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

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.

Errataetall:

CommentIn: Camb Q Healthc Ethics. 2020 Jul;29(3):346-353. - PMID 32484145

Medienart:

E-Artikel

Erscheinungsjahr:

2020

Erschienen:

2020

Enthalten in:

Zur Gesamtaufnahme - volume:29

Enthalten in:

Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees - 29(2020), 3 vom: 01. Juli, Seite 338-345

Sprache:

Englisch

Beteiligte Personen:

Brouwer, Marije [VerfasserIn]
Maeckelberghe, Els [VerfasserIn]
Brincke, Henk-Jan Ten [VerfasserIn]
Meulenbeek-Ten Brincke, Marloes [VerfasserIn]
Verhagen, Eduard [VerfasserIn]

Links:

Volltext

Themen:

End-of-life decisions
Journal Article
Oncology
Pediatrics
Suffering

Anmerkungen:

Date Completed 25.11.2021

Date Revised 25.11.2021

published: Print

CommentIn: Camb Q Healthc Ethics. 2020 Jul;29(3):346-353. - PMID 32484145

Citation Status MEDLINE

doi:

10.1017/S0963180120000055

funding:

Förderinstitution / Projekttitel:

PPN (Katalog-ID):

NLM310644577