End-of-Life Care and Post Death Resources
The information and links to third party resources on this page are provided for training and education purposes only. Advice from a suitably qualified and experienced lawyer should be sought in relation to individual cases.
Guidance
The National Institute for Health and Care Excellence (NICE) have produced six guidance documents related to end-of-life care which apply in England and Wales.
From the above link you can access the NICE guidance which covers the following in England:
- End-of-life care for adults: Service Delivery (2019);
- End-of-life care for infants, children & young people with life-limiting conditions: planning and management (2016)*;
- Palliative care for adults: strong opioids for pain relief (2012);
- Care of dying adults in the last days of life (2015);
- Methylnaltrexone for treating opioid-induced bowel disfunction in people with advanced illness receiving palliative care (2013);
- Improving supportive & palliative care for adults with cancer (2004).
You can also use the above link to access the following NICE Quality Standards related to end-of-life care:
- End-of-life care for infants, children & young people (2017)*1;
- End-of-life for adults (2011, updated 2017);
- Care of dying adults in the last days of life (2017).
The Scottish Intercollegiate Guidelines Network (SIGN) have published the following guidance for Scotland:
NHS England: Learning from Deaths (2018)
Guidance for NHS Trusts on working with bereaved families and carers.
NHS Guidance for Staff Responsible for Care after Death (last offices)
This guidance was published by the National End of Life Care programme in partnership with the National Palliative Care Nurse Consultant Group. The publication aims to highlight the wide-ranging and sensitive care nurses and their colleagues should undertake when an adult dies.
Royal College of Paediatrics and Child Health ‘ Making decisions to limit treatment in life-limiting and life-threatening conditions in children: A framework for practice.
Guidance published by the Royal College of Paediatrics and Child Health’s Law and Ethics Advisory committee on make end-of-life decisions for children.
UK Government Guide to Coroner Services for bereaved people(last updated 2020) This guide explains about the role of a coroner and the purpose and conduct of inquests. Applies to England and Wales.
Crown Office & Procurator Fiscal Service Family Liaison Charter
This charter sets out bereaved families access to information and liaison with the Procurator Fiscal in Scotland.
Crown Office & Procurator Fiscal Service Role in Investigating Deaths (Scotland)
The Crown Prosecution Service guide to Coroners for prosecutors (England and Wales)
Statutes
The Coroners and Justices Act 2009 (England and Wales)
Inquiries into Fatal Accidents and Sudden Deaths etc (Scotland) Act 2016 (Scotland)
Statutory Instrument
The Coroner’s (Inquest )Rules 2013 (England and Wales)
Statutory Guidance
Multi-agency Statutory Guidance for the Conduct of Domestic Homicide Reviews (2016) This is statutory guidance issued by the Home Office under section 9(3) of the Domestic Violence, Crime and Victims Act 2004 a ‘domestic homicide’ in circumstances where the death or a person aged 16 or over has, or appears to have, resulted from violence, abuse or neglect by a person to whom he or she was related or with whom he or she was or had been in an intermate personal relationship or a member of the same household as the deceased. The guidance applies to England, Wales and Northern Ireland.
Child Death Review: statutory and operational guidance (England)(2018)*2
This guidance for all professionals working with children, sets out the processes which should be followed in England following the death of a child. One of its aims was to improve the experience of bereaved families. The Department of Health and Social Care introduced new forms for the reporting on child deaths on 1st April 2021.
Support and advice Organisations
Organisations listed in UK Government Guide to Coroner Services for bereaved people
AAFDA (Advocacy After Fatal Domestic Abuse) AAFDA is a national charity specialising in free peer led expert and specialist support and advocacy after domestic homicides. AAFDA provides free lay advocacy for preparation for, and representation at inquests.
Bereavement Advice Service Free helpline and web based information service provided by Co-op Legal Services. Providing practical advice and information on the issues and procedures after a death.
Brake Brake is a provider of support services to people who have been bereaved or seriously injured in a road crash, as well as the family, friends and professionals supporting them.
37Office of the Chief Coroner Website providing information and responsibilities of the Chief Coroner for England and Wales. It also contains a range of published material including guidance on specific issues.
Child Death Helpline A dedicated helpline that offers support to anyone affected by the death of a child of any age, under any circumstances however recent or long ago.
Citizens Advice Provide free and confidential advice and information whoever you are and whatever your problem.
The Compassionate Friends A charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members who have suffered the death of a child or children of any age and from any cause.
The Coroners’ Courts Support Service (CCSS) An independent voluntary organisation whose trained volunteers offer emotional support and practical help to bereaved families, witnesses and others attending an inquest at a coroner’s court.
Additional Support and advice organisations
Action against Medical Accidents This charity registered in England & Wales and Scotland, purpose is support people affected by avoidable harm in healthcare; to help them achieve justice and to promote better patient safety for all.
Inquest Inquest provides expertise on state related deaths and their investigation to bereaved people, lawyers, advice and support agencies, the media and parliamentarians. Their specialist casework includes deaths in police and prison custody, immigration detention, mental health settings and deaths involving multi-agency failings or where there are wider issues of state and corporate accountability.
Making Families Count (MFC) began in 2015 as an NHS pilot project and in 2019 became an independent Community Interest Company (C.I.C.). MFC believes in the transformative power of positive family engagement throughout health and social care services, leading to improved outcomes for families affected by serious harm and traumatic bereavements.
MFC is made up of a group of people who are recognised experts in their fields. Some have suffered the loss of a family member through traumatic and complex bereavement. Others are highly experienced, senior NHS investigators. Making Families Count are a training organisation and run training events including webinars for healthcare providers in all aspects of learning and improving healthcare investigations, leading to patients and families becoming integral to health and social care investigations, leading to better investigations, better learning, safer services and the right support for families. They also run webinars for patients, families and carers, also developing understanding of how to achieve better outcomes during care and investigations.
UK Sepsis Trust
The UK Sepsis Trust provide resources, help and support for practitioners and the public about sepsis to the aim of prevent avoidable deaths.
Support and advice for staff
Support Around Death, Scotland
This is the NHS Education for Scotland website which provides support to health and care staff working with patients, carers and families before, after and at death. It provides clinical, legislative and practical information.
NHS Resolution
From this link NHS staff can access multiple links to information and support for staff.
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*AdsFoundation director Dr Zoe Picton-Howell served on the NICE guidance committee which wrote this guidance.
*1 AdsFoundation director Dr Zoe Picton-Howell served on the NICE guidance committee which wrote this Quality Standard.
*2 AdsFoundation director Dr Zoe Picton-Howell was a co-author of this statutory and operational guidance.
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