International Observatory on End of Life Care Lancaster University United Kingdom. Professor Sheila Payne. 20th October, 2016
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1 An innovative intervention to improve palliative care in long term care facilities in Europe (PACE) project: another programme to improve care of the dying? 20th October, 2016 Professor Sheila Payne International Observatory on End of Life Care Lancaster University United Kingdom
2 Overview Introduction to improving care for older people living in residential nursing homes Introduction to the PACE project Why do research in nursing homes? Changing cultures of care Future directions
3 Getting to know you Ask your neighbour about one thing that they would like staff to know about them, if they were dying in a nursing home?
4 Did you introduce yourself first? What did you find out? Anything surprising discovered?
5 Palliative care for older people in Europe (PACE) Research project Professor Lieve van den Block PACE Consortium partners in Helsinki
6 PACE Project design Phase 1 Study 1 Study 2 Mapping of palliative care provision in Long term care facilities (LTCF) in 29 countries in Europe Retrospective analysis of the end of life care of 200 deceased residents of LTCF in six countries, at least 50 residents with dementia Cluster Randomised Control Clinical trial of an educational and development programme for staff in 12 LTCFs in six countries
7 Countries participating in the PACE project
8 What do we know about palliative care delivered in LTCF in Europe?
9 Mapping palliative care in LTCFs in Europe EAPC Taskforce To map and classify different structures, organizational models, and policies related to palliative care provision in long term care facilities (LTCFs) in Europe Led by Professor Katherine Froggatt
10 Information collected from 29 European countries Albania, Austria, Belgium, Croatia- Hrvatska, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Latvia, Lithuania, Luxemburg, Netherlands, Norway, Poland, Portugal, Romania, Spain, Sweden, Switzerland, Turkey, UK.
11 Albania Austria Belgium Croatia Hrvatska Cyprus Czech Republic Denmark Finland France Germany Greece Hungary Iceland Ireland Israel Italy Latvia Lithuania Luxembourg The Netherlands Norway Poland Portugal Romania Spain Sweden Switzerland Turkey United Kingdom How many older people in the population of each country? Proportion of population 65 years and older Range is 7.6% in Turkey to 20% in Italy and Germany, Ireland 12% (%)
12 Number of LTCFs per 1000 people over 65 years in population Number of institutions: 18 (Latvia) to over 17,000 (UK) (data only available for 9 countries)
13 Classification of LTCFs On-site (employed) TYPE 1 TYPE 2 TYPE 3 Physicians Nurses Care assistants Nurses Care assistants Care assistants
14 Austria Belgium Denmark France Germany Iceland Ireland Italy Luxemburg Netherlands Norway Poland social care Poland health care Spain Sweden Switzerland UK Organisational structures 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Private Not-for-profit Public
15 Number of deaths in LTCFs 70 % % deaths in LTCFs 10 0
16 Palliative care provision in LTCFs None Albania Latvia Lithuania Poland Romania Turkey Minimal Croatia Cyprus Czech Republic Finland Greece Iceland Israel Italy Norway Portugal Spain Sweden Some Denmark France Germany, Luxembourg, Norway Widespread Austria Belgium Ireland Netherlands Switzerland UK
17 How can we improve palliative care delivered in LTCFs? Ask your neighbour (on the other side!) for two things that would improve palliative care in their nursing home?
18 PACE Intervention development team
19 Designing a new educational and development programme for staff PACE Steps to Success intervention Cross cultural adaptation Implementation process in cluster randomised trial
20 PACE Steps to Success intervention Based on a UK intervention Route to Success and Six Steps to Success
21 Key components
22 PACE Resources Care Home Staff: Information Folder Care Home PACE coordinator: Information Folder Care Home PACE coordinator: Tools Folder Country Trainer: Information Folder Country Trainer: Tools Folder 2 day training programme for Care Home PACE Coordinators
23 Who is involved? Country trainer Care Home manager Care Home PACE Coordinators Care Home care staff GPs Families Country trainers involved in two training meetings in UK
24 How is the PACE intervention implemented? Preparation (2 months) Implementation (6 months) Consolidation (4 months)
25 Cross cultural adaptation Agree content Ready for RCT Translate resources Modify Review in situ
26 Cluster randomised trial in progress answering these questions: Does the intervention improve staff knowledge and attitudes? Does it improve end of life care in care homes?
27 Why do research in nursing homes? Combining disciplinary and clinical expertise Combining methodological expertise Developing conceptual, theoretical and definitional clarity Addressing global challenges in nursing homes Funding opportunities Development of common measurement tools and evidence-base Reduction of redundant effort Multicentre studies involving larger samples Cohesive dissemination of relevant and timely information Broader reach and greater impact of findings Capacity building of next generation of researchers Capacity building for staff in nursing homes
28
29 Changing cultures of care Improving end of life care for residents in nursing homes Improving the support for family members during transition to end of life care and in bereavement Enhancing the welfare of staff working in nursing homes Recognising and rewarding innovations in care Importance of leadership and management buy-in to sustaining innovations and supporting change
30 Future directions Outcomes of the PACE project Availability of the PACE Steps to Success programme Testing the feasibility of the Namaste intervention for those with advanced dementia (new Research project led by Professor Katherine Froggatt)
31
32 Thank you for your attention For more information: PACE: ENRICH:
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