title: Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives.
abstract: In 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.
  
  
  
  A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.
  
  
  
  Relatives 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.
  
  
  
  Healthcare 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.
authors.affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.|Department of Spiritual and Pastoral Care, Radboud University Medical Center, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.
authors.forename: Jack
authors.initials: J
authors.lastname: de Groot
authors.affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands.
authors.forename: Maria
authors.initials: M
authors.lastname: van Hoek
authors.affiliation: Department of Intensive Care Medicine, Radboud University Medical Centre, Nijmegen, The Netherlands.
authors.forename: Cornelia
authors.initials: C
authors.lastname: Hoedemaekers
authors.affiliation: Department of Nephrology, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Andries
authors.initials: A
authors.lastname: Hoitsma
authors.affiliation: Faculty of Philosophy, Theology and Religious Studies, Radboud University Nijmegen, Nijmegen, The Netherlands.
authors.forename: Hans
authors.initials: H
authors.lastname: Schilderman
authors.affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands.|Department of Spiritual and Pastoral Care, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Wim
authors.initials: W
authors.lastname: Smeets
authors.affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands.|Kalorama Foundation, Nijmegen, The Netherlands.
authors.forename: Myrra
authors.initials: M
authors.lastname: Vernooij-Dassen
authors.affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands.
authors.forename: Evert
authors.initials: E
authors.lastname: van Leeuwen
mesh_terms: D000293:Adolescent; D000328:Adult; D016223:Advance Directives; D000368:Aged; D001290:Attitude; D001601:Bereavement; D001926:Brain Death; D003643:Death; D003657:Decision Making; D004644:Emotions; D005190:Family; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D036301:Qualitative Research; D012042:Registries; D014019:Tissue Donors; D009927:Tissue and Organ Procurement; D055815:Young Adult
keywords: Decision making by proxies; Donor registration; Ethics; Informational needs; Organ transplantation; Professional-family relations