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Canadian Journal of Anesthesia/Journal canadien d'anesthésie

Published in:

20-11-2023 | Reports of Original Investigations

Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study

Authors: Robin Urquhart, PhD, Jessica Vickery, BSc, Cynthia Kendell, MSc, Jade Dirk, BSc, Stephen Beed, MD

Published in: Canadian Journal of Anesthesia/Journal canadien d'anesthésie | Issue 3/2024

Abstract

Purpose

In 2021, Nova Scotia, Canada, became the first jurisdiction in North America to adopt a deemed consent organ donation system under its revised Human Organ and Tissue Donation Act. This study sought to understand the early experiences of program staff and clinicians involved in implementing this legislation.

Methods

We conducted semistructured interviews with members of the provincial organ donation program and intensive care unit and emergency department clinicians (n = 14). Two investigators coded transcripts of interviews, then categorized the coded data into themes.

Results

We identified four key themes: 1) legislation has limited impact on daily practice; 2) legislation does not address existing barriers; 3) legislation aids conversations with donor families; and 4) legislation should provide more autonomy to patients and families, not less.

Conclusion

Deemed consent legislation had limited impact on clinician’s day-to-day practices, because of lack of infrastructure changes and infrequent donation opportunities. Nevertheless, participants felt the introduction of deemed consent in Nova Scotia eased conversations between families of potential donors and clinicians. These findings should be used to inform ongoing implementation of deemed consent and be considered by those contemplating similar legislative changes.

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Global Observatory on Donation and Transplantation. WHO-ONT. Available from URL: http://www.transplant-observatory.org/ (accessed August 2023).

Government of Alberta. Organ and tissue donation in Alberta. Available from URL: https://myhealth.alberta.ca/alberta/Pages/organ-and-tissue-donation-topic-overview.aspx (accessed August 2023).

Canadian Institute for Health Information. Summary statistics on organ transplants, wait-lists and donors; 2023. Available from URL: https://www.cihi.ca/en/summary-statistics-on-organ-transplants-wait-lists-and-donors (accessed August 2023).

Government of Canada. Blood, organ and tissue donation. Available from URL: https://www.canada.ca/en/public-health/services/healthy-living/blood-organ-tissue-donation.html (accessed August 2023).

Library of Parliament. Consent for organ donation in Canada; 2021. Available from URL: https://hillnotes.ca/2021/10/25/consent-for-organ-donation-in-canada/ (accessed August 2023).

Rithalia A, McDaid C, Suekarran S, Myers L, Sowden A. Impact of presumed consent for organ donation on donation rates: a systematic review. BMJ 2009; 338: a3162. https://doi.org/10.1136/bmj.a3162CrossRefPubMedPubMedCentral

English V. Is presumed consent the answer to organ shortages? Yes. BMJ 2007; 334: 1088. https://doi.org/10.1136/bmj.39199.475301.adCrossRefPubMed

Province of Nova Scotia. Organ and tissue donation law now in effect; 2021. Available from URL: https://novascotia.ca/news/release/?id=20210118001 (accessed August 2023).

Krmpotic K, Isenor C, Beed S. Deceased organ donation in Nova Scotia: presumed consent and system transformation. Healthc Manage Forum 2020; 33: 210–3. https://doi.org/10.1177/0840470420919129CrossRefPubMed

10.

Noyes J, McLaughlin L, Morgan K, et al. Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study. BMJ Open 2019; 9: e025159. https://doi.org/10.1136/bmjopen-2018-025159CrossRefPubMedPubMedCentral

11.

Madden S, Collett D, Walton P, et al. The effect on consent rates for deceased organ donation in Wales after the introduction of an opt‐out system. Anaesthesia 2020; 75: 1146–52. https://doi.org/10.1111/anae.15055CrossRefPubMedPubMedCentral

12.

Shaw D. Presumed evidence in deemed consent to organ donation. J Intensive Care Soc 2019; 19: 2–3. https://doi.org/10.1177/1751143717734694CrossRef

13.

Mc Laughlin L, Noyes J, Morgan K, Walton P, Roberts A, Stephens M. Family attitudes, actions, decisions and experiences following implementation of deemed consent and the Human Transplantation Act (Wales) 2013. Transplantation 2018; 102: S288. https://doi.org/10.1097/01.tp.0000542991.08889.0e

14.

Miller J, Currie S, McGregor LM, O’Carroll RE. ‘It’s like being conscripted, one volunteer is better than 10 pressed men’: a qualitative study into the views of people who plan to opt-out of organ donation. Br J Health Psychol 2020; 25: 257–74. https://doi.org/10.1111/bjhp.12406CrossRefPubMedPubMedCentral

15.

Welsh Government. Wales leading the way on organ donation. Available from URL: https://gov.wales/wales-leading-way-organ-donation (accessed August 2023).

16.

Jansen NE, Williment C, Haase-Kromwijk BJ, Gardiner D. Changing to an opt out system for organ donation—reflections from England and Netherlands. Transpl Int 2022; 35: 10466. https://doi.org/10.3389/ti.2022.10466CrossRefPubMedPubMedCentral

17.

International Registry on Organ Donation and Transplantation. Database: France. Available from URL: https://www.irodat.org/?p=database&c=FR&year=2019#data (accessed August 2023).

18.

Quigley M, Brazier M, Chadwick R, Michel MN, Paredes D. The organs crisis and the Spanish model: theoretical versus pragmatic considerations. J Med Ethics 2008; 34: 223–4. https://doi.org/10.1136/jme.2007.023127CrossRefPubMed

19.

Csillag C. Brazil abolishes ‘presumed consent’ in organ donation. Lancet 1998; 352: 1367. https://doi.org/10.1016/s0140-6736(05)60767-2CrossRefPubMed

20.

Etheredge HR. Assessing global organ donation policies: opt-in vs opt-out. Risk Manag Healthc Policy 2021; 14: 1985–98. https://doi.org/10.2147/rmhp.s270234CrossRefPubMedPubMedCentral

21.

Niven J, Chalmers N. Opt out organ donation: a rapid evidence review; 2018. Available from URL: https://www.gov.scot/publications/opt-out-organ-donation-rapid-evidence-review/ (accessed August 2023).

22.

Patel D. Organ donation: UK learns from international experience on presumed consent. Available from URL: https://www.ibanet.org/article/b6f71d2a-5213-4a23-ba59-66725a132d87 (accessed August 2023).

23.

Nova Scotia Legislature. Bill 133: Human Organ and Tissue Donation Act; 2019. Available from URL: https://nslegislature.ca/legc/bills/63rd_2nd/1st_read/b133.htm (accessed August 2023).

24.

Sandelowski M. Whatever happened to qualitative description? Res Nurs Health 2000; 23: 334–40. https://doi.org/10.1002/1098-240x(200008)23:4%3C334::aid-nur9%3E3.0.co;2-gCrossRefPubMed

25.

Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci 2009; 4: 50. https://doi.org/10.1186/1748-5908-4-50CrossRefPubMedPubMedCentral

26.

Atkins L, Francis J, Islam R, et al. A guide to using the Theoretical Domains Framework of behaviour change to investigate implementation problems. Implement Sci 2017; 12: 77. https://doi.org/10.1186/s13012-017-0605-9CrossRefPubMedPubMedCentral

27.

Parsons JA. Deemed consent for organ donation: a comparison of the English and Scottish approaches. J Law Biosci 2021; 8: https://doi.org/10.1093/jlb/lsab003

28.

Arshad A, Anderson B, Sharif A. Comparison of organ donation and transplantation rates between opt-out and opt-in systems. Kidney Int 2019; 95: 1453–60. https://doi.org/10.1016/j.kint.2019.01.036CrossRefPubMed

29.

Bea S. Opt-out policy and the organ shortage problem: critical insights and practical considerations. Transplant Rev (Orlando) 2021; 35: 100589. https://doi.org/10.1016/j.trre.2020.100589CrossRefPubMed

30.

Ahmad MU, Hanna A, Mohamed AZ, et al. A systematic review of opt-out versus opt-in consent on deceased organ donation and transplantation (2006–2016). World J Surg 2019; 43: 3161–71. https://doi.org/10.1007/s00268-019-05118-4CrossRefPubMed

31.

Weiss MJ, Dirk J. Deemed consent for deceased organ donation. CMAJ 2021; 193: E1008–9. https://doi.org/10.1503/cmaj.210621CrossRefPubMedPubMedCentral

32.

Sharif A. Presumed consent will not automatically lead to increased organ donation. Kidney Int 2018; 94: 249–51. https://doi.org/10.1016/j.kint.2018.04.020CrossRefPubMed

33.

Parsons JA, Moorlock G. A global pandemic is not a good time to introduce ‘opt-out’ for organ donation. Med Law Int 2020; 20: 155–66. https://doi.org/10.1177/0968533220950002CrossRef

34.

Prabhu PK. Is presumed consent an ethically acceptable way of obtaining organs for transplant? J Intensive Care Soc 2019; 20: 92–7. https://doi.org/10.1177/1751143718777171CrossRefPubMed

35.

Tennankore KK, Klarenbach S, Goldberg A. Perspectives on opt-out versus opt-in legislation for deceased organ donation: an opinion piece. Can J Kidney Health Dis 2021; 8: https://doi.org/10.1177/20543581211022151

36.

Canadian Blood Services. Public awareness—OTDT public opinion polling; 2021. Available from URL: https://professionaleducation.blood.ca/en/organs-and-tissues/practices-guidelines-and-initiatives/current-projects/public-awareness-otdt (accessed August 2023).

37.

Canseco M. Canadians back opt-out system for organ and tissue donation; 2019. Available from URL: https://researchco.ca/2019/08/21/its-all-about-joy-that-comes-out-of-sorrow/ (accessed August 2023).

38.

El-Dassouki N, Wong D, Toews DM, et al. Barriers to accessing kidney transplantation among populations marginalized by race and ethnicity in Canada: a scoping review part 1—Indigenous communities in Canada. Can J Kidney Health Dis 2021; 8: https://doi.org/10.1177/2054358121996835

Title: Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study
Authors: Robin Urquhart, PhD
Jessica Vickery, BSc
Cynthia Kendell, MSc
Jade Dirk, BSc
Stephen Beed, MD
Publication date: 20-11-2023
Publisher: Springer International Publishing
Published in: Canadian Journal of Anesthesia/Journal canadien d'anesthésie / Issue 3/2024
Print ISSN: 0832-610X
Electronic ISSN: 1496-8975
DOI: https://doi.org/10.1007/s12630-023-02646-5

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study

Abstract

Purpose

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

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