Infants with Intestinal Failure

: Establishing an ethical Framework for an emerging therapy

Abstract

In this thesis I sought to explore issues related to decision making for neonates with intestinal failure (IF), with the intention of providing recommendations that could lead to a practical ethical framework to assist clinicians and families. To ensure that these recommendations are relevant, implementable in usual clinical conditions and are normatively secure, I employed an empirical ethics methodology, namely Symbiotic Empirical Ethics.
Neonatologists, paediatric surgeons and gastroenterologists may all be involved in the care of this patient group. I began by determining that there was both intra- and inter- specialty variation in professionals’ approach to the recommendation of active or palliative care in any given scenario. I went on to establish the clinical outcomes in the modern era by undertaking a systematic review of survival, neurodevelopmental impact and quality of life for neonates with IF. I then carried out a qualitative study, exploring both the values and beliefs of doctors and parents that contributed to decision-making, and the experience of living with IF, either as a child or parent.
I went on to integrate the empirical findings with normative theory, some identified in advance of the empirical work, but others highlighted by the empirical. I principally focussed on the moral status of neonates, neonatal interests and the limits of parental obligation. I then explored decision-making, particularly the concept and limits of shared decision-making.
Finally, I concluded by proposing an approach based on the zone of parental discretion, using this as a structure to define when parental opinion should be determinative and when doctors should decide. Using the information from my empirical work, I made suggestions as to how this could be defined and operationalised for neonatal IF.
 

Date of Award	17 Jun 2025
Original language	English
Awarding Institution	University of Bristol
Sponsors	Wellcome Trust
Supervisor	Zuzana Deans (Supervisor), Lucy Beasant (Supervisor) & Jonathan C S Ives (Supervisor)