This is a guest post by Rebecca Marshall. Rebecca has just graduated from UCL Medical School, having intercalated in Global Health. She is currently undertaking an MSc in Medical Anthropology, also at UCL. Her main interests include the intersections between medical anthropology, global health and bioethics, particularly in the insight Applied Medical Anthropology can offer to help tackle complex problems such as epidemics and bioethical dilemmas. She is a keen advocate for the use of art and literature in medical education.

“Slowly, day by day, they’re forgetting themselves. Forgetting where they are. Who they are. Are you forgetting your own history?”

The Ferryman, ‘the play of the year’, is a poignant snapshot into the helical tangle of ancestry, history and identity.

Transported from the darkness of the Gielgud Theatre to County Armagh, Ireland, 1981; Quinn Carney listens as his former IRA comrade recounts the gruesome fate of his brother. With the price of betrayal firmly cemented as a warning, a backdrop of brutality and revenge is set. Later, as the fierce Aunt Pat delivers the line above, she hauntingly reminds us of the inescapable nature of the past. A past ridden with violence, political upheaval and IRA activism. The dining table is laid out for a feast, the family prepare to bring in the harvest and the scene is set. All the elements of an inevitable Greek tragedy take shape.

Yet what particularly struck me as I watched the multiple narratives of the Carney household unfold? The vibrancy. The laughter. The chaotic comings and goings of harvest season, the grotesque sense of humour and the illuminated faces of the children as they listen, in raptures, to the stories of their elders.

Incongruous with the backdrop perhaps?

This incongruity, whilst puzzling, echoed a recurring theme I witnessed as a medical student. The co-existence of humour and tragedy, cure and poison (Pharmakon itself meaning both benefit and harm in Greek [1)], control and powerlessness – opposite forces at play. And all coming to the fore in the clinical context.

I’d imagine, (because of his warm Irish accent, his tumultuous journey through a diagnosis of colorectal cancer and the rare insight I was allowed into his home life), that Aunt Pat’s line and this theme of incongruity resonates with a particularly memorable case. The patient case of Mr. O. Students are set the daunting task of shadowing a patient for our ‘Cancer Patient Pathway Project’ (2).  And as I observed the course of Mr O’s clinical journey, I witnessed his tangled threads of ancestry, history and identity unfold…..

There was no jovial smile to greet me in the waiting room on our second meeting. As I headed to the Nurse’s office to see if I’d mixed up my timings, a kind Colorectal Oncology Nurse Specialist (over the years I developed an enormous amount of admiration for the CNS role) took me aside. The clue is always that look of concern. That small pat on the shoulder. Her words seemed to jumble, suspended in the air, and fall around me.

Neutropenic Sepsis. A&E Royal Free. Up on ITU, 4th Floor. Stable.

Anyone who has walked into an ITU ward can tell you that one experiences this strange mixture of feelings. Although a ward for critically ill patients and often a terrifying place, there is a palpable and surreal sense of calm. Walking around to Mr. O’s side room (large glass walls allowing a glimpse through) I could see him hooked up to various machines with leads splaying out every which way.

As I washed my hands and donned an apron in the clinical prep room, I tried to think of how I would greet him and his wife. What was the ‘right’ thing to say? What comfort could I offer? They say you’ll be thrown out of your comfort zone as a medical student. But I hadn’t ever imagined this.

Stepping in, I simply asked how he was feeling. His wife recounted her version of events. His weakened immune function. Appalling diarrhoea. Collapse. An ambulance called and an ordeal in A&E. The Catch 22: the 5-FU chemotherapy, a central agent used in colorectal cancer, was also attacking his immune system. Pharmakon. Remedy, poison?

As I checked the large chart at the end of his bed (vital signs and dosages charted meticulously; obsessively) another strange juxtaposition struck me. Such utter control on the ITU ward charts, all physiological parameters kept in strict limits. And yet a complete sense of powerlessness from the patient’s point of view. Control, Powerlessness.

And as I offered to fetch Mr. O a cup of water, he simply replied (pointing to his IV drip), ‘Any chance that we could run some Guinness through this?’ The glimmer in his eyes still intact. This perhaps the starkest incongruity of all: humour, suffering.

As the next weeks progressed and Mr. O made a good recovery, a piece of the puzzle came to light. Sent for genetic testing, it turned out that Mr. O carried the DYPD*2A mutation. This mutation leads to a deficiency of DPD, the enzyme that normally breaks down the 5-FU chemotherapy agent (3). As this is such a rare mutation, it is not routinely screened for (4). This was a diagnosis of hindsight. Yet, what did this mean for Mr. O?

Mr.O and I discussed the fallout from his genetic testing and much of what he had to say troubled me. He was trying to comprehend how this treatment was given to him when it caused so much harm. He was struggling with feelings of personal responsibility and loss of hope; that his mutation, his gene, had rejected the first line treatment. That his mutation, his gene had changed the possibilities for treatment and for his future prognosis. And what struck me most, as his wife movingly spoke to me in ITU: ‘He looks so frail…I know that if he lost his sense of humour, we’d have lost him’. That the effects of this mutation (this entity that had accumulated errors, yet stayed silent for most of his life) – was challenging his sense of humour, his very core, his personal identity.

The inescapable nature of the past. A helical tangle. Ancestry, history and identity.

In the field of medical anthropology, the discourse of ‘geneticization’ (5) has been described. This explores the many ways in which clinical genomics is changing the landscape of the body, so that heath and disease become framed in an ‘essentialist, biologically determinist way’ (5). The genetic mutation is now an entity to be identified and visualised. Something to be known. Yet through ethnographic study recounting the ‘on the ground’ patient experience, anthropologists have found the gene to take on a cultural meaning quite distinct from its biological definition (6). (Regarding culture, it is useful to think of the anthropological definition from Keesing & Stathern: ‘systems of shared ideas, concepts and meanings that underlie and are expressed in the way that human beings live’ [7].)

So DYPD*2A carries a meaning beyond the biological. Failure. Uncertainty. Despair. Changes in social interactions between doctor and patient, wife and husband. Changes in perceptions of the self. And as we can see from Mr.O’s case, this becomes tangled up in how patients and families grapple with their diagnosis, with personal identity, and how the dynamics of agency, risk and responsibility unfold in the clinical context (8). Yet from memory, none of these issues were ever discussed in our Oncology tutorials or as part of our medical syllabus. From my limited exposure in the clinical setting, this facet of the patient experience went unspoken.

And thus Aunt Pat’s line echoes back to me: “Slowly, day by day, they’re forgetting themselves. Forgetting where they are. Who they are. Are you forgetting your own history?”

As the momentum of genomics in clinical medicine accelerates, is clinical medicine too forgetting? Forgetting that incongruities don’t just play out on West End stages, they shape the stuff of medicine; indeed, shape the human condition. However ground-breaking the implications of clinical genomics (and this article is in no way meant to refute just how transformative this field is); a gene is not just a gene, a mutation not just a mutation. A genetic mutation carries a meaning beyond the biological – it takes on a form of its own, a cultural meaning of its own.

This helical tangle of genetic ancestry, patient history and identity has a profound impact on patients like Mr O. It affects how patients and carers perceive their diagnosis, their prognosis and ultimately; their sense of self.

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References

1. Derrida, J. (1981). ‘Plato’s Pharmacy’, trans. Barbara, Johnson. In Dissemination, 61–172. Chicago, IL: University of Chicago Press
2. Clinical case notes for Mr. O’s case taken from my original Cancer Patient Pathway Essay, ‘The Pharmacogenetics of 5-FU related toxicity – is there a clinical role for pre-treatment screening’, 15th March 2015, UCL Moodle Archive, accessed 20.10.2017.
3. Hertz, D. L. & McLeod, H. L. (2013) ‘Use of pharmacogenetics for predicting cancer prognosis and treatment exposure, response and toxicity’. J Hum Genet 2013; 58, 346–52.
4. Ciccolini J, Gross E, Dahana L, Lacarellea B, Merciera C. (2010) ‘Routine Dihydropyrimidine Dehydrogenase Testing for Anticipating 5-Fluorouracil–Related Severe Toxicities: Hype or Hope?’ Clinical Colorectal Cancer, 2010; Vol. 9 No. 4 , 224-228.
5. Lippman A (1992) ‘Led astray by genetic maps: the cartography of the Human Genome Project and health care’, Social Science and Medicine, Vol. 35 No. 12.
6. Nelkin D & Linden S (1995) The DNA Mystique: Genes as Cultural Icon. New York: WH Freeman and Company.
7. Keesing R & Stathern A (1997) Cultural Anthropology: A contemporary perspective. Wadsworth Publishing Co. Inc. 3rd edition.
8. Gibbon S (2009) ‘Genomics as public health? Community genetics and the challenge of personalised medicine in Cuba’, Anthropology & Medicine, Vol 16, No 2, 131-146.