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Attention and cooperation for palliative care in children

Today is World Hospice and Palliative Care Day. Within the Wilhelmina Children's Hospital (WKZ) and the Princess Máxima Center, the professionals of the Kinder Comfort Team Utrecht have an important task before and during the palliative phase. Erna Michiels: "Parents, general practitioners and pediatric oncologists are increasingly using our contribution in children’s palliative care."
Erna Michiels is a pediatric oncologist at the Máxima and coordinator of the Máxima section of the Kinder Comfort Team Utrecht, a team with specialists who assist in palliative care for children. Marijke Kars is an assistant professor at the University Medical Center Utrecht (UMCU) and first worked as a child nurse and now as a researcher in child palliative care. Jurrianne Fahner is a pediatrician in training and a junior researcher in child palliative care at the Julius Center, UMCU. Frédérique van Berkenstijn works as a pediatrician-pediatric neurologist and medical head of clinical care at the UMCU / WKZ and is the driving force behind the WKZ part of the KCTU.

Marijke: “There are only a few children who die in a hospice. The parents prefer their child in a hospital or at home. Communication is very important. In the past, parents had to guide their child towards the end of life, while they also had to deal with the loss themselves. It often resulted in late intervention in symptoms and pain in the final phase. People were dependent on the capacities of the general practitioner and caregivers at home Today we have the Kinder Comfort Teams (KCTs), which take responsibility for the continuity and quality of care. From the clinic we are explicitly involved in the final phase. There is more cooperation to ensure that it works out well at all levels. "

Warm transfer
Erna: “The doctor sees only one child who dies as a result of cancer during his entire career and has no education or experience in this but is in the lead in palliative care. We therefore place the emphasis on a warm transfer. We complete an individual care plan and ensure a personal transfer. The social, psychosocial and spiritual ideas of the people are described therein. But also, what type of disorder, and what problems it can cause, and important telephone numbers. We make a plan with the most common scenarios. We then reserve a corner in the cupboard at the parents' home, containing all possible medicines and materials.”

Erna: “The KCTU consists of three specialists in Máxima, and six specialists in WKZ. In Máxima we have five nurses in Máxima with nine hours a week, and in WKZ five nurses with two hours. And there are also psychosocial employees, pedagogical employees, spiritual care, aftercare for all forms, pharmacy and, for example, someone from the school.”
Frédérique: “Doctors have to get used to the idea of a team that can help them. At the WKZ we were used to do it ourselves. Pediatric oncologists have been seeing dying patients for twenty years. You have to have the courage to decide that you should allow help instead of doing it yourself. "Jurrianne:" The team can support the main practitioner, but you have to be able and willing to find each other. That takes time and still needs to develop, although we already see a difference with the past.”

"On World Hospice and Palliative Care Day, we will continue to work very hard," says Erna: "Last year we arranged some events at the Máxima. This year we are working hard to set up the team, so we will be organizing more next year. “Jurrianne concludes: “KCT Utrecht supports doctors and nurses, relieves them by taking over tasks and giving advice, but the main practitioner remains involved. "

More information: ria@slingerland-advies.nl, project manager Kinder Comfort Team Utrecht.