Negotiating End-of-Life Decisions

Entangled Repertoires on the Intermittent Paths of Acute and Palliative Care

Authors

DOI:

https://doi.org/10.18357/anthropologica67220252693

Keywords:

Acute care, palliative care, end-of-life decision-making, ventilator, care pathways, ethics of care, Canada

Abstract

When someone is very ill in Canada, the individual is taken under charge of the medical system and put on one of two distinct paths for handling the situation: either acute or palliative care. In the acute path, all available medical technology is deployed to save lives and avoid death, while the main objective of the palliative path is comfort, as death becomes inevitable and expected. The two paths are ordinarily seen as part of a linear process, wherein acute care is initially deployed and palliative care only after acute care is determined ineffective. In practice, however, the two paths are intermittent, as the reasoning repertoires that guide care practices along both paths are constantly renegotiated by care teams. This article follows the decision-making process regarding the use of the ventilator for two individuals at the end of their lives as their care teams alternate between legal, curing, and care repertoires. The entanglement of these repertoires leads to unexpected care practices as patients are shifted from one path to another. In both cases, the transition from acute to palliative care was nonlinear, and the purposes of the possible medical actions that could be taken along the two paths kept changing as events unfolded.

Downloads

Download data is not yet available.

Publication Facts

Metric
This article
Other articles
Peer reviewers 
0
2.4

Reviewer profiles  N/A

Author statements

Author statements
This article
Other articles
Data availability 
N/A
16%
External funding 
No
32%
Competing interests 
N/A
11%
Metric
This journal
Other journals
Articles accepted 
7%
33%
Days to publication 
543
145

Indexed in

Editor & editorial board
profiles
Academic society 
Canadian Anthropology Society
Publisher 
University of Victoria

References

Bruce, Courtenay R., Susan M. Miller, and Janice L. Zimmerman. 2015. “A Qualitative Study Exploring Moral Distress in the ICU Team: The Importance of Unit Functionality and Intrateam Dynamics.” Critical Care Medicine 43 (4):823–831. https://doi.org/10.1097/CCM.0000000000000822 DOI: https://doi.org/10.1097/CCM.0000000000000822

Chartrand, Louise. 2018. “Individualism and the Decision to Withdraw Life Support.” Societies 8 (4). https://doi.org/10.3390/soc8040117 DOI: https://doi.org/10.3390/soc8040117

——. 2020. “Dying on television versus dying in intensive care units following withdrawal of life support: how normative frames may traumatise the bereaved.” Sociology of Health and Illness 42 (5):1155-1170. https://doi.org/10.1111/1467-9566.13089. DOI: https://doi.org/10.1111/1467-9566.13089

——. 2022. “Theoretically Informed Hospital Ethnography: Reflecting on Method.” International Journal of Qualitative Methods 21:160940692211429. https://journals.sagepub.com/doi/10.1177/16094069221142997.

Chou, Eileen Y. 2015. “What’s in a name? The toll e-signatures take on individual honesty.” Journal of Experimental Social Psychology 61: 84–95. https://doi.org/10.1016/j.jesp.2015.07.010 DOI: https://doi.org/10.1016/j.jesp.2015.07.010

Downie, Jocelyn. 2016. Dying Justice: A Case for Decriminalizing Euthanasia and Assisted Suicide in Canada. Toronto: University of Toronto Press.

Epstein, Scott K., and Jonathon Dean Truwit. 2011. A Practical Guide to Mechanical Ventilation. Chichester, West Sussex, UK: Wiley-Blackwell.

Houston, Susan, Mark A. Casanova, Marygrace Leveille, Kathryn L. Schmidt, Sunni A. Barnes, Kelli R. Trungale, and Robert L. Fine. 2013. “The Intensity and Frequency of Moral Distress Among Different Healthcare Disciplines.” The Journal of Clinical Ethics 24 (2): 98–112. https://www.journals.uchicago.edu/doi/10.1086/JCE201324203. DOI: https://doi.org/10.1086/JCE201324203

Hutchinson, Tom A., Nora Hutchinson, and Antonia Arnaert. 2009. “Whole Person Care: Encompassing the Two Faces of Medicine.” Canadian Medical Association Journal (CMAJ) 180 (8):845–846. https://doi.org/10.1503/cmaj.081081. DOI: https://doi.org/10.1503/cmaj.081081

Jordan, Joanne, Jayne Price, and Lindsay Prior. 2015. “Disorder and Disconnection: Parent Experiences of Liminality when Caring for their Dying Child.” Sociology of Health and Illness 37 (6): 839–855. https://doi.org/10.1111/1467-9566.12235. DOI: https://doi.org/10.1111/1467-9566.12235

Kaufman, Sharon R. 2005. …And a time to die: How American Hospitals Shape the End of Life. New York, London, Toronto, Sydney: Lisa Drew Book/Scribner. DOI: https://doi.org/10.1097/01.COT.0000290066.06231.57

——. 2015. Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line, Critical Global Health. Durham: Duke University Press.

Kaufman, Sharon R., and Lynn M. Morgan. 2005. “The Anthropology of the Beginnings and Ends of Life.” Annual Review of Anthropology 34 (1):317–341. https://doi.org/10.1146/annurev.anthro.34.081804.120452. DOI: https://doi.org/10.1146/annurev.anthro.34.081804.120452

Kearney, Balfour. 2004. “Healing and Palliative Care: Charting our way Forward.” Palliative Medicine. 17 (8):657–658. https://doi.org/10.1191/0269216303pm848ed DOI: https://doi.org/10.1191/0269216303pm848ed

Latour, Bruno. 2005. Reassembling the Social. An Introduction to Actor-Network-Theory, Clarendon Lectures in Management Studies. Oxford: Oxford University Press. DOI: https://doi.org/10.1093/oso/9780199256044.001.0001

Levoy, Kristin, Elise C. Tarbi, and Joseph P. De Santis. 2020. “End-of-life decision making in the context of chronic life-limiting disease: a concept analysis and conceptual model.” Nursing Outlook 68 (6):784–807. https://doi.org/10.1016/j.outlook.2020.07.008. DOI: https://doi.org/10.1016/j.outlook.2020.07.008

Marcoux, Isabelle, Brian Michara, and Claire. Durand. 2007. “Confusion Between Euthanasia and Other End-of-Life Decisions: Influences on Public Opinion Poll Results.” Canadian Journal of Public Health 98 (3). https://doi.org/10.1007/BF03403719 DOI: https://doi.org/10.1007/BF03403719

Mesman, Jessica. 2008. Uncertainty in Medical Innovation: Experienced Pioneers in Neonatal Care. London: Palgrave Macmillan.

Mol, A. 2008. The Logic of Care: Health and the Problem of Patient Choice (1st ed.). Routledge. https://doi.org/10.4324/9780203927076 DOI: https://doi.org/10.4324/9780203927076

Néron, J. 1992. [Rev. of The Genesis of the Canadian Criminal Code of 1892, de Desmond H. Brown (Book Review)]. Cahiers de droit (Québec), 33(2), 652. DOI: https://doi.org/10.7202/043157ar

Orr, S., N. Efstathiou, M. Baernholdt, and B. Vanderspank-Wright. 2022. “ICU Clinicians’ Experiences of Terminal Weaning and Extubation (S505).” Journal of Pain and Symptom Management 63 (5):907–908. https://dx.doi.org/10.1016/j.jpainsymman.2022.02.128. DOI: https://doi.org/10.1016/j.jpainsymman.2022.02.128

Palma, A., V. Aliaga-Castillo, L. Bascunan, V. Rojas, F. Ihl, and J. N. Medel. 2022. “An Intensive Care Unit Team Reflects on End-of-Life Experiences With Patients and Families in Chile.” American Journal of Critical Care: An Official Publication, American Association of Critical-Care Nurses 31 (1): 24–32. https://dx.doi.org/10.4037/ajcc2022585. DOI: https://doi.org/10.4037/ajcc2022585

Prendergast, Thomas J., and Kathleen A. Puntillo. 2002. “Withdrawal of Life Support: Intensive Caring at the End of Life.” JAMA: the Journal of the American Medical Association 288 (21): 2732–2740. https://doi.org/10.1001/jama.288.21.2732. DOI: https://doi.org/10.1001/jama.288.21.2732

Ritchie, Kim, Andrea M. D’Alessandro-Lowe, Andrea Brown, Heather Millman, Mina Pichtikova, Yuanxin Xue, Maxwell Altman, Isaac Beech, Mauda Karram, Fardous Hosseiny, Sara Rodrigues, Charlene O’Connor, Hugo Schielke, Ann Malain, Randi E. McCabe, Alexandra Heber, Ruth A. Lanius, and Margaret C. McKinnon. 2023. “The Hidden Crisis: Understanding Potentially Morally Injurious Events Experienced by Healthcare Providers during COVID-19 in Canada.” Internatonal Journal of Environemtnal Research and Public Health 20 (6): 4813. https://doi.org/10.3390/ijerph20064813. DOI: https://doi.org/10.3390/ijerph20064813

Rosa, William E., Harvey M. Chochinov, Nessa Coyle, Rachel A. Hadler, and William S. Breitbart. 2022. “Attending to the Existential Experience in Oncology: Dignity and Meaning Amid Awareness of Death.” JCO Global Oncology 8 (8): e2200038-e2200038. https://doi.org/10.1200/GO.22.00038. DOI: https://doi.org/10.1200/GO.22.00038

Sibbald, Robert, Paula Chidwick, and Laura Hawryluck. 2014. “Standard of care and resource implications of the Cuthbertson v. Rasouli ruling.” Canadian Medical Association Journal (CMAJ) 186 (5):327–328. https://doi.org/10.1503/cmaj.131640. DOI: https://doi.org/10.1503/cmaj.131640

Silveira, M. J. 2016. The Case of Mistaken Intubation. PSNet, June 1. (accessed 6 June 2024).

Trotochaud, Karen, Joyce Ramsey Coleman, Nicolas Krawiecki, and Courtney McCracken. 2015. “Moral Distress in Pediatric Healthcare Providers.” Journal of Pediatric Nursing 30 (6): 908–914. https://doi.org/10.1016/j.pedn.2015.03.001. DOI: https://doi.org/10.1016/j.pedn.2015.03.001

Downloads

Published

2025-12-17

How to Cite

Chartrand, L. (2025). Negotiating End-of-Life Decisions : Entangled Repertoires on the Intermittent Paths of Acute and Palliative Care. Anthropologica, 67(2). https://doi.org/10.18357/anthropologica67220252693

Issue

Section

Thematic Section: An Anthropological Lens on End-of-life Transitions and Liminality