What is end of life care?
End of life care is support, treatment and care for people who are approaching the end of their life. It aims to help you live as well as possible over the remainder of your life and usually includes:
- talking about and making plans for how you would like to be cared for at the end of your life, such as where you would like to die and your medical preferences – you might hear this referred to as advance care planning
- managing any physical symptoms, including pain relief
- emotional support for you and those close to you
- help understanding what to expect towards the end of your life
- helping you to die with dignity.
End of life care can also involve help with practical issues such as making a will, obtaining financial support for your care needs or planning your own funeral.
Once end of life care begins, your care team’s focus will be on ensuring that you have the best possible quality of life for the time remaining, rather than trying to cure you of any serious illness.
When does end of life care begin?
End of life care should begin when you need it and may last a few days, months or sometimes even years. It depends on your needs and the nature of your health conditions.
As a general rule, people are considered to be approaching the end of life when they are likely to die within the next 12 months. This includes individuals who:
- are very close to death
- have an incurable illness at an advanced stage, such as cancer, dementia or motor neurone disease
- have existing conditions that put them at risk of dying from a sudden health crisis linked to their condition
- have suffered an accident, stroke or other life-threatening event.
Your healthcare team will decide when to start end of life care. They will do that in discussion with you, or those close to you if you’re not able to speak for yourself.
Once end of life care begins, doctors may decide to cease any medical treatments that are no longer beneficial. However, they should continue to review your condition regularly, looking for any signs that you may be stabilising or recovering, even temporarily.
Where can end of life care be delivered?
According to recent research, the majority of people say they would prefer to die at home. But in reality around half of older people actually die in hospital. For some people and their loved ones, this is disappointing and reflects a frustrating lack of choice about end of life care. But for others, the nature and progress of their illness, and the level of care available at home, means that dying in hospital can be the best option in the end.
If you have particular wishes about how you’d like to be cared for at the end of life, the best way to make sure your wishes are followed is to talk to your doctor and those close to you in advance about what you’d like to happen. They can help you think through the options and work out how and where to get the support you need.
If you then put your wishes in writing, everyone involved in your care will know what your preferences are, even if you can’t speak for yourself. For guidance on how to start recording your wishes, see our article on advance care planning.
Who is involved in delivering end of life care?
Various health and social care professionals can be involved in end of life care, depending on an individual’s needs. Some of these will be NHS health and care staff, such as doctors, nurses or physiotherapists, while others may belong to social care agencies, independent hospices or charities.
If you’re at home or in a care home, your GP will have overall responsibility for your care. Community nurses usually play an important role, and family and friends may also be closely involved.
Improving care of those approaching the end of their life is increasingly important in the world of health. In February 2019 the Royal College of GPs (RCGP) and Marie Curie began rolling out the Daffodil Standards – a new set of voluntary guidelines to help GP practices improve care for patients approaching the end of life. GP surgeries displaying a daffodil sign are showing commitment to the new scheme.
Five priorities for care at the end of life
Wherever you’re cared for, the NHS and other healthcare experts recommend that the professionals caring for you should observe the following priorities for care in the last days and hours of life.
- A doctor should examine you regularly, and if they believe you are likely to die soon, they will explain this to you and to your loved ones.
- Healthcare staff should communicate in a sensitive and honest manner with you and the people close to you.
- You should be involved in any decisions about your care, if you would like to be.
- The needs of your family and other people close to you should be met as far as possible.
- An individual care plan should be created, taking your preferences into consideration, and it should be carried out with compassion.
Palliative care helps people with incurable conditions achieve the best quality of life, for as long as possible.
Hospices provide support to people as they reach the end of their lives. Find out about the support they can offer.
We explain the options for paying for care at home, from local authority support to paying for it yourself.