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Counselling variation among physicians regarding intestinal transplant for short bowel syndrome

Christy L Cummings1, Karen A Diefenbach2, Mark R Mercurio3

  • 1Division of Newborn Medicine, Boston Children's Hospital, Harvard School of Medicine, Boston, Massachusetts, USA.

Journal of Medical Ethics
|August 23, 2013
PubMed

Insights

Physicians find intestinal transplant ethically optional for infants with short bowel syndrome (SBS), but few offer it. This practice variation highlights the need for clear guidelines and survival data for informed parental decisions.

Area of Science:

  • Pediatric Surgery
  • Neonatology
  • Transplantation Medicine

Background:

  • Intestinal transplantation is an emerging therapy for infants with severe short bowel syndrome (SBS).
  • Lack of long-term data and established guidelines contributes to practice variations.

Purpose of the Study:

  • To evaluate physician attitudes and counseling practices for infant intestinal transplantation in SBS.
  • To determine if counseling and management differ by subspecialty or treatment center.

Main Methods:

  • A national survey of pediatric surgeons and neonatologists was conducted.
  • Data were analyzed based on physician subspecialty and transplant center status.

Main Results:

  • 433 physicians responded; 13.2% practiced at transplant centers.
  • Most physicians deemed intestinal transplant ethically optional for neonates with SBS.
  • Only 33% of physicians frequently offered intestinal transplant to families.

Conclusions:

  • A significant gap exists between physician beliefs on intestinal transplant acceptability and actual practice.
  • Variability in knowledge and practice raises concerns about transparency and justice in infant care.
  • The absence of pre-transplant survival data hinders rational decision-making and informed parental consent.
Abstract

Keywords:
Clinical EthicsInformed ConsentNewborns and MinorsTechnology/Risk AssessmentTransplantation

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