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: 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; 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 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 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. (shrink)

High-dose chemotherapy and autologous stem cell transplantation 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 informationPatients 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. (shrink)

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. (shrink)

This paper addresses the growing problem of retractions in the scientific literature of publications that contain bad data, also called “false science.” While the problem is particularly acute in the biomedical literature because of the life-threatening implications when treatment recommendations and decisions are based on false science, it is relevant for any knowledge domain, including the social sciences, law, and education. Yet current practices for handling retractions are seen as inadequate. We use the metaphor of a virus to illustrate how (...) such studies can spread and contaminate the knowledge system, when they continue to be treated as valid. We suggest drawing from public health models designed to prevent the spread of biological viruses and compare the strengths and weaknesses of the current governance model of professional self-regulation with a proposed public health governance model. The paper concludes by considering the value of adding a triple-helix model that brings industry into the university-state governance mechanisms and incorporates bibliometric capabilities needed for a holistic treatment of the retraction process. (shrink)

We examine the link between the growing emphasis on corporate social responsibility at the organizational level and beliefs about social responsibility at work (SRW) expressed by individuals. Drawing from theories of professionalism and diffusion of innovations (including practices and beliefs), we advance hypotheses about beliefs of managers and non-managers in 11 countries at two time periods, and use a unique international data set to test our hypotheses. Our general prediction that managers would score higher than non-managers on a measure of (...) SRW was not supported. However, further analysis revealed a more complex relationship moderated by the contextual factors of time frame and country inequality level. We discuss implications and extensions for future research. (shrink)

We examine the link between the growing emphasis on corporate social responsibility at the organizational level and beliefs about social responsibility at work (SRW) expressed by individuals. Drawing from theories of professionalism and diffusion of innovations (including practices and beliefs), we advance hypotheses about beliefs of managers and non‐managers in 11 countries at two time periods, and use a unique international data set to test our hypotheses. Our general prediction that managers would score higher than non‐managers on a measure of (...) SRW was not supported. However, further analysis revealed a more complex relationship moderated by the contextual factors of time frame and country inequality level. We discuss implications and extensions for future research. (shrink)

The pharmaceutical industry has been criticised for pervasive misconduct. These concerns have generally resulted in increasing regulation. While such regulation is no doubt necessary, it tends to assume that everyone working for pharmaceutical companies is equally motivated by commerce, without much understanding of the specific views and experiences of those who work in different parts of the industry. In order to gain a more nuanced picture of the work that goes on in the “medical affairs” departments of pharmaceutical companies, we (...) conducted 15 semi-structured interviews with professionals working in medical departments of companies in Sydney, Australia. We show that this group of pharmaceutical professionals are committed to their responsibilities both to patients, research participants, and the public and to their companies. Despite the discrepancies between these commitments, our participants did not express much cognitive dissonance, and this appeared to stem from their use of two dialectically related strategies, one of which embraces commerce and the other of which resists the commercial imperative. We interpret these findings through the lens of institutional theory and consider their implications for pharmaceutical ethics and governance. (shrink)

Medical Professionals: Conflicts and Quandaries in Medical Practice offers a fresh approach to understanding the role-related conflicts and quandaries that pervade contemporary medical practice. While a focus on professional conflicts is not new in the literature, what is missing is a volume that delves into medical professionals' own experience of the conflicts and quandaries they face, often as a result of inhabiting multiple roles. The volume explores the ways in which these conflicts and quandaries are exacerbated by broader societal forces, (...) including changing scientific and technological paradigms, commercialization, and strengthened consumer movements, which simultaneously expand the scope of roles and responsibilities that medical professionals are expected to fulfill, and make it more difficult to do so. Several empirical chapters analyze data from qualitative interview studies with clinicians and other stakeholders. The studies highlight the burdens on clinicians who are expected to make informed and justified judgments and decisions in the midst of competing pressures; authors describe the methods that clinicians use to address the associated tensions within specific contexts. Two conceptual chapters follow and offer some innovative ways to think about the challenges facing medical professionals as they strive to make sense of the changing landscape within healthcare. The first reflects on the challenges to clinical practice in the midst of shifting and often competing definitions of disease and associated ideologies of care. The second reflects more broadly on the utility of value pluralism as a framework for conceptualizing and working through moral and professional quandaries. The book concludes with a chapter containing suggestions for how members of the medical profession might reframe their thinking about their roles, responsibilities, and decision-making in the midst of inevitable quandaries such as those presented here. This book will be of vital reading for academics, researchers, educators, postgraduate students, and interested health care practitioners and administrators. (shrink)

Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation is largely implicit, (...) however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness. (shrink)