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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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Figure 21: Mean number of preference discussions between 2009/10 and 2011/12, using MIQUEST data.

Figure 22: CMOC1, markers for initiating preference discussions

Figure 23: CMOC2, false hope can prevent preference discussions

Figure 24: A correlation between preference discussions and locality advance care plans.

Figure 25: CMOC3, time constraints in primary care

Figure 26: The mean number of patients who had locality advance care plans from 2009 to 2012, using Death Audit data.

Figure 27: CMOC4, the MCA and the locality advance care plan

Figure 28: CMOC5, a change to the advance statement from deciding right.................. 224 Figure 29: CMOC1, high monitor and low blunter.

Figure 30: CMOC2, high monitor and high blunter.

Figure 31: CMOC3, low monitor and low blunter

Figure 32: Mean number of home deaths in the fourteen GP practices between 2007 and 2012, using Death Audit data

Figure 33: CMOC1, caring for a loved one who is dying

Figure 34: Mean number of ‘home’ deaths in the fourteen GP practices between 2007 and 2012, using Death Audit data

Figure 35: Mean number of hospital deaths between 2007 and 2012, using Death Audit data.

Figure 36: Mean number of hospice deaths between 2007 and 2012, using Death Audit data.

Figure 37: CMOC2, open communication strategies to increase ‘home’ deaths............ 281 Figure 38: Mean number of care home deaths in the fourteen GP practices between 2007 and 2012, using Death Audit data.

Figure 39: CMOC3, care home deaths

Figure 40: The overall programme theory of the ICP

Figure 41: Greenhalgh, Robert et al., (2004) - Conceptual and Theoretical bases for the spread of innovation in service organisations, reproduced with permission from Wiley (Appendix 36).

Glossary of Abbreviations ACP – Advance Care Planning (to refer to the process of advance care planning, using all documentation described in Deciding Right) ADRT – Advance Decision to Refuse Treatment CCG – Clinical Commissioning Group CMOC – Context, Mechanism, Outcome Configuration CPR – Cardiopulmonary Resuscitation CQI – Continuous Quality Improvement CQUIN – Commissioning for Quality and Innovation DNACPR – Do Not Attempt Cardio-Pulmonary Resuscitation EHCP – Emergency Healthcare Plan FG1 – Focus Group 1 FG2 - Focus Group 2 FG 3 - Focus Group 3 GSF – Gold Standards Framework GSFCH – Gold Standards Framework for Care Homes ICP – Integrated Care Pathway LCP – Liverpool Care Pathway for the Dying Patient LES – Locally Enhanced Services MBSS – Miller’s Behavioural Style Scale MCA – Mental Capacity Act MDT – Multidisciplinary Team MIQUEST - Morbidity Information Query and Export Syntax NPT – Normalisation Process Theory OOH – Out of Hours PCQV – Palliative Care Quality Visits PCT – Primary Care Trust PW-LPA – Personal Welfare Lasting Power of Attorney QDDM – Quality of Dying and Death Measure SSM – Soft Systems Methodology

Acknowledgements

I extend my sincere thanks to the participants in this research. For any person to share from their personal or practice experience can be overwhelming. Their courage and dedication to improvement in the realm of palliative care has been an inspiration and encouragement to me. I know that there is anticipation of the findings and I would sincerely like to thank them for their patience in waiting for the results.

I would also like to thank those from the locality in which the service is located. They have provided continuous support, information and learning opportunities to aid my local and practice knowledge. A great thank you is extended to the gatekeepers, without whom collection of data from patients and bereaved relatives would not have been possible and this PhD would not have been reflective of their experiences.

I also extend my boundless appreciation to my three supervisors: Dr. Monique Lhussier, Dr. Diana Jones and Dr. Bill Cunningham. Your unrelenting support has motivated me whilst your challenges have prompted my learning to go to depths I could not have foreseen. Monique’s knowledge of realist evaluation and constant support in this methodological domain has been invaluable. Anna’s attention to detail, academic problem solving skills and finesse in writing style is something I shall always admire. Bill’s dedication to continuous quality improvement, support in my integration into the locality and development of my practice knowledge has been vital. I have been extremely fortunate to have such supportive and considerate supervisors.

I would like to thank the NHS North of Tyne and Northumbria University for giving me the opportunity and funding to embark on this journey and enhance my learning. Great thanks are also given to Joanne Atkinson for her continued emotional support and practice knowledge, and to Dr. Pete Phillipson for his statistical advice. I also extend great appreciation to the steering group of this research: Dr. Shona Haining, Rachael Mitcheson, Errol Gair and some of the aforementioned (Joanne Atkinson and the supervisory team).

I am indebted to numerous friends and family members who have helped me through the research process, of whom a few need special mention. To my parents and my sister, Jill, for their unwavering belief that I was capable of such a feat; to my partner Gianluca for his continued support and understanding; my colleague and friend Grant for his academic help, patience and moral support; and finally to my friend Charlotte for her skilled proof

–  –  –





I declare that the work contained in this thesis has not been submitted for any other award and that it is all my own work. I also confirm that this work fully acknowledges opinions, ideas and contributions from the work of others.

Any ethical clearance for the research presented in this thesis has been approved.

Approval has been sought and granted by the School Ethics Committee and National Research Ethics Service (NRES) on 28/09/2011 and 13/12/2011, respectively.

Name: Sonia Michelle Dalkin

Signature:

–  –  –

"Life is pleasant. Death is peaceful. It's the transition that's troublesome."

– Isaac Asimov, American science fiction novelist and scholar (1920 - 1992).

Background When initially facing the prospect of working within the palliative care domain I was undoubtedly nervous. My background was in psychology (Psychology BSc and Health Psychology MSc) so immigrating into health care was daunting, let alone the palliative care domain. People often asked me “won’t it be depressing?” and I was not sure of the answer. But something intrigued me; the opportunity to make a difference in an area that affects every person. What I have found is that the palliative care domain is not depressing; it is actually somewhat the opposite. In the course of the three years of this PhD I have never felt upset or disheartened by the area I work in or by the people I have had the privilege to interview. They have shown me that palliative care is inspiring; it can change lives and can also aid people in their unavoidable fate. I feel as a result of this realisation I now know that previously I was affected by the death and dying taboo that western society faces and throughout this PhD that taboo has been broken down from within me. Thus, the need for death and dying to be discussed in society, I now feel, is pivotal. As the quote above from Issac Asimov demonstrates, the transition from life to death is difficult, but palliative care is a way to manage this transition. It will never be easy but it should always be attempted.

I came to this PhD, as aforementioned, from my MSc, with no formal training or expertise in primary or palliative care. I came to find that this was actually an advantage. Although learning the infrastructures, tools, and relationships within primary care, and understanding the service I have been evaluating was not easy, I have had no biases throughout this study. Instead I understood all health care professionals’ roles and the difficulties that come with them. I have no allegiances to any group. This makes this thesis a very impartial and balanced account of a service implemented to improve primary care.

Having a background in the social sciences I was very drawn to realist evaluation (Pawson and Tilley 1997) for several reasons. The first was its underlying wariness of strong claims for evidence, drawing on a Popperian philosophy of science (Popper 1959). Throughout my psychology undergraduate training it became clear that all scientific data is peppered with ambiguity. The accumulation of explanation leads to an increased scientific knowledge and investigation often stops when researchers are satisfied that there is enough scientific evidence to support the claim. However, this accumulation of evidence could be falsified by new evidence in the future and thus nothing is absolute truth (Popper 1959). The second notion that drew me to realist evaluation was its embrace of the human mind and how the fate of a social programme lies in the reasoning of its stakeholders (Pawson 2013). Having a background based in psychology I was aware of individual differences and the uniqueness of individuals and their reasoning. To see this embraced and linked to context in a methodology that sought explanation of data was very attractive to me. Thirdly, I wished to pursue a methodology that explained real life issues, encompassing the difficult phenomena that can affect outcomes; realist evaluation aims to include and explain confounding variables as opposed to eradicate them, an aspect that lends it to complex real life evaluation. Fourth and finally, one of realist evaluation’s foundations is the explicit generation and testing of theory. I am a great believer in science and logical scientific principles, to see a methodology that allows the use of theory in a flexible way that does not have a sole focus on outcome was refreshing.

In summary, I faced two new challenges when I started this PhD: palliative care and realist evaluation, both of which I was drawn to and both of which I have been lucky enough to embrace and enjoy.

Formulation of the research questions As described, my previous academic and professional life had not been in palliative or end-of-life care, thus I came to this PhD ravenous to explore the domain. Integration into the locality, the field of palliative and end-of-life care in general, and delving into realist evaluation gave me a greater understanding which prompted the formulation of the research questions. Understanding these domains made it clear that a lot is known about palliative and end-of-life care – it cannot be considered as a sparsely researched topic. However, there is little research on palliative and end-of-life care using realist methodology. This gave me a great breadth of research paths to follow in this thesis. I not only wanted to generate research that was relevant to the locality as a result of the Integrated Care Pathway (ICP), but also generate research that had a larger scope and relevance to palliative and end-of-life care across the nation. Considering this with realist evaluation I wanted to know if the ICP worked, how it worked, for whom it worked for and in what circumstances. These were the initial questions that guided the inquiry and the formulation of the research questions, which are described within the methodology (Chapter three, pg. 72).

Protocol publication Whilst formulating the research questions I began to write the protocol of this study (Dalkin, Jones et al. 2012). Realist evaluation is a relatively new method of inquiry and thus I found it difficult to know where to start – how do you find programme theories, what sort of data should you collect? The literature offers some exploration of this but putting this into practice is not always easy. Despite the research questions and project moving on somewhat from the publication, it provides a statement of how I started the evaluation. Realist evaluation is very difficult to ‘capture’ at the beginning of the project but I felt this protocol may help others when starting realist evaluations and thus felt it was important to publish.

Flow of the thesis The thesis is divided into nine chapters. Chapters one and two introduce and use existing literature to contextualise the research in terms of palliative and end-of-life care. It also provides a description of the ICP that was implemented in the locality including commissioning aspects and specific tools used (palliative care registration, the traffic light system, the surprise question). Chapter three introduces realism and realist evaluation, provides an understanding of how the findings of the research will be presented and describes the data collection framework. The chapter also provides the reader with the research questions and programme theories that were developed from this. The programme theories are then tested and refined in chapters four to eight through interpretation of the findings alongside existing literature. Each findings chapter begins with an initial programme theory which is refined using data from several sources; a refined programme theory is then presented at the end of each chapter.

Chapter nine provides a discussion of the findings, bringing together all the programme theories to form an overall programme theory of the ICP. This chapter also includes a critical self-appraisal of the research commenting on limitations and future research.

Chapter 1: Key issues in palliative and

–  –  –

This chapter examines some of the key issues that affect palliative and end-of-life care both in the UK and internationally. A description of the history of palliative care is provided with implications for practice. Following this, preferences for end-of-life care in the UK and the societal taboo of death and dying are discussed due to their pertinence and palliative and end-of-life policies addressing these concerns will be explored.

Important philosophies identified in relevant palliative care policies will be highlighted and discussed in further detail. Practicalities of using these philosophies in palliative care and primary care will then be addressed. The diffusion of innovation and Normalisation Process Theory (NPT) literature is then explored to help understand how philosophies from palliative care policy can be translated into practice.



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