Specialist care - End of life care
Supporting people who are nearing the end of life to maintain the best quality of life possible, to remain in control and to minimize suffering.
My husband wanted to die at home but the nurse convinced me that he would be better cared for in the hospice. I regret that decision now, I feel guilty, he had no choice or control at the end
End of life care in practice
- Support people to have as much control over decisions, care and treatment as possible
- Support people to die where they want and in a way that they choose
- Provide support to minimise pain and suffering
- Ensure staff are open to talking to people who wish to discuss issues around their death and that they have the training and skills to respond appropriately
- Help people to plan and to say goodbye to loved ones
- Allow people time for reflection and provide professional support where needed
- Encourage, as far as possible, meaningful activity and discussion to support a sense of self-worth and purpose
- Ensure you are fully aware of people’s cultural and religious preferences when providing end of life care
- Provide support for family and carers
- Provide support for those receiving care who may experience bereavement from the death of friends and peers
For more information on end of life care see SCIE's guide to Dying well at home.
What others are doing – ideas you could use
Care Quality Commission - what the regulator says
The CQC is the independent regulator for health and social care services. They have set out Essential Standards of Quality and Safety (CQC, 2010) for all those registered to provide health and social care services. There are 28 outcomes relating to the different aspects of care provision.
What CQC outcomes say about end of life careOpen
Outcome 4 relates to the care and welfare of people who use services. With regard to care at the end of life it requires that people are involved in the assessment and planning for their end of life care and are able to make choices and decisions about their preferred options, particularly those relating to pain management.
See all outcomes in the Care Quality Commission Essential Standards of Quality and Safety (PDF file)
End of life care and dignity – key points from research and policy
- Dignity and the end of life was one of a number of programmes emanating from the National Service Framework for Older People in 2006
- Loss of dignity is a common reason for people seeking euthanasia or assisted suicide (Chochinov et al, 2002a)
- The NHS plan (2000) draws attention to the need to 'recognise the specific needs of older people' in a number of areas including 'making high quality palliative and supportive care available to those older people who need it'
- In 2008 the DH published an End of Life Care Strategy.
End of life care and dignity - more points from policy and researchOpen
For people nearing the end of life and needing health and social care, dignity is vitally important. Government policy has increasingly drawn attention to this area of practice and published the End of Life Strategy in 2008.
Research has shown that dignity is threatened by suffering, and dying with dignity involves – amongst other things - control of suffering, maintenance of a respectable appearance and not dying alone (Woolhead et al 2004). People's choice about how and where they die is very important to them, and maintaining control for as long as possible is key to maintaining dignity. In particular, care should be taken to ensure people’s needs are met in relation to their culture and religious and spiritual beliefs, failure to do so could cause unnecessary, and in some cases extreme, distress.
Advance care planning enables people to plan their future care and treatment and can offer greater choice and control where people may lose capacity to make some decisions. An advance care plan can include preferences and wishes with regard to future care as well as advance decisions, which would be legally binding, to refuse all or some forms of medical treatment if they lose mental capacity in the future. A person could also appoint someone to have Lasting Power of Attorney to make specific decisions on their behalf if there comes a time when they are unable to do so themselves.
The task of enabling staff to support people who are dying should not be underestimated, 'knowing how to provide comfort requires insight into the whole landscape of a dying patient's experience” (Chochinov, 2006). People who are nearing the end of life may wish to share their thoughts and fears about death, indeed some people may express a desire for death. As friends and peers die, the impact of death may be experienced more frequently. To some extent death remains a taboo subject and people around the dying person may feel uncomfortable with discussing it.
Death is inevitably nearer for older people and it is therefore an issue for many people providing health and social care services for this group. It may be easy for staff to overlook the personal experience of those they support who are nearing the end of life, reasons for this may be, for example, avoidance of reflection on one’s own life and the need to properly prepare for death, the fear of death and the emotional impact. The concept of 'fear of future self' (Nelson, 2005) may act as a barrier and affect the ability of staff to empathise with the dying person.
Staff need to receive training and support to enable them to listen effectively and respond appropriately to those they support. The End of Life Care Strategy (link) states that 'End of life care should be included in induction programmes, in continuing professional development and in appraisal systems.' (DH, 2008)
Retention of identity is key to maintaining dignity and particularly important to people at the end of life as they evaluate their life and achievements. A Canadian research group led by Chochinov has developed a ‘Dignity Model’ for identifying threats to dignity for terminally ill people. The model draws attention to illness-related issues, psychological and spiritual issues and external influences that affect dignity (Chochinov 2006). The Dignity Therapy developed by the group is based on the principle that recognising patients as people with histories and legacies to leave promotes their dignity and reduces distress.
‘Although every individual may have a different idea about what would, for them, constitute a “good death”, for many this would involve:
- being treated as an individual, with dignity and respect;
- being without pain and other symptoms;
- being in familiar surroundings; and
- being in the company of close family and/or friends.’ (DH, 2008)
Research has identified six overarching elements relating to the end of life:
- burden – distress at having to depend on others
- suffering – anguish and distress
- hope – sustained meaning or purpose in life
- dignity – self-esteem, respect, wellbeing and pride
- decision-making – planning for change and end of life
- control and autonomy. (Gruenewald and White 2006).
These elements give direction as to how health and care professionals can best support people who are dying. Practice should aim to enable people to keep control and to minimise suffering through good clinical and social care. The feeling for the individual of being a burden, whether it is real or perceived, will be lessened by the provision of good support for carers. This should include carers assessment, involvement in decision making, information about the person’s condition and about services, practical and emotional support and bereavement support (DH, 2008).