title: Understanding the decision-making environment for people in minimally conscious state.
abstract: Patients in minimally conscious state (MCS) show minimal, fluctuating but definitive signs of awareness of themselves and their environments. They may exhibit behaviours ranging from the ability to track objects or people with their eyes, to the making of simple choices which requires the ability to recognise objects and follow simple commands. While patients with MCS have higher chances of further recovery than people in vegetative states, this is not guaranteed and their prognosis is fundamentally uncertain. Therefore, patients with MCS need regular input from healthcare professionals to monitor their progress (or non-progress) and to address their needs for rehabilitation, for the provision of an appropriate environment and equipment. These requirements form a backdrop to the potentially huge variety of ethical-legal dilemmas that may be faced by their families, caregivers and ultimately, the courts. This paper analyses the decision-making environment for people with MCS using data obtained through four focus groups which included the input of 29 senior decision makers in the area. The results of the focus group study are presented and further explored with attention on recurrent and strong themes such as lack of expertise, resource issues, and the influence of families and friends of people with MCS.
authors.affiliation: a Research Department , Royal Hospital for Neuro-disability , London , UK.
authors.forename: Kudret
authors.initials: K
authors.lastname: Yelden
authors.affiliation: b School of Law , University of Buckingham , Buckingham , UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Sargent
authors.affiliation: c Leicester De Montfort Law School , De Montfort University , Leicester , UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Samanta
mesh_terms: D000066491:Clinical Decision-Making / Q000379:methods; D003244:Consciousness Disorders / Q000628:therapy*; D003657:Decision Making; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000523:psychology; D006801:Humans; D033241:Lawyers / Q000523:psychology; D036301:Qualitative Research
keywords: Minimally conscious state; decision-making; disorders of consciousness; focus groups; reassessment