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23rd January 2011

End of Life Care – An Introduction

End of life care appears to be a subject causing some anxiety in the care sector. The emotions and stresses arising from natural desire to meet the needs of the service user are enhanced by the additional sentiments surrounding the end of life.

The reaction of care staff to the situation ranges from seeking further information and skills to help them deal with the emotions, to denial.  Denial is especially prevalent when death is not an immediate prospect and the matter can be put off, or so it seems.  However, everyone dies at some time; it is the responsibility of care services, which are in that unique position of supporting the whole life of the service user, to consider that fact and not duck their obligations.  And death is not the sole preserve of the aged; unfortunately people meet the prospect of imminent or expected death at all ages, and therefore end of life care techniques and issues are not solely to be related to older people.

It is possible that one of the stresses felt by care staff is the knowledge that there are specific national expectations with regard to end of life care, but the means or the time have not been available to them to research and understand those expectations.  This article is intended to be the first in a series which will look in detail at the area, and attempt to summarise and contextualise the wealth of material and expectations out there.

Evidence that the topic is currently relevant, and a part of its problem, is the appearance of jargon.  The very phrase “end of life” is not one which was in general use beyond the recent past.  The term may have been developed in order to neutralise the discomfort in the use of the word death and promote its wider discussion.  A recent QCS article has described Advance Care Planning ; Pathways is now a common term, sometimes with little explanation of the meaning.  The Gold Standard is another phrase bandied around, as is Dementia Gateway.  Hopefully the series of articles can explain what practical issues are behind the jargon, and provide some relief from the stress caused by it.

There are very significant sources of information on end of life care, which the author intends to use as the basis for the series of articles.  One of these is the NHS National End of Life Care Programme.  Another is the National Gold Standard Framework.  Both of these sources can at first glance appear to be only relevant to high intensity care, such as is usually delivered in a nursing home or hospital.  However, this is not the case, and one of the objectives of the series of articles will be to demonstrate the wide applicability of the approaches, and provide practical pointers as to how care services of all kinds, location and intensity can and should follow best practice end of life procedures.  That the topic has wider relevance than “terminal care” is demonstrated by another information source, the Social Care Institute for Excellence (SCIE) resource “Dementia Gateway”.

Within the SCIE resource is the statement that

“Dementia is not always recognised as a terminal illness or the actual cause of death, often because there may also be other health problems, such as cancer or heart disease, which may be the main health concern. Dementia is, however, a terminal illness.” (SCIE – Dementia Gateway)


“Typically, when a person with dementia moves into a care home they die within two years of admission” (SCIE – Dementia Gateway)

Is the subject of end of life care relevant only to care home settings?  Absolutely not.  The natural consequence of the policy to support people, as far as is possible, in their own homes and reduce institutional admissions means that an increasing portion of the end of life journey happens in peoples own homes.  Therefore staff providing care at home need to be aware of the issues, and have the required skills and resources.  Is it only relevant to the NHS?  Again definitely not.  While the NHS, in the event of a known prognosis of imminent death, may drive the design of end of life care, they will in only a minority of cases be the only provider of end of life care, and even that will often be of short duration.  It is far more likely that the NHS will provide some temporary support, and that, if most people’s personal wishes are met, end of life will actually occur in the service user’s home, be that a care home or their family home.

Having hopefully demonstrated the wide applicability of the need to seriously consider end of life care, and the skills and resources required for its successful deployment, we need to consider the elements of end of life care.

The NHS National End of Life Care Programme lists six steps in the end of life care pathway:

  1. Discussions as the end of life approaches
  2. Assessment and care planning
  3. Coordination of care
  4. Service delivery
  5. Last days of life
  6. Care after death

The Programme also lists four elements of care which should be present throughout the six steps listed above.

  • Support for carers
  • Information for patients and carers
  • Spiritual care
  • Social care

In the next few weeks we will consider each of these steps and elements in turn, explaining their application to real services of all kinds, and some practical examples of best practice.  We intend to base the articles on the NHS National End of Life Care Programme, adding in and integrating other sources as we proceed, and all the time making the approach relevant to private and third sector care service providers.

For those with a need for more information urgently, sources of further information are:

Social Care Institute for Excellence (SCIE) Dementia Gateway.

The Gold Standards Framework.


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