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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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 >>>

Vicky Phelan says doctors give her ‘dirty look’ due to campaigning

Cervical cancer campaigner Vicky Phelan has criticised the “paternalistic, misogynistic” attitude of many in the medical profession.

Ms Phelan was diagnosed with terminal cancer in November 2017 having been received incorrect false-negative smear test results in 2011. She believes many doctors regard her as a “b**ch” and she gets “dirty looks” from some doctors who regard her as “that woman”.

Read the rest of the story here in the Irish Times >>>

Never paint for wealthy folk, only for the poor

Images from The Magic Paintbrush & the film of Christ Stopped at Eboli

I sometimes finish the series with a “bedtime story” reading of Julia Donaldson’s genius version of the Magic Paintbrush. Following our encounters with structurally disadvantaged patients in the work of Carlo Levi, Mikhail Bulgakov, an essay by my grandmother, and John Berger’s account of John Eskell’s work in St Briavel’s, I say something along these lines:

In your medical career, you may well encounter your own Gagliano- / Gorelovo- / Yorkshire Dales- / Forest of Dean-like disadvantaged groups, and the overarching system / society (the Emperor) may well try to turn you away from being overly concerned for them. Whether you use your paint brush (licence to practise) like Shen to act and like Levi to also reflect on their experiences, just make sure that at very least you don’t turn your back on those most-in-need groups … except where it is temporarily to protect yourself & your own health from too much wear and tear, of course.

A day in the life of a GP: Jennifer O’Connell spends the day with GPs

From the Irish Times >>>

Overworked, under-resourced and burning out, or overpaid, understretched and privileged?

“What I find unhelpful about those perceptions [about GPs] is that most of what we do is not measurable. We don’t know how many suicides we might have prevented by breathing exercises or just by listening. We don’t know how many heart attacks or strokes we’ve avoided by checking someone’s blood pressure or getting them to stop smoking. We don’t know how many crisis pregnancies we’ve prevented. That’s the stuff you can’t measure.”

Read the rest >>>

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.

From Maggie O Farrell’s I Am, I Am, I Am

This extract from Maggie O Farrell’s brilliant I Am, I Am, I Am – Seventeen Brushes With Death, was published in Time magazine, ‘adapted’ from the ‘Abdomen 2003’ chapter of the book:

“Get up,” were his first words to me. “Let me see you walk.”

I wish now I’d left there and then, but at the time I was so astonished I complied.

“There is nothing wrong with you,” he pronounced, after he’d seen me take two steps. “You will have a normal delivery.”

I started to ask for clarification but the consultant — we’ll call him Mr. C — talked over me. Caesareans were a cult, he said, a fashion. I had been reading too many gossip magazines. I assured him this was not the case but he shouted me down again: Did I realize that Caesareans constituted major surgery? Why had I allowed myself to be swayed by celebrities? Did I doubt his medical expertise? What was wrong with me, that I was so afraid of a bit of pain?

The rest of the extract can be read here >>>

http://time.com/5113186/maggie-ofarrell-childbirth/