TABLE 1.

Examples of clinical situations in which medical futility should be considered

Clinical situation	Examples
Diseases and conditions which can be treated but treatment may be ineffective and futile	Neoplasms Chronic failure of the heart, liver, kidneys Children after subsequent unsuccessful transplantations Advanced spinal muscular atrophy (SMA) Chronically ventilated children (e.g. spinal muscular atrophy) Some metabolic diseases
Diseases and conditions in which premature death is inevitable, although, with the use of advanced medical measures, the child’s health may be relatively satisfactory for a long time	Cystic fibrosis disqualified from transplantation Advanced neuromuscular diseases (e.g. muscular dystrophies) Complex heart defects that cannot be fully corrected, e.g. HLHS
Progressive diseases and conditions in which there is no causal treatment, although survival can be long-term	Advanced metabolic and neurodegenerative diseases
Irreversible diseases and conditions, but not progressive, leading to severe disability; increased risk of premature death results from the tendency to complications, e.g. frequent infections, pneumonia, aspiration	Severe cerebral palsy; congenital, post-traumatic, post-inflammatory and hypoxic damage to the central nervous system
Lethal diseases or conditions in which intensive care should not be undertaken and palliative care is always indicated	Edwards’ syndrome Patau’s syndrome
Congenital anomalies in newborns and/or preterm newborns who due to the nature of the defects, extreme prematurity and/or its complications have no chance to live in an acceptable condition	Potter’s syndrome An extreme form of diaphragmatic hernia with severe, bilateral pulmonary hypoplasia Concomitant severe defects, e.g. of the central nervous system and heart, diaphragmatic hernia, or myelomeningocele Massive central nervous system haemorrhage
Undiagnosed children, despite the use of available diagnostic methods, in whom long-term (for at least several months) observation indicates severe, irreversible functional damage causing suffering to the child	A child with no or minimal contact with the environment, showing no developmental progress, suffering from recurrent seizures and/or spasms
Patients treated in ICUs, in whom therapeutic options have been exhausted and/or a vicious circle of further complications has developed, recovery is most unlikely, and continuation of treatment is associated with suffering of children and their families	A patient treated with ECMO, who had extensive central nervous system haemorrhage A premature infant with grade IV central nervous system haemorrhage and secondary hydrocephalus, with bronchopulmonary dysplasia, persistently ventilated, with a ventriculoperitoneal shunt, developing NEC and shunt infection, followed by sepsis and renal failure