title: Decision making on organ donation: the dilemmas of relatives of potential brain dead donors.
abstract: BACKGROUND
  This article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.
  
  
  METHODS
  A content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.
  
  
  RESULTS
  Three themes were identified: 'conditions', 'ethical considerations' and 'look back'. Conditions were: 'sense of urgency', 'incompetence to decide' and 'agreement between relatives'. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased's body, especially when they do not know his/her preference. Donor families respect the deceased's last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments (lack of time, information etc.). Some non-donor families would like to be supported during decision-making.
  
  
  CONCLUSIONS
  The discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants (most non-donor families) stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased's wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.
  
  
  CONCLUSIONS
  Discrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation.
authors.affiliation: Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands. jack.degroot@radboudumc.nl.|Department of Spiritual and Pastoral Care 20, Radboud university medical center, PO Box 9101, 6500 HB, 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, Nijmegen, The Netherlands. marline.vanhoek@radboudumc.nl.
authors.forename: Maria
authors.initials: M
authors.lastname: van Hoek
authors.affiliation: Department of Intensive Care Medicine, Radboud university medical center, Nijmegen, The Netherlands. astrid.hoedemaekers@radboudumc.nl.
authors.forename: Cornelia
authors.initials: C
authors.lastname: Hoedemaekers
authors.affiliation: Department of Nephrology, Radboud university medical center, Nijmegen, The Netherlands. andries.hoitsma@radboudumc.nl.
authors.forename: Andries
authors.initials: A
authors.lastname: Hoitsma
authors.affiliation: Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands. wim.smeets@radboudumc.nl.|Department of Spiritual and Pastoral Care 20, Radboud university medical center, PO Box 9101, 6500 HB, Nijmegen, The Netherlands. wim.smeets@radboudumc.nl.
authors.forename: Wim
authors.initials: W
authors.lastname: Smeets
authors.affiliation: Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands. myrra.vernooij-dassen@radboudumc.nl.|Kalorama Foundation, Nijmegen, The Netherlands. myrra.vernooij-dassen@radboudumc.nl.
authors.forename: Myrra
authors.initials: M
authors.lastname: Vernooij-Dassen
authors.affiliation: Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands. evert.vanleeuwen@radboudumc.nl.
authors.forename: Evert
authors.initials: E
authors.lastname: van Leeuwen
mesh_terms: D000328:Adult; D001926:Brain Death; D002648:Child; D003657:Decision Making / Q000941:ethics*; D004644:Emotions; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D036301:Qualitative Research; D014019:Tissue Donors / Q000941:ethics; D009927:Tissue and Organ Procurement / Q000941:ethics* / Q000379:methods