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

“That was about six or seven years ago. A girl with a muscle disease was admitted to us. She was chronically ventilated. “My daughter is deteriorating so fast. I do not want this anymore!" her mother called down the hall. Doctors misinterpreted that. They thought that the mother mainly shouted this because she could no longer care for her daughter at home. In doing so, they failed the mother. She was indeed frustrated that she could not arrange care properly, but she also saw that her daughter was getting worse. The doctors saw it differently. Because the girl could still play on her tablet for an hour every day, they thought she still had quality of life. I then realized that it is very important that we, as healthcare professionals, really look closely at children and their parents. Because: what does it say if a child can still play on her tablet? If it is kept alive for the rest with bells and whistles and can no longer do anything, that does not mean that a child is still happy. It is important that we find out whether and how badly a child is suffering.

By talking to the parents, it turned out that it was no longer possible at home. We asked about their wishes. To assess whether there was indeed suffering, we involved a psychologist. She spoke to the girl and assessed the situation. Based on the wishes and possibilities, a plan was made to organize terminal care at home as optimally as possible, with a guideline and various steps. That took quite a lot of feet in the ground. The complex thing was that the girl was being treated at several hospitals, so we had to agree on that together. It was unclear who exactly was responsible for what. Moreover, there was little knowledge. The main practitioner did not have much experience with children requiring palliative care, just like the GP. They thought it was still too early to give morphine and stopped administering it against the parents' wishes, for fear of addiction. Unfortunately, this caused a lot of tension and the last part unfortunately did not go as desired. In the end she died at home.'

How did you get into pediatric palliative care?

'I started my career thirty years ago as a nurse with chronic home respiration. Over the years I started working more and more with children. I get involved when a patient in intensive care can go home on a ventilator. Children who are chronically ventilated at home often have a life-shortening condition. This means that difficult decisions have to be made on a regular basis. Adults take these themselves, for children up to 12 years old, the parents decide. This requires good guidance. Also with teenagers who can make decisions. They often don't want to deal with it (yet). It is also quite strange to talk about a palliative process at that age. Especially when it still seems so far away. Nevertheless, it is important that they also make a well-considered decision. I think along with them about this, for example what it will be like if they no longer want a ventilator, how they can still be separated from their parents with a life-threatening condition or how we can arrange their life at home in such a way that it remains livable for everyone. That requires real contact and depth. Because of my interest in the interaction between people, I increasingly take on this task. So I'm gradually getting into it more and more. Fortunately, people are increasingly recognizing the importance of this guidance. A while ago I joined the Children's Comfort Team Utrecht. As a nurse specialist, I often act on the dividing line of the medical and nursing domains. We are practitioners with a nursing background. The strength of nurse specialists is that they have the knowledge and expertise of both. We can play a good role in chronic care, which often concerns living with a disability and the quality of life. In addition, we are easily approachable. It is important to know what the wishes of the child and parents are and to strive to match the care where possible.'

What are your next steps in pediatric palliative care?

'It is important that we discuss matters at an early stage. For example, when chronic ventilation is no longer useful. Or if the costs of the treatment exceed the benefits. We must be careful that it does not become an extension of suffering instead of an extension of life. It is important that we talk about this at the start of home ventilation: we call it Advance Care Planning (ACP). That still feels like pioneering, while it should actually be standard. And not just in university hospitals. For that, the taboo has to be removed from the subject, although I understand that it is difficult for parents and children to talk about this and to face the fact that there may come a time when your (child) cannot or does not want to continue. Nevertheless, I try to find an opening for these conversations or I refer to a colleague, such as the psychologist, humanistic counselor or someone from my own network. I do think that we should not refer too much. Sometimes people don't want to talk to someone else again. Then it's nice to see what you can do for people yourself. It helps that we work transmurally. I often see patients at the outpatient clinic and I have a lot of contact with home care and the Integral Child Care Networks (NIK) to coordinate care at home. The home nurses are my eyes and ears. And if necessary I can also make home visits. Because sometimes things seem to be going well at the outpatient clinic, but it turns out that it is not at all the case at home.

I see that children with chronic home ventilation are going home faster and younger, partly due to the emergence of new treatment options. I welcome that, but it means that we have to keep a close eye on these children, especially at home, to know how they are. The course of certain disorders also changes due to new developments. For example, the drug for children with spinal muscular atrophy (a muscle disease), which is expected to make them less limp and develop more. This care is complex and many practitioners are involved. Multidisciplinary consultation is therefore important and I prefer to have it with the parents. They also see that we consult and collaborate with parties outside the hospital. In addition, I would like to play an even clearer role in the Children's Comfort Team Utrecht, next to the doctors and nurses. As a starting team, we are still looking for a good division of roles. I hope that together we can show that pediatric palliative care makes sense. That we are not the umpteenth practitioner causing confusion or noise, but support the main practitioner in providing this important form of care.'