Religious Perspectives on Human Suffering: Implications for Medicine and Bioethics.

The prevention and relief of suffering has long been a core medical concern. But while this is a laudable goal, some question whether medicine can, or should, aim for a world without pain, sadness, anxiety, despair or uncertainty. To explore these issues, we invited experts from six of the world's major faith traditions to address the following question. Is there value in suffering? And is something lost in the prevention and/or relief of suffering? While each of the perspectives provided maintains that suffering should be alleviated and that medicine's proper role is to prevent and relieve suffering by ethical means, it is also apparent that questions regarding the meaning and value of suffering are beyond the realm of medicine. These perspectives suggest that medicine and bioethics have much to gain from respectful consideration of religious discourse surrounding suffering.

Views of health journalists, industry employees and news consumers about disclosure and regulation of industry-journalist relationships: an empirical ethical study.

Bioethicists and policymakers are increasingly concerned about the effects on health journalism of relationships between journalists and private corporations. The concern is that relationships between journalists and manufacturers of medicines, medical devices, complementary medicines and food can and do distort health reporting. This is a problem because health news is known to have a major impact on the public's health-related expectations and behaviour. Commentators have proposed two related approaches to protecting the public from potential harms arising from industry-journalist interactions: greater transparency and external regulation. To date, few empirical studies have examined stakeholders' views of industry-journalist relationships and how these should be managed. We conducted interviews with 13 journalists and 12 industry employees, and 2 focus groups with consumers. Our findings, which are synthesised here, provide empirical support for the need for greater transparency and regulation of industry-journalist relationships. Our findings also highlight several likely barriers to instituting such measures, which will need to be overcome if transparency and regulation are to be accepted by stakeholders and have their intended effect on the quality of journalism and the actions of news consumers.

Knowledge, beliefs, and decisions of pregnant Australian women concerning donation and storage of umbilical cord blood: a population-based survey.

BACKGROUND: Many women giving birth in Australian hospitals can choose to donate their child's umbilical cord blood to a public cord blood bank or pay to store it privately. We conducted a survey to determine the proportion and characteristics of pregnant women who are aware of umbilical cord blood (UCB) banking and who have considered and decided about this option. The survey also sought to ascertain information sources, knowledge, and beliefs about UCB banking, and the effect of basic information about UCB on decisions. METHODS: Researchers and hospital maternity staff distributed a survey with basic information about UCB banking to 1,873 women of at least 24 weeks' gestation who were attending antenatal classes and hospital clinics in 14 public and private maternity hospitals in New South Wales. RESULTS: Most respondents (70.7%) were aware of UCB banking. Their main information sources were leaflets from hospital clinics, print media, antenatal classes, TV, radio, friends, and relatives. Knowledge about UCB banking was patchy, and respondents overestimated the likelihood their child would need or benefit from UCB. Women who were undecided about UCB banking were younger, less educated, or from ethnic or rural backgrounds. After providing basic information about UCB banking, the proportion of respondents who indicated they had decided whether or not to donate or store UCB more than doubled from 30.0 to 67.7 percent. CONCLUSIONS: Basic information for parents about UCB banking can affect planned decisions about UCB banking. Information should be accurate and balanced, should counter misconceptions, and should target specific groups.

The work of living with a rare cancer: multiple myeloma.

AIM: To report findings from a qualitative study of the experiences of long-term survivors of multiple myeloma. BACKGROUND: Multiple Myeloma is a malignant disease of the bone marrow. Until recently, it was rapidly fatal. Although it remains incurable, people diagnosed with it are living longer on average, largely due to new treatments, some of which have onerous side effects. DESIGN: Prospective descriptive study. METHOD: A series of 47 in-depth interviews were conducted at 6-12 month intervals over 18 months in 2008-2010 with 10 long-term survivors of myeloma and their primary support person. Interviews were analysed using the constant comparative method (Grounded Theory). FINDINGS: To adapt to the effects of both the disease and ongoing medical treatments, participants undertook extensive 'illness work'. Most of this work fell into two broad categories. Risk work aimed to mitigate risks to the well-being of both the person with myeloma and his/her carer. Emotion work aimed to manage the feelings of self and others in a protracted cycle of remission and relapse. CONCLUSION: The experience of myeloma is increasingly characterized by issues associated with chronic disease and 'survivorship'. It is important for nurses working with people with myeloma to understand the overwhelming nature of illness work in this context. Nurses can put in place supportive measures to address the two main 'drivers' of this work: constant risk to well-being of survivors (including carers) and the recurrent need to manage emotions in social interactions.

Religious perspectives on the use of psychopharmaceuticals as an enhancement technology.

The use of psychopharmaceuticals as an enhancement technology has been the focus of attention in the bioethics literature. However, there has been little examination of the challenges that this practice creates for religious traditions that place importance on questions of being, authenticity, and identity. We asked expert commentators from six major world religions to consider the issues raised by psychopharmaceuticals as an enhancement technology. These commentaries reveal that in assessing the appropriate place of medical therapies, religious traditions, like secular perspectives, rely upon ideas about health and disease and about normal human behavior. But unlike secular perspectives, faith traditions explicitly concern themselves with ways in which medicine should or should not be used to live a "good life".

The perils of a vanishing cohort: a study of social comparisons by women with advanced ovarian cancer.

OBJECTIVE: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. METHODS: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. RESULTS: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of 'normal' others, for normalising information and information that facilitated upward identifications. CONCLUSIONS: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis-in particular, their status as a member of a 'vanishing cohort'-and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. PRACTICE IMPLICATIONS: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease.

How good is "good enough"? The case for varying standards of evidence according to need for new interventions in HIV prevention.

In 2010, randomized controlled trials (RCTs) of two different biomedical strategies to prevent HIV infection had positive findings. However, despite ongoing very high levels of HIV infection in some countries and population groups, it has been made clear by regulatory authorities that the evidence remains insufficient to support either product being made available outside of research contexts in the developing world for at least two years. In addition, prevention trials in endemic areas will continue to test new interventions against placebo. But the judgments of evidentiary standards are never value-neutral. Using the recent trials and their contexts as case studies, we examine the basis for these decisions, which will potentially delay access to scientific innovation to the people who are most urgently in need of it.

Umbilical cord blood banking: beyond the public-private divide.

Umbilical cord blood is a source of haematopoietic progenitor cells, which are used to treat a range of malignant, genetic, metabolic and immune disorders. Until recently, cord blood was either collected through donations to publicly funded cord blood banks for use in allogeneic transplantation, or stored in commercial cord blood banks for use in autologous transplantation. The line between public and private cord blood banking is being blurred by the emergence of "hybrid" models that combine aspects of both the public and private systems. The authors describe these hybrid models and argue that their emergence is explained by both market forces and public sector policy They propose that the future of the sector will depend heavily on several key developments that will differentially affect public, private and hybrid banking models.

Racially conditional donation: the example of umbilical cord blood.

While direction of donated tissue to family members has long been accepted, direction to members of specific racial groups has been opposed, on the basis that it is discriminatory and contrary to the ethos the institution of organ donation seeks to promote. It has, however, recently been proposed that racially conditional donation may provide a useful--and ethically acceptable--way to address the social inequalities and injustices experienced by certain cultural groups. This article examines the ethical, legal and cultural arguments for and against racially conditional donation, concluding that the practice is more likely to undermine the values of equity and justice than to promote them and that it may also lead to other unfavourable personal and social outcomes.

Religious perspectives on umbilical cord blood banking.

Umbilical cord blood is a valuable source of haematopoietic stem cells. There is little information about whether religious affiliations have any bearing on attitudes to and decisions about its collection, donation and storage. The authors provided information about umbilical cord blood banking to expert commentators from six major world religions (Catholicism, Anglicanism, Islam, Judaism, Hinduism and Buddhism) and asked them to address a specific set of questions in a commentary. The commentaries suggest there is considerable support for umbilical cord blood banking in these religions. Four commentaries provide moral grounds for favouring public donation over private storage. None attach any particular religious significance to the umbilical cord or to the blood within it, nor place restrictions on the ethnicity or religion of donors and recipients. Views on ownership of umbilical cord blood vary. The authors offer a series of general points for those who seek a better understanding of religious perspectives on umbilical cord blood banking.

Response-The Road Less Travelled: Why did Miles Little Turn to Qualitative Research and Where Did This Lead?

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.

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.

Decision making in a crowded room: the relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation.

Researchers studying health care decision making generally focus on the interaction that unfolds between patients and health professionals. Using the example of allogeneic bone marrow transplant, in this article we identify decision making to be a relational process concurrently underpinned by patients' engagement with health professionals, their families, and broader social networks. We argue that the person undergoing a transplant simultaneously reconciles numerous social roles throughout treatment decision making, each of which encompasses a system of mutuality, reciprocity, and obligation. As individuals enter through the doorway of the consultation room and become "patients," they do not leave their roles as parents, spouses, and citizens outside in the hallway. Rather, these roles and their relational counterpoints--family members, friends, and colleagues--continue to sit alongside the patient role during clinical interactions. As such, the places that doctors and patients discuss diagnosis and treatment become "crowded rooms" of decision making.

Religious perspectives on abortion and a secular response.

This paper concerns the medical, religious, and social discourse around abortion. The primary goal of this paper is to better understand how seven of the world's major religious traditions (Roman Catholic, Lutheran, Jewish, Islamic, Buddhist, Confucian, and Hindu) address abortion 'in the clinic'. We do not aim to critique these commentaries but to draw out some of the themes that resonate through the commentaries and place these within complex social contexts. We consider the intersection of ontology and morality; the construction of women's selfhood; the integration of religious beliefs and practices in a secular world. We suggest that for many women, religious doctrine may be balanced with secular logic as both are important and inextricably linked determinants of decision making about the termination of pregnancy.

Imagining and Preparing for the Aftermath of the COVID-19 Pandemic: A Justification for Taking Caring Responsibilities into Consideration when Allocating Scarce Resources.

Various models have been used to "emplot" our collective experience of the COVID-19 pandemic, including the epidemiological curve, threshold models, and narrative. Drawing on a threshold model that was designed to frame resource-allocation decisions in clinical care, I offer an ethical justification for taking caring responsibilities into consideration in such decisions during pandemics. My basic argument is that we should prioritize the survival of patients with caring responsibilities for similar reasons we should prioritize the survival of healthcare professionals. More generally, the pandemic reveals the fundamental importance of informal care and affords an opportunity to raise questions of justice relating to it.

You have to make something of all that rubbish, do you? An empirical investigation of the social process of qualitative research.

In this article, we examine participants' talk about qualitative research. We provide empirical support for post-structural theorizations of the interview and propose three distinct but related dimensions of qualitative research: emotional, purposive/relational, and epistemic/ontological. In this study, participants often became upset but constructed participation as enjoyable and cathartic. The purpose of participation was to assist the communities to which one belonged. Participation was an active, reflexive practice that reconstructed the self and changed knowledge about one's self. This latter epistemic/ontological dimension of participation appeared to be the most compelling for participants, but it is also the hardest to observe, with implications for how we consider the costs and benefits of participation. We suggest two practical measures for researchers and institutional review boards to consider in light of our findings: routinely asking questions about the research experience in qualitative studies and reformulating patient information statements to particularize them to qualitative research.