Lessons from “the other side”: teaching and learning from doctors’ illness narratives

An abridged version was published on the British Medical Journal website here and the full version is below.

I have been using this to teach medical students, doctors and educators – for the last 3-4 years and am happy to bring it to your medical school, VTS scheme, etc. Contact jonathon.tomlinson at nhs.net

Contexts

 

Doctors have written about their experiences as patients for years in the hope that other doctors might learn something from what they have been through. They are motivated by the often-shocking realisation that medical education and clinical practice have prepared them so poorly. They are keen to explain what it is like to be a patient, the particular problems that doctors have coping with illness and the health risks associated with their profession^1-3. Their continued efforts and the consistent, recurring themes suggest that we as educators are failing to honor their experiences and share their lessons. It is recommended⁴ that medical students and trainees are taught about patient experiences and health problems among doctors and I propose that reflective engagement with the narratives of doctor-patients is an effective way of achieving these aims.

Methods

 

I read books, professional and lay articles, and blogs written by doctors who were patients and others who wrote about doctors’ experience of illness. I summarised my findings online in a blog⁵ and used quotes from doctor-patients to make up slides⁶ for a lecture, which I have given to medical students and postgraduate trainee GPs. I have run reflective, discussion sessions with each group after the lectures.

Observations

 

Four major themes arose from my reading: the loss of professional identity, shame and stigma, the need to be seen as a person and poor standards of care. There was little difference in the emphasis between recent and older narratives. In the reflective sessions, students shared their personal experiences of illness and were particularly interested in issues around being a doctor and a patient. Here I discuss the literature, the distinguishing features of the doctor as patient, my experience of teaching and suggestions for further use in medical education.

Why do we need doctors to tell us what it is like to be a patient?

One strength of doctors’ narratives is that what readers are expected to learn is usually stated and almost always implied, for example they should introduce themselves, listen to their patients, respect privacy, and remember their patients are afraid or lonely and so on. Other, more complex medical narratives require quite demanding skills of literary interpretation and criticism^7,8,9 that students and teachers may not have. Professional identity is particularly strong in doctors and medical students¹⁰, and perhaps more than their non-medical peers they assimilate this into their personal identity. Doctors’ illness narratives therefore have a particular power because of the inescapable sense that if it happened to ‘one of us, it could also happen to me’¹¹. Trainee doctors are sensitive to criticism like the rest of us and most doctors’ illness narratives show appreciation of this. For example, when a sick doctor complains that their doctor did not make time to talk to them, they do so with the knowledge and understanding that their doctor may be tired and busy and have other sick patients to see to. Patient narratives might be too easily dismissed if they fail or refuse to show sensitivity or understanding of the pressures that doctors are under.

Doctors, who know by virtue of personal experience what it is like to be a patient, also have a special role as ‘wounded educators’ able to teach from first-hand experience about being a doctor and a patient. In medicine and theology a ‘wounded healer’ is one who has healing powers by virtue of their experience of illness or suffering and in traditional cultures this was understood to be so important that training or initiation rites often involved deliberate injury or poisoning^12-15.

There are risks in using doctors’ narratives if patients’ narratives are excluded. Either type can pre-empt critical reading or alternative interpretations because it is hard to criticize a book written by someone who is seriously suffering^16,17, in part because expectations that medical students demonstrate empathy can lead them to take a non-judgemental position. This is made additionally difficult^18,19 when the author has the authority of a more experienced doctor because students may feel they lack both experience and expertise.

The experiences of doctors, who have the all the other advantages of socioeconomic status, clearly may not be typical of patients who are poor, very young or old, illiterate or immigrants, with the risk that these important perspectives are less understood. There are risks^20,21 that medical students may give greater credence to their professional elders as the source of medical education, even though patients are beginning to be seen as educators, rather than solely as educational material.

 

How we treat patients

 

Many doctors are driven to describe their experiences as patients because they are concerned about the way they were treated and the way they themselves treated patients before they became patients. Dr Kay McKall²², a GP who suffered with bipolar disorder wrote for the British Medical Journal in 2001,

“I’ve become sensitive to mistakes that other doctors make when managing me, and I have translated those mistakes into corrections in how I myself manage people with depression. The point of this article is to share these with you.”

Dr Kate Granger²³,a young doctor with metastatic sarcoma wrote her book, ‘The Other Side’ to help health professionals,

‘to be better able to understand exactly what being the patient is really like and how their behaviours, no matter how small can impact massively on the people they look after.’

For a long time, doctors as patients have been concerned by how poorly doctors give bad news. In 1952 Professor Henry Sigerist^{1 (page 8)} wrote,

“medical colleagues were incredibly secretive … I was never told results, only general answers, not the facts and figures I wanted to know. The result of this secrecy was that for a number of years I never again consulted a doctor.”

Things were little better thirty years later, when Campbell Moreland²⁴, a 28 year old doctor with testicular cancer was told that his chest X-ray, showing metastases, was normal,  “ My trust … was irreversibly damaged.” In 2009, Professior Keiran Sweeney²⁵, found out he had lung cancer by reading his discharge summary at home. He is in tears as he describes it in an interview online²⁶.

Loss of identity.

It is generally acknowledged that doctors make bad patients. One reason is our professional identity which, in contrast to traditional healers, (re)enforces the divide between us, the healthy doctors, and them, our sick patients. Writing about doctors who were patients, Klitzman^{3(location 151)} notes, in common with many others,

“Often, only the experience of becoming seriously ill finally compels them to change their thinking, and see themselves and their work more broadly, and from a different vantage point to realize how their prior professional view is just one of several possible perspectives.”

Rebecca Lawrence²⁷, a psychiatrist describing her experience of psychotic depression wrote,

When I was around five months pregnant, we moved back to Edinburgh and went to our GP, who immediately referred me to a psychiatrist, who sent me straight to the local hospital. I had last been there as a medical student, several of my friends and colleagues worked there, and my previous life as a doctor was instantly shattered. I had hoped to train as a psychiatrist myself, and I thought that possibility was now extinguished, that anyone who had been a psychiatric inpatient would never be accepted as a colleague.

Chronic illness is associated with loneliness and isolation^14,28 and doctors who are unable to work because of illness feel this acutely if they can no longer associate with their peers.

It is not only professional boundaries that separate doctors from patients but also our perceived attitudes to illness. In a qualitative study of GP attitudes to their own health²⁹, one doctor is quoted, “we think we’re superhuman and that we don’t get ill, or if we do, we can cope with it.” Doctors’ belief that they can cope better than their patients is sometimes expressed as a refusal to ‘give in’ to illness. The same study²⁹ summed up GP attitudes by means of an ‘informal shadow contract’ which included working through illness, ignoring symptoms of distress and expecting their colleagues to do the same.

Not ‘giving in’ is an important part of the way doctors think about and judge not only ourselves but also our colleagues and, one fears, others who are sick. Susan Sontag³⁰, a writer and philosopher who suffered from breast cancer was particularly perceptive about difficulties accepting illness,

‘[it is] not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation’.

Shame and Stigma

 

The divide and the associated fantasies are nowhere stronger than in mental health and many of the doctor-patient narratives and related articles I found^22,31-33 were about mental illnesses. Doctors have the same rates of depression, schizophrenia and bipolar disorder as their patients but are much more likely than their patients to commit suicide; female doctors are two and a half times more likely than their non-medical counterparts^33(p.2). The Australian Beyond Blue study³⁴ last year showed that one-in-five medical students and one-in-ten doctors had suicidal thoughts in the past year, compared with one in 45 people in the wider community. Only two weeks before I gave this lecture about doctor-patients to 4th year medical students at Guy’s and St Thomas’ hospital, one of their year had committed suicide.

The following description³² by a psychiatrist with bipolar disorder was typical of many doctor-patients,

“I had become a psychiatric patient and am embarrassed to say the stigma made me feel physically sick. I felt ashamed of being “weak” and hated the idea that personal information and “failings” were going to be kept on an NHS database. As a psychiatrist it is deplorable that I had such negative cognitions about mental illness. I can put some of it down to my depressed thinking at the time, but not all of it. Despite the Royal College of Psychiatrists anti-stigma campaign and some eminent psychiatrists and celebrities being candid about their illnesses- stigma is alive and well.”

Feelings of shame and stigma applies not only to mental illnesses but to a wide range of illnesses, especially when they stop the doctor working^35-37.  Feelings are imposed internally and externally, as discovered by a GP³⁸ recovering from breast cancer,

“the shocking hostility that some healthcare professionals display towards vulnerable colleagues did not manifest itself until I went back to work.”

Anya de Longh³⁹ was forced to give up her medical studies because of a rare and severe neurological disease. In her blog she wrote about her shame when she realized that some of her symptoms might be psychosomatic,

“I fear about being so open about the psychological aspects of my illness because the stigma I apply to myself is likely to be applied by others. Writing this and being so open about the conflicting emotions that it entails has made me question my own sanity on more than one occasion!”

Doctor-patients fear being judged and stigmatized⁴⁰ so tend to suffer in silence and carry on in a profession that prides itself on stoicism and bravado.

Sometimes it is a more-straightforward denial that stops us seeking care, as explained by Kay McKall²², a GP with bipolar-disorder,

“Don’t assume depressed doctors know that they’re sick. The view is quite different from this side of the sanity divide. Chances are that we think that we are only stressed by work, and are distressed by our perceived inability to cope.”

Shame nearly led to my death as a junior doctor, because I was ashamed at my inability to diagnose myself, and I feared humiliation more than death:

I had less than a month to go before the end of my second hospital job after qualification in 1996. I had been working as a surgical house officer for 5 months, and had taken off a weeks holiday to go walking in Scotland. I caught the train to Glasgow and the whole journey felt nauseous and feverish. When I arrived I met a friend and he could see I looked unwell. I joked that it was probably psychosomatic or Munchausen’s disease, because I imagined I might have appendicitis, one of the commonest conditions I dealt with as a junior surgeon. My stomach grumbled and I sweated uncomfortably for a few hours before catching the train on to Fort William. I prodded my stomach trying to elicit the clinical signs of appendicitis – rebound tenderness or guarding overMcBurney’s point – without success.

At Fort William I figured that if I really had appendicitis I would be in far more pain, so I changed my working diagnosis to gastroenteritis and set off up the glen of Nevis. I made slow progress due to hopeless map-reading skills as much as deteriorating health, but eventually found a bothy before nightfall. Unfortunately a group of school children occupied it and I had to pitch my tent outside. I spent the night pouring with sweat and shivering with fevers, whilst insects feasted on my naked torso that hung outside the tent because the heat I was generating inside was unbearable. The following morning I felt worse than ever and I decided that I must have appendicitis. I asked the teacher supervising the group if I could use his phone -in those days a mobile phone weighed as much as a brick, had a battery-life of minutes, and cost a small fortune to use. He told me that he could only use it for emergencies for his group. I was in no state to argue, but in part I didn’t want to push it because of the nagging doubt that I might be wrong about my diagnosis. There was a rainbow in the sky before I left, and in the visitors book I wrote, that if I should die, then I’d like my friends and family to know that one of the last things I saw was a a beautiful rainbow.

It took me all day to walk back to Fort William even without getting lost. The last couple of miles into town were along a road. I was so tired and sick I really didn’t think I could make it, so I lay down in the road hoping someone would stop and pick me up. One car drove past, the driver swearing at me to get out of the fucking road, so I got up and staggered all the way to Fort William Hospital. I walked up to the main doors and stopped. I prodded my stomach again … and again. What if it wasn’t appendicitis? I could imagine the surgeon inside examining me sceptically, asking me where I trained and worked, and then asking me to list the signs and symptoms if appendicitis. I began to panic, I had come all this way, but I couldn’t go in to the hospital. Instead I turned around and headed into town to find a phone-box so that I could call a friend. I burst into tears as soon as Becky answered the phone and I blubbed my story. “What on earth are you waiting for? Go back to the hospital, of course it’s ok!” The relief was enormous, I went straight back and into the hospital. The surgeon couldn’t have been kinder, though when he told me that he thought I had a retro-peritoneal abscess and the last time they tried to treat one surgically they had ended up removing half the patient’s colon and this left them with a colostomy (or at least that’s how I remember it) I burst into tears again. Luckily for me, after 10 days of intravenous antibiotics and fluids I recovered without surgery.

Medical education has traditionally involved large amounts of shame and humiliation, with public interrogations of students on ward rounds in front of patients and peers. The fear of being unable to answer is so overwhelming that I was more afraid of mistaking something benign, like gastroenteritis for something potentially life threatening, with apparently classic signs and symptoms, like appendicitis, that I couldn’t present myself to hospital.

Being treated as a person

 

Complaints that doctors fail to see the person in the patient go back to 1927⁴¹ and continue to the present day⁴². The introduction to a book^{1 (p.xiv)} published in 1952 containing short essays by doctors with conditions as varied as heart disease and tuberculosis concluded,

“The first need … is the recognition … that every disease is psychosomatic, that is, that it effects both body and soul.”

Concerns that the personal aspects of care are neglected have been a consistent feature of doctors’ reports ‘from the other side’. It is worth noting that most of the doctors who have written or been interviewed about their experiences as patients have suffered either mental illnesses or cancer and some of the best known accounts are from patients with terminal cancer. Fewer have had acute conditions or other chronic diseases suggesting that the unmet need to be treated ‘as a person’ may be have been a reason for writing about their experiences.

One time medical student and now full-time patient, Anya De Longh⁴³, who teaches medical students about patient experiences, described the contrast between being a medical student and a patient in an outpatient clinic,

“In my first rotation, orthopaedics and rheumatology, I lost track within the first week of how many outpatient appointments I sat in on. I didn’t really think anything of them – they are just another 15 minute slot of time filled with learning in a very busy day. As a patient, my perspective couldn’t be more different. I have one appointment with my consultant a year, and spend weeks planning and preparing, then a month recovering emotionally.”

Time spent with patients was considered very important to many doctor-patients. Many doctors themselves would like more time to spend with their patients, but feel that the pressure of their work and administrative burdens are barriers⁴⁴. Doctor-patients often wanted to stress that it ought not to be an excuse, as Kate Granger⁴⁵ explained,

“If being ill has taught me anything about being a doctor it is the importance of seeing a patient as a person and not merely a condition or disease sat in a hospital bed. It is amazing what you learn about people if you just ask. I have looked after a world record-breaking knitter, an Olympic cyclist and a lady who had eleven children in the last few months. The disease focused clinicians may see these facts as irrelevant, but I think they are central to understanding the person, how their pathology impacts on them and why they are special to their family.”

In my experience, medical students rarely ever fail to introduce themselves to patients, but once they become infected with the culture of working life, they (we) slip into bad habits. Doctors as patients were struck by the lack of common courtesy they experienced. Kate Granger has started a campaign^46,47 that has rapidly gained massive support from grassroots healthcare workers to NHS England called, #hellomynameis to get healthcare professionals to start introducing ourselves again.

Mistakes and magic.

 

Most mistakes in health care are not noticed by patients. When interviewed about his book about doctors who were patients, Albert Klitzman⁴⁸ said,

“[doctors as patients] also became more aware of how many mistakes are made, like the wrong dose of medication. They were astonished by that.”

My own experience as a patient and a relative of sick family members has made me acutely aware of how frequently mistakes are made. Other doctors including Kate Granger²³ emphasised their distress when waiting for results,

“I am frightened and it feels as though nobody is talking to me. I know my MRI report is available, but again no-one has taken the time to discuss this with me so I know this must be bad news. I am laid in a hospital bed sobbing and scared, about at the most vulnerable a patient could be.”

 

Klitzman³ noted that doctors with HIV got results back to their patients, ‘with added urgency’.

“Doctors as patients also became more aware of the limits of care. Doctors interviewed about end of life care⁴⁹ chose less intervention than patients and less than they recommended for their patients.Doctors with serious illnesses, even Anna Donald⁵⁰ an exceptional academic in the field of evidence-based medicine, chose to use massage, meditation and alternative diets.Klitzman^{3 (location 3581)} was surprised by the ‘degree to which “magic” and irrationality persisted in the lives of these scientifically trained doctors”.

Teaching and learning.

Doctors who have been patients and experienced ‘the other side’ often feel compelled to report back, and what they have been telling us has been remarkably consistent over the years. Their powerful accounts include lessons which can help us better understand what patients go through and the difficulties doctors have coming to terms with their own health problems. Little has been made of this in medical education and so I have presented my findings on three occasions to 2^nd, 4^th and final year medical students and GP VTS trainees in the form of a short lecture with quotations from doctor-patients, followed by small group discussions. In the groups the students choose themes they wish to discuss, such as professional identity, stigma, courtesy or medical errors. On each occasion there were some trainees for whom the presentation had particular resonance, and for some of those it was very supportive and for others quite upsetting. I was grateful for the support of the student welfare service at Guys and St Thomas’ and the Tower Hamlets VTS course organisers for their expert facilitation of the small groups.

 

Future prospects.

 

In addition to the subjects outlined about, this work can be used to help doctors develop the reflective skills and personal insight necessary for them to better understand their own predispositions to illness. It can also be an important component of pastoral care, helping students and doctors about how to care for each other and tackle shame and stigma in the profession.

GP Dr Liam Farrell, who wrote about his experience of, and recovery from opiate addiction makes this point very powerfully⁵¹,

“when you are faced so starkly with your own vulnerability, it does make you understand patients so much better … We are frail, we are human — bad things can happen to us, just like anybody else. I think we have to be aware of our own mortality and our own frailty as well, and not be ashamed to look for help if we need it, and also to watch out for each other – not in a ‘big brother’ kind of way — but I think we have to look out for each other’s health.”

This essay is dedicated to Kate Granger.

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http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=0

Doctors tweet their mental health stories http://ashleighwitt.blogspot.com.au/2015/11/doctors-mental-health-stories-in-140.html