What end of life care involves
End of life care is support for people who are in the last months or years of their life. End of life care should help you to live as well as possible until you die, and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.
You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home or in care homes, hospices or hospitals, depending on your needs and preference.
People who are approaching the end of life are entitled to high-quality care, wherever they’re being cared for. Find out what to expect from end of life care.
Who provides end of life care?
Different health and social care professionals may be involved in your end of life care, depending on your needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.
If you are being cared for at home or in a care home, your GP has overall responsibility for your care. Community nurses usually visit you at home, and family and friends may be closely involved in caring for you too.
What is palliative care?
End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a “whole” person.
Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition.
Who provides palliative care?
Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses.
Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses or specialist occupational therapists or physiotherapists.
Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.
Palliative care services may be provided by the NHS, your local council or a charity.
When does end of life care begin?
End of life care should begin when you need it and may last a few days, or for months or years.
People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.
People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness such as cancer, dementia or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- have existing conditions if they are at risk of dying from a sudden crisis in their condition
- have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke
The National Institute for Health and Care Excellence (NICE) produced new guidance in December 2015 on the care of adults in the last two to three days of life. This guidance covers how to manage common symptoms, and dignity and respect for the dying person and their relatives and carers. The Ambitions programme 2015-2020 also sets out further guidance, identifying six ambitions for healthcare providers to improve patient experience of palliative and end of life care, and their relative’s experience.
Planning for your future care
In this end of life care guide, “end of life care” also covers legal issues to help you plan ahead for your future care. These include 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 yourself .
Helpful phone numbers for advice on specialist palliative care and symptom control:
- North Devon – North Devon Hospice 24hr advice line – 01271 347214
- Specialist Palliative Care Team NDDH – 01271 311642