Abstract
Study design
Qualitative.
Objectives
The objective of this study was to examine whether individuals with a SCI would have considered Medical-Assistance-in-Dying (MAiD) following their SCI and whether these individuals felt they would have been able to make an informed decision about this potentially permanent option early in their experience.
Setting
Manitoba, Canada.
Methods
Participants with varying neurological levels of SCI and classification were included. The time since SCI ranged from <6 months to >50 years. A focus group of five individuals was conducted first to calibrate questions. Twenty-three participants were then individually interviewed. Participants’ responses were transcribed and coded into themes.
Results
Half of the participants reported having suicidal ideation within the first 2 years of experiencing a SCI. However, no participants thought that they would have been able to make an informed decision about MAiD during this time. Most participants reported that they were able to adapt and reframe their lives to alter their views. There was higher agreement that MAiD should be available for individuals who had experienced a reframed, informed view.
Conclusion
This study indicates that people with SCI do not feel that informed decision making about ending their life can be made early after SCI despite high levels of reported suicidal ideation in that early time frame. A reframing process helps to facilitate informed decisions about living with a SCI. The reframing process is correlated with opportunities of rehabilitation, peer mentor support, and re-integration into the community.
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References
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Acknowledgements
Research assistants: Stella Entcheva, Jamie Hudon, Alyssia Wilson, Mayur Nankar. Special thanks to the Spinal Cord Injury Manitoba Inc. and Darlene Cooper and Gail Burnside. Special thanks to Dr. Jitender Sareen, department of Psychiatry University of Manitoba, who contributed to advice about a safety protocol and general feedback for the research design. Also, many thanks to our study participants who shared their personal journeys.
Funding
This work was supported by the Rick Hansen Institute for Spinal Cord Injury Research [Grant #2012–31] and the Health Sciences Centre Manitoba 2018 Staff Fellowship Award. These funding supports had no direct involvement in the research.
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NT is the primary author who conceived the initial study question. She performed the conceptual design, preliminary literature review, and interviews of all participants. She analyzed the data to create themes and subthemes for preparation of further independent review by research assistants. She participated in writing the paper with novel data at all layers of revision. KE is a secondary author who participated in conceptual design and overviewing the interview process, as well as obtaining grant funding. She participated in overviewing data analysis and directly contributed to all stages of writing the final paper. SDS is a secondary author who participated in conceptual design, and particularly assisted with data analysis, summation, and participated at all stages of writing the final paper.
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41393_2021_619_MOESM1_ESM.pdf
Supplementary File Appendix 1: Final Question Sets for Individual Interviews, Appendix 2: SCI Qualitative Research Operational Definitions of Themes and Subthemes
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Tchajkova, N., Ethans, K. & Smith, S.D. Inside the lived perspective of life after spinal cord injury: a qualitative study of the desire to live and not live, including with assisted dying. Spinal Cord 59, 485–492 (2021). https://doi.org/10.1038/s41393-021-00619-3
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DOI: https://doi.org/10.1038/s41393-021-00619-3
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