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. 2016 Jul 11;17(1):38.
doi: 10.1186/s12910-016-0120-6.

Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives

Jack de Groot  1   2 , Maria van Hoek  3 , Cornelia Hoedemaekers  4 , Andries Hoitsma  5 , Hans Schilderman  6 , Wim Smeets  3   7 , Myrra Vernooij-Dassen  3   8 , Evert van Leeuwen  3
Affiliations

Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives

Jack de Groot et al. BMC Med Ethics. .

Abstract

Background: 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.

Methods: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.

Results: 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.

Conclusion: 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.

Keywords: Decision making by proxies; Donor registration; Ethics; Informational needs; Organ transplantation; Professional-family relations.

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Figures

Fig. 1
Fig. 1
Saturation of codes in interviews
Fig. 2
Fig. 2
Code tree
Fig. 3
Fig. 3
General model showing factors that influence the decision process for organ donation of relatives. General model. A participant who has to choose between (left) donation refusal or (right) consent to DBD (or DCD, when they had reasons to refuse DBD). Beneath the signpost, all factors are listed that could contribute to consent or refusal to consent to donation in absence of the registered preference of the deceased: top the healthcare-related factors, bottom the relative-related factors. Abbreviations: DCD = donation after circulatory death; DBD = donation after brain death; OD = organ donation
Fig. 4
Fig. 4
Model of factors influencing the decision towards refusal of consent for donation, although the deceased was in favour of organ donation. Model for families who did not comply with the deceased’s preferences (type B, see Table 2). Important factors are denoted in bold script, absent factors in faded script. Abbreviations: DCD = donation after circulatory death; DBD = donation after brain death; OD = organ donation
Fig. 5
Fig. 5
Model of factors that influence the decision towards consent for DCD, whilst DBD was possible, although the deceased was in favour of organ donation. Model for families who did not completely comply with the deceased’s preferences (type D, see Table 2). Important factors are denoted in bold script, absent factors in faded script. Abbreviations: DCD = donation after circulatory death; DBD = donation after brain death; OD = organ donation
Fig. 6
Fig. 6
Model of factors that influence the decision towards consent for DBD, whilst the preference of the deceased on organ donation was unknown. Model for families who did not know the deceased’s preferences and gave consent for organ donation (type E, see Table 2). Important factors are denoted in bold script, absent factors in faded script. Abbreviations: DCD = donation after circulatory death; DBD = donation after brain death; OD = organ donation
Fig. 7
Fig. 7
Model of factors that influence the decision towards refusal of consent for donation, whilst the preference of the deceased on organ donation was unknown. Model for families who not know the deceased’s preference and refused consent for donation (type F, see Table 2). Important factors are denoted in bold script, absent factors in faded script. Abbreviations: DCD = donation after circulatory death; DBD = donation after brain death; OD = organ donation
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