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What is end of life care?

Are you seeking information and further guidance on how to make decisions together about end of life care? Or perhaps you have recently lost a loved one and need help with immediate practical, legal, and financial issues as well as coping with grief. Whatever the situation, time will be precious to you.

There is already a wealth of information for carers about end of life care, both on the internet and in leaflet form; however, it is sometimes difficult and time-consuming to find and work through.

You and the person you care for will come across a lot of confusing terms and language when first receiving a diagnosis. In particular, there is a lot of confusion about what is palliative care and what is end of life care. 

A life-limiting illness is an illness for which there is no cure, for example, motor neurone disease, dementia, or advanced cancer. Sometimes this is referred to as a terminal illness.

Palliative care

Palliative care is the treatment, care, and support for people with a life-limiting illness and their families and carers. Any treatment for the person you care for at this stage will be to manage their symptoms to ensure they have the best quality of life and to live as well as possible in the time left. It will concentrate on identifying their needs, preferences, and wishes and will include support to you and other family members, both practical and emotional.

Palliative care can be provided at any stage of such life-limiting illness but it does not necessarily mean the person is about to die. You may find the person you care for receives palliative care for several years. Palliative care may also be given to someone as they approach end of life, although more frequently this is then referred to as end of life care.

End of life care

End of life care is often considered to be provided in the last year of life, but this varies from person to person and diagnosis to diagnosis. Some people may receive end of life care in just their last few weeks or even days. 

​End of life care helps the person you care for to live as comfortably and pain-free as possible and involves managing often complex physical symptoms. It also ensures you, as their unpaid carer, get the emotional support that you need. 

End of life care also involves talking about what to expect towards the end of life: talking about what is important to the person regarding their needs and wishes, dealing with practical issues such as making a will, as well as thinking about what practical and emotional support you need.