Navigating End-of-Life Choices: Perspectives of Individuals Living with Multiple Sclerosis on Medical Assistance in Dying in Various Hypothetical Situations

Authors

  • Janine Brown, PhD
  • Katherine B. Knox
  • Lilian Thorpe
  • Loralee Herter
  • Mir Nabila Ashraf
  • Michael C. Levin
  • Ilia Poliakov

Abstract

Background

Saskatchewan’s multiple sclerosis (MS) prevalence rate is among the highest in the world. Although quantitative research has demonstrated a high hypothetical interest in assisted dying among individuals living with MS (ILMS), the underlying reasons potentially influencing their consideration of medical assistance in dying (MAiD) have not been explored qualitatively.

Methods

An Interpretive Description methodology was used for this project. The dataset included 27 interviews (22 ILMS, five key informants), demographic data, interviewer field notes, and reflective content. Participants discussed their perspectives on MAiD across a range of hypothetical situations. Inductive reflexive thematic analysis and content analysis were completed.

Results

When presented with hypothetical disease trajectory scenarios, participants indicated they would or may consider MAiD if experiencing unbearable pain (n=21), the need for continuous care (n=16), or perceptions of being a burden to others (n=14). Fewer participants reported that loss of pleasurable activities (n=6) or changes in living arrangements alone (n=8) would or may prompt consideration of MAiD. Four interconnected themes characterized participants’ reasoning: 1) a shifting identity, 2) navigating resource disparities, 3) the weight of guilt, and 4) care concerns for family.

Discussion

ILMS may consider MAiD for various reasons. Decision-making at the end-of-life exists within a complex matrix of individual guilt and concern for family members while reappraising quality of life and accessing support through disease progression. 

Author Biographies

Janine Brown, PhD

Janine Brown is a Registered Nurse and Associate Professor at the University of Regina with a PhD in Health Sciences from the University of Saskatchewan. Her research focuses on medical assistance in dying (MAiD), ethically complex care, and end-of-life decision-making. Her work is published in journals such as Qualitative Health Research, Journal of Loss and Trauma, Journal of Palliative Medicine, BMC Medical Ethics, and Healthcare Policy, contributing to national and international conversations on MAiD policy, practitioner participation, and patient- and family-centred care.

Katherine B. Knox

Katherine B. Knox is the provincial department head and an Associate Professor at the University of Saskatchewan, Department of Physical Medicine and Rehabilitation. She is a primary investigator with the Cameco MS Neurosciences Research Center at the University of Saskatchewan, and her clinical research focuses on long-term outcomes and quality of life for people with multiple sclerosis.

Lilian Thorpe

Lilian Thorpe is a geriatric psychiatrist providing consultation liaison services in the Saskatoon area. She has been extensively involved with medical assistance in dying since 2016, has assessed over 1,400 patients since then, and is a Professor in the College of Medicine at the University of Saskatchewan.

Loralee Herter

Loralee Herter is a proud mom to three children, a grandma to four, and lives with her husband, Arlen, on their family farm in southwest Saskatchewan. Loralee has been living with MS since 2005.

Mir Nabila Ashraf

Mir Nabila Ashraf completed her Master's in Aging Studies at the University of Regina, with a research focus on digital health, chronic disease self-management, and end-of-life care among older adults. Her community-engaged work emphasizes equitable, patient-centred approaches to improving access to health information and quality of life.

Michael C. Levin

Michael C. Levin is the Saskatchewan Multiple Sclerosis Clinical Research Chair and Professor of Neurology and Anatomy, Physiology and Pharmacology. Actively caring for persons living with multiple Sclerosis, Dr. Levin’s research interests include developing novel small molecules to treat progressive forms of MS, for which there are marginal treatments.

Ilia Poliakov

Ilia Poliakov completed medical school at the University of Calgary (2010) and a neurology residency at the University of Saskatchewan (2015). He later completed a fellowship in Multiple Sclerosis and Neuroimmunology and is now the Director of the Saskatoon Multiple Sclerosis Clinic while contributing to medical education and multiple sclerosis research.

References

Gilmour H, Ramage-Morin PL, Wong SL. Multiple sclerosis: prevalence and impact. Health rep. 2018;29(1):3-8.

Khan G, Hashim MJ. Epidemiology of multiple sclerosis: global, regional, National and sub-national-level estimates and future projections. J Epidemiol Glob Health. 2025;15(1):21. Published 2025 Feb 10. doi:10.1007/s44197-025-00353-6

Al-Sakran LH, Marrie RA, Blackburn DF, Knox KB, Evans CD. Establishing the incidence and prevalence of multiple sclerosis in Saskatchewan. Can J Neurol Sci. 2018;45(3):295-303. doi:10.1017/cjn.2017.301

Lakin L, Davis BE, Binns CC, Currie KM, Rensel MR. Comprehensive approach to management of multiple sclerosis: addressing invisible symptoms—a narrative review. Neurol Ther. 2021;10(1):75-98. doi:10.1007/s40120-021-00239-2

Chiaravalloti ND, DeLuca J. Cognitive impairment in multiple sclerosis. Lancet Neurol. 2008;7(12):1139-1151. doi:10.1016/S1474-4422(08)70259-X

Kalia LV, O'Connor PW. Severity of chronic pain and its relationship to quality of life in multiple sclerosis. Mult Scler. 2005;11(3):322-327. doi:10.1191/1352458505ms1168oa

Whitehouse CE, Fisk JD, Bernstein CN, Berrigan LI, Bolton JM, Graff LA, et al. Comorbid anxiety, depression, and cognition in MS and other immune-mediated disorders. Neurology. 2019;92(5):e406-e417. Published 2019 Jan 28. doi:10.1212/WNL.0000000000006854

Koffman J, Penfold C, Cottrell L, Farsides B, Evans CJ, Burman R, et al. “I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study. Plos One. 2022;17(5):e0265861. Published 2022 May 26. doi:10.1371/journal.pone.0265861

Marrie RA, Yu N, Blanchard J, Leung S, Elliott L. The rising prevalence and changing age distribution of multiple sclerosis in Manitoba. Neurology. 2010;74(6):465-471. doi:10.1212/WNL.0b013e3181cf6ec0

Talente B, Finseth LT, Blake N, Costello K, Schmidt H, Vandigo J, et al. Patient experiences with the impacts of multiple sclerosis & disease-modifying therapies. ClinicoEcon Outcomes Res. 2025;17:199-215. Published 2025 Mar 15. doi:10.2147/CEOR.S489929

Connolly T, Coats H, DeSanto K, Jones J. The experience of uncertainty for patients, families and healthcare providers in post-stroke palliative and end-of-life care: a qualitative meta-synthesis. Age Ageing. 2021;50(2):534-545. doi:10.1093/ageing/afaa229

Buote LC, Wada K, Russell-Mayhew S, Feldstain A. Maid in Canada: controversies, guidelines, and the role of psychologists in relation to Bill C-14. Canadian Psychology/Psychologie canadienne. 2022 Feb;63(1):126-137. doi:10.1037/cap0000286

Health Canada. Sixth Annual Report on Medical Assistance in Dying in Canada. Ottawa: Health Canada; 2025 Nov. [updated 28 November 2025, cited 20 January 2026]. Available from: https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2024.html

Grant I, Benedet J, Sheehy E, Frazee C. A conversation on feminism, ableism, and medical assistance in dying. Canadian Journal of Women and the Law. 2024;35(1):31-72. Published 2024 Jun 1. doi:10.3138/CJWL_2023_Grant3, 10.3138/CJWL_2023_Grant3

Coelho R, Maher J, Gaind KS, Lemmens T. The realities of medical assistance in dying in Canada. Palliat Support Care. 2023;21(5):871-878. doi:10.1017/S1478951523001025

Berkman CS, Cavallo PF, Chesnut WC, Holland NJ. Attitudes toward physician-assisted suicide among persons with multiple sclerosis. J Palliat Med. 1999;2(1):51–63. doi:10.1089/jpm.1999.2.51

Marrie RA, Salter A, Tyry T, Cutter GR, Cofield S, Fox RJ. High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. 2017;88(16):1528-1534. doi:10.1212/WNL.0000000000003831

Teodoro IP, Rebouças VD, Thorne SE, de Souza NK, de Brito LS, Alencar AM. Interpretive description: a viable methodological approach for nursing research. Escola Anna Nery. 2018;22(03):e20170287. https://doi.org/10.1590/2177-9465-EAN-2017-0287

Hobart J. The multiple sclerosis impact scale (MSIS-29). In: Jenkins C, Peers M, Bromberg MD, editors. Quality of life measurement in neurodegenerative and related conditions. Cambridge: Cambridge University Press; 2011 Feb 3. p. 24-40

Ann Marrie R, McFadyen C, Yaeger L, Salter A. A systematic review of the validity and reliability of the patient-determined disease steps scale. Int J MS Care. 2023;25(1):20-25. doi:10.7224/1537-2073.2021-102

Ganzini L, Goy ER, Dobscha SK. Why Oregon patients request assisted death: family members’ views. J Gen Intern Med. 2008;23(2):154-157. doi:10.1007/s11606-007-0476-x

Hendry M, Pasterfield D, Lewis R, Carter B, Hodgson D, Wilkinson C. Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying. Palliat Med. 2013;27(1):13-26. doi:10.1177/0269216312463623

Crumley ET, LeBlanc J, Henderson B, Jackson-Tarlton CS, Leck E. Canadian family members’ experiences with guilt, judgment and secrecy during medical assistance in dying: a qualitative descriptive study. CMAJ Open. 2023;11(4):E782-E789. Published 2023 Aug 22. doi:10.9778/cmajo.20220140

Serota KL. Complex MAiD Bereavement Stories: A Critical Narrative Analysis of Family Members’ Discordance, Pain, Dignity, and Wisdom. Doctoral dissertation. University of Toronto; 2024. [accessed January 20, 2026] https://utoronto.scholaris.ca/server/api/core/bitstreams/9e762429-dfee-4a31-8964-138bf8f81de8/content

Bowers SP, Chin M, O’Riordan M, Carduff E. The end of life experiences of people living with socio-economic deprivation in the developed world: an integrative review. BMC Palliat Care. 2022;21(1):193. Published 2022 Nov 5. doi:10.1186/s12904-022-01080-6

Aker N, Griffiths S, Kupeli N, Frost R, Nair P, Walters K, et al. Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review. BMC Palliat Care. 2024;23(1):228. Published 2024 Sep 17. doi:10.1186/s12904-024-01555-8

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Published

2026-05-20

Issue

Volume 2, Issue 1, Spring 2026

Section

Articles