Professional resources

End of life care resources

NICE guidance

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 (2017) 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.

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. 

Further resources

British Institute of Human Rights. Nursing, Midwifery and End of Life Care. This guide has been written in partnership with the RCN. The aim of the guide is to support nurses and provide them with practical asisstance when navigating difficult decisions which may affect a person's human rights

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.

Marie Curie. Caring for someone with a terminal illness.

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. 

NHS Employers. End of life care. This source aims to support and encourage organisations to invest in the education and training of staff in order to ensure that the best end-of-life care is delivered to patients. 

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. 

Dying Matters. End of life care for adults with a learning disability. As a GP, would you recognise when an adult with a learning disability is approaching the end of life? A ground-breaking pathway in Nottinghamshire is helping GPs and associated health care professionals do just that while transforming the end of life care experiences of people with a learning disability.

NHS England. Leadership Alliance for the Care of Dying People (LACDP) (2014). The LACP has published a new approach to caring for people in the last few days and hours of life, that focuses on the needs and wishes of the dying person and those closest to them, in both the planning and delivery of care wherever that may be.

National Palliative and End of Life Care Partnership. Ambitions for palliative and end of care life (2015). This framework sets out the vision to improve end of life care through partnership and collaborative action between organisations at local level throughout England. 

Scotland

Scottish Government. Shaping Bereavement Care - a framework for action (2011). 

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.

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

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.

Wales

Palliative Care Wales. This site is part of the Palliative Care Matters network of sites. It is aimed at health-care professionals working in the palliative care field.

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. 

Marie Curie - Wales. Marie Curie services in Wales.

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 updated 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.

RCN position statement on assisted dying (2014) 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.

Page last updated - 04/11/2019