Communication, Narratives and Antimicrobial Resistance
The conference Communication, Narratives and Antimicrobial Resistance took place on the 16th of May at Merton College, Oxford, as part of the TORCH Medical Humanities programme and with the generous contribution of the John Fell Fund and the Oxford Uehiro Centre for Practical Ethics. The hybrid event (over 30 attendees in person and 100 online) explored the issue of antimicrobial resistance (AMR) , which typically is framed scientifically or medically, from a humanities perspective.
Simply put, the more antimicrobials we use, the more ineffective they become as pathogens become increasingly resistant. This means that the short term and individualistic benefits of antimicrobials need to be balanced against the long term and collective costs. Figures about current and estimated deaths caused by AMR abound in scientific reports and policy documents, with some suggesting up to 10 million deaths per year attributable to AMR by 2050. However, behind the statistics there are equally important personal stories of those enduring the costs of chronic infections that current antibiotics cannot treat and of people having to explain to patients in pain why antibiotics are not prescribed. Relationships between those providing and receiving healthcare are mediated by different experiences of dealing with disease and by difficult conversations about trade-offs between individual and collective interests. Integrating the medical-scientific approach with a humanities-based approach can help us understand and improve these dynamics, ensuring the human factor is more salient when debating AMR policy.
As Craig McLean, Professor of Evolution and Microbiology at Oxford, explained in the first keynote talk of the day, when Alexander Fleming discovered penicillin in 1928, the new antibiotic was considered a “wonder drug” and many thought we could close the book on bacterial infection. Whilst Fleming had warned in his Nobel Prize acceptance speech that excessive use of antibiotics could cause resistance, antibiotics were simply too appealing, given the huge costs of infections that could now be avoided. Unfortunately, from the 1990s there has been a “void” in the development of new antibiotics. He presented some suggestions for alternative strategies to address the problem – such as reducing consumption, especially in livestock farming, or developing alternative therapies such as phage. Yet, he also reminded us of the risks and indeed the harm caused by longstanding narratives that antimicrobials are the silver bullet in our fights against infections.
The first panel of the day was on the dissemination of AMR information. Donna Lecky from the UK Health and Security Agency (UKHSA) shared lessons learnt from her experience developing information and engagement programs. She emphasised the importance of tailoring messages to the specific target audience, for instance according age (“Gen Z” versus “Gen Alpha”) and cultural background. Anna Dumitriu, a Brighton-based visual artist and pioneer in the field of BioArt, discussed some of her artistic work aimed at prompting reflection on disease and AMR beyond the constraints of more formal channels of scientific communication, as shown here (artwork and pictures by Anna Dumitriu):
Figure 1“The MRSA Quilt” (2011) was created by embedding squares of cotton calico in chromogenic agar. This bacterial growth medium contains a dye that is taken up by Staphylococcus aureus bacteria, causing them to grow blue in colour and stain the calico.
Figure 2“Rest, Rest, Rest!” (2014) takes the form of a tiny altered antique toy hospital bed and screen which are impregnated with the extracted tuberculosis (TB) DNA and dyed with natural dyes, which were historically used as treatments for the disease
Linda Miller, London-based GP and medical educator, talked about the struggles both of healthcare providers and of patients in negotiating healthcare delivery and the potential for burnout and poor decision-making by medical professionals who are not given the space to reflect on their encounters with patients. Drawing on the theories of English developmental psychologist and psychoanalyst Donald Winnicott, she emphasised the importance of being creative and playful with art to improve wellbeing and health and to aid health professionals in thinking through everyday processes such as prescribing.
The second panel discussed patient experiences with antibiotics and resistance infections. Caroline Sampson, patient ambassador and advocate from the UK, shared her experience of living with a chronic urinary tract infection, and grappling with inadequate acknowledgement of her experience by healthcare professionals. Doctors often assume that the response to infections is simply prescribing more antibiotics, even when patients’ own experience of suffering clearly suggests that the problem persists. While doctor might have no other option than to propose long-term antibiotic courses given lack of viable alternatives, in her experience doctors sometimes assume that test results tell more about how a patient feels than the patient’s own account. This raises more general issues around “epistemic knowledge” or “power”: it is worth remembering that the scientific research of infections cannot provide doctors with expertise of how a patient feels. She also stressed the importance of patient testimony about living with resistant infections. It was mostly thanks to patient pressure, for instance, that the NHS recently acknowledged how life-changing chronic urinary tract infections can be and produced specific clinical guidelines for treating recurrent infection.
Taniya Sharmeen (biocultural anthropologist and leader of the ABACUS II antibiotic access and use project) and Proochista Ariana (Associate Professor in Global health and development, director of the MSc in International Health and Tropical Medicine) at the University of Oxford presented their joint research on issues with access to antimicrobials in some low and middle-income countries. They pointed out the complex interplay of social, cultural, and economic factors contributing to the problem. For instance, day-wage employment and food insecurity increase risk of infections and reliance on antibiotics to stay healthy enough to earn. Antibiotics are also sometimes perceived as a “strong Western medicine”, which often means a powerful and easy fix. Stigma associated with sexually transmitted infections might influence people’s willingness to seek care and encourage self-medication with antibiotics. Desire to help the community and financial incentives often drive antibiotic dispensation outside the healthcare system.
Becky McCall (PhD candidate in the Institute for Health Informatics, University College London) presented her work creating stories with patients who have experience of resistant infections. Patients only have sporadic conversations with the doctor and struggle to have their condition adequately acknowledged when channels of communications with the medical profession do not feel accessible. Her work uses “digital storytelling” to recreate and explain the feelings and experiences of those dealing with an infection through short films co-written with patients, on the model of strategies already used in the case of people dealing with various types of addiction. For instance, she showed a short film with the story of a woman with stage 4 cancer and who experienced a drug resistant infection that led to life-threatening sepsis'.
The second keynote of the day was given by Nicola Davis, science correspondent at The Guardian. She explained some of the challenges in reporting science to the general public. She focused on how science correspondence in newspapers requires reporting what is newsworthy, which in the case of AMR is particularly challenging because throughout the years the handling the problem and the general advice has not changed. So, it is rather difficult to find “the news” in an AMR story. This might contribute to making AMR less prominent in the public’s perception. For instance, she noticed that since December 2002 The Guardian published only 156 articles with the tag “drug resistance”. She also noted how science reporting is more than science communication because there is the need to assess the claims and motivations of scientists, who may sometimes inflate their claims to make their research findings newsworthy.
The third panel of the day was dedicated to “power and prescribing”. Matthew Izzet-Kay, (Consultant Gynaecologist and Urogynaecologist at The John Radcliffe Hospital, Oxford), discussed the difficulties in diagnosing urinary tract infections, which he attributed partly to limitations of both bedside and laboratory testing and partly to some persistent “misogyny and patriarchy in how women patients are treated”. His talk emphasised the importance of both the scientific and the human component in the doctor-patient relationship.
Suchita Shah, (GP, population & global health specialist and clinical communication skills tutor at the University of Oxford), discussed a primary care scenario of a patient requesting antibiotics for their child. She emphasised the importance in the doctor-patient relationship of engaging with different beliefs and values around health, and understanding the social, cultural, and economic pressures that may drive patients to seek antibiotics. This is, of course, very challenging given the various types of pressure that doctors are under, including organisational pressure to avoid doing the wrong thing (e.g. leaving infections untreated), societal and global pressures to contain AMR, and what she called “planetary pressure” to reduce the environmental impact of antibiotic prescribing. Therefore, what is conventionally framed as an individual prescribing decision, where power is held solely with the prescriber, is in reality influenced by many powerful narratives beyond the consulting room.”.
Louise Dunsmure, (Consultant Pharmacist for Antimicrobial Stewardship, Oxford University Hospitals NHS Trust), talked about the best ways of conveying information on antibiotic prescriptions and condition diagnoses to patients. Guidelines are important, she said, but often too general and uninformative. Targeted information leaflets could be used to increase patients’ trust in prescribing physicians, but only if these are made accessible to different population groups and tailored to their specific needs and worries. To this end, she explained the importance of providing information leaflets about why patients are sometimes not prescribed antibiotics.
Nicole Stoesser (Associate Professor in Infectious Disease and Consultant in Infection at Oxford) discussed the importance of communication focused on the potential harms and side-effects of antibiotics, not only at the population level, which most of the evidence and the discussion focuses on, but also for the individual who is prescribed the antibiotics and whose microbiome might be significantly affected by antibiotics, alongside other individual effects.
The final keynote of the day was given by Barbara Caddick, social and cultural historian from the Centre for Academic Primary Care at the University of Bristol. She argued that history can contribute to our understanding of current approaches to antibiotic use and prescription. As she explained, the origin of the large scale use of antibiotics in England can be traced back to the widespread access to healthcare brought about by the creation NHS. Through a digital history approach, she presented some of her work examining early communication among healthcare professionals through publications in journal from 1953 to 1969 and early advertisements for the efficacy of oral penicillin. This material indicates how difficult it was for doctors to resist prescribing antibiotics, seeing how they could save lives after years of people dying from now treatable infections. AMR was acknowledged by GPs, but was regarded as a hospital problem or an issue for the future, which often led them to decide to prescribe disregarding the cost of prospective resistance. During the ‘golden age’ of antibiotics , materials from marketing campaigns to GPs aiming to incentivise antibiotic prescription can be found in the Boots archive collections. Caddick suggests that antibiotic use has left its legacy in primary care, shaping the nature of the consultation and setting a new standard for the patient – doctor relationship.
The workshop left us with a lot to think about. AMR is not only a clinical challenge, but a social and psychological problem generated by people’s choices and structures that shape antibiotic use. Moreover, it affects different individuals differently, depending on context. In this workshop we wanted to focus on the social aspect of the problem, which is often disregarded in public and scientific discussion. Ultimately, AMR generates conflicts between individual interests in treating infections and public interests in preserving antimicrobial effectiveness. Of course, conflicts between personal and collective interests abound in healthcare and in society more broadly. However, in the case of AMR the tension is further exacerbated by the fact that healthcare providers have professional duties to pursue their own patients’ best medical interest, which makes the dynamic between protecting various interests, professional duties, and wider ethical obligations towards society particularly complicated. In fact, antibiotics are not even always in the individual patient’s best interests, yet when this is true can be difficult to determine. Whether we are talking about the science of AMR or the ethics thereof, it is important to bear in mind that behind those numbers and those ethical duties there are individuals struggling with disease, hopes for recovery, and difficult decisions about the right course of action.
by Alberto Giubilini, Sally Frampton, Tess Johnson, Will Matlock
Medical Humanities Hub, TORCH Research Hubs
