1. Introducing the Te Ārai Palliative Care and End of Life Research Group Merryn Gott University of Auckland 1

2. Outline 2 1.Who we are 2.What we do 3.Te Ārai Network

3. The Te Ārai Palliative Care and End of Life Research Group 3

4. Our goal is to provide evidence to improve the provision of culturally-responsive palliative and end of life care. and end of life care. 4

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6. The Treaty of Waitangi. Partnership, Protection, Participation 6

7. Strong ethical framework Research with all participants is underpinned by Kaupapa Māori principles Involvement, respect and care as principles for working with study participants Co-design of research priorities and practices Giving back to participants & communities 7

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9. Research Themes 1.Settings of care (hospital, aged care) 2.Care beyond cancer 3.Innovative models of education 4.Supporting family and whānau carers 5.Partnership working 9

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11. Broad JB, Gott M, Kim H, Byd M, Chen H, Connolly MJ. Where do people die? An international comparison of deaths occurring in hospital and residential aged care settings in 45 populations, using published and unpublished available statistics. International Journal of Public Health. doi: 10.1007/s00038-012-0394-5. 11

12. Residential Aged Care: De Facto Hospice Connolly M, Broad J, Kerse, Boyd M, Gott M. (2014) Residential Aged Care - The De Facto Hospice for New Zealand's Older People. Australasian Journal on Aging 33 (2), 114-120. 12

13. Staff spend 50-75% of their time caring for residents at the end of life Frey et al (2013) Average ‘burnout score’ of 2.8 (SD =.96). A score of 2.5 - 3.4 indicates danger of burnout Frey et al (2013) Higher scores for burnout predicted a decreased likelihood of engaging in formal palliative care training Frey et al (2013) Palliative and end of life care in Aged Residential Care Almost half of NZers will be a resident in ARC before death Broad et al (2015) Families report satisfaction with ‘usual care’, but lack of communication around end of life care Frey et al (in press) 13

14. Barriers and facilitators to palliative care management amongst Health Care Assistants HCA’s provide the bulk of hands on care for residents at the end of life and reported extensive experience and expertise They identified their best learning about palliative care came through peer mentoring which they preferred to didactic teaching A lack of opportunity for debriefing following bereavement was identified Ultimately they felt their key role in palliative care management was not acknowledged by the wider team Fryer S, Bellamy G, Gott M. “Sometimes I feel like they just don’t hear me” The experience if Health Care Assistants in caring for imminently dying residents in Aged Residential Care. BMC Palliative Care. Under review.

15. Education is not enough HCA 4: Margaret had pneumonia in the end. She was just getting weaker and weaker. I said to the RN, you better call the family, but she didn’t. Margaret died, and the family came in and got very upset. She should have called the family. HCA 5: It was a bad mistake HCA 1: You could tell with her breathing HCA 2: They think, “oh you’re just a caregiver; you don’t know what’s happening”, but we’re with them every day. 15

16. Supportive Holistic Aged Residential Education Rosemary Frey, Michal Boyd, Jackie Robinson, Merryn Gott, Sue Foster, Tess Moeke-Maxwell, Lynda Smith, Jenny Thurston The key components of SHARE are: Clinical coaching by a specialist palliative care nurse (SPN) from Mercy Hospice Auckland and a Gerontology Nurse Specialist (GNS) from ADHB Support with the development of ‘goal of care’ plans for residents who meet GSF criteria for palliative care need Role modelling of conversations related to palliative care (including documentation with residents, families and GP’s) Debriefing amongst all ARC staff following a resident’s death Six month pilot study in 2 ARC facilities in Auckland Evaluation: Pre-test/Post-test Staff Questionnaires Post-Intervention Staff Interviews Post-intervention Bereavement Interviews Records Review 16

17. 1/5 inpatients met criteria for palliative care need 2/3 had died within 12 months 50% had a primary cancer diagnosis For 2/3 there was no documented evidence of a palliative approach to care 50% were admitted via ED 30% had a SPC referral Average of 3 admissions in last year of life for average of 33 days ¾ of staff surveyed wanted more palliative care education. There was a positive assocation between education and perceived confidence in palliative care management 21% of admissions were avoidable; predictor ARC resident 17 Frey et al, 2011; Frey et al, 2012; Gott et al, 2013; O’Callaghan et al, 2014; Robinson et al, 2014.

18. There are benefits from a patient perspective… I feel safe here because I can press the buzzer three times and know that somebody is going to come running whereas I can’t do that at home. They did the job I was there for which was to control the nausea and get me eating. They made very good suggestions for high health foods and to continue them at home that was very good. Big leaflets and lots of ideas for high health foods and managing the nausea. I am getting stronger. I got very weak with not eating but I am getting stronger. If I don’t go to hospital something might happen. I might die. Robinson J, Gott M, Gardiner C, Ingleton C. (2015) What are the benefits of a hospital admission for people with palliative care needs? Palliative Medicine. 18

19. Intervention development Addresses need for integration across continuum of care Is informed by the experiences and views of key stakeholders, especially patients and families 19

20. Need for public engagement……

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22. Financial costs of care The children are fed and we adults just have the leftovers, so we can make ends meet.… But it’s only temporary. That’s how we look at it. Mum needs us more, Mum needs it more. Gott M, Allen R, Moeke-Maxwell T, Gardiner C, Robinson J. "‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context." Palliative medicine (2015): 0269216315569337. 22

23. Digital stories 23

24. Te Pakekeganga: Living and Dying in Advanced Age 24

25. How can we support whānau/family/fono to provide palliative care? Review of existing resources Focus groups Co-design workshops to create new resources 25

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28. Te Arai Network 28

29. Connecting… Newsletter Email distribution list Conference Public lectures Social media Disseminating research/educational resources Publicize events Your ideas? t.morgan@auckland.ac.nz 29

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31. Follow us on social media 31

32. m.gott@auckland.ac.nz 32