End-of-life Decision-making for People in a Minimally Conscious State: A Review of the Application of the Mental Capacity Act 2005

The last 15 years has seen clarification of the terminology used to describe prolonged disorders of consciousness within the United Kingdom leading to the emergence of a new diagnosis – minimally conscious state (MCS) in 2002. MCS is distinct from vegetative states, in that a person demonstrates wakefulness with some degree of minimal awareness. The Mental Capacity Act (MCA) 2005 in England and Wales provides a legal framework for assessing an individuals’ capacity to make decisions for themselves. The Act also authorizes others to make decisions on behalf of an individual who is assessed as lacking capacity in their best interests. The Act has an accompanying Code of Practice which provides guidance and a best interests “test” to be applied when assessing best interests. Since the advent of the Act, approximately two cases each year go to the Court of Protection for final decisions regarding end-of-life care in people in an MCS. Currently, any decision involving the withdrawal of clinically assisted nutrition and hydration (CANH) for people in an MCS must be referred to the court. In each case, the courts analyze the application of the Act which has become central in the court's decision-making process, particularly when assessing best interests. This article provides an overview of key MCA sections applied in such end-of-life MCS cases and reviews seminal cases elucidating how the Act has been applied. It further describes the evolution of how courts have interpreted the doctrine of best interests when considering withholding or withdrawing CANH and other life-sustaining treatments.