title: Adjustment and adaptation in patients with chronic heart failure at the end of life
Creators: name: Irving, Greg
Publisher: name: University of Liverpool Repository
Year: 2015

description: Background: Advanced heart failure is receiving increasing attention from clinicians and policy makers as a major chronic condition associated with poor quality of life in an ageing population. Aim: To explore how we could tailor health interventions to individual patients with advanced heart failure at the end of life. Design: (1) A systematic review of national and international chronic heart failure guidelines using the Appraisal of Guidelines for Research and Evaluation (AGREE II) tool and a data extraction framework based on the holistic needs assessment of the Gold Standards Framework (GSF). (2) A longitudinal qualitative study of 15 patients with New York Heart Association grade 3 or 4 heart failure recruited through two community based heart failure services. Semi-structured interviews were conducted with patients at 3 monthly intervals for 1 year (n= 52 interviews). A refined ‘case-based’ method as described by Griffiths et al. was adopted to identify the ideal type categories of adjustment and adaptation and assess how these categories change over time for each patient. This involved understanding individuals as complex systems, subject to internal and external influences, with the potential for transformation. The analysis drew on the theoretical concept of the emergent present - as developed by Adam - the current period of time when all domains of life have expression. Results: (1) A total of 19 guidelines were included in the review. Across all guidelines the lowest scoring domains were applicability and stakeholder involvement. Qualitative assessment showed that most guidelines adopt a disease-orientated approach to addressing need. In particular, domains on continuity of care and out of hours care were poorly covered. (2) Four distinct patterns of adjustment and adaptation were identified. The largest group was the Stuck and struggling category, which was characterised by participants wanting to move on but being unable to do so. Participants in the integrating group were able to accommodate the problems that they faced from moment to moment despite anticipating an uncertain future. Those in the submerged group were completely immersed in their illness and any expectation of a meaningful future had completely disappeared. The Past reminder group was characterised by a narrative based in the emergent present that was dominated by their experience of previous events. It was shown that some participants transformed from one category to another as a result of the care they received. For others, there was no change over the course of the study. Conclusion: This thesis identifies important differences between the ‘objective’ patient represented in clinical guidelines and the ‘subjective’ experience of the individual. The illness experiences of people living with advanced heart failure are diverse and do not lend themselves to standardised care. This raises important questions for the way knowledge is currently translated into clinical practice. Attending to the emergent present may be a clinically useful approach for supporting health care professionals to tailor care to needs of patients at the end of life.