SCIE Research briefing 10: Terminal care in care homes

Published August 2004

Updated September 2005

Introduction - What is the issue?

A SCIE Research briefing provides up-to-date information on a particular topic. It is a concise document summarising the knowledge base in a particular area and is intended to act as a 'launch pad’ or signpost to more in-depth material. The briefing is divided into the different types of knowledge relevant to health and social care research and practice, as defined by the Social Care Institute for Excellence (SCIE).

The topic of this briefing is the provision of care to terminally-ill older people aged 65 and over within care homes (personal care and nursing). The terminal care described here encompasses the principles of palliative care. Terminal care is defined as "the management of patients with active and progressive disease for which curative treatment is not possible or not appropriate and from which death can reasonably be expected" within a timeframe of days or months. The palliative care approach requires "... the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is the achievement of best quality of life for patients and their families". Palliative care is considered to be applicable to all diseases, not just cancer. The majority of care homes are personal or residential, and the majority of these are private. Most terminal care within care homes is provided by generalist care staff; specialist palliative care staff only become involved in certain circumstances.

Key messages

  • More than half a million older people aged 65 or over live in care homes (nursing and personal care) and substantial numbers end their lives in these care settings. The provision of appropriate terminal care is recognised to make the process of dying more comfortable and meaningful for a person and their family
  • There is a lack of detailed standards governing the provision of terminal care to older people in care homes, especially for conditions other than cancer
  • The National Council for Hospice and Specialist Palliative Care Services (NCH&SPCS) is the principal source of documents containing practice recommendations
  • Care homes can only provide appropriate terminal care if barriers to the provision of care are addressed
  • Adequate and appropriate terminal care requires the following: care home staff trained in palliative care; regular access to supporting specialist palliative care staff; resources to support the provision of such care; clear and comprehensive plans of care reaching beyond the management of symptoms alone; training in how to communicate effectively with residents and their families about death and dying
  • Research into factors determining transfer from homes to hospital at end of life, or the appropriateness of such transfers, is lacking
  • Residents of care homes tend to be very conscious of the probability that they will end their life within the home and are very appreciative of efforts to manage death with discretion within these settings. Specialist terminal care and support, including bereavement support, is highly valued by the terminally ill and their families