Skip to main content
SpringerLink
Log in

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

Premières expériences suivant la nouvelle législation sur le consentement présumé pour le don d’organes en Nouvelle-Écosse : une étude qualitative

  • Reports of Original Investigations
  • Published:
Canadian Journal of Anesthesia/Journal canadien d'anesthésie Aims and scope Submit manuscript

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.

Résumé

Objectif

En 2021, la Nouvelle-Écosse, au Canada, est devenue la première juridiction nord-américaine à adopter un système de don d’organes avec consentement présumé dans le cadre de sa version révisée de la Loi sur le don d’organes et de tissus humains. Cette étude visait à comprendre les premières expériences du personnel du programme et des clinicien·nes participant à la mise en œuvre de cette loi.

Méthode

Nous avons mené des entrevues semi-structurées avec des membres du programme provincial de don d’organes, ainsi qu’avec des clinicien·nes de l’unité de soins intensifs et des services d’urgence (n = 14). Deux personnes de l’équipe de recherche ont codé les transcriptions des entrevues, puis ont classé les données codées en thèmes.

Résultats

Nous avons identifié quatre thèmes clés : 1) la législation a un impact limité sur la pratique quotidienne; 2) la législation ne s’attaque pas aux obstacles existants; 3) la législation facilite les conversations avec les familles des donneurs et donneuses; et 4) la législation devrait accorder plus d’autonomie aux patient·es et aux familles, et non moins.

Conclusion

La législation sur la présomption de consentement a eu une incidence limitée sur les pratiques quotidiennes des cliniciennes et cliniciens, en raison du manque de changements à l’infrastructure et des possibilités de dons peu fréquentes. Néanmoins, les participant·es ont estimé que l’introduction du consentement présumé en Nouvelle-Écosse facilitait les conversations entre les familles des donneurs et donneuses potentiel·les et les clinicien·nes. Ces constatations devraient être utilisées pour éclairer la mise en œuvre continue de la présomption de consentement et être prises en compte par les autorités qui envisagent des modifications législatives similaires.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

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

  2. 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).

  3. 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).

  4. 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).

  5. 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).

  6. 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.a3162

    Article  PubMed  PubMed Central  Google Scholar 

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

    Article  PubMed  Google Scholar 

  8. 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).

  9. 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/10.1177/0840470420919129

    Article  PubMed  Google Scholar 

  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-2018-025159

    Article  PubMed  PubMed Central  Google Scholar 

  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.15055

    Article  CAS  PubMed  PubMed Central  Google Scholar 

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

    Article  Google Scholar 

  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.12406

    Article  PubMed  PubMed Central  Google Scholar 

  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.2022.10466

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  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.2007.023127

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  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.s270234

    Article  PubMed  PubMed Central  Google Scholar 

  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-g

    Article  CAS  PubMed  Google Scholar 

  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/10.1186/1748-5908-4-50

    Article  PubMed  PubMed Central  Google Scholar 

  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/s13012-017-0605-9

    Article  PubMed  PubMed Central  Google Scholar 

  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.2019.01.036

    Article  PubMed  Google Scholar 

  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.2020.100589

    Article  PubMed  Google Scholar 

  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/s00268-019-05118-4

    Article  PubMed  Google Scholar 

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

    Article  PubMed  PubMed Central  Google Scholar 

  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.2018.04.020

    Article  PubMed  Google Scholar 

  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/10.1177/0968533220950002

    Article  Google Scholar 

  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/10.1177/1751143718777171

    Article  PubMed  Google Scholar 

  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

Download references

Author information

Authors and Affiliations

  1. Department of Community Health and Epidemiology, Faculty of Medicine, Dalhousie University, Room 413, Centre for Clinical Research, 5790 University Avenue, Halifax, NS, B3H 1V7, Canada

    Robin Urquhart PhD & Jessica Vickery BSc

  2. Department of Surgery, Dalhousie University, Halifax, NS, Canada

    Robin Urquhart PhD

  3. Department of Medicine, Dalhousie University, Halifax, NS, Canada

    Cynthia Kendell MSc

  4. Department of Research & Innovation, Nova Scotia Health, Halifax, NS, Canada

    Jade Dirk BSc

  5. Department of Critical Care, Dalhousie University, Halifax, NS, Canada

    Stephen Beed MD

Authors
  1. Robin Urquhart PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jessica Vickery BSc
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Cynthia Kendell MSc
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jade Dirk BSc
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Stephen Beed MD
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

Robin Urquhart contributed to all aspects of this manuscript, including study conception and design; acquisition, analysis, and interpretation of data; and drafting the article. Cynthia Kendell, Jade Dirk, and Stephen Beed contributed to study conception and design. Robin Urquhart and Jessica Vickery contributed to the acquisition and analysis of data. Jessica Vickery, Cynthia Kendell, Jade Dirk, and Stephen Beed contributed to the interpretation of data.

Corresponding author

Correspondence to Robin Urquhart PhD.

Ethics declarations

Disclosures

The authors have no competing interests to declare.

Funding statement

This study was funded by Health Canada as part of the Legislative Evaluation: Assessment of Deceased Donation Reform (LEADDR) project, which is a partnership between the Nova Scotia Health, the Nova Scotia Department of Health and Wellness, the Canadian Donation and Transplantation Research Program, Canadian Blood Services and Transplant Québec.

Editorial responsibility

This submission was handled by Dr. Alexis F. Turgeon, Associate Editor, Canadian Journal of Anesthesia/Journal canadien d’anesthésie.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (PDF 135 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Urquhart, R., Vickery, J., Kendell, C. et al. Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study. Can J Anesth/J Can Anesth 71, 400–407 (2024). https://doi.org/10.1007/s12630-023-02646-5

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12630-023-02646-5

Keywords

Search

Navigation