Paliatívna medicína a liečba bolesti 2e/2025
When the prognosis we have made does not come true
Paediatric palliative home care increasingly cares for children with rare non-oncological diagnoses and uncertain prognosis, where predicting long-term disease progression is particularly challenging. We present a case report of a child with Aicardi–Goutières syndrome, whose prognosis was assessed by the hospital team as very unfavourable, recommending a focus on comfort care. After discharge to home palliative care, the child achieved clinical stabilisation with a relatively good prognosis quo ad vitam, allowing a transition to life-prolonging treatment. The case highlights the importance of sensitive communication regarding the child‘s prognostic uncertainty and the need for setting shortterm treatment goals based on the child‘s evolving condition together with parents. An incorrectly estimated or inadequately communicated prognosis can indeed lead to parental loss of trust, influence treatment decisions, and ultimately worsen the child‘s quality of life.
Keywords: paediatric palliative home care, prognostic uncertainty, treatment goal setting, Aicardi–Goutières syndrome, parent communication, accompaniment
