End-of-life communication in the context of MAID: a qualitative study on the perspectives and preferences of individuals living with MS

Saskatchewan, Canada, has one of the highest prevalence rates for multiple sclerosis (MS) in the world, and as treatment options evolve, individuals living with MS (ILMS) are living longer. Medical assistance in dying (MAID) has been a legal end-of-life (EOL) care option in Canada since 2016, and some individuals living with MS are choosing this option as they age and/or their disease progresses. Given the complexity of MS, including the risk of fluctuating capacity in end-of-life decision-making, ongoing communication about EOL options is essential. However, sparse information is available regarding individuals’ perspectives on communication when discussing end-of-life care, particularly when MAID is a legally available option. This project addressed this gap. A qualitative research project using the Interpretive Description methodology was completed. The data set included twenty-seven interviews with individuals living with MS and healthcare professionals, participant contextual and demographic data (including the Multiple Sclerosis Impact Scale-29 and the Patient-Determined Disease Steps), interviewer field notes, and reflective content. Descriptive statistical analysis and inductive reflexive thematic analysis were completed. Participants identified the importance of (1) Forging trust, (2) Framing information, (3) Facilitating conversation, (4) Balancing timing, and (5) Navigating misinformation when discussing end-of-life care when MAID is a legally available option. Participants emphasized the need for a trusted relationship with their healthcare professionals to discuss EOL options without hesitation and fear. They also highlighted that end-of-life care information should be inclusive of all options and made available in various formats. They acknowledged that these conversations are complex and sometimes avoided, and how, after overcoming their fear and hesitancy, they felt gratitude or relief in being able to talk about end-of-life issues. Participants also shared that the most effective decision-making time occurs during periods of illness stability. Participants identified a need for reliable resources to address misinformation and facilitate informed decision-making. The findings support end-of-life care planning throughout the MS care trajectory. Through relationships, access to accurate and inclusive information on EOL and conversations during periods of relative illness stability, an informed and person-centred decision-making process can be facilitated.