Donation Care Work: Family Members' Contributions to Deceased Organ Donation Following Determination of Death Using...

Family members of potential deceased organ donors are often portrayed as gatekeepers to the individual experience of organ donation. We argue the success of deceased donation as an institution depends on often-unrecognised family labour that occurs after consent. Building on feminist notions of care work, we propose the concept of 'donation care work' to conceptualise the combination of emotion work, end-of-life care, and death work that family members perform to support efforts for donation while facing imminent loss. We interviewed 38 family members of potential deceased organ donors in Canada. Family member narratives revealed ongoing contributions throughout donation attempts, including managing uncertainty and reconciling difficult emotions before, during and after the donation attempt. Understanding family contributions to deceased donation as work introduces capacity for labour as a contributing factor potentially impacting willingness to consent. The concept of donation care work furthers the sociology of donation by offering a framework to map the essential efforts of family members and the institutional reliance on their labour, even when donation attempts do not lead to transplantable organs.