Evaluation: Programme to Support Palliative and Hospice Care in the Republic of Ireland: Final Report
Trinity College Dublin17 January 2013
Investment in end-of-life care has made Ireland a world leader in advancing palliative and hospice care but regional inequities persist, according to an evaluation by Professor Mary McCarron and colleagues at Trinity College Dublin.
The evaluation examined The Atlantic Philanthropies’ End of Life programme – which aimed to improve the care and quality of life for patients dying from an incurable illness and to ensure they and their families received excellent end-of-life care and services. From its first grant in 2004 through its final grant in 2010, Atlantic invested €25 million in the programme. Activities supported under these investments are due to conclude by 2014.
The programme was carried out by several Atlantic grantees including Milford Care Centre, Limerick; the Irish Hospice Foundation; Marymount Hospice; the All-Ireland Institute for Hospice and Palliative Care and the Irish Association for Palliative Care.
A 2004 survey found that too few people near death in Ireland were receiving appropriate hospice and palliative care. For example, more than 60 per cent of all deaths in Ireland each year took place in acute hospitals yet less than 25 per cent of the country’s large hospitals had a full specialist team dedicated to palliative care. Further, nearly half of Ireland’s counties had no inpatient hospice units and few non-cancer patients who were dying had access to hospice treatment. These findings came despite a 2001 Irish government policy to provide universal palliative care to everyone in need
(Note: hospice and palliative care are often used interchangeably in Ireland. Palliative care is commonly used by people working in medical or healthcare settings.)
In 2004, Atlantic began a €25 million programme with the aim of turning Ireland into one of the best places in the world to experience end-of-life care. The programme’s key components were:
(1) Improving services for hospice patients in hospitals, in-patient hospice settings and at home by both specialist palliative care professionals and generalists such as nurses and doctors.
(2) Supporting education and research activities including training workers and clinicians in best practices.
(3) Funding accreditation and advocacy efforts including supporting the establishment of standards and monitoring.
A January 2013 evaluation report found that Atlantic’s programme had considerable success in expanding and improving the provision of end-of-life care including:
- Increased access to care in all settings following investment in services in hospice, hospital and at home. For example the Marymount Hospice, a new in-patient hospice facility, doubled the number of hospice beds—from 24 to 44—in Cork County and serves as the specialist hub for palliative care services in Cork and surrounding areas.
- Increased awareness of hospice and palliative care nationally among both patients and healthcare professionals. The Hospice-Friendly Hospitals programme, which works to ensure that end-of-life care is central to hospital practice, trained nearly 3,000 staff to improve palliative care for patients and families. It operates in 80 per cent of acute hospitals.
The programme also produced “Quality Standards for End-of-Life Care,” which highlight 18 ways in which hospitals can advance end-of-life care.
- Increased access to care for non-cancer patients. A Hospice at Home Service, the first of its kind in the Republic of Ireland, made a commitment to extend care to patients with conditions other than cancer. Operated by the Milford Care Centre, the project reported that non-cancer referrals increased from 13 per cent in 2008 to 30 per cent in 2010.
- Increased education programmes spanning basic to specialist levels of palliative care. The Irish Hospice Foundation’s education database lists 40 courses addressing bereavement, 121 on palliative care and 10 on spirituality. While all of these courses cannot be directly attributed to The Atlantic Philanthropies, neither can it be separated from the effect of projects such as Hospice-Friendly Hospitals and Hospice at Home.
- Establishment of the first of its kind All-Ireland Institute for Hospice and Palliative Care, with a mandate to strengthen research, training, standards and policy influence. The only one of its kind in the world, the All-Ireland Institute for Hospice and Palliative Care is a consortium of eight health agencies and four universities. One key outcome is improved collaboration between palliative care and the wider health sector.
The evaluation noted the following challenges remaining in the hospice/palliative care field in Ireland:
- The End of Life programme has increased capacity in regions that previously had few hospice resources but has not fully addressed geographical inequities.
- Poor communication between specialist palliative care provision and end-of-life care provided by generalists is a continuing issue.
- There has been insufficient statutory support to implement comprehensive specialist palliative care provision in low-resource regions.
Atlantic has commissioned a study by Trinity College Dublin that examines the costs and effectiveness of different models of palliative care in Ireland. It is expected to be completed in the fall of 2013. Moving forward in its new Strategy on Ageing, Atlantic has identified the palliative care needs of people with dementia as an important area of focus. This work will seek to inform the development of the Irish government’s National Dementia Strategy.
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Baseline Study (PDF)