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narrative

First impressions only happen once

7 Jun, 16 | by cquigley

 

Fergus Shanahan

 

Eyes smiling, face beaming, the porter rose from his stool to greet arrivals at the cancer centre, each nervously hesitant, staying close to a supporting loved one. With the confidence of a man who enjoyed being good at his job, he paused for those needing directions, reassured us that we were in the right place for our appointment, and then boomed: “Welcome everyone, and good luck to you all today.”

Good start. After that, we didn’t mind inconveniences like waiting for the single working elevator and felt better about whatever unknowns were ahead. The moment was still fresh when we got to the sixth floor. There, we faced a receptionist unable to switch her gaze from a computer to address us. Detached with jaded eyes fixed elsewhere, her outstretched arm dispatched us to an adjacent touch screen to register. We obeyed but the system insisted on a five-digit address code. Bad enough to be labelled ‘international’ as code for not having acceptable insurance, but not having a zip code was a new stigma. Before we could explain, Miss No-Eye-Contact was on the phone staring at some distant point behind us, then back to her screen with a facial expression that said: “Can’t you see! I’m busy.” Bristling a little, I blurted out my son’s details to demand attention. Without the slightest shift in posture, she confirmed our existence in the system with a few flicks of her keyboard. Progress. Then she left us with the unsettling comment: “Hmm, that’s interesting…take a seat and wait while I check with Accounts.” This is not what patients want to hear as they contemplate the prospect of major surgery. No one wants to be that kind of interesting.

Joe shot a warning glance at me “Dad…don’t be rude with this lady. Don’t lose it!”

Lose it! After 8 months of continual worry and stress trying to steer my son through the complexities and decision-making of a young man’s cancer treatment, I was determined not to ‘lose it’. We were overseas in a different healthcare system for a high stakes operation. They were now in charge and I would just have to play it their way. After all, I wasn’t the patient. I was supposed to be the support. So I stayed quiet. Then, the silence was broken, delightfully so, it seemed to me, when an old woman behind us flatly refused to have anything to do with self-registration. Dismissing the technology with an impatient wave of her hand, she snapped at no one in particular in a brash accent: “I’m not gonna do it, I can’t be bothered with that.”

Miss No-Eye-Contact receptionist had met her match.

While waiting, I imagined myself telling anyone seeking my opinion that professional staff within medical offices and hospitals should heed the little things that comfort patients. I would tell them that little things are important. Staff should know that routine for them is crisis for the patient. I would remind them that there is only one opportunity to make a first impression. First impressions are made up of little things. Little things can make a big impression. If the front office experience is poor, anxiety increases and confidence in the rest of the enterprise becomes more doubtful. In other words, if the dentist’s receptionist is a barracuda, don’t expect much pain relief when you get to the back office.

Then, we heard our name called out and we were on our way into the back office.

The interview with the surgeon was probably over within minutes but it seemed much longer. He began with a firm handshake. Then, sitting beside us not across a table, he spoke confidently in clear, crisp, explanatory sentences. These, he must have repeated on hundreds of previous occasions but it didn’t seem that way. He anticipated our questions and acknowledged our sense of urgency.

In the end, the professionalism of the porter that morning and his memorable welcome was the bellwether for what followed. The surgeon’s skill and experienced team determined what was to be a favourable outcome. But something else made a difference and a lasting impression. To borrow from the poet Maya Angelou:  “…people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

 

Fergus Shanahan, MD, DSc

Professor and Chair,

Department of Medicine,

Director, APC Microbiome Institute

University College Cork,

National University of Ireland

Tel +353-(0)21-4901226  also cell phone 086 280 4881

FAX +353-(0)21-4345300

F.Shanahan@ucc.ie

 

 

The Reading Room: ‘Making Medical Knowledge’

25 Apr, 16 | by cquigley

 

Making Medical Knowledge

By Miriam Solomon

Oxford University Press, 2015

 

Reviewed by Dr Jonathan Fuller, University of Toronto

 

We should forgive anyone unfamiliar with recent trends in ‘scientific medicine’ for thinking that within scientific medicine there are now multiple medicines to choose from: evidence-based medicine (EBM), translational medicine, narrative medicine, personalized medicine, and so forth. These approaches are not distinct professions in the same sense as allopathic medicine and naturopathy. But just what are the relationships among modern medicines many ‘medicines’?

In Making Medical Knowledge [1], philosopher Miriam Solomon sets out to assess four of these movements introduced over the last forty years: medical consensus conferences, EBM, translational medicine, and narrative medicine. She calls them ‘methods’ to be concise, but notes that they are distinct epistemological approaches, or approaches to (medical) knowledge. Solomon writes that she selected these four methods because of their “dual and paradoxical epistemic character” (p. 14): there is something obvious about each of them (of course medicine should be ‘based on evidence’), as well as something odd (‘evidence-based medicine’ deemphasizes many kinds of evidence, including expert consensus). Given how much time, effort and money is being spent in the name of these movements, a close inspection is certainly warranted.

Solomon’s approach in her book is to examine these methods using an interdisciplinary lens. She situates her study in the realms of social epistemology, philosophy of medicine, integrated history and philosophy of science, science and technology studies (STS), and critical medical studies. She describes her approach as “Naturalistic, Normative, Applied, Pluralist, Social Epistemology” (p. 11); in other words, she aims to describe and evaluate actual medical knowledge and practice using a diverse set of tools, and with a focus on the social. She writes for a broad academic audience, including the medical community.

In the introductory chapter, Solomon argues that “[t]he science/art dichotomy is no longer a fruitful disciplinary divide” or a meaningful way of describing medicine (p. 11). She instead argues that a ‘methodological pluralism’ describes contemporary medicine and its many methods for negotiating knowledge. Solomon then spends three chapters examining medical consensus conferences and group process, two chapters on EBM, one chapter on translational medicine, and one chapter on narrative medicine. The penultimate chapter advances Solomon’s ‘developing, untidy, methodological pluralism’. According to this view, medicine’s epistemological approaches do not have exclusive domains of application; all of the methods she describes are in active use, their domains overlap, they sometimes come into conflict with one another, and there is no “hierarchy of methods” (p. 229) to rescue us when they clash. The final chapter summarizes Solomon’s main conclusions.

Making Medical Knowledge is an excellent and pioneering study of some of the dominant movements in early Twenty-First Century medicine, which – with the exception of EBM – are relatively unexplored by scholars. It provides a good entry point, offering detailed and insightful reconstructions of each method within its historical context, thus satisfying Solomon’s descriptive aim. The historical detail is rich, especially for medical consensus conferences. Solomon is charitable towards each method, and manages to find substance amidst the rhetoric, even for translational medicine, which is especially difficult to pin down and appears at first glance to offer no more than metaphor. She also provides thoughtful criticisms of each method, thus satisfying her normative aim.

Overall, I think Solomon pitches the discussion well for the broad audience she has in mind. The philosopher, historian, sociologist and anthropologist should all find something of interest in her book. I expect that clinicians, especially within academic medicine, will find it fairly accessible. Satisfying the needs of her diverse audience perhaps prohibits Solomon from going into as much depth as some philosophers, historians or social scientists might like. Such is the cost of interdisciplinarity, but it pays off in the form of a study that benefits from its use of multiple disciplinary lenses.

While I generally agree with Solomon’s analysis of each method, I was not fully convinced that an ‘untidy, methodological pluralism’ is the best way to understand the relationships among the methods. Solomon accepts that the methods are often active at different stages of research, but nonetheless argues that they do not fall on a “tidy linear spectrum” from research to practice (p. 206). Yet as her own analysis reveals, translational medicine (research from ‘bench to market’, or ‘T1’) refers to basic medical science research as well as Phase I and II clinical trials, EBM appraises and aggregates the results of Phase III trials, medical consensus conferences make therapeutic recommendations based on the results of Phase III trials or systematic reviews of trials, and narrative medicine (in its integrated form) interprets guidelines and the research literature in the context of the patient’s story. In other words, translational medicine applies to medical research, consensus conferences apply to knowledge dissemination, and EBM and narrative medicine apply to clinical practice. The main purpose towards which each method is put is unique: translational medicine develops new medical technologies, consensus conferences develop consensus statements or clinical guidelines (often pertaining to those technologies), EBM appraises evidence and applies it in clinical practice, and narrative medicine uses narrative techniques at the bedside. Thus, their domains are less overlapping and arranged more linearly than Solomon’s untidy pluralism might suggest.

Of course, the practice of EBM might sometimes conflict with the practice of narrative medicine (more on this point in a moment). Moreover, the practice of narrative medicine or of EBM might sometimes conflict with the products of consensus conferences: clinical guidelines. Narrative medicine locates individuality in the patient’s narrative, and EBM is often defined as the use of evidence in the care of individual patients [2]. On the other hand, guidelines make recommendations for broad groups of patients, not for individuals.

Solomon presents the example of breast cancer screening for women in their forties to illustrate the various ways that the methods can clash with one another. However, most of the conflict that Solomon describes occurs within each method: among pathophysiologic theories of breast tumour development, among primary studies and systematic reviews with respect to the magnitude of benefit from screening, and among guidelines making recommendations about mammography. While some of the products of EBM (systematic reviews) might appear to conflict with some of the products of consensus conferences (guideline recommendations), the former recommending against mammography and the latter often recommending in favour of mammography, this appearance is illusory. The evidence, on its own, does not have the power to recommend. Conflicts arise among individuals and groups due to their differing interpretations of the evidence and divergent recommendations for which they use the evidence to argue.

Similarly, it might appear that generalized breast cancer screening guidelines conflict with the individualized practice of narrative medicine or EBM. However, even though guidelines make general recommendations on mammography for women in their forties, Solomon notes that the guidelines explicitly state that patients and their physicians should make an individualized decision. There is thus less conflict among the different methods than first meets the eye.

Rather than an untidy methodological pluralism, another way to describe the situation is as follows. Medical research has a dominant aim (‘translation’), and medical practice has a dominant epistemology (EBM). The aim of translation regulates the funding of research, and motivates the use of consensus conferences to disseminate knowledge. Meanwhile, EBM has been embraced by leading medical journals and medical training programs around the world. While medical consensus conferences and clinical guidelines predate EBM, they are now based on the principles of EBM and can be considered EBM tools (the use of evidence-based practice guidelines has been called the ‘using mode’ of EBM [3]). The practice of narrative medicine might sometimes conflict with the practice of EBM. But narrative medicine is a developing movement and approach to clinical medicine, not a dominant one. It does not yet have the political power of EBM. Thus, within research and medical practice, there is more hegemony and less egalitarianism than Solomon’s untidy pluralism perhaps suggests.

Making Medical Knowledge raises interesting questions about the function, theory and practice of medicine’s most influential movements. Modern medicine is a mess of many ‘medicines’, and while it is not the intention of this book to make this mess look tidy, Solomon does succeed in making it intelligible.

 

Acknowledgments

I gratefully acknowledge funding support from the Canadian Institutes of Health Research.

 

Funding

Canadian Institutes of Health Research.

References

  1. Solomon M. Making Medical Knowledge. Oxford: Oxford University Press, 2015.
  2. Sackett DL, Rosenberg WMC, Gray JAM, Haynes RB, Richardson WS. Evidence Based Medicine: What It Is and What It Isn’t. British Medical Journal 1996;312:71 – 72.
  3. Straus S, Glasziou P, Richardson WS, Haynes B. Evidence-Based Medicine: How to Practice and Teach It. Edinburgh: Elsevier Churchill Livingstone, 2011.

Ayesha Ahmad: ‘Lahore is an Illusion, Lahore is Everywhere’

27 Mar, 16 | by Ayesha Ahmad

The mango tree faded many shadows ago, its fruit became stones and the branches became a skeleton. Yet, the roots remained, and they embrace the soil in the womb of the earth.

images-1

This was the cradle of my family’s birth.

Now, blood is watering Lahore’s gardens.

In sorrow, I remembered these words given to me a few days ago by my father.

 ‘Lahore is an illusion, Lahore is everywhere’

I wondered about them for sometime afterwards and I did not realise the gift that these words were to become.

more…

Take Me With You: the Museum of Friendship, Remembrance and Loss

8 Feb, 16 | by cquigley

 

Take Me With You: the Museum of Friendship, Remembrance and Loss

6.00-8.30 pm, Thursday 18 February 2016 at the Chowen Lecture Theatre, Brighton and Sussex Medical School, Falmer Campus BN1 9PX

Museum open from 6.00 pm

Clare Best and Tim Andrews in conversation (+q&a) 6.30-7.30 pm

Drinks reception from 7.30 pm

Museum open until 8.30 pm

 

From Clare Best’s blog:

‘Here is what I wrote in my journal after Tim and I first met in a café in Brighton in January 2013:

Met Tim Andrews in Brighton 16 Jan. Thought on train on way home about some kind of flexible/low-maintenance start to a collaboration. Thought more overnight.

‘Take me with you’ – this is the phrase that kept coming to me in the night. It has connotations of journey, of packing, of accompaniment, of company, of gathering in, of sharing.

I see it perhaps for now as making ‘swaps’ by email of what each of us would take with us to the next world, if we could, if there is one… Things/ideas we hold dear. Then each of us interprets or responds to each other’s chosen thing. And so on.

The items sent might be very fragmentary and abstract. They could be anything: a line from a song, a particular person’s smile, a food, a mood, a book, a film, a favourite walk, a memory, etc etc – it could be literally anything.

So we’d build up a collage, a narrative. And each time we corresponded we’d know each other better, so we would construct a kind of overlapping journal, or a conversation, through what we’d choose and send each other.

And here we are, three years later, with a robust friendship and about 50,000 words written, quite literally, between us – and all kinds of things we’d like to show you.

It’s been a stimulating journey, full of laughter and tears and adventure and tea and cake, and we look forward to sharing it at BSMS on 18 February.

The event is free, but if you’re coming along please register in advance here.

Tim has produced a trailer and has blogged about the project.’

 

Call for Papers – special issue of the Journal of Bioethical Inquiry

4 Nov, 15 | by cquigley

 

The editors of a forthcoming (2017) special issue of the Journal of Bioethical Inquiry on “Investigating public trust in expert knowledge: ethics, narrative and engagement” are currently inviting submission of papers.

The special issue will be the first of its kind to examine the ethics of public trust in expert knowledge systems in emergent and complex global societies. Through an interdisciplinary approach, it will draw from contributions in bioethics, the social sciences and the medical humanities.

Guest Editors: Silvia Camporesi (King’s College London), Mark Davis (Monash University), Maria Vaccarella (University of Bristol)

Trust pervades personal, social and political life. Basic trust is seen as the foundation of self, trust figures in the everyday reciprocity of social relations, and governmentality is imbued with questions of trust and distrust. Trust in expert knowledge (i.e. willingness to believe, endorse and enact expert advice) has emerged as a problem for governments seeking to engage and influence publics on matters as wide-ranging as public policy on the environment and economic development, biopolitics, and wellbeing over the life course. The knowledge systems which support climate change policy have been criticized and even refuted, leading to public policy challenges for action on climate. The uptake of vaccines in populations appears to be eroding and scientific/ethical controversies have marked the field. The emerging ‘superbugs’ crisis requires that publics engage with the idea that antimicrobials are no longer available to the extent they once were. Biotechnological interventions in reproductive life and health are subject to changed expectations for expert and consumer rights and responsibilities. The recent explosion of the CRISPR genome editing debate has brought with it socio-technical expectations (e.g. CRISPR technologies as a panacea for a world rid of diseases from birth, and some say even of ageing), together with fears of eugenics and a return to the discourse of designer babies, which now seem a possibility. Public life is marked also by the questions of trust, knowledge and ethics implicated in end-of-life decision making, related controversy over physician-assisted suicide and other questions of life’s limits. Against this backdrop of troubled trust, expert knowledge and changing bio/ thanopolitics, how can governments engage publics? How do public communications take effect? How do experts and publics narrate trust? What are the ethical ramifications of efforts to garner, sustain or regain public trust? As some have argued, are we already post-trust and therefore in alternative modes of public engagement with the idea of collective life?

Topics

Contributions are solicited from the above disciplines that look at the role of narratives in the construction and deconstruction of public trust in expert knowledge and at ethical or unethical ways of engaging with the publics on a variety of topics, including but not limited to:

  • sustainability and climate change
  • public policy and economic development
  • vaccination and other biotechnologies
  • emerging infectious diseases, including superbugs
  • reproductive health
  • provider-consumer relations in health care and beyond
  • genetics, including genome editing technologies (e.g. CRISPR/Cas9)
  • race
  • end-of-life decision making

Methodologies:

We seek contributions that apply narrative approaches to bioethics, sociology, and medical humanities.

The special issue will consist of 8-10 contributions that employ a variety of methodological approaches for a recommended length of 7,000-7,500 words each.

Instructions for authors for submission to JBI can be found here:

http://bioethicalinquiry.com/wp-content/uploads/JBI_IFA.pdf

Abstract Submission and Timeline

Extended abstract of 750 words should be submitted to Dr Silvia Camporesi by January 25, 2016. Please clearly state in your abstract the methodology you are employing in your paper, and how your contribution addresses the topic of the special issue ‘‘Investigating public trust in expert knowledge: ethics, narrative and engagement’.

A decision on the abstract will be notified by Feb 15, 2016.

Full papers are expected by May 1, 2016.

Reviewed papers will be returned to authors by August 1, 2016.

Revised papers are expected by October 1, 2016.

The special issue is expected to appear in print in June 2017.

For inquiries contact Dr Silvia Camporesi: silvia.1.camporesi@kcl.ac.uk

 

The Reading Room: ePatients Conference, Queen’s University Belfast

12 Aug, 15 | by cquigley

 

ePatients

The Medical, Ethical and Legal Repercussions of Blogging and

Micro-Blogging Experiences of Illness and Disease

 

Institute for Collaborative Research in the Humanities

Queen’s University Belfast, 11-12 September 2015

The provisional programme for this conference is now available:

Friday 11th September

11.00 – 11.30         Registration

11.30 – 11.45          Welcome

11.45 – 12.45          Keynote 1:

                                      Anne-Marie Cunningham (Cardiff University)

                                    Learning with and from epatients

1.45 – 3.45               Panel 1:

                                      Chair: Nathan Emmerich (QUB)

Amy Brown (SUNY Upstate Medical University, Syracuse, New York): Grounding the Relationship Between Families and Physicians in a Digital Community: A Case Study

Columba Quigley (Reading Room Editor, Medical Humanities): The ePatient and Stories of Illness

Kristen Larson (Duke University): Autopathography and Online Community: Applying Biovalue to Understand the Lisa Adams Controversy

Yewande Okuleye (University of Leicester): You call it Marijuana and I call it Medical Cannabis: Online Identity Construction and Illness Narratives from the epatient/activist Perspective.

4.00 – 5.40              Panel 2:

                                       Chair: Pascal McKeown (QUB)

Maggie Bennett and Deborah Coleman (QUB): Cultivating Compassion through Analysis of Online Patient Narratives

Sylvia Hübel (Interfaculty Centre for Biomedical Ethics and Law, University of Leuven, Belgium): IVF Blogs and Online Forums as Sites of Patient Empowerment and Moral Agency

Angela Kennedy (independent researcher): Power and Conflict between Doctors and Patients: the Case of the ME Community

5.45                            Drinks Reception, The Naughton Gallery

7.00                           Conference Dinner, Deanes at Queen’s

Saturday 12th September

 10.15 – 11.45          Panel 3:

                                      Chair: Paul Murphy (QUB)

Rebecca J. Hogue (University of Ottawa, Canada): Cancer Blogging – A Survivor’s Story

Marie Ennis-O’Connor (Digital Media Strategist and Health Blogger): Connecting and Protecting: The Benefits and Pitfalls of Online Disclosure

Anne Lawlor (22q11 Ireland Support Group): Social Media as a Virtual Lifeline: A Support-Group Perspective of the Issues

12.00 – 1.00             Keynote 2:

                                     Julia Kennedy (Falmouth University)

                                     In Our Blood: Mapping Multiple Narrative Accounts of Leukaemia Online

 1.45 – 3.15               Panel 4:

Victoria Betton (University of Leeds and mHealthHabitat programme director (NHS)): Mental Health Discourses in Social Networking Sites

Ida Milne (QUB): A Rash of Reaction: the e-parent and the 2015 Measles Epidemics

Sally Burch (Patient Blogger at “Just ME”): The Use of Patient Blogs as a Care Resource

 

The deadline for registration is August 14, 2015.

Further information can be found here: https://epatientsconference.wordpress.com/2015/06/24/programme-and-registration/

The Reading Room: A review of ‘The Development of Narrative Practices in Medicine c.1960-2000’

1 Apr, 15 | by cquigley

 

The Development of Narrative Practices in Medicine c.1960-2000

Jones E M, Tansey E M. (eds) (2015) Wellcome Witnesses to Contemporary Medicine, vol. 52. London: Queen Mary University of London.

 

Reviewed by Ben Chisnall, Medical Student, King’s College London, UK

 

“Narrative medicine” is a term used to refer to a number of analytical and interpretative approaches towards medical practice and interactions between patients and doctors. Its remit is broad, and encompassed within its boundaries are examinations of the personal and professional stories of doctors and patients, the sense-making processes of medical discourse, literary representations of medicine and its practitioners, and the scrutiny of medical forms of writing. Yet it remains a nebulous term, and this book – a transcript of the Wellcome Witness Seminar held at Queen Mary, University of London in June 2013 – brings together many of the individuals who have driven the development of narrative medicine studies in the UK, USA and Europe to provide insight into the scholarly currents which have shaped the field as it stands today.

The book takes the form of a discussion in which a series of narrative accounts are provided by academics and clinicians, many of whom can be regarded as protagonists of the narrative medicine movement. These narratives chart the chronological development of narrative medical studies and the reasons behind its integration into universities and medical schools. What comes across as a major concern of those involved is the desire to better hear the voice of the patient, and to incorporate the patient’s perspective into the thought processes of doctors.

The discussion begins in the 1960s and 1970s, with the introduction of humanities academics into US medical schools. The two main reasons for this, the book suggests, were the desire to provide a more balanced education for medical students, and – as Professor Kathryn Montgomery explains – to “keep [students] interested in patients as they went through the great grinder.”

What is hinted at but not answered in the discussion is whether the interest in what is now referred to as “patient-centred care” within the medical profession prompted a reaching out towards the humanities, or whether the development of narrative medicine and medical humanities departments drove the medical interest in understanding the patient’s perspective. One suspects that these explanations are both correct, and that a gradual alignment of interests between clinicians and humanities academics led to a shared interest in narrative practice in medicine.

The book also touches on larger social trends which may have driven and been driven by increasing interest in narrative medicine. The growth in popularity of celebrity illness memoirs – examples given in the text by Professor Arthur Frank include the Newsweek journalist Stewart Alsop’s column about his leukaemia, and the personal accounts of breast cancer by journalist Betty Rollin and First Lady Betty Ford – indicate a growing desire to hear the voice of a patient and their experiences and interpretations of their own disease and interactions with the medical profession. A recent and useful regular addition to the British Medical Journal entitled “What your patient is really thinking” is a good illustration of how patient voices have come to be valued and their experiences seen as enlightening both for doctors and for lay readers and listeners.

Alongside the development of narrative medicine has been the establishment of medical ethics as a field of study in its own right, which the book identifies as a parallel and reinforcing influence on narrative medicine. Literature and narrative can be used to apply ethical concepts in practical situations, and stories can provide the shift in perspective needed to understand complex ethical dilemmas. Yet as Arthur Frank highlights in the discussion, medical ethics as a discipline does not capture the element of suffering inherent in narratives of illness; this is where narrative medicine can act as an influential force on ethics.

Whilst these developments were happening in the English-speaking academy, narrative medicine in mainland Europe – as described here by Professor Jens Brockmeier from the American University of Paris – looked more towards influences from psychiatry, psychoanalysis and Freud. What emerges is the sense of the ideas behind psychoanalysis working their way into the medical academy through the growth of psychiatry as a scientific discipline during the 20th Century. So too is the study of hermeneutics, which runs through much European analytical literature, applied to the process of medical interpretation: of texts, tests and tales of patients.

The discussion in the book is far-ranging in theme and chronology, and contributions are well marshalled by Professor Brian Hurwitz in the chair. It provides valuable and thought-provoking insights into the beginnings of the narrative medicine movement, and the various and geographically diverse voices captured in the text give a heterogenous feel befitting the nature of the subject under consideration. Although narrative medicine is currently a specialised area of study, the topics under discussion in the text are accessible and applicable for those unfamiliar with the field.

Reading the book brought to mind the influence of those principles at the heart of narrative medicine on the reporting of and reactions to two scandals in the NHS which have been in the public consciousness recently – the Francis Report into the standards of care at the Mid Staffordshire NHS Trust, and the revelations of abuse at a number of NHS hospitals by Jimmy Saville in the 1960s and 1970s. Mention is made in the discussion of a “crisis of compassion” in the modern NHS, and the poor standards of care at Mid Staffs were uncovered when patient voices – many of whom were elderly, and therefore less likely to command attention – were listened to and acted upon. Similarly, the rise to prominence of the voice of patients after years of dismissal led to an investigation into Saville’s abuse. These are prime illustrations of not only the impact that narrative can have on modern healthcare, but also on how the ideas behind narrative medicine delineated in this book have become widespread and valued.

The Artist in Theatre: On the Primacy of the Subjective Narrative by Jac Saorsa

8 Jul, 14 | by BMJ

Drawing Women’s Cancer explores the lived experience of gynaecological illness through a unique interrelation between art and medical science. Based in Cardiff and supported by Cardiff University and Cardiff and Vale University Health Board, the project began in 2012 as a collaboration between myself and Amanda Tristram, gynaecological surgeon. Since then it has produced two major exhibitions and several presentations both national and international.

Drawing Women’s Cancer project builds on the premise that philosophy, medical science and visual art all involve an inclusive, and often passionate form of ‘seeing’, and that they are brought into mutual relation through the equally inclusive concept of language. The concept of inclusivity here emphasises the idea that although language is the root and branch of dialogue, and indeed of narrative, neither of these phenomena are necessarily bound to the word.

As an artist and a writer, my concept of language constitutes far more than simply words, and as such it is the language of practice – and its corollary, process – that most concerns me. Consequently I understand both dialogue and narrative as practices and processes in their own right, both ‘creative’ and both profoundly and intimately immersed in experience, wherein language is evident and influential in all its forms. The Drawing Women’s Cancer project, which constitutes an in-depth exploration of experience, is therefore fundamentally and methodologically driven by a hermeneutic approach that embraces a multidisciplinary concept of language in order to delve deeply into areas of subjectivity that can often be felt impossible to express in verbal form.

Narrative language is a vital part of Drawing Women’s Cancer wherein personal narratives as related to me and transcribed either verbatim or in note form provide the foundation for the research as a whole. These are the bedrock of the experimental approach and, together with written narratives that reflect my own feelings about my encounters with women patients, and my experiences in theatre, they underpin the combination, the conceptual superimposition of word and image, verbal and visual, that is engendered through the creative process – itself unashamedly steeped in subjective experience. The creative process thus reflects and perpetuates the dialogical process that characterises my conversations with patients in a continuing dialogue between myself and drawings as I work on them. At the same time the process also responds to a further dialogue, one that speaks to my experience of the ‘Others’ experience of illness. Narrative here shakes off the strait jacket of monologue. It refuses to be confined to any prescribed spatial and temporal dimension. Narrative here becomes polyvocal and takes primacy as the vehicle by which the project as a whole continues and extends.

When a drawing is complete the story is far from over, indeed it has only just begun, and a drawing’s inherent communicative force lies in its capacity as an autonomous art object to maintain a dialogical character even beyond the relationship with its creator. As a work of art a drawing can simultaneously express and provoke emotional significance in an inter-subjective relation with the viewer, who in turn can creates his or her own narrative on ‘seeing’ in it the voices of those suffering the impact of illness, and this leads, ultimately, to the instantiation of what I want to call the meta-language, a form of communication beyond dialogue, beyond narrative and even beyond itself in terms of the expression of subjectivity. It is on the basis of narrative then, and its dialogical implications, that creative representations of the lived experience of gynaecological cancer can open up a ‘discursive space’ wherein a deeper understanding of the relation between a disease diagnosis and the overall existential impact of illness can potentially stimulate further conversations between patient and physician, between patients and their carers, and within the public arena in terms of awareness and acceptability.

So, in the true spirit of interdisciplinary practice in the Medical Humanities the Drawing Women’s Cancer project offers a direct challenge to the rationale of an uncompromising ‘art-science’ dichotomy by demonstrating that, in practice, neither can be disassociated from our understanding of humanity and the manner in which, as human beings, we engage or disengage with the society in which we are a ‘person’. Art, medical science and philosophy are all inescapably entangled here in a web of our own being and are constituent parts of the same overall human project, but visual art perhaps has the more obvious capacity to ‘bear witness’ to the trials that are often borne in the pursuance of being…in our physical enactment and psychological representation of life. Drawing Women’s Cancer is not only about disease, or medical intervention, or suffering, or the impact of illness; it is about all of these things. It is about, as Radley notes, what it feels like when ‘all sense of normality, and all the expectations of a future that accompany good health, suddenly become less real’. It is about the experience of illness, where that experience overrides all others. It is about creating a language that has the power to speak, not necessarily for the women whose personal stories are taken as the point of departure, but rather because of them, so that they may return.

For the rest of this post I would like to offer one of my own written narratives, an account of a recent opportunity to witness a gynae-oncological operation. I have attended various operations during the course of the project and all of the women who have allowed me to witness this part of their experience do so with the conviction that it will help me understand more profoundly what they are going through. Having, to borrow a term from legal channels, an ‘appropriate adult’ seems also to help sometimes as they try to deal with the natural anxieties that such an experience brings on.

Body in Flux

The image accompanying this post is a painting rather than a drawing. It is an ‘autoethnographic’ image that represents a similar operation to the one that the narrative below refers to. It serves, I hope, to demonstrate how visual language, even where there is no attempt to necessarily create an objective representation of the scene, can nevertheless communicate autonomous and coherent expressions of profound experience.

The painting is called Body in Flux. The narrative is called, simply, The Op.

Twenty minutes ago I was talking with her while she waited to be called down to theatre. She had smiled at me but it was a weak, anxious smile and there was fear in her eyes. We had a brief conversation – she seemed to appreciate the company. Hers is a difficult history, when she began to notice something was wrong she had tried to ignore the symptoms, ‘for the children’. She convinced herself it was just something minor, no need for a doctor, but she got tired of pretending she was OK and in the end she did go for help. As she lives in West Wales, she went to the local hospital and to her relief they told her there that it was nothing serious after all – ‘just abnormal cells’, nothing too much to worry about. They did however organise an appointment for here at the clinic here in Cardiff, for a biopsy. This was unusual, and even though they said not to worry, she did anyway. She worried about being in the city, she worried about her two small children at home, she worried she might die.

It is cervical cancer, quite advanced. She is to undergo a radical hysterectomy. The whole of her uterus and the surrounding tissue, the cervix and the upper part of her vagina are to be removed. The ovaries too, probably.

Reality hit hard a few weeks after the biopsy. It came suddenly, in a phone call. It was the shock! The word ‘cancer’ still makes her cry. She has no partner. She said she wasn’t ‘active in that way’ – not for ages – so she hadn’t been for Pap test for years. She had thought there was no need. She said she felt ‘stupid’ now. She is a primary school teacher; they had called her on her mobile as she was walking the kids to the classroom. They had the results of the biopsy. They told her that she had a tumour, that she had cancer. Now, here, waiting to go down to theatre, her eyes well up as she whispers the word. ‘It was the shock’, she says.

She is asleep now under the lights in the theatre. The lights are not harsh, just very strong. The huge circular structures from which they descend are acutely and disturbingly present, not just here in the room, but even more powerfully in my memory. The monstrous size of them and the pitiless, piercing illumination they provide still haunts me, despite my efforts to exorcise the horror of my own experience in the weeks that followed in paint on canvas.

I am anxious then, for her, for me, for us both. This operation is one that remains very close to the surface of my own consciousness and my presence here has psychological connotations that I cannot ignore or supplant with more rational thought, so deeply are they rooted. This is a test then to the personal limit of my focus on subjective experience. Amanda, the surgeon, knows this. She asked me when we arranged this visit, “Are you going to be OK with this one?” I felt the same way I did when she asked the very first question, the one that kick-started the whole Drawing Women’s Cancer project; she had said “Can you draw what it feels like to have gynaecological cancer rather than just what it looks like?” I knew then that I wanted to try.

Jonathon, the surgeon working with Amanda, reaches up to angle the bulbs. They are covered in their own protective ‘gloves’ so that he doesn’t burn his hands. His hands are so very important. I stand behind Amanda who is pushing paper wadding into the vagina – ‘packing’ it so that it doesn’t ‘move’ during the operation. There is so much paper left over on the floor between her feet. It is to ‘protect the excess’. The pushing, packing, continues and she says, “I pushed too hard once. I was in training and I was so scared of the consultant… we noticed that there was a lot of blood just dripping out onto the floor!”

Amanda goes to a side room to attend to the paperwork and Jonathon is left to make the first cut. Firm and certain. Vertical, from the navel to the pubic bone. He draws the diatherm slowly, painfully, through the skin of the belly and it trembles around the small part of it that is taut and stretched between his fingers. “A cut needs tension”. I am surprised that he uses a diatherm for this initial cut, deep and long as it had to be, so I ask. “Yes”, he replies, “it’s the way we do it now, but some surgeons do still use a scalpel.”

The edges of the cut sizzle and blacken. Smoke and the acrid smell of burnt flesh arise from the wound that becomes bigger, deeper as he works. He cuts down, confidently and deftly through layers of fat. My artist’s eye focuses on how the colours that move through the wound, from the skin, through the fat, to the fleshy muscle, are aesthetically beautiful in harmonious juxtaposition. First the hues of red: crimson, napthol, and the brightest perylene mingle with tiny glimpses of green and blue, the colours of shadows on the flesh, and then on through the spectrum of yellow, from the deepest cadmium to the palest, ‘prettiest’ lemon, the colours of the daffodils that are blooming outside and carry so much significance here in Wales. Cenhinen (kenHINen) means leek in Welsh, while cenhinen pedr means daffodil, or St Peter’s leek. Over the years the two became confused until the daffodil was finally adopted as a second national emblem of Wales. The cenhinen pedr then are blooming today, even as the wound is opened and the fat gives way and melts under the surgeon’s hand.

I think of Chroma, in which Derek Jarman, painter and filmmaker, extends Melville’s view that we ‘learn’ colour whilst not necessarily understanding it. It is understanding that I am seeking here, in subjective form, and in the wound as I watch it open, the red of the initial cut becomes Jarman’s ‘moment in time…quickly spent. An explosion of intensity.’ Further on, as the diatherm moves down through the soft tissuethe red ‘burns itself. Disappears like fiery sparks into the gathering shadow’. Jarman imagined four stages distinguishable in alchemy: the blackening of MELANOSIS, the whitening of LEUCOSIS, the yellowing of XANTHOSIS and the reddening of IOSIS. For me they appear here, but in a different order as I watch the diatherm cut beyond borders, deeper into the body, opening up and invading its private, once autonomous spaces. I feel the sting, but as Jarman says, Painters use red like spice’.

Amanda is back. She brings more even wadding to ‘mop up the excess’. The excess: ‘an amount of something that is more than necessary, than is permitted, or is desirable’. Excess here then, even beyond the metastasising cancer that in itself is excess to the normal cell structure.

I stand on a stool, watching as Jonathon cuts deeper into the muscle. The rectus abdominis yields to the unrelenting diatherm and allows him access to the peritoneum and the abdominal cavity. There it is, the uterus, itself now become ‘excess’. Amanda holds it in her hand. “Look” she says as she gently lifts it towards me, “and here are the ovaries”.

Fat, organs, tissue, all spill over the edges of the now gaping wound. Colours mingle at all levels of the ‘warm’ scale. I am shocked – no, not shocked – more bemused to witness what appears as a mess, a fluid ‘jumble’ of organs that belies the naïve impression that I now realize I have always held that inside we are very orderly and self-contained. Art takes precedence over science here as the boundary between order and disorder becomes confused. Either way the relationship between the two is here emphatically demonstrated through the idea of structure, the structure of the body in this case, which becomes simultaneous with function through the overall concept of process.

Jonathon and Amanda push the organs around with their hands, bullying them into compliance as they try to force them into the chest and pelvic cavities in order to isolate the uterus. But the organs keep spilling back out as if defending, even nurturing the one that is the object of attention. Yet more wadding is pushed in to hold back the tide, up into to the chest and down into the pelvis. Finally, with his arm up to the elbow inside the passive form Jonathon, like Canute, pushes and shoves with a physical force that promises a painful recovery. I am stunned by the seeming violence of it all, the brutality, the deeply and bloodily visceral reality of scene. The edges of the wound are pulled wider open with clamps that grasp the bloodied flesh and become bloodied in their turn. Now, the diatherm, held lightly first in Jonathon’s hand, then in Amanda’s probes and cuts on respective sides of the pelvic cavity, now an empty space devoid of organs and ‘excess’, save the hapless uterus, the one, which is soon to become the other. It sits isolated, bounded by smooth, ‘slippery’ walls that shine and appear translucent and yet opaque at the same time. It looks so small, so vulnerable under the threat of the diatherm, and the ovaries, white and tiny, are hiding, sheltering, in the darkness of the void.

The violence of the procedure is salutary in terms of my understanding. The pushing, the shoving, the manipulation of the bodily structures and organs, bloodied tools that are first discarded, then retrieved, then put into service to cut, to staple, to open and to close, all this is played out in front of me in sanguine ritual. The same blood pools in the crevices on the body and on the floor at Amanda’s feet, small bits of the flesh that it once made red are thrown up onto the green sheet, or down onto the floor. This is not clean, not clinical; this is raw, visceral, almost primeval. It feels… it feels. This is the unadulterated, non-sugar-coated authenticity of surgery; the cutting, the slicing, the pushing and the pulling, the packing, the mopping up… and it is all the raw bloodiness of real flesh, real wounds; nature rent and protesting. The body, once a closed space of quietude and privacy, now wide open, stretched, clamped and ‘mined’ for the tumours that threaten its very existence as they create of the acting Self (that part of being human which here, in this theatre, is absent) Sontag’s ‘non-self’.

I draw nearer to see as best I can while careful to avoid any contact with the green sheet that protects the human being who has become subject to – or is it object to –this therapeutic violation. Standing beside Amanda, I have a clear view of how she works, now with force, now with gentleness, but always with dominance. The body submits. Once the surface and the underlying defences have been breached there is little to resist the relentless subjugation of its autonomy. The chest is rising and falling gently however, normality and regularity at least in this respect confirmed by the anesthetist who watches the fluctuations of his parallel and multi-coloured digital lines.

Carefully now, the surgeons begin to work more slowly and delicately. Brutality is replaced – in the details – by the sensitivity that must dictate the smallest and most intimate of incisions. They need to explore, to single out the pelvic lymph nodes, the arteries the nerves. They are suspicious. The cancer may not have settled only in the cervix, there may be subsidiaries, so, like Selzer’s ‘predators’ on the prowl they move quietly, deliberately, stalking the prey, the obscure ‘lumps’ of flesh that have become firm to the touch and thus differentiated from the soft masses within which they hide.

And so they delve with life-preserving precision into the depths of the body, first one side then the other, moving slowly, constantly aware of how far they can to go before breaching a physical boundary impossible to cross with any hope of returning. The main tumour will be taken coldly and cleanly with the uterus, an eradication of the very taproot of the cancer’s existence, but its morbid potentiality may lie in the lymph nodes. Carefully then they search, steadily and without pity, isolating, feeling, cutting, debating, and moving on. They take various samples, all of which ‘feel’ benign, and then, there it is. A tiny lump of bloody flesh is dropped into a plastic vial and a phone call is made. This sample they are not so sure of, they need to do a ‘frozen section’. The operation has to be delayed while they await the result of the analysis because, they tell me, if it is positive there’s no point in going on. I feel suddenly cold although it is very warm in the theatre. They switch off the lights.

She is under anaesthetic for eight hours. I have to leave, and Amanda does another operation, the next lady on the list, while her first lies covered with the wound open but packed with the endless wadding paper while the sample is sent to the lab. I receive a text later in the evening. The sample was negative and they completed the hysterectomy. They left one ovary.

 

Jac Saorsa

July 2014

Troubling Narratives: Identity Matters – Conference Announcement and Call for Papers

11 Feb, 14 | by Deborah Bowman

First Call for Papers

‘Troubling Narratives: Identity Matters’
The Institute for Research in Citizenship and Applied Human Sciences, University of Huddersfield, Thursday 19th and Friday 20th of June 2014. 

Confirmed keynote speakers for the conference are:

Ann Phoenix, University of London
Ken Plummer, University of Essex

This conference builds on the University of Huddersfield’s long held tradition of hosting a bi-annual conference on narrative research. It seeks to provide a fresh context for the development and dissemination of new research, ideas, perspectives and methodologies in the field of narrative research and enquiry and aims to bring together scholars working in a range of disciplinary fields. ‘Narrative’ is well known for its looseness of definition, its multiplicity of approaches and its interdisciplinarity, which over the years has led to a richness and diversity of narrative work. Identities, both private and public and individual and collective, have long been a focus for narrative researchers, where the content, form and effects of identity story-telling have been explored in a range of areas and contexts. The focus of ‘Troubling Narratives: Identity Matters’ is to address the ‘troubles’ that now surround contemporary narratives of identity, and the ways in which previous work may simultaneously inform but also trouble and be ‘troubled’ by new narrative work in the broad area of ‘identities’.

The conference invites contributions from researchers interested in using narratives across a range of disciplines including, sociology, gender studies, psychology, law, politics, criminology, philosophy, history, anthropology, social work, education, and business and management. Topics of interest to this conference include (though are not restricted to) the following areas:

Abstracts should be no longer than 250 words. Papers may be in the form of 20 minute oral presentations, and also workshop sessions and poster presentations (the format should be clearly stated in the abstract).  All submissions must include the author/speaker(s) name, title of paper, university or organizational affiliation, and contact information. The deadline for submission of abstract is Monday 3rd February 2014. Please email your abstract to the conference organisers at:  troublingnarratives@hud.ac.uk  with ‘conference abstract’ in the subject line.  You will be notified about whether your paper has been accepted soon after Monday 10th March 2014.

The conference registration deadline is 5th June 2014. Conference costs are: Full rate: £150 to include conference dinner, or £110 excluding dinner. Student rate: £50 to include conference dinner, or £30 excluding dinner.

 

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