The report by Irish politicians also suggests that such a strategy could form the major part of an overarching, interdepartmental end of life and bereavement strategy, informed by public consultation, encompassing the wider financial, legal, social, cultural, educational and administrative issues relating to end of life.
Other recommendations include:
- Legislatively underpinning the Quality Standards for End of Life Care as recommended by the NESC.
- Ring-fencing the specialist palliative care budget for a minimum of five years to prevent an undermining of the services currently available and to protect future investment in the sector.
- Including provisions governing the use of Advance Care Directives in the Assisted Decision-Making (Capacity) Bill 2013.
- A ‘special patient status’ for all palliative care and end of life patients, that prioritises their needs across all healthcare and community services.
- Addressing the regional disparities which exist in the provision and funding of specialist palliative care services in Ireland, to ensure that the needs of all those who require specialist palliative care services are met – whether it be in the home, in the community or in a specialised hospice.
The report calls for all hospitals to draw up strategies for dealing with palliative and end of life care and bereavement, with a designated person within each hospital being given responsibility for implementation and compliance with these standards. Also, the provision of single occupancy rooms for patients who are dying should be considered a priority.
Committee Chairman, Jerry Buttimer TD, said: “During October and November 2013 the Joint Committee met with a number of key stakeholders and experts, including those involved in delivering end of life and palliative care in hospices, hospitals, nursing homes and in the community. A public consultation process was also run which resulted in a large number of submissions being received.
“We would like to recognise the significant work which has been done, particularly by the voluntary sector, in developing and improving palliative and end of life care in Ireland. According to a 2010 Report from the Economist Intelligence Unit, which investigated the care services in 40 countries, Ireland rates very favourably, taking fourth position in overall ranking and fifth for quality of death. Ireland was also noted as one of the nations with the highest levels of public debate about end of life care.
“However, evidence presented to the Joint Committee at its hearings on this issue suggests that significant deficiencies exist in the provision of end of life and palliative care in Ireland, in particular, inequalities based solely on geographic location.
“This report focuses on the most significant issues identified throughout the course of the Joint Committee’s deliberations and sets out the key facts and figures presented by stakeholders, and identifies a number of key issues upon which its bases its conclusions.”
Reactions
Welcoming the report, Chief Executive Officer of the The Irish Hospice Foundation, Sharon Foley, said she hoped the government will act on the findings of the report and put palliative and end of life care at the top of health and other policy agendas.
She also commended the Dail Committee chairman, Jerry Buttimer TD, and members for the hearings saying “a great service” had been done for the country.
“We passionately believe that much more can be done to support the health and social services to deliver better end of life care everywhere and this report is a major step in this direction.
“It is the right of every person to die in comfort and dignity but this is something we must plan for. It is possible to secure high quality care for those facing death while also ensuring the very best use of resources. A national strategy on palliative care, end of life and bereavement, as recommended in today’s report, will play a key role in ensuring this.”
Ms Foley said this strategy must be for the entire population – from those who need GP support to those who need special palliative care to manage their pain and other complex symptoms and to those left behind and facing grief. The strategy, she stressed, needs to be relevant to patients of all ages with all conditions including dementia.
“It also needs to be wider than healthcare. It needs to look at the economic, administrative and legal issues including the funeral industry and bereavement.”
Ms Foley also welcomed the committee recommendation that the government address the regional disparities which exist in the provision and funding of specialist palliative care services in Ireland.
“As many as 2,500 patients have no access to inpatient hospice care in their area as they don’t exist. We have three regions in Ireland with no in patient hospice units – the north east, the midlands and the south east, as well as Kerry, Wicklow and Mayo. Citizens are living and dying with an inequitable system. We have approximately 150 hospice beds today but we should have 450 and we also have significant deficits in hospice staff.“
Ms Foley said more need to be done to help people fulfil their wish to die at home. Figures show that while 67% of us would prefer to die at home only 26% of us will do so while another 25% will die in long stay settings. “Lots of good work is being done through the IHF Primary Palliative Care programme, the Hospice home care teams and national hospice homecare for children programme. In the latter, we we are funding 85% of the programme which is supporting families to care for children, with life limiting illness, at home.”
Download the report from the Committee pages on the House of the Oireachtas website.
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