Journal of Bioethical Inquiry, Volume 18, Issue 4, 2021
Michael Ashby
Extract As we age, it is so easy to slip into the trap of lamentations: that there were salad days when values were nobler and better upheld, civility reigned, and localism meant that people were more connected. Of course this is not altogether true, and there is much in the past social structures in race, gender, and hierarchy, for instance, that are in slow painful processes of change for the better. However, the river of time brings gains and losses, and human connection appears to be one casualty for many in the modern world, especially with the remorseless grind of the continuing pandemic which is the subject, once again, of a number of papers in this edition of the Journal of Bioethical Inquiry.
Recent research work by the American grief expert Robert Niemeyer and colleagues in Memphis and Australia, show very high levels of distress and impairment of function for those who have experienced the death of close people from COVID-19, in fact amongst the highest recorded for trauma and disasters in the past. Some of the key indices that drove these high scores are related to people dying alone and limited funeral rites—in other words, it appears that, perhaps unsurprisingly, grief in this pandemic has been aggravated by limits to intimacy and connection, and that we can cope with almost anything with human solidarity and connection (Niemeyer 2021).
Piers M. Gooding & David M. Clifford
IntroductionA recent addition to technologically enabled practices in healthcare that create new ethical and legal issues is “video-algorithmic patient monitoring.” We use this term to describe an assemblage of video sensors and algorithmic software that enable nurses to make remote, non-contact clinical observations of patients in hospital environments. Terminology remains unsettled for this practice, as it often does in areas of rapid technological change. Other definitions include “artificial intelligence-enabled audio-visual surveillance and monitoring” (McDonald 2021), “vision-based patient monitoring and management” (Lloyd-Jukes et al. 2021) and “digitally assisted nursing observations” (Barrera et al. 2020). Video-algorithmic patient monitoring has been trialled in several countries on specific patient populations including on “renal patients undergoing dialysis, neonates in intensive care, adults in intensive care, and patients and staff in a high-security mental health setting” (Barrera et al. 2020). The technology is also being used by care services for older persons and persons with disabilities, including those with mental health conditions (McDonald 2021) and will be likely used in home-based care, particularly for older persons (Lange and Maruthappu 2019) if indeed this is not already occurring.
For the purposes of this commentary, we will focus on video-algorithmic patient monitoring in acute psychiatric settings, where it is at experimental stages (Barrera et al. 2020). Novel ethical and legal issues arise in the mental health context, particularly as semi-automated nursing may seek to analyse patient behaviour, such as those associated with self-harm, assault, and suicide, and not just physiological matters such as pulse and breathing rates. The behavioural component potentially shades into “surveillance,” where “surveillance” is defined as comprising a “[w]atch or guard kept over a person … ; often … supervision; less commonly, supervision for the purpose of direction or control, superintendence” (Oxford English Dictionary 2018). This is also the case where monitoring extends to surveilling against staff malpractice (see Lloyd-Jukes et al. 2021). Further, a significant proportion of inpatients in acute mental health settings are detained and treated involuntarily (over 50 per cent in some acute public mental health systems), which carry the associated and vexed questions of upholding free and informed patient consent.
Regardless of these specificities, the ethical and legal issues raised by video-algorithmic patient monitoring in psychiatric settings are relevant beyond the mental health context and concern potential futures of healthcare and human care more broadly.
Afsaneh Shirani
ExtractI read with interest the paper by Elias and Paradies on ethical implications of racism and various costs associated with racism occurring at the institutional level (Elias and Paradies 2021). The authors should be commended on their timely and insightful article. My comments are focused on a less visible form of racism involving racial exclusion of scholarly citations in academic publications based on my personal experience.
Anita Ho & Vivian Huang
Abstract
Uncertainty is inherent in new and unexpected viral outbreaks such as the current COVID-19 pandemic. It imposes challenges for health officials in soliciting cooperative behavioural changes based on incomplete information. In this paper, we use evolving mask recommendations in the United States as an example to analyse the ethical importance and practical demonstration of trustworthiness in pandemic messaging and decision-making. We argue that responsible public health interventions in the time of uncertainties requires explicit intersecting ethical considerations both in action and in communication to promote trustworthiness. First, as public health decisions have to be made in the face of incomplete and evolving data, health officials need to exhibit competence while committing to epistemic humility. They can explain the methods used in making and updating mask recommendations as well as explicitly acknowledge the need to incorporate sociocultural and other contextual considerations in translating scientific data into mask recommendations. Second, officials and agencies must uphold and communicate decisional transparency as part of their effort to demonstrate accountability and promote the public’s understanding of the evolving pandemic. Third, especially since both the pandemic and mask recommendations may have disparate impact on different populations, officials should start with the fair implementation of the least restrictive measures that can help reduce harm.
Jessica Cooper, Neofytos Dimitriou & Ognjen Arandjelovíc
AbstractIn an era when public faith in politicians is dwindling, yet trust in scientists remains relatively high, governments are increasingly emphasizing the role of science based policy-making in response to challenges such as climate change and global pandemics. In this paper we question the quality of some scientific advice given to governments and the robustness and transparency of the entire framework which envelopes such advice, all of which raise serious ethical concerns. In particular we focus on the so-called Imperial Model which heavily influenced the government of the United Kingdom in devising its response to the COVID-19 crisis. We focus on and highlight several fundamental methodological flaws of the model, raise concerns as to the robustness of the system which permitted these to remain unchallenged, and discuss the relevant ethical consequences.
Sydney Campbell
Abstract Adultcentrism is an inherent feature of the social fabrics comprising most resource-rich countries in the twenty-first century that undermines the capacities, value, and voices of young people in various ways. In the context of COVID-19, we are confronted with the question of whose voice matters and must ask: is adultcentrism ethically permissible during a pandemic? This Critical Controversy examines this question in relation to evolving concepts of childhood, children’s rights, and the capacities of young people, to highlight areas of tension, future research, and potential for critical dialogue.
C. Delany, S. Jones, J. Sokol, L. Gillam & T. Prentice
Abstract Being a healthcare professional in both paediatric and adult hospitals will mean being exposed to human tragedies and stressful events involving conflict, misunderstanding, and moral distress. There are a number of different structured approaches to reflection and discussion designed to support healthcare professionals process and make sense of their feelings and experiences and to mitigate against direct and vicarious trauma. In this paper, we draw from our experience in a large children’s hospital and more broadly from the literature to identify and analyse four established approaches to facilitated reflective discussions. Each of the four approaches seeks to acknowledge the stressful nature of health professional work and to support clinicians from all healthcare professions to develop sustainable skills so they continue to grow and thrive as health professionals. Each approach also has the potential to open up feelings of uncertainty, frustration, sorrow, anguish, and moral distress for participants. We argue, therefore, that in order to avoid unintentionally causing harm, a facilitator should have specific skills required to safely lead the discussion and be able to explain the nature, scope, safe application, and limits of each approach. With reference to a hypothetical but realistic clinical case scenario, we discuss the application and key features of each approach, including the goals, underpinning theory, and methods of facilitation.
David M. Shaw
Abstract We have a responsibility to obey COVID-19 rules, in order to minimize risk. Yet it is still seen as rude to challenge people who do not respect those rules, when in fact the opposite is true; it is rude to increase risk to others. In this paper I analyse the relationship between risk, responsibility, and rudeness by analysing the evolution of the main governmental slogans and rules and explore the complex relationship between simplicity, safety, and perceived fairness of these rules, and how these features in turn influence the extent to which we act responsibly. I begin by exploring the relationship between rudeness and risk in our interactions about coronavirus, before going on to analyse the importance of clear rules in minimizing tension between us, illustrating the argument with various slogans including “stay at home,” “stay alert,” and the now infamous “rule of six,” which is actually at least three different rules. Ultimately, we are faced with a paradox: people annoyed about complex/unfair rules are less likely to obey them, even if that means rules will apply for longer and even though it was noncompliance with earlier simpler rules that means new rules are necessary. And if rules make less or no sense it is harder to try to get people to follow them in your own capacity as a citizen; it is hard to police rules that are seen as arbitrary or unfair.
Gabrielle Samuel, Frederica Lucivero, Stephanie Johnson & Heilien Diedericks
Abstract In April 2020, close to the start of the first U.K. COVID-19 lockdown, the U.K. government announced the development of a COVID-19 contact tracing app, which was later trialled on the U.K. island, the Isle of Wight, in May/June 2020. United Kingdom surveys found general support for the development of such an app, which seemed strongly influenced by public trust. Institutions developing the app were called upon to fulfil the commitment to public trust by acting with trustworthiness. Such calls presuppose that public trust associated with the app can emerge if the conditions for trustworthiness are met and that public trust is simplistic, i.e., linearly the sum of each member of the publics’ individual – U.K. government trust relationship. Drawing on a synthesis of the trust literature and fifteen interviews with members of the public trialling the app on the Isle of Wight, this paper aims to explore what trust mechanisms and relationships are at play when thinking about public trust in the context of the U.K. COVID-19 app. We argue that public trust is a complex social phenomenon and not linearly correlated with institutional trustworthiness. As such, attention needs to widen from calls for trustworthy infrastructures as a way to build public trust, to a deeper understanding of those doing the trusting; in particular, what or whom do people place their trust in (or not) when considering whether using the app and why. An understanding of this will help when trying to secure public trust during the implementation of necessary public health measures.
Alberto Giubilini, Julian Savulescu & Dominic Wilkinson
Abstract We discuss whether and under what conditions people should be allowed to choose which COVID-19 vaccine to receive on the basis of personal ethical views. The problem arises primarily with regard to some religious groups’ concerns about the connection between certain COVID-19 vaccines and abortion. Vaccines currently approved in Western countries make use of foetal cell lines obtained from aborted foetuses either at the testing stage (Pfizer/BioNTech and Moderna vaccines) or at the development stage (Oxford/AstraZeneca vaccine). The Catholic Church’s position is that, if there are alternatives, Catholic people have a moral obligation to request the vaccine whose link with abortion is more remote, which at present means that they should refuse the Oxford/AstraZeneca vaccine. We argue that any consideration regarding free choice of the vaccine should apply to religious and non-religious claims alike, in order to avoid religion-based discrimination. However, we also argue that, in a context of limited availability, considering the significant differences in costs and effectiveness profile of the vaccines available, people should only be allowed to choose the preferred vaccine if: 1) this does not risk compromising vaccination strategies; and 2) they internalize any additional cost that their choice might entail. The State should only subsidize the vaccine that is more cost-effective for any demographic group from the point of view of public health strategies.
Yi Jiao (Angelina) Tian
Abstract The ever-debated question of triage and allocating the life-saving ventilator during the COVID-19 pandemic has been repeatedly raised and challenged within the ethical community after shortages propelled doctors before life and death decisions (Anderson-Shaw and Zar 2020; Huxtable 2020; Jongepier 2020; Peterson, Largent, and Karlawish 2020). The British Medical Association’s ethical guidance highlighted the possibility of an initial surge of patients that would outstrip the health system’s ability to deliver care “to existing standards,” where utilitarian measures have to be applied, and triage decisions need to maximize “overall benefit” (British Medical Association 2020, 3) In these emergency circumstances, triage that “grades according to their needs and the probable outcomes of intervention” will prioritize or eliminate patients for treatment, and health professionals may be faced with obligations to withhold or withdraw treatments to some patients in favour of others (British Medical Association 2020, 4). This piece is a response and extension to articles published on the manner of involvement for ethics and ethicists in pandemic triage decisions, particularly examining the ability and necessity of establishing triage committees to ameliorate scarce allocation decisions for physicians.
Marko Ćurković, Lovorka Brajković, Ana Jozepović, Dinko Tonković, Željko Župan, Nenad Karanović & Ana Borovečki
Abstract Healthcare professionals working in intensive care units (ICUs) are often involved in end-of-life decision-making. No research has been done so far about these processes taking place in Croatian ICUs. The aim of this study was to investigate the perceptions, experiences, and challenges healthcare professionals face when dealing with end-of-life decisions in ICUs in Croatia. A qualitative study was performed using professionally homogenous focus groups of ICU nurses and physicians (45 in total) of diverse professional and clinical backgrounds at three research sites (Zagreb, Rijeka, Split). In total, six institutions at the tertiary level of healthcare were included. The constant comparative analysis method was used in the analysis of the data. Differences were found between the perceptions and experiences of nurses and physicians in relation to end-of-life decisions. Nurses’ perceptions were more focused on the context and features of immediate care, while physicians’ perceptions also included the wider sociocultural context. However, the critical issues these specific professional groups face when dealing with end-of-life decisions seem to overlap. A high variability of practices, both between individual practitioners and between different organizational units, was omnipresent. The lack of adequate legal, professional, and clinical guidelines was commonly expressed as one of the most critical source of difficulties.
Hub Zwart
Abstract Emphasizing the importance of language is a key characteristic of philosophical reflection in general and of bioethics in particular. Rather than trying to eliminate the historicity and ambiguity of language, a continental approach to bioethics will make conscious use of it, for instance by closely studying the history of the key terms we employ in bioethical debates. Continental bioethics entails a focus on the historical vicissitudes of the key signifiers of the bioethical vocabulary, urging us to study the history of terms such as “bioethics,” “autonomy,” “privacy,” and “consensus.” Instead of trying to define such terms as clearly and unequivocally as possible, a continental approach rather requires us to take a step backwards, tracing the historical backdrop of the words currently in vogue. By comparing the original meanings of terms with their current meanings, and by considering important moments of transition in their history, obfuscated dimensions of meaning can be retrieved. Thus, notwithstanding a number of methodological challenges involved in etymological exercises, they may foster moral articulacy and enhance our ability to come to terms with moral dilemmas we are facing.
Kimbell Kornu
Abstract Elucidating a metaphysics of medicine is vital for framing a coherent medical ethics. In this paper, I examine the historical case of Avicenna, the eleventh century physician-philosopher. Avicenna radicalizes the dissective power of reason using a logicized Aristotelian metaphysics to clarify concepts at the metaphysical level, which I call his anatomy of being. One of the practical consequences of Avicenna’s metaphysics is a dehumanizing eschatology of death. I outline the main elements of Avicenna’s thought that constitute his anatomy of being. Through an examination of his logic, metaphysics, and psychology, I show how Avicenna develops a dissective logic. I conclude that one’s epistemology, as a method of knowing, entails a metaphysics, and, in turn, results in an ethical stance to the object of knowledge. For Avicenna, mental dissective logic applied to humans results in dehumanization, thereby destroying the humanistic impulse of medicine.
E. Turillazzi, A. Maiese, P. Frati, M. Scopetti & M. Di Paolo
Abstract In 2017, Italy passed a law that provides for a systematic discipline on informed consent, advance directives, and advance care planning. It ranges from decisions contextual to clinical necessity through the tool of consent/refusal to decisions anticipating future events through the tools of shared care planning and advance directives. Nothing is said in the law regarding the issue of physician assisted suicide. Following the DJ Fabo case, the Italian Constitutional Court declared the constitutional illegitimacy of article 580 of the criminal code in the part in which it does not exclude the punishment of those who facilitate the suicide when the decision has been freely and autonomously made by a person kept alive by life-support treatments and suffering from an irreversible pathology, the source of physical or psychological suffering that he/she considers intolerable, but fully capable of making free and conscious decisions. Such conditions and methods of execution must be verified by a public structure of the national health service, after consulting the territorially competent ethics committee. This statement admits, within strict and regulated bounds, physician assisted suicide, so widening the range of end-of-life decisions for Italian patients. Future application and critical topics will be called into question by the Italian legislator.
Nitzan Rimon-Zarfaty, Johanna Kostenzer, Lisa-Katharina Sismuth & Antoinette de Bont
Abstract Egg freezing has led to heated debates in healthcare policy and bioethics. A crucial issue in this context concerns the distinction between “medical” and “social” egg freezing (MEF and SEF)—contrasting objections to bio-medicalization with claims for oversimplification. Yet such categorization remains a criterion for regulation. This paper aims to explore the “regulatory boundary-work” around the “medical”–”social” distinction in different egg freezing regulations. Based on systematic documents’ analysis we present a cross-national comparison of the way the “medical”–”social” differentiation finds expression in regulatory frameworks in Austria, Germany, Israel, and the Netherlands. Findings are organized along two emerging themes: (1) the definition of MEF and its distinctiveness—highlighting regulatory differences in the clarity of the definition and in the medical indications used for creating it (less clear in Austria and Germany, detailed in Israel and the Netherlands); and (2) hierarchy of medical over social motivations reflected in usage and funding regulations. Blurred demarcation lines between “medical” and “social” are further discussed as representing a paradoxical inclusion of SEF while offering new insights into the complexity and normativity of this distinction. Finally, we draw conclusions for policymaking and the bioethical debate, also concerning the related cryopolitical aspects.
Image: @answer42 on freeimages