Pat McConville

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose prior health. These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity.

The COVID-19 pandemic has occasioned a great deal of ethical reflection both in general and on the issue of reverse triage; a practice that effectively reallocates resources from one patient to another on the basis of the latter having a more favourable clinical prognosis. This paper addresses a specific concern that has arisen in relation to such proposals: the potential reallocation of ventilators relied upon by disabled or chronically ill patients. This issue is examined via three morally parallel scenarios. First, the standard reallocation of a ventilator in accordance with reverse triage protocols; second, the reallocation of a personal ventilator from a chronically ill patient ordinarily reliant on it; and, third, the reallocation of a personal ventilator owned by a financially privileged individual but who is not ordinarily reliant on it. This paper suggests that whilst property rights cannot resolve these scenarios in a satisfactory manner, it may be possible to do so if we draw on the resources of phenomenology. However, in contradistinction to a recent paper on this topic, we argue that ethical claims to ventilators are not well grounded by the overly demanding notion that they are embodied objects. We suggest that the alternative phenomenological notion of homelikeness provides for a more plausible resolution of the issue. The personal ventilators of individuals who commonly rely upon them become part of their ordinary, everyday or homelike being. They are a necessary part of the continuation or maintenance of their basic state of health or wellbeing and the reallocation of such objects is unethical. Keywords: Phenomenology, COVID-19, Pandemic, Triage, Reverse triage, Ventilation, Chronic illness, Allocation of resources.

Therapeutic misconception involves the failure of subjects either to understand or to incorporate into their own expectations the distinctions in nature and purpose of personally responsive therapeutic care, and the generic relationship between subject and investigator which is constrained by research protocols. Researchers cannot disregard this phenomenon if they are to ensure that subjects engage in research on the basis of genuine informed consent. However, our presumption of patient autonomy must be sustained unless we have compelling evidence of serious misunderstanding. This article argues that the mere expression of aspects of therapeutic misconception should not necessarily displace the presumption of subject autonomy or undermine ethical inclusion in research for at least three reasons. First, some interpretations of the empirical data do not suggest misunderstanding. Second, assessment of misestimation and optimism are delicate and value-laden, and turn quickly from questions of autonomy to questions of judgment. Third, incomplete understanding may yet be sufficient to allow a subject to engage in a substantially autonomous decision-making process. Our point is not to dismiss the possibility of genuine therapeutic misconception, but to question its frequency and fatality to the consent process.

Phenomenology has a rich tradition of interpreting technology, medicine, and the life sciences. It has not yet had much to say about the medical devices which have always been central to bioethics. In this chapter, I outline what is meant by medical devices, and connect the sense of intention in made-object design with the notion of intentionality in phenomenology. I survey three basic ways of characterising medical devices grounded in the phenomenological literature: Albert Borgmann’s device paradigm, Don Ihde’s human-machine relations, and Merleau-Ponty’s body-subject. Engaging with these approaches could help bring to analyses of medical devices the uniquely whole-of-context view of which phenomenology is capable, and better inform all stakeholders about their phenomenal consequences.

In this paper, I argue that the video game Asteroids’ enduring appeal turns on its ability to be read as futurist text. I connect Asteroids’ black and white aesthetic to the phenomenologist Vivian Sobchack’s notion of postfuturism. Central to postfuturism is a change from representations of space as deep to representations of space as surface, incapable of concealment. I consider materials designed to absorb almost all visible light—which I call holoblacks—as pushing past representations of space as surface into a paradigm of non-representation of space or space as non-representation. I argue that this non-representation is what is meant by Martin Heidegger in the concept of a thing. I therefore offer an interpretation of Heidegger’s Lichtung, or clearing, in which holoblacks act as a vehicle for the gathering, disclosure and nearing of world which I call ‘clearance futurism’. I conclude by reading Asteroids as a clearance futurist text.