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End of Life Care – Elements of Care
The first article in this series, “End of life care - an introduction”, noted that the subject was often stressful for the care staff involved in end of life care.
This is pretty obvious in the case of direct staff, who are closely and often intimately involved with the service user. However, that stress is not confined to those directly involved with the client; those members of the support team who may have only occasional or peripheral direct contact with the client are also subject to the stress of loss and providing the preceding care and support. In some cases, that stress may be very significant if the employer has not recognised their vulnerability and taken steps to train them to be aware of the issues, and have effective strategies for dealing with them. When discussing end of life care, it is sometimes noted that employers mention only the direct care staff and not the support staff, leading to the suspicion that indirect staff may be under-supported in this regard.
In end of life care, a holistic approach is vital, and without full knowledge and an appropriate culture, such support is difficult if not impossible. Therefore all staff involved, however peripheral or fleeting their contact with the service user, must be trained to act appropriately with the service user and to personally cope.
In the first article (End of life care - an introduction) we also noted that according to The NHS National End of Life Care Programme there are 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
These four elements of care are the subject of this article, being the matters which are relevant to each of the six steps of end of life care and are therefore should be a part of the skill set of all staff, whether they are involved directly or indirectly.
Support for carers
The NHS National End of Life Care Programme says this about support for carers:
“Carers are central to the team that cares for somebody at the end of life and they should be treated as partners with the health and social care team. Their own needs should be recognised and taken into account in the planning and provision of care.”
This statement appears on the surface to be obvious and therefore may not be given much attention. However, it is sometimes reported by informal carers and family that professionals providing end of life care are not sensitive to their needs. In the worst cases, the professionals regard the process of supporting the end of a person’s life to be under their control, and the involvement of carers and family to be significantly less important. We know that this is not the case; in fact the reverse is true. The true position of the “professionals” is to support the carers and family of the service user in order for them to continue in turn to support the service user. The professionals are an addition to the pre-existing support team consisting of the carers and family, not a replacement for them. Few things can exacerbate the feeling of impending loss more than the feeling of exclusion.
Carers and family should, if effectively involved, be highly beneficial in assisting the professionals to truly understand the needs of the service user, and respond to those needs in ways which are sensitive to their personality and life history.
In addition to utilising the potential input of the carers and family, those professionals providing end of life care must also be sensitive to the stresses and emotions being felt by them and respond positively to them. The support required extends beyond the required physical and organisational requirements which will include overnight accommodation, easy transport to the care facility whether it is the service user’s home or not, availability of the normal requirements of daily life such as comfort, personal hygiene, food, drink, and space to be withdraw. Someone also needs to be at hand that can understand and respond to the occasions when emotions overwhelm the carers, and they themselves need emotional support to cope. It is not enough to refer the distressed person to the Chaplain or equivalent; an immediate effective response is far better.
None of this will happen unless all the staff involved have been trained to understand the issues, have the culture of involvement and support completely ingrained so that it is second nature, and be aware of the resources and strategies available to them to make it all happen. This need extends to all employees because it is not possible within the intimate relationships to control who the carers and family may have contact with.
Information for patients and carers
The NHS National End of Life Care Programme says this about information for patients and carers:
“People approaching the end of life, their carers, friends and families need to be able to access reliable and relevant sources of information as quickly as possible. This can reduce anxiety and enable and empower people to cope more effectively.”
Experience shows that lack of information, even withheld distressing information, is highly stressful. It is in the nature of us all that we fill in the blanks with our fears. Knowledge of the true facts allows everyone to begin the journey of adjustment which is required when anyone is nearing the end of their life. This applies to the service user themselves and those around them such as family, friends and carers.
Staff need to know what the facts are, what everyone knows, and what information everyone needs in order to be able to respond naturally, immediately, and truthfully at all times.
The NHS National End of Life Care Programme says this about spiritual care:
“Each person approaching end of life has spiritual needs. These may relate to a specific religion or culture or may be unique to an individual’s experiences, values and beliefs.
It is important that an understanding of these needs – however the individual defines them – is part of the assessment process and care delivery.”
The recognition that Life History in care planning is a crucially important tool has improved in recent years. Within end of life care, life history is a tool which can assist those providing care and support to understand the personality and therefore the likely needs, and responses, of the service user. Providing for those with religious beliefs should not pose too many difficulties as there are structures and organisations available to go to for help. However, the person with no religious belief is not relieved of anything; in the absence of that belief they will need a different kind of personal support and empathy to be able to cope with their view of the path along which they are travelling. The staff themselves may need to respond to this need directly, which will require counselling skills.
The NHS National End of Life Care Programme says this about social care:
“Social care is important in supporting individuals approaching end of life and their families. It can help ensure their wider needs – including practical day-to-day requirements – are understood and addressed.”
This is the area where the fact that this particular Pathway is NHS based shows; the NHS is not the natural home of social care, and within that setting the need for social and holistic care has to be laboured to some extent. Providing social care should not be a problem for the independent health and social care sector; social care is at the heart of their service. Having said that, it is sometimes the case even within what are primarily social care settings that the transition into end of life care can move the balance between clinical and social care to the detriment of the overall service. Additional clinical care, if needed, should be in addition to what preceded it, not a replacement for any part of it. Again, all staff need to be aware of this and be vigilant.
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.