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

Autor: Evert van Leeuwen, Maria E.C. van Hoek, Cornelia W. E. Hoedemaekers, Andries J. Hoitsma, Jack de Groot, Myrra Vernooij-Dassen, Hans Schilderman, Wim Smeets
Rok vydání: 2016
Předmět:
Male
Alzheimer`s disease Donders Center for Medical Neuroscience [Radboudumc 1]
Decision making by proxies
Health (social science)
Emotions
Alternative medicine
030230 surgery
0302 clinical medicine
Registries
030212 general & internal medicine
Qualitative Research
Netherlands
media_common
Health Policy
Middle Aged
Circulatory death
Tissue Donors
humanities
Death
Feeling
Donation
Informational needs
Female
Advance Directives
Social psychology
Research Article
Adult
Brain Death
medicine.medical_specialty
Tissue and Organ Procurement
Adolescent
media_common.quotation_subject
Decision Making
Donor registration
Other Research Radboud Institute for Molecular Life Sciences [Radboudumc 0]
Professional-family relations
Health(social science)
Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18]
Young Adult
03 medical and health sciences
medicine
Humans
Family
Organ donation
Aged
Ethics
Center for Religion and Contemporary Society (CRCS)
Organ transplantation
business.industry
Issues
ethics and legal aspects
Attitude
Philosophy of medicine
Family medicine
Renal disorders Radboud Institute for Health Sciences [Radboudumc 11]
business
Bereavement
Qualitative research
Zdroj: BMC Medical Ethics
BMC Medical Ethics, 17
ISSN: 1472-6939
DOI: 10.1186/s12910-016-0120-6
Popis: 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. Electronic supplementary material The online version of this article (doi:10.1186/s12910-016-0120-6) contains supplementary material, which is available to authorized users.
Databáze: OpenAIRE
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