In Death's Waiting Room

Front matter

Living and Dying with Dementia in a Multicultural Society

AMSTERDAM UNIVERSITY PRESS

In Death’s Waiting Room

Contents

Acknowledgements Preface Introduction

How It All Started

PartI Park House

Part II The Blauwbörgje Case The Nursing Home Doctor’s Husband The Ex-wife

The Nursing Home Doctor 160

The Colleague of the Nursing Home Doctor 165 The Daughter 173 The Managers 177 The Internist 181 The Head Nurse 184 The Journalist 188 Mr Bruggeling IQI The Doctors at De Merenberg 193 The Researcher 197 How It All Ended 202 Notes 203

6 CONTENTS

Acknowledgements

Without the help and the hospitality of the staff, the residents and the visitors at Park House I would not have been able to study the hidden world of the nursing home. I have learned much from them and I am grateful.

I would also like to thank those involved in the Blauwbörgje case who shared their thoughts with me, and the many experts who discussed various aspects of nursing home care with me.

The observations in Park House were part of a study of versterven commissioned by the Dutch Ministry of Health (VWS), the Dutch edition of the book, In de Wachtkamer van de Dood: Leven en Sterven met Dementie in een Verkleurende Samenleving, was made possible by a grant from Het Zonnehuisgroep. I carried out the research and wrote the book while I was a senior research fellow in the Department of Social Medicine and the EMGO Institute at the Free University in Amsterdam. The translation was made possible by a grant from The Netherlands Organisation for Scientific Research (NWO).

I would like to thank Robert Pool for translating the book into English.

Preface

People living in care homes are probably the most vulnerable and least powerful individuals in society. Being dependant on someone else for all your health, social and care needs can result in the individual being silenced and marginalised.

Despite a positive increase in research and practice interest focusing on this area in attempts to provide more positive relationship centred care practices general understandings and knowledge of care home practices remain limited.

What is essential is that the often very difficult and sensitive concerns inherent in providing institutional (and institutionalised) care responses to silenced and vulnerable people should be voiced, debated and given priority. In Death’s Waiting Room is an accessible and detailed account of the experiences of residents, staff and relatives in a care home setting especially in relation to the complex issues and decisions that come with the dying process.

In the telling of sad, distressing and difficult stories Anne-Mei The highlights many key theoretical concerns but in a manner that makes clear the complexity of how such concerns are played out in practice. The presentation of life and death in Park House engages the reader with these lived complexities in ways that are both fascinating and challenging. The reader is drawn into demanding and thought-provoking questions on urgent issues for society and for our own lives.

The book is an essential and stimulating read for all of us trying to improve the lives of residents, relatives and staff in care homes. It is not only about how to understand better the challenges to providing better care but also how to understand and improve the processes and practices of supporting a good death.

Dr Heather Wilkinson Colm Cunningham Centre for Research on Dementia Services Families and Relationships Dementia Services Development Centre Edinburgh University University of Stirling