• Clinical Ethics
• Living Wills/Advance Directives
• Pain Management
• Quality/Value of Life/Personhood

In the case of Re M, the English Court of Protection ruled that it would be unlawful to withdraw artificial nutrition and hydration (ANH) from a woman who had been in a minimally conscious state (MCS) for 8 years.1 As summarised in the paper by Julian Sheather, the Court reasoned that ‘the sanctity of life was the determining factor and it would not be in M's best interests for ANH to be withdrawn.’2 This reasoning is flawed on two counts. First, it conflates the principle of the sanctity of life with the best interests test. One cannot be invoked to support the other because they are conceptually distinct and also because in many cases they are incompatible. Second, and more importantly, continued ANH was not in M's best interests because the burdens of this life-sustaining treatment for this minimally conscious patient outweighed any benefits.

Sanctity of life pertains to the ‘non-instrumental value of human life, to respect for life's intrinsic value.’3 This objective value obtains independently of quality-of-life considerations and the subjective value and interests of the person whose life it is. The life that is sanctified on this principle is usually the biological life of a human organism, as distinct from the psychological life of a person defined in terms of the capacity for conscious awareness. In cases of severe brain injury, when there is intact brainstem and metabolic function but no integrated thalamic-cortical-brainstem function necessary to sustain awareness, the human organism continues to exist but the person ceases to exist. If there is intrinsic value in the biological life of a human organism, then some would argue that life support should be sustained to ensure that this life continues, even if there is only minimal brainstem and metabolic function. Yet if all biological life is intrinsically valuable and as such justifies continued life-sustaining treatment, then this blurs the morally significant differences between individuals in a vegetative state and those in a minimally conscious state. These differences hinge on empirical evidence indicating that only the latter have the awareness necessary to experience pain and suffering and possibly an interest in continued life.

The Court may have invoked the sanctity-of-life principle believing that the ‘fatal consequence’ of withdrawing ANH would harm M. This rests on the mistaken assumption that death always harms a person. Death resulting from the removal of life-sustaining treatment does not harm a patient if the treatment has no therapeutic effect. What determines whether continuing or withdrawing treatment harms a person is whether it defeats her interest in continuing or ending her life in light of its burdens and benefits. The Court claimed that the emphasis in deciding to continue or withdraw ANH should not be on the patient's previous statements but on her ‘current welfare.’ Yet a person's current welfare presupposes having an interest in experiencing life in a positive way. Most people have an interest not merely in sustaining biological life but having a life of a certain quality at all times when they exist. Few would want to remain alive in a severely compromised neurological and psychological state. M's earlier statement that she would not want to remain alive in a completely dependent condition is a clear expression of this interest. It is not the sanctity of life but the balance between benefits and burdens that is ethically relevant in this case. This balance involves pain and pleasure and also the extent of the patient's cognitive and physical disability and recovery of mental and bodily functions. Counsel and the patient's family were right in arguing that the decisive factor was the patient's previous wishes and feelings. Although these wishes and feelings were not formalised in an advance directive, there is no reason to suppose that they would be any different while she was in the MCS. If a patient's current welfare is what matters, then an assessment of this in terms of current burdens and benefits of ANH for her should guide the decision about this intervention.

Some may question whether an individual in an MCS has a sufficient degree of consciousness to have interests. Because M was diagnosed as being at a moderate level on the MCS spectrum, it is reasonable to assume that she did have interests. The crucial question is whether she had an interest in continued life and continued life-sustaining treatment. Assessing the content of her interests and her current welfare is difficult, however, because of inability or difficulty in clearly communicating any wishes she might have while in the MCS. Some of these patients may be able to respond with ‘yes’ and ‘no’ answers to questions about their care. But these should not be taken as evidence of understanding the consequences of continuing or withdrawing care and giving informed consent or dissent regarding that care. This requires some capacity to discuss and clearly express one's wishes about treatment options to healthcare providers. Minimally conscious patients lack this capacity.4

The extent of M's pleasure and pain could be assessed with some degree of accuracy by observing her behaviour. The expert evidence that ‘M is regularly in pain’ is significant. It is consistent with imaging studies indicating that MCS patients have an active pain matrix in their brains and can experience pain.5 In spite of this, Sheather writes that, from the Court's perspective, ‘her life did contain some positive pleasures’ and that there ‘was every possibility that these could be increased by enhanced care.’ Presumably, this would be enough to justify continuing ANH. But this ignores the fact that M experienced unremitting pain. It also ignores the fact that, while some MCS patients have recovered some degree of cognitive and physical functions, none of these patients has recovered these functions to preinjury levels and most remain severely disabled.6 Other than analgesia, it is unclear to which interventions ‘enhanced care’ refers. Pleasure-improving care does not depend on or lead to improvement in cognitive functions, and accordingly these two issues should be distinguished. Moreover, something less than full recovery of the relevant functions may be enough for a patient to have a net positive experience. Still, a reasonable level of quality of life implies a sufficient degree of pain control and a sufficient degree of functional recovery, such that the patient is not completely dependent on others. M's condition suggested that neither of these obtained in her case.

Deep-brain stimulation has increased the level of awareness and improved physical and cognitive functions in one patient.7 But he remained severely disabled following the procedure. The sedative-hypnotic drug zolpidem has increased awareness and resulted in behavioural improvements in some MCS patients.8 Yet questions remain about how beneficial these improvements have been to them.9 Increasing awareness in these patients through enhanced care could increase their perception of pain and cause them to suffer by allowing them to anticipate painful experiences. They could also suffer from the experience of being completely dependent on others. Without a corresponding improvement in pain management and cognitive and physical functions, an increase in conscious awareness to a moderate or higher level could result in more harm than a lower level of awareness.10 Indeed, the harm could be greater for a minimally conscious patient than a vegetative patient, who either lacks the conscious capacity to experience pain and suffer or else has it to a much lesser extent. It is significant that M had been in an MCS for 8 years with little if any alleviation of her pain. If she was at a moderate level on the MCS spectrum during this period, then she probably experienced considerable pain and suffering throughout it. This, plus the lack of proven therapies and adequate analgesia for her condition, casts further doubt on the possibility of an increase of M's pleasures through medical interventions. Sheather writes that a judge in the case claimed that ‘the pleasures of life of the disabled,’ though at times ‘smaller,’ should not thereby be discounted.’ The point is not that these pleasures should have been discounted, and there was no indication that Counsel was making this claim. Rather, the point is that these pleasures were outweighed by the pain and likely suffering of the patient.

The poor prognosis for MCS patients, the fact that M was regularly in pain and likely suffering from it, her complete dependence on others, and the lack of restorative therapies made the burdens outweigh the benefits for her. Thus continued ANH was not in M's best interests and should have been withdrawn. Future cases in which families, medical teams and courts must decide on ANH for MCS patients should not ignore earlier known wishes of patients not to be treated if they become severely neurologically and psychologically compromised. Even if verbally expressed wishes are not formalised in an advance directive, they should be taken seriously because these are not the sorts of states in which most people would want to live. Continuing treatment could harm patients with disorders of consciousness by defeating their interest in not living in these states. A sufficient number of clinical trials involving this patient population are needed to assess the safety and efficacy of pharmacological or surgical interventions that might control pain and restore cognitive and physical functions to beneficial levels. Until this happens, the burdens for a patient such as M in a prolonged MCS with no little or no prospect of significant recovery of these functions tip the balance in favour of withdrawing ANH.