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

de Groot J, van Hoek M, Hoedemaekers C, Hoitsma A, Schilderman H, Smeets W, Vernooij-Dassen M, van Leeuwen E - BMC Med Ethics (2016)

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.

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.

No MeSH data available.


Related in: MedlinePlus

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
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Fig3: 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

Mentions: Although this study has an exploratory character only, it can be used to develop a suggested model that combines all remarks as a kind of summary. It uses a metaphor and picture of the participants on the crossroad of their decision process (Fig. 3).Fig. 3


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

de Groot J, van Hoek M, Hoedemaekers C, Hoitsma A, Schilderman H, Smeets W, Vernooij-Dassen M, van Leeuwen E - BMC Med Ethics (2016)

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
© Copyright Policy - OpenAccess
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4940748&req=5

Fig3: 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
Mentions: Although this study has an exploratory character only, it can be used to develop a suggested model that combines all remarks as a kind of summary. It uses a metaphor and picture of the participants on the crossroad of their decision process (Fig. 3).Fig. 3

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Radboud Institute for Health Sciences, Radboud University Medical Center, DGVP 20, PO Box 9101, 6500, HB, Nijmegen, The Netherlands. Jack.deGroot@radboudumc.nl.

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.

No MeSH data available.


Related in: MedlinePlus