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End of Life Care: Care after Death and Common Themes
This article is the eighth and final instalment 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 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 – Coordination of Care” dealt with the critical importance of co-ordination between the various agencies and personalities who become involved in end of life care. The sixth article, “End of Life Care – Service Delivery” dealt with aspects of service complexity and coordination. The following, seventh article was entitled “End of Life Care – Last Days of Life”, and dealt with good practice during the final days of the service user’s life, when death is imminent.
In this article we examine Last days of life – Care after death.
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
Care after death.
The NHS National end of Life Care Programme web page on this subject states:
“Good end of life care doesn’t stop at the point of death. When someone dies all staff need to follow good practice which includes being responsive to family wishes. The support and care provided to relatives will help them cope with their loss.
It goes on to say:
Care after death includes
- Honouring the spiritual or cultural wishes of the deceased person and their family/carers while ensuring legal obligations are met
- Preparing the body for transfer to the mortuary or the funeral director’s premises
- Offering family and carers present the opportunity to participate in the process and supporting them to do so
- Ensuring that the privacy and dignity of the deceased person is maintained
- Ensuring that the health and safety of everyone who comes into contact with the body is protected
- Honouring people’s wishes for organ and tissue donation
- Returning the deceased person’s personal possessions to their relatives.
The first point depends on having previously determined and recorded the wishes of the deceased person and their family. It is obviously too late when death has occurred; the choices may even have been made a considerable time previously in certain cases, for instance as part of an early diagnosis of dementia. Poor quality recording at a time when early and irretrievable choices are made will inevitably cause degradation of the information, with the potential of causing avoidable distress.
The second and third points, referring to arrangements for the care and transfer of the body are highly delicate and stressful for all concerned. Family reactions can range from wishing for no part in the process, through the full range to wishing to have complete involvement. The professional care staff involved must have had full prior access to and understanding of the family’s wishes in order to meet their expectations sensitively.
The point regarding privacy and dignity should be ingrained in professional care staff; however, if they have not had good quality training in handling death, embarrassment, mis-understanding, and shock can all intervene to produce inappropriate behaviour. Those managing end of life care and staff allocation must take responsibility for ensuring that those exposed to the stress know how to deal with it, and thereby act appropriately. The bad old days of “you will get used to it” are long gone.
The final two points, on health and safety and possessions, should be covered by standard training and application of procedures; the QCS management system for instance covers both areas thoroughly. Staff should, as in all matters of quality management, have full access to the management system, and have a thorough knowledge of its contents.
The NHS National end of Life Care Programme web site refers to a downloadable guide of best practice for staff engaged in care after death; this is available at:
Throughout the detail of the NHS National End of Life Care Programme, which has taken eight articles to logically set out, there are some themes which recur in several steps.
Open, frank and honest discussion
Highly competent and detailed assessment
Highly competent and detailed care planning
Staff expertise and attitude
Strong leadership and coordination
These requirements are of course essential elements for care at all times, in all places, and for all service users. However, during the high stress of end of life care, there can be no compromise allowed in the delivery of each element. End of life care requires such a comprehensive range and depth of competence that no care service should ever fall into the trap of assuming that staff who cope reasonably competently with normal care delivery can therefore deliver end of life care. Staff who are involved in end of life care need to be competently selected for appropriate attitudes and very well trained. Service users and families moving towards the end of a life deserve the best, with no compromises.
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.
*All information is correct at the time of publishing