the hospital. We take this information back to the hospital and to the practitioners. And when we come to people's homes, they also know how to approach us very easily. That accessibility is what we want to achieve.'

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

'There are always children or families that make an impression or that you click with. I will never forget a boy who eventually turned eighteen and had to transfer to adult care. I helped him to go to the ROC. I will also not forget children who have passed away. Two years after the death, we are slowly phasing out aftercare, but with some people you keep wondering how they are doing and whether everything is going well.'

What is your next step in pediatric palliative care?

'Because we were the first Children's Comfort Team in the Netherlands, we set an example. I want us to keep an active role, by continuing to develop and by continuing to participate in new projects. For example, we have trained a nurse specialist for pediatric palliative care and we want to organize our own symposium.

Chronically ill children
As Emma Home team we do very nice work in children's palliative care. I think we can also mean something for chronically, long-term sick children. They do not die from their disease, but experience all sorts of things and are usually often hospitalized. These children and their parents also occasionally (temporarily) need the care we offer. We need extra people for that.

Support with transition to adult care
When young people switch to palliative care for adults around the age of eighteen, this can be difficult. Adult care is organized differently and the care landscape is complex. Sometimes that upsets a family. If there is a need, I think it is important that we, as case managers, can watch with the family to make the step as small as possible. '

“Report these families to us, let us think along, let us watch, let us help”

'Some care providers find it scary or experience a barrier to register a child with the Emma Thuis team. Especially healthcare providers who do not come into contact with this very often. I totally get that. Especially since the term pediatric palliative sounds loaded. The fear, also among parents, is that the child will die soon. We then explain that this does not have to be the case. Palliative does not always immediately mean terminal. Their child can live for years.

I would like care professionals to register children who need this care earlier. Or discuss with us whether a child can be helped with support from a Children's Comfort Team. Parents often need someone next to them. Someone who is easily accessible and has short lines within the hospital. Healthcare professionals also benefit. We can mainly help children who are registered with us in a practical way. If you know the family longer, you can better help them in the last phase of life. You then have confidence, you know each other and you know the home situation better. Register these families with us, let us think along, let us watch, let us help. We do not take over the care in the hospital or at home. We supplement and offer support where necessary.'