In May, Jan Peter Rake joined the Supervisory Board of the Knowledge Center for Palliative Care for Children. In this interview you can read more about his background as a paediatrician and director and he shares his vision on pediatric palliative care.

Jan Peter Rake is a pediatrician by profession and has been working in pediatric palliative care for some time: “Eighteen years ago, after my education and deepening in metabolic diseases at the UMC Groningen (UMCG), I became a general pediatrician at the Martini Hospital in Groningen. . There I also provided care to children with serious multiple care problems and there were also children who needed palliative care. I didn't have much knowledge of it yet, so I went to collect neighborhoods and knowledge from colleagues who had more experience with this at the UMCG. At a certain point, the care for children with serious multiple care problems was increasingly transferred from the Martini Hospital to the UMCG. Then six years ago I followed my patients I prefer to care for and started working at the UMCG again. There I also became an active member of their Children's Comfort Team. ”

Care outside the walls of the hospital
In addition, Jan Peter also worked as a pediatrician for almost 10 years at KinderThuisZorg , an organization that provides pediatric nursing care outside the hospital: “About ten years ago I saw that as pediatricians we were mainly concerned with care within the walls of the hospital, while there is a great deal of out-of-hospital care for children with complex care needs, of which we as paediatricians are insufficiently aware. Also palliative care. For example, the pediatric nurses of KinderThuisZorg ensure that several dozen children can die at home every year. For all care, if possible, it is often better to provide care at home than to do it all in the hospital.”

Amalia Children's Hospital
Jan Peter suspects that this combination of experiences in primary, secondary and tertiary care is one of the reasons why he was asked for his current position: medical director of the Amalia Children's Hospital . One of his assignments is to improve transmural care for children with serious chronic conditions. He is still involved in pediatric palliative care: “I also participate in the Children's Comfort Team in this hospital. In addition, I supervise our emergency room one half day a week. I also like to think along with difficult or special cases. And so I can manage the Amalia Children's Hospital. I like change!"

Ensuring quality together
As medical director, Jan Peter is responsible for the organization and quality of care. For him, the quality of pediatric palliative care is determined by the collaboration between all those involved, including the child and the family: “When I notice that the nurses introduce their patients clearly, we then provide input from all different backgrounds, everyone takes on their task. and provides feedback, and we are just enjoying our work, then I know that the content of the care will be fine. After all, there is so much knowledge and skill. The trick is to put it together. And of course everyone is sometimes sad, frustrated or stressed, but if we are generally doing our work in a cheerful way, then to me that is a sign that the content and the weight of the work can be done.”

You are also a team after working hours
This dynamic of the team is also visible after working hours, says Jan Peter: “For example, our Children's Comfort Team has a secure group app. On Saturday morning a message may come in from a colleague who says that a patient passed away peacefully and that the parents are satisfied with how it went. Colleagues also send messages back. Then you notice that there is a team at work. With people who feel the space to respond to a colleague on a Saturday morning to ask how he or she is doing. For me, that is an important indicator of a well-functioning team. And that's where the care comes in."

“Comfort care has taught me how important it is to step outside the medical domain”
Jan Peter has a clear vision of what is important in pediatric palliative care: “I found that early on in my career   the quality of life of children with serious complex disorders and their families is not determined by which pill we as a doctor prescribe, but by everything we identify in addition to the disease or disorder and what we can do about it. Of course it's nice if a pill makes a child a little bit better or eases the pain, but in the end it's about 'normal' life being able to continue as much as possible. That a child can go to a school, that the parents can continue to function as parents as much as possible and that they can handle the stress and that there is room to go to the playground with the brothers and sisters. That's why I like comfort care so much: all areas of life are covered. Comfort care has taught me how important it is to step outside the medical domain. Also for children who are not palliative, but have a chronic condition. We can make a difference by working across all those living areas.”

Well-arranged care throughout the Netherlands
Jan Peter about his role as a supervisor at the Knowledge Center for Palliative Care for Children: “I am honored to be able to fill this chair on the Supervisory Board of the Dutch Pediatric Association. The Knowledge Center has done, set up and started a lot of good things in recent years. I think it is one of my important roles as a supervisor to signal whether all activities of the Knowledge Center are properly implemented and safeguarded throughout the Netherlands. The Knowledge Center is at the forefront, but the country and all systems are not always able to keep up with all innovations. Pediatric palliative care must be well organized 'through all the walls' everywhere in the Netherlands.”