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

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.