Dr Janine Brown1, Mir Nabila Ashraf1, Dr. Katherine Knox2, Dr. Lilian Thorpe2, Mrs. Loralee Herter1, Dr. Michael Levin2, Dr. Ilia Poliakov2
1University Of Regina, Saskatoon, Canada, 2University of Saskatchewan, Saskatoon, Canada
Biography:
Dr. Janine Brown, Registered Nurse and Associate Professor at the University of Regina, is a scholar in end-of-life care and medical assistance in dying (MAID). Her research focuses on dignified patient-and family-centred end-of-life experiences and on addressing the social-political factors shaping Canadians’ end-of-life planning, informing health policy, education, and end-of-life care practices.
Abstract:
Background:
Medical assistance in dying (MAID) was legalized in Canada in 2016, expanding end-of-life (EOL) care options beyond traditional palliative approaches. Saskatchewan, Canada, has one of the highest rates of multiple sclerosis (MS) in the world and some individuals living with MS (ILMS) choose MAID. Little is known about how ILMS view this choice within the spectrum of EOL care.
Aims:
To better understand the perspectives of ILMS regarding end-of-life care when MAID is a legally available option, and under what conditions individuals living with MS may or may not consider MAID.
Methods:
An Interpretive Description methodology study was conducted using 27 interviews with ILMS and key informants, along with demographic information, field notes, and reflective content. Data were analysed using inductive, reflexive thematic analysis and content analysis. A patient partner and their spouse contributed to the study design, methods, data collection tools, and data analysis.
Results:
Most participants indicated they would consider MAID under circumstances of unbearable pain (82%), feeling like a burden (59%), or loss of enjoyment in life (50%). Many would or might consider MAID if requiring 24/7 care or experiencing incontinence (73%) or financial strain (55%). Conversely, most would not consider MAID due to loss of enjoyable activities (73%) or changes in living situation (64%). Thematically, individuals living with MS described combating stigma, leaning into hope, and striving to maintain self-agency.
Conclusions:
MAID is an end-of-life option some individuals with MS may consider amid complex decision-making processes. ILMS in this study are aware of and actively considering how to navigate the decision-making challenges associated with their disease progression. They demonstrate a strong sense of self-agency and consistently lean into hope and positivity throughout all stages of their illness. Supporting decision-making, family discussions, and access to EOL and disability resources is essential for care providers.