A narrative review of family members’ experience of organ donation request after brain death in the critical care setting

Introduction: Family members of critically ill patients suffer from high levels of anxiety and depression in the ICU, and are at risk of developing post-ICU syndrome following ICU discharge. In the case of brain death, and potential organ donation, the family is at the center of the decision process: within a limited time frame, the family will be informed that the patient is brain-dead and will be approached about potential organ donation. Materials and methods: Family experience with organ donation has been the topic of several research papers allowing one to gain knowledge about family members’ experience of organ donation, emphasizing specific needs, adequate support, and pointing out gaps in current delivery of family-centered care. In this narrative review, experts, clinicians, and researchers present the various legal systems regarding family implication in organ donation decisions; describe factors that influence the decision-making process; highlight family perspectives of care and respect for potential donors in the ICU environment; describe the impact of organ donation discussions and decisions on post-ICU syndrome; and suggest communication skills and support to be developed in the future. A research agenda for the next decade is also encouraged. Conclusion: Overall, challenges remain and concern all persons involved in the process, ICU doctors and nurses, the organ procurement organization, family members, and, in some cases, the patients themselves. Looking at the big picture will provide opportunities for further improvements.