Context: The request process for eye and tissue donation is different from the process that families of organ donors experience, but the research into eye/tissue-only decision making has been sparse.
Objective: To determine the concerns of families approached over the phone for eye/tissue donations and to study the impact of the donor registry on those decisions.
Design, setting and participants: Written instrument filled out by family services coordinators while speaking with families about donation via phone in the San Diego, California, area during 2011.Main Outcome Measures-Responses marked on a 21-item instrument, contextual notes, donor registrations, and decisions made.
Results: With a 60% refusal rate, the most common reasons reported for declining donation are that the potential donor said during life he/she did not want to donate (26%) or that the family, not knowing the potential donor's wishes, opted not to donate (13%). Other specific reasons for not donating were as follows: wanting the body buried whole (8%), concerns about age and prior health (7%), and incompatibility with religion or culture (7%). Consenting families had different concerns: worries about delays (36%), the potential donors' age and health (25%), how the body might look for viewing (14%), the amount of paperwork (10%), for-profit status of beneficiaries (9%), international distribution (8%), and family disunity (8%). Registry-related refusals weighted against donations of tissues from registered donors amounted to a deficit of 92 potential donations. When donations lost to faulty assumptions based on public education are added, the deficit increases to 122 lost donations.