K Wu. NEJM 2024; 391; 2288-2289. Well Known to Us.

This commentary focuses on the personal experience of being an hospital-based physician tasked with taking care of chronically-ill complex and neurologically-compromised children through recurrent and prolonged admissions.

An excerpt:

Teetering on the precipice of death at every admission, they are a testament to how far medicine has come in keeping people alive — and how far it still has to go in treating their underlying conditions. Having realistic conversations about long-term outcomes and palliative care for these patients remains difficult, with pediatricians afraid of disrupting fragile relationships with parents who have endured so much.¹

With increasing numbers of such children being admitted to PICUs and limited expansion of capacity,^2-4 questions have been raised about the value and necessity of the care provided to them — not in terms of their condition in isolation, but in terms of who else is being deprived of care. Patients with complex, chronic, life-limiting, multiorgan conditions are often described as “well known to us,” but they’re also called “bed blockers” — a label reflecting one answer to the uncomfortable ethical question of which patients are most deserving of limited resources.⁵ …

Often all I could do was bear witness to their sickness and wellness, their deterioration and recovery, again and again. But in their short lives filled with suffering and struggle and a constant parade of caregivers, I was their pediatrician, and I had become well known to them.

Related blog post: Navigating Difficult Conversations in Children’s GI Healthcare