Launched in May 2007, the programme has to date surfaced a wide range of issues regarding all aspects of end-of-life care in acute and community hospitals and has assisted with the establishment of frameworks to address these issues and to ensure that end-of-life care becomes central to the work of participating hospitals. These issues focus around four key themes: Integrated Care; Communication; Design & Dignity; Patient Autonomy.
While the great majority of people would prefer to die at home, the majority of people now die outside the home with at least half of all deaths occurring in acute hospitals (48%) or hospices (4%); deaths at home still constitute a quarter of the total (25%), and a fifth die in long-stay facilities (20%); the remainder are deaths from suicide and traffic acidents (3%). While it is recognised that people's prefered place of care and death may change over time, and that dying in an acute hospital may frequently be unavoidable, nevertheless, as many as 20% of all deaths in acute hospitals may be suitable for dying at home and, with concerted action, many more people might be enabled to die in the place of their choice.
Quality Standards for End-of-Life Care in Hospitals, supported by HIQA, are currently being finalised following public consultation and will be launched in March 2010. The first ever National Audit of End-of-Life Care in Hospitals, involving 1000 deaths, has recently been completed in 24 acute and 19 community hospitals. The final report will be launched in May 2010 at the start of Phase 2 of the programme.
The HSE has initiated a process of practice development for end-of-life care in hospitals and a range of networks are being developed to promote learning, innovation and good practice. These include a network for chairpersons of acute hospital Standing Committees on Dying, Death & Bereavement and a Community Hospital Network on Quality of Life and End of Life for the Greater Dublin Area where more than 18 community hospitals/units together with local HSE managers, acute hospitals, specialist palliative care providers and other primary care services have agreed to collaborate on improving the end-of-life care available to residents in long-term care. It is hoped to develop this approach in other areas across the country.
Expressions of interest are now invited from hospitals for supports to assist them participate in Phase 2 of the Programme. Interested hospitals are encouraged to partner with other hospitals and providers of end-of-life care services in their wider catchment area or region and to submit joint expressions of interest taking into account the need for closer integration between acute, sub-acute, long-stay residential and community / primary care services.
Priority consideration will be given to partnerships that include:
- A recognised university teaching hospital
- Hospitals which have participated in the recent National Audit of End-of-Life Care
- A community hospital, hospice or nursing home
- A primary care centre
- Individual hospital applications may also be considered subject to available resources.
Participation in Phase 2 will be guided by a Memorandum of Understanding (click here) committing the participating hospitals to:
a. An End-of-Life Care Development Plan based on the Quality Standards and National Audit
b. Inclusion of this plan in the overall service or business plan of the hospital, or of its appropriate governance / management structure
c. A senior manager being responsible for implementation of the plan
d. A governance structure to coordinate work on the plan which will include an external public interest representative
e. Facilitating patients’ choice regarding place of care at the end of life
f. Ongoing audit, evaluation or review of end-of-life care
Development supports from the HFH Programme could include:
- An End-of-Life Care Development Coordinator who will work in and across the hospitals and partners in the group in ensuring that appropriate End-of-Life Care Development Plans are introduced, implemented and monitored and that the necessary development and governance structures and systems are sustainable after April 2012
- Supports from the National Practice Development Coordinator (End-of-Life Care) jointly working with the HSE’s Office of Nursing Services Directorate and the HFH Programme to implement a practice development framework focused on quality end-of-life care and culture
- Access to all information, standardised education and training resources and courses developed through the HFH Programme to support the implementation of the Quality Standards
- Access to and support from the programme’s team of advisers and consultants e.g. communications, architecture & design, ethics, clinical, organisation development &coaching
- Access to any grants scheme developed by the HFH Programme to assist projects aimed at improving the physical environment for people at end of-life
- Information workshops and events related to the four programme themes: Integrated Care, Communications, Design & Dignity and Patient Autonomy
- Access to the audit and review systems, developed by the HFH Programme, with the support of HIQA, and support to enable participation in further auditing in 2011-12 taking into account the feedback from hospitals who participated in the 2008-2009 audit
- Support to hospitals to undertake further research into aspects of end-of-life care including attendance at national/international conferences to present findings
- Support from the National Steering Committee of the HFH which includes representation from key stakeholders including the Department of Health & Children, HSE, HIQA, nursing organisations, palliative medicine, care of older people, academia and a representative of the public interest,
Expressions of Interest (EoI) should address the following:
- The nature of the proposed partnership and the likely participants
- The proposed lead or coordinating organisation in the partnership and the contact person
- Willingness to agree to the proposed Memorandum of Understanding (Click here)
- Extent of efforts to engage with end-of life issues to date e.g.
- Development of guidelines, protocols, procedures or resources
o Participation in audit or system for review of deaths
o Establishment of intra or inter hospital structures to address end-of-life issues
o Nature and extent of induction and / or in-service training and education
o Projects or initiatives that addressed integration of care or care pathways, communication skills, improvement of the physical environment and facilities, ethical issues, practice development or research - Potential for an initiative involving all the likely participants which would facilitate people’s preferred place of care and death
- The nature of the development supports likely to be required
- The nature and extent of the resources which might be contributed from within the partnership
The EoI should also include a short but considered response to some of the issues emerging from the National Audit (Circa 500 words). A PowerPoint presentation of issues emerging from report 2 is attached. (click here)
This presentation describes various aspects of dying in acute and community hospitals in Ireland in 2008/9. The focus is simply on describing what happens to patients in their last week of life, as perceived by nurses and doctors. The patient's journey through the hospital is described in some detail from the time they enter hospital, the ward and room where they stayed, whether a diagnosis of dying was made, communication with patients and relatives, the type and quality of care received, and the moment of death and after.
Further analysis of this important data will be undertaken, and presented in 2010, on the factors which determine good quality care and good quality of life for patients whose last days are spent in hospital. In the final analysis of data, we will also develop a more streamlined and simplified model of audit, based on the factors which we have firmly established as key determinants, directly or indirectly, of the quality of care and the quality of dying in Irish hospitals.
Next Steps
If your hospital, organisation or service is broadly in sympathy with the approach outlined above and would like to explore possible partnerships and projects it might be helpful to arrange an informal discussion with the HFH Programme prior to submitting an Expression of Interest.
For an informal discussion please e-mail the Operations Manager, Mary Bowen, at mary.bowen@hospice-foundation or phone 086 823 9502
Submissions should be e-mailed to Roisin Clarke, Administrator, HFH Programme at
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Closing date for submissions: Friday 5th February 2010