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Finding a Place Within the Health Care System? a Comparative History of Palliative Care Services and National Policies in England and the Netherlands

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Finding a Place Within the Health Care System? a Comparative History of Palliative Care Services and National Policies in England and the Netherlands Finding a Place within the Health Care System? A Comparative History of Palliative Care Services and National Policies in England and the Netherlands A thesis submitted to the University of Manchester for the degree of Doctor of Philosophy in the Faculty of Biology, Medicine and Health 2017 Aalbertha A H E van Reuler School of Medical Sciences List of Contents List of Contents............................................................................................... 1 List of Abbreviations ....................................................................................... 4 Declaration ..................................................................................................... 8 Copyright Statement ....................................................................................... 9 Acknowledgements ....................................................................................... 10 Chapter 1 Introduction 1.1 Introduction ............................................................................................... 12 1.2 Connections to the Literature ........................................................................ 17 1.3 Aims and Scope of the Study ........................................................................ 29 1.4 Research Approach ...................................................................................... 31 1.5 Plan of the Thesis ........................................................................................ 44 Chapter 2 Palliative Care Services and Policies in England 2.1 Introduction ............................................................................................... 47 2.2 Establishing Modern Hospices ....................................................................... 54 2.3 Expansion and Diversification of Palliative Care Services .................................. 60 2.4 The DHSS and the Desirability of the Establishment of Hospices ........................ 66 2.5 The Wilkes Report and the Growing Number of Hospices .................................. 73 2.6 Public Funding and the Relationship between Independent Providers of Palliative Care and the NHS ........................................................................ 80 2.7 Cancer Policies and Health Care Reforms ........................................................ 90 2.8 Palliative Care and Euthanasia ...................................................................... 99 2.9 Conclusions .............................................................................................. 102 1 Chapter 3 Health Care in the Netherlands 3.1 Introduction ............................................................................................. 105 3.2 Main Institutions and Developments in Dutch Health Care .............................. 105 3.3 Comparing the Dutch and the English Health Care Systems ............................ 114 Chapter 4 Palliative Care in the Netherlands during the 1960s and 1970s: The Role of Nursing Homes and Projects to Improve Care for the Dying 4.1 Introduction ............................................................................................. 119 4.2 Nursing Homes instead of Hospices? ........................................................... 121 4.3 Trying to Obtain Support for Two Projects to Improve Terminal Care ............... 128 4.4 Palliative Care and Euthanasia: Separate Topics ............................................ 136 4.5 Comparative Reflections and Conclusions ..................................................... 142 Chapter 5 Palliative Care in the Netherlands during the 1980s and early 1990s: Caring for the Dying at Home, in Hospices, and in Units in Hospitals, Care Homes and Nursing Homes 5.1 Introduction ............................................................................................. 146 5.2 Establishing and Coordinating Voluntary Palliative Home Care Teams .............. 148 5.3 Extending Professional Home Care Services for the Dying .............................. 153 5.4 Establishing Independent Intramural Services for Palliative Care ..................... 159 5.5 Establishing Specialised Services for Palliative Care in Care Homes, Nursing Homes and Hospitals ............................................................................... 165 5.6 Responses to Developments in Palliative Care by Policymakers, Politicians, and Medical Professionals......................................................................... 171 5.7 Palliative Care and Euthanasia: A Connection Emerges .................................. 177 5.8 Comparative Reflections and Conclusions ..................................................... 181 2 Chapter 6 Palliative Care in the Netherlands from the mid 1990s: Legalising Euthanasia and Striving for Integration into the Health Care System 6.1 Introduction ............................................................................................. 187 6.2 Legalising Euthanasia and Developing a Policy Programme to Facilitate the Development of Palliative Care ................................................................. 191 6.3 Changing Funding for Hospices and Bijna-Thuis-Huizen .................................. 198 6.4 Recent Developments and Current Debates .................................................. 203 6.5 Comparative Reflections and Conclusions ..................................................... 207 Chapter 7 Conclusions 7.1 Introduction ............................................................................................. 213 7.2 Comparative Observations.......................................................................... 213 7.3 Policy Implications ..................................................................................... 218 7.4 Further Research ....................................................................................... 224 Archives ...................................................................................................... 229 Parliamentary Documents .......................................................................... 231 Websites ..................................................................................................... 235 Literature ................................................................................................... 238 Appendix: Post-war Cabinets ...................................................................... 278 Word count (inc. footnotes): 86,139 words. 3 List of Abbreviations England AHA - Area Health Authority CCG - Clinical Commissioning Group CHSC - Central Health Services Council DHA - District Health Authority DHSS - Department of Health and Social Security DH - Department of Health MAC SCC - Medical Advisory Committee Sub-Committee on Cancer MoH - Ministry of Health NCHSPCS - National Council for Hospice and Specialist Palliative Care Services NCPC - National Council for Palliative Care NHS - National Health Service NSCR - National Society for Cancer Relief PbR - Payment by Results PCT - Primary Care Trust RHA - Regional Health Authority RHB - Regional Hospital Board SMAC - Standing Medical Advisory Committee SNMAC - Standing Nursing and Midwifery Advisory Committee SSC - Standing Sub-Committee on Cancer TNA - The National Archives The Netherlands AWBZ - Algemene Wet Bijzondere Ziektekosten Exceptional Medical Expenses Act CHN - Christelijke Hospices Nederland Christian Hospices the Netherlands COPZ - Centra voor Ontwikkeling van Palliatieve Zorg Centres for the Development of Palliative Care COTG - Centraal Orgaan Tarieven Gezondheidszorg National Health Tariffs Authority COZ - Centraal Orgaan Ziekenhuistarieven National Hospital Tariffs Authority CU - ChristenUnie Christian Union CVTM-regeling - Subsidieregeling Coördinatie Vrijwillige Thuiszorg en Mantelzorg Regulation Coordination Voluntary Home Care and Family Care Givers 4 D66 - Democraten 66 Liberal Democratic Party EKR-NL - Stichting Dr. Elisabeth Kübler-Ross Nederland Foundation Dr. Elisabeth Kübler-Ross the Netherlands GR - Gezondheidsraad Health Council KVP - Katholieke Volkspartij Catholic People’s Party KNMG - Koninklijke Nederlandse Maatschappij tot bevordering der Geneeskunst Royal Dutch Medical Association LPF - Lijst Pim Fortuyn List Pim Fortuyn NCCZ - Nationale Commissie Chronisch Zieken National Commission on the Chronically Ill NHB - Nederlandse Hospice Beweging Dutch Hospice Movement NIVEL - Nederlands instituut voor onderzoek van de gezondheidszorg Netherlands Institute for Health Services Research NIZW - Nederlands Instituut voor Zorg en Welzijn Dutch Institute for Care and Wellbeing NPTN - Netwerk Palliatieve zorg voor Terminale patiënten Nederland Dutch Network Palliative Care for Terminally ill patients NRV - Nationale Raad voor de Volksgezondheid National Health Council NVVZ - Nederlandse Vereniging voor Verpleeghuiszorg Pgb - Persoonsgebonden budget Personal health budget PIH - Projectgroep Integratie Hospicezorg Project Group Integration Hospice Care PPZ - Platform Palliatieve Zorg Platform Palliative Care PvdA - Partij van de Arbeid Labour Party PVV - Partij Voor de Vrijheid Party for Freedom SCP - Sociaal en Cultureel Planbureau The Netherlands Institute for Social Research SLSTZ - Stichting Landelijke Samenwerking Terminale Zorg Foundation National Cooperation in Terminal Care TK - Tweede Kamer der Staten-Generaal Lower House of Parliament VHN - Vrijwilligers Hospicezorg Nederland Volunteers Hospice Care the Netherlands VPTZ - Vrijwilligers Palliatieve Terminale Zorg Nederland Volunteers
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