Family Presence in the Adult ICU During Bedside Procedures.

PURPOSE: To understand perspectives of family members of adult patients admitted to the medical-surgical intensive care unit (ICU) regarding their presence during procedures. METHODS: Respondents completed a questionnaire about procedures the patient had undergone, their desire to be present, and their experience. Procedures of interest were endotracheal intubation; chest compressions; vascular catheter insertion; and gastric, chest, and rectal tubes. Impact of Events Scale-Revised (IES-R) was completed at the time of questionnaire completion and again 1 month later to evaluate the psychological impact of witnessing a procedure. RESULTS: Ninety-seven respondents completed the questionnaire on behalf of 72 patients. More than 90% patients had at least 1 procedure. Only 29 (30%) family members were present for at least 1 procedure, and 44% to 100% wished to be present. Of the 68 respondents not present for a procedure, 18 (26.5%) wanted to be present. The IES-R was completed by 52 (95%) of 55 respondents who witnessed any procedure at time 1 and 28 (51%) of 55 respondents at time 2; mean IES-R scores were 8.0 and 8.8 ( P = .68), respectively. Only 2 participants had IES-R >33, signifying the likely presence of posttraumatic stress disorder. CONCLUSION: Family members wish to be present for ICU procedures, and there are no adverse psychological effects.

Why substitute decision makers provide or decline consent for ICU research studies: a questionnaire study.

PURPOSE: Consent for research participation in the intensive care unit (ICU) is often obtained from a substitute decision maker (SDM). In this study we explored SDMs' reasons for declining or providing consent for research studies for critically ill adult family members. METHODS: Two questionnaires were developed, one directed at SDMs who agreed to have their relative participate in a research study (AGREE group), and another for SDMs who declined participation (DECLINE group). The questionnaires explored SDMs' opinions about research in general, timing of research approach, the informed consent process, and reasons for agreeing or declining participation. RESULTS: Ninety-six SDMs completed the questionnaire (68 AGREE, 27 DECLINE). There were no differences between AGREE and DECLINE groups with respect to SDM demographics, perceived severity of illness of the patient, or the research study approach. The most common reasons for providing consent were potential for research to help others (91%), research is important for medical progress (88%), and trust in the medical team (87%). The most common reasons for declining consent were SDM was too anxious to consider research (67%), fear that patient would receive experimental treatment (37%), and concern about risks of the study (33%). CONCLUSIONS: SDMs who agree to have a relative participate in an ICU research study are motivated by the potential benefit to the patient and altruism. SDMs who decline research participation, while not generally opposed to research, are fearful of study-related harm or discomfort for the patient, and are too anxious to consider a research study at that time.