“I wanna live and not think about the future”

21st June 2022

“I wanna live and not think about the future”: what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

Researchers based at the Cicely Saunders Institute set out to investigate the understanding and relevance of advanced care planning (ACP) for people with multiple sclerosis (MS) and their families. The researchers conducted interviews with people living with MS and their families. This was followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families.

Three themes emerged from the interviews with people with MS and their families.

These were: planning for an uncertain future; perceived obstacles to engaging in ACP (including previous negative experiences, and uncertainty) and the importance of a trusting relationship with a health professional and being able to share information across services.

The health professionals saw the ACP as an ongoing process of seeking preferences and values. They also had concerns about uncertainty, and when to initiate ACP-related discussions. Some health professionals had concerns about their own lack of confidence when having these discussions.

The researchers conclude there needs to be a whole system strategic approach, to share information about potential benefits of ACP with people with MS. They highlight the need for health professionals to be skilled and trained in engaging with ACP discussions. They also highlight the need for information to be shared in real-time across services.

Koffman J, Penfold C, Cottrell L, Farsides B, Evans CJ, Burman R et al. “I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study. PLoS ONE. 2022 May 26;17(5):e0265861. https://doi.org/10.1371/journal.pone.0265861