End-of-Life Decision-Making for Severely Ill Newborns: Neonatologists' Point of View and the Greek Legislation

End-of-Life Decision-Making for Severely Ill Newborns: Neonatologists' Point of View and the Greek Legislation

Ilias Chatziioannidis, Evangelia Gkiougki, Abraham Pouliakis, Zoi Iliodromiti, Rozeta Sokou, Takis Vidalis, Theodora Boutsikou, Theodoros Xanthos, Nicoletta Iacovidou
Copyright: © 2020 |Pages: 10
DOI: 10.4018/IJRQEH.2020100103
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Abstract

Advances in neonatology enabled significant improvements in neonatal survival, often at the expense of long-term morbidity. End-of-life decisions concern neonatal patients with fatal congenital anomalies, severe neurological deficits, and extreme prematurity at the limits of viability, presenting a complex issue for both healthcare professionals and parents. Since newborns cannot express their wishes or claim their rights, physicians and parents carry the responsibility to decide in their best interests, considering their future quality of life. Harmonization of scientific progress and legislation defining clear rules is necessary so neonatologists can proceed to such agonizing decisions. Greece lacks both specific legislation regarding such decisions and medical training on handling respective ethical dilemmas. Thus, guidelines improving such decisions are closely related to the quality of the healthcare system and should be established along with the legal system's adaptation.
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Introduction

Advances in Neonatology and medical technology over the last decades have drastically improved survival, even of the most premature, marginally viable infants (Cuttini, Casotto, de Vonderweid et al., 2009; Guimaraes, Rocha, Bellieni et al., 2012; Rebagliato, Cuttini, Broggin et al., 2000). However, survivors present significant rates of long-term morbidity (Rebagliato, Cuttini, Broggin, Berbik, de Vonderweid, Hansen, Kaminski, Kollee, Kucinskas, Lenoir, Levin, Persson, Reid, Saracci, & Group, 2000), and this raises intensive care ethical dilemmas (Rebagliato, Cuttini, Broggin, Berbik, de Vonderweid, Hansen, Kaminski, Kollee, Kucinskas, Lenoir, Levin, Persson, Reid, Saracci, & Group, 2000) due to severe difficulties in social integration. Neonatologists often face ethically difficult decisions regarding: a) prenatal management of both mother and her fetus, in collaboration with the obstetric team, b) initiation of active resuscitation at birth and admission in the Neonatal Intensive Care Unit (NICU), c) continuation of invasive intensive care and d) withholding or withdrawal of life-sustaining treatments and palliative care provision when death appears inevitable (Nuffield Council on Bioethics, 2006b). In this respect, decisions may vary between sustaining life at any cost, regardless of the potential severe morbidities (sanctity of life approach), and withdrawing intensive care in case of poor neurologic prediction (quality of life approach) (Rebagliato, Cuttini, Broggin, Berbik, de Vonderweid, Hansen, Kaminski, Kollee, Kucinskas, Lenoir, Levin, Persson, Reid, Saracci, & Group, 2000). Such decisions are controversial from medical, ethical and legal viewpoints (Rebagliato, Cuttini, Broggin, Berbik, de Vonderweid, Hansen, Kaminski, Kollee, Kucinskas, Lenoir, Levin, Persson, Reid, Saracci, & Group, 2000).

Medical ethics are based on four principles: favoring the best interest of the patient (beneficence), not causing harm (non- maleficence), ensuring justice, and preserving the right of the patient (in case of infants, represented by the parents) to refuse or choose his/her treatment (autonomy) (Marty & Carter, 2018). Possible dilemmas concern intrinsic value of life, decision-making in cases of uncertain prognosis, and importance of quality of life (Guimaraes, Rocha, Bellieni, & Buonocore, 2012; Larcher, 2013; Willems, Verhagen, van Wijlick et al., 2014). Decisions regarding continuation or limitation of an ' 'infant's treatment are difficult and emotionally charged (Cuttini, Casotto, de Vonderweid, Garel, Kollee, Saracci, & Group, 2009).

End-of-life decisions (EoLDs) concerning incurably ill newborns are influenced by personal moral values and beliefs of both physicians and parents. Moreover, there are wide variations in medical policies across countries of a different culture, as studies across several European countries have shown (Guimaraes, Rocha, Almeda et al., 2012; Guimaraes, Rocha, Bellieni, & Buonocore, 2012; Rebagliato, Cuttini, Broggin, Berbik, de Vonderweid, Hansen, Kaminski, Kollee, Kucinskas, Lenoir, Levin, Persson, Reid, Saracci, & Group, 2000). There is no consensus regarding potential choices and factors to be considered in NICUs, especially in countries like Greece that lack specific legal provisions and/or medical ethics guidelines.

This article presents a brief review of the attitudes and views of Neonatologists towards end-of-life decisions, additionally referring to the recent Greek legislation.

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