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)

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. (shrink)

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. (shrink)

The pharmaceutical industry plays an increasingly dominant role in healthcare, raising concerns about “conflicts of interest” on the part of the medical professionals who interact with the industry. However, there is considerable disagreement over the extent to which COI is a problem and how it should be managed. Participants in debates about COI have become entrenched in their views, which is both unproductive and deeply confusing for the majority of medical professionals trying to work in an increasingly commercialized environment. We (...) used a modified meta-narrative review method to analyse debates about COI in the academic and grey literature. We found two Discourse Models: The Critical Discourse Model sees COI in health and biomedicine as a major problem that both can and should be addressed, while the Defensive Discourse Model argues that current efforts to control COIs are at best unnecessary and at worst harmful. Each model is underpinned by profoundly differing views about how society should be organized—in particular whether market forces should be encouraged or curtailed—and how the dangers associated with market forces should be managed. In order to make any headway, academics and policymakers must recognize that these debates are underpinned by profoundly differing worldviews. (shrink)

The debate about whether misoprostol should be distributed to low resource communities to prevent post-partum haemorrhage, recognised as a major cause of maternal mortality, is deeply polarised. This is in spite of stakeholders having access to the same evidence about the risks and benefits of misoprostol. To understand the disagreement, we conducted a qualitative analysis of the values underpinning debates surrounding community distribution of misoprostol. We found that different moral priorities, epistemic values, and attitudes towards uncertainty were the main factors (...) sustaining the debate. With this understanding, we present a model for ethical discourse that might overcome the current impasse. (shrink)

There seem to be some misunderstandings abroad in the literature about medical epistemology and person-centered medicine concerning the nature of 'modest' or aetiological foundationalism, and some vagueness about 'emergence'. This paper urges a greater tolerance for a modest, Humean variety of foundationalism, not least because it seems to offer significant support for person-centred medicine. It also suggests a closer examination of emergence as an explanation or justification for medicine, since emergence is a complex concept that does nothing to rule out (...) foundationalism. Foundationalism has been condemned tout court without recognizing that it comes in various styles and degrees. Emergence has been used as a property of medicine to dismiss any need to seek its foundations. But emergence too comes in different forms, not all of them at odds with modest foundationalism. Modest or aetiological foundationalism is far more flexible than Cartesian foundationalism, and is compatible with modern understandings of emergence. Modest foundationalism and a particular understanding of emergence support the ontological and epistemological underpinning of person-centered medicine. (shrink)

Rationale, aims and objectives: Bioethics and professionalism are standard subjects in medical training programmes, and these curricula reflect particular representations of meaning and practice. It is important that these curricula cohere with the actual concerns of practicing clinicians so that students are prepared for real-world practice. We aimed to identify ethical and professional concerns that do not appear to be adequately addressed in standard curricula by comparing ethics curricula with themes that emerged from a qualitative study of medical practitioners. Method: (...) Curriculum analysis: Thirty-two prominent ethics and professionalism curricula were identified through a database search and were analysed thematically. Qualitative study: In-depth, semi-structured interviews were conducted with 20 medical practitioners. Participants were invited to reflect upon their perceptions of the ways in which values matter in their practices and their educational experiences. The themes emerging from the two studies were compared and contrasted. Results: While representations of meaning and value in ethics and professionalism curricula overlap with the preoccupations of practicing clinicians, there are significant aspects of ‘real-world’ clinical practice that are largely ignored. These fell into two broad domains: ‘sociological’ concerns about enculturation, bureaucracy, intra-professional relationships, and public perceptions of medicine; and epistemic concerns about making good decisions, balancing different kinds of knowledge, and practising within the bounds of professional protocols. Conclusions: Our findings support the view that philosophy and sociology should be included in medical school and specialty training curricula. Curricula should be reframed to introduce students to habits of thought that recognize the need for critical reflection on the social processes in which they are embedded, and on the philosophical assumptions that underpin their practice. (shrink)

Dementia progressively isolates sufferers from their loved ones, who continue to search for meanings in their actions and words. As the condition progresses, meaning becomes harder and harder to find. Yet the actions of the sufferer may contain patterns, hinting at meanings that tempt observers to interpret from their own standpoint. We report the patterns repeated by a sufferer from Alzheimer's disease, artistic arrangements that take time to make, and appeal to observers. To the sufferer, these arrangements seem to have (...) no value beyond the fact of their creation. We wonder how far we can go as observers in imposing interpretations on these patterns of activity, which seem beautiful and poignant to us, but are evanescent and unremarked by their creator. (shrink)

Surgical ethics have generally been framed as general medical ethics applied to surgical contexts. This model is helpful, but may miss some of the special features of the surgical process and relationship. It is suggested in this paper that there are five categories of experience and relationship which are especially important in surgery —rescue, proximity, ordeal, aftermath and presence. The sense of rescue, the feeling of relational proximity, the ordeal and the aftermath of surgery are things which the patient experiences. (...) Understanding these experiences allow surgeons to understand what may be asked of them in an ethical sense. Recognition of the reality and validity of each category in the surgical process highlights the importance of presence, the acts by which the surgeon demonstrates that he is present to the patient throughout the surgical process and its aftermath. While the teaching of communication skills may never compensate for insensitivity, the ideal of presence as virtue and duty can be taught by precept and example. (shrink)

The ethical problems surrounding voluntary assisted suicide remain formidable, and are unlikely to be resolved in pluralist societies. An examination of historical attitudes to suicide suggests that modernity has inherited a formidable complex of religious and moral attitudes to suicide, whether assisted or not. Advocates usually invoke the ending of intolerable suffering as one justification for euthanasia of this kind. This does not provide an adequate justification by itself, because there are (at least theoretically) methods which would relieve suffering without (...) causing the physical death of the suffering person. Carried to extremes, these methods would finish the life worth living, but leave a being which was technically alive. Such acts, however, would provide no moral escape, since they would create beings without meaning. Arguments seeking to justify ending the lives of others need some grounding in concepts of the meaning of a life. The euthanasia discourse therefore needs to take at least some account of the meaning we construct for our lives and the lives of others. (shrink)

Cancer is a major burden on populations and health systems internationally. The development of innovative cancer medicines is seen as a significant part of the solution. These new cancer medicines are, however, expensive, leading to limited or delayed access and disagreements among stakeholders about which medicines to fund. There is no obvious resolution to these disagreements, with stakeholders holding firmly to divergent positions. Access to cancer medicines was recently explored in Australia in a Senate Inquiry into the Availability of New, (...) Innovative, and Specialist Cancer Drugs in Australia. We analysed the resultant Senate Report to identify competing stakeholder values. Our analysis illustrates that there are four main “goods” prioritized by different stakeholders: 1) innovation, 2) compassion, 3) equity, and 4) sustainability. We observe that, with the exception of sustainability, all of these “goods” put pressure on payers to provide access to cancer medicines more quickly and based on less rigorous evaluation processes. We then explore the consequences of giving in to such pressure and suggest that deconstructing the implicit values in calls for “enhanced access” to cancer medicines is necessary so that more nuanced solutions to the challenge of providing access to these high cost medicines can be found. (shrink)

Informed consent to medical procedures tends to be construed in terms of principle-based ethics and one or other form of expected utility theory. These constructions leave problems created by imperfect communication; subjective distress and other emotions; imperfect knowledge and incomplete understanding; complexity, and previous experience or the lack of it. There is evidence that people giving consent to therapy or to research participation act intuitively and assess consequences holistically, being influenced more by the magnitude of outcomes than their probability. People (...) avoid decisions they may regret, but modern regret theory has received little attention in discussions of informed consent. This essay suggests ways in which regret may be acknowledged in the consent process and in the assessment of the information that is an intrinsic part of it. (shrink)

In this analysis of the ethical dimensions of doctors’ participation in macroallocation we set out to understand the skills they use, how they are acquired, and how they influence performance of the role. Using the principles of grounded moral analysis, we conducted a semi-structured interview study with Australian doctors engaged in macroallocation. We found that they performed expertise as argument, bringing together phronetic and rhetorical skills founded on communication, strategic thinking, finance, and health data. They had made significant, purposeful efforts (...) to gain skills for the role. Our findings challenge common assumptions about doctors’ preferences in argumentation, and reveal an unexpected commitment to practical reason. Using the ethics of Paul Ricoeur in our analysis enabled us to identify the moral meaning of doctors’ skills and learning. We concluded that Ricoeur’s ethics offers an empirically grounded matrix for ethical analysis of the doctor’s role in macroallocation that may help to establish norms for procedure. (shrink)

While ethics and evidence‐based medicine are often viewed as separate domains of inquiry and practice, what we know influences what we can ethically justify doing, and what we see as our moral obligations shapes the way we interpret evidence. The boundaries between the moral and epistemic spheres become particularly blurred when the health of people is at stake and even more so when no “officially” recommended medical intervention is available to help a patient in need. The treatment of major hemorrhages (...) using recombinant factor VIIa (rFVIIa), which was originally approved under orphan drug legislation to treat hemophilia, is a case in point.Following reports in the late 1990s that rFVIIa was success­fully used to stop bleeding in gunshot trauma, there was much excitement about its potential to help patients with uncontrolled bleeding in other clinical settings, leading to wide‐spread off‐label use of the drug. In recent years, new evidence has raised questions about the off‐label use of rFVIIa for severe bleeding. Nonetheless, while some clini­cians are now adamantly opposed to prescribing rFVIIa for massive bleed­ing, many remain determined to continue the practice. This raises the question: why do clinicians have such variable responses to the same body of evidence?We analyzed the debate around off‐label use of rFVIIa and character­ized its main conceptual features and tensions. We did not seek to provide a normative analysis as to whether the evidence supports the case for off‐label prescribing, nor did we try to provide a historical analysis of how attitudes and clinical practice have changed. Rather, we sought to make visible the moral and epistemic values underpinning stakeholders’ opinions and practices. On the basis of our analysis, which is described in this ar­ticle, we suggest that debates such as those surrounding rFVIIa will not be resolved simply by conducting more studies and that, therefore, there is also a need for conceptual and pro­cedural frameworks that more sys­tematically incorporate values into clinical policy‐making. (shrink)

Background: The pharmaceutical industry has been responsible for major medical advances, but the industry has also been heavily criticized. Such criticisms, and associated regulatory responses, are no doubt often warranted, but do not provide a framework for those who wish to reason systematically about the moral dimensions of drug development. We set out to develop such a framework using Beauchamp and Childress's “four principles” as organizing categories. Methods: We conducted a qualitative interview study of people working in the “medical affairs” (...) departments of pharmaceutical companies to determine: (1) whether our data could meaningfully be organized under the headings of “autonomy,” “beneficence,” “nonmaleficence,” and “justice”; (2) how principles might be expressed in this particular commercial setting; and (3) if these principles are expressed, whether and how competing principles are balanced. We then critiqued these findings using existing normative theory. Results: Our interviews demonstrated that three of Beauchamp and Childress's four principles were salient to our participants: beneficence, nonmaleficence, and justice. Within each of these principles, participants had two broad ethical orientations: an altruistic public focus (“other-ness”) and a commitment to their companies (“firm-ness”). Our participants also demonstrated efforts to balance these principles and highlighted the importance of phronesis (or practical wisdom) in balancing and enacting principles. Notably, however, our participants did not spontaneously emphasize the importance of autonomy. Conclusions: It is possible to use qualitative empirical research, together with normative analysis, to derive a framework for pharmaceutical ethics. We suggest that our framework would be useful for those who wish to reason ethically within, or in collaboration with, the pharmaceutical industry. (shrink)

In most socialised health systems there are formal processes that manage resource scarcity and determine the allocation of funds to health services in accordance with their priority. In this analysis, part of a larger qualitative study examining the ethical issues entailed in doctors’ participation as technical experts in priority setting, we describe the values and ethical commitments of doctors who engage in priority setting and make an empirically derived contribution towards the identification of an ethical framework for doctors’ macroallocation work. (...) We conducted semi-structured interviews with 20 doctors, each of whom participated in macroallocation at one or more levels of the Australian health system. Our sampling, data-collection, and analysis strategies were closely modelled on grounded moral analysis, an iterative empirical bioethics methodology that employs contemporaneous interchange between the ethical and empirical to support normative claims grounded in practice. The values held in common by the doctors in our sample related to the domains of personal ethics, justice, and practices of argumentation. Applying the principles of grounded moral analysis, we identified that our participants’ ideas of the good in macroallocation and their normative insights into the practice were strongly aligned with the three levels of Paul Ricoeur’s ‘little ethics’: ‘aiming at the “good life” lived with and for others in just institutions’. Our findings suggest new ways of understanding how doctors’ values might have procedural and substantive impacts on macroallocation, and challenge the prevailing assumption that doctors in this milieu are motivated primarily by deontological considerations. Our empirical bioethics approach enabled us to identify an ethical framework for medical work in macroallocation that was grounded in the values and ethical intuitions of doctors engaged in actions of distributive justice. The concordance between Ricoeur’s ‘little ethics’ and macroallocation practitioners’ experiences, and its embrace of mutuality, suggest that it has the potential to guide practice, support ethical reflection, and harmonise deliberative practices amongst actors in macroallocation generally. (shrink)

Philosophy has long been concerned with ‘moral status’. Discussions about the moral status of children, however, seem often to promote confusion rather than clarity. Using the creation of ‘savior siblings’ as an example, this paper provides a philosophical critique of the moral status of children and the moral relevance of parenting and the role that formative experience, regret and relational autonomy play in parental decisions. We suggest that parents make moral decisions that are guided by the moral significance they attach (...) to children, to sick children and most importantly, to a specific sick child (theirs). This moral valorization is rarely made explicit and has generally been ignored by both philosophers and clinicians in previous critiques. Recognizing this, however, may transform not only the focus of bioethical discourse but also the policies and practices surrounding the care of children requiring bone marrow or cord blood transplantation by better understanding the values at stake behind parental decision making. (shrink)

Peer review of manuscripts for biomedical journals has become a subject of intense ethical debate. One of the most contentious issues is whether or not peer review should be anonymous. This study aimed to generate a rich, empirically-grounded understanding of the values held by journal editors and peer reviewers with a view to informing journal policy. Qualitative methods were used to carry out an inductive analysis of biomedical reviewers’ and editors’ values. Data was derived from in-depth, open-ended interviews with journal (...) editors and peer reviewers. Data was “read for” themes relevant to reviewer anonymisation and interactions among editors, reviewers, and authors. Editors and peer reviewers provided three arguments that would support a more open and interactive peer-review process. First, a number of participants emphasised the importance of not only ensuring the scientific quality of published research but also nurturing their colleagues and supporting their communities. Second, many spoke about the ongoing moral responsibilities that reviewers and editors felt toward authors. Finally, participants spoke at length about their enjoyment of social interactions and of the value of collective, rather than isolated, reasoning processes. Whether or not journal editors decide to allow anonymous review , the values of editors and reviewers need to be seriously addressed in codes of publication ethics, in the management of biomedical journals, and in the establishment of journal policies. (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)

Doctors are increasingly enjoined by their professional organisations to involve themselves in supraclinical advocacy, which embraces activities focused on changing practice and the system in order to address the social determinants of health. The moral basis for doctors’ decisions on whether or not to do so has been the subject of little empirical research. This opportunistic qualitative study of the values of medical graduates associated with the Sydney Medical School explores the processes that contribute to doctors’ decisions about taking up (...) the advocate role. Our findings show that personal ideals were more important than professional commitments in shaping doctors’ decisions on engagement in advocacy. Experiences in early life and during training, including exposure to power and powerlessness, significantly influenced their role choices. Doctors included supraclinical advocacy in their mature practices if it satisfied their desire to achieve excellence. These findings suggest that common approaches to promoting and facilitating advocacy as an individual professional obligation are not fully congruent with the experiences and values of doctors that are significant in creating the advocate. It would seem important to understand better the moral commitments inherent in advocacy to inform future developments in codes of medical ethics and medical education programs. (shrink)

Robin Downie has distinguished between two enduring cognitive and practical attitudes that have determined the way that doctors and societies thought about medicine. The Hippocratic tradition attached its faith to empirical observation and rational induction and deduction, while the Asklepian approach was holistic, intuitive and strongly spiritual. Hippocrates sought to generalize from individual observations, to generate rules and guidelines from pooled experience. Asklepian physicians believed that cure lay in understanding the personal experience of each patient, and in providing an ambience (...) of healing centered on temples and sacred ground. Hippocratic medicine emphasized the empirical.. (shrink)

Why on earth should literary skills, or even a love of literature, make for a better doctor? Gribble (1992) has argued that encouraging literary critical skills sharpens those specific skills but has no benefits that flow into other cognitive areas. Nussbaum (1995), per contra, has claimed that literature does indeed allow imaginative participation in situations that are ethically challenging and therefore encourages the development of phronesis, or practical wisdom. Robin Downie (1994) taught an immensely popular course on medicine and the (...) arts in Glasgow. Osler (1948) listed the great works that every medical student should read. And so it goes, one authority after another telling us that education in the humanities makes for better ethics, communication, empathy, humanity, understanding, and so on in medical practitioners, while in the background is a small voice saying that such things as literary skills promote only literary skills.Behind the propaganda that underpins humane medic. (shrink)

Illness narratives from patients with colorectal cancer commonly record patterns of change in social relationships that follow the diagnosis and treatment of the condition. We believe that these changes are best explained as a process of facework, which reflects losses of face on the part of the patient, and which assists in the creation of new faces that convey new senses of identity. Facework is familiar in the work by E. Goffman (1955) and has been extensively reworked since his time. (...) There is considerable agreement that face is a pervasive and universal constituent of all social interaction, and that it expresses the subject's view of the way he or she would like to be considered by others in interactions. Ho's concept of multiple faces negotiated dynamically according to social context is particularly useful in understanding the purpose and techniques of facework (D. Y.-F. Ho, 1994). We propose a model of face that uses dignity as the face-expression of personal attributes and acquisitions, and honor as the face-expression of systemic capabilities and attainments. This model can be used to examine individual variations in response and adaptation to colon cancer and its treatment, and it provides a useful means of teaching health care workers about the experience of illness. (shrink)

While doctors generally enjoy considerable status, some believe that this is increasingly threatened by consumerism, managerialism, and competition from other health professions. Research into doctors’ perceptions of the changes occurring in medicine has provided some insights into how they perceive and respond to these changes but has generally failed to distinguish clearly between concerns about “status,” related to the entitlements associated with one’s position in a social hierarchy, and concerns about “respect,” related to being held in high regard for one’s (...) moral qualities. In this article we explore doctors’ perceptions of the degree to which they are respected and their explanations for, and responses to, instances of perceived lack of respect. We conclude that doctors’ concerns about loss of respect need to be clearly distinguished from concerns about loss of status and that medical students need to be prepared for a changing social field in which others’ respect cannot be taken for granted. (shrink)