SJ Walsh Professor of Bioethics, Boston College, Chestnut Hill, MA 02467, USA.
J Perinatol. 2012 Oct;32(10):748-51. doi: 10.1038/jp.2012.72. Epub 2012 Jun 7.
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.
直到 20 世纪 80 年代，威廉·诺伍德（William Norwood）为左心发育不全综合征（HPLHS）开发了分阶段姑息性手术，这种疾病才得到治疗。随着 20 世纪 80 年代医学的发展，患有 HPLHS 的婴儿有了三种选择：诺伍德手术、移植或舒适护理。随着诺伍德手术的存活率从最初的 30%提高到现在的 80%以上，一些医生认为舒适护理不应再是一种选择。然而，如果熟悉伴随 HPLHS 而来的神经和运动技能障碍的精通医学的父母反对手术，他们可以选择舒适护理。这种医疗治疗的双管齐下的方法似乎违反了患者护理的公平和平等规范。需要告知父母有关长期神经和运动技能发展以及生存率的信息，以便他们做出明智的同意。
