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Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Annie Janvier1, Keith Barrington2, Barbara Farlow3
1Department of Pediatrics and Clinical Ethics, University of Montreal, Montreal, Quebec, Canada; Sainte-Justine Hospital, Montreal, Quebec, Canada.
Insights
Discussions on withholding or withdrawing life-sustaining interventions for neonates require personalization. The SOBPIE mnemonic offers a framework for healthcare teams to navigate these sensitive conversations with parents, considering their unique needs and emotions.
Area of Science:
- Neonatal care
- Bioethics
- Pediatric palliative care
Background:
- Conversations regarding life-sustaining interventions for neonates vary significantly.
- Communication challenges arise due to infant status and parental uncertainty.
- Existing recommendations lack specific guidance for clinical practice.
Purpose of the Study:
- To explore the complexities of end-of-life discussions between healthcare teams and parents of neonates.
- To propose a structured approach for personalizing these sensitive conversations.
- To highlight the importance of considering parental values and emotions.
Main Methods:
- Review of literature on communication in neonatal end-of-life care.
- Introduction of the "SOBPIE" mnemonic as a communication framework.
- Discussion of key elements for individualizing discussions: Situation, Opinions/Options, Basic interactions, Parents' needs, Information, and Emotions.
Main Results:
- Healthcare providers and parents may hold differing values regarding interventions.
- Parental decisions are influenced by factors beyond probabilities, including emotions and quality of life.
- The SOBPIE mnemonic provides a comprehensive approach to structure and personalize these discussions.
Conclusions:
- End-of-life discussions for neonates must be individualized and empathetic.
- The SOBPIE framework can facilitate more effective and sensitive communication.
- Addressing parental emotions and needs is crucial for shared decision-making in neonatal care.
Abstract:
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
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