Ms Paula O'Reilly:

I thank members and the clerk for the invitation to the Irish Hospice Foundation to speak to the committee on the topic of accessing palliative care and social supports.

We are a national organisation with over 37 years of experience in the field of dying, death and bereavement. Our vision is an Ireland where people facing the end of life or bereavement are provided with the care and support they need. We understand how difficult the conversation on dying, death and bereavement is. We also understand that assisted dying adds a further complexity to this discussion. We have advocated for any exploration of the issue to be robust, respectful, inclusive and informed.

Regarding current experiences of dying and death in Ireland, more than 35,000 deaths were registered last year. This equates to nearly 100 people dying every day. Of those deaths, 83% were over-65s. The Central Statistics Office projects that this number will increase to just under 46,000 by 2040. Of Irish adults, 74% would prefer to die at home, but only 23% will do so. Hospitals remain the most common place, with 44% of people dying there, 23% dying in our nursing homes and only 8% dying in a hospice. Cancer and heart-related disease are the leading causes of death.

What are the public perceptions of death? In 2016, we conducted a survey, entitled "Have Your Say", to find out what was most important to Irish citizens as they thought about living with illness, death and bereavement. Over 2,500 people responded and the findings suggest that most people want to be pain free, be treated with and die with dignity, and feel comfortable and cared for, ideally at home. The survey also found that people had worries about being a burden on their families as they approached the end of life.

In 2022, we carried out our "Time to Reflect" survey, which was completed by over 2,200 people. The aim was to examine the impact of Covid-19 on people's attitudes towards dying and death. The findings revealed that people continued to prioritise supports for end-of-life and bereavement care.

In our recent consultation report, "Dying Well at Home", a good death was described by focus group participants as comfortable, free from pain and suffering, honouring the end-of-life wishes of the person, and allowing people to die with dignity in the place of their choosing and with those they wanted present.

There are enablers to a good death, but there are also obstacles that people face in realising a good death in Ireland today. Access to timely palliative care is associated with improved quality of life. The percentage of people dying that will require palliative care is projected to increase by up to 84% by 2046. However, these figures only account for people in their last year of life and many people are living with more complex needs and, therefore, will require longer palliative care. There is a need to focus on strengthening access to primary palliative care and generalist palliative care. Access to care can be improved through expanding the knowledge of end-of-life care across different professional and care settings.

Regarding community and home supports, the services delivering primary care and home supports are facing ever-increasing challenges. Waiting lists continue to grow for accessing community supports and there is an alarming number of people who have been assessed and approved but remain without adequate home supports.

Conversations are key to enabling a good death. They are dependent on the person and his or her family being supported and having good relationships in place with healthcare professionals, particularly in terms of advance care planning.

On the lack of bereavement supports, bereavement is relatively invisible in formal policy, yet it impacts many people each year. For every one death, up to ten people are bereaved and significantly impacted. This means that more than 350,000 people are grieving a death every year. A lack of preparedness can lead to poor bereavement outcomes for people. This can be affected by an inadequate level of understanding of and information on caring, practical considerations such as planning for a funeral, and emotional and medical preparedness in knowing what to expect at the time of death.

There are a number of recommendations in our submission that apply regardless of how a person is supported to die or whether the committee recommends to legislate for change in this area. These recommendations are to publish the new adult palliative care policy; to strategically plan to support an expansion of community-based primary palliative care and home care services so that people at the end of life can die at home; the provision of education and training to improve death literacy; a cross-departmental commitment to a bereavement approach; the development of standards for bereavement care; and the initiation of a register of advance healthcare directives by the Decision Support Service, as outlined in legislation.