Palliative and EoLC Index of information
Contains articles, research, documents, blogs and useful websites
Strategic resources
Statistics
National End of Life Care Intelligence Network (NEoLCIN). Palliative and End of Life Care Profiles – Palliative and End of Life Care Profiles | Fingertips | Department of Health and Social Care
National frameworks, policies and reports in the UK
England and Wales
Care Act, 2014. (legislation.gov.uk) https://www.legislation.gov.uk/ukpga/2014/23/pdfs/ukpga_20140023_en.pdf
Department of Health and Social Care National End of Life Strategy, 2008. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life
Francis, R., 2013. Report of the Mid Staffordshire NHS Foundation Trust public inquiry: Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry – GOV.UK
GOS, 2016. The future of an ageing population. Government Office of Science: London. Future of an Ageing Population
LACDP, 2014. One chance to get it right. London: Leadership Alliance for the Care of Dying People. One Chance to get it right
Mental Capacity Act, 2005. https://www.legislation.gov.uk/ukpga/2005/9/contents
National Palliative and End of Life Care Partnership (NPEoLCP), 2015. Ambitions for palliative and end of life care: A national framework for local action 2015–2020. NHS England: London. ambitions-for-palliative-and-end-of-life-care-2nd-edition.pdf
National Palliative and End of Life Care Partnership (NPEoLCP), 2021. Ambitions for palliative and end of life care: A national framework for local action 2021–2026. NHS England: London. NHS England » Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026
Neuberger, J., Guthrie, C. and Aaronovitch, D., 2013. More care, less pathway: A review of the Liverpool Care Pathway. Department of Health.
NICE, 2021. End of life care for adults. National Institute for Excellence: London. Overview | End of life care for adults: service delivery | Guidance | NICE
Nursing and Midwifery Council (NMC). The code: Professional standards of practice and behaviour for nurses, midwives, and nursing associates. NMC: London. The Code: Professional standards of practice and behaviour for nurses, midwives and nursing associates – The Nursing and Midwifery Council
Health & Care Professions Council www.hcpc.uk.org
Parliamentary and Health Service Ombudsman, 2015. Dying without dignity: Investigations by the Parliamentary and Health Service Too many people dying without dignity, Ombudsman service report finds
Welsh Government, 2023. Quality statement for palliative and end of life care for Wales [HTML] | GOV.WALES, Quality statement for palliative and end of life care for Wales [HTML] | GOV.WALES
NHS England (2025) Fit for the Future: 10 Year Health Plan for England. Department of Health and Social Care. NHS England » Fit for the Future: 10 Year Health Plan for England
NICE (2015) Older people with social care needs and multiple long-term conditions. NICE guideline NG22.
Scotland
Gov.Scot, 2023. Executive summary – palliative and end of life care: strategic framework for action – www.gov.scot
Ireland
DoH, 2010. Living matters dying matters – EoL strategy for Ireland. Living Matters, Dying Matters strategy (2010) | Department of Health
Grab & Go Guide: Personalised care planning including Advance Care Planning
Personalised care planning
Personalised approaches like self-directed support and personal budgets involve enabling people to identify their own needs and make choices about how and when they are supported to live their lives. People need access to information, advocacy and advice so they can make informed decisions- “choice and control”
Introduction to personalisation – SCIE
NHS England » What is personalised care?
Advance Care Planning
Compassion in Dying, 2018. Advance Care Planning in general practice – does policy match reality? https://compassionindying.org.uk/library/advance-care-planning-in-general-practice-does-policy-match-reality
Clare Fuller – passion to improve professional education, raise public awareness and normalise conversations about Advance Care Planning
- Speak For Me LPA
- Advance Care Planning Explained | Plan with Confidence — Speak For Me LPA
- Advance Care Planning education for health and social care providers Advance Care Planning: translating frameworks into practice
- 7 keys to navigating a life changing illness 7 keys for navigating a life changing diagnosis
- The Podcast Index
- Advance Care Planning for Individuals, Families & Carers
Prognostication & tools
Gold Standards Framework tools
- Free GSF Proactive Identification Guidance for Professionals
- PallCare.info, 2023. Prognostic indicator guidance. pig.pdf (pallcare.info) gsf_prognostic_indicator_guidance.pdf
Scotland
Supportive and Palliative Care Tool SPICT October 2022
Wales
Palliative care prognostication relies heavily on identifying deteriorating health early to enable holistic Future Care Planning. Clinical teams use standardized tools like the SPICT (Supportive and Palliative Care Indicators Tool) and the GSF (Gold Standards Framework) proactive indicators
Spirituality
Pearce, S. and Collis, J., 2022. Creating space: Story, reflection and practice in healthcare chaplaincy. Sacristy Press
https://learn.nes.nhs.scot/50422/person-centred-care-zone/spiritual-care-and-healthcare-chaplaincy/resources/multi-faith-resource-for-healthcare-staff 2021 covers all aspects from birth to death
Gender & sexuality
Equality & diversity
The British Institute of Human Rights (BIHR) & Sue Ryder, 2017. End of life care and human rights: Practitioners guide. British Institute of Human Rights & Sue Ryder
Conditions
Overview/general
Chartered Society of Physiotherapy (CSP) CSP welcomes announcement of new support for people with long-term conditions | The Chartered Society of Physiotherapy
Dementia
Alzheimer’s Society information on palliative and end of life care https://www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care-making- decisions
NHS England information on dementia and end of life care planning https://www.nhs.uk/conditions/dementia/living-with-dementia/palliative-care
Dementia UK, information and support on end of life care https://www.dementiauk.org/information-and-support/looking-after-yourself-as-a-carer/end-of-life-care/
https://www.bgs.org.uk/end-of-life-care-in-frailty-dementia British Geriatrics Society information and guidance of palliative and end of life care
Heart Failure
https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/heart-failure Marie Curie palliative and end of life care information on supporting people with heart failure
Respiratory
Marie Curie palliative and end of life care information on supporting people with long term lung conditions https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/lung-conditions
Kidney Disease
National Kidney Federation provides information on end of lie care for renal patients https://www.kidney.org.uk/end-of-life-care-for-renal-patients
Care settings
Extra care housing
Children & young adults
Improving the quality of healthcare- National Confidential Enquiry into Patient Outcome and Death NCEPOD – Transition: (2023)
https://www.togetherforshortlives.org.uk/ Together for short lives provides information and resources for health and care professionals, families and those supporting children with serious illness
Grab & go guide: 24/7 access
Home death as a conditional ideal: ethnographic insights from an English hospital. Written with Jennifer Rogerson, published in Mortality. https://www.tandfonline.com/doi/full/10.1080/13576275.2025.2522685
End-of-life care: why we need to talk about dying | The King’s Fund
What do dying people and their families want from end-of-life care? | Healthwatch
Better End of Life Report | Marie Curie
End of life care conversations and access – NIHR Evidence
This is a House of Commons committee report, with recommendations to government. The Government has two months to respond. Sixth Report of Session 2024–26 Palliative Care
Grab & go guide: shared records
Education and training
Competency frameworks
Skills for Health, 2017. End of life care core skills education and training framework. https://www.skillsforhealth.org.uk/wp-content/uploads/2021/01/EoLC-Core-Skills-Training-Framework.pdf
Grab and Go Guide: Co-design
Grab and Go Guide: Leadership
Collaboration and partnership working
MDT Working
NHS England (2014) MDT Development Handbook: Working toward an effective multidisciplinary/multiagency team. NHS England.
IHPN (2024) Multidisciplinary Team Working: A resource for independent sector providers. Independent Healthcare Providers Network.
HSCI, 2023. Transforming Your Palliative and End of Life Care – Update (Feb 2014).pdf. hscni.net, Accessed: 2 October 2023.
Involving, supporting and caring for those important to the dying person
Talking about death dying and bereavement
Mastering our fear of death with the Jack-o’-lantern
How to celebrate Halloween with young children
When the skeletons won’t go home: what the law says after Halloween
Is trick-or-treating legal or not?
Between life and death: what Halloween reveals about our fear of the afterlife
https://www.hospiceuk.org/our-campaigns/dying-matters Dying Matters provides information on talking about death, dying and bereavement .
The UK Commission on Bereavement, 2022. Bereavement is everyone’s business. The UK Commission on Bereavement
Kübler-Ross, E. 1969. On death and dying. The Macmillan Company: New York.
https://www.helpguide.org/articles/grief/coping-with-grief-and-loss.htm
Supporting a bereaved person | AtaLoss.org: UK wide bereavement signposting and information website | Find Support Now
Receiving bereavement support in your workplace | Grief and practical tasks when someone dies | Marie Curie
Information for the public
https://www.mariecurie.org.uk/help/support/publications Marie Curie provides information and a range of booklets and resources aimed at people living with a terminal ill and their families’ friends and carers
https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/palliative-care-and-cancer Macmillian provides information on palliative and end of life care for anyone affected by it.
https://www.sueryder.org/end-of-life-care/free-end-of-life-leaflets/ Sue Ryder provides information on end of life care for anyone affected by it.
https://www.nhs.uk/tests-and-treatments/end-of-life-care/ NHS England provides information on all aspects of palliative and end of life care
https://performanceandimprovement.nhs.wales/functions/networks-and-planning/peolc/information-for-patients-and-carers/ NHS Wales provides information on all aspects of palliative and end of life care
https://www.nhsinform.scot/care-support-and-rights/palliative-care/ NHS Scotland provides information on all aspects of palliative and end of life care
https://www.nidirect.gov.uk/conditions/end-life-care-and-palliative-care Northern Ireland Direct provides information on all aspects of palliative and end of life care
https://www2.hse.ie/conditions/palliative-care/end-of-life/ Health Service Executive provides information on all aspects of palliative and end of life care
Information for professionals
https://compassionindying.org.uk/ Assisted dying – medical anthropologist on the complex practical and ethical road ahead
https://www.hospiceuk.org/innovations – Hospice UKprovides a directory of shared examples of creative ways to provide palliative and end of life care from hospices and other end of life care providers
https://spcare.bmj.com/ The BMJ Supportive & Palliative Care provides up to date research papers and abstracts in palliative and end-of-life care
https://blogs.bmj.com/spcare/ The BMJ Supportive & Palliative Care provides blogs on a variety of issues relating to palliative and end of life care
https://www.mariecurie.org.uk/research-and-policy/research Marie Curie provides information on research in palliative and end of life care
https://www.macmillan.org.uk/healthcare-professionals/for-your-role Macmillian provides information for Health and care professionals on a variety of aspects relating to palliative and end of life care
https://www.sueryder.org/end-of-life-care/for-healthcare-professionals/ Sue Ryder provides information for Health and care professionals on a variety of aspects relating to palliative and end of life care
https://nationalbereavementalliance.org.uk/category/resources/ The National Bereavement Alliance provides information and resources on all aspects of bereavement
https://learn.stchristophers.org.uk/resource-library/ St Christophers provide a library of resource from their care programmes course, events and conference
https://elearning.rcgp.org.uk/mod/book/view.php?id=12529 Royal College of General Practioners provides an end of life and palliative care toolkit for healthcare professionals, informal carers, patients and those close to them.
https://apmonline.org/recommended-reading/ The a Association of Palliative Medicine provides information on palliative and end of life care for professionals including useful book recommendations
https://apmonline.org/education-resources-02/ The a Association of Palliative Medicine provides information and resources on palliative and end of life care for professionals
https://library.nhs.uk/palliative-and-hospice-care/ NHS England provide information and resources for health and care staff
https://www.leedspalliativecare.org.uk/professionals/resources/ Leeds Palliative Care network provides information on both local and national resources
https://www.england.nhs.uk/eolc/ NHS England provides information on the context and delivery of palliative and end of life care
https://www.nice.org.uk/guidance/ng142 The National Institute for Health and Care Excellence provides evidence base guidance of palliative and end of life care
https://www.lancaster.ac.uk/health-and-medicine/research/ioelc/ The International Observatory on End of Life Care provides information on UK and international research in palliative and end of life care
https://www.rcn.org.uk/library/Subject-Guides/end-of-life-care The Royal college OF nursing provides a online library of resources about end of life care including books, reports and journal articles
https://iahpc.org/what-we-do/communication/sign-up/?gad_source=1&gad_campaignid=23667575496&gbraid=0AAAAAD_JQje6jHLKTpTEp The All-Ireland Association of hospice and palliative care organisation provides updates and information on all aspects of palliative and end of life care in Ireland –
https://www.pslhub.org/learn/patient-safety-in-health-and-care/patient-management/end-of-life-care/top-picks-15-resources-about-hospice-and-palliative-care-r10256/ Patient and safety learning hub provides resources for health and care staff in palliative and end of life care
https://eapcnet.eu/ The European Association of Palliative care provides professionals with and resources on all aspects of palliative and end of life care
https://www.chpca.ca/ the Canadian Hospice and Palliative Care Association provides information and useful educational resources for professionals in palliative and end of life care
https://www.ncpc.org.uk/publications/ National Council for Palliative Care provided publications relating to a variety of aspects on palliative and end of life care
resources & further support
Health and Social Care Professionals Resources
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