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OBJECTIVES: The purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts.
BACKGROUND: There 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.
METHODS: Part 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.
RESULTS: Patients 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.
CONCLUSIONS: Loss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed.
