Using Realistic Evaluation to identify factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for the dying patient

Using Realistic Evaluation to identify factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for the dying patient preliminary findingsSupervisors: Dr. Peter OHalloran, Prof. Sam Porter & Dr. Michael Donnelly

Tracey McConnell BSc (Hons)

Funded by Centre for Health Improvement

1Overview of PresentationLiverpool Care PathwayResearch objectivesMethodologyData collection and analysisPreliminary findings

2Palliative CareApproximately 56 million people die each yearApproximately 15, 000 people die in Northern Ireland each yearProjections for 2017: approximately 310,000 people will be 65 years and overIncreasing prevalence of chronic conditions mean demand for palliative and end of life care services likely to increase

on an international level.......On a local level.......Projections based on the 2006 mid-year population estimates suggest that by 2017......3Limitations and ProblemsGold standard of care HospiceHospital 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

According to the End of Life Care Strategy (2008), hospices set the gold standard of care for end of life. However, hospices only deal with a minority of patients at the end-of-life (Department of Health (DH), 2008). Although the consistent finding is that hospital is the least preferred place at end of life. However, the paradox is that the least preferred place of death for patients and carers is the place where most people die. So one of the most difficult challenges facing the palliative care world is transferring the hospice model of care into the mainstream NHS

4Hospice model of care Relief from pain and other stressful symptomsAffirmation of life and dying viewed as normal processIntegrates psychological and spiritual aspectsSupports family/carers cope during illness and bereavement5Hospital model of cureDiagnosing dyingCommunicating about end of lifeWithdrawing unnecessary treatmentMedical failureEmphasis on cureSuffer physical, psychological and social symptomsInappropriate use of life-sustaining interventionsCostly to health service, patients and familiesCare during the last days of life remains problematic. Much of the difficulty lies in diagnosing dying and communicating about the end of life. 3 The need towithdraw unnecessary treatment is often a challenge in hospital settings as traditional medical models focus on curative treatment. 4, 5Making a diagnosis of dying may be seen as medical failure rather than an inevitable and final phase of life. 6 This emphasis on cure and digression from can result in a lack of awareness or recognition that the patient has entered the dying phase and a lack of knowledge on the part of the health professionals of what to do once the dying process has begun. 7 This means many patients and their families continue to suffer physical, psychological and social symptoms during the last days of life. 8 Additionally this can lead to the inappropriate use of life-sustaining interventions right up until the time of death. 9-12 These interventions can prove costly to the health system and burdensome to patients and their families.6

Liverpool Care PathwayKey sectionsInitial assessmentOngoing assessment Care after death

Aimto improve care of the dying in the last hours/days of lifeKey domains of care- Physical- Psychological- Social- spiritualIn response to reports and personal experience of inadequate end of life care outside the hospice setting, the HSPCT at the Royal Liverpool hospital along with staff from the Marie Curie hospice in Liverpool identified ICPs as a way to improve care for dying patients and their families. To summarise an ICP briefly, they provide clear goals for key aspects of care based on evidence of best practice, facilitate communication between team members and with patients and families, co-ordinate care processess and enable monitoring and evaluation of outcomes (Vanhaecht, 2007).The LCP itself focuses on the Endstage of chronic illness and aims to .The tool is also recommended by the Department of Health (DH, 2006, 2008) and by the National Institute for Clinical Excellence (NICE, 2004) for improving patient care at the end of life regardless of setting.

7LCP - UK - Europe - InternationalNorthern IrelandWalesScotland

NetherlandsSwedenSwitzerlandRepublic of IrelandGermanyItalySloveniaSpainNew ZealandAustraliaChinaIndiaJapan

As can be seen, the LCP framework is recognised nationally and internationally as leading practice in care of the dying to enable patients to die a dignified death and support relatives and carers. 8Issues - rationaleNational Care of the Dying Audit Hospitals (NCDAH) (2009) England: overall high standard of patient careShortcomings: failure to inform relatives about pathway (28%) or that relative was entering dying phase (24%); and spiritual/religious needs assessed in only 30% of patientsNCDAH (2009) N.I. Similar patternOnly 20% entered on pathway

Key rationale national audit reports and gap in the research baseFor example, at the beginning of the research audit results for the 2009 national care of the dying audit involving155 hospitals in England and showed overall high standards of patient care at end of life. However, also highlighted shortcomings in several outcome measures ..Similar findings emerged in the parallel N.I. Audit which also showed that of all patient who died in participating hospitals, only 20% were entered on the pathway. Results from the most recent national audit were just released in March and show a further decrease in the number of patients cared for on the pathway in N.I. 9Key Challenge: Understanding Success and FailureMostly 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 outcomeContext viewed as confounding factorNo explanation of how or why

Literature has shown there is a huge gap in the knowledge base. Evaluation research to date on the LCP has been mostly descriptive in relation to outcomes. Allen et als systematic review on the effectiveness of ICPs in general found information on context was largely ignored so couldnt tease out what factors are important for success. This could be explained by the past experimentalist approach with its focus on outcome. This approach views context as a confounding factor which has to be controlled for so a programmes success or failure is made explicit but with no explanation of the how or why. 10Research ObjectivesWhat 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?

11Methodology Introduction to Realistic EvaluationPawson and Tilley (1997)What works for whom in what circumstances?Realist signature What works for whom in what circumstances .. and why?

The term realist evaluation is drawn from Pawson and Tilleys seminal work, Realistic Evaluation (1997). Realistic evaluation slogan What works for whom in what circumstances?Realist signature What works for whom in what circumstances .. and why?

12Context-Mechanism-Outcome ConfigurationsRealist terminologyContext = values, needsMechanism = reasoningOutcome = outcome patterns

Realist terminology context-mechanism-outcome configurations (CMOc). Contexts = inter-relationships, values, needs of practitionersMechanisms = reasoning of practitioners in response to resources offeredOutcomes = observed outcomes

13Starting PointIf then propositionsIf the right processes operate in the right conditions then the programme will be successfulEvaluation then tests these programme theories. These are the starting point and provide if then propositions. For example, if there is formal LCP facilitation to generate support and increase perceptions of self-efficacy in relation to end-of-life care among generalist staff - then the LCP is more likely to be adopted and successfully implemented. In other words, if the right processes operate in the right conditions then the programme will be successful. Evaluation then tests these programme theories.14Theoretical Model Greenhalgh et al (2004)The innovationThe outer/inner contextAdoptersCommunication and influenceImplementation and sustainabilityComplementary

we have chosen to use the theoretical model put forward by Greenhalgh et al. (2004) to guide the investigation for a number of reasons. This model was commissioned by the NHS for the NHS to identify contexts in which interventions are more likely to be successfully introduced and sustained. The model is also comprehensive in terms of the factors considered, both contextual and in terms of practitioner reasoning in response to resources offered i.e. The intervention itself, the outer and inner organisational contexts into which the intervention is implemented, the values/needs of people involved , the types of communication and influence in terms of whether or not there were champions or positive opinion leaders for the intervention; and the implementation process. The model was also a good fit with the studies realist approach as the authors recommended that the model be tested further using a realistic evaluation approach.15Study designOrganisational Case Study

Cancer and Specialist Services and Acute Services

Two wards

In terms of study design we carried out an organisational case study in two service Groups within a Trust in N.I. implementing the LCP. (clusters of diagnostically related services managed as organisational units within the Trust). We met with colleagues in the Trust to identify which Service Groups were using the LCP and therefore suitable for the research. Then two wards were chosen from each, again on the recommendation of colleagues within the Trust. 16Realistic Evaluation ProcessStage one: Context-mechanism-outcome theory formulationRealist review Semi-structured interviews Audit dataMapping of all data on to Greenhalgh et als (2004) model

Literature review uncover theories about how approaches to implementing LCP thought to work- Semi-structured interviews with policy makers, practitioners, stakeholders and key users of the LCP baseline description of organisational context - Degree of success achieved - Mapping of all data onto Greenhalgh et als (2004) model to help explain the findings

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Interviewees Stage 2 Data Collection

Type of InterviewAnonymous codeFacilitatorF1Palliative Care ConsultantsP3 and P4Senior Medical StaffSMS1, SMS2, SMS3 and SMS4In order to gather data to test the theories from round one we carried out a round of repeat semi-structured interviews with key informants from round 1. Although we found it extremely difficult to recruit senior clinicians for round one, the data from round one suggested they were key to successful implementation. So with the help of colleagues who knew some of the clinicians and approached them on our behalf we were able to recruit four.

18Stage 3Data analysisInterviews Coded Audit data - outcomesCMO configurationsInterviews tape recorded and transcribed Coded according to relevant factor of Greenhalghs model and the initial theories from the realist reviewAudit data provided outcome measures

19RecruitmentIdentification of potential participants

How approached

Steps taken to facilitate recruitment processA meeting was arranged with the Specialist Palliative Care Team covering the Trust by the Clinical Advisor for the study in order to chart the way forward for the research. Email informing them who we were, what the research was about and inviting them to take part. Close collaboration with key links within the Trust20

Cancer and Specialist Services Ward 1 and Ward 2Type of IntervieweeAnonymous CodeWard SisterW1, W2Staff NurseSN3, SN1Senior DoctorSD1 (covered both wards)Junior Doctor JD2 (covered both wards)Service ManagerS1 (covered both wards)Data collection took place over eight months from March 23rd 2011 until November 29th 2011. The following tables present the interviewees (via anonymous codes) involved from each ward.

21Acute Services Ward 1Type of IntervieweeAnonymous CodeService ManagerS2 (covered both case study sites)Deputy Associate Director of NursingM1 (covered both case study sites)Ward SisterW3, W4 Staff NurseSN4, SN2Junior DoctorJD1(covered both case study sites)22Interviewees involved in the wider contextType of IntervieweeAnonymous CodeFacilitatorsF1; F2; F3Palliative Care ConsultantsP3; P4; P5Policy MakersP1; P2Interviews were also conducted with key stakeholders outside of the two case study sites in order to provide insight into key factors in the wider environment.

23Audit Data Results Organisational Case StudyNumber and proportion of wards using LCP 36% (33/91)Evidence it is sustained no continuing LCP education, training or auditProportion of deaths where LCP been used 18%

Audit data results for the organisational case study. Showed sustainability of the pathway had been problematic.

24Findings from Stage 1 Data collection and analysis C M O ConfigurationsContextMechanismOutcomeEnablingFull-time facilitator at implementation stageSupport staff through practice change and facilitate vital processes such as education along with audit and feedbackIncrease confidence and reduce anxiety in staff to provide end of life care DisablingLack of funding/adequate staffing levelsNo one to support the pathwaySustainability less successfulPreliminary Findings then helped build up a picture to begin to explain why.

1a) Funding for a full-time facilitator post at the implementation stage is vital for supporting staff and increasing staff competence and motivation to use the pathway.1b) It is also important that there is adequate recurring funding for someone to support sustainability of the pathway such as a part-time regional co-ordinator to offer continuing support and maintain communication both nationally and locally on pathway developments (inter-organisational collaboration).

25CMO 2ContextMechanism OutcomeEnablingVisible benefits of changeWinning hearts and mindsBuy-in at organisational and individual practitioner level DisablingCulture of curePerception of death as a failureResistance to the pathwayThe culture of cure in the hospital setting creates resistance to the pathway. Education along with regular audit facilitates a shift in thinking and practice from a sole focus on curing patients to recognition that caring for patients at the end of life is also a priority in the hospital setting. Education through overcoming misconceptions about the pathway and continuous audit of those patients both on and off the pathway to provide evidence of the value and effectiveness of the pathway to patient care at the end of life.

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CMO 3ContextMechanismOutcomeEnablingMandatory training for all staffAll staff attend training so know what the pathway is and how to use itPatients eligible for the pathway started on itDisablingLack of knowledge what the pathway is and how to use itMedical staff will not initiate pathway because they do not see the need for it and are apprehensive about diagnosing dyingNot all patients eligible for the pathway started on it.Mandatory training for all staff ensures adequate knowledge on the value of the pathway along with guidance on diagnosing the dying phase. This increases the likelihood that all eligible patients will be started on the pathway.

27CMO 4ContextMechanismOutcomeEnablingTop management support and ownership of LCPMotivates allocation of resources for continuing education programme and establishment of the LCP within the governance/management agendaSuccessful implementation and sustainability of the LCPTop management support and ownership of the LCP is vital for establishing the pathway within the governance/management agenda. This in turn may increase the motivation of the Trust to allocate resources for supporting processes such as education and audit.

28CMO 5ContextMechanismOutcomeEnabling Whole systems approachInvolvement of all staff at Policy, organisational and individual practitioner levelsAdoption of the pathway by ALL staffDisablingNo champion from within medical professionSome medical staff did not see value of pathway for improving practiceResistance to pathway by some medical staffA whole systems approach (involving all intended users, top management in the organisation and backing of policy makers) to implementation facilitates the involvement of staff at all levels and increases the likelihood that the LCP will be adopted at organisational and individual practitioner level.

29What works, for whom in what circumstances and why?What Works? For whom?In what Circumstances?Why?The InnovationKey attributes as perceived by intended users:a) Relative advantage (is the innovation seen as effective?)Yes: - Nursing Staff and Junior Doctors

No: - Some Senior Medical StaffSaw pathway as effective for guiding care at the end of life (tension for change)

Did not see the pathway as having any advantage over the care already provided (no tension for change)In terms of what works, for whom, how, and in what circumstances? This is an example of the initial findings from round 1 data collection and analysis which were mapped onto Greenhalgh et als model. This demonstrates that the innovation needs to be relatively advantageous (i.e. seen as effective) for staff and this is more likely to happen where there is tension for change (in other words where the present situation is seen as unacceptable). 30Research OutcomesOrganisational case study explaining:Success of implementation and sustainabilityCMO configurations What works, for whom, how, and in what circumstancesMiddle-range theoryPresented for use by those involved in implementationThe outcome of the research will be an organizational case study explaining the level of LCP implementation success through the development of CMO configurations. Then identification of what works, for whom, how and in what circumstances in order to provide a middle-range theory, which is theory that is close enough to the empirical data to be observable but abstract enough to be transferable in other settings. Presented for use by those involved in implementation of the LCP.31ReferencesAllen, 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.htmMirando, 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 SageVan der Heide, A., Veerbeek, L., Swart, S., Van der Rijt, 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. , Katholieke Universiteit Leuven. Veerbeek, L., van Zuylen, L., Swart, S.J., van der Maas, P.J., de Vogel-Voogt, E., van der Rijt, C.C. & van der Heide, 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.

32Thank you33 How people die remains in the memory of those who live on

Dame Cicely Saunders Founder of the Modern Hospice Movement34