Long-Term Care in Europe

Improving Policy and Practice

K. Leichsenring, J. Billings, H. Nies, K. Leichsenring, J. Billings, H. Nies

• Publisher: Palgrave Macmillan
• Year: 2013
• Print ISBN: 9781137032331
• eBook ISBN: 9781137032348
• Topic: Politics & International Relations
• Subtopic: Physiology
• Index: Politics & International Relations

Drawing on research across a wide range of European countries, this book analyzes the key issues at stake in developing long-term care systems for older people in Europe with a focus on progression and improvement for policy and practice.

Part I
Introduction

1

Addressing Long-Term Care as a System – Objectives and Methods of Study

Jenny Billings, Kai Leichsenring and Lis Wagner

A systemic perspective of long-term care: objectives and definitions

One of the major achievements of humanity over the past 50 years has been the steadily rising life expectancy to which health systems all over the world have significantly contributed. Popular media coverage of this advancement however has tended to neglect the benefits of scientific progress that improves human longevity and instead portray catastrophic scenarios such as ‘demographic nightmares’ or the ‘ageing tsunami’. It is undisputed, however, that societies are struggling heavily with the consequences of demographic changes, particularly with respect to health and social care needs of a rising proportion of older people across Europe. The urgent need for policy and practice to respond to this demand has been the main trigger for the authors gathered in this book to elaborate on issues to improve and further develop long-term care (LTC) for older people in a systemic perspective. LTC in general remains a fragmented area; there is a lack of shared definitions within and between European countries, and in many countries it is only just beginning to emerge as an idea at the interfaces between informal and formal care, and between health and social care services. The economic crisis enveloping Europe with its consequent restrictions on public expenditure may also stifle momentum towards improvement and much needed change in LTC services. A number of other key challenges facing policy and practice in this area have been well documented, focusing for example on the lack of clear governance and finance mechanisms, increasing reliance on untrained migrant care workers, poor coordination between services, the burden on informal carers, and the lack of user involvement in care (European Union, 2012; Colombo et al., 2011; Bettio et al., 2006; Costa-i-Font and Courbage, 2011; Lamura et al., 2008; Bewley et al., 2011; Hofmarcher et al., 2007).

However, the aim of this book is to ‘invert’ the negativity inherent within the well-articulated challenges by presenting the most relevant themes and key issues within LTC in Europe and focusing on progression and improvement for policy and practice. These cases build on the state of the art and harness the most current evidence in Europe to describe how and in which direction the construction of LTC systems can be taken forward. The cases include examples of the contextual conditions under which good practice can be transferred between countries and sustained, in order to ensure that those working in this field will benefit from the necessary knowledge and techniques discussed to influence and improve care of older people. In addition, methods of how LTC projects can be evaluated were included, in order to arm practitioners with the ability to provide evidence of effectiveness of their own initiatives.

Underpinning this book is research undertaken within a Seventh Framework EU-funded project ‘Health systems and long-term care for older people in Europe – Modelling the INTERfaces and LINKS between prevention, rehabilitation, quality of services and informal care’ (INTERLINKS). INTERLINKS has assembled a range of themes, sub-themes and 135 key issues into a web-based Framework for LTC that is illustrated by over a hundred examples of validated practice in LTC for older people. This knowledge base will allow those working in this field to assess and develop their own practice using this evidence. By clustering the examples, INTERLINKS has brought into sharp focus key innovations and forward movement in how services for older people are developing and being provided across the EU, and this analysis served as a building block for the cases and issues discussed within this book.

The book is thus gathering the benefits of the advancement in knowledge and potential practice improvements drawn from the following subject matter:

• a debate concerning what is currently understood by the ‘identity’ of LTC and its relationship to progressing policy and practice in the care of older people in the coming years;

• a focus on descriptions and critical analysis of new ways of overcoming the divisions between health and social care services and formal and informal care. This includes improvements in user-centred care, support for informal carers, different types of joint working, care coordination and new approaches to integrated care provision;

• a description and critical review of innovative cases in the construction of LTC systems, introducing fresh topics such as prevention and rehabilitation, volunteering, and advancements in quality development and information technology, but also a review of funding and governance mechanisms;

• a debate regarding critical issues such as migrant care workers in LTC and respective consequences for sending and receiving countries, and ethical as well as practical questions regarding palliative care at the end of life.

Perspectives on LTC must always consider the health and social service aspects in equal parts and in their entirety, and this has often not been addressed sufficiently well, yet interdisciplinary working is the cornerstone of progress in this area. Thus the contributions in this book shed light on how these perspectives merge within the descriptive cases. Central to this book is the visibility of the user and the informal carer, where carers in particular are acknowledged both as co-providers of care and as clients with their own needs for support. This is a necessary step to gain insight into ‘whole systems’ construction with respect to LTC for older people. Geographically, empirical evidence with respect to descriptive examples is drawn from 14 countries representing the different ‘cultures of care’ in Europe, but also literature from a wider international perspective has been included.

The purpose of this introductory chapter therefore is to outline the background of the publication, the aims of INTERLINKS and the justification for addressing LTC focusing on links and interfaces between social/health and formal/informal care divisions. It will also include a section on terminology and the methodological process behind the INTERLINKS Framework for LTC, presenting a rationale for the basis of the individual cases described throughout this book.

Addressing the INTERfaces and LINKS between long-term care and the health system

The rising demand for LTC calls for policy approaches allowing for holistic and inclusive views that integrate the role of different public programmes, sectors of society, and private initiatives. Moreover, there is growing evidence of the discrimination against older people in need of care concerning their access to mainstream health care and to prevention and rehabilitation. The current state in all European countries with fragmented policies and organisations providing varying degrees of support to mainly informal care shows that LTC is still under construction and calls for a systematic developmental approach that needs to be addressed by both health and LTC reforms.

INTERLINKS as an EU-funded project was therefore designed to elaborate on the INTERfaces and LINKS between prevention and rehabilitation, quality, informal care and governance, and to guarantee the confluence of the single elements in a general framework for describing and analysing LTC. The main objectives of this project, accomplished between November 2008 and December 2011 were:

• To develop a concept and methodology to describe and analyse long-term care and its links with the health system. This methodology was to facilitate cross-national comparisons between Member States, enabling them to assess their developmental status and to identify future areas for national development;

• To identify a set of practical tools to describe the evidence base of practice examples;

• To identify acknowledged and established good policy and practice that was transferable across Member States, particularly with respect to assessing and monitoring quality of care, promoting prevention and rehabilitation and supporting informal carers as well as addressing respective governance and financing issues.

Although the individual aspects of health and social care services for people who depend on continuous support are now an area of extensive research in many countries, the concepts, indicators and models for international comparisons and for the identification of good practice across countries are still very much in their infancy. This is particularly the case for existing evidence and model ways of working towards prevention and rehabilitation in LTC, the quality of services (such as organisational development towards more coordinated and integrated working), monitoring governance and financing, and the specific role of informal care provided by family members, friends, neighbours and volunteers. Even at a national level, methodology and measurement are often deficient to address these aspects in a coherent way. In addition, there still a large gap in LTC research and practice between Southern and Northern Europe, particularly that which addresses the formal and informal care interfaces and inherent cultural differences that impact on how care is provided.

The focus of this project was therefore to draw the existing elements together in a ‘state of the art’ European framework for analysing LTC provision. Given the huge variety of health and social care systems in Europe, such a framework had to be constructed by considering pathways of reform policies, economic and other incentives and thresholds for improvement at any stage of a national system’s development.

Figure 1.1 locates the virtual current and potential future position of an integrated LTC system with its links and interfaces to social and health care systems.

This figure is based on the observation that a differentiation between health, social care and long-term care of older people has taken place that leads to bottlenecks and difficulties identified and experienced by users and other stakeholders involved. In Fuchs’ (2006, p. 38) theoretical essay about the health system, he observes that ‘it remains to be elucidated, how “care” fits into the system, whether it should be framed as a subsystem of the health system or as a functional system of its own’. As a result, theories and methods to improve coordination, linkage and networking have been proposed and implemented – but remained fragmented (Johri et al., 2003; Nies, 2004b; 2007; Lüdecke, 2009; Leutz, 1999; Kodner, 2009; Dickinson and Glasby, 2010; Minkman, 2011) or restricted to pilot projects even if these were able to show clear evidence for improvements.

The continuing ‘emergence’ of functional differences when it comes to LTC has been identified repeatedly in theory and practice over the past decade (Leichsenring et al., 2005; Fuchs, 2006; European Centre, 2010). This concerned for instance new approaches to dementia care, fresh funding opportunities, but also paradigmatic changes to improve quality of life and improve the focus on person-centredness, including support for informal carers. INTERLINKS has therefore striven to systematically frame and analyse those elements and key issues that are critical for this functional restructuring process at the systems and the organisational level. Indeed, in terms of Luhmann’s theory of social systems (Luhmann, 1995), we may observe the construction of a (sub-)system, in this case LTC, if we are able to distinguish between the system and its environment. This implies the develop ment of ‘a sense of identity’ as an important precondition (see Chapter 2). The respective indications, symbols and signs for such distinctions that can be observed in the context of LTC form the basis of the purpose of this book, to show how LTC systems are emerging in Europe.

Figure 1.1 Positioning integrated long-term care between health and social care systems

Source: http://interlinks.euro.centre.org

However, compared to economic, political or educational systems, health and social care systems remain theoretically ‘underdetermined’ (Fuchs, 2006). Medical care has developed a wide range of specialisations over several centuries and, in particular, a relatively clearly defined binary code that allows for a distinct construction of reality in terms of ‘ill vs healthy’ (Luhmann 1990, p. 184) or, as Pelikan (2007, p. 296) proposed ‘ill vs not-ill’. With this inclusion or exclusion criterion in mind, the system of medical care has achieved tremendous success in ‘cure’, but it has particular difficulties in dealing with end-of-life care, disabilities or long-term care (Fuchs, 2006). Following the above-mentioned paradigm shifts in LTC, in these cases, ‘patients’ are no longer ‘patients’ but must be defined as ‘clients’, ‘users’, ‘consumers’, ‘citizens’ or just ‘people with LTC needs’. They cannot be ‘cured’ but need care, assistance, social support and rehabilitation to accomplish instrumental activities of daily life even with impairments, so they require functions for which health care organisations are poorly prepared. Moreover, LTC also has to address functions that are crucial to the meaningfulness of life and dignity. These functions might be more familiar to social care, but also in this context, people with LTC needs often do not find an appropriate solution. This may be due to the fact that social care is still frequently connected to rationales of combatting poverty, means-testing, rather than needs-testing, and welfare rather than social inclusion.

The increasing distinction between health, social and long-term care may also be viewed in terms of a transition period during which it becomes necessary to create loosely coupled subsystems for which the coexistence of closeness and openness as well as of distinctiveness and responsiveness seem to be important. Notwithstanding the process of differentiation, the distinct systems and organisations, in this case LTC, should be able to secure autonomy and develop a specific identity even though they need to interact with medical care and related realms (Orton and Weick, 1990, p. 205). From an older person’s point of view, cure is relevant within or during an LTC process, such as in the presence of an acute health problem within a chronic disease. From an organisational or system point of view, knowledge exchange or organisational development can benefit from the adjacent system. This increases the opportunity to develop proper identities for structurally differentiated LTC systems and organisations, with their own visions, and specific values, such as autonomy and dignity. Also it permits more effective and meaningful interaction with respect to the needs of people with care needs who are, in health care settings, primarily perceived as ‘problem cases’ or ‘bed-blockers’ in hospitals.

This so-called transition period can also be characterised by failure, inappro priate solutions and developments that challenge the social tissue in general. In the context of emerging LTC systems, the phenomenon of live-in migrant care workers who provide personal assistance to older people living at home (see Chapter 10) may serve as an example for such a ‘dysfunctional solution’. Due to the lack of available and affordable services, families in Austria, Germany, Greece, Italy, Spain and other countries used the opportunity to find carers from low-wage countries who have been ready to provide care around the clock at affordable prices. These arrangements, coupled with different forms of volunteering and care by families, friends and neighbours, show the idiosyncrasies and contradictions by which LTC remains branded. These concern in particular the blurred boundaries between paid and unpaid, trained and untrained, formal and informal, and even between legal and ‘illegal’ care.

The INTERLINKS contribution in this respect has been to start to cement the stylised ‘ideal’ position of LTC in Figure 1.1 through research on innovations and analyses of practice examples. This includes, for instance, policies and legal regulations, innovative ways of working, innovative modes of governance and financing or support measures for informal carers and older people in need of care that shed light on ho...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• List of Figures, Tables and Boxes
• Preface
• Notes on Contributors
• Acknowledgements
• Part I Introduction
• Part II Overcoming the Health–Social Care Divide and the Formal–Informal Care Divide
• Part III Innovative Cases in the Construction of Long-Term Care in Europe
• Part IV Conclusions
• Appendix A: The INTERLINKS Framework for Long-Term Care – Themes, Sub-Themes and Key Issues
• Appendix B: The INTERLINKS Template to Describe and Analyse Practice Examples
• Bibliography
• Index