Abstract

Background: Individuals with spinal cord injuries (SCI) are invariably faced with decisions around management of their injury; from life prolonging to palliating interventions. End-of-life (EOL) decision-making has recently come to include conversations around Medical Assistance in Dying (MAID), as legislation changes have expanded access. The intersection between SCI and MAID, and other EOL decision-making has yet to be explored. We sought to discuss awareness and perspectives on MAID and EOL decision-making. Methods: We conducted hour-long semi-structured interviews with 15 individuals living with cervical SCI. Interviews took place over the telephone or virtually, and transcripts were analyzed using an iterative coding process and thematic analysis. Results: There was a global lack of awareness of options, that changed with time as participants assumed more independent roles in decision making. Participants possessed general awareness of MAID, but variable understanding of who legislation applies to. The way individuals with SCI could interact with MAID legislation brought forth interesting discussions around bodily autonomy and self-determination. Some voiced their own desire initially for MAID, while others vacillated or were more strongly opposed. Conclusions: This study emphasizes the importance of engaging with difficult conversations, and striking the balance of respecting autonomy and self-determination, within the constraints of each individual’s situation.

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