Implementation of Quality Indicators in Palliative Care Study (IMPACT)

1. Implementation of Quality Indicators in Palliative Care Study (IMPACT) Nathan Davies, Laura Maio, Dr Krishna Vedavanam, Professor Steve Iliffe, UCL Professor Jill Manthorpe, Social Care Workforce Research Unit, Kings College London Professor Sam Ahmedzai, Department of Oncology, Sheffield University PCPH 18th February 2013

2. Overview • Background – palliative care for dementia and cancer • What is IMPACT? • Overview of Methodology • European commonalities

3. Cancer • 12.7 million new cases of cancer diagnosed worldwide in 2008 (Cancer Research UK, 2008) • Overall death rate 7.6million worldwide in 2008 (Cancer Research UK, 2008) • Increases in incidence, mortality and morbidity are predicted (WHO, 2006)

4. Dementia • Ageing population • 2 billion worldwide by 2050 (UNFPA, 2012) • 7.7 million people have dementia in Europe and this will double by 2050 (Alzheimer’s Europe, 2009) • Median survival after diagnosis 6.7 years (60-69) and 1.9 years (90+) (Rait et al., 2010)

5. Dementia symptoms at the end of life • Aspiration • Dyspnea • Severe communication impairment • Incontinence • Infections (immune system failure) • Risk of falls/immobility • Difficulties in swallowing

6. Prognostication Death trajectory typical in cancer

7. Prognostication Death trajectory typical in chronic conditions (including dementia)

8. What is IMPACT? • IMplementation of quality indicators in PAlliative Care sTudy – 2011 - 2015 • Nijmegen, The Netherlands (WP1, WP3) • Bonn, Germany (WP4) • Trondheim, Norway (WP5) • Bologna, Italy (WP6) • London, England (WP2)

9. Aims • Develop a model of palliative care taking national variations into account • Develop a toolkit of Quality Indicators which can be implemented to improve palliative care across Europe and across dementia and cancer • Develop a toolkit of optimal strategies to improve organisation of palliative care across Europe and across dementia and cancer

10. Quality Indicators • Quality indicators are explicitly defined and measurable items referring to outcomes, process, or structure of care, which allow measurement of the standard of care • Developed from existing literature • 700 + down to 36 • Delphi procedure

11. RAND modified Delphi Procedure • Consensus method to determine the extent of agreement on an issue • Accepted method for developing indicators where research evidence is lacking • 2 rounds: • Round 1 – online survey – rate quality and usefulness • Round 2 - consensus meeting – discussion

12. Example Quality Indicators • An (electronic) file of a person in need of palliative care is accessible to professionals in charge of the person 24/7. • Do you have a procedure in place to ensure that relatives of persons who received palliative care provided by your service are offered bereavement support, if they need or wish to have support? • Are opioids available 24/7 for patients in need of palliative care in your service?

13. Where? • 8 sites • Primary Care • Hospitals • Care homes • Hospices At least 2 sites in each setting

14. What do we need? • We are interested in talking with GP’s about: • Quality indicators • Piloting a set of quality indicators and strategies to improve organisation of palliative care for dementia and cancer

15. Pre-Test • Quality Indicators implemented • Profile of site • Organisational Consultantdiscuss the results

16. Implementation Phase • What do they want to improve? • Select from 40 Improvement Strategies from Toolkit • Large scale educational method • Small scale educational method • Mentoring • One on one education • Time frame - 6 Months

17. post Test • Repeat Quality Indicators • How did they improve? • Evaluation of the improvement strategies and quality indicators using in depth interviews

18. What are the common barriers to good quality palliative care for both cancer and dementia across five European countries?

19. Method • 67 semi-structured interviews and one focus group • 16 Interviews + 1 focus group (England) • 10 Interviews (Germany) • 16 Interviews (Italy) • 11 Interviews (The Netherlands) • 14 Interviews (Norway) • Analysed using thematic analysis methods

20. Sampling Frame

21. Results • 5 Main obstacles: • Poor communication between professionals and patients and their families • Limited structural/functional integration of services • Complex funding for palliative care • Variability in processes of care, including boundaries, definitions, knowledge, skills and inclusiveness • Time constraints

22. Communication between services and professionals • Information about treatment at transfers • Specialist and generalist not talking • Continuity of care poor

23. Communication between services and professionals “The handover from hospital to general practitioner and the handover from the general practitioner to out-of-hours general practitioner can be much better. [...] it is a bottleneck that the general practitioner sometimes doesn’t know what is going on at the time the patient is being discharged [...].” (Professor in palliative oncological care, The Netherlands)

24. Communication between services and professionals “In general, specialised palliative care personnel are consulted too late” (Palliative Care Physician, Germany)

25. Communication between patients/family and professionals • Particularly problematic for dementia • Inability to report or localise pain leading to behavioural disturbance • Planning is important to deal with communication (ACP) • Not just dementia patients but also cancer with professionals unable to discuss death

26. Communication between patients/family and professionals • “One of the biggest challenges in the care of palliative care patients is probably the direct communication with these patients. To be able to engage in the living world of these patients - there is a great need of training in communication for physicians and nurses.” (Consultant/Advisor for Palliative Care, Germany)

27. Communication between patients/family and professionals • “[....] Mediterranean Countries lack communication, we communicate in a bad way, or we do not communicate at all...this derives from a paternalism that belongs to us, you know. We are afraid to say, and this leads to a sort of show, I call it the lies’ show, where everybody knows but no one says” (Oncologist, Italy)

28. What’s next? • Knowledge of barriers informs strategies for change • Pre – post test beginning • Evaluation of use of quality indicators and strategies • Interviewing carers about quality of care

29. Thank you! Nathan.davies.10@ucl.ac.uk www.impactpalliativecare.eu Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/2007-2013] [FP7/2007-2011]) under grantagreement n°[258883] . Disclaimer: The views expressed here are those of the authors and not of the European Commission.