Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe

• Published in: Transplantation reviews (Philadelphia, Pa.) Vol. 36; no. 1; p. 100673
• Main Authors: Molina-Pérez, Alberto, Delgado, Janet, Frunza, Mihaela, Morgan, Myfanwy, Randhawa, Gurch, de Wijdeven, Jeantine Reiger-Van, Schicktanz, Silke, Schiks, Eline, Wöhlke, Sabine, Rodríguez-Arias, David
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-01-2022
• Subjects: Attitude; Decision Making; Europe; Family; Family decision-making; Family overrule; Health policy; Humans; Organ donation; Organ Transplantation; Policy; Public views; Tissue and Organ Procurement; Tissue Donors; Europe; Organ donation; Public views; Family decision-making; Family overrule; Health policy; Europe
• ISSN: 0955-470X; 1557-9816
• DOI: 10.1016/j.trre.2021.100673

To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe.
A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection were performed by two or more independent reviewers for each record.
Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background.
Public views on the authority of the family in organ donation decision-making requiere further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation.
•First systematic review on public views on the family's role in organ donation.•A majority of the public supports the family's role as a surrogate decision maker.•Public attitudes towards the family overrule (veto) of consent are ambivalent.