You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our site.

Uncategorized

Beautiful/ Dutiful Anhedonia

27 Jul, 17 | by amcfarlane

Film review: ‘My Father’, directed by Mohammed Adel, Egypt 2015

Reviewed by Professor Robert Abrams, Weill Cornell University, New York

‘My Father’ is a subtly crafted short film of unusual finesse that portrays the reality of caregiving for the elderly, particularly its emotional burdens and costs.  An older man, wheelchair-bound and with a below-knee amputation, propels himself slowly and apparently painfully; he is cared for dutifully but joylessly by his daughter in a flat that is far from clean.  The film appears to have been shot at daybreak, and much of the action takes place in semi-darkness, with an emphasis on sounds other than words — the early morning traffic of the city; the drip-drip of water; dogs barking outside; the firing of the water-heater as the caregiver-daughter attends to her morning ablutions; the crackle of eggs frying in a pan. Two worlds are awakening, large and small — the city beyond and a household inside. We watch the daughter as she proceeds, mostly in silence, through the rest of her routine, a round of obligations that includes preparing her father’s breakfast and changing the bandage of his stump.

The daughter’s facial expression is impassive throughout.  One senses that she is experiencing what has been increasingly recognized as caregiving depression.  This term refers not to the melancholic aspects of depression with obvious tearfulness and sadness, but rather to a kind of dutiful anhedonia, a sacrificial erosion of pleasure in living.  It seems that this caregiver’s only gratification may be the application of beauty cream to her face and arms after her morning shower; for this the camera initially displays a close-up, a montage of what could easily be taken for an Abstract Expressionist oil painting, with thick dabs of white against a complex multi-colored background, but then pulls back suddenly to reveal what is actually happening.

Only the daughter speaks in this film, and very sparingly at that. (The father, equally unanimated, is seen smoking a cigarette, which intentionally or not on the part of the film’s director, could be a reference to what might have contributed to his amputation in the first place).

In a most affecting sequence, the daughter, fully dressed and her morning tasks for the moment completed, sits reflectively.  It is difficult to read her emotions at this critical juncture in the film.  She is inscrutable—composed, stolid, stoic.  She is still young, and one naturally wonders what else she would be doing with her life if not caring for her elderly father.  What had their earlier relationship been like?

‘My Father’ is not necessarily an easy film to watch, but I have felt drawn to see it many times. On each occasion I have come away with greater admiration for Mr. Adel’s understated technique and thoughtful selection of detail in making his audience feel the harsh truth of care giving.  I also have come to recognize the love and willing sacrifice that run through the entire film, characteristics in fact shared by so many familial caregivers.  However it is gained, this kind of emotional understanding should, I believe, be almost a rite of passage for all physicians, but for geriatricians especially, who often encounter patients whose daily care is provided by a family member.  I was later moved to learn from Mr. Adel that this project was not only conceptual and artistic, but deeply personal for him.  The characters in ‘My Father’ are none other than his own sister and recently-deceased father.

You can read Mohammed Adel’s commentary on his film here.

Mohammed Adel on his short film, ‘My Father’

27 Jul, 17 | by amcfarlane

Egyptian director, Mohammed Adel, writes about his short film, ‘My Father’, which shows the difficulties of caring for his father in the weeks before his death. 

Writing about my short documentary film ‘My Father’ is not an easy task, just like when I started thinking of making the film itself. This is not because ‘writing’ in its own right is exhausting, but because rewinding the tape of memories around making the film brings back sad events. I write these notes after my father passed away on the 16th January 2017.

What motivates me to write are two reasons; first my desire to tell my story, a human compulsion we all have; some of us visit psychiatrists and pay them money to find someone to listen to our stories. The act of story-sharing becomes a calling, and not a luxury. The second reason for sharing is the hope that my colleague film makers might benefit from my personal account, a lesson I learnt from my friend and mentor Shawn Whitney.

The idea of making the film started after accompanying my father for the thirteenth time during a hospital admission. My father was diabetic. During this admission, my father’s leg had to be amputated due to chronic complications of diabetes; it was not salvageable this time. My father came back home in a wheel chair. A wheel-chair is not a sign of disability for an individual; it becomes a symbol of helplessness for the whole family.

I had a strong feeling that my father was about to die, and shared my worries with my sister Mona who was my strongest ally in making this film. Initially she refused to help, and strongly argued that I should not make it. I needed her on board over and above the fact that she is a professional photographer; she was the central character I wanted to show, the one who suffered the most along with my mother.

Not having a budget to make a film was not the only obstacle. My father’s consent to make it was another barrier. I thought, at least in the beginning, that I should not tell anyone in the family that I am making this film to avoid any unnecessary arguments, especially because my father had a tense relationship with all of us. I borrowed a Cannon 600D camera from my friend, Hisham Tawfeek, who gave it for free; a practical way of making a film with no budget is to rely on a ‘true friend’. I started filming inside our home with simple indoor lights, and my sister’s help, pretending that we were filming objects around the house; my father was totally oblivious to what was going on. I did not tell my mother either about what we were doing. She sensed that we were up to something suspicious. When she eventually found out, she insisted that we must tell my father, so he had a choice, either to accept or refuse. Ultimately she agreed to appear in the film, but only with her hijab.

Filming inside the house helped my father get used to having a camera around, but he did not know what we were exactly doing. He did not care; he thought that I was wasting my time making another incomprehensible film that will not make any money. It was usual for him not to show any praise throughout my career even after I studied journalism, and worked in a very prestigious journal, ‘Rose El Yousif’ in Egypt. I carried on making the film, paying little attention to my father’s criticism and our frequent arguments. You might say that I was selfish, but let me be frank with you, dear reader:  I was only trying to be focused and honest in ‘telling a story’ as ultimately the viewer will not care about the difficulties in making the film, he or she will only care about the film itself, so the viewer is selfish too.

There remains the ethical issue of filming someone without their consent or awareness. I quote here words from the French-Algerian director Naeima Bou-firkas: ‘There is a lot of controversy about the necessity of obtaining consent of characters who appear on film. It remains a debated subject that relates to the circumstances of making an individual film.’ My priority was to use film for catharsis; a vehicle to share the overwhelming mental and psychological burden that affected me then and continues to affect me now. Cinema and filmmaking is not only a medium that I love, but also a way of venting my feelings and thoughts. There are a lot of double standards in Egyptian and Arab households about what could and should be shared publicly.

I thought, justifiably, that the film title should have been ‘My Family’ as the whole family has the right to ‘speak up’ – even  more than my father who did not want to ‘speak’ – while being vigilant not to expose, suggest without incriminating, hint without pointing the finger of blame. It is a very personal film, and I did not want to cause my family any embarrassment, and I think I did that to some extent.

I shot the film in various stages of my father’s illness filming secretly from different angles and positions; my father never knew about the film till the day he died. The film was shown for the first time in August 2015 in Cimatheque Egypt, and was well received. The film premier was attended by my mother, my sister, and my brother. After the screening, my mother said: ‘’Your film is very dark. I did not know that we lived amongst all this’’. Thank you to my mother and my sister for making this film happen.

You can read a review of Mohammed Adel’s ‘My Father’ here.

Book Review: What Patients Say, What Doctors Hear

25 Jul, 17 | by amcfarlane

What Patients Say, What Doctors Hear by Danielle Ofri, Boston, Massachusetts: Beacon Press, 2017, 288 pages, £21.99.

Reviewed by Ben Bravery

 

 

It is the oldest tool in any doctor’s bag, and it is as important today as it was 200 years ago. It is not a device, gadget or pill. The side-effects are minimal, and it’s amongst the cheapest remedies around.

It is, of course, the art of conversation – that part of the doctor-patient relationship as essential to our craft as antibiotics and x-rays. Except, unlike these other components of medicine, the conversation has remained relatively unchanged since the very first healer sat down with the first patient and asked ‘So where does it hurt?’

Despite rapid advances in nearly every aspect of medical testing, diagnostics, imaging and treatment, the aural history provided by patients is still the mainstay of our process. At medical school we are taught early on that the patient’s medical history forms somewhere between 70 and 80 per cent of the diagnostic journey, after which examinations and investigations merely confirm what we’ve already heard and suspect is the underlying pathology.

In medical school, we then go on to spend a large chunk of our time neglecting the art of history-taking: instead we refine our examination skills, and knowledge of investigations and treatments. I suspect this is because, we, after all, already know how to have a conversation. Therefore, the majority of students believe that all we need to do to become competent doctors is memorise the right questions associated with particular presenting symptoms.

But according to Dr Danielle Ofri’s new work What Patients Say, What Doctors Hear, it just isn’t that straightforward.

I’m not all surprised by this – I came to medicine via a colorectal cancer diagnosis in my late 20s, an illness that stopped me in my tracks and sent me off on a different path. As my knowledge of medicine and doctoring grows, so to do my frustrations when I see parts of the system so in need of improvement.

In a refreshing re-focus on communication, Dr Ofri’s work will hopefully encourage doctors, both those with experience and those new to the profession, to reflect on how they speak to patients, just like they would reflect on new treatment guidelines and diagnostic tests.

Sadly, in the field of doctor-patient communication we have a lot of ground to make up. This method of medical inquiry has received far less attention than sexier forms of medical research. If the examples Ofri draws on, and my continued lived experience as a patient are anything to go by, large gains can be made quite easily.

So how low is the communication bar?

Low. Recently I had a colonoscopy to check for tumour recurrence. It wasn’t until I was in theatre and in the left lateral position with my sphincter exposed, breathing through an oxygen mask and watching the gooey deliciousness of Propofol enter my cannula that I realised I hadn’t met the doctor performing the procedure! Maybe, I thought, they will introduce themselves afterwards. I was mistaken; not even a quick ‘hello’.

Dr Ofri discusses the barriers to basic good-quality communication throughout her book: overflowing waiting rooms, fee-for-service, computer interfaces, paperwork and electronic medical record requirements. Despite this, she argues that we can’t afford, as a profession, to compromise our greatest tool – connecting with the sick person in front of us and engaging with them in a meaningful way.

Each chapter articulates the benefits of a strong connection: a richer medical history, a better understanding of what matters to patients, knowledge of factors that may limit their recovery, greater patient satisfaction, improved medication concordance, shorter consultation times. The list goes on.

Ofri illustrates these benefits using a comprehensive evidence base, drawing on studies into all types of doctor-patient communication from numerous branches of medicine.

For example, researchers looked at 335 patient encounters at a Swiss medical clinic where doctors were instructed to ask their opening question and then remain silent until the patient stopped. The average? A mere 92 seconds. Not the hours that Ofri’s colleagues feared would transpire if they stopped interrupting their patients.

And what about patients listening to doctors? One study found that fewer than half of patients discharged from hospital knew their diagnosis; in another study less than one in five hospital patients could name the doctor in charge of their care.

Given the wide-reaching and humanistic way Ofri writes about communication and her own journey to become a better communicator, I was initially surprised that the book lacked a nice summary for practitioners – something they could take away and memorise. On reflection, and despite our obsession with learning lists, I think Ofri the author rightly avoided this as it’s too reductionist and linear. After all, she spends a great deal of the book explaining how doctor-patient communication is actually a two-way narrative, a kind of shared journey via the spoken word – a conversation.

Key to What Patients Say, What Doctors Hear is that empathy underpins the way we communicate (or in my colonoscopy case, deciding when to communicate). Reading the book has led me to believe we need a kind of communications time-out in medicine, akin to our surgical time-outs. At the top of the protocol would be ‘Introduce yourself to the patient’; and further down, ‘How might the patient be feeling today?’

This may seem draconian. But we clearly need to make our communication with patients front-and-centre. More human. And to finally give it weight as a tool – as important as blood pressure monitoring or MRI to diagnosis – that no doctor can afford to ignore.

The Doctor as a Humanist – a Solution to Uncertainty?

18 Jul, 17 | by amcfarlane

Jonathan McFarland, (Sechenov University), Annalisa Manca (Queen’s University, Belfast), and Irina Markovina (Sechenov University) describe their upcoming symposium, “Can the Humanities Transform 21st Century Medicine?”

In October 2017, the first “The Doctor as a Humanist” symposium will be held in Palma de Mallorca, Spain, with the following subtitle “Can the Humanities Transform 21st Century Medicine?” The symposium will bring together experts in medical humanities from around the world (UK, Spain, Russia, India, USA, Canada) along with medical students from the different participating universities (Sechenov, Moscow, Pompeu Fabra, Barcelona, Queens Belfast and the Balearic Islands University), and will be divided into sections; including Literature and Medicine, Art and Medicine, and Music and Medicine. All aim to answer the above question. One of the main goals of the symposium, which is embedded in a wider pedagogic project, is to start up an International Association, which, among other things, wishes to develop ways to introduce the humanities into the medical curriculum and practice. Siddhartha Mukherjee in a recent book comments,

I had never expected medicine to be such a lawless, uncertain world…the profusion of facts obscured a deeper and more significant problem: the reconciliation between knowledge (certain, fixed, perfect, concrete) and clinical wisdom (uncertain, fluid, imperfect, abstract). (1)

There is no doubt that life in general, and medical practice, in particular, is becoming ever more technologically oriented; we just need to watch our children plugged into their mobile phones and computer screens to see this. In the last 100 years, medicine has progressed so much, and the medical tools available to doctors has multiplied to such an extent, that previously untreatable diseases can now be cured.

This is the miracle of the twentieth century, and this is due to medical research. And yet, it has changed the practice significantly, and has even, perhaps, altered the meaning of healthcare. As Danielle Ofri said in a recent article, “thanks to a century of staggering medical progress, we now live past 80, but evolution hasn’t caught up; the cartilage in our joints still wears down in our 40s, and we are more obese and more sedentary than we used to be, which doesn’t help.” (2)

This is a long way from Osler’s three Ps: placebo, palliation and plumbing; the days when the observation of patients and noting down of their symptoms, the famous “bedside manner”, was the only solution because there was little else to be done. Osler was the father of diagnostic technique – “listen to your patient, he is telling you the diagnosis” – and, in those days, doctors were steeped in classical education. Nowadays, machinery has all but replaced the doctor’s eye and ear, and although this has brought about a democratization of medical practice, it has also transformed the doctor-patient relationship to such an extent that perhaps there is more distance between them since before the days of Rene Laennec. Modern doctors are turning away from the stethoscope and physical examination to the MRI and CT scan. Clinical judgment has been superseded by complementary tests, so, what is the answer?
On the one hand, we strongly believe that medical progress such as genomics, stem cell and tissue engineering, 3D printing and so forth, will revolutionize medical practice even further, and no one will deny that the benefits to mankind will be extraordinary. But on the other hand, what will the cost of these benefits be? More loneliness, and mental health problems in the general population, and more demotivated and burned out health professionals?

Is there a solution?

The October symposium, and the subsequent The Doctor as a Humanist Association, will attempt to use and learn from the experiences of doctors from different countries and cultures to build strategies to cope with the uncertainty inherent at the core of medical practice. Ironically, our remedy is to look to the past, when the humanities played a critical part in medical care. Indeed, this separation of the humanities from medical education is only recent, and prompts a series of questions. When did it take place? What has it meant for medical education and care? Can we bring back what has been lost? Do the humanities still have a key role in the medical care framework of the 21st century and beyond? The Doctor as a Humanist will try to answer these questions, as we truly believe they could be the key to unlocking the medical education and practice of the future.

Time present and time past
Are both perhaps present in time future
And time future contained in time past.(3)

References

1.  The Laws of Medicine: Field Notes from an Uncertain Science, Siddartha Mukherjee, Simon & Schuster/TED, 2015.
2. The Conversation Placebo, Danielle Ofri, The New York Times, 19 January 2017.
3. Four Quartets, T.S.Eliot, Harcourt, 1943.

Corresponding author: Jonathan McFarland (Sechenov University): mcfarland.jonathan@gmail.com

When Truth Speaks: Discourses of the Voice in Medicine

17 Jul, 17 | by amcfarlane

Dr Ayesha Ahmad, Global Health Humanities Correspondent, has been travelling in Afghanistan and Nepal and meeting women who’s lived experience is a conflict of chronic gender-based violence. Her initiatives are to integrate storytelling into mental health trauma interventions globally in contexts of war, oppression of women’s speech, violence towards women and girls, and writing against the backdrop of rich story-telling traditions.

Often I reflect on the stories I have listened to. At these times, I collect the way I have experienced their stories; the gazes and the silences and the image of when someone looks me in the eye and speaks. These stories come from doctors, students, patients, and from people unknown to the world because of the suffering they carry. I bring these stories together in my mind. I wonder whether practicing medicine has limits; can medicine find all of humanity? I believe medicine can, and does. I always remember some feedback I received from a lecture I once gave on conflict and health; I was told I know how to tell a story. To this day, this remains a source of strength for me. This is the humanity of medicine, of the treatment of suffering whether from the clinic or the academy; the telling of and listening of stories.

I am one of countless individuals indebted to Professor Rita Charon who is working in some context of the clinic and feels at home with the concept of narrative as foundational for medical practice. My work focuses on the written narratives in mental health trauma related to gender based violence. Alongside, Charon’s pioneering research, during my PhD I saturated myself with Jacques Derrida’s notions of discourse and the signs and symbols of how we interpret and understand our experiences. To write the phrase ‘medical practice’ begs reflection; what does practicing medicine mean? Medicine places the unknown existentialisms of our human condition into a sphere of turning narratives; we find structures among these, creating universalities of being human wherever the world tilts; our births, living, suffering, dying, and death, and then the spirit, where medical practice halts and understands that spirits cannot be treated, and are only for healing. Spirits, then, are an equaliser; whilst medical practice is the handling of humanity, a spirit solidifies the existence of the story.

In my field of global health, I bear witness to the narratives of healing from the depths of all languages; the narratives of different authenticities that speak from a truth that I have perceived in the eyes of people who I am recollecting now, one by one. As Charon describes, I am honouring their stories. Their truths are speaking.

In all the stories that I have received, though, I have held disclosures yet at the same time I face distances of darkness, spaces of unfilled voices and visibilities that remain silent and unseen. This is the tragedy I am writing about. The truths that are unspoken, yet lived.

I question my role as an academic researching, lecturing, discussing ethics consultations, writing, presenting in international conferences, collaborating with non-governmental organizations, providing medical education for students and trainee doctors, and trying to find ways to free the tightly-rolled narratives of the marginalized. Medical practice provides a mode of examination for the way our stories make us ill; the somatised symptoms of a suffering that our societies suppress; because we fear bearing witness to suffering, and the telling of a story requires justice. But when the perpetrators are our protectors then what is the role of medicine? Can medicine practice justice?

I have heard the truths of doctors who witness other doctors committing abuse and violence towards patients in countries that are born from structural poverty, colonialization and chronic humanitarian crises; I have held in my hands the transcripts of traumas from the land as well as the body from asylum seekers and refugees; I have seen the pains that languages cannot speak. In all of these the truth has spoken; these are the discourses of medicine; the signs and symbols of our suffering of humanity and the patients for the practice of medicine.

Some of our greatest contemporary writers, Elif Shafak and Adiche, warn against the reduction of our identity into a single narrative. Truth also follows a similar path; symptoms of suffering are not reducible to a single narrative, not of the body, not of the mind, not of the spirit. The narratives of a narrative-based medicine are embodied, encompassing, and excite the diversity of different discourses.

We do not need to speak every language or interpret every sign or symbol to practice medicine; rather, to honour humanity, we need to have space for the truth to speak—that is, for our voice and our visibility to be present, that is the practice of medicine.

“Congenital Glaucoma”: Commentary

12 Jul, 17 | by amcfarlane

Dr Richard Ratzan gives us a commentary on his poem “Congenital Glaucoma, published in BMJ Medical Humanities, and explains why he decided to write about this case using the sonnet form.

This little girl – she was probably about 13 or 14; I don’t remember since it was about 10 years ago – was from Mexico, almost certainly illegally but I do not remember that for certain either. She was with 2 or 3 boys her same age. What struck me about the case – and prompted me to write about it – were the following: first, how animatedly happy they all were. In retrospect, given how devastated I was that she was not only blind but preventably so, I was impressed that this misfortune was not precluding their youthful joy. (Whether she was so joyful when the ophthalmologist gave her the official bad news in his office – as he did since I called him about her two days later – I do not know.) Secondly, as someone who makes it a practice to look in at least 3 to 4 sets of fundi a shift – I find it useful and I do not want to lose this skill, as I would were I to use it, as my residents do, only when I “need to”, e.g., for severe headaches or visual problems – I was astounded, as I have not been that many times in my professional life, by the sight of her fundi: each cup was a bottomless pit of featureless whiteness, with vessels falling off into them from the edge of her retina as though falling off the edge of the universe. (I was also acutely aware then, as I write “sight” now in the preceding sentence, of the irony that it was only my good vision that could diagnose her lack of it.) Thirdly, I was struck by how blasé about it my resident, a good PGY3, was. Yet again I marveled at young physicians’ lack of ability to marvel. Is it their lack of experience, the paucity of fundoscopic examinations (not that they do that many these days or ever will accrue a database with which to compare) against which to measure medical horror when they see it? Or is it simply a different attitude they bring to work, an unwillingness or youthful inability to see the wonder of clinical medicine when it rears up in front of you? It is not callousness, at least in this young resident’s case. And fourthly and lastly, I grieved at the tragedy of her being born in Mexico without the resources we in the U.S. take for granted. If her parents here had noticed her trouble seeing as a younger girl – as I am sure hers in Mexico had – she would have gone to an ophthalmologist and – case closed – gotten preventive therapy. No blindness. Which is why, as someone who knew little girls like this when I used to spend a lot of time in Mexico, I referred to it as a sacrifice – a sacrifice of Mexico’s poverty and inadequate health care. A sacrifice I tried to make more historical and poetic with references to pre-Columbian mythology.

Why a poem, and why and how a sonnet? I have been interested in telling medical stories, vignettes, case histories, in verse for years since there is an economy to verse and a freedom “to tell all the truth, but tell it slant” [ref 1], a quotation (the title of the poem, actually) from Emily Dickinson that my late physician-poet friend, John Stone – and a far greater poet than I – liked to invoke whenever he was asked the same question – why poetry? But why a sonnet and not a villanelle [ref 2] or a sestina [ref 3]? It is the liberating mode of poetry and the simultaneous discipline, the challenge, of packing everything into a tightly defined package of a sonnet’s 14 lines. First I must squeeze the facts of the case into the octet, the first 8 lines, and then the exposition of the ideas, which exposition will only work if I have been successful in the first 8 lines, into the terminal sestet, the final 6 lines. Although Shakespeare usually uses the last two lines as the “volta” (Italian for “turn”, the axis point at which the poet gets to the crux of the poem) of the sonnet, I almost always follow the Petrarchan model using a sestet to “wrap up” the case. What I find most challenging is the tension between being too economical – writing solipsistically cryptic references only I understand – and prosaically literal. The former borders on the opaque (Wallace Stevens can pull it off; I can not). The latter is the case history we have all learned to use when dealing with other medical listeners. In between is poetry. As my second son said with amazement some years ago, upon hearing that I had attended a standing-room-only poetry reading by Mary Oliver at Smith College, wondering what the big deal was about poetry, “Poetry is incomplete prose. There are words missing.” (I didn’t have the heart to tell him that his definition of poetry was a veritable haiku. I did not want to ruin his day.)

References

1. Dickinson, Emily. “Tell all the truth but tell it slant”. Poetry Foundation. Accessed May 5, 2017.
2. Williams CK. “Villanelle of the Suicide’s Mother”. Reviewed by Ratzan RM. Accessed May 5, 2017.
3. Hadas, PW. “To Make a Dragon Move: From the Diary of an Anorexic. Reviewed by Donley C. Accessed May 5, 2017.

Book Review: Understanding Health Inequalities and Justice

11 Jul, 17 | by amcfarlane

Understanding Health Inequalities and Justice: New Conversations Across the Disciplines by M Buchbinder, M Rivkin-Fish and RL Walker (eds). Chapel Hill, NC: University of North Carolina Press, 2016, 320 pages, £37.50.

Reviewed by Professor John Harrington, Cardiff University

Inequality has returned to the political agenda in Europe and North America in the aftermath of the financial collapse of 2008 and the austerity programmes which followed it. The paradoxical success in failure of Bernie Sanders and Jeremy Corbyn in US and British elections respectively marks this shift. The long decades of neo-liberal hegemony, which privileged supply-side ethics and economics over the redistribution of resources, have come to an end. Instructed by scholars such as Thomas Piketty and challenged by the Occupy movement, parties of the right and the so-called centre left now accept that a direct concern with remedying inequality is essential to sustaining the legitimacy of the capitalist order. Contemporary health policy and politics are no exception. Persistent inequality in access to care and in health outcomes, exacerbated it is claimed by austerity regimes, track patterns of social exclusion and historic disadvantage associated with gender, race, geographic location and citizenship-status. While policymaking and research on health inequalities and injustice is of longstanding, they have gained urgency in the present conjuncture.

This collection is timely therefore, containing engaging and fresh interventions on the connections between health inequality and justice from scholars working in ethics, anthropology, history of science and health policy studies. Its aim is not only to provoke reflection on how we define and address health inequalities and inequities, but also to contribute at the level of methodology, highlighting the analytical strengths, but also the blindspots of the different disciplines in their engagement with these questions. But it does much more than simply line up perspectives one alongside the other. Lively interdisciplinary dialogues are ‘staged’ within individual chapters themselves. Paul Brodwin’s essay on mental health, for example, showcases the possibility for a productive interaction between the first-person testimony of survivors and abstract work on the ethics of recognition. In a respectful reading he shows how each approach can complement the other. Personal accounts indicate the dynamic nature of the quest for respect and intersubjective recognition by former patients, while theory can clarify the values which are often simply assumed by personal accounts. His hopeful conjugation of two different genres stands in contrast to the hermeneutics of suspicion which suffuses the encounter between disciplines evident in other chapters. Thus, Eva Feder Kittay uses ethnographic accounts to challenge the assumption in law and policy that all patients exercise their autonomy to the same extent and in the same way. Her use of personal narrative here allows the reader to go deep and wide: identifying the influence of historic discrimination and location within networks of support on the ability of different individuals to behave ‘autonomously’ in accessing and benefitting from health care.

It is a notable strength of the book that the interdisciplinary conversation signalled in its subtitle is also carried on across chapters, as well as within them. Thus, Kittay’s review is augmented by the theoretical platform developed by Janet Shim and colleagues in their own critique of the ‘Patient-Centred Care’ model which has underpinned recent US health reforms. Building on the work of Pierre Bourdieu, they argue that clinical encounters are shaped by the specific ‘cultural health capital’ available to each party. This repertoire of communication skills, educational attainment, deportment and etiquette is itself unequally distributed among patients, leading to correspondingly varied attitudes and interventions on the part of their doctors.

The salience of such pre-conscious attributes (or ‘habitus’) is taken up in relation to the oral health of Mexican migrants to the US by Sarah Horton and Judith C. Barker. Drawing on extensive ethnographic work they show the enduring influence of limited access to dental work on the health and broader social prospects of the children of undocumented workers. Detailed stories of women prevented from breastfeeding by their employment conditions and the efforts made by children and young adults to hide or remedy defects make vivid the insight which several contributors borrow from Nancy Krieger, writing elsewhere, that inequality is embodied. The critique of formal autonomy is extended by Janet De Bruin and colleagues in their chapter on conceptions of risk in pregnancy, which shows how legal measures and media discourses about maternal responsibility, claimed to be based on neutral empirical studies, are in fact deeply shaped by culture and prejudice. This provides empirical substance for a critical ethical review of policy with reference to the six essential heads of well-being set out by Madison Powers and Ruth Faden in their theory of social justice and health.

The chapters discussed are animated by faith in the capacity of interdisciplinary approaches to produce new perspectives on the nature and ethical significance of health inequalities, even if their conclusions are often pessimistic in substance. Nicholas King is a notable exception to this, warning of the perils of ‘cross-disciplinary’ cherry picking which lead to easy but not wholly justifiable policy recommendations. His immediate target is the widely held view that reducing social inequalities will lead to improvements in health. That position, he argues, confuses the undeniable association of poverty and ill health, with the existence of a causal relationship between them, which has not by and large been proven. He suspects philosophers and social scientists of wilfully or carelessly paying insufficient attention to the limits of epidemiological findings and assuming their objective and value-free character in order to strengthen their own normative position. This argumentative sleight of hand will be found out, he suspects. Better to be honest and stake a direct claim for combatting social injustice, regardless of its (unproven) effect on health. This is a wise counsel, though King might have augmented it by adopting the contextualizing methods on display elsewhere in the book. A more historically-informed reading would suggest that the desire to ground interventions in ostensibly neutral studies concerning health effects is consonant with the dominance of evidence-based policymaking, and the more insidious compulsion to defer open debates on distribution and equality both typical of neo-liberalism.

The problem of causation also troubles Paula Braveman in her opening contribution to the book. She accepts that the term ‘health inequities’ gains its specific rhetorical force from the attendant notion that such disparities can be traced to unfair social structures. Like King, she accepts that this causal flow is hard to prove. Like him she wishes to avoid pinning the case for active intervention to meet health needs to this element, arguing instead that bare health inequalities are themselves of ethical significance in so far as they compound pre-existing unfairness. State responsibility to act in such cases can be based on the normative repertoire of international human rights law, and in particular its strong injunction against discrimination and its focus on remediating the position of disadvantaged groups. This is indeed a plausible reading of human rights law, though one wonders at the extent of its likely political traction in the US, which has not of course ratified the International Covenant on Economic, Social and Cultural Rights, central in this context.

State obligations are a key focus of Jennifer Prah Ruger’s chapter, which is the only one to engage directly with questions of global health justice. Based on a careful blending of governance studies and theories of justice she sees an important role for the nation state, which had previously been somewhat overlooked in the global health literature. The state is conceived of here as an indispensable lever for addressing health inequalities as between populations in different parts of the world. This is a wholly instrumental characterization. The state’s contribution is defined only in categorical and functional terms, circumscribed by universally binding standards of justice themselves based on the rights and responsibilities of individuals. No attention is paid to the historical specificity of different states, and particularly those in the global south which are the focus of most global health efforts in practice. As medical anthropologists and historians of science have shown, the work of independent states in health as in other social sectors was oriented by the aspiration for development and emancipation from the effects of colonialism widely shared among their citizens. Of course, in many cases this aspiration was bitterly disappointed. But states remain nonetheless the objects of desires and concerns which exceed the merely instrumental.

Ruger also demonstrates the power of the capabilities approach in orienting studies of health justice domestically and globally. Its emphasis on the protection and promotion of agency is a theme taken up implicitly and explicitly by many other contributors from different disciplines. Indeed, the detailed ethnographic studies and closely-read patient testimonies, as well as the critical engagement with popular discourses around pregnancy and migrant health rights, offer us wide ranging evidence of the ceaseless struggle to secure patient autonomy and health justice. Structural determinants, arising out of economic and legal constraints, as well as conscious bias and inherited disadvantage mean that health agency is almost always realized in ‘tight corners’. This crisply edited, well-constructed collection deserves our praise for directing our attention ‘up’ to the level of critical ethics, and ‘down’ to the messy world of practice and in forcing us to reflect on the often problematic, but sometimes enriching and productive relationship between the two.

CFP: Pain and its Paradoxes

11 Jul, 17 | by amcfarlane

BMJ Medical Humanities will host a special issue on PAIN in June 2018! We want you to be part of it!

Title: Pain and its Paradoxes
Abstract Deadline: August 1, 2017
Final Submission Deadline: October 1, 2017 (publication date June 2018)

Pain is almost certainly the most common illness experience on the planet. Yet, it is frequently treated poorly, and those who experience pain often endure skepticism, doubt, and stigma for their condition. In most places around the world, pain closely tracks social power structures, which means that marginalized groups are both more likely to experience pain, and are more likely to have it regarded dubiously and treated inadequately.

Moreover, while pain is a near-universal part of the human condition, it remains difficult to define and conceptualize. As Emily Dickinson famously noted, pain has an element of blank. And while pain and suffering are often experienced together, they remain distinct phenomena: some people in pain do not suffer, and some people who suffer state that they are not in pain. Pain is an essential pathway to redemption for many, and for others it exists only as a devastating, hollowing experience that defies meaning. In short, the paradoxes of pain are multiple, varied, and slippery. While pain has not escaped scholarly attention in the medical and health humanities over the last decade, current and inequitable burdens of global pain alone justify sustained focus and analysis. Accordingly, the Special Issue of Medical Humanities on “Pain and its Paradoxes” aims to integrate critical and rigorous scholarship (peer reviewed) addressing the lived experiences of pain, past, present, and future. Specifically, we invite manuscripts on subjects including but not limited to

  • The nature and concept of pain;
  • The history of pain;
  • The phenomenology of pain;
  • Narratives of pain;
  • The relationship between pain and suffering;
  • Pain as an emotional experience (including the history of pain as emotional experience);
  • Pain and anxiety;
  • Pain and sympathy;
  • Pain and grief;
  • Pain and inequalities (race, gender, class, age, disability status, etc.);
  • Pain and disability;
  • Pain and stigma;
  • Pain and pharmaceuticals, including but not limited to opioids

The editors are especially interested in manuscripts considering pain from non-Western contexts.

Interested contributors should send an abstract to EIC Brandy Schillace (bls10@case.edu) and Guest Editor Daniel Goldberg (daniel.goldberg@ucdenver.edu) no later than August 1, 2017. Final submissions should be submitted to the BMJ Medical Humanities online ScholarOne system, choosing the category Special Issue: Pain and it’s Paradoxes by October 1, 2017. All contributions will be subject to rigorous peer review.

Storytelling, Suffering, and Silence: The Landscape of Trauma in Afghanistan and Nepal

4 Jul, 17 | by amcfarlane

Dr Ayesha Ahmad, Global Health Humanities Editor, has been travelling in Afghanistan and Nepal and meeting women who’s lived experience is a conflict of chronic gender-based violence. Her initiatives are to integrate storytelling into mental health trauma interventions globally in contexts of war, oppression of women’s speech, violence towards women and girls, and writing against the backdrop of rich story-telling traditions.

As I write from the heights of Nepal, my vision is engulfed by a globe of surrounding mountains. They stand majestic and solemn into the sky. Carved deep into the mountain hearts are the trails and tracks of their wanderers’ journeys and within them are the graves of the stories that they told. At dawn, the story rose, and at dusk, the story faded.

Peacefulness betrays the legacies that we could find. The stories in the mountains are resting. This is a beautiful silence. There is a freedom in their untouched and unheard voices. Because they lay with the mystery of the mountain’s strength and existence; there is a landscape of stories and a landscape of mountains.

I came here to hold the stories that cannot rest, the stories that are suspended in a silenced captivity in hidden spaces of suffering.

The tragedy of a story is when the storyteller is no longer writing the story that she is living with within her.

The stories I was graciously given were from a women’s safe house, a vast juxtaposition to the wide and open world that her ancestors believed in. Now on her horizon there is no distance to seek, no land to explore, no story being told.

One month ago, I was writing beneath a different mountain in the heart of Afghanistan, but the stories echo, timeless and boundary-less.

It is a strange role to be receiving the telling of a story. I feel an extreme privilege to be surrounded by a story that has not been opened before. When a person gifts their story, it is a journey of exploration. Finding the story of the self creates a landscape, and to bear witness is to discover an unexplored territory, a place within a person’s world that has not been seen before.

The stories that were being shared with me were secrets, secrets in the mountains just like the mountains themselves contained secrets, journeys that no longer held paths to their destination, spaces of pure untouched land.

The tragedy of the story, though, is in its silencing. The stories were like bodies that fell from hidden mass graves, their sufferings and the deaths that buried them deep in silence were marked by injustice, brutality, violence, and isolation.

Even in the speaking of the story, the words that were falling heavy into the air were betrayed by a wounded silence. The story-teller must bear their self to tell their story, but in the diminishing of their identity as a human being, I could feel their burdens, the weight of a wish to be held as a person in their worlds. Underneath these moments where the women became their own storytellers, they were story-sufferers, suffocated by a silenced self and voice.

During the telling of their story, time felt different. Time did not pass by. There was a suspension of the time that had been lost from their lives because of violence; those moments that placed them in the grave whilst still alive and stole their breath away.

Their story became our journey. They travelled with me, we became wanderers through a language that was not ours. We wanted to speak of beauty, of dreams, of hope, but the narrative that had been sewn into their skin told a more sombre tale. Still, we continued, we took each step together through this tough terrain and we found a path through as she held her words like a fence that guided us to a space where she could kneel and touch the ground, and find her land of freedom.

I will carry their words, such precious cargo, from these mountains, cradles and graves, from the women, the silenced storytellers of Afghanistan and Nepal to the front-lines for justice.

There is silence in the mountains. Yet, silence comes from somewhere, from the winds and the valleys across their distance. Silence sounds beautiful when the silence is part of freedom, but being silenced means solitude and stagnancy. A story that cannot travel is a mountain that does not reach the sun.

The suffering of the silenced mountain story-tellers continues; there is silence, but not the absence of a voice or words, there are shadows but not the absence of self, and there are the graves of untold stories, but the mountain and her story-tellers exist together and the stories will wait their time to be told.

Film Activism: Science, Art and Social Reform

30 Jun, 17 | by amcfarlane

Our Screening Room editor, Khalid Ali (Khalid.ali@bsuh.nhs.uk), interviews film director and producer James Redford.

Activism is defined as ‘efforts to promote or direct social, political, economic and/or environmental reform to make improvements in society’. James Redford, documentary filmmaker, producer, and humanitarian uses documentary filmmaking to truly earn the title of a ‘film activist’. I met him in London in May 2017 where he was promoting his latest documentary Resilience: The Biology of Stress and the Science of Hope.

Reflecting on his inspirations for the film, James explains: ‘Resilience contains disturbing information about the adverse health effects of difficult childhood experiences. If I had not encountered something we can do to offset those experiences, I would not have made that film. I would be only displaying the medical basis for bad news. We must understand the biological risks for children exposed to emotional, physical and sexual abuse, neglect, violence or mental illness in their homes.  However, if you provide that child with even one caring, responsible, consistent adult who shows them what it means to be in a loyal, stable relationship with an adult – such as a religious leader, an extended family member, an educator, a social worker, a volunteer, or a police officer with the right training – you can minimize the toxic effects of a bad environment. And that applies globally; qualities of love, compassion, care and connectivity are universal.  In the fall of 2016, I visited The Navaho Nation, an indigenous Native American nation within the USA; I observed how their religious and cultural values reduce the risk of ill health attributed to centuries of oppression and genocide.  In their religion there is an appreciation of healing through family and community gatherings and rituals that supports the mental health of the individual. Chanting religious traditions can have the same healing effect as someone with training in care and compassion. I also showed the film in Columbia, Kazakhstan, New Zealand and now in the UK, and every time I am amazed by the overwhelmingly positive reception due to its universal message’.

When I asked Mr Redford about the conception of Resilience, he stated: ‘The story began in 2012 when I made another film, The Big Picture: Rethinking Dyslexia, in collaboration with Karen Pritzker, a notable philanthropist in the USA who supports many social causes.

Karen was working with educationalists on how to support children with dyslexia but had also known about the little-known Adverse Childhood Experiences (ACES) Theory. The science was there for 15 years, but not widely known. I read the study after she sent it to me, and along with her daughter, producer Dana Schwartz, decided to make the film. The first film we made addressing the ACEs study was Paper Tigers.

It was based on the true story of a high school principal in Walla Walla Washington who employs creative methods in supporting troubled children using the principles of ACES. A year spent at the school with the at-risk teens reveals just how far patience and compassion can go in setting kids on a healthier course.’

James Redford’s interest in using film to explore important medical issues has a personal dimension. After a childhood autoimmune illness caused liver failure, James received two liver transplants in 1993. That experience led him to making The Kindness of Strangers, an interwoven story of real-life organ donors and transplant recipients. James (who prefers to be called Jamie) reflects on his self-discovery journey in hospital wards: ‘I had to go through a lot of mental and psychological tests before the transplant operation. I came to know that having the support of close family relationships was shown to reduce failure rates in transplants. That was my first realization that there is a link between what was happening in someone’s immediate family environment and its effect on someone’s physical health. In America, in the 90s, there was a myth that transplantation medicine was a mysterious world where dark things happen, people were kidnapped, and organs were taken without their consent. I acknowledge that there are black markets for organ donation, but at the same time there is also altruism in its purest form: families who, at the time of losing a loved one, find it in themselves to consent to donate the organs of that deceased loved one. I believe that human beings have it in themselves to do beautiful, charitable things. I am alive because of it. The Kindness of Strangers was embraced by doctors, health care professionals, social workers and recognized organizations. Surviving that personal journey of illness, and recovery was the inception of the James Redford Institute for Transplant Awareness.’

The Big Picture: Rethinking Dyslexia film was another story anchored in James’ personal experience. ‘My son Dylan, who is now a successful artist at 25, was diagnosed with dyslexia at a young age – he was struggling at school as his handwriting and reading did not reflect his intellect or intelligence, so he was often labelled as lazy. Luckily my wife, a life-long educator, knew how to secure the right help for him. Karen Pritzker’s daughter, Allison Schwart, is also dyslexic, and both she and Dylan agreed to discuss on camera how and where to get support and which techniques are most helpful. Assistive technology such as dragon speech, speech recognition software, and autocorrect are terrific and now widely available. Dyslexia is not a moral or character flaw- science proves that underlying anatomical brain differences are the reason for the symptoms of dyslexia. It is important to disseminate these films and show them widely in schools.’

James’ work also reveals a passion for environmental issues. ‘I grew up in a home with parents who were active environmentalists. My father, actor/director/producer Robert Redford, has been a passionate advocate for environmental protection for over five decades. After the box-office success of Butch Cassidy and the Sundance Kid my parents bought a small family resort in the Rocky Mountains of Utah to protect the land from being developed into condominium units. At the time the land had been overgrazed by sheep and the native predators – wolf, coyote, and mountain lion – had been poisoned off the land. Under the protection of my parents, the natural landscape recovered to its original glory. I produced HBO’s Mann V. Ford, a documentary that chronicles a Native American community that was poisoned by the paint waste from the Ford Motor Company. I also directed HBO’s Toxic Hot Seat, a film that looks at the efforts of the United States chemical industry to hide the health risk of chemical flame retardants.’

In order to honor my father’s environmental legacy and to pursue my own, the two of us founded The Redford Centre, a non-profit environmental media company that has been active for 10 years now in accelerating better and healthier environments for all.

In partnership with the Redford Center, I am now completing HBO’s Happening: a Clean Energy Revolution. President Trump’s decision to break our nation’s promise to support the Paris Climate Accord in no way reflects what is happening in America with clean energy. The clean energy economy is booming at the same rate of growth we saw with radio, TV, and the Internet, and I’m hoping that the film will do its part to accelerate that growth even further. With climate change, every second counts.’

Jamie summarizes his mission eloquently: ‘My films and stories discuss problems as well as offer solutions. Through my company KPJR films and The Redford Center, I have the privilege of offering hope and solutions to some of our most vexing social, environmental, and health challenges. Through film we can bring about change, we can fix things – or at least try to do them better.’

Medical humanities blog homepage

Medical Humanities

An international peer review journal for health professionals and researchers in medical humanities. Visit site



Creative Comms logo

Latest from Medical Humanities

Latest from Medical Humanities