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

“The first thing I think about is my own children. I remember how happy I was with my first pregnancy. But I also found it exciting, because my work as a remedial educationalist at the Emma Children's Hospital made me aware of all the things that could go wrong. After six and a half months I was found to have preeclampsia. With sirens blaring I was taken to my own hospital. In the place where I felt so safe, I gave birth to David. Together with doctors who were also my colleagues, we made difficult decisions that we look back on fondly. After three days our son passed away. The pain was heartbreaking. Then I felt what parents I supported in my work were going through. At that time I accompanied children with cancer who were dying. I had beautiful, intense conversations with these boys and girls and their parents. After David's death, I resigned. I would fail them in my own grief. I did continue to give training in hypnosis and pain management. This way I could continue to mean something to these children and their parents. A year later, now 29 years ago, we got our Rebecca. We saw that she was different, but since David was only three days old, we weren't sure how a baby was. The first year we hoped it would work out. When she was fifteen months old, we were diagnosed by a pediatric neurologist. She was found to have Angelman syndrome, which would leave her severely disabled.

How did you get into pediatric palliative care?

'After Rebecca's diagnosis, I became acquainted with care for the disabled. That was a warm bath. I missed the amount of expertise they had there in the hospital. I wanted to do something positive with that experience and also thought that all experience from disabled care should go to the hospital. That is why in 2001, together with other mothers and care professionals, I wrote the handbook 'Special care for special children'. It contains advice and tips for the supervision of seriously disabled children in hospital. That book was the indirect reason to return to work at the Emma Children's Hospital. I like pioneering and I like working in a field where not much is happening yet. So I started working as a project manager to improve hospital care for children with intellectual disabilities. In that role I had conversations with parents and thought along with the paediatricians and nurses about how to better guide this vulnerable group of children. Much has improved in this regard over the past twenty years. Definitely not just because of my pioneering work. Somehow the time was right for it.'

Shared decision-making

'In the 1980s, patient empowerment grew. And healthcare professionals also felt that things had to change. It was not only the doctor who had to determine the treatment policy, the doctor and patient had to do that together. In other words, shared decision-making. I heard the same desire to make decisions together from the parents of children with an intellectual disability. They have often been making important choices for their child for many years. But in acute circumstances, when their child suddenly had to be admitted to Intensive Care, they were not or hardly involved in the decision-making. Not even when it came to major decisions such as whether or not to stop the ventilator. Involving parents had to be improved, everyone in the Emma Children's Hospital became more and more convinced of that. But how exactly? After all, how do you involve parents in precarious decisions with far-reaching consequences without burdening them too much? And is there one best way or does it differ from parent to parent? I found these questions so fascinating that I wanted to research them. And so I became a PhD student at the age of 48.

The first part of the study consisted of interviews with paediatricians and parents of children who had died at Emma Children's Hospital following an end-of-life decision. It showed that most parents did not want to have the final say in major decisions. They thought it was much more important that their - preferably permanent - pediatrician listened carefully to them and took their wishes into account in the final decision. And that decision was not made hastily. The second part of my research consisted of a survey among all Dutch paediatricians asking how they involve parents in major treatment decisions. During the last and perhaps most beautiful part of the research, I was allowed to attend conversations that pediatric intensivists had with parents. That felt like a great vote of confidence. After a series of serious health problems, I finally obtained my PhD in 2015. After much hesitation, I gave my dissertation the title: 'Sharing the burden of deciding: How physicians and parents make end-of-life decisions'. This is because these decisions demand a lot from the parents, but also from the doctors and nurses who care for the child. The most important research results were now in a row, but I had not yet reached the parents. That is why I wrote 'If your child cannot decide for himself' with co-researcher Ilse Zaal-Schuller. A book especially intended for parents containing information and tips on how to make good decisions together with doctors.'

What are your next steps in pediatric palliative care?

'I would like to reach a wider audience. After all, making difficult end-of-life decisions is not limited to children alone. But we'd rather not think too much about this until we have to. It often happens that family members suddenly find themselves at a bed in the ICU and do not know what the wishes of their loved ones are in this area. That was never discussed. Of course they know what kind of person their loved one was, so those last wishes still have to be puzzled together. Sometimes things go so fast that there is no time left for that. It is important to think in good time about what you do and do not want in terms of treatment and to discuss this with your loved ones. That is why I am working on a podcast series together with Marion Oskamp and Simon Heijmans. Each episode focuses on one fictional story, such as the one about a newborn baby, a child with an acute neurological problem and an adult with Covid-19. These stories show the dilemmas you can face as a family. During a follow-up episode, we present the relevant story to an experienced doctor. He or she explains how he or she deals with these dilemmas. When I write a scientific article containing the 'dry' results, I often feel that I am not doing justice to the complex reality. I think podcasts do. Every story with accompanying experience is unique. And what is helpful for one person is not for another.'

Measure the effect of training

'Several training courses for healthcare professionals have now been developed based on the extensive research that has been done at home and abroad: training courses for bad news conversations, for advance care planning and for 'deciding together'. I would like to make this more coherent, so that no training courses are developed twice. Doctors and nurses can then see at a glance what is possible. I want to measure the effects of the training sessions. Do they indeed lead to better conversations? And what are they? Is that when everything that needed to be discussed has been discussed? When everyone is happy? Or if differences of opinion have been bridged? We must involve a broad group of parents in these effect studies. So not only highly educated parents or parents who have Dutch as their first language. But also parents who are illiterate, who are struggling financially and who speak little or no Dutch. I turned sixty this year and that feels quite old. In my last working years I want to continue to coach and guide young healthcare professionals. And look for ways to transfer my knowledge and experience to them. Because a lot is already going well, but they can make it even better.'