Palliative care in neurodisability and genetic disease — branching viva

Opening question

A nine-year-old with severe spastic quadriplegic cerebral palsy, epilepsy and recurrent aspiration is admitted for the third PICU stay this year. There is no documented advance care plan; parents are exhausted and a younger sibling is missing school to help at home. Give the one-sentence definition and the governing ethical standard. [1]

Branch 1 — classification and red flags

Classify the situation using the major axes for this topic and name the red flags that force escalation. [1][2]

Branch 2 — stepwise shared decision-making

Walk through the bedside pathway from recognition to a documented plan, including how you make a recommendation rather than an open menu. [1]

Branch 3 — contested disagreement

The family disagrees with the team. Outline second opinion, clinical ethics and court pathways while continuing comfort care. [1][2]

Branch 4 — family and sibling support

Explain how you support parents and siblings through the decision and into bereavement care. [3]