Understanding the decision-making environment for people in minimally conscious state

ABSTRACT Patients in Minimally Conscious States (MCS) show minimal, fluctuating but definitive signs of awareness of themselves and their environments. They may exhibit behaviors ranging from the ability to track objects or people with their eyes, to the making of simple choices which requires ability to recognize 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); 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, care-givers and ultimately, the courts. This paper analyses the decision-making environment for people with MCS using data obtained through four focus groups which included 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 families of people with MCS.