What is end of life care?
When someone is approaching the end of their life, the last few days and hours can End-of-life care is the care and support given to someone who is approaching the end of their life. It aims to help a person live as well and as comfortably as possible during this time, while also supporting the people close to them.
End-of-life care is not just about the final days or hours of life. It can begin weeks, months or sometimes longer before a person dies, depending on their illness, circumstances and individual needs.
It is about much more than medical treatment. Good end-of-life care considers the whole person — their physical, emotional, social and spiritual needs — as well as what matters most to them.
What does end-of-life care involve?
End-of-life care is individual to each person. There is no single approach that is right for everyone.
It may include:
- managing symptoms and keeping someone as comfortable as possible
- supporting emotional and psychological wellbeing
- helping someone remain independent for as long as possible
- supporting important relationships and family life
- helping a person make decisions about their care
- respecting their wishes, values and beliefs
- planning where they would prefer to be cared for
- helping with practical matters
- supporting family members and carers
- providing emotional, social or spiritual support
- helping someone prepare for death in whatever way is right for them
- providing care and support for those close to the person after their death
- End-of-life care should be centred on the individual rather than simply their diagnosis.
Who might need end-of-life care?
End-of-life care may be appropriate for someone who is thought to be approaching the end of their life because of an advanced or progressive illness, such as cancer, heart failure, respiratory disease, neurological conditions or another life-limiting condition. It is not easy to give a prognosis or predict life expectancy.
A person may receive end-of-life care because their illness is progressing, because they have become increasingly frail, or because they have reached a point where the focus of their care is changing. Receiving end-of-life care does not necessarily mean that someone is expected to die within days.
Is end-of-life care the same as palliative care?
No, although the two overlap.
The terms palliative care and end-of-life care are sometimes used interchangeably, but they are not quite the same.
Palliative care
Palliative care is an approach to care that focuses on improving quality of life for people living with a serious or life-limiting illness. It can be provided at any stage of a serious illness, and it does not necessarily mean that someone is close to death.
Palliative care can be provided alongside treatments intended to control or manage an illness. For example, someone receiving treatment for cancer may also receive palliative care to help manage pain, breathlessness, fatigue, anxiety or other difficulties.
Palliative care can therefore continue for a considerable period of time months and even years in some cases and may change as someone’s illness progresses.
End-of-life care
End-of-life care is more specifically concerned with supporting someone who is approaching the end of their life.
The focus may increasingly move towards comfort, quality of life, personal wishes and what matters most to the person, particularly when treatments aimed at controlling the underlying illness are no longer beneficial or wanted.
End-of-life care may include palliative care, but it also encompasses many other forms of support and planning.
Where can end-of-life care be provided?
End-of-life care is often provided by a combination of people rather than by one particular professional or service.
Depending on someone’s needs, this might include:
- GPs
- community nurses
- specialist palliative care teams
- hospice staff
- hospital teams
- care home staff
- social care professionals
- carers and family members
- other health and care professionals
- voluntary and community organisations
- end-of-life doulas
Family members and friends can also play an important role in someone’s care and support. An end-of-life doula can provide non-medical practical, emotional, social and informational support to a person and those close to them. Doulas do not replace healthcare professionals or provide medical care.
Does end-of-life care mean that treatment stops?
Treatment does not necessarily stop when someone is receiving end of life care. It depends on their illness, circumstances, wishes and what their healthcare team considers appropriate.
Some people continue to receive treatment for their underlying illness while receiving end-of-life care. At other times, treatment may no longer be helping or may no longer be wanted, and the focus may change towards comfort and quality of life.
These decisions should be discussed with the person and their healthcare professionals wherever possible.
Why is planning important?
Talking about end-of-life care before a crisis happens can make it easier for everyone to understand what matters to the person.
Planning might include thinking about:
- where you would prefer to be cared for
- who you would like involved in decisions
- what treatments you would or would not want
- your wishes and priorities
- who should speak for you if you cannot communicate
- practical and financial matters
- funeral wishes
- important personal, cultural or spiritual considerations
- digital accounts and online belongings
You do not have to make every decision at once. End-of-life planning can be an ongoing conversation that changes as circumstances change. Our My End of Life Wishes Booklet resources can help you explore some of these issues.
What matters most in end-of-life care?
Good end-of-life care is not simply about managing illness. It is about recognising that the person remains a person with relationships, preferences, hopes, fears, values and choices.
For some people, being comfortable and free from distress will be the priority. For others, being at home, spending time with family, remaining independent, attending an important event or resolving something unfinished may matter most.
There is no single definition of a “good death” or a “good end of life”. What matters is understanding what is important to the individual and supporting them wherever possible.
End-of-life care is about living as well as possible
Talking about end-of-life care can feel difficult, but having these conversations does not mean giving up hope.
End-of-life care is about making sure that, when someone is approaching the end of their life, they receive care that is appropriate to their needs and consistent with what matters to them.
It is about living as well as possible for as long as possible, while preparing for death when the time comes.