Professional resources
Resources to support end of life care
The RCN believes that end of life care is not just the responsibility of specialist nurses and teams, rather that everyone should be able to care for a loved one as they reach the end of their lives, including all nurses and health care support workers in all settings, the patient’s family as well as members of the community.
Everyone has the right to be cared for with dignity and respect as they approach the end of their lives.
RCN resources
Assistance with dying
When someone asks for your assistance to die. RCN guidance on responding to a request to hasten death (2016) This guidance from the RCN was developed to support nurses, HCAs, and other health professionals in adult practice who may be asked by patients, or their families or carers, to become involved in assisting suicide. It covers the law on assisted suicide in the UK, as well as the law on advance decisions. (Please note, this publication is under review and some content may not be current.)
RCN position statement on assisted dying (2023) This position statement sets out the RCN's neutral position with regard to assisted dying for people with a terminal illness, which has been held since 2009.
Adult Safeguarding: Roles and Competencies for Health Care Staff. One of the most important principles of safeguarding is that it is everyone’s responsibility. Health care staff frequently work with people in their moments of greatest need and can witness health and social inequalities which have a direct impact on the lives of people they care for. This intercollegiate document has been designed to guide professionals and the teams they work with to identify the competencies they need in order to support individuals to receive personalised and culturally sensitive safeguarding. It sets out minimum training requirements along with education and training principles.
End of life care resources
NICE guidance
NICE (2021) End of life care for adults. This quality standard covers care for adults (aged 18 and over) who are approaching the end of their life. This includes people who are likely to die within 12 months, people with advanced, progressive, incurable conditions and people with life-threatening acute conditions. It also covers support for their families and carers.
NICE (2019) End of life care for adults: service delivery. This guideline covers organising and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers.
NICE (2019) End of life care for infants, children and young people with life-limiting conditions: planning and management. This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions.
NICE (2015) Care of dying adults in the last days of life. This guideline covers the clinical care of adults (18 years and over) who are dying during the last 2 to 3 days of life. It aims to improve end of life care for people in their last days of life by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity.
England
Coordinate My Care (CMC). CMC works to empower patients to have choices about the care they receive and to make those choices known to those who care for them.
Department of Health and Social Care. Palliative and end of life care collection. Information and resources for health and social care professionals to improve the quality of services and reduce inequalities in care.
Dying Matters is a coalition of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
Gov.uk. Mental Capacity Act 2005 (England and Wales.
Institute for Public Policy Research. End of life care in England (PDF). This briefing paper provides a brief summary of issues around end of life care, including an overview of evidence regarding the impact of location on the quality and cost of care.
National Palliative and End of Life Care Partnership. Ambitions for palliative and end of care life (2021) (PDF). This framework sets out the vision to improve end of life care through partnership and collaborative action between organisations at local level throughout England.
NHS England. End of life care. Resources to support palliative and end of life care.
NHS England. My future wishes (PDF). Advance Care Planning (ACP) for people with dementia in all care settings.
Public Health England. Palliative and end of life care profiles: November 2019 data update. The profiles provide an overview of palliative and end of life care in England at various geographies.
Scotland
Carers UK, Scotland. Expert advice, information and support for carers in Scotland.
Good life, good death, good grief. This website brings together people and organisations that are interested in improving people’s experiences of death, dying and bereavement in Scotland.
NHS Scotland. Scottish Palliative Care Guidelines - end of life care. Resources to support palliative and end of life care.
Scottish Government. Death and end of life. Resources to support palliative and end of life care.
Scottish Government. Shaping Bereavement Care - a framework for action (2011) (PDF).
Scottish Government. National dementia strategy: 2017-2020. This strategy builds on progress over the last decade in transforming services and improving outcomes for people affected by dementia.
Scottish Government. Adults with Incapacity (Scotland) Act 2000. This legislation provides a framework for safeguarding the welfare and managing the finances of adults who lack capacity due to mental disorder or inability to communicate.
Scottish Palliative Care Guidelines. The Scottish Palliative Care Guidelines reflect a consensus of opinion about good practice in the management of adult patients with life limiting illness. They are designed for healthcare professionals from any care setting who are involved in supporting people with a palliative life-limiting condition.
Support Around Death. End of life care. This website aims to support the education and training needs of those who work with the bereaved in Scotland.
Supportive & Palliative Care Indicators Tool (SPICT). The SPICT is used to help us identify people at risk of deteriorating and dying with one or multiple advanced conditions for holistic, palliative care needs assessment and care planning.
Northern Ireland
Alzheimer's Society. Dementia Strategy for Northern Ireland. National campaigns and programmes.
Dementia NI. This organisation provides a voice for people who are living with a diagnosis of dementia and to reach out to others who have dementia.
Department of Health. A Strategy for Children's palliative and End of life Care (2016-26). This document sets out the strategic direction for the palliative and end-of-life care of ill and dying children and young people in the North for the next ten years.
HSC Public Health Agency. Palliative and End of Life Care Programme. The Northern Ireland-wide Transforming your palliative and end of life care programme aims to design and support the delivery of co-ordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives.
Marie Curie - Northern Ireland. Marie Curie is the largest charitable provider of end of life care in Northern Ireland.
nidirect. End of life care and palliative care. Resources to support palliative and end of life care.
Wales
Marie Curie - Wales. Marie Curie services in Wales.
National Palliative and End of Life Care. National Palliative and End of Life Care Programme.
Welsh Government. End of life care. Resources to support palliative and end of life care.
Welsh Government. End of life care delivery plan (2017). This plan covers all aspects of palliative and end of life care, delivered by both primary and secondary care, and also involves specialist palliative care services delivered by the NHS or third sector providers.
Welsh Government. Dementia. Policies, plans, reports, standards and guidance on dementia.
Further resources
Dying Matters. Caring for people with a learning disability.
Essex Chambers. R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors.
Gold Standards Framework. The National Gold Standards Framework (GSF) Centre in End of Life Care is the national training and coordinating centre for all GSF programmes, enabling generalist frontline staff to provide a gold standard of care for people nearing the end of life.
Macmillan- Initiatives in end of life care. Macmillan advocates the government and NHS for better support to enable people to die in the place and manner of their choosing, in as little pain and with as much dignity as possible. See also: free, easy read books on end of life and bereavement.
Marie Curie. Caring for someone with a terminal illness.
Marie Curie. Planning your care in advance - advance care planning.
Marie Curie - caring for LGBTQ+ people at the end of life. Regardless of sexual orientation, gender, relationship or family status, everyone’s needs and preferences at the end of life will be unique.
National Council for Palliative Care (NCPC). The NCPC is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
Palliative Care for People with Learning Disabilities (PCPLD). The PCPLD Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs.
Skills for Care. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR). Respecting and protecting the rights and wishes of people.
RCN learning path for healthcare support workers
A new learning path for healthcare support workers, is now available on e-ELCA. The aim of this learning path is to provide healthcare support workers with a greater understanding and confidence when working with individuals near the end of life and to offer support for their families. It’s relevant to all settings including care homes and domiciliary care. Sessions in this path have public access, meaning they can be accessed by logging in with any email address.
Page last updated - 09/08/2023
