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
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