Donor families, distinctive secondary losses, and "second death" experiences

Abstract

Communication between donor families and the recipients of their loved ones' organs and tissues is a relatively new area of study. The National Kidney Foundation founded the National Donor Family Council in 1992 as a home for donor families. One of several items addressed by the Council was guidelines for communication, supporting the rights of donor families and recipients to communicate and build relationships should they choose to do so. Donation and transplant agencies play a strong role in facilitating and supporting donor families and recipients with these unique new relationships. This article offers 3 case examples of distinctive secondary losses and "second death" experiences encountered by some donor family members when the donation of tissues or organs they have authorized could not be used for transplantation, when those grafts fail or are rejected, or when the recipient dies. On that basis, the article explores the nature of these experiences and some reasons why they occur. Initial recommendations about how to address these experiences are provided. Finally, a 4-part agenda is suggested for research about (1) the nature of these distinctive secondary loss and second death experiences encountered by some donor families; (2) communications between donation and transplant professionals, on the one hand, and potential and actual donor family members, on the other hand; (3) the education, training, and support of professionals who provide bereavement support to donor family members; and (4) a review of the National Communication Guidelines.