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The Reading Room: A review of ‘Health Humanities’

5 May, 15 | by cquigley

 

Health Humanities Paul Crawford, Brian Brown, Charley Baker, Victoria Tischler and Brian Abrams (London: Palgrave, 2015)

Reviewed by Dr Maria Vaccarella, Postdoctoral Research Fellow in Medical Humanities, Centre for the Humanities and Health, King’s College London

9781137282590

In her foundational study Manifestoes: Provocations of the Modern (1999), Janet Lyon explains that “the manifesto both generates and marks a break in history: it is both a trace and a tool of change” (16). In drafting this manifesto for the health humanities, Paul Crawford, Brian Brown, Charley Baker, Victoria Tischler and Brian Adams provide exactly this combination for change: Health Humanities (2015) traces the long-standing interplay of arts, humanities and healthcare, as well as advocating a reconceptualization of this very interaction. Scholars and practitioners in the field will be familiar with Crawford’s argument for an expansion of the medical humanities to include non-medical carers involved in the provision of health and wellbeing. What emerges more clearly from this book is a stance against “medicalised humanities”: as paradoxical as it sounds, humanists can end up privileging medical understandings of health and wellbeing issues, especially when constantly pressurized to justify their own research topics and methods, according to well-established research patterns, originated in the biomedical sciences.

This reflection on what counts as reliable research and interventions in humanities-based healthcare activities (chapter 7) is by far the most valuable contribution of this book to existing scholarship. The authors move from a careful examination of the shortcomings of evidence based medicine – unfortunately sometimes still showcased as the golden standard of health-related research – to an exploration of practice-based evidence, a helpful framework for bringing into play the positive results of recent challenges to traditional research, e.g. action research, patient advocacy, etc. This bottom-up shift in perspective will be most helpful in redressing the benefits of humanistic approaches to health-related issues, as well as dismantling the power imbalance between researchers and participants. The notion of evidence is not naively dismissed as inapplicable in the humanities; rather, it is presented as a much more nuanced concept than what is usually encountered in the biomedical sciences. As a consequence, if we want to collate results of humanities-based healthcare activities with a view of improving healthcare provision and policy, then we should reflect on an adequate methodology, given the limitations of systematic reviews and meta-analyses in this area. Crawford and colleagues suggest metasynthesis as a better way of making sense of the diverse inputs that the arts and humanities are likely to engender. Engaging in metasyntheses could also facilitate the emergence of a new, more cogent role for humanities academics interested in health-related issues, whom the authors describe as often wary of pushing their ideas into practice. A further advantage of a stronger engagement with creative practice is a resulting sense of mutual (one would be tempted to add, non-medicalised) recovery and community-building: to quote from the book, “there is a need to bring together diverse academic and community partners to share insights, approaches, methods and analytic tools in order to mobilise the concept and develop creative practice as mutual recovery to better connect communities for physical and mental health and well-being.” (142)

This invitation to fully embrace creativity is offered at the end of a survey of previous, more or less deliberate, preparatory work in a range of disciplines, from anthropology and the study of culture (chapter 2), through applied literature (chapter 3), narrative and applied linguistics (chapter 4), to performing and visual arts (chapters 5 and 6, respectively). The authors provide an introduction to the field under scrutiny in each chapter and then list a wide-ranging selection of its applications in health-related settings. There are nonetheless some inexplicably neglected areas, e.g. the role of performing arts in bringing about Patient Educators and Medical Readers’ Theatre (the benefits of which reach far beyond medical schools), or patients’ and carers’ graphic memoirs as a vivid example of the transformative, if not strictly therapeutic, potential of the visual arts. The internal organization of these chapters is also regrettably uneven. By way of an example, the chapter on anthropology ends with a most helpful set of questions, inspired by Arthur Kleinman’s exploratory models, to assist health humanities practitioners in taking stock of results from a cognate discipline to improve their own approach to patients. However, if readers expect a similarly pragmatic conclusion to all other chapters, they are bound to be disappointed. Of course, reducing innovative concepts to a list of questions could be regarded as a tedious exercise; but at least some of the disciplinary fields reviewed here (e.g. narrative medicine) would have easily yielded practical guidelines, a surely welcome gesture towards those informal carers that the authors make a point of engaging with to a greater extent. In this regard, the concise case studies boxes distributed throughout the text precisely perform this function of providing snapshots of interventions, informed by the theoretical debates surveyed in the chapters. They are so effective in showcasing the potential of the health humanities approach that one regrets that they have not been used more consistently throughout the volume.

The central tenet of Health Humanities that “the majority of healthcare and the generation of health and well-being is non-medical” (153) is indeed fascinating, especially because it could potentially evoke completely different scenarios in the context of global health. This looks like the ultimate challenge to the authors of this volume and all other practitioners of the health humanities: how can their promise of inclusiveness and internationalisation be predicated on a global scale, so that their envisioned maximisation of benefits to practitioners, informal carers and patients/carers responds to worldwide health-related needs? The manifesto has been produced; we now look forward to the change.

Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.

 

From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.

 

Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’

 

Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.

 

However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).

 

During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.

 

There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.

 

This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.

 

Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.

Reference:

  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information: http://markmaking.arts.ac.uk

Correspondence:

Dr Hannah Zeilig

University of the Arts, London

h.zeilig@fashion.arts.ac.uk

 

 

 

The Forgiveness Project: Stories for a Vengeful Age

26 Apr, 15 | by Deborah Bowman

Images of Eva Kor embracing former SS guard, Oskar Groening, at his trial in Lueneberg this week have been shared on social media and in newspapers worldwide. These images, and the responses to them, reveal much about the complex, surprising, inspiring and challenging, sometimes even threatening, nature of forgiveness. Our relationship with forgiveness, collective and individual, is always nuanced and often ambivalent. It is a slippery, shape-shifting concept that rarely exists without an undercurrent of emotion. Forgiveness can be experienced as both restorative and undermining. It may be perceived as noble and a betrayal. We may aspire to it even as we fear it. Forgiveness is a force that may be resisted or harnessed or, perhaps more often than we acknowledge, both.

 

Few have thought more about forgiveness than Maina Cantacuzino. Ten years ago she founded The Forgiveness Project. Last year, saw a series of outstanding events to celebrate a decade of its work culminating in the publication of a book – The Forgiveness Project: Stories for a Vengeful Age. It is a remarkable text that manages in a slim volume to capture the significance and unique approach of The Forgiveness Project and, in doing so, captures why its work matters more than ever.

 

Central to the book and to the work of The Forgiveness Project are stories. Those stories offer an unmediated insight into this demanding, elusive, inspiring and troubling thing we call ‘forgiveness’. It provides space, without judgement or commentary, for people to reflect on and to share what forgiveness means for them.

 

It is these narratives that form the basis of the book, although Marina Cantacuzino’s introductory essay – “As Mysterious as Love” – is an outstandingly thoughtful, and thought-provoking, exploration of forgiveness and her own personal and professional relationship with it. The book also carries two rich and insightful forewords from Desmond Tutu and Alexander McCall Smith. Yet, it is the forty individual stories that follow the introduction and forewords that form the essence of this unique work.

 

Some of those who come to The Forgiveness Project are well-known people whose capacity for compassion and empathy towards those who have caused devastation has prompted fascinated media attention across the world. Others are less familiar names but their stories are equally urgent and compelling. There is neither formula nor any sentimentality to be found. Anyone seeking sentimental salve will be disappointed. Nor do tropes of heroism or survival occur often. What is offered instead is much harder and ultimately more rewarding. These are accounts that are authentic, sometimes painful, often surprising and always affecting.

 

It is not merely the content of these stories that is noteworthy. The form reflects the discomforting and urgent nature of the tales told. All the individual contributions are short, few extend beyond five pages and the language is direct, plain and unflinching. There is force in the form. It propels the narrative, unadorned and untamed, searing each account in our memories and unsettling our own perceptions of forgiveness. The stories are presented with little in the way of preamble and often begin at points of loss, crisis and despair. The ways in which each of these accounts breaches the reader’s consciousness reflects the nature of the experiences described. These stories, like the events they relate, arrive unbidden and unexpectedly, without warning or invitation. They interrupt and disrupt. The language is spare, sometimes even brutal, and simple belying their daunting legacies. These are collisions with strangers that can change the direction of a life, or at the least, the beliefs one holds about a life.

 

These stories reveal that the force of forgiveness is often experienced viscerally. Its charge is both negative and positive. Within the book, there are no homilies or sermons about its normative value or otherwise. It is simply there: unfiltered and demanding our attention. Whether it is resisted, embraced, explored or ignored, its force cannot be avoided. A number of contributors note that it may be easier to define forgiveness by what it is not and, in so doing, they challenge much of the received wisdom about what constitutes forgiveness and why it matters. Others are less interested in definitions and the boundaries of the concept. All those who have contributed to the book attend to meaning in all its infinite variety. These are fluid explorations for alongside the meditations on forgiveness, are reflections on what it means to have hope, to be loyal, to restore dignity and ultimately to be human. That these ideas emerge from the rubble of lives shattered by loss, cruelty and destruction is not only intensely moving, but serves as testament to Marina Cantacuzino’s transformative work both in creating this book and leading The Forgiveness Project.

Prof. Deborah Bowman

Editor, Medical Humanities

St George’s, University of London

Email: dbowman@sgul.ac.uk

Twitter: @deborahbowman

 

Sarah West: Film Review ‘Wild Tales’

13 Apr, 15 | by Ayesha Ahmad

What separates us from living like animals? And what calamity or force does it take to unleash our primal instincts?

 

“Wild Tales” is a compendium of satirical short stories about the pain and pressure points of modern 21st Century life and specifically what happens to the Latin spirit under duress. What delirious lengths do we go to when the pressure of injustice reaches boiling point and something inside us snaps, when all social constraints are abandoned and our spirits are liberated to express our hidden rage and seek bloody revenge. It is a wild ride, visually exciting, full of imaginative twists, and not a breath of the script is wasted.

more…

Franco Ferrarini: Film Review ‘Still Alice’

13 Apr, 15 | by Ayesha Ahmad

Alice Howland (Julianne Moore) is a good-looking fifty-year-old successful professor of linguistics; her loving husband (Alec Baldwin) is a brilliant research physician, she has three beautiful children, a brownstone in the Upper West side and a house at the Hamptons. This is the perfect stage for an impending disaster; in fact after some episodes of forgetfulness, a medical work-up gives the disaster a name: early-onset familial Alzheimer’s disease. From then on directors Richard Glatzer and Wash Westmoreland depict the relentless downhill course of the disease, sparing the viewer only its excruciating terminal stages.

more…

Ayesha Ahmad: Maslaha Workshop for Medical Students: Practical implications of working with diverse communities

1 Apr, 15 | by Ayesha Ahmad

Narrative is an increasingly potent concept for medical educators; developed as a tool to un-cover the patient experience as well as to illustrate the nuances where empathy has a place to fill the gap between the patient and their doctor.

Medical humanities, then, has an integral role for students learning how to become a doctor; and not just merely a doctor; but ‘Tomorrow’s Doctor’ as envisioned by the General Medical Council.

Narratives require that there is space especially within the clinical encounter to be expressed and received. Of course, medical practice elicits narratives containing some of the most significant elements of the human condition. As well as the narratives being diverse encompassing different beliefs surrounding the meaning of life, death, illness, and health, then, so are the narrators. This means that it is necessary for doctors to be trained in perceiving and receiving another person’s story. This is a moral endeavour and also one of justice in the context of a healthcare system that is based on equality and non-discrimination.

more…

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.

Medicine Unboxed: Students 2015 – An Invitation to Participate

24 Mar, 15 | by Deborah Bowman

Medicine Unboxed: Students 2015 – Call for Participation

 

Medicine Unboxed aims to inspire debate and cultural change in healthcare. Medicine today exists at a time of extraordinary scientific knowledge and therapeutic possibility but faces challenging moral, political and social questions. Medicine Unboxed engages the general public and healthcare audiences with a view of medicine that points to human experience, ethical reflection and political debate alongside scientific achievement. We believe the arts can illuminate this perspective, inspire conversation on the values implicit to good medicine and foster a sense of awe and wonder. Our annual events – Unboxed (2009), Stories (2010), Values (2011), Belief (2012), Voice (2013) and Frontiers (2014) – attract audiences of over 300 people, and draw writers, politicians, philosophers, musicians, performers, theologians and artists into dialogue with clinicians and patients. These events are theatrical, moving and challenging. Our event this year, on 21-22 November in Cheltenham, explores Mortality.

 

Now in its third year, the Medicine Unboxed: Students event brings students of the arts, health and medicine together to share, explore and converse, drawing on the unique perspective and experience of being a student or in the early stages of a profession. Medicine Unboxed: Students 2015 takes place on the afternoon of Friday 20th November and we are seeking proposals for participation in this event and to be interns for Mortality.

 

Medicine Unboxed thrives on diversity and inclusivity. We are particularly keen to welcome students (undergraduate or postgraduate) from all backgrounds, including (but not limited to) art, drama, music, medicine, literary studies, philosophy and allied health subjects. You can submit a proposal in one of four broad categories:

 

  1. Provocations and Debates– proposals are likely to focus on a contested aspect of health, illness and its treatment and/or to explicitly engage with multiple points of view;
  2. Exhibitions and Performance– submissions in this category are likely to be creative e.g. poetry readings, monologues, excerpts from plays, creative writing, musical performances, stand-up comedy, art exhibits, short films etc.
  3. Workshops and Interaction– proposals may include experiential activities such as drawing, creative writing, singing and voice activities, improvisation etc or an interactive approach to a question or concept.
  4. Conversations– submissions in this category are likely to take the form of short papers or prompt material presented to, and discussed with, the audience.

 

Proposals may be from individuals or groups. They should be no longer than 500 words and include the i) title, ii) format, iii) names and affiliations of the people involved and iv) a summary of the contribution proposed. You should also indicate in which category you would like your proposal to be considered.

 

Please email your proposal by 6 July 2015 to Dr. Sam Guglani (sam@medicineunboxed.org). All proposals will be reviewed by the advisory group for Medicine Unboxed: Students and decisions will be communicated by 20 July 2015. 8 winning entries will be selected to present at Medicine Unboxed: Students (20th November 2015) and to act as interns for Mortality (21-22 November 2015) with travel and accommodation for the weekend included as part of the award.

 

 

Follow:             @medicineunboxed and @MUstudents

Explore:           http://mustudents.wordpress.com/ and http://medicineunboxed.org

Join:                 https://www.facebook.com/groups/175072369272118/?fref=ts

Mail list:          https://www.facebook.com/medicineunboxed/app_100265896690345

 

 

ePatients: The Medical, Ethical and Legal Repercussions of Blogging and Micro-Blogging Experiences of Illness and Disease – Call for Papers and Conference Details

22 Mar, 15 | by Deborah Bowman

Queen’s University Belfast, 11-12 September 2015 Call for Papers

Referring to the growth of online patient-initiated resources, including medical blogs, the BMJ noted in a 2004 editorial that we were witnessing ‘the most important technocultural medical revolution of the past century’. Ten years later, the controversy caused by Bill Keller’s opinion piece in the New York Times (‘Heroic Measures’, January 2014) and a blogpost on the Guardian US website criticising Lisa Bonchek Adams’s decision to tweet her experience of breast cancer, remind us of the ongoing sensitivities surrounding online patient narratives and the complex relationship between the world of medicine and social media. Emma Keller, the freelance journalist (and wife of Bill Keller) who questioned Adams’s use of twitter to discuss terminal illness, wrote the following: ‘Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies? Why am I so obsessed?’ Adams, in emails to the Guardian, said that the column was ‘callous’ in its treatment of her and noted that the blogpost was riddled with inaccuracies and quoted a private direct message without permission.

As debates on the ethics, dynamics and even legal repercussions of online patient narratives become more prevalent, an international, interdisciplinary conference at Queen’s University Belfast, hosted by the Health Humanities Project Research Group at the Institute for Collaborative Research in the Humanities, will focus on how those with life-threatening or incurable illness use social media, as well as the medical, ethical and potential legal consequences of online accounts of pain, suffering and the clinical experience. We welcome paper proposals dealing with ePatient accounts from a variety of countries and cultures which address the following questions:

  •   What does the rise in social media (“web 2.0”) participation by patients tell us about the ways in which the growing influence of e-patients is challenging the power structures of traditional healthcare and, as a result, proving contentious?
  •   In what ways might social media narratives of illness be seen as a useful source of information for medics? What, conversely, are their limitations?
  •   How do patients influence their online followers, and vice-versa?
  •   What are the ethical issues involved in documenting ‘the public deathbed’?
  •   What are the potential legal consequences of publicly chronicling the clinical experience?

250-word proposals for 20-minute papers (or three-paper panels), in English, should be sent to Dr Steven Wilson by email attachment at the following address: steven.wilson@qub.ac.uk. The deadline for receipt of proposals is Friday 3 April 2015.

Art in Arthritis by Nancy Merridew

22 Mar, 15 | by BMJ

 

 

I called Marco from the waiting room.

 

Everyone looked waxen under the fluorescent lights of Rheumatology Clinic. His olive skin looked grey. He rose like a grapevine on the trellis – thickset but gnarled through the seasons.

 

Marco helped his wife with her handbag and they walked together. Her gait was robust; his was antalgic and unhurried, though slower than he’d have liked.

 

In the consulting room we shared our introductions. I explained that I was aware of his medical history and asked “what are your biggest joint troubles today?”

 

Marco’s molten voice was rounded with a beautiful Italian accent and 80 years of life.

 

Apologising in fluent English Marco said that he didn’t speak English well and that it’s important to “talk the talk” of the doctors.

 

He looked down, reached into a shopping bag, and handed me three sheets of drawings.

 

I was stunned by beauty, utility, and clarity.

 

Brown ink outlined each picture, backfilled with camel watercolour. One image revealed the face of a younger man and the muscular shoulders of youth – his mind’s eye self-portrait.

 

Marco nodded to confirm that he had drawn them all.

 

Each drawing was anatomically correct and swelled from the parchment like parts of an amputee ghost. In some, his bones were bare. In others Marco had blended superficial features of skin with deeper structures of the appendicular skeleton.

 

A left hand floated on one page, like Adam’s in his Creation on the Sistine Chapel ceiling. Words – “Pain here” and “Here too” – were anchored by lines drawn to the hand, portraying metacarpophalangeal and proximal interphalangeal pain.

 

Figure.1_Hand.Shoulder_BMJ

Figure 1. Annotated drawings of right shoulder, face, and left hand:

  • “Pain here” [SHOULDER]
  • “Pain here” [5th METACARPOPHALANGEAL JOINT]
  • “Here too” [2nd METACARPOPHALANGEAL JOINT]
  • “Pain here” [FINGER]

 

Six weeks earlier a rheumatologist had diagnosed Marco with recurrence of polymyalgia rheumatica, with shoulder and small joint features, and with a possible component of new onset rheumatoid arthritis. Recurrent carpal tunnel syndrome was diagnosed in his right hand.

 

On the other pages Marco had drawn his hips, knees, and feet, and annotated their aches with cursive writing.

 

These bones it seems that they are coming apart. When I walk for about ¾ of an hour then it start to give pain. Swells up and gets quite hot. The knee.

 

Figure.2_Knee.Foot_BMJ

Figure 2. Annotated drawings of foot and knee:

  • “Pain here especially at night.” [KNEE]
  • “These bones it seems that they are comming (sic) apart. When I walk for about ¾ of an hour then it start (sic) to give pain. Swells up and gets quite hot. The knee.” [KNEE; TIBIOFIBULAR JOINT]
  • “Pain here last for days on both feet. Not all the time” [TALUS]

 

Marco was seen in the hospital’s Orthopaedic Clinic for severe osteoarthritis of his knees.

 

A carpenter, who still bent those knees to work, Marco explained that he once did a Fine Arts degree to support his business. Beyond that expertise, his careful handling of the autographed pictures revealed an artist.

 

The edge of one page cut through the word “foot” at “foo” which perhaps reflected Marco’s life.

 

Born during the Great Depression he was of the frugal generation – practical, resourceful, industrious. I wondered if Marco had ever rationed paper as a luxury, each sheet precious and saved for handsome cabinet designs.

 

Perhaps as an artist, unwilling to share flaws, he had cropped a larger page of sketches.

 

Figure.3_Hip.Foot_BMJ

Figure 3. Annotated drawings of right foot, pelvis and right lower limb:

  • “Both feet hurt at times” [FOOT]
  • “Pain in here sometimes not all the time” [HIP JOINTS BILATERALLY]
  • “Right leg. Pain here” [FEMORAL HEAD, TIBIAL PLATEAU]

 

I was enthralled.

 

Marco’s eyes danced like bubbles from the surface of Prosecco – the muted pleasure of artistic pride.

 

Already he had offered his pictures to me three times as a gift.

 

Yet I had declined as it seemed too generous. I thanked Marco and encouraged him to keep bringing the drawings to appointments given their clinical value.

 

I completed the history.

 

Marco’s main concerns were steroid-related weight gain, although his arthralgia had improved.

 

As he talked I noticed subdued hand gestures. Given his Italian heritage, perhaps Marco suffered a cultural version of locked-in syndrome from the pain that restricted his upper limbs.

 

After completing the physical examination, I liaised with my registrar about Marco’s clinical plan. In a makeshift gallery behind the consulting suites I showed his artworks to the rheumatologists.

 

They advised that I could keep the pictures, and to take photocopies for the medical record. I made an extra copy either for me or for his art portfolio.

 

I returned to the clinic room. Marco’s wife, who had been silent, was keen to hear the consultants’ opinions of his drawings.

 

She beamed on learning that they were unanimously said to be “the most beautiful ever seen in clinic”, and particularly enjoyed by the Head Professor of Rheumatology.

 

Again Marco offered his pictures and this time I accepted with delight.

 

Smiling, he received his own copies as I explained his treatment changes and follow-up plan. We shook hands. Those aching hands created beauty and conveyed exceptional insights.

 

I watched as he left with his wife and wondered about their lives, leaving Italy to bring their charisma to Melbourne.

 

Two days later I framed the drawings – an exquisite medical document and gift. They hang in my home and evoke Marco’s grace, eloquence, and vitality.

 

* * *

 

Acknowledgements and Postscript

 

Marco, a pseudonym, has consented to the release of his artworks for the purposes of this article. See Figures 1, 2, and 3. Sincere thanks to the patient for his generosity and insights.

 

Thanks to Dr Thomas Lawson Haskell BMBS for his excellent photography of the drawings.

 

Correspondence: Dr Nancy Louisa Gwen Merridew BA BSc MBBS DTMH

Basic Physician Trainee, Launceston General Hospital

PO Box 1328, Launceston, Tasmania, Australia 7250

Nancy.Merridew@gmail.com

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