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Provider concordance regarding elements of goals‐of‐care discussions in neonatal intensive care

Clinicians may struggle to discuss goals of care with parents in the Neonatal Intensive Care Unit (NICU) and may view key elements of such conversations differently. We previously described the relationship between components of goalsofcare discussions and change in moral distress following goalsofcare discussions.1 With the analysis described here, we sought to determine how providers who participated in the same goalsofcare discussion viewed key discussion elements in comparison with other provider participants. Understanding differences and concordance in perceptions may help to (1) understand the quality of goalsofcare discussions, (2) improve metrics of communication quality and (3) inform the development of targeted interventions to improve communication quality. We administered a validated instrument2 after goalsofcare conversations in the NICU. The Williams Instrument is an 82item survey used to assess care in the NICU after withdrawal of lifesustaining treatment.2 Discussions were identified after: (1) a weekly email was sent out to attendings who notified the study team if a goalsofcare discussion had happened or was planned or (2) social workers notified the team about goalsofcare discussions. We used questions from 4 domains: communication, quality of care, quality of life and shared decisionmaking, yielding 35 items. Participants ranked their agreement with statements on a 7point Likert scale. We circulated our survey to nurses, attending physicians and social workers within 10 days following a goalsofcare discussion. We collected data following discussions that occurred between January 2018 and February 2019. This study was approved by the Children's Hospital of Philadelphia Institutional Review Board and was conducted at the Children's Hospital of Philadelphia. Informed consent was obtained from all participants. We assessed simple percentage agreement of the responses for each Williams Instrument item amongst participants from the same discussion. We recoded the 7point Likert scale responses into a 3level scale to define low, moderate and high levels of agreement with each survey statement. Per cent agreement was estimated using the irr R package.3 Discussions had 2 or 3 participants. When a conversation had 3 participants, all possible pair combinations were considered. We assessed agreement amongst those who participated in the same goalsofcare discussion using Kendall's correlation coefficient of concordance. Analysis was conducted using SAS (V9.4) and R (V4.0.2) with RStudio (V1.3.1073). Ninetyone subjects participated in 79 separate goalsofcare discussions. Some subjects participated in more than one conversation. Most participants were white (90%) and female (95%). Twentytwo (24%) of participants were physicians, while fiftynine (65%) were nurses and ten (11%) were social workers. The mean age of participants was thirtyfour (standard deviation = 9.9). Scores on the Williams Instrument within a discussion were moderately concordant with a median Kendall's correlation coefficient of 0.40 (interquartile range: 0.32– 0.48; minimummaximum: 0.17– 0.65, n = 79; 64.6% of the coefficients had a pvalue<0.05). The percentage of individuals participating in the same conversation who endorsed the same level of agreement (low, middle or high) about the presence or absence of an item in that conversation differed amongst items on the Williams Instrument (Table 1). Sixtysix per cent of items (23/35) demonstrated moderate concordance (51%– 79% simple agreement). ‘Providers passed value judgements’ is an example of a statement about which there were low levels of agreement (Table 1). ‘Providers were frank and honest’ is an example of a statement about which there were high levels of agreement (Table 1). Providers who participated in the same conversation demonstrated moderate concordance with each other about that conversation. This finding is important to the future study of communication around difficult topics because it suggests potential for objectivity surrounding components of goalsofcare discussions. It also suggests that the Williams Instrument may reliably capture aspects of communication identified as important to parents and therefore potentially indicative of higher quality communication. This is useful given how difficult it has been historically to measure communication quality in the NICU and how valuable such measurement may be.4 Provider agreement varied by item. Items demonstrating high levels of disagreement may represent challenging aspects of conversations with disagreement indicating particular discomfort and difficulty. Prior work has demonstrated that disagreement between nurses and doctors about communication often relates to differences in priorities, roles and expectations.5 These differences may provide insight into the values, strengths and weaknesses of providers filling different roles and, if taken into account, have the potential to result in improved communication skills amongst providers. If participants interpreted an item differently, they might score that