Organ donation after death determination by circulatory criteria: family members' experiences with withdrawal of life-sustaining measures in Canadian intensive care units.

Purpose: Donation after death determination by circulatory criteria (DCC) is an option currently available for imminently dying patients who do not meet neurologic criteria for death. When organ donation is not successful following withdrawal of life-sustaining measures (WLSM), family members may experience additional feelings of loss and bereavement. In this study, we sought to explore the lived experiences of family members who consented to donation after DCC, including families whose loved ones proceeded to donation and those for whom donation was not possible.

Methods: We conducted a qualitative study using semi-structured interviews with family members whose loved ones agreed to donation after DCC and underwent WLSM in Canadian intensive care units. We recruited participants from all Canadian provinces with an organ donation organization (n = 10) and analyzed themes using a modified grounded theory approach.

Results: Interviews with 79 family members of 78 potential donors with DCC revealed nine main themes as important in the context of WLSM in DCC: 1) early and repetitive communication, 2) predicting time of death (after WLSM), 3) invitation to witness WLSM, 4) family agency in donation after DCC (e.g., wishing they had been able to take some action and/or exert more control), 5) environment, 6) support, 7) honouring donor/meaning making, 8) guilt, and 9) triple loss (i.e., death, unsuccessful donation, and loss for recipients).

Conclusion: In this qualitative study, we identified a range of experiences among family members in the context of WLSM in DCC. Among those, we found family involvement in the WLSM and the DCC process to be very important. Family member perspectives on organ donation are essential to guide practices that can support consistent, high-quality family-centred care in this context.