. 2023 Apr;70(4):637-650.

doi: 10.1007/s12630-023-02416-3. Epub 2023 May 2.

Death determination by neurologic criteria-what do families understand?

Aimee J Sarti^{1

2}, Stephanie Sutherland³, Maureen Meade⁴, Laura Hornby⁵, Lindsay C Wilson⁵, Angele Landriault⁶, Brandi Vanderspank-Wright^{7

8}, Sabira Valiani⁹, Sean Keenan^{10

11}, Matthew J Weiss¹², Kim Werestiuk¹³, Stephen Beed¹⁴, Andreas H Kramer¹⁵, Joann Kawchuk⁹, Pierre Cardinal³, Sonny Dhanani¹⁶, Ken Lotherington⁵, Giuseppe Pagliarello³, Michaël Chassé¹⁷, Mary Gatien¹⁸, Kim Parsons¹⁹, Jennifer A Chandler²⁰, Peter Nickerson²¹, Sam D Shemie^{5

22}; Canadian Critical Care Trials Group (CCCTG)

Affiliations

¹ Department of Critical Care, The Ottawa Hospital, General Campus, Ottawa, ON, K1H 8L6, Canada. asarti@toh.ca.
² Ottawa Hospital Research Institute, Ottawa, ON, Canada. asarti@toh.ca.
³ Department of Critical Care, The Ottawa Hospital, General Campus, Ottawa, ON, K1H 8L6, Canada.
⁴ Department of Critical Care, Hamilton Health Sciences, Hamilton, ON, Canada.
⁵ Canadian Blood Services, Ottawa, ON, Canada.
⁶ Practice, Performance and Innovation Unit, Royal College of Physicians and Surgeons of Canada, Ottawa, ON, Canada.
⁷ Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁸ School of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.
⁹ Department of Adult Critical Care, Saskatchewan Health Authority, Saskatoon, SK, Canada.
¹⁰ BC Transplant, Vancouver, BC, Canada.
¹¹ Division of Critical Care, Department of Medicine, The University of British Columbia, Vancouver, BC, Canada.
¹² Transplant Québec, Montreal, QC, Canada.
¹³ Transplant Manitoba, Winnipeg, MB, Canada.
¹⁴ Department of Critical Care, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada.
¹⁵ Departments of Critical Care Medicine and Clinical Neurosciences, University of Calgary and Southern Alberta Organ and Tissue Donation Program, Calgary, AB, Canada.
¹⁶ Division of Critical Care, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
¹⁷ Department of Medicine, Centre hospitalier de L'Université de Montréal, Montreal, QC, Canada.
¹⁸ Horizon Health Network, Miramichi, NB, Canada.
¹⁹ Organ Procurement and Exchange of Newfoundland and Labrador, St. John's, NL, Canada.
²⁰ Common Law Section, Faculty of Law, University of Ottawa, Ottawa, ON, Canada.
²¹ Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
²² Division of Critical Care, Department of Pediatrics, McGill University, Montreal, QC, Canada.

PMID: 37131029
PMCID: PMC10203015
DOI: 10.1007/s12630-023-02416-3

Death determination by neurologic criteria-what do families understand?

Aimee J Sarti et al. Can J Anaesth. 2023 Apr.

. 2023 Apr;70(4):637-650.

doi: 10.1007/s12630-023-02416-3. Epub 2023 May 2.

Authors

Affiliations

¹ Department of Critical Care, The Ottawa Hospital, General Campus, Ottawa, ON, K1H 8L6, Canada. asarti@toh.ca.
² Ottawa Hospital Research Institute, Ottawa, ON, Canada. asarti@toh.ca.
³ Department of Critical Care, The Ottawa Hospital, General Campus, Ottawa, ON, K1H 8L6, Canada.
⁴ Department of Critical Care, Hamilton Health Sciences, Hamilton, ON, Canada.
⁵ Canadian Blood Services, Ottawa, ON, Canada.
⁶ Practice, Performance and Innovation Unit, Royal College of Physicians and Surgeons of Canada, Ottawa, ON, Canada.
⁷ Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁸ School of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada.
⁹ Department of Adult Critical Care, Saskatchewan Health Authority, Saskatoon, SK, Canada.
¹⁰ BC Transplant, Vancouver, BC, Canada.
¹¹ Division of Critical Care, Department of Medicine, The University of British Columbia, Vancouver, BC, Canada.
¹² Transplant Québec, Montreal, QC, Canada.
¹³ Transplant Manitoba, Winnipeg, MB, Canada.
¹⁴ Department of Critical Care, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada.
¹⁵ Departments of Critical Care Medicine and Clinical Neurosciences, University of Calgary and Southern Alberta Organ and Tissue Donation Program, Calgary, AB, Canada.
¹⁶ Division of Critical Care, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
¹⁷ Department of Medicine, Centre hospitalier de L'Université de Montréal, Montreal, QC, Canada.
¹⁸ Horizon Health Network, Miramichi, NB, Canada.
¹⁹ Organ Procurement and Exchange of Newfoundland and Labrador, St. John's, NL, Canada.
²⁰ Common Law Section, Faculty of Law, University of Ottawa, Ottawa, ON, Canada.
²¹ Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
²² Division of Critical Care, Department of Pediatrics, McGill University, Montreal, QC, Canada.

PMID: 37131029
PMCID: PMC10203015
DOI: 10.1007/s12630-023-02416-3

Erratum in

Correction: Death determination by neurologic criteria-what do families understand?
Sarti AJ, Sutherland S, Meade M, Hornby L, Wilson LC, Landriault A, Vanderspank-Wright B, Valiani S, Keenan S, Weiss MJ, Werestiuk K, Beed S, Kramer AH, Kawchuk J, Cardinal P, Dhanani S, Lotherington K, Pagliarello G, Chassé M, Gatien M, Parsons K, Chandler JA, Nickerson P, Shemie SD; Canadian Critical Care Trials Group (CCCTG). Sarti AJ, et al. Can J Anaesth. 2023 Jul;70(7):1278-1279. doi: 10.1007/s12630-023-02491-6. Can J Anaesth. 2023. PMID: 37253861 Free PMC article. No abstract available.

Abstract
in English, French

Purpose: Currently, there is little empirical data on family understanding about brain death and death determination. The purpose of this study was to describe family members' (FMs') understanding of brain death and the process of determining death in the context of organ donation in Canadian intensive care units (ICUs).

Methods: We conducted a qualitative study using semistructured, in-depth interviews with FMs who were asked to make an organ donation decision on behalf of adult or pediatric patients with death determination by neurologic criteria (DNC) in Canadian ICUs.

Results: From interviews with 179 FMs, six main themes emerged: 1) state of mind, 2) communication, 3) DNC may be counterintuitive, 4) preparation for the DNC clinical assessment, 5) DNC clinical assessment, and 6) time of death. Recommendations on how clinicians can help FMs to understand and accept DNC through communication at key moments were described including preparing FMs for death determination, allowing FMs to be present, and explaining the legal time of death, combined with multimodal strategies. For many FMs, understanding of DNC unfolded over time, facilitated with repeated encounters and explanation, rather than during a single meeting.

Conclusion: Family members' understanding of brain death and death determination represented a journey that they reported in sequential meeting with health care providers, most notably physicians. Modifiable factors to improve communication and bereavement outcomes during DNC include attention to the state of mind of the family, pacing and repeating discussions according to families' expressed understanding, and preparing and inviting families to be present for the clinical determination including apnea testing. We have provided family-generated recommendations that are pragmatic and can be easily implemented.

RéSUMé: OBJECTIF: À l’heure actuelle, il y a peu de données empiriques sur la compréhension des familles de la mort cérébrale et de la détermination du décès. Le but de cette étude était de décrire la compréhension des membres de la famille de la mort cérébrale et du processus de détermination du décès dans le contexte du don d’organes dans les unités de soins intensifs (USI) canadiennes. MéTHODE: Nous avons mené une étude qualitative à l’aide d’entrevues semi-structurées et approfondies avec des membres de la famille à qui on a demandé de prendre une décision de don d’organes au nom de patients adultes ou pédiatriques dont le décès avait été déterminé selon des critères neurologiques (DCN) dans les unités de soins intensifs canadiennes. RéSULTATS: Sur la base d’entrevues avec 179 membres de la famille, six thèmes principaux ont émergé : 1) l’état d’esprit, 2) la communication, 3) le DCN peut être contre-intuitif, 4) la préparation à l’évaluation clinique pour un DCN, 5) l’évaluation clinique pour un DCN et 6) le moment du décès. Des recommandations sur la façon dont les cliniciens peuvent aider les membres de la famille à comprendre et à accepter un DCN par la communication à des moments clés ont été décrites, y compris la préparation des membres de la famille à la détermination du décès, l’autorisation de la présence des membres de la famille et l’explication de l’heure légale du décès, combinées à des stratégies multimodales. Pour de nombreux membres de la famille, la compréhension du DCN s’est développée au fil du temps et a été facilitée par des rencontres et des explications répétées plutôt qu’au cours d’une seule rencontre. CONCLUSION: La compréhension qu’ont les membres de la famille de la mort cérébrale et de la détermination du décès représente un parcours qu’ils ont décrit lors de rencontres successives avec des acteurs de soins de santé, et particulièrement avec des médecins. Les facteurs modifiables pour améliorer la communication et les issues du deuil pendant un DCN comprennent l’attention portée à l’état d’esprit de la famille, le rythme et la répétition des discussions en fonction de la compréhension exprimée par les familles, ainsi que la préparation et l’invitation des familles à être présentes pour la détermination clinique, y compris pendant le test d’apnée. Nous avons fourni des recommandations familiales qui sont pragmatiques et peuvent être facilement mises en œuvre.

Keywords: bereaved family members; brain death; brain death determination; death determination by neurologic criteria; qualitative.

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Cited by

Themes in the Management of Pediatric Brain Death Contestation: Exploratory Qualitative Work From Multidisciplinary Health Professionals in the United States.
Andrist E, Firn JI, Kirschen MP, Sederstrom NO, Kon AA, Fowler JC, Wolfe AHJ, McIlroy ME, Kiragu A, Morrison WE, Tegtmeyer K, Agarwal K, Pope TM, Vercler CJ, Winiarski D, McGowan N, Leber SM, Carroll CL, Flori HR; SCCM Contestation of Pediatric Brain Death Task Force. Andrist E, et al. Pediatr Crit Care Med. 2025 Jun 1;26(6):e846-e854. doi: 10.1097/PCC.0000000000003744. Epub 2025 Apr 23. Pediatr Crit Care Med. 2025. PMID: 40265985 Free PMC article.
Apnea Test: The Family in the Room.
Lazaridis C, Wolf M, Roth WH, Fan T, Mansour A, Goldenberg FD. Lazaridis C, et al. Neurocrit Care. 2024 Aug;41(1):1-5. doi: 10.1007/s12028-023-01906-y. Epub 2023 Dec 29. Neurocrit Care. 2024. PMID: 38158482 No abstract available.
Nova Scotia's Deemed Consent for Deceased Organ Donation: Family Member Perspectives and Experiences in the ICU Setting.
Sarti AJ, Sutherland S, Weiss MJ, Landry A, Hemming H, Dirk J, Lotherington K, Beed S. Sarti AJ, et al. Transplant Direct. 2024 Oct 10;10(11):e1713. doi: 10.1097/TXD.0000000000001713. eCollection 2024 Nov. Transplant Direct. 2024. PMID: 39399063 Free PMC article.
In reply: Brain death is more than technical.
Shemie SD; Guideline Development Group for the Canadian Death Definition and Determination Project. Shemie SD, et al. Can J Anaesth. 2023 Dec;70(12):2011-2012. doi: 10.1007/s12630-023-02571-7. Epub 2023 Oct 2. Can J Anaesth. 2023. PMID: 37784007 No abstract available.

References

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Death determination by neurologic criteria-what do families understand?

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Death determination by neurologic criteria-what do families understand?

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Abstract
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