1. FORUM ON END OF LIFE IN IRELAND: WORKING TO INFLUENCE POLICY Sarah Murphy, Forum on End of Life in Ireland and Irish Hospice Foundation

2. Background The Forum on End of Life in Ireland was launched in 2009 2009-2010: Conducted a year-long public consultation about end of life A National Council was set up to carry out the work of the Forum, chaired by former Supreme Court judge Mrs Justice Catherine McGuinness Membership: experts working in the area of end of life – specialist palliative care, ethicists, lawyers, architects, emergency medics, nurses, health care practitioners in range of settings (community, hospitals, hospice and nursing home)

3. Forum public consultation Matters to People? 2009-2010: Year long public consultation 9 public meetings held nationwide 23 workshops, 108 presentations made on how the challenges of dying, death and bereavement should be addressed 167 submissions received from members of the public, health care professionals, academics and statutory and voluntary organisations

4. Issues raised in the public consultation 1. End of life decision making Involvement of patient themselves; family – doctors mistakenly asking next of kin to consent to DNAR – Need for proper training for doctors Public demand to make decisions about end of life and to have a way of recording them – Think Ahead project Legislative framework required for advance directives - advance directives are a means of safeguarding patient autonomy and facilitating communication

5. Issues raised in the public consultation 2. Funerals One of Ireland’s most unregulated industries High costs of funerals No mandatory accreditation or health and safety requirements for funeral service providers Lack of standards for funeral service providers Lack of transparency for consumer

6. Issues raised in the public consultation 3. Waiting times for doctors to pronounce death Grieving families waiting hours for doctor to pronounce death, despite it having been recognised by nursing staff Inefficient use of personnel as doctors being called to pronounce death rather than attend living patients Inefficient use of beds and distress to patients sharing wards with patients who have died but are not moved to the morgue

7. Issues raised in the public consultation 4. Need for overarching policy to address all end of life issues End of life issues go beyond health care and the remit of the Department of Health They include legal, administrative, environmental, social and economic Need for cross-departmental strategy Need for end-of-life proofing of all future policies – life cycle approach to policy making

8. Forum Work Plan

9. Forum responses and policy work 1. End of life decision making Think Ahead project: Tool to guide the public in planning for end of life, regardless of their age or health. Covers health, legal, financial affairs, funeral wishes (www.thinkahead.ie)www.thinkahead.ie Advocacy work with Departments of Health and Justice in relation to adding provision for advance directives into the Assisted Decision Making (Capacity) Act 2013. This has not yet been passed but will come before the Dail (parliament) on 27 May. This Act will replace the Lunacy Act 1871

10. Forum responses and policy work 2. Funerals Council produced a discussion paper and press release on the Irish situation regarding funeral costs and the regulation (or lack thereof) of funeral service providers Paper also looked at international models Advocated for the inclusion of parliamentary questions Called for standards to be implemented

11. Forum responses and policy work 3. Waiting times for doctors to pronounce death National Council researched the need to extend authority to pronounce death to nurses and paramedics as identified Produced discussion paper and issued press release calling for this to happen, suggesting protocols and additional training based on UK models Paramedics regulatory body Medical Committee ruled to extend this competence to paramedics HSE pursuing the extension of authority to nurses and has invited the Forum to sit on the Policy Advisory Group. Policy to be enacted in December 2015

12. Forum responses and policy work 4. Need for overarching policy to address all end of life issues Advocated for an overarching end of life strategy to include all areas impacting on end of life (beyond health) Department of the Taoiseach (Prime Minister) has committed to undertaking a scoping exercise of: End of life services being delivered nationally and the End of life issues Government should be considering Forum asked to participate and support the work

13. Government acknowledgement of Forum agenda Oireachtas Committee on Health and Children Hearings on End of Life Care, November 2013, report published in July 2014 Committee stated that end of life issues are wider than health care Committee recognised importance of work areas addressed by the Forum and its role in addressing end of life issues in Ireland Department of the Taoiseach (Prime Minister) has committed to undertaking a mapping exercise of: End of life services being delivered nationally across all Government Departments and the End of life issues Government should be considering Irish Hospice Foundation and Forum on End of Life In Ireland asked to participate and support the work

14. Where to now? Forum 2015 – public event taking place on 10 September Theme is ‘Dying to Talk? Conversations about end of life in Ireland’ We will be asking the public for feedback on our work so far and guidance on where to best place our efforts for the future

15. For more information Sarah.Murphy@hospicefoundation.ie www.thinkahead.ie www.hospicefoundation.ie; http://hospicefoundation.ie/programmes/public- awareness/forum-on-end-of-life/ www.hospicefoundation.ie http://hospicefoundation.ie/programmes/public- awareness/forum-on-end-of-life/

16. THANK YOU