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

Advertisements

#4 Living (while bleeding)

These notes on our fourth session are brought to us courtesy of one of the group, Diane Doran.

‘While Bleeding’ by Doireann Ní Ghriofa

The poem has many layers, hinting at: –
1. Social status (too expensive/vintage shop)
2. expectations on women to be/look a certain way (blusher on cheeks/lipstick on tissues)
3. Shame many women carry about what are normal is a normal bodily function
4. The poet uses red to sum up the female experience – red an emotionally intense colour.

After the poem we discussed how Viagra was once discovered to be effective or period pain however due to apparent side effects was shut down – It was agreed that we should look further into this – does it draw parallels between the papacy and the pill debate recently?

Conversations with Friends by Sally Rooney

Conversation with Friends brought up some discussion on: –

Silence in pain – why are women expected to put up with pain?

What is stopping women from asserting themselves and breaking out of the patriarchy?

We touched on the theme of rich v’s poor – wealthy people are more resourceful due to money and as such will always find a way to get ahead – an inequitable system is leading to an even bigger divide amongst people and this divide becomes more apparent when we consider different races & genders in society.

The importance of consent – twice the consent of the patient in the text wasn’t sought

We talked about the importance of considering the perspective of the patient – in the text she stated both she and the doctor hated each other – What are the elements that will potentially lead a person to feel this way about their caregivers, to have no trust established between them?

The doctor in the text seems oblivious to the patients pain – where do doctors need to draw the line with respect comforting patients

Discussed the importance of giving patients information about what it is that is happening to them.

Discussed the societal expectation to keep your emotions locked up until appropriate time – what is causing this disability when it comes to expressing ourselves? – leads to repressing our true history when in a hospital setting – again comes back to putting up with pain & silencing ourselves.

Some elements of shame expressed – unprotected sex/sex outside of marriage – the girl felt embarrassed to disclose the full details of her sexual experience to the doctor.

Talked about women’s paraphernalia for periods and how men need to be more open and receptive to what women’s body’s are capable of and not add to the shame by keeping it a secret.

‘Notes on Bleeding’ by Emilie Pine, from Notes to Self

Again the theme is around the shame of having a period – hiding it from others – the idea that it is dirty and somehow women/girls are somehow stained.
Focuses on the expectation of women to look & act a particular way (shave/apply foundation)

From my perspective – i found it ironic that we read a redacted text – why is it embarrassing for us to sit and read/listen to the full no holds barred text? – as medical professionals I feel the ability to not get embarrassed by the things we hear will be a very important skill.

Selma Blair says doctors dismissed symptoms of multiple sclerosis as side effects of being an exhausted single mother

The actor has said that doctors had long dismissed her increasingly dire medical symptoms as her simply being “dramatic,” even as she grew progressively more afraid that she might actually be dying.

Though it’s lacking in any more detail in relation to what Blair said about the doctors, you can read the source for this post as reported on the Women in the World website here >>>

And there’s a full feature on Vanity Fair here >>>

Session #2: giving birth

I read two short poems by Doireann Ní Ghríofa: ‘I carry your bones in my body’ (“––– nobody ––– nearlybody ––– my small someone.”) and ‘Jigsaw’ (“how the arch of your foot / fit the hollow of my palm …”)

~

We then read an extract from the chapter, ‘Birth’ from Anne Enright’s Making Babies (2004), discussing it as we went:

– the frankness of the writing, as in, for example, the description of what it felt like after her waters were broken; and how unlikely it would have been that such a frank text would have been published or even written a generation ago

– the subject matter being not what some people would consider “worthy” of literary treatment, lacking literary potential: “to compare dressing-gowns – it took me so long to find this one, and I am quite pleased with it, but when I get up after the meal, the back of it is stained a watery red.”

– the humour, as in the description of men sneaking out from behind the curtains to watch the replay of a goal from a Portugal v France match

– the exaggerations for effect & how tolerable they are, as in surely not all the men were interested in the football

– the willingness of the writer not to endear herself to the reader, the importance of that in her efforts to be truthful; for example, in relation to one woman: “I am trying to be sympathetic, but I think I hate her. She is weakness in the room.”

– the crudeness (= honesty?)

– the idea of when labour starts officially: “I am in what the Americans call pre-labour, what the Irish are too macho to call anything at all. ‘If you can talk through it, then it’s not a contraction,’ my obstetrician said …”

– the believability of some of the states described

– the detail of her observations of her fellow unit C occupants, at times cartoon like

– “The room is full of miracles waiting to happen”

– the tenderness of some of her descriptions, yet even within those the signature blunt style: “When I put my hand on it, there is the baby; very close now under the skin. I just know it is a girl. I feel her shoulder and an arm. For some reason I think of a skinned rabbit. I wonder are her eyes open …”

– the visceral vividness of her descriptions of pre-labour and of the ward itself and what her fellow occupants

– the beauty & power of the writing about the build up to the delivery and the delivery itself and the newborn baby (with echoes of Ní Ghríofa’s poem: “I laid her on my stomach and pulled at my T-shirt to clear a place for her on my breast.”)

– the immediate return to full-on description of the facts: “smeared as she was with something a bit stickier than cream cheese”

– the poetic nature of the final scene which in a way echoes the birth scene that precedes it, only in this case Enright-the-mother is being “delivered”, speechless like a baby, by the nurse who saves her from drowning in the amniotic fluid of the shower!

– “she is saturated with life”

~

Finally, we read and discussed the chapter, ‘Abdomen 2003’, from Maggie O’Farrell’s I Am, I Am, I Am in which she describes her experience of an emergency Caesarean section and the prelude to it.

– the unacceptably abrupt interruption of the registrar, who failed to allow MF to finish her “speech”

– the physical appearance of Mr C, the consultant, as described by MF, the details she has chosen to draw attention to perhaps reflecting the impression she got of him and wants us to get: “tall man with severe comb-tracks in his black hair”

– the prototypical nature of Mr C, the consultant’s behaviour: “to yank me bodily up out of my seat” … “‘Get up,’ were his first words to me …” … “‘There is nothing wrong with you,’ he pronounced …” … “talked over me…” … “What was wrong with me, that I was so afraid of a bit of pain?” … “‘Do you have any proof?'” …

– the believability of this given he is such a textbook version of the rude & brusque doctor & a perfect representative for the patriarchal nature of certain parts of medicine

– the dynamic between the consultant & the registrar, and how this might point to the negative influence he might have on all the team he is in charge of

– the factors in why MF didn’t do or say what she knows she should have to call a halt to Mr C’s patronising, insulting, unethical & bullying behaviour

– the poetic quality of having the stranger in the operating theatre represent everything that Mr C & the system wasn’t about healthcare: simple, human attention & empathy & comfort

‘Outside the operating theatre, I burst into tears’: Gabrielle Cummins on experiencing a panic attack during a medical procedure

From the Irish Times >>>

“Will I get your mam?” asked the nurse.

“She’s not here,” I spluttered in between tears, “she had to get back to our shop to work.”

Those lines are from my diary, written when I was 13 years of age. I had just been admitted to hospital with a threatened burst appendix and was about to be operated on to have it removed. My 13-year-old self writes: “When I’m brought to the room outside the operating theatre, I suddenly become very frightened and burst into tears. The nurse tries to console me. I’m given something to calm me down and a short time later, all I remember is being wheeled into the operating theatre where I comment on the great view of the Rock of Cashel out the window and then I fall into a deep sleep. I wake up in the recovery room, calling once again for my mother and, thankfully, this time she’s there.”

Read the rest >>> 

Final session, in St James’s Hospital

Two things got us off to a bad start for this one:

  1. This was meant to be last week’s session so that all the social & political material of last week would be the climax, but it wasn’t logistically possible.
  2. The transport from Trinity Biosciences Institute was late & some students got lost which meant we were very late getting started & therefore had to cut a few texts that I’d planned to read with them 😦

We met at the entrance to the hospital & I briefed them on a small exercise I wanted them to do: inspired by Danielle Ofri’s idea of literary rounds, I gave them each the text of a different poem/text & asked them to read it to themselves for a few moments. Each poem was set in a hospital. I then asked to make their way at their leisure to the seminar room and on the way to observe as much as they could about the hospital environment connected with, inspired by, or entirely unrelated to the poem they’d just read!

In class, we started with the Yeats poem & tried to recall it without reference to the text. It wasn’t entirely a success, let’s just say.

We then went around the group, with each person reading aloud the poem they had received and then sharing with the group their observations about hospitals/ the hospital we were in / the hospital in the poem. Each contribution led to further discussions & chats & recollections.

The poems were Leanne O’Sullivan’s ‘Tracheotomy’, & ‘Leaving Early’, ‘In the Way’ by Elaine Feeney, ‘Postcards from a Hospital’ by Doireann Ní Ghriofa, ‘Visitors, Kidney Ward’ by Enda Coyle-Greene, ‘Leaving the Ward Behind Me’ by Tommy Lambert & ‘The Chapel Corridor’ by Barry Mitten (both from Climbing Mountains in our Minds, edited by Sylvia Cullen) and Patrick Kavanagh’s ‘The Hospital’.

Bronwen Barrett & Martha Knight of Freshly Ground Theatre

The texts we didn’t get to, but which I distributed nonetheless and which I will be using with a new group next term instead, were Eleanor Hooker’s ‘The Man in Bed Eight’ & the first scene from a new play called the Bold Step by Bronwen Barrett & Martha Knight of Freshly Ground Theatre, which I saw (& was totally bowled over by) at the weekend. (They kindly emailed me the opening scene, which they based on interviews with their mothers about their own births: “M: There was a student midwife sitting beside me, shaking … B: ‘you’ll be grand, you’ll be grand.’ M: I remember turning to this nurse, typical teacher, like, in the middle of the epidural, saying ‘sure, I could be correcting copies”!!!!! 🙂 

I then read a few bits of Danille Ofri’s essay ‘The Poetry Ward’  about introducing poems to the routines of doctors in hospitals. I finished up with a full reading of John Stone’s ‘Gaudeamus Igitur’ & dismissed everyone with best wishes. 🙂 

Truthsaying: The need for honesty from patients & doctors: session # 5

With themes of truth & hope underpinning the session, it being International Men’s Day, we read texts mostly by women about pregnancy, labour, babies and girls!

We started, though, with a run through Yeats’ ‘Paudeen’. They’re getting there. We had a recap on last week, and a summary of Maeve Binchy’s ‘Anna’s Abortion’.

From that we read and analysed an extract from Emilie Pine‘s ‘From the Baby Years’ section of Notes to Self. The extract dealt with the loss of her one and only pregnancy. We discussed how particularly invested Pine was in the pregnancy (“I see that I’m shaking”) and how that comes through in her hope & wishful thinking in the face of contrary information/evidence > “Maybe I am wrong. / Maybe the date is wrong.”

We discussed how despite our ideals of professionalism and standardisation, we nonetheless often sense and operate by other, more human realities >

“I have a moment of hoping this coincidence [of going to the same university as the doctor] will make her well-disposed towards me”.

We mentioned how bizarre it is how we often act contrary to our truths, pretending because of not wanting to reveal our uncertainties or to risk appearing not in control > “I pretend like I’ve done this before”.

I emphasised how honestly Pine was recounting all of this now as the narrator. We discussed the contrast between how Pine is aware of the constraints on the staff when it comes to pronouncing the still growing foetus dead, and her actual anger >

“I am furious. At the situation and, specifically, at them. I am a woman, in grief, and these women will not look me in the eye as a fellow woman and tell me that I’m not going to be a mother.”

We discussed the possibility that shame felt by the midwives was behind their failure here. We discussed the blunt honesty of Pine’s admission of how she felt observing the pregnant women outside the National Maternity Hospital > “I would be a better mother. I deserve it more.”

I emphasised how honest a writer she is in her retrospective analysis of her actions and thoughts >

“I am so deep into this that I don’t even see the problem with comparing not being pregnant to a serious illness.” And I therefore suggested she was a welcome/useful voice to hear in the context of how complex the doctor-patient relationship can get, with two flawed “entities” contributing to it. (It is too often presented over-simplistically as rude doctor failing innocent patient.)

~

We moved on to Maggie O Farrell‘s I Am, I Am, I Am, specifically an extract from the chapter called ‘Abdomen 2003’ that recounts the birth-plan for and delivery of her child. (I used the adapted version published by Time magazine.) We discussed how incredibly rude (almost literally: not credible) the consultant, Mr C, was. I paused on and parsed the sentence: “I wish now I’d left there and then, but at the time I was so astonished I complied.” I asked whether or not O Farrell was being as retrospectively honest as Pine here. Was it just astonishment?

[I diverted for a moment to read this important passage from Pine’s last chapter:

The stinging irony, of course, was that my entire talk was about ways that women are intimidated into silence. And here I was, with a platform to speak [having just given a lecture on the silencing of women about rape], finding myself with the same difficulty. The Faculty Chair’s comment [“I find it hard to reconcile how you look and your manner with your subject matter. I mean you look … I don’t want to use the word ‘cute’ but …”] implied that I shouldn’t be talking about rape. It is more than just tedious, this women-should-be-seen-but-not-heard attitude. It is a way of telling women to back to where they belong, back to being silent. I am gobsmacked that I still encounter this attitude in the university. And I am, most of all, weary of having to come up with something in response. I should have called him on his misogyny. But in the moment that he said it, I did not even allow myself to think about the implications of his comment. I wanted to look professional. I wanted to seem strong. I wanted to move on. As so I side-stepped. Which is, of course, a kind of silence.

I suggested Pine’s analysis was possibly true for the O Farrell situation too.]

The reappearance later in the episode of Mr C as O Farrell’s “saviour” was useful in setting up the idea that sometimes the rude doctor is all we’ve got, and maybe we just have to learn as patients how to deal with it, how to communicate with them to protect ourselves.

We contrasted, as O Farrell clearly intends, Mr C with the stranger in beige scrubs who comes to her emotional rescue while “a room full of people … are frantically working to save [her] life.” > “He stepped towards me, away from his wall, and took my raised hand. He enfolded it in both of his. I gazed up at him mutely. His touch was infinitely gentle but firm and sure. He stayed with me while they stitched and stapled me together again; he took the weight of my head and shoulders as they lifted me from the operating table onto a gurney.” [Italics added.]

~

We then read & analysed a story written by a man, Yay! (albeit a Michael Longley type of man > “I’m finely attuned … to the feminine side of the men I like. I really don’t like men who are pumped full of testosterone. I like my men to have a large dose of the feminine virtues.”) ‘The Girl with a Pimply Face’ by William Carlos Williams is one of my favourite texts to discuss with medical students because at first the male doctor’s sexualised descriptions of the teenager he meets on a house visit (“She had breasts you
knew would be like small stones to the hand”) make him seem just “creepy” (as was said today). We analysed the story in considerable detail and discussed too many things to summarise here, but with similar themes as above, of honesty, truth telling, self-awareness … and the sources of hope amidst all the negativity and human failure.

The girl with acne acts like Pine & O Farrell wish, with hindsight or in the very moment, they had acted.

The Williams story is set in a poor, immigrant neighbourhood where people from socially disadvantaged situations do what they have to and can to survive. The doctor too. He (like Sassall in Berger’s A Fortunate Man) in the identifies more with them than he does his colleagues, and he sees in the teenager a sign of something that offers hope. (“She was just a child but nobody was putting anything over on her if she knew it, yet the real thing about her was the complete lack of the rotten smell of a liar.”)

~

To emphasise the socioeconomic angle of this (and of the Berger text from last week), I read the only poem of the week, Julia Donaldson’s brilliant version ofThe Magic Paintbrush (with equally brilliant and clever illustrations by Joel Stewart, which I showed them as I read):

"He slips the brush into her hand
And tells her to be sure
Never to paint for wealthy folk
But only for the poor."

I say straight up to them, emulating as best I can the girl with pimples: what if the paintbrush is your medical qualification and what if we told you only to treat poor people. That stirs things up a good bit. I tell them class is over.