It’s taken me over 20 years to appreciate just how little attention is paid in medical education to what it’s like to be a patient.
Often, only the experience of becoming seriously ill finally compels [doctors] 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. When Doctors Become Patients
I decided to write this blog after reading The Other Side, by Dr Kate Granger. Kate is a young doctor and a cancer patient dying from a rare and aggressive form of cancer. She wrote 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.’ Her book succeeds in doing this better than anything I have experienced in formal medical education. Doctors’ illness narratives have a particular power in part because there is the inescapable sense that if it happened to ‘one of us, it could also happen to me’. But there is more to it than that. It is easy, particularly for a student or a young doctor to treat one patient’s account of illness as a strictly personal tale, with little generalisability – interesting, but of little obvious educational value. On the other hand, when an experienced doctor, even a relatively young one, writes about their experience as a patient, with an explicitly educational purpose, we pay closer attention to what they have to say.
Kate’s book is one of a growing number of books, articles and blogs written by doctors about their experience of illness, many written with similar intentions, for example, a GP writing about bipolar disorder 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.
One of the first of these educational narratives was published in the Lancet in 1982 with a longer pamphlet version produced for use in medical education at Queen’s University Belfast. Dr Campbell Moreland was diagnosed with testicular cancer at the age of 28 and in common with many doctor-patients wanted to emphasise the importance of communication skills, especially in relation to end of life care, when treatment was no longer curative,
If a doctor’s satisfaction comes from the concept of disease/diagnosis/treatment/cure, then he or she is likely to be disappointed and may travel along the path of narrow-minded, self-centred glory. When this linear process breaks down, as in chronic relapsing illness or terminal illness, the doctor will fail to achieve job satisfaction by his own definition. The patient will expect the doctor to understand his or her situation, but since the doctor cannot, the patient will feel rejected.
He noticed this not only among the doctors who were treating him, but also among his colleagues,
As [the cancer] became more chronic, some lost interest, and … others who met me completely ignored the fact that I was ill despite my appearance … This may have been another manifestation of the denial mechanism- my colleagues denying that I was ill and protecting themselves from a reminder of their own vulnerability to disease. Doctors often forget that they are also human.
This blog accompanies a lecture that I have given to medical students at Guys and St Thomas’ and GP trainees from Tower Hamlets. I will be soon be presenting it to students at Bristol and Imperial Medical Schools. I would like to present it elsewhere and continue to develop it. From the narratives I have read there emerged four themes, which are presented as a discussion here and as quotations from doctor-patients in the slides. A great deal of what follows is also quoted from doctors who are, or were patients.
Loss of identity
Stigma, shame and loneliness
Being seen as a person
The poor standards of care -and medical scepticism
Loss of identity
Illness comes from the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick … although we prefer to use only the good passport, sooner or later each of us is obliged, a least for a spell, to identify ourselves as citizens of that other place. Susan Sontag, Illness as Metaphor.
Doctor-patients are reminiscent of our ancient forebears, Shaman and traditional healers. They were a special caste, uniquely able to access both human and spirit worlds and act as intermediaries between them. It took special powers bought about by careful selection, arduous training and demanding rituals, sometimes-involving hallucinogenic drugs to be able to do this.
The Wounded Healer in medicine and theology is one who has special healing powers by virtue of their experience of illness.
In the traditional African Xhosa culture, becoming a healer is a process that involves experiences of illness, physical injury and pain. One of the Xhosa rites of initiation is Thwasa, a state of illness. The person experiencing it will undergo ailment and pain of body and mind and be made to suffer stomach aches, nervousness, and severe ache in the back, as well as possible periods of unconsciousness. During these attacks, this person might also become emotionally withdrawn and be troubled by dreams. Thwasa is crucial for becoming a healer. Illness is regarded in this case as the state through which communication from the person’s ancestors occurs. In Xhosa culture, it is believed that a person is chosen to protect and heal people by becoming an igqira (healer), and his ability to enter a state of Thwasa is both a part of his training and an indication that the ancestors have preferred him. The process of Thwasa demonstrates how close this tradition is to the Western concept of the wounded healer: the interpretation of illness in Xhosa society is based on the rationale that it is from experiencing illness that the person undergoing training will learn how to observe, diagnose and treat other people’s illnesses.
By contrast, in modern medicine, ‘the nature of doctors’ training results in a deep rooted sense of being special and the institutionalisation of [our] professional identity’ which (re)enforces the divide between us, the healthy doctors, and them, the sick patients. But it is not only our good health, but also our refusal to ‘give in’ to sickness that divides us.
A qualitative study of GP attitudes to their own health summarised the views of 27 GPs by means of an ‘informal shadow contract’ which emphasised this attitude,
I undertake to protect my partners from the consequences of my being ill. These include having to cover for me and paying locums. I will protect my partners by working through any illness up to the point where I am unable to walk. If I have to take time off, I will return at the earliest possible opportunity. I expect my partners to do the same and reserve the right to make them feel uncomfortable if they violate this contract.
In order to keep to the contract I will act on the assumption that all my partners are healthy enough to work at all times. This may mean that from time to time it is appropriate to ignore evidence of their physical and mental distress and to disregard threats to their wellbeing. I will also expect my partners not to remind me of my own distress when I am working while sick.
Last Wednesday as I cycled to work, I rode far too fast over the cobbles at the end of the street, barely 100 meters from my surgery. I went flying. My left hand hit the cobbles, hard. It hurt a lot more than I was expecting. I arrived and scrubbed the dirt out of a bleeding hole in my palm and asked our practice nurse to help me put a dressing on it. But most of the pain was coming from the base of my thumb, and I suspected strongly that it was fractured (broken). I had an evening surgery with 15 booked appointments; three of them were patients with severe learning difficulties here for an annual check up. So I took two paracetamol and saw my patients. I finished at 8pm and cycled home – about 25 minutes in the dark. I was too tired to go to hospital and so the following morning I went to A&E and an Xray confirmed a Bennet’s fracture and I left in plaster. I did the same thing when I fractured my scaphoid a few years ago.
A survey of British doctors back in the ’90s found that 87 percent of G.P.’s said they would not call in sick for a severe cold (compared to 32 percent of office workers who were asked the same question). In Norway, a 2001 survey revealed that 80 percent of doctors had reported to work while sick with illnesses for which they would have advised their own patients to stay home. Two-thirds of these illnesses were considered contagious. Why Doctors Don’t Take Sick Days Daniele Ofri, New York Times
Not ‘giving in’ is an important part of the way doctors think about and judge themselves. Many would deny that they judged others in the same way, but doctors who have been patients give us reason to doubt that. The less frequently referenced continuation of Susan Sontag’s quote above is particularly perceptive,
‘[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’.
Despite the biological substrate of clinical depression or the genetic underpinnings of alcoholism, many physicians still believe these disorders are evidence of a lapse of will or moral failure, especially when they appear in other physicians.
Stigma, shame and loneliness.
The divide, and the associated fantasies are nowhere stronger than in mental health. Perhaps unsurprisingly then, the majority of the doctor-patient narratives I found were about mental illness. 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. The Australian Beyond Blue study 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.
Many patients experience shame and stigma, and in one study 71% of doctors described themselves as embarrassed when seeing another doctor. Doctors with mental illness appear to be particularly vulnerable, as described by this psychiatrist with psychotic depression,
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.
Anya de Longh was forced to give up her medical studies because of a rare and severe neurological disease. In her latest blog she writes about the self-stigmatisation and shame that arose when the possibility was raised that some of her neurological symptoms couldn’t be explained by her disease,
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!
Shame is associated with drug and alcohol abuse, both of which are more prevalent among doctors than their non-medical peers. Shame also causes social withdrawal and isolation and stops us seeking help when we need it, because we are too strong, or not worthy;
We feel shame and we fear being judged and stigmatized so we tend to suffer in silence and carry on in a profession that prides itself on stoicism and bravado Wallace
Shame is feeling that I am not worthy of love, care and attention … Underpinning shame is excruciating vulnerability, the fear of being seen as we really are.
Brené Brown: The power of vulnerability
Sometimes it is a more-straightforward denial that stops us seeking care, as explained by this 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. An insiders guide to depression.
Many doctors spend so much time at their work that when they are unable to continue because of sickness, and are cut off from their busy peers, they become lonely and depressed.
The physical effects of illness compound this, as these two young doctors with metastatic cancer explain,
I had unfailing family support and the best treatment available, yet I have experienced the acute sense of isolation and, occasionally, the despair endured by many cancer patients Tertoma of the Trestis. Lancet 1982
Unpredictable, treatment-induced fatigue means I can’t reliably attend social events. I dread small talk. The inevitable “What do you do?” “I’m not working, because I’ve got cancer.” “Oh, you’ll be fine.” “Um, no, actually; I might not be. It’s quite advanced. Miracles happen, though” “Oh.” Person exits right to stiff drink. (The other version of this conversation concerns my now-permanent baldness: “But of course your hair will come back.” “Actually no.” “Oh.” Exit right. Etc.) I don’t blame people for coming to an abrupt halt in the conversation: what are they supposed to say? Before I got ill, I was exactly the same. Who wants to talk about the precarious nature of life and death when you could be networking? Social events aren’t designed to hold these kinds of conversations. Anna Donald
Seeing a patient as a person
One of the most common themes to doctors’ accounts of being patients was the importance of being seen as a person.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability Hippocratic Oath – Modern Version
One time medical student and now full-time patient, Anya De Longh 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.
Dr Kate Granger, revealed in several passages in The Other Side how shockingly often healthcare staff failed to introduce themselves, such as on this occasion when she was admitted to hospital with an infection due to complications from her chemotherapy,
I am laid on a trolley in the emergency department feeling extremely unwell. My temperature is 39 C and my pulse is 150. It is about 36 hours since I underwent a routine extra-anatomic stent exchange, and I have developed sepsis. A young surgical doctor clerks me in. He does not introduce himself by name, instead plumping for, “I’m one of the doctors” A nurse comes to administer my IV antibiotics. She does not introduce herself at all. Over the 5 day admission I lost count of the number of times I have to ask staff members for their names. It feels awkward and wrong.
In my experience, medical students rarely ever fail to introduce themselves, but once they become infected with the culture of working life, they (we) slip into bad habits.
Kate’s campaign to get us to start introducing ourselves again is called, #hellomynameis. She explains;
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.
When was the last time you stopped and had a conversation with someone on the ward just for the sake of having a conversation? We all blame being too busy on not doing this but are we really? Do we not have 10 minutes to sit down and explore someone’s worries? Having a chat can be therapeutic in itself. I know this. A few months ago when I was struggling with the uncertainty of my prognosis and the effect this was going to have on my career I had a long chat with my Oncologist. There was no examination, no diagnosing, no investigations and no prescribing; just talking. And it helped. It really did. Kate Granger
Continuity of care, the deliberate organisation of patient care so that the same doctors and nurses attend to the patient, was mentioned by several doctors. Having a serious, complicated illness and feeling exhausted doesn’t leave patients in the mood for answering the same questions over and over again. As medical sociologist and anthropologist Arthur Frank writes, “Th[e] structured disruption of continuity of relational care is more than an organisation problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other.”
Poor standards of care and medical scepticism.
Lack of courtesy is just one aspect of poor care. Many doctors dread illness because they are acutely aware of modern medicine’s weaknesses and limitations. Albert Klitzman interviewed doctors who were patients for his book, When Doctors Become Patients,
[Doctors as patients] also became aware of how many mistakes are made, like the wrong dose of medication. They were astonished by that.
Kate Granger gives another example,
The following morning I notice that MRI is written next to my name on the ward white board. At first I wonder if this is just an administrative error and it is actually meant to say ultrasound. They wouldn’t have requested an MRI without talking to me first surely. I get claustrophobic sat in the back of a three-door car so the thought of having an MRI is not a pleasant one.
The next thing I know a porter has arrived with a wheelchair to take me for the mysterious MRI. I question if it is a mistake so we read the medical notes. A discussion between my Consultant and the Gynae-Oncology team is clearly documented the previous evening suggesting an urgent MRI abdomen and pelvis in addition to the rest of the management plan. I can see that it is a completely appropriate investigation but I’m absolutely fuming she did not bother to discuss this with me. As I have no other choice I sit myself in the chair and am wheeled off to the scanner. My heart is pounding the whole way. The Other Side
After I gave this presentation to the Guy’s and St Thomas’ medical students, several described how shocked and disappointed they had been at the standards of care they had seen when they had accompanied relatives to hospital. Often it related to junior doctors trying to cover up for their obvious lack of knowledge, giving an evasive answer instead of saying ‘I don’t know’. When I fractured my finger last year I watched a junior orthopedic surgeon attempt to put a wholly inadequate splint on it and even when challenged, he persisted. Among the narratives I have read, communication skills are at least, if not more of a concern than clinical skills, as Campbell Moreland, the young GP with metastatic testicular cancer described,
In March, 1980, I underwent chest tomograms and a creatinine clearance test. I suspected lung secondaries but was not informed. I asked a junior doctor about my X-ray results. He went to the X-ray department, came back, and told me the films were normal. I know this was a blatant lie, as did he. My trust in him was irreversibly damaged. How much better had he said, “I don’t know, but I’ll find out. If it is bad news do you want to discuss it?” Junior doctors are shy of giving a patient bad news because they are afraid both of the patient’s reaction and of their consultant” Tertoma of the Trestis. Lancet 1982
The third day of admission brings me some examples of doctor’s communication skills being the worst I could possibly imagine under the most painful of circumstances. First thing today I have been crying. It is the day of the MDT meeting, 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 it must be bad news. I’m laid in a hospital bed sobbing and scared, about at the most vulnerable a patient could be. Kate Granger
Other doctors who had been patients appreciated the anxiety patients suffered whilst waiting for results,
Many ill doctors now came to identify more with their patients (e.g., getting results to patients faster); gay doctors with HIV who treated members of the gay community often encountered this issue with added urgency. Klitzman
Medical knowledge also makes doctors more aware of the limitations of medical care. Of particular note, doctors choose less intensive treatment at the end of life than they recommend for their patients.
Faced with a terminal diagnosis some doctors turn to alternative therapies and become more interested in the spiritual aspects of care. In his academic account of doctors as patients, Albert Klitzman was particularly moved by this,
Their scientific training did not inure these physicians against irrational, nonscientific beliefs and behaviors. The degree to which “magic” and irrationality persisted in the lives of these scientifically trained doctors surprised me. They often perceived medical knowledge as overrated, and magically imbued. Despite this age of ever-increasing scientific knowledge, magic endures.
Dr Anna Donald blogged for the British Medical Journal about her experience as a patient with metastatic breast cancer. She was an exceptional academic in the field of evidence-based medicine, and yet her blogs are full of descriptions of prayer and meditation. She described the value of massage and alternative diets, and became a firm advocate of Emotional Freedom Technique (EFT)
Our professional identity shapes what are often destructive attitudes towards ourselves and our patients, especially when the diagnosis is unclear, the symptoms hard to treat and the prognosis poor.
Protests from patients that doctors are too busy to talk or that we lack sympathy or empathy are often met with defensiveness and excuses, but doctors who have experienced the isolation, fear and despair of serious illness are keen to emphasise the importance of humanity in care.
Our colleagues who have suffered as patients often feel compelled to report back, and what they have been telling us has been remarkably consistent over the years. It is time we paid more attention.
I conclude with a quote from GP, Dr Liam Farrell, who wrote about his experience of, and recovery from addiction,
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.