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

'Just before I started my training as a palliative care physician, two children died in our practice. That was about three years ago now. The Knowledge Center for Palliative Care for Children did not yet exist at that time. With both children I had to look for information and knowledge myself. What was very valuable was that I had a Doctor for the Intellectually Handicapped (AVG) as a backup with whom I could discuss everything. I then found out that it is very good to have a buddy . Someone in your own region you can spar with. That fueled my need even more to do the training as a senior physician and to be a buddy for colleagues myself.

In addition, I saw in one of these two children how important it is that the caregivers who are involved in the care know what to expect. That they have experience with pediatric palliative care. Especially when a family is about to lose a child, you can only do it the best you can once. If the care in this last phase does not run smoothly, it can be harmful to the family. They are left with extremely unpleasant feelings, in addition to the loss and grief, and it may reinforce the anger and guilt that are present. You don't want that. I then experienced how important it is that those who provide 24-hour care are well prepared. Unfortunately that was not the case in one of these situations and I learned a lot from that.'

It's great that you, as a GP, are so immersed in (child) palliative care, because that is not common.

'No that is right. Especially when it comes to the terminal phase within palliative care. A GP may experience once or at most twice in his/her career that a child dies under his/her care. It therefore never becomes second nature to guide the child and family in this. Cold feet persist. But I have experienced that it is precisely then that it is important to be proactive. As a GP, you come into contact with 'regular' palliative care – if you can call it that.

What I continue to find so special about supporting families with a child who needs palliative care is that as a GP you become very involved in the family, as it were. You almost become part of the family. I don't experience that in adult care in this way; that you fit in. That level of involvement. However, it is very nice and important, both for the child and family and for me as a doctor.'

How did you get into pediatric palliative care?

'Last year I completed the training to become a palliative care physician. I've wanted to do that further education for a long time. As I said, two children died in our practice just before I started. Also, just before the end of my education, my nephew died of a tumor. This is how the subject came more and more on my path. Gradually I became more and more aware of how important it is to have a doctor who not only knows the child and family, but who has also been given tools around care for children and young adults, and who knows how to take the right path. In addition, it is nice if someone shares that knowledge with you when you, as an (inexperienced) doctor, struggle with all the emotions in a process with terminally ill children. I'd like to do that.'

You recently gave refresher courses on pediatric palliative care to senior palliative care physicians in training, together with expert by experience Marjolein Broeren. What do you want to pass on to these doctors?

'My thought was: I think all junior doctors should know their way around. They need to know how the Integrated Child Care Networks (NIK) work and they need to know how to find the Children's Palliative Care Knowledge Center. I see this as basic information for executive doctors. That you know this exists. During the refresher course, Marjolein shared a lot about her personal experiences and I provided the basis around this. How does the Knowledge Center and how do the NIK work? What is the structure and where can you go?'

You are also involved in the revision of the palliative care guideline for children. Why is it important for you to participate in this as a GP?

'During my training I had contact with the Emma Thuis team; the Children's Comfort Team of the Emma Children's Hospital in Amsterdam. I then attended a multidisciplinary meeting. Through them I came into contact with Eduard Verhagen and became involved in this guideline.

As a general practitioner, I mainly look at the section in the guideline that deals with the organization of care at home. The accompanying piece of this and how to properly shape it at home. If care is moved from the hospital to home, a GP can be of great added value. I am therefore happy to contribute by thinking along with the revision of the guideline.'

What are your next steps in pediatric palliative care?

'I'm now doing a four-day basic training to further broaden my knowledge. In addition, I hope to provide further training and I would like to connect as a consultant to NIK Noord-Holland & Flevoland, in order to be able to share knowledge with colleagues. And if issues arise regarding the organization of care at home, network members can discuss this with me as a general practitioner.

Other than that I don't really know. Sometimes I sometimes think: 'Why am I doing this?!', (child) palliative care is a tough subject, but I think this is so important that I think I have to persevere. I don't know exactly how it will turn out yet. I must first experience what I can do with my acquired knowledge. First learn more myself and then hope that I can be of added value to others.'