Telephone requests for donation: concerns expressed by families and the impact of the donor registry.

ABSTRACT

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.