Family Responses to Donor Designation in Donation Cases: A Longitudinal Study

Abstract

Context A 2001 state law reinforced donors' rights by mandating that donor consent be strictly honored. One concern was the potentially negative impact of donor designation notification on donor families. Objectives To examine donor families' responses to donor designation. Design Descriptive nonexperimental design spanning July 1999 to September 2004. Setting State served by organ procurement organization. Data Results from surveys completed by 569 donor families, including 162 surveys from designated donor families. Main Outcome Measures Previous discussions, designation awareness, information helpful, information stress, awareness of meaning of donation, and comfort with designation decision. Results The majority (79%) of designated donor families reported their loved ones had discussed donation with them; of these families, 86% were aware of donor designation, and 83% understood what donation entailed. The majority (75%) thought information about loved ones' donor designation was helpful, and only 8% found it stressful. In contrast, 18% of families of nondesignated donors said being approached about donation was stressful after the law was strengthened. However, over 80% of all donor families were comfortable with the donation decision. Conclusions The results fail to support the assumption that donor families perceive donor designation notification as negative and stressful. The majority of designated donor families report relief and reduced stress, compared to families approached for donation. The findings suggest that strengthening donor designation legislation can lead to positive results for donor families and donation recipients.