Ethical challenges and justice concerns for infants and children with life-limiting conditions and significant disability, including trisomy 13 and 18.

Abstract

Some life-limiting conditions associated with significant neurodevelopmental impairment, such as trisomy 13/18, have historically been considered lethal, thus medical or surgical treatments would be inappropriate. Evolving literature has shown that early death is not universal, and though all who survive with trisomy 13/18 will have significant impairments, some experience a positive quality of life. The presence of bias impacts counseling as well as what interventions are offered and/or provided to families of a child with anticipated significant disability. Shared decision-making processes should include parents receiving all relevant information about comfort care as well as available, indicated, and ethically permissible medical/surgical interventions. Ethical frameworks can help clarify which options would be permissible to offer or withhold on an individualized basis. Clinicians are encouraged to be open to revisiting past and sometimes long-established practices regarding patients with disability. A willingness to change should not be perceived as an indictment of past practice.