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

Goal To assess public knowledge and attitudes towards the role of the family in deceased organ donation in Europe. Methods A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science. These databases were last searched on December 15th, 2017. Eligibility criteria were empirical studies conducted in Europe from 2008 to 2017 and 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. Each record was screened by two or more independent reviewers in three phases. Data collection from each report was performed by two or more independent reviewers. Results Of the 1,482 results, 467 reports were assessed in full-text form, and 33 were included in this synthesis. Studies show that a majority of the public support the family’s involvement in organ retrieval decision-making and, in particular, their role as surrogate decision-maker when the deceased has expressed no preference. Conclusions A common conceptual framework and validated well-designed questionnaires are needed to address the role of the family in future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation.