Ms Sharon Foley:

I take this opportunity to commend the committee's Chairman and members on their decision to hold a series of hearings into end-of-life care. They are doing the people of Ireland a great service and I welcome the initiative. Reviewing the care of the most vulnerable members of our society is both worthwhile and essential. Every year, 29,000 people die in Ireland, and it is estimated that 290,000 people are left bereaved. It is obvious that death matters in Ireland. While €72 million is budgeted for specialist palliative care, international research suggests that up to €1.3 billion of the national health budget is being expended on end-of-life care. However, this spending is largely unplanned and uncoordinated. No one wins, neither the patient nor the State.

The elements of a good death are truly personal to each and every one of us. There are many elements, personal, communal and societal, which contribute to whether a person has a good death. We cannot promise to be able to influence each of these factors but we do believe that much more can be done by health and social services to ensure better end-of-life care, everywhere. We believe it is possible to secure high-quality care for those facing death which will also ensure the best use of resources. We believe it is the right of every person to die in comfort and dignity, but we believe this must be planned for. The key recommendation of the Irish Hospice Foundation is that we need a national end-of-life and bereavement strategy to plan for the inevitable and to ensure there is no absence of care and no ignorance of need and that end-of-life care is as good as possible.

A national strategy is needed to help us to plan, develop and co-ordinate end-of-life care in hospices, hospitals, homes and communities, as well as addressing the wider economic, legal and administrative issues. This must be a strategy for the entire population, from those who need GP support up to all those who need specialist palliative care to manage their pain and other complex symptoms. This strategy needs to be relevant and supportive of all health care and social care staff who are required to deliver health and social care. The strategy must be relevant to all patients, young and old, to patients all over Ireland and to patients with all conditions, including dementia.

I have three further specific recommendations. We need to develop hospice care. We have plenty of strong national policies around specialist palliative care but we fall down when it comes to putting policy into practice. The result is that some citizens have more access to more services and a choice of care while as many as 2,500 people cannot access an inpatient hospice bed because these do not exist in the regions in which they live. The current number of hospice beds is 155. According to HSE plans this number should be 450. The budget for the national specialist service in 2013 was €72 million - about one third of the cost of running one Dublin hospital for a year. This budget has been cut repeatedly over the past few years. Three regions in the country have no inpatient hospice unit - the north east, the midlands and the south east - as well as the counties of Kerry, Wicklow, Mayo and Roscommon. This inequality between regions and counties is unacceptable. Some people are able to access a full range of services while others with the same needs are denied this access.

The lack of a full range of hospice services has an impact for patients and the health system. Hospital care is expensive. Our research into deaths from cancer shows that fewer sufferers die in hospital if they live in a region which has a hospice, from 52% of deaths in hospital in the north east to 21% in the mid-west. The support of a hospice home care team will mean that a patient is nearly twice as likely to be able to die at home.

Practical ways to support the provision of specialist palliative care are urgently needed. A national end-of-life and bereavement strategy would help us to plan all services, including specialist hospice care. In addition, there must be improved support for acute hospitals to deliver better end-of-life care. Most of us wish to die at home, but 43% of us will die in an acute hospital. A hospital audit we conducted shows that more than 80% of people who died in hospital were admitted via the emergency department, and had the same long wait as everybody else. That is not what people want for themselves or their loved ones. The audit also estimated that up to one quarter of patients could have died at home if the appropriate community supports had been in place.

A great deal remains to be done. Our hospitals aim to cure, but they must acknowledge and plan for their role in providing end-of-life care. The reality is that people die every day in hospitals. That is not a failure on the part of those facilities; it is a fact of life. We need to support hospitals in delivering the very best end-of-life care which ensures dignity and comfort for the dying patient. There are already examples of excellent practice throughout the country, which should become everyday practice across the board. For example, our hospice-friendly hospitals programme has developed a range of recognised quality standards, staff training programmes and practical resources. If a charity can do that much, one can only imagine what might be done if services are properly planned and funded. There is scope for substantial innovation and enhancement within the estimated €1.3 billion that is allocated to end-of-life care. I urge members to strive for more and work to do better.

Death in hospitals should be considered as part of the national strategy for end-of-life care. While we await that strategy, we have a fantastic opportunity arising from the formation of the new hospital groupings. These groupings should be directed to develop and deliver comprehensive plans for how they will cope with the people who die in their facilities and how they will care for the bereaved. At the same time, we need to help more people to fulfil their wish to die at home. Two thirds of those asked express a preference to die at home, but only 26% actually achieve that preference. While people sometimes change their minds, it is clear that we can do more to help greater numbers to fulfil their wish to die at home. A great deal of good work is already being done through our primary palliative care programme, our nursing for night care services and our funding of children's outreach nurses who support families caring for children at home. However, active planning is needed to develop comprehensive home and community supports which, at the same time, will save resources in the acute hospital setting. Again, we come back to how a national strategy can help us to develop community supports to help people to die at home.

If members take away only one point from today's meeting, I hope it is an awareness of the need for a national end-of-life and bereavement strategy which helps us to plan ahead and ensure people can die well, wherever they are. It is worth remembering that we all have only one chance to get it right in terms of our end of life. I thank the Chairman and members.