From Birth to Death? A Personalist Approach to End-of-Life Care of Severely Ill Newborns

Abstract

In this paper, a personalist ethical perspective on end-of-life care of severely ill newborns is presented, by posing two questions. (1) Is it ethically justified to decide not to start or to withdraw life-sustaining treatment in severely ill newborns? And (2), is it ethically justified, in exceptional cases, to actively terminate the life of severely ill newborns?Based on five valuesrespect for life and for the dignity of the human person, quality of life, respect for the process of dying, relational autonomy, and justicean ethical assessment is conducted that brings us to an answer to the two ethical questions. (1) Noninitiation or withdrawal of life-sustaining medical treatment in severely ill newborns is ethically acceptable, and might even be a moral duty, when initiation or continuing of medical treatment can be considered as futile or even harmful. (2) However, according to the personalist approach, it is not ethically acceptable to actively terminate the life of a severely ill newborn.

Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature

“…From this stance, the intrinsic asymmetry of the doctor-patient relationship is overlooked [25, 30, 33, 40, 69], and the importance of other values at stake, such as beneficence, care, responsibility, nonmaleficence, etc., go unnoticed [25, 34, 45, 47, 49, 56, 65, 70]. In particular, an individualistic understanding of autonomy seems to disregard important social values, such as justice, solidarity, and social responsibility [34, 41, 42, 47, 58, 71].…”

“…First, decision-making was better depicted as being a dynamic ongoing process rather than an isolated discrete event [25, 36, 69]. Second, decision-making was described as not being an exclusively rational act [28, 42, 45, 52, 54, 55, 63, 65, 68, 69]. Relational theorists have highlighted the importance of emotions, imagination, and non-verbal communication, as essential elements of human decision-making [27, 28, 32, 45, 48, 52, 54, 68, 69, 73].…”

“…Feminist and care ethicists frequently referred to the works of Carol Gilligan [29, 41, 45, 55, 58, 63] and Joan Tronto [48, 52, 58, 63]. Those that espoused personalist approaches mainly looked to the works of Paul Ricoeur [42, 56, 58, 61, 65, 69, 70]; Martin Buber [29, 56, 70, 74]; and Emmanuel Levinas [29, 56, 69, 70]. On the other hand, those who framed their articles around relational ethics mentioned the works of Vangie Bergum and John Dossetor [52, 73].…”

“…Therefore, according to some articles, one’s personal interests are not only self-centred but ‘others-centred’ as well [25, 45, 52]. Some authors concluded that it is impossible to separate people from their social environment [41, 42, 45, 72, 73] or their culture [29, 31, 42, 44, 46, 55, 64]. These findings indicate that a relational anthropology is more sensitive to contextual and cultural mediations.…”

“…We found that authors insisted on the notion of an embodied self [26, 42, 45, 62, 69, 73], which entails vulnerability [25, 28, 30, 35, 36, 39, 40, 42, 47, 50, 52, 55, 58, 68–70, 73, 74] and dependency on others’ care [29, 36, 37, 45, 47, 49, 50, 52, 58, 64, 68]. These anthropological characteristics were essentially linked with other aspects, such as reciprocity [25, 43, 55, 63, 72, 74], responsibility [25, 42, 45, 47, 49, 54–56, 68, 70, 74], and collaboration [27, 43, 55].…”