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)

Most jurisdictions require a patient to consent to any medical intervention. Clinicians ask a patient, ‘Given the pain and distress associated with our intervention and the predicted likelihood of this best-case outcome, do you want to accept the treatment?’ When a patient is incapable of deciding, clinicians may ask people who know the patient to say what the patient would decide; this is substituted judgement. In contrast, asking the same people to say how the person would make the decision is (...) substituted interests.1 The UK Mental Capacity Act 2005 uses the latter approach, and my comments appertain to that approach. When a patient lacks capacity, the question facing clinicians is, ‘Given the likely outcome of this treatment plan for the patient’s life in the long term, would the patient decide to accept the plan?’ This answer depends on the patient’s wishes, values and other factors they would use when deciding. The proposed development of an algorithm involves the following:2. (shrink)

Professor Charles Foster1 argues that the recent decision by the Supreme Court2 on the process of making decisions about medical treatment in people who lack capacity due to a prolonged disorder of consciousness is fostering medical paternalism. He considers that the judgment shows ‘ deference to the guidelines of various organisations ’ and then that ‘ The guidance has effectively become a definitive statement of the relevant obligations,’ concluding that ‘ This usurps the function of the law.’ Healthcare teams make (...) all decisions concerning medical care provided; no-one else can. Both the clinicians themselves, and any guidance provided to them, must comply with the Mental Capacity Act 2005.3 Lady Black’s judgment makes clear that ‘ The basic protective structure is established by the MCA 2005 ’ and that the associated Code of Practice4 ‘ contains valuable guidance ’. She specifically highlights that the decision-maker must ensure that ‘ account has been taken of the patient’s previously expressed wishes and those of people close to him, as well as the opinions of other medical personnel. The MCA 2005 requires this to happen, and is reinforced by the professional guidance available to doctors.’ The Act says: ‘ He must consider, so far as is reasonably ascertainable— 1. the person’s past and present wishes and feelings (and, in …. (shrink)