Perceived Support Among Families Deciding About Organ Donation for Their Loved Ones: Donor Vs Nondonor Next Of Kin

Abstract

Background Families’ experiences in the hospital influence their decisions about donating organs of brain-dead relatives. Meeting families’ support needs during this traumatic time is an obligation and a challenge for critical care staff. Objectives (1) To elicit family members’ accounts of various types of support received and perceived quality of care for themselves and their loved ones when they made the donation decision, and (2) to examine the relationship between these factors and the families’ donation decision. Methods Retrospective telephone interviews of 199 families from different regions of the country were completed. Aside from demographic data, the survey addressed perceptions of informational, emotional, and instrumental support and quality of care. Results One hundred fifty-four study participants consented to donation; 45 declined. White next of kin were significantly more likely than African Americans to consent. Specific elements of reported support were significantly associated with consent to donate. Donor and nondonor families had differing perceptions of quality care for themselves and their loved ones. Receiving understandable information about organ donation was the strongest predictor of consent. Conclusions Specific supportive behaviors by staff as recounted by family members of potential donors were significantly associated with consent to donation. These behaviors lend themselves to creative training and educational programs for staff. Such interventions are essential not only for next of kin of brain-dead patients, but also for staff and ultimately for the public as a whole.