End of life decisions in chronic lung disease

SummaryStaff may be reluctant to discuss end of life decisions in chronic lung disease (CLD) as it is usual for the disease to take a prolonged course and most infants recover to be discharged home without supplemental oxygen. A minority suffer a protracted and very severe illness in spite of treatments. Further intensive care may prolong a distressing death rather than offer any hope of survival. An end of life decision may be made after discussions with parents. Assisted ventilation may be withdrawn, or care redirected to withhold further episodes of assisted ventilation. A lingering death is a risk in infants who have not yet reached the point of dying but whose care has been redirected. Tachypnoea, rib retractions and agitation are distressing for the infant and parents. Palliative care must meet the needs of parents as well as their baby. It includes the legal use of drugs to relieve the infant's distress.