The ‘process of dying’: update to main text para 15.25, fn2, page 473
NICE guidance (2017) covering the ‘Care of dying adults in the last days of life’ identifies four key elements:
- ‘Adults who have signs and symptoms that suggest they may be in the last days of life are monitored for further changes to help determine if they are nearing death, stabilising or recovering.’
- ‘Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan.’
- ‘Adults in the last days of life who are likely to need symptom control are prescribed anticipatory medicines with individualised indications for use, dosage and route of administration.’
- ‘Adults in the last days of life have their hydration status assessed daily, and have a discussion about the risks and benefits of hydration options’
NICE noted that the 2016 ‘End of Life Care Audit’ had reported that:
‘…nearly half of all deaths in England occurred in hospital. Spiritual wishes were only documented for one in 7 people who were able to communicate their desires.’
NICE quoted Prof Ahmedzai, from the NICE quality standard committee, stating:
‘Control of pain and other distressing symptoms is very important for dying people, but good end of life care goes far beyond that. It includes asking about the dying person’s spiritual, cultural, religious and social preferences. Only by attending to these issues and concerns can we deliver truly individualised care for each person and those important to them.’
This mirrors the NICE guidance (2011, updated 2013) ‘End of life care for adults’ which stated:
‘People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.’
Importantly the 2017 guidance also specifically indicates:
‘Adults in the last days of life with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating their preferences for care. Healthcare professionals caring for adults in the last days of life should establish the person’s cognitive status, and if they have any speech, language or other communication needs; their current level of understanding; and if they would like a person important to them to be present when discussing preferences about their care. All information provided should be accessible, as far as possible, to people with cognitive problems; and people receiving information should have access to an interpreter or advocate if needed.’
The NICE ‘End of life care for adults’ guidance contained 16 key statements including the following:
- ‘People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.’
- ‘People approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.’
- ‘People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.’
- ‘People approaching the end of life who may benefit from specialist palliative care are offered this care in a timely way appropriate to their needs and preferences, at any time of day or night.’
- ‘The body of a person who has died is cared for in a culturally sensitive and dignified manner.’
- ‘Health and social care workers have the knowledge, skills and attitudes necessary to be competent to provide high-quality care and support for people approaching the end of life and their families and carers.’
See also, the NICE interactive flowchart ‘End of life care for people with life-limiting conditions’.