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Original Investigation
March 19, 2018

Characteristics Associated With Preferences for Parent-Centered Decision Making in Neonatal Intensive Care

Author Affiliations
  • 1Division of Neonatology, Department of Pediatrics, University of Washington School of Medicine, Seattle
  • 2Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital and Research Institute, Seattle, Washington
  • 3Department of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine, Philadelphia
  • 4Division of Neonatology, Children’s Hospital of Philadelphia Newborn Care at Pennsylvania Hospital, Philadelphia
  • 5Division of Neonatology, Department of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 6Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia
  • 7Division of Oncology, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 8Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia
JAMA Pediatr. Published online March 19, 2018. doi:10.1001/jamapediatrics.2017.5776
Key Points

Question  What characteristics of decisions are associated with preferences for parent- vs medical team–centered decision making among parents of children in the neonatal intensive care unit?

Findings  This cross-sectional survey of 136 parents of children in the neonatal intensive care unit showed that when decisions involved big-picture goals and had a high potential to harm the infant, parents tended to prefer parent-centered decision making. In contrast, when decisions were technical in nature, had a high potential for benefit, required medical expertise, and were urgent, parents tended to prefer medical team–centered decision making.

Meaning  Decision-making preferences among parents of children in the neonatal intensive care unit may vary systematically by decision-level characteristics; incorporating this variation into shared decision making may improve the outcomes of medical decisions.

Abstract

Importance  Little is known about how characteristics of particular clinical decisions influence decision-making preferences by patients or their surrogates. A better understanding of the factors underlying preferences is essential to improve the quality of shared decision making.

Objective  To identify the characteristics of particular decisions that are associated with parents’ preferences for family- vs medical team–centered decision making across the spectrum of clinical decisions that arise in the neonatal intensive care unit (NICU).

Design, Setting, and Participants  This cross-sectional survey assessed parents’ preferences for parent- vs medical team–centered decision making across 16 clinical decisions, along with parents’ assessments of 7 characteristics of those decisions. Respondents included 136 parents of infants in 1 of 3 academically affiliated hospital NICUs in Philadelphia, Pennsylvania, from January 7 to July 8, 2016. Respondents represented a wide range of educational levels, employment status, and household income but were predominantly female (109 [80.1%]), white (68 [50.0%]) or African American (53 [39.0%]), and married (81 of 132 responding [61.4%]).

Main Outcomes and Measures  Preferences for parent-centered decision making. For each decision characteristic (eg, urgency), multivariable analyses tested whether middle and high levels of that characteristic (compared with low levels) were associated with a preference for parent-centered decision making, resulting in 2 odds ratios (ORs) per decision characteristic.

Results  Among the 136 respondents (109 women [80.1%] and 27 men [19.9%]; median age, 30 years [range, 18-43 years]), preferences for parent-centered decision making were positively associated with decisions that involved big-picture goals (middle OR, 2.01 [99% CI, 0.83-4.86]; high OR, 3.38 [99% CI, 1.48-7.75]) and that had the potential to harm the infant (middle OR, 1.32 [99% CI, 0.84-2.08]; high OR, 2.62 [99% CI, 1.67-4.11]). In contrast, preferences for parent-centered decision making were inversely associated with the following 4 decision characteristics: technical decisions (middle OR, 0.82 [99% CI, 0.45-1.52]; high OR, 0.48 [99% CI, 0.25-0.93]), the potential to benefit the infant (middle OR, 0.42 [99% CI, 0.16-1.05]; high OR, 0.21 [99% CI, 0.08-0.52]), requires medical expertise (middle OR, 0.48 [99% CI, 0.22-1.05]; high OR, 0.21 [99% CI, 0.10-0.48]), and a high level of urgency (middle OR, 0.47 [99% CI, 0.24-0.92]; high OR, 0.42 [99% CI, 0.22-0.83]).

Conclusions and Relevance  Preferences for parent-centered vs medical team–centered decision making among parents of infants in the NICU may vary systematically by the characteristics of particular clinical decisions. Incorporating this variation into shared decision making and endorsing models that allow parents to cede control to physicians in appropriate clinical circumstances might improve the quality and outcomes of medical decisions.

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