Objectives To improve the ability of clinical staff to recognise end of life in hospital inpatients dying as a result of cancer and heart failure, and to generate new hypotheses for further research.
Methods This mixed-methods study used decision theory as a theoretical basis. It involved a parallel databases-convergent design, incorporating findings from previously published research, with equal priority to study groups and synthesis by triangulation. The individual arms were (1) a retrospective cohort study of 102 patients with cancer and 81 patients with heart failure in an acute trust in the North of England, and(2) a semistructured interview study of 19 healthcare professionals caring for the same patient groups.
Results The synthesis of findings demonstrated areas of agreement, partial agreement, silence and dissonance when comparing the cohort findings with the interview findings. Trajectories of change are identified as associated with poor prognosis in both approaches, but based on different parameters. Management of patients has a significant impact on decision-making. The decision process requires repeated, iterative assessments and may benefit from a multidisciplinary approach. Uncertainty is a defining characteristic of the overall process, and objective parameters only have a limited role in predicting end of life.
Conclusions The role of uncertainty is important as a trigger for discussions and a defined stage in a patient’s illness journey. This is consistent with current approaches to recognising irreversible deterioration in those with serious illness. This study contributes ongoing evidence that these concepts are vital for decision-making.
- heart failure
- clinical decisions
- mixed methods
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Contributors PT oversaw the complete work as part of a PhD thesis. MJJ and DWD were his academic supervisors and guided the process, thereby contributing directly to the research. All authors have contributed to reviewing this manuscript and subsequent revisions.
Funding This study was part of the lead author’s PhD fellowship, which was funded and supervised through Hull York Medical School.
Competing interests None declared.
Patient consent Not required.
Ethics approval Ethical approval was obtained separately for the individual arms of the study, and approved by the Hull and East Riding Ethics Committee (Ref 10/H1304/18; 10/H1304/70). Research governance aspects were addressed by the University Research Governance Committee, in conjunction with PhD supervision and advisory panels. The hosting trust provided R&D approval. The National Information Governance Board provided approval regarding the information governance aspects of the cohort study.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The submitted study references three primary research articles, which are available in separate publications. The original data are no longer available for data sharing, as they have been destroyed in keeping with the data protection stipulations of the original protocol.