Because palliative care uptake in adult urology is low, it is not surprising to see that palliative care within pediatric urology remains an area of even more limited exploration, despite the prevalence of various life-limiting and life-threatening pathologies in this patient population. This trend is exacerbated by the substantial differences between pediatric conditions and their adult counterparts, such as malignancies, which traditionally prompt urologists to seek palliative care integration. Notably absent from the scientific literature is substantial documentation bridging palliative care with pediatric urology. Our paper highlights the potential need for palliative care intervention in a variety of pediatric urologic conditions including congenital lower urinary tract obstruction, neurogenic bladder dysfunction, exstrophy-epispadias complex, and congenital bilateral renal agenesis. These conditions often present with a constellation of needs that can be well-served by pediatric palliative care: decision-making that spans the prenatal-neonatal-pediatric periods, intense acute and chronic symptom management, family distress and coping, developing body image/integrity, risk for recurrent hospitalizations and surgeries, and risk of fatal complications. (see Table 1)
Table 1. Opportunities for Palliative Care Integration in Pediatric Urology. CIC = clean intermittent catheterization.
The American Urological Association recently held a 2021-2022 Quality Improvement Summit to identify key themes for opportunities to improve palliative care in urology. These include the focus of the patient’s goals as the driver for the care plan, earlier initiation of palliative care, the importance of team effort, the need for additional palliative care education for urologists, and the recognition that urological palliative care models may vary in different care settings. While this is a step towards greater utilization of palliative care in adult urology, pediatric urology was largely not mentioned at this summit. However, these identified themes and strategies for adult urology can serve as a framework for growing palliative care in pediatric urology.
We hope that this paper will stimulate further discourse and deliberation concerning the integration of palliative care with standard urologic interventions for pediatric patients.
Written by: Oscar Li, BS, Medical Student at the Johns Hopkins University School of Medicine, Baltimore, MD
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