End of life care

2. End of life and palliative care

End of life care aims to support someone with advanced incurable disease to live as well as possible until they die. It also aims to support family and carers during this time and after the person dies. End of life care may last for weeks, months or years.

Good end of life care focuses on the quality of the person's life and death, not on the length of life. It supports the person to die naturally and with dignity when the time comes. It covers all aspects of wellbeing: physical, psychological, social and spiritual.

For many people a 'good death' means being treated with compassion and respect; being kept clean, comfortable and free from distressing symptoms; and being in a familiar place surrounded by those close to them.

Palliative care shares the same aims as end of life care. But there is a particular emphasis on actively doing things to relieve (palliate) discomfort or distress (whatever the cause), rather than on curing the underlying illness. This means addressing symptoms as they arise for that individual.

End of life care for a person with dementia requires a team approach, including the GP, community nurses, social worker or care home staff – among others. Palliative care staff at a local hospice or hospital may give specialist input as required. The team should keep you updated as the person's condition changes and involve you in any decisions.

The person should always have an up-to-date care plan that includes end of life plans and is shared with those involved in the person's care as appropriate. Some areas have special staff who coordinate end of life care for people with dementia. Ask the GP, community nurse or local hospice (if you have one) about what is available in your area.