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What end of life care involves

 

End of life care is support for people who are approaching death. It helps them to live as well as possible until they die, and to die with dignity. It also includes support for their family or carers.

End of life care includes palliative care. If you have an incurable illness, palliative care will make you as comfortable as possible by controlling pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, as it deals with the "whole" person rather than just one aspect of care.

You may receive palliative care early in the course of your illness, together with other therapies to treat your condition, such as chemotherapy or radiotherapy, before you are considered to be nearing the end of your life.

In this end of life care guide, "end of life care" also covers legal issues, such as creating a lasting power of attorney, so that the person or people of your choice can make decisions about your care if you are no longer able to do so.

 

Who provides end of life care?

Many healthcare professionals can be involved in providing end of life care, depending on your needs.

Hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors might all be involved, as well as social services, religious ministers, physiotherapists or complementary therapists.

Most hospitals have special palliative care teams who co-ordinate all these services. As a patient, you have the right to choose where you want to receive care and where you want to die.

A palliative care team can provide end of life care to patients and their families in hospitals, care homes, hospices and at home.

 

When does end of life care begin?

When end of life care begins depends on your needs.

The General Medical Council considers patients to be approaching the end of life when they are likely to die within the next 12 months.

This includes patients who are expected to die within the next few hours or days, and those with advanced incurable conditions. It can also include people who have: 

  • general frailty and co-existing conditions that mean they are likely to die within 12 months

  • existing conditions, if they are at risk of dying from a sudden crisis in their condition

  • life-threatening acute conditions caused by sudden catastrophic events, such as an accident or a stroke

End of life care may last a few days, or for months or years, beginning and ending when you need it.

This guide also contains information about planning ahead for your future care.

 

Planning ahead for the end of life

If you have a terminal illness, or are approaching the end of your life, it may be a good idea to make plans for your future care.

Planning ahead in this way is sometimes called "advance care planning", and involves thinking and talking about your wishes for how you are cared for in the final months of your life.

People usually carry out advance planning because they have a condition that is expected to get worse, which may mean they will not be able to make or communicate their decisions in the future.

Anyone can plan for their future care, whether they are approaching the end of life or not. Advance care planning can let people know your wishes and feelings while you're still able to.

These links take you to more information on the following topics:

Why plan ahead

Find out how you and your family, friends and carers can benefit from planning ahead for your future care.

Advance statement

Find out what an advance statement is, and how you can create one to let people know your wishes.

Advance decision to refuse treatment

If you don't want certain kinds of treatment in the future, you can make a legally binding advance decision.

Lasting power of attorney

Find out how you can legally appoint someone to make decisions about your care in the future if you become unable to make decisions yourself.

Making a will

This links to the GOV.UK website, which has information on how to make a will. This will ensure that your property and finances are dealt with in accordance to your wishes after your death.

Your wellbeing

Looking after your health and wellbeing is important when you are living with a terminal (life-limiting) condition.

The articles listed on this page aim to answer questions you may have about pain and other symptoms, and to provide ideas for coping with your situation. There are also suggestions about how to talk to your family, friends and children about your illness.  

Coping with a terminal illness

Information, sources of support and tips from experts on how to cope with a terminal diagnosis.

Managing pain and other symptoms

Find out how pain and other symptoms, such as constipation, can be managed. Includes self-help suggestions.

Ways to start talking about the fact that you are dying

Ideas on how to bring up the topic of your illness and the future, with suggestions of words you can use and booklets that might help.

Talking to your children

If you have children, it may feel very difficult to talk to them, but talking can prevent them from being alone with their worries. Find some suggestions here.

Life at the Hospice of St Francis

Dr Ros Taylor explains hospice care in general, and talks about the care provided at the Hospice of St Francis, where she is director.

Physical changes in the last hours and days

This article offers information about changes to your body that may happen in the last stages of life.