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TF Palliative care in long-term care settings for older people - CONCLUDED

This taskforce started its work in March 2010 and has produced a report entitled "Palliative Care in Long-Term Care Settings for Older People" that you can download here as well in the results-outcome section on this page.

Background

There is growing recognition across Europe and other developed countries of the changing demography of nations that is leading to an older population. A significant proportion of older people die in long-term care settings (approximately 20% in the UK). Older people living in such settings often have complex trajectories of dying: many people live with non-cancer co-morbidities, and there is a high prevalence of dementia in this population. This raises challenges for medical, nursing and other practitioners in terms of dealing with physical and psychological symptoms, spiritual and social needs and other aspects of palliative care.

Given the marginalization of these institutions for older people within mainstream society with respect to funding for care, and research, there is a need to maximize resources and expertise. It is recognised that a sharing of good practice between countries and also between palliative care specialists, the hospice movement and long-term care practitioners would be beneficial. It is acknowledged that the work of this Taskforce focuses on a specific setting where older people live and does not address all models of housing for older people.

Since 2007, an on-going strand of work has been developed across Europe, under the auspices of the European Association of Palliative Care (EAPC). Informal meetings were held about palliative care in long-term care settings attracting between 15 and 30 participants from twelve countries at conferences in 2007 (Budapest), 2008 (Trondheim) and 2009 (Vienna). Two invited symposia on long-term care and palliative care were on the conference programme in 2007 and 2009. In 2010 the EAPC Taskforce was formally recognised. This work will be the first collation of data across Europe in this area.

Summary

With an ageing population, increasing numbers of older people live and die in nursing homes and other long-term care settings. There is a need to look across Europe in order to understand how palliative care is developed in long-term care facilities and to map current developments supporting the provision of palliative care in long-term care facilities.

Aims and Objectives

The aim of this taskforce is to identify and map the different ways of developing palliative care in long term care settings.
In order to do this we will address the following objectives:

  1. To define long term care settings for older people and the nature of palliative care in these settings;
  2. To identify practice development initiatives being undertaken to develop and impact on the provision of palliative care in long term care settings for older people;
  3. To map palliative care initiatives in long term care settings for older people across different countries.
  4. To create a compendium of good practice interventions in relation to palliative/end of life care in long term care settings for older people.

Results, outcome, narrative report as at 21.1.2013

Two areas of findings have been generated:

  1. An overview of the context of care in long-term care facilities is provided for 13 European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Spain, Sweden, Switzerland and UK). Information has been collated about: the older population, the nature and types of long-term care settings, the wider funding and regulatory context and other key drivers for change that would impact upon the development of palliative care within the setting
  2. Information about practice development, educational and research initiatives that had sought to develop palliative care practice within the long-term care setting were collected from each country. Data about each initiative, its focus and impact was requested. A compendium of current practice interventions for long-term care settings and palliative care practitioners has been developed. This can be accessed at the following webpage, on the right hand side: http://www.lancaster.ac.uk/fhm/research/long-term-care-settings-for-older-people/

The table lists all initiatives by country. For further information about each example, click on the left hand code eg Aut1, and this will direct you to a further document.

Objective Actions
1. To define long-term care settings for older people and the nature of palliative care in these settings A working definition of long-term care settings for older people was presented and provided focused parameters for the Taskforce. An inclusive definition of palliative care was used.
2. To identify practice development initiatives being undertaken to develop the provision of palliative care in long-term care settings for older people Information on over 60 initiatives from 12 European countries has been provided. A modified typology for change has been proposed that allows the complexity of such initiatives to be acknowledged.
3. To map palliative care initiatives across different countries The initiatives identified have been presented by country, as well as their focus and benefits.
4. To create a compendium of good practice interventions. A summary compendium is presented in Appendix 4 of this report, and is also available online at www.lancs.ac.uk/shm/research/ioelc/projects/eapc-taskforce-ltc/

 

The full report can be downloaded here.

Publications

Click here to view the list of publications

Future work

Although the Taskforce has completed its current mapping work, the partners involved in the Taskforce are actively seeking further funding to continue working together and expand the mapping activity to include other countries in Europe.

The compendium of current practice can be added to with examples from any country. To do so please e-mail Katherine Froggatt with the completed template which can be downloaded here

Please e-mail to Katherine Froggatt

 

Chairs

Katherine Froggatt
International Observatory of End of Life Care
Lancaster University
Lancaster, UK

click here to contact by email


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

click here to contact by email

Members

STEERING COMMITTEE

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

Jo Hockley
St Christopher’s Hospice
London, UK

Kevin Brazil
Queens University Belfast

Roland Kunz
Palliative Geriatrics
Hospital Affoltern, Switzerland

Deborah Parker
University of Queensland
Brisbane, Australia

Bettina Sandgathe-Husebø
Department of Public Health and Primary Health Care
Kavli`s Research Center for Dementia
University of Bergen, Norway

Rosaline Pasman
Amsterdam


ADVISORY COMMITTEE

Sigrid Beyer
Hospice Austria

Mary Carron
Irish Hospice Foundation, Ireland

Curiale Vito
Italy

Luc Deliens
VU Medical Center
Netherlands

Hubert Jocham
Home Care Akademie, Germany

Mary Lou Kelley
Lakehead University, Canada

Frank Kittelberger
Fachstelle Hospizarbeit & Palliativkultur
Germany

Sophie Pautex
University Hospital
Genève, Switzerland

Jenny van der Steen
VU Medical Center
Netherlands

Marie-Claire Van Nes
CHR de la Citadelle
Liège, Belgium

Sue Hall
Department of Palliative Care Policy and Rehabilitation
Kings College London, UK 

Johann Baumgartner
Austria


A WIDER NETWORK of about 34 other members who are interested in this area of work and will be involved in the identification of good practice examples and dissemination activities.

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