Ethical issues for parents of extremely premature infants

Abstract

Evidence suggests that NICU (neonatal intensive care unit) parents with an baby born at the threshold of viability do not always receive sufficient counselling during an emergency admission and as a consequence, are not well-informed to accept withdrawal of treatment or quality of life decisions. As prospective parents are not educated earlier in pregnancy about extreme premature delivery, crucial information and counselling explaining neonatal issues is only offered to labouring women during their emergency admission. As a result, most have difficulty understanding the risks and benefits of baby's treatment and therefore rely heavily on the perinatal physician to take responsibility for the initial treatment. However, this lack of understanding often leaves parents disadvantaged, as many are left unprepared to participate objectively in quality of life decisions. According to recent research, morbidity figures remain relatively high with one in five survivors at risk of a long-term disability. This shows that some parents will still be confronted by ethical decision of whether or not to continue treatment, and this may not be apparent until days after treatment has been established. As recent research has shown, parents do, in fact, want increased involvement in the decision-making process regarding their child's treatment. Therefore, it has been argued, that parents should be provided with information earlier in pregnancy to familiarise themselves with quality of life issues which they may encounter as the NICU parents of an extremely premature infant.