University of Groningen
At the boundaries of life Brouwer, Marije
DOI:
10.33612/diss.159020586
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Publication date: 2021
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Brouwer, M. (2021). At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1-12 years). University of Groningen. https://doi.org/10.33612/diss.159020586
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AT THE BOUNDARIES OF LIFE
Suffering and decision-making in children with
life-threatening conditions (1-12 years)
The research in this thesis was funded by the Dutch Ministry of Health, Welfare and Sport, and the University Medical Center Groningen (UMCG). A part of the research was funded by the Anna Dorothea Hingst stichting.
The printing of this thesis was financially supported by: Research institute SHARE
University Medical Center Groningen (UMCG) University of Groningen (RUG)
At the Boundaries of Life.
Suffering and decision-making in children with life-threatening conditions (1-12 years) Marije Aafke Brouwer
Thesis, University of Groningen, Groningen, the Netherlands.
© 2020, M.A. Brouwer
All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means without prior written permission of the author.
Cover drawing: Jinthe Mart Brouwer
Cover design and lay-out: Marije Aafke Brouwer Printing: Ridderprint | www.ridderprint.nl
At the boundaries of life.
Suffering and decision-making in children with life-threatening
conditions (1-12 years)
Proefschrift
ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen
op gezag van de
rector magnificus prof. dr. C. Wijmenga en volgens besluit van het College voor Promoties.
De openbare verdediging zal plaatsvinden op woensdag 3 maart 2021 om 14.30 uur
door
Marije Brouwer
geboren op 1 april 1989 te Zuidhorn
Promotores
Prof. dr. A.A.E. Verhagen Dr. E.L.M. Maeckelberghe
Beoordelingscommissie Prof. dr. A.K.L. Reyners Prof. dr. C.J.W. Leget Prof. dr. W.J.E. Tissing
TABLE OF CONTENTS
CHAPTER 1 Introduction 7
PART I. The context of care and decision-making
CHAPTER 2 Should pediatric euthanasia be legalized? 31
CHAPTER 3 Quality of Living and Dying: Pediatric Palliative Care and End-of-Life
Decisions in the Netherlands 43
CHAPTER 4 Trisomy 18, how lethal is lethal? 59
PART II. What is good care?
CHAPTER 5 Barriers in care for children with life-threatening conditions: a qualitative
interview study in the Netherlands 71
CHAPTER 6 Breaking Bad News: What Parents Would like You to Know 99
PART III. Suffering
CHAPTER 7 Suffering in young children with life-threatening conditions: when a
child stops being a child. 125
PART IV. Decision-making
CHAPTER 8 Pediatric Brain Tumors: Narrating Suffering and End-of-Life
Decision-Making 155
CHAPTER 9 Between relieving suffering and ending life: a qualitative analysis of
end-of-life decisions in children aged 1 to 12 years in the Netherlands 171
CHAPTER 10 General discussion 193
APPENDIX Summary 231
Nederlandse samenvatting 239
Dankwoord 245
Publications and conferences 249
