This directory of intelligence and guidance supports the data in the profile, arranged by themes:
This information is updated quarterly.
The National End of Life Care Intelligence Network (NEoLCIN) is not responsible for the contents or reliability of these links and does not necessarily endorse the content expressed within them. For enquiries or feedback relating to the palliative and end of life care pages, email neolcin@dhsc.gov.uk
Age UK (2019) Policy Position Paper. End of life care (England)
Association of Chartered Physiotherapists in Oncology in Palliative Care (2022) Universal principles for advance care planning (ACP)
Care Quality Commission (2023) State of care 20222/23
Department for Levelling Up, Housing and Communities (2020) Public health funerals: good practice guidance
Department of Health and Social Care (2008) End of life care strategy: promoting high quality care for adults at the end of their life
Department of Health and Social Care (2015) Improvements to care in the last days and hours of life
Department of Health and Social Care (2018) NHS continuing healthcare fast-track pathway tool
Department of Health and Social Care (2015) One chance to get it right: one year on report
Department of Health and Social Care (2016) Our commitment to you for end of life care: The government response to the review of choice in end of life care
Department of Health and Social Care (2023) Major conditions strategy: case for change and our strategic framework
Department for Works and Pensions (2023) Special rules for end of life care: healthcare professionals resources
General Medical Council (2022) Treatment and care towards the end of life: Good practice in decision making
Hospice UK (2022) Care after death. Guide for staff responsible for care after death
Hospice UK Rehabilitative palliative care
Hospice UK Where to get bereavement support
Institute for Public Policy Research (2021) The state of end of life care: Building back better after Covid-19
King’s Health Partners (2018) Palliative Care Clinical Academic Group outcomes book
National Bereavement Alliance and Hospice UK (2019) Care after caring
NHS (2019) The NHS Long term plan
NHS Digital (2015) Palliative care co-ordination: core content (SCCI1580)
NHS England Palliative and end of life care
NHS England Personal health budgets for palliative and end of life care
NHS England (2016) New care models: vanguards – developing a blueprint for the future of NHS and care services
NHS England (2017) Palliative care currency
NHS England (2019) Universal personalised care: Implementing the comprehensive model
NHS England (2022) Palliative and end of life care: Statutory guidance for integrated care boards (ICBs)
NHS England (2022) Universal principles for advance care planning (ACP)
NHS England & NHS Improving Quality (2014) NHS England's commitment for carers
NHS England (2023) Specialist palliative and end of life care services: Adult specification
NHS Improving Quality (2014) Lessons learned implementing an Electronic Palliative Care Co-ordination System (EPaCCS)
National Institute for Health and Care Excellence (2017) Care of dying adults in the last days of life [QS144]
National Institute for Health and Care Excellence (2019) End of life care for adults in the last year of life: service delivery [NG142]
National Institute for Health and Care Excellence (NICE) (2019) End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61)
National Palliative and End of Life Care Partnership (2021) Ambitions for palliative and end of life: A national framework for local action 2021-2026
Parliamentary and Health Service Ombudsman (2015) Dying without dignity. Investigations by the parliamentary and health service ombudsman into complaints about end of life care
Public Health England, National End of Life Care Intelligence Network (2016) Electronic Palliative Care Co-ordination Systems (EPaCCS) national data project
Public Health England, National End of Life Care Intelligence Network & NHS Improving Quality (2014) Electronic Palliative Care Co-ordination Systems (EPaCCS) in England
Royal College of General Practitioners and Marie Curie UK The Daffodil Standards
The Choice in End of Life Care Programme Board (2015) What’s important to me. A review of choice in end of life care
The Leadership Alliance for the Care of Dying People (2014) One chance to get it right - improving people’s experience of care in the last few days and hours of life (Liverpool Care Pathway Review)
Includes policy and guidance on different care settings for palliative and end of life care: care homes, communities, hospice, hospital and social care.
Marie Curie Palliative Care Research Centre, Cardiff University, Hospice UK and Public Health England (2017) Results of a national survey of support to adult care homes in England: A specialist palliative care provider perspective
NHS (2016) The framework for enhanced health in care homes
Public Health England, National End of Life Care Intelligence Network (2017) The role of care homes in end of life care
Office for National Statistics Care homes and estimating the self-funding population, England: 2021-2022
General Medical Council Treatment and care towards the end of life: good practice in decision making
Local Government Association (2020) End of Life care Guide for councils
Marie Curie Compassionate communities. A civic and public health approach to end of life care
Murray Hall Community Trust and The National Council for Palliative Care Dying Matters (2013) An overview of compassionate communities in England
NIHR Compassionate Communities: A public health approach to palliative and end of life care - PEOLC13
The National Council for Palliative Care (2016) Each community is prepared to help: community development in end of life care – guidance on ambition six
CQC (2018) The state of hospice services in England 2014 to 2017
Hospice UK Publications and Resources
NHS England (2017) Dementia friendly hospices – embedding a sustainable model to develop the skills, knowledge and confidence of Hospice staff across Yorkshire and the Humber
Nuffield Trust and Hospice UK (2022) Support at the end of life. The role of hospice services across the UK
NHS England (2015) Transforming end of life care in acute hospitals: the route to success ‘how to’ guide
Royal College of Physicians (2016) End of life care audit – dying in hospital
Marie Curie (2022) Better end of life care 2022
Macmillan Cancer Support (2020) Supporting QI activity in end of life care
Association of Palliative Care Social Workers (2016) The role of social workers in palliative, end of life and bereavement care
British Association of Social Workers (BASW) The role of social workers in palliative, end of life care and bereavement care
Care Quality Commission (2018) The state of adult social care services 2014 to 2017
Includes policy, guidance and intelligence on end of life care for different conditions.
Office for Health Improvements and Disparities (ONS) (2023) Palliative and end of life care factsheets: patterns of care, England 2021
Cancer Research UK Cancer mortality statistics
Cancer Research UK Dying with cancer
Independent Cancer Taskforce (2015) Achieving world-class cancer outcomes. A strategy for England 2015-2020
National Cancer Registration and Analysis Service (2015) Older people and cancer report
National End of Life Care Intelligence Network & National End of Life Care Programme (2012) Deaths from urological cancers in England, 2001-10
National Institute for Health and Care Excellence (2004) Improving supportive and palliative care for adults with cancer [CSG4]
National LGBT Cancer Network LGBT Palliative care
NHS RightCare (2018) NHS RightCare scenario: The variation between sub-optimal and optimal pathways. Katie’s story: advanced colorectal cancer
Public Health England, National End of Life Care Intelligence Network (2014) Head and neck cancers in England: who dies from them and where do they die?
Transforming cancer services team for London (TCST), NHS National Cancer Registration and Analysis Service (NCRAS) & Public Health England (PHE) Hospital use and cancer treatment in last 90 days of life, London
British Heart Foundation (2014) Difficult conversations - talking to people with heart failure about the end of life
British Heart Foundation Heart Matters Wellbeing – End of life care
Department of Health and Social Care (2013) Improving cardiovascular disease outcomes: strategy
Hospice UK (2017) Heart failure and hospice care
Kings College London Sentinel Stroke National Audit Programme (SSNAP)
Marie Curie Caring for someone with heart failure towards the end of life
NHS England (2023) Addressing palliative and end of life care needs for people living with heart failure: a revised framework for integrated care systems
Office for Health Improvement & Disparities (OHID) Cardiovascular disease profiles
Public Health England, National Cardiovascular Intelligence Network Cardiovascular disease prevention
Public Health England (2019) Cardiovascular disease data and analysis: guide for health professionals
Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2013) Deaths from cardiovascular diseases: Implications for end of life care in England
Taskforce for Lung Health Right care in the last year of life
All-Party Parliamentary Group, Hospice UK and End of Life Care (2023) The lasting impact of COVID-19 on death, dying and bereavement
British Geriatrics Society (2020) COVID-19: End of life care in older people
GOV.UK Coronavirus (COVID-19) dashboard UK
Institute for Public Policy Research (2021) The state of end of life care: Building back better after Covid-19
Marie Curie (2022) Better End of Life July 2022 research reports
Office for Health Improvement & Disparities (OHID) Excess mortality in England: English regions
Office for Health Improvement & Disparities (OHID) Wider Impacts of COVID-19 on Health (WICH) monitoring tool
The Patients Association (2020) The Pandemic Patient Experience
UKHSA (202) Guidance for care of the deceased with suspected or confirmed coronavirus (COVID-19)
Alzheimer's Society, Alzheimer's Research UK and Marie Curie (2017) Caring for someone with dementia at the end of life
Alzheimer's Society (2021) End of life care. Factsheet 531LP
Alzheimer's Society How to know when a person with dementia is nearing their end of life
British Geriatrics Society (2020) End of life care in frailty: dementia
Dementia UK (2023) Recognising the later stages of dementia and moving towards end of life care
Department of Health and Social Care (2015) Prime Minister's challenge on dementia 2020
National End of Life Care Intelligence Network & National End of Life Care Programme (2010) Deaths from Alzheimer’s disease, dementia and senility in England
National Institute for Health and Care Excellence (2018) Dementia: assessment, management and support for people living with dementia and carers [NG97]
National Institute for Health and Care Excellence (2019) Dementia [QS184]
National Institute for Health and Care Excellence (2022) Scenario: management of end-stage dementia
NHS England (2018) My future wishes. Advance Care Planning (ACP) for people with dementia in all care settings
Public Health England, National Mental Health, Dementia and Neurology Intelligence Network (2016) Dementia data and analysis: a guide for health professionals
Office for Health Improvement & Disparities (OHID), National Mental Health, Dementia and Neurology Intelligence Network Dementia profile
Office for Health Improvement & Disparities (OHID) (2024) Dementia profile – 1. Surveillance factsheet
Public Health England, National Mental Health, Dementia and Neurology Intelligence Network and National End of Life Care Intelligence Network (2016) Dying with dementia. Data briefing
Diabetes UK (2021) End of life guidance for diabetes care
Marie Curie Caring for someone with diabetes towards the end of life
British Geriatrics Society End of Life Care in Frailty
Hospice UK Extending frailty care programme
NHS RightCare (2019) Frailty Toolkit
Marie Curie Caring for someone with kidney failure towards the end of life
National End of Life Care Intelligence Network & National End of Life Care Programme (2010) Deaths from renal diseases in England, 2001 to 2008
National Kidney Federation End of life care for renal patients
NHS Improvement (2017) End of life care in advanced kidney disease: a framework for implementation
NHS RightCare (2018) NHS RightCare scenario: The variation between sub-optimal and optimal pathways. Abdul’s story: Progressive chronic kidney disease
Office for Health Improvements and Disparities Diabetes
British Society of Gastroenterology (2014) BASL decompensated cirrhosis care bundle - first 24 hours
Office for Health Improvement & Disparities Liver disease profiles
Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2012) Deaths from liver disease: Implications for end of life care in England
Public Health England and NHS RightCare (2017) The 2nd Atlas of variation in risk factors and healthcare for liver disease in England
Marie Curie Inequities in palliative care – mental health
Marie Curie Mental capacity in palliative care
National Audit of Care at the End of Life (NACEL) Mental health summary audit report England and Wales (2021/22)
Office for Health Improvements & Disparities (2022) Premature mortality in adults with severe mental illness
The Lancet (2019) Palliative care for people with serious mental illness
What Works Wellbeing (2021) Dying well: wellbeing at the end of life
Office for National Statistics (ONS) (2022) Rolling annual deaths registration by place of occurrence, England ending quarter 1 (Apr-Jun) of financial year 2022 to 2023
National Institute for Health and Care Excellence (2016) Multimorbidity: clinical assessment and management [NG56]
Arthritis Research UK (2018) Musculoskeletal conditions and multi-morbidity
Lancashire County Council Musculoskeletal conditions
Public Health England (2017) Musculoskeletal conditions: return on investment tool
Versus Arthritis The state of musculoskeletal health 2021
Marie Curie Caring for someone with motor neurone disease towards the end of life
Marie Curie Caring for someone with multiple sclerosis towards the end of life
Marie Curie Caring for someone with Parkinson’s towards the end of life
Motor Neurone Disease Association Palliative and end of life care
NHS England NHS RightCare (2019) Progressive neurological conditions Toolkit
Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2010) Deaths from neurodegenerative diseases in England, 2002 to 2008
Public Health England, Neurology Intelligence Network and National End of Life Care Intelligence Network (2018) Deaths associated with neurological conditions
Marie Curie Caring for someone with a long-term lung condition
NHS England (2018) Improving access and coordination to palliative care for patients with end stage respiratory disease
Office for Health Improvement & Disparities Respiratory disease
Public Health England (2019) The 2nd Atlas of variation in risk factors and healthcare for respiratory disease
People from certain groups sometimes experience poorer quality care at the end of their lives. This section signposts policy and guidance which addresses these inequalities.
Age UK (2021) Breaking down the barriers of ethnic inequalities in health
BASW Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK
Care Quality Commission (CQC) (2016) People from black and ethnic minority communities. A different ending: addressing inequalities in end of life care
Public Health England, King’s College London, Marie Curie Cancer Care (2013) Palliative and end of life care for Black, Asian and Minority Ethnic groups in the UK Demographic profile and the current state of palliative and end of life care provision
Public Health England, National End of Life Care Intelligence Network (2017) Place of death by ethnic group for people who died from cancer, England 2008 to 2017
Race Equality Foundation (2018) Dementia and end of life care for black, asian and minority ethnic communitiesAll-Party Parliamentary Group for Terminal Illness (2021) No place like home
Marie Curie (2021) Inequalities in palliative care - Deprivation
Care Quality Commission (CQC) and Faculty for Homeless and Inclusion Health (2017) A second class ending. Exploring the barriers and championing outstanding end of life care for people who are homeless
Frontline Network St Mungo’s How to support individuals and end of life care needs
Government Statistical Service UK official statistics on homelessness: Comparisons, definitions, and processes
Hospice UK (2018) Care committed to me
Office for National Statistics (2022) Deaths of homeless people in England and Wales
St Ann’s Hospice Homelessness and palliative care – the film
St Ann’s Hospice Homelessness and palliative care: how can we improve equity of care?
St Mungos & Marie Curie Cancer Care (2017) Homelessness and end of life care. Practical information and tools to support the needs of homeless people who are approaching the end of life and those who are bereaved
The University of Sheffield and Crisis (2012) Homelessness kills: An Analysis of the mortality of people in early twenty-first century England
Prisoners
Ambitions for Palliative and End of Life Care Partnership (2018) Dying well in custody charter. A national framework for local action
Centre for Policy on Ageing (2016) Diversity in older age – Older offenders
Hospice UK (2021) Dying behind bars. How can we better support people in prison at the end of life?
Nuffield Trust (2021) Injustice? Towards a better understanding of health care access challenges for prisoners
Nuffield Trust (2023) Living (and dying) as an older person in prison
Public Health England (2017) Health and social care needs assessments of the older prison population. A guidance document
NHS England & Palliative care for people with learning disabilities network (2017) Delivering high quality end of life care for people who have a learning disability
NHS England National end of life care programme: The route to success in end of life care - achieving quality for people with learning disabilities
PCPLD Network and NHS England (2017) Delivering high quality end of life care for people who have a learning disability. Resources and tips for commissioners, service providers and health and social care staff
PCPLD Network Resources
Hospice UK Providing palliative and end of life care to trans and gender diverse communities
LGBT Foundation Creating space for LGBTQ+ people to talk about end of life care
Marie Curie (2016) “Hiding who I am” The reality of end of life care for LGBT people
Marie Curie Palliative and end of life care for LGBTQ+ people
Care Quality Commission (2016) A different ending: end of life care review
Hospice UK Promoting equality in end of life care
Macmillan Cancer Support (2017) The final injustice: Variations in end of life care in England
Manchester Metropolitan University and Community Fund (2019) Good Practice Guidance. Supporting people with substance abuse problems at end of life
Manchester Metropolitan University (2019) Palliative end of life care for people with alcohol and drug problems
Marie Curie (2020) A place for everyone. What stops people from choosing where to die?
NHS England Addressing inequalities in end of life care
Office for National Statistics (ONS) (2023) Inequalities in mortality involving common physical health conditions, England: 21 March 2021 to 31 January 2023
UK Parliament POST Palliative and end of life care
Guidance to support the commissioning of local palliative and end of life care services.
Gold Standards Framework (2015) The Gold Standards Framework
Local Government Association and ADASS (2020) End of life care. Guide for councils
Marie Curie Commissioning our services
NHS England NHS Oversight framework and assessment
NHS England (2014) Commissioning for carers
NHS England (2017) Palliative care currency
NHS England Personal health budgets in end of life care
NHS England Resources for commissioners
NHS England (2016) Specialist level palliative care: Information for commissioners
Public Health England (2017) End of life care economic tool
Royal College of General Practitioners (2013) Commissioning guidance in end of life care
The King’s Fund (2023) Dying well at home: commissioning quality end-of-life care
A list of other intelligence products such as reports, data sources and interactive tools which may be of interest to people working in palliative and end of life care.
COVID Bereavement Bereavement during COVID-19: A national study of bereaved people’s experiences and the impact on bereavement services
Department for Work and Pensions (2022) Bereavement Support Payment Statistics: background information and methodology
European Association for Palliative Care (EAPC) Bereavement care provision in palliative care – a European descriptive and consensus-building exercise
Association for Palliative Medicine (APM) (2019) Report and overview of the palliative medicine workforce in the United Kingdom
Hospice UK (2019) Results from an analysis of hospice community volunteering
NHS Digital (2020) General Practice workforce interactive dashboard
NHS Digital NHS workforce statistics
Skills for Care Data and publications
Age UK (2020) Parliamentary Briefing Social Care Reform
Age UK (2015) Briefing: the health and care of older people in England
Carers UK Key facts and figures about caring
Carers UK Facts about carers
Carers UK (2019) State of caring: a snapshot of unpaid care in the UK
Department for Work and Pensions (2022) The Family Resources Survey: financial year 2020-21
Hospice UK Current state of caring for family carers in UK hospices
NHS Digital (2019) Personal Social Services Survey of Adult Carers in England 2021-22
Office for Health Improvement & Disparities (2022) National GP Profiles (unpaid carers)
Office for National Statistics (2022) Population explorer: age, health and unpaid care
Office for National Statistics (2017) Unpaid carers provide social care worth £57 billion
The Health Foundation (2023) Understanding carers and their access to support
Ministry of Justice (2021) Coroners statistics 2020: England and Wales
Public Health England End of life care economic tool
Nuffield Trust (2014) Exploring the cost of care at the end of life
Sue Ryder (2021) Modelling demand and costs for palliative and end of life care services. A final report for Sue Ryder
Royal London (2020) The impact of Covid-19 on funerals. National Funeral Cost Index Report 2020
Sunlife (2024) Cost of Dying. 2024 Report
Care Quality Commission (2022) Local authority area data profiles
Gold Standards Framework (2009) End of life care in primary care: 2009 national snapshot
Hospice UK Introducing PopNAT 2.0
Hospice UK Innovation Hub
Institute for Public Policy Research (2018) End of life care in England, a briefing paper
National Institute for Health and Care Research (NIHR) (2022) Teamwork and proactive healthcare could help people with severe mental illness receive good end-of-life
NHS Digital Social care collections 2021
NHS England (2019) NHS continuing healthcare and NHS-funded nursing care
NHS England Resources for long term conditions
NHS RightCare RightCare resources
OECD (2023) Time for better care at the end of life
Office for Health Improvement & Disparities Musculoskeletal health: local profiles
Office for Health Improvement & Disparities (2024) Palliative and end of life care factsheet: Patterns of care, England 2022
Office for National Statistics (2015) National Survey of Bereaved People (VOICES): England
Public Health England (2019) Classification of place of death
Public Health England (2017) Health profile for England
Public Health England, National End of Life Care Intelligence Network (2019) Death in people aged 75 years and older in England 2017
Public Health England, National End of Life Care Intelligence Network (2020) Emergency admissions in the 3 months before death
Public Health England, National End of Life Care Intelligence Network (2017) End of life care data to inform Sustainability and Transformation Partnerships (STPs): updated tool and metadata guide
Public Health England, National End of Life Care Intelligence Network & NHS England (2016) Evaluation of palliative care clinical data set
Public Health England, National End of Life Care Intelligence Network (2019) Older people who died in hospital: England 2017
Public Health England, national end of life care intelligence network (2019) Palliative and end of life care: hospital deaths 2006 to 2017
Public Health England, National End of Life Care Intelligence Network (2020) Older people’s hospital admissions in the last year of life
Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2011) External causes of death
Public Health England, National End of Life Care Intelligence Network & National End of Life Care Programme (2011) Predicting death: estimating the proportion of deaths that are 'unexpected'
Public Health England & NHS RightCare (2018) Atlas of variation for palliative and end of life care in England
The King’s Fund (2014) Making our health and care systems fit for an ageing population
Versus Arthritis Data and Statistics
Links to training resources designed to improve the quality of palliative and end of life care services.
Gold Standards Framework Advance care planning
Marie Curie Advance care planning for healthcare professionals
National Institute for Health and Care Excellence (NICE) Advance care planning. A quick guide for registered managers of care home and home care services
Hospice UK Grief support during COVID-19
Hospice UK Bereavement project resources toolkit
Grey Matter Learning Motor neurone disease online care course
Macmillan Cancer Support Palliative and end of life care support for health professionals
Social Care Institute for Excellence (SCIE) Dementia awareness e-learning course (free course; requires registration)
UK Parkinson’s Excellence Network Understanding Parkinson’s for health and social care staff – online (excellence network) (free course)
Better Conversation Better Health Resources for a better conversation
Cultivating Compassion The Toolkit
Derbyshire Alliance for End of Life Care Derbyshire Alliance for End of Life Care Toolkit
Derby Teaching Hospitals NHS Foundation Trust The AMBER care bundle
Difficult Conversations Training for health and social care professionals
Gold Standards Framework Training Programmes
Grey Matter Learning End of life care online training course
Healthcare Conferences UK Conferences and masterclasses. Palliative and end of life care training
Health Education England End of life care for all – e-Learning to enhance education and training for end of life care
Hospice UK (2015) Care after death
Hospice UK What we offer: Courses, conferences and learning events
Marie Curie Learn and develop (login required)
Marie Curie Palliative care knowledge zone
Public Health England (2016) Faith at end of life: public health approach resource for professionals
Royal College of General Practitioners End of life and palliative care toolkit
Royal College of Nursing End of life care and wellbeing for the nursing and midwifery workforce
Skills for Care End of life care
Southern Derbyshire Clinical Commissioning Group Care home companion
The Royal College of Emergency Medicine (2020) The RCEM end of life care toolkit
UK Council for Clinical Communication E-learning (login required)
Marie Curie Caring for people experiencing homelessness in palliative care
National Institute for Health and Care Research (NIHR) (2022) End of life care: research highlights the importance of conversations and need for equal access
Pathway Homeless palliative care toolkit
