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Pediatric Brain Tumors: Narrating Suffering and End-of-Life Decisionmaking

Published online by Cambridge University Press:  02 June 2020

MARIJE BROUWER ,
ELS MAECKELBERGHE ,
HENK-JAN TEN BRINCKE ,
MARLOES MEULENBEEK-TEN BRINCKE  and
EDUARD VERHAGEN
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Abstract

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.

We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions.

Keywords

sufferingpediatricsend-of-life decisionsoncology
Type
Special Section: Death, Dilemmas, and Decisions
Information
Cambridge Quarterly of Healthcare Ethics , Volume 29 , Issue 3 , July 2020 , pp. 338 - 345
Copyright
© Cambridge University Press 2020

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References

Notes

1. End-of-life decisions are understood here as medical decisions that may have life-limiting consequences; either intentionally (active life-ending), or as an anticipated but not intended effect (such as DNR, withholding or withdrawing treatment, or terminal sedation).

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