Archives for the month of: November, 2013
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“Do you know who I am?”…

November 28, 2013 //
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…which is a quote from Anna Quindlen, the Pulitzer Prize winning journalist, novelist and essayist.

But her question does not in any way relate to her hugely impressive CV and achievements. Rather, it stems from her encounters with healthcare professionals, which has prompted her reflections on the extent to which she was seen as an individual in that context, as a person rather than as ‘just another patient’.

The writer was recently invited to deliver the Humanism in Medicine lecture at the Association of American Medical Colleges (AAMC) annual meeting (http://humanizingmedicine.org/anna-quindlen-advises-physicians/).

Quindlen’s question – “Do you know who I am?” – arose from her experience of two separate medical encounters, both involving anaesthesiologists. The first was patronising (my judgement call), and left her doubtful as to whether he knew anything about her or about her previous history.

The second encounter was a positive one:

“Only a short interchange, yet in some fashion she knew who I was.”

Quindlen continues:

“And I assume she was at least as busy as her male colleagues.”

But gender distinctions are not the point. Instead, what Quindlen wants to get across is that she felt ‘seen’ by one professional, and not by the other.

“She was professional, and she was kind. Oh, what a combination that is in what often seems like a cold and inhuman world.”

Quindlen sees the problems in health care – patients feeling ignored, isolated, patronised – as part of a larger societal problem. Power relationships wherever they occur, and which too often underlie the doctor-patient encounter, ‘foment fear and mistrust and alienation’. She speaks of the ‘MDeity’, doctors as little gods, and is surprised how pervasive this remains, despite huge technological and other advances.

Quindlen’s conclusion is that in the end, the person – the patient, the sufferer – seeks and needs ‘the human touch’, to be seen as an individual, and to be considered as such.

She ends with advice for the doctors she addresses:

  • Try to be present in the moment
  • Acknowledge uncertainty
  • Practice empathy
  • Try to be kind

CQ

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Categories Doctors, Illness, Kindness, Medicine, Suffering

Poetry and the ‘Patient-Doctor Relationship’…

November 26, 2013 //
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I have been thinking about this most unique of relationships, partly in the wake of Medicine Unboxed 2013, and also as I am currently writing chapters for a book on Illness and the Arts.

Jonathon Tomlinson has written a very comprehensive and insightful essay on the notion of the ‘patient’ (http://abetternhs.wordpress/2012/04/09/whats-in-a-name/).

Here, I just want to draw attention to words from those who have expressed their experience of the patient-doctor through their poetry.

Firstly, Raymond Carver, who died as a result of lung cancer, and his poem What the Doctor Said:

‘He said it doesn’t look good

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them…’

Later in the poem:

‘he said I am real sorry he said

I wish I had some other kind of news to give you’

Carver concludes:

‘I just looked at him

for a minute and he looked back and it was then

I jumped up and shook hands with this man who’d just given me

something no one else on earth had ever given me

I may even have thanked him habit being so strong’

This is one of my all time favourite poems. It manages to say so much with so few words – the essence of poetry itself – and within 23 short lines the poem delivers such a strong sense of what the sufferer was experiencing at the ‘other side’ of the desk.

Secondly, to another poet who died as a result of cancer, Julia Darling. The anthology The Poetry Cure, which she edited with Cynthia Fuller, contains much to enlighten those who wish to gain insight into the suffering of illness.

In her poem Too Heavy, Darling directly addresses the medical profession:

‘Dear Doctor,

I am writing to complain about these words

you have given me, that I carry in my bag

lymphatic, nodal, progressive, metastatic…’

‘…And then you say

Where are your words Mrs Patient?

What have you done with your words?

Or worse, you give me that dewy look

Poor Mrs Patient has lost all her words, but shush,

don’t upset her, I’ve got spares in the files.

Thank god for files.’

Finally, also from The Poetry Cure, from Carole Satyamurti’s Out-Patients:

‘My turn. He reads my breasts

like braille, finding the lump

I knew was there. This is

the episode I could see coming —

although he’s reassuring,

doesn’t think it’s sinister

but to be quite clear…

He’s taking over,

he’ll be the writer now,

the plot-master,

and I must wait

to read my next instalment.’

The poets say it all.

I have nothing to add.

CQ

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Categories Cancer, Death and Dying, Doctors, Literature, Poetry, Suffering

Medicine Unboxed 2013…

November 24, 2013 //
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The poster for this conference epitomises the creativity and richly imaginative content that defined the event itself.

I have attended many ‘Medical Humanities’, ‘Health and Humanities’, ‘Medical Narrative’ and such like conferences in the past. Medicine Unboxed 2013 – with this year’s theme of Voice – stands alone as something uniquely innovative and stimulating, as well as both emotionally and intellectually challenging.

The twitter (#MU13VOICE) and facebook feeds are excellent and will give you a real sense of the diversity and substance of the content. Although I could only attend the first day, I was so very pleased to have been physically present for even 50% of the entire programme.

‘Voice’ (full programme – http://www.medicineunboxed.com/2013-voice/) was presented and discussed as the poetic voice (Jo Shapcott and Andrew Motion), the patient (Rhys Morgan), the captured voice (Fi Glover, The Listening Project), the singing voice (Birmingham Medical School Choir, Melanie and Rebecca Askew), the performed voice (Bobby Baker), and the sung voice (in terms of composition and phonetics, and music as therapy, and as an end in itself).

It is difficult to pinpoint exact reasons why I found the conference so refreshing and stimulating. The absence of medical-type presentations contributed, and Sam Guglani et al.’s creative approach to all possible aspects of ‘Voice’ in terms of health and medicine was hugely impressive.

I wonder whether the audience consisted of many non-medical/non-health-care professionals. One thing that irked me was the repeated use of the word ‘patient’. It grated. Perhaps this is because I no longer work in clinical medicine. As an ‘outsider’, ‘patient’ feels like a label that attaches an otherness to those who are ill, whereas in fact, as identified by Susan Sontag, the gap between ‘them’ and ‘us’ is very narrow…

My experience of sitting outside clinical medicine left me much to consider also following the session on the ‘Medical Voice’, in which Iona Heath, Deborah Bowman, Julian Baggini and Charlotte Blease participated. A ‘crisis in empathy’ amongst doctors was highlighted here, and there was much discussion on how medical training could be improved to address this.

I have often been critical of the lack of empathy and compassion that those who are ill have experienced during the medical consultation. I left clinical medicine a few years ago, to explore medical humanities/health and humanities (not quite sure what to call it anymore), and now work as an editor for an organisation that creates books on health and illness for children. We recently advertised for a junior doctor for the role of a medical writer. I was overwhelmed by the quantity (and quality) of the applicants – over 20 junior doctors, all disillusioned by their first years in clinical medicine. Most had no intention of ever returning to the field.

I found this sad, that the system (‘medicine’, the NHS…) had somehow failed them to the extent that just a few years working as clinical doctors made them want to walk away. We are quick to criticise doctors and how they behave, which is sometimes, but not always, justifiable. Yesterday, I found myself in the unusual position of wanting to make a plea for the ‘Medical Voice’, that it might be heard and witnessed too…

My view has inevitably been tempered by my distancing. For a perspective from a doctor within clinical medicine, do check out Jonathon Tomlinson’s response to Medicine Unboxed 2013, which truly reflects a ‘Medical Voice’ that needs to be heard: http://abetternhs.wordpress.com/2013/11/23/burden/

CQ

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Categories Doctors, Empathy, Medicine, Stories

Kate Tempest’s ‘Wasted’…

November 21, 2013 //
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I saw this play at the weekend at The Roundhouse London, as part of its current The Last Word – ‘London’s first ever spoken word festival.’

And what a truly magnificent representation of the power and magic and beauty of words Wasted is. The energy, passion and dynamism of the three performers was also hugely impressive.

Written by the so very talented Kate Tempest, I have thought much about the play since, and have read and re-read the text. Wasted is word-dense, each word carefully chosen to create a piece of art that is thought-provoking, moving, sad, disturbing, funny, and all the while gripping and enthralling.

The three characters arrive on stage and address the audience directly. Immediately, one feels involved, drawn into the stories of their lives, a witness to something significant and vital:

“We wish we has some kind of incredible truth to express.”

“We wish we knew the deeper meaning.”

“But we don’t.”

“We don’t have nothing to tell you that you don’t already know…”

They speak of the city, their home, and the despondency that it and living their lives there has fostered:

“Deserted playgrounds, tramps singing on the street, bleeding gums outside the pub, takeaways and car exhausts and bodies till you can’t see bodies.”

“A city where nothing much happens except everything.”

“Where everyone is so entirely involved in their own ‘nothing much’ that they forget about the everything happening elsewhere.”

It was not always so. The trio remember their teen years, when they ‘lived without fear’, then later ‘got wasted in raves and felt Godlike.’ But as the years pass (they are now 25) “Our eyes got dimmer and our dreams got flattened”, and we “forgot what we was living for.”

They mention Tony, both individually and as a group, who, it appears, died 10 years earlier:

“So you’re lucky. Coz if you was still here, you’d have a habit, or depression, or anxiety attacks, or all three…”

Seeking change and epiphanies that don’t happen, all three are drowning in the reality of their current lives. They also realise that they no longer have anything to say to each other, only a shared and ‘wasted’ past – “we spend life retelling life and it’s pointless and boring.”

Many phrases – “All of us, regretting the decisions we never had the guts to make” – resonate and leave much to consider.

I have not yet decided how the play concluded for me. But then, there can be no definitive conclusion or ending. This is a story about life, about the challenges inherent in living it, and about the choices you can make, or choose to ignore.

“…your dreams are more than just something that came before you shook them off, your dreams are worth pursuing…”

“But you’ll never fly until you’re prepared to jump.”

“Your life is much more than getting wasted.”

CQ

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Categories Stories, Suffering, Theatre

‘Besa: The Promise’…

November 17, 2013 //
1

This is the title of a documentary film that I saw today, the final day of the UK Jewish Film Festival, at the Tricycle cinema.

What a cinematic gem it is, a profoundly moving and authentic piece of art, which is so affirmative, and reassuring, of the goodness that humans are indeed capable of. And more importantly, a goodness and a genuine caring of the other, which transcends that most divisive of forces, religion.

The film tells the story of Albanian Muslims who protected Jews from the Nazis in WWII. Unlike almost all other countries, Albania welcomed Jews during the Holocaust, and we hear the stories of some of the very many Muslim families who sheltered the refugees, despite the inherent dangers to themselves, as well as the those of the Jewish people and their descendants who, as a result of the humanity they received, managed to survive the war.

Albania was the only country where the number of Jews increased from pre-war, approximately 200, to post-war, approximately 2000. It remains a relatively poor country.

Albanians see themselves as just that – not as Muslims or Orthodox or Christians – but as the people of Albania, and all of whom share and enact Besa, an honour code that offers assistance to all those who knock on their doors looking for help.

Besa: The Promise is a gripping and humbling story, which concerns a nation that lost so much during WWII and even more so in the subsequent communist years, but which nonetheless holds steadfastly to the notion of kindness and and generosity towards those in need, irrespective of religion and creed.

CQ

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Categories Families, Film, Kindness, Religion, Stories, Suffering, War

John Tavener…

November 17, 2013 //
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As I write, I am listening to Tavener’s music, some of which I have found relatively impenetrable, but much of which is sublime.

Tavener died earlier this week. He had Marfan’s syndrome, which explains his ‘ethereal thinness’, and had a long history of illness, including a heart attack six years ago from which he almost died.

Tavener recently commented that he had lived longer than anyone, including himself, had imagined possible.

He was 69.

Today, I listened to what came to be his final radio interview, which took place last month from his home in Dorset with Radio 3’s Tom Service (http://www.bbc.co.uk/programmes/b03hk1y9).
In the interview Tavener, who sounded frail, spoke of his physical suffering, and also of his spirituality within the context of such suffering, which constantly informed his writing and his perception of life.
For Tavener, in the context of not knowing what comes after death, faith and doubt co-existed. Such non-knowing necessitated a humbling of the mind, and Tavener, who was deeply religious, believed that life and death, doubt and darkness, all existed alongside each other.
Illness, and particularly the almost fatal heart attack six years ago, facilitated a renewed seeing of the world and 0f Tavener’s place within it, with an enhanced clarity.
Rather than escaping from suffering through his writing, Tavener, throughout his life and career, chose to deal with issues such as death head-on. Thus, his music was informed by suffering, but, perhaps perversely, the creativity thus produced served to energise.
Of late, his music, as stated by the artist himself, became more terse and austere. He expressed a wish to be remembered as an austere composer.
God returned to Tavener in a distinctly different way following his heart attack. This was no longer an external deity, but an internal one. Since then, every piece he wrote was informed by this, and by via negativa – ‘where there is nothing, there is God’.
In recent years, as illness escalated, Tavener felt much closer to the non-knowing, and faith became more complex for him, and much influenced by pain and suffering.
Pain significantly affected his capacity to work, struggling of late to work for more than two hours at a time. Tavener believed that his last pieces were particularly important, not least because of the physical effort they involved. When unable to work due to illness, he described such times as days of darkness. When he could work, a divine darkness was alive within.
Tavener quoted Tolstoy, who believed that one had to suffer to be heard as an artist. The composer clearly subscribed to a similar view.
I was impressed and moved by the clarity of Tavener’s vision himself, and of his life and work. Tom Service commented at the end of the interview that, despite the seriousness and darkness of the topics that Tavener spoke of, the composer smiled as he spoke. Tavener concurred, and laughed at this observation…
CQ
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Categories Art & Suffering, Music, Spirituality, Suffering

Limbo…

November 12, 2013 //
2

I saw the film Philomena at the weekend. I had initially been reluctant to see it, finding the stories that have unfolded following The Magdalene Sisters deeply disturbing and tragic. Yet, the stories need to be told, and their telling needs to be witnessed.

Philomena shares one such story, from an Ireland of the 1950s, where to be pregnant and single was profoundly sinful, with the sinner duly brutally punished in the eyes of Catholic Church by God’s most loyal and complicit servants, the nuns.

The story that unfolds in Philomena is gripping and revelatory, not for the obvious reasons, but because, at least for me, the film made me consider issues around forgiveness – how truly admirable a virtue it can be, and how difficult it can be to achieve.

I thought of Philomena again today, when a poem I came across reminded me of the hidden away graves in the convent where the mothers-to-be were incarcerated.

The poem, Stillborn by Derry O’Sullivan, appears in 3Quarks Daily (http://www.3quarksdaily.com/3quarksdaily/2013/11/tuesday.html) and an excerpt follows:

‘You were born dead

and your blue limbs were folded

on the living bier of your mother…

…The priest said it was too late

for the blessed baptismal water

that arose from Lough Bofinne

and cleansed the elect of Bantry…

…You were buried there

without cross or prayer

your grave a shallow hole;

one of a thousand without names

with only the hungry dogs for visitors…

…Limbo is the place your mother never left…

where she strains to hear the names of nameless children

in the barking of dogs, each and every afternoon.’

CQ

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Categories Grief, Literature, Loss, Poetry, Religion, Stories, Suffering

‘The Convoy of Tears’…

November 10, 2013 //
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I recently came across this poem by Andrew Motion, from 1975.

I particularly love the reference to ‘ruined bedroom’, which epitomises how poetry manages to convey so much with so few words…

The Convoy of Tears

‘When I came home unexpectedly in the mid-afternoon

and found an extra knife and fork still wet and glittering

on the draining board beside your own, I knew at once.

I ran upstairs and called your name in our ruined bedroom

but you had already left. Soon afterwards I saw Margaret

Thatcher taking over the Tory party from Edward Heath,

and one evening — unless I was mistaken — the dead body

of P.G. Wodehouse borne on a tank into the ruins of Saigon.’

Andrew Motion

CQ

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Categories Loss, Poetry

Suffering: the word and the experience…

November 8, 2013 //
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‘I saw three ships go sailing by,

Over the sea, the lifting sea,

And the wind rose in the morning sky,

And one was rigged for a long journey…

…But the third went wide and far

Into an unforgiving sea

Under a fire-spilling star,

And it was rigged for a long journey.’

from Philip Larkin’s The North Ship

The word ‘suffering’ in the title of this blog is intentional and deliberate. However, I am aware that my interpretation of what suffering means may well be at odds with that of others. For me, I see my voyage through life as one demarcated by many diverse and rich experiences. But, as Larkin reflects, life itself is ‘an unforgiving sea’, and living it involves many obstacles and challenges that interrupt and disrupt the passage, a passage where suffering sits equally alongside all other emotional experiences.

Religion, particularly Catholicism, has historically appropriated, and plagiarised, the word. And so, ‘to suffer’ has come to additionally assert some kind of penitential meaning, a necessary experience to be endured for atonement of sins committed.

I am reclaiming the word in a purist and secular sense. I argue that suffering belongs with all the other subjective experiences that define our humanness, all of which contribute to the final sum of what it is to experience life and the living of it, and ultimately what it is to be one’s self.

A friend drew my attention today to a current piece in The New England Journal of Medicine, ‘The Word That Shall Not Be Spoken, by Thomas H. Lee (http://www.nejm.org/doi/full/10.1056/NEJMp1309660).

The word referred to in the title is indeed ‘suffering’. The author considers how physicians tend to avoid the word, judged as being ‘a tad sensational, a bit too emotional.’ He discovers that academic journals and textbooks similarly avoid it. When Lee asked colleagues why they avoided using the word ‘suffering’, one of the comments was that it was not ‘actionable’ for clinicians, which in turn reminded them of their powerlessness.

‘And it makes us feel guilty. Suffering demands empathy and response at a level beyond that required by “anxiety,” “confusion,” or even “pain.”

Thus, the word ‘suffering’ tends to be avoided by the medical fraternity, even though it may most accurately reflect what the patients they are caring for are actually experiencing.

Lee proceeds to discuss the alleviation of suffering, and here our views diverge. Undoubtedly, we cannot be complacent about the suffering of others. However, I believe that the critical first step as compassionate human beings, is to allow for the expression of suffering as an experience that is an inevitable accompaniment of life and living, and to acutely bear witness to what that lived experience is, for others, and for ourselves.

Only then, can we start to consider how it might be alleviated.

CQ

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Categories Doctors, Suffering

UK Jewish Film Festival 2013…

November 3, 2013 //
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A first experience for me, this festival, seemingly the largest european film festival, is on at various venues in London until November 17.

Thus far I have seen two great films.

Firstly, The Lady in Number 6, which introduces us to Alice Herz Sommer, who, at almost 110, is the world’s oldest pianist and holocaust survivor. She is truly inspirational. Charismatic and engaging, her optimism and enjoyment of life is uplifting. She is grateful for her life, all of it, the good and the bad, and for every day that she continues to experience. At 109, she enjoys life and people hugely, and continues to devote time and self to her greatest passion, playing the piano:

‘Music saved my life and music saves me still.’

As one of the co-producers Chris Branch stated when he introduced The Lady in Number 6, this is not a film about the holocaust, but about one remarkable person.

Secondly, Orchestra of Exiles, which was preceded by 15 minutes of wonderful live music (violin, including the very moving title track to Schindler’s List). Again, this film was much more about the good achieved by one person rather than a documentary about the holocaust. The Polish violinist Bronislow Hubermann rescued many of the world’s greatest musicians from Nazi Germany and eastern europe in the mid 1930s, facilitating their exit to Palestine, which led to the creation of the now world-famous Israel Philharmonic Orchestra.

Two things struck me while watching both films: the extraordinary goodness and kindness that exists in humanity and which can sometimes be easy to forget, and the power of music to enrich and to transform both the lives of individuals and of nations.

CQ

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Categories Ageing, Film, Kindness, Music, Stories, War
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