Grief and loss for patients before and after heart transplant

•Explores the often ignored area of grief for heart transplantation patients.•Details multiplicity of grief experiences before and after transplantation.•Links rhetoric of gratitude to silencing of grief experience in transplantation.•Posits a disenfranchisement of patient grief in heart transplantation.

ObjectivesThe purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts.BackgroundThere is much scholarship on loss and grief. Less attention has been paid to these issues in clinical transplantation, and even less on the patient experience.MethodsPart of a qualitative inquiry oriented to the work of Merleau-Ponty, a secondary analysis was carried out on audiovisual data from interviews with thirty participants.ResultsPatients experience loss and three forms of grief. Pre-transplant patients waiting for transplant experience loss and anticipatory grief related to their own death and the future death of their donor. Transplanted patients experience long-lasting complicated grief with respect to the donor and disenfranchised grief which may not be sanctioned.ConclusionsLoss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed.