Understanding how people living with MND make decisions about treatment

Exploring whether the decision-making process involved in consenting to medical treatment is affected in some people living with MND, and identifying the types of support that may be helpful during this decision-making process.

People living with MND have to make important decisions throughout their illness. One decision highlighted by clinicians and people living with MND is whether or not to engage in specific medical treatments, which may improve their quality of life and prolong survival. Up to 50% of people living with MND experience changes in their thinking and behaviour as a result of damage to the frontal parts of the brain, with 15% developing a form of dementia. Such changes may include problems with planning, organisation and decision-making. However, it is currently unknown whether these changes have an impact on a person’s ability to consent to medical treatments.

This study will explore if the decision-making process involved in consenting to medical treatment is affected in some people living with MND and identify if there are any parts of this process which are difficult for them. It also aims to identify the types of support that may be helpful during the decision-making process to enable the person to maintain the capacity to make treatment decisions.

This study is being run by Dr Milena Contreras and Professor Sharon Abrahams at the University of Edinburgh.