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The Man in Bed Five by Jack Garnham

28 Jan, 15 | by BMJ

I go to see the man in bed five.

 

He winks at me. Cracked lips separate to reveal an imperfect set of yellow teeth as a wry smile spreads slowly across his face. It comes with an enormous effort. He looks worse; the burden of disease seems to weigh heavier with each passing hour. Sickness has slowly reshaped him, like an obsessive sculptor continually revising his creation. His wife fiddles nervously with her plain wedding band; I feel his decline, but for her each step in the inexorable march of his illness is devastation. She looks at me, and in her eyes I see a deep love and a profound fear. They have been married for forty years. He tells me about his two children. He loves them. His daughter lives in Australia. He has a dog that he takes for walks on the common. He waves a frail arm towards the trees outside the window and tells me that he is looking forward to going home. In our short time together he has granted me open access to his private world, to the countless unique experiences that conspire to create an individual. I will miss him when he is gone, the man in bed five.

 

This once vibrant character is dulled by his sterile surroundings: the bland hospital gown robs him of his humanity; the peeling walls and filthy windows drain him; plastic tubes run into and out of his body. For a moment the hospital is a colossal parasite, nourished by this wasted figure; it breathes in around me and exhales a fetid breath, content at having shelled the man in bed five.

 

I am protected. My fraying badge and cheap stethoscope defend me. The flimsy chart I hold is my shield. I am part of the profession, this most noble profession, and to hurt is weakness, to feel is fragility. He is his disease; he is a hospital number, a set of laboratory results, a trace on a machine, a faint bleep heard from the nursing station. To watch him break I must stand on the other side of the glass. I bid a clinical farewell to the peculiar collection of observations that was once the man in bed five.

 

One day the faint bleep fades. The rush of clinical medicine devours the mourning period; a different set of observations arrives to occupy the bed, and there are pressing results to chase and urgent investigations to order. He remains in my mind as the hours pass. Is it appropriate to grieve? Would it be easier to succumb to indifference? These were the questions asked of me by the man in bed five. Can you balance compassion with detachment? Can you manage the intolerable pain of regular loss? Can you walk the fine line? I bury these thoughts and continue to work.

 

As finals draw closer I find myself more frequently troubled by these questions.

 

I still have no answers.

 

Correspondence: Jack Garnham, Imperial College, London (jack.garnham09@imperial.ac.uk)

The Reading Room: A review of ‘Jo Spence, The Final Project’

23 Jan, 15 | by cquigley

 

Reviewed by Steven Kenny

 

 cover

Jo Spence, The Final Project, 1991–92. © The Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

 

Jo Spence was a pioneering figure within the realms of photographic discourse, image based political activism and the application of photography as a therapeutic tool. From the early 1970s Spence worked within photographic collaborative modes, first with Terry Dennett to form the Photography Workshop Ltd and later co-establishing the Hackey Flashers and Polysnappers. Spence’s later works turned inwards, directing the gaze towards the body, and specifically her ill/diseased body, and her battles with breast cancer. Such works became charged with a context of survival and transgression, this photography ‘a response to her treatment by the medical establishment and her attempt to navigate its authority through alternative therapies’ (Vasey, s.d).

 

The Final Project is the last documentation of Jo Spence’s work. A book of eerie beauty and macabre investigation, The Final Project stands as the artist’s last photographic output before her death as a result of leukaemia in 1992. The resultant images stand as a testament of confrontation, expectation and spiritual transcendence. Within the book’s inside flap a small quote from Spence provokes thought, ‘“How do you make leukaemia visible? Well, how do you? It’s an impossibility”’. This quote particularly hit home as my uncle also died as a result of leukaemia. At the time I did not understand the condition, only hurt by its ramifications, never truly knowing its pathological effects nor its ability to conceptually redefine the body as sick and the other. The Final Project is a particularly significant book as it highlights the importance of representing the ill body, one that is affected by the invisible and the hidden. Spence’s work depicts a process of struggle, humour and later acceptance during her illness experience.

 

At the end of her career, Spence became too unwell to travel and work. However, the limitations imposed by physical frailty did not stop her determined and strong work ethic. During this time, Spence trawled through her vast photographic archive to create further visual documents from those that make reference to mystic realism. Her output became imbued with the anticipation of death, and as a result the imagery decoded visual artefacts of the iconography of the dead through the layering of two slides, one on top of the other. These objects, once photographed, became talismans of spiritual power, and as Louisa Lee (2013:11) comments, ‘allegorical props for representation’. The skull features consistently throughout The Final Project; in one photograph it engulfs the frame, in another the skull is depicted as a mask to be worn (see front cover above), and in others it appears to be used as an object to physically represent the artist’s presence. The skull is now a contemporary icon, a product of fascination that can be seen across various artistic forms and cultural practices. Her archive takes on its own being, and as a result comes to physically stand in for the artist; her visual history creating new histories that can be once again archived. The photographic montage can thus be seen within the book as a form of catharsis, the constructed image an item of therapeutic power with the ability to define new identities.

Pg-84

Jo Spence, The Final Project, 1991–92. © The Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

 

On examining the work throughout the book, one might conclude that such images may be associated with Sigmund Freud’s theory on the death drive, which explored the apparent conflict between not having knowledge of our inevitable experience of death, and the resurgent repetition of unconscious exploration into gaining such insight. As suggested by the author Maria Walsh (2012), ‘Art can be tied to either of these strands, depending on whether an artwork is on the side of binding the chaotic force of the death drive or repeating its disruptive impulses’. Spence’s work within this series seems to lie preciously between the two, with such works seen as a taming or normalisation of death from acceptance of its iconography, yet becoming entangled within a mode of repetition as images are repeated and spliced with others to form new variations. It must be stressed, however, that such work is not at all chaotic, but is instead peaceful, dreamlike and calmly ambivalent. Thus it becomes difficult to categorise Spence’s final work, also true for her entire lifetime output, which confidently straddles various modes of representation and classification. The work is enigmatic, a photographic force in representing the invisible and redefining the ill body in transgression.

Humour has served as an important emotional device throughout Spence’s career and artistic work, and again is of great importance within The Final Project. Melancholy juxtaposed with laughter creates a darkly humoured conflict, the work’s methodology resembling the artist’s perseverance in contrast to her deteriorating health. Humour is utilised as a concept not only to promote positivism, but also to punctuate the isolation caused by disease. The skull as motif is disseminated as a cryptic symbol of both death itself and of its subsequent control over it. Spence does not trivialise death but instead attempts to seek some comfort and emotional release from its seriousness. As Sheri Klein (2007) suggests, ‘The intent of humour is to overcome the tragic impulse so that life is bearable’. Spence does not give up, nor does she stop creating. Instead, the artist utilises photography as a method to pictorially represent her own transition. The work serves as a form of therapy, much in the same manner as her previous phototherapy work represented her battle with breast cancer. One element has importantly changed, however. Spence now begins to absent herself from the frame, and instead presents her physical self through her previous constructed representations — a body not yet affected by the disease, a historical body that can be manipulated and freely controlled.

How do we come to terms with death? Perhaps more importantly, can we ever come to terms with our own limited physicality? I believe that these are deeply subjective, complex and quite probably impossible questions to answer, but as Klein (2007) suggests ‘Humour from art, as experienced through smiling and laughing, can be a catalyst for personal and collective healing, wellbeing and improved psychological health’. From reviewing the work of Spence, one could conclude that laughter and the ability to poke fun at death might be more therapeutic than resorting to a grief state that solely focuses on inexorable loss.

GRAVEYARDSESSION

Jo Spence, The Final Project, 1991–92. © The Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

 

 

Lee, Louisa (ed.) (2013) Jo Spence: The Final Project. London: Ridinghouse.

 

References

Klein, Sheri (2007) Art and Laughter [Scribd Edition] From: www.scribd.com (Accessed on 13.01.15)

Vasey, George (s.d) Jo Spence – Biography. At: http://www.jospence.org/biography (Accessed on 13.01.15)

 Walsh, Maria (2012) Art and Psychoanalysis [Scribd Edition] From: www.scribd.com (Accessed on 13.01.15)

Physicians and Magicians: A Magical Education in Life, Death, Power, Potions and Defence Against the Dark Arts by Fiona Dogan and Mark Harper

20 Jan, 15 | by BMJ

Abstract

The worlds of magic and medicine both involve the sudden initiation of an intimate relationship between two complete strangers – the magician and their subject, or the doctor and their patient. Magic requires the subject to have some degree of trust in the magician, to accept that props and setting may be required to aid the illusion, and to witness such a high degree of skill that belief in the magician’s ability is sustained once the trick is complete. In the medical setting trust and confidentiality, the use of medical equipment, and the expertise and competence of the doctor are but a few essential components of a successful interaction. This is not to imply that the art of medicine is a trick, but rather a complex set of circumstances that can be engineered to promote the best possible outcome for both the doctor and the patient – or the magician and their audience.

The concepts of magic in the Harry Potter series can be used as examples to study issues that medicine raises in our own society. By focusing particularly on The Order of the Phoenix, The Half-Blood Prince and The Deathly Hallows, it is possible to compare the learning processes for both young magicians and medical students that are considered necessary to prepare them for life in their profession. Within the books there are interesting issues regarding perspectives of professional knowledge and power, with diverse examples of socio-economic status informing the treatment of certain groups by others. The psychology of the misuse of power by those in positions of authority and professionals acting under duress provide a measure of insight into the actions of doctors under a totalitarian regime. Finally the ethics of using science and magic are debated throughout the series, and provide valuable material for discussion of moral issues that can be translated directly to medicine.

Physicians and Magicians: A Magical Education for Physicians in Life, Death, Power, Potions and Defence Against the Dark Arts 

Education

There is a clear comparison between magic and medicine in the structure of training which can be classified into three, occasionally overlapping, areas which broadly equate to the classic educational paradigm of knowledge, skills and attitudes.

Right from the very beginning (we are excluding Owl Post although that may be equated to the acceptance letter) the similarities are striking. The young, aspirant magician’s trip to Diagon Alley, to buy a pile of books they don’t understand and a wand they don’t know how to use, equates to the medical student’s first visit to the University bookshop and purchase of stethoscope and other medical equipment. A cat, rat or owl would make a more interesting and interactive companion than a skeleton – if somewhat less relevant to medical studies. Here we see the first inklings of a professional attitude, in that both sets of students begin to take on the accoutrements that distinguish them from the non-medical or Muggle population.

There are also many similarities in the education process. Hogwarts requires seven years compulsory teaching, with the witches and wizards “coming of age” the year before they qualify. This provides a greater degree of freedom for them to practice their magic and hone their skills in the Muggle world, unprotected by the castle’s enchantments and restrictions on underage magic. Similarly doctors in the UK qualify after five years but have a further two years as junior doctors, gaining more responsibility during their sixth and seventh years.

Furthermore, both educations consist of a combination knowledge acquisition through book learning and skills through an apprenticeship. There is also a degree of crossover in the subjects studied: Potions and pharmacology, Arithmancy and chemistry, and Muggle Studies and communication skills.

There are even parallels in the same work hard, play hard ethic. Hours are long, learning goes on late into the night and copious quantities of beer are consumed – though there may be some suspicion that Butterbeer is not as potent as real ale.

Right from the beginning, both sets of students are externally regulated by either the General Medical Council (GMC) or the Ministry of Magic (MoM). As well as overseeing competencies these bodies define and regulate the appropriate attitudes through the ‘fitness to practice’ committee and, as Harry discovers more than once in the series, the Improper Use of Magic Department. Furthermore they effectively create a closed-shop which cannot be breached by the non-professional. (1,2)

However, whereas the GMC and the medical profession seem to be striving towards an ever more open and inclusive approach to the delivery of medicine, it could be argued that the MoM is rigidly sticking to a more archaic, paternalistic model. Muggles do not possess magic, and are generally not permitted to even know that wizards and witches exist. If mistakes are made and members of the Muggle population do become unintentionally aware of magic, it is acceptable to have memory charms performed on them without their knowledge or consent. This is demonstrated throughout the books, from the murders committed by Peter Pettigrew on the night of Voldemort’s destruction to the treatment of the Roberts’ family at the Quidditch World Cup in the Goblet of Fire. In The Deathly Hallows Hermione decides that the best course of action for her parents is to modify their memories, in order to make them forget they have a daughter and feel a sudden desire to leave the country. As she possesses the knowledge and skill to perform such a spell, she does this herself without consulting her parents or any of her fellow magicians. (3–5)

Much as one might, at times, wish to remove a patient’s memory of an interaction -ethics aside – conventional (i.e. non-magical) medicine still only has the power to induce prospective amnesia, and even then on an imperfect basis. (6) Additionally, research has shown that better outcomes are associated with patients understanding their illness and being involved in decisions about their treatment so maybe a shift towards a more informative and holistic partnership between patients, doctors, magicians and Muggles can only be a good thing. (7,8)

 

Power in life…

It’s not only actions that have consequences but attitudes too, particularly when it comes to wielding the kind of power possessed by physicians and magicians. The “use-or-not” of power is both a central theme of the Harry Potter books and an important consideration in terms of the doctor as magician.

The magical world is hidden from Muggles, as Hagrid explains to Harry at the very beginning of The Philosophers Stone, because people would want magical solutions to all their problems if they knew it was available. (9) His point is reinforced in The Half-Blood Prince during a conversation between the Muggle Prime Minister, the ex-Minister for Magic Cornelius Fudge and his replacement Rufus Scrimgeour:

‘The Prime Minister gazed hopelessly at the pair of them for a moment, then the words he had fought to suppress all evening burst from him at last.
“But for heaven’s sake — you’re wizards! You can do magic! Surely you can sort out — well — anything!”
Scrimgeour turned slowly on the spot and exchanged an incredulous look with Fudge, who really did manage a smile this time as he said kindly, “The trouble is, the other side can do magic too, Prime Minister.”’ (10)

This is useful in exploring the expectations some people – and some doctors – have about the power of medicine. In the past the physician was more like the magician, albeit one who used sleight of hand rather than real magic, creating power through obfuscation in a veneer of classicised language and instruments, such as the stethoscope, that put space between them and the patient. Interestingly, as their real powers have grown, the façade has come down to a large extent and patients can have much greater knowledge of their conditions and of the ‘spells’ possessed by the doctor.

Nonetheless, expectations have simultaneously risen and it often seems that patients think doctors should be able to do magic. Maybe it would help to show them how “the other side” also has “magic”; whether it is the ability of the virus to mutate to escape drugs and detection, or the cancer to hide in the patient’s own cells (DNA even) to evade chemotherapeutic spells and radiation wands, only to re-emerge like Voldemort from his Horcruxes. There is still no “Magic Bullet” to specifically target every disease process. (11–14)

The exchange above also illustrates how the patient can be affected by the amount of power they feel they have over their condition. As he feels he is losing control of the situation, the Muggle Prime Minister cannot contain himself any longer, and his words are redolent of patients and their relatives in the face of a poor prognosis. (15)

The Dursleys are Harry’s Muggle family from his mother’s side. Despite being among the few Muggles who know about magic, they choose to ignore it for as long as is possible because they see magicians as troublemakers and a source of embarrassment. They pretend that Harry is mentally unstable rather than admit to him being a wizard. It is only in The Order Of The Phoenix when…

“The arrival of Dementors in Little Whinging seemed to have breached the great, invisible wall that divided the relentlessly non-magical world of Privet Drive and the world beyond.”

…they see the possible impact of magic on their own lives, and they begin to ask for Harry’s advice and guidance.

There are patients who have an analogous distrust of doctors, to the extent that they will leave conditions far longer than they should in order to avoid confronting the medical world. The Dursleys represent this group and demonstrate how people can have deep-seated and rationalised (though not necessarily rational) views. The Dursleys are, therefore, useful characters to consider when dealing with patients can be very afraid of a condition that they do not fully understand. (2)

 

… and power over death

The biggest ethical dilemma raised in Harry Potter books relates to the death of Albus Dumbledore in The Half-Blood Prince. After putting on a cursed ring by mistake Dumbledore asks Severus Snape for help. Snape uses a potion to trap the curse in Dumbledore’s right arm temporarily, although they both know he will still be dead within the year. Dumbledore then asks Snape to kill him when the time comes, as this will prevent him suffering for longer than necessary whilst also solidifying Snape’s position with Lord Voldemort in his double agent role.

This situation is analogous to palliative treatment and physician-assisted death. As Snape delivers the final blow himself rather than provide the means for Dumbledore to take his own life, and Dumbledore is conscious up until the Avada Kedavra killing curse hits him, it would most likely fall under the category of voluntary active euthanasia. (5,10)

The first issue this series of events raises is that of the ethical dilemma that surrounds the boundary between a duty of care and actively shortening a patient’s life. Snape finally agrees to undertake this task ‘for the greater good’- to protect his double agent identity and therefore help assure the safety of the students at Hogwarts.

In medicine the death of a terminally ill person in order to benefit the life of another is one of the core issues when discussing the legalisation of euthanasia. Setting aside the moral issues, benefit may be derived from both the individual, in terms of reduced suffering, and the collective, through the reduced drain of limited resources. However, this must be set against the need to protect elderly and vulnerable people, and provide optimum medical care. (16)

The second issue this event raises is the emotional effect on the doctor or magician who delivers the final, fatal blow. We see Snape hesitate before killing Dumbledore and, even though at this stage he is portrayed as Voldemort’s henchman, we can feel his reluctance. This is despite the fact that he is acting on a well thought-out and considered advance directive. As Dumbledore explains in The Deathly Hallows:

“I ask this one, great favour of you, Severus, because death is coming for me… I confess I should prefer it to be a quick, painless exit to the protracted and messy affair it will be…”

Nonetheless, Snape fears for the consequences to himself:

‘“That boy’s soul is not yet so damaged,” said Dumbledore. “I would not have it ripped apart on my account.”

“And my soul, Dumbledore? Mine?”

“You alone know whether it will harm your soul to help an old man avoid pain and humiliation,” said Dumbledore.’ (5)

This illustrates a common argument against euthanasia, regarding the psychological burden that could be felt by the enabling physician. This has been a subject of specialist research for many years, involving doctors who work in clinics such as Dignitas in Switzerland and those who are required to administer lethal injections to criminals in the United States. (17)

Part of the problem is that Snape is, necessarily, acting alone. It would be much easier if he had advice, support and objectivity from others. It therefore underlines the need in medicine for a multidisciplinary approach to these situations. (18)

The description of the last moments before Snape kills Dumbledore bring up two further issues. The first is the effect on the peripheral characters: in the medical context, the relatives; in this context, Harry, who is shocked and frightened by the unfolding events.

‘“Severus…”

The sound frightened Harry beyond anything he had experienced all evening. For the first time, Dumbledore was pleading.’

It is not until The Deathly Hallows that it becomes apparent Snape was acting on Dumbledore’s wishes. At this point it seems that the old wizard is begging for his life to be spared.

‘…Snape gazed for a moment at Dumbledore, and there was revulsion and hatred etched in the harsh lines of his face.

“Severus… please…”

Snape raised his wand and pointed it directly at Dumbledore.

“Avada Kedavra!”’

But furthermore, it is impossible to tell whether Dumbledore had actually changed his mind at the last minute and was, as it seemed to Harry, pleading for his life. And this is something that needs to be considered with medical euthanasia, particularly in patients with degenerative diseases that may compromise their ability to communicate or comprehend over time. These decisions are often made a long way in advance, and it can sometimes prove very difficult to be sure that their wishes have not changed. (10,19)

 

Defence against the Dark Arts

The steady implementation of the totalitarian state in the second half of the Harry Potter series closely mirrors the rise of Nazism in Germany prior to the Second World War. The persecution of the Jews and the Muggle-borns, Neville Chamberlain’s appeasement policy and Cornelius Fudge’s feverish denial, and the use of propaganda by Voldemort and the Death Eaters are but a few similarities. The actions performed by different magicians under this regime is an interesting study in psychological terms, and provides some insight into the behaviour of professionals such as doctors during wartime and under duress. (20)

Under the rule of Hitler it was deemed necessary for doctors to experiment on classes of people who were considered ‘lesser beings,’ in order to further knowledge and discoveries in the field of medicine. This began with the psychological dehumanisation of the Jews and other ‘undesirables’ through smear campaigns, blaming them for the defeat of Germany in 1918 and the subsequent economic depression. Through the use of careful and steady propaganda it seemed like an almost natural progression for the Jews to eventually be segregated and placed on a registry system. Some doctors chose to accept the idea of the “Jewish plague” and took pride in providing what they believed to be a valuable service to Germany and scientific advancement, whilst other doctors performed their duties under duress to avoid being killed themselves. It became commonplace for those within the medical profession to control, torture and kill Jews, homosexuals, the disabled and many others as part of their day’s work, and to record the results of the various experiments performed. (21)

In Harry’s world there are certain witches and wizards who can be used to represent the actions of different medical professionals under the oppressive regime in Nazi Germany. Firstly interesting parallels can be drawn between Hitler’s “Angel of Death” Dr. Josef Mengele, and the Head of the Muggle-Born Registration Committee Dolores Umbridge. Mengele had a background in genetics and twin studies in particular, and revelled in the fact that Hitler’s regime allowed him to further his studies through experimentation in a way that would not have been possible previously. Similarly Umbridge is vociferous regarding the offensive nature of half-breeds and later Muggle-borns, and seems unperturbed who is in charge as long as she is able to increase her power and her freedom to use it. It later comes to light that she abused her position or power as early as the beginning of The Order of the Phoenix, when she illegally sent Dementors after Harry to try and silence him regarding Lord Voldemort’s return. She was initially appointed by the Ministry as the Defence Against the Dark Arts teacher at Hogwarts in order to keep a closer eye on Harry and Dumbledore, but rapidly progressed up the ranks due to her dedication and ruthless personality. Whilst not in league with Voldemort himself, she certainly upheld his ideals and, similar to Mengele in Germany, seemed to delight in using the political situation to her advantage to achieve her aims. (2,21)

Alecto and Amycus Carrow represent the Nazi doctors who truly believed in their leader’s vision and would do everything in their power to assist in its’ realisation. They differ slightly from the type of doctor portrayed by Umbridge, as they believed in Voldemort’s particular ideals rather than his general approach. The Carrows excelled under Voldemort’s rule during the Second Wizarding War, and revelled at the chance to freely use the previously illegal Unforgiveable Curses: Imperio (control), Cruciatus (torture) and Avada Kedavra (death) – the same methods used on the “undesirables” by the Nazis during the Second World War. Harry is depicted on posters and referred to by the Ministry as ‘Undesirable No.1’.

Professor Snape’s true loyalties are in question up until his dying moments at the end of The Deathly Hallows, where it is revealed that he had indeed been trying to protect Harry all along. Working as a double agent for Dumbledore, he made the difficult decision to continue to work for Voldemort in the hope that he could exert some control over the Carrows’ punishments inflicted upon the students they were in charge of. This has previously been the case with doctors who speak out after working under duress, in an attempt to limit suffering as much as they can in a difficult situation. (5)

The character of Voldemort himself raises important issues regarding the psychology of a dictator. Voldemort used great acts of evil to split his soul into 7 pieces (Horcruxes) to attempt to gain immortality and power. The concept of ‘doubling’ describes how a person is able to commit acts previously abhorrent to them, as they simply ‘switch off’ their other side. This has been offered as an explanation why people, such as Nazi doctors, were able to torture and kill ‘undesirables’ on a regular basis. (10,21)

Conclusion

Throughout the Harry Potter books there are many comparisons that can be drawn between the magical and the medical world. The similarities and differences that have been highlighted give us an original way of looking into important issues concerning the medical profession, and the magician-Muggle relationship raises interesting points regarding the doctor-patient interaction. Ultimately it leaves one wondering whether we as physicians try too hard to be magicians? Or is it that patients actually want us to be magicians? As always, the reality probably lies somewhere between the two extremes.

 

References

  1. General Medical Council L. Tomorrow’s doctors: Recommendations on undergraduate medical education. 2009.
  2. Rowling J. Harry Potter and the Order of the Phoenix. 1st ed. Bloomsbury; 2003.
  3. Rowling J. Harry Potter and the Prisoner of Azkaban. 1st ed. Bloomsbury; 1999.
  4. Rowling J. Harry Potter and the Goblet of Fire. 1st ed. Bloomsbury; 2000.
  5. Rowling J. Harry Potter and the Deathly Hallows. 1st ed. Bloomsbury; 2007.
  6. Twersky RS, Hartung J, Berger BJ, McClain J, Beaton C. Midazolam enhances anterograde but not retrograde amnesia in pediatric patients. Anesthesiology. 1993 Jan;78(1):51–5.
  7. Coulter A. Paternalism or partnership? BMJ. 1999 Sep 18;319(7212):719–20.
  8. Bond C, Blenkinsopp A, Raynor DK. Prescribing and partnership with patients. Br J Clin Pharmacol. 2012;74(4):581–8.
  9. Rowling J. Harry Potter and the Philosopher’s Stone. 1st ed. Bloomsbury; 1997.
  10. Rowling J. Harry Potter and the Half-Blood Prince. 1st ed. Bloomsbury; 2005.
  11. Williams S, Weinman J, Dale J, Newman S. Patient expectations: What do primary care patients want from the GP and how far does meeting expectations affect patient satisfaction? Fam Pract. 1995 Jan 6;12(2):193–201.
  12. Kenten C, Bowling A, Lambert N, Howe A, Rowe G. A study of patient expectations in a Norfolk general practice. Health Expect. 2010;13(3):273–84.
  13. Illich I. Limits to Medicine: Medical Nemesis – The Expropriation of Health. Marian Boyars; 1976.
  14. Strebhardt K, Ullrich A. Paul Ehrlich’s magic bullet concept: 100 years of progress. Nat Rev Cancer. 2008 Jun;8(6):473–80.
  15. Lupton D. Medicine as Culture: Illness, Disease and the Body. SAGE; 2012. 79-136 p.
  16. Harris D, Richard B, Khanna P. Assisted dying: the ongoing debate. Postgrad Med J. 2006 Aug;82(970):479–82.
  17. Stevens KR Jr. Emotional and psychological effects of physician-assisted suicide and euthanasia on participating physicians. Issues Law Med. 2006;21(3):187–200.
  18. Seale C. Legalisation of euthanasia or physician-assisted suicide: survey of doctors’ attitudes. Palliat Med. 2009 Jan 4;23(3):205–12.
  19. Hotopf M, Lee W, Price A. Assisted suicide: why psychiatrists should engage in the debate. Br J Psychiatry. 2011 Jan 2;198(2):83–4.
  20. Curthoys A. Harry Potter and historical consciousness: Reflections on history and fiction. Hist Aust. 2011 Apr 13;8(1):7–22.
  21. Lifton RJ. The Nazi Doctors: Medical Killing and the Psychology of Genocide. Basic Books; 2000.

Author contact details:

1. Fiona N Dogan, 5th year BM BS student, Brighton and Sussex Medical School

f.dogan1@uni.bsms.ac.uk

2. Dr C Mark Harper BSc MBBS FRCA, Consultant Anaesthetist, Brighton and Sussex University Hospitals
mark.harper@doctors.org.uk

The Reading Room: A review of Katrina Bramstedt’s ‘Trapped in my own labyrinth: poetry spawned by vertigo’

16 Jan, 15 | by cquigley

 

Reviewed by Giskin Day, Senior Teaching Fellow, Imperial College London

 

Many people, including me until I read Katrina Bramstedt’s book, mistakenly use ‘vertigo’ to describe a fear of heights. The correct term for this is ‘acrophobia’. Vertigo is a serious and disabling symptom of a constellation of inner-ear disorders that describes a disorientating, spinning sensation, often accompanied by nausea.

Trapped in my own labyrinth: poetry spawned by vertigo is a collection of 50 or so verses divided into two parts, ‘Illness’ and ‘Recovery’. In the preface, Bramstedt explains that the poems were written as a form of personal therapy but also ‘to show others, especially the otolaryngology profession, a glimpse of the suffering of a patient with vestibular dysfunction’. If this sounds like someone who knows their nystagmus from their neuritis, it is because the author is a clinical ethicist with extensive experience of dealing with matters medical.

As a description of symptoms, the short poems are very effective. They describe difficulties in sleeping (‘I’d like to turn over / But my vertigo won’t let me’: p.18). Chronic nausea caused a complete lack of appetite, described in the poem ‘Straws’ (‘I am like the straws that feed me / Each arm, thin as a straw / Each calf, thin as a straw’: p.20). As successful medications are tried, the side-effects are also catalogued in verse.

In the recovery section, Bramstedt tells the story of flying to Italy (a daunting prospect for someone exquisitely sensitive to motion sickness) and being treated by the Semont manouver, a vigorous manipulation of the head which causes crystals in the ear to move to an area of the inner ear where they no longer cause vertigo. Happily, the treatment is a complete success.

I’m sure Bramstedt would be the first to acknowledge that the poems won’t be taking up the time of poetry prize judges anytime soon. They are ‘forensic’ rather than lyrical, their meanings explicit rather than being freighted with nuance. Few lines consist of more than five words. Metaphors are used sparingly in the text, although the well-chosen photographs do serve as visual metaphors very effectively, e.g. a poem called ‘Dr. Pecci’ describing the hope of a cure he proffers, is nicely illustrated by a photograph of a life belt.

For medical humanities teachers and researchers, however, the book might benefit from a bit more contextual commentary about the process of writing for therapy, especially in the midst of suffering. The ‘resources’ section at the end of the book gives just three organisations associated with vertigo, so there is room for development there. The poems cannot withstand removing them from the context of the whole story: they need to be read as a sequence.

Some books are eminently suited to e-publishing and Katrina Bramstedt’s book is definitely one of them. Its availability as an e-book makes it much more likely to reach its niche audience. The photographs and poems are nicely laid out for a tablet screen.

This book does exactly what it says on the tin: it gives those experiencing or attempting to treat vertigo an insight into the subjective experience of living with the condition.

 

Bramstedt KA.  Trapped in my own labyrinth: poetry spawned by vertigo (revised edition). Gold Coast, Australia: Salvataggio Press 2014. Available from https://itunes.apple.com/us/book/trapped-in-my-own-labyrinth/id928994688?mt=11

 

Tiger Country (Hampstead Theatre): A Review by Aneka Popat

13 Jan, 15 | by Deborah Bowman

 

 

For some, the workplace is synonymous with shiny desks, immaculate windows and a calm open sea of computers, complete with the reassuring hubbub of Monday morning gossip. Yet, for those that work in the capital’s hospitals, the workplace is a jungle where the gleam of a scalpel and the unforgiving glare of ward lighting mark the territory. We are in Tiger Country, a world where instinct stirs and we flirt with fate.

 

Nina Raine’s Tiger Country is a thrilling drama about professionalism, prejudice, romance, ambition and failure in an overburdened health service. It is far from the hyperbolic depictions of television soaps. It is frank and honest, exploring not only the daily challenges of a busy London hospital, but also the impact on the individual of being there both literally and metaphorically.

 

The emotional core of the play is with two ambitious female doctors, at different stages of their training, but each determined to succeed. Emily (Ruth Everett), a junior doctor, represents Tiger Country’s young blood. Though rigorous and thorough in all she does, we see her vulnerabilities as she attempts to juggle her professional identity and her relationship with medic boyfriend James (Luke Thompson). In contrast, Vashti (Indira Verma), the single and driven urology registrar rediscovers the identity that was increasingly obscured behind the surgical mask.

 

Raine seamlessly integrates medic ‘slang’, and inside jokes in her docu-play and avoids caricatures. The 14-strong cast creates a working hospital in all its diversity and detail. The squeaky wheels of hospital beds, the disposable coffee cup beside the computer station and the power walks of staff contribute to a stylistically sensitive set. The audience sits either side of the stage and is immersed in the frantic hospital environment. Fergus O’Hare deserves a special commendation for his sound design with Bollywood numbers sitting alongside the melodies of Nitin Sawhney.

 

Tiger Country is a sharp and quick-witted play about hospital culture. It offers more than a view of hospitals and the NHS. The piece is an intelligent examination of the human cost and achievements of medicine.

 

Tiger Country is at Hampstead Theatre until 17th January: http://www.hampsteadtheatre.com/whats-on/2014/tiger-country/

 

Aneka Popat, 4th Year Medical Student

St George’s, University of London

m1000780@sgul.ac.uk

 

 

Letting go of ourselves; how opening our minds will let us understand our patients by Benjamin Janaway

10 Jan, 15 | by BMJ

 

Empathy is described by Webster’s dictionary as ‘the feeling that you understand and share another person’s experiences and emotions’ 1, the subjective knowledge that you can be inside the mind of another and feel things as they do. I would argue that although this is a beautiful concept, due to the variation of people’s experiences, the stories of their lives and their dreams and aspirations, no one can ever truly empathise before letting go of themselves.

In my work I often hear long stories, sometimes connected, mostly unconnected, with the physical symptoms that a patient displays. It is more often than not, as previously discussed in another of my articles, the change in a patients way of life is their main concern, not the physical problem causing it. It is the subjective perception of an objective physical or mental change that presents the drama within his or her own mind.

Through my extra academic work into philosophy, psychology, neurology and through reading classical literature, I have noted a basic human desire to label and explain the external world with reference to ourselves. This message is conveyed in either parable or direct prose from religious texts, to Stephen Hawking’s ‘A Brief History of Time’, where Hawking quotes;

Humanities deepest desire for knowledge is justification enough for our continuing quest. Our goal is nothing less than a complete description of the universe we live in2.’

Hawking’s grace with words beautifully expresses an underlying psychological process that may at times burden our brains but at the same time paint the canvas of our deepest dreams and questions. We wish to know the universe to know our purpose, to know ourselves, to explain changes in the universe we see to give us some inkling of their significance, and how we our significant.

Happiness, sadness, anger and many more are all primal responses to the complexity of the universe we see, something deep within us, explained through psychology as conditioned responses, through anatomy as limbic activation3 and through literature as the beauty of things. We paint our image of the universe with our own brush, the paint coloured by our own lives.

Those who have read ‘Love in the Time of Cholera’ will know the bitter beauty of a life spent in the shadow of unrequited love, and you may have your own judgements about Florentino Ariza and his choices4. Some may argue that his life spent in waiting represents the purest of human love, the greatest that our minds and words can create, is a life well spent. Others may argue that his life was wasted, opportunities missed in the false deification of a lost summer love. I would argue that you are both right, that your interpretation is based on your own understanding of your universe and your own values. Florentino represents a longing deep in all of us to connect with another, and in a deeper way, to connect with the universe itself.

I would argue that it is the variation in our perspectives that makes for the rich tapestry that humanity will leave hanging in our corner of the universe. Each story told is simply strand intertwined with a million others, and as doctors we have the privilege of becoming part of many. Realising that our thoughts are simply are own, our own opinion and ascribed our own value is a step in the right direction to understanding others, that standing back from your square in the tapestry allows you to see the entire works.

For a patient, a word I abhor and wish to replace with ‘John, Mary, or whoever’, their strand is redirected by illness, however minor or major, and ends leaving a different mark on their universe, a frayed edge or missed thread. For my time in oncology, seeing those facing death with bravery and pride, the last threads of their ebbing strands glowed brighter than ever before as the wonderful healthcare staff helped them tread their own path.

In treating these amazing people I learned to forget about my own views of the world, my own assumptions of the universe, to clear my mind and listen to not just their words, but what they wished to convey with them. To paraphrase a famous spiritualist, words are signposts pointing to something5, and are often taken further than what they actually mean. ­To fully understand the emotional context conveyed in a word one must lose their own assumed reaction and critique their own understanding, their own mind created connection, and see things anew.

Seeing things anew, letting go of your own views and trying to learn and understand those of the patient is the closest I argue that we can come to true empathy. Even suffering the same ailment does not mean you see the disease the same way; it does not paint the same story or change your view in the same way. In the end medicine is not just dealing with disease, it is dealing with the minds and dreams of those, who through forgetting ourselves, and we are simply part of one cosmic consciousness. We are all painters, each with our own brushes and colours, but only by letting go of our own can we pick up another’s.

At the beginning of this article I quoted Webster’s definition of empathy, but I now propose a minor amendment,

‘the process by which letting go of your own view, you may understand and share another person’s experiences and emotions’.

By seeing the universe through the eyes of another, we can see how their story changes and how we can help shape their narrative, guide their thread, or steady their hand, in making the mark they wish to leave on this universe. That, I argue, is our empirical job as doctors, to help people be who they wish to be. So as healthcare professionals, junior or senior, how do we achieve this? Greet each new person with the zest you approach a new novel, without assumption, without preconception and with open arms and mind.

ben.janaway@nhs.net

The opinions above represent those of the author and do not necessarily reflect those of SDHCT or associated NHS affiliates.

 

References

  • http://www.merriam-webster.com First accessed 27/12/14
  • Hawking, S. A Brief History of Time, 1988, Bantam Books, Transworld Publishers, England
  • Peters, S, The Chimp Paradox, 2011, Ebury Publishing, England
  • Marquez, G G, Love in the Time of Cholera, re-published 2008, Penguin, Australia
  • Tolle, E, The Power of now’, 2001, Hodder Publishers, England

The Reading Room: A review of Marion Coutts’s ‘The Iceberg’

9 Jan, 15 | by cquigley

The Iceberg by Marion Coutts

Reviewed by Elizabeth Barry, Department of English and Comparative Literary Studies, University of Warwick

9781782393504

Marion Coutts’s 2014 memoir The Iceberg details the period covering her husband Tom Lubbock’s diagnosis with an aggressive brain tumour, the progress of his condition, and his death. Lubbock, art critic for The Independent newspaper, himself wrote a short memoir (Until Further Notice, I Am Alive) about his condition, and its progressive attack on his ability to speak and write. The Iceberg, then, is Coutts’s story, of her struggle to deal with the news of Lubbock’s condition, to communicate with him and help him to write, and to care both for Lubbock and their young son Ev. Eighteen months old at the time of the diagnosis, Ev bounces irrepressibly in and out of the narrative, both a solace and a terrible reminder of the future that Lubbock will not share.

This extraordinary work rejuvenates the cliché of being ‘unflinchingly honest’. Coutts does not flinch. Her style is measured and sober, her reflections a detached observation on her own pain and anger. There is no misery in this misery memoir. Into what precise genre, then, does this work fall? This seems an almost impertinent question—this is truth, it appears to us, impeccable in its clarity and honesty. The question matters, however, for the reader’s horizon of expectation. It is memoir, but shorn of a degree of narrative frame: the storytelling discourse. Coutts does not try to make sense of what is happening for us—there is no sense to be made—but gives such a lucid account of the experience and its shades of feeling that it teaches us far more than works with a more intrusive narrative shape. The work is in four sections, which cover Lubbock’s diagnosis and first surgery, the second surgery and progression of the illness, his hospitalization, move to a hospice and death, and finally a brief coda on the immediate aftermath. It is episodic in structure, but the chronology and facts of the medical biography are offered by dated ‘update’ letters, reproductions of those Coutts sent periodically to their friends. These provide, then, the frame for the story’s inherent uncertainties and shifts in feelings, balancing the more abstract passages where the experience is so huge, the change in circumstances so cataclysmic, that the categories of time and space themselves warp and threaten to eclipse the factual story. As Coutts observes at one point, “time is a material stream” (91) in this context. Attuned to the discourse of personal disclosures, medical and emotional, in this sort of life-writing, the reader can find the more philosophical reflections jarring at first, however penetrating they may be. But it becomes increasingly apparent that this jarring is precisely the point: Coutts’s means of approach to her situation (her capacity to understand it, her agency in the face of its exigencies) are damaged, as well as the reality itself.

 

Reading this account of brain disease and its effects brought to mind Catherine Malabou’s recent philosophical work, The New Wounded: From Neurosis to Brain Damage, which argues for the incompatibility of brain damage and narrative representation. Coutts reflects explicitly at one point on the brain’s plasticity, the nub of Malabou’s philosophical interest: “Plasticity. This is the environment we live in. It is volatile and dangerous” (171). Her memoir, without any excursus into theory, offers the lived experience of what Malabou posits as the “rupture of narrativity” (55) caused by brain damage. As Coutts writes on the first page of her book, Lubbock’s diagnosis “has the status of an event”, “a rupture with what went before: clean, complete” (1-2). Malabou describes the “absence of sense” that seems to attend brain injury, which “challenge[s] us to think pure, senseless danger as an unexpected event—incompatible with the possibility of being fantasized. One does not fantasize a brain injury; one cannot even represent it” (9). The sparseness and economy of Coutts’s memoir is likely her own stylistic predisposition, but it also speaks to the idea that the experience of brain disease, even at one remove, is both ineffably strange, and resolutely literal.

Often these works stand in a relation of contrast. Coutts’s work acts as a riposte to Malabou’s construction of the brain injured subject as a victim of unthinkable and unspeakable psychic pain, who is unrecognizably transformed. Lubbock’s diagnosis is an event, a rupture, but there is one continuity. The family keeps its shape and character: “Our unit stands” (2). Lubbock is not an isolated individual, a victim, but part of an extended organism that can weather collectively what might destroy its members divided. The family challenges Malabou’s downbeat reflections, providing a salutary example of the idea of a ‘new normal’. This, a concept prevalent in qualitative approaches to oncology and in particular to brain cancer (Schmer (2008) and Cavers (2012)), sees a changed normality elaborated by patient and caregivers which accommodates the disease, neither denying it nor allowing it completely to displace the existing world of the family or its environment. This couple’s ‘new normal’ (worked at tirelessly and resourcefully by Coutts herself) preserves key tenets of their former life, principally the pleasures of food, friendship and a communion with the outdoors, and the satisfactions of work. Lubbock is also far from a wounded being by nature or choice. His experience becomes literally unspeakable as he loses language, but he is lucid (and cheerful) within these limitations until the very end, thought seemingly preserved even when language is severely compromised. He faces the ordeal not only with fortitude but a kind of exhilaration: this is the world, the world is precious, we are together and we are still here. As Coutts reflects relatively late in the narrative, Lubbock’s condition, even in robbing him as a writer of his defining personal and professional capacity, does not change his personality: “The humour in his voice is undiminished. It fizzes through his words like soda. Illness has left his character simply intact” (212). Malabou’s emphasis on absolute narrative rupture is belied by these stories of everyday continuity and preservation.

Malabou is critical of the neurological narratives of Oliver Sacks, who (in his own words) makes his brain injured protagonists “heroes, victims, martyrs, warriors”. Coutts’s work eschews any of these narrative temptations and, perhaps because Lubbock wrote his own equally painstaking account of events, there is relatively little of his perspective in her work. This scrupulous refusal to put words in his mouth, so to speak, becomes less a choice as his condition progresses and more a reflection of his growing “introspecti[on]” (165). For these reasons, then, this can only be Coutts’s story. On the other hand, hers is for this space of time a story almost wholly determined by his—a tension that Coutts explores without sentiment or self-pity in all its wonder (the new chapter in their close and loving union) and its suffocation. At many moments the inseparability of the wonder and the terror of this period is felt in her narrative: “It is the dead, the straight dead of night and I have brought my subject and my object, the one who all this is about to the hospital” (190).

The chronological structure of Coutts’s memoir deliberately precludes a narrative trajectory of heroic conflict or martyrdom, although the inexhaustible probing of the nature of her experience speaks to a far more considered endeavour than a mere chronicle or diary. Reflections on narrativity themselves punctuate the work: the limitation of the brain surgeon’s interest to fact denies the family’s “narrative, […] how this thing affects us in daily life” (95); the possible trajectories of the illness proliferate and present a maze of possible futures, “a blizzard of lines” (53); perforce Coutts leaves “white spaces” where her account of Lubbock’s pain should be (“I cannot write on pain so pain does not get written down. It is blank” (255)). These considerations take on a still more poignant form when she talks about their son and the necessity—and challenge—of constructing a “version of our narrative” that he can understand: “There will be no happy end, no moral neatness, no rhyme. […] I feel that two adults must be intelligent and brave enough to come up with something here, some version of a story to help Ev negotiate it. So far I am wrong” (164).

There is little retrospect in the work: this is not a “version of a story” but the hammering out (and often discarding) of words that can never keep up with the exhausting newness of the situation.   There are some lyrical affordances for Coutts and her reader, however; some hard-won moments of communion with the natural and social world when she can reach out to existing metaphors and conventions rather than having to coin her own. Time passing is marked in places not only by a development in Lubbock’s condition but also by the change of seasons. These stages are put into moving connection or counterpoint. Sometimes both at once. The uplift of Spring at the beginning of the second section coincides with a surprising move from darkness to light—decline to reprieve, bad news to good. Spring coincides with the tumour starting, like the nature around them, to “[grow] again”. There is a parallel development that is more positive, however: “Spring. Magnolia soulangeana opens its bells and we are well. Normality is gifted in the form of steroids” (91). The juxtaposition of the natural flowering and the chemically induced “normality” is ironic. This normality, rather than the new normality of cancer, is a simulacrum of the old, a “false peak” which takes them in. And yet this temporary happiness is genuine. The narrative witnesses itself having it both ways: in retrospect, this good news will have proved an illusion (“we are taken in, of course we are”). On the other hand, the relatively flat episodic structure of the narrative takes on a new and moving significance: the writing lives predominantly in the present tense, in a series of moments that have the potential to obliterate what has been and what is to come, and offer an epicurean freedom from fear. “We are as ever in the moment and we are well—so we are forever well. […] We splash about like birds in a birdbath” (91).

While time has become more material in the train of this illness, space has become less so, culminating in the narrator’s loss of purchase on her location at Lubbock’s death: “the action is familiar but not the place. We have stopped being anywhere at all. We are way outside, out of culture, place, gender.” This is, however, a source of peace rather than distress. “I do not know where we are but I feel very sure of myself here.” While space is dissolving, time is “refreshing itself”. In surrendering to time, space disappears from view—but Coutts can at last relinquish the fight and bow to this force, and there is no little comfort in this. “Time is the fundament we have never left, so powerful is its agency and pull, so direct and strange. There is nowhere in the world like it” (291). The end is good: a peaceful sleep for Lubbock, and in a sense one for Coutts too. When death ends a long illness, with its exhausting demands on the carer and its treacherous shocks and feints, it is well known that relief can accompany grief. There is, undoubtedly, this, but also something more than this, here. Coutts also awakes into the narrative at this end point, releasing Lubbock to death and taking his place as her own subject and object (“Go. I am not anything. Go. I am”). He has “[left] us standing” (294), as she says in the last entry, a black pun but also an uplifting statement of fact.

 

The Iceberg by Marion Coutts.

Published by Atlantic Books, 2014

 

References

Debbie Cavers et al, ‘Social, Psychological and Existential Well-Being in Patients with Glioma and their Caregivers’, Canadian Medical Association Journal, vol. 184, no. 7 (2012), 373-382

Tom Lubbock, Until Further Notice, I Am Alive (London: Granta, 2012)

Catherine Malabou, The New Wounded: From Neurosis to Brain Damage (Forms of Living), trans. Steven Miller (Bronx, NY: Fordham University Press, 2012)

Oliver Sacks, The Man Who Mistook His Wife for a Hat (New York: Summit Books, 1985)

Carol Schmer et al, ‘When a Family Member Has a Malignant Brain Tumour: The Caregiver Perspective’, Journal of Neuroscience Nursing, vol. 40, no. 2 (2008), 78-84

 

The Reading Room: A review of Emma Healey’s ‘Elizabeth is Missing’

6 Jan, 15 | by cquigley

This is the first in a series of three books from the Costa Book Award 2014 category shortlist that will feature in the Reading Room. Elizabeth is Missing was yesterday announced as the First Novel category winner. 

 

Elizabeth is Missing by Emma Healey

Reviewed by Andrea Capstick, Division of Dementia Studies, University of Bradford

EIM pb jacket

One of the four shortlisted nominations for the 2014 Costa First Novel award, Elizabeth is Missing is an admirable attempt to place an older woman with dementia at the centre of a novel which otherwise belongs to the genre of crime or psychological thriller. The narrative unfolds on two levels. The back-story is a genuinely intriguing disappearing person mystery set during World War II when the central character, Maud, whilst still a child herself, lost her recently married sister, Sukey. The period detail here is well handled, particularly in relation to the social aftermath of war, and has clearly involved a lot of careful research. In the present day strand of the novel, the story of Sukey’s disappearance is paralleled by another vanishing, this time that of Maud’s long-standing friend, Elizabeth.

A central trope of the novel is that, due to her dementia, Maud perpetually confuses these past and present disappearances. Her problems with short-term memory lead her to go over the same ground repeatedly in her investigation of Elizabeth’s disappearance, whilst not being able to remember that she is doing so. In her pursuit of the truth about what happened to Elizabeth, Maud constantly writes notes to herself to remind her that ‘Elizabeth is missing’ and to suggest lines of inquiry that she needs to follow up on. At the same time, Maud confuses events relating to her sister Sukey’s disappearance with those of Elizabeth’s more recent unaccountable (to Maud) absence. Ultimately, we are made to realise that Maud does, in fact, remember historical facts that other people without dementia are not aware of, and that somewhere within the recesses of her memory lie the solution to a decades-old crime. Maud struggles to be heard and believed, and her determination to solve this double-faceted mystery is both moving and believable.

What worked less well for me was the credibility of Maud’s narrative voice. A certain amount of suspension of disbelief is necessary in our response to all fiction. In conventional third-person, ‘omniscient’ narrative, we quickly learn to ‘read through’ the narrative voice, accepting that we are being told what happened by someone with privileged knowledge. First-person narrative has always been recognised in literary theory as a more difficult form, particularly when we are faced with the possibility of an unreliable narrator. In the case of Maud’s present day narrative, the necessary suspension of disbelief becomes very difficult indeed. Here is someone who cannot remember what has just happened, even a couple of minutes earlier, who writes herself notes which she then immediately forgets about but who is somehow speaking to us as the first person narrator of the present day strand of the novel. How has this first-person, continuous present tense narrative got onto paper at all? This may not interfere with credibility for all readers, but it did for me, as I found I was constantly distracted by wondering about the impossibility of the story I was reading having been recorded. The attempt to represent Maud’s minute-by-minute subjective experience was a brave one, but felt as though it needed some additional narrative device in order to be credible, such as Maud having made audio-recordings that were then transcribed by a third party. Alternatively, given the relatively well-preserved recall most people with dementia have for remote events, it may have worked better had Maud’s first-person narrative related to the historical mystery, rather than to her halting present day attempts to find Elizabeth.

There is a very skilful interweaving of recurring themes and motifs in this book; lipstick, marrows, tinned peaches and particular wartime melodies crop up over and over again, at times almost turning the repetition often considered a ‘symptom’ of dementia, into something like an art form. There are also some extremely penetrating individual insights into how it might feel to have dementia; to have one’s underlying intelligence still intact but struggle to communicate with a dismissive external world. ’’They want you to have the right props” Maud says, ironically, “so they can tell you apart from people who have the decency to be under seventy. False teeth, hearing aid, glasses, I’ve been given them all.” The book is not written for laughs, but I did laugh in places at lines of Maud’s, such as “The word ‘plaque’ makes me angry”. Unfortunately this isn’t entirely consistent, and some sections of the book read rather too much like a creative writing exercise. Soil is described, for example, as being “chewable” but also as “spitting things out” within the same sentence, and the likelihood of Maud spontaneously using terms like ‘lasagne’ and ‘wok’ also seemed rather remote, given her other difficulties with word finding.

The novel is certainly unusual, and commendable, I think, in trying to combine a traditional murder mystery with a voyage into the subjective world of a woman with dementia. Ultimately, for me, it did not quite work on either level. The solution to the historical mystery would not have stood alone as a whodunit, because we suspect the answer from quite early in the novel, and it doesn’t help that the perpetrator turns out to be the most sympathetic character in the novel. The ending also somewhat undermines the strong theme running throughout the rest of the storyline about the potential for people with dementia still to be experts on their own experience, and to have strong convictions and loyalties. Nevertheless, there is a lot to learn from here. The book is dedicated to Healey’s grandmother and is no doubt based on observed real-life experience, which runs extremely true in some excellent set pieces such as the Mini-Mental State Examination test Maud has to endure on pages 154-157. Clinicians take heed and beware!

 

Elizabeth is Missing by Emma Healey.

Published by Penguin, 2015.

The Anthropology of Emory and Ebola: Emory Healthcare Thinks Outside of its “Concrete Box” by Laura Jones

23 Dec, 14 | by BMJ

 

 

Two days after Halloween, I met with Dr. Bill Bornstein, Chief Medical Officer and Chief Quality Officer at Emory Healthcare.  I am a cultural anthropologist who has been conducting field work at Emory University Hospital (EUH) for three years, and Dr. Bornstein and I meet monthly to discuss hospital culture, specifically that of the operating room.  I asked him if I could write about Emory’s experience with Ebola, and he said yes but was curious about my angle.  I said I was unsure.

 

Before leaving, Dr. Bornstein asked about my Halloween. I told him I went as Natalie Portman’s black swan.  He replied, “Have you ever heard of Nassim Taleb’s Black Swan Principle?…” He explained that people once believed all swans were white, and had never conceived of a black swan simply because no one had ever reported seeing one.  The metaphor suggests that we have endless assumptions about finite evidence.  Outliers are rarely predicted, but always seen in hindsight as glaringly obvious.  Dr. Bornstein and I locked eyes and smiled, knowing I’d found my angle.

 

The Ebola virus was named the Lingala word “Ebola,” or “Black River,” for a waterway near where it first surfaced. I sought to understand how Emory predicted the black swan that had emerged from the Black River.  However I soon learned that it didn’t–the isolation unit, or what its associate director Angela Hewlett calls the “Concrete Box,” was built with tuberculosis in mind, not Ebola.  But it wasn’t because of luck that Emory has been able to successfully treat four Ebola patients.  The M.O. of Emory Healthcare is that it’s better to be over-prepared than underprepared.  This had me thinking–has paranoia been key to the survival of our species, and will it ultimately cause our demise?

 

When I conduct behavioral observations at hospitals, my research subjects–the clinicians, not the patients–understandably wonder if there’s a chance I’m going to ultimately get them into trouble.  I am often called “the spy” and sometimes “the interloper.” During the height of the recent media frenzy over Ebola, I was once called “the Liberian.” In what seemed like every surgical procedure I observed, clinicians were agonizing over other people’s stressing about Ebola. Despite being in the same hospital as the disease, I didn’t overhear a single conversation about Ebola in the operating room. Maybe EUH wasn’t paranoid?

 

When Thomas Eric Duncan died in Dallas, my postdoctoral advisor, primatologist Frans de Waal, and I had a few impromptu conversations about empathy and socieoeconomic status.  Never a light discussion, it definitely wasn’t so with the man who has repostulated our understanding of the evolutionary foundations of morality (they’re not in humans).

 

This led to a conversation with Emory Healthcare President and CEO, John Fox, about empathy in the medical community.  When I asked if he’d lost any sleep in recent months, he said generally no. “I think we did the right thing by our mission and values.  [We asked ourselves two] basic moral ethical questions. Can we do it better than the alternative? …Can we manage it [and keep our community safe]? He continued, “We adopted the highest standards from day one. There were ideas and discussions of adopting lower standards; we had people who said we could do this more cheaply … We just said no. If we’re going to err, we’re going to err on the side of being too cautious. I said it very clearly–this may have a bad outcome. We have to be able to accept that.”  So from the operating room to the executive suite, there was a sense of responsibility and confidence at EUH that the rest of the country seemed to lack.

 

“The media attention was off the charts,” President Fox lamented. “We thought it would be X. turned out to be 10X.  It was major sideshow [on campus].”  He explained a few of the public’s divergent perspectives, “Some had a vision of the Ebola patient coming in on a concourse at Hartsfield, getting off the plane , getting on the trains, sitting there at baggage claim, and getting in a cab and then coming here.”

 

The public imagination is boundless. It hungers for black swan stories and even apocalyptic plagues. We have become what sociologists Anthony Giddens and Ulrich Beck call a “risk society.” I call it an “obsessive-compulsive” society.  As both a social scientist and someone who has been professionally diagnosed with mild OCD since childhood, I do not apply the label lightly.  One of the ways I have managed my tendency to speculate ad nauseum is to stop ingesting sensationalism.  Simply by replacing toolbar links to websites that cover celebrities and shootings with those that feature healthier interests, like discoveries in archaeology and neuroscience, I have stopped visiting the damaging sites altogether.

 

People are always surprised that as an anthropologist, I work with hospital executives.  I give major credit to these leaders, especially Director of the Emory Center for Critical Care Dr. Timothy G. Buchman, for understanding the need to explore the culture of biomedicine, and the broader culture in which we practice biomedicine.  Emory may not have been able to predict the black swan from the Black River any better than anyone else, but the hospital understood that Ebola does not mean the Black Death.  It was prepared but not paranoid, unlike the unprepared and paranoid public.  Rather than entertaining irrational fears and compulsively consuming news that exploits those fears, we need to look to intelligent, informed leaders like those at Emory Healthcare–who prepare for the worst but expect the best.

 

Laura Kathryn Jones, PhD

Postdoctoral Fellow

 

Emory University

Department of Psychology

36 Eagle Row

Atlanta, GA 30308

 

lkjones@emory.edu

 

 

 

Gamal Hassan: “Stoker’s plight: Is Murderous Instinct Nature or Nurture?”

20 Dec, 14 | by Ayesha Ahmad

A review of the film “Stoker” USA 2013 directed by Park Chan-Wook

Mental illness and its impact on individuals and families have inspired film-makers from all around the world. “Stoker” directed by the visionary film maker Park Chan-Wook (of “Old boy” fame, http://en.wikipedia.org/wiki/Oldboy_(2003_film) is a family drama with a different twist.

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