Table 1

Summary of key prognostic variables for each case scenario

Applicable to all cases:
  • Approximately 6 months to 18 months of age—‘an infant’.

  • Hospitalised and reliant on mechanical ventilation and artificial nutrition and hydration (except for case 6).

  • No hope of improvement from this level of disability.

  • Likely survival at this level of disability for a few years if treatment continued.

  • All described in the survey in lay language with more complete descriptions of the illness and its consequences for the infant.

Unaware: based on Alfie EvansNo cognitionNo sufferingNo pleasure
Possible Awareness: based on Charlie GardPossible awarenessPossible sufferingNo pleasure
Minimal CognitionAware
No interaction
Low sufferingMild pleasures
Locked In: based on baby MBAware
Cognitively intact but unable to communicate or interact due to paralysis
Medium sufferingMedium pleasures
Possible Relational CapacityAware
Basic interaction
Very basic relationships
Small chance of future communication
Low sufferingMedium pleasures
Significant Burden: based on Charlotte WyattAware
Severe cognitive impairment—basic interaction, no relationships or communication
Moderate-severe sufferingMild pleasures
  • These are not intended to capture the full details of each case—the complete survey can be viewed in online supplementary appendix F.