Session #5: Looking Back (at institutions that failed us)

These notes on the fifth session are written by one of the participants, summarising our discussions of Celia de Fréine’s Blood Debts & Hanna Greally’s Birds’ Nest Soup.

I was … very affected by the texts we looked at this week: the narrative accounts from a patient’s point-of-view really spurred my inner empathist, and, by the end of ‘Blood Debts’, I personally viewed the doctors and medical professionals as incompetent or even villainous. I believe strongly that this is what Medical Humanities really brings to our medical education. TV shows often paint this idea of doctors who, despite their smarm and snark, only need critical thought, smarts and perhaps a tiny little bit of luck to end up as the celebrated hero (or anti-hero) of their respective narratives (think House M.D.,Grey’s Anatomy, or The Good Doctor). Outside of perfectly wrapped 45-minute storylines, however, other narratives exist: those of the long-suffering, patient patients, mistreated by medical professionals, ever-wary, ever doubtful. How can we be alienating the very people we have sworn to help? It certainly becomes impossible to ignore this incongruity when stories and poems force us to consider their perspective.

Blood Debts by Celia de Fréine

> This week we looked at Blood Debts by Celia de Fréine, a translation of Fiacha Fola, a sequence of [Irish language] poems by de Fréine describing her experience of being one of 1600 Irish citizen infected with contaminated blood products in the 1970s.

> We began, however, without any knowledge of the context as we went into the first poem: ‘chalice of my blood’. This was a reflective poem acknowledging there seemed to something congenitally wrong with the poet (suggested to literally be her blood), and lamenting on what what she she could have done differently should she had known. She concludes that she would have not done anything differently. She invokes religious (Greek/Roman) imagery that elevates the concept of marriage to mythic proportions and seems to celebrate her right to have the partner and children that she wants.

> In the second poem, ‘miracle play’, heavy dream-like imagery is used, with references to religion and that of plague as she watches a biblical play. There is imagery suggesting the concept of something sinister hiding within something pure, and the concept of dramatic irony as a literary technique—originally used in Greek tragedy, by which the significance of a character’s actions is clear to the audience although unknown to the character—is introduced in her understanding of the spread of disease, unbeknownst to the biblical characters, and harks back to the preceding poem to the concept of the poet’s present self looking at her past choices in retrospect.

> The next poem, ‘september – month of birthdays’ recounts the birth of her second child and the administration of Anti-D (Rho(D) immunoglobulin (RhIG)). There is references to complications in her child’s birth, with his birth being breech instead of head, and references to her child not crying. There is also a sense of misplaced trust in the hospital/medical practitioners, with some subtle doubt being suggested as to whether they are acting in her best interests. Particular emphasis is put on her injection of Anti-D.

> The next few poems describe how she believes she is getting sick and jaundiced. She is placed in a situation where her doctor does not believe her symptoms and self-diagnosis and is dismissed by the doctor as ‘run-down’. This continues on with various accounts of the paternalistic attitude of doctors, from obstetricians to specialists who seem indifferent to her worsening illness. Eventually she is informed of the Anti-D scandal on the media, but despite her efforts to find out more, her concerns are continually sidestepped by upper management. Her initial doubt surrounding healthcare professionals evolves very much into anger and blame and they are painted as clear antagonists in her narrative.

> What Blood Debts does excellently is highlight the communication breakdown between medical practitioners and patients, especially when there is a mistake make by the practitioners. From the dismissiveness of first-line primary healthcare practitioners to the evasiveness of upper management, the medical field is depicted as having a toxic attitude of evasion and paternalism that [reflects] a lack of respect and dignity for its patients. Although occurring in 1977, the Anti-D scandal only became public in 1994—almost 20 years after it occurred, and de Fréine’s account is one of 1600 Irish citizens who were affected.
>

Hanna Greally’s Birds’ Nest Soup

> We ended by taking a look at an introductory excerpt from Bird’s Nest Soup by Hanna Greally, explained subsequently by a podcast we listened to as an autobiographical account of her institutionalisation in a mental hospital against her will, without the legal capacity to have herself discharged. To bring together all the sources we looked at in the tutorial, we considered the concept of institutionalisation: not only as a synonym for ‘incarceration’, but in its sociological meaning—the process of establishing something as a norm in an organisation or culture. We considered the idea of the institutionalisation of medicine and the possible implications that that has on the our future role as doctors-to-be; how the hallmarks of institutions—such as hierarchal systems of bureaucratic management, strict systems of conduct, and depersonalisation—can have a detrimental impact on the doctor-patient relationship.

> I have included some articles for anyone who is interested in further reading around the texts. The first explains the details of the 2018 CervicalCheck scandal, which we noted bares shocking similarity to the Anti-D scandal, the second is a blog post by a recently qualified doctor from the US about the concept of institutionalisation and the reality of real world practice in corporate medicine, and the final article is on paternalism and the doctor-patient relationship.

> CervicalCheck scandal: What is it all about? (The Irish Times, 2018)
https://www.irishtimes.com/news/health/cervicalcheck-scandal-what-is-it-all-about-1.3480699

> How the Institutionalization of Medicine Has Destroyed the Doctor-Patient Relationship (Shlifer, 2016)
http://in-training.org/institutionalization-medicine-destroyed-doctor-patient-relationship-11491

> From Paternalism to Partnership (The Irish Times, 2001)
https://www.irishtimes.com/news/health/from-paternalism-to-partnership-1.316916

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Connecting words and images at the National Gallery

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After a break for midterm & a reading week, we were back and as arranged met in the foyer of the National Gallery.

Usually when I bring a group to the Gallery, it’s for a creative writing exercise whereby I get them to choose a portrait from the collection and imagine it’s of a patient. I ask them to write a response of some sort to that particular patient’s situation. However, this module is about (creative!) reading, so I had a different plan in mind.

First, though, I had to do the weekly ‘Paudeen’ reading. I guided them through the various sections of the gallery to Yeats’ ‘The Singing Horseman’ and sparing them the embarrassment of having to recite aloud in public, I read the poem once through for them. Possibly just as embarrassing, actually. (Will have to get them to read it on their own next week.) I mentioned that I associated the ‘Singing Horseman’ painting with ‘Paudeen’ – hinting at what was to come.

Next, I brought them to the Zurich Portrait Prize exhibition, mentioning for later reference that here they’d find the only really contemporary work that’s in the Gallery at the moment. Specifically, in order to connect with our previous module and with medicine, I showed them Fionn McCann’s ‘Cézanne’s Apple’, a photograph of artist Brian O’Doherty. (Fionn’s medic mother, Brenda, did her art history doctorate on Brian’s work. Fionn’s medic dad, Seán, was our coordinator for the medical humanities module up until a few years ago. Fionn’s portraits of general practitioners at work hang in the halls of the TCD Biosciences building where these students spend most of their days these days.)

Next we convened in the amazing courtyard between by Joseph Walsh’s ‘Magnus Modus’ and ‘Finding Power’ by Joe Caslin (Wow!) for a briefing. I explained we were in the Gallery to explore the relationship between word & image. By way of example, I showed them Paul Durcan’s ‘Crazy About Women’ book, and read his poetic response to Jack Yeats’ ‘In the Tram’ painting.

I explained that I had reservations about the concept of the ‘Crazy’ project when it happened (so long ago … before they were born?) and it prompted me to organise a very different exploration of the relationship between word & image.

The Bridges & Crossroads project involved getting a group of four living Irish poets – Katie Donovan, Brendan Kennelly, Catherine Phil MacCarthy, Micheal O’Siadhail  – to make a selection of poems from the Irish canon (that is, by dead poets) and read the selection to a group of living Irish artists who were then asked to respond to one of the poems in a visual work. (I wanted to deconstruct Durcan’s divilment! In the end, my divilment was further deconstructed by Alice Maher’s contribution to the exhibtion, wherein she refused to respond to someone else’s words as if art was only capable of illustrating the great literary works, and instead chose to, well, paint a poem.)

I explained that I didn’t expect them to either write a poem or make an image, but instead to take a poem each from the batch I had with me and go find an image that they felt resonated with the poem in some way. I gave them a poem each – with medical connections – by among others, Katie Donovan (‘Marked’), Brendan Kennelly (from ‘The Man Made of Rain’), Angela T. Carr (‘CAT Scan’), Karen J. McDonnell (‘A Bad Dose’), Philip Brady (‘Diagnosis’ & ‘Respiratory Failure’), Leanne O’Sullivan (‘Tracheotomy’) and some fella called Micheal D. Higgins (‘The Crossing’).

I suggested they read and reflect a little on the poem they got, and then just wander about the Gallery checking out the art and seeing if anything jumped out at them as connecting with their poem, and to come back when they were ready, to tell us all how they got on, read their poem, talk about their choice, and show us a snap of the painting they had chosen. (No one chose a three dimensional piece.)

They did just that.

As anticipated, we discussed – arising from the connections – different aspects and themes of the poems than we might otherwise have done – especially visual elements; but we also ended up discussing how different aesthetic styles are picked up in both art and writing (the more abstract the poem, the more abstract the art chosen in some cases).

We heard how some people found very obvious and quite literal representations of their poems, while others struggled to find anything, and still others were too spoiled for choice and changed a few times.

One students’s initial reading of Katie Donovan’s ‘Marked’ brought her to one painting (the portrait of Maeve Binchy and her husband in the Zurich exhibition?), but as she walked on she saw another painting (involving an infant) that completely changed her reading of the poem and so she opted for that painting and reading instead.

For two of the more dense poems, I actually gave them to two different people each, and it was interesting to see the similarities and differences between the choices made for the same poem by different readers. One student thought of a song first as they read the ‘CAT scan’ poem by Angela T Carr, Massive Attack’s ‘Voodoo in My Blood’, and that influenced their choice of painting.

With the Brendan Kennelly poem I had the excuse to play them a clip from Ailís Ní Ríain’s musical setting of extracts of the poem. (And mention impressionism & abstraction in music briefly.)

 

https://player.vimeo.com/api/player.js The Man Made of Rain (extract) – Ailís Ní Ríain from Ailís Ní Ríain on Vimeo.

Anatomy awesome, awful and aesthetic

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First & foremost to say, it was such a thrill & privilege to be able to conduct – thanks to Siobhan in the department – our session in the beautiful atmosphere of the old Anatomy Building lecture theatre (as photographed so perfectly here by Fionn McCann). Everyone was most impressed … even a tad sorrowful!

Opened up with our group recitation of Yeats’ ‘Paudeen’. They’ll know it off by heart by the end of the module!

Then had quick recap from one of the group on last week’s proceedings.

~

Then I set the mood for this week by reading Tríona Ní Dhomhnaill’s ‘The Mermaid in the Hospital’ as translated by Paul Muldoon. (“It was the sister who gave her the wink / and let her know what was what.”)

~

Then, somewhat unusually, I gave a sort of lecture on anatomy as a human pursuit and its significance in medical training – based on an essay I wrote for the ‘Irish Medical Times’ years ago when the Anatomy department was moving from its charming, nineteenth century home to the shiny new Biosciences building >

https://arsmedica.wordpress.com/2011/08/02/feature-on-anatomy-building-in-trinity-college/

The idea is that perhaps to ensure the students adopt the appropriate attitude towards the privilege that it is learning from cadaveric dissection, some civilising influence of the aesthetic on display in the old building (architecture, art, history) needs to be / is being replaced by comparable influences in the new facilities – the orientation programme, the relatives room.

~

Keeping it somewhat personal, I told them about an old friend, Max Aguilera-Hellweg, who sat in this very room as a first year MATURE medical student in 1998/99, but who transferred back to the USA for the rest of his degree because of a dispute with the School arising from conflicting views of his book ‘The Sacred Heart’, which he had just published the year before. I read and analysed extracts from Max’s book, highlighting how his interest in medicine arose (a photographic assignment that led to an obsession) and his resulting intense, artistic fascination with representing the most full-on images of the workings of the body as revealed by surgery.

… Far from getting sick, I felt what I can best describe as awe. Photographing my first surgery was so foreign to any of my previous experiences that I couldn’t place it. I couldn’t compare it to anything. It is one thing to know there is a spinal cord in the hollow of your back; to see one for real is altogether different…

The cardinal glow of oxygenated blood reminded me that there was a man in there. A thick, milky-white strand covering the nerve tissue that stretches from brain stem to tailbone, splitting off into minute and multitudinous nerves, producing the sensations of heat, cold, pleasure, pain; the dura of the spinal cord lay revealed. I saw the painting above my grandmother’s bed. The one I saw as a child waking up from my nap. The one of Jesus. His heart bleeding, wrapped in thorns, engulfed in flames.

I realised I was in the presence of the most intimate, most vulnerable, most inviolate thing I had ever seen. The spinal cord had never seen light, wasn’t meant to see light, and at this moment was bathed in light. My first impulse, I must confess was to spit. To defile it in some way. Bring it down to my level. I didn’t, of course, but I felt I was in the presence of something so precious, so amazing, so powerful, so pure, I couldn’t bear the intensity.

“What is that?” I asked. “What’s it made of?”

“It’s like a sausage,” the surgeon said, “with toothpaste inside.”

 

We discussed the heightened language and thinking here; the artistic impulse; the impact such descriptions have on a reader, particularly whether or not they can be said to have benefits for medical student readers; we debated why Max’s impulse was to spit (including wondering was it actual!); we discussed the surgeon’s disabusing and mundane reply, in terms of professional distance and general normalisation.

Where before [as photographer] I searched the eyes of a man [for his soul!], the wrinkles of his clothes, the wear and tear of his shoes, I look now in the recesses of his flesh, the colour and texture of his liver, the markings and capacity of his lungs.

We discussed our impressions of Max from the extracts we’d read and how suitable his motivations were for someone becoming a doctor. We got into a detailed discussion about empathy.

~

Then we read and analysed extracts from Sinéad Gleeson’s essay ‘Blue Hills and Chalk Bones’.

We discussed how the suddenness of the migration from the Kingdom of the Well to the Kingdom of the Sick is handled (“It happened quickly, an inverse magician’s trick: now you don’t see it, now you do. From basketball and sprinting to bone sore with a limp. Hospital stays became frequent, and I missed the first three months of school four years in a row.”); the unbelievable trauma to the body and soul some treatments involve; how quickly a patient, even a young patient, become conversant if not fluent in the language spoken in the Kingdom of the Sick.

We went into some detail on the particular impact of physical difference on young people (“I got used to the limp … but gained a new self-consciousness… What I felt more than anything was overwhelming embarrassment. Ashamed of my bones and my scars and the clunking way I walked.”) and how if it’s difficult for a doctor to properly empathise with an adult patient, it can be even more difficult when the patient is a young person or a child. (Though some of them have thicker skin than others, was a point that was made.)

We discussed the clinical aspects of acne and blushing.

There are a couple of particularly harsh doctors portrayed in Gleeson’s essay, and we discussed how prevalent their behaviour might be in healthcare settings these days and whether or not efforts were being made to reduce the instances of such ignorant behaviour:

I explain this to the orthopaedic doctor, this man I’ve never met, and he does that thing I’m used to male doctors doing: he tells me I’m overreacting. A rotating blade is slicing into my flesh, but I need to calm down. When my mother starts to cry, he demands that she leave the room. Fifteen minutes later, I plead with him to stop and he finally gives up, annoyed.

And:

On an early visit to the surgeon, to check my spine for scoliosis, I was asked to wear a swimsuit. Mortified, I cried all through the exam, and the doctor, growing impatient, threw a towel over my lower body.

‘THERE, is that better?’

It wasn’t. I was a self-conscious girl being humiliated for her sense of shame.

Perhaps understandably considering her analysis and perspective, Gleeson summarises perfectly the lop-sidedness of the relationship, particularly as it was back in the 80s:

The Doctor patient relationship had its own imbalances. I have never forgotten the sense of powerlessness in instruction: lie down, bend forward, walk for me. I have felt it counting backwards from ten under the stark lights of an operating theatre. Or when skin is sliced cleanly through. You are in someone else’s hands. Steady, competent hands – hopefully – but the patient is never in charge. The kingdom of the sick is not a democracy. And every orthopaedic doctor who examined me during those years was male.

We discussed the difference between Gleeson’s language / perspective and Aguilera-Hellweg’s.

A variety of analyses were put forward on this idea: “Our bodies are sacred, certainly, but they are often not ours alone… we create our own matryoshka bodies, and try to keep at least one that is just for us. But which one do we keep – the smallest or biggest?”

We noted the empathy behind her observation of another person in Lourdes hoping for a miracle: “He twitches occasionally but is otherwise motionless. There is drool on his face, and I want to say something to him but can’t.”

Also the pathos in: “This is the breakdown of bones, the slowing of a heart, the confinement of our own bodies: a being that once sprung into the world, vibrant and viscous and pulsing with life.”

~

Finally, we read and discussed Doireann Ní Ghríofa’s poem ‘To the Stranger Who Will Dissect My Brain’ (unpublished) and the students who spoke were extremely moved and impressed with the final description of the “exchange” that happens at the end of the poem between the remains and the (say) anatomy student: “Your brain will blaze bright,// alive and wild, and I,/ I will be the light.” Not only capturing the awe felt by medical students (& some photographers) but also the enlightenment – the final gift of the person who has donated their remains to medical education.

One student spoke about how the poem captured in a way that she could never achieve herself (and that no other language register could, perhaps) that feeling of awe that some students experience when they begin their anatomy dissections.

~

And to top it all off, the students were able to look around the old Anatomy Museum and get a sense of the history – betimes quite freakish and grotesque – of their studies.

Doctors Turn to Poetry to Relieve Stress

“To be able to re-engage with the human side you need a catalyst,” says Dr. Crossman, who recounts that during his medical training—long before the book came out—he used to read poems himself. “I felt hugely energized by reading them,” he says.

Some young doctors say the poetry book is helping them. Lewis Hughes, age 23, graduated from medical school in 2017 and is currently in Dundee, Scotland, in a two-year rotation of clinical training. A poem he found very meaningful is Bernard O’Donoghue’s “Going Without Saying,” which affirms the value of simply telling someone how much we like them. He says it is heavily related to his work.

https://www.wsj.com/articles/doctors-turn-to-poetry-to-relieve-stress-1519614120