Informed consent in the intensive care unit: the experiences and expectations of patients and their families

Objective: To describe the awareness of intensive care unit patients and their next of kin (NoK) about invasive procedures and their expectations of informed consent for procedures in the ICU. Design and setting: A written survey of patients and their NoK in a tertiary, university-affiliated ICU, using multiple-choice questions, Likert scales and comments to generate semiquantitative and qualitative data. Participants: Fifty-one ICU patients and 69 NoK completed the survey. Inclusion criteria were unplanned ICU admission, ICU length-of-stay > 24 hours, English speaking and competent to consent to participate. Main outcome measures: Proportion of procedures respondents were aware had occurred during ICU admission; satisfaction with information received; preferred method of receiving information and giving consent; and expectations of when procedural consent is required. Results: Patients and NoK were unaware of many procedures performed during their admission. Respondents correctly identified 49% (95% CI, 45%-53%) of procedures performed during the patients ICU admission. Despite this, most patients (80%; 95% CI, 69%-91%) and NoK (94%; 95% CI, 89%-100%) were satisfied with information provided about procedures. Over half of respondents (55%; 95% CI, 46%-64%) only expected consent for procedures that were "risky or not routine". About one-quarter (27%; 95% CI, 23%-31%) expected to give consent before every procedure and 15% (95% Cl, 11%-18%) expected no procedural consent process. Patients and NoK strongly preferred a verbal rather than written consent process. Conclusions: Our results suggest there is a limited degree of support for routine procedural consent from ICU patients and their NoK.