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

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

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.

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

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 Palliative Terminal Care the Netherlands VoMil - Ministerie van Volksgezondheid en Milieuhygiëne Ministry of Health and Environment VTZ - Stichting Vrijwilligers Terminale Zorg Foundation Volunteers in Terminal Care VVD - Volkspartij voor Vrijheid en Democratie

People’s Party for Freedom and Democracy VWS - Ministerie van Volksgezondheid, Welzijn en Sport Ministry of Health, Welfare and Sport Wlz - Wet langdurige zorg Long-term care act Wmo - Wet maatschappelijke ondersteuning Social support act WVC - Ministerie van Welzijn, Volksgezondheid en Cultuur Ministry of Welfare, Health and Cultural Affairs ZFR - Ziekenfondsraad Health Insurance Council ZFW - Ziekenfondswet Sickness Fund Act Zvw - Zorgverzekeringswet Health Insurance Act ZZP - Zorgzwaartepakket Care Intensity Package

Other

EAPC - European Association of Palliative Care OECD - Organisation for Economic Co-operation and Development GP - General Practitioner MP - Member of Parliament WHO - World Health Organization

The University of Manchester Doctor of Philosophy - 26 December 2016 Aalbertha Antonia Hendrika Elisabeth van Reuler Finding a Place within the Health Care System? A Comparative History of Palliative Care Services and National Policies in England and the Netherlands

A comparative history of the development of palliative care services and policies in England and the Netherlands during the post-war period is presented in this thesis. These countries were chosen as England is the country where the modern hospice movement started, whereas a different set of services developed in the Netherlands. Examples of questions addressed are why the service developments in these two countries differed substantially and how specialist services for the dying related to the health care system. Given the choice to study England and the Netherlands, attention had to be paid to the impact of the acceptance or rejection of euthanasia on the development of palliative care as well. Chapter 1 provides an overview of the thesis and its aims. It also includes a literature review and elaborates on the comparative research approach chosen. Chapter 2 discusses the development of palliative care services and policies in England. The main topics addressed are the establishment, expansion, and diversification of palliative care services by the voluntary sector and the governmental policies that led to an increasingly close connection between these voluntary organisations and the National Health Service. Chapter 3 is an intermezzo that discusses the main characteristics and developments of the health care system in the Netherlands. Chapter 4 considers the role of nursing homes in the development of palliative care in the Netherlands. It is concluded that these institutions cannot be considered the equivalent of the English hospices. Moreover, two projects to improve care for the dying and their attempts to obtain public funding are discussed. Chapter 5 focuses on various models for specialised services for the dying that were developed in the Netherlands during the 1980s and early 1990s. Major differences with the English hospice based model of palliative care existed as volunteers had a central role in providing palliative care in the Netherlands. Moreover, the Dutch government aimed to develop palliative care as a generalism rather than the specialism that it became in England. Chapter 6 covers the period from the mid 1990s to the present. The policy programme that the Dutch government initiated because of the imminent legalisation of euthanasia, and its impact on palliative care are the main topics. Conclusions, illustrations of the policy relevance of these histories, and suggestions for further research are presented in the final chapter.

Declaration

No portion of the work referred to in the thesis has been submitted in support of an application for another degree or qualification of this or any other university or other institute of learning.

i. The author of this thesis (including any appendices and/or schedules to this thesis) owns certain copyright or related rights in it (the “Copyright”) and s/he has given The University of Manchester certain rights to use such Copyright, including for administrative purposes. ii. Copies of this thesis, either in full or in extracts and whether in hard or electronic copy, may be made only in accordance with the Copyright, Designs and Patents Act 1988 (as amended) and regulations issued under it or, where appropriate, in accordance with licensing agreements which the University has from time to time. This page must form part of any such copies made. iii. The ownership of certain Copyright, patents, designs, trademarks and other intellectual property (the “Intellectual Property”) and any reproductions of copyright works in the thesis, for example graphs and tables (“Reproductions”), which may be described in this thesis, may not be owned by the author and may be owned by third parties. Such Intellectual Property and Reproductions cannot and must not be made available for use without the prior written permission of the owner(s) of the relevant Intellectual Property and/or Reproductions. iv. Further information on the conditions under which disclosure, publication and commercialisation of this thesis, the Copyright and any Intellectual Property and/or Reproductions described init may take place is available in the University IP Policy (see http://documents.manchester.ac.uk/DocuInfo.aspx?DocID=24420), in any relevant Thesis restriction declarations deposited in the University Library, The University Library’s regulations (see http://www.library.manchester.ac.uk/about/regulations/) and in The University’s policy on Presentation of Theses.

Acknowledgements

Why didn’t I just give it up? It was obviously doing me no good at all. This was the line my thoughts always took and when they got to that point I would remind myself again that I was doing what I wanted to do, I was doing what I had chosen to do. This alone made me luckier than nine-tenths of the population. And a little hardship, a little discomfort - it would go eventually.1

Although writing a thesis is often considered a very individual path, it is hardly ever written in complete isolation. This thesis is no exception, and I would like to express my gratitude to those who supported the work that resulted in this thesis or contributed to my development along the way.

Firstly, I want to thank those who supervised my research. I would not have started a PhD at the University of Manchester without the support of John Pickstone. Although his official retirement was expected in the not too distant future when we were writing the grant proposal for this project, he wrote ‘but will continue to supervise’ when he was asked to provide the expected date of termination of his appointment on the application form. That was exactly what John did. The note he did put on the door of his office during the week in which he was formally retiring, referring to the French proverb ‘plus ça change, plus c'est la même chose’, was definitely applicable to the supervision provided. Therefore, we never considered that he would not be able to see the thesis finished… Shortly after John’s unexpected and untimely death, one of my friends mentioned that at the very least I had had the benefit of knowing him. Although this may be true, the conversations with John about the thesis, history and policy, the hills and all the other topics that could emerge when talking are still greatly missed. As time progressed, Carsten Timmermann got more closely involved in this project and he is to be thanked for not loosing faith and his willingness to support me in whatever way and at whatever moment I thought most beneficial. I know that the whole trajectory has not been plain sailing, and I can imagine it was an inheritance you would rather have renounced, but I am very pleased you did not.

1 Twigger, 1999, p.151-152.

This project also benefited from interactions with people in the wider academic community. At the Centre for the History of Science, Technology and Medicine (CHSTM) in Manchester these were the people who inhabited the PhD-office, and those who shared my interest in the contemporary history of the National Health Service and cancer, particularly Stephanie Snow and Elizabeth Toon. Val Harrington left CHSTM during my PhD, but remained interested and always available for a chat. Niki Vermeulen understood my Dutch perspective on the peculiarities of life in British academia better than anybody else. The walks and drinks were enjoyable and the advice given much appreciated. Elsewhere, I received more useful comments on conference presentations and papers than I am able to recount. However, I am grateful to all who took the effort to attend these sessions. In the same vein, Summer Schools at, for instance, the University of Bergen and Royal Holloway were an important source of feedback and inspiration. Last but certainly not least in this category, I want to express my appreciation for all the busy bees working behind the scenes of academia. Without numerous librarians and archivists in England and the Netherlands, and the ‘Interlibrary loan ladies’ at the University of Manchester Library, my work would not have been possible.

Thanks are also due to the people and organisations that enabled me to pursue my varied interests throughout my studies since leaving secondary school. They include my parents, and the organisations that offered me bursaries to follow the MSc in History of Science, Technology and Medicine at CHSTM after my Dutch studies. More recently, it was the Wellcome Trust that provided me with the opportunity to conduct doctoral research on a topic of my own choice.

Finally, family and friends - in England and the Netherlands - have been essential for support and fun. The closer people are to you, the more likely they are to bear the brunt of discontent when things are not going as wished for. Papa, mama, Lot and Veer, thanks for keeping up with me at those times and everything else - of course. I hope that the memories of our trips to Hadrian’s Wall, the Olympics, and the Lakes - to name but a few - make up for the many ‘normal things’ we missed out on during my time in the UK.

Chapter 1

Introduction

1.1 Introduction

The Study

This is a thesis about the provision of palliative care in England and the Netherlands during the post-war period. Its focus is on the emergence of services, such as hospices, that specifically aimed to care for dying patients and how policymakers reacted to these services. A study of these two countries is of interest, because England is generally seen as the country where the cradle of modern palliative care2 stood, whereas it is often stated that palliative care developed late in the Netherlands. When making such claims about the Netherlands, commentators frequently refer to the late emergence of hospices and attribute the lack of such institutions to the acceptance of euthanasia. This thesis will show that euthanasia was a factor that influenced the development of palliative care in the Netherlands. However, other factors, such as the existence of nursing homes, existing health policies, and decisions taken by the people pioneering specialist, intramural provision for the dying were at least as influential if one wants to explain why the service provision for palliative care in the Netherlands differed from the situation in England. Since the development of palliative care is an issue still on the policy agenda in both countries studied, it is envisaged that this study will not only contribute to historical scholarship, but will also be able to inform policy.

2 I use the terms modern hospices and palliative care in this thesis to distinguish the hospices and related services that emerged from the late 1960s from the care provided in earlier institutions that cared for the dying. It is conventional to date the beginning of the ‘modern’ hospice movement to the opening of St. Christopher’s Hospice. The major difference with earlier homes for the dying was that St. Christopher’s Hospice was based on the academic model of integrating care, research and teaching (Clark, 2000; Cooter, 2003; Lewis, 2007). See Section 2.1 for more information on the earlier hospices.

Key Concepts: Palliative Care and Policy

As mentioned before, services and policies for palliative care in England and the Netherlands are the topic of this thesis. The term palliative care requires further unpacking, because this term is somewhat problematic when used in the context of health policies. Firstly, the vocabulary used to refer to the care for those in the last stages of their lives due to a life threatening disease has changed significantly over time. The term ‘chronic’ was, for example, closely connected to and sometimes used interchangeably with ‘incurable’ in the nineteenth century. Incurability gained its meaning as the late stage of a disease with little recovery prospects around the turn of the twentieth century.3 From the 1960s onward, new concepts such as terminal care, hospice care, and palliative care emerged. A relatively new, English variation is ‘end of life care’. Although some of these concepts succeeded each other in time, they have their own connotations and their usage differs between Europe and North America.4 End of life care, for example, was introduced to broaden the debates to include also the care for people who were reaching the end of their lives, but were not suffering from cancer.5 The Dutch terminology is generally a direct derivative of the English concepts, but the term ‘palliatieve terminale zorg’, which literately translates as palliative terminal care, has been prominent in the political and public debates. Although this might appear to be a tautology from a British perspective, this combination was introduced deliberately to stress that palliative care could also be provided to people who were nearing the end of their lives without having reached the terminal stage of their illness.6 For reasons of readability, I decided to use the terms ‘palliative care’ and ‘care for the dying’ to refer to the services developed to cater for patients during the last stages of their life due to a life threatening disease. However, when dealing with specific initiatives actors’ terms will be used.

The first subsection might have raised the question what health care policy subfields are, and more generally how policy will be conceptualised in this text. Dye’s definition that policy is ‘what governments do, why they do it, and what difference it makes’

3 Abel, 2013; Stolberg, 2007; Stolberg, 2011; Szabo, 2009. 4 See for example: Ashby, 2009; Byock, 1998; Fallon & Smyth, 2008; Freidemann & Jaspers, 2003; James, 1994, p.113; Lamers, 2002; McGrew, 2003; Meghani, 2004; Syme & Bruce, 2009. 5 Department of Health, 2008b. 6 Dols, 2001.

13 obtained the status of standard definition in the field.7 Despite being limited in terms as specifying only governments as actors making policy, this definition might leave the researcher with the feeling that an ‘elephant test’ has to be passed. Policy - like an elephant - might be hard to describe, but can be instantly recognisable when encountered. Policy is also analogous to an elephant in the way presented by the parable from the Indian subcontinent. Several blind men are asked to describe an elephant. After each of them felt part of the animal, they all provide different descriptions of a part of the animal. Consequentially, they present a fragmented picture of the animal. Similarly, various aspects of policy can be investigated without necessarily taking into account the complete ‘policy animal’. Hogwood & Gunn, for example, list the different uses of the word ‘policy’ and present no less than ten categories. These range from policy as a process to policy as an expression of general purpose or desired state of affairs and from policy as a governmental decision to policy as outcome.8 In this thesis, I primarily use the term ‘policy’ to refer to decisions and plans made by the national government. However, I also apply the concept in a broader and more inclusive sense. Hence, in addition to governments and their policy plans, we will come across other relevant advisory committees, organisations and persons that made decisions and developed initiatives that aimed to have an impact on discussions about the provision of palliative care at a national level. The term ‘health care subfield specific policies’ is used to refer to policies that focus on a defined part of the health care service. They can be defined by a certain disease, such as cancer, heart disease or diabetes, but also by patient groups, like patients in the last stages of their lives. All health care subfield specific policies operate in the context of more encompassing, general health care policies. The health care subfield studied in this thesis is palliative care.

7 Dye, 1975, p.1. See for more elaborate discussions of the concept of policy: Cairney, 2012, pp.23-26; Howlett, Ramesh & Perl, 2009, pp.4-7; Howlett, 2011, pp.15-19; Parsons, 1995, pp.xv-xvi. 8 Hogwood & Gunn, 1985, pp.13-19. The other categories included are: policy as a label for a field of activity (for example, social or foreign policy), policy as specific proposals, policy as formal authorisation, policy as a programme, policy as output, and policy as a theory or model.

Selecting England and the Netherlands

Not much has been written on the selection of appropriate cases for a comparative historical study. According to Pernau neither a comparison between cases that are too similar nor between cases that share no or only a very limited number of characteristics makes sense. According to this author, the most important criterion for selecting countries for comparison is whether they can be classified under a common umbrella category, the ‘tertium comparationis’, with regard to which the countries can be compared.9 In this study, the development of palliative care services and policies are this ‘tertium comparationis’. Both countries developed such services and policies and in both cases this happened in a context of relative affluence and health care systems with (near) universal access. Moreover, both countries are nowadays counted among the countries with good palliative care. In 2003, the European Association for Palliative Care established a Task Force on the Development of Palliative Care in Europe. The studies conducted by or on behalf of this Task Force aimed to map the development of palliative care in various countries. These studies consistently rate the United Kingdom as the country with most palliative care resources available to patients10 and the home of the most vital palliative care movement.11 The Netherlands, although not as developed as the United Kingdom, generally occupies at least a top-5 position on such European lists.12 Another study surveyed the worldwide development of palliative care and applied a developmental model with four stages of palliative care development. The four groups were: countries without known palliative care activity; countries in which capacity building activity takes place, but no service availability; countries with localised provision of palliative care; countries where palliative care activities are approaching integration with the wider health system. Among the circa 15 percent of the 234 countries included in this study that fall within the fourth category are the United Kingdom as well as the Netherlands. Capacity building and localised activities take place in these countries, but also criteria such as a broad awareness of palliative care,

9 Pernau, 2011, p.30. 10 Measured by indicators such as the availability of hospital units, support teams, home care teams, specialised beds and full time physicians. 11 Indicators are, for example, the existence of a national palliative care association and attendance at EAPC conferences. 12 Centeno, Clark, Lynch, Rocafort, Praill, liana de Lima, Greenwood, Flores, Brasch & Giordano, 2007; Woitha, Garralda, Martin-Moreno, Clark & Centeno, 2016.

15 the existence of a national association for palliative care, and the availability of a range of providers and service types are satisfied.13 In a worldwide study using more than 20 indicators to rate the quality of death per country, the United Kingdom and the Netherlands occupied the first and the eighth position in 2015.14 However, these data do not explain why one would want to look at England and the Netherlands and not at, for instance, France or Norway. In addition to pragmatic reasons such as the researcher’s linguistic abilities to guarantee access to primary sources and knowledge about the health care systems in these countries, substantive reasons exist. Although both countries currently provide good palliative care, the types of organisations providing this care and the role of governmental policy in these developments differed. Moreover, the differences in the development of palliative care services and policies were partly contingent on the structure and the development of the respective health care systems and broader social developments. An example of such developments often referred to is the acceptance of euthanasia in the Netherlands. As mentioned before, England is the country where modern palliative care originated. Its hospices became an important source of inspiration for other people who wanted to improve care for the dying. Therefore, a comparison of the developments in these two countries can help us to understand why the palliative care services in the Netherlands deviated from the ‘English model of palliative care services’, but als manage to ensure a high quality of death.

Overview of the Chapter

This introductory chapter proceeds as follows. In the next section, the state of the literature which is relevant to this thesis is reviewed. In Section 1.3, a discussion of the aims of the thesis is provided and some comments about the scope of the study will be made. The research approach applied in this thesis is the topic of Section 1.4. Examples of topics covered in that section are the specificities of writing contemporary history and transnational history. In the final section, a plan of the thesis is presented.

13 Wright, Wood, Lynch & Clark, 2006. 14 Economist Intelligence Unit, 2015.

1.2 Connections to the Literature

Introduction

As indicated in Section 1.1, this thesis wants to present the histories of palliative care services and policies in England and the Netherlands. As a consequence the thesis relates to a range of academic literatures. Within the field of history the most relevant branches of literature are the scholarship dealing with the history of palliative care and policy history. However, comparing health services and policies is also connected to policy studies and comparative health systems research. The relation between the study reported in this thesis and these three (sub)fields will be discussed in this section. Additionally, the relevance of history for policy will be considered in the final subsection.

Historical Scholarship on Palliative Care

In her book on care for dying patients in America, Abel concludes that care for the dying has traditionally occupied a position at the margins of the history of medicine.15 Indeed, the historical literature for this subfield is not as rich as for many other topics, but if the recent books by, for example, Lewis and Stolberg are anything to go by, care for the dying might start to become a less unusual topic for research.16 Additionally, the history of death has also been written about by authors who might not - primarily - identify as historians of medicine.17 If we look more specifically for literature on the history of modern palliative care services, we can see that this topic has attracted only a limited amount of attention from historians in most countries.18 Accounts of the development of palliative care are

15 Abel, 2013, p.166. 16 Lewis, 2007; Stolberg, 2011. 17 See for example: Ariès, 1981; Clark, 2016; Jalland, 1996; Jalland, 2010; Kellehear, 2007; Mortimer, 2009; Strange, 2009. For a review of the historical scholarship on death, see: Strange, 2011. 18 The most notable exception to this claim is the United States. See for example: Abel, 1986; Buck, 2004; Buck, 2007b; Buck, 2007a; Buck, 2009; Buck, 2014. Lewis’ book has a chapter on the development of services in the United Kingdom and the transfer of these ideas to the United States, Australia, Canada and New Zealand (Lewis, 2007, pp.121-158). Stolberg includes service

17 often provided as background information to other analyses19 or written by people who were directly involved in the developments described.20 This first type generally results in accounts that merely address the major points of the development such as the establishment of the first hospice or policy document in a country. Publications of the latter type are often fairly narrow accounts, which focus on progress and achievements. Most of the literature on the development of palliative care services in England is produced by authors associated with the International Observatory on End of Life Care.21 A significant proportion of this work has been based on oral histories and the archives of Cicely Saunders, one of the pioneers of the modern hospice movement. Articles are generally published in medical or social science journals rather than mainstream history or history of medicine journals. From the perspective of the historian, the time span included in the majority of these publications is relatively short and the focus lies often on individual persons and organisations providing palliative care rather than on more integrative and contextualised accounts.22 Nevertheless, this body of literature ensures that most developments related to palliative care services in England have been recorded. Also issues such as the role of pain management in establishing the social and medical relevance of hospices have been described.23 The same holds with regard to palliative care becoming a medical speciality and the changing relevance of religion as a central aspect of the identity of

development in Germany in the context of a geographically more extensive chapter on the development of palliative care services during the post-war period, but this is not an extensive analysis of the German case (Stolberg, 2011, pp.233-250). 19 See for example: Bruntink, 2003, pp.15-26; Gronemeyer, Fink, Globisch & Schumann, 2004; Jaspers & Schindler, 2004; Jordan, 2007, pp.39-84; Lazenby, McCorkle & Sulmasy, 2014; Ten Have & Janssens, 2001. 20 See for example: Baar, 1998b; Baar, 1998a; Baines, 2011; Baines, 2012; Doyle, 2005; Lamerton, 1986; Saunders, 1982; Saunders, 1988c; Saunders, 2001. 21 The Observatory was established at Lancaster University in 2003, but the multidisciplinary group of researchers led by David Clark had already started work at the University of Sheffield during the 1990s. 22 For example: Clark, Malson, Small, Mallett, Neale & Heather, 1997; Clark, 1998; Clark & Seymour, 1999; Clark, Small, Wright, Winslow & Hughes, 2005; Winslow & Clark, 2005. In a recent book, Clark integrates the insights from many of these publications into a narrative that covers the period since the nineteenth century (Clark, 2016). However, a tendency to focus on achievements and progress is still present. 23 Graham & Clark, 2005; Meldrum, 2003; Seymour & Clark, 2005; Winslow, Seymour & Clark, 2005.

18 hospices.24 As mentioned before, this study aims to compare the development of services and policies in England, which became the source of inspiration for the improvement of care for the dying worldwide, to the alternative models of palliative care that developed in the Netherlands. Hence, the existing literature on England is rich enough to capture most of the developments related to palliative care services relevant to this thesis. Moreover, given the scope of the thesis it is not likely that a limited amount of additional primary research would result in radically different interpretations. It should be noted, however, that because of the direct connections between the researchers and the people working in palliative care, some of these publications cannot easily be classified as either primary or secondary literature and might fulfil different roles at different points in the empirical chapters.25 Some publications on the development of English policy related to palliative care are available. These articles and book chapters show, for example, how the link between the NHS and palliative care became increasingly tight due to several reforms of the health care system.26 However, the role of governmental policy has not yet been addressed as extensively as service development. Moreover, publications reflecting historically on the first decades of the twenty-first century are still lacking. This explains why some additional research using primary sources such as policy documents and transcripts of parliamentary debates was necessary to fully understand the developments in England.

The availability of secondary literature on the development of palliative care services and policies in England and the Netherlands is imbalanced: far more literature describing the developments in England can be found than can be identified for the Dutch situation. The absence of such literature in not an issue specific for palliative care. History of medicine as a field is overall less established than in England. This results in a limited availability of secondary literature on the history of the health care system as well as on topics such as cancer care and care for the elderly.27 The sparse literature on the history of palliative care in the Netherlands originated in

24 Clark & Seymour, 1999; Clark, 2001; James & Field, 1992; Overy & Tansey, 2013. 25 In this case, this issue is intensified, because some of the authors engaged in historical research as well as (applied) social science research. However, the issue is not unique to the history of palliation and has been commented on by contemporary historians before (Berridge, 1994; Bösch & Danyel, 2012a). 26 Clark, Malson, Small, Mallett, Neale & Heather, 1997; Clark & Seymour, 1999; Mathew, Cowley, Bliss & Thistlewood, 2003. 27 Bakker & Van Overbeeke, 2014, p.10.

19 the context of the Pallium Project, which mapped the development of palliative care in seven European Countries and took place between 1998 and 2001.28 Based on this work, Janssens and Ten Have conclude that the history of palliative care in the Netherlands is a field that is a matter of dispute.29 The disagreement mainly relates to the origin of specialist palliative care. Did the development of palliative care in the Netherlands start with the establishment of nursing homes in the late 1960s or should the establishment of institutions focusing solely on the provision of palliative care during the 1990s count as the starting point? The viewpoints defended in this controversy were often directly related to the position occupied by the persons involved.30 As a consequence of the limited availability of academic publications on the history of palliative care services and policies in the Netherlands, it was necessary to base the chapters on the developments in the Netherlands on primary sources. Further information on selection of sources used is provided in Section 1.4. When writing about care for the dying in England and the Netherlands the topic of euthanasia cannot be ignored. In addition to shelves full of books considering this issue from an ethical, legal, or theological perspective, several historically oriented studies on the social history of euthanasia, the process of legal change, political debates, and the role of medical doctors in the Netherlands have been published.31 However, contrary to countries like Britain, the United States, and Germany, a history of ‘the euthanasia movement’ has yet to be written for the Netherlands.32 The lack of integration between the historical literatures on palliation and euthanasia is notable. Although not the primary focus of this thesis, I will provide an exploration of the interactions between these two developments - especially in the Netherlands - that goes beyond the bold claims that are sometimes made about the presumed late development of palliative care and the demand for euthanasia in the Netherlands.33 The secondary literature already available on the euthanasia debate in the Netherlands is extensive enough to provide an overview of the main developments related to the

28 Clark, Ten Have & Janssens, 2000; Janssens, 2000; Janssens, 2001; Janssens & Ten Have, 2001. 29 The authors identify the history of palliative care as one of five issues on which consensus is lacking. A more elaborate version of this argument is presented in: Janssens & Ten Have, 2001. 30 See for example: Baar, 1999; Baar & Van der Kloot Meijburg, 2002. 31 Griffiths, Bood & Weyers, 1998; Hoogerkamp, 1992; Kennedy, 2002; The, 2009; Weyers, 2004. 32 Benzenhöfer, 2009; Dowbiggin, 2003; Frewer & Eickhoff, 2000; Kemp, 2002. 33 For a clear example see: Hendin, 1997. Other illustrations are included in Section 4.4.

20 social and legal changes. However, to assess the position of people involved in providing specialist palliative care services, primary sources were consulted.

Policy History

Thematically, this history of palliative care services and policies is part of the research conducted under the heading of policy history. Writing histories of policies does not belong to the mainstream interests shared by historians. Some historians even state that the historical study of recent policy constitutes a comparatively neglected area for research.34 Nevertheless, it can nowadays be considered an established subfield in the United States with its own Journal of Policy History, conferences and chairs. However, policy history is less recognisable as a separate subfield in Europe. Although historians have been studying public policy for generations and it is common to refer back to Thucydides as a writer of policy history, policy history as a subfield only emerged in the late 1970s and was closely connected to increasing attention to public history more generally.35 The content of the research carried out in this subfield can broadly be described as studying public policy and government institutions, while integrating these subjects into broader narratives that encompass elements of political, social, and intellectual history.36 This thesis draws on approaches and debates in the subfield of policy history in several ways; the most significant will be discussed below. Firstly, from its inception as a subfield, policy history attracted scholars with different orientations and perspectives, especially with regard to the question whether the studies conducted were primarily to be seen as a scholarly undertaking without necessarily having direct applications outside academia or whether these histories were to be used as a means of informing policymakers.37 Although Zelizer claims that the vision of policy history to contribute to contemporary policy debates has remained largely unfulfilled, he argues that this promise ‘remains alive’ and that opportunities to contribute insights to current society exist.38 The policy implications of this thesis are explored in Section 7.3.

34 Rosenberg, 2006, p.13. 35 Graham, 2011; Grossberg, 1979; Kelley, 1978; Kelley, 1988a; Kelley, 1988b. 36 Achenbaum, 1985; Critchlow, 2005, p.vii; Zelizer, 2012, p.1. 37 Critchlow, 2005, p.vii. Examples of such publications are: Mock, 1991; Neustadt, 1982; Neustadt & May, 1986; Rothman & Wheeler, 1981. 38 Zelizer, 2005b.

Secondly, more than history in general, policy history has a multidisciplinary character and has been open to concepts and approaches used in the social sciences. One of the central concepts imported is the policymaking process and its stages such as agenda setting, decision making and implementation. These concepts proved more relevant for structuring historical time when studying policies than traditional classifications, and will be used in this thesis where relevant.39 However, in contrast to the common social science practice of studying a particular stage of the policymaking process, one of the potential strengths of policy history is its ability to offer a more comprehensive picture by making connections between intentions and effects by focusing on long-term policy development. In combination with the fact that historians are more likely to study periods of relative inaction regarding or inattention to a certain policy field than policy scientists, this defines the third characteristic of policy history that will be evident in this thesis. This approach also provides opportunities for the study of unintended consequences, which often only unfold over a long-period of time and hence remain invisible in most formal policy evaluations.40 Critchlow argued that policy history was opening out around the change of the millennium to include a broader range of topics. Whereas early studies were often confined to welfare history, topics like women’s history, foreign relations, and health policy were increasingly attracting attention.41 This thesis fits this trend and aims to add to this field by showing that not only relatively broad histories of health care policies and single case studies of individual policy initiatives are relevant, but that studies of health care policy subfields also provide a fruitful perspective for research. Another contribution to the field of policy history by this thesis is the comparative perspective it offers. Several authors have lamented the lack of comparative investigations - across time and space - within the field of policy history. Hacker, for example, calls the scholarship on social policy ‘remarkably parochial’ and claims that this impedes the development of arguments about topics, like the distribution of influences or the relationship between intentions and outcomes.42 Baldwin commends cross-national comparative policy history as a way to explore how different states have dealt with similar problems.43 A discussion of the benefits and drawbacks of comparative history is included in Section 1.4.

39 Jacobs & Zelizer, 2003; Kelley, 1988a; Zelizer, 2005b; Zelizer, 2012, p.26. 40 Hacker, 2005a. 41 Critchlow, 2005, p.vii. 42 Hacker, 2005a, p.143. 43 Baldwin, 2005a, p.12.

Most of the literature referred to above originated in the USA and deals with developments in that country. However, this does not imply that relevant studies are absent in Europe. If we look specifically at contemporary, historical studies of health policy, we can see that - for Britain - an important impetus was given by the AIDS history project that was conducted at the London School of Hygiene and Tropical Medicine in the 1990s.44 Since that time, several studies related to (British) health policy have been undertaken, but a focus on policies as such is often absent.45 Health care related topics also feature prominently within the series of policy papers published by History & Policy.46 Despite these developments, I would concur with Berridge’s viewpoint that the history of health policy and services is an area of the history of medicine that is in need of development. This holds especially for contemporary history as many British health service histories have concentrated on the interwar years and historians have apparently been reluctant to move to more recent periods.47 As the field of history of medicine is less extensive in the Netherlands than in Britain, the Dutch literature on health policy development is even more limited.48 In 2005, Wolffram identified health policy as one of the areas of policy history that requires further investigation in the Netherlands.49 However, this challenge has not yet been taken up widely and very recent history is lacking in particular. The thesis aspires to contribute to this body of scholarship as well.

Policy Studies

Can this thesis be classified as policy research? The answer to this question depends strongly on the definition of policy research applied. In a classic article, Etzioni states: ‘Policy research is concerned with mapping alternative approaches and with specifying potential differences in the intention, effect, and cost of various programs.’ Policy

44 Berridge & Strong, 1993; Berridge, 1996. 45 For example: Berridge, 1999; Gorsky, 2008; Gorsky, 2013; Sheard, 2010; Snow, 2013. 46 History & Policy was established in 2002 and aims to connect historians, policymakers and journalists. Policy papers disseminate historical research in a format that is easily accesible for policymakers (History & Policy: Homepage. http://www.historyandpolicy.org. Accessed 16 April 2010). 47 Berridge, 2011, p.122&129. 48 Notable exceptions are: Bakker & Van der Velden, 2005; Van der Velden, 1993; Vonk, 2012. 49 Wolffram, 2005.

23 research, which is not to be confused with applied research, differs from basic research in the sense that it is ‘much less abstract, much more closely tied to particular actions to be undertaken or avoided. While basic research aims chiefly to uncover truth, policy research seeks to aid in the solution of fundamental problems and in the advancement of major programs’.50 From this perspective, the thesis is primarily a work of ‘basic research’, but one that may be used as input in policy research. Another well-known classification distinguishes between analysis of policy, analysis for policy, and policy monitoring and evaluation. The first category includes the analysis of policy determination and policy content, while the second encompasses policy advocacy and information for policy. The aim of policy monitoring and evaluation is to assess how policy outcomes compare to the policy goals set.51 In these terms, the research presented in this thesis qualifies as analysis of policy, but again with the potential to inform analysis for policy and certain forms of policy evaluation. Both classifications presented above focus on the (potential) usage of the study to determine whether and what type of policy study a piece of research is. Thematically, it is less debatable whether this thesis is a ‘policy study’ and it aims to contribute to this field in the following ways. Firstly, the historical study of health care subfield specific policies for palliative care provides a window to look into issues like: What is the relationship between the subfield specific policies, general health care policies and broader political developments? Secondly, this study contributes to scholarship at the intersection between history and political science and public administration. Tilly characterises the conjuncture of history and political science as a ‘thinly populated no man’s land’. A no man’s land, however, in which he would welcome company.52 Additionally, Bardach describes policy dynamics as a ‘neglected phenomenon’ within the field of policy studies.53 Indeed, theory development on policy dynamics is still relatively sparse. The idea of a punctuated equilibrium, for instance, is generally seen as a descriptive model instead of a theory. However, the increasing acceptance of the idea that past, time and sequence matter in the study of public policy, since this topic emerged on the research agenda with publications such as The Dynamics of Public Policy and Policy Dynamics provide reason to be more positive about the developments.54 Although this thesis does not intend to contribute to the development

50 Etzioni, 1971, p.8. 51 Parsons, 1995, pp.54-57. 52 Tilly, 2006, p.434. 53 Bardach, 2006, p.337. 54 Baumgartner, Green-Pedersen & Jones, 2006; Baumgartner & Jones, 2002;

24 of theory about policy dynamics per se, it will provide an empirical study of policy dynamics at work.

History and Policy

Why should policymakers pay attention to history? And why should historians be concerned about policy? The following two quotes provide suggestions. The first is from a noted historian of medicine, the second from a physician who was the English Chief Medical Officer from 1998 to 2010.

Policy is always history. Events in the past define the possible and the desirable, set tasks, and define rewards, viable choices, and thus the range of possible outcomes. As we move through time those choices reconfigure themselves and trends may establish themselves - but at any given point the ‘actionable’ options are highly structured. It is the historian’s disciplinary task to define those likelihoods. Most important, what history can and should contribute to the world of policy and politics is its fundamental sense of context and complexity, of the determined and the negotiated.55

I never ever heard a discussion during my twelve years in post - although I tried many times to raise it - where people would sit down and say: ‘Now, have we ever done anything like this before? What tools did we use? What worked well? What didn’t work well and how are we going to take that learning into the change programme that we are now going to introduce?’ People reached for the tools almost absent-mindedly. Say, we’ve got to have a few regional road shows, we’ve got to do some legislation, we’ve got to do this, we’ve got to do that, but not thinking fundamentally about change the way that I believe is done in many of the most innovative organisations in other sectors.56

These quotes illustrate that their authors both maintain that history can be useful for policy, but that their concepts of history and their aims for the use of history differ. Where Rosenberg conceives of history as a method to study the social world and its development over time which may help us to think about the present and future, Donaldson sees history as the past and wants it to contribute to solving current problems. In this subsection, the various claims for the relevance of history for policy that can be found in the literature are discussed. However, before moving on, it might

Baumgartner & Jones, 2009; Breeman, Lowery, Poppelaars, Resodihardjo, Timmermans & De Vries, 2009; Hogwood & Peters, 1983; Howlett & Rayner, 2006; Howlett, 2009; John, Bertelli, Jennings & Bevan, 2013; Pierson, 2004; Pierson, 2005; Rose, 1976; Rose & Davies, 1994; Sabatier, 1999. 55 Rosenberg, 2006, p.28. 56 Donaldson, 2011.

25 be good to clarify the distinction between policy histories and histories that are of use for policy. On the one hand, accounts of the first type describe and analyse, for instance, the decisions that led to a particular policy document or governmental intervention. This does not imply that these histories are always relevant for current policy. On the other hand, policy relevant histories need not be concerned with policy as such, but provide insights of use to policymakers. The case for the use of historical evidence to inform policymaking has been made convincingly.57 The main arguments made to support the added value of historical perspectives for policy are:  A long-term perspective allows for a sense of chronology and the identification of continuity as well as change;  A diachronic attitude supports the identification of slowly developing and temporally distant causes of current problems and might help uncover unintended consequences of policies implemented in the past;  Historical analyses allow for combinations of various types of source material, levels of interpretation, and theoretical perspectives;  Contextualisation of issues under investigation provides insight into a wide range of influences lying behind the immediate issue.58 At a time in which publications in public policy are said to ‘remain present and future oriented, and history-lite’, historical studies emphasise aspects that differ from mainstream policy analyses.59 As such history can provide a way to open up the future by offering additional perspectives. Historians can fulfil this role, because of their distance from the immediate policy arena. Or in Rosenberg’s words: ‘We are spectators at the policy dogfight - and may even lay the odd wager - but at least we don’t own any of the combatants in the pit.’60 These ideas force historians to criticise not only the ‘snapshot’ view that often underpins policy studies, and the lack of institutional memory in the organisations

57 Bayly, Rao, Szreter & Woolcock, 2011; Berridge, 2008; Boele, Van Dixhoorn & Van Houwelingen, 2015; British Academy, 2008; Guldi & Armitage, 2014; Mandelbaum, 1991; Pickstone, 2012; Ramos Pinto & Taithe, 2015; Smith, 2009; Staley, 2007; Vinovskis, 1999; Zelizer, 2000. 58 Berridge & Strong, 1991; Berridge, 1994; Berridge, 2000a; Berridge, 2000b; Berridge, 2008; Berridge, 2010; Hacker, 2005b; May, 1973; Mock, 1991; Neustadt & May, 1986; Pollitt, 2008; Rothman & Wheeler, 1981; Stevens, Rosenberg & Burns, 2006; Tilly, 2006; Zelizer, 2000. 59 Pollitt, 2008, p.13. See also: Raadschelders, 1998; Zelizer, 2000. 60 Rosenberg, 2006, p.29.

26 where policy is made, but also stimulates them to be sceptical about work with a narrow scope in terms of place and time by historians. If we focus on, for example, a single moment of policy choice, this likely does not tell us much about developments over time and it is doubtful whether the outcomes of such research differ much from the ‘snapshots’ found in policy studies.61 The historian’s perspective was paramount in the preceding paragraph. However, policy scientists - though often those with some form of university training in history before moving into policy studies - have also published about incorporating history in policy and decision making. Neustadt & May, for example, make an argument for the functional utility of history in policymaking in their seminal book on incorporating insights from the past into decision-making processes targeted at policymakers. They elaborate on three ways in which policymakers can use history. Firstly, historical analysis can help policymakers to evaluate historical analogies. This should support avoiding decisions that are based on false comparisons with the past. Secondly, predictions about the future can be improved by locating policy decisions in longer ‘time-streams’. Finally, policymakers’ chances of success in negotiations can be improved by historical analysis, because this type of analysis provides a richer explanation of the people, issues and organisations involved in a debate.62 Pollitt brings up various reasons for the neglect of temporal dimensions in public administration and public policy analysis. In addition to the abundance of rational choice theories, he identifies the rise of generic management theories as one of the main causes for the loss of a temporal perspective in public administration and public policy analysis. Pollitt constructs what he calls a ‘time toolkit’ to curate these shortcomings. This toolkit consists of six concepts: paths/ arrows, punctuations/ windows of opportunity, cycles/ alternations/ ‘tacking’, duration, causal mechanisms,

61 Pickstone gives an example of the relevance of comparisons for policy relevant histories in his article on modalities of cancer treatments and their development in the United Kingdom, United States, and Sweden. He concludes by writing: ‘For the present, I hope I have at least raised some key questions about the cognitive and practical relations between modalities in medicine, about the conditions under which they developed differently, and hence about the path dependency of their interactions’ (Pickstone, 2007, p.196). Pickstone stresses that such questions cannot be answered using the methods normally applied to policy analysis. Nevertheless, he also states that finding answers to these questions is currently not the ‘business’ of medical historians when he writes that ‘such explanations require history, albeit of a wider and more comparative form than most historians now produce’ (Pickstone, 2007, p.196). See also: Pierson, 2005, p.35. 62 Neustadt & May, 1986.

27 and multiple ‘times’. As Pollitt summarises, his book shows that ‘strong temporal patterns are present in a great deal of policymaking and public management’. Although these patterns can be summarised as paths/ arrows, punctuations/ windows of opportunity and cycles/ tacking, the mechanisms driving these patterns can not be depicted as easily, because mechanisms can take various shapes and are more numerous than patterns. Therefore, clear and decisive answers may be hard to develop, but researching past developments can be expected to improve not only our knowledge of the past, but also our understanding of present and future possibilities. According to Pollitt, no special set of scholarly methods to research the elements of his toolkit exists and he recommends selecting methods as required. Examples of tools that he deems particularly suitable are constructing basic chronologies, conducting documentary analysis, doing narrative analysis, and constructing statistical time series.63 Pollitt’s book may be placed in a wider trend within political science towards more history conscious accounts. A useful introduction to history and politics is provided by a section in The Oxford Handbook of Contextual Political Analysis entitled ‘History Matters’, in which an overview is given of the reasons why history matters to politics.64 History is included in this handbook as one of nine contextual factors that may play a role in political analysis and is said to provide a way of producing more systematic knowledge of political processes.65 However, positioning history at a par with issues such as culture, place, population and technology, does, in my opinion, not do justice to the central role that temporal processes often play. Therefore, I would prefer a view of history that temporalises all other aspects under investigation over the view of history as a contextual issue.66 The ideas presented in this subsection will inform Section 7.3 in which I discuss the policy implications of this thesis. At this point, however, a final remark may have to be made regarding the optimism about the possibility of connecting history and policymaking that underlies this subsection. This is certainly not meant to deny that historians who attempt to contribute to policymaking may encounter barriers and difficulties. Indeed, economics and law are generally seen as the top dogs in policy

63 Pollitt, 2008. 64 Tilly, 2006. 65 Goodin & Tilly, 2006. 66 Collier and Mazzuca voice a comparable opinion, when they write that: ‘Examples of historical analysis that most convincingly demonstrate that history matters are those that treat history as cause rather than surrounding’ (Collier & Mazzuca, 2006).

28 advice and access to the policy arena might not be gained easily. Certainly, a risk that elements of authors’ works will be presented out of context to support causes they may not be particularly pleased with exists. Moreover, the time scales which the academic historian and the policymaker are used to are difficult to match. However, although I certainly do not want to argue that every historian needs to produce research that has policy relevance, I am convinced that too much is at stake not to be engaged when possibilities present themselves or can be created. Moreover, the issues of the historian are, if the rich literature on research utilisation in policymaking in other fields is anything to go by, not new or unique to history.67

1.3 Aims and Scope of the Study

Aims

In Section 1.2, I showed that the origins and development of palliative care services and the role of governmental policies in the Netherlands have not yet been investigated historically. Contributing to the historical scholarship on health care services and policies in general and palliative care in particular, is the main aim of this thesis. More specifically, I will show how and why a different institutional set up emerged in the Netherlands than in the exemplary case of England. Such a history need not only contribute to historical scholarship. It is expected that two subsidiary aims can be served by this investigation. Firstly, the organisation of palliative care is still a topic on the policy agenda in England as well as in the Netherlands. Therefore, this history also aims to speak to the present. The policy implications that emerge from the substantive chapters will be reflected upon in Section 7.3. Secondly, the study provides examples of the dynamics of palliative care as a subfield of broader health care policy. Although this study is not theory building, the in-depth analysis of palliation as a subfield of health care policy over time offers an exploration of the value of taking this perspective as a bridge between macro level

67 Bulmer, 1982; Bulmer, 1986; Davies, Nutley & Smith, 2000; Ettelt, Mays & Nolte, 2013; Jefferys, Troy, Slawik & Lightfoot, 2007; Lindblom & Cohen, 1979; Newman, 2011; Slob & Staman, 2012; Talbot & Talbot, 2014; Talbot & Talbot, 2015; Weiss, 1977.

29 comparisons of health care system studies and detailed studies of individual policy initiatives.

Scope

Conducting and presenting a study covering a time period of half a century in two countries within the context of the constraints imposed on a PhD thesis necessarily requires the use of a broad brush. This implies that for almost all developments discussed in this text, more detailed narratives could have been constructed and more attention could have been paid to local differences. In addition to the archival sources and the literature which this study draws on, other sources, such as oral history interviews, could have been used. However, what makes an interesting history depends on the questions one wants to answer and as described in the previous subsection, the aims of this thesis are related to understanding the differences in the development of palliative care and the role governmental policies played in these developments rather than reconstructing the minutiae of a certain policy initiative. As a result, related developments without direct relevance to governmental policy are excluded. For instance, it will suffice to show that a certain policy idea was initially developed by a pressure group or a think tank, but the decision making process within this organisation resulting in this stance being taken will not be traced. Moreover, the prime focus in this thesis is on developments and discussions surrounding the organisation of services at a national level. The organisation of palliative care at regional and local levels and guidelines for care for individual patients, for instance the so-call Liverpool Care Pathway, are not included as long as they did not influence national policies on palliative care. The relatively broad geographical perspective, also forced me to exclude some other, related topics. The developments related to palliative care for children and pain medication in palliative care are examples.68 Moreover, this study is explicitly limited to the developments in England and the Netherlands. This means that the other nations that are part of the United Kingdom are not included in this analysis. Since the devolution of responsibilities for health care to the national governments, their health services did develop independently and

68 For children’s hospices, see: Burne, Dominica & Baum, 1984; Worswick, 2000. Relevant starting points for historical perspectives on the treatment of pain in palliative care are provided by: Baszanger, 1998; Meldrum, 2003; Reynolds & Tansey, 2004.

30 differently from the English health service.69 This also holds for the policies regarding palliative care. For example, the arrangements for governmental funding of hospices in the early 1990s differed from country to country. At that time Scotland was taking the lead in establishing pound for pound matching of private resources by public funding.70 Hence, researching the United Kingdom instead of England would have resulted in a study that included an additional three nations. This was not considered feasible. However, some data are only available for the United Kingdom as a whole, which explains why I refer to the United Kingdom at some points in the thesis.

1.4 Research Approach

Introduction

This research project has also some characteristics that justify a further explanation of the choices made when designing and conducting it. The implications of the decision to write a very recent history that lacks a clear end point in the past and thus was still unfolding while the research was conducted is the first issue to be discussed. Then, the opportunities and drawbacks of writing comparative history and the connectedness between the two cases are examined. A note on source selection closes this section.

Writing Contemporary History

Whereas for most of the twentieth century the notion of contemporary history may have seemed to constitute a ‘contradictio in terminis’ and many historians questioned whether it was ‘real history’,71 this type of historical research has become increasingly popular since the 1980s.72 Various conceptualisations of contemporary history are

69 Bevan, Karanikolos, Exley, Nolte, Connolly & Mays, 2014; Connolly, Bevan & Mays, 2010; Greer, 2004; Greer, 2005; Lister, 2008, pp.205-221; Woolnough, Arkell & Tobias, 2010. 70 HL Deb, 13 July 1990, vol 521, cols 545-547. 71 Hughes, 1963. 72 Brivati, Buxton & Seldon, 1996. Although this statement holds for both Britain and the Netherlands if we look at

31 known, each of them with their own strengths and limitations. Some would, for example, define contemporary history as the history of ones own times or generation. However, generations overlap, which results in an ambiguous view on contemporary history.73 Others, as is common in Britain, consider the period after the Second World War to be the realm of contemporary history.74 Using 1945 as a turning point will be legitimate in the context of certain (political) histories, but this is not necessarily the case when speaking about, for instance, social developments or indeed policies for health services.75 For these topics the continuity might prevail over change or change might be more gradual than indicated by using a single year as dividing line.76 A third perspective is provided by those who conceptualise contemporary history as the ‘prehistory of the present’.77 This generally implies that the topics selected for investigation are based on contemporary interests and that histories are supposed to be relevant to the present. In other words, contemporary history is considered to be ‘history for the present’. Barraclough’s idea that the task of contemporary history is ‘to clarify the basic structural changes which have shaped the modern world’, because ‘they fix the skeleton or framework within which political action takes place’ and his advice that contemporary history is best practised by starting in the present and then working backwards has long been popular in the Anglo-Saxon world.78 This view has been criticised and is nowadays often rejected by historians. Not only because it does not specify a starting point in time or defines what these ‘basic structural changes’ are, but also because of the significant risk of teleological explanations.79 Barnes concluded in 1988 that ’contemporary history has never been defined in a way that is universally acceptable’.80 This statement appears to be as valid in 2016 as it

the scholarship that has been produced, it should be noted that contemporary history did not develop into a recognisable sub-discipline in the Netherlands. For an overview of the development of contemporary history in these countries, see: Mares, 2011; Metzler, 2012; Strupp, 2011. 73 Barraclough, 1966. 74 This practice was influenced by the Journal of Contemporary History, which publishes predominantly research about the period after 1945, but may accept publications dealing with the period between the wars as well (Jordanova, 2006). 75 Alternative caesura are in use in countries with different historiographical traditions. Gildea, for instance, understands contemporary history as the history from the French Revolution onward (Gildea & Simonin, 2008, p.xi). 76 Metzler, 2004, p.27. 77 Metzler, 2004, p.19. 78 Barraclough, 1966, pp.16-17. 79 Bösch & Danyel, 2012b, p.14. 80 Barnes, 1988, p.30.

32 was in 1988. Whichever of the definitions discussed above we follow, however, it does probably not need much further argument that a history that focuses on the developments in palliative care and covers the period from the mid-twentieth century to nearly the present can be classified as contemporary history.

Some specific issues with regard to the research methodology for studying contemporary history are important. In England, contemporary history of medicine became a research topic in the 1980s, because the Cabinet Office commissioned Charles Webster to write a history of the health services since the war. Additionally, AIDS was a topic that was studied by historians.81 The latter resulted also in reflections on the peculiarities of writing contemporary history of medicine. Berridge, for example, noted that writing ‘history of the present’, defined as histories that lack a cut-off point in the past, comes with problems as well as opportunities.82 Here I discuss the four issues most relevant to this thesis.83 First and foremost, historical source material may be hard to obtain and is likely to be of a different nature than for previous periods. On the one hand there is no lack of published data, while on the other hand working papers of official committees and governmental departments, which for earlier periods are available in national archives, may be hard to collect. This results in what Berridge calls ‘archives on the run’ or ‘ad hoc archives’, which might inherently be biased towards certain interpretations due to their provenance. The increasing digital availability of sources poses new challenges. For example, contemporary historians might have more sources available than can reasonably be analysed and sources may be rather volatile.84 Various versions of a certain document might circulate on the Internet and documents and websites that were accessible yesterday might no longer be available today. Despite these differences, the principles of source criticism do not need alteration and can be applied to most recent sources. Secondly, contemporary history might lack some of the benefit of hindsight and distance common in historical studies. As a consequence, recent developments might be hard to evaluate as short term movements may affect the historian’s perspective more than would be the case if all events studied happened in the more distant past.85

81 Berridge, 2011, p.118; Webster, 1988; Webster, 1996. 82 Berridge, 1994. 83 For a discussion of additional themes, see for example: Metzler, 2012. 84 Metzler, 2012, p.37. 85 Berridge, 1993; Berridge, 1994.

For this thesis, this is mostly relevant when the implementation of policies is discussed. Especially, the long-term and possibly unforeseen consequences might be impossible to assess. Thirdly, the questions asked and the interpretation of events by a contemporary historian may be coloured by the fact that this person has lived through the events under consideration. Although Berridge argues that these factors influencing the interpretation of historical events are thought to be related to contemporary history in particular, she suggests that the historian’s own life experience and personal and political outlook are always key issues in historical accounts. I subscribe to this view, but I think that contemporary historians have a special duty to be aware of this issue and to reflect on their position in time, their experiences that may shape their views on recent developments, and ask themselves how representative their experiences are of broader developments.86 In other words, I think that it is important to defend what Mandler calls ‘the autonomy of history from the present’.87 This should help us to avoid teleological histories in which the past is just the ‘prehistory’ of the (almost) unavoidable present.88 Personally, I consider the comparative nature of the research project a useful tool to remind me of the spectrum of potential events and to see the developments in either country in a broader perspective. Finally, writing a history of a topic that is still unfolding may result in the historian becoming part of the action, for example, if the historians’ earlier publications influence the debates currently under investigation and the researchers may be asked for their own positions in current debates. Although this dynamic might be less relevant for early career scholars than for more established researchers, I have come across several instances in which the line between being an observer and a participant was fairly thin. For example, my earlier work on the funding of palliative care in the Netherlands attracted some attention from a committee writing an advisory report on the funding for hospices.89 The intermingling of past and present may cause difficulties in maintaining historical distance to the objects being studied. Berridge reverts to the anthropological dictum of being ‘a stranger and a friend' to make historians aware of this issue. This approach is also common among researchers working on social science aspects of palliative care, who describe their position as that of a ‘critical friend’.90

86 Metzler, 2004. 87 Mandler, 2007, p.21. 88 Bösch & Danyel, 2012b, p.14. 89 Palliactief, 2011b; Palliactief, 2011a. 90 Clark, 2013, p.xviii.

Again, I consider comparative methodology a helpful approach to maintain an openness to alternative explanations and perspectives. Baldwin neatly summarises this, when he writes: ‘analytical distance from a subject should be a function of methodology, not mere time elapsed’.91 Contemporary history takes history up to yesterday or sometimes even today. In addition to posing the challenges discussed before, two additional issues have to be raised. Firstly, it has been claimed that contemporary history can no longer be national history at a time of globalisation.92 Although health care policy still belongs to the jurisdiction of national governments, influences of initiatives by, for instance, the European Union and the Council of Europe can be identified. Moreover, the transfer of ideas, especially those emerging in England on care for the dying, plays a role in this thesis. The theoretical aspects of this second issue are elaborated on in the next subsection.

Writing Comparative and Transnational History

Transnational history is often used as an umbrella term for a group of approaches to the study of history that attempts to move beyond the study of the histories of individual nation states. Over the past decades approaches such as comparative history, transfer history, and connected history have been developed and enjoyed increased popularity.93 This project was initially designed to compare the development of palliative care in the Netherlands to the situation in England, but soon it became evident that this approach could not be maintained in its ‘pure’ form. In this subsection I discuss the benefits and drawbacks of writing comparative history and show why historians became increasingly interested in the connections between developments in various countries. I will conclude with a description of the approach that was adopted for the research presented in this thesis. Historians can conduct comparisons in a variety of ways: comparisons across time, place, occurrences of a certain phenomenon or different groups in society are all possibilities. However, when writing about comparative history in this thesis, I mean -

91 Baldwin, 2005b, p.24. 92 Barraclough, 1966, p.10; Metzler, 2004, p.39; Pernau, 2011, p.37. 93 Related approaches that have gained momentum are global and world history. However, the questions posed by those applying these perspectives are different (Conrad, 2013; Sachsenmaier, 2011).

35 as is common practice in the methodological literature - comparison based on geographical units. Again, these units can function at different levels: from local to national and from societies to supranational regions. The nation state is the relevant unit of comparison for the research presented in this thesis.94 Various types of comparative historical studies can be distinguished based on their purpose. A useful categorisation of comparisons is to divide them into individualising and universalising comparisons.95 The former are structured to show the uniqueness of a certain case, whereas the latter focus on the commonalities between the developments in the countries compared. Individualising comparisons are more often asymmetrical - thus the main case is analysed fully, while one or more other cases are predominantly used to provide points of comparison and may not be elaborated on in as much depth - than universalising comparisons, which give equal levels of attention to all cases included. However, purely individualising or universalising comparisons can be considered as the opposites of a spectrum and most researchers writing comparative histories will be interested in establishing differences as well as similarities between the countries they study.96 Although historians are said to be ‘notoriously resistant to comparisons’, good reasons to apply such a framework exist.97 Moreover, as we saw in Section 1.2, Hacker notes that contemporary policy history would particularly benefit from a comparative perspective.98 Baldwin formulates the minimum gains of the application of a comparative approach, when he states that ‘at a minimum, good comparative histories should give insights into each particular case that would have remained unrevealed had they been studied in isolation’.99 Whereas Baldwin stresses the additional

94 Although this section does not address the variation in the development of approaches to comparative history in different countries, these can be identified. For overviews see: Fredrickson, 1980; Sachsenmaier, 2011; Woodward, 1997. 95 Tilly offers a more extensive typology of ideal types of comparison. In addition to individualising and universalising, he distinguishes encompassing and variation-finding comparisons, which focus on identifying multiplicity of forms of the phenomenon under investigation (Tilly, 1984, pp.60-68). 96 Berger, 2010; Metzler, 2004, pp.75-77. 97 Baldwin, 2004, p.1. Comparison and transnational history have only recently gained prominence as a particular branch of research and most of the literature referred to in this section is of a relatively recent date. Nevertheless, earlier proponents of these approaches, such as Bloch, can be identified (Saunier, 2013, pp.13-32; Sewell, 1967). 98 Hacker, 2004. 99 Baldwin, 2004, p.11.

36 knowledge that may be acquired through a comparative perspective, Fredrickson praises comparative history as a way to strike a balance between what he calls the damaging presuppositions of the illusion of total regularity and that of absolute uniqueness.100 Additionally, this author states that a critical appraisal of the situation in the researcher’s own country may be stimulated by knowledge of developments in other countries. This view is comparable to Berger’s, who claims that comparison ‘allows historians to gain a vantage point outside one particular regional or national history and makes history a less provincial undertaking’.101 A final benefit mentioned is that comparative investigations promote the recognition that similar functions may be performed by various means.102 In several publications, Haupt and Kocka present a classification of four purposes of comparative history, which covers the arguments mentioned above. Firstly, the heuristic function of the comparative approach enables researchers to identify questions and problems that might not have attracted attention otherwise. Secondly, the descriptive function supports clarification of the profiles of individual cases by providing comparison and contrast with other cases. This action can support as well as challenge notions of particularity. Additionally, the comparative approach is useful for asking and answering questions about the causality of developments. This is what Haupt and Kocka refer to as the analytical purpose of comparative history.103 The last function of comparative history these authors describe is the paradigmatic function, which enables the researcher to take a step back from the case with which he or she is most familiar.104 Despite these opportunities, comparative history does not come without difficulties. Firstly, case selection is a major issue, because the number of cases to investigate in a comparative historical project is generally limited as it has to remain possible to satisfactorily contextualise each of the cases. Therefore, it has been suggested that two or three is the maximum number of cases that can reasonably be included in a

100 Fredrickson, 1995. 101 Berger, 2010, p.192. 102 Fredrickson, 1995, p.604. 103 This aspect of the comparative approach is stressed by Diamond and Robinson, who write about the possibility of using historical developments to answer questions by approaching them as natural experiments (Diamond & Robinson, 2010; Kolchin, 1982). 104 Haupt & Kocka, 1996; Haupt, 2004; Haupt & Kocka, 2004; Haupt & Kocka, 2009. This classification resembles the list of benefits of the analytical comparison as presented in by Kaelble (Kaelble, 1999).

37 historical study.105 Moreover, the choice of cases is relevant, because it may co- determine the outcome of the historical investigation.106 Secondly, the symmetry - or lack of it - of the comparison can be an issue. Asymmetry can be a deliberate choice of an author primarily interested in understanding one case by contrasting it with another, who decides to draw on secondary literature to make the task easier.107 However, more often than not an investigator will also encounter asymmetries in the sources available for research and the national historiographies related to the topic of interest.108 Thirdly, the potential need to carry out a diachronic comparison is one of the issues comparative historians should think about, because the developments to be compared might not have happened around the same time.109 An aspect these authors do not elaborate on, but which is relevant to this research project is that lack of synchronicity may result in the developments in one country influencing the state of affairs in the other country. In that case, it may be desirable to trace how that interaction took place and whether adaptations were made to adjust to the local circumstances. However, a methodologically ‘pure’ comparison, which implies independently existing units of comparison, is no longer possible in such circumstances.110 Moreover, if the researcher is more familiar with one of the cases or if one of the cases is internationally regarded as a model to emulate, there is a risk that the resulting account will be a ‘deficit history’ that investigates why the other country does not resemble the model. Pernau summarises this phenomenon neatly when she writes that in such a case historians would no longer be comparing apples with pears, but investigate what a pear lacks to be an apple.111 Finally, linguistic pitfalls are likely to be encountered in comparative studies. Historical terms may carry different connotations in different countries, concepts may only be relevant in a certain national context, and words that appear similar may refer to different phenomena.112

105 Frederickson, 1985; Haupt, 2007; Kocka, 2003; Kocka, 2009. 106 Baldwin, 2004. 107 Kocka, 2009. For some reflections on asymmetrical historical comparison see also: Kocka, 1999. 108 Berger, 2010; Cox, 1988. 109 Haupt & Kocka, 2004. 110 Pernau, 2011, p.37. 111 Pernau, 2011, p.34. 112 Berger, 2010. In this paragraph the difficulties that a researcher may encounter when working on a comparative project were discussed. However, these challenges are by no means unique to projects with a historical focus. Pollitt provides a review of the state of comparative research in public administration. Among the problems or

A growing dissatisfaction with the focus on the nation state in most comparative historical studies led to the emergence of alternative approaches, most notably transfer history and entangled histories (histoire croisée), from the 1990s. Some authors speak of a transnational turn in history, that followed similar developments in fields like politics, economy and sociology.113 Underlying reasons that explain the increased interest in transnational history are globalisation and an increased interest among historians in topics that were not bound to the nation state.114 Therefore, instead of a study of a single nation or a - preferably - synchronic comparison of the situation or developments in two different geographical entities, they focus on the movement and adjustment of, for instance, people, ideas and practices, which implies a diachronic perspective, or in the case of entangled histories the interactions between different societies or cultures or traditions. The latter requires a combination of synchronic and diachronic reasoning.115 Whereas the methodological literature provided reasonably clear prescriptions with regard to comparative history and its strengths and weaknesses, similar information on transfer and entangled histories is less readily available. Some authors, for example, support the view that a ‘true transnational study’ needs to be concerned with at least three countries. In practice, however, many of the studies published have focused on bilateral patterns of exchange and transfer.116 Moreover, the boundaries between the various approaches are in actual research practice often not as clear as methodologically oriented publications imply. The seminal study Atlantic Crossings by Rodgers, for example, approaches social reform from the perspective of the connections that existed between the different countries and the similarity of the underlying causes for the reforms.117 Another question is how transfer and entangled histories relate to the comparative historical methodology they claim to offer an alternative for. Initially, they were often presented as alternative approaches that were irreconcilable. Te Velde, however, argues that the clear antithesis that some researchers see between comparative history and the history of political transfer does not exist, because the latter requires

choices comparativists encounter are differences in the availability of data and issues with the equivalence of the phenomena studied (Pollitt, 2011). 113 Conrad, 2011; Iriye, 2007; Knudsen & Gram-Skjoldager, 2014. 114 Iriye, 2004. 115 Budde, Conrad & Janz, 2006; Curthoys & Lake, 2005; Gassert, 2012; Iriye, 2013; Kaelble & Schriewer, 2003; Patel, 2003; Turchetti, Herran & Boudia, 2012; Werner & Zimmermann, 2002; Werner & Zimmermann, 2006. 116 Clavin, 2005. 117 Rodgers, 1998.

39 that the historian pays attention to the similarities and differences of at least two national situations. By adding the study of the transfer of political ideas the researcher develops additional insight into the question whether the similarities found did not just happen to take place at a similar point in time, but were also connected.118 This position is increasingly common among historians. Kocka, for instance, writes that ‘histoire comparée and histoire croisée can be compatible and need each other’.119 Before moving to the last paragraph in which the approach adopted in this thesis will be described, it is relevant to reflect briefly on the role transnationalisation has played in the subfields of history this thesis is thematically connected to (see Section 1.2). Firstly, the history of medicine has followed the main debates in history and global histories are becoming increasingly available.120 However, as Andresen and Grønlie describe, a duality exists, because the international character of medical science and knowledge are recognised, but the circulation of this knowledge has not received much scholarly attention. They argue that the comparative approach need not be abandoned, but that it needs to be supplemented by studies on the circulation of such knowledge. Such studies can provide a linking pin between the national and the international level.121 Secondly, within the subfield of policy history most studies still seem to focus on a single nation and often even specific policy programmes or policy decisions and comparative and transnational studies are still relatively rare. One of the explanations is that the welfare state often ‘appears as perhaps the last bulwark of the nation-state’ in political debates.122 However, it becomes increasingly recognised that the creation and development of these nation states was shaped by transnational economic, political and cultural interdependencies.123 It is likely that this interest in transnational aspects of policy history was stimulated by developments in the field of policy studies, in which research on policy learning, transfer, diffusion, and translation has already been known for a longer time.124

118 Te Velde, 2005, pp.207-208. 119 Kocka, 2003, p.39. For similar arguments see: Arndt, Häberlen & Reinecke, 2011; Bauerkämper, 2009; Metzler, 2004, p.80; Pernau, 2011, p.37; Sachsenmaier, 2011, pp.135- 136. 120 Anderson, 2014. 121 Andresen & Grønlie, 2007a. In one of the chapters of their book, they show that this argument not only holds for medical science and knowledge, but also for knowledge about health care systems (Andresen & Grønlie, 2007b). 122 Conrad, 2011, p.218. 123 Kettunen & Petersen, 2011. 124 Clarke, Bainton, Lendvai & Stubbs, 2015; Dolowitz & Marsh, 1996; Dolowitz,

A short summary of the approach adopted in this thesis is that it is an ‘asymmetric, individualising, diachronic comparison between palliative care services and policies in England and the Netherlands with elements of transfer’. As described in Section 1.2, the secondary literature is much richer for the developments in England than for the Netherlands. As a consequence, the situation in the Netherlands received most attention in terms of research of primary sources and will fill the majority of the empirical chapters of this thesis. However, a reason why I considered it interesting to study the Netherlands is that its national organisation of palliative care differed substantially from the situation in England. Here we can recognise what Haupt and Kocka described as the heuristic function of comparative history.125 The fact that these differences in service provision were the starting point for the research project explains also why the individualising aspects of the comparison dominate. As described above, one of the risks of an asymmetrical comparative study is that it becomes a ‘deficit history’. That was mainly the case if the situation in a country obtained the status of exemplar or if the researcher was most familiar with a specific case. However, in this project England provides the case that became exemplary, whereas I was more familiar with the situation in the Netherlands before the start of the project. To extend Pernau’s metaphor, the thesis does not wish to investigate what Dutch pears lack to be English apples. Instead, the question would be: why do pears grow in the Netherlands, whereas apples blossom in England? The diachronic nature of the comparison and the need to pay attention to the transfer of ideas about palliative care stem from the fact that England is generally seen as the country where modern palliative care originated. St. Christopher’s Hospice in London - and to a lesser extent the other hospices in England - attracted many visitors and actively tried to inspire others to improve care for the dying - whether in institutions emulating the model of St. Christopher’s Hospice or in other types of organisations that provided care to people who were dying.126 Among these overseas visitors to St.

2000; Evans, 2009; Rose, 2005; Stone, 2012. 125 The heuristic function of comparative history is not the only one relevant to this project. The subsection on contemporary history already mentioned that the comparative element of the project was expected to help me gain distance from the developments analysed. This use can be classified as the usage of the descriptive and the paradigmatic function of comparative history. Also the analytical purpose of comparative history plays a role in this thesis, but the multi-causal nature of most of the developments described and the diachronic nature of the comparison limits the opportunities for clear judgements about causality from a comparative perspective. 126 Clark, 2000, p.53.

Christopher’s Hospice were several people who contributed to the development of palliative care in the Netherlands (see Chapters 3 and 4). Hence, it is likely that attention to the connections between the developments in the two countries will improve our understanding.

Source Selection

In the subsection on contemporary history, we saw that the restrictions imposed on the accessibility of recent, internal documents of organisations such as the Department of Health, can be considered a disadvantage of writing contemporary history. However, other recent sources, such as advisory reports, may be more readily accessible in the public domain than for earlier periods. As mentioned earlier, one of the challenges of writing a comparative history is that the sources available for each of the countries are likely to be dissimilar. Indeed, the sources for England and the Netherlands available for this research project differed substantially. The relatively long time period covered by this research project resulted in variation of sources over time as well. Access to the remaining public records created during the earlier periods was guaranteed through official archives, but this was not the case for the most recent period.127 However, a wealth of policy documents and supporting materials is available digitally nowadays. Although these documents generally do not allow us to trace governmental decision making processes in detail, this need not be considered overly restrictive for this research project as it focuses on the long term developments instead of the minutiae of each of the policy decisions made. When I started my investigation of the history of palliative care services, I quickly realised that a range of evidence was at my disposal. Not only were archival sources available that would provide insight into the main discussions on this topic by, among others, the government, civil servants, and advisory committees, but also a substantial literature on important contextual developments existed. For instance, the literature on euthanasia alone can fill many shelves in a library. And then there were the medical journals and newspapers that would allow me to trace the responses of the medical profession and the public to certain policy plans. This wide range of sources, especially when considered for two countries, made this project exciting as well as complicated.

127 The National Archives in Kew as well as the Nationaal Archief in The Hague operate on a 20-years rule.

As a consequence, choices had to be made with regard to the primary sources studied. Given the asymmetrical nature of the comparison, I decided to draw on secondary literature for the chapter on England when possible. However, for some of the policy related developments it remained necessary to refer to primary sources. Despite important national differences in the availability and structure of archival sources, I attempted to study a complete set of sources for the main policy initiatives with regard to palliative care. Relevant archives were, for example, those of the Standing Medical Advisory Committee in England and those of the Gezondheidsraad128 (GR) committees in the Netherlands. Also governmental memorandums and files relating to their development were included. Parliamentary debates were traced using Hansard and its Dutch equivalent, and searches were carried out in publications such as the British Medical Journal, Lancet, Medisch Contact and Pallium to identify the views of the medical profession and influential contextual developments. For the Netherlands, this was supplemented with a search of national and regional newspapers.129 An interesting aspect of doing contemporary history is often considered to be that it might be possible to interview the people who were involved in the developments studied. Nevertheless, such oral history interviews have not been carried out for this research project. The reasons for this are mostly pragmatic. Firstly, adding oral history interviews to this project would have extended its scale beyond what was feasible in the context of a thesis, especially if we take the wide range of potential interviewees into account and realise that (former) civil servants are notoriously hard to identify and trace to request interviews. Secondly, interviews with the pioneers of palliative care in England have already been carried out in the context of the Hospice History Project130 and witness seminars on pain management and palliative medicine were organised as

128 Health Council. 129 The search strategy used was as follows: - National newspapers (1945-1994) through Delpher for key words: ‘Hospice’ (hospice), ‘palliatieve zorg’ (palliative care), ‘terminale zorg’ (terminal care) or ‘bijna thuis huis’ (almost-at-home house). - National newspapers (from 1995) through LexisNexis for key words: ‘Hospice’, ‘palliatieve zorg’, ‘terminale zorg’ or ‘bijna thuis huis’. - Regional newspapers (from 1995) through LexisNexis for key words: ‘Hospice’, ‘palliatieve zorg’, ‘terminale zorg’ or ‘bijna thuis huis’ in combination with ‘overheid’ (government) or ‘beleid’ (policy) or ‘ministerie’ (ministry). 130 See for information on this project: Clark, Small, Wright, Winslow & Hughes, 2005.

43 part of the Wellcome Witnesses to Contemporary Medicine series.131 The publications based on this work will be referred to where relevant. Finally, as many of the actors involved in the early stages of the development of palliative care services and policies did already pass away, interviews would be most relevant for the most recent periods. This would enlarge the differences in source base used for the various time periods. The combination of the factors discussed above and the focus of the research project on long term developments led me to the conclusion that oral history interviews, though interesting, could be excluded without losing too much depth of the analysis.

1.5 Plan of the Thesis

As I argued earlier in this chapter, the development of modern palliative care in England has fulfilled the function of exemplar around the world. Moreover, a substantial body of literature does already exist on its history. Whereas sufficient secondary sources existed regarding the establishment and development of palliative care services, some primary sources had to be consulted for the responses to these services by policymakers. The elements of this history that are relevant for the comparison with the Netherlands are narrated in Chapter 2. Chapter 3 is a short chapter which offers some basic information about the structure and development of the health care system in the Netherlands. It is concluded with a comparison of the characteristics of the English and the Dutch health care system. The aim of this chapter is to equip readers with the background necessary to follow the sometimes rather technical discussions about the position of palliative care services within the health care system that follow in Chapters 4 to 6. Readers familiar with Dutch health care services and policies can skip Chapter 3 without missing essential information. The three empirical chapters that follow deal with palliative care services and policies in the Netherlands. In deciding on their structure, some choices related to the periodisation of these chapters had to be made. Various ways of periodising the past are possible, with traditional divisions for politically oriented topics based on taxonomies such as rulers or governments and ideological cycles.132 As discussed in the literature, periodisations can be rich with historiographical assumptions and result

131 Overy & Tansey, 2013; Reynolds & Tansey, 2004. 132 Jordanova, 2006, pp.107-121; Zelizer, 2012, p.9.

44 in foregrounding certain historical developments.133 Moreover, Zelizer highlights that policy histories often do not fit into frequently used chronological structures, for instance because a policy cycle outlasts a certain administration, and shows that most policy fields will have their own timelines.134 For Chapters 4, 5 and 6, I opted for a periodisation dominated by the developments in palliative care linking them to specific time periods, which roughly align with the main political caesura. This means that Chapter 4 will look at the role of nursing homes in care for the dying during the period until the 1970s. In Chapter 5, the establishment of specialist services for palliative care is described. These initiatives took place during the 1980s and early 1990s. During the time period covered in these chapters the Christian Democrats maintained a central position in the government despite the depillarisation and related electoral shifts from the 1960s.135 As we will see in Chapter 6, this changed in 1994 when the first cabinet was formed by the secular parties Partij van de Arbeid136 (PvdA), Volkspartij voor Vrijheid en Democratie137 (VVD) and Democraten 66138 (D66).139 This government was the first to establish a palliative care policy programme. This programme, its implementation and its connection to the change of the law with regard to euthanasia are topics covered in the Chapter 6. The final sections of this chapter deal with the developments from the early 2000s to the present. Comparative observations on the developments in England and the Netherlands, the policy implications emerging from this research project, and suggestions for further research are provided in Chapter 7.

Since the situation in England and the Netherlands is analysed in this thesis, it is unavoidable that Dutch sources, names, and other terms will be used. Translations and - if necessary - explanations are provided the first time the name or term is used, translations of the terms used as abbreviations are also included in the List of Abbreviations on pages 4 to 6.140 Quotes from Dutch sources are given in translation;

133 Blaas, 2001, p.47; Jordanova, 2006, pp.107-121; Nullmeier & Kaufmann, 2010. 134 Zelizer, 2012, p.4&26. 135 The Christen Democratisch Appèl (Christian Democratic Appeal) (CDA) or one of its predecessor parties had been member of the government since the elections of 1918. 136 Labour Party. 137 Liberal Party. 138 Liberal Democratic Party. 139 Wielenga, 2009, p.8. 140 Prudence is called for if one wants to compare the Dutch governmental

45 all translations are by the author.

positions to the British based on their nomenclature. In this thesis, Minister is used in the Dutch context for the function of ‘Minister of Volksgezondheid en Milieuhygiëne’ (Minister of Health and Environment) (VoMil) and later ‘Minister van Welzijn, Volksgezondheid en Cultuur’ (Minister of Welfare, Health and Cultural Affairs) (WVC) and ‘Minister van Volksgezondheid, Welzijn en Sport’ (Minister of Health, Welfare and Sport) (VWS), who heads the ministry. The Minister is supported by one or two ‘staatssecretarissen’, who will be referred to as Secretary of State. Ministers and Secretaries of State can be politicians who participated in the elections, but the parties in government can also ask other persons to join the cabinet as Minister or Secretary of State. Politicians who were on the list of candidates at the election, give up their parliamentary seat to become cabinet members (Andeweg & Irwin, 2009). The Dutch function of Secretary of State is roughly comparable to the British position of Minister.

Chapter 2

Palliative Care Services and Policies in England

2.1 Introduction

Introduction

In this chapter, the development of modern palliative care services and policies in England will be sketched. As mentioned in the previous chapter, the English hospices fulfilled the role of exemplar for people around the world who wanted to improve care for the dying. The aim of this thesis is to see how and why the developments in the Netherlands differ from the English model of hospice care. This is the reason why this chapter is limited to the most essential issues when it comes to the development of palliative care services in England. With regard to the policies influencing these developments, the discussions are slightly more in depth as less secondary literature is available on these topics. However, before moving to the substantive sections on palliative care services and policies, it is desirable to sketch the background against which the developments took place. Therefore, the following subsection will provide a short overview of the main institutions and developments in English health care. This section is anticipated to be helpful for readers who are not acquainted with the National Health Service (NHS) and its development. People who possess this knowledge already might move to the following subsection immediately. The second and third subsections discuss the earlier roots of the hospices as they emerged in England from the late 1960s and the discussions on care for incurable cancer patients in the Medical Advisory Committee Sub-Committee on Cancer during the 1940s.

Main Institutions and Developments in English Health Care

In England, hospitals were run by charities and local governments in the period before the establishment of the NHS. Funding for voluntary hospitals was provided through a

47 mix of subscriptions, donations and collections.141 Some obligations regarding public health were imposed on the local authorities by law.142 In 1948, the NHS was established to provide medical care free at the point of delivery. As a consequence, all hospitals were nationalised, doctors - with the exception of general practitioners - became employees, and the costs of medical provision were covered from general taxation. In contrast to some Nordic and Southern European states where local governments played a crucial role, the central government was responsible for the NHS and applied top-down authority over local bodies.143 Until the mid 1970s, the NHS had a strongly regionalised structure and continued without major structural changes. The first structural change was implemented in 1974 and resulted in the establishment of Area Health Authorities. From 1976, a national planning system was in place and the 1980s saw a new emphasis on management. For example, a NHS Chief Executive as well as sets of performance indicators made their appearance.144 Moreover, under the conservative governments under Thatcher the budgets available for health care were restricted to prevent rising expenditures. The consequences of cumulative underfunding, such as waiting times and closure of wards due to a lack of resources, became apparent during the second half of the 1980s. The introduction of an internal market in the NHS, which created a split between purchasers and providers, was meant to solve these problems. With the election of a Labour government led by Blair in 1997, a new direction for health care, based on co-operation rather than competition, seemed to emerge. However, a crisis in health care stimulated increased investment in the NHS and a change of policy that resulted, from 2000, in the implementation of new structures which increasingly tended towards competition between providers instead of cooperation.145 Primary Care Trusts (PCTs) were now to commission care for their inhabitants. A difference with the Thatcherite form of competition was the emphasis on quality rather than price, because prices were fixed by national tariffs under the ‘Payment by Result’ (PbR) reimbursement system. From 2008, these services could be provided by ‘any willing provider’. Hospitals could gain autonomy by applying for Foundation Trust status. This acclaimed focus on quality and autonomy of hospitals was accompanied by increased usage of nationally set targets and other forms of

141 Doyle, 2014, pp.109-110; Gorsky & Mohan, 2006. 142 Mohan, 2003. 143 Powell, 2014, p.177. 144 Edwards & Fall, 2005; Gorsky, 2013; Massey & Pyper, 2005; Pollitt, 1986. 145 Secretary of State for Health, 2000.

48 performance management.146 The election of a coalition government of the Conservatives and Liberal Democrats in 2010 soon resulted in a significant restructuring of the NHS. From April 2013, PCTs and Strategic Health Authorities were abolished. GP-led Clinical Commissioning Groups (CCGs) became responsible for planning and commissioning the majority of the care in their geographical area, which could be commissioned from ‘any qualified provider’. The newly created body NHS England commissioned primary care and specialist care. Additionally, NHS England allocated resources to the CCGs, oversaw the operation of the CCGs, and supported nationwide improvement of the quality of care. NHS England was established as an independent organisation, placed at ‘arms length of the government’.147 As a consequence, the Department of Health’s responsibility for the NHS was reduced to providing strategic leadership.148 This subsection provided an overview of the health care context in which palliative care services developed in England. In the following subsections, we will change our focus and look at developments that took place before the establishment of the modern hospices.

Roots of Modern Hospices

In Section 2.2, the establishment of St. Christopher’s Hospice in London by Cicely Saunders will be described. Although a new model of care for the dying that became renowned around the world was developed in this hospice, the set up and care provided owed much to earlier ‘homes for the dying’. Saunders saw St. Christopher’s Hospice as part of a tradition stretching back to the Middle Ages, in which hospices had been places for pilgrims.149 Several homes for the dying with religious foundations had been established during the early twentieth century. Most of these institutions were based in London, but an overview created on behalf of the Medical Advisory Committee Sub-Committee on

146 Klein, 2013. 147 NHS England, 2014b. 148 Readers looking for more comprehensive accounts on the English health care system since the Second World War may refer to: Baggott, 2004; Boyle, 2011; Exworthy, Peckham, Powell & Hann, 2012; Greener, 2009; Ham, 2009; Harrison & McDonald, 2008; Klein, 2013; Rivett, 1997; Webster, 1988; Webster, 1996; Webster, 1998. A survey of historical scholarship on the organisation of and policymaking in the NHS is provided by Gorsky (Gorsky, 2008). 149 St. Christopher’s Hospice, 1972; St. Christopher’s Hospice, 1977.

Cancer (MAC SCC) in 1945, mentioned the existence of such places in cities like Birmingham, Bradford, Hull, Manchester, and Reading.150 Although Humphreys argues that these organisations have to be regarded as isolated pockets that did not actively seek to disseminate their ideas, the practices in these institutions shaped Saunders’ thinking on care for the dying.151 For example, she spent a considerable amount of time as volunteer and researcher at the already existing St. Luke’s House and St. Joseph’s Hospice in London before founding St. Christopher’s Hospice. About St. Joseph’s Hospice she wrote:

I have tried to plan something on the lines of St. Joseph’s because I think that in many ways it is an ideal set up, because I think that it has something to give to the staff as well as the patients.152

These influences can be seen, for instance, in the size of St. Christopher’s Hospice - St. Joseph’s Hospice kept 40 to 50 of the 150 beds for patients with a prognosis of three months or less - and the funding arrangements. St. Joseph’s Hospice had contractual arrangements with the NHS, enabling it to offer its services for free to most of its patients.153 The role of St. Luke’s Hospice was, among others, that this was the place where Saunders first saw the regular administration of oral opioids to avoid the occurrence of pain instead of only administering these drugs when the patient was already experiencing pain.154 Similar ideas on pain medication for the terminally ill by the administration of large and frequent doses of opiates and compassionate care for the dying had been introduced into the medical discourse by A. Worcester. This professor emeritus from Harvard University published a series of lectures in 1935, in which he advocated better care for the dying.155 Cicely Saunders was referred to this book by one of her tutors when she read medicine in 1951.156 Despite these similarities, St. Christopher’s Hospice also had some characteristics that clearly demarcated it from the earlier hospices. A major difference is the shift from primarily religious support and nursing care to an institution in which medical,

150 Campion, 1979; Clark & Seymour, 1999; Goldin, 1981; Murphy, 1989; Winslow & Clark, 2005; TNA: MH 71/98, Further note on untreatable cancer, 15 November 1945. 151 Humphreys, 2001. 152 Clark, 1998, p.58; Saunders, 2002a. 153 Saunders, 1965. 154 Saunders, 1988c; Saunders, 1996. 155 Kerr, 1992; Worcester, 1935. 156 Saunders, 1965; Saunders, 1992a.

50 psychological and spiritual care were combined. Moreover, St. Christopher’s Hospice was created explicitly not only as a provider of care, but also as a site for research and education.157

Advising the Minister on Care for the Dying before the Establishment of Modern Hospices

In Section 2.4, we will see how policymakers responded to the growing number of specialist services for palliative care. That section might give the impression that care for the dying only became a topic on the policy agenda from the 1970s. However, in two papers written in 1945 to develop its position with regard to care for the dying, the MAC SCC focused on people dying at home and in homes for the dying.158 Although the MAC SCC preferred home deaths for patients suffering from untreatable cancer, care at home was considered unsatisfactory in many cases because of the difficulties associated with the provision of sufficient nursing care and the living conditions of many patients. Once patients became bed ridden, they often had to be admitted to public assistance institutions. Proposed actions to improve the situation of cancer patients dying at home included financial measures to enable patients to cover the costs of care and drugs and other equipment, extension of the district nursing scheme to enable visits twice a day during crucial periods of the illness, and extended availability of domestic help.159 Based on visits that the MAC SCC’s secretary had paid to St. Luke’s Hospice, St. Columba’s Hospital and St. Teresa’s Hospital in London, the homes for the dying were described as ‘the obvious solution to the care of the patient with untreatable cancer’. The conditions that needed to be fulfilled by these homes to be regarded as satisfactory included: small institution and wards, independent of a voluntary hospital, ‘run with a very light discipline’, ‘cheerful decoration’, and the availability of gardens.

157 For literature on earlier hospices, see: Downie, 1973; Humphreys, 2001; Murphy, 1989; Winslow & Clark, 2005. 158 This work followed from an earlier interest within the Cancer Departmental Committee, which conducted an inquiry into palliative treatment of inoperable cancer in London during the late 1920s. An extended enquiry at a national scale was considered, but the Cancer Departmental Committee considered this a task of the Local Authorities, because they were the bodies that would benefit from the availability of this information (Forber, 1931; TNA: MH 55/44; TNA: MH 55/47; TNA: MH 55/48). 159 TNA: MH 71/98, Home treatment of the late cancer case, Ralston Paterson, 1945.

In contrast to the existing situation in the institutions visited, it was suggested that the medical practitioners who had been treating the patients before their admissions would have to be in frequent touch with the patient to provide palliative treatment when desirable.160 After discussion in the MAC SCC, these papers were combined in a draft memorandum. In contrast to the initial papers, the views expressed in this memorandum were less positive about the homes for the dying. Characteristics of these organisations that were judged negatively were the limited number of institutions available in the country, their reliance on charitable contributions, their often sectarian religious character, and the insufficient quality of the buildings they occupied. Recognising that ‘for some years to come no drastic reforms of institutional treatment will be possible since for them an extensive building programme is indispensable’, the MAC SCC decided to consider the principles which should underlie the provision of care for incurable cancer sufferers. Aspects such as comfort, freedom from pain and kind attention were further specified by recommendations regarding buildings, diet and staffing.161 This paper was discussed and amended, but I found no evidence that it became available in a final form and informed policymaking.162 A possible explanation for this finding is that the expected establishment of the NHS imposed other priorities for health care policy. These debates in 1945 proved to be rather isolated occurrences if we look at national policymaking during the decades that followed. I found no evidence of concrete initiatives to develop plans to improve care for the dying. Moreover, the government did not take action when the outcomes of a survey commissioned by the Calouste Gulbenkian Foundation163 showed the insufficiency of the facilities in which care for the dying was provided (see Section 2.2 for more details on this survey). In response to the outcomes of this survey, the Ministry of Health (MoH) said that it did not consider it the responsibility of the hospital authorities to provide all care required.164 A probable explanation for this position is that a substantial part of care for the dying

160 TNA: MH 71/98, Further note on untreatable cancer, 15 November 1945. 161 TNA: MH 71/98, CSC Paper 4/46: Provision for the care of patients suffering from Cancer for whom further active treatment by surgery or radiotherapy is not recommended, 1945. 162 TNA: MH 71/98. 163 This foundation was established in 1956 in the memory of Calouste Sarkis Gulbenkian. During its early years, the activities of this foundation were defined widely as general charity, the arts, education and science (Hewison & Holden, 2007). 164 Herbert, 1993.

52 was considered to belong to the social care domain. Therefore, a fear might have existed that old people entering the last stages of their lives, who required nursing care but did not have a direct medical care need, would have to be admitted to acute hospitals.

Overview of the Chapter

The establishment of modern hospices and the expansion and diversification of these services are the topics of Sections 2.2 and 2.3. The existence of these voluntary sector organisations became a topic for discussion in Parliament and within the Department of Health and Social Security (DHSS) during the 1970s.165 I analyse these debates in Section 2.4. In 1980, the first advisory report about the future development of hospices was published. In Sections 2.5 and 2.6, the ideas presented in this report and its lack of influence on the future development of palliative care are discussed. Section 2.7 covers the most recent period in which cancer policies and health care reforms impacted on palliative care and the Department of Health (DH) presented its first palliative care policy programme. In the chapters on the Netherlands, we will see that euthanasia is an issue that affected the development of palliative care in several ways. For England, a history of palliative care services and policies can be written without explicit reference to euthanasia. However, to get a clearer view on the impact of the euthanasia debate in the Netherlands, it is desirable to have some knowledge of the relationship between palliative care and euthanasia in England. Therefore, I present a brief discussion of this topic in Section 2.8.

165 The DHSS succeeded the Ministry of Health (MoH) in 1968 and was replaced by the Department of Health (DH) in 1988.

2.2 Establishing Modern Hospices

Identifying a Need for Better Care for the Dying

R. Lamerton, the doctor who was involved in setting up the home care service of St. Joseph’s Hospice in 1974 (see Section 2.3), wrote about the start of the hospice movement: ‘The hospice movement wasn’t some boffin’s bright idea. It was a practical response to obvious needs.’166 In this subsection, the backgrounds and identification of these needs are discussed. During the twentieth century, some developments took place that resulted in an increase of the number of people dying in hospitals. Disease and mortality patterns had changed as deaths from diseases such as pneumonia, scarlet fever, diphtheria and tuberculosis had started to decline and the incidence of cancer and heart disease had been rising during the first half of the twentieth century. This change of disease incidence was accompanied by the institutionalisation of death in hospitals. Between 1897 and 1967, the percentage of deaths in hospitals and medical institutions rose from 13 to 58 percent. The establishment of the NHS, able to provide a hygienic environment with specialised equipment for more patients who were not easily nursed at home, contributed to this shift.167 In the NHS, however, terminal care was relatively neglected. Cancer care, for example, where chemotherapy was joining surgery and radiotherapy as treatment modality, became increasingly interventionist and focused on the cure of patients.168 Also the geriatric departments, which were established in numerous hospitals after the NHS came into existence, were not deemed appropriate places for dying patients.169 Many of these departments were the continuation of the chronic sick wards of the Poor Law infirmaries of the pre-NHS period and their housing and staffing situation was often

166 Lamerton, 1986, p.5. 167 Cooter, 2003, pp.476-477; Strange, 2011. 168 Bostock, 1991, pp.61-62. This development had started before the NHS was founded. From the early twentieth century, the medical profession had generally been optimistic about the chances to find a cure for cancer in the near future. As a consequence, plans for homes for incurable patients were abandoned in favour of laboratory research and curative treatments became more important at the expense of palliative treatments (Edwards, 1980; Murphy, 1989). 169 By the early 1960s, geriatric departments had been established in about a hundred hospitals (Hancock, 1973, p.15).

54 inadequate.170 Also the existence of waiting lists for geriatric wards that often exceeded the remaining life expectancy of terminally ill patients, limited the suitability of such wards as places for terminal care.171 When geriatrics became a more established part of the health service, it seemed that geriatricians were, in spite of their relatively extensive experience with dying patients and the fact that they formally considered this part of their job, reluctant to include this in their range of duties in practice and did not regard it as a priority for their work.172 This has been explained by their fear of becoming separated from the mainstream of medicine and the anxiety that could be expected among patients that were referred to them if they were known as ‘terminal care experts’.173 Despite this state of affairs in medicine, an increased interest in care for the dying can be identified in various western societies during the 1950s and 1960.174 Although this interest was limited to certain branches of society, it resulted in several publications concerned with the improvement of care for the dying in England during this period. The Marie Curie Memorial Foundation,175 for example, published the Report on a National Survey Concerning Patients with Cancer Nursed at Home in 1952. Among the recommendations identified by the committee conducting this research project were the provision of special residential homes for the skilled nursing care of both terminally ill and convalescent cases in a comfortable environment and the need to provide extended bedside nursing for domiciliary patients, particularly during the night. The Marie Curie Memorial Foundation took the initiative to establish such residential homes, with the first Marie Curie Home opening in Fife (Scotland) in 1952. Over the decades that followed new Marie Curie Homes were established throughout the United Kingdom, and by the late 1970s 430 beds were available in 11 Marie Curie Homes.176

170 Hancock, 1973, p.15; HL Deb, 13 December 1961, vol 236, cols 325-416. 171 Department of Health and Social Security, 1973, p.26. 172 Royal College of Physicians of London, 1972, p.3. 173 Holford, 1973, pp.4-5. 174 Ariès, 1974; Feifel, 1959; Glaser & Strauss, 1965; Hinton, 1967; Kübler-Ross, 1969; Scott & Brewer, 1971. 175 This foundation had been established in 1948 by five committee members of the Marie Curie Hospital in Hampstead who disassociated themselves from the NHS. The objectives of the foundation were to provide nursing and welfare service for patients in their own homes, to run residential nursing homes and to award grants, scholarships, fellowship to encourage research (Marie Curie Memorial Foundation, 1985). Currently, the organisation is known as Marie Curie. 176 In the mid 1980s, Marie Curie Memorial Foundation decided to cooperate with the hospice movement and transformed its Marie Curie Homes into specialist palliative care units (Clark, Small, Wright, Winslow & Hughes, 2005, p.97).

Eight years after the publication of the Marie Curie Memorial Foundation report, comparable concerns were expressed about the care for the dying more generally. A project on the care of the dying was conducted on behalf of the Calouste Gulbenkian Foundation by H.G.L. Hughes and was published as ‘… Peace at the Last’: A Survey of Terminal Care in the United Kingdom. The institutional field as presented by Hughes showed deficiencies in most of the types of institutions identified. The outcomes of the survey of the Councils of Social Service in England demonstrated that 12 of the 13 hospital regions held the view that insufficient beds were available for long-stay and terminal cases. Additionally, Hughes found that the conditions in homes for the dying varied considerably and that the care provided was ‘as good as possible under the circumstances’, but that staff shortages existed when compared to the NHS and that the accommodation was unsatisfactory.177 The image of ideal care provision for terminal patients sketched by Hughes started from the premise that dying at home was the preferable option. According to Hughes, the ideal place for terminally ill patients who could not be nursed at home would combine the homely atmosphere found in some nursing homes with modern hospital surroundings and procedures.178 These reports created a context in which improving care for the dying was seen as an activity that merited attention, but not many medical practitioners responded to this call. It was a new generation of medical doctors, including people such as J. Hinton, R. Lamerton, C. Saunders, and E. Wilkes, who - often inspired by their personal experiences - devised concrete alternatives.179

Establishing and Funding St. Christopher’s Hospice

The story of how Cicely Saunders met a young man dying from cancer in 1948, who inspired her to improve the care of the dying and left a small legacy that was to be the

177 Hughes, 1960, p.22. 178 Hughes, 1960, p.54. This report not only addressed the desirability of change, it also proved to impact more directly on the plans of Cicely Saunders. From Saunders’ correspondence it becomes clear that she was in touch with Hughes already before the report was published and asked him for his opinion on a 10-page document entitled The Scheme in which she described in some detail her idea for a home for the dying (Saunders, 2002a). Later, Hughes became directly involved in the organisation of St. Christopher’s Hospice and became a member of its council. 179 Bostock, 1991, pp.61-62; Clark, 1999; Overy & Tansey, 2013, pp.17-19.

56 first funding for St. Christopher’s Hospice has been narrated extensively in other publications.180 Over the years, Cicely Saunders developed a vision on the type of care she considered desirable for dying patients. A charity to prepare for the actual foundation of the hospice was established in 1961. In 1967, St. Christopher’s Hospice opened in newly built premises with 54 beds in its wards and six single rooms for terminally ill patients. Additionally, the Drapers’ Wing contained sixteen bed-sits for elderly, but not terminally ill, residents.181 The philosophy of hospice care as developed during the first decades of its existence in England was summarised by R. Twycross, the second research fellow of St. Christopher’s Hospice and later consultant physician at the Sir Michael Sobell House in Oxford, in the following way:

St. Christopher’s stands as a protest against the shortcomings of modern high technology medicine. Looking after patients mainly with far-advanced cancer, this modern hospice offers a type of care more appropriate to the needs of the dying - care which considers the person and his family as much as the disease and which provides an environment that enables the individual to adjust emotionally and spiritually to his approaching death.182

A characteristic of St. Christopher’s Hospice that was to have a lasting impact on the development of hospice care in England was that this hospice was deliberately established outside the NHS. About this decision Saunders claimed:

We want to be independent because we need freedom of thought and action; we want to be an interdenominational but a religious foundation, and we want freedom to develop and expand as we are led to do so.183

Moreover, this independence from the NHS ensured that the hospices would be flexible and would not be associated with the dissatisfaction with the care of the dying in hospitals.184 Nevertheless, from the early development of St. Christopher’s Hospice this split with the NHS was not envisaged to be absolute and many hospice pioneers explicitly aimed to spread the ideas developed in hospices within acute care settings from the 1970s.185 A consequence of the desire to establish St. Christopher’s Hospice outside the NHS was

180 Clark, 1998; Du Boulay & Rankin, 2007; Saunders, 1977; Saunders, Summers & Teller, 1981. 181 Saunders, 1977; St. Christopher’s Hospice, 1972. 182 Twycross, 1980, p.475. 183 Du Boulay & Rankin, 2007, p.64. 184 Overy & Tansey, 2013, p.21; St. Christopher’s Hospice, 1977, p.9. 185 Overy & Tansey, 2013, p.21.

57 that funding had to be obtained from a range of sources. Most of the capital costs involved were covered by donations and grants from charities. For instance, a grant was received from the King’s Fund to buy the site in Sydenham, and the Nuffield Foundation and others were persuaded to fund the building. The Regional Hospital Board (RHB)186 and later the Regional Health Authority (RHA) became important sources of funds to cover the running costs of St. Christopher’s Hospice, and monies were pledged before the hospice had opened its doors.187 The seeds of this development were planted in 1961, when Saunders visited A. Winner, then a medical officer and from 1962 Deputy Chief Medical Officer, at the MoH.188 Although Winner later characterised the plans for St. Christopher’s Hospice as ‘a wild scheme and madly extravagant - quite out of the question’, she supported the plan and established informal exchanges with the RHB that would result in this organisation providing financial resources to cover a substantial share of the running costs of St. Christopher’s Hospice.189 However, the MoH also explicitly told Saunders that the voluntary sector would have to pioneer this field.190 Addressing Winner at a conference, Saunders later said: ‘I cannot tell you how important it was to have our ‘mole in the Ministry of Health’.191 During the years that followed, Saunders continued to enjoy good access to the MoH - and later the DHSS.192 The positive reception of the plans for St. Christopher’s Hospice was also shared by other people at key positions in the MoH, and later DHSS, such as the Chief Medical Officer Sir G. Godber and the Chief Scientist R. Cohen.193 The latter provided grants to evaluate the work in the hospice and by its outpatient services and to conduct research

186 Regional Hospital Boards - initially 14, later 15 - were responsible for the administration of hospitals in England and Wales from the establishment of the NHS in 1948 to the reforms of 1974 (Ham, 2004, pp.15-16). 187 St. Christopher’s Hospice, 1977, p.9. 188 After her retirement in 1967, Winner became the first Deputy Medical Director at St. Christopher’s Hospice. Later, she took on the roles of Chairman (1973) and President (1985) of the hospice (Overy & Tansey, 2013, p.13). 189 Winner, 1982. 190 Saunders, 1998, p.440. 191 Saunders, 1982, p.4. 192 One of the people who facilitated this access was Gillian Ford, who started work at the MoH as a medical officer in 1965 and became Deputy Chief Medical Officer in 1977. She had shared a flat with Cicely Saunders during the 1960s and served as a voluntary doctor at St. Christopher’s Hospice (The Hospice History Project: Biography of Gillian Ford. http://www.hospice- history.org.uk/byoralsurname?id=0040&search=f&page=0. Accessed 19 December 2013; TNA: MH 156/467). 193 Overy & Tansey, 2013.

58 on drug administration and bereavement.194 Also the operation of the outpatient service was initially directly funded by the DHSS. When the project status of the service ended after three years, the costs were covered by money made available by the South East Metropolitan Regional Hospital Board.195 During the first decade of the existence of St. Christopher’s Hospice, the income it received from the NHS contracts for around 40 of its beds had an important stabilising effect on its financial resources.196 The Annual Report of St. Christopher’s Hospice over 1979/1980 claimed that without the NHS support it ‘would hardly have started or survived’.197

Other Initiatives

In the previous subsections, I showed that the emergence of hospices in England had its roots in the existing homes for the dying and was embedded in a wider interest in improving care for the dying. During the 1970s this resulted in the establishment of around 50 other inpatient facilities for dying patients. St. Anne’s Hospice in Manchester and St. Luke’s Nursing Home in Sheffield were the first of them, opening in 1971.198 The preparations for St. Luke’s Nursing Home had begun before the plans for St. Christopher’s Hospice had crystallised. In 1963, Saunders wrote to Wilkes, at that time working as a GP in Derbyshire:

Many thanks for your letter. I am fascinated to hear that you are going to try and start some kind of hospice in your part of the World. I will certainly collect up a set of slides for you and send them on in due course. In the meantime however I would dearly love to know a little more about this because of course I am bursting with ideas about beginning such institutions!199

Also the ideas for the establishment of several other hospices had started to develop before St. Christopher’s Hospice was in operation. An example is the St. Barnabas Home in Worthing. This hospice welcomed its first patient in January 1973, but the preparations for this facility went back to November 1966. The people involved in this organisation, however, had been inspired by Saunders’ writings and had been in touch

194 Saunders, 1998. 195 St. Christopher’s Hospice, 1972. 196 Campion, 1979, p.99; St. Christopher’s Hospice, 1972; St. Christopher’s Hospice, 1977, p.62. 197 St. Christopher’s Hospice, 1980, p.48. 198 Clark & Seymour, 1999, p.74. 199 Saunders, 2002b; Wilkes, 1981.

59 with her from the early stages of the development of their hospice. Nevertheless, St. Barnabas Home differed also from St. Christopher’s Hospice with regard to choices made about the medical care for the patients, because the local GPs were encouraged to continue the care of their patients who were admitted to this hospice. This arrangement was implemented to enable the medical director to teach the GPs pain management and to allow the patients to return home whenever possible.200 St. Barnabas Home was not the only hospice to take this stance towards care by GPs. St. Luke’s Nursing Home in Sheffield operated a similar policy.201 However, both these homes developed into hospices with their own staff of palliative care consultants later.202 These examples illustrate that the emergence of hospices in the UK was not solely due to Cicely Saunders’ initiative to establish St. Christopher’s Hospice, but was embedded in a wider interest in the improvement of care for the dying. In the following section we will see how these developments resulted in a growing number of hospices, mostly during the 1980s, and how ideas about care for the dying were transferred to other settings.

2.3 Expansion and Diversification of Palliative Care Services

Expansion of Palliative Care Services

During the 1970s, the number of independent hospices rose steadily, but during the 1980s these institutions proliferated. By 1980, their number was estimated at 50, whereas 175 inpatient hospices with around 2,800 beds were available by 1992.203 With the establishment of new institutions, the variation between the organisations increased and we would have a distorted view of the situation in England if we thought that 175 carbon copies of St. Christopher’s Hospice were dotted around the country. The numbers above already show that the average size of the hospices, with 16 beds,

200 Broad, 1981, pp.132-141; Gusterson, s.a. 201 Wilkes, 1973, p.34. 202 St. Barnabas House. http://www.stbarnabas-hospice.org.uk. Accessed: 2 March 2016; St. Luke’s Hospice. https://www.stlukeshospice.org.uk. Accessed: 2 March 2016. 203 Field & James, 1993; Standing Medical Advisory Committee, 1980, p.9.

60 was substantially smaller than St. Christopher’s Hospice. Dorothy House in Bath, for example, opened in 1979 and had five beds - less than 10 percent of the size of St. Christopher’s Hospice. This house grew out of a home care service that consisted of a single nurse who provided care in the patients’ homes from 1976.204 Another example is St. Luke’s Nursing Home in Sheffield, which we already encountered in the previous section. This unit had 25 beds and admitted a wider variety of patients. In addition to terminally ill patients, this hospice also welcomed post-operative and convalescent patients, and people requiring respite care.205 This set up was influenced by the experiences of one of its founders, E. Wilkes, as a GP who practised in the local community hospital in Bakewell and wanted to transfer some of the improvements he had made to the care of the dying there to the urban environment.206 More generally, in 1990 the results of a survey among hospices in the United Kingdom and the Republic of Ireland were published in which respondents were asked to classify their hospices as specialist units or a ‘homes from home’. The researchers identified a clear split between hospices that had full-time medical directors and consultants and those that were run by GPs or other medical practitioners on a part-time basis. The former considered themselves as specialist units, while the latter primarily identified themselves as a ‘homes from home’.207 Moreover, a new type of hospice emerged during the mid 1970s. Saunders had founded St. Christopher’s Hospice partly with NHS funding, but chose for it to be an independent organisation. The National Society for Cancer Relief (NSCR), however, initiated the establishment of hospices using a model based on close cooperation with the NHS.208 The Area Health Authority (AHA) had to contribute the site and the NSCR would erect the building, which would be handed over to the AHA to be run. By 1976, the first of these NHS managed hospices were opened in Oxford and Kent. Additionally, substantial progress had been made towards opening similar units in nine other places, and a strategic plan was in place for setting up such units throughout the country.209 Once opened, these units became specialised units of the NHS that were integrated

204 Matthews, 1980. 205 Wilkes, 1973, pp.32-33. 206 Overy & Tansey, 2013, p.19. 207 Johnson, Rogers, Biswas & Ahmedzai, 1990. 208 The NSCR had its origins in 1911 and was then known as the National Society for the Prevention and Relief of Cancer. In 1984, the charity was renamed Cancer Relief Macmillan Fund. It has been known as Macmillan Cancer Support since 2006 (Rossi, 2009). 209 TNA: MH 156/467, Minute by A. Hurst on future plans for hospices and continuing care meeting at St. Christopher’s Hospice, 13 September 1976.

61 into the health service with regard to issues such as funding and staffing.210 After the rapid growth of the number of hospices during the 1970s and 1980s, the NHS hospices accounted for circa a third of the total number of hospices. This percentage remained fairly stable over the years that followed.211 Hospices were in most cases established by local groups. Nevertheless, the question whether the foundation of these organisations should be coordinated arose fairly soon. In September 1976, a meeting was arranged to discuss future plans for hospices and continuing care. This meeting, which took place at St. Christopher’s Hospice, was attended by staff members of St. Christopher’s Hospice, and representatives of the Marie Curie Memorial Foundation, the NSCR, the British Cancer Council, and the DHSS.212 Given the plans of the NSCR and the Marie Curie Memorial Foundation to establish additional hospices, the participants agreed that it would be desirable to coordinate these developments and a need for a central register to support this coordination was identified. This register would have to include information on expressions of need and initiatives to establish new hospices as well as information on the availability of funds, experienced staff and training facilities. Although it was reported that a proposal would be drafted and circulated, and the group continued to meet at St. Christopher’s Hospice, I was unable to trace any evidence of these ideas being taken forward and implemented.213 This state of affairs resulted in a situation in which the number of hospices was rising steadily, but in an unplanned manner by the late 1970s.214 Wide regional variations in the level of provision existed, with the South East being the region with most extensive provision. The level of provision in the catchment areas of inpatient units, for instance, ranged from 6 to 150 beds for terminal care per million population.215 Looking back on this time, the researcher involved in the DHSS funded study that produced these data wrote:

210 Wilkes, 1982. 211 Clark, 2016, p.156. 212 TNA: MH 156/467, Minute by A. Hurst on future plans for hospices and continuing care meeting at St. Christopher’s Hospice, 13 September 1976. 213 Calman, 1984; TNA: MH 156/467, Minute by A. Hurst on future plans for hospices and continuing care meeting at St. Christopher’s Hospice, 13 September 1976. A House of Lords debate in 1987 during which the desirability of the establishment of a national register of hospices was discussed, corroborates the interpretation that these plans were not taken forward (HL Deb, 09 February 1987, vol 484, col 423). 214 Kearsley, 1984. 215 Lunt, 1981; Lunt, 1982, p.36.

There were many voluntary groups around the country who, inspired by the success of St. Christopher’s Hospice, were collecting money ‘to build a hospice’, often with very little idea precisely how this was going to meet the needs of their particular community, how it would fit in with other kinds of provision locally and elsewhere… The DHSS had no policy. There was no monitoring of the growth of these services.216

Diversification of Palliative Care Services

In addition to a growing number of inpatient hospices, a diversification of the services offered can be identified. Home care teams were the first new arrival to the hospice family. A factor enabling this development was that, in contrast to the situation in the 1940s, the housing situation of many patients was no longer considered a barrier to nursing a dying patient at home. However, other factors, such as the costs incurred by the families,217 the lack of sufficient home help and night nursing, and the limited communication between the hospital and GPs, were still restricting the possibilities of patients to stay at home until their death during the 1970s.218 Even before a hospice established its home care service, the Marie Curie Memorial Foundation introduced a day and night nursing service for cancer patients nursed at home, initially in London in 1958 and later across the United Kingdom. However, the success of this system varied from area to area and most of the ‘Marie Curie Nurses’ had only received general nursing training.219 Although these ‘Marie Curie nurses’ are nowadays a well established phenomenon, the start of these services was relatively slow and they only became popular once hospices had started to develop home care services.220

216 Lunt, 1985, p.754. 217 Some costs that would be covered by the NHS if patients stayed in hospitals had to be covered by the patients or their families if they stayed at home. 218 TNA: MH 156/466, Letter from N. Teller, 27 March 1972; TNA: MH 156/466, Reprint of paper by B.J. McNulty, 26 November 1971. 219 McNulty, 1973. 220 Rossi, 2009. In 1974, the responsibility for community care transferred to the NHS. At that time, the number of local authorities with Marie Curie nurses on register was 200, and the annual number of patients cared for equalled 3,664 people. The DHSS wrote to the new AHAs advising them of the existence of the Marie Curie nurses and suggesting that the continuation of this service had to be negotiated between the AHAs and the Marie Curie Memorial Foundation. In most regions the parties agreed on an equal sharing of the costs. The NHS became responsible for the local deployment of the Marie Curie nurses (Marie Curie

In 1969, St. Christopher’s Hospice was first to start a home care service. The inclusion of such a service in the care offer of the hospice had been envisioned during the planning stages and the MoH had already awarded a grant for this research and development project before St. Christopher’s Hospice opened.221 This service provided care and support at the home of patients who had been discharged from or were waiting for admission to St. Christopher’s Hospice as well as for those referred by their GPs and other medical practitioners. The research project conducted during the first three years of the operation of this service showed that the majority - 54 percent of the 784 patients the home care team cared for - had been referred by their GPs, who remained involved in the care for their patients.222 During the early years of operation of this service circa 11 percent of the patients cared for by the home care service died in their own homes. Thus the majority of them were admitted to St. Christopher’s Hospice during the last days of their lives. The care provided at home was not only considered a good way to fulfil the desire of the patients to stay at home, but was also seen as a way to enable the hospice to make the best possible use of the 54 inpatient beds it had.223 St. Joseph’s Hospice was the next hospice to extend its care offer to the home of the patient as its medical doctor started to make regular home visits in 1974.224 In contrast to the service provided by the home care service of St. Christopher’s Hospice, the care of the patient was taken over completely from the GP.225 During the years that followed comparable home care services for patients nearing the ends of their lives were established around the country. In a survey conducted in January 1980, 23 of these services were identified. Circa 60 percent of these home care services were administered by the NHS, with the remainder being run by charitable bodies. Most of these home care services for the terminally ill were attached to inpatient units, but others were completely independent.226 The NSCR, for instance, established its first Macmillan nursing team in 1975 to provide care for cancer patients, most of whom were in the last stages of their lives. By the early 1990s, over 800 Macmillan nurses were providing home care and were working in almost every local health authority in

Memorial Foundation, 1985). 221 Saunders, 1994. 222 The other referrals were as follows: 25 percent hospital medical social workers, 17 percent St. Christopher’s Hospice wards, 9 percent district nurses, and 5 percent by self referral by the patient’s family. 223 McNulty, 1973. 224 Lamerton, 1986. 225 Overy & Tansey, 2013, pp.60-61. 226 Barritt, 1984; Bibby, 1999; Lunt, 1981.

64 the UK.227 Various other forms of palliative care were developed during this period as well.228 A hospice consultation team, for example, was founded at St. Thomas’ Hospital in London in 1977. This team was set up as a multidisciplinary consultation team that offered advice on the care of terminal patients. The care for the patient, however, remained the responsibility of the doctors and nurses of the hospital wards in which the patient stayed. This team was initially funded entirely from charitable resources, but to ensure a more permanent funding base, new team members were funded by the NHS, or jointly from hospital and charitable sources.229 By 1984, at least 14 comparable teams had been set up.230 Other concepts of palliative care provision that developed were the day care unit and the unit in a hospital. By the early 1990s, 186 day care hospices and 160 specialised support nurses or teams in hospitals were available. Many of the new palliative care services described above were born out of the dissatisfaction of people who, inspired by the hospices, wanted to provide similar care forms in their own work places. However, economic reasons also played a role in the move away from the provision of inpatient care in hospices. Already in 1976, Cicely Saunders stressed that alternative forms of terminal care provision, such as domiciliary services and specialist teams within hospitals, had to be considered in addition to the building of new hospices given the economic climate in which hospices operated.231 Summarising the developments described in this subsection, it is justified to conclude that it was soon accepted that the ideas developed in hospices could - and should - be applied in a variety of settings.232 Over time, the development of these new forms of palliative care provision resulted in a change of the care delivered in hospices. Patients had shorter average stays, because they could often be discharged to their homes.233 Rather than places where the majority of the patients went to die, the hospices became places where they went for pain control during the last phases of their lives.

227 Parliamentary Archives, HC/CP/11357, Brochure ‘Facts on Macmillan’ (s.d.). 228 Twycross, 1980. 229 Bates, Clarke, Hoy & Laird, 1981; Bates, 1982. 230 Manning, 1984. 231 TNA: MH 156/467, Minute by A. Hurst on future plans for hospices and continuing care meeting at St. Christopher’s Hospice, 13 September 1976. 232 See also: Clark, Small, Wright, Winslow & Hughes, 2005; Lamerton, 1975. 233 Writing in 1977, Cicely Saunders stated that about 8.5 percent to 10 percent of all patients admitted to St. Christopher’s Hospice could be discharged home again. The hospice took over 550 admissions a year, with a median length of stay of 10 days (Saunders, 1977).

This focus resulted in a situation in which hospices developed a close relationship to the NHS. In Section 2.6, we will see how these connections grew increasingly tight and were stimulated by newly emerging funding arrangements during the early 1990s. During the 1970s and 1980s, however, the question was discussed whether the establishment of independent hospices was desirable. It is to these discussions that we will turn in Sections 2.4 and 2.5.

2.4 The DHSS and the Desirability of the Establishment of Hospices

Putting Hospices on the Policy Agenda

In the previous section, I argued that the MoH - and later the DHSS - was fairly well informed about the developments at St. Christopher’s Hospice. Moreover, the DHSS sponsored some studies on the problems of terminal illness during the early 1970s. These included the work at St. Christopher’s Hospice on pain control, bereavement and domiciliary services, and Cartwright’s study at the Institute of Social Studies in Medical Care named ‘Life before death’.234 With regard to service provision, however, Lunt, who claimed that the DHSS had no policy to guide the developments in terminal care during the 1970s, was quoted. Nevertheless, civil servants discussed how the care of the dying could be improved and what the role of the DHSS ought to be. One of the reasons why this topic emerged on the policy agenda was that Members of Parliament (MPs) started to address questions to the responsible members of government about care for the dying.235 Moreover, the Secretary of State for Social Services was prompted by a letter of an MP, in which the problematic death of the father of a friend was described. The responsible civil servants recognised that opportunities existed to improve terminal care in terms of

234 Cartwright, Hockey & Anderson, 1973; HC Deb, 22 April 1971, vol 815, cols 448-450W; HC Deb, 26 April 1971, vol 816, col 203. The amounts contributed towards these studies by the DHSS were respectively £5,500 per annum and £23,000 for the whole project (HC Deb, 17 December 1971, vol 828, cols 221-222W). 235 HC Deb, 22 April 1971, vol 815, cols 448-450W; HC Deb, 26 April 1971, vol 816, col 203; HC Deb, 17 December 1971, vol 828, cols 221-222W.

66 facilities as well as the actual care provided to these patients.236 As a group terminally ill patients were said not to fit within the existing medical and administrative structures, because their needs were often multiple and cut across administrative boundaries between, for example, hospital and domiciliary care and health and social services.237 This was one of the reasons why it was not clear to the civil servants at the DHSS whether support for the establishment of independent hospices was desirable. Some of these debates took place in the context of the preparation of a symposium on care for the dying. The preparation of this symposium and the views expressed during this event are the topics of the following subsections.

Preparing a Symposium on Care for the Dying

In response to the growing parliamentary interest and to help focus attention on the issue of care for the dying, a two-day symposium was held by the DHSS in 1972.238 This meeting aimed to bring together people with first hand experience of care for the dying to discuss what was being done and what could be done for terminally ill patients. This was considered a first step towards the creation of a coherent picture of the issue on a national scale and as a starting point for further discussion.239 The questions the civil servants hoped to get answered during this meeting were wide- ranging, and included topics such as the impact of the separation of social work services from medicine, which had been introduced in 1970,240 on support for the dying, and the role of the voluntary sector in the provision of terminal care.241 From the discussions at the DHSS during the preparation of this symposium, it also becomes clear that the establishment of further hospices was not necessarily thought to be the answer to the quest to improve terminal care. In a paper on the subject, for example, home care was considered the preferable option, but in practice an increasing

236 TNA: MH 156/466; TNA: MH 156/467. 237 TNA: MH 156/466, Letter to mr. Collier, 6 November 1972. 238 HC Deb, 25 May 1971, vol 818, cols 211-212; HC Deb, 22 October 1971, vol 823, cols 209-210W; HC Deb, 09 November 1971, vol 825, cols 109-110W; HC Deb, 22 November 1971, vol 826, col 962; HC Deb, 17 December 1971, vol 828, cols 220W-221W. 239 TNA: MH 156/466, Letter to mr. Collier, 6 November 1972; TNA: MH 156/466, Minute by R.G. Wendt entitled ‘Care of the Dying’, 15 February 1972. 240 This change was a consequence of the implementation of the recommendations in the Seebohm Report of 1968. As a result all personal social care was to be provided by social services departments within local authorities (Rivett, 1997). 241 TNA: MH 156/466, Minute by A.J. Collier, 3 March 1972.

67 proportion of deaths was taking place in hospitals. A survey among RHBs in 1971 had found that special arrangements for terminal care were absent in most regions. The few ‘small special hospitals’, such as St. Christopher’s, St. Columba’s and St. Joseph’s hospices, were credited for the technical experience the staff could develop, the ability to facilitate research by concentration of patient groups, and their ability to cope with emotional problems of staff and the public given their religious background. However, these ‘small special hospitals’ could not easily be incorporated into a NHS pattern.242 This NHS pattern was an issue of debate at that time, because the Conservative government that had come into power in 1970 was implementing the first major reform of the structure of the NHS since its establishment.243 Also the question whether terminal care required specific resources rather than being a part of the care provided by every medical speciality emerged during the preparation of the symposium. In a minute, one of the civil servants remarked:

While feelings in the Department (I do not think there has been an overt ‘policy’ on this) has generally been against separate wards or hospitals for the dying in the NHS, the Secretary of State is encouraging RHBs to support private places of this sort by making contractual arrangements with them.244

Therefore, she suggested that the delegates at the conference could discuss whether separate ‘hospitals for the dying’ - inside or outside the NHS - were desirable.245 A colleague responded to this minute by admitting that he was afraid to meet this point head on. His reason for this view was that he deemed St. Luke’s Hospice in London unsatisfactory, but that ‘nobody could argue that St. Christopher’s is other than a scheme of outstanding merit and value’.246 In the end, the civil servants involved in organising the conference decided to let this point emerge from the conference rather than highlighting it on the agenda.247

242 Holford, 1973; TNA: MH 156/466, Paper on ‘Terminal Care’, 3 January 1972. 243 Ham, 2004, pp.15-24. 244 TNA: MH 156/466, Minute by Miss H.M. Hedley, 15 March 1972. 245 TNA: MH 156/466, Minute by Miss H.M. Hedley, 15 March 1972. 246 TNA: MH 156/466, Minute by L.H. Brandes, 16 March 1972. 247 TNA: MH 156/466, Minute by Miss H.M. Hedley, 16 March 1972.

Views Expressed during the Symposium

The symposium was held on 29 November 1972. Topics discussed included the place of hospital and domiciliary care in the provision of terminal care. The proceedings show that a consensus existed that terminal care would preferably take place at home.248 Therefore, the speakers were concerned about the trend away from terminal home care towards the hospital. However, given the demographic, sociological and medical reasons underlying this shift, this development was considered inevitable.249 To improve the care for those dying at home, measures such as establishment of a coordinator for the voluntary services involved, a service to support formal and informal caregivers, and extension of the availability of nursing care were recommended.250 In the papers given during the symposium, various special arrangements for the dying were discussed. The main categories were small specialist hospitals, special wards within hospitals, and the isolation of the patient within a ward. Among the advantages assigned to the small, specialist hospitals was the extensive experience that the staff could develop. However, it was also acknowledged that the experience with the few small specialist hospitals for the dying that existed, suggested that such organisations, as had earlier already been discussed among the civil servants, did not easily fit into a NHS pattern.251 One participant, K.R.O. Porter, Senior Administrative Medical Officer of the South East Metropolitan Regional Hospital Board, the RHB that was supporting St. Christopher’s Hospice, claimed to be ‘a great believer in the pattern of a special unit where the real problems of the care of the dying can be handled’.252 He suggested the establishment of small specialised units for the relatively small proportion of the dying in need of special facilities. Although he admitted that a definitive answer to the question about the required number and location of such units on a nationwide scale could not yet be given, he gave an estimation based on the situation in the South-East Metropolitan Region. This calculation showed that around 24 beds per million population, which would equal a need for around 1,120 beds for specialised care for the dying in England,

248 Department of Health and Social Security, 1973; Hancock, Saunders, Anderson, Wilkes, Smithers, Gibson, Daniel, McTrusty, McNulty, Mitchell & Porter, 1973. 249 Holford, 1973; Porter, 1973. 250 Department of Health and Social Security, 1973, pp.85-86; Mitchell, 1973; Porter, 1973. 251 Holford, 1973, pp.4-5; Smithers, 1973; Wilkes, 1973, pp.32-33. 252 Porter, 1973, p.75.

69 would be a good starting point to meet the need.253 As the establishment of such units would take time, Porter suggested that contractual arrangements had to be developed with existing nursing homes that were in a good position to develop such a service.254 However, not all participants shared this enthusiasm for small, independent, specialised units. One of the most vocal objectors to the idea that more independent hospices were required was D. Smithers, who was a professor of radiotherapy at the Royal Marsden Hospital and had chaired the committee of the Central Health Services Council that had prepared a report on the organisation of cancer services in 1970.255 He suggested the improvement of facilities for terminal care in hospitals and recommended that the teachings of Cicely Saunders, who his memoirs called the ‘shining light’ of the hospice movement,256 had to be put in practice in the hospitals. During the symposium he confessed to:

a prejudice against isolated terminal care homes; not of course against those few expert, specialist institutions which exist for solving the really difficult problems, for research and development and for teaching us how to do these things so much better, but against their proliferation to meet a general need.257

Hence, Smithers concluded that no increase of isolated terminal care homes inspired by St. Christopher’s Hospice’s excellence and promoted by public pressure was required.258 It cannot be reconstructed to what extent Smithers’ views were shared by the other attendees. However, he certainly was not alone in defending such point of view. R.L. Darche, who represented the Executive Councils Association, for instance, argued in favour of special treatment wards in general hospitals.259 Most of the discussions about the organisation of care for the dying during the symposium concentrated on the advantages and disadvantages of different service models. Although a comprehensive concept of terminal care had not yet been

253 This national number is based on the population estimate of 46,686,200 persons in England provided by the Office for National Statistics for mid 1973 (Office of National Statistics: Population Estimates for UK, England and Wales, Scotland and Northern Ireland, Population Estimates Timeseries 1971 to Current Year. http://www.ons.gov.uk/ons/rel/pop-estimate/population- estimates-for-uk--england-and-wales--scotland-and-northern- ireland/population-estimates-timeseries-1971-to-current-year/index.html. Accessed 12 February 2014). 254 Porter, 1973. 255 Central Health Services Council, 1971. 256 Smithers, 1989, p.28. 257 Smithers, 1973, p.37. 258 Smithers, 1973, p.38. 259 Department of Health and Social Security, 1973, p.78.

70 formulated and the services available were thought to be haphazard as a result, no concrete, nationwide policy proposals regarding the organisation of palliative care were developed.260 The representative of the NSCR saw a clear advantage in this variation of existing services, because this would allow for the evaluation of different kinds of organisations, after which could be decided which form was superior.261 However, some attendees argued for another approach and suggested that a national standard of service had to be defined to avoid differences in services provided to patients in different locations. It was also suggested that the 90 AHAs that would come into existence after the 1974 reform could be made responsible for safeguarding a specified minimum level of care for the dying.262 However, given the closing remarks by the chairman of the Symposium, Surgeon Rear Admiral J.M. Holford, the DHSS may not have shared this enthusiasm for standards set by or imposed on the AHAs. He concluded the meeting by acknowledging that the situation in rural Exmoor called for other services than a big industrial city. Therefore, he thought the training of people and dissemination of information of utmost importance as this would enable others to consider their local circumstances and develop solutions that fitted these circumstances.263 The proceedings of the symposium were published in 1973 and commended by the DHSS to the relevant authorities as background information to support them to make arrangements fitting their local circumstances.264 However, the variety of views expressed during the symposium made it hard to develop the coherent picture the civil servants had been hoping for during the preparation of the symposium. Also, the expectation that the symposium could be used as the raison d’etre for the establishment of working groups in the field of terminal care does not seem to have materialised.265 Moreover, the comments by Holford foreshadowed the stance that the DHSS would take towards the development of palliative care during the years that followed. This topic is elaborated on in the following subsection.

260 Holford, 1973, p.2. 261 Department of Health and Social Security, 1973, p.90. 262 Mitchell, 1973; Webster, 1996. 263 Department of Health and Social Security, 1973, pp.91-92. 264 TNA: MH 156/467, Letter PO(H)182/20, 9 March 1973. 265 HC Deb, 12 December 1972, vol 848, col 83W; TNA: MH 156/466, Draft Minute to the Secretary of State ‘The Care of the Dying’, 12 January 1972.

Leaving Initiative to the Health Authorities

The 1974 NHS reform abolished the RHBs and introduced 14 Regional Health Authorities (RHA) and 90 Area Health Authorities (AHA).266 The DHSS decided to leave the responsibility for deciding on the desirability of palliative care services to these Health Authorities without providing them with much guidance. In response to a letter to the Secretary of State for Social Services, a civil servant wrote:

Whether or not these advances267 are more likely to be effective in the context of hospices or special units is a matter for Health Authorities to decide in the light of local needs and available resources. The allocation of funds specifically for this purpose is contrary to departmental policy at the present time.268

During the years that followed, MPs increasingly sought support for hospices in their constituencies. These questions were generally answered by reference to the responsibility of the Health Authorities.269 This stance of the DHSS resulted in a wide variety of policies of the Health Authorities towards hospices and agreements to support these organisations were often drawn up on an ad hoc basis.270 A research report published by the Centre for Policy on Ageing concluded in 1983 that the policy of the Health Authorities, in the absence of any central direction, varied in across the country.271 The consequences of this development can be illustrated by the fact that the contribution to the total costs of hospices by AHAs was reported to range from nothing to 80 percent, with an average commitment of 27 percent during the late 1980s.272

266 The RHAs were responsible for the planning of health services. AHAs were a newly introduced level of management and had to cooperate with the local authorities in their area to develop and plan services. In 1982, the AHAs were replaced by 192 District Health Authorities (DHAs). This set up would remain in place until 1996 (Ham, 2004). 267 This refers to the improvement of care for terminally ill patients suffering from intractable pain. 268 TNA: MH 156/467, Letter from P.F. Higgins, 16 November 1976. 269 HC Deb, 02 March 1978, vol 945, col 672; HC Deb, 08 March 1978, vol 945, col 701W; HC Deb, 03 August 1978, vol 955, cols 682-683W; HC Deb, 10 December 1985, vol 88, col 601W; HC Deb, 23 June 1988, vol 135, cols 1360- 1366; HC Deb, 28 June 1988, vol 136, col 199W; HL Deb, 27 April 1983, vol 441, col 1003. 270 Clark & Seymour, 1999, p.135; Clark, Small, Wright, Winslow & Hughes, 2005, pp.68-69. 271 Taylor, 1983, p.55. 272 HL Deb, 07 November 1988, vol 501, col 473.

2.5 The Wilkes Report and the Growing Number of Hospices273

Introduction

As we saw in the previous Section 2.4, the DHSS left it to the Health Authorities to deal with the hospices and the establishment of hospices as such was neither recommended nor stimulated by the DHSS. Nevertheless, the Secretary of State for Social Services claimed to ‘support the development of hospices in principle’ in 1978.274 This slightly more positive stance towards the hospices might be taken as a sign that their growing number resulted in the acceptance of their existence and their contribution to the care for the dying. Nevertheless, the first advisory report on terminal care for the DHSS, published in March 1980, voiced a different point of view. This report became known as the Wilkes Report, after the committee’s chairman E. Wilkes, by then a professor of general practice and the first Medical Director of St. Luke’s Nursing Home in Sheffield (see Section 2.2). In the following subsections, the background, the content and the responses to the Wilkes Report are discussed. The final subsection deals with a conference that was convened in response to the Wilkes Report and the change of governmental views on the desirability of public support for hospices.

Impetus for Writing the Report

The working group that wrote the Wilkes Report was set up on the initiative of the Standing Sub-Committee on Cancer (SSC) of the Standing Medical Advisory Committee (SMAC) in March 1979.275 The impetus for setting up this working group was provided

273 Standing Medical Advisory Committee, 1980. All claims in this section are based on this report, unless mentioned otherwise. 274 HC Deb, 03 August 1978, vol 955, cols 682-683W. 275 In addition to its chairman, the working group had three other members: G. Harnett (Nursing officer responsible for home nursing at Barnet AHA), D.E.M. Speed (Senior lecturer in Medicine and Honorary consultant Physician of the Horder Ward of the Royal Marsden Hospital), and R.L. Meyrick (GP in London). However, contributions were made by 12 individuals involved in various organisations, among which were the well known pioneers of hospice care such as T. Bates, C. Murray Parkes and C. Saunders, and four Local Medical

73 by a conference on cancer convened by the European Office of the World Health Organization (WHO) in 1977. One of the recommendations resulting from this meeting was that countries that did not yet have a cancer plan should develop one. This recommendation was embraced by the DHSS and the SMAC-SSC, and it was decided that the cancer plan would be built in a piecemeal way by publishing a series of reports. Initially, working groups were established to prepare guidance on acute services (chaired by K.D. Bagshawe), primary care and continuing care (chaired by E. Wilkes), and education (chaired by A. Smith). It was envisaged that reports on manpower and training would be written later. Most of these projects got stalled when the DHSS experienced cuts to its staff during the early 1980s. However, the Wilkes Report had been published before the staff reductions, and the DHSS considered acute services for cancer too important to stop working towards publishing a report.276

The Advice: ‘No Advantage in Promoting a Large Increase in Hospices’277

The terms of reference for the working group dealing with terminal care were to consider the organisation of primary, continuing and terminal care services for cancer. However, in its report the working group concentrated solely on terminal care services. After an introduction to the basic principles of terminal care, which included aspects such as pain management and the role of the patient’s family, a chapter was used to describe the various places where terminal care could be provided. The working group presented the view that no single superior place to die existed, because this depended on the preferences of individual patients and their families. However, it was considered problematic that around 60 percent of all deaths took place in hospitals, whereas ‘many people feel that the ideal death is one which occurs peacefully in your own bed’.278 Around 50 hospices and specialist units for terminal care were in use when the working group wrote its report. The working group rejected the idea that more hospices had to be built to enable a larger proportion of the terminally ill to be catered for. Their main

Committees. 276 Working Group on Acute Services for Cancer, 1984; TNA: MH 160/1400; TNA: MH 160/1401; TNA: MH 160/1402; TNA: MH 160/1403; TNA: MH 160/1404; TNA: MH 160/1405; TNA: MH 160/1406; TNA: MH 160/1407; TNA: MH 160/1408. 277 Standing Medical Advisory Committee, 1980, p.23. 278 Standing Medical Advisory Committee, 1980, p.6.

74 argument was that the promotion of a substantial growth of the number of hospices was undesirable due to the lack of trained staff and the shortage of reliable sources of funding. Additional drawbacks of hospices or specialist units mentioned were that some patients found the idea of admission to such an institution distressing and that it could be disadvantageous to separate terminal care from other elements of patient care. The working group summarised that the elements of good terminal care had to be in place if satisfactory care for the dying was to be provided, but that a special unit was not a prerequisite for achieving this. The recommendations acknowledged the possibility that voluntary groups might wish to establish hospices, even if this was not encouraged by the DHSS. Therefore, the working group suggested that people who were considering establishing such units had to ensure that sufficient resources and expertise to support their work were available. The Wilkes Report also contained recommendations regarding the pattern of future provision of terminal care. It advised that the principles of terminal care, especially techniques for pain and symptom control, would be disseminated throughout the health service. An integrated system of care in which coordination took place between primary care providers, hospitals and hospices, would have to develop. The role of existing hospices would be that of centres of expertise that conducted research and provided training programmes. Given the differences between various localities, it was judged most appropriate that the RHAs would be allocated the responsibility to plan for terminal care provision, including NHS as well as voluntary resources, in their region. It was stated explicitly that the RHAs should consult with the voluntary bodies that funded terminal care services. The idea that terminal care services had to be planned at a local level rather than by the DHSS was relatively undisputed and well received by the leaders of the hospice movement.279

Responses to the Advice

We may find it surprising that the Wilkes Report, which had been written in cooperation with several pioneers of the hospice movement, cautioned against the proliferation of hospices and special units for the dying. On the one hand, this line of argument was clearly influenced by the perceived lack of skilled and experienced staff.

279 The National Association of Health Authorities in England and Wales, 1986.

Concerns about this issue had been raised before and the problem was aggravated by the fact that some of the doctors involved were getting close to retirement age.280 On the other hand, however, Cicely Saunders’ views on feeding techniques and approaches for better care of the dying back into the NHS illustrate that spreading the knowledge developed in the hospices was part of the mission of the hospice movement.281 During the first National Conference on Hospice Finance and Administration in 1981, Cicely Saunders took the following position in response to the Wilkes Report:

I agree with Professor Eric Wilkes of St. Luke's Nursing Home in Sheffield, Chairman of the Department of Health and Social Security's Working Party on Terminal Care, that we do not want a great proliferation of hospice buildings. I know that sounds mean coming from someone from St. Christopher's but above all we want to spread care and too many buildings might stand in the way of doing that. We will have to give care in a variety of ways if it is to be integrated into the general hospitals and the general community services. It will spread in the right, relevant way and we must search for what is right in our own situation.282

From Advisory Report to Policy

Despite being an advisory report, the Wilkes Report was - in the end - rather successful in becoming the official policy for terminal care during the 1980s. In a debate in the House of Commons in 1986, J. Major, who was Under-Secretary of State for Health and Social Security at that time, stated:

The Department's policy on terminal care was clearly and crisply set out in the 1980 Wilkes Report, which recommended an integrated system of care to be developed by health authorities, with an emphasis on co-ordination between the primary care sector, the hospital sector and the hospice movement.283

Two years later, the government claimed to be firmly committed to providing a full range of good care services for people who were dying from any illness and claimed that their initiative had started when establishing a working group of the SSC to

280 Twycross, 1980; TNA: MH 156/467, Minute by A. Hurst on future plans for hospices and continuing care meeting at St. Christopher’s Hospice, 13 September 1976. 281 Saunders & Baines, 1983, p.v; Taylor, 1983, p.36. 282 Saunders, 1982, p.5. 283 HC Deb, 25 July 1986, vol 102, cols 903-909.

76 consider the organisation of terminal services for cancer.284 What we see here is that the government claimed the credit for the establishment of the working group led by Wilkes. However, the SMAC and its subcommittees were generally operating in a rather autonomous way. Moreover, meeting notes of the SSC show that the decision to respond to the WHO recommendation that member states would prepare ‘cancer policies’ by writing three reports, of which one was to deal with terminal care, was made by the SSC itself.285 Initially, however, the DHSS and the government had shown less appreciation of the Wilkes Report. For instance, the government did not officially adopt the Wilkes Report as policy after its publication, which may be explained by its financial implications.286 Although the report had been circulated throughout the NHS and summaries were published in medical journals, the first concrete follow up measure, a conference on care for the dying convened jointly by the DHSS and the National Association of Health Authorities in England and Wales (NAHA) only took place in December 1985.287 Although no explicit reason for the temporal gap of almost five full years between the publication of the Wilkes Report and the conference was given, it is likely that this conference was a response to the relatively limited implementation of the recommendations made in the report. In 1980, there were 55 independent hospices, but by 1988 their number had more than doubled to 125. After this period, the number of hospices stabilised.288 Although the increase in the number of home care teams and hospital support teams was even more striking during this period,289 this development can be taken as an indication that the Wilkes Report had not halted the foundation of independent hospices.290 Moreover, local enthusiasm291 dominated rational planning,

284 HC Deb, 23 June 1988, vol 135, cols 1360-1366. A similar argument was made in 1990: HC Deb, 09 November 1990, vol 180, cols 304-310. 285 TNA: MH 160/1401. 286 Taylor, 1983, p.37; Wormald, 1982. 287 Royal College of General Practitioners, 1980; Health Circular: Health Services Development: Terminal Care, HC(87)4, February 1987; HC Deb, 23 June 1988, vol 135, cols 1360-1366. 288 Clark, 1993b, p.6; Clark, Small, Wright, Winslow & Hughes, 2005, pp.68-69. 289 23 home care teams and 5 hospital support teams existed in the United Kingdom in 1980. In 1988, over 231 home care teams and over 20 hospital support teams were known (Kearney, 1989, p.25). 290 Higginson, 1993, pp.4-5; Kearney, 1989, p.25. These developments show a remarkable degree of resemblance to those related to the care for older people in general. Despite the wish to strengthen community care, the actual funding arrangements meant that the institutional alternative was more attractive to many old people. This resulted in a

77 which resulted in an uneven distribution of these institutions around the country.292 During a Witness Seminar in 2013, R. Hillier, who had been a consultant in palliative medicine at Countess Mountbatten House in Southampton from 1976 to 2003, said that the conference convened by the DHSS and NAHA ‘had a considerable impact on thinking about where palliative care/hospices/terminal care was going’.293 It is relevant to discuss the ideas on hospices put forward during this meeting in this thesis as they signify a substantial change compared to the recommendations made in the Wilkes Report.

Discussions on Hospices during the DHSS/NAHA Conference on Care for the Dying

This conference attracted an audience of over 1,200 people and aimed to bring people from the NHS and voluntary groups together to discuss how each could maximise its contribution to terminal care. Fourteen people, representing a range of organisations and perspectives, gave presentations. One of the differences between the recommendations made in the Wilkes Report and the views expressed during the conference is the attitude to the desirability of the establishment of hospices. B. Edwards, Regional General Manager of Trent RHA, for example, said:

Hospices seem to be springing up all over the country. Yet this upsurge in community interest needs to be channelled within a flexible strategic framework with a view to ensure a reasonable geographic spread of services and economic viability.294

Although he reminded the audience that hospices were only one aspect of a broader range of services for the dying, he made practical suggestions about what RHAs could do to help the hospice movement. These included aspects such as providing a secure

substantial growth of the number of private sector residential and nursing homes available. Between 1978 and 1999, independent nursing home places rose from 26,100 to 213,300, whereas between 1988 and 1999, the number of NHS long-stay beds for older people was reduced from 80,700 to 36,900 places (Davies & Seymour, 2002, pp.8-9). 291 Media coverage of care provided by hospices was one of the enabling factors for this development (Broad, 1981, p.146; Lamerton, 1986, p.7). 292 For example: Lunt & Hillier, 1981; Smith, 1984; "National Health Service: Cooperation between the NHS and the private sector at district level”, 1983. 293 Overy & Tansey, 2013, pp.30-31. 294 The National Association of Health Authorities in England and Wales, 1986, p.5.

78 financial foundation, providing a strategic framework for the development of hospices, and facilitating the integration into the wider network of services for the dying.295 E. Wilkes spoke at the conference as well. In forecasting the development of terminal care services in the next decade, he claimed: ‘If there is a careful reconnaissance of need by both voluntary and statutory sectors, I see fewer new hospices by far in the next decade than in the last.’296 However, the relatively strong stance against the expansion of the number of hospices that had been evident in the 1980 report was absent from this talk.297 Some speakers warned against the uncontrolled expansion of hospices, but most conjoined with the view that the establishment of further hospices could be a feasible option to meet the need for care for the dying and that the health authorities had to make sufficient funds available to support these voluntary organisations.298 The Minister of Health, B. Hayhoe, also addressed the conference. He reconfirmed that the RHAs had to make an assessment of the services the voluntary sector was providing and could provide in the future. If the voluntary sector was found to fulfil part of the need, health authorities had to make a reasonable contribution to the costs involved and ensure that a secure financial foundation for the hospice movement was created. This stance was in line with general NHS policy, which in 1981 had given RHAs the possibility to make funds available to their DHAs in order to pay for outside contractual provision of care, which was often delivered by the independent sector, if that was to contribute economically and effectively to the care of NHS patients.299 The assessments of the availability of terminal care had to become part of the strategic plans of the health authorities and the Minister announced during the conference that he was going to look for evidence that the regions and their districts were actually making such plans.300 This announcement was the first time that the government explicitly assigned the NHS a role in collaborating with the voluntary sector to implement the practices the hospice movement advocated.301 It also foreshadowed the end of the relatively obligation free

295 The National Association of Health Authorities in England and Wales, 1986, p.5. 296 The National Association of Health Authorities in England and Wales, 1986, pp.3-4. 297 The National Association of Health Authorities in England and Wales, 1986, pp.3-4. 298 The National Association of Health Authorities in England and Wales, 1986. 299 Taylor, 1983, pp.16-17; Wormald, 1982; "National Health Service: Cooperation between the NHS and the private sector at district level”, 1983. 300 The National Association of Health Authorities in England and Wales, 1986. 301 HC Deb, 09 November 1990, vol 180, cols 304-310.

79 approach that the DHSS had taken towards the Health Authorities regarding the provision of terminal care during the previous period. This changed officially in 1987 with the publication of the first circular concerned with terminal care: from an expectation that the Health Authorities would ensure that appropriate care would be available for the terminally ill, it became a matter of these bodies having to ensure that this care was provided.302 This circular and its impact on the development of palliative care are the topics of Section 2.6. In sum, the views presented during the Conference on Care for the Dying in 1985 indicate that the existence and proliferation of hospices were regarded to be less problematic than five years earlier. Moreover, the quick expansion of the voluntary, in patient hospices seemed to be regarded as a matter of fact. The Tory policy to pay for care provided to NHS patients by independent providers was a major factor that enabled this change. During the years that followed, the hospices strengthened their position within the health care landscape and the call to commit public funding for the hospices grew stronger from the late 1980s. These developments are discussed in more detail in Section 2.6.

2.6 Public Funding and the Relationship between Independent Providers of Palliative Care and the NHS

Raising Resources to Fund Independent Hospices

During the 1980s, it turned out to be increasingly difficult for independent hospices to raise sufficient funds to balance the books. One of the reasons was that hospices, which had been able to find funding for their premises through charitable giving, now

302 This shift can be illustrated by the different phrases the (Under) Secretaries of State for Health and Social Services used to refer to the duty of the health authorities in this regard: In 1985, J. Patten said: ‘We expect all district health authorities to ensure that appropriate care is provided for the terminally ill.’ (HC Deb, 08 May 1985, vol 78, col 451W). Less than two years later, however, E. Currie claimed: ‘Where a voluntary group provides a service that represents an essential element in a health authority's overall plans for terminal care, the health authority should agree with them a contribution to the costs of that service.’ (HC Deb, 13 March 1987, vol 112, col 644-645).

80 had to raise the money to cover the running costs of their services. Obtaining sufficient resources from charitable giving to pay for these ongoing expenses proved to be difficult. Moreover, some Health Authorities contracted with the hospices on terms that were relatively unfavourable for the latter.303 In response to this situation a national charity named Help the Hospices304 was established in 1984 by a number of people involved in the hospice movement. Help the Hospices aimed to lobby for the independent hospices and to support them by providing grants.305 These developments took place in a context of limited availability of resources for the NHS. This also impacted on the funding hospices could expect to receive from the Health Authorities. Therefore, payments from the NHS were often unpredictable in the sense that they could change from year to year and that formal long term commitments were often absent.306 At the first National Conference on Hospice Finance and Administration in 1981, the DHSS Under Secretary for Health Services - P. Wormald - had sounded a clear warning when he said:

One important point arising from this rather gloomy picture is that anyone thinking of establishing or expanding a hospice service should give careful thought to their sources of running costs as well as to the capital expenditure. When authorities have many hard choices to make, it is no use just assuming that they will be able to pick up part of your bill under a contract. If your project depends on authority support, you must talk to them first, and establish how firm a promise of help they can give, and what services they are interested in.307

Health Circular HC(87)4308

In February 1987, Health Circular HC(87)4 was sent to the general managers of the Health Authorities. Its publication was a result of the conference that the NAHA and

303 Clark & Seymour, 1999; Lunt, 1981, p.1. An example of such unfavourable terms is that many Health Authorities did not contract for a specified number of beds for a determined time period, but would only pay for the usage of beds when they were occupied by NHS patients (Taylor, 1983, pp.16-17). 304 The organisation changed its name into Hospice UK in 2014. Moreover, also NHS hospices could become members from this moment. 305 Clark, Small, Wright, Winslow & Hughes, 2005, pp.98-101. 306 Lunt, 1982, p.36; Smith, 1984. 307 Wormald, 1982, p.48. 308 Health Circular: Health Services Development: Terminal Care, HC(87)4, February 1987. All claims in this subsection are based on this document, unless mentioned otherwise.

81 the DHSS had organised in 1985. The circular required the Health Authorities to examine the existing services for terminally ill patients and develop an integrated plan to eliminate any deficiencies identified. The Health Authorities had to include their plans and report on indicators such as the number of nurses specialising in terminal care and arrangements in place for financial support of hospices as part of their ‘short term programmes for 1988/1989’. The circular also stipulated that the Health Authorities had to ensure that an appropriate range of services to meet the needs of terminally ill patients was available. Although the Health Authorities were free to decide on the mix suitable in the context of their circumstances, it was suggested that this mix might include at least specialist support for terminally ill patients at home, in day care and at inpatient facilities. Collaboration with the voluntary sector in the planning and provision of such services had to be sought. If a voluntary sector organisation delivered a service that represented a crucial element in the Health Authority’s plan for terminal care, the Health Authority had to contribute to the costs of running that service. However, no additional financial resources were awarded to the Health Authorities for this purpose. The reasoning behind this was that substantial resources were already being devoted to care for the dying. Integrated planning of terminal care services was supposed to result in an increasingly effective usage of these resources. Health Authorities were, however, free to change their financial allocations if they thought that this better suited their priorities.

Matching Charitable Funding for Independent Hospices

The publication of Circular HC87(4) initially meant that Health Ministers could respond to the increasing number of questions by MPs on support for hospices by saying that the Health Authorities had been told to provide.309 However, as additional money had

309 HC Deb, 19 February 1987, vol 110, cols 1150-1158; HC Deb, 10 March 1987, vol 112, cols 143-4; HC Deb, 13 March 1987, vol 112, col 644-645; HC Deb, 23 June 1988, vol 135, cols 1360-1366. The rising number of questions cannot only be attributed to the financial difficulties reported by the hospices. Also the growing number of young people dying from AIDS and the public attention to this problem attracted, contributed to putting this issue on the political agenda (HC Deb, 19 February 1987, vol 110, cols 1150-1158; HC Deb, 07 April 1987, vol 114, cols 151-153; HL Deb, 01 April 1987, vol 486, cols 599-658; HL Deb, 07 November 1988, vol 501, cols 473-475).

82 not been made available specifically for the hospices and the financial situation of many DHAs was worse during 1987 and 1988 than during the previous years.310 Although over half of the RHAs indeed started developing plans for the provision of terminal care in their region,311 it soon became clear that the publication of the Circular would not resolve the financial problems of the hospices.312 Therefore, political pressure to support the hospices built up rather quickly over the years that followed.313 An additional reason for concern was the implementation of a redesigned payment structure for nurses in the NHS in 1989. Since independent hospices had to recruit their employees from the same labour force, their conditions of employment could not be substantially less attractive than those offered by the NHS.314 The figure of extra expenses of around £100,000 a year for an average sized hospice as consequence of the pay award circulated.315 To avoid that hospices in the less affluent areas of the country were unable to cover these costs and had to reduce the number of beds or may have to close down completely, the government decided to make additional resources available to the DHAs.316 A sum of around £1.4 million was first made available in the 1988/89 budget. These monies had to cover the additional costs incurred due to the nursing pay award in independent hospices that the DHAs had supported regularly in the past.317 When the financial situation of the NHS improved with the Autumn Statement of 1988, this created the circumstances under which more significant measures with regard to

310 Currie, 2002, pp.20-21 & 60-63. 311 Edwards, 1992; Hillier, 1988; Standing Medical Advisory Committee & Standing Nursing and Midwifery Advisory Committee, 1993, p.30. 312 HC Deb, 08 December 1987, vol 124, cols 351-355; HC Deb, 09 November 1989, vol 159, col 749W; HL Deb, 31 October 1989, vol 512, cols 205-232. 313 HC Deb, 06 December 1989, vol 163, col 277W; HC Deb, 12 December 1989, vol 163, col 629W; HC Deb, 21 December 1989, vol 164, cols 375-376W; HC Deb, 16 January 1990, vol 165, col 193W; HC Deb, 20 February 1990, vol 167, cols 706-7W; HC Deb, 09 November 1990, vol 180, cols 304-310. 314 Surtees, 1995, p.59. 315 Although calculations were not provided to justify this number and it was used in political debate, we cannot reject it as mere rhetorics. The 7-bed St. Wilfrid’s Hospice, for example, estimated that it would have to raise at least another £20,000 to cover the costs of the nurse’s pay award (Surtees, 1995, p.59). 316 Clark, 1993b, p.6; HC Deb, 10 May 1988, vol 133, cols 138-41; HC Deb, 14 June 1988, vol 135, cols 153-155; HC Deb, 01 November 1988, vol 139, cols 812-814; HC Deb, 26 January 1989, vol 145, cols 1173-1174; HL Deb, 15 June 1988, vol 498, cols 264-268. 317 HC Deb, 20 February 1989, vol 147, cols 524-525W; HC Deb, 21 March 1989, vol 149, col 572W; HC Deb, 25 July 1989, vol 157, col 662W.

83 the funding of independent hospices could be taken.318 At that time, the hospice movement was lobbying the government for 50 percent public funding. The rationale behind this strategy was that a more substantial share of public funding was thought to give the Department of Health319 (DH) too much influence.320 Thus, when the Scottish Office announced that it would match pound for pound the support given to the ten Scottish hospices by the public, it only seemed to be a matter of time before a similar arrangement would come into place in England.321 The announcement by the Minister of Health followed in December 1989. At that time, a grant of £8 million was given to the Health Authorities to support care in hospices during the financial year 1990/1991. These monies had to support the establishment of partnerships between DHAs and independent hospices in which public funds matched charitable giving. Moreover, the money was earmarked for the support of terminal care provided by voluntary organisations, but the DHAs would decide on its allocation to individual hospices. The DH issued some general guidelines about the allocation and claimed to monitor Health Authorities’ progress and plans. Nevertheless, the DH did not set a deadline for the matching of voluntary giving by public funds to be achieved.322 During the early 1990s, a period in which the overall expenses for the NHS were allowed to increase faster than during the previous years,323 a relatively quick succession of awards of earmarked, additional financial resources to Health Authorities to support hospices took place. Although no assurance was given that the award of earmarked additional funds would continue indefinitely, the height of these allocations was increased to £17 million for 1991/1992, £32 million for 1992/1993, and £43 million for 1993/1994.324 The latter amount included £32.3 million for voluntary

318 Currie, 2002, p.161. 319 The DH superseded the DHSS in 1988. 320 Overy & Tansey, 2013, pp.36-39. 321 HC Deb, 09 November 1989, vol 159, col 749W; HC Deb, 23 January 1990, vol 165, col 724; HC Deb, 20 March 1990, vol 169, cols 1003-100; HC Deb, 09 November 1990, vol 180, cols 304-310; HL Deb, 26 October 1989, vol 511, cols 1549-1550; HL Deb, 31 October 1989, vol 512, cols 205-232; HL Deb, 15 November 1990, vol 523, cols 545-564. 322 HC Deb, 15 December 1989, vol 163, cols 846-847W; HC Deb, 23 January 1990, vol 165, col 724; HC Deb, 08 February 1990, vol 166, cols 771-772W; HC Deb, 20 March 1990, vol 169, cols 1003-1005; HC Deb, 09 November 1990, vol 180, cols 304-310; HL Deb, 15 November 1990, vol 523, cols 545-564; HC Deb, 01 February 1993, vol 218, col 70W. 323 HC Deb, 09 November 1990, vol 180, cols 304-310. 324 National Association of Health Authorities and Trusts, 1991, pp.9-10; HC Deb, 05 February 1991, vol 185, cols 152-153; HC Deb, 18 November 1991, vol 199,

84 hospices. The remaining money was split almost equally between palliative care as part of community care and a trial scheme that made drugs available free of charge to the hospices.325 For the financial year 1994/1995, the height of the allocation rose less sharply as it was determined at £48 million. Moreover, the allocation was no longer earmarked for palliative care. A year later, this funding arrangement ceased to exist and resources to fund hospices were included in the Health Authorities’ baseline budgets.326 This move was justified as a way of enabling the Health Authorities to commit to three-year contracts with voluntary hospices instead of negotiating on an annual basis.327 However, it can also be argued that the idea of ring fenced monies was increasingly at odds with the way in which the NHS operated since the implementation of the purchaser-provider split (see below) and therefore fell out of favour. The publication of Circular HC(87)4 and the announcement of earmarked funding for voluntary hospices made palliative care less of an issue on the political agenda, but the financial issues experienced by the hospices were not necessarily resolved by these measures. It would, for instance, take several years before the financial resources could be accessed by the providers of terminal care.328 Another issue was that the actual developments for individual hospices depended on decisions made by the DHAs in their area.329 Issues about the allocation of these resources were also raised by Help

cols 42-43W; HC Deb, 25 November 1991, vol 199, col 389W; HC Deb, 23 November 1992, vol 214, col 509W. This rapid increase can probably be explained by the fact that the £8 million that was made available at the time of the announcement was - even in combination with the resources the DHAs did already award to hospices - far from reaching a 50/50 division between statutory and voluntary funding (HL Deb, 31 October 1990, vol 522, cols 1844-1847; HL Deb, 15 November 1990, vol 523, cols 545-564). 325 HC Deb, 02 April 1992, vol 222, col 470W; HC Deb, 26 January 1993, vol 217, col 965; HC Deb, 01 February 1993, vol 218, col 70W. 326 National Council for Hospice and Specialist Palliative Care Services, 1994; HC Deb, 31 October 1995, vol 265, cols 94-95; HC Deb, 06 November 1995, vol 265, cols 637W-638W; HC Deb, 30 January 1996, vol 270, cols 714-715W; HC Deb, 02 June 1998, vol 313, col 174W. 327 HC Deb, 04 February 1993, vol 218, cols 579-586. 328 HL Deb, 31 October 1990, vol 522, cols 1844-1847. 329 The situation of St. Wilfrid’s Hospice in Eastbourne provides an example. The Eastbourne Health Authority repeatedly claimed that no money designated for hospices had been received or that this money was only to be allocated to hospices in deficit. This resulted in a situation in which only 2 percent of the hospice’s income came from the Health Authority. This changed in July 1990, when St. Wilfrid’s Hospice received £590,000 from the RHA to cover extra nursing costs and to develop a day centre (Surtees, 1995, pp.67-84).

85 the Hospices. This umbrella organisation voiced the following concerns: Some DHAs allocated a share of the money to NHS hospices rather than to voluntary hospices, the idea of pound for pound matching was undermined as the resources had been used for new palliative care services that had not been planned at the time the government had made its commitment, and some DHAs seemed to be using the earmarked monies to reduce the support they had previously been giving out of their mainstream funding.330 The intention to match charitable fund raising for independent hospices by NHS contributions had several consequences. The earmarked money was supposed to give the DHAs an instrument that could help them implement a planned provision of palliative care in their district, because they did not have to allocate money to every provider. This was to ensure that the unplanned proliferation of hospices as had happened during the previous decades could be controlled.331 This was particularly important as the financial commitment itself was unlimited, and without further measures it could have simulated the extension of voluntary hospice care.332 Data on the usage of this instrument and its consequences for individual hospices were not obtained at the time. Therefore, a causal relationship cannot be established between this financial instrument and the total number of hospices, which - as mentioned before - stabilised during the early 1990s.

Impact of the Introduction of the NHS Internal Market on Independent Hospices

The funding arrangements fostered a closer relationship between the NHS and the independent hospices. The consequences of this development will be discussed later in this subsection. However, these funding arrangements were not the only reason that this relationship changed. Developments within the hospices themselves and palliative care more generally also contributed to this shift. As hinted at in Section 2.3, the diversification of palliative care services resulted in a changing role for the inpatient hospice. They increasingly came to be regarded as places where the patients with the most complex needs would be cared for. Others could be admitted for a limited time period to ensure their pain could be controlled by medication. Other terminally ill

330 Clark, 1993b ; Clark & Seymour, 1999, p.138. 331 Clark, 1991; National Association of Health Authorities and Trusts, 1991, pp.9- 10; HC Deb, 20 March 1990, vol 169, cols 1003-1005; HC Deb, 15 October 1990, vol 177, col 649; HC Deb, 23 November 1992, vol 214, col 509W. 332 Clark & Seymour, 1999, p.138; Clark, Small, Wright, Winslow & Hughes, 2005, pp.70-71.

86 patients would, however, be cared for in their own homes by the palliative home care teams. Although hospices did not completely loose their community based and religious character, they increasingly turned into medical institutions.333 Related to the developments described in the previous paragraph, was the recognition of palliative medicine as a medical specialism by the Royal College of Physicians in 1987.334 This recognition was considered important for the field as it would provide medical credibility and would offer a recognised career path for doctors entering the field.335 The number of doctors - in whole-time equivalents - registered to be specialising in palliative medicine increased quickly during the early 1990s. From 22.2 doctors in 1989, the first year for which these data were collected, their number rose to 55.5 doctors in 1992.336 Consultant appointments and training posts were not only made in independent hospices, but also within the NHS. This strengthened the link between palliative care and the NHS.337 Additionally, other elements of the infrastructure characterising a medical specialism were developed during this period. The peer reviewed journal Palliative Medicine started publishing in 1987 and the Oxford Textbook of Palliative Medicine was first issued in 1993.338 The conceptual distinction between palliative care and palliative medicine has been a matter of debate. However, for this thesis, the main relevance of this development is that it illustrates that the care provided in hospices became regarded primarily as a medical undertaking. A result of the closer relationship between independent hospices and the NHS was that the health care reform that established the purchaser-provider split had a significant impact on the development in hospices as well. From April 1991, an internal market was implemented in the NHS by the Conservative government. This meant that the DHAs relinquished the managerial responsibility for the hospitals and became purchasers of care for their resident populations. In this role they were joined by GP fundholders. For palliative care, the implementation of the internal market was delayed given the existing grants to Health Authorities, but in February 1993, it was announced that the funding for specialist palliative care would be built into the Health Authorities’

333 Authors have referred to these developments with terms such as the medicalisation and secularisation of hospice care. See for example: Abel, 1986; Biswas & Ahmedzai, 1993; Clark & Seymour, 1999, pp.104-124; Clark, 2002; James & Field, 1992. 334 Working Group of the Research Unit of the Royal College of Physicians and the Association for Palliative Medicine, 1991. 335 Overy & Tansey, 2013. 336 HC Deb, 09 December 1993, vol 234, cols 325W-326W. 337 Finlay, 2001; Overy & Tansey, 2013, p.33. 338 Doyle, Hanks & MacDonald, 1993.

87 general allocations.339 The Health Authorities were expected to assess the local needs and commission appropriate levels of palliative care using three-year rolling contracts whenever possible.340 Although such contracts could create a more stable financial base for the hospices, the changes also posed a risk to the hospices. Their ‘special position’ with protected, earmarked funding had been lost and competition between independent hospices and NHS hospices could intensify in the future as commissioners were free to look at alternative providers if they wished.341 Concerns were also raised that hospices based in affluent and volunteer rich areas might be better able to negotiate contracts with the NHS than their counterparts in poorer areas. In that case, the availability of hospice care would not mirror the needs of an area.342 Another issue for hospices was that, although they had welcomed patients from various districts before the changes, the number of bodies to contract with grew due to the health care reforms.343 Moreover, some people involved in the hospice movement feared that the independence of the hospices would come under threat.344 Although the changes and their predicted consequences were reported to be a source of anxiety within the hospice movement, the hospices seemed to adjust rather quickly to the new situation.345 A survey of hospices and palliative care units in the United Kingdom, which was conducted in 1995, found that only three out of 128 responding organisations did not have a contract with a purchaser. The majority had contracts with one purchaser, but around 30 percent had contracts with two or more purchasers. However, contrary to the guidance given to the purchasers in circulars, only 37 percent of hospices had contracts for three years; one year contracts had been negotiated in the majority of the other institutions. Moreover, the equal partnership between the NHS and the voluntary sector did not seem to have been achieved if we look at the income that independent hospices received from NHS contracts. For independent hospices the mean income from NHS sources was 38 percent of their total income.346

339 HC Deb, 30 January 1996, vol 270, cols 714-715W; HL Deb, 15 November 1990, vol 523, cols 545-564. 340 National Council for Hospice and Specialist Palliative Care Services, 1994; HC Deb, 06 November 1995, vol 265, cols 637W-638W. 341 HC Deb, 26 June 1996, vol 280, col 370. 342 Clark, 1993b, pp.142-143; HC Deb, 10 May 1995, vol 259, cols 863-864. 343 Clark & Seymour, 1999, p.149; HC Deb, 09 November 1990, vol 180, cols 304- 310. 344 For example: Clark, 1991; Clark, 1993a, pp.175-176. 345 Anning, 1998; Clark & Seymour, 1999, pp.128-129. 346 Clark, Small & Malson, 1995; Clark, Malson, Small, Mallett, Neale & Heather,

Looking back on these developments, D. Clark, who had been involved in conducting the 1995 survey, stated:

At the dawn of the Conservative reforms of the 1990s the position was crystallised completely: join the contract culture or be condemned to obscurity. The independent hospices, after the briefest of vacillations, climbed on board and rarely looked back.347

Thus, the hospice movement seemed to embrace these changes, but this move was taken out of necessity as those involved feared that at least some hospices would be unable to survive or had to scale down without a substantial contribution from public sources. However, also the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS),348 which took over the lobbying for hospices from Help the Hospices,349 and other umbrella organisations contributed to strengthening the connection between hospices and the NHS.350 In 1990, for example, Help the Hospices urged Health Authorities to allocate resources only to the voluntary hospices that fitted their planning.351 Additionally, the Cancer Relief Macmillan Fund sought to establish - and fund - regional coordinators for palliative care in most RHAs.352 Moreover, these organisations drew up definitions of various forms of palliative care and developed standards for the care delivered by certain providers.353 The first publication of the NCHSPCS consisted of guidelines for voluntary hospices on contracting with the NHS.354 From 1995, the NCHSPCS also tried to influence the purchasers of care and published a series of papers with information about specialist palliative care services and visits to around 75 percent of all purchasing authorities were paid by its

1997; Clark & Seymour, 1999, pp.149-150. 347 Clark & Seymour, 1999, p.150. 348 This organisation was founded in 1991 as a national multidisciplinary, representative and coordinating body for hospices and other palliative care services. In contrast to Help the Hospices, it did not only represent independent hospices. Also NHS hospices and organisations such as the Cancer Relief Macmillan Fund and Sue Ryder Care were among its membership (Clark, Small, Wright, Winslow & Hughes, 2005, pp.101-103). 349 Overy & Tansey, 2013, pp.36-39. 350 Ford, 1998, p.52; Mathew, Cowley, Bliss & Thistlewood, 2003. 351 James, 1994, p.114. 352 James, 1994, p.116; Standing Medical Advisory Committee & Standing Nursing and Midwifery Advisory Committee, 1993. 353 James & Field, 1992; National Council for Hospice and Specialist Palliative Care Services, 1994; National Council for Hospice and Specialist Palliative Care Services, 1995; Working Group of the Research Unit of the Royal College of Physicians and the Association for Palliative Medicine, 1991; Working Party on Clinical Guidelines in Palliative Care, 1995b. 354 National Council for Hospice and Specialist Palliative Care Services, 1992a.

89 members.355 As a consequence of the developments described above, the relationship between independent hospices and the NHS became increasingly tight. The relative financial security this offered did not come without obligations. In practice, this meant, for example, that independent hospices were held accountable for the way in which they spent public money, which resulted, for instance, in increased attention to quality assurance and the evaluation and auditing of the services provided.356

2.7 Cancer Policies and Health Care Reforms

Introduction

The previous section ended with a description of the impact of the introduction of the NHS internal market on the independent hospices during the early 1990s. It can be argued that by that time all main characteristics of the institutional set up of palliative care in England as we know it nowadays were in place. Various models of service provision had been established, their numbers were stabilising, and it was clear that the independent hospices would receive part of their funding from the NHS. This public funding meant that the hospices were held accountable for their use of the money. Moreover, independent hospices had developed into medical institutions that were closely connected to medicine and the NHS. Nevertheless, this did not imply that all issues around palliative care had been resolved by this time or that the situation remained stable during the decades that followed. These developments have taken place relatively recently, which makes it harder to assess their impact from a historical perspective. Therefore, this section covers only some of the main lines of the developments related to palliative care that took place during the past two decades and that promise to be of interest to the comparison with

355 Clark & Seymour, 1999, p.149; National Council for Hospice and Specialist Palliative Care Services, 1995; Working Party on Clinical Guidelines in Palliative Care, 1995a; Working Party on Clinical Guidelines in Palliative Care, 1995b. 356 Clark, 1993b, pp.133-134; James & Field, 1992; National Council for Hospice and Specialist Palliative Care Services, 1992b; National Council for Hospice and Specialist Palliative Care Services, 1993b; Working Party on Clinical Guidelines in Palliative Care, 1995b.

90 the Dutch developments. This means that I decided to provide less detail when describing, for instance, policies or advisory reports in this section than in the previous ones as the choices made in the latter impacted more significantly on the organisation of palliative care in England. The issues covered in the following subsections are plans to extend palliative care to patients suffering from non-malignant diseases, the impact of policy programmes, and the latest developments with regard to the allocation of NHS funds to independent hospices. In the final subsection an example of a newly developed model of palliative care in England is discussed.

Extending Palliative Care beyond Cancer

From the early 1990s, the idea that the principles of good palliative care should be extended to all terminally ill patients and not be limited to those suffering from cancer gained ground.357 It was in this context that the Secretary of State for Health asked the SMAC and the Standing Nursing and Midwifery Advisory Committee (SNMAC) in 1991 to prepare a joint report on the organisation of palliative care services.358 The Secretary of State acknowledged that the Health Authorities’ support for palliative care services had been uncoordinated and unplanned and that palliative care services had expanded rapidly, but patchily since the publication of the Wilkes Report. Hence a consideration of the principles, needs and practice of these services in the NHS was thought necessary. The Secretary of State also requested that the report should not be limited to patients dying from cancer, but should look at the care for all dying patients whatever the cause of their death. The report prepared by the SMAC and SNMAC, entitled The Principles and Provision of Palliative Care, was published in 1993. One of the chapters dealt with the various models that could be used to provide palliative care. These included generalist providers of care, such as the GP and district nurse, as well as specialist providers like palliative care teams in hospitals and voluntary hospices.359 The recommendations in this report underlined that all patients requiring palliative care should have access to palliative care services. This did not only mean that palliative care was not solely for

357 Calman, 1992; Dunlop, 1993; Edwards, 1992; Griffin, 1992; HC Deb, 04 February 1993, vol 218, cols 579-586. 358 HC Deb, 21 January 1992, vol 202, cols 143-144W. 359 Standing Medical Advisory Committee & Standing Nursing and Midwifery Advisory Committee, 1993, pp.21-23.

91 cancer patients, but also implied that purchasing authorities were expected to ensure that various service providers - specialist as well as generalist - were able and available to provide this care. Moreover, palliative care services had to be developed as part of the standard NHS offer. The SMAC and SNMAC suggested that funding would have to be made available for independent hospices, but that their independence had to be safeguarded.360 The SMAC SNMAC report as such does not seem to have had a major impact on the provision of palliative care or on the policy debates in England and unlike the Wilkes Report it never reached the status of official government policy. A possible explanation for this finding is that the ideas presented in this report are unlikely to have been labelled as groundbreaking by the people involved in palliative care. The report mostly captured developments that were already taking place rather than offering radically different plans for the future. Publications from the NCHSPCS, for instance, show that this representative body already preferred to define hospice as a philosophy of care rather than a building and paid attention to care in the community for terminally ill people.361 During the years that followed various initiatives were taken to improve palliative care in a range of settings, from hospitals to care homes and general practice, and to become more inclusive of patients dying from other diseases than cancer.362 Integrative studies assessing the impact of these initiatives on care of the dying are not yet available. However, as the 2013 review of the Liverpool Care Pathway363 showed this transfer of the approaches developed in hospices to other care

360 Standing Medical Advisory Committee & Standing Nursing and Midwifery Advisory Committee, 1993, pp.27-29. 361 National Council for Hospice and Specialist Palliative Care Services, 1993a; National Council for Hospice and Specialist Palliative Care Services, 1993b. 362 Addington-Hall, 1998; Department of Health, 2008a; Department of Health, 2008b; Hockley & Clark, 2002; Kennedy, Seymour, Almack & Cox, 2009; National Association of Health Authorities and Trusts, 1991, p.7; National Council for Hospice and Specialist Palliative Care Services, 1996; National Council for Hospice and Specialist Palliative Care Services, 2003; National Council for Palliative Care, 2005a; National Council for Palliative Care, 2005b; Royal College of General Practitioners & Cancer Relief Macmillan Fund, 1995b, pp.18-19; Royal College of General Practitioners & Cancer Relief Macmillan Fund, 1995a; HC Deb, 02 December 1999, vol 340, col 490. 363 The Liverpool Care Pathway was developed during the 1990s and consisted of a set of interventions that aimed to replicate best practices found in hospices in hospitals. However, after severe criticism in the media, which claimed that the Liverpool Care Pathway could be applied as a tick box exercise and may hasten the death of the patient, it was phased out from the summer of 2013. After an independent review, the Liverpool Care Pathway was replaced by guidance that provided five priorities for care of dying patients (Leadership Alliance for the

92 settings has not always proven unproblematic.364 With regard to political debates and policymaking, another reason why The Principles and Provision of Palliative Care did not prove to be particularly influential needs to be taken into account as well. This is that cancer care came to be higher on the political agenda shortly after the publication of this report. Some authoritative reports, which included plans for the improvement of palliative care, were published in that area from 1995.365 The impact of these reports on palliative care is discussed in the following subsection.

Policy Programmes for Cancer and Palliative Care

Despite the initiatives mentioned above to extend palliative care for people dying from non-malignant diseases, governmental policy would soon reinforce the connection between palliative care and cancer.366 Starting with the Calman-Hine Report in 1995, a series of policies on cancer were published.367 They all included measures on palliative care, often accompanied by substantial additional investment of financial resources.368 One of the enabling factors for these investments in palliative care was that the NHS was experiencing a substantial increase of funds since the Labour government had pledged to bring health care spending levels up to the average of European Union

Care of Dying People, 2014). 364 Neuberger, Guthrie, Aaronovitch, Hameed, Bonser, of Pentegarth, Charlesworth-Smith, Jackson, Cox & Waller, 2013. 365 See for an overview of these reports: Van Reuler, 2008. 366 Field & Addington-Hall, 1999; Millar, 1998; NHS Executive, 1996; HC Deb, 19 October 1999, vol 336, cols 238-239. 367 Earlier advisory reports on cancer care that resulted in changes in governmental policy had been published since the emergence of the modern hospices. However, the Bagshawe Report of 1984 was concerned with acute services for cancer. As the Wilkes Report was being prepared by the SMAC at the same time, the Bagshawe Report did not pay attention to palliative care in particular (see Section 2.5). However, the Smithers Report on the organisation of cancer services of 1970 could have had an impact on the organisation of palliative care in England. In this report, terminal care wass addressed explicitly and the value of voluntary agencies was mentioned. Nevertheless, the report recommended care for the dying to remain the responsibility of the medical services that were already providing this care (Central Health Services Council, 1971; TNA: FD 7/1496, SAC(M)SSC(71)6, November 1971). 368 Department of Health, 2000; Department of Health, 2007; Department of Health, 2011; Expert Advisory Group on Cancer, 1995.

93 health spending levels in 2000.369 The Calman-Hine Report itself, however, did not award extra funds, but was important for the formal endorsement of the still young specialism of palliative care in the context of the well-regarded specialism of oncology. This contributed to the acceptance of palliative care within the NHS in a broader sense.370 During a witness seminar, A. Hoy, medical director of the Princess Alice Hospice in Surrey from 1985 to 2010, said about this:

On a personal level, I spent about 12 years banging on the door of my various local hospitals when I was a Medical Director of the Princess Alice Hospice in Surrey, and suddenly when the Calman-Hine Report came out in 1995, I was flavour of the month and everybody wanted to employ me. For 12 years before that: ‘Go away, Dr Death.’ So that was the attitude.371

The following cancer policy was the NHS Cancer Plan, which was published in 2000, shortly after the NHS Plan had been presented.372 Both plans included substantial financial investments. In the NHS Cancer Plan, an extra £50 million a year of NHS money was promised to the hospices and specialist palliative care services. This investment had to reduce inequalities of access to these services in various parts of the country.373 This additional money was warmly welcomed by the hospice movement, because by the late 1990s, funding recurred as a major issue for independent hospices. Governmental funding was dropping as a percentage of total expenditure and the pound for pound matching of charitable giving that had been an element of the policies since the late 1980s had never been achieved. For most hospices the actual contribution from the NHS was around a third of the total costs incurred.374 Moreover, almost all independent hospices were still operating on annual contracts with the NHS. The additional funding that was becoming available for the NHS was seen as a window of opportunity by Help the Hospices to argue in favour of extra money for the hospices. The chief executive and director of services of this organisation claimed: ‘Despite all this evidence that the voluntary sector is footing the state’s bill, there are signs that we are in a transitional stage. At least there is more talk about partnership than ever

369 Klein & Dixon, 2000; Secretary of State for Health, 2000. 370 Overy & Tansey, 2013, p.47. 371 Overy & Tansey, 2013, p.28. 372 Secretary of State for Health, 2000. 373 Department of Health, 2000, p.6. 374 National Council for Hospice and Specialist Palliative Care Services, 1999; O' Dowd, 2000.

94 before.’375 The cancer policies did have a positive impact on the development of palliative care. For instance, the high position of this topic on the policy agenda, did ensure that palliative care remained on the policy agenda as well. Moreover, regional implementation groups that also looked at aspects of palliative care were formed.376 Despite these advantages, these policy programmes also reconfirmed the association between palliative care and cancer, whereas extending palliative care to the dying with non-malignant diseases was something palliative care practitioners as well as policymakers considered desirable (see previous subsection). To achieve this aim, it was decided that palliative care - now re-framed as end of life care to reflect that this care was applicable to all people suffering from advanced disease - required its own policy programme. The NHS ran an End of Life Care Programme from 2004 to 2007 to roll out specific programmes, such as the Gold Standards Framework.377 This End of Life Care Programme resulted from of a commitment to spend £12 million over three years as pledged in the 2003 NHS White Paper Building on the Best.378 More important in terms of raising the profile of palliative care, was the End of Life Care Strategy, which was published in July 2008.379 This document was presented as the first comprehensive national strategy for palliative care and was strongly supported in the field.380 Its aim was to provide all people who were dying with high quality, coordinated care, irrespective of setting or disease. A key phrase in the document was that a ‘whole system approach’ to palliative care had to be aimed for. Additional funds - up to £198 million in 2010/2011 - were promised for the implementation of this strategy. The End of Life Care Strategy was accompanied by an implementation plan, and various activities were set in action after its publication. These activities ranged from the publication of reports on palliative care for patients in specific age groups to

375 Praill & Shaw, 2001, p.29. 376 Finlay, 2001; National Council for Hospice and Specialist Palliative Care Services, 2001; Travis & Hunt, 2001. 377 This framework was developed in 2000 as a grass roots initiative to provide training and information to enable generalist staff in a variety of settings, including primary care, care homes and hospitals, to provide high quality care for people nearing the end of their lives. For further information on the Gold Standards Framework, see: The Gold Standards Framework: Home. http://www.goldstandardsframework.org.uk /home. Accessed 9 August 2016. 378 Department of Health, 2003. 379 Department of Health, 2008b. 380 National Council for Palliative Care, 2014.

95 the creation of new quality indicators.381 The End of Life Care Strategy was a ten year strategy and, therefore, we might expect to see it still in place at the moment this thesis was finished. Technically, the Strategy has not been replaced, but in practice it has already become a page in history. The NHS team that was driving the implementation of the End of Life Care Strategy, was disbanded in March 2013 as part of the wider NHS reforms implemented by the coalition government led by D. Cameron.382 And in 2014, the need was felt to ‘refresh’ the End of Life Care Strategy to ensure it would be in line with the health care reforms and to extend the work being done.383 Initially, it seemed like the original strategy would be updated to reflect the changed circumstances. However, it turned out that NHS England chose to have new sets of ambitions and actions created to provide guidance for the recently established Clinical Commissioning Groups (CCGs) and other organisations involved.384 It is too early to fully evaluate the impact of the health care reforms and the new policy guidance on end of life care on the provision of care for the dying in England. However, early evidence suggested that the environment in which independent hospices operated was - once again - becoming of greater complexity. These care providers had to negotiate with an increasing number of parties. Research also showed that the percentage of NHS funding as part of the total expenditures in hospices was going down during the period immediately after the NHS reform.385 In the restructured NHS, the CCGs were responsible for commissioning palliative care. In 2016, nearly three quarters of these CCGs had strategies for end of life care in their area and 96 percent of them reported to have a nominated lead for end of life care for adults.386

381 Addicott & Ross, 2010; National Council for Palliative Care, 2014; National Palliative and End of Life Care Partnership, 2015. 382 Some of the work of the National End of Life Care Programme continued within NHS Improving Quality (The National Archives: The National End of Life Care Programme. http://webarchive.nationalarchives.gov.uk/20130718121128/http: //endoflifecare.nhs.uk. Accessed 7 December 2016). 383 Department of Health, 2010; NHS England, 2014a. 384 National Council for Palliative Care, 2014; National Palliative and End of Life Care Partnership, 2015. Although not officially acknowledged as a reason to move away from the End of Life Care Strategy, it is likely that it had been tainted by the issues surrounding the Liverpool Care Pathway at that time (see previous subsection). 385 Help the Hospices, 2014; Hospice UK & Together for Short Lives, 2015. 386 Hospice UK, 2016. For examples of these strategies see: Birmingham CrossCity CCG & Birmingham South Central CCG, 2014; East Kent Federation of CCGs, 2014; End of Life Care Strategy Group, 2012; Merton CCG, 2015; NHS Croydon Clinical Commissioning

Hence, it can tentatively be concluded that palliative care is structurally embedded in the commissioning of health care. Moreover, the content of these strategies suggests that a broad approach to end of life care is in place, which includes care in the community, hospitals, and independent hospices.

Solving the Funding Issue?

A final policy development worth mentioning in this section, is related to the funding of palliative care. In the past, plans existed to develop specialist palliative care Healthcare Resource Groups (HRGs).387 These would be reimbursed to the care provider using the Payment by Result (PbR) systematic. These specialist palliative care HRGs would cover cancer as well as non-cancer patients within the NHS as well as the voluntary sector. Concrete ideas on changes in the funding for palliative care in England became clear in 2011.388 In July of that year, the results of an independent review of the funding of palliative care were published.389 To improve patient choice commissioners should contract for a pathway or package of palliative care. This funding had to be independent of the place of delivery of palliative care. The Palliative Care Funding Review, however, did not suggest what these packages should contain. To develop these packages pilots were conducted on eight sites around the country between 2012 and 2014. Based on these results, NHS England developed plans to implement these care packages using a concept named ‘palliative care development currency’. The guidance provided is still rather tentative and application was not yet mandatory in 2016.390

Group, 2015; NHS Sheffield Clinical Commissioning Group, 2015; NHS Waltham Forest Clinical Commissioning Group, 2015; NHS West Hampshire Clinical Commissioning Group, 2015. 387 An HRG is a set of patient events within a specific field that have been calculated to require a certain level of resources (National Casemix Office: Home. http://content.digital.nhs.uk/casemix. Accessed 7 December 2016). 388 Department of Health, 2005; HC Deb, 15 December 2005, vol 440, col 2218W; HC Deb, 20 January 2006, vol 441, col 1659W; HC Deb, 14 July 2006, vol 448, col 2170W; HC Deb, 06 September 2011, vol 532, col 583W. 389 Hughes-Hallett, Craft & Davies, 2011. 390 NHS England, 2015.

A Future Model for Palliative Care Services in England?

The information provided earlier in this section related mostly to policies and their aims to improve palliative care in a range of existing settings. This may have given the impression that the types of specialist services available for palliative care in England have not evolved over the past two decades. As claimed in the introduction to this section, indeed, the models for providing specialist palliative care did not change significantly during this period. However, the concept of a ‘cottage hospice’ was developed recently. As it shows some resemblance to the bijna-thuis-huizen391 (see Section 5.4), which are seen as a typically Dutch invention, it is worth discussing the idea of a cottage hospice shortly in this final subsection. Despite their commonalities, however, the Dutch bijna-thuis-huizen were not mentioned as an example in the publications about cottage hospices. Instead, the report Dying for Change published in 2010 by the think tank Demos was a main source of inspiration. This report suggested that hybrid institutions to care for the dying that combined aspects of hospitals, hospices and care homes would be desirable in the future. The authors also hinted at the possibility of existing hospices establishing smaller, local satellites.392 Hospice in the Weald is working to open what it calls a ‘cottage hospice’ in Five Ashes, which is circa 10 miles from the current inpatient hospice in Tunbridge Wells, in 2018. The existing hospice delivers inpatient and day care and runs a hospice home care service catering for patients in West Kent and East Sussex. The cottage hospice will have 10 beds and is intended to serve as a community hub for patients and family caregivers, who can attend day support activities. The residential care will be reserved for people whose care needs are of low complexity and do, therefore, not require the specialist care available in the inpatient hospice. Nursing assistants and volunteers will provide the care at the cottage hospice; consultants or doctors will not be on site. Moreover, family members and other informal caregivers will be more involved in the care for the patient than in existing hospices. The concept of the cottage hospice was developed in response to a growing and unmet local need for end of life care for areas that were relatively far removed from the main hospice. The cottage hospice is expected to allow patients who can no longer stay at home, to die in - or at least closer to - the community in which they lived. As such it is explicitly framed as an addition to the existing range of services, which aims to be

391 Best translated as almost-at-home-houses and also known as low-care hospices. 392 Leadbeater & Garber, 2010, pp.63-64.

98 closer to the non-medicalised death at home than hospices generally provide nowadays.393 Moreover, it is expected that the cottage hospice will enable a more cost effective use of resources as the costs are estimated to be less than half of the costs of the care in the inpatient unit in the hospice in Tunbridge Wells.394

2.8 Palliative Care and Euthanasia

As the previous sections have demonstrated, the history of palliative care services and policies in England can be told without references to debates about euthanasia. In the chapters on the developments in the Netherlands this topic cannot be avoided. To allow for a comparative perspective, a brief discussion on the relationship between palliative care and euthanasia in England is necessary. The Voluntary Euthanasia Legalisation Society, which was established in London in

393 In the business case for the cottage hospice, it is claimed that:

Cottage Hospices do not replace or duplicate existing services or departments. They provide a different model which has a place on the spectrum between high- intensity care in hospital for people who need close medical attention and drugs and equipment and at the other end of the spectrum a non-medicalised death at home. Most hospices are relatively close to hospitals on the spectrum because they have evolved to provide specialist care (Clark, 2015). 394 It is expected that a substantial share of the costs of running the cottage hospice can be covered by making use of the Continuing Care Allowance. This is a NHS allowance for care given to people who are not in a hospital, but who have been classified as having a ‘primary health need’ (NHS Choices: What is NHS continuing healthcare? http://www.nhs.uk/chq/Pages /2392.aspx?Categor yID=68. Accessed 4 December 2016). Charitable giving will have to cover the remaining expenses. Clark, 2015; eHospice: A new model of care: The UK’s first cottage hospice? http://www.ehospice.com/uk/ArticleView/tabid/10697/ArticleId/17743/languag e/en-GB/Default.aspx. Accessed 4 December 2016; Hospice in the Weald: Cottage Hospices. http://www.hospiceintheweald.org.uk/patient-family-and- carer-information/our-services/cottage-hospices1. Accessed 4 December 2016; Hospice in the Weald: Cottage Hospice gets go ahead. http://www.hospiceintheweald.org.uk/news/article/cottage-hospice-gets-go- ahead. Accessed 4 December 2016; Hospice in the Weald: The launch of Cottage Hospices. http://www.hospiceintheweald.org.uk/news/article/the- launch-of-cottage-hospices-rob-woolley-ceo. Accessed 4 December 2016; KentLive: East Sussex church is chosen for cottage hospice site by Hospice in the Weald. http://www.kentlive.news/site-selected-pioneering-cottage-hospice- care/story-28807298-detail/story.html. Accessed 4 December 2016.

1935, was the first such organisation advocating the legalisation of euthanasia in the world. Shortly after the foundation of this society, its members managed to put a bill to legalise euthanasia on the political agenda. This bill did not pass and since that time several other attempts at creating a ‘euthanasia law’ have not succeeded.395 The British euthanasia movement was relatively weak during 1950s and early 1960s as a consequence of the association between euthanasia and eugenics that followed the atrocities that were committed by Nazi Germany during the Second World War.396 During this period Cicely Saunders developed her idea to establish a modern hospice. The weakness of the euthanasia movement, however, did not mean that she did not consider this topic. Already in her early writings, Saunders opposed euthanasia and argued that the best possible care should be given to dying patients to relieve their pain.397 When a bill on euthanasia was discussed in the House of Lords in 1969, the care available at St. Christopher’s Hospice was used as a ground to argue in favour of an alternative for legalising euthanasia. During the debate, Lord Thurlow, who was the chairman of St. Christopher’s Hospice, made an argument in favour of investing in palliative care rather than allowing euthanasia, because of the lack of places where people could die comfortably.398 This type of argument was - and is - made more often by advocates of hospice care. Most of them claimed that they were able to treat almost any pain, which made euthanasia superfluous. Other reasons for the pioneers of hospices to oppose euthanasia were religious arguments and the slippery slope of potentially adverse societal effects.399 Not only rejected the English hospice pioneers euthanasia explicitly, they were also fairly active in disseminating this message.400 A clear example is provided by the proceedings from the conference The Hour of Our Death, which was held in London in 1973. This conference was organised by S. Lack and R. Lamerton, who were medical doctors practising palliative care. The purpose of this conference, which was attended by approximately 300 members of the caring professions and was heavily oversubscribed, was described as follows:

395 Dowbiggin, 2001; Kemp, 2002. 396 Benzenhöfer, 2009; Frewer & Eickhoff, 2000; Hochgrebe, 2005, pp.85-95. 397 Saunders, 1959; Saunders, 1960. 398 Kemp, 2002; HL Deb, 25 March 1969, vol 300, cols 1199-1200; col 1252. 399 Anderson, 1975. 400 Crowther, 1993; Department of Health and Social Security, 1973, p.28; Lamerton, 1986; Saunders, 1959; Saunders, 1988a, p.305; Saunders, 1990; Saunders, 1992b; Saunders, 2002c; St. Christopher’s Hospice, 1977; Ten Haaft, 1996a; Twycross, 1996.

100

Its aim was to help to spread as widely as possible among the medical and allied professions the knowledge of what can now be done for patients at the hour of their death. It was hoped that this would further improve British terminal care, thus presenting a positive alternative to the much-canvassed idea of euthanasia.401

Interestingly, the chair of the Voluntary Euthanasia Society,402 S. Crown, was one of the participants during this conference. In a general debate he defended his position and predicted that a bill to legalise euthanasia would have passed Parliament by the mid-1980s. Cardinal Heenan gave the following response to this proposition:

What Dr. Crown had just said was the most important contribution to the conference. It is absolutely true that if we are inactive there will be an Euthanasia Bill successfully brought into the House. Whether it will be in the middle 1980s or the middle 1990s, I do not know, but if we are not active - and I do not mean Christians only - it will go through. Very rarely can you undo something which has been done in Parliament. Very rarely is a Bill repealed […] If euthanasia comes, there will be many people done to death […] If we are not careful, we will find this Bill going through because there are not enough people who realise its implications.403

Despite this call to action, the legalisation of euthanasia in the United Kingdom has never been considered to be imminent in the near future during the decades that followed the conference. Moreover, the preventive value of palliative care would be mentioned in debates like these, but when it came to the establishment of individual hospices the desire to improve care for the dying in a certain locality dominated. Therefore, it seems justified to conclude that in the English case, the euthanasia debate has been influenced more significantly by the existence of hospices than that the development of palliative care was affected by euthanasia. A final point to make is that the English viewpoint that euthanasia is incompatible with palliative care is shared by the wider palliative care community. The WHO definition of palliative care states, for example, that it ’intends neither to hasten or postpone death’.404 Additionally, the European Association of Palliative Care (EAPC) has held the position that euthanasia cannot be part of the practice of palliative care from its inception in 1988.405 Nowadays, the EAPC accepts that different legal regimes are in

401 Lack & Lamerton, 1975, p.35. 402 This was the new name of the Voluntary Euthanasia Legalisation Society. 403 Lack & Lamerton, 1975, p.46. 404 World Health Organization: WHO definition of palliative care. http://www.who.int/cancer/palliative/definition/en. Accessed 17 October 2016. 405 Materstvedt, Clarke, Ellershaw, Førde, Gravgaard, Müller-Busch, Porta i Sales &

101 place in its member countries and respects the choice of individuals. To offer an alternative to the legalisation of euthanasia, however, this organisation considers it important to raise awareness of the responsibility of societies to provide good care for those nearing the end of their lives.406

2.9 Conclusions

In this concluding section, the main elements that emerged from this chapter on the history of palliative care services and policies in England will be discussed. Internationally, St. Christopher’s Hospice and the other English hospices were an important source of inspiration for the improvement of care for the dying. In the following chapters we will see how and why other models for the provision of palliative care emerged in the Netherlands. Hence, service development is the first topic discussed in this section. The second topic is the NHS support given to these hospices once they had been established and the consequences of this closer relationship to the health care system. The final paragraph reflects on the wish to provide integrated palliative care. Euthanasia will not be addressed in these conclusions, because we saw in Section 2.8 that its impact on the development of palliative care services and policies in England was limited. The modern hospices that emerged in England from the late 1960s had a close link to cancer care. These organisations did not only provide inpatient care for people suffering from this disease, but the major hospices also conducted research and provided training. The control of cancer pain became a ‘unique selling point’ of the hospices and research showed the effectiveness of the treatment regimes applied. This did put the inpatient hospices on a relatively medically oriented trajectory and palliative medicine was recognised as a medical speciality in 1987. Moreover, the establishment of services complementary to the inpatient hospice, such as specialised home care services and day care services, resulted in a change of the patient population in the hospices. Only patients who required highly complex care were admitted for longer stays. Others could be admitted for a short period to determine a suitable medication regime for them. In this way, the hospices developed over time

Rapin, 2003; Roy & Rapin, 1994. 406 Radbruch, Leget, Bahr, Müller-Busch, Ellershaw, De Conno & Van den Berghe, 2016.

102 into a hub for various services for those nearing the end of their lives. When the hospices emerged, politics, the MoH/ DHSS and the NHS were fairly supportive. Funding arrangements were agreed locally, but it was unclear how hospices were to fit within the NHS structures. The DHSS stood aloof from making decisions on this question during 1970s. In 1980, the SMAC cautioned against the spread of hospices in the Wilkes Report. Although this advice was accepted by the government, public imagination had been captured by independent hospices, and such institutions were being established around the country without much assessment of local need or planning on a national scale. Thus, grass roots initiatives dominated the development, and the ideas presented in the Wilkes Report had limited impact when it came to containing the spread of inpatient hospices. The number of specialist palliative care teams in hospitals and home care, however, grew even more rapidly. By the mid 1980s, the services hospices provided had proven their value and it was clear that they substituted NHS care. However, while it had been comparatively easy to obtain funds for the non-recurring establishment costs, it became increasingly arduous for hospices to raise the private funds required to cover the running costs. This resulted in an intensifying call for public funding, which in 1987 was answered by the government with the publication of a circular, in which the DHAs were told to collaborate with the hospices and fund them. From 1989, the government decided to make additional, earmarked funds available and aimed to work towards a 50/50 partnership in which charitable giving would be matched pound for pound by NHS resources. It is noteworthy that party politics did not play a role in these political debates about this topic. MPs did not want to be seen as the ones who undermined initiatives by grass roots movements that enjoyed wide public support. Or, as S. Hughes, Liberal MP for the Southwark and Bermondsey constituency in South London, said during a House of Commons debate in 1987: ‘There is no great difference across the political spectrum about terminal care. We all want proper provision for the terminally ill’.407 Moreover, once it became clear that the work of St. Christopher’s Hospice and the other hospices that were emerging in England attracted attention from overseas visitors, the willingness of Ministers and Secretaries of State for Health to support the movement was also fostered by the pride they took in the prominent position of the British hospices in what was becoming a worldwide movement.408 This equal partnership for funding the expenses of independent hospices has in

407 HC Deb, 13 March 1987, vol 112, col 607. 408 Overy & Tansey, 2013.

103 practice never materialised, but the public funding has contributed to an increasingly close connection between the hospices and the NHS. This dynamic was intensified by the introduction of the purchaser provider split in the NHS during the early 1990s. In practice, hospices were faced with the choice to become completely self reliant or to become part of the contracting culture of the NHS. These organisations unanimously - though some with some trepidation - opted to be associated with the NHS. Umbrella organisations such as the NCHSPCS facilitated this move with advice for both the hospices and the NHS purchasing bodies. The funding arrangements developed, focused on inpatient hospices, whereas these organisations had already started branching out and considered an inpatient stay a last resort in case a patient could no longer be managed at home. Moreover, the cancer policies of the late 1990s and 2000s, despite the other positive impacts on palliative care development reported, reconnected palliative care to cancer. As such these funding arrangements and cancer policies did not necessarily encourage the spread of the ideas developed in hospices to other settings and to other patient groups. These ideas on extending palliative care practices beyond the hospice had become common during the early 1990s among palliative care practitioners. Slowly the concept of integrated palliative care started to influence health care policy as well. The 2008 End of Life Care Strategy showed that these ideas had now also been completely accepted by policymakers as the way forward and action was taken to support implementation. As the example of the cottage hospice illustrated, hospices are starting to develop new models of care to contribute to these developments. Time will tell whether this move towards integrated palliative care in England is going to be considered successful. However, internationally indications exist that England is going to have to share its role of exemplar. Although some internationally renowned initiatives for integrated palliative care are based in England, and the provision of palliative care in this country is still ranked as the best in the world, reports on best practices in integrated palliative care are increasingly looking at initiatives in other countries as well.409

409 Canadian Hospice Palliative Care Association, 2013; Hasselaar & Payne, 2016; Leadbeater & Garber, 2010.

104

Chapter 3

Health Care in the Netherlands

3.1 Introduction

This short chapter has two aims. Firstly, background information will be provided for readers not familiar with the Dutch health care system. After concise descriptions of the main health care institutions and developments after the Second World War, an overview of the main similarities and differences of the English and Dutch health care will be provided.410 Given the scope of this thesis, it is inevitable that this chapter will not give a comprehensive account of the organisation and development of the Dutch health care system, but it intends to provide sufficient information to contextualise the more specific developments related to palliative care analysed in Chapters 4 to 6.

3.2 Main Institutions and Developments in Dutch Health Care411

Non-Governmental, Non-Profit Health Care Providers

From the mid nineteenth century, the Dutch government started to regulate medical

410 See Section 2.1 for a summary of the main characteristics of the English health care service. 411 Recent studies that provide a broad overview of the development of the Dutch health care system from a historical perspective do not exist. The most comprehensive account on the Dutch health care system, which also includes substantial historical sections is: Boot, 2013. In the English language equally thorough accounts are still lacking, but useful information is provided by for example: Den Exter, Hermans, Dosljak & Busse, 2004; Helderman, Schut, Van der Grinten & Van de Ven, 2005; Kroneman, Boerma, Van den Berg, Groenewegen, De Jong & Van Ginneken, 2016; Maarse & Lodewick, 2011; Pollitt, Harrison, Dowsell, Jerak-Zuiderent & Bal, 2010; Schäfer, Kroneman, Boerma, Van den Berg, Westert, Devillé & Van Ginneken, 2010; Schut, 1995a; Schut, 1995b; Van den Berg, Kringos, Marks & Klazinga, 2014; Van Ginneken, Schäfer & Kroneman, 2010; Van Rooij, Droyan Kodner, Rijsemus & Schrijvers, 2001.

105 education and practice. Tasks related to public health were delegated to the local authorities by the Gemeentewet412 of 1851.413 This was one of the reasons why local authorities were running hospitals, which mostly catered for relatively poor patients.414 However, this local government support was subsidiary to the support and care provided by churches and other voluntary agencies.415 Around 1900, the pillarisation of Dutch society intensified. Not only protestant Christians, but also Roman Catholics and Socialists increasingly formed subgroups within society and established their own institutions.416 Among these institutions were non-profit organisations such as hospitals and home care associations.417 The first home care association was established in Hilversum in 1875. Shortly after the foundation of this organisation similar initiatives developed at other places as well, and soon nation wide coverage was achieved by these organisations.418 With regard to hospitals it is worth mentioning that not only local authority and private, non-profit hospitals existed. Some provinces419 were also running hospitals and the state was responsible for university hospitals. However, very generally it can be said that over 70 percent of hospital beds were based in institutions run by non-governmental organisations.420 The establishment of organisations that provided health care by each of the pillars resulted in a diverse health care sector with many, relatively small organisations. The combination of an expanding welfare state which made public resources more readily

412 Local Government Act. 413 Van de Kimmenade-Beekmans, 1991, p.19; Van Dijk, 1993, pp.3-4. 414 Wolffram, 2003. 415 Spits, 1995, p.10; Van de Kimmenade-Beekmans, 1991, pp.9-10. 416 Pennings, 1991. The value of the concept of (de)pillarisation as an analytical category has ibeen criticised by historians. Studies have shown, for example, significant local differences in degree of pillarisation and temporal patterns of developments. Moreover, overlap and cooperation between the pillars has shown to be more substantial than suggested by the image of three, independent pillars (Blom, 2000; De Rooy, 1997; Jürgens, 2014; Van Dam, 2014; Wielenga, 2009). However, in the current study pillarisation and its impact on health care services will not be a major explanatory factor for the differences between England and the Netherlands with regard to palliative care. Therefore, I consider it acceptable to deploy this concept as a metaphor for a characteristic of Dutch society. 417 In Dutch: Kruisverenigingen. 418 Meyboom, 1970; Van de Kimmenade-Beekmans, 1991; Van der Meij-de Leur, 1989. 419 Provinces are a regional administrative layer between the national government and the local authorities. During the period covered in this thesis, the Netherlands initially had 11 provinces, but on 1 January 1986 Flevoland was introduced as the twelfth province. 420 Van Dam, 1987, pp.107-109.

106 available, secularisation, and depillarisation during the 1960s and 1970s, resulted in a professionalisation of the confessional health care organisations. An example of this development was that women who had not taken monastic vows, but had taken some form of nursing education, increasingly took over from nuns and deaconesses as nurses.421 This development was often followed by mergers of health care providers that operated in the same geographical area. As a consequence, the denominational background of the organisation is generally no longer a central feature of hospitals or home care organisations nowadays. This is different for organisations running nursing homes and care homes, where the religious background of the organisation may still be considered relevant. Despite these differences with the situation a century ago, the vast majority of Dutch health care providers are still non-governmental, non-profit organisations nowadays.422 An important influence on the continued central position of voluntary agencies in the Dutch health care sector as well as the welfare state more generally has been the dominance of Christian parties in Parliament throughout most of the twentieth century. Confessional ideologies stressed that governmental action should be entrusted to non-governmental institutions and that the state ought to limit its role in service provision whenever possible.423 Public funding was, however, considered acceptable and was used as an instrument to ensure access to services for the entire population when the welfare state developed.424

421 Kennedy, 1995, pp.97-98; Van Dam, 2014, p.47. 422 Boot, 2013; Kappelhof, 1990, pp.45-46; Schut, 1995a, p.43. A slight nuance to this statement is that for-profit clinics have been established in the Netherlands since 1988 and their number is growing. Some of the care they provide is paid for by the health insurers. However, their market share in specialist somatic care was, with 2.3 percent, still modest in 2010 (Bruinsma, 2011; Centraal Bureau voor de Statistiek, 2014). Additionally, over 170 private, small scale centres for assisted living existed in the Netherlands in 2016. These can be run on a for profit basis. The costs of some of the care provided might be covered by the residents using a personal care budget (Zorgkaart Nederland: 171 particuliere woonzorgcentra in Nederland. https://www.zorgkaartnederland.nl/particulier-woonzorgcentrum. Accessed 20 November 2016). 423 Toonen, 1987, p.115. These points of view followed from the doctrines of ‘soevereiniteit in eigen kring’ and ‘subsidiariteit’. The first concept was used by Protestant Christians to refer to the idea that social organisations had to be independent of the state and that tasks that could be performed by these organisations should not be conducted by the state. The second concept was used by Catholics to express the idea that tasks should be delegated to the lowest possible level. Hence, the national government ought to be subsidiary to lower level administrative bodies (Hellema, 2012, pp.274-275; Kennedy, 2009, pp.104-107). 424 Kennedy, 1995, p.39.

107

Funding Acute Care: Sickness Funds

In the early twentieth century, the national government decided to take on a more active role with regard to social policy.425 During this period, the government attempted several times to establish a social insurance system that provided a certain degree of cover for the costs of medical care. Such a system had to replace the often small and local contributory schemes for the costs of generalist medical treatment and medication,426 known as sickness funds427 that had emerged from the late nineteenth century. One of the main aims of these initiatives was to extend coverage in terms of treatments provided as well as the percentage of the population covered, because sickness funds had often excluded, for instance, the chronically ill and the elderly. Moreover, funds used various income criteria to determine whether people qualified for insurance.428 Whereas bills to compensate breadwinners for the loss of their income after an accident or during illness were passed by Parliament in 1901 and 1913, the efforts to establish social insurance for health care expenses were not successful.429 This changed during the Second World War when the German forces introduced an obligatory health insurance for people with an income below a certain threshold. Although this insurance system was modelled on the German health insurance system, the differences with the proposals that had circulated in the Netherlands before the war were relatively limited.430 After the War, new regulation was deemed desirable to replace the act introduced by the occupying forces. During the immediate post-war years, however, other topics, such as reconstruction and poverty reduction featured more prominently on the political agenda.431 Hence, although only minor changes were made to the system introduced during the War, it took until 1964 before the new Ziekenfondswet432 (ZFW) came into force. More than 200 sickness funds were authorised during the War to administrate these insurances within the region in which they were based.433 People who had to take out

425 Kappelhof, 1990, p.43. 426 The costs of hospitalisation and specialised medical care were in general not covered by these schemes. 427 In Dutch: ziekenfondsen. 428 Companje, 2008a, p.477; Van der Hoeven, 1983, pp.18-20. 429 Companje & Rigter, 2008, p.399; Hoogenboom, 2004. 430 Blaauwbroek, 1997a, pp.19-21; Companje, 2008c, pp.892-894. 431 Kerkhoff & Dols, 2008, pp.719-720; Van der Hoeven, 1983, p.294. 432 Sickness Fund Act. 433 By the time the sickness funds were abolished in 2006, the number of these

108 sickness fund insurance, equating to roughly two-thirds of the population,434 paid an income based contribution. Benefits included most non-catastrophic health risks. Care was provided in kind to the persons insured. The sickness funds would sign contracts with service providers to ensure that the persons insured with them would receive care.435 The terms of these contracts, and especially the prices negotiated, were determined nationally and had to be approved by the Ziekenfondsraad436 (ZFR) (I will discuss this organisation in the next paragraph).437 Until 1992, the sickness funds had to conclude contracts with all providers within their region. They could contract selectively from that time, but the sickness funds made limited use of this right.438 In the decades after the liberation, government and civil society cooperated in the field of health care. Some new, corporatist organisations to support this cooperation were established and codified in law. Of these organisations the one most relevant to this thesis was the Ziekenfondsraad439 (ZFR). This body was established by the government to shift the balance of power away from the government, where it had rested under the German rules, by giving civil society control over the sickness funds.440 The ZFR had advisory as well as managerial tasks. The latter tasks included monitoring the operations of the sickness funds and allocating financial resources. The ZFR also subsidised research on health care.441 The membership of the ZFR had a size of 36 to 40 persons. Its composition changed over the course of the existence of the council, but - in line with the corporatist nature of Dutch society - always included

organisations had dwindled to 22 (Nederlandse Zorgautoriteit, 2006). 434 This number proved to remain fairly stable over time as the income threshold was indexed. 435 Companje, 2008c; De Bruin & De Bruin, 2000, p.135; Van Bottenburg, De Vries & Mooij, 1999, pp.51-65; Van der Hoeven & Van der Hoeven, 1993. 436 Sickness Fund Council. 437 De Wolff, 1984d; De Wolff, 1984e; De Wolff, 1984b; De Wolff, 1984c. From 1962, these negotiations took place in a body with a corporatist membership named Centraal Orgaan Ziekenhuistarieven (National Hospital Tariffs Authority) (COZ). In 1982, the COZ was replaced by the Centraal Orgaan Tarieven Gezondheidszorg (National Health Tariffs Authority) (COTG), which had to check the tariffs that care providers and sickness funds negotiated against a set of criteria that had to be approved by the Minister. For further information on these bodies, see: Van der Poel, 1987. Successor organisations, though with a changed range of duties and membership, of the COTG were the College Tarieven Gezondheidszorg (National Board for Health Tariffs) from 1997, which in turn was replaced by the Nederlandse Zorgautoriteit (Dutch Healthcare Authority) in 2006. 438 Companje, 2008c. 439 Sickness Fund Council. 440 Van Bottenburg, De Vries & Mooij, 1999; Vonk, 2012. 441 Janssen, 1987b, pp.131-134.

109 representatives of the sickness funds, care providers, employers, and employees.442 During the 1990s, the government decided to reduce the number of advisory bodies and shift from a corporatist model in which the members of these bodies represented specific interest groups to advisory councils consisting solely of independent experts. As a consequence, the ZFR lost its advisory function in 1997.443 The monitoring and executive role were still conducted by the ZFR until it was succeeded by the College voor Zorgverzekeringen444 on 1 July 1999.445

Funding Acute Care: Private Insurances

Those who were not eligible for sickness fund insurance were free to insure themselves against medical costs through private insurance companies. Nevertheless, nearly all Dutch had health insurance. In 1992, for example, a mere 0.7 percent of the total population was uninsured. These insurances generally offered a reimbursement of the medical costs incurred. A combination of initiatives taken by the health insurers to prevent the government from raising the threshold for sickness fund insurances to include higher middle incomes, along with governmental regulation related to groups such as the elderly ensured that a certain degree of solidarity was maintained and access to health care guaranteed. In practice, this meant, for example, that private insurers had to offer people who were economically unattractive because of their health status a so-called standard package. As the premiums paid for these standard packages did not cover the full expenses incurred by these clients, other privately insured clients had to pay a solidarity contribution on top of their own insurance premium.446

442 Van Bottenburg, De Vries & Mooij, 1999, pp.115-118; Van der Hoeven, 1983, pp.236-237. 443 Health care related advice was to be provided by the Raad voor de Volksgezondheid en Zorg (Council for Public Health and Care). 444 Health Insurance Council. 445 Blaauwbroek, 1997a, p.11; Companje, 2008b, p.607; Dols & Kerkhoff, 2008, pp.818-827; Van Bottenburg, De Vries & Mooij, 1999. On 1 April 2014 the name of this organisation was changed into Zorginstituut Nederland (National Health Care Institute) to reflect its expanded responsibilities. 446 Companje, 2008c; Companje, 2008a, pp.519-520; Schut, 1995a, pp.43-48; Trappenburg, 2006, p.54.

110

Funding Long Term Care: The AWBZ

Another important law that came into force during the expansion of the Dutch welfare state was the Algemene Wet Bijzondere Ziektekosten447 (AWBZ). From 1968 to 2015, this law ensured that all individuals were covered for unpredictable, often long term, health care expenses, such as a stay in a nursing home or institution for the disabled. The resources to cover these costs were raised through general taxation. Administration of the AWBZ was delegated to sickness funds that acted as liaison offices. The country was divided into 35 regions, in each of which the largest sickness fund was appointed as liaison office.448 Despite its name, the ZFR also became an important body with regard to advice and management of the ABWZ.449 Initially, all care was provided in kind, but from 1998 patients could opt for a personal health budget.450 Over the years of the existence of the AWBZ, the definition of exceptional medical expenses was widened and services such as home care, which may better be classified as social support, came to be included in the package. This situation was considered undesirable and to redress the balance and increase possibilities for cost control the Wet maatschappelijke ondersteuning451 (Wmo) was passed in 2006.452 This law made the local authorities responsible for providing assistance. Tax revenues were allocated to the local authorities to cover the costs associated with this measure. Initially, the AWBZ and the Wmo existed alongside each other. As per 1 January 2015, however, the AWBZ was repealed. Its tasks were distributed among several laws, including the - by then - already existing Zvw (see below), the Wmo and newly implemented laws on long term care and youth care.453 As we will see in the chapters on palliative care in the Netherlands, the combination of ZFW and private health insurances on the one hand, and the AWBZ on the other hand created an important and enduring divide between acute and long-term care within the

447 Exceptional Medical Expenses Act. 448 In 1999, the system of liaison offices was replaced by 31 regional care offices (in Dutch: Zorgkantoren) (Companje, 2014). 449 Kerkhoff & Dols, 2008, p.742. 450 In Dutch: Persoonsgebonden budget (Pgb). 451 Social Support Act. 452 In contrast to the situation under the AWBZ, people were technically not insured by the Wmo and as a consequence provisions were not defined as rights, which made cost control a more viable option. 453 In Dutch: Wet Langdurige zorg (Wlz) and Jeugdwet. Companje, 2014, p.170; Kroneman, Boerma, Van den Berg, Groenewegen, De Jong & Van Ginneken, 2016; Maarse & Jeurissen, 2016.

111

Dutch health care landscape.454

Health Care Policies: From Governmental Control to the Introduction of a Market

In combination with factors such as increased possibilities to treat patients, increasing prosperity, and less stringent governmental regulation of construction capacity and prices than during the immediate post-war years, the introduction of the ZFW resulted in a rapidly expanding hospital sector.455 In response to these developments, the government published a major memorandum on the state of affairs in health care and the desired future developments in 1966. This Volksgezondheidsnota 1966456 can be regarded as the starting point of a period during which the government aspired to create a more efficient health care sector by developing a clearer structured health care infrastructure. As a result, the influence of the government on the health care sector increased during the 1970s and early 1980s.457 The uncontrolled and significant rise of the costs of health care during this period - the expenses per person insured by the sickness funds, for instance, increased by around 20 percent annually between 1967 and 1977458 - combined with the economic downturn provided important reasons for the government to take measures. The proliferation of hospitals, for instance, was halted in 1971, when a law made building or extending such institutions without previous permission from the Minister illegal.459 Rules to regulate, for instance, health care provision, implement macro and hospital budgets to replace the existing output funding based on tariffs and production, and to gain control over prices charged to the sickness funds were implemented from the late 1970s. These plans had been set out in the Structuurnota460 that was published in 1974 and that had an even stronger focus on improving the structure of the health care sector than the Volksgezondheidsnota

454 Companje, 2014, p.14; Kerkhoff & Dols, 2008, p.713. 455 De Wolff, 1984a; Van Dijk, 1993, pp.4-5. 456 Health memorandum 1966. 457 An indication of the growing political importance of health care was the establishment of separate ministries for social affairs and health when the cabinet led by B.W. Biesheuvel was formed in 1971. Health care was from now on the main task of the Ministerie voor Volksgezondheid en Milieuhygiëne (Ministry for Health and Environment) (VoMil) (Van der Hoeven, 1983, p.369). 458 Van Bottenburg, De Vries & Mooij, 1999, pp.123-128; Van der Hoeven, 1983, p.365. 459 Van der Hoeven, 1983, pp.364-365. 460 Memorandum on structure.

112

1966.461 From 1986, the year in which the government installed an ad hoc committee chaired by Philips CEO W. Dekker to consider the future of the health care system, the focus shifted towards the implementation of managed competition in health care to replace the existing corporatist structures and develop new levers to control costs as the cost containment measures so far were not regarded as successful.462 Compared to the implementation of the internal market in England, the introduction of these plans was rather slow in the Netherlands. Nevertheless, progress was made and in 2006 the introduction of a health care market was complete, with the implementation of a new insurance system covering the whole population. The implementation of this Zorgverzekeringswet463 (Zvw) meant that the division between sickness fund and private health insurance was abolished and replaced by an obligatory basic health insurance.464 This law stipulated that every inhabitant had to obtain insurance for a set of basic medical treatments, but was free to choose an insurer. The government was responsible for determining the content of this so-called ‘basic package’ and limited its maximum price. The insurers were legally obliged to accept all applicants for this basic package, but were allowed to be selective in their acceptance of people for supplementary insurance packages, covering, for instance, dental care, glasses, and physiotherapy. The insurers were free to decide whether they wanted to purchase care from a certain provider.465

461 Companje, 2008b, pp.577-578; Companje, 2008d, p.684; Hannessen & Sliedrecht, 1984, p.302; Kappelhof, 1990, p.25; Van der Hoeven, 1983, p.351; Van Dijk, 1993, pp.6-7. 462 Companje, 2008c, pp.896-898; Kerkhoff & Dols, 2008, p.772. 463 Health Insurance Act. 464 During the early 2000s, the AWBZ covered 41 percent of the health expenditure, while the supplementary health insurances paid for 3 percent of the health expenditure. The other 53 percent was paid for by the sickness funds, that covered around 53 percent of the population and the private health insurers, which catered for 30 percent of the population (Den Exter, Hermans, Dosljak & Busse, 2004). 465 Kroneman, Boerma, Van den Berg, Groenewegen, De Jong & Van Ginneken, 2016.

113

3.3 Comparing the Dutch and the English Health Care Systems466

Various typologies of health care systems have been developed.467 Many of them have emphasised the arrangements - such as insurance, tax and private systems - to fund health care.468 In these typologies England and the Netherlands are often classified in different categories. As mentioned in Section 1.4, the reasoning in this thesis is that the health care systems in these countries are similar enough not to compare the proverbial apples and pears, but that the developments regarding palliative care were dissimilar and can - at least to a certain extent - be explained by the institutional characteristics of the health care systems. Therefore, the main differences between the English and the Dutch health care systems will be highlighted in this concluding section. However, it is necessary to keep in mind that such judgements on the similarity of health care systems always involves a certain degree of judgement and is related to the elements of the health care system a researcher pays attention to.469 This can be illustrated by two studies that both compare England and the Netherlands but each of them looking at a different aspect of the system. Pollitt et al., for example, pointed out that the developments with regard to performance indicator systems in the two countries differed for the two decades following 1982, despite the two health care systems having ‘much in common’ and their health care policy communities usually being well informed about the developments at the other side of the North Sea.470 In contrast, Wallenburg et al. argued that the Netherlands and the United Kingdom can be regarded as a ‘classic most different case design’, when looking at medical education. They claimed that the two countries differed ‘on many institutional

466 The focus on health care systems in this section does not imply that the wider political context in which these systems operated was irrelevant. Significant differences, for instance related to the composition of the government, existed between the two countries. However, since the differences in political system and the ways governments carried out their tasks were not crucial elements to explain the differences in the development of palliative care in the two countries, an overview of the similarities and differences in these fields is not included in this thesis. For further information on these topics see: Andeweg & Irwin, 2009; Leyland, 2007; Rogers & Walters, 2006; Van der Meer, Raadschelders & Kerkhoff, 2011; Wagenaar, Kerkhoff & Rutgers, 2011; Wright, 2000. 467 Beckfield, Olafsdottir & Sosnaud, 2013; Burau & Blank, 2006; Freeman & Rothgang, 2010; Moran, 2000. 468 Gorsky, 2011, p.430. 469 Tuohy, 2012. 470 Pollitt, Harrison, Dowsell, Jerak-Zuiderent & Bal, 2010.

114 characteristics except for one crucial independent variable - namely, the self- regulatory authority of the medical profession with regard to its vocational training programs’.471 The logic underlying the current study is more akin to the one applied by Pollitt et al. than by Wallenburg et al. and the continuing distinctiveness of each nation as well as the converging tendencies with regard to palliative care will have to be taken into account.

In the remainder of this subsection, the main differences between the English and the Dutch health care system will be explicated. This will be done using the three key dimensions of the health care system - financing, service provision and regulation - that were used to build a typology by Wendt et al.472 The classic distinction between the health care systems in England and the Netherlands is often said to be found in the first key dimension, the funding mechanisms. As such, the two countries are represented as totally different types. Whereas the English NHS has been the model for what came to be known as tax-funded ‘Beveridge-type’ health care systems,473 the Dutch health care system can be described as a partly privatised version of the social insurance based ‘Bismarck-type’.474 Although the public-private mix of funding has changed over time in favour of an increase of direct payments by patients, the situation with regard to the sources of funding has been relatively stable. The allocation of these resources has, however, been subjected to more change in both countries. Whereas care providers were in the past reimbursed based on, for instance, their bed capacity, both countries have moved towards allocation systems that are - at least partly - related to the number of treatments provided. Moreover, in both countries these changes were introduced alongside measures that aimed to foster forms of competition. However, these market based reforms were introduced earlier in the NHS, where they started in the late 1980s, than in the Netherlands, where the Zvw that came into force in 2006

471 Wallenburg, Helderman, De Bont, Scheele & Meurs, 2012, p.462. 472 Wendt, Frisina & Rothgang, 2009. 473 This type is named after the founder of the British NHS. Characteristic for this type is that health care expenditure is funded publicly, the state owns the health care services and decides on health care policy and management. Generally, services are free of charge for the user and the budget mechanism is used as a means to control funding (Rutten & Van Doorslaer, 2001, p.299). 474 This type is named after Otto von Bismarck, who introduced a system of social insurance in Germany in the nineteenth century. Thus, financial resources for health care are collected by social insurances. Non-governmental organisations decide on the service provision and financial reimbursement in the health care system (Rutten & Van Doorslaer, 2001).

115 introduced the most substantial changes and can be considered the pivot point. The second key characteristic is service provision, where the options range from state- run facilities to private for-profit facilities. At the time of the establishment of the NHS, the state nationalised the existing health care facilities. Hence, NHS care was provided in state-run facilities. The implementation of the ‘any willing provider’ and more recently ‘any qualified provider’ regulation, however, had as a consequence that care paid for by the NHS is no longer solely provided in NHS premises nor on a non-profit basis. Moreover, the health reforms over the past two decades have increased the autonomy of the hospitals.475 In the Netherlands, the situation differs significantly and has been more stable in the sense that care was and still is provided by non- governmental actors, which enjoy a high degree of autonomy.476 It is noteworthy that the combination between the first two characteristics result in a situation in which health care financing and delivery have - with some small exceptions of health insurers running their own pharmacies and optician stores - always been split in the Netherlands during the post-war period.477 This is in contrast to the situation in England, where the so-called purchaser provider split was implemented in 1991.478 The final key characteristic to discuss is regulation. In both countries the government plays a central role in regulating health care. If we look at the developments over time, England and the Netherlands initially both showed a trend towards increased control by the central state - reaching its peak in the 1970s, which was reduced again with the implementation of the market based reforms. However, for the whole period after the Second World War, it can be said that the influence of the British government on the NHS is more direct and more far-reaching than the control of the Dutch government over the health care sector. This state of affairs is also reflected in the position of the ministers responsible for health within the government. Whereas the English DH and its predecessors had a managerial responsibility for the NHS - and the accompanying budget - until it was moved to NHS England in 2013, its Dutch equivalent VWS and its predecessors never had this duty. As a consequence, VWS was relatively small in

475 Edwards, 2011. 476 In a study of eight countries - Norway, Portugal, Israel, Estonia, Czech Republic, England, Spain and the Netherlands - the Dutch hospitals were the most autonomous of public hospitals (Maarse & Lodewick, 2011; Saltman & Durán, 2011, p.77). 477 During the pre-war period some sickness funds employed medical doctors to provide care for the people insured. 478 Klein, 2013.

116 terms of budget and number of employees compared to other Dutch ministries.479 Another regulation related issue is the distinction between the different branches of the health care system. In an article on the development of integrated care in England and the Netherlands, the authors point at the comparable consequences of the financial split between acute (sickness fund and health insurance) and long-term (AWBZ) care in the Netherlands and the divisions between health and social care as well as between the public, private and voluntary sectors in England.480 These cleavages were said to hinder the development and delivery of integrated care in both countries. The division between acute health and AWBZ care has had an influence on the development of palliative care in the Netherlands and contributed to the lack of clarity surrounding the funding for palliative care services.481 In England, however, the health - social care division seems not to have had similar consequences for the provision of palliative care and - as we have seen in Chapter 2 - discussions about the position of hospices centred on the differences between the voluntary sector and the NHS.482 A final regulation related point is the speed with which new legislation is developed and implemented. Whereas, many observers perceive the NHS as having been in continuous flux since the reforms of the early 1990s, the Dutch health care system is of a far more stable nature. Changes are often much more gradual than the NHS reforms. A major explanatory factor for this difference is the structure of the political system. In England, single party governments often enjoy relatively long periods in office and do not experience major barriers to implementing radical reform, whereas the system of proportional representation in the Netherlands results in a more consensual policy style with coalition governments of which the composition changes after most elections.483 Therefore, changes in the Dutch health care sector were generally incremental and the result of political and social compromise.484

479 Jarman & Greer, 2010; Terlouw, 1983. 480 Mur-Veeman, Hardy, Steenbergen & Wistow, 2003. 481 Van Reuler, 2007. 482 From an international perspective, it is remarkable that England and the Netherlands were the only Western European countries providing protection against high medical risks during the 1960s. In England, these risks were covered under the NHS, whereas the Netherlands introduced the AWBZ (Companje, 2014, p.121). 483 Hacker, 2004; Lijphart, 1999. 484 This observation is not unique for the health care sector. Wielinga shows that it is in line with the wider political and social history of the Netherlands during the post-war period. A major explanation for this characteristic is that the Netherlands is a country of minorities - religious or otherwise. They do, however, have to be pragmatic and cooperate to ensure the country as a whole

117

In sum, the changes that took place in the English and the Dutch health care systems since the Second World War resulted in a certain convergence of health care governance in these countries. Nonetheless, crucial differences regarding, for example, the source of financial resources and the ownership of the health care infrastructure continue to exist.

functions (Wielenga, 2009, p.8).

118

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

Politics and Society during the Post-war Reconstruction and Long 1960s

The Second World War had not resulted in major changes in the political order in the Netherlands. However, during the post-war reconstruction the Netherlands modernised at a high pace. Urbanisation, industrialisation and secularisation all took place against a backdrop of increasing prosperity. Cabinets included the PvdA as well as the Katholieke Volkspartij485 (KVP) and were often completed by the liberal or a Protestant party. This period came to an end with the elections of 1958, after which the PvdA was no longer part of the government.486 During the 1960s, the social changes that had started in the 1950s, such as secularisation and depillarisation, continued and accelerated. Politically, this resulted, for instance, in the establishment of new parties such as D66. With regard to policy, the reconstruction was considered completed, but extension of the welfare state was on the agenda. It has been argued that the government led by PvdA leader J.M. den Uyl (1973-1977) formed the end of this period of relative continuity, which is sometimes referred to as the long 1960s.487 The establishment of a welfare state was enabled by growing prosperity, which was partly due to the discovery of the largest natural gas field in Europe in the northern province of Groningen in 1959. Additionally, a fairly high degree of social and political consensus about the direction of development existed and the minister in charge, G.M.J. Veldkamp, was praised for his knowledge of the field and political professionalism.488 Social security, health care and education are all examples of fields

485 Catholic People’s Party. 486 Wielenga, 2009, pp.191-234. 487 Wielenga, 2009, pp.235-282. 488 Companje, 2014; Hellema, 2012, p.25; Kerkhoff & Dols, 2008, p.742; Van der Hoeven, 1983; Wielenga, 2009, pp.235-282.

119 in which the government decided to intervene more actively than before. As we have seen in Chapter 3, the main laws related to the health care sector were the ZFW and the AWBZ. These laws significantly increased the financial accessibility of health care.489

Overview of the Chapter

In this chapter, we focus on the developments related to palliative care in the Netherlands during the 1960s and 1970s. In Section 4.2 attention will be paid to the role of nursing homes. As mentioned in Chapter 1, some authors consider these nursing homes the Dutch equivalent of the English hospices. I will argue that there are more dissimilarities between these institutions than similarities, but that the existence of these nursing homes is a major reason why institutions that resembled the English hospices did only emerge during the 1990s. This absence of hospices during the 1970s and 1980s is in clear contrast to the situation in several other affluent countries, such as Canada and the United States, where the idea of hospice care was taken up fairly quickly after its emergence in England. Thus, from an international perspective, this appears to indicate a late development of palliative care in the Netherlands.490 This state of affairs in the Netherlands raises several questions. Firstly, were medical practitioners in the Netherlands aware of the developments in the English hospices? This question has to be answered affirmatively. Among the visitors received by St. Christopher’s Hospice, and to a lesser extent the other British hospices, were a number of Dutch and contacts were established during conferences. Some of them published articles on their experiences in Dutch medical journals.491 These people often became

489 Companje, 2014. 490 This international comparison is meant to judge the Dutch situation against the situation in countries which are fairly comparable if it comes to the level of the provision of curative health care, care for the chronically ill and availability of resources for health care (Gronemeyer, Fink, Globisch & Schumann, 2004; Ten Have & Janssens, 2001; Weisz, 2014). 491 The first article about a visit to St. Christopher’s Hospice in a Dutch medical journal was published in 1968. This visit was inspired by a talk of Cicely Saunders at a geriatrics conference in 1966 (Schouten, 1968). The Nederlands Tijdschrift voor Geneeskunde, in which this article appeared, was a widely read Dutch medical journal covering a broad range of topics. Also P. Admiraal and two of his colleagues of the hospital in Delft visited St. Christopher’s Hospice in 1968 (Admiraal, 1998, p.44). For references to other visits of Dutch people to St. Christopher’s Hospice

120 involved in initiatives to improve care for the dying, but during the time period covered in this chapter they advocated different models of care than customary in England. Two of these projects and the responses they received from the ZFR and the government are discussed in Section 4.3. Other organisations that aimed to improve care for the dying did also take inspiration from the English hospices, but as they emerged later in time they will be analysed in Chapter 5. In Section 4.4, the emergence of euthanasia in the Netherlands will be described. I will show that this was not the reason why hospices did not develop in the Netherlands during the 1960s and 1970s.

4.2 Nursing Homes instead of Hospices? 492

Intramural Care for the Elderly after the War

Immediately after the Second World War, the improvement of the situation of the elderly was considered one of the most pressing social issues.493 This was related to the growing number of elderly persons and the poverty experienced by this group. This sense of urgency resulted in the provision of a state pension for elderly people whose income was insufficient from 1947. In 1957, the law was changed to include all citizens over the age of 65. In addition to these state pensions, two types of institutions for the elderly - care homes and nursing homes - became popular during the decades

during the 1960s and 1970s, see: Hageman, 2007; Herbergs, 1985; "Sterven”, 1971; Van Overeem, 1976; ; Weyers, 2004, p.56. Moreover, T. West and B. McNulty, who both worked at St. Christopher’s Hospice, addressed meetings in the Netherlands in 1974 and 1976 (Boer, 1976; "Vertel zieke waarheid”, 1974). 492 The translation of the Dutch term ‘verpleeghuis’ into English, is problematic. Whereas the literal translation is ‘nursing home’, the characteristics of Dutch ‘nursing homes’ are different from what is commonplace from an international perspective. Dutch nursing homes, for example, have their own physicians. Therefore, it has been argued terms like ‘geriatric hospital’ or ‘hospital geriatric service’ (with rehabilitation wards and long-stay wards) or the untranslated ‘verpleeghuis’ would be more suitable considering the functions carried out (De Haan & Ribbe, 1993; De Pijper, Ribbe & Stoop, 1993; Ribbe & Van Mens, 1986). For reasons of readability, I will, however, use the term nursing home throughout this thesis. 493 Van der Hoeven, 1983, p.241.

121 following the war. Care homes494 were special homes for the elderly, and the government stimulated their establishment as they would contribute to solving the existing housing shortage. The government subsidised the building of these places, but left the actual establishment and running to the voluntary sector. The state pensions provided most elderly persons with the financial means to afford admission to a care home and if needed the local authority would supplement their income. In most of these care homes, people would have their own bed-sits and kitchenettes, but shared other facilities. Services such as meals and cleaning were provided in these homes. Initially, the people living in these places were rather healthy and required only a limited amount of support. However, increasing costs and changing ideas that resulted in a preference for independent living of the elderly led to the government stipulating in 1977 that an indication for admission to a care home was required. As the care home population aged, their needs in terms of nursing care increased.495 The characteristics of the care homes described above justify the conclusion that significant differences with the English hospices existed. Nevertheless, these care homes were to influence the development of care for the dying in the Netherlands in two ways. Firstly, in 1975 no less than 8.9 percent of the people aged 65 or older were living in such care homes. This was the highest percentage in history following from a continuous growth from 3.8 percent in 1950. From the late 1970s, this percentage started to decline again because of the indications that became required for admission.496 It is likely that the sheltered living conditions of these elderly people in which care was easily at hand, reduced the potential demand for care in institutions that resembled the English hospices. Thus, the care homes seem to have contributed to the fact that the need for the establishment of hospices was - in contrast to the situation in England - not widely felt in the Netherlands during the 1960s and 1970s. Secondly, during the early 1990s palliative care units were established in several care homes. This development is elaborated on in Section 5.5. The history of nursing homes in the Netherlands goes back to 1929 when a ‘hospital for the chronically ill’ was established in Beekbergen.497 After the Second World War these institutions became more common. A major reason for the increased popularity

494 Also known as homes for the elderly. In Dutch: bejaardenhuizen or verzorgingshuizen. 495 Bakker & Van Overbeeke, 2014, pp.232 - 235; Bijsterveld, 1996, pp.166-201. 496 Bijsterveld, 1996, p.208. 497 Boot, 2013, pp.238-239.

122 of these nursing homes was the changing character of hospitals. They became specialised medical institutes with more extensive possibilities for diagnostics and treatment. This resulted in shorter stays in hospitals. As a consequence, hospitals were no longer appropriate places for chronic, often elderly, patients. Moreover, the sickness funds would - in contrast to the pre-war situation - only pay for a stay in a hospital on medical grounds. This contributed to the transfer of elderly patients from hospitals to nursing homes. Over the years, the nursing homes became not only places where elderly patients in the final stages of their lives were cared for. They also provided short stays for reactivation, rehabilitation and respite care for patients who were supposed to return to their families or a care home.498 These changes drove the professionalisation of care in the nursing homes. Formal education, for instance, became more important and nuns were replaced by paid carers. Moreover, medical doctors who worked in these homes received more specialised training, and since 1989 they followed a specialised educational programme to qualify after obtaining their MD degree.499 The introduction of the AWBZ resulted in the growth of the number of nursing homes, because the provision of care in the nursing homes was covered more generously under this new act than under the previous arrangements, which had only covered half of the costs of the stay up to a maximum of three months under the ZFW from 1961.500 To a certain degree this growth had been foreseen. During the preparation of the AWBZ, it had been estimated that an unfulfilled demand of at least 13,000 nursing home beds existed.501 If this demand was to be fulfilled, a total number of 32,000 nursing home beds was considered necessary.502 The secure funding basis, however, did turn nursing home care into a growth sector beyond what had been expected. Examples of other social developments that contributed to this growth were the reduction of the amount of informal care available and the professionalisation of care.503 The number of full time medical doctors employed in nursing homes more than

498 Centrale Raad voor de Volksgezondheid, 1982; Oostvogel, 1989; Ribbe, Van Mens & Frijters, 1989. 499 Bakker & Van Overbeeke, 2014, p.247; Bijsterveld, 1996, p.138; Companje, 2008d, p.683; Huizinga, 1991, pp.263-265. 500 Centrale Raad voor de Volksgezondheid, 1982, p.26; De Pijper, Ribbe & Stoop, 1993; Oostvogel, 1989; Van der Hoeven, 1983, p.307. 501 Of these 13,000 beds, 7,000 beds were expected to be required for people suffering from somatic illnesses, while 6,000 beds were needed for psycho- geriatric cases. 502 Kerkhoff & Dols, 2008, p.734. 503 Bouwens, 1995, p.91; Kennedy, 1995, pp.97-98; Kerkhoff & Dols, 2008,

123 quadrupled between 1964 and 1970 to 140 in the latter year.504 By 1980, around 47,000 beds were available in 326 nursing homes.505 The costs associated with these and other additional services had been underestimated at the time of the implementation of the AWBZ. As a result, the premiums incorporated in the income tax increased from 0.4 percent in 1968 to 1.2 percent in 1971 and by 1980 they amounted to 3.2 percent of the taxable income.506

Nursing Homes as the Dutch Equivalent of the English Hospices?

Ten Have and Janssens have pointed out that two different histories of palliative care in the Netherlands are told.507 Whereas some would argue that palliative care started to develop with the establishment of hospices in the early 1990s, others claim that the nursing homes were the Dutch equivalent of the English hospices and thus the places where palliative care was developed and delivered. When initiatives were taken to develop ‘English style hospices’ in the Netherlands, the latter group argued that these were unnecessary as the nursing homes did already fulfil this role.508 In Chapter 2, we saw that hospices started to emerge in England from the late 1960s. The previous subsection demonstrated that it was actually around the same time that the number of persons cared for in nursing homes in the Netherlands increased sharply. Was the synchronicity of these developments a mere coincidence or can we say that the

pp.718-721. 504 Oostvogel, 1989. 505 Van Bottenburg, De Vries & Mooij, 1999, p.117. 506 Blaauwbroek, 1997b, p.128; Sociaal Economische Raad, 1980, p.10. In the final year of its existence, 2014, the AWBZ premium was 12.65% (Belastingdienst: Hoeveel moet u betalen? http://www.belastingdienst.nl/wps/wcm/connect/ bldcontentnl/belastingdienst/prive/werk_en_inkomen/sociale_verzekeringen/ premies_volks_en_werknemersverzekeringen/volksverzekeringen/hoeveel_ moet_u_betalen. Accessed 21 November 2016). 507 Janssens & Ten Have, 2001. 508 Baar, 1998b; Baar, 1999; Baar & Van der Kloot Meijburg, 2002; Corstens- Stieger & Van Huut, 1998, pp.10-11; Keizer, 1999; Michels, 1988, p.1315; Oostvogel, 1974, p.188; Schipper, 1995. Similar points of view have not been completely absent from the debates in England. Dr. L.T. Newman, attended the national symposium on care of the dying in 1972 on behalf of the Royal College of General Practitioners. This medical officer at an old people’s home argued: ‘we deal with the dying, and I think that, given a co-operative matron, most patients, very many of whom have no family whatsoever, can be given considerable help and happiness during the process of dying’ (Department of Health and Social Security, 1973, p.62).

124 nursing homes were indeed the ‘Dutch hospices’? In June 1980, a five-day conference was held at St. Christopher’s Hospice. During this meeting, 68 delegates from 16 countries gathered to discuss the past, present and future of hospice practice. The Dutch contributor was a nursing working in a nursing home, and had attended an educational programme at St. Christopher’s Hospice.509 It is interesting to see that she, in the edited collection Hospice: The Living Idea, which was published as a result of this conference, indeed considered nursing homes to be the ‘Dutch hospices’.510 To be sure, relevant similarities between Dutch nursing homes and English hospices can be identified. In addition to the temporal parallel with the emergence and expansion of hospices in England, the provision of terminal care was considered one of the tasks of the nursing homes throughout their existence.511 It has been reported that 9 percent of the somatic patients admitted to nursing homes during the early 1980s came to receive terminal care.512 Both institutions employed medical doctors and nurses to provide this care and aimed to provide relatively homely surroundings in comparison to hospitals. Especially, if we take into account that St. Christopher’s Hospice initially had the so-called Drapers’ Wing for 16 old, but not terminally ill, people, we can conclude that the actual differences between Dutch nursing homes and English hospices were not as large as might be expected.513 However, looking at the functioning of these two types of institutions, the dissimilarities dominate and simply equating nursing homes and hospices does not do justice to these dissimilarities. An example of such a difference is the size of the organisations. St. Christopher’s Hospice was - and is - one of the more sizable hospices in England and after an extension during the late 1970s counted a total of 62 beds.514 A survey conducted in 1980 found that the most common size of intramural specialist services for terminal care in Britain was between 21 and 30 beds, but that a wide range existed.515 The relatively small size of the hospices was mentioned as one of the

509 De Jong-Vekemans, 1985, p.51. 510 De Jong-Vekemans, 1981. 511 Boot, 2013, pp.238-239; Oostvogel, 1989; Ribbe, Van Mens & Frijters, 1989. 512 Ribbe & Van Mens, 1986. Data from a study conducted in 2001-2003 show that the total number of people admitted to a nursing home to receive palliative care was slightly under 6 percent of the total number of people admitted (Brandt, Deliens, Ooms, Van der Steen, Van der Wal & Ribbe, 2005; Brandt, 2006). 513 For example: Saunders, 1977. 514 St. Christopher’s Hospice, 1980, p.8. 515 Lunt, 1981, p.vi.

125 main enabling factors that allowed them to provide good care for dying patients.516 Both these numbers were substantially lower than the size of a Dutch nursing home at that time. The Centrale Raad voor de Volksgezondheid517 recommended a minimum size of 100 beds for a nursing home with either somatic or psycho-geriatric patients and at least 150 beds for nursing homes providing care for both patient groups in an advisory report published in 1972. These numbers had risen to 120 beds and 180 beds a decade later.518 Another example of the differences between the Dutch nursing homes and English hospices was that terminal care was only one of the types of care provided by the nursing homes and accounted for a small proportion of the work carried out. As mentioned before, nursing homes did also provide inpatient stays for people who required long term nursing care, reactivation, rehabilitation and respite care.519 In Chapter 2, we saw that the English hospices were initially not solely focused on providing care for patients who were dying. However, the more pain management became a distinctive strength of the hospices, the more their patient population came to consist of terminally ill cancer patients. The Drapers’ Wing at St. Christopher’s Hospice, for example, was closed and St. Luke’s Nursing Home in Sheffield changed its name into St. Luke’s Hospice. In the previous paragraphs, I focused on the institutional characteristics of hospices and nursing homes, but two additional aspects are important as well: medical technical skills and knowledge, and the philosophy of care. Although the nursing homes were the institutions closest to the English hospices from these perspectives, the differences - again - were substantial. This can probably best be illustrated by a statement by F.J.G. Oostvogel, a director of the nursing home Antonius IJsselmonde in Rotterdam, who claimed that the nursing homes could learn much from the experiences acquired in institutions like St. Christopher’s Hospice. Aspects he mentioned in particular are the management of pain and breathlessness, and time and willingness to listen to the patient. Writing in 1974, Oostvogel claimed that ‘special clinics for terminal patients, like St. Christopher’s Hospice in London’ would be unnecessary in the Netherlands if

516 Wilkes, 1973, pp.32-33. 517 Central Health Council. This council existed between 1958 and 1982 and was tasked with facilitating consultation between the government, the ministry responsible for health and voluntary agencies in health care. It was replaced by the Nationale Raad voor de Volksgezondheid (National Health Council) (NRV) (Boot, 2013). 518 Centrale Raad voor de Volksgezondheid, 1982, pp.59-61; Oostvogel, 1989. 519 Centrale Raad voor de Volksgezondheid, 1982; Oostvogel, 1989; Ribbe, Van Mens & Frijters, 1989.

126 the nursing homes were able to deal well with this task.520 Despite these differences with the English hospices, the widespread availability of nursing homes in the Netherlands, is one of the factors due to which care for the dying was likely not regarded as much of an urgent issue as it was by the founders of the English hospices. Moreover, by the time that the care for the terminally ill had started to attract more attention, representatives of the nursing homes expressed the view that this was part of their raison d’etre. In an advisory report on the functioning of nursing homes published in 1982, it was suggested that these institutions could also support terminal care givers and give advice to general practitioners and others working at the homes of terminally ill patients.521 Although these plans were not implemented, they illustrate that nursing homes were considered a relatively natural place within the health care system for terminally ill patients who could no longer be cared for at home.522 A related view was expressed by Secretary of State Hendriks during one of the first parliamentary debates in which terminal care featured explicitly. In 1976, he claimed that ‘we should not underestimate the amount of terminal care conducted in nursing homes nowadays. This is probably more than we are aware of’. He continued his speech by claiming that terminal care in hospitals was not as good as in the nursing homes.523 In the further development of palliative care, the nursing homes continued to play an important role. In Section 4.3, we will see how two initiatives, one centring on the nursing home of which Oostvogel was the director, were received within the health care field and how they formed the impetus for the first policy discussions directly related to the provision of palliative care in the Netherlands. In Chapter 6, we will see that the governmental policy with regard to palliative care from the mid 1990s also awarded a central position to the nursing homes.

520 Oostvogel, 1973; Oostvogel, 1974, p.188. 521 Centrale Raad voor de Volksgezondheid, 1982, pp.24-25. A similar suggestion was made by a GR report on home care for cancer patients published in 1991 (Gezondheidsraad, 1991; Gersons-Wolfensberger, 1992; Kraaipoel, 1992b; Schornagel, 1992, p.21). 522 Hoogerwerf, 1988; Michels, 1988. 523 Handelingen Bijzondere Commissie voor de Nota Bejaardenbeleid 1975 (13463) 1975/76, 1, pp.860-861.

127

Debating the Need for Hospices in Parliament

In the previous subsections, I have shown that the government assigned nursing homes a key role in the provision of terminal care. However, this does not imply that the idea of establishing organisations like the English hospices did not attract political attention during the 1970s. The issue of the improvement of terminal care emerged in parliamentary debates with the discussion of the Nota Bejaardenbeleid 1975. Especially the Christian parties classified terminal care as an underdeveloped area of medicine. This view was supported by Secretary of State Hendriks and he mentioned considering requesting the GR to advise him on this topic, but an actual request was not submitted. With regard to measures that could be taken to improve terminal care he suggested that training programmes for care givers had to pay more attention to this theme and that specialist institutions for the terminally ill might be established.524 During a follow up discussion in March 1976, one of the MPs suggested that hospice like organisations had to be established and funded by the AWBZ. This time the stance taken by the Secretary of State was less supportive as he rejected the idea that separate institutions for the terminally ill would be required. The reason behind this turn was the 1975 rejection of the ZFR to support projects in Rotterdam and Amsterdam and their position that terminal care should be delivered within the context of existing services.525 These projects and the responses to the question whether the ZFR should make funding available to them are elaborated on in the next section.

4.3 Trying to Obtain Support for Two Projects to Improve Terminal Care

Introduction

In Section 2.4, I argued that the English DHSS did not develop an explicit policy towards the modern hospices during the 1970s, but concurred with the need to improve care for the dying and made some contributions to accomplishing this aim. In

524 Kamerstukken II 1975/76, 13463 nr.6, pp.6-8. 525 Handelingen Bijzondere Commissie voor de Nota Bejaardenbeleid 1975 (13463) 1975/76, 1, pp.858-861.

128 the Netherlands, early initiatives to improve this form of care were less well received and - initially - failed to gain support from the ZFR. These two projects and the discussions on terminal care that resulted from their request for public support are the topic of this section.

Projects in Rotterdam and Amsterdam

During the 1970s, two foundations aiming to improve care for the dying were established. The first project was developed by Stichting Voorbij de Laatste Stad526 in Rotterdam. This organisation was established by B.H.P. van der Werf-Messing, a radiologist at the Daniel den Hoed Kliniek,527 and some colleagues, after she had described her experiences at St. Christopher’s Hospice during her inaugural lecture as professor of oncology at the Erasmus University in 1971.528 This foundation described its aims as providing loving and respectful care for the terminally ill, and conducting and disseminating research on how such care can best be provided.529 After a failed attempt to establish a clinic for terminal care, Stichting Voorbij de Laatste Stad focused on the development of a terminal care team that would work in nursing home Antonius IJsselmonde in Rotterdam to coordinate, stimulate, initiate and support the provision of terminal care within this institution. The patients cared for by this team would not be concentrated in a special wing, but would be part of the already existing departments. From the early conception of this project, the developments in St. Christopher’s Hospice and St. Luke’s Nursing Home - the two English hospices that the people involved had the strongest connections with - were used as a source of inspiration. However, these English institutions were not used as a blue print for the

526 Foundation Beyond the Last City. 527 This hospital was a specialist cancer hospital in Rotterdam, which later became part of the University Hospital in this city. 528 Aarnoudse, 1999, p.11; Bruning & Klein Hesselink, 1985a; Kunkeler, 1971; Oostvogel, 1979; Van Gennip-Horsten & Schnabel, 1980, p.1. 529 Nationaal Archief, Den Haag, Ministerie van Welzijn, Volksgezondheid en Cultuur en haar taakvoorgangers, Directoraat-generaal Volksgezondheid, nummer toegang 2.15.65, inventarisnummer 1378, Stichting ‘Voorbij de laatste stad’ by C.J.B.J. Trimbos, November 1976. Hereafter, this archive will be referred to as NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1378. All references to archival materials available in the Nationaal Archief of the Netherlands will be presented in this abbreviated format after a first full reference.

129 way in which they wanted to organise the care.530 One of the nurses who was involved in the project and knew the situation at St. Christopher’s Hospice well, because she had trained in this hospice, described their intentions as follows:

It was thought by some that Antonius IJsselmonde would be a terminal home comparable to St. Christopher’s in London, but this has never been the intention. Time will have to make clear if a special department or unit for terminal patients should be created. For the present the purpose is to try to fit the project into the existing structure of the nursing home and to evaluate the result.531

Two research projects based on the experiences of this terminal care team were proposed. Firstly, the foundation suggested to register and describe the medical, nursing, psychological and pastoral care given to the patients to gain systematic knowledge about care for the dying. This knowledge could inform subsequent in-depth research projects. Secondly, a research project on the interaction between dying persons and their environment was suggested. The foundation expressed the wish to extend the care provision and research projects to people living in the community, but due to financial constraints this was deferred until a later moment.532 The second plan was developed by Stichting Terminale Zorg Amsterdam en Omgeving.533 Taking inspiration from St. Christopher’s Hospice, this organisation aimed to establish a separate ward for 25 terminally ill patients in a nursing home as well as a specialised home care team for dying patients.534 Although this foundation hoped to add some research to the more practical aspects of the project, a research plan was not developed. Also in terms of its practical implementation, such as finding a nursing home willing to host the new ward, the project was less developed than the initiative in Rotterdam.535

530 Boer, 1977; Oostvogel, 1985; Van Gennip-Horsten & Schnabel, 1980, pp.3-4. 531 De Jong-Vekemans, 1981, p.182. 532 Aarnoudse, 1999, p.10; Oostvogel, 1979; Nationaal Archief, Den Haag, Ministerie van Welzijn, Volksgezondheid en Cultuur en haar taakvoorgangers, Directoraat-generaal Volksgezondheid, nummer toegang 2.15.65, inventarisnummer 1383, Rapportage van de Projectgroep Terminale Zorg aan de Staatssecretaris, November 1977. 533 Foundation Terminal Care Amsterdam and Surrounding Areas. 534 Van Overeem, 1976. 535 NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1383, Rapportage van de Projectgroep Terminale Zorg aan de Staatssecretaris, November 1977. See also: Radio interview with Gmelich Meijling representing Stichting Terminale Zorg Amsterdam en Omstreken in NRCV Podium on 11/9/1975. (VPRO Radioarchief: Wie wat bewaart… vervolg… (2). http://weblogs.vpro.nl/radioarchief/2008/09/26/wie-wat-bewaart%e2%80%a6-

130

AWBZ Funding from the ZFR?

Both organisations requested grants from the ZFR To cover the expenses of their projects.536 The vote of the ZFR on the subsidy for these research projects in November 1975 resulted in a rejection with around two thirds of the votes against the proposal.537 This decision was based on the following three arguments, of which the first one was decisive. Firstly, the ZFR considered research involving terminal patients unethical. Secondly, they thought that literature research would have to be conducted before research could be relevantly proposed. Finally, they had serious doubts about the applicability of the research outcomes of the projects in other circumstances. In the letter that the ZFR sent to VoMil in February 1976 about the rejection of the terminal care project grant proposals, the ZFR indicated that it did not consider itself the appropriate organisation to develop further initiatives in the field of terminal care, but it recommended that VoMil tasked the Gezondheidsraad538 (GR) with preparing an advisory report given the importance of the topic. The ZFR also put forward the view that the establishment of separate departments or institutions to care for patients nearing the ends of their lives was undesirable.539

vervolg-%e2%80%a6-2/#more-1376. Accessed 12 August 2013). 536 Stichting Voorbij de Laatste Stad initially approached the Koningin Wilhelmina Fonds - the main charity for cancer research in the Netherlands - for funding, but its application was rejected (Hoffman, 1975). 537 "Vooral ethische bezwaren: Ziekenfondsraad wijst subsidie onderzoek stervensbegeleiding af”, 1975. 538 Health Council. The GR is an advisory body that was established in 1902. Although its range of duties was wider during its earlier existence, the Health Act of 1956 defined its position as an independent scientific body that advises ministers and Parliament on matters related to public health, and health and health care research. Membership of the council and committees of the GR is based on scientific expertise, which was in contrast to the most closely related organisation in England, the Central Health Services Council (CHSC). The members of this organisation and its standing advisory committees were a mix of representatives from medicine, local government, and professionals knowledgeable on specific topics (Rigter, 1992, pp.226-227). For further information on the GR see: Bal, Bijker & Hendriks, 2002; Bijker, Bal & Hendriks, 2009; Hendriks, Bal & Bijker, 2004; Rigter, 1987; Rigter, 1992. 539 NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1379.

131

VoMil’s Project Group on Terminal Care

VoMil did indeed start preparing an advisory request to the GR. However, the Stichting Terminale Zorg Amsterdam directly approached VoMil and was granted a meeting. As a result of this meeting between representatives of the foundation and civil servants, the desirability of an advice by the GR was reconsidered and a project group was established at VoMil. The arguments to prefer the usage of a project group over a GR report were that the former would likely lead to quicker results and could test ideas in practice.540 This proactive response by VoMil might also have been stimulated by questions asked in both Houses of Parliament and the discussion of the Bejaardennota 1975.541 During a debate on the Bejaardennota 1975, several MPs mentioned that terminal care was not well attended to. A. Kappeyne van de Coppello presented this engagingly when she stressed that just ‘30 lines in a document of 180 pages‘ addressed this topic, whereas one of her colleagues asked the Secretary of State to pay more attention to extramural care of the dying. The rejection of the ZFR to fund the projects in Amsterdam and Rotterdam was discussed in this context. During the debate, MPs pressed for a quick and positive decision regarding the GR advisory request.542 In October 1976, the first meeting of the project group took place. Over the course of its six meetings, 17 people participated in these gatherings. Among the people invited were representatives of the foundations that proposed the projects in Rotterdam and Amsterdam, the ZFR, VoMil, and persons who were known for their interest in and experience with terminal care. The work of this project group focused mostly on advising on the need for a GR report and the development of a research project.543 In the final report, which was published in November 1977, the project group recommended that the Secretary of State - given the composition of the project group not unexpectedly - facilitated the start of the research projects of Stichting Terminale

540 This idea that the project group would be able to conduct action research projects was expressed during the first meetings of the project group, but was rejected during later meetings (Handelingen II 1976/77, 47, p.2946; NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1378). 541 Van den Heuvel, 1997; Handelingen I 1976/77, 17, p.505; Kamerstukken I 1975/76, 13600 XVII, nr.57a, p.3. 542 Handelingen Bijzondere Commissie voor de Nota Bejaardenbeleid 1975 (13463) 1975/76, 1, p.857-861; Kamerstukken II 1975/76, 13463, nr.6, p.6-8. 543 NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1379, Notitie betreffende de instelling van een projectgroep terminale zorg, 1 November 1976 & Kort verslag van de bespreking inzake de voorbereiding van de instelling van een projectgroep terminale zorg, 21 October 1976.

132

Zorg Amsterdam en Omgeving and Stichting Voorbij de Laatste Stad. A report by the GR was no longer deemed necessary as duplication of the work conducted by the Project group was expected.544 The Secretary of State supported the outcomes of the deliberations by the project group and sent a letter reporting the conclusions of the project group to the ZFR in March 1978.545 Stressing the importance of experience and knowledge that could be obtained through the execution of concrete research projects, the Secretary of State requested the ZFR to reconsider funding of the project of Stichting Terminale Zorg Amsterdam en Stichting Voorbij de Laatste Stad.546

Grants Awarded to the Project in Rotterdam, but not to the Project in Amsterdam

In the meanwhile, Stichting Voorbij de Laatste Stad had managed to obtain fl 100,000547 for its project from private sources and another fl 100,000 from the local authority. Although these funds were not sufficient to implement the whole range of services and research originally planned, it allowed them to start a three-year pilot project in 1977. A terminal care team, consisting of a psychologist, medical doctor and nurse, was appointed to work in nursing home Antonius IJsselmonde.548 Further staff members would be recruited once financial resources were secured.549 In 1979, the projects of the Stichting Voorbij de Laatste Stad and the Stichting Terminale Zorg Amsterdam en Omgeving were discussed again in the ZFR. The Rotterdam initiative was awarded AWBZ funding of up to fl 4.2 million for five years

544 NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1383, Rapportage van de Projectgroep Terminale Zorg aan de Staatssecretaris, November 1977. 545 Handelingen II 1978/79, 17, p.1108. 546 In 1979, the project group on terminal care considered its remaining task to act as an advisory committee for the research projects that would be conducted with the help of the AWBZ funding provided by the ZFR. However, when the civil servants who worked with the project group read that the ZFR was establishing a committee, they agreed that the project group had become superfluous and did not arrange any further meetings (NL-HaNA, Directoraat- generaal Volksgezondheid, 2.15.65, inv.nr. 1379, Memorandum Ministerie van Volksgezondheid en Milieuhygiëne, 18 October 1979; NL-HaNA, Directoraat- generaal Volksgezondheid, 2.15.65, inv.nr. 1383, Letter of Ministerie van Volksgezondheid en Milieuhygiëne to Ziekenfondsraad, 16 March 1978). 547 When the Euro was introduced, it was worth fl 2.20371. 548 Boer, 1977; "Meer vragen dan antwoorden bij project stervensbegeleiding”, 1979. 549 NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1378; NL- HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1383.

133 starting in 1980.550 Oostvogel attributed this positive decision not only to the work of the VoMil project group, but also to the experience in running a nursing home of people who proposed the project and an increased perception that deficiencies existed in the provision of terminal care in the Netherlands. The media played an important role in the latter development. For instance, the initial rejection of the proposals in 1975 had received rather negative coverage, including a headline reading: ‘In the Netherlands one just has to die in the bathroom’.551 Moreover, an influential breaking television programme, Een Groot Uur ‘U’, did broadcast film material they had recorded at St. Luke’s Nursing Home in Sheffield, followed by a discussion with experts, in which this type of care was portrayed favourably, on 27 November 1978.552 The plan of the Stichting Terminale Zorg Amsterdam en Omgeving, however, was considered underdeveloped and did not receive funding from the ZFR immediately.553 The Stichting was informed that the ZFR would be willing to fund the project once a well-founded project plan and budget were submitted. When preparing these documents, the Stichting did not succeed in its attempts to interest a nursing home in hosting the specialist unit the Stichting aimed to establish. Hospitals were asked to provide the bed capacity required as well, but none of Amsterdam’s hospitals was willing, despite a surplus of around 2,000 hospital beds existing in the city. Examples of the arguments used were that the demand for such a unit had not been proven, that the nursing homes did already provide care for terminally ill patients, and the fear of becoming stigmatised as a place of death.554 This resulted in a shift towards an extramural focus for the project in Amsterdam. A merger with the Stichting Terminale Thuiszorg Amsterdam555 was considered expedient and in 1982 this successor organisation556 submitted a proposal to the ZFR in which the establishment of a centre for terminal care was proposed. Such a centre had to guarantee the continuity of care for terminal patients and their families.557 This new arrangement was discussed, but not approved by the members of the ZFR in

550 "Stervensbegeleiding kan gesubsidieerd”, 1979; "Stervensbegeleiding krijgt subsidie van Ziekenfondsraad”, 1979; "Subsidie van vier miljoen voor stervensbegeleiding”, 1979. 551 "In Nederland moet men maar sterven in de badkamer”, 1975. See also: Boer, 1976; Van Weerlee, 1976. 552 Hydra, 1978; Oostvogel, 1979, p.36. 553 Ziekenfondsraad, 1979, p.1157. 554 "Hulp bij sterven in Amsterdam nog een probleem”, 1980; "Reële keus voor sterven in eigen huis”, 1982. 555 Foundation Terminal Home Care Amsterdam. 556 This organisation kept the name Stichting Terminale Thuiszorg Amsterdam. 557 Ziekenfondsraad, 1985, pp.6-8.

134

1982. The ZFR argued that the project in Amsterdam may result in the establishment of a nationwide network of these centres, while further institutionalisation and professionalisation of terminal care was to be avoided. Instead, terminal care had to be provided by the already existing health care providers. Therefore, fear existed that the role of other providers of primary care would be eroded by the establishment of the proposed centre.558 The ZFR nevertheless acknowledged that lacunae existed in the provision of terminal care, especially in the home situation. To investigate this, the ZFR established a committee on terminal care in 1982.559 The projects that resulted from this work will be discussed in Section 5.3.

Further Development of the Projects in Amsterdam and Rotterdam

The final question to address in this section is what happened to the projects by the Stichting Voorbij de Laatste Stad and the Stichting Terminale Thuiszorg Amsterdam. Although the ZFR did not fund the project, the Stichting Terminale Thuiszorg Amsterdam decided to implement a less ambitious version of its plan in 1983 with financial support from private funds. Moreover, manpower was contributed by other home care organisations. The main service it provided was a 24/7 availability service. The Stichting sought integration of its work within the already existing health care services and thought that it might be able to discontinue its work after the project.560 Indeed, the Stichting Terminale Thuiszorg Amsterdam did hand over its work to the existing home care organisations in Amsterdam on 1 January 1987.561 The financial contribution of the ZFR enabled Stichting Voorbij de Laatste Stad to extend its project. During the main intramural project, which ran in Antonius IJsselmonde from 1980 to 1985, terminal patients were cared for on a single ward. This project resulted in a series of publications and a symposium in 1984/1985.562 The

558 Ziekenfondsraad, 1985, pp.6-8. Moreover, a newspaper article on this topic reported that WVC had already informed the ZFR that it would not approve a subsidy for this project ("Ziekenfondsraad zal stervensbegeleiding mogelijk inpassen”, 1982). 559 Klein Poelhuis, 1985; "Nieuw instituut voor terminale zorg afgewezen”, 1982; "Stervensbegeleiding”, 1982; "Ziekenfondsraad zal stervensbegeleiding mogelijk inpassen”, 1982. 560 Klein Poelhuis, 1985. 561 Kamerstukken II 1986/87, 19434, nr.7, pp.11-12. 562 Bruning & Klein Hesselink, 1985b; Stichting Voorbij de Laatste Stad & Integraal Kankercentrum Rotterdam, 1985.

135 main outcome of this project was that by taking some specific measures, nursing homes could fulfil an important role in the care for the terminally ill. This concerned people who had already been living in the nursing home before becoming terminally ill as well as those with an indication for terminal care.563 The interest in terminal care that had developed in Antonius IJsselmonde did not fade after this project and this nursing home went on to establish an organisation for terminal home care in three neighbourhoods of Rotterdam (see Section 5.3) and it became the first nursing home to establish a palliative care unit in 1993 (see Section 5.5).564

4.4 Palliative Care and Euthanasia: Separate Topics565

No Hospices because of Euthanasia?

The emergence of modern hospice care in England was embedded in a more general unease about the increasingly technological character of medicine and the consequences this had for the care of the dying. Although a similar disquiet with medical technology that prolonged life beyond what was deemed desirable was felt in the Netherlands from the late 1960s, this did not immediately result in a drive to establish new institutions for the dying. Moreover, the initiatives discussed in Section 4.3 took inspiration, but did not resemble the English hospices closely. This observation was, however, one of the origins of the debates about euthanasia that emerged during this period. Therefore, a relevant question is whether the late emergence of hospices in the Netherlands can be attributed to the growing acceptance of euthanasia.566 Several overseas commentators have indeed argued that this was the

563 Baar, 1998b, p.6. 564 Baar, 1998b, p.4; Bruning, 1989. 565 The sections on euthanasia in this thesis do not aim to give a comprehensive overview of the euthanasia debate. Readers interested in such accounts, may wish to turn to: Griffiths, Bood & Weyers, 1998; Griffiths, Weyers & Adams, 2008; Hoogerkamp, 1992; Kennedy, 2002; Leenen, 1987; Legemaate, 2004; Weyers, 2004. 566 Unless indicated otherwise, I will follow the current Dutch, legal definition of euthanasia in this thesis. This is a relatively narrow one and has also been used by, for example, a Taskforce of the EAPC. This implies that euthanasia is defined as voluntary killing on the request of a patient by a medical doctor. The

136 case. To give some examples:

Herbert Hendin, a professor of psychiatry at New York Medical College and the Executive Director of the American Suicide Foundation, visited the Netherlands during the 1990s to conduct interviews for his book Seduced by Death, in which he wrote:

Pressure for improved palliative care appears to have evaporated in the Netherlands. Discussion of care for those who are terminally ill is dominated by how and when to extend euthanasia to increasing groups of patients.567

David Cundiff was an oncologist and hospice physician who practised in California. He advocated hospice programmes as an alternative to the legalisation of euthanasia and claimed:

The Dutch experience with euthanasia provides a frightening precedent. It demonstrates that the absence of the hospice alternative greatly increases the attractiveness of euthanasia as an option.568

David Jeffrey, a GP who became an Honorary Senior Lecturer in Palliative Medicine at the University of Edinburgh and chair of the Ethics Committee of the Association for Palliative Medicine, supported his argument against physician assisted suicide by offering palliative care as an alternative. About the Netherlands he wrote:

In the Netherlands, the focus on euthanasia as a way of ensuring a good death has reduced the range of other options at the end of life.569

The final example comes from David Alton, a teacher by training who became a cross- bench peer in 1997. In a discussion about the Dutch practice of euthanasia and the related developments in British society in the House of Lords in 1998 he stated:

law provides several restrictions regarding the situations in which euthanasia is permitted. For instance, the patient has to be suffering unbearably and has to express a sustained wish to receive euthanasia. Physician assisted suicide is included under the Dutch euthanasia legislation (Chambraere, Centeno, Hernández, Van Wesemael, Guillén-Grima, Deliens & Payne, 2011). This choice has been made for pragmatic reasons, such as readability, and should not be taken as a denial of the change that this concept underwent over time. However, the core elements such as the voluntariness of the request by the patient and the fact that only medical doctors are allowed to administer euthanasia have been fairly stable over time. 567 Hendin, 1997, p.214. 568 Cundiff, 1992, p.103. 569 Jeffrey, 2009, p.70.

137

The hospice movement is virtually non-existent in Holland. You do not need hospices, good palliative care or relief from suffering or pain if you kill the patient instead.570

Emergence of Euthanasia as a Topic for Public Debate

Euthanasia has not been discussed earlier in this chapter. As I will argue later, the impact of the debates related to euthanasia on the initiatives to improve care for the dying was limited. Nevertheless, these developments were taking place at the same time. Therefore, a brief overview of the emergence of these debates will be given below. From an international perspective, discussions related to euthanasia emerged late in the Netherlands, but resulted in the acceptance of euthanasia within a relatively short time span. Whereas the Voluntary Euthanasia Legalisation Society in London was established in 1935 and the Euthanasia Society of America was founded in 1938, organisations advocating euthanasia emerged in the Netherlands during the early 1970s.571 In 1969, issues related to prolonging life and decision making at the end of life became prominent in the public debate. It was suggested that doctors should terminate the life of a patient if there was no reasonable hope of recovery. The impetus for this renewed debate was the publication of a book on medical power and medical ethics by J.H. van den Berg, a neurologist and professor in Leiden.572 In this book, Van den Berg argued that medical technological power had emerged over the past years and was causing serious suffering among patients. To counterbalance this medical power, he called for a new medical ethics, which consisted of open communication with the patient and the acceptance of terminating life if medical power had created suffering. Ending the life of the patient could take place by ending medical treatment as well as by active medical intervention, such as giving the patient a lethal injection.573 This publication coincided with radical societal changes, such as a quick secularisation. Not only did the Dutch secularise rapidly during the 1960s, the churches - Protestant as well as Catholic - themselves changed as well. Values such as tolerance and solidarity dominated over more traditional doctrines. Consequentially, the emergence

570 HL Deb, 06 May 1998, vol 589, col 720. 571 Dowbiggin, 2003; Dowbiggin, 2005; Kennedy, 2002; Mannes, 1973. 572 Van den Berg, 1969. 573 Van den Berg, 1969.

138 of values related to anti-traditional, anti-authoritarian and individualistic positions was not confined to the non-religious parts of the Dutch population.574 These societal changes were reflected in the changing public perception of the acceptability of euthanasia during the late 1960s. Since 1966, the Sociaal en Cultureel Planbureau (The Netherlands Institute for Social Research) (SCP) has polled Dutch opinion using the same question: ‘Should a doctor give a lethal injection at the request of a patient to put an end to his suffering?’ The answers to this question illustrate that an important shift in public opinion had occurred by the early 1970s. Whereas 40 percent of the respondents had answered this question affirmatively in 1966, this percentage had risen to 53 percent by 1970.575 An overview of the results of the SCP survey for the period 1966-1991 is given in the table below.

Year Yes (%) Depends (%) No (%) 1966 40 12 49 1970 53 24 24 1975 51 32 16 1980 52 36 12 1985 55 33 12 1991 58 33 9

Table 1 - Overview of answers to SCP survey question on the acceptability of euthanasia for the years 1966 to 1991

Although some fellow medical doctors criticised Van den Berg’s argumentation and his representation of the actual usage of medical power or - inspired by the ideas and publications of E. Kübler-Ross and J. Hinton - argued that medical doctors should not help the patient to die, but to support them while alive, they shared his concerns about artificially prolonging life when the quality of life of the patient was limited.576 These responses took place in the context of the emergence of a new generation of medical doctors in favour of reform in the 1970s.577 They were inspired by thinkers such as Ivan Illich and focused on topics like democratisation and the emancipation of

574 Kennedy, 2009. 575 Kennedy, 2002. 576 De Lange, 1970; "Stervensbegeleiding: Medisch-ethische plicht?”, 1970. 577 Hellema, 2012, pp.54-58.

139 patients.578 Moreover, Van den Berg’s book caused public discussion as well as political debate.579 As a result the GR was asked to prepare an advisory report on the questions regarding medical power and ethics. Just when this report was about to be published, a euthanasia related case was brought to court in 1973.580 This court case, which was known as the case Postma, concerned the prosecution of a doctor who terminated the life of her mother, who was in bad health and living in an institution, on her request by administering a high dose of morphine. The court sentenced Postma to one year’s probation under suspended sentence of one week’s imprisonment, because she had not been sufficiently meticulous in the procedure she followed. This case was particularly important because of the jurisprudence it created on the circumstances under which euthanasia was permissible.581

Connections between the Development of Palliative Care and the Euthanasia Debate

Although we might expect a link between the interest in improving terminal care by the project group that was established by VoMil and the emergence of the euthanasia debate during the previous years, this issue is remarkably absent from the debates of this project group. This may be explained by the background of the project group as a response to the decision of the ZFR, which resulted in a fairly focused discussion of the desirability of the research projects.582 Also if one investigates the debates about euthanasia and the development of palliative care in the Netherlands more broadly, it becomes clear that these two topics developed mostly independent of each other during the 1960s and 1970s. Several reasons to

578 Achterhuis, 1979; Illich, 1976. 579 A court case on the acceptability of termination of life-support of a young woman in an irreversible coma on artificial respiration had been discussed widely in the media in 1967. This contributed to the public interest in the book written by Van den Berg (Griffiths, Bood & Weyers, 1998, p.47). 580 In 1952 a doctor stood trail for killing his brother, who suffered from advanced tuberculosis on his request. In contrast to the case of 1973, however, this did not result in wide spread public debate on the acceptability of terminating the life of terminally ill people (Griffiths, Bood & Weyers, 1998, p.44). 581 Weyers, 2004. The fact that Postma did dare to terminate her mother’s life and the relatively lenient sentence, fit with a broader social and political context in which some considered civil disobedience a virtue and the authorities tolerated some of these actions conditionally (Hellema, 2012, pp.80-84). 582 NL-HaNA, Directoraat-generaal Volksgezondheid, 2.15.65, inv.nr. 1378.

140 explain this situation can be identified. Firstly, the public discussion on euthanasia in the Netherlands fairly soon became a predominantly legal and ethical discussion rather than a medical one. As a consequence, the voices of the medical practitioners who considered palliative care as an alternative or at least something that required development in the context of the euthanasia debate did not reach widely.583 Moreover, respecting the patients’ autonomy was the dominant argument in favour of euthanasia. Some of the proponents of euthanasia in the Netherlands were familiar with the care provided in the English hospices and visited these places, but thought palliative care to be something different. In a radio interview in 1977, Klazien Sybrandy, one of the most ardent and influential euthanasia advocates reflected on her visit to St. Christopher’s Hospice by claiming that it had been interesting to see what the people at this hospice were doing for terminally ill patients. However, this was just not what she advocated, because proponents of euthanasia wanted patients to be able to decide themselves when they wanted to terminate their lives.584 Additionally, following Van den Berg’s analysis, the medical technological power exercised by doctors was perceived as a serious problem during the early 1970s. In such a situation, more care delivered by medical doctors in the form of palliative care was an unlikely alternative. Euthanasia, however, could present a possibility to redress the disturbed power balance and was mentioned in his publication. Another reason why the establishment of hospices and other forms of improved terminal care were not linked to euthanasia in public debates may be that the cases of euthanasia that continued to spark the public debate on euthanasia did relatively often concern patients suffering from other diseases than cancer, while the English hospices - in practice - focused relatively strongly on the care of cancer patients during their first years and gradually extended their approach to other diseases. The coincidence of these developments created a situation in which the approach pioneered in the English hospices was not easily associated with the patients who became publicly known in the Dutch euthanasia debate.

583 The, 2009. 584 Permanent Wave, 22 August 1977, minute 24-26. Available at: VPRO Radio Archief: De levenseindekliniek. http://weblogs.vpro.nl/radioarchief/2011/01 /27/de-levenseindekliniek. Accessed 3 March 2011.

141

4.5 Comparative Reflections and Conclusions

Initiatives in Hospitals

This chapter covered the developments related to palliative care in the Netherlands during the 1970s. Before moving to the comparative conclusions, another development that was inspired by the English hospice movement and took place during this period needs mentioning. Some of the initiatives to improve terminal care arose in some hospitals. These were often isolated initiatives resulting from the interests of individual members of staff. The best known examples of such initiatives were the unit at the Antonius Ziekenhuis in Nieuwegein and the pain team at the St. Hippolytus Ziekenhuis585 in Delft. At the Antonius Ziekenhuis, a separate unit for terminal care was opened as part of the department for internal medicine in 1979. The nursing staff was a driving force behind the establishment of this department, which cared for terminally ill patients that were already treated at the hospital. However, not all dying patients were transferred to this ward.586 During the early 1970s, a pain team was established at the St. Hippolytus Ziekenhuis. Although not formally a ‘palliative care team’, this team was considered to be well equipped to provide care for terminally ill patients.587 Inspiration for this development was drawn from the English hospice movement. Anaesthetist P. Admiraal, who was one of the driving forces behind the developments in Delft, visited St. Christopher’s Hospice several times. However, the St. Hippolytus Ziekenhuis decided not to adopt the ‘St. Christopher’s model’ as far as the concentration of dying patients on a particular ward was concerned. The arguments behind this decision were that such a ward may be perceived as sinister and threatening. Moreover, the existing wards did already have a sufficient number of single rooms available.588 During the period covered in this chapter, the examples above were local initiatives. During the 1990s, however, more schemes to develop palliative care within hospitals were developed. They are discussed in Section 5.5.

585 Later part of Reinier de Graaf Groep. 586 "Als je dood gaat word je op de badkamer gezet”, 1980; Biesenbeek, 1985, p.9. 587 The interest of the staff members of this hospital in terminal care can also be illustrated by a symposium on terminal support they organised in 1976 ("Terminale begeleiding (I)”, 1977). 588 Admiraal, 1998, p.45.

142

Service Development

If we compare the development of services for the dying in England and the Netherlands during the 1960s and 1970s, we can conclude that differences dominated. While England came to be the cradle of hospice care, care for the dying in the Netherlands was developed in a variety of settings. Nursing homes occupied an important position within this field. In Section 4.2, I argued that these nursing homes cannot be thought of as the Dutch hospices, but nevertheless contributed to the absence of a feeling that hospices had to be established in the Netherlands during the 1960s and 1970s. However, it can also be observed that the idea that something is missing in a health care system might emerge more readily in a unified health care service like the NHS than in the Dutch health care system with its corporatist structure. A second conclusion with regard to the development of services for the terminally ill is that Dutch medical practitioners were well aware of the hospices that had been established in England. The people involved in projects to improve terminal care in Rotterdam and Amsterdam, as well as at the hospital in Delft visited St. Christopher’s Hospice, but made informed decisions not to follow this model. Their reasons were in part theoretical, but pragmatism also played a role. The latter was most visible in the case of the project of the Stichting Terminale Zorg Amsterdam en Omgeving, which had to abandon its plan to establish a specialist unit for terminal care in a nursing home or hospital, because none of the organisations in the region was willing to host the unit. Overall, the Dutch initiatives had a closer connection to the already existing health care services than the English independent hospices during this period.

Impact of Policy

I discussed the responses of the ZFR and VoMil to the plans for projects to improve care for the dying in Rotterdam and Amsterdam in Section 4.3. The rejection of the project proposals by the ZFR in 1975 showed that the response to these initiatives was less welcoming than the one received by the English hospices during the 1960s and 1970. However, the rejections were primarily due to a misapprehension of the research proposals included in this plan. This can be illustrated by the fact that VoMil was willing to act proactively and establish a project group. Chapter 2 showed that the DHSS took a positive stance towards the improvement of

143 care for the dying, but was unsure how the hospices fitted within the NHS structures. No clear decisions on this were made during the 1970s. This is a contrast with the situation in the Netherlands, where policymakers - at the ZFR as well as VoMil - explicitly took the position that additional institutions to care for the dying were undesirable. Hence, these bodies decided that the establishment of such institutions should not be supported. This position was maintained during the decades that followed, until it became politically untenable during the mid 2000s (see Chapter 6).

Euthanasia and its Impact on the Development of Palliative Care

A major difference between the developments in the two countries can be seen with regard to the interaction between euthanasia and the development of palliative care. The analysis of the forces that put euthanasia on the public agenda in the Netherlands in Section 4.4, showed that two types of changes played an important role. On the one hand we find a combination of cultural changes, while on the other hand the consequences of medical-technological developments were not considered without drawbacks. It is in this latter category that we can see a clear similarity with the forces that formed an impetus for the development of hospice care in England.589 Like Van den Berg, the pioneers of hospice care did not approve of prolonging life when treatment would cause more suffering and the benefits of honest communication between doctor and patient were widely acknowledged in the hospices. However, the suggested ways of dealing with these issues in the two countries stood in clear opposition to each other. Whereas the hospice pioneers argued in favour of compassionate care, Van den Berg perceived euthanasia to be a suitable way to counter medical power. In combination with the societal changes in the Netherlands and the jurisprudence that had been created in the Postma case, this provides an explanation for the differences in the situation in England and the Netherlands. The dissimilarity in preferred action, but the common background of pioneers of hospice care in England and advocates of euthanasia in the Netherlands, was succinctly summarised by the concluding paragraph of a letter that Cicely Saunders wrote to a Dutch advocate of euthanasia after meeting him at a conference:

589 Enkelaar, 1999, pp.27-28.

144

I do not see any need for angry debate between us but I am afraid I think we have to accept that we are working for very different objectives, even though we have a common desire to relieve suffering.590

Another important dissimilarity between England and the Netherlands is the connection between the development of palliative care and euthanasia during this period. Although international commentators claimed that the Netherlands did not have hospices, because of the acceptance of euthanasia, I have argued that palliative care and euthanasia were considered mostly independent topics. Good care for the dying was needed, but to respect the autonomy of the patient euthanasia had to become an option as well. Moreover, I have shown that the need for hospices in the Netherlands was probably not felt as urgently, because of the existence of nursing homes - and to a lesser extent - care homes. Additionally, inspiration was taken from the English hospices, but people who took initiatives to improve care for the dying adjusted these models to suit their local circumstances in a nursing home, a hospital or home care. This was in contrast to the situation in England where the hospice pioneers argued that euthanasia would be needless if good palliative care was provided. Moreover, these people actively disseminated their message and thus seem to have had a significant impact on the debates about euthanasia in England and internationally.

590 Saunders, 1988b, p.308.

145

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

Politics and Society during the 1980s and early 1990s

After the long 1960s, a new period arrived in which the Christian Democratic parties - from 1980 united in the merged party Christen Democratisch Appèl591 (CDA) - dominated the political scene. The 1977 and 1981 elections resulted in the formation of cabinets led by A.A.M. van Agt, which were succeeded by three cabinets led by R.F.M. Lubbers from 1982. Most of this time, the major coalition partner was the liberal VVD. From the mid 1970s, it was becoming increasingly clear that the economic downturn had made the Dutch welfare state in its existing form unsustainable. Although attempts were made to limit the growth of public expenses, significant budget cuts were only implemented by the governments led by Lubbers when the oil crisis of 1979 had caused a further decline of the economic situation.592 Moreover, a governmental preference for neoliberal market based policies emerged during the 1980s. For the VVD these ideas were rooted in traditional liberal thought, whereas the CDA had a wider agenda in the sense that it wanted to create a ‘caring society’593 in which members took responsibility for their own and each other’s wellbeing rather than expecting the state to provide.594 As a result, the position of the state as most appropriate actor to resolve societal problems, which had been mostly unquestioned

591 Christian Democratic Appeal. 592 Andeweg & Irwin, 2009, pp.212-213; Visser & Hemerijck, 1997; Wielenga, 2009, pp.270-273; Woltjer, 1992, pp.486-488. 593 In Dutch these ideas were referred to with the terms ‘zorgzame samenleving’ and ‘verzorgingsmaatschappij’. 594 This ideal was a contemporary interpretation of doctrines of ‘soevereiniteit in eigen kring’ and ‘subsidiariteit’ (see Chapter 3).

146 during the 1970s, eroded during the decade that followed.595 Also within the health care sector, cost containment became an important theme. When a coalition of CDA and VVD came to power in 1982, the Secretary of State, J.P. van der Reijden, was made responsible for achieving a reduction of health care expenditure of around fl 3 billion. Half of this money would have to be saved by implementing health care budgets. Other measures were a reduction of hospital beds, and changes in the sickness fund insurances.596 The task of the successor of Van der Reijden, D.J.D. Dees, was to implement a further fl 2 billion budget cut in the health care sector. Under the new cabinet, the main focus for cost containment shifted towards reforming the health insurance system. The Dekker committee was appointed to advise on this topic.597 Although it took until 2006 before a reform of the health insurance system was implemented, the advice of the Dekker committee can - as we saw in Chapter 3 - be regarded as the start of the implementation of market principles in the Dutch health care system.598

Overview of the Chapter

The theme of the establishment of specialised services for dying patients and the way in which they took inspiration from English hospices is continued in this chapter. Sections 5.2 and 5.3 deal with voluntary and professional home care services. Moreover, two different models of independent, intramural palliative care services, of which one was unique to the Netherlands, emerged from the late 1980s. These developments are discussed in Section 5.4. This section is followed by a description of the units for palliative care that were established within existing care homes, nursing homes and hospitals. During this period, policymakers still did not actively promote the establishment of hospices, but some other schemes were supported and palliative care started to figure more prominently on the policy agenda. The considerations leading to these choices are explored in Section 5.6. The views of the pioneers of these palliative care organisations in the Netherlands on euthanasia are presented in Section 5.7.

595 Hellema, 2012. 596 Companje, 2008b, pp.585 & 687-688; Kerkhoff & Dols, 2008, p.760; Van der Reijden, 1997. 597 Companje, 2008b, p.588. 598 Dols & Kerkhoff, 2008, p.871; Kappelhof, 1990, pp.34-36.

147

5.2 Establishing and Coordinating Voluntary Palliative Home Care Teams

Voluntary Palliative Home Care Teams

Although some voluntary home care services had been established earlier, voluntary home care teams caring specifically for terminally ill patients developed in the Netherlands during the 1980s. These voluntary palliative home care services provided support for those dying at home and their relatives. The people volunteering with these organisations would not provide nursing care or replace professional care givers. Their tasks were similar to those that informal carers would normally carry out. Their involvement was expected to last up to three months, but in practice this period was often much shorter.599 The first voluntary palliative home care service was named Leendert Vriel and started its work in Glanerbrug, a village with circa 10.000 inhabitants between Enschede and the German border, in 1982. This foundation was established by Els Koldewijn, a nurse by training and the widow of Fons van Lier, who had become known under the fictitious name Leendert Vriel thanks to a series of articles in the a national newspaper on his life with incurable Hodgkin’s lymphoma.600 She had cared for her husband at home for the five years he suffered from this disease and considered the support from friends and family, especially from those who stayed with Fons during the night to allow her to sleep during the final stages of his life, invaluable. To enable other people to die at home as well, she established a volunteer team for palliative home care.601 During the period of the establishment of Leendert Vriel, separate, but comparable initiatives emerged in Amsterdam (see Section 4.3) and Ermelo.602 These were soon to be followed by the start of more organisations for voluntary palliative home care. These teams were often founded by citizens who had experienced the loss of a relative or close friend and had been involved in the care of this person. They drew their inspiration from various sources. For instance, Els Koldewijn visited St. Christopher’s Hospice,603 a 1978 documentary about Stichting Voorbij de Laatste Stad inspired the

599 Besteman, Meeuwenoord, Leusink & Brueren, 1989. 600 Sinner, 1976. 601 Aarnoudse, 2014; Haverkate, 1991. 602 "Thuiszorg voor ten dode opgeschreven mensen 'haalbaar'“, 1986. 603 In an interview, however, Els Koldewijn explained that this visit did not impact directly on the organisation of Leendert Vriel, because her major goal was to enable people to die at home. The decision to work with volunteers was made

148 group in Oegstgeest, and the people who established the voluntary palliative home care team in Arnhem in 1983 had consulted Leendert Vriel.604 The popularity of these organisations grew rapidly during the late 1980s. The number of volunteers, organisations, requests for help, and hours of care given all nearly tripled between 1987 and 1991. In 1991, over 1,100 volunteers provided more than 50,000 hours of support.605 This growth continued throughout the 1990s and by the end of this decade around 90 percent of the Dutch population had access to such a service in their region.606 During the years that followed, the growth of the number of voluntary palliative home care organisations halted, but the number of patients cared for continued to grow. The most recent data available show that 135 of these organisations provided support for over 4,000 patients at their homes in 2015.607

Coordinating Voluntary Palliative Home Care

The Stichting Landelijke Samenwerking Terminale Zorg608 (SLSTZ) was established in 1984. This organisation resulted from a meeting for organisations interested in palliative care organised by nursing home Antonius IJsselmonde in 1981.609 A larger scale workshop on terminal care was organised in Utrecht in May 1982. This workshop

deliberately, because the people involved in establishing Leendert Vriel wanted their care to be complementary to the care already provided by informal caregivers rather than taking over from them (Hoffmann, 2005, pp.33-34). 604 Aarnoudse, 2014; De Wilde, 2014; Haverkate, 1991; Janssen, 1987a. 605 Van der Veen, 1992. 606 Aarnoudse, 1999; Kronenberg, Van Rooij & Bart, 2000; "Steeds meer terminale thuiszorg”, 2001; "Vraag naar hulp voor stervenden groeit onstuimig”, 1998; "Vraag naar vrijwilligers voor terminale patiënten groeit sterk”, 1995. This development had been stimulated by the Landelijk Steunpunt Vrijwilligers Terminale Zorg (National Centre for Voluntary Terminal Care) (see following subsection) in the regions, especially the southern region of Limburg, where voluntary initiatives had been sparse (Hamans, 1991). 607 DirectResearch, 2016, p.5. The numbers in this paragraph represent the activities by the members of the Vrijwilligers Palliatieve Terminale Zorg Nederland (Volunteers Palliative Terminal Care the Netherlands) (VPTZ). Additionally, circa 40 of the 130 local branches of the Nederlandse Patiënten Vereniging (Dutch Patient Association) - a general patient association of an orthodox Christian persuasion - offered voluntary palliative home care (Associatie van High Care Hospices, NPV & VPTZ, 2009). 608 Foundation National Cooperation Terminal Care. 609 The other attendees were: St. Antonius Ziekenhuis (Utrecht), St. Hippolytus Ziekenhuis (Delft), Stichting Leendert Vriel, Stichting Terminale Thuiszorg Amsterdam, and the Werkgroep West Brabant (Etten-Leur).

149 was attended by circa 30 representatives from various hospitals, care homes, nursing homes, and home care services that were actively engaged in improving terminal care. During the meeting, they shared their experiences and considered the further improvement of terminal care. The participants considered the improvement of terminal care within all branches of the health care sector essential. Thus, these people considered the establishment of separate institutions - like the English hospices and allied services - to be neither desirable nor necessary to improve the care for the dying.610 The SLSTZ aimed to foster cooperation between organisations that offered terminal care, to represent these organisations at a national level, and to encourage the integration of terminal care in health care. Enabling patients to die at the place of their choice, which would more frequently be at home than common these days, was a tenet of this organisation.611 Membership was open to intramural as well as extramural care providers, but it turned out that most organisations that joined the SLSTZ focused on palliative home care and were run by volunteers.612 The establishment of the SLSTZ increased the visibility of voluntary palliative home care in the policymaking arena. For instance, the SLSTZ commissioned a research project to gain insight into the functioning of voluntary palliative home care teams.613 This investigation showed that volunteers considered their work valuable and that a substantial number of people could be interested to take up this voluntary work. The authors of the report argued that monies to coordinate the work of the volunteers had to become available to guarantee the continuity of care. In practice, this implied that a coordinator had to be on call 24 hours a day, seven days a week. As this was perceived to be a commitment that could not be expected from volunteers, the people involved in these organisations advocated that public funding had to be made available for this task.614 During a parliamentary debate in December 1990, Secretary of State, H.J. Simons, remarked that he had been introduced to the work of voluntary palliative home care teams, which he commended for their high levels of dedication, reliability, and the personal touch they contributed to the care.615 This appreciation of the voluntary

610 "Landelijke werkgroep terminale zorg opgericht”, 1982. 611 "Luister naar wens stervende”, 1982; "Werkgroep terminale zorg: Rustig thuis sterven moet mogelijk zijn”, 1982. 612 Aarnoudse, 1999, p.19; André de la Porte, 1989. 613 Besteman, Meeuwenoord, Leusink & Brueren, 1989. 614 André de la Porte, 1989, p.188; Koster, 1989a; "Steeds meer mensen willen thuis sterven”, 1989. 615 Handelingen II 1990/91, 33, p.1932.

150 palliative home care teams resulted in a governmental subsidy being awarded.616 From 1991, fl 1.5 million a year was made available to invest in voluntary palliative home care. This money was spent on the Landelijk Steunpunt Vrijwilligers Terminale Zorg617 and a project by the Nederlands Instituut voor Zorg en Welzijn618 (NIZW) to improve the continuity and quality of palliative home care by embedding the role of voluntary palliative home care within the health care system.619 The national centre for the support of volunteers working in palliative home care became operational in January 1991. The main activities of this organisation were the provision of information, development of voluntary care in the regions and knowledge diffusion.620 In addition to these initiatives at a national level, public money was made available specifically for the local coordination of voluntary palliative home care teams from the mid 1990s. This followed on the outcomes of the project carried out by the NIZW. In the concluding report, this organisation called for more extensive support of voluntary palliative home care. At that time, around one out of three of the teams had a paid coordinator. Almost all 67 organisations included in the survey claimed that funding their activities was problematic and said they were concerned about the future sustainability of their work.621 Also the lobbying of the new Minister of Health, E. Borst, who took office after the 1994 election, played a role in this development. At that time, C. van Winzum chaired one of the committees that wrote advisory reports to inform Borst’s future policy decisions. He had known this Minister already from the time they had both been involved in the GR. Later he became the chair of Vrijwilligers Hospicezorg Nederland622 (VHN), which succeeded the SLSTZ in 1991. When he had a meeting with Minister Borst to discuss the advisory report, she invited him to mention other topics that he thought required attention. During an interview Van Winzum claimed that he had asked for money for voluntary palliative care. He thought that a

This encounter likely happened during a meeting at WVC with people from the NHB and SLSTZ, which followed from the Minister opening the first bijna-thuishuis (Sluis, 2003). 616 Handelingen II 1990/91, 33, p.1932. 617 National Centre for Voluntary Terminal Care. 618 Dutch Institute for Care and Wellbeing. 619 Kruithof & Govaart, 1994; Kruithof & Visser, 1994; Van der Veen, 1994; Van Swaay, 1994b; Van Swaay, 1994c; Van Swaay, 1994a; Van Swaay & De Boer, 1994; Kamerstukken II 1990/91, 22025, nr.1, p.23; Kamerstukken II 1991/92, 20383, nr.16, p.3. 620 Kamerstukken II 1990/91, 21814, nr.2, pp.38-39; Kamerstukken II 1991/92, 22311, nr.2, p.151. 621 "Financieel jaarverslag 1995 STSB”, 1996; Van der Veen, 1992. 622 Volunteers Hospice Care the Netherlands.

151 factor which explained why the Minister complied with his request was that her husband had died of cancer recently.623 MPs representing the Liberal, Labour as well as Christian Democratic parties took the initiative to speed up the implementation of this measure by a year by reallocating fl 1 million from prevention to the coordination of voluntary palliative home care by proposing an amendment to the health care budget in Parliament. The MP who defended this amendment in Parliament, stressed that it had to be possible, because ‘we all consider the coordination of terminal home care to be important’.624 These funds were allocated using the Subsidieregeling Coördinatie Vrijwillige Thuiszorg en Mantelzorg625 (CVTM-regeling), which was a subsidy instrument of the AWBZ for the support of various forms of voluntary home care. Expenses eligible for reimbursement under this scheme included salary costs of a coordinator, travel costs of volunteers, and training costs.626 Several additional factors can be identified that contributed to the quick establishment of voluntary palliative home care as an initiative worthy of public support. Firstly, voluntary work in the health and social care sector became a topic that attracted explicit attention from the mid 1980s. Demographic and social changes, such as early retirement and an increasing life expectancy, had resulted in the availability of people who could potentially do this work.627 In 1985, the ZFR published a report in which it recommended the introduction of financial support to fund expenses for, for instance, the coordination of voluntary home care.628 Moreover, voluntary care was an attractive option politically, because the recipients of voluntary care as well as the volunteers were generally positive about the experience and it offered an opportunity to contain the growing costs of health care.629 Voluntary palliative home care teams did also fit well within the general policy direction to encourage the extramuralisation of care. Additionally, the ideological preference of the CDA to hold citizens responsible for their own and each others’ wellbeing contributed to the appeal of volunteer work in health care.630

623 "Het gaat hier om de kwaliteit van sterven”, 2002. 624 Handelingen II 1994/95, 33, p.2244; Kamerstukken II 1994/95, 23900 XVI, nr.34; Kamerstukken II 1994/95, 23900 XVI, nr.45. 625 Regulation Coordination Voluntary Home Care and Family Care Givers. 626 Van Reuler, 2007. 627 Bruning, 1992. 628 Ziekenfondsraad, 1985. 629 Bruning, 1992; Kamerstukken II 1989/90, 21455, nr.4; Kamerstukken II 1989/90, 21545, nr.2. 630 Nationale Commissie Chronisch Zieken, 1993; Van Londen, 1989.

152

Secondly, the voluntary palliative home care teams - as initiatives for terminal care in general - had a goodwill factor that made it hard to oppose them as was illustrated above by the argument made by the MP to justify the reallocation of budget to voluntary palliative home care. Moreover, their needs in terms of the funding required - in the range of a couple of million guilders - were modest in comparison to the total budget for health care.631 This perception was reinforced as the people running these organisations advocated some public financial support, but did reject coverage of all expenses from public sources. The main arguments for this view were that high percentages of public funding would affect the relationship between the voluntary palliative home care teams and their local communities and could result in a loss of independence and the ethos of voluntary organisations.632 More than 80 percent of the costs of these organisations were covered by subsidies from VWS and local authorities in 2015, with VWS contributions accounting for around 90% of this income.633 Therefore, it can be concluded that voluntary palliative home care teams succeeded in acquiring a relatively secure funding base to cover the costs of the coordination of their care without completely relying on public funding.

5.3 Extending Professional Home Care Services for the Dying634

The Changing Field of Home Care

Initially, home care associations had been funded through membership fees and donations. After the Second World War, however, they increasingly received

631 Boot & Knapen, 1983. 632 André de la Porte, 1989, p.188. 633 DirectResearch, 2016, p.37. 634 Most of the developments described in this section only applied to patients insured under the ZFW ("Financiering thuiszorg is onlogisch”, 1989). For people covered by a private standard package insurance (see Chapter 3), the government decided to include this care in their package from 1990 ("Verzekering vergoedt tot maximaal zestig dagen hulp aan huis”, 1989). Private insurers often applied ZFR guidance to the other people they insured as well, but their reimbursements for intensive home care were sometimes lower than provided by the sickness funds (Dingemans, Schrijvers, Brinkers & Smits, 1994). From 1998, this provision was covered by the AWBZ, which meant that all citizens had equal access ("Regeling voor terminale zorg”, 1997).

153 contributions from the national government, local authorities and sickness funds. When the AWBZ was drafted, the home care associations expressed the wish to have the care they offered covered under this law. However, due to a combination of issues related to negotiating the balance between state control and independence of the home care associations and a fear about further expanding costs of the AWBZ, this request was not granted. Initially, the variety of views on this issue created a situation in which no further actions were taken. This changed when E. Veder-Smit became Secretary of State for health in the first cabinet Van Agt in 1977. Already during her time as an MP she had advocated inclusion of home care in the AWBZ. As Secretary of State she managed to convince the members of government and the other bodies involved to support the change. Among the major arguments used was the idea that this extramural provision could support long-term intramural nursing care - of which there was a shortage at the time - and would reduce the total costs. As a result, the care provided by the home care associations was included in the AWBZ from 1 January 1980.635 One of the AWBZ criteria for home care associations stipulated that these organisations were required to serve sufficiently large catchment areas.636 This resulted in the regionalisation of home nursing. The number of associations, for example, dropped from around 500 in 1980 to circa 75 in 1992, and regional monopolies emerged. This situation changed with the establishment of for-profit home care organisations that provided intensive home care. This care was funded through payments by patients, sickness funds, and private insurers. From 1994, the government made the rules for providers of home care to be admitted to the AWBZ home care market more flexible. This resulted in a more competitive market in which the home care associations lost their monopolies.637 These changes provided the context in which initiatives that aimed to improve professional palliative home care emerged during the 1980s.

635 Companje, 2014, pp.137-139; Kerkhoff & Dols, 2008, pp.747-757; Van der Hoeven, 1983, pp.420-421. 636 Esmeijer & Geerts, 1992, p.25. 637 Boot, 2013; Breedveld, 2003, pp.20-35; Knoop & Schuiringa, 1998, pp.68-69.

154

ZFR Advice

The refusal of the ZFR to fund the project proposed by Stichting Terminale Zorg Amsterdam en Omgeving (see Section 4.3) attracted attention from MPs. Consequentially, Secretary of State Hendriks was questioned about the possibilities of palliative care at home. Arguing that people increasingly wished to die at home, an MP asked the Secretary of State to give his opinion on the role of home care services and the relationship between generalist and specialist work in this field. Her party, the VVD, advocated, among other things, a generalist approach, including the option of evening and night care.638 The Secretary of State was sympathetic to this request. He agreed with the desirability of evening and night care and was pleased to refer to a ZFR committee that had been appointed to study this problem.639 In 1985, this ZFR Committee on terminal care concluded its work and published its recommendations.640 Among the main problems identified by the ZFR committee were the lack of availability of home care services, the suboptimal coordination and cooperation among primary care providers and between primary and secondary care providers, and the ill defined position of volunteers within primary care. The ZFR thought that these bottlenecks could be resolved and argued for offering intensive, integrated care for terminally ill patients. The report also recommended the government to make additional financial resources available. It was suggested that such care ought to have a maximum duration of around two months. Additionally, nursing homes were assigned two functions with regard to palliative home care in this advice. Firstly, they would serve as back-up facilities to provide quick admissions for patients who could no longer be cared for at home. Secondly, the nursing home physician could advise primary care givers on pain management.641 Tenets underlying the ZFR advice were that new institutions for palliative care were not to be established and that the primary care providers could and should deliver palliative home care. Moreover, people should be able to die at home if they wished.642 This idea had been stressed in the first study on this topic, which was commissioned by Stichting Voorbij de Laatste Stad and was also supported within politics and by

638 Handelingen UCV 1982/83, 20, p.13. 639 Handelingen UCV 1982/83, 20, pp.16-17. 640 Kamerstukken II 1983/84, 15426, nr.35, p.7. 641 Ziekenfondsraad, 1985. 642 "Knelpunten bij sterven thuis verder opheffen”, 1985; "Thuis sterven moet beter geregeld”, 1985; Ziekenfondsraad, 1985; "Ziekenfondsraad: Extra bedden verpleeghuizen bespoedigen”, 1985.

155 advisory bodies.643 The plans presented in the report about home nursing by the ZFR were well received in Parliament and by WVC.644 As a result, subsidies were made available for pilot projects on so-called ‘intensive home care’ in the regions of three sickness funds in 1987.645 These pilot studies were conducted in the cities of Amsterdam and Groningen, and the rural region West-Brabant/ Zeeuws-Vlaanderen. These pilot projects made financial resources available for patients who could, given the severity of their situation, be admitted to a nursing home or hospital, but preferred to stay at home. The average maximum of fl 200 a day that was made available for these patients would cover the costs of additional nursing care at home and the costs of equipment for an expected maximum duration of three months.646

Grass Roots Projects

The projects referred to in the previous paragraphs were all initiated from a top-down perspective. However, during the 1980s, two bottom up initiatives for terminally ill patients who were staying at home started as well. Although the expenses for these projects were not defrayed to the ZFR, the ZFR decided to include these initiatives in the research they had commissioned to describe, analyse and evaluate their own pilot projects given their relevance for the issue of intensive home care.647 One of the projects took place in the regions Haarlem, Zuid-West Kennemerland and IJmond and was initiated by four local home care associations in 1984. The main aim of this project was to provide night nursing care for patients with an expected remaining life expectancy of up to 14 days. This constituted an extension of the care already provided by the home care associations.648 The project was continued with

643 Nationale Raad voor de Volksgezondheid, 1985; Slot & Deelstra, 1986; Van Gennip-Horsten & Schnabel, 1980; Aanhangsel Handelingen II 1983/84, nr.993; Handelingen UCV 1982/83, 20. 644 "Overheid wil thuiszorg voor stervende patiënt”, 1985; "Terminale thuiszorg bij overheidsbeleid prioriteit”, 1985; Handelingen II 1984/85, 27, p.1831; Kamerstukken II 1984/85, 18331, nr.7. 645 Ziekenfondsraad, 1989, p.5. 646 For individual patients, the expected costs at the moment of the admission to the programme were allowed to be no more than fl 350 a day. Bruning, 1989; Mensink & Tunissen, 1988; Miltenburg & Ramakers, 1988; Ziekenfondsraad, 1989. 647 Ramakers & Bruning, 1988. 648 Provinciale Kruisvereniging Noord-Holland, Kruisvereniging Haarlem, Vereniging

156 financial support of the umbrella organisations for home care associations649 and in 1987 and 1988 a charity affiliated to one of the local sickness funds provided financial resources. After the project, night care was integrated within the existing structures of the home care associations involved.650 The other project took place in Rotterdam and emerged from the previous initiatives on terminal care in nursing home Antonius IJsselmonde (see Section 4.3).651 The experiences during this earlier project in combination with the ZFR’s position that establishing separate intramural institutions for terminal care resulted in the decision to provide palliative home care in three neighbourhoods in the south of Rotterdam from June 1986.652 Terminally ill patients who wanted to die at home were supported by the care providers who usually provided care in the home situation, like their GP and home care nurses. In addition, support was provided by a newly established volunteer team and Antonius IJsselmonde kept beds available for patients requiring urgent admission. Stichting Voorbij de Laatste Stad covered the costs, which were mostly related to the wages of the part-time project coordinator, volunteer coordinator and a secretary, from private donations and from subsidies it had received from WVC and the local authority of Rotterdam.653 Based on evaluations of the project, it was decided to continue the provision of palliative home care in these neighbourhoods, and funding the service was transferred to the health care insurers.654

Maatschappelijke Gezondheidszorg van de Kruisverenigingen in de IJmond, Stichting Samenwerkende Kruisverenigingen Zuid-West Kennemerland & Instituut Sociale Geneeskunde Universiteit Amsterdam, 1986; Provinciale Kruisvereniging Noord-Holland, Nationale Kruisvereniging Bunnik & Instituut Sociale Geneeskunde Universiteit Amsterdam, 1987. 649 Nationale Kruisvereniging. 650 Provinciale Kruisvereniging Noord-Holland, Nationale Kruisvereniging Bunnik & Instituut Sociale Geneeskunde Universiteit Amsterdam, 1987. 651 Bruning, 1990, p.1. 652 These neighbourhoods were IJsselmonde, Lombardijen and Beverwaard. Collectively they had circa 60.000 inhabitants, and around 650 persons died annually (Bruning, 1989, p.30; Bruning, 1990, p.v). 653 Bruning, 1989; Bruning, 1990; Bruning, 1992; "Thuis sterven: Begeleiding als experiment in drie wijken”, 1986. 654 Baar, 1998b, p.6; Bruning, 1990; "Samenwerkingsverband Terminale Thuiszorg zoekt vrijwilligers”, 1989.

157

Beyond Pilot Projects

The evaluation of the intensive home care pilot projects showed, among other things, that around half of the patients who participated suffered from cancer. Around 80 percent of these patients received this care until their deaths.655 The average costs per day of intensive home care were higher than envisaged at around fl 400.656 However, the majority of professional care givers as well as informal carers involved expressed positive opinions about the care provided.657 Informal carers stressed that they felt that it would have been impossible for their relatives to die at home without this care. Only 6 percent of the informal carers stated that they would not opt for intensive home care if they were to make such a decision again.658 Based on these outcomes, the ZFR recommended the national implementation of this form of care from 1990. The estimated costs of this provision were fl 100 million a year.659 Secretary of State Simons adopted the ZFR’s recommendations.660 With regard to the financial resources, the Secretary of State allocated an additional fl 22 million to intensive home care.661 The Secretary of State mentioned that he would look into the possibilities of increasing the financial resources during the following years.662 From 1993, some growth of the budget for intensive home care was allowed, and fl 56 million was available in 1995.663 Although this equalled just over 50 percent of the fl 100 million needed annually according to the ZFR, we can still see it as an important indicator of the commitment of the government to intensive home care, because the whole home care sector was only allowed a volume growth of circa fl 7 million

655 Other common diagnoses of patients who received intensive home care were CVA, psycho-geriatric problems, and heart diseases (Miltenburg, 1992, pp.26- 31). 656 Kraaipoel, 1992b, p.50; Miltenburg, 1992. 657 Miltenburg, 1992. 658 Welling & Miltenburg, 1989. 659 Ziekenfondsraad, 1989. 660 In addition to the projects described above, some sickness funds had already voluntarily started reimbursing patients for the costs of such care, mostly from their supplementary insurance schemes. This care was in most cases not delivered by the home care associations, but by new entrants to the markets (Bonjer, 1987; Herbergs, 1988; Klaver, 1988; Paumen, 1988; "Ziekenfondsen vergoeden nachthulp terminale patiënt”, 1987). 661 In combination with the fl 18 million that had already been available for the pilot regions, this meant that a total of fl 40 million was available for intensive home care in 1990 (Kamerstukken II 1989/90, 21300 XVI, nr.31). 662 Kamerstukken II 1989/90, 21300 XVI, nr.31. 663 Kamerstukken II 1992/93, 22800 XVI, nr.80, p.4; Kamerstukken II 1993/94, 23407, nr.2, p.266.; Kamerstukken II 1994/95, 23904, nr.2, p.95.

158 annually.664

5.4 Establishing Independent Intramural Services for Palliative Care

Two Types of Independent Intramural Services for Palliative Care

In this section, I give an overview of the background and development of initiatives to establish specialised, intramural organisations for palliative care in the Netherlands. These grass roots initiatives were all inspired by the developments in England, but the people involved decided to transfer the ‘English model’ to the Dutch situation in various ways. As a result, two main types of intramural services emerged. In addition to hospices that resembled the English hospices relatively closely and had their own medical staff, so-called bijna-thuis-huizen665 that relied heavily on care provided by volunteers and relied on primary care practitioners to provide for the medical needs of the people admitted emerged. The former were also called high care hospices, whereas the latter were sometimes referred to as low care hospices.666 Although this distinction may seem clear conceptually, this has not always been the case in practice. The terms were - especially during the early stages of the development of these institutions - used almost interchangeably. Moreover, these concepts are of an ideal typical nature and individual institutions may exhibit characteristics of both types. For instance, a high care hospice may employ nurses, but involves the GP of the patient in the care for this person rather than employing its own physician.667

Bijna-Thuis-Huizen

During the 1980s, volunteers established a form of intramural palliative care that was unique to the Netherlands. In normal houses, volunteers provided care for only a few

664 Kamerstukken II 1992/93, 22800 XVI, nr.80, p.4. 665 Best translated as almost-at-home-houses. 666 In the remainder of this thesis, I will use the terms hospice and high care hospice interchangeably when discussing the situation in the Netherlands. 667 Bruntink, 2003; Helms, 1992.

159 people at a time. The average size of a bijna-thuis-huis was 3.7 beds, whereas the maximum capacity generally did not exceed five beds.668 The people setting up these places tried to emulate the situation of the patient at home as closely as possible. In bijna-thuis-huizen, medical care was provided by GPs and existing home care services - as they would have done if the patients had still been in their own houses, while all other duties were taken care of by volunteers.669 As a consequence, the costs of medical care in bijna-thuis-huizen were covered by the sickness funds, private insurers or AWBZ. To cover the other costs involved in running a bijna-thuis-huis charitable fund-raising was considered of prime importance. This would establish and maintain a connection to the local community and guaranteed the freedom to run the place as the volunteers considered desirable.670 The first bijna-thuis-huis was officially opened by the minister of WVC in Nieuwkoop in 1989. The opening of a second bijna-thuis-huis followed during the same year in Haarlem.671 These initiatives were taken by people who had been involved in the workshops Elisabeth Kübler-Ross, the American-Swiss psychiatrist who pioneered ‘open communication’ with the dying, had led in the Netherlands.672 The Foundation Dr. Elisabeth Kübler-Ross Nederland (EKR-NL), which these people established in 1984, decided to make terminal care a focal point of attention for its work. A working group on terminal care was formed to take this task forward. Despite participation in the SLSTZ and a visit to several English hospices, including St. Christopher’s Hospice, this working group developed a model for terminal care that differed significantly from the ideas common in the SLSTZ, which focused mostly on voluntary palliative home care, and in the English hospices. The main decision was - in line with the body of thought developed by EKR-NL - to emphasise volunteer-led care rather than the relatively professionally and medically oriented care provided in the English hospices.673 As P. Sluis, a GP by training and one of the people leading EKR-NL once phrased it:

668 Mistiaen, Van Ruth & Francke, 2006. 669 Bruntink, 2003; Ruijten & De Gouw, 2002, pp.18-19. 670 Sluis, 1989a, p.43. 671 Groeneveld, 1994; "Minister opent in Nieuwkoop tehuis voor stervenden”, 1989. 672 Kübler Ross wrote a large oeuvre on this topic, but is most famous for her ground-breaking book On Death and Dying which was first published in 1969 (Kübler-Ross, 1969). 673 Koster, 1989b. Developing voluntary support services for the dying was a response to Kübler- Ross’ ideas that occurred more often, but in other countries this had primarily resulted in palliative home care teams (Van Reuler, 2006).

160

The argument [of the board of EKR-NL] was that volunteers could provide care without any direct interest or career goal. They did it, because they wanted to be available, because they understood the importance of experiencing the last phases of life in one’s own way. For this type of support you do not need professionals. In the last phase of life it is not about complex medicine you need to have studied. It is about making room for what needs room, about giving love and real commitment. So, without the distance advocated by professionals.674

Another reason for rejecting the ‘English model’ was that establishing a hospice of the size common in England was not feasible. A radio programme which mentioned that authorities allowed the provision of care for up to six people in a normal home without any further regulation being imposed, inspired the working group to reshape its plans and opt for smaller scale facilities that would provide care for terminally ill patients who could no longer be cared for in their own homes.675 In contrast to the SLSTZ, which left the primacy with the local volunteer groups and did not advocate a general model, the working group on terminal care of EKR-NL developed a vision that included the establishment of a nation-wide network of voluntary palliative home care teams and bijna-thuis-huizen.676 These bijna-thuis- huizen would only provide care for patients who could no longer stay at their own homes. Initially, one bijna-thuis-huis per 10,000 inhabitants was expected to be required.677 To further this aim a national umbrella organisation, the Nederlandse Hospice Beweging678 (NHB), was established in 1986 - even before the first bijna- thuis-huis became operational. The NHB actively tried to liaise with relevant, external parties, such as health insurers and policymakers.679 Sluis, evaluating the development of the bijna-thuis-huizen in the Netherlands in 2003, concluded that the circa 40 bijna-thuis-huizen that were available at that time did indeed provide the national coverage the NHB had aimed for.680 The growth of these organisations continued during the first decade of the twenty-first century. It has been reported that the number of bijna-thuis-huizen rose to 87 in 2015.681

674 Sluis, 2003, p.103. 675 Sluis, 1997; Sluis, 2003. 676 Sluis, 1990, p.34. 677 Sluis, 1989b. 678 Dutch Hospice Movement. 679 Sluis, 2001; Sluis, 2003. 680 Sluis, 2003, p.96. However, he did not address the significant difference with the at least 1,500 bijna-thuis-huizen that would have been required if the original plan of one bijna-thuis-huis per 10,000 inhabitants had been implemented. 681 DirectResearch, 2016.

161

High Care Hospices

In addition to the bijna-thuis-huizen that were discussed in the previous subsection, hospices that were more akin to the professional model of palliative care developed in English hospices emerged in the Netherlands from 1991. In contrast to the bijna-thuis- huizen, medical care was provided by nurses and medical doctors were appointed by the hospice. However, these institutions did not become as ubiquitous as in England. In 2012, 36 high care hospices were found to exist, but at that time most of these organisations had been established during the past five to ten years.682 With an average size of 6.4 beds per hospice these institutions were substantially smaller than their English counterparts, but larger than other forms of intramural specialist palliative care in the Netherlands.683 During the first half of the 1990s, the first three high care hospices opened in the Netherlands: Johannes Hospitium (Vleuten, 1991), Kuria (Amsterdam, 1992), and Hospice Rozenheuvel (Rozendaal, 1994).684 The groups of people establishing these organisations operated mostly independently of each other. However, what their organisations had in common was that they were all established with the help of religious organisations and were funded from private sources, because public support was not made available.685 For instance, Stichting Elckerlijck,686 an organisation involved in establishing Hospice Rozenheuvel, had submitted a request to receive a subsidy from WVC to fund the costs of opening a hospice, but funding was not granted as the establishment of new services was deemed undesirable by the government.687 Although some of the people involved in founding these hospices had visited the bijna- thuis-huis in Nieuwkoop, they were primarily influenced by the English hospices.688 Of the three hospices that were founded in the Netherlands during the early 1990s,

682 Middelburg-Hebly, Galesloot, Van Trigt & Jansen-Segers, 2014, p.32. 683 The minimum size reported was 3 beds and the maximum size mentioned 10 beds (Mistiaen, Van Ruth & Francke, 2006). 684 Van Tol-Verhagen, Zuurmond & Steijns, 1997; Zeylmans van Emmichoven, 1998, pp.50-52. Exact numbers on the growth of hospices in the Netherlands over time are not known (De Vries, 2016b). However, a survey of the facilities for palliative care in the Netherlands was conducted in 1997. This study identified six hospices (Francke, Persoon, Temmink & Kerkstra, 1997; Francke & Kerkstra, 2000). 685 Kennedy, 2009, p.105; "Voorbereidingen 'bijna-thuis-huis' in Amsterdam zijn bijna afgerond”, 1991. 686 Foundation Elckerlijck. 687 Kamerstukken II 1990/91, 21800 XVI, nr.14, p.9; Kamerstukken II 1990/91, 21800 XVI, nr.28. 688 Sluis, 1997; Zylicz, 1993.

162

Kuria and Hospice Rozenheuvel attracted most attention and fulfilled the function of exemplars in public and political debates in the Netherlands.689 Hospice Rozenheuvel near Arnhem had resulted from collaboration between Stichting Elckerlijck, which since its establishment in 1986 tried to raise awareness for death and dying in the Netherlands and aimed to establish a hospice, and the local Salvation Army.690 Hospice Rozenheuvel achieved this position as exemplar, because it considered research and education part of its duties, which resulted in various publications in national medical journals.691 Moreover, Hospice Rozenheuvel, with eight beds, was the largest of the three organisations.692 The link between Hospice Rozenheuvel and the English hospices, is exemplified in the person of Z. Zylicz, who was the first medical director of Hospice Rozenheuvel. He had visited St. Christopher’s Hospice as a Polish medical student during the 1970s.693 After his move to the Netherlands, he became involved in Elckerlijck.694 Additionally, the chair of Elckerlijck went to England for a study visit during which he visited several hospices, including St. Christopher’s Hospice.695 If we look at the plans for a hospice published by Elckerlijck in 1989, we see that they viewed the contemporary situation at St. Christopher’s Hospice and other English hospices as the ideal for their hospice, with services such as a day care unit and home care services.696 However, only parts of this blue print were implemented, because of the limited availability of financial resources as well as the need to fit within the Dutch health care system. No pressing need was, for example, felt to establish a home care service, given the already existing general home care teams and voluntary palliative home care teams in the Netherlands. It is plausible that the availability of these and other services contributed to the

689 The Johannes Hospitium in Vleuten was hardly mentioned in such debates. A comprehensive explanation for this finding cannot be given, but the fact that members of the Johanniter Orde (order of knights of St. John), who generally tried to do their charitable works out of the limelight, established this hospice might have played a role ("Hulp van adel”, 2009). 690 Desmet, Zylicz & Van Hellenberg Hubar, 1991; Enkelaar, 1999; Petzhold, Van Hellenberg Hubar & Van Hellenberg Hubar, 1990; Van Hellenberg Hubar, 1989. 691 Desmet, Zylicz & Van Hellenberg Hubar, 1991, pp.17-22; Reith, 1999; Zylicz, 1993; Zylicz, Van den Borne & Bolenius, 1997. 692 Zylicz, 1993. The other hospices had three to six beds. 693 Enkelaar, 1999; Zylicz, 2006. 694 Desmet, Zylicz & Van Hellenberg Hubar, 1991, pp.17-22; Zylicz, Zijlstra & Van Hellenberg Hubar, 1990. 695 Van Hellenberg Hubar, 1989. 696 For example: Desmet, Zylicz & Van Hellenberg Hubar, 1991, pp.9-16; Van de Walle & Van Hellenberg Hubar, 1989; Van Hellenberg Hubar, 1989.

163 admission of patients with relatively complex care demands in Hospice Rozenheuvel.697 As a consequence, approximately 90 percent of the admitted patients died in the hospice during the period 2004-2009.698 Whereas the function of the English hospices had become more and more that of places to arrange pain medication with the aim of discharging the patients back home - often with support of the home care team of the hospice - we can conclude that the role of the hospice in the Dutch health care system differed from its English equivalents. Although the initiators of the establishment of other high care hospices were acquainted with the English hospices, the practices in these organisations were not always as much a direct source of inspiration as in Hospice Rozenheuvel. Kuria, for example, was established as a cooperative initiative of five churches in Amsterdam. They were motivated to start a hospice because they had already been involved in voluntary care for AIDS patients. These experiences inspired them to extend their care offer to patients who could no longer stay at home.699 Its initial set up was much closer to the bijna-thuis-huizen than to the English hospices as it had five beds available700 and patients had the possibility to continue to be cared for by their own GP.701 However, Kuria was also employing its own medical staff and a pain specialist from a university hospital was available.702

697 Enkelaar, 1999, p.60. 698 Leger des Heils Gelderland, 2006; Leger des Heils Gelderland, 2007; Leger des Heils Gelderland, 2008; Leger des Heils Gelderland, 2009; Leger des Heils Gelderland, 2010. 699 Boersma, 2012; De Bruijne, 2013; Stoffels, 1991; "Voorbede bij start Kuria- huis voor patiënten in stervensfase”, 1991. 700 This choice was motivated by the same legal considerations that had played a role in shaping the set up of the bijna-thuis-huizen (De Bruijne, 2013). Later the number of beds got extended to 10 (Kuria: Kuria in beeld. http://www.kuria.nl/hospice/kuria-in-beeld-fotos. Accessed 1 November 2016). 701 Van Tol-Verhagen, Zuurmond & Steijns, 1997. In some newspaper articles Kuria was even called a bijna-thuis-huis (Helms, 1992). 702 Van Tol-Verhagen, Zuurmond & Steijns, 1997.

164

5.5 Establishing Specialised Services for Palliative Care in Care Homes, Nursing Homes and Hospitals

Introduction

During the 1980s, but especially during the 1990s a tendency can be seen to attempt to establish specialised services for palliative care within the walls of already existing organisations. These services often took the form of a unit or department for palliative care. In this section, the developments in care homes, nursing homes, and hospitals will be addressed.

Establishing Units in Care Homes

During the 1990s, specialised, intramural palliative care started to develop within care homes. The foundation Christelijke Hospices Nederland703 (CHN) was the driving force behind these developments. This organisation was established in 1990 and originally aimed to establish hospices that resembled the English hospices as well as bijna-thuis- huizen. The people involved in the CHN knew of the bijna-thuis-huizen in Nieuwkoop and Haarlem and held a positive judgement on the care provided in these places. Nevertheless, they did not join the NHB, because they thought that founding such houses on explicitly Christian principles was desirable.704 Immediately following the establishment of the NHB doubts had been raised within conservative Protestant circles about the suitability of the care provided by the NHB for committed Christians. The major obstacle was the body of thought developed by Elisabeth Kübler-Ross and her believe in reincarnation.705 Moreover, the CHN wanted to reject euthanasia explicitly, whereas the NHB considered this a matter that had to be left to individual patients.706 The CHN’s original plan was to establish three hospices with 30 to 90 beds and around 30 bijna-thuis-huizen that would each care for a maximum of five patients.707 A difference with the NHB was that the CHN did not aim to provide voluntary palliative

703 Christian Hospices the Netherlands. 704 Beekmans, 1989. 705 Wisse, 1986; Wisse, 1989. 706 Veenhof, 1994. 707 Beekmans, 1989; "Protestantse stichting wil 'bijna-thuis-huizen'“, 1990.

165 home care. However, a discussion of this plan with WVC revealed that the Ministry did not support the establishment of independent intramural facilities for palliative care. As a consequence, funding the plan became problematic and the CHN abandoned its original plan.708 Instead, the CHN decided to aim for a national network of palliative care units in care homes, which they thought most dying people would prefer over nursing homes.709 These hospices had a maximum size of five beds, but more often the establishment of one or two rooms was considered satisfactory.710 The CHN paid for setting up the unit, and recruited and trained volunteers. The care home was responsible for providing care and coordinating the work by volunteers.711 The first three units established by the CHN were based in Almelo, Nijkerk and Oud- Beijerland.712 These places shared that, despite their geographical spread, they were all located in the part of the country which is known in the Netherlands as the ‘bible belt’.713 Also the palliative care units in care homes that followed were often based in this strip of land. At the time of its tenth anniversary, the CHN claimed to have been involved in setting up 40 units for palliative care in care homes. However, a substantial number of these units was no longer operational or had never become operational. The reasons why the units had stopped functioning ranged from a renovation of the care home to a new board of directors no longer supporting the unit. The major cause of failing units, however, was lack of financial resources, as some sickness funds were not willing to pay for the care in the units. Additionally, circa 8 units had become independent of the CHN. As a consequence, the actual number of palliative care units in nursing homes associated with the CHN was 13 in 2000.714 As we will see in Chapter 6, the units in care homes benefited from the governmental stimulation policy for palliative care implemented from 1996. The Monitor Palliatieve Zorg715 reported that 64 of these units with an average number of 2.4 beds per unit

708 "Hospicehuizen”, 1991; Wolvers, 1995; Wolvers, 2000. 709 Although not mentioned explicitly in the sources this subsection draws on, the fact that single bed-sits were the standard in care homes, while at least two people shared a bedroom in a nursing home may explain this assumed preference. 710 Stichting Promise: Christelijke Hospice. https://stichting-promise.nl/pastorale- onderwerpen/christelijke-hospice.htm. Accessed 4 September 2013. 711 Wolvers, 1995; Wolvers, 2000. 712 "Arkemheen in Nijkerk krijgt hospice-afdeling”, 1993; Schmidt, 1994. 713 This area with a high concentration of conservative Protestant Christians stretches from the provinces of Zeeland in the southwest to Overijssel in the northeast. 714 Wolvers, 2000. 715 Palliative Care Monitor.

166 existed in 2006.716 The role of the CHN in these developments, however, diminished over time.717

Units in Nursing Homes

Whereas the developments in the care homes had been driven by a foundation, the establishment of units for terminal care in nursing homes was facilitated by WVC during the early 1990s. Questions by MPs provided the impetus for the Minister to ask the Nederlandse Vereniging voor Verpleeghuiszorg718 (NVVZ) to develop short term terminal care719 within the existing institutions. A pilot project was developed in the nursing home Antonius IJsselmonde, which had previous experience and interest in the improvement of care for the dying (see Chapter 4). This nursing home opened a unit for palliative care with eight single rooms in February 1993.720 This was a clear change of direction compared to the earlier project when the establishment of such a unit had been explicitly rejected. This shift was inspired by the projects conducted during the 1980s, which had shown - contrary to earlier expectations - that a separate ward for people whose death was imminent was desirable.721 The Nationaal Ziekenhuisinstituut722 carried out an evaluation of the unit during its first two years of operation. Although nursing homes had already been regarded as a more suitable place for dying patients during the previous decades, such units were seen to mitigate the negative impact of the large scale of these organisations.723 A protocol was developed to help spread the idea of units for short term terminal care in nursing

716 Mistiaen, Van Ruth & Francke, 2006. 717 The conservative Christian character of the CHN and its strong anti-euthanasia position probably made this organisation an outsider within the palliative care scene that became increasingly closely connected from the late 1990s (Wolvers, 2000). Although I did not identify any formal notifications of its discontinuation during a search in 2016, the CHN did not seem active anymore. It can be imagined that the organisation thought that a rationale for its existence no longer existed once the government started to encourage the establishment of palliative care units in care homes and nursing homes and made financial resources available. 718 Dutch Association for Nursing Home Care. 719 The term short term terminal care was used to distinguish this care from the improvement of the care during the last phases of life of the people living permanently in the nursing home. 720 De Leeuw, 1993. 721 "Eind van het leven vergt extra zorg”, 1985. 722 National Hospital Institute. 723 Schuurmans, 1995; Spreeuwenberg, 1989, p.16.

167 homes in 1995.724 As will be explained in Chapter 6, the government stimulated the establishment of palliative care units in nursing homes and care homes more powerfully from the mid 1990s when establishing such units was preferred over the establishment of independent hospices. From three units in 1997, the number of units for palliative care in nursing homes grew to 72 in 2006.725 Most of these new units were established during the early 2000s: in 1999, just five units for palliative care existed in nursing homes, but around 25 of these units were being established at that time.726 Palliative care units in nursing homes had an average size of 4.5 beds.727

Specialised Services for Palliative Care in Hospitals

In the previous chapter, the palliative care related provisions developed in the St. Hippolytus Ziekenhuis in Delft and in the Antonius Ziekenhuis in Nieuwegein during the 1970s were discussed. These initiatives do not seem to have inspired other hospitals to adopt similar schemes for terminally ill patients. Pain management in a more comprehensive sense, however, attracted a fair deal of attention from the medical profession, politicians and policymakers during the 1980s.728 Although these discussions initially included considerations related to terminally ill cancer patients, the focus of policies on pain management shifted towards chronic pain and sophisticated treatments by pain teams in hospitals. This development can be illustrated by the following examples. Firstly, the Secretary of State decided that

724 Baar, 1998b, p.21; Teunissen & Witteveen, 2005, pp.347-348. 725 Francke, Persoon, Temmink & Kerkstra, 1997; Francke & Kerkstra, 2000; Mistiaen, Van Ruth & Francke, 2006. 726 "Terminale patiënt drukt te zwaar op de begroting”, 1999; Teunissen & Witteveen, 2005, pp.347-348. 727 Francke, Persoon, Temmink & Kerkstra, 1997; Francke & Kerkstra, 2000; Mistiaen, Van Ruth & Francke, 2006. 728 Crul & Van der Linden, 1983; Dorrepaal, 1989; Gezondheidsraad, 1986; Gezondheidsraad, 1991; Handelingen II 1989/90, 14, p.319; Handelingen UCV 1982/83, 20, p.20; Handelingen UCV 1983/84, 77, pp.7 & 9; Handelingen UCV 1986/87, 8; Handelingen UCV 1990/91, 48; Kamerstukken II 1980/81, 15426, nr.24, p.2; Kamerstukken II 1983/84, 15426, nr.35, pp.19-20; Kamerstukken II 1985/86, 15426, nr.38; Kamerstukken II 1990/91, 21800 XVI, nr.37; Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummers 16-19; Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummers 1803-1805.

168 palliative home care and pain management were topics that fell within the remit of the Nationale Commissie Chronisch Zieken729 (NCCZ), which was operational in the period 1991 to 1999. However, at the time of the establishment of the NCCZ it had been decided that cancer and cardiovascular diseases did not have priority for this commission.730 Indeed, the NCCZ only undertook a very limited number of initiatives related to cancer or terminal care.731 Secondly, the government decided to support the establishment of ‘knowledge centres for pain management’ in four university hospitals in 1994. These centres mainly focused on sophisticated pain treatments and the development of treatment protocols.732 This practice exemplified an approach distinct from pain treatments as practised by English hospice doctors. The situation that resulted was characterised as follows by the first medical director of Hospice Rozenheuvel, Z. Zylicz:

Pain management in the Netherlands is very well developed insofar as the clinical and the technological side of development is concerned. Much less developed is the implementation of basic programs of pain control by general practitioners using simple oral drugs.733

Nevertheless, some hospitals actively sought to develop palliative care during the 1990s. The best known initiative involved the Daniel den Hoed Kliniek, the specialist cancer centre of the University Hospital in Rotterdam. From 1992, this organisation was running a supportive care programme. Two nurses were appointed to provide 24 hour support for patients dying at home. Their duties included tasks that were too specialised for the providers of home care, such as connecting or changing pumps for pain medication.734 A unit for palliative care was opened in the hospital in 1995. This unit was to be an academic workplace for the development, application and evaluation of various forms of palliative care. Only a minority of the patients who were admitted to the palliative care unit died there.735 After two years, the unit was embedded in the

729 National Commission on the Chronically Ill. 730 Haas-Berger, 1992; Kraaipoel, 1992a; Kamerstukken II 1993/94, 23407, nr.2, pp.46&136. 731 Van den Bos, Frijling, Koster-Dreese, Schnabel & Spreeuwenberg, 1999. 732 Kamerstukken II 1993/94, 23407, nr.2, p.46&136; Kamerstukken II 1994/95, 23904, nr.2, p.41. 733 Zylicz, 1996, p.138. 734 Poll, 1997. 735 Data over 1996 showed that of the 156 patients who were admitted, 27 percent died at the unit, 66 percent went back home, and 7 percent was transferred to a nursing home or other hospital (Poll, 1997).

169 regular organisational structures of the hospital.736 Other examples of developments during this period were the formation of a palliative team that supported other care givers with questions related to palliative care at the University Hospital in Utrecht and the establishment of a unit for palliative care at the Rivierenland Ziekenhuis in Tiel.737 The unit in Tiel was opened in 1997, but closed in 2003. The care it provided was taken over by a local nursing home that extended its number of beds in its unit for palliative care. The main reason for this transfer was funding related as the nursing home could be reimbursed for this care at a higher rate than the hospital.738 In 2013, a survey was conducted to assess the activities and policies regarding palliative care in hospitals. This study found a range of palliative care related activities taking place in the hospitals.739 Firstly, nearly 40 percent of the hospitals that returned the questionnaire had a consultation service for palliative care that provided advice to medical practitioners in the hospital and in some cases also to caregivers outside the hospital. Another 40 percent responded that they were establishing such a service. Secondly, 19 percent of the respondents had designated beds for palliative care in their hospital. The number of these beds ranged from 1 to 13. Four of the respondents had clustered these beds in a unit for palliative care and one hospice mentioned that these beds were located in a hospice. Thirdly, six hospitals had an outpatient department for palliative care.740 These developments were aided by the inclusion of palliative care in the reimbursement system for hospitals from 2012. In 2015, the survey was repeated. The number of designated beds and units for palliative care turned out to be almost unchanged. However, the number of palliative care teams had grown significantly. In 2015, 77 percent of the hospitals had such a team and all other hospitals were planning to start one. The explanation for this development was the decision by Stichting Oncologische Samenwerking741 to make the availability of a

736 Bruntink, 2003; Sluis, 2004; Van Staa, Van der Zouwe & Visser, 1999. 737 De Graeff, Witteveen, Van Boxtel, Tjia, Vrehen & Blijham, 1997. During a national survey held in 1997 the units in the Daniel den Hoed Kliniek and the Rivierenland Ziekenhuis were the only two specialised units for palliative care in hospitals identified (Francke, Persoon, Temmink & Kerkstra, 1997; Francke & Kerkstra, 2000). 738 See Section 6.2 for the background to this difference in funding. "Weg uit ziekenhuis: Hospice Tiel komt in Vrijthof”, 2003. 739 92 hospitals out of the existing 125 hospitals were asked to complete the survey. The response rate was 62 percent (Dutch Hospital Data, 2013, p.7; Galesloot, Brinkman-Stoppelenburg, Klinkenberg, Van der Heide & Baar, 2013). 740 Galesloot, Brinkman-Stoppelenburg, Klinkenberg, Van der Heide & Baar, 2013. 741 Foundation Oncological Cooperation.

170 palliative care team requirement for hospitals as per January 2017. The survey also found major differences in the ways the hospital teams operated, the knowledge of its staff members and the number of consultations they conducted.742 These findings indicate that despite the scattered and locally confined developments during earlier periods, hospitals have started to develop more extensive specialist palliative care services recently.

5.6 Responses to Developments in Palliative Care by Policymakers, Politicians, and Medical Professionals

Introduction

In 1979, the plan by some of the most vocal advocates of euthanasia to establish a so- called ‘besluithuis’743 in Noordwolde, resulted in an MP questioning Secretary of State Veder-Smit about ‘hospitals for terminally ill patients’. Although the Secretary of State claimed to be in favour of more attention for terminal care, she responded that she felt that she could not support the establishment of these organisations. Although she did not object to ‘hospitals for terminally ill patients’ as such, she wanted to wait for the results of the project in Rotterdam, before deciding on the governmental position

In this foundation, medical professionals collaborated to develop norms for cancer care. Although not legally binding, these norm were well respected guidelines for hospitals and health insurers (SONCOS: Stichting Oncologische Samenwerking. https://www.soncos.org/Home.html. Accessed 1 December 2016). 742 Boddaert, Douma, Van Aalst, Bijkerk, Brinkman, Brom & Degenaar, 2015; Brinkman-Stoppelenburg, Boddaert, Douma & Van der Heide, 2015. 743 Decision house. The concept of a ‘besluithuis’ was inspired by the hospice movement in the sense that it wanted to ensure that people could die in peace outside the hospital without the pressure to continue medical treatment if they did not wanted to. However, a significant difference with the English hospices was that euthanasia was explicitly considered an option at the end of life. They also wanted to provide a place where people whose usual GP or physician did object to carrying out euthanasia could have euthanasia. Although a foundation was established, no besluithuis became operational. In 2012, however, the Levenseindekliniek (End of Life Clinic) in The Hague, which shared some of these aims, opened (Verhoeven, 1983; Levenseindekliniek: Homepage. http://www.levenseindekliniek.nl. Accessed 12 March 2016).

171 regarding this issue.744 These results were presented in 1985 and by that time WVC was starting to develop concrete ideas about a future policy towards palliative care. This is the topic of the next subsection. This will be followed by a subsection devoted to a discussion of the debates in parliament and the responses by the responsible Ministers and Secretaries of State to the increasing pressure to support hospices and bijna-thuis-huizen. During this period, a fairly consistent policy to support palliative care at home and in nursing homes emerged. I suggest that we need to revise the often expressed idea that the history of Dutch palliative care policy started with the publication of a policy letter by the Minister of VWS in 1996.745 Some reflections on the reactions by the medical profession to the developments concerning palliative care are offered in the final subsection.

The Future of Palliative Care according to Policymakers: Home Care and Nursing Homes

The research projects conducted in nursing home Antonius IJsselmonde in Rotterdam were concluded in 1985 with two symposia during which the research results and their implications for the further development of palliative care were discussed. During one of these meetings, F.J. Biesenbeek, who was the head of the nursing home department at the Health Inspectorate, gave a speech entitled ‘Governmental policy and terminal care’. He opened his talk by saying:

Discussions about a governmental policy regarding this topic can be kept very brief. Indeed, some reports and notes, including the ZFR report of last March, regarding terminal care have been published. […] However, concrete governmental policy focusing on terminal care does not exist at the moment. With this observation I could probably end this talk and sit down again.746

Knowing that he was supposed to give a talk that lasted longer than a couple of sentences, Biesenbeek sketched some developments during the previous decades and raised the question whether governmental policy regarding terminal care was desirable. In his opinion, this question had to be answered affirmatively. After references to the hospices in England, with special mention for St. Christopher’s Hospice’s home care team, and the Canadian hospice teams and units in hospitals, Biesenbeek moved on to outline what he expected to become the main lines along

744 Handelingen II 1979/80, 17, p.1083. 745 See for example: Kamerstukken II 2006/07, 29509, nr.17. 746 Biesenbeek, 1985, p.5.

172 which palliative care policy would develop in the Netherlands. Firstly, specialised institutions, which he called ‘nursing homes for terminal care’, were not to be established, neither did he envisage creating a new medical specialty. Instead, the spread of knowledge about terminal care among existing care givers within the existing branches of health care had to be facilitated. Secondly, the wishes of terminally ill patients had to be complied with as much as possible. Therefore, enabling people to die at home was preferred. One of the measures that had to be implemented at a national scale was ensuring continuous availability of the home nursing services. Thirdly, the nursing home was to become increasingly important in the provision of palliative care - as a place to die and as supporter of primary care providers.747 Whereas Biesenbeek had been talking about what he expected to be the future for palliative care in the Netherlands, WVC’s Director-General of Health, J. van London, announced some actual plans at the symposium. He described that the Department was going to support palliative home care and thus would follow the advice the ZFR748 published earlier that year. He recognised that voluntary palliative home care teams could play an important role in enabling people to die at home. Like Biesenbeek, he considered placement in a nursing home a solution if it became impossible to continue to care for the patient at home.749 Several developments can be pointed at to understand these policy choices and their continued relevance during the years that followed. Firstly, studies had produced evidence that dying at home was preferred over dying in an institution by the majority of the people.750 Secondly, several authoritative advisory bodies, among which the Nationale Ziekenhuisraad751 and GR, published reports in which they deemed the establishment of independent hospices undesirable or at least unnecessary.752 The GR, for instance, claimed that the foundation of independent hospices was not necessary, but that nursing homes would have to pay more attention to this issue since they could

747 Biesenbeek, 1985, p.11; Biesenbeek, 1986. 748 Ziekenfondsraad, 1985. 749 "Overheid wil thuiszorg voor stervende patiënt”, 1985; "Terminale thuiszorg bij overheidsbeleid prioriteit”, 1985. 750 Cusveller, Jochemsen & De Heer, 1993, p.9; Van Gennip-Horsten & Schnabel, 1980; Witteveen, 1991; Handelingen II 1991/92, 69, pp.4283-4285; Kamerstukken II 1990/91, 21545, nr.9, p.12; Kamerstukken II 1991/92, 22300 XVI, nr.44, p.10. 751 National Hospital Council. 752 Gezondheidsraad, 1991; Witteveen, 1991; Handelingen II 1991/92, 69, pp.4283-4285; Kamerstukken II 1990/91, 21545, nr.9, p.12; Kamerstukken II 1991/92, 22300 XVI, nr.44, p.10.

173 attune the services provided to the needs of terminally ill patients.753 Thirdly, palliative home care fitted neatly with ideas dominating general health care policy at the time. Examples of such policies are supporting self care and care by informal care givers, and substituting comparatively expensive intramural care with supposedly more economical forms of extramural care.754 Thirdly, the policy of the government to contain the number of medical specialties explained why the idea of developing palliative care as a medical specialism was rejected.755 Finally, also the lack of financial resources to cover the additional costs that were expected if the establishment of specialised intramural services for the dying was to be facilitated were mentioned.756

Debating Palliative Care in Parliament

Although some MPs showed an interest in terminal care during the 1970s and early 1980s, as we have heard,757 the responsible members of government were increasingly questioned by MPs about terminal care from the late 1980s. These questions emerged in a variety of contexts. Palliative care was, for instance, discussed in policy debates about the elderly, cancer, the chronically ill, and the health budget.758 However, the strongest claims for the need to improve care for the dying were made during parliamentary debates about euthanasia. In particular, the small, orthodox Christian parties that considered euthanasia unacceptable, seized all opportunities to argue for the improvement of palliative care and the establishment of hospices. Like the English hospice pioneers, they claimed that good terminal care could reduce the

753 Gezondheidsraad, 1991. 754 Miltenburg, 1990, p.3; Nationale Raad voor de Volksgezondheid, 1990; Schols & Te Wierik, 1993; Spanjer, 1985; Ziekenfondsraad, 1984. The argument that extramural care would be cheaper than intramural care was not uncontested. The NRV, for instance, published a report on the possibilities of home nursing in which it called into question the idea that home nursing would be more cost efficient than intramural care (Nationale Raad voor de Volksgezondheid, 1985). 755 Kamerstukken II 1991/92, 20383, nr.16, p.18. 756 "Euthanasie is in geval van coma geen 'normaal medisch handelen'“, 1992; "Kabinet kiest tot spijt van CDA voor thuiszorg”, 1992. 757 See also: Handelingen II 1976/77, 46, p.2913; Handelingen UCV 1981/82, 29, pp.12-13; Kamerstukken II 1981/82, 17393, nr.2, p.114. 758 For example: Handelingen II 1990/91, 33, p.1949; Handelingen UCV 1989/90, 11; Kamerstukken II 1985/86, 15426, nr.38, pp.8-10; Kamerstukken II 1990/91, 21800 XVI, nr.14; Kamerstukken II 1990/91, 21814, nr.2; Kamerstukken II 1991/92, 20383, nr.15, p.5; Kamerstukken II 1991/92, 22300 XVI, nr.6.

174 demand for euthanasia and even make it completely superfluous.759 Although not as strong a claim as the ones made by the more orthodox parties, the Christian Democrats did also argue that improved palliative care could reduce the number of euthanasia requests and that governmental support for hospices and bijna-thuis- huizen was, therefore, required before the law could change with regard to euthanasia.760 Although these parties clearly considered euthanasia and the improvement of terminal care related topics, this view was not necessarily shared by their colleagues. MPs of the liberal parties explicitly argued for separating the debate on improvement of palliative care and pain management from the issue of euthanasia. Their argument was that the discussion on euthanasia was already highly complex and good care for the dying was a laudable cause in itself.761 Nevertheless, later policy debates show that the discussions regarding these two issues often remained intertwined (see Chapter 6).762 During these debates about care for the dying, MPs often indicated that they were in favour of the establishment of hospices.763 The response by the Minister, L.C. Brinkman, to a plea for support for hospices is illustrative of the position of the government at that time. Although he claimed that he was sympathetic towards the principles of the hospice movement, he doubted whether these English ideas were applicable in the Dutch context, because of the presence of nursing homes in the Netherlands. Therefore, he deemed the establishment of hospices a matter of voluntary organisations and no support would be given by the government.764 If public funding was to be made available for hospices, this would be a matter of agreement between insurers and care providers.765 Despite this lack of financial support from the government, Minister Brinkman seemed willing to show his appreciation of these

759 For example: Handelingen II 1989/90, 33, p.1719; Handelingen II 1991/92, 69, pp.4256-4257; Handelingen II 1992/93, 44, pp.3290-3295; Handelingen II 1994/95, 32, p.2121; Kamerstukken II 1987/88, 20383, nr.5, pp.6-14. 760 Kamerstukken I 1992/93, 22572, nr.275, p.6; Handelingen II 1991/92, 69, pp.4258-4259; Handelingen II 1992/93, 44, pp.3276-3279; Kamerstukken II 1984/85, 18331, nr.6, pp.4-5; Kamerstukken II 1987/88, 20383, nr.5, p.9. 761 Handelingen UCV 1990/91, 48, pp.26-27. 762 Handelingen II 1991/92, 69; Kamerstukken II 1991/92, 20383, nr.14. 763 For example: Handelingen II 1989/90, 15, pp.368-373; Handelingen II 1989/90, 35, p.1900; Handelingen II 1990/91, 31; Handelingen II 1991/92, 69, pp.4258-4259; Handelingen II 1992/93, 44, p.3276; Handelingen UCV 1989/90, 11, pp.16-34; Kamerstukken II 1988/89, 20383, nr.9, pp.4-5. 764 Kamerstukken II 1987/88, 20383, nr.6, pp.8-12. See also: Handelingen II 1987/88, 21, pp.1034-1035; Handelingen II 1990/91, 33, pp.1931-1932 & 2018. 765 Kamerstukken II 1988/89, 20383, nr.10, pp.7-8.

175 initiatives as he opened the first bijna-thuis-huis in Nieuwkoop in 1989.766

Ideas on Palliative Care among Medical Professionals

The view that care for the dying did not need to be approached as a medical specialty or provided in specialised intramural institutions seemed relatively noncontroversial within the medical profession. Many practitioners agreed that the developments in the Anglo-Saxon world could serve as an example if one wanted to improve care for the dying. However, this positive evaluation mostly concerned hospice care as a concept and not the institutional setting. This can be illustrated by an article that was published in Medisch Contact in 1991. Its author argued against the establishment of specialist organisations and units for terminal care. This view was substantiated with references to the outcomes of the research projects in Rotterdam, the Wilkes Report (see Section 2.5), and evidence from a failed attempt to run an AIDS hostel in the Netherlands following an American example. Moreover, the forms of terminal care that had already developed within the existing health care services were highlighted.767 No articles or letters by authors disagreeing with this perspective were published in Medisch Contact in response to this article.768 A similar argument was made by Gersons-Wolfensberger, who represented the GR during a conference on the 1991 report on home care for cancer patients. She referred to Cicely Saunders and the positive impact of attention to symptom control the hospice movement had generated within medicine. Then she moved on to say that even in countries like England a preference for integration of palliative care in the general health care system existed. According to this speaker, all preconditions for such integration were fulfilled in the Netherlands. Examples given included the availability of oncological care of a high quality, the existence of medical services for pain control, and GP services that were available around the clock. In her view, the only element that was lacking was a policy to combine and coordinate these services.769

766 Kamerstukken II 1988/89, 20383, nr.10, pp.7-8. 767 Coene, 1991. 768 Earlier in 1991, however, Medisch Contact had published an article that assessed the potential role of hospices - in this article clearly modelled after the English hospices - positively (Stevens, 1991). 769 Gersons-Wolfensberger, 1992, pp.14-15. Another example is Reenders, who was critical of the value of the transfer of the English model of palliative care. According to this author, palliative care education for GPs was to be preferred

176

5.7 Palliative Care and Euthanasia: A Connection Emerges

An Overview of the Developments Related to Euthanasia

During the period covered in this chapter, euthanasia occupied a prominent position on the political agenda and in public debate. For example, the Koninklijke Nederlandse Maatschappij tot bevordering der Geneeskunst770 (KNMG) published a position paper in August 1984 that accepted that medical doctors could comply with euthanasia requests of their patients and offered ‘requirements of careful practice’. Several court cases on euthanasia took place. In July 1985, the Staatscommissie Euthanasie771 published the report it had been working on since October 1982. The conditions under which euthanasia was not punishable, which were established through court rulings, included that only medical doctors were allowed to conduct euthanasia and that the patient had to be suffering unbearably without expected future improvement of the situation. These norms were taken over by the Public Prosecution Service in 1985 to decide whether to prosecute people involved in administrating euthanasia.772 D66 MP Wessel-Tuinstra submitted a bill in 1984 that influenced political discussions about this topic. This bill aimed to decriminalise euthanasia if provided by a medical doctor who exercised due care, measured against a set of specified criteria.773 This bill did not pass, but as Kennedy argued in his social history of euthanasia in the Netherlands, the codification of euthanasia in law came to be perceived as inevitable during this period. The question was no longer whether to legalise euthanasia or not, but when this would happen and how it could best be regulated.774 The CDA and its predecessors opposed the legalisation of euthanasia, but had been included in all coalition governments since the early twentieth century. This explains why the change of the law that decriminalised euthanasia was only implemented in 2002.775 As we will see in the following chapter, the loss of the CDA in the 1994 elections and subsequent

over the establishment of special departments for the dying in hospitals (Reenders, 1983). 770 Royal Dutch Medical Association. 771 State Commission on Euthanasia. 772 Weyers, 2004. 773 Although all MPs have the right to submit a bill, this is uncommon in the Netherlands, because of the substantial amounts of preparatory work involved (Andeweg & Irwin, 2009). 774 Kennedy, 2002; Steunenberg, 1997. 775 Hoogerkamp, 1992.

177 exclusion from cabinet, created a situation in which the formal legalisation of euthanasia could be prepared. However, from a legal perspective, an important intermediate step was taken in 1993. A change of the Law on the Disposal of Corpses required doctors reporting the death of a patient to use a special form in cases of euthanasia, assisted suicide or termination of life without an explicit request of the patient. Doctors had to answer questions related to a range of aspects of the ‘requirements of careful practice’ that had been established in the case law on this form. In technical terms, this did not change the legality of euthanasia, but it ratified the practice that had already been existing for around a decade that doctors would not be prosecuted as long as the ‘requirements of careful practice’ had been fulfilled.776

Extending a Narrow Debate

As mentioned in Section 4.4, the debate on euthanasia in the Netherlands was dominated by legal and ethical considerations. Also during the 1980s, we can see that this topic was often debated in a rather narrowly defined way. Euthanasia was now widely accepted in practice and debates focused on how to regulate it. As a consequence, alternatives, such as the improvement of care for the dying, had only a limited presence in these deliberations. The committee of the GR that prepared the 1982 advice on euthanasia, for instance, did consider the connection between terminal care and euthanasia only briefly. Meeting notes show that both De Jong-Vekemans and Admiraal - the two committee members who were closely involved in improving care for the dying in nursing home Antonius IJsselmonde and the St. Hippolytus hospital - claimed that in their experience patients may ask for euthanasia even if good terminal care was provided. This settled this issue early during the work of the advisory committee.777 The editor in chief of Medisch Contact claimed in 1988 that in discussions within the KNMG, ethical and legal aspects of euthanasia had dominated previously.778 However, it is interesting that the committee advising the board of the KNMG on the response to

776 Griffiths, Bood & Weyers, 1998, pp.79-80; Jürgens, 2014, p.120. 777 Gezondheidsraad, 1982; Nationaal Archief, Den Haag, Gezondheidsraad, 1957- 1990, nummer toegang 2.15.36, inventarisnummer 1262, notes of meeting, 28 August 1980; Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 1263. 778 Spreeuwenberg, 1988; Spreeuwenberg, 1990.

178 proposals by the cabinet regarding euthanasia considered asking for its task to be extended to include advising on the provision of terminal care. The reason why this did not happen is that the editors of Medisch Contact received a series of articles on the care for cancer patients by general practitioners. The committee decided that the suggestions in these articles could also be applied to the majority of patients dying from other diseases. Some articles from authors working in other fields of health care, such as nursing homes and specialist care, were commissioned to present a broader perspective. Therefore, the committee decided that it was not necessary to draw up guidelines for terminal care itself.779 Although Medisch Contact was read widely, it is likely that the impact of a formal set of guidelines endorsed by the KNMG board would have had a stronger impact on the practice of terminal care in the Netherlands. Later, the KNMG started to pay more attention to palliative care, but did not want to connect this issue to euthanasia. As one of its board members said in 1996: ‘both need to be organised well’.780 A similar change in which attention was paid to palliative care in the context of discussions on euthanasia can be identified in the political debates during the late 1980s. As illustrated in Section 5.6, palliative care came to be more often discussed during parliamentary debates about euthanasia from this time. This change was mostly due to MPs representing Christian parties starting to press for support for palliative care once specialised intramural palliative care services had emerged.

Points of View taken by People and Organisations involved in Palliative Care

In contrast to the situation in England, the positions with regard to euthanasia differed sharply among people involved in developing services for the dying in the Netherlands. In the case of professional home care services and units in hospitals explicit claims about the acceptability of euthanasia were rare. This can likely be explained by the fact that these institutions were already operating in a rather secularised way, and as part of larger health care organisations. Although individual variations in perspective certainly existed between people and organisations, it is possible to classify other initiatives to improve palliative care and their ideas on euthanasia as belonging to one out of three groups.

779 Spreeuwenberg, 1988. 780 "Kabinet zoekt alternatieven”, 1996.

179

A first group was formed by the people and organisations who considered good palliative care a worthy cause in itself and did neither reject nor advocate euthanasia. Euthanasia was considered a matter between individual patients and their doctors.781 This stance was dominant among voluntary palliative home care teams and bijna- thuis-huizen. These organisations could take this stance, because medical care continued to be provided by the patient’s GP. Moreover, the ideas of Elisabeth Kübler- Ross on allowing people to shape their own death were an important source of inspiration for the people involved in these organisations. This tenet was considered more important in providing patient care than Kübler-Ross’ rejection of euthanasia.782 A second group was formed by organisations and people who were not in favour of euthanasia, but did not rule it out as a matter of principle. They hoped that good palliative care would reduce the number of euthanasia requests, but argued that situations could exist in which a patient may request euthanasia despite good care being provided. This position was defended, for example by people in Antonius IJsselmonde.783 However, this view was not necessarily shared among nursing homes as many still had a religious identity and objected to euthanasia.784 The final group was formed by those who rejected euthanasia as a matter of principle. This position often stemmed from the conviction that euthanasia could not be tolerated from a religious perspective.785 These people actively started developing palliative care to offer an alternative to euthanasia once it came to be increasingly accepted in the Netherlands during the 1980s. In line with the English hospice pioneers, they often claimed that good palliative care would make euthanasia redundant. As mentioned before, the units in care homes that were established by the CHN were based on this foundation. Also in the first high care hospices, such as Kuria and Hospice Rozenheuvel, such arguments were used as major justification for the need to establish these institutions. If patients in these hospices would persist in a euthanasia

781 Reerink, 1988. 782 Groeneveld, 1994; Poll, 1997; Reerink, 1988; Schmidt, 1994; Veenhof, 1994. 783 Algra, 2001; Oostvogel, 1984, p.53. 784 However, examples were also known of nursing home physicians who took a more liberal stance towards euthanasia and did not object to providing euthanasia in their nursing home if requested by the patient and legally acceptable (Keizer, 1996; Keizer, 2002). 785 This view was certainly not shared by all Christians in the Netherlands. H.M. Kuitert, a theologian at the Vrije Universiteit (Free University) in Amsterdam was probably the best known exponent of the more liberal Christian perspective on euthanasia (Kuitert, 1981; Kuitert & Van Leeuwen, 2000).

180 request, they would be transferred back home or to another care provider.786 The categorical rejection of euthanasia by these organisations and the fact that they pointed at the inadequacy of care for the dying in existing facilities to justify their existence, did result in a polarisation of the euthanasia debate towards the end of the 1990s.787 This development will be analysed in the next Chapter.

5.8 Comparative Reflections and Conclusions

Service Development

During the 1980s and early 1990s, a range of services to provide care for the dying were established in the Netherlands. These services varied from voluntary palliative home care teams to specialised units in hospitals and from units in care homes to high care hospices. In the next chapter, we will see that the number of specialised services for the dying increased substantially after the mid 1990s. However, we can conclude that all models of palliative care common in the Netherlands had been established by the early 1990s. An important explanation for the variety of services that emerged in the Netherlands can be found in the different visions of the people who were establishing these services, as well as practical considerations. The people founding Hospice Rozenheuvel, for instance, clearly wanted to establish a hospice that resembled the English hospices as closely as possible and succeeded in this aim. Initially, the CHN aimed to develop similar institutions, but due to financial constraints they settled for units in care homes. The NHB, on the other hand, took inspiration from a visit to England, but decided that they wanted voluntary care to prevail. The relatively small size of their bijna-thuis-huizen was also motivated by the existence of governmental regulation that would make establishing larger institutions substantially more complicated. Hence, we can come to the conclusion that this combination of preferences of the people involved in establishing specialised palliative care services as well as practicalities shaped the transfer of the English hospice concept to the Netherlands.

786 De Visser, 2002; "Hospice”, 1991; Veenhof, 1994. 787 Hoffmann, 2005, pp.54-55.

181

If we compare the services that developed in the Netherlands to the services available in England, we can conclude that, on the one hand, day care services did not develop in the Netherlands. On the other hand, voluntary palliative home care teams were widely spread and bijna-thuis-huizen were even unique to the Netherlands. This voluntary work in the care for the dying aimed to contribute to the demedicalisation of death. This development stood in opposition to the medicalisation and professionalisation in English hospices during this time period. However, the plan to establish cottage hospices in England, as described in Section 2.7, shows some resemblance with the Dutch bijna-thuis-huizen in its set up, and in its aim to demedicalise death. Another difference with the situation in England was that the high care hospices that developed were much smaller than the major English hospices. Even if they employed their own medical staff, this meant that they generally did not function as much as a hub providing palliative care in various setting as the English hospices did. This phenomenon can also be explained by the fact that the Dutch high care hospices developed only once palliative home care services - voluntary as well as professional - had already been established. Another consequence of the comparatively small size of the Dutch hospices was that they were less involved in research and education than their English counterparts.788 A question that can be raised given the variety of specialised palliative care services and the lack of hospices that functioned as a hub in the Netherlands is how these palliative care services cooperated. During the period covered in this chapter, problems in this field were rare. The numbers of bijna-thuis-huizen, high care hospices, units in care homes and hospitals were still limited and they were spread reasonably well geographically. Voluntary palliative home care teams were more numerous, but they aimed to provide the same type of care and worked very locally. Hence, border issues could be resolved fairly easily amongst the teams working in adjacent areas. However, the demarcation of tasks between the voluntary palliative home care teams and the professional home care services that developed a more extensive offer for terminally ill patients could result in local difficulties. The most poignant example is provided by the developments in the region surrounding Gouda. In this city, a foundation delivered

788 However, as explained in Section 5.4, one could argue that Hospice Rozenheuvel was the exception confirming this rule during the 1990s. Hospice Demeter, which opened in Bilthoven in 2007, also explicitly saw research and education as part of its range of duties (Demeter: Academisch Hospice Demeter. https://hospicedemeter.nl. Accessed 3 November 2016).

182 voluntary palliative home care since 1985. During the two years following its establishment, cooperation with the district nurse and the regional sickness fund had been satisfactory. However, when the provincial home care association implemented its extended home care offer in this city, an acceptable division of tasks with the voluntary palliative home care service was not reached. As a consequence, the referrals to the volunteers started to consist mostly of emergency cases on Friday afternoons or patients for whom securing AWBZ funding was difficult. In October 1987, this resulted in the discontinuation of the foundation for voluntary palliative home care.789 What has not yet been explained is why specialised intramural services for palliative care developed in the Netherlands from the late 1980s, which - as mentioned earlier - was late from an international perspective. In the previous chapter, we saw that the existence of nursing homes in the Netherlands was one of the reasons why the need for hospices was not felt during the 1960s and 1970s. This changed, however, during the period discussed in this chapter. The reasons for this shift included an increasing awareness of the developments in England combined with a willingness to develop new services. Moreover, for the high care hospices and the units in care homes the de facto legalisation of euthanasia and the wish to offer an alternative was important. However, if we look at the developments from a wider perspective we can also point to other health care and social developments which contributed to the establishment of specialist palliative care services. The reputation of nursing homes, for example, was waning. Whereas they had been seen as major improvements during the late 1960s and 1970s, influences such as budget cuts, reductions in the numbers of beds, shortages of staff and the increasing care needs of their residents made these places less appreciated during the 1990s.790 Hospitals were also increasingly deemed unsuitable as places for dying persons. Not only had they developed into large scale institutions that primarily provided medical technological treatment instead of longer term care, the reduction of the number of beds and the funding restrictions imposed by the government also resulted in hospitals preferring to transfer terminally ill

789 Van Rijssel, 1988. Although I did not identify similar cases of the dissolution of voluntary organisations for this reason, it was reported that the voluntary providers of palliative home care in Utrecht also were mostly asked to care for patients for whom paid care was not forthcoming (Schrijvers, Mulder, Van den Muijsenbergh & Deyns, 1995). 790 Bouwens, 1995; "Hartenkreet over schrijnende situatie in verpleeghuizen”, 1998; Huizinga, 1991, pp.263-265; Kuipers, 1994; Van der Bles, 2007; Van Lieshout, 2004; Schmidt, 1994.

183 patients to other settings.791 The demand for palliative care services was likely also fostered by a decreasing availability of informal care. Children were living further from their parents than during earlier periods and the number of women in paid employment started to rise from the mid 1980s.792 However, internationally the Netherlands have been known for high rates of people volunteering since the second half of the 1980s. This development owed substantially to the early retirement schemes instituted in the 1980s.793 Organisations for palliative care were among the causes that benefited from this fresh supply of volunteers. A final reason to take into account is the changing mortality pattern. The absolute number of deaths had been rising steadily since the end of the Second World War, but cancer grew in importance as cause of death and surpassed cardiovascular diseases in 2008.794 It is likely that this changing mortality pattern contributed to an increased interest in palliative care as this care had more to offer to patients who suffered from a protracted illness, like cancer, than to people who often died a sudden death due to cardiovascular disease. Moreover, an extensive scenario study on cancer in the Netherlands during the period 1985-2000 was published in 1987. This report put the increasing cancer mortality and corresponding demand for care for terminally ill patients on the agenda.795 Although cancer was the predominant patient category which people developing intramural organisations for palliative care had in mind, some initiatives, such as Kuria in Amsterdam (see Section 5.4), were connected to the care for patients dying from AIDS, a disease of which the mortality rate peaked during the early 1990s.796

791 Giebing, 2013; Kappelhof, 1990, pp.19-20. 792 Jürgens, 2014, p.120; Schmidt, 1992; Visser & Hemerijck, 1997, p.42; "Zorg thuis breekt familie vaak op”, 2007. 793 Andeweg & Irwin, p.219; Felling, Peters & Scheepers, 2000, p.42; Wielenga, 2009, p.287. 794 Van der Bie & Smits, 2001, p.13; Centraal Bureau voor de Statistiek: Kanker nu doodsoorzaak nummer één. https://www.cbs.nl/nl-nl/nieuws/2009/06/kanker- nu-doodsoorzaak-nummer-een. Accessed 13 November 2016. 795 Cleton & Coebergh, 1988. 796 The first patients suffering from this disease were diagnosed in the Netherlands in 1982. After a peak during the early 1990s when the number of people dying of AIDS in the Netherlands was around 400 persons a year, this number became relatively stable about around 50 persons annually during the twenty- first century (Kappelhof, 1990, pp.17-18; Centraal Bureau voor de Statistiek: Sterfte aan aids al jaren stabiel. https://www.cbs.nl/nl- nl/nieuws/2011/48/sterfte-aan-aids-al-jaren-stabiel. Accessed 13 November 2016).

184

Impact of Policy

In Section 5.6, I mentioned that F.J. Biesenbeek expected a future policy on palliative care to consist of the following three elements: developing palliative care as a generalism and thus not establishing specialised institutions for the dying, a focus on providing terminal care in the home situation, and provision of care for patients who could no longer be maintained at their home in a nursing home. All these elements can indeed be recognised in the decisions taken by the government, WVC and the ZFR. Firstly, the availability of professional home care for patients nearing the end of their lives was extended and came to be paid for by the health insurers. Additionally, the voluntary palliative home care teams were granted funds to cover their coordination costs from AWBZ resources. Secondly, the establishment of hospices was indeed not encouraged and public resources were not made available at a national scale. Although several hospices and bijna-thuis-huizen were built with private money, this policy did also breed a completely new type of provision for intramural palliative care in the form of the units in care homes that were established by the CHN. It can also be observed that some discrepancy existed between this formal policy and the activities by Minister Brinkman. Despite the rejection of specialist intramural care for the dying, he opened the first bijna-thuis-huis and mentioned during a parliamentary debate that sickness funds and health insurers may pay for such care. The Minister was probably not more categorical in his rejection of these institutions, because of the good will towards these organisations that had been displayed by the MPs. Moreover, bijna-thuis-huizen fitted well with the aim of his party, the CDA, to create a ‘caring society’. Thirdly, the role of nursing homes in palliative care was strengthened through the project in Antonius IJsselmonde and the dissemination of best practices that were identified there. As many of these practices focused on the care for individual patients, their impact could not be traced in the context of this thesis. However, as I argued above, other developments resulting in the nursing homes being less appreciated as a location to die took place at the same time. This explains why a development that could be expected to take place, the establishment of units in nursing homes, did not occur on a large scale during the 1980s and early 1990s. A comparison between the state of affairs in the Netherlands and England during this time period falls somewhat short, because hospices had been around much longer in England and had become more widespread already. If we compare the Dutch developments discussed in this chapter diachronically with England during the (long) 1970s, we can recognise the unease of the policymakers who did not known how the

185 new institutions would fit within the wider health care system. However, where the DHSS was reluctant to decide this question and left it to the Health Authorities to deal with the hospices in their regions, the fundamental attitude towards hospices was fairly positive. Even after the publication of the Wilkes Report, for instance, no national measures to deliberately contain the growth of hospices were implemented. Dutch policymakers, in comparison, were more outspoken about the fact that they considered the establishment of independent hospices and bijna-thuis-huizen undesirable. Units in care homes and nursing homes could meet with more approval as they integrated the provision of palliative care within already existing organisations.

Euthanasia and its Impact on the Development of Palliative Care

With regard to euthanasia and its impact on the development of palliative care we can conclude that these topics were initially considered separate issues. For several pioneers of palliative care in the Netherlands, especially those involved in the services delivered by volunteers, the ongoing developments with regard to euthanasia were not a major reason to become engaged in palliative care. However, the practice that euthanasia was no longer punishable if certain criteria were fulfilled developed through case law. The establishment of high care hospices and units in care homes was a response to this situation, mostly by committed Christians. They wanted to offer an alternative to euthanasia by offering good palliative care. In line with the majority of people involved in palliative care in England, they would argue that euthanasia could not be an element of palliative care. Palliative care was starting to play a more explicit role in political debates about euthanasia once these hospices and units were operational. Although some of the MPs bringing up the issue of palliative care in these debates would not claim that all requests for euthanasia would vanish if good palliative care was available, they thought that this care should at the very least be readily available. These developments are clearly in contrast to the situation in England during the 1980s and early 1990s, where the hospices continued to oppose euthanasia and where the service models developed were not directly influenced by debates about euthanasia.

186

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

Politics and Health Care under the ‘Purple Coalition’

In 1994, a new political phenomenon known as the ‘purple coalition’, with W. Kok as the prime minister, emerged in the Netherlands.797 This government consisted of the PvdA, VVD and D66, which meant that the Christian Democrats for the first time since 1918 were not part of a government.798 In 1998, this coalition was re-elected for a second - and what would turn out to be final - term in office. Despite the PvdA being the leading coalition partner, social consensus existed about the policies of these cabinets that were aiming for social security cuts and a retreating government.799 Internationally, this government was considered a prime representative of what became known as the ‘Third Way’ within social democracy.800 Nevertheless, with regard to a considerable number of policy areas a high degree of continuity existed between the purple coalition and the preceding cabinets led by Lubbers.801 However, the absence of the CDA and other denominational parties in the coalition resulted in more liberal choices about ethical issues. The best-known examples of such choices by the purple coalitions included the legalisation of euthanasia as well as issues such as the introduction of gay marriage, legalisation of prostitution, and acceptance of Sunday shopping.802 Initially, this cabinet still had to reduce public expenses. As a consequence, the health care sector was allowed to grow by a maximum of 1.3 percent annually. Nevertheless,

797 This name was derived from the combination of the party colours of the participating Labour, Liberal and Liberal-Democratic parties. 798 Van Doorn, 1998, p.25. 799 Van der Meer, Raadschelders & Kerkhoff, 2011, p.253. 800 Giddens, 1998; Visser & Hemerijck, 1997. 801 Jürgens, 2014, p.120. 802 Andeweg & Irwin, 2009, p.136; Wielenga, 2009, pp.283-314.

187 all actors involved considered a growth of at least 2.7 percent necessary to be able to satisfy the demand for care. This resulted in a marked increase of the hospital and nursing home waiting lists during the late 1990s, which came to figure prominently on the political agenda during the second term in office of this coalition.803 To resolve this problem, the Minister decided to abandon the budget ceiling and implement unrestricted funding for most branches of the health care system. In 1999, for instance, an additional fl 5.6 billion - which resulted in a total budget of fl 66 billion - was spent on health care.804 The expenses that were induced by this measure could be covered thanks to the recovery of the economy during the first term in office of the purple coalition. This resulted in increased prosperity, decreasing unemployment rates, and diminishing budget deficits.805 Another noteworthy characteristic of the health care policy of the purple cabinets was that radical reforms of the health care system were not attempted, because some of the major plans - such as the ‘Dekker plan’ of 1986 - that had been presented during the previous decade had failed. Instead, market based elements were implemented in the health care system using an incremental approach.806

Politics and Health Care since 2002

The run-up to the 2002 elections was the most tumultuous the Netherlands had ever seen, because the new, right-wing party Lijst Pim Fortuyn807 (LPF), named after its leader, entered the scene. Pim Fortuyn heavily criticised the policies implemented by the purple coalition and as a result the public perception of this government and the parties involved rapidly changed from fairly positive to outright negative. Nine days before the election, Pim Fortuyn was murdered, but his party became the second largest party - after the CDA - with 17 percent of the votes. A coalition of CDA, LPF and VVD, which was led by J.P. Balkenende, was formed. However, within three months in office, rows within the LPF parliamentary party as well as among its cabinet members resulted in the fall of this cabinet.808 New elections were held in January

803 Companje, 2008b, pp.590-591. 804 Companje, 2008b, p.593; Dols & Kerkhoff, 2008, p.826. 805 This remarkable success of the Dutch economy was internationally referred to as the ‘Dutch miracle’ (Visser & Hemerijck, 1997; Wielenga, 2009, p.296). 806 Companje, 2008b, pp.590-591. 807 List Pim Fortuyn. 808 Wielenga, 2009, pp.298-303.

188

2003, after which a cabinet in which D66 replaced the LPF was formed.809 The elections of 2006 resulted in another cabinet with the CDA as the largest party and Balkenende as the prime minister. This time, the other coalition parties were the PvdA and the small orthodox Christian party ChristenUnie810 (CU).811 Perhaps unsurprisingly, the first Balkenende cabinet did not implement major health policies. However, some choices by its Minister of Health, E.J. Bomhoff, strengthened the interpretation of the health care funding arrangements as unrestricted. The total costs of health care had been rising by a few percent per year in the recent past, but for 2002 this rise was around 10 percent.812 As this increase surpassed economic growth almost by a factor of 10 and in view of the ageing population, the Balkenende II government felt they had to contain the costs of the AWBZ. Among the measures implemented were stricter criteria for the provision of AWBZ care and the extraction of some social support tasks from the AWBZ package. These tasks were transferred to the Wmo, which was executed by the local authorities as per January 2007, and thus marked a shift from insured entitlement to municipal provision (see Chapter 3).813 Moreover, the mechanism to allocate resources to the organisations providing AWBZ care was reformed. Instead of funding provisions such as a bed in a nursing home, the care requirements of the clients were defined in terms of functions, such as housekeeping or nursing care. From 2007, these functions were grouped in packages named Zorgzwaartepakket814 (ZZP) that were linked to broad descriptions of clients that fitted the ZZP. Ten of these ZZPs existed for intramural care and nursing from 2007.815 Palliative care for patients who would benefit from a stay in a care home or nursing home was included as ZZP-10. The Balkenende II cabinet also decided to introduce more market elements into the health care sector. This resulted in an overhaul of the insurance system which abandoned the distinction between sickness funds and private insurers and introduced a mandatory basic insurance package for all citizens on 1 January 2006 (see Chapter 3).

809 D66 left the government after a disagreement about an immigration case and the way in which the Minister had dealt with it in the summer of 2006. The CDA and VVD continued as a minority government with as main tasks to prepare the budget and the elections. This explains why the cabinet that was formed after the 2006 elections is referred to as the Balkenende IV cabinet. 810 Christian Union. 811 Wielenga, 2009, pp.306-307. 812 Dols & Kerkhoff, 2008, p.859. 813 Companje, 2014, pp.164-166; Dols & Kerkhoff, 2008, p.862. 814 Care Intensity Package. 815 Companje, 2008b, pp.598-599; Dols & Kerkhoff, 2008, pp.833-834.

189

The 2010 elections were won by the VVD, but the political landscape had become fragmented. As a consequence, a minority government was formed with the CDA. The Partij Voor de Vrijheid816 (PVV) was not a member of this government, but an agreement was reached during the formation of the cabinet that guaranteed support for certain policy decisions. This construction collapsed after circa one and a half years when the parties involved could not reach agreement over further budget cuts necessary to reduce the budget deficit. Activities of the cabinet mostly focused on economic and international policy and the impact of this government on health care was limited. After the election in 2012, a cabinet of VVD and PvdA took office. As these parties were ideological opposites, the coalition agreement consisted of rather concrete plans. In addition to reforms of the labour and housing market, cost containment in health care was an important theme. An annual growth of 1 percent was allowed from 2015. The major change with regard to the health care system involved the decentralisation of long term care and social support, which was addressed in more detail in Chapter 3. These measures resulted in nursing homes closing down or reducing their number of beds.817

Overview of the Chapter

As for Section 2.7 on England, we are entering the past two decades in this final chapter on the development of palliative care in the Netherlands. In this chapter, the analysis will operate at a less detailed level than in the previous chapters as the recent nature of the events and the higher number of palliative care related initiatives mean that the impact of these developments is harder to evaluate historically. The major themes that will be discussed are the formal legalisation of euthanasia and the palliative care policy programme that was established from 1998 to ensure that people would not request euthanasia due to insufficient palliative care being available

816 Party for Freedom. This party was established in 2006 and offered an eclectic combination of mostly left wing social policies, highly restrictive immigration policies, and an anti-Islam view. The latter positions were the reason why other parties did not want to form a cabinet in which the PVV was a full member. 817 Companje, 2014, p.170; Kroneman, Boerma, Van den Berg, Groenewegen, De Jong & Van Ginneken, 2016; Rijksoverheid: Tijdlijn Kabinet-Rutte-Asscher. https://www.rijksoverheid.nl/regering/inhoud/wat-heeft-het-kabinet-bereikt/ tijdlijn. Accessed 5 December 2016.

190

(Section 6.2). In Section 6.3, I discuss the change of the governmental position with regard to funding hospices and bijna-thuis-huizen that took place in 2007 as well as the consequences of the recent AWBZ reforms for these organisations. Recent developments and current issues are the topic of Section 6.4. In the first subsection, the growth of the number of hospices and bijna-thuis-huizen will be discussed. This will be followed by an overview of the governmental policy initiatives that were taken after the first palliative care policy programme had ended in 2003.

6.2 Legalising Euthanasia and Developing a Policy Programme to Facilitate the Development of Palliative Care818

Preparing the Legalisation of Euthanasia

In her Christmas Speech of 1996, Queen Beatrix paid tribute to the volunteers who were involved in palliative home care. This was the first time palliative care related issues were addressed during this speech.819 As I will show later in this section, 1996 had been a remarkable year for palliative care in the Netherlands, because the first policy letter solely on this topic had been sent to Parliament by the Minister of VWS in April. One of the reasons why this policy letter was published was the intended legalisation of euthanasia. In April 2002, this change of the Dutch Penal Code came into force. From that time, medical doctors were allowed to practise euthanasia and assist with suicide if a set of conditions was fulfilled. These criteria included, for instance, an explicit and voluntary request of the patient and unbearable suffering. Although the change in law was a major development in legal technical terms and from a symbolic perspective, the change of the practices as they had developed since the 1993 alteration of the Law on the Disposal of Corpses was less significant.820

818 It is often written that euthanasia is legal in the Netherlands. Technically, however, the change of the law of 2002 did not legalise euthanasia, but euthanasia was no longer punishable if certain requirements were fulfilled. For reasons of readability, I will ignore this nuance in this thesis. 819 Aarnoudse, 1999. 820 Weyers, 2004.

191

During the preparation of the legal change, the debate on euthanasia became increasingly polarised. On the one hand, some advocates wanted to make euthanasia acceptable in a wider range of situations, such as mental illness or for those who considered their lives completed. Opponents of euthanasia, on the other hand, were making stronger claims that euthanasia would not be necessary if good palliative care was provided. And indeed, evidence had become available that knowledge about care for the dying among medical doctors could be improved.821 As patient autonomy was the dominant argument used in the Netherlands in favour of euthanasia, this claim did not meet with much response among those advocating the legalisation of euthanasia.822 As a consequence, some felt that palliative care was framed as a response from a traditional minority that could not reconcile itself with euthanasia as a modern way to support the dying.823 The Minister of Health in the purple coalition was D66 politician E. Borst. Although her party was known as the political party most eager to legalise euthanasia, she took a more nuanced view when it came to palliative care. She propagated the perspective that euthanasia could only be legalised if good palliative care was available to all. In that case, euthanasia would not replace bad care, but could be a dignified final stage of good palliative care.824 This was the context in which she developed the palliative care policy programme described in the following subsections. In addition to the practical measures that were taken, this approach appeared to depolarise the debates about euthanasia and palliative care over the course of events. Moreover, it changed the view that palliative care was an issue owned by the anti-euthanasia lobby.825 It is illustrative of the role of this Minister that a new, annual prize for innovative initiatives in palliative care in the Netherlands was named after Borst in 2007.826 It is likely that

821 Dorrepaal, 1989; Van der Maas, Van Delden & Pijnenborg, 1991. 822 Beverdam, 2014; De Bruijne, 2013; Woerdenbag-van Aken, 2010. 823 Lieverse, 2015. This perception may have been fostered by the fact that some of the initiatives with regard to palliative care were indeed taken by orthodox Christians, who were increasingly regarded a minority, as it had been the moderate Christians in particular who had left the church during the secularisation of the previous decades (De Hart, 2014, pp.110-112; Hellema, 2012, pp.204-206; Kennedy, 2014, pp.72-73). Also the data provided in Table 1 in Section 4.4 illustrate that the opponents of euthanasia were, with 9 percent in 1991, a minority in the Netherlands. 824 Borst-Eilers, 2003; Borst-Eilers, 2009; "Borst: Palliatie geen alternatief voor euthanasie”, 2001; "Minister Borst blijft geld voor hospices weigeren”, 1996; Ten Haaft, 1996b; Kamerstukken II 1995/96, 24400 XVI, nr.82. 825 Beverdam, 2014. 826 Bruntink, 2008.

192 her training as a medical doctor contributed to her acceptance among people involved in palliative care, while preparing the legalisation of euthanasia at the same time.827

1996 Policy Letter

By the time the Minister presented her policy letter on palliative care in 1996, MPs had already asked her several times to improve palliative care and increase the number of hospices. As we have seen in the previous chapter, several types of services had developed, but a wide variation in the types of facilities, funding streams and geographical spread existed.828 The policy letter had to provide the starting point for improving this situation. A five year policy programme to develop palliative care was announced in the letter. This programme had to investigate which facilities for palliative care would be required in the future. Although this may seem to leave space for the establishment of specialised inpatient hospices that resembled those in England, this was explicitly claimed to be undesirable by the Minister. She stated that care for the dying would preferably be delivered at home and only if this was no longer possible within institutions. The policy of integrating specialised care as much as possible within generalist health care services that had already been propagated by previous governments was referred to as a reason not to call for more hospices and bijna-thuis- huizen. Preference was given to the improvement of the quality of already existing services. Another argument used to support this position was that many hospitals and care homes were having spare capacities. Instead of reducing these general beds and establishing comparatively small independent services, some of this overcapacity could be used for palliative care.829 Minister Borst expected that the peaceful and homely atmosphere offered by hospices and bijna-thuis-huizen, could also be generated in existing intuitions by creating separate departments.830 The positive evaluation of the palliative care unit in Antonius IJsselmonde was referred to as evidence to support this idea.831

827 Parlement & Politiek: Dr. E. (Els) Borst-Eilers http://www.parlement.com /id/ vg09lldosxzi/e_els_borst_eilers. Accessed 15 December 2016. 828 Aanhangsel Handelingen II 1995/96, nr.781; Handelingen II 1994/95, 18, p. 311. 829 Handelingen II 1995/96, 72. 830 Ten Haaft, 1996b. 831 Kamerstukken II 1995/96, 24400 XVI, nr.82.

193

Although the foundation of hospices and bijna-thuis-huizen would not be encouraged, no measures were taken to prevent their establishment. In an interview, Minister Borst was quoted as saying: ‘I do not object to hospices arising spontaneously, but it is not my policy’.832 Moreover, she pointed at the fact that no rule existed that prohibited the private health insurers to pay for care in hospices. Sickness funds could opt to do the same from the three percent of their budget they could spend flexibly.833 Paying for such care would even be desirable if patients had otherwise to be admitted to a hospital or a nursing home.834 Another option she suggested was that hospices could become associated with a hospital or nursing home, which would allow them to access public resources through these organisations instead of continuing independently.835 During the parliamentary debate about this letter, MPs praised most of the initiatives presented. However, the decision not to award public funding to hospices and bijna- thuis-huizen was contentious. Especially MPs representing Christian parties urged the Minister to consider supporting the hospices and bijna-thuis-huizen financially, expressing doubts as to whether hospitals, care homes and nursing homes could indeed provide an environment for the patients and their families as comfortable as available in hospice and bijna-thuis-huizen.836 Also the responses to the policy letter within the health care field were mixed. Nursing homes were pleased to see their role as places to care for the dying consolidated, whereas hospices were disappointed to find that measures to improve their - often precarious - financial situation were not forthcoming.837 Moreover, a Delphi study, which surveyed, among other groups, GPs, nursing home physicians, and specialists in internal medicine about the future of palliative care in the Netherlands, found a high degree of support for the development and public funding of high care hospices. These organisations could develop into places where specialist knowledge on palliative care was available and could be shared. Therefore, the authors concluded that it would be desirable that the government reconsidered its position not to promote the establishment of independent hospices.838

832 Ten Haaft, 1996b. 833 "Minister Borst blijft geld voor hospices weigeren”, 1996. 834 "Borst wil langdurige stervensbegeleiding mogelijk maken”, 2000. 835 "Minister Borst blijft geld voor hospices weigeren”, 1996. 836 Kamerstukken II 1995/96, 24400 XVI, nr.101. 837 Baar & Van der Kloot Meijburg, 2002, p.109; Enkelaar, 1999; Meijer van Putten, 1997. 838 Samplonius, Van Dijk & Post, 1998.

194

From Policy Letter to Policy Programme

To put the intentions expressed in the 1996 policy letter into practice, a five-year policy programme for palliative care839 was implemented from 1998. The programme received an annual budget of fl 7 million and consisted of three clusters of activities. Firstly, funding was made available for a number of research projects that would improve knowledge and quality of palliative care.840 Secondly, Centra voor de Ontwikkeling van Palliatieve Zorg841 (COPZs) were established in Amsterdam, Groningen, Utrecht, Nijmegen, Rotterdam and Maastricht in 1998.842 In these centres, the university hospital, the faculty of medicine, the Comprehensive Cancer Centre843 and local providers of palliative care had to cooperate to improve palliative care by coordinating services in their region. Another important part of the work by the COPZs was to run consultation services on palliative care for primary care providers.844 Two years after the establishment of the COPZs, the regions covered by the consultation teams catered for circa 43 percent of the population of the Netherlands.845 Methods of consultation and target groups of these services were diverse. Due to the locations of the COPZs, national coverage of consultation services was not achieved during the existence of the COPZs. This changed after the COPZs were dissolved and most of their tasks transferred to the Comprehensive Cancer Centres on 1 January 2004.846 To ensure that palliative care advice was available to

839 This programme was named Stimuleringsprogramma Palliatieve Zorg in de Terminale Fase (Programme for Stimulating Palliative Care in the Terminal Phase). 840 Handelingen II 1995/96, 36, p.2855; Handelingen II 1995/96, 88, p.5883; Handelingen II 1997/98, 22; Kamerstukken II 1996/97, 23877, nr.13; Kamerstukken II 1998/99, 26200 XVI, nr.83; Kamerstukken II 1999/00, 26691, nr.5. 841 Centres for the Development of Palliative Care. 842 Handelingen II 1997/98, 62. 843 In Dutch known as Integrale Kanker Centra. In contrast to the WHO usage of this term, Dutch Comprehensive Cancer Centres are not clinical facilities that provide care for cancer patients. Their main tasks are related to conducting registration for cancer statistics, simulating knowledge dissemination by consultation and establishing guidelines for diagnosis and treatment of cancer patients (Van Reuler, 2008). 844 Courtens & Spreeuwenberg, 1999; De Korte-Verhoef, 2004; Teunissen & Witteveen, 2005; Kamerstukken II 2000/01, 27400 XVI, nr.22. 845 Toetsingscommissie COPZ, 2001. 846 De Korte-Verhoef, 2004; Kuin, Courtens, Deliens, Vernooij-Dassen, Van Zuylen, Van der Linden & Van der Wal, 2004; Kamerstukken II 2004/05, 29509, nr.4.

195 any professional care giver in the Netherlands, the Comprehensive Cancer Centres developed a system consisting of 21 regional multidisciplinary consultation teams.847 Thirdly, Minister Borst established the Projectgroep Integratie Hospicezorg848 (PIH). This project group was tasked with preparing the integration of hospices and bijna- thuis-huizen - in terms of policy, management, and funding - into the health care system.849 The Minister considered establishing such a project group necessary, because the specialised organisations for palliative care had not yet shown sufficient initiatives or set out a path towards the integration of palliative care into the health care system.850 The PIH had to steer and accelerate this process.851 After circa 15 visits to providers of palliative care, a survey of existing facilities, several draft proposals that were circulated among relevant organisations for feedback, and 10 pilot projects the PIH published its final report in 2001.852 In this report, the PIH argued that good palliative care needed to be available at every place where terminally ill patients may be staying. Acknowledging that not all care could be provided at every place, the PIH recommended that the care providers would cooperate and support each other by sharing their expertise. This had to be made possible by the implementation of a network model, in which care providers themselves would be responsible for making connections between the different places where terminally ill patients were staying to ensure a satisfactory availability and variation of services available in their region. Based on the number of hospitals and the regions they served, the PIH assumed that 70 to 80 networks were required nationally.853

847 Teunissen & Witteveen, 2005, p.362; Medisch Contact: Te weinig consultatie bij palliatieve zorg. https://www.medischcontact.nl/nieuws/laatste-nieuws/artikel/ te-weinig-consultatie-bij-palliatieve-zorg.htm. Accessed 14 August 2016. 848 Project Group Integration Hospice Care. The PIH consisted of a chair and eight members affiliated to a range of organisations relevant to palliative care, among these were the umbrella organisation Vrijwilligers Palliatieve Terminale Zorg Nederland (Volunteers Palliative Terminal Care the Netherlands) (VPTZ) and a nursing home. 849 De Minister van Volksgezondheid Welzijn en Sport, 1999; Projectgroep Integratie Hospicezorg, 2000a, p.11. 850 Aarnoudse, 1999. 851 De Minister van Volksgezondheid Welzijn en Sport, 1999; Handelingen II 1997/98, 62. 852 Bruntink, 2000; Projectgroep Integratie Hospicezorg, 1999c; Projectgroep Integratie Hospicezorg, 1999b; Projectgroep Integratie Hospicezorg, 1999a; Projectgroep Integratie Hospicezorg, 2001. 853 Bruntink, 2000; Projectgroep Integratie Hospicezorg, 1999c; Projectgroep Integratie Hospicezorg, 1999a; Projectgroep Integratie Hospicezorg, 2000a, pp.15-19; Projectgroep Integratie Hospicezorg, 2000b; Projectgroep Integratie Hospicezorg, 2000c; Projectgroep Integratie Hospicezorg, 2000d;

196

Most of the recommendations made by the PIH triggered positive responses from stakeholders and politicians.854 The PIH’s recommendations were formally adopted by the Minister in 2002. This entailed, for example, the establishment of regional palliative care networks and a national support body for palliative care named Agora.855 Additionally, Minister Borst implemented some changes with regard to the funding of palliative care in care homes and nursing homes. On the condition that they were members of a palliative care network, care homes and nursing homes could apply for an increase in the compensation for terminally ill patients with complex care demands that were nursed at a unit for palliative care. Such a measure had been debated before by MPs, but the minister had rejected this suggestion because differentiating the tariff per patient group was deemed incompatible with existing funding mechanisms.856 However, as plans were being made to implement ZZPs as funding mechanism (see Section 6.1), which would lead to an even more extensive differentiation between patient groups, this objection did no longer hold. Moreover, pressure to resolve the issue had been increasing as some stories had appeared in the media of palliative care units in care homes rejecting specific patients, because their care would be extraordinary expensive.857 Therefore, a maximum of €90 of additional funding per day per patient who received palliative care could be charged from 1 July 2002.858 The expenses for this measure were covered by financial resources that had become available for palliative care during the preceding budget round, when one of the CU MPs, A. Rouvoet, had introduced an amendment resulting in a structural increase of

Projectgroep Integratie Hospicezorg, 2001; Stevens, 2000; Stevens, 2003. 854 NPTN, 2000. However, some scepticism about the possibilities for integration of hospices within the health care system was voiced by the hospices (Bruntink, 2001b). Moreover, the chair of the VTZ, despite having been a member of the PIH, later said he thought that the role of voluntary palliative home care teams had insufficiently been taken into account (Bart, 2004; Bruntink, 2001a, p.27; Jordan, 2007, p.141). 855 Kamerstukken II 2001/02, 28000 XVI, nr.97; Kamerstukken II 2001/02, 28000 XVI, nr.109; Kamerstukken II 2002/03, 28600 XVI, nr.19. 856 Aanhangsel Handelingen II 1999/00, nr.1398; Handelingen II 1996/97, 26, p. 2017; Kamerstukken II 1998/99, 26200 XVI, nr.64; Kamerstukken II 1998/99, 26200 XVI, nr.83, p.2; Kamerstukken II 2000/01, 27400 XVI, nr.22. 857 "Terminale patiënt drukt te zwaar op de begroting”, 1999. 858 Kamerstukken II 2001/02, 28000 XVI, nr.109; Kamerstukken II 2002/03, 28600 XVI, nr.19. Later this allowance was included in ZZP-10. The condition that the care should be delivered at a unit for palliative care was removed in 2013 (Kamerstukken II 2013/14, 29509, nr.46).

197 the annual budget for palliative care of €10 million.859 The growing number of hospices and bijna-thuis-huizen and the attention for difficulties experienced by these organisations would in 2007 result in more generous funding for these organisations. This change is elaborated on in the following section.

6.3 Changing Funding for Hospices and Bijna-Thuis-Huizen

Funding Care in Hospices and Bijna-Thuis-Huizen

Although the establishment of hospices and bijna-thuis-huizen was not encouraged by the government, this did not imply that these organisations did not receive public funding. The leading principle was that hospices and bijna-thuis-huizen substituted care at home. Therefore, they could access the funding streams that would have been available for patients if they had stayed at home. This included care by GPs and physiotherapists as well as home care.860 Additionally, hospices and bijna-thuis-huizen could draw on the CVTM-regeling to cover the costs of coordinating the work of their volunteers. As a consequence, the costs of the premises and subsistence in hospices and bijna-thuis-huizen were the main expenses that had to be covered from private sources.861 This policy was in line with the recommendations of the PIH and supported by the NHB. In its response to the draft report of the PIH, the NHB had written: ‘To avoid misunderstandings, it has to be mentioned that the bijna-thuis-huizen generally have the view that they have to cover - at least a substantial share - of the accommodation costs from the private funds they raise themselves.’862

859 Kamerstukken II 2002/03, 28600 XVI, nr.19. Of this €10 million the care homes and nursing homes received €4.8 million. Other beneficiaries were the coordination of volunteers (€2.25 million), the Landelijk Steunpunt VTZ (€0.25 million), network coordinators (€1.63 million), Comprehensive Cancer Centres that had not been part of a COPZ (€0.46 million), Agora (€0.32 million), and research to monitor the development of palliative care (€0.29 million) (Kamerstukken II 2001/02, 28000 XVI, nr.115). 860 Kamerstukken II 2000/01, 27400 XVI, nr.22; Kamerstukken II 2001/02, 28000 XVI, nr.109; Kamerstukken II 2002/03, 28600 XVI, nr.19. 861 Kamerstukken II 2001/02, 28000 XVI, nr.97; Kamerstukken II 2001/02, 28000 XVI, nr.109. 862 Projectgroep Integratie Hospicezorg, 2000d.

198

Funding Accommodation Costs of Hospices and Bijna-Thuis-Huizen

During the years that followed, it became clear that it was no longer acceptable to publicly fund only the costs of care in hospices and bijna-thuis-huizen. The total number of intramural facilities for palliative care grew extraordinarily quickly during this period: From 38 in 1999 tot circa 230 facilities in 2006, with a further 39 facilities in the process of being established in spring 2006.863 Primarily based on the evidence provided by research conducted by NIVEL,864 the new Secretary of State, C.I.J.M. Ross-van Dorp, and the MPs were satisfied with this and other developments taking place in the field.865 However, the funding of hospices and bijna-thuis-huizen was considered insufficient.866 The Monitor Palliatieve Zorg had indicated that a significant share of the independent organisations delivering intramural palliative care reported financial difficulties.867 As the Secretary of State thought that insufficient insight into this topic existed, she commissioned the management consultancy firm Berenschot to investigate this and to propose solutions for the problems identified. Ross-van Dorp was willing to reconsider the position of her predecessor, because an increasing pressure to fund hospices and bijna-thuis-huizen emerged due to the issues reported. Moreover, during her time as an MP Ross-van Dorp had, in her role of spokeswoman on palliative care of the CDA, argued that the financial problems experienced by the hospices and bijna-thuis-huizen had to be resolved.868 Nevertheless, it would not be Ross-van Dorp herself who resolved this issue, because she was replaced by M. Bussemaker in the Cabinet Balkenende IV. This new cabinet was the first coalition ever in which the CU participated. As shown before, this small, Christian party had previously started several initiatives to support palliative care. The influence of this party on the coalition agreement became, for example, visible in an

863 Mistiaen & Francke, 2006; Mistiaen, Van Ruth & Francke, 2006. This capacity was divided as follows over the different types of care providers: 33 percent nursing home units; 29 percent bijna-thuis-huizen; 17 percent hospices; 17 percent units in care homes; 4 percent other or unknown. 864 Nederlands instituut voor onderzoek van de gezondheidszorg (Netherlands Institute for Health Services Research). 865 Mistiaen & Francke, 2004b; Mistiaen, Van Hasselt & Francke, 2005; Mistiaen, Van Ruth & Francke, 2006; Kamerstukken II 2005/06, 29509, nr.9; Kamerstukken II 2006/07, 29509, nr.16. 866 Kamerstukken II 2003/04, 29509, nr.3. 867 Mistiaen & Francke, 2006; Mistiaen, Van Ruth & Francke, 2006; "Palliatieve zorg blijft groeien”, 2005. 868 See for example: Kamerstukken II 2000/01, 27400 XVI, nr.22.

199 extensive and precise statement regarding palliative care. In this document the coalition promised to invest in the improvement and the financial reinforcement of palliative care in nursing homes, hospices, bijna-thuis-huizen and at home, and in education in this field. Support for volunteers was considered important as well. Furthermore, no changes to the legal situation with regard to euthanasia would be implemented by this government.869 In June 2007, the new Secretary of State laid out her plans regarding palliative care in a letter to Parliament with the title Palliatieve Zorg: De Pioniersfase Voorbij.870 Bussemaker claimed that she supported the main policy lines set out by her predecessor, but argued that given the relatively recent development of palliative care, this health care subfield required some additional measures. For example, the knowledge developed within specialist intramural palliative care organisations had to be shared more extensively with other care givers. Enabling patients to die at home was another spearhead of the policy.871 Attached to this policy letter was the report on the financial situation of hospices and bijna-thuis-huizen written by Berenschot.872 However, during a visit to a hospice, the Secretary of State had already announced that she intended to solve the problems related to the accommodation costs experienced by bijna-thuis-huizen and hospices.873 This was in line with the main recommendations made in the Berenschot report. Since hospices as well as bijna- thuis-huizen were satisfying a demand, the Berenschot researchers advised the Secretary of State to find a solution for the lack of structural financial resources available for the accommodation costs of these institutions. This cost category had been identified as the primary cause of financial difficulties for both types of institutions. The annual accommodation costs per bed were on average €7,000 in a bijna-thuis-huis and €11,000 a high care hospice. To ensure that a stimulus to raise private funding would still exist, Berenschot recommended the Secretary of State to fund no more than 50 percent of these accommodation costs. Since hospices could be established without the need for approval by the AWBZ regional care offices, palliative care networks or VWS, people founding these organisations would have to prove that sufficient local public support for their organisation existed. Measures such as a

869 CDA, PvdA & ChristenUnie, 2007, p.42; "De stelling van Jet Bussemaker: Aan het recht op abortus en euthanasie wordt niet getornd”, 2007. 870 Palliative care: Beyond the pioneering phase. 871 Kamerstukken II 2006/07, 29509, nr.17. 872 Berenschot & JoiningMinds, 2006; Kamerstukken II 2006/07, 29509, nr.17. 873 "Twee miljoen extra voor hospices”, 2007; Kamerstukken II 2006/07, 29509, nr.17.

200 minimum occupancy rate and the ability to run the hospice during the first year of its operation without public support to cover the accommodation costs were suggested.874 The Secretary of State announced up to an additional €2 million to cover the accommodation costs of hospices and bijna-thuis-huizen, which according to the calculations made by Berenschot should be - more than - satisfactory.875 The extra allowance became available through the Subsidieregeling Palliatieve Terminale Zorg.876 However, to prove the viability of a hospice or bijna-thuis-huis it had to cover the costs of establishing the organisation and the first year of its accommodation costs from privately raised resources.877

Funding Palliative Care at the Patient’s Preferred Place

Although the situation as described in the previous subsection might lead to the impression that the issue of funding for hospices and bijna-thuis-huizen had been resolved, this was not the case in practice. Especially the repeal of the AWBZ and the implementation of the Wlz in 2015 had consequences for these organisations. Initially, hospices and bijna-thuis-huizen had been anxious that some of the care they provided would be transferred to the Wmo, because this would have made them dependent on decisions of local authorities.878 This was not the solution chosen by the Secretary of State, M.J. van Rijn. Costs of palliative care would in the long run be integrated within the Zvw, but for a transitional period these costs would be covered by either the Zvw or Wlz. The leading principle was that palliative care would be paid for under the regulation that had covered the costs of care of patients before they became terminally ill. Complaints were voiced about a number of consequences of this decision. For instance, the units in nursing homes had to deal with more complex administrative

874 Berenschot & JoiningMinds, 2006. 875 Kamerstukken II 2006/07, 29509, nr.17. 876 Regulation for Palliative Terminal Care Subsidies. The Subsidieregeling Palliatieve Terminale Zorg replaced the CVTM-regeling from January 2007. This new regulation was established as it had been considered inappropriate to move the responsibility for funding palliative care networks and the coordination of volunteers in palliative care to individual local authorities when the Wmo was introduced (Van Reuler, 2007; Kamerstukken II 2005/06, 29509, nr.9; Kamerstukken II 2005/06, 29509, nr.15; Kamerstukken II 2007/08, 29509, nr.19; Kamerstukken II 2007/08, 29509, nr.20). 877 Kamerstukken II 2007/08, 29509, nr.19. 878 "Huisarts moet spil zijn in palliatieve zorg”, 2011.

201 requirements,879 differences between the statutory contributions patients had to make towards the costs of their care in hospices and bijna-thuis-huizen differed depending on which scheme their palliative care was covered under, some home care organisations were rejecting terminally ill patients as their budgets were exhausted, and the reimbursements given to the hospices by the health insurers were too low to cover the costs of the care provided.880 After it had attracted media attention, the latter issue quickly became a topic of political debate. The Secretary of State appointed a team tasked with solving urgent, unforeseen problems on an ad hoc basis. Moreover, the health insurers were instructed that palliative care was covered by the basic health insurance package all Dutch citizens were obliged to take out, and that reasonable reimbursement rates had therefore to be agreed with the hospices.881 Future will have to tell whether these problems were mere teething troubles that came with the repeal of the AWBZ or whether they point to a more deeply embedded mismatch between the new health care funding regime and palliative care. The arguments used in these discussions point to a changing discourse with regard to the funding of hospices and bijna-thuis-huizen. While it previously had been questioned whether such organisations had to receive funding beyond what a patient would receive at home, it was now fully accepted that they had to be funded and a difference between costs for care and accommodation costs was no longer made. Although the government did not abandon its position that palliative care had to be integrated within the health care system and should not develop as a specialism, the idea that people had to be enabled to die at home became less dominant. Instead, patient choice regarding the place of death became the central tenet in this discourse.882 As a result, there was recognition that the ever increasing number of hospices and bijna-thuis-huizen (see next section), were places that may be preferred by the patient and thus had to receive funding. This shift can be illustrated by a claim Secretary of State Van Rijn made in 2013:

879 In the past all their costs had been reimbursed under the AWBZ. 880 One of the hospice chief executives mentioned in an interview that the costs to care for a patient were around €600 per day, whereas the health insurers paid €350 per day ("Geen barrière in palliatieve zorg”, 2016; Gunst, 2015; "Hospices in problemen”, 2016; Kok & Kool, 2016; Mandemaker, 2015; Molenaar, 2015; "Van Rijn: Thuis sterven mogelijk”, 2016). 881 Kamerstukken II 2015/16, 29509, nr.53. 882 De Wit, 2014; Kamerstukken II 2016/17, 29509, nr.64, p.4.

202

I consider it important to maintain the uniqueness of hospices and bijna-thuis- huizen as much as possible. Therefore, I plan to investigate how I can make the Regeling palliatieve terminale zorg permanent.883

6.4 Recent Developments and Current Debates

A Growing Number of Hospices and Bijna-Thuis-Huizen

Already in 2004, indications existed that the demand for specialised palliative care beds was satisfied and that the number of organisations providing this care was levelling off.884 The AWBZ regional care offices were using the figure of 4 to 6 beds per 100,000 population as a guideline, and a survey found that sufficient beds were available according to this standard.885 Nevertheless, the density of palliative care beds in the regions covered by the AWBZ regional care offices varied between 0.6 and 11.9 beds per 100,000 inhabitants.886 Due to a lack of data regarding the occupancy rates of the beds in the different regions, the interpretation of these figures was unclear. Moreover, a comparatively low number of facilities was not automatically perceived as a problem by the people involved. One of the possible explanations for this finding was that developments in extramural palliative care had not been taken into account.887 Although sufficient palliative care beds seemed available in 2004, the number of hospices and bijna-thuis-huizen continued to grow during the years that followed. In 2012, 76 bijna-thuis-huizen and 36 high care hospices were counted, and additional hospices and bijna-thuis-huizen opened during the years that followed.888 The

883 Kamerstukken II 2013/14, 29509, nr.46, p.4. 884 "Groei hospices neemt af”, 2004; Van Lieshout, 2004. 885 Mistiaen & Francke, 2004a; Zorgverzekeraars Nederland, 2004. 886 17 regions had a lower and 6 regions had a higher than recommended capacity, while the capacity in 9 regions was in line with the guideline. Due to the growing number of facilities the number of regions with less than 4 beds per 100,000 inhabitants had dropped to 8 by spring 2006 (Mistiaen, Van Ruth & Francke, 2006). 887 Mistiaen & Francke, 2006; Kamerstukken II 2004/05, 29509, nr.4; Kamerstukken II 2005/06, 29509, nr.15. 888 "Burgemeesters openen hospice”, 2013; "Campagne 'Thuishuis' Wijchen van start”, 2012; De Vries, 2014; Middelburg-Hebly, Galesloot, Van Trigt & Jansen- Segers, 2014, p.32; Pols, 2013; Stegenga, 2010; "Sterfhuis openen in feestjaar is ons ideaal”, 2009; Stijkel, 2011; "Zwolle krijgt eerste hospice”, 2014.

203 differences in geographical spread, however, continued to exist.889 In addition to the increased financial viability of running a hospice or bijna-thuis-huis once public funding covered the accommodation costs of these institutions, some other reasons can be pointed at to explain the continued growth of the number of such organisations. Firstly, bijna-thuis-huizen had initially been envisaged by the NHB as emergency facilities that would only be used when voluntary palliative home care was no longer feasible. However, this original conceptualisation of the bijna-thuis-huis changed during the twenty-first century. New bijna-thuis-huizen were not always allied to voluntary palliative home care teams and since 2010 member organisations of the VPTZ - the voluntary palliative home care teams and the bijna-thuis-huizen - were taking care of more patients in their intramural facilities than at the patients’ home.890 Secondly, the differences between hospices, bijna-thuis-huizen and units in care homes and nursing homes became better known among the general population. As a consequence, in areas where one of these institutions had been available, there were sometimes demands to extend the range of care offered and establish one of the other types of organisations as well.891 Thirdly, organisations were established that targeted specific groups of patients. For instance, a hospice for people between 16 and 30 years of age opened in Leiden in 2012, and other specialised facilities catered for mentally disabled persons or people with a psychiatric illness.892 Finally, some people mentioned an increased demand for hospices and bijna-thuis- huizen due to changes related to other health care services. When the Wmo was introduced in 2007, for example, it depended on the local authority to what extent night care would be reimbursed for terminally ill patients who were being nursed at home. One of the reasons for the founders of a hospice in Etten-Leur to establish their organisation was the reduction of the funding for night nursing by the local authority when the Wmo was introduced. 893

889 The types of beds included in investigations of the situation in 2004 and 2012 are dissimilar and hence not comparable. In 2012, the number of beds per 100,000 inhabitants was reported to range from 2.1 bed in the province of Flevoland to 7.5 bed in the province of Limburg. The national average was 6,1 bed per 100,000 inhabitants (Middelburg-Hebly, Galesloot, Van Trigt & Jansen- Segers, 2014, p.32). 890 DirectResearch, 2016. 891 Arnoldussen, 2000; Geilenkirchen, 2008; Keunen, 2004. 892 Bol & Meijer, 2014; "Eerste hospice bij Zon & Schild”, 2011 Kreulen, 2011; "Leiden krijgt hospice voor jongvolwassenen”, 2010. 893 Smits, 2007; "Sterfhuis komt in de Poppelaan”, 2007.

204

Governmental Policy after the Policy Programme

When the stimulation programme for palliative care that had run from 1998 ended in 2003, it was not immediately replaced by another policy programme. Many of the initiatives that had been started in the context of this programme were still developing. Moreover, the short periods in power of successive coalition cabinets and parliaments after the 2002 election did result in less political attention for palliative care. However, when Secretary of State Bussemaker came into office in 2007, issues such as the increasing number of services for palliative care and the funding issues experienced by hospices and bijna-thuis-huizen (see Section 6.3 and previous subsection) were raising the political profile of palliative care again. To implement the intentions expressed in her 2007 letter Palliatieve Zorg: De Pioniersfase Voorbij, the Secretary of State presented an action plan for palliative care for the period 2008 to 2010 in April 2008.894 This plan was accompanied by an additional, structural investment in palliative care of €10 million annually. The focus of the action plan was on anchoring, spreading and continuing the implementation of the developments that had started during the previous decade and assuring good palliative care independent of a patient’s disease or location. Three main themes were identified: organisation and funding of palliative care, improvement of quality and transparency of palliative care and education and expertise. More cohesion and cooperation in the field of palliative care, better continuity and coordination of care, and better collaboration between professional and voluntary care givers were aims formulated for the organisation of care.895 In the action plan, Secretary of State Bussemaker stressed that successful implementation of the plans could only take place if the organisations providing palliative care supported them.896 To assist her with the implementation and ‘to avoid that everybody continued to go their own way’,897 the Secretary of State established the Platform Palliatieve Zorg898 (PPZ). Its members were representatives of various organisations in the field of palliative care.899 The PPZ met during the period May 2008

894 In Dutch: Plan van Aanpak Palliatieve Zorg 2008-2010. 895 Kamerstukken II 2007/08, 29509, nr.19. 896 Kamerstukken II 2007/08, 29509, nr.19. 897 Kamerstukken II 2007/08, 29509, nr.19. 898 Platform Palliative Care. 899 Membership of the PPZ consisted of representatives of umbrella organisations in palliative care, the Kenniscentra Palliatieve Zorg (Knowledge Centres Palliative

205 to December 2010 and had working groups on topics such as funding, organisation, quality and education.900 An external organisation evaluated the work and functioning of the PPZ. This evaluation concluded that the action plan had been executed systematically and that the PPZ had facilitated the exchange of information about developments in the field. However, the evaluation questioned the impact the PPZ had had on the care for terminally ill patients. This lack of impact was partly ascribed to the composition of the PPZ, which initially did not include members representing non- specialist palliative care providers such as GPs. Moreover, the organisations that were represented in the PPZ had conflicting missions, visions and interests. As a consequence, the meetings frequently only progressed with difficulty and the members of the PPZ were not able to develop a joint vision on palliative care.901 The combination of the fact that the PPZ had not been the success hoped for and the premature end of the Balkenende IV coalition were reasons why governmental plans for the development of palliative care were initially absent after the end of the action plan in 2010.902 The political turmoil that came with the short-lived Rutte I minority cabinet and the reforms regarding the AWBZ as well as in other fields of society that were initiated by the Rutte II coalition shifted political attention away from palliative care during the years that followed. Moreover, the Secretary of State responsible for palliative care in the Rutte I government, M.L.L.E. Veldhuijzen van Zanten-Hyllner, stated that she was not in favour of singling out palliative care as a special field of health care.903 Additionally, VWS seemed to be unsure about the direction it wanted to head in regarding palliative care. Several questions were raised and reports published about, for instance, the support structure for palliative care by the networks for

Care), the umbrella organisation of health care insurers, and VWS (Kamerstukken II 2007/08, 29509, nr.19). 900 Platform Palliatieve Zorg, 2009a, p.2; Platform Palliatieve Zorg, 2011; Handelingen II 2007/08, 101; Kamerstukken II 2009/10, 29509, nr.28. 901 "Laatste kans”, 2011; "Pleidooi voor meer regie in palliatieve zorg”, 2011; Poortvliet, Vennekens & Heine, 2011, pp.25-29; Kamerstukken II 2009/10, 29509, nr.27; Kamerstukken II 2009/10, 29509, nr.28. 902 Kamerstukken II 2009/10, 29509, nr.28; Kamerstukken II 2009/10, 29509, nr.29; Kamerstukken II 2010/11, 29509, nr.34; Kamerstukken II 2010/11, 29509, nr.44. 903 "Laatste kans”, 2011. Veldhuijzen van Zanten-Hyllner’s position deviated clearly from her predecessors’ point of view. This can probably be explained by her background as a nursing home physician (Parlement & Politiek: Drs. M.L.L.E. (Marlies) Veldhuijzen van Zanten-Hyllner. http://www.parlement.com/id/vijdmkvn4uz 4/m_l_l_e_marlies_veldhuijzen_van_zanten. Accessed 18 December 2016).

206 palliative care and the role of the comprehensive cancer centres.904 In spring 2013, after the fall of the Rutte I government, the coalition parties had to negotiate with opposition parties about a set of reforms to reduce the budget deficit, because the norms for maximum budget deficits allowed by the EU were exceeded. One of the parties involved in these meetings was the CU, which negotiated an additional investment in palliative care of €8.5 million in exchange for its support of the other measures.905 These resources were being used to implement a Nationaal Programma Palliatieve Zorg906 during the period 2015 to 2020. This programme had a strong focus on knowledge development and dissemination. To achieve this aim, consortia of palliative care networks that were connected to a palliative care centre at a university hospital were to be established.907 This was one of the measures being implemented at the moment this thesis was finalised.908 Given their recent start, I have no insight into the results of these initiatives. Parliamentary debates about palliative care, however, were dominated by the difficulties that arose for hospices due to the changed arrangements for health care funding described in the previous section.909

6.5 Comparative Reflections and Conclusions

Service Development

As mentioned at the end of Chapter 5, by the mid 1990s all models for palliative care delivery had been developed, but the number of these organisations was still rather

904 For example: Blijham & Vissers, 2010; Kerngroep Palliatieve Zorg, 2012; Nederlandse Federatie van Universitaire Medische Centra, 2013; Teunissen, Vissers, Van Tol, Fiouw, Grevenstuk, Van Rijswijk, Rhebergen, Hoefsmit & Roelands, 2011. For an overview see: Middelburg-Hebly, Galesloot, Van Trigt & Jansen-Segers, 2014, pp.100-105. 905 "Kabinet geeft impuls aan palliatieve zorg”, 2013. 906 National Programme Palliative Care. 907 Kamerstukken II 2014/15, 29509, nr.48. 908 Van der Eerden, Hasselaar, Ebenau & Groot, 2016. 909 "Kamer vraagt naar staat palliatieve zorg”, 2014; Kamerstukken II 2014/15, 29509, nr.50.

207 limited in the Netherlands. During the period covered in this chapter, the number of intramural services for palliative care rose quickly. Although governmental policy had expressed a preference for developing these services as part of already existing health care providers, such as care homes, nursing homes and hospitals, especially the hospices and bijna-thuis-huizen grew rapidly in number. With regard to the nursing homes, it is notable that they never came to be as central to the care of terminally ill patients who were not residing in the nursing home as had been envisaged in some advisory reports during the 1980s and early 1990s. However, the move from the AWBZ to the Wlz in 2015 may well result in a reconsideration of the role of the nursing home within the broader spectrum of palliative care. Admission criteria for nursing homes did become stricter and therefore the people who were still admitted to nursing homes did this during a later stage of their infirmity. As a consequence, the average length of stays in nursing homes has been declining.910 From around one and a half years on average a couple of years ago, this number has been going down to around four to eight months.911 Some authors who noticed this development did argue that nursing homes and hospices are growing more similar.912 This observation was generally followed by an appeal to ensure that the residents of nursing homes could expect care of standards similar to those achieved in hospices.913 If we compare the discussions about the development of palliative care services in the Netherlands to those in England, we can see that both countries were trying to make palliative care available to all patients who required it, independent of the place where they were being cared for. I have shown in Section 2.7 that English hospices are starting to consider less medical models for the delivery of palliative care in the form of the establishment of cottage hospices. These organisations could be said to share important characteristics, such as their rootedness in the local community, the central position of volunteers, and their focus on nursing rather than medicine, with the Dutch bijna-thuis-huizen. In the Netherlands, however, discussions have been taking place whether the generalist model of palliative care as advocated by the government was still satisfactory. In contrast to England, for example, palliative medicine has not become a medical specialism until the moment of writing this text and plans to achieve this do

910 Kuiken & Pronk, 2016b; Kuiken & Pronk, 2016a; "Verpleeghuiszorg te complex”, 2016; "Zorg en toewijding”, 2016. 911 Kuiken, 2016. 912 De Vries, 2015; De Vries, 2016a. 913 "Haal verpleegkundige en melkboer terug”, 2016; Wiegman-van Meppelen Scheppink, 2016.

208 not exist. In 2015, the generalist model was heavily criticised in a research report published by the National Comprehensive Cancer Centre.914 The authors argued that a lack of attention for palliative care in medical education and training of specialists existed as courses on palliative care were too often optional. GPs were considered the positive exception to this general claim, but the authors argued that good quality generalist palliative care could not be guaranteed in the current nationwide organisation of palliative care with consultation services, networks and centres of expertise. The main reason for this shortcoming was that the various roles had never been sufficiently defined in terms of, for example, education and task division. According to these authors this resulted in a situation in which palliative care in the Netherlands was ‘everybody’s and therefore nobody’s’.915 Based on experiences in neighbouring countries, these authors urged for the reconsideration of the idea that a medical specialty for palliative care would not be necessary. They suggested that generalist palliative care had to be strengthened and specialist palliative care developed. However, concrete proposals on how to achieve this were not presented. Specialist palliative care would not only be required to improve patient care, but would also have advantages for the development of guidelines, indicators and treatment standards, and it could foster scientific research in the field of palliative care.916 Based on these findings we can conclude that neither of the countries studied in this thesis considered its current model of palliative care provision ideal. In Section 7.3, I will elaborate on the policy implications of this finding.

Impact of Policy

If we compare the impact of governmental policies in England and the Netherlands, the similarities between the two countries investigated dominate. This chapter showed that the Dutch government implemented a policy programme to further the development of palliative care from 1998. Most of the elements included in this plan were implemented, but the integration of the hospices and bijna-thuis-huizen within the existing health care system was not achieved. More importantly, these types of organisations proliferated during the first decade of the twenty-first century. Once these organisations had been in operation for a while, they increasingly experienced

914 Integraal Kankercentrum Nederland (IKNL). 915 Boddaert, Douma, Van Aalst, Bijkerk, Brinkman, Brom & Degenaar, 2015, p.7. 916 Boddaert, Douma, Van Aalst, Bijkerk, Brinkman, Brom & Degenaar, 2015, p.7.

209 financial difficulties and pressure on the government to provide more public funding for these organisations built. This dynamic closely resembles the developments in England during the 1980s. Although the 1980 Wilkes Report warned against the proliferation of independent hospices, voluntary organisations established these services and the call for structural NHS funding was answered by the government in 1989. The consequences of these expanded entitlements to health care funding have, however, been somewhat paradoxical. In Chapter 2, I showed that the English hospices maintained their independent status, but came to be closely connected to the NHS with regard to issues such as accountability and quality assurance. Nevertheless, the share of their total income that came from the NHS has consistently been below 50 percent, and was often below a third of their income. In contrast to the English hospices, hospices and bijna-thuis-huizen in the Netherlands have generally managed to maintain a larger degree of freedom to act as they pleased, whereas the percentage of their costs covered by general health care funding arrangements has been significantly higher.917 The most likely explanations for this paradox can be found in the comparatively small size of the Dutch hospices and bijna-thuis-huizen and differences between the health care systems in the two countries. As mentioned in Chapter 3, the majority of the health care providers in the Netherlands are non- governmental, non-profit organisations that function within the regulatory context set by the government. Some remarks can also be made about the finding that governmental policies related to palliative care took the form of policy programmes in both countries from the mid 1990s. In England, plans to improve palliative care were initially embedded in cancer policy plans, but in 2008 the End of Life Care Strategy was dedicated to palliative care in a range of settings and for patients suffering from a variety of diseases. In the Netherlands, palliative care has had its own policy programmes - albeit at some intervals - since the policy programme of 1998. Whereas policy programmes became widespread in England since 2000,918 they remained rather uncommon in the Netherlands. These palliative care policy programmes, nevertheless, shared some of

917 Numbers differ for the different types of organisations, but in general it can be stated that at least 80 percent of the running costs are covered from public sources (DirectResearch, 2016; Van Reuler, 2007). 918 As shown in Section 2.7, the 2000 NHS Cancer Plan was succeeded by several new cancer policies. Moreover, it inspired the establishment of similar programmes under the name of National Service Frameworks for a range of afflictions (The National Archives: National service frameworks and strategies. http://webarchive.nationalarchives.gov.uk/20130718121128/http://endoflifecar e.nhs.uk. Accessed 7 December 2016).

210 the reasons why they were established. Especially when problems were perceived and the government wanted to be seen to be taking action, policy programmes were a popular option and fulfilled, to a certain extent, a symbolic function. They were also helpful as a way to create momentum and gather the people and organisations who could contribute to resolving the issues identified. However, these policy programmes do also tell a story about developing this relatively new branch within the health care sector and the misfit that sometimes existed between palliative care services and general health care policy. In a certain sense, the increasingly complex health care system and health care reforms were negotiated through these health care subfield specific policies to prevent or resolve undesirable consequences for the organisations delivering palliative care. From the Dutch experience, it can be concluded that palliative care seemed to require such policy programmes even more than other health care sectors. The central position of volunteers and voluntary organisations as well as their relatively recent emergence contributed to this development.

Euthanasia and its Impact on the Development of Palliative Care

The Dutch developments related to euthanasia and their impact on palliative care do not have a parallel in England, where the situation was rather stable during the time period covered in this thesis. With regard to the Netherlands, I have argued in this chapter that the expected legalisation of euthanasia formed a major impetus for the development of the first policy programme on palliative care. This finding provides another argument to claim that the quotes provided at the start of Section 4.4 do not adequately represent the developments in the Netherlands. Moreover, I have shown that the debates about euthanasia became less polarised when the Minister of Health explicitly presented euthanasia as a possible final stage of good palliative care instead of depicting either of the two as a replacement for the other. A question that has not yet been addressed is whether these improvements of palliative care impacted on the incidence of euthanasia. This question cannot be answered adequately in terms of figures. Since 1990, roughly every 5 years a survey has been carried out on end of life decisions, including euthanasia, by medical doctors. The first edition of the survey after the legalisation of euthanasia, which was conducted in 2005, indicated that the number of euthanasia requests complied with was declining. Some people attributed this finding to a better availability and higher quality of palliative care. However, the 2010 edition of the research showed that this number

211 had been increasing again and now surpassed the numbers reported for 1995 and 2001.919 However, the majority of the medical doctors surveyed, around 70 percent, claimed not to have changed their views on euthanasia when palliative care became more accessible. The others said to have become more restrictive in their willingness to comply with a euthanasia requests of their patients.920 Additionally, some medical doctors expressed views along the lines that if they had known then what they knew now about palliative care, they would have complied with fewer euthanasia requests in the past.921 Some of them thought that the focus in societal and political debate on the wish to establish a legal basis for euthanasia, created a blind spot for alternatives, including palliative care.922 These findings illustrate that not only the quotes in Section 4.4, but also people who claim that the focus on legalising euthanasia during the 1970s and 1980 had no negative impact on the palliative care provided in the Netherlands, do not represent the developments in the Netherlands in their entirety. This theme is further reflected upon in Section 7.3.

919 Van der Heide, Brinkman-Stoppelenburg, Van Delden & Onwuteaka-Philipsen, 2012. 920 Onwuteaka-Philipsen, Van der Heide, Koper, Keij-Deerenberg, Rietjens, Rurup, Vrakking, Georges, Muller, Van der Wal & Van der Maas, 2003; Oostveen, 2003. 921 Noordhuis, 2009; Oostveen, 2001. 922 Oostveen, 2001.

212

Chapter 7

Conclusions

7.1 Introduction

This thesis is a volume of contemporary history. The analysis has to end, but in Chapters 2 and 6 we saw that developments related to services and policies for palliative care are still ongoing in both countries investigated. Hence, it is likely that the wish to improve care for the dying will continue to feature on the policy agenda. I discuss examples of the policy implications of this thesis in Section 7.3. Firstly, however, the main findings on the development of palliative care services, and the impact of governmental policies and euthanasia on these developments will be summarised in Section 7.2. The concluding sections of Chapters 4, 5, and 6 already included comparisons between the Dutch developments analysed in these chapters and the situation as it had emerged in England. Therefore, the discussion in this final chapter will have a different approach. The central question addressed here is to what extent the English situation was a model for the developments in the Netherlands. In the final section of this chapter, Section 7.4, some suggestions for further research on the histories of palliative care services and policies as well as health care subfield specific policies will be presented.

7.2 Comparative Observations

Introduction

As discussed in Chapter 1, this thesis was set up as an asymmetrical comparison, with the developments in England considered the standard to which to compare the Dutch situation. This is in line with the widely acknowledged status of England as the country where the hospice movement originated. In the following subsections, I will compare

213 the main developments with regard to palliative care services, policies and euthanasia in England and the Netherlands and address reasons for the differences identified.

Palliative Care Services

As elaborated on in Section 1.2, some authors argue that palliative care developed late in the Netherlands, because the first hospices were only established during the 1990s. Indeed, institutions that were similar to the English hospices developed at this time, but in Chapters 4 and 5, I argued that existing services, especially the nursing homes, were a major reason why the need to establish hospices was not felt in the Netherlands during the 1960s and 1970s. With regard to the nursing homes, I showed that they shared some characteristics with the English hospices, but the differences in the functions and organisation of these two types of institutions were too substantial to claim that the nursing homes were the Dutch equivalent of the English hospices. During the 1980s, palliative care services provided by volunteers in voluntary palliative home care teams and bijna-thuis-huizen were added to the spectrum of palliative care available in the Netherlands. The people involved in these initiatives had visited St. Christopher’s Hospice and other English hospices, but decided - after careful deliberation - to develop a model of palliative care in which home care and volunteers had a more central position than in the English hospices. The smaller size of the bijna- thuis-huizen was also a consequence of practical considerations, because governmental regulation would have made establishing a larger intramural institution substantially more complicated. During the 1990s, on the one hand, the Netherlands saw the establishment of high care hospices that were closer to the model developed in England. However, also in this case, adaptations were made to fit the Dutch circumstances. This meant, for instance, that these high care hospices would generally collaborate with existing home care services rather than developing their own as the English hospices had done, and day care units were not established in the Netherlands. On the other hand, the development of specific Dutch models of palliative care continued during the 1990s as well. The units that were established in care homes and nursing homes provide an example. The initial plan of the CHN had been to transfer the English hospice model to the Netherlands, but funding constraints and the rejection of this model by WVC resulted in the recognition of the establishment of units in care homes as a viable alternative.

214

This rejection of the English hospice model by WVC played an important role in the development of palliative care in the Netherlands, because governmental policies aimed to develop palliative care as a generalism rather than a specialism. This is in clear contrast to the developments in England, where palliative care was rather quickly recognised as a medical specialty, and the care provided in the hospices moved into a medical direction. As such, we could consider the two countries studied in this thesis as opposites on a spectrum of palliative care models. However, developments during the past decade point at a convergence of the service models available in the two countries. The English specialist model cannot do without generalist provision of palliative care to cater for all dying patients instead of only those cared for by a hospice. In the Netherlands, functions that are carried out in England by the larger hospices, such as education and research, are not well developed yet. Many hospices and bijna-thuis-huizen are too small to contribute substantially to these tasks. Therefore, university hospitals are currently trying to develop this function in centres of expertise for palliative care. A consequence of these developments is that none of the organisations involved in palliative care in the Netherlands fulfils the function of a hub as the hospices in England do. I discuss the policy implications of these differences in the trajectories followed in the two countries in Section 7.3.

Policies on Palliative Care

Whereas the hospices in England were internationally regarded as the model for palliative care to take inspiration from, the governmental policies in this country never achieved a similar status. Nevertheless, it can be concluded that the developments in England and the Netherlands show a remarkable degree of similarity. In Chapter 2, I argued that during the initial stages of the development of the English hospice movement connections with the DHSS were rather informal, but resulted in funding arrangements between the hospices and the NHS. Although the DHSS did not take a clear stance as to whether the establishment of hospices was desirable and how these organisations would fit within the existing NHS structures, the general stance towards initiatives by hospices to improve care for the dying was more supportive than in the Netherlands. The main evidence provided for this interpretation was the rejection of the grant applications for two projects on terminal care by foundations in Rotterdam and Amsterdam, which was discussed in Chapter 4. Although at different points in time, both countries went through a period during which

215 the government did not want to support the establishment of independent intramural providers of palliative care. In England, this period started with the publication of the Wilkes Report in 1980, whereas this issue emerged on the political agenda in the Netherlands when the first high care hospices were established during the 1990s. However, in both countries the proliferation of hospices, and for the Netherlands bijna- thuis-huizen, and reports on the difficulties these organisations experienced to cover their running costs resulted in an increasing pressure on the government to make public funding available. Over time, it became accepted in both countries that voluntary sector providers of palliative care delivered services that were highly valued by the public. As a result, it was no longer an issue of debate whether these organisations had to receive public funding. In England as well as in the Netherlands, this resulted in public funding being made available for independent providers of palliative care. However, both countries were recently discussing the allocation mechanisms that could be used to ensure reasonable tariffs for the various providers of palliative care. No model that warrants adoption by other countries has yet been developed though. In Chapter 6, I argued that the consequences of these increases of public funding were somewhat paradoxical, as the English hospices received a smaller share of their income from the NHS than the Dutch specialist providers of palliative care obtained through the health care system. However, the English hospices developed a close relationship with the NHS, whereas the Dutch providers of palliative care managed to maintain a higher degree of autonomy. Explanations offered for this finding included the fact that English hospices had a more medical character than most palliative care providers in the Netherlands. Moreover, the structure of the Dutch health care system, in which most other care providers are also non-governmental, non-profit organisations, played a role. However, in both countries it could be observed that the public funding and the connection to the health care system that came with it, resulted in a situation in which changes of health care policies could result in unforeseen and undesirable consequences for hospices and other independent palliative care providers. If we look at the most recent palliative care related policy developments, we can conclude that both governments shared the aim to make palliative care available to all patients who might benefit from it at all places where they might be staying. To implement these ideas both governments developed palliative care policy programmes. However, the differences in the historical development of palliative care in the two countries meant that other measures had to be taken. Whereas England was mainly trying to extend palliative care to other care settings, a major issue in the Netherlands

216 was how the provision of more specialised functions, such as research and education, could be fulfilled. In the following section the impact of these past trajectories on the development of integrated palliative care will be discussed.

Impact of Euthanasia on the Development of Palliative Care

If we compare the impact of euthanasia on the development of palliative care services, the differences between the two countries clearly dominate this comparison. As I argued in Chapter 2, in England the hospices had more impact on the development of the euthanasia debate than the other way around. Most of the pioneers of palliative care rejected euthanasia categorically and considered it superfluous, because medical practitioners should be able to make any pain bearable for patients through medication. R. Lamerton, who worked as a doctor at St. Joseph’s Hospice in London, formulated this as follows:

Of course I don’t advocate keeping people alive artificially when they are at the end of a terminal illness, but neither is it ever necessary to kill anyone. A patient who is begging to die has lousy doctors and nurses, that’s all.923

The hospice movement actively disseminated this message - though generally selecting less provocative phrasing - and was able to influence the public and political debate on this issue. A major difference with the situation in the Netherlands was that the main argument used to advocate euthanasia was not related to pain, but to the autonomy of patients. This was also the reason why improving care of the dying and euthanasia were initially seen as independent topics. This changed when euthanasia was legalised in practice through case law. In Chapter 5, I argued that the people establishing high care hospices and units in care homes explicitly considered offering an alternative to euthanasia part of their mission and most of them rejected euthanasia as a matter of principle. The Dutch case, however, also showed that the expected formal legalisation of euthanasia formed an impetus for the government to improve the availability of palliative care from the mid 1990s. The argument underlying this development was that nobody would have to request euthanasia because the care received was unsatisfactory. Policy lessons that might be drawn from this rather complex influence

923 Lamerton, 1986, pp.78-79.

217 of the euthanasia debate on the development of palliative care in the Netherlands are a topic of Section 7.3.

7.3 Policy Implications

Introduction

Rothman and Wheeler, mentioned, 35 years ago, that the translation of historical studies for policy audiences was a complex endeavour.924 In January 2016, a Dutch equivalent of the British History & Policy initiative named ‘Geschiedenis en Actualiteit’925 was launched during a symposium.926 From the discussions during this meeting, it became clear that the issue of translating the findings of historical scholarship for those in the world of policy had not yet been resolved or addressed extensively. The aversion of historians to reductionism was put forward as main reason for this deficit.927 In this section, I will ignore this aversion and provide three brief examples of the policy relevance of the analysis of palliative care services and policies presented in this thesis. However, a thesis is probably one of the least suitable places to claim the policy relevance of a historical study. Clearly, it would be preferable to contribute directly to policymaking. Moreover, working on a concrete policy problem would make determining the policy relevance of a history easier, because the relevance of a specific history to policy depends on the questions posed and the context in which they are raised. I selected the three examples discussed in the following subsections out of the many possible illustrations, to cover the three main themes - palliative care services, governmental policies, and the impact of euthanasia - addressed in the empirical chapters. Moreover, each of the examples highlights a different approach to making historical analyses relevant to policy. In the first subsection, I compare the trajectories

924 Rothman & Wheeler, 1981. 925 History and current affairs. 926 Historici.nl: Geschiedenis & Actualiteit. https://www.historici.nl/geschiedenis- en-actualiteit. Accessed 30 January 2016. 927 See also: Kelley, 1988a.

218 of the development of palliative care services in England and the Netherlands and their implications for the implementation of integrated palliative care. The question whether the development of new policy programmes for palliative care is desirable when the current policy programmes come to an end is addressed in the subsection that follows, making use of a historical analogy.928 The final example illustrates the benefits of moving away from a ‘snapshot’ view of the world by taking a long term perspective on the development of the relationship between the euthanasia debate and palliative care in the Netherlands. If we relate these three approaches to the discussion on the relevance of history for policy provided in Section 1.2, we can see that the analogy is closest to the approach suggested by Donaldson, whereas the first and the third example have more in common with Rosenberg’s argument. Moreover, the second and the third example are in line with the first two ways of incorporating history in decision-making processes suggested by Neustadt & May.

Service Development: An International Comparison of Trajectories

In the foreword to a recent publication on integrated palliative care, the EAPC’s president, P. Larkin, wrote:

The next 20 years for palliative and end-of-life care will be very different to what has gone before. Understanding the value of what integration of care can bring to patients and families is the new horizon for our discipline.929

Moreover, in May 2014, the World Health Assembly passed a resolution that urged the member states to ensure that palliative care was integrated within their health care systems.930 In the previous chapters, I have shown that England and the Netherlands are both trying to integrate palliative care in their health care systems. The analysis illustrated that these countries have different vantage points because of the types of palliative care services that were developed by the voluntary sector and the policies implemented. England was the country where modern hospices originated and developed into specialised hubs for palliative care. The larger hospices cared for patients, but provided opportunities for research and education as well. Although the

928 For discussions of learning policy lessons from analogies see: Boele, Van Dixhoorn & Van Houwelingen, 2015; Rose, 2005, pp.42-47. 929 Larkin, 2016, p.6. 930 World Health Assembly, 2014.

219

Wilkes Report had already cautioned against the proliferation of hospices in 1980, an active governmental policy to integrate palliative care into other health services emerged 20 years later, first with the 2000 NHS Cancer Plan and later with the 2008 End of Life Care Strategy. In the Netherlands, early initiatives to improve care for the dying took place within nursing homes and home care. Moreover, the government did not want palliative care to develop as a specialism and supported palliative care related initiatives by already existing health care providers. As a result of these past developments, the challenges currently experienced in the two countries mirror each other to a certain extent. In England, less specialised and medicalised palliative care services are developing in the form of cottage hospices and initiatives are being taken to improve palliative care at all places where patients may be dying. In the Netherlands, the percentage of home deaths is among the highest in Europe, but facilities for research and education on palliative care are at early stages of their development.931 I concluded in Chapter 6 that the situation in neither country is considered ideal. Therefore, a policy implication of this thesis, which is probably most relevant to other countries, is that the development of generalist as well as specialist palliative care services is desirable if good care for the dying is to be provided. Although current policies in the two countries share their major aims, the measures that need to be taken to achieve these aims differ as a result of the historical developments. England and the Netherlands could take inspiration from each other, but a direct transfer of models of care is unlikely to be possible. In the 1970s and 1980s, a visit to St. Christopher’s Hospice seemed almost obligatory for anybody who wanted to do anything related to palliative care. However, some people claimed that the Netherlands became an exemplar for integrated palliative care for people who were dying from non-malignant diseases or wanted to die at home.932 Although the Dutch palliative care services did indeed attract some interest from people from other countries, it certainly did not achieve a worldwide status similar to that of the English hospices. Recent publications illustrate that best practices for integrated palliative care can be identified in various countries.933 Hence, people looking for inspiration have a wider range of places to choose from than during previous decades. However, a direct transfer of a best practice from another country

931 Van Soest, 2015. 932 Baar, 1998a, p.72; Bruntink, 2001a, p.27; Platform Palliatieve Zorg, 2009b; Swart, 2008. 933 Hasselaar & Payne, 2016.

220 is, as I highlighted above for England and the Netherlands, probably even less of an option than during the 1970s and 1980s, because most countries already have some palliative care services in place.

Policies and Specialist Providers of Palliative Care: An Analogy

When the End of Life Care Strategy and the Nationaal Programma Palliatieve Zorg come to an end, policymakers in England and the Netherlands will have to consider whether they want to develop successors for these programmes. If we look at the past developments, analogical reasoning provides evidence that this is likely to be advisable. I have shown in this thesis that health care policies could have unforeseen and undesirable consequences for independent providers of palliative care, such as hospices and bijna-thuis-huizen. Moreover, these services often did not fit completely within the health care system and wanted to maintain their charitable status to be free to develop their services as they considered desirable. Changing rules due to health care reforms and the increasing complexity of the health care systems that surround independent organisations providing palliative care were among the reasons behind the problems discussed. One of the functions of palliative care policy programmes was to negate these adverse consequences of health care policies for the independent palliative care providers. These causes of the complex relationship between specialist palliative care providers and the health care system and its policies are unlikely to diminish in the near future. So, my assessment is that policymakers have two main choices. On the one hand, they could opt to ensure that the specific needs of independent providers of palliative care are always considered when developing health care policies. This may require palliative care specific arrangements to be included in general health care policies. Moreover, palliative care specific guidance for health commissioning bodies - the CCGs in England and the health insurers in the Netherlands - will be required. Given the specific characteristics of palliative care, it may also be desirable to develop some procedures to deal with unforeseen consequences if they emerge to ensure that adjustments can be made as soon as problems are observed. On the other hand, policymakers may decide to develop new palliative care programmes to reduce the adverse impact of general health care policies on the specialist providers of palliative care without complicating general health care policies with palliative care specific arrangements. As

221 other health care subfields might advocate having terms specific to their needs included in general health care policies as well, I expect that the continued use of palliative care policy programmes will be the preferred option. Moreover, these programmes have the additional advantage of offering opportunities to influence the development of a health care subfield that is still at an earlier stage of its development than other branches of the health care system.

Euthanasia and Palliative Care: Beyond the Snapshot

In 2011, the EAPC published a report comparing the availability of palliative care and whether euthanasia or assisted suicide had been legalised in seven European countries.934 It found that palliative care in Belgium, the Netherlands, and Switzerland - the three countries where euthanasia or assisted suicide was legal - was of comparable standards to the four other countries. Moreover, evidence of advancement of palliative care after the legalisation of euthanasia or assisted suicide was found in these countries. Therefore, the authors concluded:

The idea that legalisation of euthanasia and/ or assisted suicide might obstruct or halt palliative care development thus seems unwarranted and is only expressed in commentaries rather than demonstrated by empirical evidence.935

In their conclusion, the authors pointed at the fact that these developments had only taken place less than ten years ago and considered the possibility that consequences of legalisation of euthanasia or assisted suicide might only become apparent after a longer period of time.936 However, these authors did not address that their analysis was as much a snapshot in relation to the past as it might turn out to be for the future. In Chapters 4, 5 and 6 of this thesis, I showed that the relationship between euthanasia and palliative care in the Netherlands changed significantly over time. Initially, the two issues were considered separate topics, and the impact of the euthanasia debate on palliative care was limited. However, once the euthanasia discussion became a predominant legal and

934 The countries included in this study were Belgium, France, Germany, the Netherlands, Spain, Switzerland, and the United Kingdom. 935 Chambraere, Centeno, Hernández, Van Wesemael, Guillén-Grima, Deliens & Payne, 2011, p.19. 936 Chambraere, Centeno, Hernández, Van Wesemael, Guillén-Grima, Deliens & Payne, 2011, p.19.

222 ethical discussion, it might have shifted the debate away from providing good care for the dying. Nevertheless, initiatives to improve care for the dying continued to develop, but the people involved in these services did not present their initiatives as an attempt to offer an alternative to euthanasia. This changed when high care hospices and units in care homes were established during the early 1990s, because these were presented as alternatives to the euthanasia practice as it had been established in case law, which was rejected as a matter of principle by the people involved in creating these organisations. The relationship between euthanasia and the development of palliative care changed again during the second half of the 1990s. By that time the government was preparing the legalisation of euthanasia and the Minister of Health established a policy programme to facilitate the further development of palliative care. The Minister also explicitly defined palliative care and euthanasia as entities that were not mutually exclusive. The evidence presented in this thesis does not question the state of affairs with regard to the development of palliative care in the Netherlands as described in the EAPC report. However, I would argue that the developments in the Netherlands over time were more complex than could have been concluded from the quantitatively oriented study conducted on behalf of the EAPC. This historical perspective can inform current debates on euthanasia in at least two ways. Firstly, countries considering the legalisation of euthanasia could look at the development of palliative care in their own country and identify opportunities for improvements that have to be implemented before legalisation can take place. From this perspective, the Dutch case seems to set a good example with the policy programme the government initiated in 1998. However, the de facto legalisation had already taken place through court cases during the previous decade. Countries where courts are moving in similar directions, and where the provision of palliative care is still suboptimal, might learn from the Dutch case that the government could have considered the question whether policy could contribute to improving palliative care earlier. Secondly, the Netherlands themselves might also learn a lesson from these developments. In 2011, a petition put the issue of elderly people who want support to terminate their life because they consider it completed, on the political agenda.937 In 2016, a governmental policy letter as well as a bill prepared by a D66 MP were proposing to make such support legal if certain conditions are fulfilled.938 As in the euthanasia debates, the autonomy of an individual

937 Peeters & Sutorius, 2011. 938 A committee appointed by the government had prepared an advisory report

223 is presented as the major argument in favour of the proposals. Opponents of the change, however, point at insufficiencies in the care available for the elderly. This is not the place to elaborate on the details of these recent developments, but I think the historical analysis presented in this thesis warns against narrowing down this debate to predominantly legal considerations and provides an argument not to legalise assisted suicide for this target group without considering possibilities to improve the care and support available to them.

7.4 Further Research

Further Research on Palliative Care Services

Two main categories for further research on the development of palliative care services exist. One the one hand, researchers can decide to zoom in on an aspect of the work presented in this thesis. This might, for example, mean that more attention is paid to the minutiae of a particular decision making process. It could also mean moving to the level of the discussions within umbrella organisations or individual organisations providing palliative care. In such cases, an extension of the source base used would be advisable as these topics will likely benefit from oral history interviews or witness seminars in addition to archival research and the analysis of published sources. Especially for the Netherlands, given the limited attention paid to palliative care by historians so far, this is likely to be fruitful. One the other hand, one may wish to broaden the research on palliative care services. This could be done in various ways. For example, the researcher could address questions about the relationship with other developments in health and social care in the countries studied. In which way, for example, did the dissimilarities in the development of fields such as geriatrics and pain medicine impact on care for the dying in the two countries? To understand the intricacies of such configurations and to formulate answers to such questions, histories that include a relatively long time period will be required.

on this issue between 2014 and 2016 (Schnabel, Meyboom-de Jong, Schudel, Cleiren, Mevis, Verkerk, Van der Heide, Hesselmann & Stultiëns, 2016). This is one of the reasons for the time gap between the petition and the policy letter.

224

Another way of extending the analysis would be to trace the impact of advisory reports, recommendations and policies on care for the dying by international organisations. Although such documents were published, their impact on agenda setting and decision making in England and the Netherlands appeared limited.939 The WHO recommendations that led to the Wilkes Report were the most notable exception. These WHO recommendations were known in the Netherlands and resulted in policy deliberations on cancer care. Care for those dying of cancer was not absent in these discussions, but this issue did not rise to a similar level of prominence on the policy agenda as it did in England, and specific advisory reports or policy documents were not published.940 However, this representation might have been a bias introduced by the fact that I used a national primary source base. It could be the case that, for instance, meeting notes of committees of international organisations provide an alternative perspective or offer explanations why the impact of the recommendations in a particular country was limited. A final direction in which to enrich this study would be to develop comparisons in which more countries are included. It could, for example, be interesting to research the developments in Spain or Sweden as these countries were reported to have integrated palliative care fully within their existing health care systems and would thus present a configuration that is different from the English as well as the Dutch case.941 Alternatively, the United States could make for a relevant comparator. It has been shown that palliative care in this country, like in the Netherlands, was driven by volunteers who developed and delivered home care-based programmes.942 Therefore, an interesting question would be whether the need to start developing palliative care as a specialism arose in the United States as well.

939 See for example: Clark & Centeno, 2006; Economist Intelligence Unit, 2010; European Public Health Committee, 1981; Stjernswärd, Colleau & Ventafridda, 1996; Vitillo & Puchalski, 2014; World Health Organisation, 1990; World Health Organization, 1996. 940 Cleton & Coebergh, 1988. 941 Janssens, 2000, p.16. 942 Beresford & Connor, 1999; Buck, 2004; Buck, 2014; Lewis, 2007.

225

Further Research on Health Policy Subfields

In the first chapter, it was claimed that this thesis could contribute to the field of policy studies by its investigation of subfield specific policies for palliative care. The thesis showed that interesting differences in the development over time between palliative care policies and health care policies as well as conflicting impacts on palliative care existed. Therefore, a logical thought would be to recommend further research that incorporates additional health care policy subfields. However, doing this in the context of a comparative, historical analysis comes with certain challenges. I will briefly illustrate the promises and perils of such an approach by using the example of cancer services and policies and will suggest an approach for further research in this subsection.943 Baldwin argues that the state does not behave as uniformly as often assumed by binary classifications of the state, such as strong states versus weak states. Consequentially, he claims that attention should be paid to different branches of governmental policy.944 I expect that such an argument also holds for the various subfields in health care policy. This idea could be investigated by including additional health care policy subfields, such as cancer care, in a future study. Based on the work I conducted previously, it appears to be justified to state that each of these health care subfields have their own dynamics. Therefore, such research would provide an opportunity to see why closely related - often even entangled - policy subfields have developed differently. In Section 1.4, I showed that doing comparative history poses certain challenges. Creating a study design in which two policy subfields in two countries are compared over time is certainly not going to reduce them. Moreover, cancer services and policies have a longer history than the modern hospice movement. In England, for example, the Minister of Health appointed a Cancer Departmental Committee in 1922 and in 1939 a Cancer Act was accepted.945 In the Netherlands, debates about the organisation for cancer care became significant only after the Second World War, but also in this

943 This choice was inspired by the research I conducted for my MSc dissertation on cancer hospitals and policies in England and the Netherlands (Van Reuler, 2008). Moreover, cancer would actually be an interesting addition, because it has been regarded as the disease emblematic for the twentieth century and - as we have seen - it has close ties to palliative care in terms of patient population as well as policies. 944 Baldwin, 2005a. 945 TNA: MH 55/33; TNA: MH 55/43; TNA: MH 55/580.

226 country we see a succession of various initiatives, partly driven by civil society and partly initiated by the government. Moreover, the various treatment modalities for cancer would complicate the analysis, because at certain points in time they had different impacts on the preferences for the organisation of care. The costs of radiotherapy equipment, for instance, were already a reason to centralise treatment during the first half of the twentieth century.946 However, more recently, the number of patients seen for surgery by a medical specialist and the impact this has on the quality of the treatment provided, has become an important argument to centralise cancer treatment. As a consequence, although service development in terms of the establishment of completely new institutions will play less of a role than for palliative care, the policy initiatives for cancer are more numerous. In the Chapters 2, 4, 5 and 6, we saw that the developments in England and the Netherlands related to palliative care took place at different points in time. Adding the developments regarding cancer services and policies would make telling these stories in a truly comparative way probably impossible. Do we have to conclude that the historical method is unlikely to be able to deal with the degree of complexity resulting from the inclusion of various cases? Should historians leave such investigations to comparative historical social scientists?947 I would answer this question in the negative and will suggest an approach that appears promising to me in the final paragraphs. A full historical analysis could be conducted for each of the four cases. Although the two policy fields were at times interconnected, the four cases might or analytic purposes best be reported in separate narratives. This relationship can be imagined as a waterfall with four streams, two to the left and two to the right. Each of the pairs of streams represents one of the countries. For each of the countries, the two streams, representing cancer and palliation, merge at several points to separate again afterwards. In addition to historical comparisons similar to the ones offered in the concluding sections to Chapters 4, 5 and 6 of this thesis, I would suggest a further layer of analysis to gain more insight into the position of subfield specific health policies. To continue the waterfall analogy, we might think of the basin of the waterfall where all four streams come together. This offers new possibilities for analysis. A potential approach would be to take a step back from the detailed histories and see whether any

946 See for the Netherlands: Gezondheidsraad, 1984b; Gezondheidsraad, 1984a; Gezondheidsraad, 2008; Minister van Volksgezondheid Welzijn en Sport, 2000. 947 For a good introduction to this approach see: Mahoney & Rueschemeyer, 2003.

227 patterns can be identified with regard to health care subfield specific policy. In that case, it might be desirable to redefine the level of case selection and look, for example, at individual policy initiatives or policy programmes. Within case and cross case examination could be conducted and the questions posed might follow the simple analytical framework of the policy cycle.948 This type of analysis is likely to be strengthened if theoretical insights from policy studies are being drawn upon. I consider the combination of policy theories with history to be promising, but certainly not free of barriers. Several questions can be raised. For example, are the differences in ontological and epistemological backgrounds between the fields too profound to allow for certain combinations of history and these theories? What are the consequences of most policy theories only covering part of the historical evidence, because of the multi-causal explanations found in historical scholarship? And finally, how do we deal with the tensions between the uniqueness of the historical accounts and the desire that might exist to arrive at research outcomes that can be generalised? However, the fact that I suggest that historians may benefit from borrowing concepts and theories from policy studies for description and analysis, implies that I do not see prohibitive objections to exploring such an approach.949 Moreover, these interactions might enrich the field of policy studies as well.

948 Examples of potentially relevant questions are: When do governments make subfield specific policies? What are the characteristics of health care subfield specific policies that get (successfully) implemented? And how congruent are the subfield specific policies with health care policy in general? 949 For authors defending a similar position, see for example: Burke, 2005; Critchlow, 1988, p.27; Haas, 2012, pp.72-73; Jonker, 2001; Nathaus, 2012, p.205; Pedersen, 2002, pp.50-51; Sewell, 2005; Stakenas & Soifer, 1991, p.57; Wolffram, 2003, pp.169-170; Wolffram, 2005; Zelizer, 2004; Zelizer, 2005a.

228

Archives

The National Archives (Kew)

TNA: FD 7/1496. TNA: MH 55/33. TNA: MH 55/43. TNA: MH 55/44. TNA: MH 55/47. TNA: MH 55/48. TNA: MH 55/580. TNA: MH 71/98. TNA: MH 156/466. TNA: MH 156/467. TNA: MH 160/1400. TNA: MH 160/1401. TNA: MH 160/1402. TNA: MH 160/1403. TNA: MH 160/1404. TNA: MH 160/1405. TNA: MH 160/1406. TNA: MH 160/1407. TNA: MH 160/1408.

Parliamentary Archives (London)

Parliamentary Archives, HC/CP/11357.

Nationaal Archief (The Hague)

Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 16. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 17. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 18. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 19. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 1262. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 1263.

229

Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 1803. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 1804. Nationaal Archief, Den Haag, Gezondheidsraad, 1957-1990, nummer toegang 2.15.36, inventarisnummer 1805.

Nationaal Archief, Den Haag, Ministerie van Welzijn, Volksgezondheid en Cultuur en haar taakvoorgangers, Directoraat-generaal Volksgezondheid, nummer toegang 2.15.65, inventarisnummer 1378. Nationaal Archief, Den Haag, Ministerie van Welzijn, Volksgezondheid en Cultuur en haar taakvoorgangers, Directoraat-generaal Volksgezondheid, nummer toegang 2.15.65, inventarisnummer 1379. Nationaal Archief, Den Haag, Ministerie van Welzijn, Volksgezondheid en Cultuur en haar taakvoorgangers, Directoraat-generaal Volksgezondheid, nummer toegang 2.15.65, inventarisnummer 1383.

230

Parliamentary Documents

House of Commons

HC Deb, 22 April 1971, vol 815. HC Deb, 26 April 1971, vol 816. HC Deb, 25 May 1971, vol 818. HC Deb, 22 October 1971, vol 823. HC Deb, 09 November 1971, vol 825. HC Deb, 22 November 1971, vol 826. HC Deb, 17 December 1971, vol 828. HC Deb, 12 December 1972, vol 848. HC Deb, 02 March 1978, vol 945. HC Deb, 08 March 1978, vol 945. HC Deb, 03 August 1978, vol 955. HC Deb, 08 May 1985, vol 78. HC Deb, 10 December 1985, vol 88. HC Deb, 25 July 1986, vol 102. HC Deb, 19 February 1987, vol 110. HC Deb, 10 March 1987, vol 112. HC Deb, 13 March 1987, vol 112. HC Deb, 07 April 1987, vol 114. HC Deb, 08 December 1987, vol 124. HC Deb, 10 May 1988, vol 133. HC Deb, 14 June 1988, vol 135. HC Deb, 23 June 1988, vol 135. HC Deb, 28 June 1988, vol 136. HC Deb, 01 November 1988, vol 139. HC Deb, 26 January 1989, vol 145. HC Deb, 20 February 1989, vol 147. HC Deb, 21 March 1989, vol 149. HC Deb, 25 July 1989, vol 157. HC Deb, 09 November 1989, vol 159. HC Deb, 06 December 1989, vol 163. HC Deb, 12 December 1989, vol 163. HC Deb, 15 December 1989, vol 163. HC Deb, 21 December 1989, vol 164. HC Deb, 16 January 1990, vol 165. HC Deb, 23 January 1990, vol 165. HC Deb, 08 February 1990, vol 166. HC Deb, 20 February 1990, vol 167. HC Deb, 20 March 1990, vol 169. HC Deb, 15 October 1990, vol 177. HC Deb, 09 November 1990, vol 180. HC Deb, 05 February 1991, vol 185. HC Deb, 18 November 1991, vol 199. HC Deb, 25 November 1991, vol 199. HC Deb, 21 January 1992, vol 202. HC Deb, 02 April 1992, vol 222.

231

HC Deb, 23 November 1992, vol 214. HC Deb, 26 January 1993, vol 217. HC Deb, 01 February 1993, vol 218. HC Deb, 04 February 1993, vol 218. HC Deb, 09 December 1993, vol 234. HC Deb, 10 May 1995, vol 259. HC Deb, 31 October 1995, vol 265. HC Deb, 06 November 1995, vol 265. HC Deb, 30 January 1996, vol 270. HC Deb, 26 June 1996, vol 280. HC Deb, 02 June 1998, vol 313. HC Deb, 19 October 1999, vol 336. HC Deb, 02 December 1999, vol 340. HC Deb, 15 December 2005, vol 440. HC Deb, 20 January 2006, vol 441. HC Deb, 14 July 2006, vol 448. HC Deb, 06 September 2011, vol 532.

House of Lords

HL Deb, 13 December 1961, vol 236. HL Deb, 25 March 1969, vol 300. HL Deb, 27 April 1983, vol 441. HL Deb, 09 February 1987, vol 484. HL Deb, 01 April 1987, vol 486. HL Deb, 15 June 1988, vol 498. HL Deb, 07 November 1988, vol 501. HL Deb, 26 October 1989, vol 511. HL Deb, 31 October 1989, vol 512. HL Deb, 13 July 1990, vol 521. HL Deb, 31 October 1990, vol 522. HL Deb, 15 November 1990, vol 523. HL Deb, 06 May 1998, vol 589.

Tweede Kamer

Kamerstukken II 1975/76, 13463, nr.6. Kamerstukken II 1980/81, 15426, nr.24. Kamerstukken II 1981/82, 17393, nr.2. Kamerstukken II 1983/84, 15426, nr.35. Kamerstukken II 1984/85, 18331, nr.6. Kamerstukken II 1984/85, 18331, nr.7. Kamerstukken II 1985/86, 15426, nr.38. Kamerstukken II 1986/87, 19434, nr.7. Kamerstukken II 1987/88, 20383, nr.5. Kamerstukken II 1987/88, 20383, nr.6. Kamerstukken II 1988/89, 20383, nr.9.

232

Kamerstukken II 1988/89, 20383, nr.10. Kamerstukken II 1989/90, 21300 XVI, nr.31. Kamerstukken II 1989/90, 21455, nr.4. Kamerstukken II 1989/90, 21545, nr.2. Kamerstukken II 1990/91, 21545, nr.9. Kamerstukken II 1990/91, 21800 XVI, nr.14. Kamerstukken II 1990/91, 21800 XVI, nr.28. Kamerstukken II 1990/91, 21800 XVI, nr.37. Kamerstukken II 1990/91, 21814, nr.2. Kamerstukken II 1990/91, 22025, nr.1. Kamerstukken II 1991/92, 20383, nr.14. Kamerstukken II 1991/92, 20383, nr.15. Kamerstukken II 1991/92, 20383, nr.16. Kamerstukken II 1991/92, 22300 XVI, nr.6. Kamerstukken II 1991/92, 22300 XVI, nr.44. Kamerstukken II 1991/92, 22311, nr.2. Kamerstukken II 1992/93, 22800 XVI, nr.80. Kamerstukken II 1993/94, 23407, nr.2. Kamerstukken II 1994/95, 23900 XVI, nr.34. Kamerstukken II 1994/95, 23900 XVI, nr.45. Kamerstukken II 1994/95, 23904, nr.2. Kamerstukken II 1995/96, 24400 XVI, nr.82. Kamerstukken II 1995/96, 24400 XVI, nr.101. Kamerstukken II 1996/97, 23877, nr.13. Kamerstukken II 1998/99, 26200 XVI, nr.64. Kamerstukken II 1998/99, 26200 XVI, nr.83. Kamerstukken II 1999/00, 26691, nr.5. Kamerstukken II 2000/01, 27400 XVI, nr.22. Kamerstukken II 2001/02, 28000 XVI, nr.97. Kamerstukken II 2001/02, 28000 XVI, nr.109. Kamerstukken II 2001/02, 28000 XVI, nr.115. Kamerstukken II 2002/03, 28600 XVI, nr.19. Kamerstukken II 2003/04, 29509, nr.3. Kamerstukken II 2004/05, 29509, nr.4. Kamerstukken II 2005/06, 29509, nr.9. Kamerstukken II 2005/06, 29509, nr.15. Kamerstukken II 2006/07, 29509, nr.16. Kamerstukken II 2006/07, 29509, nr.17. Kamerstukken II 2007/08, 29509, nr.19. Kamerstukken II 2007/08, 29509, nr.20. Kamerstukken II 2009/10, 29509, nr.27. Kamerstukken II 2009/10, 29509, nr.28. Kamerstukken II 2009/10, 29509, nr.29. Kamerstukken II 2010/11, 29509, nr.34. Kamerstukken II 2010/11, 29509, nr.44. Kamerstukken II 2013/14, 29509, nr.46. Kamerstukken II 2014/15, 29509, nr.48. Kamerstukken II 2014/15, 29509, nr.50. Kamerstukken II 2015/16, 29509, nr.53. Kamerstukken II 2016/17, 29509, nr.64.

233

Handelingen II 1976/77, 46. Handelingen II 1976/77, 47. Handelingen II 1978/79, 17. Handelingen II 1979/80, 17. Handelingen II 1984/85, 27. Handelingen II 1987/88, 21. Handelingen II 1989/90, 14. Handelingen II 1989/90, 15. Handelingen II 1989/90, 33. Handelingen II 1989/90, 35. Handelingen II 1990/91, 31. Handelingen II 1990/91, 33. Handelingen II 1991/92, 69. Handelingen II 1992/93, 44. Handelingen II 1994/95, 18. Handelingen II 1994/95, 32. Handelingen II 1994/95, 33. Handelingen II 1995/96, 36. Handelingen II 1995/96, 72. Handelingen II 1995/96, 88. Handelingen II 1996/97, 26. Handelingen II 1997/98, 22. Handelingen II 1997/98, 62. Handelingen II 2007/08, 101.

Handelingen Bijzondere Commissie voor de Nota Bejaardenbeleid 1975 (13463) 1975/76, 1. Handelingen UCV 1981/82, 29. Handelingen UCV 1982/83, 20. Handelingen UCV 1983/84, 77. Handelingen UCV 1986/87, 8. Handelingen UCV 1989/90, 11. Handelingen UCV 1990/91, 48.

Aanhangsel Handelingen II 1983/84, nr.993. Aanhangsel Handelingen II 1995/96, nr.781. Aanhangsel Handelingen II 1999/00, nr.1398. Aanhangsel Handelingen II 2015/16, nr.3230.

Eerste Kamer

Kamerstukken I 1975/76, 13600 XVII, nr.57a. Kamerstukken I 1992/93, 22572, nr.275.

Handelingen I 1976/77, 17.

234

Websites

Belastingdienst: Hoeveel moet u betalen? http://www.belastingdienst.nl/wps/wcm/connect/bldcontentnl/belastingdienst/prive/we rk_en_inkomen/sociale_verzekeringen/premies_volks_en_werknemersverzekeringen/v olksverzekeringen/hoeveel_moet_u_betalen Accessed 21 November 2016

Centraal Bureau voor de Statistiek: Sterfte aan aids al jaren stabiel https://www.cbs.nl/nl-nl/nieuws/2011/48/sterfte-aan-aids-al-jaren-stabiel Accessed 13 November 2016

Demeter: Academisch Hospice Demeter https://hospicedemeter.nl Accessed 3 November 2016 eHospice: A new model of care: The UK’s first cottage hospice? http://www.ehospice.com/uk/ArticleView/tabid/10697/ArticleId/17743/language/en- GB/Default.aspx Accessed 4 December 2016

Historici.nl: Geschiedenis & Actualiteit https://www.historici.nl/geschiedenis-en-actualiteit Accessed 30 January 2016

History & Policy: Homepage http://www.historyandpolicy.org Accessed 16 April 2010

Hospice in the Weald: Cottage Hospices http://www.hospiceintheweald.org.uk/patient-family-and-carer-information/our- services/cottage-hospices1. Accessed 4 December 2016

Hospice in the Weald: Cottage Hospice gets go ahead http://www.hospiceintheweald.org.uk/news/article/cottage-hospice-gets-go-ahead Accessed 4 December 2016

Hospice in the Weald: The launch of Cottage Hospices http://www.hospiceintheweald.org.uk/news/article/the-launch-of-cottage-hospices- rob-woolley-ceo Accessed 4 December 2016

KentLive: East Sussex church is chosen for cottage hospice site by Hospice in the Weald. http://www.kentlive.news/site-selected-pioneering-cottage-hospice-care/story- 28807298-detail/story.html. Accessed 4 December 2016

235

Kuria: Kuria in beeld http://www.kuria.nl/hospice/kuria-in-beeld-fotos Accessed 1 November 2016

Levenseindekliniek: Homepage http://www.levenseindekliniek.nl Accessed 12 March 2016

Medisch Contact: Te weinig consultatie bij palliatieve zorg https://www.medischcontact.nl/nieuws/laatste-nieuws/artikel/te-weinig-consultatie- bij-palliatieve-zorg.htm Accessed 14 August 2016

Medisch Contact: Verzacht het lijden tijdig https://www.medischcontact.nl/nieuws/laatste-nieuws/artikel/verzacht-het-lijden- tijdig.htm Accessed 30 August 2016

National Casemix Office: Home http://content.digital.nhs.uk/casemix Accessed 7 December 2016

NHS Choices: What is NHS continuing healthcare? http://www.nhs.uk/chq/Pages/2392.aspx?CategoryID=68 Accessed 4 December 2016

Office of National Statistics: Population Estimates for UK, England and Wales, Scotland and Northern Ireland, Population Estimates Timeseries 1971 to Current Year http://www.ons.gov.uk/ons/rel/pop-estimate/population-estimates-for-uk--england- and-wales--scotland-and-northern-ireland/population-estimates-timeseries-1971-to- current-year/index.html Accessed 12 February 2014

Parlement & Politiek: Dr. E. (Els) Borst-Eilers http://www.parlement.com/id/vg09lldosxzi/e_els_borst_eilers Accessed 15 December 2016

Parlement & Politiek: Drs. M.L.L.E. (Marlies) Veldhuijzen van Zanten-Hyllner http://www.parlement.com/id/vijdmkvn4uz/m_l_l_e_marlies_veldhuijzen_van_zanten Accessed 18 December 2016

Rijksoverheid: Tijdlijn Kabinet-Rutte-Asscher https://www.rijksoverheid.nl/regering/inhoud/wat-heeft-het-kabinet-bereikt/tijdlijn. Accessed 5 December 2016

SONCOS: Stichting Oncologische Samenwerking https://www.soncos.org/Home.html Accessed 1 December 2016

Stichting Promise: Christelijke Hospice https://stichting-promise.nl/pastorale-onderwerpen/christelijke-hospice.htm Accessed 4 September 2013

236

St. Barnabas House http://www.stbarnabas-hospice.org.uk Accessed: 2 March 2016

St. Luke’s Hospice https://www.stlukeshospice.org.uk Accessed: 2 March 2016

The Gold Standards Framework: Home http://www.goldstandardsframework.org.uk/home Accessed 9 August 2016

The Hospice History Project: Biography of Gillian Ford http://www.hospice-history.org.uk/byoralsurname?id=0040&search=f&page=0 Accessed 19 December 2013

The National Archives: National service frameworks and strategies http://webarchive.nationalarchives.gov.uk/20130718121128/http://endoflifecare.nhs. uk Accessed 7 December 2016 (captured 18 July 2013)

The National Archives: The National End of Life Care Programme http://webarchive.nationalarchives.gov.uk/+/www.nhs.uk/nhsengland/NSF/pages/Nati onalserviceframeworks.aspx Accessed 12 December 2016 (captured 14 July 2014)

VPRO Radio Archief: De levenseindekliniek http://weblogs.vpro.nl/radioarchief/2011/01/27/de-levenseindekliniek Accessed 3 March 2011

VPRO Radioarchief: Wie wat bewaart… vervolg… (2) http://weblogs.vpro.nl/radioarchief/2008/09/26/wie-wat-bewaart%e2%80%a6- vervolg-%e2%80%a6-2/#more-1376 Accessed 12 August 2013

World Health Organization: WHO definition of palliative care http://www.who.int/cancer/palliative/definition/en Accessed 17 October 2016

Zorgkaart Nederland: 171 particuliere woonzorgcentra in Nederland https://www.zorgkaartnederland.nl/particulier-woonzorgcentrum Accessed 20 November 2016

237

Literature

Aarnoudse, J. (1999). Tijd als geschenk. Bunnik: VTZ Nederland. Aarnoudse, J. (2014). Dood van jonge Twentenaar was begin van Vrijwillige Terminale Zorg in Nederland: Pionier Els Koldewijn. Antenne: Vrijwilligers Palliatieve Terminale Zorg, 123(1), 4-6. Abel, E.K. (1986). The hospice movement: Institutionalizing innovation. lnternational Journal of Health Services, 16(1), 71-85. Abel, E.K. (2013). The inevitable hour: A history of caring for dying patients in America. Baltimore: The Johns Hopkins University Press. Achenbaum, W.A. (1985). Editor's foreword: American medical history, social history and medical policy. Journal of Social History, 18(3), 343-347. Achterhuis, H. (1979). De markt van welzijn en geluk: Een kritiek van de andragogie. Baarn: Uitgeverij Ambo. Addicott, R. & Ross, S. (2010). Implementing the End of Life Care Strategy: Lessons for good practice. London: The King's Fund. Addington-Hall, J. (1998). Reaching out: Specialist palliative care for adults with non- malignant diseases. London: National Council for Hospice and Specialist Palliative Care Services & Scottish Partnership Agency for Palliative and Cancer Care. Admiraal, P.V. (1998). Euthanasie en de eed van Hippocrates: Herinneringen van een anesthesioloog. Amsterdam: Van Gennep. Algra, W. (2001, December 19). Pijnloos hoeft de dood niet te zijn. Trouw, p.13. Als je dood gaat word je op de badkamer gezet. (1980, November 22). Het Vrije Volk, p.23. Anderson, F. (1975). The elderly at the end of life. In Lack, S. & Lamerton, R. (Eds.). The hour of our death: A record of the Conference on the care of the dying held in London, 1973 (pp.8-17). London: Geoffrey Chapman. Anderson, W. (2014). Making global health history: Postcolonial worldliness of biomedicine. Social History of Medicine, 27(2), 372-384. Andeweg, R.B. & Irwin, G.A. (2009). Governance and politics of the Netherlands (3 ed.). Basingstoke: Palgrave Macmillan. André de la Porte, E. (1989). Terminale thuiszorg: Terminale thuiszorg uit vrijwilligersperspectief. Medisch Contact, 44(6), 186-188. Andresen, A. & Grønlie, T. (2007a). Transferring public health, medical knowledge and science in the 19th and 20th century. In Andresen, A. & Grønlie, T. (Eds.). Transferring public health, medical knowledge and science in the 19th and 20th century: Conference proceedings (pp.7-12). Bergen: Rokkansenteret. Andresen, A. & Grønlie, T. (2007b). Travellers and travels of health: From inspiration to adaptation. In Andresen, A. & Grønlie, T. (Eds.). Transferring public health, medical knowledge and science in the 19th and 20th century: Conference proceedings (pp.15-31). Bergen: Rokkansenteret. Anning, P. (1998). Have hospices lost their way? Nursing Management, 5(5), 6-7. Ariès, P. (1974). Western attitudes toward death: From the middle ages to the present. Baltimore: Johns Hopkins University Press. Ariès, P. (1981). The hour of our death. New York: Vintage Books. Arkemheen in Nijkerk krijgt hospice-afdeling. (1993, June 15). Nederlands Dagblad, p.3. Arndt, A., Häberlen, J.C. & Reinecke, C. (Eds.). (2011). Vergleichen, Verflechten, Verwirren? Europäische Geschichtsschreibung zwischen Theorie und Praxis.

238

Göttingen: Vandenhoek & Ruprecht. Arnoldussen, P. (2000, July 18). De Pijp zal even moeten wennen aan het hospice. Het Parool, p.5. Ashby, M. (2009). The dying human: A perspective from palliative medicine. In Kellehear, A. (Ed.). The study of dying: From autonomy to transformation (pp.76-98). Cambridge: Cambridge University Press. Associatie van High Care Hospices, NPV & VPTZ (2009). Rapport gezamenlijke registratie vrijwilligersinzet palliatieve zorg. Baar, F. (1998a). Palliatieve en terminale zorg in een verpleeghuis: Een plaatsbepaling na twintig jaar projectervaring. In Spijker, T. & Laarman, M. (Eds.). They just fade away: Symposiumverslag palliatieve zorg (pp.67-78). Utrecht: Lemma. Baar, F. (1998b). Lessen van levenden: 20 jaar palliatieve en terminale zorg in Antonius IJsselmonde. Rotterdam: Antonius IJsselmonde. Baar, F. (1999). Palliative care for the terminally ill in the Netherlands: The unique role of nursing homes. European Journal of Palliative Care, 6(5), 169-172. Baar, F. & Van der Kloot Meijburg, H. (2002). The role of the physician in nursing home care in the Netherlands. In Hockley, J. & Clark, D. (Eds.). Palliative care for older people in care homes (pp.104-119). Buckingham: Open University Press. Baggott, R. (2004). Health and health care in Britain. Basingstoke: Palgrave Macmillan. Baines, M. (2011). From pioneer days to implementation: Lessons to be learnt. European Journal of Palliative Care, 18(5), 223-227. Baines, M. (2012). Bringing hospice home: The real story of palliative care. Progress in Palliative Care, 20(3), 154-157. Bakker, C.T. & Van der Velden, H. (2005). Genezen van de financiële zorgen. In Kluveld, A., Van Baal, A.H., Bakker, C.T. & Blok, G. (Eds.). Genezen: Opstellen bij het afscheid van Marijke Gijswijt-Hofstra (pp.68-79). Amsterdam: Pallas Publications. Bakker, C.T. & Van Overbeeke, G. (2014). Zusters in de zorg: Een geschiedenis van Franciscanessen van Charitas. Zutphen: Walburg Pers. Bal, R., Bijker, W.E. & Hendriks, R. (2002). Paradox van wetenschappelijk gezag: Over de maatschappelijke invloed van adviezen van de Gezondheidsraad. Den Haag: Gezondheidsraad. Baldwin, P. (2004). Comparing and generalizing: Why all history is comparative, yet no history is sociology. In Cohen, D. & O'Connor, M. (Eds.). Comparison and history: Europe in cross-national perspective (pp.1-22). New York: Routledge. Baldwin, P. (2005a). Beyond weak and strong: Rethinking the state in comparative policy history. Journal of Policy History, 17(1), 12-33. Baldwin, P. (2005b). Disease and democracy: The industrialized world faces AIDS. Berkeley: University of California Press. Bardach, E. (2006). Policy dynamics. In Moran, M., Rein, M. & Goodin, R.E. (Eds.). The Oxford handbook of public policy (pp.336-366). Oxford: Oxford University Press. Barnes, J. (1988). Books and journals. In Seldon, A. (Ed.). Contemporary history: Practice and method (pp.30-54). Oxford: Basil Blackwell. Barraclough, G. (1966). An introduction to contemporary history. Harmondsworth: Penguin Books. Barritt, P.W. (1984). Care of the dying in one practice. Journal of the Royal College of General Practitioners, 34(265), 446-448. Bart, H. (2004). Palliatieve zorg blijvend in ontwikkeling: Gaat het de goede kant op? Pallium: Tijdschrift over Palliatieve Zorg, 6(1), 21-25. Baszanger, I. (1998). Inventing pain medicine. From the laboratory to the clinic. New Brunswick: Rutgers University Press.

239

Bates, T., Clarke, D.G., Hoy, A.M. & Laird, P.P. (1981). The St Thomas' Hospital Terminal Care Support Team: A new concept of hospice care. Lancet, 317(8231), 1201-1203. Bates, T.D. (1982). At home and in the ward: The establishment of a support team in an acute general hospital. In Wilkes, E. (Ed.). The dying patient: The medical management of incurable and terminal illness (pp.263-288). Lancaster: M.T.P. Press. Bauerkämper, A. (2009). Europe as social practice: Towards an interactive approach to modern European history. East Central Europe, 36(1), 20-36. Baumgartner, F.R. & Jones, B.D. (Eds.). (2002). Policy dynamics. Chicago: The University of Chicago Press. Baumgartner, F.R., Green-Pedersen, C. & Jones, B.D. (2006). Comparative studies of policy agendas. Journal of European Public Policy, 13(7), 959-974. Baumgartner, F.R. & Jones, B.D. (2009). Agendas and instability in American politics. Chicago: The University of Chicago Press. Bayly, C.A., Rao, V., Szreter, S. & Woolcock, M. (Eds.). (2011). History, historians and development policy: A necessary dialogue. Manchester: Manchester University Press. Beckfield, J., Olafsdottir, S. & Sosnaud, B. (2013). Healthcare systems in comparative perspective: Classification, convergence, institutions, inequalities, and five missed turns. Annual Review of Sociology, 39(1), 127-146. Beekmans, K. (1989, April 23). Hospice-bewegingen voorzien in 'huislijke omgeving'. NRC Handelsblad, p.2. Benzenhöfer, U. (2009). Der gute Tod? Geschichte der Euthanasie und Sterbehilfe. Göttingen: Vandenhoeck & Ruprecht. Berenschot & JoiningMinds (2006). Onderzoek naar financiële knelpunten bij voorzieningen voor palliatieve terminale zorg: Eindrapportage. Utrecht: Berenschot. Beresford, L. & Connor, S.R. (1999). National Hospice Organization. Hospice Journal, 14(3-4), 15-31. Berger, S. (2010). Comparative history. In Berger, S., Feldner, H. & Passmore, K. (Eds.). Writing history: Theory and practice (pp.187-205). London: Bloomsbury Academic. Berridge, V. & Strong, P. (1991). AIDS and the relevance of history. Journal for the Social History of Medicine, 4(1), 129-138. Berridge, V. (1993). Introduction: AIDS and contemporary history. In Berridge, V. & Strong, P. (Eds.). AIDS and contemporary history (pp.1-14). Cambridge: Cambridge University Press. Berridge, V. & Strong, P. (1993). AIDS and contemporary history. Cambridge: Cambridge University Press. Berridge, V. (1994). Researching contemporary history: AIDS. History Workshop Journal, 38(1), 228-234. Berridge, V. (1996). AIDS in the UK: The making of policy, 1981-1994. New York: Oxford University Press. Berridge, V. (1999). Health and society in Britain since 1939. Cambridge: Cambridge University Press. Berridge, V. (2000a). History in public health: A new development for history? Hygiea Internationalis, 1(1), 23-36. Berridge, V. (2000b). History in public health: Who needs it? Lancet, 356 (9245), 1923-1925. Berridge, V. (2008). History matters? History's role in health policy making. Medical History, 52(3), 311-326. Berridge, V. (2010). Thinking in time: Does health policy need history as evidence?

240

Lancet, 375 (9717), 798-799. Berridge, V. (2011). Contemporary history of medicine and health. In Jackson, M. (Ed.). The Oxford handbook of the history of medicine (pp.117-132). Oxford: Oxford University Press. Besteman, A., Meeuwenoord, G., Leusink, M. & Brueren, M. (1989). Afgewogen inzet: Terminale thuiszorg door vrijwilligers. Nijmegen: Bureau Agogische Producties. Bevan, G., Karanikolos, M., Exley, J., Nolte, E., Connolly, S. & Mays, N. (2014). The four health systems of the United Kingdom: How do they compare? London: The Health Foundation & Nuffield Trust. Beverdam, G. (2014, March 1). Toen en nu: De politieke erfenis van Els Borst. Nederlands Dagblad. Bibby, A. (1999). Hospice without walls: The story of West Cumbria's remarkable Hospice at Home Service. London: Calouste Gulbenkian Foundation. Biesenbeek, F.J. (1985). Overheidsbeleid en terminale zorg. In Bruning, H. & Klein Hesselink, J. (Eds.). Omgaan met sterven: Symposium verslagen 14 juni en 27 september 1985 (pp.5-12). Leiden: Uitgeverij Zorn. Biesenbeek, F.J. (1986). Overheid en terminale zorg. Medisch Contact, 41(11), 327- 328. Bijker, W.E., Bal, R. & Hendriks, R. (2009). The paradox of scientific authority: The role of scientific advice in democracies. Cambridge: The MIT Press. Bijsterveld, K. (1996). Geen kwestie van leeftijd: Verzorgingsstaat, wetenschap en discussies rond ouderen in Nederland, 1945-1982. Amsterdam: Van Gennep. Birmingham CrossCity CCG & Birmingham South Central CCG (2014). Integrated palliative and end of life care commissioning strategy for Birmingham 2014/2015-2017/2018. Biswas, B. & Ahmedzai, S. (1993). The medicalization of dying. In Clark, C. (Ed.). The future for palliative care: Issues of policy and practice (pp.132-147). Buckingham: Open University Press. Blaas, P. (2001). Vorm geven aan de tijd: Over periodiseren. In Grever, M. & Jansen, H. (Eds.). De ongrijpbare tijd: Temporaliteit en de constructie van het verleden (pp.35-47). Hilversum: Verloren. Blaauwbroek, H. (1997a). Inleiding. In Blaauwbroek, H., Van der Hoeven, E. & Visser, E. (Eds.). In het belang van de verzekerde: Geschiedenis van de Ziekenfondsraad (pp.11-23). Zeist: Stichting Historie Ziekenfondswezen. Blaauwbroek, H. (1997b). Verstrekkingen. In Blaauwbroek, H., Van der Hoeven, E. & Visser, E. (Eds.). In het belang van de verzekerde: Geschiedenis van de Ziekenfondsraad (pp.121-145). Zeist: Stichting Historie Ziekenfondswezen. Blijham, G.H. & Vissers, K. (2010). Concept contourenplan palliatieve zorg 2010-2020: Platform Palliatieve Zorg. Blom, J.C.H. (2000). Pillarisation in perspective. West European Politics, 23(3), 153- 164. Boddaert, M., Douma, J., Van Aalst, B., Bijkerk, M., Brinkman, A., Brom, L. & Degenaar, A. (2015). Palliatieve zorg in Nederlandse ziekenhuizen: Resultaten 2015. Utrecht: Palliactief & IKNL. Boele, A., Van Dixhoorn, A. & Van Houwelingen, P. (2015). Vroeger voor vandaag: Heden-verledenvergelijkingen voor praktisch gebruik. Beleid en Maatschappij, 42(3), 224-243. Boer, E.J. (1976, March 29). Steun bij overlijden bron van misverstand. NRC Handelsblad, p.3. Boer, E.J. (1977, September 10). Verpleeghuis Antonius in Rotterdam begint project stervensbegeleiding. NRC Handelsblad, p.2. Boersma, Y. (2012, November 12). Terminaal zieke is hier geen patiënt. Het Parool, p.15.

241

Bol, S. & Meijer, H. (2014, April 5). Blogs & bladen. Nederlands Dagblad. Bonjer, J. (1987, October 3). Steeds fellere concurrentiestrijd in thuisverpleging. NRC Handelsblad, p.7. Boot, J.M. & Knapen, M.H.J.M. (1983). De Nederlandse gezondheidszorg: Gebruikers, voorzieningen en het overheidsbeleid in de Nederlandse gezondheidszorg. Utrecht: Het Spectrum. Boot, J.M. (2013). De Nederlandse gezondheidszorg. Houten: Bohn Stafleu van Loghum. Borst-Eilers, E. (2003, August 3). Brieven: Nederland goed op weg met palliatieve zorg. NRC Handelsblad. Borst-Eilers, E. (2009, December 1). Ik ben níét van mening dat de Euthanasiewet te snel is ingevoerd. NRC Handelsblad, p.7. Borst wil langdurige stervensbegeleiding mogelijk maken. (2000, November 2). Algemeen Dagblad, p.25. Borst: Palliatie geen alternatief voor euthanasie. (2001, November 19). NRC Handelsblad, p.3. Bösch, F. & Danyel, J. (Eds.). (2012a). Zeitgeschichte: Konzepte und Methoden. Göttingen: Vandenhoeck & Ruprecht. Bösch, F. & Danyel, J. (2012b). Die Zeitgeschichtsforschung und ihre Methoden. In Bösch, F. & Danyel, J. (Eds.). Zeitgeschichte: Konzepte und Methoden (pp.9- 21). Göttingen: Vandenhoeck & Ruprecht. Bostock, Y. (1991). Letting go and living: The story of St Columba's Hospice. Edinburgh: St Columba's Hospice. Bouwens, A.M.C.M. (1995). In goede handen: Tussen gasthuis en zorgcentrum. Raamsdonkveer: Vèrse Hoeven Uitgeverij. Boyle, S. (2011). United Kingdom (England): Health system review. London: European Observatory on Health Systems and Policies. Brandt, H.E., Deliens, L., Ooms, M.E., Van der Steen, J.T., Van der Wal, G. & Ribbe, M.W. (2005). Symptoms, signs, problems, and diseases of terminally ill nursing home patients: A nationwide observational study in the Netherlands. Archives of Internal Medicine, 165(3), 314-320. Brandt, H.E. (2006). Palliative care in Dutch nursing homes. Amsterdam: Vrije Universiteit. Breedveld, E. (2003). Thuiszorg in bedrijf: Herstructurering van de thuiszorgbranche tussen 1987 en 1997. Tilburg: Universiteit Tilburg. Breeman, G., Lowery, D., Poppelaars, C., Resodihardjo, S.L., Timmermans, A. & De Vries, J. (2009). Political attention in a coalition system: Analysing Queen's Speeches in the Netherlands 1945-2007. Acta Politica, 44(1), 1-27. Brinkman-Stoppelenburg, A., Boddaert, M., Douma, J. & Van der Heide, A. (2015). Steeds meer palliatieve zorg in het ziekenhuis. Medisch Contact, 70(42), 4-7. British Academy (2008). Punching our weight: The humanities and social sciences in public policy making. London: British Academy. Brivati, B., Buxton, J. & Seldon, A. (Eds.). (1996). The contemporary history handbook. Manchester: Manchester University Press. Broad, M.F. (1981). Final report to Winston Churchill Memorial Trust on hospice care of terminally ill patients in Britain. Hamilton. Bruinsma, J. (2011, September 13). Privéklinieken doen nu volledig mee. Volkskrant. Bruning, H. & Klein Hesselink, J. (1985a). Conclusies en suggesties van het projekt Antonius-IJsselmonde. In Bruning, H. & Klein Hesselink, J. (Eds.). Omgaan met sterven: Symposium verslagen 14 juni en 27 september 1985 (pp.102-141). Leiden: Uitgeverij Zorn. Bruning, H. & Klein Hesselink, J. (Eds.). (1985b). Omgaan met sterven: Symposium verslagen 14 juni en 27 september 1985. Leiden: Uitgeverij Zorn.

242

Bruning, H. (1989). Samenwerkingsverband Terminale Thuiszorg Rotterdam: Eerste interim-rapportage in het kader van de proeffase van het onderzoek 'Experimenten thuisverpleging'. Nijmegen: Instituut voor Toegepaste Sociale Wetenschappen. Bruning, H. (1990). Experimenten thuisverpleging: Thuis zorgen voor terminale patiënten. Nijmegen: Instituut voor Toegepaste Sociale wetenschappen. Bruning, H. (1992). De rol van vrijwilligers in de thuiszorg. In Kraaipoel, R.J. (Ed.). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad (pp.32-39). Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Bruntink, R. (2000). Projectgroep Integratie Hospicezorg stimuleert netwerkvorming: Tijd voor toetsing aangebroken. Pallium: Tijdschrift over Palliatieve Zorg, 2(2), 7-9. Bruntink, R. (2001a). Directeur wordt adviseur: Er is nogal wat neergezet. Pallium: Tijdschrift over Palliatieve Zorg, 3(6), 26-27. Bruntink, R. (2001b). Rondetafelgesprek over de toekomst: 'We moeten levend dood willen gaan'. Pallium: Tijdschrift over Palliatieve Zorg, 3(3), 16-19. Bruntink, R. (2003). Een goede plek om te sterven: Palliatieve zorg in Nederland (2 ed.). Zutphen: Plantaan. Bruntink, R. (2008). Els Borst-prijs. Pallium. Multidisciplinair Tijdschrift over Palliatieve Zorg, 10(1), 4. Buck, J. (2004). Home hospice versus home health: Cooperation, competition, and cooptation. Nursing History Review, 12(1), 25-46. Buck, J. (2007a). Reweaving a tapestry of care: Religion, nursing, and the meaning of hospice, 1945-1978. Nursing History Review, 15(1), 113-145. Buck, J. (2007b). Netting the hospice butterfly: Politics, policy, and translation of an ideal. Home Healthcare Nurse, 25(9), 566-571. Buck, J. (2009). 'I am willing to take the risk': Politics, policy and the translation of the hospice ideal. Journal of Clinical Nursing, 18(19), 2700-2709. Buck, J. (2014). Ideals, politics, and the evolution of the American hospice movement. In Jennings, B. & Kirk, T.W. (Eds.). Hospice Ethics (pp.13-34). Oxford: Oxford University Press. Budde, G., Conrad, S. & Janz, O. (Eds.). (2006). Transnationale Geschichte: Themen, Tendenzen und Theorien. Göttingen: Vandenhoeck & Ruprecht. Bulmer, M. (1982). The uses of social research: Social investigation in public policymaking. London: George Allen & Unwin. Bulmer, M. (Ed.). (1986). Social science and social policy. London: Allen & Unwin. Burau, V. & Blank, R.H. (2006). Comparing health policy: An assessment of typologies of health systems. Journal of Comparative Policy Analysis: Research and Practice, 8(1), 63-76. Burgemeesters openen hospice. (2013, April 5). De Telegraaf, p.11. Burke, P. (2005). History and social theory. Cambridge: Polity. Burne, S.R., Dominica, F. & Baum, J.D. (1984). Helen House - Hospice for children: Analysis of the first year. British Medical Journal, 289(6459), 1665-1668. Byock, I.R. (1998). Hospice and palliative care: A parting of the ways or a path to the future? Journal of Palliative Medicine, 1(2), 165-176. Cairney, P. (2012). Understanding public policy: Theories and issues. Basingstoke: Palgrave Macmillan. Calman, K. (1992). A strategy for palliative care. In Griffin, J. (Ed.). Palliative care for all: Directions for the decade. Papers from a conference held in London on 12 and 13 November 1992 (pp.47-48). London: Cancer Relief Macmillan Fund. Calman, K.C. (1984). Hospices. British Medical Journal, 288(6428), 1454. Campagne 'Thuishuis' Wijchen van start. (2012, November 2). De Gelderlander.

243

Campion, M. (1979). The making of a hospice. London: Congregation of the Sisters of Charity. Canadian Hospice Palliative Care Association (2013). An integrated palliative approach to care: Innovative models of integrated hospice palliative care. Cartwright, A., Hockey, L. & Anderson, J.L. (1973). Life before death. London: Routledge & Kegan Paul. CDA, PvdA & ChristenUnie (2007). Coalitieakkoord tussen de Tweede Kamerfracties van CDA, PvdA en ChristenUnie. Centeno, C., Clark, D., Lynch, T., Rocafort, J., Praill, D., liana de Lima, L., Greenwood, A., Flores, L.A., Brasch, S. & Giordano, A. (2007). Facts and indicators on palliative care development in 52 countries of the WHO European region: Results of an EAPC Task Force. Palliative Medicine, 21(6), 463-471. Centraal Bureau voor de Statistiek (2014). Gezondheid en zorg in cijfers 2014. Den Haag: Centraal Bureau voor de Statistiek. Central Health Services Council (1971). Report of the Central Health Services Council for the year ended 31st December, 1970: Preceded by a statement made by the Secretary of State for Social Services and the Secretary of State for Wales. London: Her Majesty's Stationery Office. Centrale Raad voor de Volksgezondheid (1982). Interim-advies inzake het functioneren van verpleeghuizen. Rijswijk: Centrale Raad voor de Volksgezondheid. Chambraere, K., Centeno, C., Hernández, E.A., Van Wesemael, Y., Guillén-Grima, F., Deliens, L. & Payne, S. (2011). Palliative care development in countries with a euthanasia law: European Association for Palliative Care. Clark, C. (2015). The Cottage Hospice: Making it real: Hospice in the Weald. Clark, D. (1991). Contradictions in the development of new hospices: A case study. Social Science & Medicine, 33(9), 995-1004. Clark, D. (1993a). Whither the hospices? In Clark, D. (Ed.). The future for palliative care: Issues of policy and practice (pp.167-177). Buckingham: Open University Press. Clark, D. (1993b). Partners in care? Hospices and Health Authorities. Aldershot: Avebury. Clark, D., Small, N. & Malson, H. (1995). Palliative care: Hospices to fortune. Health Service Journal, 105(5480), 30-31. Clark, D., Malson, H., Small, N., Mallett, K., Neale, B. & Heather, P. (1997). Half full or half empty? The impact of health reform on palliative care services in the UK. In Clark, D., Hockley, J. & Ahmedzai, S. (Eds.). New themes in palliative care (pp.60-74). Buckingham: Open University Press. Clark, D. (1998). Originating a movement: Cicely Saunders and the development of St Christopher's Hospice, 1957-1967. Mortality, 3(1), 43-63. Clark, D. (1999). Cradled to the grave? Terminal care in the United Kingdom, 1948- 1967. Mortality, 4(3), 225-247. Clark, D. & Seymour, J.E. (1999). Reflections on palliative care. Buckingham: Open University Press. Clark, D. (2000). Palliative care history: A ritual process. European Journal of Palliative Care, 7(2), 50-55. Clark, D., Ten Have, H. & Janssens, R. (2000). Common threads? Palliative care service developments in seven European countries. Palliative Medicine, 14(6), 479-490. Clark, D. (2001). Religion, medicine and community in the early origins of St. Christopher's Hospice. Journal of Palliative Medicine, 4(3), 353-360. Clark, D. (2002). Between hope and acceptance: The medicalisation of dying. British Medical Journal, 324(7342), 905-907. Clark, D., Small, N., Wright, M., Winslow, M. & Hughes, N. (2005). A bit of heaven for

244

the few? An oral history of the modern hospice movement in the United Kingdom. Lancaster: Observatory Publications. Clark, D. & Centeno, C. (2006). Palliative care in Europe: An emerging approach to comparative analysis. Clinical Medicine, 6(2), 197-201. Clark, D. (2013). Transforming the culture of dying: The work of the project on death in America. Oxford: Oxford University Press. Clark, D. (2016). To comfort always: A history of palliative medicine since the nineteenth century. Oxford: Oxford University Press. Clarke, J., Bainton, D., Lendvai, N. & Stubbs, P. (2015). Making policy move: Towards a politics of translation and assemblage. Bristol: Policy Press. Clavin, P. (2005). Defining transnationalism. Contemporary European History, 14(4), 421-439. Cleton, F.J. & Coebergh, J.W.W. (Eds.). (1988). Cancer in the Netherlands: Scenarios on cancer 1985 - 2000. Dordrecht: Kluwer Academic Publishers. Coene, R.D. (1991). 'Hospice'-zorg nader bekeken: Terminale zorg is geen categorale zorg. Medisch Contact, 46(39), 1156-1158. Collier, R.B. & Mazzuca, S. (2006). Does history repeat? In Goodin, R.E. & Tilly, C. (Eds.). The Oxford handbook of contextual political analysis (pp.473-489). Oxford: Oxford University Press. Companje, K.P. (2008a). Het Ziekenfondsenbesluit en de gevolgen voor de verzekering van zorg, 1940-1986. In Companje, K.P. (Ed.). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880-2006 (pp.476-536). Amsterdam: Aksant. Companje, K.P. (2008b). Verzekering van zorg 1943-2007: Gezondheidszorg of sociale zekerheid. In Companje, K.P. (Ed.). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880-2006 (pp.559-628). Amsterdam: Aksant. Companje, K.P. (Ed.). (2008c). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880- 2006. Amsterdam: Aksant. Companje, K.P. (2008d). Het Ziekenfondsenbesluit en de verstrekking van zorg. In Companje, K.P. (Ed.). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880-2006 (pp.629-708). Amsterdam: Aksant. Companje, K.P. & Rigter, D. (2008). 'Ontwerp der wet regelende de ziekenverzorging', of de spanning tussen overheidsfinanciën en volksgezondheid, 1918-1941. In Companje, K.P. (Ed.). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880-2006 (pp.399-476). Amsterdam: Aksant. Companje, K.P. (Ed.). (2014). Financing high medical risks: Discussions, developments, problems and solutions on the coverage of the risk of long-term care in Norway, Germany and the Netherlands since 1945 in European perspective. Amsterdam: Amsterdam University Press. Connolly, S., Bevan, G. & Mays, N. (2010). Funding and performance of healthcare systems in the four countries of the UK before and after devolution. London: Nuffield Trust. Conrad, C. (2011). Social policy history after the transnational turn. In Kettunen, P. & Petersen, K. (Eds.). Beyond welfare state models: Transnational historical perspectives on social policy (pp.218-240). Cheltenham: Edward Elgar. Conrad, S. (2013). Globalgeschichte: Eine Einführung. München: Verlag C.H. Beck. Cooter, R. (2003). The dead body. In Cooter, R. & Pickstone, J.V. (Eds.). Companion to medicine in the twentieth century (pp.469-485). London: Routledge. Corstens-Stieger, H.J.M. & Van Huut, M. (1998). Op zoek naar de relatie tussen

245

palliatieve zorg en architectuur: Een gesprek tussen Hetty Corstens en Max van Huut. Nijmegen: Integraal Kankercentrum Oost. Courtens, A.M. & Spreeuwenberg, C. (1999). Palliatieve zorg in de regio: Consultatief team biedt steun bij zorg voor terminale patiënten. Medisch Contact, 54(50), 1735-1737. Cox, N. (1988). Public records. In Seldon, A. (Ed.). Contemporary history: Practice and method (pp.70-88). Oxford: Basil Blackwell. Critchlow, D.T. (1988). Introduction. Social-policy history: Past and present. In Critchlow, D.T. & Hawley, E.W. (Eds.). Federal social policy: The historical dimension (pp.9-31). Pennsylvania: The Pennsylvania State University Press. Critchlow, D.T. (2005). Editor's preface. In Zelizer, J.E. (Ed.). New directions in policy history (pp.vii-ix). Pennsylvania: The Pennsylvania State University Press. Crowther, T. (1993). Euthanasia. In Clark, C. (Ed.). The future for palliative care: Issues of policy and practice (pp.111-131). Buckingham: Open University Press. Crul, B.J.P. & Van der Linden, A. (1983). Pijnbehandeling bij kanker. De rol van het Integraal Kankercentrum bij de behandelingsmogelijkheden van pijn bij kanker. Medisch Contact, 38(48), 1517-1518. Cundiff, D. (1992). Euthanasia is not the answer: A hospice physician's view. Totowa: Humana Press. Currie, E. (2002). Diaries 1987-1992. London: Time Warner Paperbacks. Curthoys, A. & Lake, M. (Eds.). (2005). Connected worlds: History in transnational perspective. Canberra: ANU E Press. Cusveller, B.S., Jochemsen, H. & De Heer, A. (1993). Kwaliteitstoetsing van terminale zorgverlening: Vanuit het perspectief van de Nederlandse Patiënten Vereniging. Veenendaal: Nederlandse Patiënten Vereniging. Davies, H.T.O., Nutley, S.M. & Smith, P.C. (Eds.). (2000). What works? Evidence- based policy and practice in public services. Bristol: The Policy Press. Davies, S. & Seymour, J. (2002). Historical and policy contexts. In Hockley, J. & Clark, D. (Eds.). Palliative care for older people in care homes (pp.4-33). Buckingham: Open University Press. De Bruijne, H. (2013, December 28). Troost in de laatste minuut: Verpleegkundige, pionier, oma. Nederlands Dagblad, p.92. De Bruin, A. & De Bruin, C. (2000). Zoekend naar zekerheid in het Groene Hart: Zorgverzekeraar Zorg en Zekerheid 1825-2000. Hilversum: Verloren. De Graeff, A., Witteveen, P.O., Van Boxtel, A.J.H., Tjia, P.F., Vrehen, H.M. & Blijham, G.H. (1997). Palliatieve zorg: Activiteiten in het Academisch Ziekenhuis Utrecht. Medisch Contact, 52(5), 151-153. De Haan, M. & Ribbe, M.W. (1993). Huisartsgeneeskunde en verpleeghuisgeneeskunde: Een vergelijking. Nederlands Tijdschrift voor Geneeskunde, 137(52), 2696. De Hart, J. (2014). Van vaste kaders naar verschuivende panelen: Religieuze ontwikkelingen in Nederland. In Van Dam, P., Kennedy, J. & Wielenga, F. (Eds.). Achter de zuilen: Op zoek naar religie in naoorlogs Nederland (pp.101- 134). Amsterdam: Amsterdam University Press. De Jong-Vekemans, M. (1981). Netherlands: Development of terminal care in the Netherlands. In Saunders, C., Summers, D.H. & Teller, N. (Eds.). Hospice: The living idea (pp.180-182). London: Edward Arnold. De Jong-Vekemans, M. (1985). Hulpverleners in het verpleeghuis. In Bruning, H. & Klein Hesselink, J. (Eds.). Omgaan met sterven: Symposium verslagen 14 juni en 27 september 1985 (pp.51-62). Leiden: Uitgeverij Zorn. De Korte-Verhoef, M.C. (2004). Eindrapport Toetsingscommissie COPZ: Vijf jaar Centra voor Ontwikkeling van Palliatieve Zorg. De Lange, S.A. (1970). 'Medische macht en ethiek': Een boekbespreking door Prof. Dr.

246

S.A. de Lange. Medisch Contact, 25(2), 35-36. De Leeuw, K. (1993, February 9). Beschutte plaats om te sterven. Algemeen Dagblad, p.16. De Minister van Volksgezondheid Welzijn en Sport. (1999, January 11). Instellingsbesluit Projectgroep Integratie Hospicezorg. Staatscourant, pp.7-8. De Pijper, N.F., Ribbe, M.W. & Stoop, J.A. (1993). Artikelenreeks over verpleeghuisgeneeskunde. Nederlands Tijdschrift voor Geneeskunde, 137(47), 2421-2424. De Rooy, P. (1997). Farewell to pillarization. The Netherlands Journal of Social Sciences, 25(1), 27-41. De stelling van Jet Bussemaker: Aan het recht op abortus en euthanasie wordt niet getornd. (2007, March 10). NRC Handelsblad, p.19. De Visser, E. (2002, April 18). Hard werken aan mooi sterfbed voor terminale patiënten. Volkskrant, p.6. De Vries, H. (2014, December 20). Bijna zoals thuis overlijden. Reformatorisch Dagblad, p.6. De Vries, H. (2015, January 24). Een leger van dementerenden. Reformatorisch Dagblad, p.6. De Vries, H. (2016a, May 7). Complexe puzzels in een verpleeghuis. Reformatorisch Dagblad, p.6. De Vries, H. (2016b, January 17). Hospicezorg aan huis. Reformatorisch Dagblad, p.6. De Wilde, D. (2014). Sonja Gribnau: 30 jaar vrijwilliger VPTZ Arnhem. Antenne: Vrijwilligers Palliatieve Terminale Zorg, 123(1), 10-11. De Wit, A. (2014, November 18). Eerste gast van het hospice bezorgt me nóg kippenvel. AD Haagsche Courant, p.2. De Wolff, L.J. (1984a). Vraaggesprekken: H.J. Wouters. In De Wolff, L.J. (Ed.). De prijs voor gezondheid: Het Centraal Orgaan Ziekenhuistarieven 1965 -1982 (pp.127-132). Baarn: Ambo. De Wolff, L.J. (1984b). Vraaggesprekken: G.M.J. Veldkamp. In De Wolff, L.J. (Ed.). De prijs voor gezondheid: Het Centraal Orgaan Ziekenhuistarieven 1965 -1982 (pp.133-150). Baarn: Ambo. De Wolff, L.J. (1984c). Vraaggesprekken: G.F. Disse. In De Wolff, L.J. (Ed.). De prijs voor gezondheid: Het Centraal Orgaan Ziekenhuistarieven 1965 -1982 (pp.151- 157). Baarn: Ambo. De Wolff, L.J. (1984d). Vraaggesprekken: J.P.M. Hendriks. In De Wolff, L.J. (Ed.). De prijs voor gezondheid: Het Centraal Orgaan Ziekenhuistarieven 1965 -1982 (pp.185-191). Baarn: Ambo. De Wolff, L.J. (1984e). Vraaggesprekken: E. Veder-Smit. In De Wolff, L.J. (Ed.). De prijs voor gezondheid: Het Centraal Orgaan Ziekenhuistarieven 1965 -1982 (pp.193-199). Baarn: Ambo. Den Exter, A., Hermans, H., Dosljak, M. & Busse, R. (2004). Health care systems in transition: Netherlands. London: The European Observatory on Health Care Systems. Department of Health (2000). The NHS cancer plan: A plan for investment, a plan for reform. London: Department of Health. Department of Health (2003). Building on the best: Choice, responsiveness and equity in the NHS. London: The Stationary Office. Department of Health (2005). Information for the palliative care sector: Healthcare resource groups, Payment by Results, HM Treasury’s cross cutting review. London: Department of Health. Department of Health (2007). Cancer reform strategy. London: Department of Health. Department of Health (2008a). High quality care for all: NHS next stage review final report. London: The Stationery Office.

247

Department of Health (2008b). End of life care strategy: Promoting high quality care for all adults at the end of life. London: Department of Health. Department of Health (2010). Equity and excellence: Liberating the NHS. London: The Stationery Office. Department of Health (2011). Improving outcomes: A strategy for cancer. London: Department of Health. Department of Health and Social Security (1973). Care of the dying: Proceedings of a national symposium held on 29 November 1972. London: Her Majesty's Stationery Office. Desmet, M., Zylicz, Z. & Van Hellenberg Hubar, E.J.M. (1991). Argumenten voor hospice terminale thuiszorg. Zeist: Landelijke Stichting Elckerlijc. Diamond, J. & Robinson, J.A. (Eds.). (2010). Natural experiments of history. Cambridge: The Belknap Press of Harvard University Press. Dingemans, P.J.M., Schrijvers, A.J.P., Brinkers, M. & Smits, M. (1994). Terminale thuiszorg in grote steden: Een verkennende studie naar kwaliteit. Medisch Contact, 49(4), 135-138. DirectResearch (2016). VPTZ Registratie 2015. Amersfoort: VPTZ Nederland. Dolowitz, D.P. & Marsh, D. (1996). Who learns what from whom: A review of the policy transfer literature. Political studies, XLIV(2), 343-357. Dolowitz, D.P. (Ed.). (2000). Policy transfer and British social policy: Learning from the USA? Buckingham: Open University Press. Dols, W.P.M. (2001). Stichting Vrijwilligers Terminale Zorg: Bestuursagenda 2001. Utrecht: Stichting Vrijwilligers Terminale Zorg. Dols, W.P.M. & Kerkhoff, A.H.M. (2008). De Algemene Wet Bijzondere Ziektekosten: Debatten en ontwikkelingen vanaf 1987. In Companje, K.P. (Ed.). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880-2006 (pp.795-880). Amsterdam: Aksant. Donaldson, L. (2011). Presentation ‘Leadership in the NHS: Reflections of a Chief Medical Officer’ (4 April). London: King's Fund. Dorrepaal, K.L. (1989). Pijn bij patiënten met kanker. Meppel: Krips Repro. Dowbiggin, I. (2001). 'A prey on normal people': C. Killick Millard and the euthanasia movement in Great Britain, 1930-55. Journal of Contemporary History, 36(1), 59-85. Dowbiggin, I. (2003). A merciful end: The euthanasia movement in modern America. Oxford: Oxford University Press. Dowbiggin, I. (2005). A concise history of euthanasia: Life, death, God and medicine. Lanham: Rowman & Littlefield Publishers. Downie, P.A. (1973). Havens of peace. Nursing Times, 69(33), 1068-1070. Doyle, B.M. (2014). The politics of hospital provision in early twentieth-century Britain. London: Routledge. Doyle, D., Hanks, G.W.C. & MacDonald, N. (Eds.). (1993). Oxford textbook of palliative medicine. Oxford: Oxford University Press. Doyle, D. (2005). Palliative medicine: The first 18 years of a new sub-specialty of General Medicine. Journal of the Royal College of Physicians of Edinburgh, 35(3), 199-205. Du Boulay, S. & Rankin, M. (2007). Cicely Saunders: The founder of the modern hospice movement. London: SPCK. Dunlop, R. (1993). Wider applications of palliative care. In Saunders, C. & Sykes, N. (Eds.). The management of terminal malignant disease (pp.287-296). London: Edward Arnold. Dutch Hospital Data (2013). Kengetallen Nederlandse ziekenhuizen 2012. Utrecht: Dutch Hospital Data.

248

Dye, T.R. (1975). Understanding public policy. Englewood Cliffs: Prentice-Hall. East Kent Federation of CCGs (2014). End of life care strategy 2014-2016: Promoting high quality care for all adults at the end of life: East Kent Federation of CCGs. Economist Intelligence Unit (2010). The quality of death: Ranking end-of-life care across the world. London: The Economist Intelligence Unit. Economist Intelligence Unit (2015). The 2015 Quality of Death Index: Ranking palliative care across the world. London: The Economist Intelligence Unit. Edwards, B. (1992). Achievements and challenges. In Griffin, J. (Ed.). Palliative care for all: Directions for the decade. Papers from a conference held in London on 12 and 13 November 1992 (pp.33-35). London: Cancer Relief Macmillan Fund. Edwards, B. & Fall, M. (2005). The executive years of the NHS: The England account 1985-2003. Abingdon: Radcliffe. Edwards, G. (1980). Richard Copley Christie and the beginnings of Christie Hospital. A paper read at Christie Hospital and Holt Radium Institute on Tuesday October 14th 1980. Edwards, N. (2011). England. In Saltman, R.B., Durán, A. & Dubois, H.F.W. (Eds.). Governing public hospitals: Reform strategies and the movement towards institutional autonomy (pp.113-140). London: European Observatory on Health Systems and Policies. Eerste hospice bij Zon & Schild. (2011, February 18). Nederlands Dagblad. Eind van het leven vergt extra zorg. (1985, June 13). Het Vrije Volk, p.17. End of Life Care Strategy Group (2012). Milton Keynes adult end of life care strategy 2012-15. Enkelaar, J. (1999). Terminus: Dr. Ben Zylicz en de kunst van het sterven. Zutphen: Plantaan. Esmeijer, A. & Geerts, V. (1992). Kruiselings door de tijd: Van kruisvereniging tot thuiszorgorganisatie in Midden-Brabant. Tilburg: Regionale Kruisvereniging Midden-Brabant. Ettelt, S., Mays, N. & Nolte, E. (2013). Policy-research linkage: What we have learned from providing a rapid response facility for international healthcare comparisons to the Department of Health in England. Evidence & Policy, 9(2), 245-254. Etzioni, A. (1971). Policy research. The American Sociologist, 6(8), 8-12. European Public Health Committee (1981). Problems related to death. Care for the dying: Final report. Strasbourg: Council of Europe. Euthanasie is in geval van coma geen 'normaal medisch handelen'. (1992, March 28). Nederlands Dagblad, p.1. Evans, M. (2009). Policy transfer in critical perspective. Policy Studies, 30(3), 243-268. Expert Advisory Group on Cancer (1995). A policy framework for commissioning cancer services: Guidance for purchasers and providers of cancer services. London: Department of Health & Welsh Office. Exworthy, M., Peckham, S., Powell, M. & Hann, A. (Eds.). (2012). Shaping health policy: Case study methods and analysis. Bristol: Policy Press. Fallon, M. & Smyth, J. (2008). Terminology: The historical perspective, evolution and current usage - room for confusion? European Journal of Cancer, 44(8), 1069- 1071. Feifel, H. (Ed.). (1959). The meaning of death. New York: McGraw-Hill. Felling, A., Peters, J. & Scheepers, P. (Eds.). (2000). Individualisering in Nederland aan het einde van de twintigste eeuw: Empirisch onderzoek naar omstreden hypotheses. Assen: Van Gorcum. Field, D. & James, N. (1993). Where and how people die. In Clark, D. (Ed.). The future for palliative care: Issues of policy and practice (pp.6-29). Buckingham: Open University Press. Field, D. & Addington-Hall, J. (1999). Extending specialist palliative care to all? Social

249

Science & Medicine, 48(9), 1271-1280. Financieel jaarverslag 1995 STSB. (1996, April 9). De Gelderlander. Financiering thuiszorg is onlogisch. (1989, November 18). NRC Handelsblad, p.2. Finlay, I. (2001). UK strategies for palliative care. Journal of the Royal Society of Medicine, 94(9), 437-441. Forber, J.E. (1931). Incurable cancer: An investigation of hospital patients in eastern London. London: H.M.S.O. Ford, G.R. (1998). Evolution and development of hospice and specialist palliative care services. Clinical Oncology, 10(1), 50-55. Francke, A.L., Persoon, A., Temmink, D. & Kerkstra, A. (1997). Palliatieve zorg in Nederland: Een inventarisatiestudie naar palliatieve zorg, deskundigheidsbevordering en zorg voor zorgenden. Utrecht: NIVEL. Francke, A.L. & Kerkstra, A. (2000). Palliative care services in the Netherlands: A descriptive study. Patient Education and Counseling, 41(1), 23-33. Frederickson, G.M. (1985). Giving a comparative dimension to American history: Problems and opportunities. Journal of Interdisciplinary History, 16(1), 107- 110. Fredrickson, G.M. (1980). Comparative history. In Kammen, M. (Ed.). The past before us: Contemporary historical writing in the United States (pp.457-473). Ithaca: Cornell University Press. Fredrickson, G.M. (1995). From exceptionalism to variability: Recent developments in cross-national comparative history. Journal of American History, 82(2), 587- 604. Freeman, R. & Rothgang, H. (2010). Health. In Castles, F.G., Leibfried, S., Lewis, J., Obinger, H. & Pierson, C. (Eds.). The Oxford handbook of the welfare state (pp.367-377). Oxford: Oxford University Press. Freidemann, N. & Jaspers, B. (2003). Is palliative care synonymous with end-of-life care? European Journal of Palliative Care, 10(6), 223. Frewer, A. & Eickhoff, C. (Eds.). (2000). >>Euthanasie<< und die aktuelle Sterbehilfe- debatte: Die historischen Hintergründe medizinischer Ethik. Frankfurt: Campus Verlag. Galesloot, C., Brinkman-Stoppelenburg, A., Klinkenberg, M., Van der Heide, A. & Baar, F.P.M. (2013). Enquête stand van zaken palliatieve zorg in Nederlandse ziekenhuizen: Verslag van een inventarisatie bij ziekenhuizen in Nederland door IKNL, Leerhuizen Palliatieve Zorg en het Erasmus MC. Gassert, P. (2012). Transnationale Geschichte. In Bösch, F. & Danyel, J. (Eds.). Zeitgeschichte: Konzepte und Methoden (pp.445-462). Göttingen: Vandenhoeck & Ruprecht. Geen barrière in palliatieve zorg. (2016, January 12). Reformatorisch Dagblad, p.4. Geilenkirchen, H. (2008, December 22). Plan voor hospice in Zwolle. Zwolse Courant, p.18. Gersons-Wolfensberger, D.C.M. (1992). Het advies van de Gezondheidsraad. In Kraaipoel, R.J. (Ed.). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad (pp.12-17). Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Gezondheidsraad (1982). Advies inzake euthanasie. 's-Gravenhage: Staatsuitgeverij. Gezondheidsraad (1984a). Deeladvies 5 inzake bedrijfskundige aspecten: Behorende bij het Advies inzake radiotherapie. 's-Gravenhage: Staatsuitgeverij. Gezondheidsraad (1984b). Deeladvies 7 inzake landelijke organisatie kankerbehandeling: Behorende bij het Advies inzake radiotherapie. 's- Gravenhage: Staatsuitgeverij. Gezondheidsraad (1986). Advies inzake pijnbehandeling. 's-Gravenhage: Staatsuitgeverij.

250

Gezondheidsraad (1991). Thuiszorg voor patiënten met kanker. Den Haag: Gezondheidsraad. Gezondheidsraad (2008). De radiotherapie belicht: Een vooruitblik tot 2015. Den Haag: Gezondheidsraad. Giddens, A. (1998). The Third Way: The renewal of social democracy. Cambridge: Polity Press. Giebing, H. (2013). Verpleegkundige kwaliteitsbewaking en -bevordering in historisch perspectief. In Aan de Stegge, C. & Van Tilburg, C. (Eds.). Helpen en niet schaden: Uit de geschiedenis van verpleegkunde en medische zorg (pp.143- 152). Antwerpen: Garant. Gildea, R. & Simonin, A. (Eds.). (2008). Writing contemporary history. London: Hodder Education. Glaser, B.G. & Strauss, A.L. (1965). Awareness of dying. Chicago: Aldine Publising Company. Goldin, G. (1981). A protohospice at the turn of the century: St. Luke's House, London, from 1893 to 1921. Journal of the History of Medicine and Allied Sciences, XXXVI(4), 383-415. Goodin, R.E. & Tilly, C. (Eds.). (2006). The Oxford handbook of contextual political analysis. Oxford: Oxford University Press. Gorsky, M. & Mohan, J. (2006). Mutualism and health care: British hospital contributory schemes in the twentieth century. Manchester: Manchester University Press. Gorsky, M. (2008). The British National Health Service 1948-2008: A review of the historiography. Social History of Medicine, 21(3), 437-460. Gorsky, M. (2011). The political economy of health care in the nineteenth and twentieth centuries. In Jackson, M. (Ed.). The Oxford handbook of the history of medicine (pp.429-449). Oxford: Oxford University Press. Gorsky, M. (2013). 'Searching for the people in charge': Appraising the 1983 Griffiths NHS management inquiry. Medical History, 57(1), 87-107. Graham, F. & Clark, D. (2005). The syringe driver and the subcutaneous route in palliative care: The inventor, the history and the implications. Journal of Pain and Symptom Management, 29(1), 32-40. Graham, O.L. (2011). Robert Kelley and the pursuit of useful history. Journal of Policy History, 23(3), 429-437. Greener, I. (2009). Healthcare in the UK: Understanding continuity and change. Bristol: Policy Press. Greer, S.L. (2004). Territorial politics and health policy: UK health policy in comparative perspective. Manchester: Manchester University Press. Greer, S.L. (2005). The territorial bases of health policymaking in the UK after devolution. Regional and Federal Studies, 15(4), 501-518. Griffin, J. (1992). Introduction. In Griffin, J. (Ed.). Palliative care for all: Directions for the decade. Papers from a conference held in London on 12 and 13 November 1992 (pp.5-6). London: Cancer Relief Macmillan Fund. Griffiths, J., Bood, A. & Weyers, H. (1998). Euthanasia & law in the Netherlands. Amsterdam: Amsterdam University Press. Griffiths, J., Weyers, H. & Adams, M. (2008). Euthanasia and law in Europe. Oxford: Hart Publisher. Groei hospices neemt af. (2004, November 11). Algemeen Dagblad, p.5. Groeneveld, F. (1994, April 19). Een vredige dood in een 'bijna-thuis-huis'. NRC Handelsblad, p.2. Gronemeyer, R., Fink, M., Globisch, M. & Schumann, F. (2004). Helfen am Ende des Lebens: Hospizarbeit und Palliative Care in Europa. Wuppertal: Der Hospiz Verlag.

251

Grossberg, M. (1979). A report of the conference on the history of American public policy. The Public Historian, 1(2), 23-33. Guldi, J. & Armitage, D. (2014). The history manifesto. Cambridge: Cambridge University Press. Gunst, J. (2015, January 3). Zorg in het teken van het naderende einde. Reformatorisch Dagblad, p.6. Gusterson, F.R. (s.a.). The history of St Barnabas' home. Worthing. Haal verpleegkundige en melkboer terug. (2016, July 5). Nederlands Dagblad, pp.4-5. Haas-Berger, R.M. (1992). Thuiszorg van chronisch zieken. In Kraaipoel, R.J. (Ed.). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad (pp.8-11). Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Haas, S. (2012). Theoriemodelle der Zeitgeschichte. In Bösch, F. & Danyel, J. (Eds.). Zeitgeschichte: Konzepte und Methoden (pp.67-83). Göttingen: Vandenhoeck & Ruprecht. Hacker, J.S. (2004). Dismantling the health care state? Political institutions, public policies and the comparative politics of health reform. Journal of Political Sciences, 34(4), 693-724. Hacker, J.S. (2005a). Bringing the welfare state back in: The promise (and perils) of the new social welfare history. In Zelizer, J.E. (Ed.). New directions in policy history (pp.125-154). Pennsylvania: The Pennsylvania State University Press. Hacker, J.S. (2005b). Bringing the welfare state back in: The promise (and perils) of the new social welfare history. Journal of Policy History, 17(1), 125-154. Hageman, E. (2007, April 4). Joke van Calcar 1924-2007. Trouw, p.5. Ham, C. (2004). Health policy in Britain: The politics and organisation of the National Health Service (5 ed.). Basingstoke: Palgrave Macmillan. Ham, C. (2009). Health policy in Britain (6 ed.). Basingstoke: Palgrave Macmillan. Hamans, P. (1991, November 30). Met de vrijwilliger op weg naar het einde. Limburgs Dagblad, p.33. Hancock, S. (1973). Address by miss Sheila Hancock. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.13-15). London: Her Majesty's Stationery Office. Hancock, S., Saunders, C., Anderson, W.F., Wilkes, E., Smithers, D., Gibson, R., Daniel, M.P., McTrusty, J., McNulty, B.J., Mitchell, W. & Porter, K.R.O. (1973). Care of the dying. British Medical Journal, 5844(1), 29-41. Hannessen, H.J. & Sliedrecht, A. (1984). Het COZ in de praktijk. In De Wolff, L.J. (Ed.). De prijs voor gezondheid: Het Centraal Orgaan Ziekenhuistarieven 1965 - 1982 (pp.279-305). Baarn: Ambo. Harrison, S. & McDonald, R. (2008). The politics of healthcare in Britain. Los Angeles: SAGE Publications. Hartenkreet over schrijnende situatie in verpleeghuizen. (1998, May 2). Trouw, p.3. Hasselaar, J. & Payne, S. (Eds.). (2016). Integrated palliative care. Nijmegen: Radboud University Medical Center. Haupt, H.-G. & Kocka, J. (1996). Geschichte und Vergleich: Ansätze und Ergebnisse international vergleichender Geschichtsschreibung. Frankfurt: Campus Verlag. Haupt, H.-G. (2004). Comparative history. In Smelser, N.J. & Baltes, P.B. (Eds.). International encyclopedia of the social & behavioral sciences (pp.2397-2403). Oxford: Elsevier Science. Haupt, H.-G. & Kocka, J. (2004). Comparative history: Methods, aims, problems. In Cohen, D. & O'Connor, M. (Eds.). Comparison and history: Europe in cross- national perspective (pp.23-39). New York: Routledge. Haupt, H.-G. (2007). Comparative history: A contested method. Historisk Tidskrift,

252

127(4), 697-716. Haupt, H.-G. & Kocka, J. (Eds.). (2009). Comparative and transnational history: Central European approaches and new perspectives. New York: Berghahn Books. Haverkate, J. (1991, May 25). Terminale thuiszorg. Leeuwarder Courant, p.7. Helderman, J.-K., Schut, F.T., Van der Grinten, T.E.D. & Van de Ven, W.P.M.M. (2005). Market-oriented health care reforms and policy learning in the Netherlands. Journal of Health Politics, Policy and Law, 30(1-2), 189-209. Hellema, D. (2012). Nederland en de jaren zeventig. Amsterdam: Boom. Helms, H. (1992, September 1). Stichting Kuria opent vandaag hospice. Nederlands Dagblad, p.2. Help the Hospices (2014). The commissioning of hospice care in England in 2014/15. London: Help the Hospices. Hendin, H. (1997). Seduced by death: Doctors, patients, and the Dutch cure. New York: W.W. Norton & Company. Hendriks, R., Bal, R. & Bijker, W.E. (2004). Beyond the species barrier: The Health Council of the Netherlands, legitimacy, and the making of objectivity. Social Epistemology, 18(2-3), 271-299. Herbergs, B. (1985, October 10). De Terp was maar topje van ijsberg. Het Vrije Volk, p.4. Herbergs, B. (1988, September 1). Thuishulp voor stervenden. Het Vrije Volk Weekeditie, p.9. Herbert, R. (1993). The modern British hospice movement: Its development since 1967. Leicester: De Montfort University. Het gaat hier om de kwaliteit van sterven. (2002, April 8). Rijn en Gouwe, p.5. Hewison, R. & Holden, J. (2007). A short history of the Calouste Gulbenkian Foundation’s UK branch, 1956-2006. London: Calouste Gulbenkian Foundation. Higginson, I. (1993). Palliative care: A review of past changes and future trends. Journal of Public Health Medicine, 15(1), 3-8. Hillier, R. (1988). Palliative medicine: A new specialty. British Medical Journal, 297(6653), 874-875. Hinton, J. (1967). Dying. Harmondsworth: Penguin Books. Hochgrebe, P.G.W. (2005). Legalisierung der aktiven Sterbehilfe in der Bundesrepublik Deutschland? Eine Analyse der aktuellen Diskussion unter medizinischen, philosophisch-ethischen und religiös-theologischen Aspekten. Norderstedt: Books on Demand. Hockley, J. & Clark, D. (Eds.). (2002). Palliative care for older people in care homes. Buckingham: Open University Press. Hoffman, H. (1975, November 15). Profiel van Kees Trimbos. Het Vrije Volk, p.19. Hoffmann, M. (2005). Het sterven van de 'eigen' dood: De zorg voor stervenden in Nederland tussen 1970 en 2000. Amsterdam: Universiteit van Amsterdam. Hogwood, B.W. & Peters, B.G. (1983). Policy dynamics. Brighton: Wheatsheaf Books. Hogwood, B.W. & Gunn, L.A. (1985). Policy analysis for the real world. Oxford: Oxford University Press. Holford, J.M. (1973). Terminal care. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.1-6). London: Her Majesty's Stationery Office. Hoogenboom, M. (2004). Standenstrijd en zekerheid: Een geschiedenis van oude orde en sociale zorg in Nederland. Amsterdam: Boom. Hoogerkamp, G. (1992). Euthanasie op het Binnenhof: De euthanasiediscussie in politiek-historisch perspectief (1978 - 1992). Utrecht: Vakgroep Geschiedenis der Rijksuniversiteit te Utrecht. Hoogerwerf, A. (1988). Terminale zorg: Facetten van stervenshulp in het verpleeghuis.

253

Medisch Contact, 43(45), 1385-1389. Hospice. (1991, November 7). Algemeen Dagblad, p.5. Hospice UK & Together for Short Lives (2015). Commissioning and statutory funding arrangements for hospices in England: Survey results 2015. London: Hospice UK and Together for Short Lives. Hospice UK (2016). A low priority? How local health and care plans overlook the needs of dying people. London: Hospice UK. Hospicehuizen. (1991, September 27). Nederlands Dagblad, p.7. Hospices in problemen. (2016, January 23). Algemeen Dagblad, p.3. Howlett, M. & Rayner, J. (2006). Understanding the historical turn in the policy sciences: A critique of stochastic, narrative, path dependency and process- sequencing models of policy-making over time. Policy Sciences 39(1), 1-18. Howlett, M. (2009). Process sequencing policy dynamics: Beyond homeostasis and path dependency. Journal of Public Policy, 29(3), 241-262. Howlett, M., Ramesh, M. & Perl, A. (2009). Studying public policy: Policy cycles & policy subsystems. Oxford: Oxford University Press. Howlett, M. (2011). Designing public policies: Principles and instruments. London: Routledge. Hughes-Hallett, T., Craft, A. & Davies, C. (2011). Creating a fair and transparent funding system: The final report of the Palliative Care Funding Review: Palliative Care Funding Review. Hughes, H.L.G. (1960). '... Peace at the last'. A survey of terminal care in the United Kingdom: A report to the Calouste Gulbenkian Foundation. London: United Kingdom and British Commonwealth Branch. Hughes, H.S. (1963). The scholar cornered: Is contemporary history real history? The American Scholar, 32(4), 516-525. Huisarts moet spil zijn in palliatieve zorg. (2011, April 28). Reformatorisch Dagblad, p.3. Huizinga, J. (1991). Memorabele mensen en momenten uit de geschiedenis van de intramurale gezondheidszorg. Lochem: De Tijdstroom. Hulp bij sterven in Amsterdam nog een probleem. (1980, October 4). NRC Handelsblad, p.3. Hulp van adel. (2009, June 6). De Telegraaf, p.3. Humphreys, C. (2001). ''Waiting for the last summons'': The establishment of the first hospices in England 1878-1914. Mortality, 6(2), 146-166. Hydra, T. (1978, November 27). TV commentaar. Groot uur U: Begeleiding van stervenden. Nieuwe Leidsche Courant. Illich, I. (1976). Limits to medicine. Medical nemesis: The expropriation of health. London: Penguin Books. In Nederland moet men maar sterven in de badkamer. (1975, November 28). Het Vrije Volk, p.3. Iriye, A. (2004). Transnational history. Contemporary European History, 13(2), 211- 222. Iriye, A. (2007). The transnational turn. Diplomatic History, 31(3), 373-376. Iriye, A. (2013). Global and transnational history: The past, present, and future. Basingstoke: Palgrave. Jacobs, M. & Zelizer, J.E. (2003). The democratic experiment: New directions in American political history. In Jacobs, M., Novak, W.J. & Zelizer, J.E. (Eds.). The democratic experiment: New directions in American political history (pp.1-19). Princeton: Princeton University Press. Jalland, P. (1996). Death in the Victorian family. Oxford: Oxford University Press. Jalland, P. (2010). Death in war and peace: A history of loss & grief in England, 1914- 1970. Oxford: Oxford University Press.

254

James, N. & Field, D. (1992). The routinization of hospice: Charisma and bureaucratization. Social Science & Medicine, 34(12), 1363-1375. James, N. (1994). From vision to system: The maturing of the hospice movement. In Lee, R. & Morgan, D. (Eds.). Death rites: Law and ethics at the end of life (pp.102-130). London: Routledge. Janssen, M. (1987a, December 24). De zorgzame samenleving is een leugen. De Telegraaf. Janssen, R.T.J.M. (1987b). De Ziekenfondsraad. In Janssen, R., Kocken, P. & Van der Made, J. (Eds.). Externe adviesorganen in de gezondheidszorg: Het grijze circuit belicht (pp.131-138). Lochem: De Tijdstroom. Janssens, R. (2000). Europees Pallium-project: Vergelijkend onderzoek naar zorginhoud en zorgethiek. Pallium: Tijdschrift over Palliatieve Zorg, 2(1), 15-18. Janssens, R. (2001). Palliative care: Concepts and ethics. Nijmegen: Nijmegen University Press. Janssens, R. & Ten Have, H. (2001). The concept of palliative care in the Netherlands. Palliative Medicine, 15(6), 481-486. Jarman, H. & Greer, S.L. (2010). In the eye of the storm: Civil servants and managers in the UK Department of Health. Social Policy & Administration, 44(2), 172-192. Jaspers, B. & Schindler, T. (2004). Stand der Palliativmedizin und Hospizarbeit in Deutschland und im Vergleich zu ausgewählten Staaten (Belgien, Frankreich, Großbritannien, Niederlande, Norwegen, Österreich, Polen, Schweden, Schweiz, Spanien). Berlin: Enquete-Kommission des Bundestages „Ethik und Recht der Modernen Medizin“. Jefferys, M., Troy, K., Slawik, N. & Lightfoot, E. (2007). Issues in bridging the divide between policymakers and researchers. Saint Paul: University of Minnesota. Jeffrey, D. (2009). Against physician assisted suicide: A palliative care perspective. Oxford: Radcliffe. John, P., Bertelli, A., Jennings, W. & Bevan, S. (2013). Policy agendas in British politics. Basingstoke: Palgrave Macmillan. Johnson, I.S., Rogers, C., Biswas, B. & Ahmedzai, S. (1990). What do hospices do? A survey of hospices in the United Kingdom and Republic of Ireland. British Medical Journal, 300(6727), 791-793. Jonker, E. (2001). Historie: Over de blijvende behoefte aan geschiedenis. Assen: Van Gorcum. Jordan, I. (2007). Hospizbewegung in Deutschland und den Niederlanden: Palliativversorgung und Selbstbestimmung am Lebensende. Frankfurt: Campus Verlag. Jordanova, L. (2006). History in practice. London: Hodder Arnold. Jürgens, H. (2014). Na de val: Nederland na 1989. Nijmegen: Uitgeverij Vantilt. Kabinet geeft impuls aan palliatieve zorg. (2013, December 12). Reformatorisch Dagblad, p.4. Kabinet kiest tot spijt van CDA voor thuiszorg. (1992, April 1). Trouw, p.3. Kabinet zoekt alternatieven. (1996, November 27). Het Parool, p.2. Kaelble, H. (1999). Der historische Vergleich: Eine Einführung zum 19. und 20. Jahrhundert. Frankfurt: Campus Verlag. Kaelble, H. & Schriewer, J. (Eds.). (2003). Vergleich und Transfer: Komparatistik in den Sozial-, Geschichts- und Kulturwissenschaften. Frankfurt: Campus Verlag. Kamer vraagt naar staat palliatieve zorg. (2014, November 10). Reformatorisch Dagblad, p.4. Kappelhof, A.C.M. (1990). Tussen aansporen en opsporen: Geschiedenis van 25 jaar Staatstoezicht op de Volksgezondheid, 1965-1990. 's-Gravenhage: SDU Uitgeverij. Kearney, M. (1989). Dying in England: The role of hospice. In Vos-Maan, M. (Ed.).

255

Ruimte voor sterven: Weergave van het gelijknamige symposium georganiseerd door Studium Generale, Erasmus Universiteit Rotterdam (pp.19-26). Rotterdam: Bureau Studium Generale. Kearsley, G.D. (1984). Hospices. British Medical Journal, 288(6428), 1453. Keizer, B. (1996). Dancing with mister D: Notes on life and death. London: Doubleday. Keizer, B. (1999, April 22). Het regent in die hospices morfine. Trouw. Keizer, B. (2002). Alles wordt niets: Columns & essays. Amsterdam: Sun. Kellehear, A. (2007). A social history of dying. Cambridge: Cambridge University Press. Kelley, R. (1978). Public history: Its origins, nature, and prospects. The Public Historian, 1(1), 16-28. Kelley, R. (1988a). Foreword. The history of public policy: Does it have a distinctive character and method? In Critchlow, D.T. & Hawley, E.W. (Eds.). Federal social policy: The historical dimension (pp.1-7). Pennsylvania: The Pennsylvania State University Press. Kelley, R. (1988b). The idea of policy history. The Public Historian, 10(1), 35-39. Kemp, N.D.A. (2002). 'Merciful release': The history of the British euthanasia movement. Manchester: Manchester University Press. Kennedy, J. (1995). Nieuw Babylon in aanbouw: Nederland in de jaren zestig. Amsterdam: Boom. Kennedy, J. (2002). Een weloverwogen dood: Euthanasie in Nederland. Amsterdam: Uitgeverij Bert Bakker. Kennedy, J. (2009). Bezielende verbanden: Gedachten over religie, politiek en maatschappij in het moderne Nederland. Amsterdam: Uitgeverij Bert Bakker. Kennedy, J. (2014). Van 'staatskerk' naar 'straatkerk': De veranderende publieke rol van Nederlandse Protestantse kerken sinds 1848. In Van Dam, P., Kennedy, J. & Wielenga, F. (Eds.). Achter de zuilen: Op zoek naar religie in naoorlogs Nederland (pp.57-78). Amsterdam: Amsterdam University Press. Kennedy, S., Seymour, J.E., Almack, K. & Cox, K. (2009). Key stakeholders' experiences and views of the NHS End of Life Care Programme: Findings from a national evaluation. Palliative Medicine, 23(4), 283-294. Kerkhoff, A.H.M. & Dols, W.P.M. (2008). De Algemene Wet Bijzondere Ziektekosten: Debatten en ontwikkelingen tot 1987. In Companje, K.P. (Ed.). Tussen volksverzekering en vrije markt: Verzekering van zorg op het snijvlak van sociale verzekering en gezondheidszorg 1880-2006 (pp.709-794). Amsterdam: Aksant. Kerngroep Palliatieve Zorg (2012). Visiedocument palliatieve zorg, 14 mei 2012. Bunnik: Agora. Kerr, D. (1992). Alfred Worcester: A pioneer in palliative care. American Journal of Hospice and Palliative Care, 9(13), 13-38. Kettunen, P. & Petersen, K. (Eds.). (2011). Beyond welfare state models: Transnational historical perspectives on social policy. Cheltenham: Edward Elgar. Keunen, M. (2004, September 8). Stichting bijna-thuis-huis wil hospice openen. Eindhovens Dagblad. Klaver, H. (1988, August 30). Ziekenfonds Groningen breidt de thuiszorg uit. Nieuwsblad van het Noorden, p.13. Klein Poelhuis, E.H. (1985). Interimrapportage evaluatie onderzoek terminale thuiszorg Amsterdam: Verslag over de periode 1 april 1984 - 1 oktober 1984. Amsterdam: Stichting Terminale Thuiszorg Amsterdam. Klein, R. & Dixon, J. (2000). Cash bonanza for NHS: The price is centralisation. British Medical Journal, 320(7239), 883-884. Klein, R. (2013). The new politics of the NHS: From creation to reinvention. London: Radcliffe.

256

Knelpunten bij sterven thuis verder opheffen. (1985, March 27). Nederlands Dagblad, p.4. Knoop, A. & Schuiringa, K. (1998). Door allen voor allen, een heerlijk streven! Een kleine geschiedenis van het kruiswerk in Nederland naar aanleiding van de herbouw van een wijkgebouw van het Groene Kruis in het Nederlands Openluchtmuseum. Arnhem: Nederlands Openluchtmuseum. Knudsen, A.-C.L. & Gram-Skjoldager, K. (2014). Historiography and narration in transnational history. Journal of Global History, 9(1), 143-161. Kocka, J. (1999). Asymmetrical historical comparison: The case of the German sonderweg. History and Theory, 38(1), 40-50. Kocka, J. (2003). Comparison and beyond. History and Theory, 42(1), 39-44. Kocka, J. (2009). Comparative history: Methodology and ethos. East Central Europe, 36(1), 12-19. Kok, R. & Kool, G. (2016, January 30). Geen geld voor dokter bij hospice. AD - Groene Hart, p.5. Kolchin, P. (1982). Comparing American history. Reviews in American History, 10(4), 64-81. Koster, P. (1989a, January 19). Hulp bij thuis sterven zal verdubbelen. Het Vrije Volk, p.3. Koster, P. (1989b, January 28). Je leven uitleven zoals je zelf wilt. Het Vrije Volk, p.20. Kraaipoel, R.J. (1992a). Inleiding. In Kraaipoel, R.J. (Ed.). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad (pp.6-7). Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Kraaipoel, R.J. (Ed.). (1992b). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad. Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Kreulen, E. (2011, February 9). Gespecialiseerde hospice voor psychiatrisch patiënten. Trouw. Kroneman, M., Boerma, W., Van den Berg, M., Groenewegen, P., De Jong, J. & Van Ginneken, E. (2016). The Netherlands: Health system review. London: European Observatory on Health Systems and Policies. Kronenberg, H., Van Rooij, J. & Bart, H. (2000). De ontwikkelingen in de vrijwillige terminale zorg 1995-1998. Bunnik: Landelijk Steunpunt Vrijwilligers Terminale Zorg. Kruithof, H. & Govaart, M.-M. (1994). Op het spoor: Financiering. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Kruithof, H. & Visser, K. (1994). Op het spoor: Een regionale aanpak. Een uitdaging voor plaatselijke organisaties. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Kübler-Ross, E. (1969). On death and dying: What the dying have to teach doctors, nurses, clergy and their own families. New York: Collier-Macmillan. Kuiken, A. (2016, July 4). Het personeel kan niet omgaan met complexe ziektebeelden. Trouw, pp.6-7. Kuiken, A. & Pronk, I. (2016a, July 5). Ik sta hier bekend als de bonte hond. Trouw. Kuiken, A. & Pronk, I. (2016b, July 9). Even vlug-vlug voor iemand zorgen, dat kan niet meer. Trouw, pp.2-3. Kuin, A., Courtens, A.M., Deliens, L., Vernooij-Dassen, M.J.F.J., Van Zuylen, L., Van der Linden, B. & Van der Wal, G. (2004). Palliative care consultation in the Netherlands: A nationwide evaluation study. Journal of Pain and Symptom Management, 27(1), 53-60. Kuipers, H. (1994, March 16). Groningen krijgt huis om waardig te sterven. Nieuwsblad van het Noorden, p.3. Kuitert, H. & Van Leeuwen, E. (2000). A religious argument in favor of euthanasia and

257

assisted suicide. In Thomasma, D.C., Kimbrough-Kushner, T., Kimsma, G.K. & Ciesielski-Carlucci, C. (Eds.). Asking to die: Inside the Dutch debate about euthanasia (pp.221-226). New York: Kluwer Academic Publishers. Kuitert, H.M. (1981). Een gewenste dood: Euthanasie als moreel en godsdienstig probleem. Baarn: Ten Have. Kunkeler, J. (1971, November 23). Rotterdamse hoogleraar bepleit: Apart ziekenhuis voor hopeloze kankerpatiënt. De Tijd, p.3. Laatste kans. (2011, June 10). Reformatorisch Dagblad, p.1. Lack, S. & Lamerton, R. (1975). The symposium. In Lack, S. & Lamerton, R. (Eds.). The hour of our death: A record of the Conference on the care of the dying held in London, 1973 (pp.35-49). London: Geoffrey Chapman. Lamers, W.M. (2002). Defining hospice and palliative care: Some further thoughts. Journal of Pain & Palliative Care Pharmacotherapy, 16(3), 65-71. Lamerton, R. (1975). The need for hospices. Nursing Times, 71(4), 155-157. Lamerton, R. (1986). East End doc: Hospices and the dying. Cambridge: Lutterworth Press. Landelijke werkgroep terminale zorg opgericht (1982). Medisch Contact, 37(33), 997. Larkin, P. (2016). Foreword. In Hasselaar, J. & Payne, S. (Eds.). Integrated palliative care (pp.5-6). Nijmegen: Radboud University Medical Center. Lazenby, M., McCorkle, R. & Sulmasy, D.P. (Eds.). (2014). Safe passage: A global spiritual sourcebook for care at the end of life. Oxford: Oxford University Press. Leadbeater, C. & Garber, J. (2010). Dying for change. London: Demos. Leadership Alliance for the Care of Dying People (2014). One chance to get it right: Improving people’s experience of care in the last few days and hours of life. Leenen, H.J.J. (1987). Euthanasia, assistance to suicide and the law: Developments in the Netherlands. Health Policy, 8(2), 197-206. Legemaate, J. (2004). The Dutch euthanasia act and related issues. Journal of Law and Medicine 11(3), 312-323. Leger des Heils Gelderland (2006). Jaarverslag 2005. Apeldoorn: Leger des Heils. Leger des Heils Gelderland (2007). Jaarverslag 2006. Apeldoorn: Leger des Heils. Leger des Heils Gelderland (2008). Jaarverslag 2007. Apeldoorn: Leger des Heils. Leger des Heils Gelderland (2009). Jaarverslag 2008. Apeldoorn: Leger des Heils. Leger des Heils Gelderland (2010). Jaarverslag 2009. Apeldoorn: Leger des Heils. Leiden krijgt hospice voor jongvolwassenen. (2010, April 10). Trouw. Lewis, M.J. (2007). Medicine and care of the dying: A modern history. Oxford: Oxford University Press. Leyland, P. (2007). The constitution of the United Kingdom: A contextual analysis. Oxford: Hart Publishing. Lieverse, P. (2015, January 10). Het zachte alternatief voor euthanasie. Trouw. Lijphart, A. (1999). Patterns of democracy: Government forms and performance in thirty-six countries. New Haven: Yale University Press. Lindblom, C.E. & Cohen, D.K. (1979). Usable knowledge: Social science and social problem solving. New Haven: Yale University Press. Lister, J. (2008). The NHS after 60: For patients or profits? London: Middlesex University Press. Luister naar wens stervende. (1982, May 11). Het Vrije Volk, p.3. Lunt, B. (1981). Terminal cancer care: Specialist services available in Great Britain in 1980: Wessex Regional Cancer Organisation & University of Southampton. Lunt, B. & Hillier, R. (1981). Terminal care: Present services and future priorities. British Medical Journal, 283(6291), 595-598. Lunt, B. (1982). Terminal cancer care services in Great Britain: The current picture and future developments. In Hill, F. (Ed.). Proceedings from the first National Conference on Hospice Finance and Administration (London - April 1981)

258

(pp.34-45). Lunt, B. (1985). Terminal cancer care services: Recent changes in regional inequalities in Great Britain. Social Science & Medicine, 20(7), 753-759. Maarse, H. & Lodewick, L. (2011). Netherlands. In Saltman, R.B., Durán, A. & Dubois, H.F.W. (Eds.). Governing public hospitals: Reform strategies and the movement towards institutional autonomy (pp.179-199). London: European Observatory on Health Systems and Policies. Maarse, J.A.M. & Jeurissen, P.P. (2016). The policy and politics of the 2015 long-term care reform in the Netherlands. Health Policy, 120(3), 241-245. Mahoney, J. & Rueschemeyer, D. (Eds.). (2003). Comparative historical analysis in the social sciences. Cambridge: Cambridge University Press. Mandelbaum, S. (1991). The past in service to the future. In Mock, D.B. (Ed.). History and public policy (pp.39-53). Malabar: Krieger Publishing Company. Mandemaker, A. (2015, December 29). Hospices niet in financiële nood. Eindhovens Dagblad, p.4. Mandler, P. (2007). The responsibility of the historian. In Jones, H., Östberg, K. & Randeraad, N. (Eds.). Contemporary history on trial: Europe since 1989 and the role of the expert historian (pp.12-25). Manchester: Manchester University Press. Mannes, M. (1973). Last rights. London: Millington. Manning, M. (1984). The hospice alternative: Living with dying. London: Condor Book. Mares, D. (2011). Großbritannien: "Contemporary History" jenseits von Konsens und Niedergang, Version: 1.1. Docupedia-Zeitgeschichte (http://docupedia.de/zg/), 3.6.2011. Marie Curie Memorial Foundation (1985). The Marie Curie Memorial Foundation: A brief history 1948-1984. London: Marie Curie Memorial Foundation. Massey, A. & Pyper, R. (2005). Public management and modernisation in Britain. Basingstoke: Palgrave Macmillan. Materstvedt, L.J., Clarke, J., Ellershaw, J.E., Førde, R., Gravgaard, A.-M.B., Müller- Busch, H.C., Porta i Sales, J. & Rapin, C.-H. (2003). Euthanasia and physician- assisted suicide: A view from an EAPC Ethics Task Force. Palliative Medicine, 17(2), 97-101. Mathew, A., Cowley, S., Bliss, J. & Thistlewood, G. (2003). The development of palliative care in national government policy in England, 1986 - 2000. Palliative Medicine, 17(3), 270-282. Matthews, B. (1980). Setting up terminal care units. Journal of the Royal College of General Practitioners, 30(217), 472-476. May, E.R. (1973). 'Lessons' of the past: The use and misuse of history in American foreign policy. Oxford: Oxford University Press. McGrew, D.M. (2003). Why hospice needs palliative medicine and vice versa. Journal of Palliative Medicine, 6(3), 337-338. McNulty, B.J. (1973). Paper by mrs. B.J. McNulty. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.65-69). London: Her Majesty's Stationery Office. Meer vragen dan antwoorden bij project stervensbegeleiding. (1979, November 6). Het Vrije Volk, p.3. Meghani, S.H. (2004). A concept analysis of palliative care in the United States. Journal of Advanced Nursing, 46(2), 152-161. Meijer van Putten, J.B. (1997). Kwaliteit van de palliatieve zorg schiet tekort. Nederlands Tijdschrift voor Geneeskunde, 141(47), 2318-2319. Meldrum, M.L. (Ed.). (2003). Opioids and pain relief: A historical perspective. Seattle: IASP Press. Mensink, J. & Tunissen, C. (1988). Experiment thuisverpleging in Groningen: Eerste

259

interim-rapportage over de proefperiode van begin september tot eind december 1987. Nijmegen: Instituut voor Toegepaste Sociale Wetenschappen. Merton CCG (2015). Merton CCG end of life care strategy 2014-19. London: NHS Merton Clinical Commissioning Group. Metzler, G. (2004). Einführung in das Studium der Zeitgeschichte. Paderborn: Ferdinand Schöningh. Metzler, G. (2012). Zeitgeschichte - Begriff - Disziplin - Problem. In Bösch, F. & Danyel, J. (Eds.). Zeitgeschichte: Konzepte und Methoden (pp.22-46). Göttingen: Vandenhoeck & Ruprecht. Meyboom, F. (1970). Grepen uit de geschiedenis van zorgen en verzorgen. Amsterdam: Agon Elsevier. Michels, J.J.M. (1988). Terminale zorg: De kankerpatiënt in het verpleeghuis. Medisch Contact, 43(43), 1313-1315. Middelburg-Hebly, M., Galesloot, C., Van Trigt, I. & Jansen-Segers, M. (2014). Palliatieve zorg in beeld. Utrecht: IKNL. Millar, B. (1998). Palliative care for people with non-malignant disease. Nursing Times, 94(48), 52-53. Miltenburg, T. & Ramakers, C. (1988). Experiment thuisverpleging in Amsterdam: Eerste interim-rapportage over de proefperiode van begin september tot eind december 1987. Nijmegen: Instituut voor Toegepaste Sociale Wetenschappen. Miltenburg, T. (1990). Experiment thuisverpleging. Intensieve thuiszorg: Ervaringen uit de proefregio's. Nijmegen: Instituut voor Toegepaste Sociale Wetenschappen. Miltenburg, T. (1992). Intensieve thuiszorg voor kankerpatiënten. In Kraaipoel, R.J. (Ed.). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad (pp.26-31). Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Minister Borst blijft geld voor hospices weigeren. (1996, June 28). Trouw. Minister opent in Nieuwkoop tehuis voor stervenden. (1989, January 26). NRC Handelsblad, p.2. Minister van Volksgezondheid Welzijn en Sport. (2000). Planningsbesluit radiotherapie 2000 (CSZ/ZT/2095183). Staatscourant, pp.21-25. Mistiaen, P. & Francke, A.L. (2004a). Verscheidenheid en capaciteitsbenutting in palliatieve terminale zorgvoorzieningen. Utrecht: NIVEL. Mistiaen, P. & Francke, A.L. (2004b). Monitor palliatieve zorg: Rapport 2004. Utrecht: NIVEL. Mistiaen, P., Van Hasselt, T.J. & Francke, A.L. (2005). Monitor palliatieve zorg: Rapport 2005. Utrecht: NIVEL. Mistiaen, P. & Francke, A.L. (2006). De rol van Zorgkantoren en Netwerken bij de realisatie van palliatieve terminale zorgvoorzieningen. Utrecht: NIVEL. Mistiaen, P., Van Ruth, L. & Francke, A.L. (2006). Monitor palliatieve zorg: Rapport 2006 en bevindingen over drie jaar monitor. Utrecht: NIVEL. Mitchell, W. (1973). Paper by mrs. W. Mitchell. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.70-74). London: Her Majesty's Stationery Office. Mock, D.B. (Ed.). (1991). History and public policy. Malabar: Krieger Publishing Company. Mohan, J. (2003). Voluntarism, municipalism and welfare: The geography of hospital utilization in England in 1938. Transactions of the Institute of British Geographers, 28(1), 56-74. Molenaar, E. (2015, December 4). Directeur hospice blijft knokken. Enkhuizer Courant. Moran, M. (2000). Understanding the welfare state: The case of health care. British Journal of Politics and International Relations, 2(2), 135-160. Mortimer, I. (2009). The dying and the doctors: The medical revolution in

260

seventeenth-century England. Woodbridge: The Boydell Press. Mur-Veeman, I., Hardy, B., Steenbergen, M. & Wistow, G. (2003). Development of integrated care in England and the Netherlands: Managing across public - private boundaries. Health Policy, 65(3), 227-241. Murphy, C.C.S. (1989). From Friedenheim to hospice: A century of cancer hospitals. In Granshaw, L. & Porter, R. (Eds.). The hospital in history (pp.221-241). London: Routledge. Nathaus, K. (2012). Sozialgeschichte und historische Sozialwissenschaft. In Bösch, F. & Danyel, J. (Eds.). Zeitgeschichte: Konzepte und Methoden (pp.204-224). Göttingen: Vandenhoeck & Ruprecht. National Association of Health Authorities and Trusts (1991). Care of people with terminal illness. Birmingham: National Association of Health Authorities and Trusts. National Council for Hospice and Specialist Palliative Care Services (1992a). Guidelines for voluntary hospices contracting with the National Health Service. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1992b). Quality, standards, organisational and clinical audit for hospice and palliative care services. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1993a). Care in the community for people who are terminally ill: Guidelines for Health Authorities and Social Services Departments. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1993b). Needs assessment for hospice and specialist palliative care services: From philosophy to contracts. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1994). Contracting with the National Health Service: Revised guidelines for voluntary hospices. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1995). Specialist palliative care: A statement of definitions. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1996). Palliative care in the hospital setting. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (1999). Briefing: Survey of funding of voluntary hospices. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (2001). Briefing: Supportive and palliative care networks. The what, the when and the how. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Hospice and Specialist Palliative Care Services (2003). Palliative care for adults with non-malignant diseases: Developing a national policy. London: National Council for Hospice and Specialist Palliative Care Services. National Council for Palliative Care (2005a). Briefing bulletin: The palliative care needs of older people. London: National Council for Palliative Care. National Council for Palliative Care (2005b). Focus on care homes: Improving palliative care provision for older people in care homes. London: National Council for Palliative Care. National Council for Palliative Care (2014). The End of Life Care Strategy: New ambitions. London: National Council for Palliative Care.

261

National Health Service: Cooperation between the NHS and the private sector at district level (1983). Lancet, 321(8337), 1323-1324. National Palliative and End of Life Care Partnership (2015). Ambitions for palliative and end of life care: A national framework for local action 2015-2020. Nationale Commissie Chronisch Zieken (1993). Advies vrijwilligerszorg voor chronisch zieken. Zoetermeer: Nationale Commissie Chronisch Zieken. Nationale Raad voor de Volksgezondheid (1985). Advies inzake thuisverpleging. Zoetermeer: Nationale Raad voor de Volksgezondheid. Nationale Raad voor de Volksgezondheid (1990). Advies kwaliteit, organisatie en financiering thuisverpleging. Zoetermeer: Nationale Raad voor de Volksgezondheid. Nederlandse Federatie van Universitaire Medische Centra (2013). Naar acht expertisecentra en één Nationaal Programma Palliatieve Zorg: Visie van de UMC's op de toekomstige palliatieve zorg. Utrecht: NFU. Nederlandse Zorgautoriteit (2006). Algemeen rapport: Uitvoering Ziekenfondswet 2005. Utrecht: Nederlandse Zorgautoriteit. Neuberger, J., Guthrie, C., Aaronovitch, D., Hameed, K., Bonser, T., of Pentegarth, H., Charlesworth-Smith, D., Jackson, E., Cox, D. & Waller, S. (2013). More care, less pathway: A review of the Liverpool Care Pathway. Neustadt, R. (1982). Uses of history in public policy. The History Teacher, 15(4), 503- 507. Neustadt, R. & May, E.R. (1986). Thinking in time: The uses of history for decision makers. New York: The Free Press. Newman, J. (2011). Boundary troubles: Working the academic-policy interface. Policy & Politics, 39(4), 473-484. NHS Croydon Clinical Commissioning Group (2015). End of life care strategy 2015/16 - 2017/18. NHS England (2014a). Actions for end of life care: 2014-2016. Leeds: NHS England. NHS England (2014b). Understanding the new NHS: A guide for everyone working and training within the NHS. London: NHS England. NHS England (2015). Developing a new approach to palliative care funding. Leeds: NHS England. NHS Executive (1996). Executive Letter: A Policy Framework for Commissioning Cancer Services: Palliative Care Services, EL(96)85. NHS Sheffield Clinical Commissioning Group (2015). Sheffield’s end of life care strategy 2015 - 2018. Sheffield: NHS Sheffield Clinical Commissioning Group. NHS Waltham Forest Clinical Commissioning Group (2015). Strategic Framework for End of Life Care in Waltham Forest. NHS West Hampshire Clinical Commissioning Group (2015). West Hampshire CCG & Southampton City CCG end of life care strategy 2015-2020. Nieuw instituut voor terminale zorg afgewezen. (1982, December 24). NRC Handelsblad, p.3. Noordhuis, P. (2009, December 12). Verlossers naast God: Dokters en euthanasie in Nederland Nederlands Dagblad, p.1. NPTN (2000). NPTN tevreden met Rapport Projectgroep. Nieuwsbrief van het Netwerk Palliatieve Zorg voor Terminale Patiënten in Nederland, 2(8), 1. Nullmeier, F. & Kaufmann, F.-X. (2010). Post-war welfare state development. In Castles, F.G., Leibfried, S., Lewis, J., Obinger, H. & Pierson, C. (Eds.). The Oxford handbook of the welfare state (pp.81-101). Oxford: Oxford University Press. O' Dowd, A. (2000). Will hospices just slip quietly away? Nursing Times, 96(27), 28- 29. Onwuteaka-Philipsen, B.D., Van der Heide, A., Koper, D., Keij-Deerenberg, I., Rietjens,

262

J.A.C., Rurup, M.L., Vrakking, A.M., Georges, J.J., Muller, M.T., Van der Wal, G. & Van der Maas, P.J. (2003). Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet, 362(9381), 395-399. Oostveen, M. (2001, November 10). Voorvechters van de euthanasiepraktijk bezinnen zich. NRC Handelsblad, pp.Z1-Z2. Oostveen, M. (2003, May 24). Het grote experiment. NRC Handelsblad, p.29. Oostvogel, F.J.G. (1973). Geriater en euthanasie. Medisch Contact, 28(2), 51-53. Oostvogel, F.J.G. (1974). Stervensbegeleiding van oude(re) mensen. In Immerzeel, J., Heijnen, P., Van Rossum, L., Speth, P. & Swaans, S. (Eds.). Menswaardig sterven (pp.184-191). Bilthoven: Uitgeverij Ambo. Oostvogel, F.J.G. (1979). Terminale zorg. In Lampe, H., Schippers, W. & Grüschke, H. (Eds.). Leefklimaat, privacy, terminale zorg: Verslag van een studiedag van de Nationale Ziekenhuisraad voor medewerkers uit verpleeghuizen (pp.27-37). Utrecht: Nationale Ziekenhuisraad. Oostvogel, F.J.G. (1984). Euthanasie? In Stoeckart, R. (Ed.). Euthanasie en hulp bij zelfdoding in de praktijk (pp.49-54). Deventer: Van Loghum Slaterus. Oostvogel, F.J.G. (1985). Terminale zorg voor de stervende mens in de westerse wereld. In Bruning, H. & Klein Hesselink, J. (Eds.). Omgaan met sterven: Symposium verslagen 14 juni en 27 september 1985 (pp.13-19). Leiden: Uitgeverij Zorn. Oostvogel, F.J.G. (1989). De historische ontwikkeling van het verpleeghuis. In Trommel, J., Ribbe, M.W. & Stoop, J.A. (Eds.). Capita selecta van de verpleeghuisgeneeskunde (pp.3-20). Utrecht: Bohn, Scheltema & Holkema. Overheid wil thuiszorg voor stervende patiënt. (1985, June 15). Het Vrije Volk, p.13. Overy, C. & Tansey, E.M. (Eds.). (2013). Palliative medicine in the UK c.1970-2010. London: Queen Mary, University of London. Palliactief (2011a). Financiering & organisatie van palliatieve zorg: De pioniersfase voorbij? Bunnik: Palliactief. Palliactief (2011b). Bedrijfsvoering van high care hospices en bijna thuis huizen. Bunnik: Palliactief. Palliatieve zorg blijft groeien. (2005, December 20). Reformatorisch Dagblad, p.3. Parsons, W. (1995). Public policy: An introduction to the theory and practice of policy analysis. Cheltenham: Edward Elgar. Patel, K.K. (2003). Transatlantische Perspektiven transnationaler Geschichte. Geschichte und Gesellschaft, 29(4), 625-647. Paumen, M. (1988, June 11). Doodgaan op bestelling. NRC Handelsblad, p.2. Pedersen, S. (2002). What is political history now? In Cannadine, D. (Ed.). What is history now? (pp.36-56). New York: Palgrave Macmillan. Peeters, J. & Sutorius, E. (2011). Uit vrije wil: Waardig sterven op hoge leeftijd. Amsterdam: Boom. Pennings, P. (1991). Verzuiling en ontzuiling. De lokale verschillen: Opbouw, instandhouding en neergang van plaatselijke zuilen in verschillende delen van Nederland na 1880. Kampen: Uitgeversmaatschappij J.H. Kok. Pernau, M. (2011). Transnationale Geschichte. Göttingen: Vandenhoeck & Ruprecht. Petzhold, H.G., Van Hellenberg Hubar, R.B. & Van Hellenberg Hubar, E.J.M. (1990). Hospice terminale thuiszorg: Een zorg op maat. Zeist: Landelijke Stichting Elckerlijc. Pickstone, J. (2007). Contested cumulations: Configurations of cancer treatments through the twentieth century. Bulletin for the History of Medicine, 81(1), 164- 196. Pickstone, J. (2012). Radicalism, neoliberalism and biographical medicine: Constructions of English patients and patient histories around 1980 and now. In Timmermann, C. & Toon, E. (Eds.). Cancer patients, cancer pathways:

263

Historical and sociological perspectives (pp.230-255). Basingstoke: Palgrave Macmillan. Pierson, P. (2004). Politics in time: History, institutions, and social analysis. Princeton: Princeton University Press. Pierson, P. (2005). The study of policy development. Journal of Policy History, 17(1), 34-51. Platform Palliatieve Zorg (2009a). Aanpak en activiteiten van het Platform. In Platform Palliatieve Zorg (Ed.). Nieuwsbrief palliatieve zorg: Nummer 01 - Maart 2009 (pp.2-3). Den Haag: Min VWS. Platform Palliatieve Zorg (2009b). Kijk over de schutting. In Platform Palliatieve Zorg (Ed.). Nieuwsbrief palliatieve zorg: Nummer 03 - Oktober 2009 (pp.2-3). Den Haag: Min VWS. Platform Palliatieve Zorg (2011). Platform Palliatieve Zorg 2008-2010 is ten einde. In Platform Palliatieve Zorg (Ed.). Nieuwsbrief palliatieve zorg: Nummer 07 - Januari 2011 (pp.2-3). Den Haag: Min VWS. Pleidooi voor meer regie in palliatieve zorg. (2011, May 25). Reformatorisch Dagblad, p.3. Poll, M. (1997, February 15). Palliatieve zorg als alternatief voor euthanasie: De hemel begint in het sterfhuis. NRC Handelsblad, p.7. Pollitt, C. (1986). Performance measurement in the public services: Some political implications. Parliamentary Affairs, 39(3), 315-329. Pollitt, C. (2008). Time, policy, management: Governing with the past. Oxford: Oxford University Press. Pollitt, C., Harrison, S., Dowsell, G., Jerak-Zuiderent, S. & Bal, R. (2010). Performance regimes in health care: Institutions, critical junctures and the logic of escalation in England and the Netherlands. Evaluation, 16(1), 13-29. Pollitt, C. (2011). Not odious but onerous: Comparative public administration. Public Administration, 89(1), 114-127. Pols, M. (2013, March 5). Stichting wil nog dit jaar starten met bouw Hospice Wijchen. De Gelderlander. Poortvliet, E.P., Vennekens, A. & Heine, J.A.H. (2011). Evaluatie Platform Palliatieve Zorg: Eindrapport. Zoetermeer: Research voor Beleid. Porter, K.R.D. (1973). Paper by dr. K.R.D. Porter. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.75-77). London: Her Majesty's Stationery Office. Powell, M. (2014). Health and citizenship: Political cultures of health in modern Europe. In Huisman, F. & Oosterhuis, H. (Eds.). Neo-republican citizenship and the British National Health Service since 1979 (pp.177-190). London: Pickering & Chatto. Praill, D. & Shaw, C. (2001). Caring about funding. NGO Finance, 11(1), 28-29. Projectgroep Integratie Hospicezorg (1999a). Tussenrapportage Projectgroep Integratie Hospicezorg: Discussienota. s.l.: Projectgroep Integratie Hospicezorg. Projectgroep Integratie Hospicezorg (1999b). Tussenrapportage Projectgroep Integratie Hospicezorg: Inventarisatiestudie. s.l.: Projectgroep Integratie Hospicezorg. Projectgroep Integratie Hospicezorg (1999c). Tussenrapportage Projectgroep Integratie Hospicezorg: Rapportage Bezoeken. s.l.: Projectgroep Integratie Hospicezorg. Projectgroep Integratie Hospicezorg (2000a). Tussenrapportage Projectgroep Integratie Hospicezorg: Instellingsbesluit; Uitvoering eerste deel opdracht. s.l.: Projectgroep Integratie Hospicezorg. Projectgroep Integratie Hospicezorg (2000b). Tussenrapportage: Plan van aanpak voor uitvoering tweede deel opdracht.

264

Projectgroep Integratie Hospicezorg (2000c). Toetsing en verdere ontwikkeling van het Netwerkmodel: Plan van aanpak. s.l.: Projectgroep Integratie Hospicezorg. Projectgroep Integratie Hospicezorg (2000d). Tussenrapportage Projectgroep Integratie Hospicezorg: Conceptnota; reacties. s.l.: Projectgroep Integratie Hospicezorg. Projectgroep Integratie Hospicezorg (2001). Verbetering van de zorg voor mensen in de terminale fase en hun naasten: Eindrapport. Voorburg: Projectgroep Integratie Hospicezorg. Protestantse stichting wil 'bijna-thuis-huizen'. (1990, April 14). Nederlands Dagblad, p.2. Provinciale Kruisvereniging Noord-Holland, Kruisvereniging Haarlem, Vereniging Maatschappelijke Gezondheidszorg van de Kruisverenigingen in de IJmond, Stichting Samenwerkende Kruisverenigingen Zuid-West Kennemerland & Instituut Sociale Geneeskunde Universiteit Amsterdam (1986). Projekt nachtverpleging bij terminale patiënten: Evaluatierapport. Haarlem: Provinciale Kruisvereniging Noord-Holland. Provinciale Kruisvereniging Noord-Holland, Nationale Kruisvereniging Bunnik & Instituut Sociale Geneeskunde Universiteit Amsterdam (1987). Nachtverpleging door het kruiswerk bij terminale patiënten. Bunnik: Nationale Kruisvereniging. Raadschelders, J.C.N. (1998). Handbook of administrative history. New Brunswick: Transaction Publishers. Radbruch, L., Leget, C., Bahr, R., Müller-Busch, C., Ellershaw, J., De Conno, F. & Van den Berghe, P. (2016). Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care. Palliative Medicine, 30(2), 104-116. Ramakers, R. & Bruning, H. (1988). Thuiszorgprojecten in Rotterdam, Spaarneland en Zoetermeer: Eerste interim-rapportage in het kader van de proeffase van het onderzoek 'Experimenten thuisverpleging'. Nijmegen: Instituut voor Toegepaste Sociale Wetenschappen. Ramos Pinto, P. & Taithe, B. (Eds.). (2015). The impact of history? Histories at the beginning of the twenty-first century. London: Routledge. Reële keus voor sterven in eigen huis. (1982, December 22). NRC Handelsblad, p.3. Reenders, K. (1983). Is integrale pijnbehandeling bij mensen met kanker mogelijk? Medisch Contact, 38(48), 1518-1519. Reerink, D. (1988, February 20). Nederlandse Hospice Beweging heeft aandacht voor terminaal zieken. De Telegraaf, p.TA5. Regeling voor terminale zorg. (1997, December 5). Trouw, p.3. Reith, N. (1999). Rob van Hellenberg Hubar, voorzitter Stichting Elckerlijck: ''Palliatieve zorg is niet te institutionaliseren''. Pallium: Tijdschrift over Palliatieve Zorg, 1(4), 18-19. Reynolds, L.A. & Tansey, E.M. (Eds.). (2004). Innovation in pain management: The transcript of a witness seminar held by the Wellcome Trust Centre or the History of Medicine at UCL, London, on 12 December 2002. London: Wellcome Trust Centre for the History of Medicine at UCL. Ribbe, M.W. & Van Mens, J.T. (1986). Enkele kenmerken van verpleeghuispatiënten. Nederlands Tijdschrift voor Geneeskunde, 130(14), 624-646. Ribbe, M.W., Van Mens, J.T. & Frijters, D.H.M. (1989). Verpleeghuispatiënten: Een kwantitatieve beschrijving. In Trommel, J., Ribbe, M.W. & Stoop, J.A. (Eds.). Capita selecta van de verpleeghuisgeneeskunde (pp.61-84). Utrecht: Bohn, Scheltema & Holkema. Rigter, H.G.M. (1987). De Gezondheidsraad. In Janssen, R., Kocken, P. & Van der Made, J. (Eds.). Externe adviesorganen in de gezondheidszorg: Het grijze circuit belicht (pp.139-148). Lochem: De Tijdstroom.

265

Rigter, R.B.M. (1992). Met raad en daad: De geschiedenis van de Gezondheidsraad 1902-1985. Rotterdam: Erasmus Universiteit. Rivett, G. (1997). From cradle to grave: Fifty years of the NHS. London: King's Fund. Rodgers, D.T. (1998). Atlantic crossings: Social politics in a progressive age. Cambridge: The Belknap Press of Harvard University Press. Rogers, R. & Walters, R. (2006). How Parliament works (6 ed.). Harlow: Pearson. Rose, R. (Ed.). (1976). The dynamics of public policy: A comparative analysis. London: SAGE Publications. Rose, R. & Davies, P. (1994). Inheritance in public policy: Change without choice in Britain. New Haven: Yale University Press. Rose, R. (2005). Learning from comparative public policy: A practical guide. London: Routledge. Rosenberg, C.E. (2006). Anticipated consequences: Historians, history, and health policy. In Stevens, R.A., Rosenberg, C.E. & Burns, L.R. (Eds.). History & health policy in the United States: Putting the past back in (pp.13-31). New Brunswick: Rutgers University Press. Rossi, P.N. (2009). Fighting cancer with more than medicine: A history of Macmillan Cancer Support. Brimscombe Port Stroud: The History Press. Rothman, D.J. & Wheeler, S. (Eds.). (1981). Social history and social policy. New York: Academic Press. Roy, D.J. & Rapin, C.-H. (1994). Regarding euthanasia. European Journal of Palliative Care, 41(1), 1-4. Royal College of General Practitioners (1980). National terminal care policy: Report of the Working Group on Terminal Care. Journal of the Royal College of General Practitioners, 30(8), 466-471. Royal College of General Practitioners & Cancer Relief Macmillan Fund (1995a). General practice palliative care facilitator project 1992-1994: Report of an evaluation (Executive summary). London: Royal College of General Practitioners. Royal College of General Practitioners & Cancer Relief Macmillan Fund (1995b). General practice palliative care facilitator project 1992-1994: Report of an evaluation. London: Royal College of General Practitioners. Royal College of Physicians of London (1972). Report of the College Committee on Geriatric Medicine. London: Royal College of Physicians of London. Ruijten, J. & De Gouw, M. (2002). Laat niemand in eenzaamheid sterven: Handleiding voor het opzetten van een hospicehuis en voor het werk van de vrijwilligers. Haarlem: De Toorts. Rutten, F. & Van Doorslaer, E. (2001). Internationale vergelijking van gezondheidszorg. In Lapré, R., Rutten, F. & Schut, E. (Eds.). Algemene economie van de gezondheidszorg (pp.295-321). Maarssen: Elsevier Gezondheidszorg. Sabatier, P.A. (Ed.). (1999). Theories of the policy process. Boulder: Westview Press. Sachsenmaier, D. (2011). Global perspectives on global history: Theories and approaches in a connected world. Cambridge: Cambridge University Press. Saltman, R.B. & Durán, A. (2011). Conclusions and remaining issues. In Saltman, R.B., Durán, A. & Dubois, H.F.W. (Eds.). Governing public hospitals: Reform strategies and the movement towards institutional autonomy (pp.75-86). London: European Observatory on Health Systems and Policies. Samenwerkingsverband Terminale Thuiszorg zoekt vrijwilligers. (1989, November 1). Het Vrije Volk, p.4. Samplonius, L.B., Van Dijk, J.P. & Post, D. (1998). Verlichtende zorg voor terminale patiënten: Hospice-zorg in Nederland. Medisch Contact, 53(49), 1574-1576. Saunders, C. (1959). Care of the dying: The problem of euthanasia. Nursing Times,

266

72(27), 960-961. Saunders, C. (1960). The management of patients in the terminal stage. In Raven, R. (Ed.). Cancer (pp.403-417). London: Butterworth and Company. Saunders, C. (1965). The last stages of life. The American Journal of Nursing, 65(3), 70-75. Saunders, C. (1977). Dying they live: St Christopher's Hospice. In Feifel, H. (Ed.). New meanings of death (pp.153-179). New York: McGraw-Hill Book Company. Saunders, C., Summers, D.H. & Teller, N. (Eds.). (1981). Hospice: The living idea. London: Edward Arnold. Saunders, C. (1982). History and philosophy of the hospice movement. In Hill, F. (Ed.). Proceedings from the first National Conference on Hospice Finance and Administration (London - April 1981) (pp.4-6). Saunders, C. & Baines, M. (1983). Living with dying: The management of terminal disease. Oxford: Oxford University Press. Saunders, C. (1988a). Letter to all medical directors. In Clark, D. (Ed.). Cicely Saunders: Founder of the hospice movement selected letters 1959-1999 (pp.305-306). Oxford: Oxford University Press. Saunders, C. (1988b). Letter to dr. Herbert S. Cohen. In Clark, D. (Ed.). Cicely Saunders: Founder of the hospice movement selected letters 1959-1999 (pp.307-308). Oxford: Oxford University Press. Saunders, C. (1988c). The evolution of the hospices. In Mann, R.D. (Ed.). The history of the management of pain: From early principles to present practice (pp.167- 178). New York: The Parthenon Publishing Group. Saunders, C. (1990). Requests for euthanasia. In Saunders, C. (Ed.). Hospice and palliative care: An interdisciplinary approach (pp.102-108). London: Edward Arnold. Saunders, C. (1992a). Letter. American Journal of Hospice and Palliative Care, 9(14), 2. Saunders, C. (1992b). Voluntary euthanasia. Palliative Medicine, 6(1), 1-5. Saunders, C. (1994). At the crossroads: Which direction for the hospices? Palliative Medicine, 8(2), 169. Saunders, C. (1996). A personal therapeutic journey. British Medical Journal, 313(7072), 1599-1601. Saunders, C. (1998). Caring for cancer. Journal of the Royal Society of Medicine, 91(8), 439-441. Saunders, C. (2001). Social work and palliative care: The early history. British Journal of Social Work, 31(5), 791-799. Saunders, C. (2002a). Letter to brigadier H.L. Glyn Hughes, 22 July 1959. In Clark, D. (Ed.). Cicely Saunders: Founder of the hospice movement selected letters 1959-1999 (pp.15-16). Oxford: Oxford University Press. Saunders, C. (2002b). Letter to dr. Eric Wilkes, 12 September 1963. In Clark, D. (Ed.). Cicely Saunders: Founder of the hospice movement selected letters 1959-1999 (pp.59-60). Oxford: Oxford University Press. Saunders, C. (2002c). A hospice perspective. In Foley, K. & Hendin, H. (Eds.). The case against assisted suicide: For the right to end-of-life care (pp.281-292). Baltimore: The Johns Hopkins University Press. Saunier, P.-Y. (2013). Transnational history. Basingstoke: Palgrave Macmillan. Schäfer, W., Kroneman, M., Boerma, W., Van den Berg, M., Westert, G., Devillé, W. & Van Ginneken, E. (2010). The Netherlands: Health system review. London: European Observatory on Health Systems and Policies. Schipper, A. (1995, April 8). Er is genoeg hulp bij pijn. Trouw. Schmidt, M. (1992, November 14). Dit is het laatste wat je voor ze kunt doen. Het Parool.

267

Schmidt, M. (1994, January 29). In een hospice is het prettig sterven. Het Parool, p.15. Schnabel, P., Meyboom-de Jong, B., Schudel, W.J., Cleiren, C.P.M., Mevis, P.A.M., Verkerk, M.J., Van der Heide, A., Hesselmann, G. & Stultiëns, L.F. (2016). Voltooid leven: Over hulp bij zelfdoding aan mensen die hun leven voltooid achten. Den Haag: Adviescommissie voltooid leven. Schols, J.M.G.A. & Te Wierik, M.J.M. (1993). Verpleeghuiszorg buiten de muren: Dagbehandeling, consultatie en substitutieprojecten. Nederlands Tijdschrift voor Geneeskunde, 137(52), 2717-2722. Schornagel, J.H. (1992). Medische randvoorwaarden voor thuiszorg. In Kraaipoel, R.J. (Ed.). Thuiszorg voor patiënten met kanker: Studieconferentie over advies Gezondheidsraad (pp.18-21). Rijswijk: Ministerie van Welzijn, Volksgezondheid en Cultuur. Schouten, J. (1968). Een bezoek aan het St. Christopher's Hospice te Londen. Nederlands Tijdschrift voor Geneeskunde, 112(15), 704-706. Schrijvers, A.J.P., Mulder, J.D., Van den Muijsenbergh, M.E.T.C. & Deyns, V.J. (1995). Vrijwilligershulp bij terminale thuiszorg: Een Utrechts organisatiemodel. Medisch Contact, 50(15), 492-494. Schut, F.T. (1995a). Competition in the Dutch health care sector. Rotterdam: Erasmus Universiteit. Schut, F.T. (1995b). Health care reform in the Netherlands: Striking a balance between corporatism, etatism and market mechanism. Journal of Health Politics, Policy and Law, 20(3), 615-652. Schuurmans, J. (1995, April 12). Hoe meer artsen van pijnstilling weten, hoe minder euthanasie. Trouw. Scott, F.G. & Brewer, R.M. (Eds.). (1971). Confrontations of death: A book of readings and a suggested method of instruction. Corvallis: Oregon State University. Secretary of State for Health (2000). The NHS Plan: A plan for investment, a plan for reform. Norwich: HMSO. Sewell, W.H. (1967). Marc Bloch and the logic of comparative history. History and Theory, 6(2), 208-218. Sewell, W.H. (2005). Logics of history: Social theory and social transformation. Chicago: University of Chicago Press. Seymour, J. & Clark, D. (2005). The modern history of morphine use in cancer pain. European Journal of Palliative Care, 12(4), 152-155. Sheard, S. (2010). Quacks and clerks: Historical and contemporary perspectives on the structure and function of the British medical civil service. Social Policy & Administration, 44(2), 193-207. Sinner, L. (1976). Vijf jaar leven met kanker: Een gesprek tot op de grens van leven en dood. Baarn: Bosch & Keuning. Slob, M. & Staman, J. (2012). Beleid en het bewijsbeest: Een verkenning van verwachtingen en praktijken rond evidence based policy. Den Haag: Rathenau Instituut. Slot, H.G.J. & Deelstra, W.F. (1986). Thuis sterven, een vervulbare wens? Een typering van de organisatorische inspanningen in de gezinsverzorging om haar aandeel te leveren in deze vorm van thuiszorg. Utrecht: Centrale Raad voor Gezinsverzorging. Sluis, P. (1989a). De Nederlandse Hospice Beweging. In Vos-Maan, M. (Ed.). Ruimte voor sterven: Weergave van het gelijknamige symposium georganiseerd door Studium Generale, Erasmus Universiteit Rotterdam (pp.37-43). Rotterdam: Bureau Studium Generale. Sluis, P. (1989b). Terminale thuiszorg: De Nederlandse Hospice Beweging. Medisch Contact, 44(6), 185-186.

268

Sluis, P. (1990). Ontwikkelingen van de organisatie in Nederland. Bijblijven: Cumulatief geneeskundig nascholingssysteem, 6(8), 30-35. Sluis, P. (1997). Stichting Nederlandse Hospice Beweging 10 jaar oud. Medisch Contact, 52(5), 171-172. Sluis, P. (2001). Uitgedokterd: Een huisarts over ziek zijn, zorg en zingeving. Deventer: Ankh-Hermes. Sluis, P. (2003). Liever gewoon dood: Een aanloop naar de hospice-beweging. Deventer: Ankh-Hermes. Sluis, P. (2004). Zorg om zorg: Gezondheidszorg met hoofd, hart en ziel. Deventer: Ankh-Hermes. Smith, M. (2009). PostNote 323: Lessons from history. London: Parliamentary Office of Science and Technology. Smith, T. (1984). Problems of hospices. British Medical Journal, 288(6425), 1178- 1179. Smithers, D. (1973). Paper by professor Sir David Smithers. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.35-39). London: Her Majesty's Stationery Office. Smithers, D. (1989). Not a moment to lose: Some reminiscences. Cambridge: The Memoir Club. Smits, M. (2007, December 22). Er is nog leven vóór de dood. Het Financieele Dagblad, p.6. Snow, S.J. (2013). 'I’ve never found doctors to be a difficult bunch’: Doctors, managers and NHS reorganisations in Manchester and Salford, 1948-2007. Medical History, 57(1), 65-86. Sociaal Economische Raad (1980). Advies inkomensafhankelijke bijdrageregeling AWBZ. Den Haag: Sociaal Economische Raad. Spanjer, M. (1985, September 30). Thuisverpleging, revolutie in gezondheidszorg. NRC Handelsblad, p.8. Spits, J. (1995). Hij heeft vooral gepoogd leemten aan te vullen: Een geschiedenis van gemeentelijke gezondheidszorg in de stad Groningen 1919-1994. Groningen: GGD Groningen/ Geschiedeniswinkel RUG. Spreeuwenberg, C. (1988). Terminale zorg: Een serie. Medisch Contact, 43(36), 1043. Spreeuwenberg, C. (1989). Sterven in Nederland. In Vos-Maan, M. (Ed.). Ruimte voor sterven: Weergave van het gelijknamige symposium georganiseerd door Studium Generale, Erasmus Universiteit Rotterdam (pp.9-17). Rotterdam: Bureau Studium Generale. Spreeuwenberg, C. (1990). Stervensbegeleiding. Medisch Contact, 45(11), 343. St. Christopher’s Hospice (1972). Annual report 1971-1972. London: St. Christopher’s Hospice. St. Christopher’s Hospice (1977). Annual report 1976-1977. London: St. Christopher’s Hospice. St. Christopher’s Hospice (1980). Annual report and year book 1979-1980. London: St. Christopher’s Hospice. Stakenas, R. & Soifer, P. (1991). Models and historical data in public policy analysis. In Mock, D.B. (Ed.). History and public policy (pp.55-74). Malabar: Krieger Publishing Company. Staley, D.J. (2007). History and future: Using historical thinking to imagine the future. Lanham: Lexington Books. Standing Medical Advisory Committee (1980). Terminal care: Report of a working group. London: HMSO. Standing Medical Advisory Committee & Standing Nursing and Midwifery Advisory Committee (1993). The principles and provision of palliative care. London:

269

HMSO. Steeds meer mensen willen thuis sterven. (1989, January 19). NRC Handelsblad, p.7. Steeds meer terminale thuiszorg. (2001, January 12). Algemeen Dagblad, p.27. Stegenga, H. (2010, April 30). Concrete plannen voor een hospice in Dronten met vier 'gastenkamers'. De Stentor, p.B02. Sterfhuis komt in de Poppelaan. (2007, October 4). BN De Stem, p.B02. Sterfhuis openen in feestjaar is ons ideaal. (2009, May 6). Noordhollands Dagblad. Sterven. (1971, February 27). De Tijd, p.6. Stervensbegeleiding. (1982, December 22). Nederlands Dagblad, p.5. Stervensbegeleiding kan gesubsidieerd. (1979, August 21). Leeuwarder Courant, p.7. Stervensbegeleiding krijgt subsidie van Ziekenfondsraad. (1979, August 22). De Waarheid, p.3. Stervensbegeleiding: Medisch-ethische plicht? (1970). Medisch Contact, 25(17), 418- 424. Steunenberg, B. (1997). Courts, cabinet and coalition parties: The politics of euthanasia in a parliamentary setting. British Journal of Political Science, 27(4), 551-571. Stevens, J.A.J. (1991). Huisarts, 'hospice', hospitaal: Nieuwe mogelijkheden voor optimale terminale zorg. Medisch Contact, 46(24), 764-766. Stevens, P. (2003). Handleiding Projectgroep Integratie Hospicezorg (PIH): Een netwerk van zorgplekken. Pallium: Tijdschrift over Palliatieve Zorg, 5(1), 19-22. Stevens, P.G.J.J. (2000). Hospicezorg en palliatieve terminale zorg. Nederlands Tijdschrift voor Palliatieve Zorg, 1(3), 70-73. Stevens, R.A., Rosenberg, C.E. & Burns, L.R. (Eds.). (2006). History & health policy in the United States: Putting the past back in. New Brunswick: Rutgers University Press. Stichting Voorbij de Laatste Stad & Integraal Kankercentrum Rotterdam (1985). Symposium omgaan met sterven. Rotterdam: Stichting Voorbij de Laatste Stad & Integraal Kankercentrum Rotterdam. Stijkel, I. (2011, December 30). Hospice: Levenseinde in 'huiselijke' sfeer. Dagblad Flevoland. Stjernswärd, J., Colleau, S.M. & Ventafridda, V. (1996). The World Health Organization Cancer Pain and Palliative Care Program: Past, present, and future. Journal of Pain and Symptom Management, 12(2), 65-72. Stoffels, A. (1991, June 1). Christenen in Amsterdam bewijzen barmhartigheid in 'bijna-thuis-huis'. Nederlands Dagblad, p.15. Stolberg, M. (2007). 'Cura Palliativa': Begriff und Diskussion der palliativen Krankheitsbehandlung in der vormodernen Medizin (ca. 1500-1850). Medizin Historisches Journal, 42(1), 7-29. Stolberg, M. (2011). Die Geschichte der Palliativmedizin: Medizinische Sterbebegleitung von 1500 bis heute. Frankfurt am Main: Mabuse-Verlag. Stone, D. (2012). Transfer and translation of policy. Policy Studies, 33(6), 483-499. Strange, J.-M. (2009). Historical approaches to dying. In Kellehear, A. (Ed.). The study of dying: From autonomy to transformation (pp.123-146). Cambridge: Cambridge University Press. Strange, J.-M. (2011). Death. In Jackson, M. (Ed.). The Oxford handbook of the history of medicine (pp.117-132). Oxford: Oxford University Press. Strupp, C. (2011). Niederlande: Entwicklungen und Tendenzen der zeithistorischen Forschung, Version: 1.0. Docupedia-Zeitgeschichte (http://docupedia.de/zg/), 22.3.2011. Subsidie van vier miljoen voor stervensbegeleiding. (1979, August 21). Nieuwsblad van het Noorden, p.3. Surtees, S.J. (1995). St Wilfrid's: The story of the Eastbourne and District Hospice.

270

Eastbourne: St Wilfrid's Hospice. Swart, S. (2008). Pallilustrum. Pallium: Tijdschrift over Palliatieve Zorg, 10(1), 2. Syme, A. & Bruce, A. (2009). Hospice and palliative care: What unites us, what divides us? Journal of Hospice and Palliative Nursing 11(1), 19-24. Szabo, J. (2009). Incurable and intolerable: Chronic disease and slow death in nineteenth-century France. New Brunswick: Rutgers University Press. Talbot, C. & Talbot, C. (2014). Sir Humphrey and the professors: What does Whitehall want from academics? A survey of senior civil servants’ views on the accessibility and utility of academic research and expertise. Manchester: Policy@Manchester. Talbot, C. & Talbot, C. (2015). Bridging the academic-policy-making gap: Practice and policy issues. Public Money & Management, 35(3), 187-194. Taylor, H. (1983). The hospice movement in Britain: Its role and its future. London: Centre for Policy on Ageing. Te Velde, H. (2005). Political transfer: An introduction. European Review of History: Revue Europeenne d'Histoire, 12(2), 205-221. Ten Haaft, G. (1996a, March 14). We moeten mensen helpen te leven tot ze doodgaan, zo simpel is het. Trouw. Ten Haaft, G. (1996b, April 16). Minister Borst: Geen geld voor Nederlandse hospices. Trouw. Ten Have, H. & Janssens, R. (Eds.). (2001). Palliative care in Europe. Amsterdam: IOS Press. Terlouw, J. (1983). Naar zeventien zetels en terug: Politiek dagboek 9 Maart 1981 - 5 November 1982. Veen: Utrecht. Terminale begeleiding (I) (1977). Medisch Contact, 32(27), 859. Terminale patiënt drukt te zwaar op de begroting. (1999, April 20). Algemeen Dagblad, p.3. Terminale thuiszorg bij overheidsbeleid prioriteit. (1985, June 15). Nederlands Dagblad, p.3. Teunissen, S. & Witteveen, E. (2005). Organisatie van palliatieve zorg. In Spreeuwenberg, D., Bakker, D.J., Dillmann, R.J.M., Blijham, G.H., Teunissen, S. & Zylicz, Z. (Eds.). Handboek palliatieve zorg (2 ed., pp.341-375). Maarssen: Elsevier Gezondheidszorg. Teunissen, S., Vissers, K., Van Tol, C., Fiouw, J., Grevenstuk, J., Van Rijswijk, E., Rhebergen, A., Hoefsmit, N. & Roelands, Y. (2011). Witboek palliatieve zorg 2011-2020. The, A.-M. (2009). Verlossers naast God: Dokters en euthanasie in Nederland. Amsterdam: Uitgeverij Thoeris. The National Association of Health Authorities in England and Wales (1986). Summary report of conference on care for the dying. London: NAHA. Thuis sterven moet beter geregeld. (1985, March 26). Nieuwsblad van het Noorden, p.5. Thuis sterven: Begeleiding als experiment in drie wijken. (1986, October 1). Het Vrije Volk, p.15. Thuiszorg voor ten dode opgeschreven mensen 'haalbaar'. (1986, October 23). NRC Handelsblad, p.4. Tilly, C. (1984). Big structures, large processes, huge comparisons. New York: Russel Sage Foundation. Tilly, C. (2006). Why and how history matters. In Goodin, R.E. & Tilly, C. (Eds.). The Oxford handbook of contextual political analysis (pp.417-437). Oxford: Oxford University Press. Toetsingscommissie COPZ (2001). Structuurverandering palliatief terminale zorg in Nederland. Utrecht: Toetsingscommissie COPZ.

271

Toonen, T.A.J. (1987). The Netherlands: A decentralised unitary state in a welfare society. West European Politics, 10(4), 108-129. Trappenburg, M. (2006). Societal neurosis in health care. In Duyvendak, J.W., Knijn, T. & Kremer, M. (Eds.). Policy, people, and the new professional: De- professionalisation and re-professionalisation in care and welfare (pp.48-63). Amsterdam: Amsterdam University Press. Travis, S. & Hunt, P. (2001). Supportive and palliative care networks: A new model for integrated care. International Journal of Palliative Nursing, 7(10), 501-504. Tuohy, C.H. (2012). Shall we dance? The intricate project of comparison in the study of health policy. Health Economics, Policy and Law, 7(1), 21-23. Turchetti, S., Herran, N. & Boudia, S. (2012). Introduction: Have we ever been 'transnational'? Towards a History of Science across and beyond borders. British Journal for the History of Science, 45(3), 319-336. Twee miljoen extra voor hospices. (2007, April 14). Reformatorisch Dagblad, p.3. Twigger, R. (1999). Angry white pyjamas. London: Phoenix. Twycross, R.G. (1980). Hospice care: Redressing the balance in medicine. Journal of the Royal Society of Medicine, 73(7), 475-481. Twycross, R.G. (1996). Euthanasia: Going Dutch? Journal of the Royal Society of Medicine, 89(2), 61-63. Van Bottenburg, M., De Vries, G. & Mooij, A. (1999). Zorg tussen staat en markt: De maatschappelijke betekenis van de Ziekenfondsraad 1949-1999. Zutphen: Walburg Pers. Van Dam, A.J.M. (1987). De Ziekenhuiscommissie/ Het College voor Ziekenhuisvoorzieningen en de invloed van de overheid op de bouw in de gezondheidszorg. In Janssen, R., Kocken, P. & Van der Made, J. (Eds.). Externe adviesorganen in de gezondheidszorg: Het grijze circuit belicht (pp.107-118). Lochem: De Tijdstroom. Van Dam, P. (2014). Voorbij verzuiling en ontzuiling als kader in de religiegeschiedenis. In Van Dam, P., Kennedy, J. & Wielenga, F. (Eds.). Achter de zuilen: Op zoek naar religie in naoorlogs Nederland (pp.31-56). Amsterdam: Amsterdam University Press. Van de Kimmenade-Beekmans, A. (1991). Van pesthuis tot wijkgebouw: De ontwikkeling van de gezondheidszorg in Gemert en het Wit-Gele Kruis. Gemert: Heemkundekring 'De Kommanderij Gemert'. Van de Walle, A.R. & Van Hellenberg Hubar, E.J.M. (1989). Ons aller wens: Hospice terminale thuiszorg. Zeist: Landelijke Stichting Elckerlijc. Van den Berg, J.H. (1969). Medische macht en medische ethiek. Nijkerk: Uitgeverij C.F. Callenbach. Van den Berg, M.J., Kringos, D.S., Marks, L.K. & Klazinga, N.S. (2014). The Dutch health care performance report: Seven years of health care performance assessment in the Netherlands. Health Research Policy and Systems, 12(1), 1- 7. Van den Bos, G.A.M., Frijling, B.W., Koster-Dreese, Y., Schnabel, P. & Spreeuwenberg, C. (Eds.). (1999). Chronisch-ziekenbeleid in de jaren negentig. Utrecht: Uitgeverij SWP. Van den Heuvel, W. (1997). Policy towards the elderly: Twenty-five years of Dutch experience. Journal of Aging Studies, 11(3), 251-258. Van der Bie, R.J. & Smits, J.P. (2001). Tweehonderd jaar statistiek in tijdreeksen. Amsterdam: Uitgeverij Stichting Beheer IISG. Van der Bles, W. (2007, December 4). Slikken tot de dood volgt. Trouw, p.5. Van der Eerden, M., Hasselaar, J., Ebenau, A. & Groot, M. (2016). Continuity of cancer care between a regional network and a multidisciplinary oncology unit: An example in the Netherlands. In Hasselaar, J. & Payne, S. (Eds.). Integrated

272

palliative care (pp.37-41). Nijmegen: Radboud University Medical Center. Van der Heide, A., Brinkman-Stoppelenburg, A., Van Delden, H. & Onwuteaka- Philipsen, B. (2012). Sterfgevallenonderzoek 2010: Euthanasie en andere medische beslissingen rond het levenseinde. Den Haag: ZonMw. Van der Hoeven, H.C. (1983). Om de macht bij het fonds: De ziekenfondsen te midden van de sociale veranderingen in de jaren 1900-1982. Den Haag: AZIVO Algemeen Ziekenfonds De Volharding. Van der Hoeven, H.C. & Van der Hoeven, W.W. (1993). Om welzijn of winst: 100 jaar ziekenfondsen en sociale zekerheid. Deventer: Kluwer. Van der Maas, P.J., Van Delden, J.J.M. & Pijnenborg, L. (1991). Medische beslissingen rond het levenseinde: Het onderzoek voor de Commissie onderzoek medische praktijk inzake euthanasie. 's-Gravenhage: Sdu Uitgeverij. Van der Meer, F., Raadschelders, J. & Kerkhoff, T. (2011). Van nachtwakersstaat naar waarborgstaat: Proliferatie en vervlechting van het Nederlandse openbaar bestuur in de lange twintigste eeuw (1880-2005). In Wagenaar, P., Kerkhoff, T. & Rutgers, M. (Eds.). Duizend jaar openbaar bestuur in Nederland (pp.221- 290). Bussum: Coutinho. Van der Meij-de Leur, A.P.M. (1989). Van olie en wijn: Geschiedenis van verpleegkunde, geneeskunde en sociale zorg. Utrecht: Bohn, Scheltema & Holkema. Van der Poel, L.C.J. (1987). Het Centraal Orgaan Tarieven Gezondheidszorg. In Janssen, R., Kocken, P. & Van der Made, J. (Eds.). Externe adviesorganen in de gezondheidszorg: Het grijze circuit belicht (pp.119-130). Lochem: De Tijdstroom. Van der Reijden, J.P. (1997). Terugblik op de periode 1982-1986. In Gerritsen, J.C. & Van Linschoten, C.P. (Eds.). Gezondheidszorgbeleid: Evaluatie en toekomstperspectief (pp.33-37). Assen: Van Gorcum. Van der Veen, E. (1992). Thuis sterven, de zorg van vrijwilligers: Landelijke inventarisatie van vrijwilligersorganisaties in de terminale thuiszorg. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Van der Veen, E. (1994). Op het spoor: Er zijn. Zorgen voor stervenden en hun naasten met hulp van vrijwilligers. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Van der Velden, H. (1993). Financiële toegankelijkheid tot gezondheidszorg in Nederland, 1850-1941. Amsterdam: Stichting beheer IISG. Van Dijk, F. (1993). Verzekerd van zorg: Een onderzoek naar instituties en weten regelgeving op het terrein van de bekostiging en verzekering als onderdeel van het stelsel van structuur en financiering van de gezondheidszorg, 1940-1990. 's-Gravenhage: Rijksarchiefdienst. Van Doorn, J.A.A. (1998). Een verdeeld Nederland in historisch perspectief. In Bovens, M., Pellikaan, H. & Trappenburg, M. (Eds.). Nieuwe tegenstellingen in de Nederlandse politiek (pp.15-33). Amsterdam: Boom. Van Gennip-Horsten, T. & Schnabel, P. (1980). Thuis sterven: Een onvervulbare laatste wens? Een onderzoek naar de zorg voor stervenden in Rotterdam. Utrecht: Nationaal Centrum voor Geestelijke Volksgezondheid. Van Ginneken, E., Schäfer, W. & Kroneman, M. (2010). Managed competition in the Netherlands: An example for others? Eurohealth, 16(4), 23-26. Van Hellenberg Hubar, R.B. (1989). Hospices van Plymouth tot Leeds. Zeist: Landelijke Stichting Elckerlijc. Van Lieshout, M. (2004, December 18). Vrijwilligers ijveren met succes voor bijna thuis huis in Nieuwegein. De Volkskrant, p.U11. Van Londen, J. (1989). Terminale thuiszorg: Over differentiatie en diversificatie in de gezondheidszorg. Medisch Contact, 44(6), 189-190.

273

Van Overeem, E. (1976, January 7). Londens St. Christopher's Hospice: Gasthuis voor stervenden. NRC Handelsblad, p.2. Van Reuler, A.A.H.E. (2006). The organisation of palliative care: Is there anything the Netherlands can learn from Austria? Enschede: University of Twente. Van Reuler, A.A.H.E. (2007). De bekostiging van de palliatieve zorg in Nederland: Een economische analyse. Enschede: Universiteit Twente. Van Reuler, A.A.H.E. (2008). On specialist cancer hospitals, cancer policies and health care systems: A comparative history of the developments in England and the Netherlands in the period 1980-2007. Manchester: University of Manchester. Van Rijn: Thuis sterven mogelijk. (2016, January 12). Nederlands Dagblad. Van Rijssel, N. (1988). Brief: Aanvullende thuiszorg. Medisch Contact, 43(3), 69. Van Rooij, E., Droyan Kodner, L., Rijsemus, T. & Schrijvers, G. (Eds.). (2001). Health and health care in the Netherlands: A critical self-assessment of Dutch experts in medical and health sciences. Maarssen: Elsevier Gezondheidszorg. Van Soest, A. (2015, August 26). Plaats van overlijden verschilt sterk per land. Nederlands Dagblad. Van Staa, A.L., Van der Zouwe, N. & Visser, A.P. (1999). Pionieren met palliatieve zorg: Evaluatie van de palliatieve zorg unit Dr Daniel den Hoed Kliniek in Rotterdam. Tijdschrift voor Gezondheidswetenschappen, 77(8), 472-478. Van Swaay, A. (1994a). Op het spoor: Samenwerking tussen vrijwilligers en beroepskrachten. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Van Swaay, A. (1994b). Op het spoor: Aanbod en kwaliteit. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Van Swaay, A. (1994c). Op het spoor: Coördinatie. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Van Swaay, A. & De Boer, N. (1994). Op het spoor: Een eerder hulpaanbod. Utrecht: Nederlands Instituut voor Zorg en Welzijn. Van Tol-Verhagen, C., Zuurmond, W.W.A. & Steijns, O. (1997). Kuria: Vier jaar palliatieve zorg in Amsterdam. Medisch Contact, 52(5), 157-158. Van Weerlee, D. (1976, April 6). Emancipatie van de hulp bij sterven. NRC Handelsblad, p.7. Veenhof, J.W. (1994, December 31). Hospice-afdelingen zijn de euthanasievraag vóór. Nederlands Dagblad, p.31. Verhoeven, A. (1983, August 20). In een ziekenhuis proberen ze je altijd weer op te lappen: Besluithuis, toevluchtsoord voor een al dan niet zelfgekozen dood. Reformatorisch Dagblad, p.11. Verpleeghuiszorg te complex. (2016, July 7). De Telegraaf, p.9. Vertel zieke waarheid. (1974, November 16). Het Vrije Volk, p.7. Verzekering vergoedt tot maximaal zestig dagen hulp aan huis. (1989, December 12). NRC Handelsblad, p.2. Vinovskis, M.A. (1999). History and educational policymaking. New Haven: Yale University Press. Visser, J. & Hemerijck, A. (1997). 'A Dutch miracle': Job growth, welfare reform and corporatism in the Netherlands. Amsterdam: Amsterdam University Press. Vitillo, R. & Puchalski, C. (2014). World Health Organization authorities promote greater attention and action on palliative care. Journal of Palliative Medicine, 17(9), 988-989. Vonk, R. (2012). Een taak voor de staat? De Duitse bezetting en de invoering van de verplichte Ziekenfondsverzekering in Nederland, 1939-1941. BMGN - Low Countries Historical Review, 127(3), 3-28. Vooral ethische bezwaren: Ziekenfondsraad wijst subsidie onderzoek stervensbegeleiding af. (1975, November 28). Leeuwarder Courant. Voorbede bij start Kuria-huis voor patiënten in stervensfase. (1991, December 3).

274

Nederlands Dagblad, p.2. Voorbereidingen 'bijna-thuis-huis' in Amsterdam zijn bijna afgerond. (1991, November 8). Nederlands Dagblad, p.2. Vraag naar hulp voor stervenden groeit onstuimig. (1998, November 21). De Volkskrant. Vraag naar vrijwilligers voor terminale patiënten groeit sterk. (1995, November 10). NRC Handelsblad, p.3. Wagenaar, P., Kerkhoff, T. & Rutgers, M. (2011). Duizend jaar openbaar bestuur in Nederland. Bussum: Coutinho. Wallenburg, I., Helderman, J.-K., De Bont, A., Scheele, F. & Meurs, P. (2012). Negotiating authority: A comparative study of reform in medical training regimes. Journal of Health Politics, Policy and Law, 37(3), 439-467. Webster, C. (1988). The health services since the War (Volume I). Problems of health care: The National Health Service before 1957. London: HMSO. Webster, C. (1996). The health services since the War (Volume II). Government and health care: The National Health Service 1958-1979. London: The Stationary Office. Webster, C. (1998). The National Health Service: A political history. Oxford: Oxford University Press. Weg uit ziekenhuis: Hospice Tiel komt in Vrijthof. (2003, August 18). Dagblad Rivierenland, p.RO1. Weiss, C.H. (1977). Research for policy's sake: The enlightenment function of social science research. Policy Analysis, 3(4), 531-545. Weisz, G. (2014). Chronic disease in the twentieth century: A history. Baltimore: Johns Hopkins University Press. Welling, N. & Miltenburg, T. (1989). Oordelen over thuisverpleging. Nijmegen: Instituut voor Toegepaste Sociale wetenschappen. Wendt, C., Frisina, L. & Rothgang, H. (2009). Healthcare system types: A conceptual framework for comparison. Social Policy & Administration, 43(1), 70-90. Werkgroep terminale zorg: Rustig thuis sterven moet mogelijk zijn. (1982, May 11). Leeuwarder Courant, p.9. Werner, M. & Zimmermann, B. (2002). Vergleich, Transfer, Verflechtung: Der Ansatz der Histoire Croisée und die Herausforderung des Transnationalen. Geschichte und Gesellschaft, 28(7), 607-636. Werner, M. & Zimmermann, B. (2006). Beyond comparison: Histoire croisée and the challenge of reflexivity. History and Theory, 45(1), 30-50. Weyers, H. (2004). Euthanasie: Het proces van rechtsverandering. Amsterdam: Amsterdam University Press. Wiegman-van Meppelen Scheppink, E. (2016, July 13). Verpleeghuis is hospice geworden: Pas de zorg daarop aan. Trouw, p.21. Wielenga, F. (2009). Nederland in de twintigste eeuw. Amsterdam: Boom. Wilkes, E. (1973). Paper by professor E. Wilkes. In Department of Health and Social Security (Ed.). Care of the dying: Proceedings of a national symposium held on 29 November 1972 (pp.30-34). London: Her Majesty's Stationery Office. Wilkes, E. (1981). General practitioner in a hospice. British Medical Journal, 282(6276), 1591-1592. Wilkes, E. (1982). The role of the specialist or hospice unit. In Wilkes, E. (Ed.). The dying patient: The medical management of incurable and terminal illness (pp.289-310). Lancaster: M.T.P. Press. Winner, A. (1982). Opening remarks. In Hill, F. (Ed.). Proceedings from the first National Conference on Hospice Finance and Administration (London - April 1981) (pp.3-4). Winslow, M. & Clark, D. (2005). St Joseph's Hospice, Hackney: A century of caring in

275

the East End of London. Lancaster: Observatory Publications. Winslow, M., Seymour, J. & Clark, D. (2005). Pain and palliative care: The emergence of new specialties. Journal of Pain and Symptom Management, 29(1), 2-13. Wisse, A.P. (1986, December 4). Gereformeerde hospices nodig? Nederlands Dagblad, p.2. Wisse, A.P. (1989, March 16). Terminale zorg in goede handen. Nederlands Dagblad, p.2. Witteveen, T.A.M. (1991). Ontwikkelingen in de gezondheidszorg: Consequenties voor terminale zorg. In Van den Akker, P.A.M. (Ed.). Ten einde toe: Terminale patiënten en hun vraag naar zorg (pp.29-42). Tilburg: IVA. Woerdenbag-van Aken, J.M. (2010, February 25). NCRV loopt voorop in liberalisme. Reformatorisch Dagblad. Woitha, K., Garralda, E., Martin-Moreno, J.M., Clark, D. & Centeno, C. (2016). Ranking of palliative care development in the countries of the European Union. Journal of Pain and Symptom Management, 52(3), 370-377. Wolffram, D.J. (2003). Vrij van wat neerdrukt en beklemt: Staat, gemeenschap, sociale politiek, 1870-1918. Amsterdam: Wereldbibliotheek. Wolffram, D.J. (2005). Onze belastingcenten: Een pleidooi voor beleidsgeschiedenis. Groningen: Universiteit Groningen. Woltjer, J.J. (1992). Recent verleden: De geschiedenis van Nederland in de twintigste eeuw. Amsterdam: Uitgeverij Balans. Wolvers, G. (1995, March 11). Een kostbare ervaring. Reformatorisch Dagblad, p.21. Wolvers, G. (2000, June 30). Hospicezorg als hype: Kritiek rond tienjarig bestaan van idealistische Christelijke Hospices Nederland. Reformatorisch Dagblad, p.20. Woodward, C.V. (Ed.). (1997). The comparative approach to American history. New York: Oxford University Press. Woolnough, S., Arkell, E. & Tobias, J. (2010). Improving cancer outcomes: An analysis of the implementation of the UK’s cancer strategies 2006-2010. London: Cancer Research UK. Worcester, A. (1935). The care of the aged, the dying, and the dead. Springfield: Charles C. Thomas. Working Group of the Research Unit of the Royal College of Physicians and the Association for Palliative Medicine (1991). Palliative care: Guidelines for good practice and audit measures. London: Royal College of Physicians of London. Working Group on Acute Services for Cancer (1984). Acute services for cancer: Report of a working group (Chairman: Professor K.D. Bagshawe). London: Standing Medical Advisory Committee. Working Party on Clinical Guidelines in Palliative Care (1995a). Information for purchasers: Background to available specialist palliative care services. London: National Council for Hospice and Specialist Palliative Care Services. Working Party on Clinical Guidelines in Palliative Care (1995b). Outcome measures in palliative care. London: National Council for Hospice and Specialist Palliative Care Services. World Health Assembly (2014). Sixty-seventh World Health Assembly, Ninth plenary meeting, 24 May 2014, A67/VR/9. World Health Organisation (1990). Cancer pain relief and palliative care: Report of a WHO expert committee. Geneva: World Health Organisation. World Health Organization (1996). Cancer pain relief: With a guide to opioid availability. Geneva: World Health Organization. Wormald, P. (1982). Hospice finance: The position of central government and the National Health Service. In Hill, F. (Ed.). Proceedings from the first National Conference on Hospice Finance and Administration (London - April 1981) (pp.46-50).

276

Worswick, J. (2000). A house called Helen: The development of hospice care for children. Oxford: Oxford University Press. Wright, M., Wood, J., Lynch, T. & Clark, D. (2006). Mapping levels of palliative care development: A global view. Lancaster: International Observatory on End of Life Care. Wright, T. (Ed.). (2000). The British political process: An introduction. London: Routledge. Zelizer, J.E. (2000). Clio's lost tribe: Public policy history since 1978. Journal of Policy History, 12(3), 369-394. Zelizer, J.E. (2004). History and political science, together again? Journal of Policy History, 16(2), 126-136. Zelizer, J.E. (2005a). Introduction: New direction in policy history. Journal of Policy History, 17(1), 1-11. Zelizer, J.E. (2005b). Introduction: New directions in policy history. In Zelizer, J.E. (Ed.). New directions in policy history (pp.1-11). Pennsylvania: The Pennsylvania State University Press. Zelizer, J.E. (2012). Governing America: The revival of political history. Princeton: Princeton University Press. Zeylmans van Emmichoven, R. (1998). Kan een betere kwaliteit van terminale zorg de vraag naar euthanasie doen afnemen? In Knijpenga, S. (Ed.). Stilstaan bij sterven: Zes bijdragen rond een verwaarloosd thema in het euthanasiedebat (pp.45-86). Zeist: Christofoor. Ziekenfondsen vergoeden nachthulp terminale patiënt. (1987, January 9). Leeuwarder Courant, p.11. Ziekenfondsraad (1979). Uit de Ziekenfondsraad. Medisch Contact, 34(36), 1157- 1158. Ziekenfondsraad (1984). Advies thuisverpleging. Amstelveen: Ziekenfondsraad. Ziekenfondsraad (1985). Advies terminale thuiszorg. Amstelveen: Ziekenfondsraad. Ziekenfondsraad (1989). Interim-advies inzake invoering intensieve thuiszorg in 1990. Amstelveen: Ziekenfondsraad. Ziekenfondsraad zal stervensbegeleiding mogelijk inpassen. (1982, December 24). Leeuwarder Courant, p.5. Ziekenfondsraad: Extra bedden verpleeghuizen bespoedigen. (1985, March 26). NRC Handelsblad, p.2. Zorg en toewijding. (2016, July 5). Reformatorisch Dagblad, p.2. Zorg thuis breekt familie vaak op. (2007, February 6). De Gelderlander, p.B02. Zorgverzekeraars Nederland (2004). Beleid Zorgkantoor palliatief-terminale zorg: Handreiking voor lokaal overleg met zorgaanbieders. Zeist: Zorgverzekeraars Nederland. Zwolle krijgt eerste hospice. (2014, March 12). Algemeen Dagblad, p.3. Zylicz, Z., Zijlstra, P.M.L. & Van Hellenberg Hubar, E.J.M. (1990). Hospice terminale thuiszorg: Pijnbestrijding, psychosociale zorg, kosten. Zeist: Landelijke Stichting Elckerlijc. Zylicz, Z. (1993). Hospice in Holland: The story behind the blank spot. American Journal of Hospice and Palliative Care, 10(4), 30-34. Zylicz, Z. (1996). The Netherlands: Status of cancer pain and palliative care. Journal of Pain and Symptom Management, 12(2), 136-138. Zylicz, Z., Van den Borne, H.W. & Bolenius, J.F.G.A. (1997). Consultatieve ondersteuning van terminale zorg thuis vanuit Hospice Rozenheuvel: Evaluatie door nabestaanden en huisartsen. Medisch Contact, 52(5), 162-164. Zylicz, Z. (2006). Reactie op overlijden van Cicely Saunders: Een inspirerende opdracht. Pallium: Tijdschrift over Palliatieve Zorg, 8(1), 6.

277

Appendix: Post-war Cabinets

United Kingdom

Years Party Prime minister Minister of Health (until 1968)/ Secretary of State for Health and Social Services (1968-1988)/ Secretary of State for Health (from 1988) 1945-1951 Labour C. Attlee A. Bevan (1945-1951) H. Marquand (1951) 1951-1955 Conservative W. Churchill H. Crookshank (1951-1952) I. Macleod (1952-1955) 1955-1959 Conservative A. Eden (1955-1957) R. Turton (1955-1957) H. Macmillan (1957-1959) D. Vosper (1957) D. Walker-Smith (1957-1959) 1959-1964 Conservative H. Macmillan (1959-1963) D. Walker-Smith (1959-1960) A. Douglas-Home (1963-1964) E. Powell (1960-1963) A. Barber (1960-1964) 1964-1966 Labour H. Wilson K. Robinson 1966-1970 Labour H. Wilson K. Robinson (1966-1968) R. Crossman (1968-1970) 1970-1974 Conservative E. Heath K. Joseph 1974-1979 Labour H. Wilson (1974-1976) B. Castle (1974-1976) J. Callaghan (1976-1979) D. Ennals (1976-1979) 1979-1983 Conservative M. Thatcher P. Jenkin (1979-1981) N. Fowler (1981-1983) 1983-1987 Conservative M. Thatcher N. Fowler 1987-1992 Conservative M. Thatcher (1997-1990) J. Moore (1987-1988) J. Major (1990-1992) K. Clarke (1988-1990) W. Waldegrave (1990-1992) 1992-1997 Conservative J. Major V. Bottomley (1992-1995) S. Dorrell (1995-1997) 1997-2001 Labour T. Blair F. Dobson (1997-1999) A. Milburn (1999-2001) 2001 - 2005 Labour T. Blair A. Milburn (2001-2003) J. Reid (2003-2005) 2005-2010 Labour T. Blair (2005-2007) P. Hewitt (2005-2007) G. Brown (2007-2010) A. Johnson (2007-2009) A. Burnham (2009-2010) 2010-2015 Conservative D. Cameron A. Lansley (2010-2012) & J. Hunt (2012-2015) Liberal Democrats From 2015 Conservative D. Cameron (2015-2016) J. Hunt T. May (from 2016)

278

The Netherlands

Years Parties Prime Minister Minister of Health Secretary of State of (party) (party) Health (party) 1945 -1946 NVB/ W. Schermerhorn L.J.M. Beel - PvdA (NVB/PvdA) (RKSP/KVP) PvdA & RKSP/ W. Drees KVP (SDAP/PvdA) ARP Lib/VVD 1946-1948 KVP L.J.M. Beel P.J. Witteman - PvdA (KVP) (KVP) & W. Drees (PvdA) 1948- 1951 PvdA W. Drees J.H. van Maarseveen A.A. van Rhijn KVP (PvdA) (KVP)/ (PvdA) VVD J.R.H. van Schaik P. Muntendam CHU (KVP) / (PvdA) F.G.C.J.M. Teulings (from 1 April 1950) (KVP) & A.M. Joekes (PvdA) 1951- 1952 PvdA W. Drees A.M. Joekes P. Muntendam KVP (PvdA) (PvdA) (PvdA) VVD CHU 1952- 1956 PvdA W. Drees J.G. Suurhoff P. Muntendam KVP (PvdA) (PvdA) (PvdA) CHU (until 1 October 1953) ARP 1956-1958 PvdA W. Drees J.G. Suurhoff A.A. van Rhijn KVP (PvdA) (PvdA) (PvdA) CHU ARP 1958 - 1959 KVP L.J.M. Beel L.J.M. Beel - ARP (KVP) ( KVP) CHU 1959- 1963 KVP J.E. de Quay Ch.J.M.A. van Rooy B. Roolvink VVD (KVP) (KVP)/ (ARP) CHU V.G.M. Marijnen (KVP)/ ARP G.M.J. Veldkamp (KVP) 1963-1965 KVP V.G.M. Marijnen G.M.J. Veldkamp A.J.H. Bartels ARP (KVP) (KVP) (KVP) CHU VVD 1965-1966 KVP J.M.L.Th. Cals G.M.J. Veldkamp A.J.H. Bartels PvdA (KVP) (KVP) (KVP) ARP & J.F.G.M. de Meijer (KVP) 1966-1967 ARP J. Zijlstra G.M.J. Veldkamp A.J.H. Bartels KVP (ARP) (KVP) (KVP) & J.F.G.M. de Meijer (KVP)

279

1967-1971 KVP P.J.S. de Jong B. Roolvink R. J.H. Kruisinga VVD (KVP) (ARP) (CHU) ARP CHU 1971-1973 ARP B.W. Biesheuvel L.B.J. Stuyt - KVP (ARP) (KVP) VVD CHU DS’70 1973-1977 PvdA J.M. den Uyl I. Vorrink J.P.M. Hendriks KVP (PvdA) (PvdA) (KVP) ARP D66 1977-1981 CDA A.A.M. van Agt L. Ginjaar E. Veder-Smit VVD (CDA) (VVD) (VVD)

1981-1982 CDA A.A.M. van Agt M.H.M.F. Gardeniers- J.J. Lambers- PvdA (CDA) Berendsen Hacquebard D66 (CDA) (D66) 1982-1982 CDA A.A.M. van Agt M.H.M.F. Gardeniers- J.J. Lambers- D66 (CDA) Berendsen Hacquebard (CDA) (D66) 1982- 1986 CDA R.F.M. Lubbers L.C. Brinkman J.P. van der Reijden VVD (CDA) (CDA) (CDA) 1986-1989 CDA R.F.M. Lubbers L.C. Brinkman D.J.D. Dees VVD (CDA) (CDA) (VVD) 1989-1994 CDA R.F.M. Lubbers H. d'Ancona H.J. Simons PvdA (CDA) (PvdA) (PvdA) J.J.M. Ritzen (PvdA) 1994 -1998 PvdA W. Kok E. Borst-Eilers E.G. Terpstra VVD (PvdA) (D66) (VVD) D66 1998- 2002 PvdA W. Kok E. Borst-Eilers A.M. Vliegenthart VVD (PvdA) (D66) (PvdA) D66 2002-2003 CDA J.P. Balkenende E.J. Bomhoff C.I.J.M. Ross-Van Dorp LFP (CDA) (LPF) (CDA) VVD 2003- 2006 CDA J.P. Balkenende J.H. Hoogervorst C.I.J.M. Ross-van Dorp VVD (CDA) (VVD) (CDA) D66 2006-2007 CDA J.P. Balkenende J.H. Hoogervorst C.I.J.M. Ross-van Dorp VVD (CDA) (VVD) (CDA) 2007-2010 CDA J.P. Balkenende A. Klink M. Bussemaker PvdA CDA) (CDA) (PvdA) CU 2010- 2012 VVD M. Rutte E.I. Schippers M. Veldhuijzen van CDA (VVD) (VVD) Zanten-Hyllner (CDA) From 5 November VVD M. Rutte E.I. Schippers M.J. van Rijn 2012 PvdA (VVD) (VVD) (PvdA)

280