Skip to main content
SpringerLink
Log in

The conceptual injustice of the brain death standard

  • Published:
Theoretical Medicine and Bioethics Aims and scope Submit manuscript

Abstract

Family disputes over the diagnosis of brain death have caused much controversy in the bioethics literature over the conceptual validity of the brain death standard. Given the tenuous status of brain death as death, it is pragmatically fruitful to reframe intractable debates about the metaphysical nature of brain death as metalinguistic disputes about its conceptual deployment. This new framework leaves the metaphysical debate open and brings into focus the social functions that are served by deploying the concept of brain death. In doing so, it highlights the epistemic injustice of medicolegal authorities that force people to uniformly accept brain death as a diagnosis of death based on normative considerations of institutional interests, such as saving hospital resources and organ supplies, rather than empirical evidence of brain death as death, which is insufficient at best and nonexistent at worst. In light of this injustice, I propose the rejection of the uniform standard of brain death in favor of a choice-based system that respects families’ individualized views of death.

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

Notes

  1. One might wonder if the circulatory criteria for death could also be perceived as promulgating conceptual injustice. Although the full conceptual analysis of and debate over circulatory death as death remains outside the scope of this paper, there is indeed tenuity in determining the ‘irreversible’ cessation of circulatory functions (e.g. does reperfusion of the heart after declaration of circulatory death for organ procurement count as the irreversible cessation of circulatory functions?) [38,39,40]. One could argue that the determination of circulatory death is subject to patients’ decisions to refuse chest compressions, extracorporeal membrane oxygenation (ECMO) and other normative reasons (often less related to ulterior institutional motives), thus making circulatory death a conceptual fiction. Regardless of the one’s views about circulatory death as fiction, circulatory death is widely accepted and less controversial than brain death, which has faced opposition from many families who have been wrongfully led to believe that their refusal to accept brain death is unscientific and medically untenable [3, 41,42,43]. The unique harms incurred by these families who have been forced to remove life-sustaining treatment from loved ones they believe were alive makes the application of conceptual injustice particular to the imposition of the brain death standard.

  2. If there is no diagnostic distinction, one might argue in favor of defaulting to a circulatory criterion of death and abolishing the dead-donor rule, which means that the diagnosis of brain death would never have to come into play for families to consider organ donation. However, this criteria excludes the beliefs of families who do believe in brain death and organ donation after death, and who would be forced to accept the conceptual mistruth that they are donating the organs of their ‘living’ loved one whom doctors refuse to declare (brain) dead: a process that will be as equally absurd, offensive, and traumatic as it is for families who are gaslit into believing their permanently unconscious loved ones are dead. Thus, the purpose of choice in the determination of death is not just a practical-legal matter, but also a socio-ethical and conceptual matter about respecting patients’ and families’ decisions to mark closure and choose how certain ‘death-functions’ are triggered, whether they be based on circulatory death or brain death.

References

  1. Truog, R.D. 2018. Lessons from the Case of Jahi McMath. Hastings Center Report 48 (S4): S70–S73. https://doi.org/10.1002/hast.96.1.

    Article  Google Scholar 

  2. Uniform Determination of Death Act. 1981. National Conference of Commissioners on Uniform State Laws

  3. Aviv R. 2018. What Does It Mean to Die? New Yorker. Published online January 29, 2018. https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die. Accessed May 9 2022.

  4. Evans E. 2016. After court rules against parents, toddler is taken off life support. Los Angeles Times. Published August 27, 2016. https://www.latimes.com/local/lanow/la-me-ln-toddler-life-support-20160826-snap-story.html. Accessed February 25 2023.

  5. McAndrew S. 2016.The contested death of Aden Hailu. Reno Gazette Journal. https://www.rgj.com/story/news/2016/03/25/contested-death-aden-hailu/82269006/ Accessed February 25, 2023.

  6. Pannett R. 2022. Parents lose battle to continue life support for 12-year-old in coma. Washington Post. Published July 26, 2022. https://www.washingtonpost.com/world/2022/07/26/uk-archie-battersbee-brain-injury-blackout-challenge/. Accessed February 25, 2023.

  7. Lewis, A., and D. Greer. 2017. Current controversies in brain death determination. Nature Reviews Neurology 13 (8): 505–509. https://doi.org/10.1038/nrneurol.2017.72.

    Article  Google Scholar 

  8. Bernat, J.L. 2005. The concept and practice of brain death. In Progress in Brain Research 150, 369–379. UK: Elsevier. https://doi.org/10.1016/S0079-6123(05)50026-8.

    Chapter  Google Scholar 

  9. Lewis, A., and J.L. Bernat, eds. 2022. Death Determination by Neurologic Criteria: Areas of Consensus and Controversy. Springer. https://doi.org/10.1007/978-3-031-15947-3.

    Book  Google Scholar 

  10. A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. 1968. JAMA 205 (6): 337–340. https://doi.org/10.1001/jama.1968.03140320031009.

  11. Truog, R.D., E.T. Paquette, and R.C. Tasker. 2020. Understanding brain death. JAMA 323 (21): 2139–2140. https://doi.org/10.1001/jama.2020.3593.

    Article  Google Scholar 

  12. Chiong, W. 2005. Brain death without definitions. Hastings Center Report 35 (6): 20–30. https://doi.org/10.1353/hcr.2005.0105.

    Article  Google Scholar 

  13. Nair-Collins, M., J. Northrup, and J. Olcese. 2016. Hypothalamic-pituitary function in brain death: A review. Journal of Intensive Care Medicine 31 (1): 41–50. https://doi.org/10.1177/0885066614527410.

    Article  Google Scholar 

  14. Giacino, J.T., D.I. Katz, N.D. Schiff, et al. 2018. Practice guideline update recommendations summary: Disorders of consciousness. Neurology 91 (10): 450–460. https://doi.org/10.1212/wnl.0000000000005926.

    Article  Google Scholar 

  15. Yang, Q., and G. Miller. 2015. East-west differences in perception of brain death. Journal of Bioethical Inquiry 12 (2): 211–225. https://doi.org/10.1007/s11673-014-9564-x.

    Article  Google Scholar 

  16. Roels, L., C. Spaight, J. Smits, and B. Cohen. 2010. Critical Care staffs’ attitudes, confidence levels and educational needs correlate with countries’ donation rates: Data from the Donor Action database. Transpl Int Off J Eur Soc Organ Transplant 23 (8): 842–850. https://doi.org/10.1111/j.1432-2277.2010.01065.x.

    Article  Google Scholar 

  17. Terunuma, Y., and B.J. Mathis. 2021. Cultural sensitivity in brain death determination: A necessity in end-of-life decisions in Japan. BMC Medical Ethics 22 (1): 58. https://doi.org/10.1186/s12910-021-00626-2.

    Article  Google Scholar 

  18. Russell, J.A., L.G. Epstein, D.M. Greer, M. Kirschen, M.A. Rubin, and A. Lewis. 2019. Brain death, the determination of brain death, and member guidance for brain death accommodation requests: AAN position statement. Neurology 92 (5): 228–232. https://doi.org/10.1212/wnl.0000000000006750.

    Article  Google Scholar 

  19. Lee, S.K. 2009. East Asian attitudes toward death – a search for the ways to help east Asian elderly dying in contemporary America. Perm J. 13 (3): 55–60.

    Article  Google Scholar 

  20. Baloyi L, Makobe-Rabothata M. 2014. The African Conception of Death: A Cultural Implication. Papers from the International Association for Cross-Cultural Psychology Conferences.

  21. Asuquo, O. 2011. A rationalization of an African concept of life, death and the hereafter. American Journal of Social and Management Science 2 (1): 171–175. https://doi.org/10.5251/ajsms.2011.2.1.171.175.

    Article  Google Scholar 

  22. High, Dallas M. 1972. Death: Its conceptual elusiveness. Sound Interdiscip J 55 (4): 438–458.

    Google Scholar 

  23. Sarbey, B. 2016. Definitions of death: Brain death and what matters in a person. Journal of Law and the Biosciences 3 (3): 743–752. https://doi.org/10.1093/jlb/lsw054.

    Article  Google Scholar 

  24. Wittgenstein L. 1953. Philosophical Investigations. Anscombe GEM, ed. Wiley-Blackwell.

  25. Plunkett D, & T Sundell. 2013. Disagreement and the Semantics of Normative and Evaluative Terms. Philos Impr 13 (23). http://hdl.handle.net/2027/spo.3521354.0013.023. Accessed May 12 2022.

  26. Haslanger, Sally. 2020. Going On, Not in the Same Way. In Conceptual Engineering and Conceptual Ethics, ed. Alexis Burgess, Herman Cappelen, and David Plunkett, 230–260. Oxford University PressOxford. https://doi.org/10.1093/oso/9780198801856.003.0012.

    Chapter  Google Scholar 

  27. Gert, B., C.M. Culver, and K.D. Clouser. 2006. Bioethics: A systematic approach, 2nd ed. Oxford University Press.

    Book  Google Scholar 

  28. Magnus, D. 2018. A defense of the dead donor rule. Hastings Center Report 48 (S4): S36–S38. https://doi.org/10.1002/hast.951.

    Article  Google Scholar 

  29. Joffe, A. 2018. DCDD donors are not dead. Hastings Center Report 48 (Suppl 4): S29–S32. https://doi.org/10.1002/hast.949.

    Article  Google Scholar 

  30. Thomasson, Amie L. 2020. A Pragmatic Method for Normative Conceptual Work. In Conceptual Engineering and Conceptual Ethics, ed. Alexis Burgess, Herman Cappelen, and David Plunkett, 435–458. Oxford University PressOxford. https://doi.org/10.1093/oso/9780198801856.003.0021.

    Chapter  Google Scholar 

  31. Truog, R.D., and F.G. Miller. 2014. Changing the Conversation About Brain Death. American Journal of Bioethics 14 (8): 9–14. https://doi.org/10.1080/15265161.2014.925154.

    Article  Google Scholar 

  32. Wardrope, A. 2015. Medicalization and epistemic injustice. Medicine, Health Care and Philosophy 18 (3): 341–352. https://doi.org/10.1007/s11019-014-9608-3.

    Article  Google Scholar 

  33. Schweikart, S.J. 2020. Reexamining the flawed legal basis of the “dead donor rule” as a foundation for organ donation policy. AMA Journal of Ethics 22 (12): 1019–1024. https://doi.org/10.1001/amajethics.2020.1019.

    Article  Google Scholar 

  34. Goodwin, M. 2018. Revisiting death: Implicit bias and the case of Jahi McMath. Hastings Center Report 48 (S4): S77–S80. https://doi.org/10.1002/hast.963.

    Article  Google Scholar 

  35. Carel, H., and I.J. Kidd. 2014. Epistemic injustice in healthcare: A philosophical analysis. Medicine, Health Care and Philosophy 17 (4): 529–540. https://doi.org/10.1007/s11019-014-9560-2.

    Article  Google Scholar 

  36. Ruíz, E. 2020. Cultural gaslighting. Hypatia 35 (4): 687–713. https://doi.org/10.1017/hyp.2020.33.

    Article  Google Scholar 

  37. Berenstain, N. 2020. White feminist gaslighting. Hypatia 35 (4): 733–758. https://doi.org/10.1017/hyp.2020.31.

    Article  Google Scholar 

  38. Veatch, R.M. 2011. The not-so-tell-tale heart. Hastings Center Report 41 (2): 4–5. https://doi.org/10.1353/hcr.2011.0030.

    Article  Google Scholar 

  39. ACP. 2021. Ethics, Determination of Death, and Organ Transplantation in Normothermic Regional Perfusion (NRP) with Controlled Donation after Circulatory Determination of Death (cDCD): American College of Physicians Statement of Concern

  40. James, L., B. Parent, N. Moazami, and D.E. Smith. 2022. COUNTERPOINT: Does normothermic regional perfusion violate the ethical principles underlying organ procurement? No. CHEST 162 (2): 290–292. https://doi.org/10.1016/j.chest.2022.03.011.

    Article  Google Scholar 

  41. Weaver M. 2022. Archie Battersbee: judge rules 12-year-old is ‘brain-stem dead.’ The Guardian. https://www.theguardian.com/uk-news/2022/jun/13/archie-battersbee-judge-rules-12-year-old-is-brain-stem-dead. Accessed January 28 2024.

  42. Ortiz E. 2022. Her daughter was declared dead. Despite hospital objections, she believes she was alive. NBC News. https://www.nbcnews.com/news/us-news/daughter-was-declared-dead-hospital-objections-believes-alive-rcna42612. Accessed January 28 2024.

  43. Neumann A. 2023. When does life end? A father didn’t believe his daughter was dead. He says the hospital still harvested her organs. The Guardian. https://www.theguardian.com/us-news/2023/nov/28/hospital-organ-donation-death-lawsuit-fresno-california. Accessed 28 January 2024.

  44. Ross, L.F. 2018. Respecting choice in definitions of death. Hastings Center Report 48 (S4): S53–S55. https://doi.org/10.1002/hast.956.

    Article  Google Scholar 

  45. Lazaridis, C., and L.F. Ross. 2022. The Argument for Personal Choice in Determining Death. In Death determination by neurologic criteria: areas of consensus and controversy. Advances in neuroethics, ed. A. Lewis and J.L. Bernat, 433–443. Springer.

    Chapter  Google Scholar 

  46. Pope, T.M., J. Bennett, S.S. Carson, et al. 2020. Making medical treatment decisions for unrepresented patients in the ICU an official. American thoracic society/American geriatrics society policy statement. American Journal of Respiratory and Critical Care Medicine 201 (10): 1182–1192. https://doi.org/10.1164/rccm.202003-0512ST.

    Article  Google Scholar 

  47. Truog, R.D., and F.G. Miller. 2008. The dead donor rule and organ transplantation. New England Journal of Medicine 359 (7): 674–675. https://doi.org/10.1056/nejmp0804474.

    Article  Google Scholar 

  48. Sade, R.M. 1975. Brain death, cardiac death, and the dead donor rule. Journal of the South Carolina Medical Association 107 (4): 146–149.

    Google Scholar 

  49. Marquis, D. 2010. Are DCD donors dead? Hastings Center Report 40 (3): 24–31. https://doi.org/10.1353/hcr.0.0270.

    Article  Google Scholar 

  50. Rodríguez-Arias, D. 2018. The dead donor rule as policy indoctrination. Hastings Center Report 48 (S4): S39–S42. https://doi.org/10.1002/hast.952.

    Article  Google Scholar 

  51. Parent, B., A. Caplan, N. Moazami, and R.A. Montgomery. 2022. Response to American College of Physician’s statement on the ethics of transplant after normothermic regional perfusion. American Journal of Transplantation 22 (5): 1307–1310. https://doi.org/10.1111/ajt.16947.

    Article  Google Scholar 

  52. Podosky, P.M.C. 2022. Can conceptual engineering actually promote social justice? Synthese 200 (2): 160. https://doi.org/10.1007/s11229-022-03469-5.

    Article  Google Scholar 

  53. Truog, R.D., and R.C. Tasker. 2017. COUNTERPOINT: Should informed consent be required for apnea testing in patients with suspected brain death? Yes. Chest 152 (4): 702–704. https://doi.org/10.1016/j.chest.2017.05.032.

    Article  Google Scholar 

  54. Donation Statistics | NC DOA. 2024. https://ncadmin.nc.gov/about-doa/divisions/license-give-trust-fund-commission/donation/statistics. Accessed May 12 2022.

  55. LifeNet Health. 2021. LifeNet Health facilitated record number of organ donors in Virginia in 2021. https://www.lifenethealth.org/news/lifenet-health-facilitated-record-number-organ-donors-virginia-2021. Accessed 12 May 2022.

  56. Ursillo J. 2022. Organ donation reaches record high in NJ in 2021. New Jersey 101.5. https://nj1015.com/organ-donation-reaches-record-high-in-nj-in-2021/. Accessed 12 May 2022.

  57. Nair-Collins, M., S.R. Green, and A.R. Sutin. 2015. Abandoning the dead donor rule? A national survey of public views on death and organ donation. Journal of Medical Ethics 41 (4): 297–302. https://doi.org/10.1136/medethics-2014-102229.

    Article  Google Scholar 

  58. DuBois, J.M., and E.E. Anderson. 2006. Attitudes toward death criteria and organ donation among healthcare personnel and the general public. Progress in Transplantation 16 (1): 65–73.

    Article  Google Scholar 

  59. Al-Shammri, S., R.F. Nelson, R. Madavan, T.A. Subramaniam, and T.R. Swaminathan. 2003. Survival of cardiac function after brain death in patients in Kuwait. European Neurology 49 (2): 90–93. https://doi.org/10.1159/000068506.

    Article  Google Scholar 

  60. Szabó, G. 2004. Physiologic changes after brain death. The Journal of Heart and Lung Transplantation 23 (9): S223–S226. https://doi.org/10.1016/j.healun.2004.04.005.

    Article  Google Scholar 

  61. Kawasaki, A., M. Hotta, K. Mochiduki, et al. 2014. What do brain-dead patients ultimately die of? Critical Care 18 (1): P465. https://doi.org/10.1186/cc13655.

    Article  Google Scholar 

  62. Aboubakr M, MIK Yousaf, LJ Weisbrod, G. Alameda. 2024. Brain Death Criteria. In: StatPearls. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK545144/. Accessed 28 January 2024.

  63. Potts, M., and D.W. Evans. 2005. Does it matter that organ donors are not dead? Ethical and policy implications. Journal of Medical Ethics 31 (7): 406–409. https://doi.org/10.1136/jme.2004.010298.

    Article  Google Scholar 

  64. Truog, R.D., and W.M. Robinson. 2003. Role of brain death and the dead-donor rule in the ethics of organ transplantation. Critical Care Medicine 31 (9): 2391–2396. https://doi.org/10.1097/01.ccm.0000090869.19410.3c.

    Article  Google Scholar 

  65. Greer, D.M., H.H. Wang, J.D. Robinson, P.N. Varelas, G.V. Henderson, and E.F.M. Wijdicks. 2016. Variability of brain death policies in the United States. JAMA Neurology 73 (2): 213–218. https://doi.org/10.1001/jamaneurol.2015.3943.

    Article  Google Scholar 

  66. Barnes, E., and D. Greer. 2020. Inconsistency in brain death determination should not be tolerated. AMA Journal of Ethics 22 (12): 1027–1032. https://doi.org/10.1001/amajethics.2020.1027.

    Article  Google Scholar 

  67. Nair-Collins, M., and F.G. Miller. 2022. Current practice diagnosing brain death is not consistent with legal statutes requiring the absence of all brain function. Journal of Intensive Care Medicine 37 (2): 153–156. https://doi.org/10.1177/0885066620939037.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Warren Alpert Medical School of Brown University, Providence, RI, USA

    William Choi

Authors
  1. William Choi
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to William Choi.

Ethics declarations

Conflict of interest

The author did not receive support from any organization for the submitted work. The author has no relevant financial or non-financial interests to disclose.

Additional information

Publisher's Note

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

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

Choi, W. The conceptual injustice of the brain death standard. Theor Med Bioeth (2024). https://doi.org/10.1007/s11017-024-09663-5

Download citation

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s11017-024-09663-5

Keywords

Search

Navigation