Until the development in 1980 by William Norwood of a staged palliative surgical procedure for hypoplastic left heart syndrome (HPLHS), there was no treatment for that condition. With medical developments in the 1980s, parents had the option of the Norwood procedure, transplantation or comfort care for a child born with HPLHS. With an improvement in the survival rate for the Norwood procedure from an initial 30% to now better than 80%, some physicians believe that comfort care should no longer be an option. If, however, medically sophisticated parents, who know the neurological and motor skills impairments that accompany HPLHS, object to the surgery, they are allowed to opt for comfort care. This two-pronged approach to medical treatment seems to violate the norms on equity and fairness in the care of the patient. Parents need to be informed about long-term neurological and motor skill development as well as survival rates to give informed consent.
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Paris, J., Moore, M. & Schreiber, M. Physician counseling, informed consent and parental decision making for infants with hypoplastic left-heart syndrome. J Perinatol 32, 748–751 (2012). https://doi.org/10.1038/jp.2012.72
- hypoplastic left heart syndrome
- informed consent
- parental decision making
- physician counseling
Orphanet Journal of Rare Diseases (2015)