«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»
The studies reported leave a clear gap in knowledge: what actually works, for whom and in what circumstances? Thus, this thesis will investigate whether a palliative care ICP using care planning principles for those with life limiting illnesses leads to positive outcomes, how, for whom and in what circumstances.
Currently, there is no specific way to provide palliative or end-of-life care in the UK.
Studies focusing on palliative care interventions are limited and difficult to identify in the literature and thus an evaluation providing information on context, underlying mechanisms and related outcomes is warranted. This is important not only to policy makers and health care professionals in order to deliver a high standard of care, but also to patients, who wish to die in their current place of residency.
ICPs in palliative care provide promising results in terms of translating policy into practice. They indicate that they increase proactive care, patient centeredness and shared decision making which results in a good death that is often in the patient’s place of choice. However, the complexity of these multicomponent interventions means that it is not clear which tool worked best for whom (for example, professionals, patients, primary or secondary care, care homes) and in what circumstances (type of illness, timing of patient identification as terminal prior to death). Furthermore, the assumptions made in most of these studies between intervention strategies and outcomes pose a significant challenge to implementation in other contexts.
Chapter Summary The ICP has been developed in line with national and local policy that identifies palliative and end-of-life care as a local regional and national priority and continues to develop (Department of Health 2008, The National Council for Palliative Care 2009, The National Gold Standards Framework Centre 2009, NHS North East 2012). It aims to translate national policy and guidelines about proactive care, patient centred care and shared decision making into practice.
The facets of the ICP have been described and issues with funding and changes in commissioning have been discussed. The changes made in the re-commissioning of services has resulted in the ICP functioning differently now in comparison to when it was initially implemented. However, use of the core tools (palliative care registration, ACP, anticipatory medication use) that are based on proactive care, patient centred care and shared decision making have remained unchanged despite this, as recommended by regional and national policy. Publication of regional policy, Deciding Right (NHS North East 2012), has the same underlying principles as the ICP and therefore it should be an enforcing factor to the proper use of the interventions of the ICP, including ACP.
However, undoubtedly, these changes will all have had an effect on the ICP, the way it functions, those who implement it and those who are in receipt of care. Yet, development of an ICP is a dynamic process, which is likely to be affected by change which can come from local or national policy, or due to economic factors, especially in the current economic climate which is resulting in significant changes to the NHS.
The introduction of Deciding Right (NHS North East 2012) has meant that some of the documentation used in the ICP has changed (the advance care plan form has become the advance statement, with ACP now acknowledged as an umbrella term for a process which results in several formal outcomes of preference discussions in the form of documents). Workshops have been run in the locality to further explain and implement Deciding Right (NHS North East 2012) which has the same underlying principles as the ICP.
Individual case studies from the pilot before limited re-commissioning have shown that the ICP improved patient experience, avoided hospital admissions in individual cases, informed the OOH GPs’ decision making, and facilitated patients’ wishes around endof-life care decisions (Locality North East Clinical Commissioning Group 2012).
However, the ICP required more formal evaluation, investigating if the ICP worked, how it worked and in what circumstances.
The complexity highlighted in this chapter means that the ICP does not lend itself easily to a quasi-experimental design, and indeed, the literature has demonstrated the limitations of such designs to evaluate multifactorial ICPs. The next chapter will explain the methodology used to evaluate such a complex ICP, realist evaluation. The principles of realism, realist evaluation and realist inquiry will be explored alongside the data collection tools. The research question will be formulated which will aid in the design of the programme theories that will be tested in order to guide the evaluation.
This chapter will begin with an exploration of realism that will address questions of ontology, epistemology and methodology. An introduction to realist evaluation will then be provided with the realist logic of inquiry explained, to help understand how the ICP will be evaluated in terms of Context, Mechanism and Outcome Configurations (CMOCs). The research question will be stated which prompted the development of programme theories to be tested through data collection. Following this, a data collection and analysis framework will be presented which has been developed specifically to meet the needs of this research, using both quantitative and qualitative data tools.
Policy, such as the End of Life Care Strategy (Department of Health 2008) is delivered through active social programmes, such as the ICP, to active subjects (health care professionals and patients) and this has major implications for research methodology. In clinical trials human volition is regarded as a contaminator and the aim is to minimise its impact, hence the use of placebos, blinding and randomisation. However, social programmes work through the reasoning of subjects and knowledge of that reasoning is integral to understanding a programme’s outcomes. Since the ICP is such a complex system that includes many people providing and receiving services, it must be investigated using a methodology that embraces human volition, as well as this complexity, rather than minimises it.
Realism Realism is not a research method but a methodological orientation; an approach to constructing and selecting research methods (Pawson, Greenhalgh et al. 2005). It is a logic of investigation that is grounded in the philosophy of science and social science (Bhaskar 1978, Harre 1978, Bhaskar 1979, Putnam and Conant 1990, Collier 1994). In these writings, realism is considered as the principal post-positivist perspective and provides an explanation of phenomena that sits between empiricist and constructivist accounts of scientific explanation (Pawson 2006). Realism regards social change as transformational as opposed to linear, it values both qualitative and quantitative research methods and is not nomothetic or idiographic (Sayer 1992, Archer 1995, Sayer 2000).
Realism is a methodological orientation due to its understanding of causation, the constitution of the social world, and the stratification of social reality (Pawson 2006), all of which are questions of ontology, epistemology and methodology and are developed further below.
There are two streams of realism in social science: critical realism (Archer, Bhaskar et al. 1998, Bhaskar 2002) and empirical realism (Pawson 1989, Hedstom and Swedberg 1998, Williams 2000, Carter and New 2004), also known as scientific realism, emergent realism, analytic realism, ‘realism pane e burro’ and middle-range realism (Pawson 2006), although no consistent nomenclature has been assigned to this school of thought.
It shall be referred to as empirical realism for the purpose of this thesis. The schism between critical realism and empirical realism is due to the open systems nature of social explanation. Critical realism assumes that there will always be an excess of explanatory possibilities, some of which will be mistaken (Pawson 2006). It is therefore the primary task of the critical realist to be critical of the lay thought and actions that lie behind false explanations (Bhaskar 2002). Empirical realism assumes that a researcher should still aim to decide between alternative explanations, despite the knowledge that further explanatory potentials remain without investigation in the open systems in which people live (Pawson 2006). Furthermore, empirical realism suggests that classic apparatus, including clear hypothesis making, critical comparisons and empirical patterns, are of use in research underpinned by realism. Empirical realism is embraced by realistic evaluation, the methodology used in this study.
Questions of ontology, epistemology and methodology in realism Ontology questions the form and nature of reality and therefore what can be known about it (Guba and Lincoln 1994). Realism suggests that there is a real world within which people interact and that individuals construct meaning in this world. Whilst theories, concepts and perspectives may generate a valid understanding of a phenomena, they cannot and do not exhaust it, as all knowledge is contextual and partial; other conceptual schemas and perspectives are always possible and theories, concepts and findings are grounded in values and perspectives (Altheide and Johnson 2011). For example, whilst death is an inescapable reality, its meaning is mediated by individuals’ understanding and experiences of it. Two separate individuals who experience the death of a grandparent may have differing reactions due to context, resources and reasoning.
Additionally the way in which an individual reacts to their grandmother’s death may be very different to the way they react to a sibling’s death. Therefore a theory on relatives’ experiences of a loved one’s death will generate understanding of this topic, but is not definitive as all knowledge is contextual and partial. The current literature focusing on palliative care ICP evaluations generates understanding but does not acknowledge that it is contextual, or that the findings are grounded in values and perspectives. For example, Smith (2012) states that a holistic heart failure service increases choice for palliative care patients. However, this does not mean that the same holistic heart failure service implemented in another locality would achieve the same outcomes. The findings may be different due to the differing values and perspectives of those implementing and receiving the service.
From a societal or organisational perspective, death is a process that needs to be managed and the ICP, a complex system in itself, is one way of implementing this management. Realism suggests that regularities in the ICP are attributable to the underlying mechanism that is constituted by people’s reasoning and the resources they have in a specific context (Pawson and Tilley 1997). Realists state that the embeddedness of all human action within a wider range of social processes is the stratified nature of social reality (Pawson and Tilley 1997). Even the most repetitive and commonplace actions are only understandable because they contain innate assumptions about a wider set of rules and institutions (Pawson and Tilley 1997). For example, the act of visiting a GP is routinely accepted as what most people would do if they felt unwell for a significant period of time. However, this is only because it is known that visiting the GP is part of a wider institution (the NHS) within which Hippocratic rules dictate that efforts are deployed to manage patients’ illnesses. The causal power between visiting the GP and managing the illness does not reside in the GP themselves or the drugs they prescribe but in the organisational structures which they form. One action leads to another due to their accepted place in the whole (Pawson and Tilley 1997); the patient makes an appointment with the GP, the GP prescribes medication if appropriate, the pharmacist dispenses the drug and the patient adheres to the drug regime. Therefore human action and understanding is not linear and is understood in terms of its location within different layers of social reality. This explains why realists shun the secessionist view of causation (Pawson and Tilley 1997).