AIMS/METHODS: To better understand the dynamics of parental communication and involvement in treatment withdrawal decisions in the NICU, we compared parental and health provider perceptions of communications and attitudes toward treatment decision making, and followed them over time. Using self-report questionnaires, we simultaneously surveyed parents of infants meeting study criteria for being at risk of treatment withdrawal (<26 weeks gest, <750 gm BW, severe hypoxic-ischaemic encephalopathy) and their health providers at Children's & Women's Health Centre of B.C. in 1997. Infants<48 hours or >6 days old, or for whom participation was not agreed to by the neonatologist, were excluded. A repeat mailed questionnaire was administered to parents 6 weeks later. Response rates: parents 66% (23/35 infants), health providers (physicians, nurses, social workers) 70%(70/100).

RESULTS: At initial survey, more parents than health providers felt that their infants were critically ill (83% vs 64%), but likely to survive (80% vs 63%), and not at high risk for severe handicap (31% vs 62%). Parents were more likely than providers to feel that they could cope with a child with behavior disorder (96% vs 54%), global learning disorder (86% vs 48%), or multiple handicaps (47% vs 16%). Parents were also more likely than providers to feel that consistent information was given by physicians (56% vs 10%) and nurses(72% vs 6%) separately, but less likely to feel that information given by physicians was consistent with that given by nurses (56% vs 88%). Six weeks after the initial survey, parents were less likely to believe that physicians had not fully disclosed information about their infants' condition (5% vs 27%), but more likely to feel that expert committees were inappropriate for making treatment withdrawal decisions (23% vs 9%) and that the law should not interfere with such decisions (95% vs 85%).

CONCLUSIONS: Parents and health providers have different perceptions about communications and treatment decisions in the NICU, and parental perceptions change over time. A better understanding of these dynamics is needed to improve communications and enhance treatment decision making.