• Jack de Groot, Maria van Hoek, Cornelia Hoedemaekers, Andries Hoitsma, Hans Schilderman, Wim Smeets, Myrra Vernooij-Dassen, and Evert van Leeuwen.
• Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.
• Bmc Med Ethics. 2016 Jul 11; 17 (1): 38.

BackgroundIn the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.MethodsA content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.ResultsRelatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.ConclusionHealthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

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