Families looking back: One year after discussion of withdrawal or withholding of life-sustaining support

Objective: To identify critical psychosocial supports and areas of conflict for families of intensive care unit (ICU) patients during decisions to withdraw or withhold life-sustaining treatment. Design: Cross-sectional survey. Setting: Six intensive care units in a tertiary care academic medical center. Participants: Forty-eight family members, one per case, of patients previously hospitalized in the ICU who had been considered for withdrawal or withholding of life-sustaining treatment. Interventions: None. Measurements and Main Results:Two raters coded transcripts of audiotaped interviews with family members about their experiences in the ICU and the decision-making process for withdrawing or withholding life-sustaining treatment. Codes identified sources of conflict and personal, institutional, and staff supports on which families relied during the decision-making process. Forty-six percent of respondents perceived conflict during their family member's ICU stay; the vast majority of conflicts were between themselves and the medical staff and involved communication or perceived unprofessional behavior (such as disregarding the primary caregiver in treatment discussions). Sixty-three percent of family members previously had spoken with the patient about his or her end-of-life treatment preferences, which helped to lessen the burden of the treatment decision, Forty-eight percent of family members reported the reassuring presence of clergy, and 27% commented on the need for improved physical space to have family discussion and conferences with physicians. Forty-eight percent of family members singled out their attending physician as the preferred source of information and reassurance. Conclusions: Many families perceived conflict during end-of-life treatment discussions in the ICU, Conflicts centered on communication and behavior of staff. Families identified pastoral care and prior discussion of treatment preferences as sources of psychosocial support during these discussions. Families sought comfort in the identification and contact of a "doctor-in-charge.'' ICU policies such as family conference rooms and lenient visitation accommodate families during end-of-life decision-making.