Review on Neonatal End-of-Life Decision-Making: Medical Authority or Parental Autonomy?

Abstract

As advances in medical technology are constantly redefining the lower limit of newborn viability, the practice of withholding/withdrawing treatment in neonatal care is increasingly prevalent. Now more than ever, physicians working in neonatal intensive care units have to constantly face the ethical dilemma of terminating the neonates' life support, sometimes against the parents' desire. Traditionally and legally, parents have the duty to make decisions on behalf of their infants because they are the ones to whom the consequences matter the most. Physicians, on the other hand, often claim for themselves the role of the child's advocate, with the growing acceptance of the patient's "best interest" standard as the guiding principle. In this mini literature review, the authors examined the issue of medical authority versus parental autonomy in neonatal end-of-life (EoL) decisionmaking and found that consultations with parents were made in the majority (79-100%) of cases. Furthermore, conflicts between doctors and family were shown to occur quite frequently due to barriers to effective communication such as strong religious convictions and disagreements within medical team members. Only by encouraging active parental participation and overcoming some of these barriers, physicians and the patient's family could arrive at an ethically sound EoL decision.

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

“…The Swiss Civil Code for the protection of adults and children, enacted in 2013, emphasises parental authority when a child is incapable of making his or her own decisions. Shared decision-making between HCPs and parents is proposed by many national guidelines [ 7 , 16 ]. It is a process aiming at a collaborative decision.…”

“…Today, it is generally accepted that end-of-life decisions in extremely preterm infants should be made in a process involving physicians, nurses and parents [ 6 , 7 ]. This makes it especially important to discuss and reflect upon the – possibly – diverse moral attitudes and values of stakeholders, and specifically in this study, health care professionals.…”

Approaches to the initiation of life-sustaining technology in children: A scoping review of changes over time

“…Initially, concerns are expressed in the literature that not only has medical technology created the possibility of making a decision about whether a child lives or dies (Crane, 1973; Hauerwas, 1975; Howard et al, 1977; Culliton, 1975; Frader, 1979) but that its presence might become a powerful factor itself, in terms of ‘the technology is there and should be used’ (Howard et al, 1977; Duff, 1979; Frader, 1979). Later literature continues to discuss how technology increasingly makes possible the need for a decision, for example in the lowering of the age of potential viability of newborns (Nguyen and Ho, 2013; Verloove-Vanhorick, 2006). Societal expectations emerge surrounding technology’s ability to preserve life, and there is increased reluctance to deny treatment if the technology exists (Kohrman, 1994; Riviera et al, 2001).…”

“…In some countries, however, this may contravene legal imperatives to sustain life whenever possible (Bülbül et al, 2015;Campbell and Duff, 1979;Duff and Campbell, 1976;Frader, 1979). Greater weight seems to be attributed to the person-centred model and the guiding influence of the personal values of all the participants in the decision-making process (Brunkhorst et al, 2014;Cuttini et al, 2000;Larcher, 2013;Larcher et al, 2015;Lotz et al, 2015Lotz et al, , 2016Nguyen and Ho, 2013;Sundean and McGrath, 2013). However, there is initial reluctance to admit to these influences (Hauerwas, 1975;Sørlie et al, 2000Sørlie et al, , 2001.…”

“…Since the millennium, articles show the emergence of moral distress in health professionals who must act to carry out decisions they do not agree with (Carter and Miller-Smith, 2016;Mekechuk, 2006;Sørlie et al, 2000Sørlie et al, , 2001. There is also a strong belief in their duty to save the parents any subsequent feelings of regret or guilt (Brunkhorst et al, 2014;Horridge, 2015;Nguyen and Ho, 2013).…”