My Loved One Was Not an Organ Donor: Ethical Dilemmas for Family Members of Deceased Potential Donors When Making the Decision on Donation

Abstract

Objective: The study focuses on the experience of family members of deceased potential donors in deciding to refuse donation when their loved one had expressed his or her wish in life not to donate organs and tissues for transplantation.

Method: This is a qualitative study that uses social phenomenology as the theoretical reference, interviewing 8 family members of deceased potential donors.

Results: The family members' experiences were represented by the following categories: beliefs related to donation, fear in the face of the loved one's death, and the ethical dilemma of deciding to refuse the donation. The meaning of the refusal to donate was represented by the following categories: respect for the loved one's wishes and the family's peace of mind with the decision.

Conclusions: The study shed light on the experience of family members of deceased potential donors in making the decision to refuse donation. The concerns that motivate refusal were elucidated and the meanings of the decision's intentionality were unveiled. The resulting knowledge about these families' experiences provides backing for experts in donation and transplantation who work in different realities, pointing to strategies for improving care for such family members.