Money matters: a critique of 'informed financial consent'.

In recent years, concerns about the financial burdens of health care and growing recognition of the relevance of cost to decision making and patient experience have increasingly focused attention on financial 'transparency' and disclosure of costs to patients. In some jurisdictions, there have been calls not only for timely disclosure of costs information, but also for 'informed financial consent'. However, simply putting the 'financial' into 'informed consent' and invoking an informed consent standard for cost information encounters several ethical, legal, and practical difficulties. This article will examine the viability and desirability of 'informed financial consent', and whether it is possible to derive ideas from traditional informed consent that may improve decision making and the patient experience. We argue that, while there are important legal, ethical, and practical challenges to consider, some of the principles of informed consent to treatment can usefully guide financial communication. We also argue that, while medical practitioners (and their delegates) have an important role to play in bridging the gap between disclosure and enabling informed (financial) decision making, this must be part of a multi-faceted approach to financial communication that acknowledges the influence of non-clinical providers and other structural forces on discharging such obligations.

Medicine in the marketplace: clinician and patient views on commercial influences on assisted reproductive technology.

RESEARCH QUESTION: What are the views and experiences of patient and expert stakeholders on the positive and negative impacts of commercial influences on the provision of assisted reproductive technology (ART) services, and what are their suggestions for governance reforms? DESIGN: Semi-structured interviews were conducted with 31 ART industry experts from across Australia and New Zealand and 25 patients undergoing ART from metropolitan and regional Australia, between September 2020 and September 2021. Data were analysed using thematic analysis. RESULTS: Expert and patient participants considered that commercial forces influence the provision of ART in a number of positive ways - increasing sustainability, ensuring consistency in standards and providing patients with greater choice. Participants also considered commercial forces to have a number of negative impacts, including increased costs to government and patients; the excessive use of interventions that lack sufficient evidence to be considered part of standard care; inadequately informed consent (particularly with regard to financial information); and threats to patient-provider relationships and patient-centred care. Participants varied in whether they believed that professional self-regulation is sufficient. While recognizing the benefits of commercial investment in healthcare, many considered that regulatory reforms, as well as organizational cultural initiatives, are needed as means to ensure the primacy of patient well-being. CONCLUSIONS: The views expressed in this study should be systematically and critically examined to derive insights into how best to govern ART. These insights may also inform the design and delivery of other types of healthcare that are provided in the private sector.

Moral justification for the use of 'add-ons' in assisted reproductive technology: experts' views and experiences.

RESEARCH QUESTION: What factors do assisted reproductive terchnology (ART) providers take into account when they make decisions about offering 'add-ons'? DESIGN: A qualitative analysis of interviews with 31 ART professionals, focusing on their views and experiences in relation to add-ons, including the factors that are considered when doctors make decisions about their use. RESULTS: The participants reported that a range of considerations are taken into account when it comes to justifying the use of a particular add-on in a given circumstance, including the likelihood of benefit and harm, patients' perceived psychological needs and preferences, and organizational expectations. Importantly, patient preferences, psychological factors and low risk of harm appear to be stronger motivations than increasing the likelihood of a live birth or the desire to innovate. CONCLUSIONS: These findings suggest that it cannot be taken for granted that add-ons and innovation are closely linked. One possible response to this would be regulatory reform; for example, only allowing 'unproven' add-ons to be used in the context of formal scientific evaluation. Alternatively, it could be made clear that add-ons that are not undergoing formal evaluation have more in common with other therapies lacking a clear evidence base, such as complementary and alternative medicines, than with conventional medical practice. Practices in relation to add-ons may also require a focus on the responsibilities of corporations, and the standards applying to purveyors of consumer goods and services.

What moral weight should patient-led demand have in clinical decisions about assisted reproductive technologies?

Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as 'add-ons' to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay 'whatever it takes' to have a baby. However, there is uncertainty as to what moral weight should be placed on patient-led demands in ART, including whether it is acceptable for such demands to be invoked as a justification for intervention. We address this issue in this paper. We start by elucidating what we mean by 'patient-led demand' and synthesise some of the evidence for this phenomenon. We then argue that a doctor's professional role morality (PRM) yields special responsibilities, particularly in commercialised healthcare settings such as ART, because of the nature of professions as social institutions that are distinct from markets. We argue on this basis that, while there may be reasons (consistent with PRM) for doctors to accede to patient demand, this is not always the case. There is often a gap in justification between acceding to patient-led demands and providing contested interventions, particularly in commercial settings. As a result, acceding to demand in such settings needs a strong justification to be consistent with PRM.

Response-An Extreme Ordeal: Writing Emotion in Qualitative Research.

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.

Testimonial injustice: discounting women's voices in health care priority setting.

Testimonial injustice occurs when bias against the credibility of certain social identities results in discounting of their contributions to deliberations. In this analysis, we describe testimonial injustice against women and how it figures in macroallocation procedure. We show how it harms women as deliberators, undermines the objective of inclusivity in macroallocation and affects the justice of resource distributions. We suggest that remedial action is warranted in order to limit the effects of testimonial injustice in this context, especially on marginalised and disadvantaged groups, and propose three areas for action, whose implementation might feasibly be achieved by those immediately involved in macroallocation.

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.

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.