John I. MacArtney

The Problem of Complementary and Alternative Medicine Use Today Eyes Half Closed

Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in complementary and alternative medicine (CAM) represents a flight from science propagated by enemies of reason. We outline what kind of problem CAM use is for these commentators, and find that users of CAM have been constituted as duped, ignorant, irrational, or immoral in explaining CAM use. However, this form of problematization can be described as a flight from social science. We explore CAM use in light of a rigorous and robust social scientific body of knowledge about how individuals engage with CAM. By pointing to the push and pull factors, CAM user’s experiences of their body, and the problem of patient choice in CAM use, we summarize some of the key findings made by social scientists and show how they trouble many of the reasoned assumptions about CAM use.

The Liminal and the Parallax: Living and Dying at the End of Life.

Transitions to palliative care can involve a shift in philosophy from life-prolonging to life-enhancing care. People living with a life-limiting illness will often receive palliative care through specialist outpatient clinics, while also being cared for by another medical specialty. Experiences of this point of care have been described as being liminal in character, that is, somewhere between living and dying. Drawing on experiences of illness and care taken from semistructured interviews with 30 palliative care outpatients in Australia, we found that this phase was frequently understood as concurrently living and dying. We suggest that this is a “parallax experience” involving narratives of a coherent linear self that is able to understand both realities, in a way that acknowledges the benefits of being multiple. These findings have significant implications for the ways in which palliative care is understood and how the self and subjectivity might be conceptualized at the end of life.

Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying.

Home is frequently idealised as the preferred location for end-of-life care, while in-patient hospital care is viewed with suspicion and fear. Yet many people with a terminal illness spend their final days in some form of medicalised institutional setting, such as a specialist palliative care in-patient unit. Drawing on semi-structured interviews with in-patients at a specialist palliative care unit, we focus on their difficulties in finding a better place of care at the end of their life. We found that participants came to conceptualise home though a sense of bodily vulnerabilities and that they frequently understood institutional care to be more about protecting their family from the social, emotional and relational burdens of dying. For a significant number of participants the experience of dying came to be understood through what could be practically accomplished in different locales. The different locales were therefore framed around providing the best care for the patient and their family.

Moral Ambivalence and Informal Care for the Dying

Caring for the dying presents perhaps the most challenging site of informal care. Participation in informal caring roles in such contexts has been prone to reification as a virtuous social practice, often without critical reflection as to the implications for caregivers. Here, drawing on interviews with carers who were providing care in the last few weeks or days of life, we develop an understanding of informal care in this setting as a morally ambiguous social practice, framed by social relations of duty, gift and virtue, but in turn encapsulating experiences of failure, shame and suffering. Such a contradictory understanding of caregiving is critical for understanding the tensions within end-of-life settings and also for countering the concealments produced by the valorization of informal care more broadly in modern societies. We present a critical analysis of informal cares contested character at the end of life, challenging normative understandings that are complicit in producing moral ambivalence, shame and suffering for individual carers.

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: What can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes. Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Balancing exercises: Subjectivised narratives of balance in cancer self-health:

Having a ‘balanced lifestyle’ is often promoted as one way to manage the competing demands of contemporary life. For people with cancer, those demands are often multiplied, particularly when they use self-health approaches that seek to bring together an array of biomedical and complementary and alternative medicine therapies and practices. Yet, how balance is used in this complex healthcare milieu and the affects it has on experiences of illness are less well understood. In order to follow the polyphonic narratives involved, two case studies of women with breast cancer who used cancer self-health approaches were analysed. By exploring different modes of subjectivation in the case studies, balance was found to affect experiences of health in contemporary society in multiple ways. In particular, it was one way through which participants saw themselves as being able to maintain a critical engagement not just with their healthcare, but with their self and life.

How wide is the Goldilocks Zone in your health system

In astrophysics, the ‘Goldilocks Zone’ describes the circumstellar habitable zone, in which planets, sufficiently similar to Earth, could support human life. The children’s story of Goldilocks and the Three Bears, one of the most popular fairy tales in the English language, uses this metaphor to describe conditions for life that are neither too hot nor too cold and neither too close to the sun nor too far from its warmth. We propose that the ‘Goldilocks Zone’ also offers an apt metaphor for the struggle that people face when deciding if and when to consult a health care provider with a possible health problem. Drawing on decades of research in Denmark, England and Sweden on people’s accounts of their experiences of accessing health care, this essay considers the ambivalence of health care seeking that individuals face in identifying when it is ‘just right’ to consult a general practitioner and the steps that health systems and individual clinicians might take to widen the zone.