Archives for category: Medicine

Being able to ‘read’ and to understand the language of pain and suffering is for me an essential life goal.

Below is a link to a recently published personal reflection on how I started on this journey.

http://www.hektoeninternational.org/index.php?option=com_content&view=article&id=1746

CQ

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‘A true tale of love, death and DNA’

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I saw this affecting work last night at Jackson’s Lane Theatre, North London. The Penny Dreadful production is currently on a UK National tour. The play is a profoundly thought-provoking piece, which directly challenges us to consider issues around mortality, immortality, and the ultimate question of what happens to us when we die.

Do we cease to be at that point?

The Henrietta Lack story encourages a consideration of this question. Lacks died as a result of cervical cancer in 1951, at the age of 31. However, the cells from her aggressive cancer, known as HeLa and which contain all the DNA that constituted Lack’s genetic make-up, continue to survive and to replicate in laboratory conditions, producing the first ever ‘immortal cell line’. Despite the dubious ethical issues that surround the original procurement of Lack’s cells (her children were never told, and Lack’s cells were public property until 2013), research based on HeLa has been directly responsible for the development of treatments for conditions such as AIDs, cancer, cystic fibrosis and vaccines, and many more. HeLa cells have also provided the foundation for mapping the human genome.

How To Be Immortal interweaves three true stories: Henrietta Lack’s own story and that of Dr Gey and his wife who ‘discovered’ HeLa in 1951, the story that Lack’s daughter Deborah (1996) was born into (she was a baby when her mother died) but only discovered later in life, and the contemporary narrative of Rosa and Mick. Mick, similar Lack, also has a rare and aggressive type of cancer, from which he dies. The issue of research, using cells from his tumour – this time with consent – is presented to the distraught Rosa. She agrees, and the outcome leads to a healing of sorts. Deborah also seems to experience a coming-to-terms with her mother’s death, and with its aftermath

I applaud the blend of science and of the essence of humanness, particularly its essential vulnerability, that How To Be Immortal successfully balances to create a living performance that raises questions it does not necessarily set out to answer. It is our job, the audience, to consider what has been presented to us:

Who and what are we, and does our ‘make-up’ extend beyond our DNA?

When we die, what do we leave behind? A contribution to some genetic pool, or memories, that may only remain until the death of the last remembering person?

Unanswerable questions, perhaps, but worthy of reflection…

…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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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

I am so looking forward to this upcoming conference in Cheltenham November 23-24 (http://www.medicineunboxed.com/2013-voice/).
Themed ‘Voice’, the conference promises to encompass ‘a mosaic of the subjective, individually complex and disparate voices that resonate within medicine’. Speakers include the writer Lionel Shriver, the psychologist Richard Bentall, the composer Eduardo Mirando who works at the crossroads between medicine and science, the poet and philosopher Raymond Tallis, poets Jo Shapcott, Andrew Motion and Jackie Kay, the artist Bobby Baker… to name but a few in a very intriguing, diverse, eclectic and fascinating programme.

It promises to be great…

CQ

I have come across two events over the past week where links between poetry and science or medicine have been initiated.
Firstly, appropriately at Keats House, I attended the launch of a collaborative project between poets and scientists (http://www.poetry.gb.com/BiomedicalScience). Eleven poets teamed with 11 scientists to create poetry that reflected on the life/work of the latter. At the event, both the poet and the scientist of each ‘team’ spoke about their respective experiences throughout the collaboration. The resulting poetry is wonderfully rich and evocative. It was also very moving to hear the scientists speak, and so poetically, of what the experience meant to them.

Secondly, today I came across a piece in a recent New Yorker (http://www.newyorker.com/talk/2013/10/14/131014ta_talk_singer) on poetry and medicine. John F. Martin is a ‘cardiologist, transatlantic academic, specialist in gene therapies for treating heart attacks, clinician, and published poet.’ I guess the ‘poet’ element is last mentioned in order to heighten the impact of this apparent incongruity. There have indeed been clinicians, such as William Carlos Williams and Dannie Abse, who were also published poets. But they are in the minority. I have not yet come across Martin’s poetry, but I will now seek it out.
Apart from his own poetry, Martin has also initiated an annual poetry competition for medical students both at UCL and at Yale School of Medicine. This project arose out of his concerns that ‘medical students are at risk of becoming “intellectually brutalized”…conditioned to focus upon the microscopic at the expense of the holistic.’
The competition is now in its third year, and I have been reading the work of past winners. Impressive. My favourite is Encounters with Death, by Kevin Woo (Yale University, 2012):

‘In the First Year
I gazed upon a body overtaken by Death
The fingers, withered and cold
Eyes as gray as the stainless steel casket
Call her Cadaver, they explained, and learn
Her lines, her edges…
…And in the First Year, I dissected Death.’

There is a separate stanza for each year, of four.

‘In the Second Year
I memorized the signs of Death
A lung, scarred and emptied
The nodes of Osler revealing infection within…
…And in the Second Year, I pathologized Death.’

‘In the Third Year
I saved a man from Death
His heart, so worn and weary
That it had surrendered its rhythm…
…And in the Third Year, I conquered Death.’

‘In the Fourth Year
I had a conversation with Death
Of what do you remain afraid, Death asked
That you might know Death only by dissection, as pathology, to be conquered?
And I learned that Death
Was a companion along the journey of humanity
Along which we travel
I smiled, because I understood
At last
And in Fourth Year, I accepted Death.’

A most impressive journey in just 4 years. For most of us it takes a lifetime, if we do even manage to arrive.

CQ

I first came across the writer and medic Gabriel Weston when I read her debut book and memoir Direct Red (2009), which won the PEN/Ackerly Prize for Autobiography. I liked it. Weston’s personal account of the challenges of balancing clinical committment in a morally ambiguous (male) world resonated strongly for me.

Weston’s current book is also her first work of fiction. However, with the scenario remaining firmly within the world of medicine, the workings of a medical mind behind the pen of Dirty Work were apparent throughout. Clinical moral dilemmas remain pervasive in the novel, specifically in this case that of doctors performing abortions.

I enjoyed the experience of reading Dirty Work, particularly when Weston’s medical background facilitates thought-provoking reflections:

‘A good doctor needs to know how to spin a yarn. That’s what they teach you at medical school, though no one ever says it in so many words… They call it history-taking, this supposedly neutral process in which a patient and doctor collaborate to weave a shape out of what’s gone wrong. They make it sound straightforward.’

Weston continues to consider how, as doctors ‘take the history’, they encourage patients to dwell specifically and exclusively on symptoms, ‘ignoring the white noise of emotion’.

‘The doctor is rewriting the patient’s story while seeming only to bear witness to it.’

A mistake, a clinical error, results in suspension for the female medical protagonist, who is subsequently investigated by the hospital Fitness-To-Practise committee. The novel follows her throughout the three week questioning period, and witnesses her change of attitude towards medicine in general, as well as the part she herself plays within the field.

She learns much about herself throughout this process, and concludes:

‘I have done much worse than not articulating the particularities of my own experience. I have been deaf to those of my patients.’

‘What a doctor needs…is a quiet appetite for truth.’

I enjoyed the experience of reading this book (an experience that reminded me of Louise Doughty’s Apple Tree Yard, perhaps the not dissimilar themes of female protagonist, career woman, moral dilemma, ‘perfect’ life going astray…).

The plot went a little off track for me towards the end. The ending itself left me dissatisfied, and brought to mind something I heard the film director Mike Figgis say recently. Figgis deliberately chooses open-endedness in his films, this sense of not being finished or closed allowing viewers to create their own conclusions. Whenever he reads a book, he stops 20 pages or so before the end, as most imposed closures ultimately disappoint. I can relate to this. The ending in Dirty Work was not a ‘bad’ one. It just left me a little disappointed, and flat.

It will be interesting to see where Weston’s writing heads from here. To date, her medical background informs the content of her books. Whether she will stick to this theme or whether she will explore other literary terrains, remains to be seen.

CQ

I saw this tonight, and really enjoyed it. Even though the subject matter – illness, death, difficult relationships, loss – may appear ‘heavy’, I am glad I experienced it.

Melanie Spencer’s play is not perfect – it felt slightly too long and would have benefitted from deleting some scenes – but it effectively deals with very tricky life events imaginatively, sensitively, and with an appropriate, and important, dose of humour.

Daisy is almost 16. She is off school in her GCSE year, as she has recently been diagnosed with the autoimmune disease lupus (systemic lupus erythematosus). She lives with her dad, Peter. Her mum died from cancer just 18 months earlier.

Much of the play focuses on the relationship between Daisy and her dad, which is mostly fractious and involves much shouting (and non-listening) and storming out scenes. Peter still grieves for his wife. Daisy feels not understood by her dad.

Daisy’s best friend Alice loyally visits her pal regularly at home, updating her on school work and on school gossip. Theirs is an affecting and touching relationship, which holds much that feels real and raw, and full of teenage-appropriate angst.

As Daisy embarks on a course of low dose chemotherapy treatment, her dad calls on his wife’s sister Diana for help. Struggling to make ends meet, he cannot take the time off from work to accompany Daisy on her hospital visits. Diana, who appears to have had some mental health issues, is initially reluctant, but rises to the occasion, and ultimately thrives on this new challenge, and purpose, in her life.

There are many issues here, including serious illness, death of a parent/spouse, grieving, loss, mental illness, and not least, the challenges that teenagers face, which are so greatly enhanced by the arrival of serious illness.

I particularly loved the ending. It was open-ended enough to allow you to consider and to personally reflect on much of the stuff you had experienced, but also poignant and touching, and importantly spotlighted on teenagers, whose story it ultimately is…

CQ

Just been, and it was magic. Mega Magic.

The current performance, which includes just a short few days at The Tricycle, centres around the death of Hughes’s father (Sean Hughes senior) from cancer.

The show is a tribute to Hughes’s dad, and as such has many moving moments, but it is also an honest and brave depiction of their at times troubled relationship.

Hughes does not dwell on pathos, and while this is a script with death and dying as its focus, it is by no means leaden or depressing. On the contrary, it is hilarious, at times uproariously so, a fact that in no way diminishes (in fact it enhances) the very real and poignant central theme.

Hughes cleverly skips around – his childhood, moving back to Dublin in 1970 aged 5 with a cockney accent at the height of ‘The Trouble’, the Irish, Catholicism, drinking, his own health and relationships – but always within sight of his father, so that returning repeatedly to his hospital bed feels natural. The show is very much about the death of ‘someone you love’ (a phrase Hughes repeats several times, and also questions what it means in relation to our parents), and about what grief means and how we make sense of it, but within the context of both the lived life of the person who has died, and the lives of those left in death’s wake.

I loved the finale. I had wondered on what note it would conclude, and I think Hughes got it just right. It served to beautifully and movingly emphasise what the entire show had attempted to portray  –  that we can indeed talk about death and dying and loss and grief, that we can also laugh about it, and we can combine it all, publicly, to create something tangible and meaningful, while at the same time entertaining and real.

I felt uplifted as I walked home.

Genius. I was mesmerised, moved and seduced by Hughes’s mind and brilliance.

CQ

… which I highly recommend.

Released in 2012, I missed Barbara during the recent and short cinema run, and only just caught it some months after its London screening.

I know little about German cinema – Run Lola Run was probably my most recent experience – and it was the storyline that intrigued me most about Barbara. A couple of years ago I read, and was very much taken by, Anna Funder’s book Stasiland. The setting of Barbara in 1980’s East Germany fuelled my interest in the hidden world of that era. I first visited Germany, and Berlin, shortly after the wall came down. It felt then like I had only experienced a fragment of the aftermath, with no perspective on what had gone before.

Barbara, directed by Christian Petzhold, tells the story of a female doctor (played by Nina Hoss) in East Germany in 1980, who has been banished to a hospital in the provinces from Berlin as a result of her attempts to escape to the West. Barbara finds herself in a world where she does not know who she can trust, or love, including herself.

This is not a hugely action-packed film but a deeply compassionate and redemptive one. Watching it, for me, was a restorative experience.

CQ