Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents’ and healthcare practitioners’ views

• Published in: Medicine, health care, and philosophy health care, and philosophy, 2017-09, Vol.20 (3), p.365-371
• Main Authors: Fournier, Véronique, Belghiti, Elisabeth, Brunet, Laurence, Spranzi, Marta
• Format: Article
• Language: English
• Subjects: Bioethics; Death & dying; Decision Making - ethics; Education; Ethics; Euthanasia; France; Health Personnel - ethics; Health Personnel - psychology; Humans; Hydration; Infant, Newborn; Intensive care; Intensive Care Units, Neonatal - ethics; Interviews as Topic; Medical ethics; Medical Law; Medical personnel; Morals; Neonatal care; Parents & parenting; Parents - psychology; Philosophy; Philosophy of Biology; Philosophy of Medicine; Scientific Contribution; Theory of Medicine/Bioethics; Withholding Treatment - ethics
• ISSN: 1386-7423; 1572-8633
• DOI: 10.1007/s11019-017-9754-5

Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders’ experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby’s appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant’s death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices—that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby’s death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby’s comfort during the dying process, as well as the support owned to h