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Published on: August 15, 2018
Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision?
Antoine Payot1, Sylvie Gendron, Francine Lefebvre
1Département de Pédiatrie, Hôpital Sainte-Justine, Université de Montréal, Montreal, QC, Canada. antoine.payot@umontreal.ca
Insights
Parents making life-or-death decisions for extremely premature babies need more than just facts. Shared decision-making and emotional support are crucial for ethical resuscitation choices at the threshold of viability.
Area of Science:
- Neonatal Medicine
- Medical Ethics
- Perinatal Psychology
Background:
- Decisions regarding resuscitation of extremely premature infants (23-25 weeks gestation) present profound ethical challenges for parents and neonatologists.
- Parents face a critical choice between life and death for their infant at the threshold of viability, often amidst an unplanned delivery.
Purpose of the Study:
- To explore the decision-making process between parents and neonatologists concerning resuscitation of infants born at the threshold of viability.
- To understand parental and neonatologist perspectives during critical neonatal consultations.
Main Methods:
- Qualitative study involving separate interviews with 12 parents and their attending neonatologists.
- Interviews conducted immediately following neonatal consultations in a tertiary care center in Montreal, Canada.
Main Results:
- Neonatologists and parents approach decision-making from different perspectives: neonatologists focus on medical management, while parents are still grieving and conceptualizing parenthood.
- Neonatologists utilize either neutral information provision or proposal-based models, with parental confidence linked to information alignment with expectations and experiences.
- Parents desire emotional support and engagement from caregivers, not just factual data, to navigate uncertainty and avoid feeling isolated in their decision.
Conclusions:
- The traditional model of neutral informed consent is insufficient for resuscitation decisions at the threshold of viability.
- A shared decision-making model, incorporating emotional support and caregiver engagement, is necessary for ethical decision-making in resuscitating extremely premature infants.
- Addressing parental grief and the conceptualization of parenthood is vital for effective communication and shared decision-making in neonatal intensive care.
Abstract:
Parents at risk of delivering a baby at the threshold of viability are faced with a critical decision. When a child is born between 23 and 25 weeks of gestation, parents are asked to decide whether or not to resuscitate their child. In essence, they are faced with a choice between life and death. We conducted a qualitative study to explore how parents and neonatologists engage in decision-making in a context of imminent and unplanned delivery at the threshold of viability. Twelve parents and attending neonatologists in a specialized tertiary care centre in Montreal, Canada were separately interviewed immediately following neonatal consultation. Results highlight how neonatologists and parents engage in decision making from different standpoints: while neonatologists focus on the management of the unborn baby, parents have yet to fully conceptualize their infant as a distinct entity since they are in a process of grieving their pregnancy and their parenthood project. Moreover, in their attempt to ensure an informed decision, neonatologists adopt either of two models through provision of the most up-to-date and objective information available: "remaining as neutral as possible to allow parents to make their own decision", or, "formulating a proposal to which parents can choose or not to assent". Overall, if the provided information fits parents' expectations, they tend to feel confident with their decision. However, if it does not take their experience into account, their decision is experienced as a solitary process. Parents express the need to receive more than just factual information from neonatologists. They also require support and engagement from caregivers to manage the uncertainty. This brings into question the traditional concept of neutral informed consent and suggests the necessity of a shared decision-making model to ensure that the decision to resuscitate extremely premature babies, at the limits of viability, becomes a truly ethical task.
