A talk by Dr Marcus Redley (University of Cambridge) on his work on mothers' involvement in treating decisions effecting adult sons and daughters with epilepsy who are at risk of lacking decision-making capacity.
Patient choice has become a central tenant of health service reform in the United Kingdom, where it is supposed that patient wellbeing is best enhanced through individual choices, and that the unintended collective consequences of individual choices leads to institutional reform: a health service better able to meet patients' needs. This paper, through a study of treatment-decisions for epilepsy amongst adults at risk of lacking decision-making capacity, due to an intellectual disability (known as a learning disability in England), considers 'shared decision-making' and its potential for improving both patient outcomes, and services. The analysis based on interviews with mothers of an adult son or daughter with an intellectual disability and epilepsy, documents:(i) mothers' involvement in treatment decisions and in particular their reluctance to countenance changes in treatment, and (ii) the willingness of clinicians to agree to, or at least assent to, the wishes of these mothers. The implications of this finding for the wellbeing of adults at risk of lacking the capacity to make decisions about treatment, and the design of epilepsy services, are discussed.
Marcus Redley is a member of the Cambridge Intellectual and Development Disability Research Group at the University of Cambridge.
Suggested Reading: White Paper, Equality And Excellence: liberating the NHS.