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The Reading Room: The Other Side of Silence

20 May, 16 | by cquigley

 

The Other Side of Silence_CMYK_cropped

The Other Side of Silence: A Psychiatrist’s Memoir of Depression by Linda Gask.

Vie Books, 2015

Reviewed by Dr Lilian Hickey

There is a shocking, but humane and tender poetry in George Eliot’s lines in Middlemarch which refer to the deafening ‘roar’ of life that might lie ‘on the other side of silence’ in our ordinary day-to-day emotional experiences –  if we only had ears to hear it (or the courage to bear it). We humans spare ourselves, Eliot says, by securely, routinely, tuning out from awareness of the more unmanageable aspects of life – for our sanity’s sake (‘wadding’ ourselves in ‘stupidity’).

Linda Gask takes some of these words of Eliot’s for the title of her memoir, which has a fierce, tenacious, calm and utterly generous sense of commitment in her remarkably frank account of that potentially overwhelming ‘roar’, both in her own life, but also in her accounts of many of her patients’ lives from her long career. Her book sets out to help others through her very personal account of a life beset by periods of severe depression, as well as by episodes of disabling anxiety, difficult obsessional ruminations and even paranoia. Her professional life as an esteemed psychiatrist, researcher and educator has been deeply, tacitly informed by her awareness of her own fragilities, which have included times of almost suicidal desperation, and her story is a compelling one of love, loss, betrayal, kindness, hope and dedication. (And also, tellingly, of some very kind and good doctoring and therapy, hers and others’, along the way)

The bedrock of her memoir rests, as most lives tend to, in the matrix of her childhood experiences, which she brings to life in simple, vivid, often unhappy, detail. Her labouring father always had oil-stained hands, from long and dangerous hours spent tending to the workings of a funfair ride…his determined and passionate nature has been passed down to his only daughter, who adored him.  She can see how she has become her father’s daughter, and benefited from his ambition for her. His later rages, sometimes violent in her adolescence, and his sudden death while she is in Edinburgh working as a house officer, are for a long time impossible for her to take in. It is years later with the help of her first therapist that she begins to make sense of her relationship with her father and what his loss has meant. (Though she says she can never be sure exactly how proud he might have been of her achievements, praise and pride were not in the family behavioural lexicon). Her relentlessly unhappy, critical, jealous mother is cold and ever-unappeasable, but in the book, the lack of warm maternal care seems especially hard to place – if not describe – in the origins and seams of her very real childhood, and then adult, distress. Perhaps the great tragedy of her family unhappiness however lay in the persistent, mostly silent, tormented obsessive compulsive illness of her younger brother, whose later apparently ineffective psychiatric care is described. The lack of any help or support for his childhood torment and its deeply devastating effect on family life,  seem to have been important factors in her later coming to find in psychiatry a place where she could become the sort of doctor who could bear to hear and think about the roaring of despair.

Gask’s childhood sensitivities to unspoken emotional weathers, and to the fears and distress of others, bring to her professional life a capacity for concern, clear sighted clinical observation and an ability to attend to, and be concerned about, troubled states of mind.  The book is also, amongst its chapters, a reminder of the stresses of undergraduate medical studies, the pressures of long hours as a junior doctor and of what it can be like to work in neglected, down-at-heels psychiatric facilities. The notion of asylum for those is distress is thought about, and often in her story seems much more in evidence in the kindness of professionals than in the tatty surroundings offered to the mentally ill.

The professionals who make a difference to Gask are described candidly – the kind, the solid, the unreliable, the awkward and the wise. We are reminded that the right psychiatrist or therapist can be an astonishing lifeline on the edge of a mental abyss, and over the years her medical and psychotherapeutic relationships have been essential aspects of her own soul-rescuing in times of dread or confusion.

The book reads both easily and uncontroversially because of the truths it elaborates with quiet honesty and rigour. Its exposition is simple, its creed straightforward – that there are different kinds of depression, that everyone’s experience of mental distress is uniquely theirs in its origins and setting, and that professional kindness and expert unflinching attention matter profoundly. There are different sorts of treatments and some have worked for Gask better than others. That things change – illness and the medical and psychological therapies which help, at different times in life – is a given.

The self and the coordinates of being are tested by depression, but this is a memoir of a life lived with, ultimately, very considerable personal and professional achievement. What is exceptional in this volume is the absolute sanity of its project. It is one of the least mad books on madness imaginable, and it most essentially promotes hopefulness inspite of its tales of real despair and disorientation. It will change the understanding of anyone who has heard the whisper of Eliot’s roar at any point in their lives. Which is, presumably, all of us.

 

 

Lilian Hickey

Consultant in Older Adult Mental Health

Fulbrook Centre

Churchill Hospital

Oxford OX3 7JU.

The Screening Room: a review of the Lebanese film Ghadi

18 May, 16 | by cquigley

Ghadi New Poster

Music overcoming disability –  Ghadi, Lebanon, 2013, directed by Amin Dora

Reviewed by Dr Reem Gaafar, a Sudanese doctor, writer, filmmaker and graphic designer

 

A special screening will take place at the Polish Cultural Centre, 238 King Street, Hammersmith, London W6 0RF, Sapphire Room, 2nd Floor, at 8pm Friday 3rd June 2016. To book tickets khalid.ali@bsuh.nhs.uk

To buy copies of the film, please email eskaff@thetalkies.com

 

Ghadi, a 2013 film from Lebanon tells a poignant story: In a small town called Al Mshakal, there lived a young boy named Leba. Leba had a stutter, and was subjected to bullying and humiliation from his schoolmates, until a mysterious music teacher, Mr. Fawzi moved into town with his piano as well as nightly Mozart recitals. Using music lessons and improvised speech therapy, Mr. Fawzi helped Leba grow out of his stutter. Years later, Leba becomes a music teacher himself. His music attracts his childhood crush Lara into his classroom, and one Sunday afternoon, into his life. Their happy marriage is crowned with two beautiful daughters, but the family’s blissful life is disturbed by the obtrusive local community urging Leba and Lara to try for a baby son. The so-called caring community lived on gossip and backbiting with dishonesty flowing through the cobbled streets like a dark, murky river.

Eventually, a baby boy is conceived, but to the couple’s distress he is expected to be born with special needs. Leba has serious concerns: should the child be born or not? Is it fair to bring such a child into the world? He seeks advice from Mr. Fawzi, his childhood teacher and friend. Mortified by Leba’s doubts, Mr. Fawzi advises him to name the child immediately, to give him a presence, an existence, and the right to live. A few months later, Ghadi is born with Trisomy 21 (Down’s syndrome) becoming the most handsome boy in the neighborhood.

In today’s world of modern technology and advanced medicine, it has become relatively common for a couple to face the impending reality of bringing a ‘different’ child into the world. Basic ultrasound, amniocentesis and chorionic villous sampling can detect as early as 10 weeks a child with congenital and chromosomal anomalies, genetic disorders of metabolism, and various growth abnormalities. First trimester screening for Down’s syndrome has become routine in the developed world (Huang et al, 2015), and screening for anomalies at 18-20 weeks is becoming regular practice in the developing world. The course of action that follows the discovery of an aberration, however, is not at all globally agreed upon.

Many factors – religious, legal, educational, social and others influence the expecting couples’ decision to undertake the screening procedures in the first place, and to continue or terminate the pregnancy. Studies suggest that health professionals are more likely to lean towards termination of abnormal pregnancies than the general lay person (Drake, Reid and Marteau, 1996, Norup, M, 1998), and that a third of women who have a sibling with Down’s syndrome would consider termination if their prenatal screening proved they were carrying a child with chromosomal aneuploidy (Bryant, Hewison and Green, 2004). However, some individuals remain uncertain about terminating a fetus with Down’s syndrome compared to other conditions such as spina bifida and hemophilia (Bell and Stoneman, 2000). Some parents and/or health professionals think it is justified to not provide children with Downs’ syndrome the necessary medical and social care they need. Some families hand over the responsibility of these children’s care to public health systems through adoption (Julian-Reyniar et al, 1995).

On the other hand, advances in medicine and technology are allowing everyone, including the disabled, to live longer and healthier lives. Disability activists are now calling for women to resist the pressure to abort a disabled fetus, believing that such acts oppress the rights of the disabled, as well as adversely affecting all women (Saxton, M. and Davis, L., 2013).

While prenatal screening is being increasingly offered in the Middle East, the attitudes of both lay people and doctors are still unknown concerning abortion in general, and aborting a potentially-disabled fetus in particular. It is to be expected that these attitudes are based on cultural and religious beliefs and the laws that govern them. The Middle East and North Africa (MENA) region is predominantly Muslim, and the local laws rely heavily on the different interpretations of Islamic ruling in this matter, as well as on those laws inherited from colonial times. Abortion laws range from liberal to very restrictive, but the position of selective abortion relating to Down’s syndrome is not at all clear. Only Tunisia and Turkey have laws that allow abortion without restriction based on underlying reason (Dabash, R and Roudi-Fahmi, F, 2008, Hessini, L, 2007).

Ghadi spends his days and nights at the family’s home singing his peculiar songs, irritating the neighbourhood even more than Mr. Fawzi’s Mozart recitals used to. Eventually, Leba is faced with an ultimatum: either to send Ghadi to a specialist institution, or face the prospect of eviction with his family from their hometown. Desperate for a way out, Leba, helped by the village outcasts, succeeds in conjuring an elaborate plan to convince everyone that Ghadi is an ‘angel’ who can grant local people their wishes and punish them for their sins. In an unexpected twist of events, the townsfolk transform into honest, law-abiding citizens in fear of the wrath of ‘Ghadi, the angel’.

The film suggests that in spite of Leba’s initial apprehension and the community’s rejection of Ghadi, the pro-life decision for children with special needs ultimately turns out to be the correct and rewarding decision for all. Down’s syndrome is now officially recognized globally with a whole week dedicated annually to increasing awareness.

Special thanks to Amin Dora and Elyssa Skaff for kindly facilitating this review.

Address for correspondence: gaafar.reem@outlook.com

References

Bell, M. and Stoneman, Z.  (2000). Reactions to Prenatal Testing: Reflection of Religiosity and Attitudes Toward Abortion and People With Disabilities. American Journal on Mental Retardation: January 2000, Vol. 105, No. 1, pp. 1-13.

Bryant, L., Hewison, JD and Green, M., (2005). Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down’s syndrome. Journal of Reproductive and Infant Psychology, Volume 23Issue 2, 2005, pg. 181 – 198, DOI: 10.1080/02646830500129214

Dabash, R and Roudi-Fahmi, F., (2008). Abortion in the Middle East and North Africa. Population Reference Bureau, USA. Online, available at

http://gynuity.org/resources/read/abortion-in-the-middle-east-and-north-africa-en/

Drake, H., Reid, M. and Marteau, T. (1996). Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clinical Genetics, 49: 134–140. doi: 10.1111/j.1399-0004.1996.tb03272.x

Hessini, L., 2007. Abortion and Islam: policies and practice in the Middle-East and North Africa. Reproductive Health Matters, vol. 15, no. 29, pg. 74-84

Huang, T., Dennis, A., Meschino, W., Rashid, S., Mak-Tam, E. and Cuckle, H., (2015). First trimester screening for Down syndrome using nuchal translucency, maternal serum pregnancy-associated plasma protein A, free-β human chorionic gonadotrophin, placental growth factor, and α-fetoprotein. Prenatal Diagnosis, Vol 35, pg. 709 – 716, DOI: 10.1002/pd.4597

Julian-Reynier, C., Aurran, Y., Dumaret, A., Maron, A., Chabal, F. Giraud, F. and Aymé S, 1995. Attitudes towards Down’s syndrome: follow up of a cohort of 280 cases. J Med Genet 1995;32:597-599 doi:10.1136/jmg.32.8.597

Norup, M. (1998), Attitudes towards abortion among physicians working at obstetrical and paediatric departments in Denmark. Prenat. Diagn., 18: 273–280. doi: 10.1002/(SICI)1097-0223(199803)18:3<273::AID-PD256>3.0.CO;2-5

Saxton, M. and Davis, L., (2013). Disability rights and selective abortion. Chapter 7: The disability studies reader, pg. 87 – 99. 4th edition, Routledge, New York USA

Medicine Unboxed: Students 2016

17 May, 16 | by cquigley

 

Deadline: Midnight Sunday 3 July 2016


Medicine Unboxed 2016 is on the theme of Wonder and takes place in Cheltenham on 19-20 November 2016.


Medicine Unboxed: Students brings together students of the arts, health and medicine to present their work and thinking at Medicine Unboxed.

Applications are invited for a 10-minute presentation at Medicine Unboxed: Students 2016.

Applications are open to undergraduate or postgraduate students from all backgrounds, including art, drama, music, medicine, literary studies, philosophy and other health-related subjects. Previous presentations have included conversations and debate, performances, storytelling, dance and comedy, workshops and film.

The application should be around 500 words long and include: i) Title, ii) Format, iii) Presenters names, iv) Contact email & phone number, v) Educational institution and subject being studied.

The advisory group will review all applications and will let you know if you have been selected by 25 July 2016.

From the applications received five people will be selected who, in addition to presenting at Medicine Unboxed: Students, will work with Medicine Unboxed as interns for two days helping to set up and support the delivery of Medicine Unboxed: Wonder. Interns are provided with accommodation and travel expenses and are invited to a creative writing workshop with Professor Tiffany Atkinson.


Applications
sam@medicineunboxed.org

Enquiries
lucy@medicineunboxed.org
sarah@medicineunboxed.org

Follow
@MUstudents

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

http://mustudents.wordpress.com 

http://medicineunboxed.org

Art, Life and Illness

16 May, 16 | by cquigley

 

David Marron: Encounters

 

Columba Quigley

GV Art London, David Marron, Geras 3, 2013, charcoal and acrylic on board, 60 x 42cm

David Marron, Geras 3, 2013. Image courtesy of the artist and GV Art, London

I was fortunate to catch this exhibition, held over the May Bank Holiday weekend at Lumen Studios, The Crypt, St John on Bethnal Green.

David Marron is both an artist and a paramedic.

The exhibition consisted of 12 pieces, charcoal, acrylic and collage on paper, standing on and supported by crutches.

These are multi-layered and complex works. As you stand before each, more unfolds with every moment of prolonged gaze.

Marron’s probing work is steeped in the essence of humanness, in the complexity, vulnerability and fragility of life itself and of those who inhabit it.

The artist’s experience as a paramedic affords him a unique viewpoint – that liminal space that he witnesses between wellness and illness, between living and dying, where life is suspended and where outcome is often unknown.

Following the exhibition, I had the opportunity to chat to Marron about his work. Initially trained in fine art, his working life brought him to the world of hospitals and the unwell. This witnessing, of the transformations and experiences of illness, changed the nature of Marron’s art. Previously, he reflects, his work had been more self-obsessed. Becoming part of the world of illness transported him away from a more personal interior world and towards a consideration of that of others.

In his work as a paramedic, Marron might only spend very short periods of time with patients on their journey to hospital. The encounters that moved him emotionally resulted in a transmutation of the feelings such interactions generated into the drawings on display. Yet each piece does not represent a single encounter or a specific individual, but is rather a conflation of a number of similar emotional experiences.

The piece Run Away Robin, for example, is not a direct portrait but was informed by a number of encounters with patients suffering from dementia. The piece represents a piecing together of the emotional fragments that Marron took away from such interactions: the nobility and stoicism that accompany the manner in which the elderly deal with memory loss; the masks they create, often using obstinacy and non compliance to hide their fears; and the fragmentation of self that accompanies the condition, here seen by the snippets of repeated words that hold meaning to the utterer even if uninterpretable by us.

 

GV Art London, David Marron, Run away Robin, 2015, charcoal and acrylic on paper, 84 x 59cm

David Marron, Run away Robin, 2015. Image courtesy of the artist and GV Art, London

A Tooth for a Tooth reminded me of Munch’s The Scream – that primordial sense of pain and anguish, seemingly uncommunicable in its silence. Any yet not, as we confront the distress so vividly here on canvas. The violence of this lived experience is hard to bear witness to, and yet there is so much tenderness in the lines that Marron draws to communicate this emotion that we rest our gaze and stay with the sufferer.

GV Art London, David Marron, A Tooth for a Tooth, 2014-15, Charcoal, acrylic and collage on paper, 84 x 59cm

David Marron, A Tooth for a Tooth, 2014-15. Image courtesy of the artist and GV Art, London

Marron is unafraid to share the challenges and pathos of the lived experience, witnessing it acutely as a paramedic. Yet his work also celebrates life throughout, most notably in Fentanyl Dreams, which vividly communicates the force of the newly born.

GV Art London, David Marron, Fentanyl Dreams, 2012-14, Charcoal, acrylic and collage on paper, 84 x 59cm

David Marron, Fentanyl Dreams, 2012-14. Image courtesy of the artist and GV Art, London

Marron is also a sculptor. However, for the works and themes presented in Encounters, drawing for the artist facilitated a unique truth and directness. He works quickly. Once inspired, the initial charcoal drawing is ready within 3-4 hours. Structures are built around this draft, followed by revisions. The sense of speed involved in their creation imbues the pieces with much energy and a less calculated finished product.

The exhibition also includes a video, En Route, which takes you on a journey through London, a horizontal view from within an ambulance. Buildings and sky whizz by, the world outside continuing and ignorant of what is happening inside the vehicle and within the world of the ill. The poem Ambulances by Philip Larkin came to mind:

‘Closed like confessionals, they thread

Loud noons of cities, giving back

None of the glances they absorb.

Light glossy grey, arms on a plaque,

They come to rest at any kerb:

All streets in time are visited.’

 

The poem ends:

‘Unreachable inside a room

The traffic parts to let go by

Brings closer what is left to come,

And dulls to distance all we are.’

from Ambulances, by Philip Larkin.

 

Our fragility, vulnerability, finiteness – further exemplified by the works being mounted on crutches – are clearly evidenced in Marron’s work, and are so beautifully communicated with much tenderness and compassion.

 

http://www.davidmarron.com

GV Art London, curators, producers & artist agent, represents David Marron amongst others.

 

The Screening Room: Cannes Film Festival Preview

11 May, 16 | by cquigley

 

Cannes, films and Medicine

The forthcoming Cannes Film Festival (11-22nd May 2016) is described by its director Thierry Fremaux as ‘A celebration of cinematographic art’ http://www.festival-cannes.fr/en.html. If you are lucky enough to be attending the glittering, entertaining and thought-provoking extravaganza, here are five films in the official selection exploring the lives of patients and doctors in extremis.

First is Jean-Pierre and Luc Dardenne’s ‘The unknown girl’ reflecting on the professional and moral dilemma a doctor faces after a young girl she refused to admit to hospital, dies in suspicious circumstances. A man’s existential crisis at the face of terminal illness is the focus of Xavier Dolan’s ‘It’s only the end of the world’. The turbulent life of international relief doctors surviving daily humanitarian catastrophes is the subject of Sean Penn’s ‘The last face’.  The private life of a neurologist going through a mid-life crisis and the complicated relationships with his wife, and family are dissected in ‘Sierra-nevada’ directed by Cristi Puiu. ‘I, Daniel Blake’, the new film from Ken Loach delves into the substantial divide between health and social care faced by a carpenter who falls ill, and struggles to navigate the bewildering world of welfare support. Showcasing films from Belgium, Canada, USA, Romania, and the UK respectively, the above films offer a rich cinematic experience that embodies the ever growing bonds between medicine and humanities.

 

Address for correspondence: Dr Khalid Ali, Screening Room editor, Khalid.ali@bsuh.nhs.uk

The Reading Room: When Breath Becomes Air

9 May, 16 | by cquigley

 

Hope, Oncology and Death

Seamus O’Mahony

 

When Breath Becomes Air by Paul Kalanithi. London: The Bodely Head, 2016.

image1

Paul Kalanithi was nearing the end of his neurosurgical training at Stanford when aged thirty-six, he was diagnosed with stage IV lung cancer. He had never smoked. He was referred to an oncologist specializing in lung cancer. “Emma Hayward” – not her real name – is a central figure in his posthumously-published memoir When Breath Become Air. At their first consultation, Emma refused to discuss survival statistics for stage IV lung cancer, but encouraged Kalanithi to return to work as a surgeon. I shared Kalanithi’s initial reaction: “Go back to work? What is she talking about? Is she delusional?” He argues that for the patient, cancer survival statistics are of little help or succour: “It occurred to me that my relationship with statistics changed as soon as I became one . . . Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

But statistics and probability were important for Kalanithi. Examining his options, he reasoned: “Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases.” After an initial encouraging response to chemotherapy, his oncologist is wildly optimistic:

Going over the images with me, Emma said, “I don’t know how long you’ve got, but I will say this: the patient I saw just before you today has been on Tarceva for seven years without a problem. You’ve still got a ways to go before we’re that comfortable with your cancer. But looking at you, thinking about ten years is not crazy.”

As it turned out, Kalanithi survived for twenty-two months following his diagnosis, some distance short of ten years. Encouraged by his oncologist’s optimism, as well as Samuel Beckett’s famous exhortation (“I can’t go on. I’ll go on”), he returned to work as a surgeon: “One part of me exulted at the prospect of ten years. Another part wished she’d said, “Going back to being a neurosurgeon is crazy for you – pick something easier.”” Returning to the operating theatre, he had to lie down during his first case, but “over the next couple of weeks, my strength continued to improve, as did my fluency and technique.” Soon, however, the stark reality of his disease caught up with him:

But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl into bed . . .

Inevitably, as his disease progressed, he knew he could no longer work as a surgeon. When a CT scan showed that his disease was advancing again, “Emma Hayward” managed to put a defiant, Churchillian spin on the situation:

“This is not the end,” she said, a line she must have used a thousand times – after all, did I not use similar speeches to my own patients? – to those seeking impossible answers. “Or even the beginning of the end. This is just the end of the beginning.”

And I felt better.

On the day he was due to attend the graduation ceremony from his residency program, Kalanithi was taken suddenly ill, and ended up in the Intensive Care Unit, where various specialists, including nephrologists, endocrinologists, intensivists and gastroenterologists squabbled over his treatment. Kalanithi refers to this as “the WICOS problem” – Who Is the Captain Of the Ship? Emma – who had been away on holiday – returned, and took over the role of captain. Having pulled her patient through this crisis, she reverted to her relentless optimism: “” You have five good years left,” she said.” Kalanithi, however, saw this wishful, magical thinking for what it was: “She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea.” He is remarkably forgiving of this fudging and fibbing, this hesitation to be brave:

There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss. Doctors, it turns out, need hope too.

“Emma Hayward”, like many American oncologists, is part conventional cancer doctor, part shaman. She seems to have been able to simultaneously believe two truths. The conventional cancer doctor part of her surely knew that Kalanithi was, at that point in his illness, unlikely to survive five months, let alone five years, yet the shaman part of her half believed the lie she was telling her patient and herself. Her no doubt well-intentioned exaggeration of Kalanithi’s survival prospects led him to take the ill-advised decision to go back to work as a surgeon, when his remaining time might have been more fruitfully spent with his family and his books.

Kalanithi muses on the nature of hope in terminal illness:

When I talked about hope, then, did I really mean “Leave some room for un-founded desire?” No. . . So did I mean “Leave some room for a statistically improbable but still plausible outcome – a survival just above the measured 95 percent confidence interval.” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

Atul Gawande wrote how the entire edifice of American cancer treatment is based on the assumption that all patients with advanced cancer are in the small, statistically favoured end of the bell-curve, the medical equivalent, he observed, “of handing out lottery tickets.” Cancer patients are routinely treated on this assumption (or hope), but are not prepared for an outcome – death −  which is overwhelmingly more likely. Optimists would cite the example of the palaeontologist and writer Stephen Jay Gould, and his famous essay, The Median is not the Message. Diagnosed with a rare form of cancer (primary peritoneal mesothelioma), Gould looked up the survival statistics, and found the median survival was just eight months. He noticed, however, that the survival bell-curve was not symmetrical, that it was right-skewed, with a small minority of long-term survivors. Gould reasoned that he might just be in this small minority: “I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment.” He was right: he survived for twenty years, dying of an unrelated cancer. I would imagine that this essay is holy scripture for American oncologists.

I am, I confess, an oncology apostate. Cancer treatment seems to offer some patients a toxic combination of false hopes and a bad death. And the oncology community itself acknowledges this. The Lancet Oncology Commission produced a  lengthy report in 2011 called Delivering Affordable Cancer Care in Developed Countries : “The medical profession and the health-care industry have created unrealistic expectations of arrest of disease and death. This set of expectations allows inappropriate application of relatively ineffective therapies . . . cancer treatment is becoming a culture of excess.”

Can we give our patients hope, yet still be honest with them? “Hope” has acquired a very narrow meaning in the cancer setting, namely, an expectation of long-term survival. But for our patients, hope can mean all sorts of things: a reassurance that they will not suffer unbearably, an opportunity to settle affairs and spend time with family, a sure knowledge that their doctor will accompany them on the road as an amicus mortis. Giving hope does not mean creating an atmosphere of histrionic pretence, an atmosphere which inevitably explodes as the end nears. Hope and honesty are not incompatible.

Unfortunately, honesty is heavily disincentivized in modern medicine. A study published in the New England Journal of Medicine in 2012 found that the less patients with advanced cancer knew about their prognosis, the happier they were with their doctors. Nearly all families, and many patients, prefer the Lie. Although he eventually realized that his oncologist was telling him what she thought he wanted to hear, Paul Kalanithi believed in, and acted on, her initial over-optimistic prognosis. If a  man as well-informed and intelligent as Kalanithi could buy the well-intentioned Lie, what hope for the “ordinary” patient?

 

Seamus O’Mahony’s book The Way We Die Now was published on May 5 by Head of Zeus.

 

A little Danish mermaid and other stories (of rare diseases)

7 May, 16 | by cquigley

 

 

A reflection on Sofie Layton’s Under the Microscope by Giovanni Biglino (Bristol Heart Institute, Bristol, UK)

 

The voice of a little girl and the sunlight filtering through layers of green batik – a series of coral-like structures representing real heart models displayed under bell jars – anatomical drawings – and the story of a boy’s heart transplant…

With her ambitious piece Under the Microscope, artist Sofie Layton has created two powerful installations, both rich in imagery and charged with people’s voices, during a yearlong residency at Great Ormond Street Hospital for Children in London.

The artwork aims to explore how patients and families process medical information, particularly in the context of rare diseases. Layton’s delicate rendition manages to achieve the aim and to go beyond, in a moving exploration that encapsulates the technicalities of scientific research around rare diseases as well as the strength of young people that are born with these conditions.

The installations focus on two different medical scenarios. In isolation is centered on severe combined immunodeficiency (SCID), whilst Making the invisible visible explores congenital heart disease.

The first recreates an isolation tent, made out of fluttering green/yellow batiks on which the artist has printed golden and silver viruses. Inside the tent, there is a bed, and a touching soundscape in which three voices alternate: a young Danish girl that candidly speaks about her growing up with SCID and the treatment she has received in the hospital; an immunology specialist discussing the condition; and the artist herself reading excerpts of H. C. Andersen’s Little Mermaid. The tent’s fabric suddenly transforms into a sea. The artist reads a bedtime story to the girl and tells us about transformation after treatment.

FIGURE 1

Figure 1: Visitors sitting on the bed inside the isolation tent.

The second is a powerful presentation of different facets of congenital heart disease – its shape, its frailty, its treatment, its narrative. The piece mixes 3D printed models, set on a steel table, with large silk panels on which the journey of a patient is symbolized in its phases, from anatomy to medication to new technologies that can help diagnosis and therapy.

The installations show stylistic links with previous work by Sofie Layton, particularly her piece Bedside manners (Evelina Children Hospital, 2014), which also included a site-specific installation with a bed and a soundscape, her intent clearly that of making the installation as immersive an experience as possible for the viewer. In the current piece, for instance, entering the isolation tent involves wearing latex gloves, a mask and a plastic apron, all of which immediately heighten the awareness of the viewer around the medical issue.

The artist has undoubtedly explored, appropriated and re-elaborated medical language in her process. Viruses’ names are scribbled in a doctor’s hurried handwriting on the fabric of the isolation tent, and language is central to the cardiac-themed piece, with five large silk panels listing congenital lesions, medications, technologies, but also keywords emerging from patients’ stories, all printed in the background of large anatomical drawings that, in turn, dialogue with the 3D anatomical models. Rather than a repetition of technical jargon, this creates an emphasis on the meaning and the power of these words – life-threatening conditions and life-saving medications, there shining on the precious silk backgrounds – technical/anatomical terms mixing with heartfelt imagery from patients’ narratives. Whilst the non-expert viewer would question the meaning of some of these words, the expert viewer would pause and wonder what stories are hidden behind and in between them. The language element is echoed in the soundscape, which opens with a young boy struggling to pronounce “ventricular assist device” (the boy, in real life, has been on mechanical heart support awaiting heart transplant).

FIGURE 2

Figure 2: Language is recurrent throughout the piece, such a name of viruses (left) and of cardiac conditions (bottom right), but also poignant quotations from parents and patients the artist has met during her residency (top right).

Another key element to the artistic research is an interesting exploration (microscopic and macroscopic) of shapes. On the one hand, viruses and cell structures are magnified. On the other hand, the anatomy of the heart and its variations in the presence of congenital lesions are beautifully presented with the use of 2D and 3D representations. The artist looks at the topography of the heart in a separate panel (exhibited in the entrance to Great Ormond Street Hospital), a rather abstract shape of intricate lines, a map, a blueprint of the engine room, but also suggesting other paths and other stories that have crossed. And 2D representations of the anatomy are complemented by the use of 3D models, manufactured from patients’ imaging data. Here the artist allows herself the license of going beyond the engineering aspect of 3D modeling, and includes in the cardiac landscape a small heart cast in bronze, which is suspended inside its bell jar – an evocative and immediate reminder of the preciousness of the organ.

FIGURE 3

Figure 3: A series of anatomical patient-specific models is presented under bell jars, including elements such as the suspended bronze heart (scaled from a medical model).

Layton’s work is exquisite in its layering. There is something rich and soft in the choice of silks. Something organic and fragile about the white 3D models. And a gentle lightness about the batiks of the isolation tent. But Layton’s work is above all exemplary in that is shows how art can be a powerful vehicle for sensitive stories charged with medical significance. The work is not sentimental or condescending and, albeit visually stunning, it does not embellish the pain of the stories it embodies. And equally it is not provocative, it does not intend to make the viewer uncomfortable by facing the complexity of rare diseases and the consequences on people’s lives. The work manages to strike a balance and what emerges, in the end, is a great respect for the humanity of the stories. The stories of patients, of course, but also the stories of their families, of physicians and their medical endeavors, and of researchers and scientists who look under the microscope in their daily practice.

FIGURE 4

Figure 4: Elements of the visual landscape of congenital heart disease. Left: one of five panels representing the journey of a patient, in this case medications, including a representation of a patient’s heart following multiple repairs of congenital lesions. Centre: a piece bringing together the voices of several patients and carers, every metal plate having been embossed by a different person with whom the artist developed a conversation during her residency. Right: representation of the topography of the heart.

The recognized importance of the narrative of illness experiences[1] is clearly central to the artist’s work, but so is the idea of the dialogue. The dialogue that she has had, through her participatory practice, with patients and families during workshops and on the wards of the hospital, over a period of several months. The dialogue that she has also fostered with researchers and clinicians, looking for that language she set out to explore in the first place, entering the lab herself and beginning to look under the microscope. This dialogue is completed with the inclusion of the viewer in the conversation, by means of the immersive nature of the pieces. The installations (both are site-specific for spaces in Great Ormond Street Hospital and the adjacent Institute of Child Health) rely on an array of media, including fabrics, embossed metals, the sculptural 3D models, but also soundscapes. The latter are absolutely integral to the installations and serve to further engage the viewer. Dr Jo Wray, health psychologist and senior research fellow at Great Ormond Street, remarked on the quality of the soundscapes, and how the looping of the recording is able to render the time element of living with rare diseases as something that represents itself day after day after day (for the patient but also for the carer). The viewer is thus included in the conversation and is also invited to look under the microscope. To look at the complexity of this world, crystalized in the technical jargon and juxtaposition of anatomical models – but also at the humanity that emerges so powerfully through the voices and through poetic quotations that the artist has blended in the pieces. “Now don’t suppose that there are only bare white sands at the bottom of the sea. No indeed! The most marvelous trees and flowers grow down there…” (H. C. Andersen)

FIGURE 5

Figure 5: Details of the isolation tent.

 

Note from the author: congenital heart disease is not, strictly speaking, a rare disease; however, some of the lesions depicted in Layton’s work represent cases of complex congenital heart disease and can be considered rare/unique in their anatomical arrangement.

Sofie Layton: http://www.sofielayton.co.uk

Go Create! Great Ormond Street Hospital arts programme: http://www.gosh.nhs.uk/about-us/our-priorities/go-create-arts-programme

Images courtesy of Stephen King. Do not reproduce without permission.

 

[1] Garden R. Who speaks for whom? Health humanities and the ethics of representation. Med Humanit 2015; 41:77-80

The Screening Room: The Aftermath of Stroke

3 May, 16 | by cquigley

 

Building bridges: two films about self-discovery after stroke

Dr Khalid Ali

 

Two recent films portray the aftermaths of stroke from different viewpoints: that of a stroke survivor in My Beautiful Broken Brain (UK 2016, directed Lotje Sodderland and Sophie Anderson, currently showing on Netflix) and that of the daughter of a stroke survivor in You See Me (USA 2015, directed by Linda Brown, available from http://youseememovie.com/).

Linda Brown is a film maker and an Associate Professor at the University of Southern California (USC). After her father Stanley Brown had a stroke in 2004 at the age of 79, she decided to collate her filmed reflections on his stroke experience in a documentary film, You See Me. Another motivation for making the film was her strong desire to get to know her father better as a human being with a traumatic past and unfulfilled dreams. Using family home videos and interviews with her father, mother, and two sisters, she tells a poignant story of a family afflicted by stroke as well as long-hidden secrets. The blood clot that blocked the blood supply to her father’s brain (cerebellum) has affected him in many ways; his physical weaknesses, poor balance, stuttering speech were accompanied by significant behavioral changes characterized by frustration and outbursts of anger. In spite of Stanley’s determination to walk and communicate and restore his relationship with his family, his frequent paranoid delusions and verbal abuse put significant strain and pressure on everybody around him, particularly his long suffering wife. Documenting the turbulent and volatile family life for 12 years after Stanley’s stroke in film became a journey of self-discovery for Linda and her mother. Watching family home movies enabled them both to re-evaluate their relationship with Stanley, and to come to terms with their own uncertainties about his morbid and enigmatic pre-stroke personality. With poignant realism, Stanley’s death circumstances were honestly shared with the audience. However, ‘unexpected salvation and healing’ come in the guise of a never-before-seen family home video.

Following the film screening in several international film festivals, and after winning major awards, The American Heart and Stroke Association (AHSA) supported the film in public campaigns for its honest portrayal of life after stroke, in addition to caregiver burden in old age, domestic violence, and mental health awareness.

In My Beautiful Broken Brain, we see Lotje Sodderland, another film-maker, who had a massive haemorrhagic stroke at the age of 34. Following life-saving brain surgery, she begins to experience a bewildering and confusing reality; visual images are distorted, sounds are exaggerated – a surreal existence that reminds her of ‘the red room’ experience in Twin peaks, her beloved director David Lynch’s infamous TV series from 1990 (https://en.wikipedia.org/wiki/Twin_Peaks). With the help of another film maker, Sophie Anderson, the two embark on a journey of filming Lotje’s demanding speech therapy sessions, her isolating experience in a hospital rehabilitation unit, readjusting to life again, and joining a research study that involving trans-cranial magnetic stimulation for improving speech.

In her strong desire to turn her ordeal into a positive experience, Lotje and Sophie send a videotaped message to David Lynch (https://en.wikipedia.org/wiki/David_Lynch), sharing Lotje’s day-to-day attempts of ‘restoring her old self’. To their surprise, David Lynch replies, expressing his interest in Lotje’s video diaries, and ultimately joining as an executive producer for the film.

Telling her stroke experience as it is without sugar-coating, Lotje says: ‘My life was hijacked by therapists. I am now defined by my impairments’.  How much she scores on stroke-specific assessment scales becomes her daily pre-occupation. Lotje’s story and observations embody the sense of lack of control that many stroke patients experience both in hospital and after discharge. Stroke therapists as ‘dictators’ controlling the stroke survivors’ recovery, and the challenge for survivors moving towards a ‘reluctant democracy’ has been explored in a seminal article by Norris and Kilbride (1).

In spite of the harsh reality of life post-stroke, Lotje slowly discovers and comes to appreciate her hidden strength and her resilience as she reconnects with a new sense of self. The ethos of self-management post stroke is practiced on a daily basis by Lotje, a reminder of the visionary Bridges approach championed by Professor Fiona Jones in the UK (2).

You See Me and My Beautiful Broken Brain show us how living with, and embracing change after stroke can be the key for healing and liberation for both stroke survivors and their families.

 

References

  1. Norris M, Kilbride C. From dictatorship to a reluctant democracy: stroke therapists talking about self-management. Disabil Rehabil 2014; 36 (1): 32-8.
  2. Self-management – Bridges approach  http://www.bridgesselfmanagement.org.uk/

 

Address for correspondence: Dr Khalid Ali, Screening room editor, Khalid.ali@bsuh.nhs.uk

 

 

The Reading Room: ‘Making Medical Knowledge’

25 Apr, 16 | by cquigley

 

Making Medical Knowledge

By Miriam Solomon

Oxford University Press, 2015

 

Reviewed by Dr Jonathan Fuller, University of Toronto

 

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

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

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

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

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

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

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

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

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

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

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

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

 

Acknowledgments

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

 

Funding

Canadian Institutes of Health Research.

References

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

PCMD Medical Humanities Conference 2016

18 Apr, 16 | by cquigley

 

Ian Fussell

Community Sub Dean UEMS

 

In 2002, The Peninsula Medical School (now Peninsular College of Medicine and Dentistry (PCMD)) became the first UK medical school to integrate the medical humanities as core curriculum.

Every year since, year four students engage in a six-month project alongside and mentored by an artist. The culmination of the project is a conference organised by the students displaying and presenting their work.

The work thus created has become increasingly sophisticated over the years, as evidenced by the 2016 conference that just took place in Truro (April 2016). In fact, it was probably the highest quality of work seen to date and would not be out of place at any international medical humanities conference.

The morning session was opened by Professor Alan Bleakly, the current President of the Association for Medical Humanities and a leading world expert in the field. This was a particularly poignant conference as 2016 is the final year that it will be run under the auspices of PCMD following the disaggregation of Exeter and Plymouth Medical Schools. It may have been this, or the unsettled future that the current students are facing, that gave this year’s presentations an extra edge.

Following a superb talk by Alan that encouraged a political voice, we were treated to three songs written and performed by “Dull to Percussion”, a band formed in the “Medical School of Rock” module. The songs were indeed political, satirising the split between the universities and included a protest song aimed squarely at our Health Secretary. Search iTunes or Spotify to listen for yourself, and watch “A Song for a Hunt” go viral.

The day was then jam-packed and it was impossible to experience all that was on offer. The range of skill and talent was breathtaking. We were lectured on the human cost of the western desire for sweetness by students from the anthropology module, and invited to debate “Do Christians make better doctors” by the Christian ethics students. This year a number of new Special Study Units (SSUs) were run. They were also extremely good and included a collaboration with Truro’s Hall for Cornwall team.

The students worked at the theatre, but more impressively wrote a play on mental health in medical students. We were treated to a premiere performance – “Permission to be Human” should be performed at every medical school in the country. There was also a monologue by a shy mature student who helped us understand alcoholism and PTSD in war veterans. The mood was lifted by a hilarious stand up routine; how can dislocating your shoulder be so funny?!

There were a number of writing modules, including poetry. The audience was encouraged to write poems in a short workshop. Another new module was “Writing the Knife”, which generated superb short reflections on memorable clinical incidents. One piece called “Quayside” was outstanding and deservedly won a prize. Read it here https://memorablemedicmoments.wordpress.com/author/memorablemedicmoments/ and add your comments.

There was so much more to the students’ work, and this short piece cannot cover everything. However, I do want to mention a some other excellent pieces: working with clay exploring the professional masks doctors wear; pottery boxes representing the mess that doctors get into as they progress through their careers; moving and uncomfortable films that depicted a child’s journey through a hospital; the doctors strike shown as a frightening political movement; dopamine photography; a project on how we smell; and life drawing in conjunction with Falmouth Art School. At the end of the day we were “kettled” into a small room, and forced to party…

The aim of this SSU is to develop student’s tolerance to ambiguity. But the SSU achieves much more than this: it helps students develop a community of practice; it also fosters development of resilience and peer support; and importantly, the students have fun while exploring other perspectives on life and illness. I am extremely proud of our medical students and feel very privileged to work with them in this way. I hope that both Exeter and Plymouth continue with medical humanities in their developing curricula.

 

 

 

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