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Mapping palliative care systems in long term care facilities for older people in Europe

Background

The Task Force ‘Palliative Care in Long-Term Care Settings for Older People’ completed in 2012 mapped the provision of long term care types of long term care facilities (LTCFs) in 13 European countries, identifying key drivers for introducing palliative care, and describing examples on how palliative care is developed and provided in these countries. However, a number of important geographic regions of Europe were not represented and the development of palliative care systems in all countries was not systematically mapped and classified. This new task force is extending the mapping to encompass 29 countries in Western, central and eastern Europe and seek further information about models of palliative care service provision in LTCFs.

This task force links with the activities of the EAPC Task Force on the Development of Palliative Care in Europe by integrating country reports on palliative care in LTCFs as a supplement to the revised European Atlas of Palliative Care (www.eapcnet.eu), a resource for service development, strategic policy-making initiatives and benchmarking. This Atlas on palliative care shows individual country reports on palliative care development across Europe, and has only reported generally about LTCFs in some countries.
 
Building upon the EAPC Task Force ‘Palliative Care in Long-Term Care Settings for Older People’ completed in 2012, a new Task Force was established under the auspices of an EUFP7 research programme: “Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe” (PACE). The aim is to consider and classify models of palliative care provision in long-term care facilities (LTCFs) across 29 western, central and eastern European countries. A documentary review and country survey working with identified leads in each country is being undertaken.

 
Aims & objectives

To map and classify different structures, organizational models, and policies related to palliative care provision in long term care facilities in Europe.
 

Objectives

  • To map the numbers, nature and types of LTCFs
  • To identify the proportion of deaths in LTCFs
  • To describe the funding and regulatory context for LTCFs
  • To describe existing formal palliative care structures or services, organizations and policies at local, regional, national or international level and their development in LTCFs
  • To collate examples of current palliative care practices and innovative approaches and their evidence base

Milestones

The Task Force entails two strands of work working closely with representative lead experts in 29 European countries. Representatives/country leads are experts in the field of palliative care in LTCFs with relevant clinical practice, research and/or education experience in this area. They have links to experts and specialist contacts within their respective countries. Alongside the EAPC, the following partner organisations: European Forum for Primary Care, AGE – Platform Europe, and Alzheimer Europe are calling on their members to provide input, and are delivering policy content and overviews, and identifying relevant information from other stakeholders.The country information will be collected and verified using two approaches:

1.        Documentary review

The best practices identified by Age-Platform Europe under the Eustacea project (supported by the European Commission’s Daphne III Programme) and its follow-up project WeDO on the Wellbeing and Dignity of Older People have been screened for relevance for LTCFs and integrated in respective country information.
Outputs from completed EU projects and bodies (Ancien, Interlinks, Shelter) have been searched for relevant country information. 

2.        A survey, using a structured questionnaire, has been circulated to country leads to collate information from national organisations, government departments and networks of long term care providers about:

  • population, nature and types of LTCFs 
  • proportion of deaths in LTCFs
  • funding and regulatory context
  • existing formal palliative care structures or services, organizations and policies at local, regional, national level and use in LTCFs
  • examples and evidence for current palliative care practices and innovative approaches

Based on the data collected, palliative care activities will be classified into different types of palliative care systems and practices, alongside their occurrence. Key common palliative care components will be identified.

Ethics approval is not needed as the information sought is already available in the public domain and published literature.

Partners

  • PACE project partners:
    Vrije Universiteit Brussel, (BE), Università Cattolica del Sacro Cuore (IT), National Institute for Health and Welfare (FIN), Uniwersytet Jagiellonski (POL), Stichting VU-VUMC (NETH), Stichting Katholieke Universiteit (NETH,) Universiteit Gent (BE) 
  • European Forum for Primary Care 
  • AGE – Platform Europe
  • Alzheimer Europe  

 
Financial Plan, Budget

Funding is provided to undertake the work of the Task Force as part of a study funded by EUFP7: Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe (PACE).

Chairs

Katherine Froggatt
Senior Lecturer
International Observatory of End of Life Care, Lancaster University, Researcher/Nurse, UK

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Lieve Van den Block
Professor of education and communication in general practice
PACE coordinator, Vrije Universiteit, Brussel, Psychologist, BE

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Steering committee

The Steering Committee will comprise representatives of the EU funded PACE partner organisatons. Listed are the current leads from each partner organisation. The representative from each organisation will be confirmed once EU-PACE commences in February 2014.

Katarzyna Szczerbińska
Uniwersytet Jagiellonski (POL)

Harriet Finne Soveri
National Institute for Health and Welfare (FIN)

Anne-Sophie Parent
AGE – Platform Europe


Members

To be invited from previous taskforce:

Kevin Brazil
Queens University, Belfast, UK

Katharina Heimerl
IFF-Palliative Care and Organisational Ethics, University of Klagenfurt, Vienna,

Jo Hockley
St Christopher’s Hospice, Sydenham, London, UK

Hazel Morbey
International Observatory on End of Life Care, Lancaster University. UK

Deborah Parker
University of Queensland, Brisbane, Australia

Elisabeth Reitinger
IFF-Palliative Care and Organisational Ethics, University of Klagenfurt, Vienna, Austria



 

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