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.