Parental experiences and recommendations in donation after circulatory determination of death*.

OBJECTIVE

To describe parents' experience of organ donation decision making in the case of donation after circulatory determination of death.

DESIGN

Qualitative exploratory analysis.

SETTING

Participants were recruited from the ICU of a single children's hospital located in the western United States.

PARTICIPANTS

Thirteen parents, 11 families who consented to donate their child's organs.

INTERVENTIONS

Interviews (average 82 min).

MEASUREMENTS AND MAIN RESULTS

Transcribed interviews were analyzed using the constant comparative method to identify themes that reflected similarities in parents' experiences. The themes we found included 1) factors contributing to parental decision making, 2) under the circumstances of the child dying, and 3) donation decision and its impact on parental grief. Factors that influenced the decision making all related to the child dying, including protecting the child's body and helping the child to die peacefully. Finally, parents made recommendations about the organ donation process, including empathy, attend to end-of-life concerns, and the provision of relevant information for donation decisions.

CONCLUSIONS

Parents' decision making was related directly to end-of-life experience and grief process. Providers need to orient to parents' end-of-life concerns to support parents' decision-making process and improve donation after circulatory determination of death procedures.