Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of the English Mental Capacity Act 2005 and using (...) time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness. The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process. (shrink)

Currently, in England and Wales, Court of Protection’s Practice Directive 9E (PD9E) requires all cases of proposed withdrawal or withholding of life-sustaining treatment in relation to adults in a permanent vegetative state (PVS) or minimally conscious state be referred to the Court. This paper looks at the origins of PD9E and contrasts the routine requirement to refer cases to court with the complex clinical terrain that comprises those suffering from prolonged disorders of consciousness. We look at the role of the (...) court in decision making in these contexts and we ask what role the courts are called on to play in these decisions. We argue that PD9E, as currently drafted, is too imprecise to achieve its purpose. With our focus always on the best interests of patients, we argue that most decisions of this nature should be made according to a strict protocol but without the need for court approval. Court overview should be reserved for cases of disagreement between those involved in the decision that cannot be resolved by other methods, where there are serious doubts about the individual’s best interests or where there are legally untested aspects to the decision. (shrink)