Speaking up about care concerns in the ICU: patient and family experiences, attitudes and perceived barriers

BACKGROUND: Little is known about patient/family comfort voicing care concerns in real time, especially in the intensive care unit (ICU) where stakes are high and time is compressed. Experts advocate patient and family engagement in safety, which will require that patients/families be able to voice concerns. Data on patient/family attitudes and experiences regarding speaking up are sparse, and mostly include reporting events retrospectively, rather than pre-emptively, to try to prevent harm. We aimed to (1) assess patient/family comfort speaking up about common ICU concerns; (2) identify patient/family-perceived barriers to speaking up; and (3) explore factors associated with patient/family comfort speaking up. METHODS: In collaboration with patients/families, we developed a survey to evaluate speaking up attitudes and behaviours. We surveyed current ICU families in person at an urban US academic medical centre, supplemented with a larger national internet sample of individuals with prior ICU experience. RESULTS: 105/125 (84%) of current families and 1050 internet panel participants with ICU history completed the surveys. Among the current ICU families, 50%–70% expressed hesitancy to voice concerns about possible mistakes, mismatched care goals, confusing/conflicting information and inadequate hand hygiene. Results among prior ICU participants were similar. Half of all respondents reported at least one barrier to voicing concerns, most commonly not wanting to be a ‘troublemaker’, ‘team is too busy’ or ‘I don’t know how’. Older, female participants and those with personal or family employment in healthcare were more likely to report comfort speaking up. CONCLUSION: Speaking up may be challenging for ICU patients/families. Patient/family education about how to speak up and assurance that raising concerns will not create ‘trouble’ may help promote open discussions about care concerns and possible errors in the ICU.