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 4 of my response.
Position Statements are supposed to be based on systematic reviews of the literature. In contrast, this literature review is highly selective. For a position statement which has as its subject ethical decision making, the failure to refer to the several of the most widely cited articles in perinatal ethical decision making produced, in Canada, over the past decade is disturbing. These articles clearly demonstrate the prejudice against very preterm infants that is so well illustrated by this position statement, but are ignored.
The failure to adequately discuss quality of life studies is even more disturbing. There is a backhanded dismissal of this entire literature with the following statement “A few small studies have followed infants < 1000 grams birthweight through to adolescence and adulthood, but these may not be representative of the wider population. The individuals followed have … no differences in self-esteem or self-perceived health-related quality of life” This is an incredible dismissal of a large body of work, largely initiated by Dr Saroj Saigal in Canada, now numbering about 30 articles, many of which are regional or population based. These articles show that very preterm infants have a quality of life similar to infants born at term. Indeed systematic review of that literature shows that there is no effect of gestational age on quality of life.
As there is no effect of GA on quality of life, then what is the ethical justification for including GA in decision making? This should have been explicitly addressed by this statement.
There are, in contrast, several bizarre references which seem to be of no relevance to ethical decision making. As one example there is an appreciative quotation of a study of data from a Norwegian linked database study of infants born between 1967 and 1988 which documented that the mortality of ex very preterm infants, born between 22 and 27 weeks gestation, when they reach ages between 1 and 5 yrs, was 1.71%, compared to 0.19% in infants born at term. What possible relevance does this have to ethical decision making in the perinatal period? The mortality in adolescence of post-term babies was also significantly increased in that cohort, does this mean we should reconsider active intervention for post-term infants also?
Any position statement should use the totality of the published evidence, using recently published systematic reviews when they are of good quality, and performing complete and adequate literature searches otherwise. How publications are to be selected should be explicitly decided at the outset, and explained in the document. Those are exactly the standards required by the GRADE process.
A position statement from a body of physicians for vulnerable children needs to, in every respect, advocate for those vulnerable babies and their families.