National guidelines for end of life care
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On this page we summarise the guidelines for caring for adults in their last few days and hours of life. There are different guidelines for England, Wales, Scotland and Northern Ireland. The guidelines recommend ways that professionals should work to provide the best care for people at the end of their lives. Most importantly, end of life care should be person-centred. This means treating the patient as an individual and considering what matters most to them.
Key points
- End of life care should be person-centred.
- Follow national and local guidelines for caring for people at end of life. There are different guidelines for England and Wales, Scotland and Northern Ireland.
- Communication between staff and the dying person should be sensitive, clear and timely.
- Involve the dying person and those important to them in decisions about their care.
- Identify, and meet, each person’s physical, psychological, social and spiritual needs.
- Meeting a person’s needs may require many members of the multidisciplinary team.
- Offer support to the dying person’s family, carers and others important to them.
- Caring for someone at the end of their life can be distressing. Look after your own wellbeing and ask for help and support if you need it.
England
One Chance to Get it Right 2014
In 2014, the Leadership Alliance for the Care of Dying People published a document on caring for people in the last few days and hours of life . It looks at the needs and wishes of the dying person and those close to them in planning and delivering care, in any setting.
It highlights five priorities for care. These can be used as a guide for providing the best possible care for people with terminal illnesses and those important to them.
When a person may die within the next few days or hours:
- This possibility is recognised and communicated clearly, decision made and actions taken in accordance with the person's needs and wishes, and these are regularly reviewed and decisions revised accordingly.
- Sensitive communication takes place between staff and the dying person, and those identified as important to them.
- The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
- The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
- An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.
NICE guidelines and quality standards
The NICE guideline [NG31] Care of dying adults in the last days of life 2015 provides clinical recommendations for the care of adults in their last two to three days of life. This guideline is used in England, Wales and Northern Ireland.
The NICE guideline [NG142] End of life care for adults: service delivery 2019 covers organising and delivering end of life care services and the planning and preparation needed.
The NICE guideline [NG197] Shared decision making 2021 covers how to involve shared decision making in all aspects of care. It promotes ways for healthcare professionals and patients to work together to make decisions about treatment and care.
The NICE quality standard [QS144] Assessing signs and symptoms 2017 describes the standards of care required to meet the guidance of NG31 Care of dying adults in the last days of life.
The NICE quality standard [QS13] End of life care for adults 2021 covers care for adults approaching the end of life. It also covers support for their family and carers.
National Palliative End of Life Care Partnership Ambitions framework 2021
This framework outlines the vision for 2021-2026 and the six ambitions the partnerhsip hopes to achieve. Read the full framework here.
Every Integrated Care Board (ICB) is required to commission palliative and end of life care in line with this framework. Read the statutory guidance for ICBs here.
British Medical Association (BMA) guidance on decisions relating to CPR 2021
This guidance, produced jointly with the Resuscitation Council (UK) and the Royal College of Nursing explains the factors you need to think about when making decisions about cardiopulmonary resuscitation. Read the guidance here.
NHS England specialist palliative and end of life care services: adult service specification 2023
This service specification outlines the aims and objectives of specialist palliative and end of life care service delivery. Read the service specification here.
Wales
Last Days of Life Guidance 2021
The Leadership Alliance for the Care of Dying People is a collaboration with NHS England, but the same priorities apply in Wales as they have informed the All Wales Care Decisions Last Days of Life Guidance . A Welsh language version is also available.
This evidence-based good practice is regulary reviewed by experts in Wales and provides care decisions guidance for health boards and trusts. In 2021, Marie Curie was able to contribute to a new appendix which offers best practice advice for ensuring diversity and inclusion is respected at the end of life.
NICE guidelines and quality standards
The Welsh Government has endorsed these NICE guidelines and quality standards:
- The NICE guideline [NG31] Care of dying adults in the last days of life 2015
- The NICE guideline [NG142] End of life care for adults: service delivery 2019
- The NICE guideline [NG197] Shared decision making 2021
- The NICE quality standard [QS144] Assessing signs and symptoms 2017
- The NICE quality standard [QS13] End of life care for adults 2021
Scotland
NHS Scotland published their guideline Caring for people in the last day and hours of life in December 2014. It advises professionals to follow four key principles of care:
- Informative, timely and sensitive communication is an essential component of each individual person's care.
- Significant decisions about a person's care, including diagnosing dying, are made on the basis of multi-disciplinary discussion.
- Each individual person's physical, psychological, social and spiritual needs are recognised and addressed as far as possible.
- Consideration is given to the wellbeing of relatives or carers attending the person.
Read more information on caring for someone in their last days and hours of life.
Scottish Palliative Care Guidelines 2019
These guidelines are delivered through the Right Decision Service – the national decision support service provided by Health Improvement Scotland. They provide practical, evidence-based or best-practice guidance on a range of common clinical issues. Read the guidelines here.
Download an app version of the guidelines:
My Health, My Care, My Home - healthcare framework for adults living in care homes 2022
This framework provides recommendations for providing high quality personalised care that is consistent, safe and meaningful. Read the full framework here.
Palliative and end of life care: strategic framework for action 2015
This framework supports improvements in the delivery of palliative and end of life care across Scotland. It includes objectives and commitments of the Scottish government. Read the full framework here.
Northern Ireland
Living Matters, Dying Matters: A Palliaitve and End of Life Care Strategy for Adults in Northern Ireland 2010
This report published in 2010 includes eight principles for quality palliative care . These state that good palliative care, which may be applicable from diagnosis:
- affirms life and regards dying as a normal process
- intends to neither hasten nor to postpone death
- provides relief from pain and other distressing symptoms
- integrates the psychological, emotional and spiritual aspects of patient care
- offers a support system to help patients live as actively as possible until death
- offers a support system to help the family cope during the patient's illness illness and into bereavement
- uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated
- will enhance quality of ife and may also positively influence the course of illness.
NICE guidelines
The Department for Health in Northern Ireland has endorsed the NICE guideline [NG31] Care of dying adults in the last days of life [NG197] Shared decision making and [NG142] End of life care for adults service delivery.
Northern Ireland does not currently endorse NICE quality standards.
Guidance on managing symptoms in the last days of life 2023
Northern Ireland has also produced clinical guidance on managing symptoms in the last days of life. Read the full guidance here.
Guidelines for palliative and end of life care in nursing homes and residential care homes 2013
In 2013 the Guidelines and Audit Implementation Network published Guidelines for Palliative and End of Life Care in Nursing Homes and Residential Care Homes in Northern Ireland.
The guidelines cover the following areas in relation to the provision of palliative and end of life care for patients in these settings:
- identification of the stage of the illness
- palliative care holistic assessment
- advance care planning and co-ordination of care across are boundaries
- end of life care
- care after death and bereavement
- staff support, training and development.
Useful resources
Scottish Partnership for Palliative Care
All Ireland Institute for Palliative Care: The Palliative Hub
The Daffodil Standards is a free, evidence-based, structured approach to help GP practices consistently offer the best end of life care for patients.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
