This article approaches the ethical dilemma of healthcare allocation and rationing from the perspective of pragmatist ethics, mainly following John Dewey’s ethics. The moral dilemma of healthcare allocation arises whenever we allocate limited resources, and rationing is a necessary option for distributing available resources. In a broader sense, the moral problems of healthcare allocation also encompass the issue of access to primary healthcare, especially for low-income sections of communities. In this sense, allocation always entails rationing – denying service to someone (...) for the benefit of others. Such aspects of allocation and rationing and the relational aspect of disease and health make the problem morally controversial, which makes it difficult to agree on a principle or principles of allocation and rationing applicable across different contexts. Hence, this paper argues that moral challenges of healthcare rationing ought not to be addressed through the appeal to principles, but rather through deliberation that embraces a more pragmatic and democratic approach to negotiating health resource allocation and rationing. However, this does not mean that moral principles and values are insignificant in healthcare allocation. (shrink)

BackgroundThis paper represents a portion of the findings from one of the first research studies eliciting the lived experience of adults with an early diagnosis of Phenylketonuria living in Ireland. Ireland has one of the highest prevalence rates of PKU in Europe, however, little is known about the experience of Irish adults with PKU. Furthermore, Ireland is one of the first countries in the world to introduce neonatal screening followed by the introduction of long-term dietary therapy over 50 years ago. (...) This study presents the first comprehensive assessment of the lived experience of Irish adults with PKU on long term dietary therapy.MethodsNarrative data was collected from eleven self-selected participants, using semi-structured interviews. The interviews were divided into five sections focused on eliciting a holistic understanding of the lived experience of adults with PKU living in Ireland. Thematic analysis was guided by Colaizzi's Framework in conjunction with NVivo qualitative data analysis software.FindingsFindings from the original research encompassed a broad understanding of the lived experience of adults with PKU living in Ireland, including factors influencing dietary therapy and managing PHE blood levels. The themes being discussed within this article are those which appear to be least represented within current literature: living with PKU, including reproductive health, the importance of self-management and establishing routine, support networks in adulthood and concerns regarding aging with PKU.ConclusionIt was evident from the findings that a diagnosis of PKU can influence how adults with PKU may experience aging and their own mortality. These findings offer new insight into the vulnerability attached to the experience of aging with PKU and may be beneficial to advocacy groups and for future development of policy and practice. (shrink)

ObjectiveTo provide insights on emergent ethical tensions experienced by mental health practitioners during system re-organisation, which is sufficiently grounded in empirical data at the local level to inform policy on recovery at institutional and provincial levels.MethodEthnographic methods using narrative and critical phenomenological resources over 24 months.FindingsEveryday ethical tensions emerged at the confluence of different experiences of time, for example, how a context of increasing pressure to decrease patients’ length of stay at the hospital challenged efforts to listen to and advocate (...) for what mattered to patients and maintain the integrity of interventions. In this context, practitioners drew on clinical language and that of personal recovery to strategically ‘push back’, ‘play with’ or ‘take back’ time.DiscussionExamining everyday practices through ethnographic methods can illuminate the everyday ethical tensions that arise when mental health professionals and psychiatrists grapple with, often competing, goods. Critical phenomenological resources can help expand the structural considerations in empirical ethics, excavate underground practices and raise questions about the conceptual categories undergirding normative ethics. Experiencing-with practitioners in clinical contexts as they encounter and creatively resolve ethical tensions also propose a normative ethics of possibility, to help bridge the gap between empirical and normative ethics.ConclusionFocus on the relationship between policy, temporal practices and ethics suggests a reconfiguration of time and re-imagination of ethics in institutional settings in ways that can ultimately benefit patients and professionals alike. (shrink)

The initial successes in recent years in harnessing machine learning technologies to improve medical practice and benefit patients have attracted attention in a wide range of healthcare fields. Particularly, it should be achieved by providing automated decision recommendations to the treating clinician. Some hopes placed in such ML-based systems for healthcare, however, seem to be unwarranted, at least partially because of their inherent lack of transparency, although their results seem convincing in accuracy and reliability. Skepticism arises when the physician as (...) the agent responsible for the implementation of diagnosis, therapy, and care is unable to access the generation of findings and recommendations. There is widespread agreement that, generally, a complete traceability is preferable to opaque recommendations; however, there are differences about addressing ML-based systems whose functioning seems to remain opaque to some degree—even if so-called explicable or interpretable systems gain increasing amounts of interest. This essay approaches the epistemic foundations of ML-generated information specifically and medical knowledge generally to advocate differentiations of decision-making situations in clinical contexts regarding their necessary depth of insight into the process of information generation. Empirically accurate or reliable outcomes are sufficient for some decision situations in healthcare, whereas other clinical decisions require extensive insight into ML-generated outcomes because of their inherently normative implications. (shrink)

Healthy Eating Policy and Political Philosophy: A Public Reason Approach by Barnhill and Bonotti is a terrific effort to provide a systematic method for appraising the ethical aspects, broadly understood, of regulations and policies connected to food, diet, and eating. In this commentary I purport to highlight the originality and the merits of the volume by considering what it doesn’t accomplish in three of its parts. I first call attention to the specific construction of the subject matter, namely on the (...) question whether to be at stake are eating behaviors, dietary patterns, or certain food items; while Barnhill and Bonotti do not problematize it, this question is arguably pivotal to design effective policies and to adequately assess them. Second, I discuss the technical concept of “constitutive evaluative standards,” used by Barnhill and Bonotti to lay out their view, as this part of their work calls for an alignment with research on the philosophy of nutritional science and, more generally, philosophy of science. Finally, I take up the technical concept of “accessible reason,” which plays a central role in ascribing the public status to reasons, advocating for a more thorough determination of this concept based on recent work in epistemology. (shrink)

How can humanist principles of respect, dignity, and care inform and improve design for non-human lifeforms? This paper uses ageing and dying urban trees to understand how architectural, urban, and landscape design respond to nonhuman concerns. It draws on research in plant sciences, environmental history, ethics, environmental management, and urban design to ask: how can more-than-human ethics improve multispecies cohabitation in urban forests? The paper hypothesises that concepts of dignity and respect can underline the capabilities of nonhuman lifeforms and lead (...) to improved designs for multispecies cohabitation. To investigate the implications of this ethical framework, we 1) indicate injustices of current management in relation to natural and cultural histories of trees; 2) outline a conceptual framework that includes large old trees as stakeholders in urban communities; and 3) use this framework in a thought experiment with urban trees in Melbourne, outlining comparative design outcomes. Our findings show that the expansion of dignity to include nonhuman life is possible and plausible. Such an extension can justify and encourage design innovation for multiple species and sites. The resulting design practices will lead to improvements by supporting communities of trees at all stages of their life-cycles, including old age, death, and rebirth. This approach requires substantial shifts in accepted thinking and practices including history, ethics, aesthetics, regulation, and education. Design can play a significant role in the necessary transitions by demonstrating tangible and positive outcomes. In this context, history emerges as an essential tool that can extend societal imagination by situating possible future places in the context of ancient and ongoing geological, evolutionary, ecological, and cultural processes. (shrink)