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UvA-DARE is a service provided by the library of the University of Amsterdam (https://dare.uva.nl)

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Palliative care in chronic progressive neurological disease

Changing perspectives

Seeber, A.A.

Publication date

2019

Document Version

Other version

License

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Link to publication

Citation for published version (APA):

Seeber, A. A. (2019). Palliative care in chronic progressive neurological disease: Changing

perspectives.

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Palliative Care in ChroniC

Progressive neurologiCal Disease

\\

Changing Perspectives

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© antje anna-luise seeber, 2019

artwork and graphic design by Charlot terhaar sive Droste Printed by ipskamp drukkers

the studies presented in this thesis were funded by the netherlands organization for health research and Development (ZonMw), grant number sj.152.005.

Printing of this thesis was financially supported by the Department of general Practice of the academic Medical Center (aMC), university of amsterdam, and the st. antonius hospital nieuwegein/utrecht. all rights reserved. no part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronically, mechanically, photocopying, recording or otherwise, without the prior written permission of the author.

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aCaDeMisCh ProeFsChriFt ter verkrijging van de graad van doctor

aan de universiteit van amsterdam op gezag van de rector Magnificus

prof. dr. ir. K.i.J. Maex

ten overstaan van een door het College voor Promoties ingestelde commissie, in het openbaar te verdedigen in de agnietenkapel

op vrijdag 7 juni 2019, te 10.00 uur door antje anna-luise seeber

geboren te göttingen

Palliative care in chronic

progressive neurological disease

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ProMotieCoMMissie

Promotores Prof. dr. D.l. Willems aMC-uva Prof. dr. M. de visser aMC-uva Co-promotor Prof. dr. a.J. Pols aMC-uva Overige leden Prof. dr. M. vermeulen aMC-uva

Prof. dr. D. oliver university of Kent Prof. dr. s. van de vathorst aMC-uva

Dr. J.C. reijneveld vrije universiteit amsterdam Prof. dr. F. nollet aMC-uva

Dr. h.r.W. Pasman vrije universiteit amsterdam Faculteit der Geneeskunde

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-Vorfrühling

härte schwand. auf einmal legt sich schonung an der Wiesen aufgedecktes grau.

Kleine Wasser ändern die Betonung. Zärtlichkeiten, ungenau,

greifen nach der erde aus dem raum. Wege gehen weit ins land und zeigens. unvermutet siehst du seines steigens ausdruck in dem leeren Baum. [rainer Maria rilke]

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Chapter One

11

general introDuCtion anD

outline oF the thesis

Chapter Two

29

DisCussions aBout treatMent

restriCtions in ChroniC

neurologiCal Diseases.

a struCtureD revieW

Chapter Three

55

the role oF Palliative Care in

ChroniC Progressive neurologiCal

Diseases – a surveY aMongst neurologists

in the netherlanDs

Chapter Four

77

hoW DutCh neurologists involve FaMilies

oF CritiCallY ill Patients in enD-oF-liFe

Care anD DeCision MaKing

Chapter Five

93

eXPerienCes anD reFleCtions oF Patients

With Motor neuron Disease on BreaKing

the neWs in a tWo tiereD aPPointMent.

a Qualitative stuDY

Chapter Six

117

aDvanCe Care Planning in ChroniC

Progressive neurologiCal Disease.

What We Can learn FroM als.

a Qualitative stuDY

Chapter Seven

141

general DisCussion anD

Future PersPeCtives

Appendices 165

suMMarY

saMenvatting

list oF PuBliCations

PhD PortFolio

aBout the author

DanKWoorD

taBle oF Content

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