Towards the end of last year the Canadian Pediatric Society published a new ‘position statement’. These are official proclamations of the society, supposedly based on the best available evidence to guide practice, and which become de facto standards of care. This particular one ‘Counselling and management for anticipated extremely preterm birth’ presented an opportunity to update a 20 year old statement. This is part 6 of my response.
A common factor in many position statements, including this one from the CPS, is the calculation of ‘survival without impairment’ or ‘survival without severe impairment’ or ‘intact survival’.
I think presenting outcome data in this way is a serious error. A baby who does not survive and one who survives with impairments, are not equivalent. They are not equivalent in their impact on families, and to suggest that intensive care is warranted or not because a combination of death and impairments is at a certain level is quite inappropriate. For one thing, it immediately presupposes that the only worthwhile outcome is a surviving infant who has no impairments. Also, a predicted 33% survival without impairment, for example, is very different if that is a result of 60% of the babies dying and 7% having an impairment, compared to 7% dying and 60% surviving with impairment.
Possible mortality, and possible impairments, should not be added together as if they were equivalent, they should be presented as separate issues to the future parents.
I think the following phrases are likely to have a very different impact.
1. 2/3 of babies who start out like this either die or have a significant long term impairment.
2. About half of the babies will survive: among the babies that survive about 1 in 5 has very serious long term difficulties, about another 1 in 5 to 1 has moderately serious long term difficulties, and 3 in 5 of survivors have mild or no long term impairments.
If you were to counsel a mother whose baby is about to be born extremely prematurely and was thought to have about a 50:50 chance of survival then you could say either of those two things, they both would be accurate, but they convey different information. The reactions to those two phrases may be different; it has become abundantly clear that the choices that patients make are heavily affected by the way information is presented to them, and even to the order in which information is presented, even when exactly the same information is given. Marlyse Haward and her colleagues showed that stating ‘50% survive’ and ‘50% die’ leads to different decisions being made. There is a very extensive literature on these influences outside of the perinatal decision making field, we need to use that literature to teach us how to present our babies’ outcomes. But I am sure that conflating death and disability does not help parents’ understanding or our ability to make the best decisions for the babies.