Background Our tertiary paediatric nephrology unit was recently challenged by the different circumstances of two children with multiple comorbidities and complex backgrounds who were offered renal replacement therapy. The ethical tensions arose because these treatments may not have been accessible to such children in the past. An ethics workshop for all members of our multidisciplinary team was held to explore the changing perceptions amongst parents and staff on the indications for renal replacement therapy, and the constraints this presents.
Cases presenting an ethical challenge The first child has CHARGE syndrome, developmental delay and significant neurological disability, who was commenced on peritoneal dialysis, with a view to possible future transplantation. The second case was a child with mitochondrial cytopathy and heart failure, who was offered peritoneal dialysis as part of his palliative care pathway for symptom relief.
Until recently, renal replacement therapy was considered as a continuum. A child would be offered haemodialysis or peritoneal dialysis only if there was scope for future kidney transplantation, as these modalities have risks and complications. The gold standard in renal replacement is a living-related kidney transplant. If this is planned, however, the child is simultaneously placed on the deceased donor list as a potential recipient. This is of significance if the parent/relative is not a suitable match. As children are prioritised above adults due to the allocation algorithm, should this still happen in children with very complex backgrounds and severe disability?
In addition, renal replacement is considered a ‘life-sustaining’ treatment, but may be used as symptom relief as an aspect of a palliative care package, despite the intensity of provision and cost. Due to dialysis complications, and effects on family as well as quality of life, the decision to embark on this route is not straightforward.
Conclusion The multi-professional team all felt comfortable and confident in renal replacement as a palliation tool, but not ad infinitum. The collective views expressed were to practise within an agreed clinical time course and legal framework, taking into account the child’s best interests, quality of life and family views.
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