Aims To highlight the successful delivery of palliative care along-side active treatment of paediatric end stage renal failure (ESRF).
Methods We present three cases where ESRF management occurred in parallel with palliative care.
Results Case 1: A 9 year old male with Joubert’s Syndrome presented with deteriorating renal function. During active management invasive procedures were progressively more stressful. The benefits of invasive treatment versus his distress were considered. Ultimately an integrated conservative approach with nephrology and palliative care was adopted featuring home reviews, planned breaks with quality family time and ongoing school. Eighteen months following presentation he died peacefully.
Case 2: A 10 day old baby presented with renal failure secondary to congenital nephrotic syndrome. Peritoneal dialysis was commenced early as he remained anuric. Dialysis was challenging with poor cardiac function, episodes of fluid overload and peritonitis. After four months, further peritonitis resulted in ventilation and haemofiltration with limited vascular access. After multi-professional deliberation, active management was re-orientated to end of life care with hospice transfer and compassionate extubation, where he died nine days later.
Case 3: A 14 year old with restrictive cardiomyopathy, second cardiac transplant and significant kidney injury resulting in ESRF was transferred to our unit for ongoing care. Severe myopathy, feed intolerance, poor wound healing and labile blood pressure posed challenges to long-term dialysis. Active treatment continued with early input from palliative care, who initiated a parallel pathway involving hospice supports with focus on quality of life. After a prolonged admission with discharge imminent, focus on management remains integrated with renal replacement therapy (RRT) and palliative care.
Conclusions Involvement of palliative services in paediatric ESRF is generally limited to infants who do not commence active RRT. However, with increasing complex co-morbidities in paediatrics, RRT remains challenging and can pose a significant quality of life burden. We have demonstrated an integrated management approach in 3 cases with early referral to palliative care allowing holistic care to be delivered alongside active ESRF treatment. We propose that parallel palliative care collaboration be considered in management of all children with ESRF, particularly those with co-morbidities.
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