When Life Ceases—Relatives’ Experiences When a Family Member Is Confirmed Brain Dead and Becomes a Potential Organ Donor—A Literature Review

Abstract

Introduction Most healthcare professionals rarely experience situations of a request for organ donation being made to the patient’s family and need to have knowledge and understanding of the relatives’ experiences. Objective To describe relatives’ experiences when a family member is confirmed brain dead and becomes a potential organ donor. Methods A literature review and a thematic data analysis were undertaken, guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting process. A total of 18 papers, 15 qualitative and 3 quantitative, published from 2010 to 2019, were included. The electronic search was carried out in January 2019. Results The overarching theme When life ceases emerged as a description of relatives’ experiences during the donation process, including five subthemes: cognitive dissonance and becoming overwhelmed with emotions, interacting with healthcare professionals, being in a complex decision-making process, the need for proximity and privacy, and feeling hope for the future. The relatives had different needs during the donation process. They were often in shock when the declaration of brain death was presented, and the donation request was made, which affected their ability to assimilate and understand information. They had difficulty understanding the concept of brain death. The healthcare professionals caring for the patient had an impact on how the relatives felt after the donation process. Furthermore, relatives needed follow-up to process their loss. Conclusion Caring science with an explicit relative perspective during the donor process is limited. The grief process is individual for every relative, as the donation process affects relatives’ processing of their loss. We assert that intensive care unit nurses should be included when essential information is given, as they often work closest to the patient and her or his family. Furthermore, the relatives need to be followed up afterwards, in order to have questions answered and to process the grief, together with healthcare professionals who have insight into the hospital stay and the donation process.

Family bereavement and organ donation in Spain: a mixed method, prospective cohort study protocol

“…Subsequent studies have pointed to the need for further follow-up with relatives to answer their questions and process their grief. 6 Therefore, there is a clear need to update and expand what we know about the psychological impact that organ authorisation requests (as well as the outcome of organ authorisation) have on family members involved in the organ donation process. Due to high authorisation rates, analysing the donation experience of potential donors' relatives in Spain is of particular importance.…”

“…Subsequent studies have pointed to the need for further follow-up with relatives to answer their questions and process their grief. 6 …”

“…The family interview involves a complex decision-making process characterised by a great emotional burden,5 6 which could have a notable impact on the subsequent grieving process. In the existing literature, there is a discrepancy as to whether relatives’ decision to authorise donation can have an impact on the grieving process after the death of a loved one.…”

“…In contrast, none of the families of the 14 deceased who refused organ removal sought help. Subsequent studies have pointed to the need for further follow-up with relatives to answer their questions and process their grief 6…”

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care

“…With research in this context focussing on enabling informed decisions and increasing donation rates (Ashkenazi & Cohen, 2015 ; Marck et al, 2016 ), connections between in-hospital experiences and ongoing adjustment are under-explored, especially in relation to Donation after Circulatory Determination of Death (DCDD, Dimo, 2019 ; Naef et al, 2020 ; Sque et al, 2018 ; Takaoka et al, 2020 ; Zheng et al, 2020 ). Identifying and responding to family and staff needs in this complex environment are challenging tasks for HCPs (Kerstis & Widarsson, 2020 ; Shariff et al, 2017 ; Simonsson et al, 2020 ; Walker & Sque, 2019 ; Zellweger et al, 2017 ), highlighting the need for training to improve end-of-life care and peer support (Chan et al, 2020 ; Crawshaw et al, 2019 ; Witjes et al, 2017 , 2019a , 2019b ).…”