I offer a principled objection to arguments in favour of legalizing non-voluntary euthanasia on the basis of the principle of beneficence. The objection is that the status of death as a benefit to people who cannot formulate a desire to die is more problematic than pain management care. I ground this objection on epistemic and political arguments. Namely, I argue that death is relatively more unknowable, and the benefits it confers more subjectively debatable, than pain management. I am not primarily (...) referring to the claim that it is difficult to make comparisons between live and post-mortem states, but rather to the fact that it is epistemically and metaphysically problematic to impute a “life-worse-than-death” or a state of “suffering-calling-for-death” to people who cannot subjectively wish to die, as though this kind of suffering were a medically observable fact rather than a belief- and value-laden notion. On the contrary, people enduring similar causes of pain may have different experiences of suffering and views on how it affects the worthwhileness of their existence or the desirability of death or of continuing their lives. The projection of a “suffering-calling-for-death” onto infants or people with severe intellectual disabilities may not be indefensible, but it is more controversial than judging that pain management will improve their well-being from the perspective of beneficence. My argument also relies on our society’s liberal endeavour to avoid endorsing unverifiable beliefs about life and death or controversial conceptions of the good life. My goal is not to suggest we should not attend the suffering of cognitively disabled people. On the contrary, I only cast doubt on too quick an assumption that ending their lives is the best way of caring for them, when robust palliative treatments are available. Moreover, I express the concern that a lack of attention to distinctions between “pain-calling-for-relief” and “suffering-calling-for-death” may be based on ableist projections and assumptions. I conclude that it is imperative to continue research into the nature of pain and suffering experienced by individuals with mental or cognitive impairments preventing them from expressing autonomous wishes about the kind of treatment that would most benefit them. (shrink)

In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient’s best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases —Bland (...) and James —the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster’s argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence. (shrink)

This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, and examines the (...) challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland[1993] AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the ‘burden’ of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being. (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)

Background Supporting physicians in Intensive Care Units s as they face dying patients at unprecedented levels due to the COVID-19 pandemic is critical. Amidst a dearth of such data and guided by evidence that nurses in ICUs experience personal, professional and existential issues in similar conditions, a systematic scoping review is proposed to evaluate prevailing accounts of physicians facing dying patients in ICUs through the lens of Personhood. Such data would enhance understanding and guide the provision of better support for (...) ICU physicians. Methods An SSR adopts the Systematic Evidenced Based Approach to map prevailing accounts of caring for dying patients in ICUs. To enhance the transparency and reproducibility of this process, concurrent and independent use of tabulated summaries, thematic analysis and directed content analysis is adopted. Results Eight thousand three hundred fifty-eight abstracts were reviewed from four databases, 474 full-text articles were evaluated, 58 articles were included, and the Split Approach revealed six categories/themes centered around the Innate, Individual, Relational and Societal Rings of Personhood, conflicts in providing end of life care and coping mechanisms employed. Conclusion This SSR suggests that caring for dying patients in ICU impacts how physicians view their personhood. To resolve conflicts within individual concepts of personhood, physicians use prioritization, reframing and rely on accessible, personalized support from colleagues to steer coping strategies. An adapted form of the Ring Theory of Personhood is proposed to direct timely personalized, appropriate and holistic support. (shrink)

There is a strong presumption in favour of the maintenance of life. Given sufficient evidence, it can be rebutted. But the epistemic uncertainties about the best interests of patients in prolonged disorders of consciousness and the wishes that they should be presumed to have are such that, in most PDOC cases, the presumption cannot be rebutted. It is conventional and wrong to assume that PDOC patients have no interest in continued existence. Treatment withdrawal/continuation decisions should focus on the patient as (...) he or she actually is, and should not unjustifiably assume that the premorbid patient continues to exist unchanged, and that the actual patient has the same interests as the premorbid patient and would make the same decisions in relation to treatment as the premorbid patient would have done. (shrink)