On April 21, 2022, the Knowledge Center for Palliative Care for Children organized the symposium 'Cooperation makes stronger! Next Step in Pediatric Palliative Care' in the AFAS Theater in Leusden. After two years of mainly having contact online, it was a joy for many that we could meet live again and make new contacts. With healthcare professionals, but also with experienced parents. With more than 150 visitors, the atmosphere was elated.

Good example leads to good follow

At the start of the symposium, two stars in the field of collaboration within pediatric palliative care were put in the spotlight. Marijke Kars (senior researcher child palliative care at the Julius Center UMC Utrecht) received an Award for her unbridled commitment to research into child palliative care. It is admirable how she conducts research based on the needs of the child and family, in which care providers must also be willing to cooperate.

In addition, director Jacqueline Bouts was also honored for her dedication to young people in guest house and hospice Xenia in Leiden. Jacqueline is an example when it comes to collaboration, in which she advocates having conversations with and not about the patient. A challenge is the smooth transition from child to adult care, which she says is always about working together.

Parents as the focal point

After the festive moment, the plenary part started with a film about Marguerite Gorter-Stam, surgeon and expert by experience. She lost her son Olivier to a very rare disease. Her story showed that cooperation within the palliative phase - from diagnosis to possible death - is essential. The room was silent and palpably moved. Visitor and pediatric nurse Mariës Smit finds the English care inspiring:

“Dr. Craig has an interesting story. In the Netherlands we still have to work hard on a smooth transition from child care to adult care. We need to look at what is possible. What can we do as pediatric nurses?"

After this inspiring story, it was Jennifer Walker's turn, pediatrician and pediatric intensivist at the Wilhelmina Children's Hospital. She shared her knowledge about palliative sedation in children. “The main lesson is that it is not about the depth of sleep, but about getting the symptoms under control for which palliative sedation has been started. A comfortable patient is therefore allowed to wake up a bit in between with palliative sedation,” says Jennifer Walker. Collaboration was also a central theme for Walker. Her message: parents must be included in the whole process at all times and always keep an eye on the child.

Transition from child care to adult care

After a delicious lunch, the afternoon started with a lecture by Dr. Finella Craig, specialist in pediatric palliative care at Great Ormond Street Hospital (London). Dr. Craig discussed the transition from child to adult care. She emphasized that finding a good transition is a collaborative process. It is important to approach the transition positively and to critically examine how and whether the needs of (palliative) child care match adult care. Take an active role, don't wait for the questions to come to you and start planning at an age of, for example, 14 years.

Webinars

At the end of the afternoon, the room split into groups for various interactive webinars. Various cases were discussed here and a lot of knowledge was exchanged. The day ended with a performance by Lisanne Spaander. Speaker, singer and teenager recovered from bone cancer. With her warm voice and story of hope and strength she enchanted the audience. “Everyone has a story and by paying attention to each other's story you can become stronger together,” she said. And with that she also showed that cooperation often revolves around attention and communication. Everyone went home inspired and satisfied.

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