Supporting people with multiple sclerosis: respecting their autonomy and managing risk

Abstract

Patients with advanced multiple sclerosis may experience significant symptom burden and cognitive impairment. As they continue to live with their illness and adapt to their changing abilities and needs, opportunities to discuss their wishes for the future are not always obvious and there needs to be an emphasis on creating these opportunities. Without these discussions, those who provide care, both informal and formal, can be faced with the need to make decisions on behalf of the patient. When decisions are made that bring a degree of risk to ongoing care, there needs to be an emphasis on support for the family, friends and healthcare team, to ensure that all involved understand the decisions made and the importance of supporting and respecting patient autonomy.