Moral rights feature prominently and are relied on substantially in debates in bioethics. Conceptually, however, duties can perform the logical work of rights, but not vice versa, and reference to rights is therefore inessential. Normatively, rights, like duties, depend on more basic moral values or principles, and attempts to establish the logical priority of rights over duties or the reverse are misguided. In practical decision making, however, an analysis in terms of duties is more fruitful than one based on rights. (...) A right may function as a proxy term for a consequentialist rule, or for a deontological constraint, but does not thereby enrich these concepts. Rights may also help in a purely expressive sense and may assist an initial focusing on a moral conflict. However, their role in bioethics discourse is more one of convenience than of necessity. Moreover, unless rights are firmly founded on fundamental moral values, their use encourages rhetoric rather than argument. (shrink)

A recent legal case involving an ambiguous diagnosis in a woman with a severe disorder of consciousness raises pressing questions about treatment withdrawal in a time when much of what experts know about disorders of consciousness is undergoing revision and refinement. How much should diagnostic certainty about consciousness matter? For the judge who refused to allow withdrawal of artificial nutrition and hydration, it was dispositive. Rather than relying on substituted judgment or best interests to determine treatment decisions, he ruled that (...) withdrawal was categorically prohibited, even as he concluded that Hannah Capes was more likely than not in a permanent vegetative state. In many jurisdictions, his decision would likely be consistent with existing law. Evolving technological advances have demonstrated that biologically distinct diagnoses incorporated into state laws may be difficult to establish even under ideal conditions. We offer the Capes case for purposes of examining the consequences of enshrined legal distinctions between permanent vegetative state and other severe disorders of consciousness. Insistence on proof of the permanent absence of consciousness before treatment withdrawal is allowed fails to respect the rights of persons with disorders of consciousness. Even the well-established rights to treatment withdrawal for those in a permanent vegetative state may be in jeopardy if reform is not undertaken. (shrink)

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)

This paper critically engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the problem of accurately measuring the welfare (...) burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (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 minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent comm...

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)

Badania przy użyciu rezonansu magnetycznego sugerują, że przynajmniej niektórzy pacjenci w tzw. stanie wegetatywnym mogą być bardziej „świadomi”, niż to się do tej pory wydawało. W artykule zamierzam omówić te badania; następnie rozważę, o jakie rozumienie pojęcia świadomości może w nich chodzić; a wreszcie zastanowię się nad etycznymi implikacjami tych odkryć. Zamierzam też rozważyć, czy posiadanie wyższych form świadomości zawsze ma być dodatkową racją przemawiającą przeciwko zaprzestaniu podtrzymywaniu funkcji życiowych. Tym samym, w artykule chciałbym wskazać istotność badań z zakresu kognitywistyki (...) dotyczących pojęcia świadomości dla etycznej oceny pewnych praktyk medycznych. (shrink)