Infants with intestinal failure. Establishing an ethical framework for an emerging therapy

This project will establish a practical ethical framework for decision-making for neonatal intestinal failure. I will identify circumstances in which active therapy might be ethically obligatory, or when it may be appropriate to recommend palliative care. I will also identify situations in which active treatment is ethically acceptable but not obligatory 

I will combine empirical research with normative analysis and reasoning. I will use a critical review of relevant literature to acquire a thorough understanding of the relevant clinical and ethical factors. I will also use semi-structured interviews and thematic analysis to develop a contextualised understanding of the problem as experienced and understood by stakeholders including healthcare professionals, families and children. Coherence will then be sought between the empirical data and normative theory to develop recommendations. 

A draft guidance framework will be developed using a structured online method (DELPHI) to gain consensus among professionals for a usable ethical framework for decision-making in neonatal intestinal failure.