Premature death or wrongful death?

A headline in the Daily Mail from yesterday highlights the cost of over treatment for extremely premature and marginally viable infants.

    “Parents cause infant to suffer by forcing doctors to give futile treatment”.

Despite doctors counselling a set of parents that their 22 week gestation premature infant (born 4 ½ months early) had virtually no chance of survival, the parents insisted that Warren* be actively resuscitated and treated in intensive care and threatened legal action if doctors refused. Warren received chest compressions in the delivery room and was put on a breathing machine. He developed holes in his fragile lung and had multiple drain tubes inserted into his chest. Warren’s thin skin tore and broke even with gentle handling, and he developed patches of skin loss, like second degree burns, on his trunk and limbs. He developed bleeding in the centre of his brain, and on the 5th day of life perforated his bowel from infection. He died the following day. Meanwhile, 2 infants born prematurely in the same hospital were unable to be accommodated in intensive care because of lack of beds and had to be transferred to another hospital 1 hour away. One of those infants became unstable during the ambulance transfer and developed additional complications. Lawyers representing Warren are now considering legal action against the doctors and against his parents.

But of course, that wasn’t the real headline or case in the Daily Mail, and legal action such as that described is not likely to take place.

The actual story was of a 21 week and 5 day old infant who was not resuscitated after birth and who died in his mother’s arms at two hours of age. The Daily Mail reported favourably on his mother’s campaign to force a change in the UK guidelines for the treatment of premature infants. His mother was frustrated by doctors refusal to treat her infant. The British Association of Perinatal Medicine framework for the management of extremely premature infants currently suggests that standard practice is not to resuscitate infants born before 23 weeks gestation. The influential Nuffield Council on Bioethics report proposed that before 22 weeks gestation resuscitation should not be provided except in the context of a scientific trial. 

One of the reasons why the mother cited in the real Daily Mail article was so aggrieved that her infant was denied treatment is that there have been reports of infants surviving before 22 weeks. For example there were multiple reports of infant Amelia a year or two ago, a 280g ‘21 week and 6 day gestation’ infant in Florida who survived to be discharged from hospital (she is now 2 years old).

There are problems with relying on data of this nature. Media reports can be misleading. It appears that actually the infant from Florida was born at the equivalent of 23 weeks and 6 days gestation, but her gestation was misquoted because of an artefact in the way gestational age is calculated. Gestational age can also be inaccurate, depending on how it is measured.

But the other problem with such media reports of exceptional survival at extremely premature gestational ages is that they completely ignore the very large numbers of stories such as the one that I presented at the start of this story. While survival may be possible below 22 weeks gestation, for such survival to occur would require active treatment of a very large number of infants. Far more infants would suffer and die after unsuccessful resuscitation and intensive care than would survive. And, as alluded to above, this has significant effects on the availability of the limited resource of intensive care.

The death of a premature infant is devastating to mothers and families. When that infant is born only days before the point at which their life could be saved it is understandable that parents feel frustrated and wish that something more could be done. It is vital that parents are able to speak to experienced paediatricians and obstetricians so that they are not left feeling abandoned or with the idea that their infant’s rights have been ignored. But as hard as it may be to accept, there are limits to the capacities of medicine to save life. And there are limits to what parents can request for their children. There are times when, both for the sake of the infant, and for the sake of other children, that treatment must not be provided.

*This name and the case are fictional.

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