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Parental Autonomy in the Light of Hope in Pediatric Palliative Care

Published online by Cambridge University Press:  14 October 2023

Marta Szabat
Affiliation:
Jagiellonian University, Krakow
Jan Piasecki
Affiliation:
Jagiellonian University, Krakow
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Summary

Abstract

The article examines the language used by Health Care Professionals’ (HCPs) during interpersonal communication with parents, in particular when discussing prenatal diagnoses and possible pediatric palliative care during pregnancy and later parental care for children with various genetic conditions such as Trisomy 13 (Patau syndrome) or Trisomy 18 (Edwards syndrome) and other life-threatening illnesses. As has become clear from relevant studies, some of the terms used by HCPs may be perceived by parents as offensive and unfortunate (e.g., phrases such as “incompatible with life,” “lethal,” etc.). Hence, in view of the vulnerable position of parents and the important role played by communication in the therapeutic process and its impact on parents’ well-being and their capacity to become autonomous and responsible for their own decisions and choices, this paper presents a number of possible solutions to these issues. The author concludes that the most effective communication strategy in the case of prenatal diagnoses is one that is personally oriented towards each individual parent, and which ensures that the information is neutral and understandable and addressed in the parents’ own language. Such a mode of interpersonal communication should leave room for hope, which itself serves a supportive function in that it allows parents to cope with highly sensitive decisions.

Keywords: pediatrics, autonomy, parents, palliative care, hope, clinical communication

Introduction

The purpose of this study is to discuss the metaphors used in interpersonal communication between Health Care Professionals (HCPs) and parents in the context of prenatal diagnoses that may entail possible pediatric palliative care (PPC) both during pregnancy and in the form of parental care for children with various genetic conditions, such as Trisomy 13 (Patau syndrome) or Trisomy 18 (Edwards syndrome) and other life-threatening illnesses.

This paper is divided into two parts. In the first, the author discusses the concept of autonomy and the strategy of maintaining parental hope. The second part focuses on the optimum language that should be used when informing parents of the abnormalities of their future child, which takes into account the need to maintain hope.

Type
Chapter
Information
Approaches to Death and Dying
Bioethical and Cultural Perspectives
, pp. 79 - 90
Publisher: Jagiellonian University Press
Print publication year: 2021

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