1. WORKING COLLABORATIVELY: THE EUROPEAN ASSOCIATION OF PALLIATIVE CARE BEREAVEMENT TASKFORCE Orla Keegan, Head of Education, Research & Bereavement, Irish Hospice Foundation, Dublin, IRELAND Irene Murphy, Director of Bereavement & Family Support Services, Marymount University Hospice, Cork, IRELAND Inger Benkel, Social Worker PhD, Palliative Department, Gothenburg University Hospital, Gothenburg, SWEDEN; Dr. María Antonia Lacasta Reverte, Psychologist at the Palliative Care Unit of the Hospital Universitario, La Paz Madrid, SPAIN; Dame Barbara Monroe DBE (BA,B.Phil,CQSW) Hon Professor, International Observatory on End of LIfe Care, Lancaster University, UNITED KINGDOM; Dr Mai-Britt Guldin, Palliative Care Team, Aarhus University Hospital, Aarhus, Denmark

2. Outline Why? How? And what did we do? And so what?

3. EAPC PROCESS OF SETTING UP A TASKFORCE for bereavement WHY? A conversation Strategic opportunity A gap in knowledge

4. Taskforce Countries Ireland Denmark Spain Sweden United Kingdom Disciplines Psychology x3 Social work x3 Mode of work Teleconference Email Drop box Meetings EAPC Congress, Prague 2013 EAPC Congress, Copenhagen, 2015

5. PALLIATIVE CARE Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement (WHO, http://www.who.int/cancer/palliative/en/) http://www.who.int/cancer/palliative/en/

6. What do we know about actual bereavement service in palliative care? Australia: Mather (2008); Abbott, O’Connor and Payne (2008). US: Demner (2003). UK: Field et al, 2004; Reid, Field et al 2006; Field et al 2007. EAPC Atlas of Palliative Care (2007, 2013). Denmark (Danish Knowledge Centre for Palliative Care). Spain (SEPCAL).

7. Issues Single country studies, no European data or model? Published data relates to Australia, UK and US Only one comparison study (O’Connor 2009) notes similarities across countries – nurse led service, development obstacles connect to lack of fund and personnel; little audit and research. It concludes more guidance is needed on what constitutes an acceptable bereavement service in hospice/palliative care.

8. Contemporary literature Promoting a public health approach to bereavement care which has big implications for how hospice and palliative care services link with their communities Aoun SM, Breen LJ, Howting DA, Rumbold B, McNamara B, et al. (2015) Who Needs Bereavement Support? A Population Based Survey of Bereavement Risk and Support Need. PLoS ONE 10(3): e0121101. doi:10.1371/journal.pone.0121101 http://127.0.0.1:8081/plosone/article?id=info:doi/10.1371/journal.pone.012 1101 Margaret Sealey 1*, Moira O’Connor 1, Samar M. Aoun 2 and Lauren J. Breen 1 Exploring barriers to assessment of bereavement risk in palliative care: perspectives of key stakeholders http://www.biomedcentral.com/1472- 684X/14/49 1 2 1 http://www.biomedcentral.com/1472- 684X/14/49

9. Fig 2. The Public Health Model: Predicted (in brackets) and Actual Proportions for the three risk groups. Aoun SM, Breen LJ, Howting DA, Rumbold B, McNamara B, et al. (2015) Who Needs Bereavement Support? A Population Based Survey of Bereavement Risk and Support Need. PLoS ONE 10(3): e0121101. doi:10.1371/journal.pone.0121101 http://127.0.0.1:8081/plosone/article?id=info:doi/10.1371/journal.pone.0121101

10. Aims and Objectives Describe current practice in bereavement care in palliative care services in Europe with reference to two models Public health approach Three tiered model of National Institute for Clinical Excellence (NICE, UK) To make statement of recommendations for best practice in bereavement care Achieve European consensus for these recommendations EAPC Bereavement Task Force, Copenhagen, 2015

11. Methodology 54 item online questionnaire to explore the nature of bereavement care with reference to 3 tier approach Informed by previous surveys in UK, US, Australia Pilot survey to bereavement co-ordinators in different countries Disseminated to 56 National Associations in 32 countries in Europe Questionnaire available in English & Spanish- Blogs Open ended questions about local and cultural aspects EAPC Bereavement Task Force, Copenhagen, 2015

13. Results EAPC Bereavement Task Force, Copenhagen, 2015 370 online responses from 25 countries (78%) 302 offered bereavement support (82%)

14. Results Most offer bereavement services (n=302, 82%) And offer services at each of the three ‘levels’ used in the public health model....

15. Results

16. however Decisions are not governed by assessment tools.... One fifth are never audited and... Guidelines not evident

17. Results EAPC Bereavement Task Force, Copenhagen, 2015 %

20. Conclusion Rich data gathered – looking for partners to develop country information Dissemination Phase 2 EAPC Bereavement Task Force, Copenhagen, 2015

21. What did we learn from collaborative working Irish and Danes.... Time (long) and cost (cheap!) Life intervenes More the same than different.... Research, policy and practice gap....