Ritchie, Dawn
(2020)
The Primacy Project: making difficult decisions in the paediatric intensive care unit (PICU).
PhD thesis, University of Nottingham.
Abstract
The predominant end of life scenario within paediatric intensive care units (PICUs) in the developed world results from an active decision to withdraw life sustaining medical treatment. Consideration centres on the problematic concept of whether treatment being provided is no longer in the best interests of the child. The notion of best interests presupposes that there is, theoretically, a definitively right answer to the question “is this intervention in the best interests of the child?” Yet, when making clinical decisions, which have implications for life, quality of life, quality of death, and justification for actions sought, there might not be a single best option. Parents and medical staff are likely to have differing understandings of the child’s condition and prognosis, together with varying interpretations of moral and ethical values and beliefs involved.
Aim of the study
This study aimed to explore how best interests was constructed and enacted when making difficult decisions to persevere with, withhold or withdraw life sustaining medical treatment in children.
Methodology
A qualitative methodology involving a twenty-one month case study of a single PICU was used. Data collection comprised ethnographic approaches of observations of care given to children, documentary analysis, interviews and informal discussions with parents and healthcare professionals directly involved in each of six embedded cases. Data were analysed using thematic analysis providing insight into both parents’ and clinicians’ understanding of the nature and construct of decisional processes.
Findings
Findings reflect the uncertainty and indeterminacy of clinical decision-making. Best interests emerges as an elastic notion used by clinicians and families who are struggling to validate and justify decisional processes in the effort to recognise ‘the best thing to do’ in highly emotional and clinical circumstances. Findings illuminate the complexity and shifting nature of negotiations, which underpin the co-production of decisions about best interests affecting critically ill children. The involvedness of lay and professional stakeholders characteristically results in multiple distinct understandings, permitting a range of reasonable outcomes. The multidimensional nature of shared decision-making, the complex interplay of motives and interests enabled the containment of disagreement and maintenance of relationships. Best interests as a PICU decision-making tool has been revealed to add little to the pre-existing repertoire of medical diagnosis and prognosis, and ethical considerations regarding sanctity and quality of life. Instead, it simply offers a different discursive frame for the same substantive quandaries and decisions of whether to continue to treat or not.
Conclusion
Best interests is presented as a concept that can be identified, managed and used to guide difficult decision making. Yet, it emerges as an elusive, ever-evolving construct generated within the uniqueness of each individual case. Frequently, it is used as a mechanism to validate and justify the reasoning process according to diverse and mutable perspectives amongst the complex network of involved parties. The potential for dispute, with differing understandings, varying values and beliefs is considerable. More remarkable, is that vast majority of best interest determinations are made without overt conflict or recourse to the legal system.
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