Personalized Decision Making: Practical Recommendations for Antenatal Counseling for Fragile Neonates

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Key points

  • Personalized decision making during the antenatal consultation, as opposed to standardized and neutral transfer of information, empowers parents both during and after the decision-making encounter.

  • Consultative approaches should establish trust, and include attention to emotional and intuitive aspects of decision making.

  • Parents have varied preferences with regard to information, preferences for deliberation, and roles in decision making.

  • Personalized decision making should replace shared decision

Developments in neonatology and clinical ethics

Coinciding with these medical advances, changes in the bioethical decision-making landscape, rising consumerism, and federal legislation regarding children with disabilities led to increased recognition of the role of parents as decision makers.3, 4 The climate in the medical arena, previously marked by maternal-infant separation both in terms of parental physical absence and exclusion from decision making,5 evolved as seminal work championing maternal-infant bonding,1, 5 and patient-centered

Informing parents and decision making

Shared decision making recommends that physicians and parents work together, requiring at a minimum physician-parent exchanges of medical information and explorations of values resulting in decisions attained through mutual consent.11 Medical information considered essential to inform parents is based on presumptions of rational and informed decisional processes.12, 14, 15, 16 Reaffirmed as recently as 2015, this includes information about infant outcomes, with both local and national data,

The limitations of decision aids

Decision aids for antenatal counseling have attempted to overcome some of these challenges by using multiple modalities to improve comprehension of medical information and treatment options.60, 61, 62 However, as with the professional guidelines, assumptions of rational decision processes prevail and only a few neonatal decision aids have been constructed with parental input.60 None have been designed primarily, or only, by parents. In current neonatal decision aids, although survival and

Parental experience and concerns

Women at risk of preterm birth report feeling powerless and experience a sense of loss of control.69 As stated by one: “Uncertainty, it’s like vertigo or a precipice. And there is a lot of uncertainty. We don’t know when I will deliver. We don’t know how I will deliver. We don’t know how it will go for the baby. We don’t know what awaits the baby after. And we can get surprises, good or bad, for months after that.”69 Furthermore, individual families exist within their own social structure or

Personalizing the agenda

In the antenatal consultation, neonatal providers have an opportunity to identify parental concerns and offer support. An evolution in consultation approaches has begun favoring a “controlled-improvised” agenda.23 This contrasts strongly with the traditional physician-driven agenda, focused on conveying standardized medical risk information to all parents, supporting essentially rational decisional processes based on detailed information regarding outcomes. These new models of antenatal

Personalizing Conversations with Parents: a Controlled Improvisation Addressing what Matters to Parents

Personalizing conversations is not simple. It requires an assessment of the situation, an understanding of the parent and family, including previous experiences, emotions, and decision-making preferences, and an ability to support parental values and goals of the consultation. Approaching the consultation with an open and flexible mindset is essential; attempts to predict what parents want to discuss before meeting with them could compromise opportunities for a productive exchange. The

Institutional practices

Simple institutional practices can encourage personalized antenatal consultations for threatened preterm birth. These include accommodations, such as dedicating one neonatologist to serve as the antenatal consultant without additional responsibilities of managing a busy NICU and systematically offering follow-up NICU visits and consultations with the neonatologist and allied health professionals including multidisciplinary meetings. Frequent discussions between obstetricians and neonatologists,

Personalized decision making

Deciphering preferences in decision making is important. For many, shared decision making implies that parents want to collaborate in decisions with physicians. In theory, clinicians should learn to discern between parents’ informational needs for deliberation and their desires to be involved in making the decision, broadly defined as “problem solving” and “decision making.”80 Some parents may want information but not involvement in the decision, some parents may want both, or some may want

Summary

Decisions in the gray zone are complicated. They are reliant on personal viewpoints balancing sanctity of life and quality of life, reflect preferences for rational and intuitive processes, and roles in decision making. Instead of aspiring to achieve mutual consent in shared decision making, physicians should seek to practice personalized decision making. Personalized decision making would take into consideration a parent’s preferences for decisional responsibility and deliberation and thereby

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    A. Janvier has no conflicts of interest.

    Disclosure Statement: The authors have nothing to disclose.

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