Expectations of a new opt-out system of consent for deceased organ donation in England: A qualitative interview study

Introduction: In 2020 England moved to an opt-out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased-donor and living-donor transplantation, and views on media campaigns regarding the law change. Methods: We undertook in-depth qualitative interviews with people with kidney disease (n = 13), their family members (n = 4) and healthcare practitioners (n = 15). Purposive sampling was used to ensure diversity for patients and healthcare practitioners. Family members were recruited through snowball sampling and posters. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Results: Three themes with six subthemes were identified: (i) Expectations of impact (Hopeful patients; Cautious healthcare professionals), (ii) Living-donor transplantation (Divergent views; Unchanged clinical recommendations), (iii) Media campaigns (Single message; Highlighting recipient benefits). Patients expected the law change would result in more deceased-donor transplant opportunities. Conclusions: Clinicians should ensure patients and families are aware of the current evidence regarding the impact of opt-out consent: expectations of an increased likelihood of receiving a deceased-donor transplant are not currently supported by the evidence. This may help to prevent a decline in living-donor transplantation seen in other countries with similar legislation. Media campaigns should include a focus on the impact of organ receipt.

Citation

Bailey, P. K., Lyons, H., Caskey, F. J., Ben-Shlomo, Y., Al-Talib, M., Babu, A., & Selman, L. E. (2022). Expectations of a new opt-out system of consent for deceased organ donation in England: A qualitative interview study. Health expectations : an international journal of public participation in health care and health policy, 25(2), 607–616. https://doi.org/10.1111/hex.13394

DOI

10.1111/hex.13394

URI

https://hdl.handle.net/20.500.14709/894

Usage rights

CC BY 4.0

License

https://creativecommons.org/licenses/by/4.0/