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End-of-life decision making for parents of extremely preterm infants


Hendriks, Manya J; Abraham, Andrea (2017). End-of-life decision making for parents of extremely preterm infants. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 46(5):727-736.

Abstract

Objective: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks).
Design: Hermeneutically oriented qualitative research design with in-depth interviews.
Setting: Level III NICU in Switzerland.
Participants: Purposive sample of seven couples, five mothers, and one father (20 parents).
Methods: Qualitative content analysis was used to categorize and interpret themes from parents' narratives.
Results: Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved.
Conclusions: Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.

Abstract

Objective: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks).
Design: Hermeneutically oriented qualitative research design with in-depth interviews.
Setting: Level III NICU in Switzerland.
Participants: Purposive sample of seven couples, five mothers, and one father (20 parents).
Methods: Qualitative content analysis was used to categorize and interpret themes from parents' narratives.
Results: Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved.
Conclusions: Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Hospital Zurich > Clinic for Neonatology
04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:September 2017
Deposited On:27 Dec 2017 13:19
Last Modified:19 Feb 2018 09:53
Publisher:Elsevier
ISSN:0090-0311
OA Status:Closed
Publisher DOI:https://doi.org/10.1016/j.jogn.2017.06.006
PubMed ID:28751157

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