How do physicians perceive quality of life? Ethical questioning in neonatology

Abstract

BackgroundThe outcome of very preterm infants is marked by the development of complications that can have an impact on the quality of life of the children and their families. The concept of quality of life and its evaluation in the long term raise semantic and ethical problems for French physicians in perinatal care. Our reflection aims to gain a better understanding of the representations surrounding quality of life in neonatal medicine.DiscussionIf French physicians hesitate to face this concept (through self-interest and apprehension), it is because the debate has become more complex. Formerly, the dilemma was between respect for life versus quality of life. Today, although this dilemma is still with us, the questions raised by French physicians show us that autonomy is given increasing importance. The equation to be solved now contains three variables: respect for life, well-being, autonomy. So we find ourselves between three positions and no longer two: respect for life (the ethics of conviction), quality of life based on autonomy (rationalist and secular deontologism), and quality of life based on the differential between well-being and suffering (utilitarianism).SummaryA solution could lie in consequentialism, which integrates the consequences for future generations in terms of both safeguarding of autonomy and quality of life, and puts the sacredness of life in second place but without sacrificing it. By evaluating their future quality of life, we can better respond to the needs of these children.

Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population‐based study

“…Our study revealed that the overall perceptions of the population seemed related to future considerations and notions such as independence. This pattern has also been identified by other surveys on physicians' assessments of QoL in which the child's predicted suffering, inability to communicate and future autonomy were given increasing importance (20,21). This implies that QoL should not only include the well-being of the infant, but also the infants' future potential for independence.…”

Quality of life of extremely preterm school-age children without major handicap: a cross-sectional observational study

“…Moreover, the idea of ‘burden’ appears in the literature,36 in reference to the heavy demands placed on medical and rehabilitation follow-up. This raises questions regarding the intensive medical and economic measures implemented in the perinatal period as compared with those reduced after the infant’s follow-up discharge.…”

“…Given the specific nature of the problems raised by ETP, in particular the dilemma of the limits of viability,36 the experts would benefit from a tool to rationalise individual decision-making, notably to reflect on the ‘burden–benefit’ balance of neonatal surveys.…”

Ethische Entscheidungsfindung in der Neonatologie

“…Autonomie. Um Autonomie zu respektieren, muss die Fähigkeit zum absichtlichen Handeln auf der Grundlage eigener rationaler Überlegungen gegeben sein (Einaudi et al 2015), wozu das Frühgeborene aber nicht in der Lage ist. Das Prinzip der Autonomie kann daher in diesem Zusammenhang nicht zur Anwendung kommen.…”