Kim van Teunenbroek, a PhD student at the Máxima Center from 2019, emphasizes the importance of an integrated approach in pediatric palliative care. This includes not only relief of physical symptoms, but also provision of psychological, social and spiritual support. She explains what this type of care entails: ‘Pediatric palliative care focuses on relieving suffering and improving the quality of life for children with life-threatening or life-limiting conditions and their families throughout the disease trajectory. It begins at the time of diagnosis and becomes increasingly important in the final stages of life. The comprehensive approach contributes to the highest possible quality of life, not only for the child, but also for the family as a whole.’
Recommendations Guideline
During her research, Kim van Teunenbroek developed recommendations based on scientific evidence, clinical expertise and the personal perspectives of families. The guideline is the result of collaboration between many experts in pediatric palliative care from various disciplines and parents of children with life-threatening and life-limiting illnesses. ‘Our recommendations include symptom management, advance care planning, shared decision-making with professionals and parents, psychosocial care, and loss and bereavement counseling,’ she says. The guideline for paediatric palliative care provides guidance to health care professionals to provide appropriate medical, social and emotional support to child and family.
Future developments
According to the PhD student, there are many opportunities for further research and improvement: ‘The great thing of the guideline is that it can offer caregivers and parents support and insight into the options which are available in pediatric palliative care. Since we translated the guideline into English, the recommendations can also be used internationally. However, simply providing recommendations is not enough; it is important to ensure that the recommendations can be used in practice. One way to do this is to provide education and training for caregivers, ensure adequate staffing and funding, and use tools such as an individual care plan which tailors the recommendations to the child and family.’ She concludes: ‘I hope we can use this guideline as a basis for further improvements in pediatric palliative care, both nationally and internationally. There is much more to be done.’