Paediatric severe neurological impairment: is “poor prognosis” a poor choice of words?

Takeaway

• In discussing paediatric patients with severe neurological impairment, clinicians should avoid using the phrase “poor prognosis”, argue the authors of this op-ed.

Why this matters

• They call for restraint given the paucity of data and limited certainty level for specific trajectories in this population.

Key points

• These authors give as an example a baby born prematurely at 23 weeks who is still on ventilation, tube feeding, and has global encephalomalacia from grade 4 bilateral intraventricular haemorrhages.
  • In these situations, clinicians should avoid conflating profound disability with “lethal” or “not compatible with life”, these authors say.
  • Such conditions are, in fact, often compatible with life.
• They write that using facile phrasing such as “poor prognosis” is self-fulfilling for mortality if clinicians make paternalistic, unilateral declarations and short-circuit discussions about the child’s experience and the family’s values.
• Use of “poor” is “value based” and imprecise, they say, and can reflect the clinician’s personal bias, culture, and moral views, which might contrast with the family’s.
  • It implies that a life with that condition is not worth living, and disregards the potential for meaningful relationships the child could have with family.
  • It can also derail opportunities for families to be fully informed.
• Clinicians should strive to use specific, precise language about the condition, survival rates, expectations for support (acute and lifelong), and other factors, these authors argue.