Policy- and evidence-based guidelines have highlighted the need for improved palliative and end-of-life care. However, there is still evidence of individuals dying undignified deaths with little pain control, therefore inflicting unnecessary suffering. New commissioning powers have enabled a 2-year pilot of an innovative integrated care pathway (ICP) designed to improve arrangements for individuals with life-limiting illnesses requiring palliative care. A novel feature of the ICP is its focus on palliative care over the last 6 months of life, aiming to intervene early to prepare for and ensure a good death. What is not known is if this pathway works, how it works and who it works for.
Methods and analysis
A realist evaluation and a complex analytical framework will investigate and discover context, mechanism and outcome conjectures and configurations of the ICP and thus facilitate exploration of how it works and who it works for. A mixed methods approach will be used with small sample sizes to capture the breadth of the ICP. Phase 1 will identify if the pathway works through analysis of NHS Morbidity Information Query and Export Syntax data, locality Death Audit data and the Quality of Dying and Death Questionnaire. Phase 2 employs soft systems methodology with data from focus groups with health professionals to identify how the pathway works. Phase 3 uses the Miller Behavioural Style Scale and interviews with palliative care patients and bereaved relatives to analyse communication in palliative care.
Ethics and dissemination
Ethical approval has been granted from the NHS local ethics committee (REC reference number: 11/NE/0318). Research & Development approval has been gained from four different trusts, and relevant voluntary organisations and the local council have been informed about the research. This protocol illustrates the complexity inherent in evaluating a palliative care ICP. Identification of whether the pathway works, how it works and who it works for will be beneficial to all practices and other care providers involved as it will give objective data on the impact of the ICP. Results will be disseminated throughout the study for continuous quality improvement of the ICP. Outcomes from each data collection phase will be disseminated separately if analysis warrants it; all data collection will be utilised in the realist evaluation. The research provides a potential for the dissemination of the pathway to other localities through the transferable knowledge it will generate, from its focus on the contexts that are crucial for successful implementation, the mechanisms that facilitate implementation and the outcomes achieved.
This article is a protocol of a realist evaluation of a palliative care ICP, which was developed in Primary Care by health practitioners. The ICP itself uses elements of long-term chronic illness care in order to provide holistic, supportive, high-quality palliative care. The focus of the article is to detail how the ICP will be evaluated, using a variety of data collection tools, which will identify contexts and mechanisms that lead to improved outcomes, thus taking the main focus away from just the outcomes alone. The identification of contexts and mechanisms for improved outcomes is known as realist evaluation and will provide a better knowledge of the essential conditions of effectiveness when the ICP is implemented in other localities.
The key aim of this article is to detail the creation of a complex realist evaluation, which utilises a unique and varied methodological framework. It is hoped that through this article, others will understand the groundwork needed to set up and execute a realist evaluation.
Strengths and limitations of this study
The protocol details a complex evaluation of a unique palliative care ICP using a new and innovative methodology: realist evaluation.
Some may perceive the small sample sizes in the qualitative sections of the study as a weakness. However, the aim of the study is not to find a robust causal mechanism; this would be premature with an ICP in its infancy. The aim is to unpack the contexts and mechanisms that work in certain circumstances, from this conditions crucial for effectiveness can be highlighted, which are essential for implementation of the ICP in other localities.
The ICP involves 15 general practitioner practices, which collectively care for 80 300 patients. The study described will use Morbidity Information Query and Export Syntax and Death Audit data from all 15 practices and will conduct the other sections of research within selected practices, both rural and suburban.
Finally, palliative care is commonly misunderstood in the literature and in the field. This paper addresses this confusion and fills a gap in the literature.