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05th March 2011

End of Life Care – Last Days of Life

This article is the seventh in a series about end of life care.

The first article in the series is “End of life care - an introduction”, which set out the framework to be expanded in the series.  In that article we noted that there were a number of sources of information regarding end of life care.  These include the NHS National End of Life Care Programme, the National Gold Standard Framework, and the Social Care Institute for Excellence (SCIE) resource “Dementia Gateway”.   The second article is entitled “End of life care – elements of care”, and considers the four elements of care which should be present throughout the six steps of the Programme. The third recent article, entitled “End of life care - Discussions as the end of life approaches”, dealt with the need to open up frank and transparent communications at the very beginning of a person’s journey towards the end of their life.  The fourth article, entitled “End of life care – assessment and care planning ” briefly revisited the principles of care planning, with particular reference to end of life care.  The fifth article, “End of life care – Service delivery” dealt with the critical importance of co-ordination between the various agencies and personalities who become involved in end of life care.  The last article, “End of life care – Last days of life” dealt with aspects of service complexity and coordination.

In this article we examine Last days of life.

As a reminder, the NHS National End of Life Care Programme lists six steps in the end of life care pathway:

  • Discussions as the end of life approaches
  • Assessment and care planning
  • Coordination of care
  • Service delivery
  • Last days of life
  • 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

Last Days of Life

The NHS National end of Life Care Programme web page on this subject states:

“The point comes when an individual enters the dying phase. It is vital that staff can recognise that this person is dying, so they can deliver the care that is needed. How someone dies remains a lasting memory for the individual’s relatives, friends and the care staff involved.”

The statement may seem obvious, but experience shows that in a busy or distracted care environment, there is sometimes not recognition of the time of transition from continuing care or critical care, to a recognition that the last few days have been entered.  Without that recognition, and a planned response which includes specific support for the service user informal carers and family, the care and support delivered in the final days will not be adequate, and may even be seriously deficient.  Intensive formal review of the information which should be being recorded in the care planning documentation is vital, so that as clear a picture of the trajectory of the service user is available at all times.

When entering the final days, changes to arrangements may be required depending on the setting.  For instance, the service user may not have had companionship on a fully 24 hour basis prior to this point, but may now value that comfort.  Those close to the service user, family and friends, need to be informed and counselled regarding what is now about to happen.  They may need specific advice on the likely physical changes which are about to take place, in order to reduce possible shock and distress.  They will also need to know what arrangements are being made for the comfort of the service user, and be involved in those plans so they can impart their particular knowledge of the service user’s personal likes, dislikes and physical characteristics.  The possibility of the service user showing signs of anxiety and depression will need to be openly discussed, and tactics to identify this and alleviate it where possible explained so that everyone does not become unnecessarily distressed.    Contact with religious services may be advised, and arrangements made for visits out of the normal schedule.

The need for reassurance is not focussed solely on the family and others close to the service user.  There is likely to be a need for the service user to be reassured that those who they love and are being left behind are adequately supported, and this may include again religious support, and knowledge that “the family is pulling together”.  It is the responsibility of the care service provider to ensure that all of these matters are attended to by information giving, contacting, supporting visiting and communication, and above all not giving one hint that any of this may be interruption the care service itself.

The list of matters to attend to is long; we have not considered the physical and medical matters which also need to happen with seamless efficiency during this period, because that is the responsibility of the specialist support and will vary depending on the circumstances.  As noted in previous articles, the care and support service for a person who is dying needs to be coordinated by one very capable person, integrated to a high degree, and delivered by people who have a high level of specific training and education in palliative care.

In order to support the complexity of the changes and arrangements required for end of life care, and the final days in particular, a comprehensive assessment and recording system is required, which will be different to the normal assessment and care planning process in order to ensure that all the details are covered.

Tameside and Glossop NHS Trust use one such specific documentation set (see in order to organise their end of life care.  The document set consists of, in addition to the usual accountability signature forms, an assessment, followed by a comprehensive daily assessment in order to track what is likely to be a fast changing situation.  The advantage of requiring a new assessment to be carried out daily is that there is less likelihood of changes being missed, which is painfully possible when an initial assessment is simply reviewed.  The daily documentation also allows for mini-reviews during the 24 hour period in order to pick up changes as they happen, which in this instance are called “Variances”.  Those variances are recorded elsewhere as well, and an analysis is made and recorded of the action taken as a result of the change.  Finally, the documentation sets out flow charts for the use of medications, which as well as confirming the procedure for the care staff, can also be used to inform and reassure family and friends that the care being given is properly planned, differing eventualities are anticipated, and warn them of procedures which may be distressing if unexpected.    The document set, within the daily assessment, also includes those non-medical matters such as family and spiritual support.

The overall lesson of phase 5 of the End of Life Pathway, “Last days of life”, is, as always, planning, assessment, planning again, recording and review, and information giving.

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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