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Palliative and End-Of-Life Care: Policies, Guidelines & Tools

Collection of information sources and resources on Palliative and End-of-Life Care

Where to find Policies Guidelines & Tools

This section provides sources for locating key national and international clinical guidelines, policy documents and evidence based reviews. 

It also gives a timeline overview of the key reports and policies in the development of Palliative Care services in Ireland.   

 

IHF Toolkit for Compassionate End-of-Life Care

Supporting people to die well in the circumstances now faced in health and residential care settings, is an enormous challenge. Infection control measures and strict visiting restrictions, although vital, mean the empathetic and high standards of end-of-life care that is the norm in theses settings is being impacted.

Developed in consultation with healthcare staff in acute hospitals, residential care and nursing home sectors, and those working in bereavement support and education, the Toolkit includes resources and guidance on subjects like communicating through PPE, care of the dying person, supporting the bereaved and self-care for staff.

 

The toolkit can be downloaded here 

Key Guidelines & Documents

National Clinical Effectiveness Committee (NCEC) Guidelines 

NCEC guidelines are based on a systematic gathering and evaluation of evidence to establish best practice and provide health professionals and patients with a document to aid decisions about appropriate and effective care.  

Guidelines related to Palliative Care & Palliative symptoms HERE 

National Institute for Health & Care Excellence (NICE) UK -  Improving Supportive and Palliative Care for Adults with Cancer; The Manual 

The NICE clinical guidance on supportive and palliative care provides a guide for professionals developing and delivering cancer services for adults with cancer. It advises requirements to ensure patients, families and carers, are well informed, cared for and supported.  

Quality of Death Index 2015 - Economist Intelligence Unit / Lien Foundation  

Updated international quality of death index ranking the quality of end-of-life care internationally.     

 

Economist Intelligence Unit / Lien Foundation Quality of Death report 2010

Report comissioned by the Lien foundation and produced by the economist intelligence unit ranking the quality of end-of-life care internationally.    

Global Palliative Care

European Association for Palliative Care (EAPC) Policies 

EAPC policy page brings together policy documents and provides updates on palliative and end-of-life care policy across Europe. 

EAPC Prague Charter 'Palliative care as a human right'. 2013 EAPC call for governments to pledge support for palliative care and access to pain relief as a human right.    

EAPC Update 2015 'Palliative care as a human right: what has the Prague Charter achieved?    

Uk End-of-Life Care Strategy

Published in 2008 'End of Life Care Strategy - promoting high quality care for all adults at the end of life' outlines the plan for the development of quality end-of-life care provisions across the UK.    

 

World Health Organisation (WHO) 

WHO documents and reports on access to palliative care and pain medication. WHO Global Atlas of palliative care is available HERE    

Dartmouth Atlas of Health Care  

Dartmouth overview of end-of- life care internationally.   

 

Key Policy Documents Ireland

Timeline of palliative care policy and key publications in Ireland 

2001 - Report of the National Advisory Committee on Palliative Care, 2001 (NACPC).

 Department of Health report on development of palliative care. The recommendations from which were adopted as national policy on palliative care.  

2005 A palliative care needs assessment for children

2006 - A Baseline Study on the Provision of Hospice/Specialist Palliative care Services in Ireland

Study conducted by the Irish Hospice Foundation published in 2006, this report highlights gaps and national variation in provision of services.

2008 - Palliative Care Services: Five-Year Medium-Term Development Framework 

This report identified and prioritised action to deliver an additional 203 hospice beds and 272 staff in hospice/palliative care services.  

2010 - Palliative Care for Children with Life-limiting Conditions in Ireland – A National Policy

This national policy provides a framework for developing services for children with life-limiting conditions and their families. Its recommends supporting families and health care professionals to provide home care for children with life limiting conditions. 

2010 - The National Clinical Programme for Palliative care

This programme was developed out of recommendations from the 2001 and 2008 documents.

2010 - Dying in hospital in Ireland; an assessment of the quality of care in the last week of life. Report 5, final synthesis report 

Review of deaths in Ireland in acute hospitals in 2008 & 2009    

2011 - Primary Palliative Care in Ireland

Irish Hospice Foundation report on the current state of primary care for patients in their last year of life and identification of routes to develop more palliative approaches for these patients through GP services.    

2013 - Oireachtas hearings and debates on End-of Life Care

Between October 24 and 14 November 2013 the Oireachtas Joint Committee on Health and Children, held a series of public hearings on end-of-life care issues in Ireland. Expert speakers addressed the committee and examined the current state of end-of-life care in Ireland.  Full details of all submissions and speakers HERE 

2014 - A good death; A Reflection on Ombudsman Complaints about End of Life Care in Irish Hospitals

Report by the office of the Ombudsman on complaints received in relation to care at end-of-life 

2014 - Palliative Care Competence Framework

This framework outlines core competencies and competencies specific to twelve health and social care disciplines. The framework aims to inform academic curricula and professional development programmes and to encourage inter-professional and inter-organisational collaboration in palliative care provision. 

2014 National Palliative Care Support Beds Review Subgroup. (2014). Report of the First National Palliative Care Support Bed Review. Dublin: Health Service Executive 

Palliative Care Support Beds (PCSBs) offer an intermediate in-patient option for palliative patients in their own area, generally in residential care facilities for older people. There were reported to be 179 PCSBs in 2011 but much geographic variation existed. The National Clinical Programme for Palliative Care Working Group conducted this review to determine the organisation of these Palliative support beds. 

2015 - Palliative Care Operational Plan 2015 

Overview of palliative care priorities for 2015 

Toolkits & other resources

Cicely Saunders International has published "You Matter Because You are You", a seven point palliative care action plan that identifies the major challenges now facing the palliative care system and outlines evidence-based solutions for each of them.  Cicely Saunders International has published "You Matter Because You are You", a seven point palliative care action plan that identifies the major challenges now facing the palliative care system and outlines evidence-based solutions for each of them.  

IHF  new free toolkit for those delivering end-of-life care as COVID-19 surges

Toolkit for Compassionate End-of-Life Care

 Hospice Friendly Hospitals Programme – Ethical framework on End-of-Life care 

Consists of 8 modules covering aspects of End-of-life care including decision making, patient autonomy and communication.  

Competence and compassion - End-of-Life care map 

A map developed by the Hospice Friendly Hospitals programme for staff involved in any aspect of end-of-life care. It is intended to provide practical advice and prompts along the end-of-life journey. It provides a set of key considerations for staff in end-of-life care.

Quality Standards for End-of-Life Care in Hospitals

Developed by the Hospice Friendly Hospitals programme,Additional publications from the Hospice Friendly Hospitals programme HERE  

End of life care Intelligence network (Uk) 

Comprehensive support site of the Uk National End of life Care Programme  which provides links to data, analysis tools, profiles and resources.

End of Life Care Quality Assessment (ELCQuA) Tool 

An online self-assessment tool has been developed by the National End of Life Care Intelligence Network, to help commissioners and providers of end of life care monitor the quality of services. 

Promoting excellence in end-of-life care - Tools

US site featuring a range of clinical, evaluation and management tools for organisations delivering palliative or end-of-life care   

Finding International Guidelines

TRIP database

Trip is a search engine for Evidence Based Medicine (EBM), guidelines and clinical reviews. Searches can be filtered by type and guidelines selected by country.  

International Clinical Guidelines Search Engine 

Customised Google search bringing together sources for clinical guidelines 

NICE

All NICE guidences and pathway documents are available on their searchable site.    

G.I.N Guidelines International Network

Searchable listing of international guideline sources. The database is free to search but some guidelines can only be accessed through a member subscription to G.I.N         

 

GAIN

Guidelines & Audit Implementation Network (GAIN) are part of the Regulation and Quality Improvement Authority (RQIA) in Belfast. 

SIGN

Scottish Intercollegiate Guidelines Network. Lists of guidelines by topic 

 
US Department of Health & Human Services searchable collection of guidelines by topic. Also includes Canadian guidelines.  
 
Listing of guidelines developed by the province of British Colombia Canada by topic 
 
 

Searchable database of Australian guidelines including a number on palliative, terminal illness and end-of-life care.    

Centre for Palliative Care (Australia) 

Listing of resources including relevant guidelines  

New Zealand Guidelines group 

Listing of all New Zealand healthcare guidelines  

National Health Library & Knowledge Service. Health Service Executive. Dr. Steevens' Hospital, Dublin 8. Tel: 01-6352555/8. Email: hselibrary@hse.ie

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