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

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.