Initiating end-of-life decisions with parents of infants receiving neonatal intensive care

Shaw, Chloe and Connabeer, Kathrina and Drew, Paul and Gallagher, Katie and Aladangady, Narendra and Marlow, Neil (2020) Initiating end-of-life decisions with parents of infants receiving neonatal intensive care. Patient Education and Counseling. ISSN 0738-3991

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Objective: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented.
Method: Formal conversations (n=27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher’s exact test.
Results: When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use ‘recommendations’ or ‘single-option’ choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030).
Conclusion: Aligning parents to the trajectory of the news about their baby’s poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making.
Practice implications: Explicitly proposing treatment options may provide parents with opportunities to be involved in treatment decisions for their critically ill babies, thereby fostering shared decision-making.

Item Type: Article
Identification Number:
8 February 2020Accepted
10 February 2020Published Online
Uncontrolled Keywords: Decision making, neonates, end-of-life, conversation analysis, parents, withdrawing, withholding
Subjects: CAH04 - psychology > CAH04-01 - psychology > CAH04-01-01 - psychology (non-specific)
Divisions: Faculty of Business, Law and Social Sciences > School of Social Sciences > Dept. Psychology
Depositing User: Kathrina Connabeer
Date Deposited: 10 Mar 2020 11:00
Last Modified: 03 Mar 2022 15:42

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