Supervisors: Dr. Peter O’Halloran, Prof. Sam Porter & Dr. Michael Donnelly

1. Using Realistic Evaluation to identify factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for the dying patient – preliminary findings Supervisors: • Dr. Peter O’Halloran, Prof. Sam Porter & Dr. Michael Donnelly Tracey McConnell BSc (Hons) Funded by Centre for Health Improvement

2. Overview of Presentation • Liverpool Care Pathway • Research objectives • Methodology • Data collection and analysis • Preliminary findings

3. Palliative Care • Approximately 56 million people die each year • Approximately 15, 000 people die in Northern Ireland each year • Projections for 2017: approximately 310,000 people will be 65 years and over • Increasing prevalence of chronic conditions mean demand for palliative and end of life care services likely to increase

4. Limitations and Problems • Gold standard of care – Hospice • Hospital – least preferred (Agar et al, 2008) • Paradox: this is the place where most people die (DH, 2008; Gomes and Higginson, 2008; Cohen et al., 2008) • Difficult challenges

5. Hospice model of care • Relief from pain and other stressful symptoms • Affirmation of life and dying viewed as normal process • Integrates psychological and spiritual aspects • Supports family/carers cope during illness and bereavement

6. Hospital model of cure • Diagnosing dying • Communicating about end of life • Withdrawing unnecessary treatment • Medical failure • Emphasis on cure • Suffer physical, psychological and social symptoms • Inappropriate use of life-sustaining interventions • Costly to health service, patients and families

7. Liverpool Care Pathway • Aim • to improve care of the dying in the last hours/days of life • Key sections • Initial assessment • Ongoing assessment • Care after death • Key domains of care • - Physical • - Psychological • - Social • - spiritual

8. LCP - UK - Europe - International • Northern Ireland • Wales • Scotland • Netherlands • Sweden • Switzerland • Republic of Ireland • Germany • Italy • Slovenia • Spain • New Zealand • Australia • China • India • Japan

9. Issues - rationale • National Care of the Dying Audit – Hospitals (NCDAH) (2009) England: overall high standard of patient care • Shortcomings: failure to inform relatives about pathway (28%) or that relative was entering dying phase (24%); and spiritual/religious needs assessed in only 30% of patients • NCDAH (2009) N.I. Similar pattern • Only 20% entered on pathway

10. Key Challenge: Understanding Success and Failure • Mostly descriptive (Mirando et al, 2005; Veerbeek et al, 2008; Van der Heide et al, 2010) • Systematic review – Integrated care pathways (Allen et al, 2009) • Past experimentalist approach – focus on outcome • Context viewed as confounding factor • No explanation of how or why

11. Research Objectives • What are the underlying mechanisms influencing the implementation of the Liverpool Care Pathway (LCP)? • What are the key enabling/disabling characteristics of the context for implementation of the LCP? • How do the mechanisms of implementation and the characteristics of the context combine to support or hinder the implementation of the LCP and achievement of the desired outcomes?

12. Methodology – Introduction to Realistic Evaluation • Pawson and Tilley (1997) • ‘What works for whom in what circumstances? • Realist signature – ‘What works for whom in what circumstances ….. and why?’

13. Context-Mechanism-Outcome Configurations • Realist terminology • Context = values, needs • Mechanism = reasoning • Outcome = outcome patterns

14. Starting Point • If → then propositions • If the right processes operate in the right conditions then the programme will be successful • Evaluation then tests these programme theories.

15. Theoretical Model • Greenhalgh et al (2004) • The innovation • The outer/inner context • Adopters • Communication and influence • Implementation and sustainability • Complementary

16. Study design • Organisational Case Study • Cancer and Specialist Services and Acute Services • Two wards

17. Realistic Evaluation Process Stage one: Context-mechanism-outcome theory formulation • Realist review • Semi-structured interviews • Audit data Mapping of all data on to Greenhalgh et al’s (2004) model

18. Interviewees Stage 2 Data Collection

19. Stage 3 Data analysis • Interviews • Coded • Audit data - outcomes • CMO configurations

20. Recruitment • Identification of potential participants • How approached • Steps taken to facilitate recruitment process

21. Cancer and Specialist Services Ward 1 and Ward 2

22. Acute Services Ward 1

23. Interviewees involved in the wider context

24. Audit Data Results – Organisational Case Study • Number and proportion of wards using LCP – 36% (33/91) • Evidence it is sustained – no continuing LCP education, training or audit • Proportion of deaths where LCP been used – 18%

25. Findings from Stage 1 Data collection and analysis – C – M – O Configurations

26. CMO 2

27. CMO 3

28. CMO 4

29. CMO 5

30. What works, for whom in what circumstances … and why?

31. Research Outcomes Organisational case study explaining: • Success of implementation and sustainability • CMO configurations • What works, for whom, how, and in what circumstances • Middle-range theory • Presented for use by those involved in implementation

32. References • Allen, D., Gillen, E. & Rixson, L. 2009, "Systematic review of the effectiveness of integrated care pathways: what works, for whom, in which circumstances?", International Journal of Evidence Based Healthcare, vol. 7, pp. 61-74. • Cohen, J., Bilsen, J., Addington-Hall, J., Lofmark, R., Miccinesi, G., Kaasa, S., Onwuteaka-Philipsen, B. & Deliens, L. 2008, "Population-based study of dying in hospital in six European countries", Palliative medicine, vol. 22, no. 6, pp. 702-710. • DoH. 2008, End of Life Care Strategy – Promoting High Quality Care for all Adults at the End of Life. Department of Health, London Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicy/AndGuidance/DHo862777 • Gomes, B. & Higginson, I.J. 2008, "Where people die (1974-2030): past trends, future projections and implications for care", Palliative Medicine, vol. 22, pp. 33-41. • Greenhalgh, T., Robert, G., Bate, P., Kyriakidou, O., Macfarlane, F., Peacock, R. 2004, How to Spread Good Ideas. A systematic review of the literature on diffusion, dissemination and sustainability of innovations in health service delivery and organization, Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO), Available at: www.sdo.lshtm.ac.uk/changemanagement.htm • Mirando, S., Davies, P.D. & Lipp, A. 2005, "Introducing an integrated care pathway for the last days of life", Palliative medicine, vol. 19, pp. 33-39. • Pawson, R. and Tilley, N. (1997) Realistic Evaluation Sage • Van derHeide, A., Veerbeek, L., Swart, S., Van derRijt, C., Van der Maas, P. J. & and Van Zuylan, L. 2010, "End-of-Life Decision Making for Cancer Patients in Different Clinical Settings and the Impact of the LCP", Journal of Pain & Symptom Management, vol. 39, no. 1, pp. 33-43. • Vanhaecht, K., De Witte, K. & Sermeus, W. 2007, The impact of clinical pathways on the organisation of care processes. , KatholiekeUniversiteit Leuven. • Veerbeek, L., van Zuylen, L., Swart, S.J., van der Maas, P.J., de Vogel-Voogt, E., van derRijt, C.C. & van derHeide, A. 2008, "The effect of the Liverpool Care Pathway for the dying: a multi-centre study.", Palliative medicine, vol. 22, no. 2, pp. 145-151.

33. Thank you

34. ‘How people die remains in the memory of those who live on’ Dame Cicely Saunders Founder of the Modern Hospice Movement