‘Creating’ impairment?

A new publication by Annie Janvier and Marc Mercurio, which tries to explain why newborn infants, and especially preterm infants, are treated differently to older children and adults. (Janvier A, Mercurio MR: Saving vs creating: perceptions of intensive care at different ages and the potential for injustice. Journal of Perinatology 2013, 33(5):333-335.) They compare 2 cases of a very preterm infant, just born, and a critically ill older child who has developed a serious infection. Although the older child has a lower predicted survival and similar long term outcomes, the initial approach to therapy, just about everywhere in the developed world, is routine institution of intensive care for the older child, but a selective approach for the very preterm baby whose life is considered optional.  This is very much what Annie and I found in our questionnaire study (Janvier A, Leblanc I, Barrington KJ: Nobody likes premies: the relative value of patients’ lives. J Perinatol 2008, 28(12):821-826). which Annie has since replicated around the world.

In this new publication the authors try to explain why this might be, one of their suggestions, and I think they are on to something here, is that the older child has been home with a family at least for a while, and his/her illness is blamed on the germ causing the infection. The preterm baby in contrast is newly minted, has never known anything but being in the hospital and when there are complications or long term impairments the caregivers feel guilty, as if they ‘created’ the problems, rather than saving the older child.

As they rightly point out this is not  necessarily rational, in both cases the infant would be dead if it were not for the intensive care unit, in both cases the therapies have risks and benefits, and in both cases the teams are trying to get the best outcome they can. But nevertheless it does appear to be one of the reasons for differential treatment, indeed one that has been expressed by some of the respondents of another study that Annie has been doing with Amélie Dupont-Thibodeau, a neonatologist and PhD student. Presented as an abstract at a previous PAS meeting, the theme of feeling responsible for the impairments that some preterm infants experience came through.

Its hard to keep up with all of Annie’s publications, but another article that she has just published with Steve Leuthner addresses what is almost the opposite problem, why is it sometimes so difficult to withdraw active interventions?  (Janvier A, Leuthner SR: Chronic Patients, Burdensome Interventions and the Vietnam Analogy. Acta Paediatrica 2013). They refer to the situation that many of us have dealt with, the newborn infant who has already had multiple complications during their stay in the NICU, who has always been technology dependent, and who now develops another very serious complication that might well lead to their death. After so much emotional investment in a baby, so many interventions, much discomfort, surgery, ventilation, TPN etc etc, to pull out seems to be more difficult than not starting at all. The analogy is to the Vietnam war, where after so many years of battle, so many young men killed, so many enemy combatants and innocent civilians destroyed, the idea of pulling out was delayed and delayed, maybe just one more battle, one more intensification, would finally prove successful.

This is another normal human response I think, how to counter it? (If we should?) I think this will always be the case, I can’t imagine it will ever be easy to limit curative interventions in such a case, but sometimes there is unintended suffering (of everyone involved) prior to a delayed death in such cases; Annie and Steve talk about the need to talk openly about death, which is fine as far as it goes, but does that imply that we talk about death even when things are going well, or when a baby has just recovered from a complication? I don’t suppose that is what they mean, as we also need to be able to talk positively and support the reasonable and rational hopes of parents. I think that already caregivers often temper their interactions with parents, with provisos and ‘things are going well today, but you never know about tomorrow there could be..’ ‘ we aren’t out of the woods yet you know’. Finding the right balance, to be hopeful yet realistic, to be positive but not Panglossian, to be ready to reassess the situation without always crushing the spirits of the parents, is the real challenge of our daily interactions with our families.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Advocating for impaired children and tagged . Bookmark the permalink.

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