End of Life care
The care you get at the end of life should help you to live as well as possible for the time you have left and to keep your dignity throughout. Your healthcare team should take your wishes into account when you are planning your care together.
You may have been told that your illness is life limiting and will not get better. You may want to plan ahead so the people around you know how you’d like to be cared for if you become unable to express your wishes. You may be a family member or friend who wants to know more about how you can support your loved one.
This page guides you to high quality, reliable information on what care to expect in the final months and weeks of life.
If you have any questions or worries, speak to your GP, healthcare team or call Macmillan’s Support Line.
What is end of life care?
When health professionals talk about end of life care, they are usually talking about care for people in the last year of life. But this can be difficult to predict. End of life care forms part of palliative care. Palliative care starts much earlier during cancer treatment and continues until the end of life. Palliative care should help you to live as well as possible, whatever time you have left.
Your GP or healthcare team may refer you to a palliative care team, who care for people with life-limiting illnesses. Your palliative care team may be based in your local hospital or hospice. The team may include nurses, doctors, hospice staff, physiotherapists, occupational therapists, complementary therapists and counsellors. You may also get support from your family and from spiritual or religious leaders.
You should be able to say where you would prefer to receive care and where you wish to die. You may be able to have care at home, in a hospice, in hospital or in a care home. Palliative care can include:
- Pain and symptom control
- Psychological and social support
- Complementary therapies
- Practical and financial advice
- Support for families and bereavement care.
If you choose to stay at home, you may wish to visit your local hospice to get medical and nursing care. You can visit during the day or you may be able to stay for a few days before going back home. The hospice may also offer complementary therapies and creative therapies, like art therapy and music therapy. Your GP can tell you where your local hospice is. Or you can search for hospices on the Hospice UK website, which also has information on palliative care.
The National Institute for Heath and Care Excellence has published guidelines on what care you can expect. They have two guides for patients:
Information for adults who use NHS end of life care services and their families and carers. This guide describes the high quality care you should get.
Caring for adults in their last days of life. This guide describes the care you should get in the last days of life. It includes a list of questions you and your family might want to ask your healthcare team.
Where can I get support and information?
There is a lot of information and support available to help you and your family. The following organisations provide reliable, up-to-date information on coping with a life-limiting diagnosis, making plans, getting the right care and coping with the loss of a loved one.
Cancer Research UK provides information on coping with bad news, talking about dying, what happens in the final days, what happens after someone dies and support for carers.
Compassion in Dying has information on planning ahead and making decisions about your care.
Dying Matters is a group of organisations who aim to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. The website includes information on planning ahead, talking about dying, spiritual beliefs, legal issues, end of life care and support for family. It also has a searchable list of local services.
Family Support NI has a searchable list of bereavement support services in Northern Ireland.
HealthTalk has videos of people talking about how they cope with supporting someone at the end of life and about bereavement.
Macmillan Cancer Support has information on dealing with the news, understanding what will happen, making plans, financial advice and spiritual issues. They also have information for friends and family members on caring for someone near death and coping with bereavement.
Marie Curie provides information on living with a terminal illness, accessing health services, sorting out your finances, supporting someone at the end of life and coping when someone dies.
NHS Direct Wales has a searchable list of bereavement support services in Wales. Click on ‘health, wellbeing and support’ and choose ‘bereavement’ from the pull-down list.
Sue Ryder has information on choosing where you want to die and what to expect when death is near. The website also has information for family and carers on making your loved one comfortable, getting support and coping with bereavement.
Support for children
Talking to children and young people about dying can be difficult. Hospices may give support to you and the children in your family.
The following websites have information for young people who have a family member with a life limiting illness or who have lost a loved one.
CRUSE Bereavement Care provides and information and support to children and has advice on how to help a child or young person who is grieving.
Macmillan Cancer Support has produced a booklet called ‘Preparing a child for loss’.
Marie Curie has information on supporting a child when someone dies.
Riprap is a website for teenagers who have a parent with cancer.
Winston’s Wish supports children who have lost a loved one. They also have some information for young people who have a family member with a life-limiting illness.
Updated October 2016. Due for review October 2018.