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

Authors: Jonathon Tomlinson

Publication date:  02 Jun 2014


Many doctors who become patients have been shocked by their experiences from “the other side.” Jonathon Tomlinson looks at these writings and considers what can be learnt from them

For many years, doctors have written about their experiences as patients in the hope that others 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 concerned about the treatment they have received and the way they have treated patients in the past (box 1). They are keen to explain what it is like to be a patient, the particular problems that doctors have in coping with illness, and the health risks associated with their profession.[1] [2] [3]

Box 1: How we treat patients

Kay McKall, a general practitioner with bipolar disorder, wrote in The BMJ 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.”[22]

Kate Granger, 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.”[23]

For a long time, doctors as patients have been concerned about how poorly doctors give bad news. In 1952 Henry Sigerist 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.”[1]

Things were little better 30 years later, when Campbell Moreland,[24] a 28 year old doctor with testicular cancer, was told that his chest x ray, showing metastases, was normal. “My trust … was irreversibly damaged,” he said. In 2009, Kieran Sweeney found out he had lung cancer by reading his discharge summary at home. In an interview online, he is in tears as he describes his experience.[25] [26]

These continued efforts and the themes that consistently recur in these narratives suggest that educators are failing to honour their experiences and share their lessons. It is recommended 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.[4]

To examine this issue, I read books, professional and lay articles, and blogs written by doctor-patients and others who wrote about doctors’ experience of illness. I have summarised my findings in a blog,[5] given lectures on my findings to medical students and trainee general practitioners (GPs),[6] and have organised reflective discussion sessions on these issues. Four major themes arose—the need to be seen as a person; poor standards of care; loss of professional identity; and shame and stigma. Complaints that doctors fail to see the person in the patient go back many years (box 2). Following their experience as patients, many doctors realise that, despite the frequency of mistakes in healthcare, most mistakes are not noticed by patients (see box 3).

Box 2: Being treated as a person

Complaints that doctors fail to see the person in the patient go back decades and continue to the present day.[41] [42] The introduction to a book that was 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[sic] both body and soul.”[1] Concerns that the personal aspects of care are neglected have been a consistent feature of doctors’ reports.

One time medical student and now full time patient Anya De Longh[43] teaches medical students about patient experiences. She has described the contrast between being a medical student and being a patient in an outpatient clinic, saying, “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 would like more time to spend with their patients, but feel that the pressure of work and administrative burdens are barriers to this.[44]

Doctor-patients often wanted to stress that it ought not to be an excuse, as Kate Granger explained, saying, “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.[45] It is amazing what you learn about people if you just ask. In the past few months I have looked after a world record-breaking knitter, an Olympic cyclist, and a lady who had 11 children. 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.”

Medical students rarely ever fail to introduce themselves to patients, but when 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. Granger has started a campaign that has rapidly gained massive support from grassroots healthcare workers to NHS England called #hellomynameis to get healthcare professionals to start introducing themselves again.[46] [47]

Box 3: Mistakes and magic

Most mistakes in healthcare are not noticed by patients. When interviewed about his book about doctor-patients, Albert Klitzman said that they “also became more aware of how many mistakes are made, like the wrong dose of medication. They were astonished by that.”[48]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 Granger,[23] emphasised their distress when waiting for results, saying, “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.” Klitzman noted that doctors with HIV got results back to their patients “with added urgency.”[3]

Doctor-patients also became more aware of the limits of care, and those interviewed about end of life care chose less intervention than they recommended for their patients.[49]Doctors with serious illnesses, even Anna Donald,[50] an academic in the field of evidence based medicine, chose to use massage, meditation, and alternative diets. Klitzman was surprised by the “degree to which ‘magic’ and irrationality persisted in the lives of these scientifically trained doctors.”[3]

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

One strength of doctors’ narratives is that they usually state, and almost always imply, what readers are expected to learn, for example that doctors should introduce themselves, listen to their patients, respect privacy, and remember that their patients are afraid or lonely. Other, more complex medical narratives require quite demanding skills of literary interpretation and criticism, which students and teachers may not have.[7] [8] [9]

Professional identity is particularly strong in doctors and medical students,[10] 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] For example, when sick doctors complain that their own doctor did not take time to talk to them, they do so with the knowledge that the doctor may be tired and busy and have other sick patients to treat. 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.[12] [13] [14][15]

Using either doctors’ or patients’ narratives can pre-empt critical reading or alternative interpretations because it is hard to criticise accounts written by someone who is seriously suffering.[16] [17] This is made additionally difficult if the author is an experienced doctor,[18][19] when students and trainees may consider themselves to be relatively lacking in experience and expertise.

The experiences of doctors clearly may not be typical of patients who are often poor, very young or old, illiterate, or immigrants. There are also risks that medical students and trainees 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.[20] [21]

Loss of identity

It is generally acknowledged that doctors make bad patients. Our professional identity enforces, or reinforces, the divide between us, the healthy doctors, and them, our sick patients.

Albert Klitzman has written about doctor-patients,[3] and has noted that, “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.”

Psychiatrist Rebecca Lawrence has described her experience of psychotic depression.[27] “I thought my training as a psychiatrist would help, but it was quite the opposite,” she wrote. “The experience forced me to cross the border from provider to patient, and taught me how much I did not know. When I read a textbook description of psychotic depression, my diagnosis, I can’t marry it with how I feel. I do feel low, but also agitated and frightened, and simply very ill. I have always felt like two people—the psychiatrist and the psychiatric patient—and it is very difficult when they overlap.”

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 doctors’ perceived attitudes to illness. In a qualitative study of GP attitudes to their own health,[29]one doctor is quoted as saying, “We think we’re superhuman and that we don’t get ill, or if we do, we can cope with it.”

The same study summed up GP attitudes by means of an “informal shadow contract,”[29]which included working through illness, ignoring symptoms of distress, and expecting colleagues to do the same.

Doctors’ belief that they can cope better than their patients is sometimes expressed as a refusal to “give in” to illness. Not giving in is an important part of the way doctors think about and judge themselves and their colleagues and, possibly others who are sick. Susan Sontag, a writer and philosopher who had breast cancer, was particularly perceptive about difficulties accepting illness.[30] “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,” she wrote.

Shame and stigma

The divide separating doctors and patients is nowhere stronger than in mental health, and many doctor-patient narratives are about mental illnesses.[22] [31] [32] [33] Doctors have the same rates of depression, schizophrenia, and bipolar disorder as their patients, but they are much more likely to commit suicide—female doctors are two and a half times more likely to kill themselves than their non-medical counterparts.[33] The Australian Beyond Blue study in 2013 showed that one in five medical students and one in 10 doctors had had suicidal thoughts in the past year, compared with one in 45 people in the wider community.[34]

One description by a psychiatrist with bipolar disorder was typical of many doctor-patients.[32] “I had become a psychiatric patient and am embarrassed to say the stigma made me feel physically sick,” the psychiatrist wrote. “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 apply not only to mental illnesses but also to a wide range of illnesses, especially when they stop doctors working.[35] [36] [37] Feelings are imposed internally and externally, as discovered by a GP recovering from breast cancer.[38] “The shocking hostility that some healthcare professionals display towards vulnerable colleagues did not manifest itself until I went back to work.”

Anya de Longh,[39] who was forced to give up her medical studies because of a rare and severe neurological disease, wrote in her blog about her shame when she realised that some of her symptoms might be psychosomatic. She said, “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 stigmatised and so they tend to suffer in silence and carry on in a profession that prides itself on stoicism and bravado.[40] Sometimes it is a more-straightforward denial that stops doctors seeking care, as explained by Kay McKall,[22]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.”

Teaching and learning

Doctors who have been patients often feel compelled to report back, and what they have been telling us has been remarkably consistent over the years. These powerful accounts include lessons that can help us better understand what patients go through and the difficulties doctors have in coming to terms with their own health problems. But little has been made of this in medical education.

I have presented my findings on three occasions to second, fourth, and final year medical students and GP trainees in the form of a short lecture with quotations from doctor-patients, followed by small group discussions. On each occasion there were some trainees for whom the presentation had particular resonance. For some it was supportive and for others upsetting. I was grateful for the support of the student welfare service at Guy’s and St Thomas’ and the Tower Hamlets vocational training scheme course organisers for their expert facilitation of the small groups.

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. In addition, it can be an important component of pastoral care, helping students and doctors to learn about how to care for each other and tackle shame and stigma in the profession.

GP Liam Farrell, who wrote about his experience of, and recovery from, opiate addiction made this point powerfully.[51] “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.”

Competing interests: None declared.

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Link to original article – http://careers.bmj.com/careers/advice/view-article.html?id=20017843