This is an edited version of a talk I gave to medical students yesterday at Bristol University.
Churchill once said ‘The farther backward you can look, the farther forward you can see”.
The opportunity to talk here has been welcome on so many different levels. It has totally encouraged me to indulge in a very nostalgic meandering through my life, a reflective wondering on how and why I have ended where I am, and specifically here today, talking about it all. I have been considering that 16-year old girl as she left school so many years ago, and headed towards her university life in medicine, and have been wondering what she would make of me, and of my life now.
And so this talk is really a hugely narcissistic self-indulgent exercise in me looking at me…
My decision to do medicine was no accident. The youngest of five, I came from a very medical family. I was thought to be clever, top grades, though equally drawn to English and languages as to the sciences. I wanted to be a concert pianist, but I wasn’t good enough. I wanted to be a poet, but no one encouraged me. I tried to persuade my parents to allow me to do journalism. At 16, and a relatively timid convent girl, I lost that battle. And so my life in medicine commenced.
It didn’t suit me from the outset. The training was narrow, limited, and largely shallow. One of my piano teachers remarked that he had known many medical students who were great musicians, but most of them had quit music by the end of their training. That resonated with me. Of course that was decades ago, and training has changed so much over that time, hugely and hopefully in a way that fosters creativity and being true to self. I do so believe that such an approach nurtures people who are doctors because they are themselves.
I got through medical school, without any accolades, pretty much scraping through. I was uninspired by all of my undergraduate medical life. But I had no other (perceived) skills, and so continued on the medical trajectory. I chose internal medicine as my field. I did various medical jobs, attained the MRCP in the UK, and ended up working in the The Royal Marsden Hospital, London. An insanely busy job, it was here that I came across Palliative Medicine. Then very much in its infancy – initially called Terminal Care – I was immediately drawn to the specialty. Having seen many patients go through endless rounds of chemotherapy, even those who appeared to be imminently dying, Palliative Care seemed to connect with patients as individuals in a way that I had not really seen up to then. This realisation – that Palliative Care could uniquely address individual needs, something that medicine in general had hitherto not succeeded in doing – reminded me of one of my first clinical encounters some years previously, during my house jobs in Ireland. My very first house job, in Chest Medicine.
A German man, in his early fifties, on holidays with his wife, and with a known diagnosis of lung cancer (although given the ‘all clear’ just before going on holiday), presented with a history of increasing shortness of breath. Widespread disease was soon confirmed. The man was dying, away from his native country, and he did not speak English. A number of issues struck me from this tragic scenario, but perhaps most memorably his silence. As I daily checked his blood gases (a futilely invasive procedure in this context), I was profoundly struck by my impotence, my absolute inability to ‘hear’ and to bear witness to his suffering. The silence seemed beyond my inability to speak German, and he to speak English, but rather the silence ‘spoke’, even screamed, of the ineffability of his experience of suffering.
In many ways it was no surprise that I ended up in Palliative Medicine, for me the most creative and individual of clinical medical specialties. It was then in its infancy – I was fortunate enough to work with Dame Cicely Saunders at St Christopher’s Hospice. But while the Hospice movement took off at speed, introducing the concepts of Palliative Care to other doctors was challenging. My training years were mostly spent in teaching hospitals, where acceptance of death and dying was an anathema to the very essence of doctoring. Thankfully, this ethos has changed and continues to change.
Another obstacle at the time was the lack of an evidence base for the medical aspects – symptom control – of Palliative Care. This tapped into my scientific brain. And so I embarked on a mission to forge a medical credibility for what we were doing within Palliative Care. I was one of the first trainees to do an MD – 3 years of research into the clinical pharmacology of opioids. I left Palliative Care to do this, moving sideways into Oncology. A useful and humbling step, as it afforded me an insight into how other specialties viewed Palliative Care.
From then on, pain management became my primary research focus. At this point I was a Consultant and Senior Lecturer in Palliative Medicine, working within a multidisciplinary team in a large teaching hospital as well as having sessions in a nearby hospice. I also became deputy editor of the Cochrane Pain, Palliative and Supportive Care Group, where we organized systematic reviews of the evidence (or not) underpinning what was happening clinically. I was passionate about evidence based care. As such, I spearheaded the medicalization of Palliative Care, seeing it as a necessary step towards establishing a credibility for the specialty. I believed that Palliative Care could only succeed if we managed to convince our non specialty colleagues of its value. I also believed that by achieving this we would eventually do ourselves within Palliative Care out of a job. Naïve opinions on both counts.
And so it continued for a few years.
Until a few things happened. A change in my personal life encouraged me to rethink my life as a whole. I started an MA in Creative Writing at Sussex University, and thus began writing poetry again. This unlocked something within me and I started to see the world differently. Some of the poetry evolved from my own experience as a patient. When pregnant with my daughter I had a vascular episode, which mostly resolved apart from hearing loss. I began to try and make sense of that experience through poetry. Various doctors at the time spoke of how ‘I’ had lost my hearing, as if I had been somehow culpable, or careless. Current language of illness often appears to place the victim in a position of blame – ‘she lost her battle with cancer’ – as if fault lies with the sufferer, who perhaps did not even try hard enough to ‘fight’ the illness. You notice language acutely when you are on the other side. Susan Sontag’s words came to mind during my own experience: Sontag described the world as sharply divided into two kingdoms, that of the sick and of the well. I had been catapulted into the other kingdom. It was a distressing place to be, and this was not solely because of the condition itself.
At the same time, and interconnected for sure, I started to see Palliative Care specifically, and clinical medicine in general, in a different light. And it bothered me. I became acutely aware of the gap between the patient and the doctor, a gap heightened by language, where one story, the medical one, trumped all others and silenced voices that it failed – or did not try – to understand.
I had many epiphanies which led to my leaving clinical medicine. As the hospital palliative care team we had been seeing a man with pancreatic cancer for pain control. Despite trials of various opioid and non opioid analgesics, his pain continued. I suggested that we as a team were missing something here. This was a middle aged man, recently diagnosed with advanced and incurable cancer, who had a prognosis of less than 3 months. Can the experience of pain be a truly uni-dimensional one in such circumstances? Can analgesics alone alleviate physical pain in the context of dying? One of the junior doctors at the time was angry with me for not appearing to believe the patient’s reports of persistent and unremitting pain. I absolutely believed him. But psychological pain, for want of a better term, is to me as valid and real and authentic as so-called physical pain. This clinical encounter made me wonder where Palliative Care as a specialty was heading, largely spearheaded by people such as myself who were instrumental in its medicalization in the name of credibility.
A further clinical encounter: a woman with advanced cancer, who I was seeing daily, saw me approach the ward one morning. She immediately started to scream ‘save me from the black hole’. Distraught and terrified by a nightmare she had had, I did not know how to respond to this story, this living nightmare that she continued to experience in her waking hours. Yes I listened, but in my medical model, her words were outside and beyond anything I could, or perhaps even wanted to engage fully with. Susan Sontag’s words and kingdoms come to mind again. At times, particularly in serious illness, the gap between the kingdom of the sick and the kingdom of the well can seem vast (even though in reality the dividing line is very thin) and now as I think of it, an awareness of this must surely have heightened her distress, as I stood impotent and silent on the other side.
My leaving clinical medicine was the result of these stories, and many others, both at the bedside and beyond. I left to search for another language, a non-medical one that might have the potential to embrace and express the experience of illness, and of suffering.
And to some extent I found it, though the search continues, within my other passions, literature and the arts.
As is my nature, there were no half measures when I decided to leave clinical medicine. It was all or nothing. I never considered working part time. By then, I have been working full time for 20 years, apart from four months’ maternity leave. Colleagues were both shocked and baffled by my decision. My family – a predominantly medical one – found the decision unsettling, disquieting and difficult to understand, particularly my brother, a Professor of Medicine and a medical workaholic, who believes that medicine is not a job, but a vocation. My views on this would necessitate another platform, and another time.
And so I started my exploration of the language of illness. I wanted, and needed, to better understand what the experience of illness, of suffering, of dying really was, without the metaphorical white coat.
I went to Kings College London to do a fulltime MA in Literature and Medicine. I can honestly say that this was the best year. Ever. To be so totally immersed in a world of literature, reading, discussing, arguing, and writing was a joy. The literature was explored in the light, and darkness, of the world of medicine. We were a relatively small group, mostly comprising English graduates and doctors. Somehow, this masters magically brought both my passions – medicine and literature – together in a way I had never before experienced. It was a blissful year of self-indulgence.
All at a cost, at least financially. To fund myself, I sold my flat, downsizing, and lived relatively meagerly for a year. Which was a valuable and humbling experience. One that I am so glad to have had. I did some freelance medical and scientific editing, which was very time consuming and did not pay a lot. But it helped.
Following my stint as a mature student, I needed, and wanted a job. I also knew that I did not want to go back to clinical medicine. I felt that the time away had benefitted me. I felt different. I lived differently. I was back playing the piano, had taken up the cello. I was writing my own blogs. Yoga became an integral part of my life. I had space to reconnect with my self, the one that I seemed to have left behind during medical school.
I saw a job advertised in the BMJ – medical writer at Medikidz, a company that creates comic books for children on health and illness. I am still there today, more than four years later, now as Managing Editor.
In some ways, this job is not that far removed from my experience working in clinical medicine:
Firstly, it taps into my involvement with evidence based care. Accurate medical information is critical to our ethos and credibility.
Secondly, it may just be me, but I think that doctors almost universally operate from a strong ethical stance. In the clinical arena, this puts the patient first. Within Medikidz, for me, this puts children first. Which can be a challenge. Sometimes people forget that we are creating content, not for parents, HCPs, clients, but explicitly for children. So every word, every image must be meaningful for them. The rest is noise. This is a battle that I fight every day, and one that I do not always win in a highly competitive business world. I am actually rubbish at business, but perhaps this is a perverse advantage in my current working world. My moral high tone may annoy some, but it also reassures most that someone is constantly checking that what we done allies with our mission statement, which has children, not adults, at its core.
Thirdly, working at Medikidz has re-ignited my love of medicine. I have to be up to speed with the latest guidelines on so many conditions that I have learnt so much medicine over the past years. And medicine is endlessly fascinating. It would be hard to find a richer subject that is constantly evolving, challenging and surprising.
A couple of years ago the BMJ Doc2Doc blog invited me to contribute a post. Re-reading it over the weekend, I am a little embarrassed to admit that I called the piece ‘From Dr to Ms’… In it I speak about my ‘walking away from medicine’, a phrase used by others not by me, very much concluding that I had no regrets about leaving. That still holds true. A year ago, I briefly toyed with the idea of returning to clinical medicine, but decided against it. I think I would be a better doctor now, but this is not a hypothesis that I am going to test. I worked clinically for over 20 years. It was enough, and I am very glad that I had that time, but also glad that I did walk away from the metaphorical bedside to explore other aspects of medicine, and of me.
And I continue to explore. Not only at Medikidz, but also within the Medical Humanities. I am an editor at the BMJ journal Medical Humanities, where I commission book reviews, and curate the blog, which hosts an eclectic mix of posts, focusing on the arts and how it might, or might not, interact with medicine and the experience of illness. I guess to some extent through this work, I see my role within the humanities as bringing the bedside to the humanities, something that I want to do for all those patients whose lives I have touched on. I carry their stories with me and I hope that I can do something to facilitate the hearing of their voices and others. This past weekend I attended a Pain Conference in London, a truly multidisciplinary event. I chaired a session that included talks by a poet and a playwright alongside an academic reporting on non verbal communication of pain in those with dementia. Such events fill me with hope.
The Pulitzer Prize winning writer Anna Quindlen addressed the American Academy of Family Physicians, urging them to them to make a connection with patients as people, as individuals. ‘Do you know who I am?’ she herself had asked during an unfortunate consultation, meaning not Anna Quindlen the writer, or the condition, but Anna Quindlen the individual.
This is a very important message that I hope all doctors heed. Too often people are seen as their condition, but there has been a chapter before and there will be another chapter after the clinical consultation in the life of each and every patient. Lives that we as doctors too infrequently wonder and enquire about.
But I would like to throw something else out there – something for you all to think about as you embark on your exciting medical lives ahead. Make time to stop and consider a different but inextricably connected question – Do you know who you are?
Thinking back to my 16-year old self as she headed to medical school, to my 21-year old self as she started her house jobs and encountered that dying German man so early on in her medical career, I am grateful to her for making the choices that followed, and for refusing both to drift and to settle.
I am also grateful to medicine for facilitating my journey with her, and for helping me to get from there to here.