When I commenced my nursing course at Barts I could never have imagined where it would take me. Thanks to the support from the Scholarship Fund I have now successfully completed a part-time (aka spare-time!) PhD at the University of Nottingham. The path to completion has been challenging, competing with full-time work commitments and life’s crises, but ultimately rewarding. I remain in a state of disbelief that after all this time and effort it is finished.
The aim of the study was to explore how ‘best interests’ is constructed and enacted when making difficult decisions to persevere with, withhold or withdraw life-sustaining medical treatment in children in the Paediatric Intensive Care Unit (PICU). For the child and family, this situation is unique, the process exceptional and the outcome decisive, whereas for health care professionals, whilst relatively rare, these decisions are not extraordinary.
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. Findings illuminate the difficult reality and complexity of the interplay between parents and healthcare professionals. ‘Best interests’ emerges as an elastic construct used by clinicians and families who are struggling to do their best to validate and justify decisional processes according to diverse and shifting standpoints.
I am truly indebted to the support provided by all who participated and all who supported me in my studies. The challenge now is to focus on disseminating the findings. Consequently, the work has not ended, merely converted to writing for publication and conference presentations. The garden will have to wait a little longer for some attention!