Medicine’s collision with false hope: The False Hope Harms (FHH) argument

The goal of this paper is to introduce the false hope harms (FHH) argument, as a new concept in healthcare. The FHH argument embodies a conglomerate of specific harms that have not convinced providers to stop endorsing false hope. In this paper, it is submitted that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine. Although hope serves important functions—it can be ‘therapeutic’ and important for patients’ ‘self-identity as active agents’— the presentation of false hope along the hope continuum entails a misconstrued balancing act. By not speaking up against unrealistic patient and family requests—including some requests for rights to try, resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments—healthcare providers precipitate harms, i.e., the FHH. These harms arise on both individual and communal levels and cannot be ignored. The goal of this paper is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. Instead, this paper seeks to make four points while outlining the FHH argument: consumer medicine and false hope are connected; providers and patients are very vulnerable in the system of consumer medicine; providers have a responsibility to stand up against false hope; and how the FHH argument could perhaps offer a footing to resist giving in to false hope.     

The physician's role in maintaining hope and spirituality

This paper examines several areas that health care providers may find difficult in the care of patients near the end of their lives. It looks at society's denial of death and at ways physicians and their patients use ongoing active treatments to maintain that denial. It suggests that as active treatment fails to be effective and hope fades, physicians must find ways to care for those they cannot cure. It explores the function of hope to help physicians, their patients, and their patients' families redirect their thinking. Finally, it describes how the physician may support a patient's spirituality by becoming more comfortable with his own.     

Hope against hope: changing emotions in the Burundian crisis

Through the lens of Burundians who have been displaced by the recent crisis in Burundi and their anticipations of possible futures for themselves and their country, expressed in the emotions of hope, anxiety, and despair, this article explores the shift from a situation characterized by upheaval towards the crystallization of authoritarian rule in Burundi. Drawing on ethnographic research amongst Burundian refugees in Rwanda, I examine how these individuals negotiate such uncertain and unpredictable circumstances as well as how emotions of hope, anxiety, and despair change accordingly. I argue that the political closure in Burundi has produced a gradual shift from productive anxiety in the Kierkegaardian sense towards despair and a feeling of existential closure. In such situations, when uncertainty gives way to a certainty that there are no futures, the present becomes detached from the flow of time and decisions become impossible to make. The Burundians in Rwanda can only live for the moment and hope against hope, often evoking a distinction between their hopelessness as human beings and the hope that they are compelled to have as Christians.     

Prosperous Pollutants: Bargaining with Risks and Forging Hopes in an Industrial Town in Eastern Serbia

ABSTRACT

The article explores the ‘work of hope’ in relation to air pollution and health hazards in Bor, a polluted copper-processing town in Eastern Serbia. The aim of this paper is to show the mutual imbrication of hope and risk by delineating how hope for a stable personal and communal future was anchored in the polluting company and the toxic substances it produced, which, in various ways, provided a sense of possibility and opportunity. I show how the work of hope demanded simultaneous weighing up, manoeuvring, accepting, and bargaining with risks that became an integral part of the work of hope in a social setting where the double bind of growth versus sustainability was deeply embedded. I argue that together, hope and risk were both framing devices for thinking about and living towards futures in a context of reindustrialisation and recent sudden economic flourishing in this post-socialist town.     

The balancing of virtues—Muslim perspectives on palliative and end of life care: Empirical research analysing the perspectives of service users and providers

In this paper, I will share findings from a qualitative study that offers a thematic analysis of 76 interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains and community faith leaders across the United Kingdom. The data show that for many Muslims, Islam—its texts and lived practice—is of central importance when they are deliberating about death and dying . Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around the virtues of hope and acceptance. The study provides an analysis of these themes in relation to the experiences of Muslim patients and families arriving at meaning making around death and dying and how this interfaces with their interaction with biomedicine and healthcare. The study shows that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim patients and families encounter the healthcare system. The study also describes how healthcare professionals and staff of other faiths and no faith encounter Muslim beliefs and practices, and the challenges they face in interpreting virtues and values rooted in faith, especially when these are perceived to be mutually opposed or inconsistent.     

Instilling hope and respecting patient autonomy: reconciling apparently conflicting duties

In contemporary American medical practice, certain physicians are critical and wary of the current emphasis on patient autonomy in medicine, questioning whether it really serves the complex needs of severely ill patients. Physicians such as Eric Cassell and Thomas Duffy argue that the duty of beneficence should override the duty to respect autonomy when conflicts arise in clinical situations. After evaluating their claim that severe illness robs patients of their autonomy, I will argue that this perceived conflict between beneficence and autonomy is ill-conceived, resting on misperceptions about both the capacity for autonomy and the meaning of hope. Considering insights on hope from phenomenologist Gabriel Marcel and theologian William Lynch, as well as drawing upon a case study involving a bone marrow patient, I claim that respecting and nurturing patients' capacity for autonomy is a necessary condition for acting beneficently and fostering authentic hope.     

Negotiating “The Social” and Managing Tuberculosis in Georgia

In this paper I utilize anthropological insights to illuminate how health professionals and patients navigate and negotiate what for them is social about tuberculosis in order to improve treatment outcomes and support patients as human beings. I draw on ethnographic research about the implementation of the DOTS (Directly Observed Therapy, Short Course) approach in Georgia’s National Tuberculosis Program in the wake of the Soviet healthcare system. Georgia is a particularly unique context for exploring these issues given the country’s rich history of medical professionalism and the insistence that the practice of medicine is a moral commitment to society. I argue for critical attention to the ways in which treatment recipients and providers navigate what, for them, is “social” about therapeutic practices and their significance for avoiding biological and social reductionism.     

Only one Mayweather: a critique of hope from the hopeful

Professional boxing offers hope of vast wealth and global mobility for aspiring athletes in Accra, hopes bolstered by the understanding that Ghanaians are particularly suited to boxing's attrition. However, when boxers become active in the global industry, they encounter power relations which locate them as cheap, subordinate labour, and stymie their championship hopes. As boxers build lives through the sport, they reflect critically on the role their hopes of ‘making it big’ play in perpetuating industry inequalities, recognizing what I call the ideological function of hope. Despite this, they remain committed to hopes of dramatic success. Their simultaneous optimism and cynicism complicates contemporary accounts of hope as a strategy of resilience in contexts of profound uncertainty. Building on ethnographic research with Accra boxers, I theorize hoping as a paradoxical experience of critique and optimism in equal measure, to account for the contradictory ways people act when orienting themselves towards better futures.     

Fostering hope in the clinical setting

Investigators agree that hope is an important coping skill for patients. Hope is stronger than optimism and influences one's physical well being. Suggestions and strategies that can be used in the clinical setting to increase hope begin with an admission of its important role.     

Constitutional Faith Law and Hope in Revolutionary Kyrgyzstan

This article investigates the interrelation between law and hope in the context of constitutional change in the Central Asian country of Kyrgyzstan. Drawing upon ethnographic and textual data, it is shown that the constitution has acquired particular discursive importance in Kyrgyzstan each time the foundations of the state have been severely challenged or shattered. Paying particular attention to three major political conflicts, the article demonstrates how, in the aftermath of each, speeches, performances, presentations and conversations were infused with ‘constitutional faith’, binding together the political elite and ordinary citizens in an expression of their general hope that constitutional change could bring about a better future. I view constitutional faith as a practice of hope that allows people to actively engage with their being-in-the-world, particularly in times of crisis. In the aftermath of large-scale political conflict, with which I am concerned here, it can become a faith-based mode of conflict resolution.     

The meaning of the present: hope and foreclosure in narrations about people with severe brain damage

In this article, I consider narratives told within a clinical setting. I argue that personnel in a day center for people with acquired brain damage are constantly involved in narrating about the disabled participants. The negotiation of who the participant is, and foremost will be, is in constant negotiation in regard to issues of hope. I further argue that hope is a meaning-making process and, as such, it has been defined as crucially connected to time. Hope has been said to enable a connection between the present and the future, because action taken in the present could bring about (positive) change in the future. However, I show that hope, in relation to narratives told about people with severe disabilities that are considered "incurable," must be understood within a realm of narrative foreclosure. Time seems to have lost the openness of its horizon for these people, and a narrative that tells of immediacy rather than chronology is created, resulting in hope being established within the present.     

Post-socialism and notions of context in St Petersburg

The anthropology of post-socialism has largely been framed around a suspension of judgement of the so-called 'transition to market capitalism'. In this article I explore this theme as an ethnographic question and ask how social context is marked locally. I argue that while suspending judgements about the nature of context is nearly impossible in a sustained fashion – marriages must be planned, universities attended, etc. – in many ways people have a practical disposition that does in fact resemble the anthropological hesitance to pass judgement. I argue that ways of imagining context have more to do with historically informed practices of personhood and 'pretence' than with crisis and chaos.     

The meaning of hope in health and illness

Hope plays an important role in the illness experience, yet it is a difficult concept to articulate, given its complex intangible nature. To develop a model for capturing the personal meaning of hope in health and illness, I developed a questionnaire and distributed it to 550 healthy adults, adults with illness experience, and nurses. Major findings from this study suggest that people experience hope within three interconnected realms: personal spirit, risk, and authentic caring. This multidimensional framework provides a novel approach for understanding the complex experience of hope in health and illness.     

Abortion, value and the sanctity of life

In Life's Dominion Dworkin argues that the debate about abortion is habitually misconstrued. Substantial areas of agreement are overlooked, while areas of disagreement are, mistakenly, seen as central. If we uncover a truer picture, then hope of a certain accord may no longer seem vain. I dispute many of these claims.
Dworkin argues that both sides in the debate are united in believing that life is sacred, or intrinsically valuable. I disagree. I maintain that only in a very attenuated sense of intrinsic value will this be agreed upon. I consider how an account of such value might be further fleshed out, but suggest, if this is done on any plausible lines, agreement will fall away. Dworkin argues, also, that the issue of personhood, does not, contrary to widespread belief, keep the parties apart. Again I disagree. We need to distinguish the question of whether there is in fact dispute over this issue from that of whether there is, in truth, good reason for dispute. And I argue that, rightly or wrongly, the issue of personhood remains central. Dworkin suggests that the purported proximity between the two sides offers some hope of an eventual reconciliation. At least, they will agree to differ, accepting that in this area freedom of choice is paramount. I am sceptical. Even this measure of reconciliation depends upon conservatives giving up positions which, I argue, they will continue to maintain.
There is a further point. Dworkin appears to be, in many ways, cautiously optimistic. I appear, in contrast, to be pessimistic. I argue, however, that only so long as we do disagree over matters of substance is there much hope that our differences might be resolved.     

Patients with multiple needs for healthcare and priority to the worse off

There is a growing body of literature which suggests that decisions about healthcare priority setting should take into account the extent to which patients are worse off. However, such decisions are often based on how badly off patients are with respect to the condition targeted by the treatment whose priority is under consideration (condition‐specific severity). In this paper I argue that giving priority to the worse off in terms of condition‐specific severity does not reflect the morally relevant sense of being worse off. I conclude that an account of giving priority to the worse off relevant for healthcare priority setting should take into account how badly off patients are when all of their conditions are considered (holistic severity).     

Conscientious Refusals and Reason‐Giving

Some philosophers have argued for what I call the reason‐giving requirement for conscientious refusal in reproductive healthcare. According to this requirement, healthcare practitioners who conscientiously object to administering standard forms of treatment must have arguments to back up their conscience, arguments that are purely public in character. I argue that such a requirement, though attractive in some ways, faces an overlooked epistemic problem: it is either too easy or too difficult to satisfy in standard cases. I close by briefly considering whether a version of the reason‐giving requirement can be salvaged despite this important difficulty.     

Evidence‐Based Medicine and Women: Do the Principles and Practice of EBM Further Women's Health?

Clinicians and policy makers the world over are embracing evidence-based medicine (EBM). The promise of EBM is to use summaries of research evidence to determine which healthcare interventions are effective and which are not, so that patients may benefit from effective interventions and be protected from useless or harmful ones. EBM provides an ostensibly rational objective means of deciding whether or not an intervention should be provided on the basis of its effectiveness, in theory leading to fair and effective healthcare for all. In this paper I closely examine these claims from the perspective of healthcare for women, using relevant examples. I argue that the current processes of evidence-based medicine contain a number of biases against women. These biases occur in the production of research that informs evidence-based medicine, in the methods used to analyse and synthesise the evidence, and in the application of EBM through the use of guidelines. Finally, the biomedical model of health that underpins most of the medical research used by EBM ignores the social and political context which contributes so much to the ill-health of women.     

Quantifying your body: A how-to guide from a systems biology perspective

During the coming decade we will see an accelerated digital transformation of healthcare. Leading this change within the institutional medical community are both the move to digital medical records and the use of digital biomedical measurement devices. In addition to this institutional evolution, there is a non-institutional, bottom-up, unorganized, highly idiosyncratic movement by early adopters to "quantify" their own bodies. In this article, I share my decade-long personal experience of tracking many blood and stool biomarkers, which provide insight into the health or disease of major subsystems of my body. These results are interpreted in the context of the genetics of my human DNA and that of the microbes in my gut. Even though I am a computer scientist and not a medical professional, by using commercially available tests and a systems biology integrative approach, I have become an early example of Leroy Hood's vision of the emergence of predictive, preventive, personalized, and participatory (P4) medicine. It is an individual's story illustrating how each of us can contribute to realizing this paradigm shift.     

Shifting to structures in physics and biology: a prophylactic for promiscuous realism

Within the philosophy of science, the realism debate has been revitalised by the development of forms of structural realism. These urge a shift in focus from the object oriented ontologies that come and go through the history of science to the structures that remain through theory change. Such views have typically been elaborated in the context of theories of physics and are motivated by, first of all, the presence within such theories of mathematical equations that allow straightforward representation of the relevant structures; and secondly, the implications of such theories for the individuality and identity of putative objects. My aim in this paper is to explore the possibility of extending such views to biological theories. An obvious concern is that within the context of the latter it is typically insisted that we cannot find the kinds of highly mathematised structures that structural realism can point to in physics. I shall indicate how the model-theoretic approach to theories might help allay such concerns. Furthermore, issues of identity and individuality also arise within biology. Thus Dupré has recently noted that there exists a 'General Problem of Biological Individuality' which relates to the issue of how one divides 'massively integrated and interconnected' systems into discrete components. In response Dupré advocates a form of 'Promiscuous Realism' that holds, for example, that there is no unique way of dividing the phylogenetic tree into kinds. Instead I shall urge serious consideration of those aspects of the work of Dupré and others that lean towards a structuralist interpretation. By doing so I hope to suggest possible ways in which a structuralist stance might be extended to biology.