donation with efforts to “encourage discretion and sensitivity with respect to the circumstances, views, and beliefs of the families of potential donors” (42 U.S.C. Sect. 482.45).
Many families are interested in the option to donate organs and tissues. The current practice of non-heart-beating organ procurement has been influenced by family requests for organ donation to take place after the withdrawal of life-sustaining treatment. Organ procurement organizations that engage in non-heart-beating organ procurement report that their efforts have been stimulated by family requests. This information has been reported in the literature as well (DeVita et al., 1993).
The committee placed a high priority on learning at first hand the feelings, attitudes and experiences of non-heart-beating donor and nondonor families. As far as the committee was able to determine, no studies have yet been published on non-heart-beating donor families. Minimal information is available on families who seek non-heart-beating donation, or families who decide against it. Published studies deal with the general characteristics of donor families (Bartucci, 1987; Batten and Prottas, 1987; Pearson et al., 1995), or donor and nondonor families (DeJong et al., 1998), in the more usual situation of death by neurological criteria.
The committee was unable to locate family members who declined non-heart-beating donation. In general, non-heart-beating donation is offered as an option only after the family has expressed interest in having donation take place. At this time, there is no readily accessible pool of families who have considered and declined this option.
One father whose son became a non-heart-beating donor declined to participate in the workshop. Strongly committed to organ and tissue donation and to the non-heart-beating option, he preferred to devote his efforts to raising public awareness of donation, rather than to the activities of this workshop. A legal review of in situ organ preservation and rapid organ recovery reports on his experiences with his son’s donation (Braun and Drobny, 1998).
Two families who wished to donate a family member’s organs and tissues but were unable to do so because of the lack of a protocol were willing to participate in the workshop. They wished to share their regret at being unable to donate, and to help make this option possible for other families. In one case, parents sought to donate their son’s organs and tissues after he was struck by a car and critically injured. Their interest in donation was particularly acute since this was their only surviving child. A younger son had been killed two years earlier in a skiing accident.
Paramedics responded to the scene where our son needed cardiopulmonary resuscitation (CPR) and ventilation. Within hours of getting him to the hospital, we were faced with several decisions. Tests revealed no blood flow to his brain