In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” (...) as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion. (shrink)

Several types of inferences are employed in the diagnosis and prognosis of patients with brain injuries and disorders of consciousness. These inferences introduce unavoidable uncertainty, and can be evaluated in light of inductive risk: the epistemic and nonepistemic risks of being wrong. This article considers several ethically significant inductive risks generated by and interacting with inferences about patients with disorders of consciousness, and argues for prescriptive measures to manage and mitigate inductive risk in the context of disorders of consciousness.

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration, should continue to be provided to a patient in a minimally conscious state. Formally concerned with the English law pertaining to precedent autonomy (specifically advance decision-making) and the best interests of the incapacitated patient, the judgment issued in M's case implicitly engages with three different accounts of the value of human (...) life, which respectively emphasise its self-determined, intrinsic and instrumental value. The judge appeared to be most persuaded by the intrinsic value of life and he concluded that treatment ought to continue. Assessing whether his approach or conclusion were ethically appropriate involves significant substantive and evidential questions regarding where the burden of proof should lie and what standard of proof should be required when decisions are to be made about the fates of patients inhabiting ‘twilight worlds’. (shrink)

This article explores the taxing legal questions that are raised in the context of withdrawing life sustaining treatment from patients who are in a minimally conscious state. The Court of Protection, for the first time in England, was recently asked to rule on this issue. This paper analyses the legal and ethical implications of this decision moving forward.

Wilkinson and Savulescu did not agree with the court's decision to continue M's treatment and suggested in their recent commentary that the magnitude of benefits of being alive for M is small compared with the potential use of health resources for other patients. We argue that the benefits of being sensate to the surroundings for an otherwise unconscious person are not necessarily small. One cannot assess on behalf of another person the magnitude of benefits of being alive according to the (...) intensity or the duration of negative experiences. Denying life-sustaining treatment to patients in a minimally conscious state solely on the grounds that they are less capable of enjoying the benefits represents grave discrimination against disabled persons. For patients in a minimally conscious state who have not delegated a surrogate or made any advance decision about their medical treatment, the duty of doctors is to preserve their right to self-determination and maximise their capacity to enjoy their life. M should live on, and life-sustaining treatment should not be withdrawn. (shrink)

The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right of free choice entail (...) allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)