X

Palliative care in long-term care settings for older people

This task force 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 task force 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 task force 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:

  • To define long term care settings for older people and the nature of palliative care in these settings;
  • 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;
  • To map palliative care initiatives in long term care settings for older people across different countries.
  • 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:

  • 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
  • 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/

Milestones 

1.To define long-term care settings for older people and the nature of palliative care in these settings

Action
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

Action
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

Action
The initiatives identified have been presented by country, as well as their focus and  benefits.
 
4. To create a compendium of good practice intervention

Action
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/

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 - Austria

Jo Hockley - UK

Kevin Brazil -  Belfast

Roland Kunz - Switzerland

Deborah Parker - Australia

Bettina Sandgathe-Husebø - Norway

Rosaline Pasman -Amsterdam


ADVISORY COMMITTEE

Sigrid Beyer - Austria

Mary Carron -  Ireland

Curiale Vito -Italy

Luc Deliens - Netherlands

Hubert Jocham - Germany

Mary Lou Kelley - Canada

Frank Kittelberger - Germany

Sophie Pautex - Switzerland

Jenny van der Steen - Netherlands

Marie-Claire Van Nes - Belgium

Sue Hall - 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 activitie