Symposium: The Legacy of Miles Little

Symposium: The Legacy of Miles Little

Journal of Bioethical Inquiry, Volume 19, Issue 1, 2022

Guest Editors: Claire Hooker, Ian Kerridge, Wendy Lipworth, and Kathryn MacKay

The full texts of all the symposium articles are available to read using the links below**.

Editorial : Liminality: The Not-So-New Normal?, Free Access, Michael Ashby Extract

This edition of the Journal of Bioethical Inquiry carries a symposium compiled in honour of the work of a distinguished pioneer of Australian bioethics: Miles Little. As the symposium shows, Little started to work on methods and subjects that seem obvious to us now (the patient experience, the sociology and anthropology of health issues) but this was certainly not fashionable or widely accepted in the 1970s when he started these explorations, especially here in Australia.

One of the central concepts that his work badged and explored is that of liminality: a sort of unstable state between states of relatively greater certainly, being perhaps best seen as the interval (for non-sudden deaths) between “normal” life, due, for example, to a cancer diagnosis, and death. Normal in the sense of an “illusion” of settlement, where finitude is managed by aversion of the gaze as a result of good health, together with varying degrees of financial, social, and emotional security. Security but not necessarily safety, as we can never be completely safe, risks surround us every step of the way. But the relatively low risks throughout long western lives generate an emotional state of provisional reality that makes it very hard when there is a real threat of death.

Lead essay: A Discursive Exploration of Values and Ethics in Medicine: The Scholarship of Miles Little, Free Access, Claire Hooker, Ian Kerridge, Wendy Lipworth, and Kathryn MacKay Extract

John Miles Little, b. 1932, is a surgeon, philosopher, and poet, whose scholarship has been central to the beginnings and growth of bioethics and the medical humanities in Australia. As the commentaries by scholars in this volume demonstrate, his scholarship continues to influence and stimulate thinking in these fields. …

Introducing the Symposium
This symposium seeks to do two things. The first is to introduce and to re-acquaint academics, researchers, and students in bioethics with the work of Miles Little. It is our view that his work is salient not just to the issues bioethics concerns itself with but also, and perhaps more importantly, to the way that bioethics can be done. The second goal is to identify and honour Miles Little’s contributions to bioethics and the medical humanities. To achieve this, we have republished five of Little’s papers (selected by Little himself, who was asked to nominate his “favourites”) along with new commentaries on each of these papers. The idea behind this structure was not simply to provide contemporary reflections on contributions but to replicate, in some small way, the kind of dialogue that Little established at VELiM and that he and we continue to value so highly; to open up new conversations. The observations of Little’s work offered up in these commentaries are not, therefore, uncritical or sycophantic but reflect new ideas and new thought fomented by Little’s original offerings.

Vascular Amputees: A Study in Disappointment, J. M. Little, Dora Petritsi-Jones, Charles Kerr Summary

Despite optimistic reports about the results of amputation for advanced vascular disease, the patient’s assessment of advantages and disadvantages is seldom acknowledged. A detailed social study of 67 amputees has revealed considerable disparity between the patient’s views and those of the medical staff. About a third of the patients are forced to retire from active work by the amputation; about three-quarters report a serious decline in their social activities; only about half are really independent with prostheses in the long term; a quarter report severe and intractable symptoms related to their amputation stumps; only about a quarter feel that the amputation was definitely beneficial; and only about one in five feel that the medical staff have provided adequate support during their hospital stay. Amputees face physical and financial disability, isolation, and discomfort. Every effort must be made to explain the implications of amputation honestly and realistically and to ensure continuing patient assessment and support.

Response—Forty-Seven Years Later: Further Studies in Disappointment?, Michael Loughlin Abstract

This paper provides a commentary on “Vascular amputees: A study in disappointment” (Little et al. 1974) and its significance in the development of the disability rights movement, as well as the movements for values-based medicine and person-centred health and social care.

Response—The Road Less Travelled: Why did Miles Little Turn to Qualitative Research and Where Did This Lead?, Christopher F.C. Jordens Abstract

Miles Little is an Australian surgeon, poet, and philosopher whose published work spans diverse topics in surgery, medicine, philosophy, and bioethics. In 1974 he co-authored a survey that included an analysis of interviews conducted with amputees. This was his first foray into qualitative research. Twenty years later he established a research centre at the University of Sydney that initiated a programme of qualitative research in cancer medicine. For twenty years after that, the centre acted as a hub for research that applied qualitative methods from the social sciences to study the experiences of people who endure illness and onerous treatments and to reveal their evaluations of what medicine does to and for them. This essay explains why Little turned to qualitative research instead of pursuing two other research paradigms that were better established in the 1990s, namely, evidence-based medicine and quality-of-life research. It also notes a development in qualitative research methods that Little’s legacy helps to explain, one which can augment the symbolic power of socially marginalized individuals and groups. With reference to a current controversy in surgery, I argue that Little’s survey of amputees models a laudable response to criticism, and in this respect, it is still relevant today.

Liminality: A major category of the experience of cancer illness, Miles Little, Christopher F. C. Jordens, Kim Paul, Kathleen Montgomery & Bertil Philipson Abstract

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer (and other serious illnesses) seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments.

Response—A Commentary on Miles Little et al. 1998. Liminality: A major category of the experience of cancer illness, Jackie Leach Scully Abstract

This paper by Miles Little and colleagues identified the state they described as “liminal” within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched and challenged its use as a conceptual tool.

Response—Liminality and the Mirage of Settlement, Open Access, Claire Hooker, Ian Kerridge Abstract

Little and colleagues’ (1998) paper describing a key aspect of cancer patients’ experience, that of “liminality,” is remarkable for giving articulation to a very common and yet mostly overlooked aspect of patient experience. Little et. al. offered a formulation of liminality that deliberately set aside the concept’s more common use in analysing social rituals, in order to grasp at the interior experience that arises when failing bodily function and awareness of mortality are forced into someone’s consciousness, as occurs with a diagnosis of cancer. We set out the reasons as to why this analysis was so significant in 1998—but we also consider how the “liminality” described by Little and colleagues was (as they suggested) a feature of modernity, founded on what we term “the mirage of settlement.” We argue that this mirage is impossible to sustain in 2022 amid the many forms of un-settling that have characterized late modernity, including climate change and COVID-19. We argue that many people in developed nations now experience liminality as a result of the being forced into the consciousness of living in a continued state of coloniality. We thus rejoin the social aspects of liminality to the interior, Existential form described by Little et. al.

Discourse Communities and the Discourse of Experience
Miles Little, Christopher F. C. Jordens, Emma-Jane Sayers Abstract

Discourse communities are groups of people who share common ideologies, and common ways of speaking about things. They can be sharply or loosely defined. We are each members of multiple discourse communities. Discourse can colonize the members of discourse communities, taking over domains of thought by means of ideology. The development of new discourse communities can serve positive ends, but discourse communities create risks as well. In our own work on the narratives of people with interests in health care, for example, we find that patients speak of their illness experiences as victims of circumstance; policy makers construct adverse experiences and challenges as opportunities to be taken; health care workers speak from a mixed perspective, seeing themselves as both victims and opportunists depending on context. To be trapped within the discourse of a particular community is to put at risk the ability to communicate across discourses. Membership of a discourse community can impair the habit of critique, and deny opportunities for heteroglossic discourse. Privileging critique as a mode of discourse perhaps might define the ethical community, suggesting that ethical community may be an antidote to the constraining effects of conventional discourse community.

Response—A Critical Response to “Discourse Communities and the Discourse of Experience”, Open Access, Paul Macneill Abstract

In their article Little, Jordens, and Sayers developed the notion of “discourse communities”—as groups of people who share an ideology and common “language”—with the support of seminal ideas from M.M. Bakhtin. Such communities provide benefits although they may also impose constraints. An ethical community would open to others’ discourse and be committed to critique. Those commitments may counter the limitations of discourse communities. Since their paper was published in 2003, the notion of “discourse communities” has been widely adopted and applied in healthcare and beyond. Their ideas were influential in the founding of an ethics centre in Sydney and contributed to articulating the values which underpin this journal. This commentary notes that an ethical community is fragile in responding to current onslaughts on truth and meaning—potencies inherent in discourse communities. The essay takes Bakhtin’s ideas further to explore intrinsic forces at play in dialogue, language, and art. This leads to discussing the centrality of ethics in Bakhtin’s thought. For him, the essence of discourse is a dialogic exchange which comprises both art and ethics. It is art in that self and other are created in the exchange. It is ethical in that “I” am answerable to the other, as a phenomenological reality, in the moment of intersubjectivity.

Response—Belonging, Interdisciplinarity, and Fragmentation: On the Conditions for a Bioethical Discourse Community, Christopher Mayes Abstract

I have been invited to reflect on “Discourse communities and the discourses of experience” a paper co-authored by Little, Jordens, and Sayers and discuss how their analysis of discourse communities has influenced the development of bioethics and consider its influence now and potential effects in the future. Their paper examines the way different discourse communities are shaped by different experiences and desires. The shared language and experiences can provide a sense of belonging and familiarity. These can be positive aspects of a discourse community, but there are also risks restricting the voices and experiences that can be heard and recognized. In this essay I hope to weave together three threads: an analysis of Little, Jordens, and Sayer’s research on discourse communities; the narrative interview I conducted with Little about his own experiences in establishing a bioethics centre; and my own experience of the bioethical discourse community established by Little.

Pragmatic pluralism: Mutual tolerance of contested understandings between orthodox and alternative practitioners in autologous stem cell transplantation, Miles Little, Christopher F. C. Jordens, Catherine McGrath, Kathleen Montgomery, Ian Kerridge & Stacy M. Carter Abstract

High-dose chemotherapy and autologous stem cell transplantation (ASCT) is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences. Some seek information from beyond orthodox medicine. Alternative beliefs and practices may conflict with conventional understanding of the theory and practice of ASCT, and ‘contested understandings’ might interfere with patient adherence to the strict and demanding protocols required for successful ASCT.
The present study, conducted in Sydney, Australia, examines narrative-style interviews with 10 sequentially recruited ASCT patients and nine of their carers conducted at the time of transplant and three months later. Transcripts were read for instances of mention of alternative advice, and for instances of contested understanding of information relevant to the transplant.
Patients and carer pairs expressed closely concordant views about alternative advice. Five pairs were consulting alternative practitioners. Contested understanding was expressed in four domains—understandings of the transplant itself and its underlying theory, of the relationship between the components of the ‘transplant’, of the nature and role of stem cells, and of beliefs about bodily function and life-style. Contested understandings of the transplant treatment were expressed as predominantly personal interpretations of orthodox information
Patients and carers seemed to recognise that alternative and conventional systems were discordant, yet they were able to separate the two, and adhere to each practice without prejudicing their medical treatment. A single case of late, post-transplant repudiation of Western medicine is discussed to emphasise some of the possible determinants of dissonance when it does occur.

Response—The Multiple Understandings in the Clinic Do Not Always Need to be Resolved, Paul A. Komesaroff Abstract

This article reflects on the assumption underlying the argument of Little et al. that “contested understandings” in the clinic are susceptible to reconciliation within a liberal framework described as “pragmatic pluralism”. It is argued that no such reconciliation is possible or desirable because it is of the nature of the clinic that it provides a forum for multiple voices, ethical and cultural perspectives, and conceptual frameworks, and this is the source of its fecundity and creativity. Medicine itself cannot be represented by a single discourse, precisely because it is itself an unruly collection of practices that, despite their heterogeneity, are able to engage in productive dialogues with each other. The heteroglossia of the clinic, therefore, is not a problem to be overcome. Rather, it is a rich resource to be mobilized in accordance with its multiple inherent purposes.

Response—An Extreme Ordeal: Writing Emotion in Qualitative Research, Siun Gallagher Abstract

Responding to the stimulus afforded by Little et al.’s “Pragmatic pluralism: Mutual tolerance of contested understandings between orthodox and alternative practitioners in autologous stem cell transplantation,” this paper explores how the norms of qualitative inquiry affect the representation of emotion in research reports. It describes a conflict between the construction of emotion in qualitative research accounts and its application to analysis and theorization, whose origins may lie in researchers’ reticence when it comes to conveying or using the emotional features of data. The technical aspects of report writing that are associated with this conflict are explored via a deconstruction of Little et al.’s paper and a survey of the qualitative research methods literature. Writing to convey emotion and analysing to include author-constructed emotional context are neglected topics. Using data in Little et al.’s text, the paper demonstrates the importance of author-constructed emotional context to theory generation. The paper recommends the inclusion of emotional context as data in analysis and points to lessons Little et al.’s paper offers in the areas of narrative technique and reflexive practice.

An Archeology of Corruption in Medicine, Miles Little, Wendy Lipworth & Ian Kerridge Abstract

Corruption is a word used loosely to describe many kinds of action that people find distasteful. We prefer to reserve it for the intentional misuse of the good offices of an established social entity for private benefit, posing as fair trading. The currency of corruption is not always material or financial. Moral corruption is all too familiar within churches and other ostensibly beneficent institutions, and it happens within medicine and the pharmaceutical industries. Corrupt behavior reduces trust, costs money, causes injustice, and arouses anger. Yet it persists, despite all efforts since the beginnings of societies. People who act corruptly may lack conscience and empathy in the same way as those with some personality disorders. Finding ways to prevent corruption from contaminating beneficent organizations is therefore likely to be frustratingly difficult. Transparency and accountability may go some way, but the determined corruptor is unlikely to feel constrained by moral and reporting requirements of this kind. Punishment and redress are complicated issues, unlikely to satisfy victims and society at large. Both perhaps should deal in the same currency—material or social—in which the corrupt dealing took place.

Response—The Corruption of Character in Medicine, Carl Elliott Abstract

Some people change dramatically over time, and often those changes result partly from what they have chosen to do for a living. Drawing on the work of Richard Sennett and Sandeep Jauhar, I explore how practicing in a market-driven medical system can corrupt the character of doctors.

Rules and Resistance: A Commentary on “An Archeology of Corruption in Medicine”, Kathryn MacKay Abstract

In the paper “An archeology of corruption in medicine” (2018), Miles Little, Wendy Lipworth, and Ian Kerridge (“the authors” or “Little et al.”) present an account of corruption and describe its prevalent forms in medicine. In presenting an individual-focused account of corruption found within “social entities” (organizations, institutions, and systems), Little et al. argue that these entities are corruptible by nature and that certain individuals are prone to take advantage of the corruptibility of social entities to pursue their own ends. The authors state that this is not preventable, so the way to remedy corruption is via management and, where necessary, punishment. This commentary will briefly lay out the key features and functions of corruption as presented by Little et al., before providing a critical discussion that will focus on whether corruptibility is a necessary feature of social entities. I will propose that it is not a necessary feature, though it may frequently arise where individualistic values are unchecked. Corruption can be prevented within social entities by enhancing structures that direct toward virtue and which promote and reward cooperation instead of competition.

Response—Corruption, Trust, and Professional Regulation, Open Access, Kathleen Montgomery Abstract

In their 2018 article in the Cambridge Quarterly of Healthcare Ethics, Little, Lipworth, and Kerridge unpack the concept of corruption and clarify the mechanisms that foster corruption and allow it to persist, noting that organizations are “corruptogenic.” To address the “so-what” question, I draw on research about trust and trustworthiness, emphasizing that a person’s well-being and sense of security require trust to be present at both the individual and organizational levels—which is not possible in an environment where corruption and misconduct prevail. I highlight similarities in Little et al.’s framing of corruption to the persistent problem of scientific misconduct in research and publishing. I acknowledge the challenges in stemming corruption in science and medicine and conclude with a discussion about the need to reinvigorate a web of stakeholders to actively engage in professional regulation.

The Legacy of Miles Little symposium appears in the 19(1) issue of the Journal of Bioethical Inquiry, the full details of which can be viewed here.

**Some symposium papers are Open Access or Free Access, giving readers the ability to read and/or download and print. Others are available to read-only under “SharedIt” publishing options.


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