Palliative care in neurodisability and genetic disease — formative SAQs

SAQ 1 (10)

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. [1] [2]

a) Define the core problem in one sentence and state the governing ethical standard. (3 marks) [1]

b) Outline the classification axes you would use and why they change management. (3 marks) [1] [2]

c) List the red flags that would force senior, ethics or court escalation. (2 marks) [1]

d) Document the key elements you would write in the clinical record after the family meeting. (2 marks) [2]

SAQ 2 (10)

The family remains uncertain and a junior colleague asks whether stopping a treatment already started is ethically worse than never starting it. A sibling is present and distressed. [1] [3]

a) Explain the ethical relationship between withholding and withdrawing life-sustaining treatment. (3 marks) [1]

b) Describe how you would structure shared decision-making so parents are not left to decide alone. (3 marks) [1] [2]

c) Outline immediate symptom-control priorities while the decision is being made. (2 marks) [2]

d) Describe age-adapted support for the sibling during this phase. (2 marks) [3]