Ethical issues about the paradigm shift in the treatment of children with trisomy 18

Management of Children with the Trisomy 18 and Trisomy 13 Syndromes: Is there a Shift in the Paradigm of Care?

“…The last of these exemplary studies is Fruhman et al 10 who queried U.S. obstetricians, and 75% considered it unethical to offer cardiac surgery in trisomy 18 and 13; 69% indicated they would not favor medical insurance covering heart surgery in trisomy 18 and 13, while they would favor coverage in trisomy 21/Down syndrome and Turner syndrome. These three selected survey studies support the notion that the majority (or close to) of physicians in perinatology favor a more noninterventionist approach to care and that the typical approach to management consists of the avoidance of treatment or as stated by Silberberg et al, 3 the "denial of any specific treatment. "…”

“…In this context, authors have even used the designation, "denial of treatment" 3 and terms including "lethal" and "incompatible with life" in reference to the two syndromes that are commonplace in the discourse. [2][3][4] These cited publications and others mentioned below suggest that there has been a recent increase in the administration of interventions such as ventilatory support and surgery in the management of children with trisomy 18 and 13. Lorenz and Hardart 1 enumerate the factors that have spurred this proposed shift, including improvements in treatment, the emergence of parent support groups, the role of social networks, and the disability advocacy movement as influences in the trend.…”

“…trisomy 18 and 13. [1][2][3] The traditional view toward care in infants with the trisomy 18 and 13 syndromes has been to recommend pure comfort care and the avoidance of technological interventions. (It is important to underscore that "pure comfort care" as overseen by current perinatal and pediatric palliative care teams is not a passive approach to care but is an active goal-directed regimen of support for parents and child.)…”

“…In fact, I would suggest that this worldview seems to be the conventional wisdom and embedded in the culture of the specialties. The recent papers by Lorenz and Hardart, 1 Pyle et al, 2 Silberberg et al, 3 and Mc Caffrey 5 provide different perspectives on the care issues and advocate for more balanced and inclusive approaches. A recent trend that likely plays a major role in a changing view toward management of infants with the two conditions is the current literature recommending shared decision making in the care of individuals with trisomy 13 and 18 prenatally and postnatally 21,22 .…”

Hirschsprung disease with Edward syndrome: A rare association: A case report

“…From an ethical point of view, it is necessary for a physician to identify those children who would actually benefit from an interventionist approach, consider factors like overall survival, long term quality of life, and not simply deny an interventionist approach based solely on a diagnosis of trisomy 18. Simultaneously, it is of paramount importance to respect parental values, consider parental decisions, and also the right to parental authority [ 15 ]. After making a successful diagnosis of ES prenatally, proper counseling is needed to help the parents make decisions regarding the possible future outcomes of the child [ 6 ].…”