Conditions

Includes policy, guidance and intelligence on end of life care for different conditions.

General

Office for Health Improvements and Disparities (ONS) (2023) Palliative and end of life care factsheets: patterns of care, England 2021

Cancer

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

Cardiovascular disease

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 (2016) End of life care in heart failure. A framework for implementation

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[ENd7] 

Public Health England (2019) Cardiovascular disease data and analysis: guide for health professionals[ENd8] [ENd9] 

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

COVID-19

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[ENd12] [ENd13] 

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)

Dementia

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

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

Social care institute for excellence (SCIE) End-of-life care and dementia: An introduction

Diabetes

Diabetes UK (2021) End of life guidance for diabetes care

Marie Curie Caring for someone with diabetes towards the end of life

Office for Health Improvements and Disparities Diabetes

Frailty

British Geriatrics Society End of Life Care in Frailty

Hospice UK Extending Care Programme

NHS RightCare (2019) Frailty Toolkit

Kidney disease

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

Liver disease

British Society of Gastroenterology (2014) BASL decompensated cirrhosis care bundle - first 24 hours

British Society of Gastroenterology (2022) End of life care in advanced chronic LiVEr disease (EVOLVE)

Public Health England 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

Mental Health

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[ENd16] 

Multi-morbidity

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]

Musculoskeletal

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

Neurological disease

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

Respiratory disease

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 Inhale - INteractive Health Atlas of Lung conditions in England

Public Health England (2019) The 2nd Atlas of variation in risk factors and healthcare for respiratory disease

Contact us 

Send feedback and questions to neolcin@dhsc.gov.uk