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«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»

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Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway

in Primary Care: What Works, For Whom and in What Circumstances? Doctoral thesis,

Northumbria University.

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http://nrl.northumbria.ac.uk/policies.html The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What Circumstances?

Sonia Michelle Dalkin PhD The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What Circumstances?

Sonia Michelle Dalkin A thesis submitted in partial fulfilment of the requirements of the University of Northumbria at Newcastle for the degree of Doctor of Philosophy Research undertaken in the Faculty of Health and Life Sciences and in collaboration with the NHS North of Tyne February 2014 Abstract Background: Finding effective ways to care for people with palliative care needs is a national priority. A primary care locality has developed and implemented an Integrated Care Pathway (ICP) for those with life limiting illnesses. It focuses on identifying patients early, regardless of disease type, and uses proactive and patient centred interventions to plan for a good death. Although palliative care pathways present a promising practice framework, the literature does not allow for an assessment of how and when they work best. This thesis aimed to explain which parts of the ICP worked best, for whom and in what circumstances. Design: Realist evaluation was used to guide the analysis of multiple data strands: quantitative data from the GP practices; interviews with palliative care patients and bereaved relatives; bereaved relatives and matched health care professional questionnaires; focus groups with health care professionals; consultation recordings with palliative care patients and their GPs. Results: The results of this study are multifaceted, and focus on the conditions of successful implementation, such as the presence of a champion; palliative care registration decisions for all diagnoses and the importance of leadership and peer support; advance care planning, including the roles of mental capacity and time constraints; communication in consultations and the role of patient and GP traits; and using open multicomponent communication strategies to facilitate home deaths. Discussion: A realist approach has exposed how the ICP implementation has led to positive practice and patient level outcomes. The ICP can be construed as a translational tool, which enables the operationalisation of policy directives on shared decision making, proactivity and patient centeredness in primary care. In the context of palliative care, this study allows important reconceptualisations of shared decision making and advance care planning to be presented.




List of tables and figures

Glossary of Abbreviations





Formulation of the research questions

Protocol publication

Flow of the thesis

Chapter 1: Key issues in palliative and end-of-life care

Palliative care: historically and in practice

Preferences in end-of-life care addressed through palliative care

Difficulties in discussing death and dying

The political mandate

Important concepts from palliative care policies

Proactive care

Patient centred care

Shared decision making

Difficulties in translating policy in to practice

An ageing population

Time constraints

Communication surrounding death and dying

Litigation in palliative care

Definitions of palliative and end-of-life care

Aids to translating policy into practice

Continuous Quality Improvement

Diffusion of Innovation

Normalisation Process Theory

Summary of aids to translate policy into practice

Chapter Summary

Chapter 2: Integrated Care Pathways

What is an integrated care pathway?

The Liverpool Care Pathway for the Dying Patient

The Integrated Care Pathway under study

Advance palliative care registration

Preference discussions and advance care planning

Home and hospice care

Out of Hours notifications

Traffic light system

Multidisciplinary Team Meetings

Anticipatory care medication

The Liverpool Care Pathway for the Dying Patient

Palliative Care Quality Visits – Continuous Quality Improvement

Evidence of Integrated Care Pathway effectiveness in palliative care

Implementation of the Gold Standards Framework to enhance palliative care services What is known so far?

Chapter Summary

Chapter 3: Methodology


Questions of ontology, epistemology and methodology in realism

Theoretical framework: realist evaluation

Social Programmes

• Context

• Mechanism

• Outcome

How is a social programme evaluated?

Research questions and programme theories

Data Collection and Analysis


The operationalisation of the data collection into realist evaluation

Ethical approval

Chapter Summary

Findings chapters

Chapter 4: Embeddedness of the Integrated Care Pathway as a new initiative.......... 117 Initial questions asked of the data

CMOC1 – Integrated Care Pathway intervention use and preferred place of death. 118 Outcomes: Intervention use predicts presumed preferred place of death............. 118 Mechanism - The ICP and increasing perceived capability and capacity............ 120 Context: Palliative care at the top of the political agenda


CMOC2 – Commissioned services in the ICP

Outcome: Variable commissioned service use

Mechanism: Increased support for palliative care patients who need it............... 123 Context: Increased need for palliative care services


CMOC3 – Continuous quality improvement and intervention use

Outcome: Increased use of Integrated Care Pathway interventions

Mechanism: Continuous Quality Improvement

Context: Proactive and patient centred care


CMOC4 (I) – Peer support, leadership and embeddedness of the ICP

Outcome: Embeddedness - three high performing practices

Mechanism: Opinion leaders and a champion

Context: Shared nursing team on site which facilitates MDT meetings............... 152 Summary

CMOC4 (II) – Low peer support and perceived detachment

Outcome: Less use of the palliative care register and other interventions........... 155 Mechanism: Lack of communication

Context: Detachment from the ICP and locality


Chapter Summary

Chapter 5: Identifying and registering palliative care patients

Initial questions asked of the data

CMOC1 – Palliative care registrations

Outcome: Increase in all palliative care registrations from 2008 to 2012............ 164 Mechanisms: The decision to register patients

Context: Consensual definitions


CMOC2 – Registering non-cancer patients

Outcome: Less non-cancer patients than cancer patients registered

Mechanism: Stress when registering a non-cancer patient

Context: Unpredictable illness trajectories


CMOC3 – Care home residents

Outcome: Less non-cancer patients than cancer patients registered

Mechanism: Anxiety about registering care home residents

Context: Elderly non-cancer patients’ prognosis is difficult to predict................ 186 Summary

CMOC4 – Recent increase in non-cancer registrations

Outcome: Significant increase in non-cancer registrations from 2011 to 2012.... 188 Mechanism: Legitimation through education

Context: Changes in cause of death and palliative care for all


Chapter Summary

Chapter 6: Preference discussions and the locality advance care plan.................. 198 Initial questions asked of the data

CMOC1 – Markers for initiating preference discussions

Outcome: Increase in preference discussions

Mechanism: Health care professionals’ desire to be patient centred

Context: A change in condition or increased needs


CMOC2 – False hope can prevent preference discussions

Outcome: Preference discussions can occur late

Mechanism: Preference discussions can dash patients’ hopes for recovery......... 209 Context: False hope from secondary care


CMOC3 – Time constraints in primary care

Outcome: Preference discussions do not predict use of the locality advance care plan Mechanism: Additional paper work generated from the locality advance care plan Context: Time constraints in primary care


CMOC4 – The Mental Capacity Act and the locality advance care plan................. 217 Outcome: No significant increase in locality advance care plans from 2009 to 2012 Mechanism: The mental capacity act and instability of capacity

Context: The locality advance care plan is to be used with those who have capacity to engage


CMOC5 – A change to the advance statement from Deciding Right

Outcome: The locality changed to the use of the advance statement

Mechanism: The advance statement

Context: The locality advance care plan is not user friendly


Chapter Summary

Chapter 7: Facilitating difficult conversations in palliative care

Initial questions asked of the data

CMOC1 - High monitor and low blunter

Context: Information seekers: GP-A and patient 1 (Mary)

Mechanism: Advance Care Planning

Outcome: Locality advance care plan reviewed


CMOC2 – High monitors and high blunters

Context: Information seeker or avoider? GP-B and patient 2 (John).............. 240 Mechanism: Advance Care Planning

Outcome: Advance care planning does not occur


CMOC3 - Low monitor and low blunter

Context: Low monitoring and blunting scores: GP-C and patient 3 (Susan)....... 245 Mechanism: Advance Care Planning (not firing)

Outcome: Advance care planning does not occur


Formulation of a new CMOC

Chapter Summary

Chapter 8: Facilitating a home death

Initial question asked of the data

CMOC1 – Caring for a loved one who is dying

Outcome: Increase in home deaths

Mechanism: Easily accessible palliative expertise

Context: Death is hidden


CMOC2 – Open communication strategies to increase ‘home’ deaths

Outcome: Increase in ‘home’ deaths

Mechanism: Open communication strategies (preference discussions and ACP) 273 Context: Family and carers knowledge of the patient’s preferences


CMOC3 – Care home deaths

Outcome: No significant increase in care home deaths

Mechanism: Fear of reprimand and consequences of a ‘wrong’ decision............ 284 Context: Litigious society


Chapter Summary

Chapter 9: Discussion

The overall programme theory; the ICP as a translational tool

Shared Decision Making

Patient centred care


Study findings in relation to the current literature on ICPs

Implications for practice



Future research



List of tables and figures Figure 1: Context, Mechanism and Outcome Configurations in realist evaluation........... 87 Figure 2: The operationalisation of the method

Figure 3: A correlation between the number of ICP interventions administered per patient and the number of patients who achieved their presumed preferred place of death........ 119 Figure 4: CMOC1, ICP intervention use and preferred place of death

Figure 5: CMOC2, commissioned services in the ICP

Figure 6: Mean number of palliative care registrations between 2007 and 2012, using Death Audit data.

Figure 7: Mean number of preference discussions between 2009/10 and 2011/12, using MIQUEST data.

Figure 8: Anticipatory medication prescriptions from 2009/10 to 2011/12.

Figure 9: Mean number of LCP use between 2009/10 and 2011/12, using MIQUEST data.

Figure 10: CMOC3, CQI and intervention use

Figure 11: CMOC3 (I), peer support and embeddedness of the ICP.

Figure 12: The number of palliative care registrations in Practice C from 2007 to 2012, using Death Audit data

Figure 13: CMOC3 (II), low peer support and perceived detachment

Figure 14: CMOC1, palliative care registrations

Figure 15: The number of cancer deaths in total compared to the number of cancer deaths that were on the palliative care register, for 2011, using Death Audit data.

Figure 16: The number of non-cancer deaths in total compared to the number of noncancer deaths that were on the palliative care register, for 2011, using Death Audit data.

Figure 17: Ratios of palliative care registered to not palliative care registered deaths for those with cancer and non-cancer for each practice in 2011, using Death Audit data.... 176 Figure 18: CMOC2, registering non-cancer patients

Figure 19: CMOC3, care home residents.

Figure 20: Recent increases in non-cancer registrations

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