Wednesday, April 8, 2015

A Fork In The Road: Two Cases, Two Families, and Divergent Paths

By: Joann Schulte  DO, MPH; Editorial Board Member

      “It depends.” That's an answer you've probably heard from your parents growing up and is a phrase you've used with your own children. The circumstances of what you got to do as an adolescent or what you permit your children to do figure into the decisions made.
      “It depends” applies in medical ethical dilemmas as well. How the impact of family circumstances can shape medical decision making is well illustrated in the Ethics Rounds article “
Two babies, same prognosis, different parental choices” presented this month in Pediatrics. Antommaria et al. (doi: 10.1542/peds.2013-4044) described different decisions in the same NICU concerning two different families and their respective infants with the same medical problem. Both families had premature infants born with esophageal atresia with tracheoesophageal fistula. Each infant failed extubation and would have been maintained on long-term mechanical ventilation for months or years. In both cases, the NICU staff recommended long-term mechanical ventilation. One infant was born at 33 weeks to an Amish family who declined additional care and requested only comfort care. The other infant was a twin born at 31 weeks whose postoperative repair was complicated by cardiac tamponade and an unclear neuro-developmental future. That family agreed with the NICU staff and accepted the recommendation for long-term ventilation.
      The authors describe the NICU staff as being troubled by the different decisions made by parents in two different babies and reviewed the circumstances of the two families. The ethics experts discussed circumstances of the Amish family in detail, including the fact that the members of the religion rely on community support for care of such children and live in circumstances where electricity for a ventilator is not available. The other family decided to accept the recommendation of the NICU and agreed to the mechanical ventilation of their child for a prolonged period with no guaranteed outcome. 
       This Ethics Rounds article deals with the issues from the perspectives of the NICU staff.  Ethics issues and decision making are increasingly becoming a joint venture between the families involved and the NICU staff.   I’d like to know more about how families cope with the long-term, chronic consequences they face in caring for a child who is heavily dependent on medical technology.  What’s the impact on a marriage or on other children?  The issues of medical technology raise ethical issues about care that have to be re-evaluated periodically.  This ethics article  about two preterm infants with the same condition is an important  step in thinking about this  issue.

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