Discourse Communities and the Discourse of Experience.

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.

Liminality: A major category of the experience of cancer illness.

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.

Pragmatic pluralism: Mutual tolerance of contested understandings between orthodox and alternative practitioners in autologous stem cell transplantation.

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 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.

An Archeology of Corruption in Medicine.

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.

The liminal world of dementia.

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.

Procedural justice and the individual participant in priority setting: Doctors' experiences.

In this study we describe, synthesise, and discuss the experiences and views of doctors who participate as technical experts in health care priority setting, reflect on the ethical significance of the challenges to procedural and distributive justice they encounter, and propose an empirically derived practical approach to improving the fairness of the process. Between August 2015 and July 2016 we conducted semi-structured face-to-face interviews with 20 doctors in NSW, Australia, purposively selected on the basis of their participation in macroallocation. Participant selection, data collection, and analysis were carried out according to the principles of grounded moral analysis, an empirical bioethics methodology closely based on grounded theory. The doctors we interviewed attached ethical significance to a broad range of procedural concerns that militated both against the prospect of distributive justice and against their own wellbeing: unfair access to opportunities to participate in macroallocation, sexist behaviours and structures, rewards for rule-breakers, cynical and insincere practices, waste, duplication, and inefficiency, and being taken for granted. On the basis of our data, we hypothesise that the institutional conditions for macroallocation do not support the care of medical participants in deliberations. Evaluating our findings against the 'accountability for reasonableness' framework of Daniels and Sabin, we expose as incompatible with the conditions for procedural justice processes that treat participants in macroallocation unfairly or cause them to have moral unease about the justice of the enterprise. We suggest a supplementary procedure that positions commitment to the care and just treatment of participants as a foundation of any macroallocation procedure.

Evidence, Emotion and Eminence: A Qualitative and Evaluative Analysis of Doctors' Skills in Macroallocation.

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.

The values and ethical commitments of doctors engaging in macroallocation: a qualitative and evaluative analysis.

BACKGROUND: 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. METHOD: 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. RESULTS: The values held in common by the doctors in our sample related to the domains of personal ethics ('taking responsibility' and 'persistence, patience, and loyalty to a cause'), justice ('engaging in distributive justice', 'equity', and 'confidence in institutions'), and practices of argumentation ('moderation' and 'data and evidence'). 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'. CONCLUSIONS: 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.

An Archeology of Corruption in Medicine.

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.

Access to High Cost Cancer Medicines Through the Lens of an Australian Senate Inquiry-Defining the "Goods" at Stake.

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.

Debates about Conflict of Interest in Medicine: Deconstructing a Divided Discourse.

The pharmaceutical industry plays an increasingly dominant role in healthcare, raising concerns about "conflicts of interest" (COI) 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.

Doctors on Values and Advocacy: A Qualitative and Evaluative Study.

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.

Challenges to the validity of using medicine labels to categorize clinical behavior: An empirical and normative critique of "off-label" prescribing.

This study aimed to determine whether the label status of a medicine penetrates into the clinical reasoning of Australian medical practitioners and to explore the possible reasons for our findings using semistructured interviews with 14 Australian physicians. The interviews revealed 3 broad catalysts for off-label prescribing. The first of these was lack of awareness or understanding of the regulatory process in general and labels more specifically. The second was the perception that labels are not meaningful guides for clinical practice. The third was the recognition of alternative mechanisms for ensuring safe, rational, and evidence-based prescribing occurs. This research suggests that Australian physicians do not consider whether a medicine is off-label to be a reliable measure of the appropriateness of their prescribing practices. Rather, the legitimacy of prescribing practices is determined by the abilities, skills, and knowledge base of particular prescribers by a culture that encourages and supports evidence-based practice, and safe prescribing. Although labels are of minimal clinical significance, there are real conceptual, practical, and moral problems associated with conflating "good" or "better" practice with "on-label" practice, and "bad" or "worse" practice with off-label prescribing as often occurs. To ascribe greater meaning to the term "off-label" than is warranted can have the unintended consequence of casting suspicion on and making it more difficult for physicians to provide appropriate clinical care. We conclude that labeling can, in some cases, provide assurances to both clinicians and patients that their medications have been demonstrated to be safe and effective, but that clinicians should be able to continue to prescribe responsibly off-label without having any stigma attached to their practice.

Overcoming entrenched disagreements: the case of misoprostol for post-partum haemorrhage.

The debate about whether misoprostol should be distributed to low resource communities to prevent post-partum haemorrhage (PPH), recognized 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.

Ethics & evidence in medical debates: the case of recombinant activated factor VII.

We cannot just point to the facts to solve a medical debate. The use of evidence is itself a matter of values. What the evidence tells us to do tends to depend on what we see as important.

Savior siblings, parenting and the moral valorization of children.

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.