Passion for the profession

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 network coordinator Romy van den Booren. Romy is constantly alert with feelers and eyes on sticks to developments and initiatives within her Network Integral Child Care (NIK) in the Limburg and Southeast Brabant region. She knows better than anyone how to connect people and get to the heart of the matter.

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

'I was in contact with parents whose child, after being very ill for a long time, eventually died. On the surface, the family seemed to be doing well given the circumstances, but when I asked the right questions at the right time, I discovered that there was much more going on behind the scenes. How do you stay in touch with each other, in a relationship where everyone goes through their own grieving process? And what does this do to the little brother, who is suddenly alone? The death of their child left a big hole, especially after years of intensive daily care. That taught me that it is important that it is stated that it is not allowed to go well.

It is a gift when, as a network coordinator, I get the confidence of parents to think along with them about appropriate care. Especially because sometimes I am a stranger to them at first. I experience it as special to be able to walk along with these families.

How did you get into pediatric palliative care?

'In my previous work as a manager at a Children's Center I noticed that connecting with people and paying attention to the other really contributes to an inspiring team dynamic. I had to deal with a lot of different teams and work processes. If there is movement in that and you can continue together after turbulent times, my heart will jump. With the help of a job coach, I came to the conclusion that connecting and being allowed to contribute, especially when major (life) questions come up, fuels my fire. Coincidentally, at that moment I saw the vacancy for network coordinator. I called my predecessor Monique Christophe to find out more about the position and during that conversation I got goosebumps all over my body. That's when I knew this was the job for me.'

'Before I got this job, I didn't know about the Knowledge Center for Palliative Care for Children. Now I am committed to broadening knowledge in this field. In this position my various skills and the knowledge that is in my backpack come into its own. Bringing together, coordinating, seeing opportunities, opening doors and innovating can improve work processes in a network. Thinking outside the box is also really in my DNA.'

What is your next step in pediatric palliative care?

'Strengthening what is already there. We have a very loyal network with active members who also attend all meetings. Sometimes we are physically together with more than fifteen people! I cherish that very much. It not only feels like a professional meeting, but also like a community where we look out for each other. We regularly exchange our experiences about seriously ill children. Then we ask each other how things are going, whether they need anything else and how they feel when they go home. That is important in this profession and in this day and age.

'A good example from practice that ties in with this is one of our training sessions in which people in pediatric palliative care are discussed. This training was co-founded by my predecessor Monique Christophe, grief and loss therapist Tanja van Roosmalen, spiritual caregiver Hans Kling, nurse Marie-José Brounen and pediatric intensivist Monique Engel. In this training, healthcare professionals reflect on a case and how they feel about it. For example, if a doctor is afraid of death or is alert to the manner of death based on his or her own work experience, this can influence the choices or considerations he or she makes. In addition, what happens in a team when a palliative or curative policy is followed is discussed. Can you ask questions about this as a nurse from your own frame of reference? How involved can you be as a doctor? Can you cry? What reactions can you encounter from parents when they have lost control of the situation? And how do you make a connection as a healthcare professional? It is very valuable to share this with each other and wonderful to be able to be open about it in a safe setting. We have organized it twice now, for doctors and nurses. Now we are also going to expand the training to other healthcare professionals!'

Opportunities for improvement in the healthcare landscape

'Furthermore, I continue to collect gaps in care from various disciplines, and to reflect and evaluate them. It is great to be able to seize opportunities for improvement in the care landscape with the network partners and all those involved around a family. Together we make an important contribution to the future.'

'Many professionals are involved in pediatric palliative care. They all look from their own perspective. I experience it as a strength that I can fulfill an objective role from the NIK by placing these glasses next to each other. What have you seen? What can be done better? Where are opportunities? Parents will never forget this care and I am happy to commit myself to that with all the professionals around me! Together we improve the quality of care. And that is important, because in the end you can only do this care right once.'

'Some families seek contact before the death of their child, so that we can support them where necessary during the palliative and palliative-terminal trajectory. This allows the child, for example, with the support of a grief and loss therapist, to say goodbye to people who are important to him or her. In the right place and with words that are appropriate. We can fulfill your last wishes. This is often very valuable for parents afterwards. Parents don't always know where to find the Network Integral Child Care (NIK) for this support, so we as a network are happy to commit ourselves to that.'