I have been a doctor for over 20 years, 5 in hospital and 15 in general practice. I have been on the receiving end of medical errors and have made complaints about my own care, and the care of family members, who are not doctors and have lacked the confidence to complain, even when complaints are clearly justified. I have also been on the receiving end of serious complaints from patients, I have been successfully sued and had cases against me investigated by the Parliamentary Health Ombudsman.
Any doctor who has practised more than a few years will know that the vast majority of medical errors are not noticed, ignored or covered up – and though the majority of these don’t cause any serious harm, a minority do. Any doctor who has practiced as long as I have, will, like me, have personally contributed to a patient’s death. Doctors are aware that most patients and their families do not complain even when they are aware that there has been an error and when they have had very reasonable grounds to complain. I have had to make complaints on my patients’ behalf because they were afraid or insufficiently literate/ articulate to do so themselves. I know that most of the time, complaints are dismissed. When patients do complain, clinicians know that the majority of complaints are not about issues involving patient harm or clinical decisions, but about problems where patients and their families feel more confident, for example; lost dentures or professional attitudes, cancelled clinics, lost results or other organisational issues. Doctors know that the worst of their colleagues seem to be immune to the complaints they deserve, while the most conscientious are prone to the most vexatious.
Dr Bawa Garba was forced, under stress to write down everything she could think of that she personally had done wrong. The person who forced her to do this wasn’t a prosecuting lawyer, but her clinical supervisor, the consultant who should have been supporting her on the day that Jack Adcock died. He did not help her think through what had happened in a place and at a time suited for reflective thinking. He made her write a list of everything that she had done wrong in a hospital canteen. He then made her upload the list as a ‘reflection’ in her educational eportfolio. This is not medical education as I or any other medical educator would practice it, but too many doctors’ experience of ‘reflection’ in medical education is shallow, critical, unsupportive and frankly, unreflective. If anyone in this case was ‘truly, exceptionally bad’ it was this doctor, Dr Stephen O’Riordan.
To make matters even worse, the media is a menace – fanning the flames of fear, pitting doctors and families against one-another and baying for vengeance and then moving on to the next story before the dust has settled.
In very little time at all doctors learn from experience that complaints are no measure of a doctor’s moral character or clinical competence. Doctors and patients learn that justice is rarely achieved.
Consequently, many doctors grow cynical, hateful of the GMC and the tabloid media and suspicious of patients. And a growing number of patients are losing trust in medical professionals.
These are problems of culture and psychology far more than they are technical and legal.
The solution must therefore involve an honest acknowledgement of the cultural milieu that doctors and patients inhabit. Doctors live in fear of patients discovering the mistakes they make and patients live in fear of being harmed. Both have good reason to think that the system is unjust. The solution must bring patients and clinicians together to have honest conversations that bring about what Richard Lehman has described as the ‘shared understanding of medicine’. It must include much greater transparency including shared medical records, patient safety reports, transparency about organisational pressures and what the NHS can afford. Patients and clinicians do need safe spaces where they can learn from mistakes apart from one another, but this should not and need not reduce the requirement to have shared learning as well. Only by making alliances with patients (contra pharma/ commercial healthcare) and by treating patients as expert partners in care (and part of the solution) rather than a burden / problem, can we change. Medical educators and supervisors must take reflection seriously and learn how to use it as a force to challenge and change medical culture for the better. Finally – as Dr JulianTudor Hart has argued, ‘Accountability must require that doctors insist that they have time to do their work properly’.
For any readers based in Hackney where I work, I’m reposting this in response to Saturday’s SAFAPLACE conference at Stoke Newington Secondary School. What was an excellent conference was notable for there being no discussion about the impact of adverse childhood experiences. I’m very grateful to discover Elizabeth’s work
Throughout my twenty year career as a psychologist working in Specialist Children’s Mental Health Services (SCAMHS) two frequently repeated mantras have been amongst the biggest sources of frustration for me:
“It’s a social problem, not a mental disorder” and “the child needs to be stable to access therapy”; the latter often responded to with the helpless reply “but the child need’s therapy in order to be stable”. Indeed, much of the tension between Health and Social Care can be boiled down to these two themes.
I understand, of course, that service design and a splitting of health and social care lies at the root of this; along with a scarcity of resources and a need to carve the work up somehow. However, as a psychologist employed by health, I see a child’s context and life experiences as fundamental to their mental health and emotional wellbeing. Ironically, when it comes down to individual…
An unhappy patient comes to a doctor to offer him an illness – in the hope that this part of him, at least (the illness) may be recognizable. His proper self he believes to be unknowable. In the light of the world he is nobody: by his own lights the world is nothing”
But if the man can begin to feel recognised and such recognition may begin to include aspects of his character which he has not yet recognised himself, then the hopeless nature of his unhappiness may have been changed; he may even have the chance of being happy.
John Berger, A Fortunate Man
“One of the greatest diseases is to be nobody to anybody”
After a few weeks of watching second year medical students talk with patients I have been wondering about where, when and how empathy is lost during medical education and clinical practice.
The students enjoy talking to patients and listening to their accounts of living with diseases such as Parkinson’s disease, fibromyalgia, depression, heart disease, and diabetes. They are moved by suffering and curious about patients’ lives and their life histories. By so doing, they show natural affective and cognitive empathy.
My patients enjoy coming in – they don’t have the pressure of a 10-minute appointment within which they have to condense their symptoms into a problem to be solved for a stressed doctor who is running late. They have up to an hour of conversation without a goal in mind. They are under no pressure to impress their doctor with their weight loss or better medication compliance. Seeing the students looking more anxious and even less sure of what to say than they are themselves, they enjoy a levelling of the usual differences in power and confidence and take the opportunity to guide and reassure the students. We call them ‘patient-educators’ in recognition of their role.
Epistemic justice in healthcare is when patients have sufficient opportunity to give an account of themselves and their symptoms and the meaning and significance that they ascribe to them. We see this in the patient student encounters and encourage it.
Cognitive empathy is the ability to understand another person’s life and experiences. Affective empathy is the capacity to be emotionally moved by another person’s experiences.
With time and experience of these kinds of conversations, students learn that often patients need doctors to ask ‘the questions whose answers need to be told’. Patients won’t just volunteer information unless they can trust them. Trust can be gained by the student proving, by the questions that they ask, that they are aware that certain illnesses are associated with symptoms that might be embarrassing, experiences that may be hard to talk about, feelings that might be shameful, social stigma, prejudice and alienation. My students, my patients and I learn this together.
How, why and when is this empathy lost?
Understanding grows with experience, but opportunities for informed, compassionate, curious questioning can be squeezed out by pressures of time and the demands of specialism.
Students are expected to ‘take a structured medical history’. Conversations which once followed cues, in an attempt to understand and make sense of experiences are gradually replaced by structured interrogations guided by computer templates.
When they qualify the consultation will be less about understanding than gathering data for the health-service they are working in – because information that can be coded as data can be used for performance management, quality improvement and financial remuneration. The fruits of empathy – stories about meaning, context and experience that are unique by virtue of their subjectivity will be buried in the electronic record as ‘free-text’ – only available to those who know where to look. To satisfy the need for data, symptoms are defined as disease – headaches become migraines, dry skin – eczema, joint pains – osteoarthritis, back pain – ‘lumbar disc degeneration’, grief – depression, destitution is coded as ‘generalised anxiety’ and people who have suffered abuse are labelled with ‘personality disorders’.
In trying to visualise these different demands on a consultation, the pressure of time, the structure of a medical history, diagnostic coding, and data surveillance, I imagine a pie-chart being divided into ever smaller slices – and am reminded that over time, the patient has been squeezed out. Epistemic injustice takes over.
In time, students will become doctors who have learned to distinguish illness and diseases they can treat from those they cannot. And this, rather than the nature and degree of suffering will be their chief concern.
Affective empathy is lost when clinicians become hardened to suffering. The first patient they meet with depression or a terminal illness can be an intensely moving experience, but over time, especially if they are exhausted and hurried, and unable to attend to their own emotions or reflect with their colleagues, threatened in an unforgiving culture, they may lose their capacity to be moved.
I think that empathy is lost in medical education and clinical practice. Perhaps one reason is because we don’t value the empathy our students have to begin with and don’t do enough to nurture it.
If we pay more attention to this as well as the factors that undermine it, we could do more to help it flourish.
Up until June 14th 2004 Joe was a consultant anaesthetist at a London teaching hospital. That day at work, during an operation he had a panic attack. He froze and as if in a trance, walked out of the operating theatre. The patient suffered serious harm and Joe was suspended from work and struck off the medical register. He hasn’t worked since. After he was struck off, he was referred to a psychiatrist for assessment who diagnosed Generalised Anxiety Disorder and Obsessive Compulsive Disorder and started him on the first of what was to be, over the next few years, many different psychotropic medications. He was referred for CBT (Cognitive Behavioral Therapy) and psychotherapy, which uncovered the extent of his anxiety, but did nothing to relieve his symptoms. On the day he walked out of the operating theatre, his life changed, from being outgoing and popular, he became reclusive and paranoid. His wife, a consultant surgeon continued to support the family, but they had to move to a smaller house and take their children out of private school.
I have been Joe’s GP since he left work and we meet about 3-4 times a year. Usually our meetings are quite brief. He always begins by gesturing to the waiting room and apologising for wasting my time, because there are people ‘out there’ who are much sicker than him, and I reciprocate by doing my best to assure him that I’m very glad to see him, and he is in no way wasting my time. Gradually we have established trust and a good rapport. I’ve not delved too deeply into his past before, partly because I’ve assumed that it’s something he’s been going over in therapy, and partly because our consultations are usually preoccupied with his present circumstances and working out issues with his latest drug treatment. At present he is taking two antipsychotics, two sleeping tablets, and an antidepressant. This makes me anxious and appears to have done little for his anxiety.
Unlike the transient anxiousness that naturally follows a traumatic event, when the symptoms are severe and enduring there is always a back story, but discovering it can take a very long time. The acute symptoms need to be tolerable and trust needs to be established. In writer/ editor Scott Stossell’s account of anxiety, My Age of Anxiety he asks ‘where has my anxiety come from?’ and explores, in detail, the complex aetiology which includes family history, early life experiences, human biology, social, environmental and political factors. All play a part. Psychiatrist Linda Gask asks the same question about her depression in her book, The Other Side of Silence and comes to the same conclusion. I have a strong family history of PTSD, so I have a personal interest.
I recently asked Joe where he thought his anxiety came from. “You know”, he said, referring to the panic attack in 2004. “That’s when my life changed, I was fine up until then”.
“Yes, I mean, is anxiety a family trait, were your parents, grandparents, siblings and so on anxious? Could there be an anxious gene?” Joe’s posture shifted, he folded his arms, his shoulders became more tense, his hands clenched. “No, not really, my sister perhaps, but we’re not really close”. I knew that Joe grew up in Leeds, he was the first doctor in his family and the first to go to university. I knew his sister had suffered with depression and had tried to commit suicide, but little else.
“What about your parents?”
“Not really. My dad was a bastard though. He would slap my mum about and smash the house up. My sister and I hated him”. Joe’s posture became more tense, he gritted his teeth and crossed his legs. “I remember this holiday when I was fourteen – we were going to Blackpool and I refused to go, I locked myself in my room and refused to leave. My dad tried to batter the door down, but couldn’t so he just said, ‘Fuck it, we’re going without you’. And they went without me for a week.”
Joe and I sat in silence for a while. He was curled up on the chair, trembling. Just as we imagined him as a 14 year old boy, this 50 year old anaesthetist besides me.
More came out. He has always been anxious, but was able to hide it, he threw himself into his studies and spent time his evenings in the library to avoid confronting his dad, and got into medical school where he did very well. After he qualified the anxiety became more of a problem with the pressure of work, especially when he met with emotionally distressed and traumatised patients. Anaesthetics seemed to be suited for him, but as he got older, especially, once his children began to grow up, his anxiety became harder to contain. Rather than risk being labelled he avoided going to a doctor and started using drugs from work. Soon this escalated and he was using Fentanyl (a strong opiate) until he realised he was addicted. He was trying to wean himself off and had almost succeeded, when he had the panic attack, probably due to the withdrawal effects.
“Nothing the psychiatrist has prescribed worked as well as the Fentanyl”, he said. “I was fine on that, never missed a day at work, never made a mistake. You won’t write this down, will you? I’ve never told anyone about it before.” “Didn’t they test you?” I asked. “No, and I would probably have been OK, because I was basically already doing cold turkey that day. If you could prescribe me Fentanyl now I’d stop all this other stuff, because it was the only thing that ever worked. But I know you can’t do that”.
Fentanyl like a lot of other drugs, especially opiates, psychotropics, neuroleptics and anti-depressants, for example heroin, naltrexone, Quetiapine, Pregabalin, Amitriptyline and so on, as well as alcohol – all help patients to dissociate. Dissociation is like the outer-body experience that a frightened child can achieve naturally and spontaneously as a defense. As we grow older our brains become less flexible and it becomes harder and harder to dissociate and so we use exercise, or work to cope. It is one reason why there is often a gap of decades between trauma and its aftermath. With time, it becomes harder still and strategies become addictions. For Joe, Fentanyl kept the frightened child separate from the competent anaesthetist. Nothing he has been prescribed since has been as effective.
The child that was terrified of their dad is despised for being afraid and is shameful. The high achieving child that went to university and became a successful anaesthetist is the self that is socially and personally acceptable. We all have different selves, doctor and dad, cyclist and mother and so on, but the traumatised self is despised and a source of shame and so the split is extreme and has to be maintained by any possible means of dissociation to fend off the intense anxiety that it brings.
Too much of the time I think we are content to continue to prescribe drugs to patients under the illusion that they are treating a disease rather than helping them dissociate. In some instances what we prescribe can help keep the symptoms at bay, but most of the time the anxiety persists, no matter what we prescribe.
Drugs probably do have a place in treatment, but so do top down (psychotherapeutic) and bottom up (physical) therapies that enable patients to reconnect with the traumatised self through their body and mind. We could both see how Joe’s traumatised self was inhabiting his tense and hunched body, it wasn’t just in his head. For him to recover he needs to identify the traumatised child and accept him as a part of himself. After a lifetime of shame and dissociation this is no easy task.
I’m not sure why this kind of understanding is missing from so much of medicine. Perhaps because it means shining a light on ourselves as well as our patients, and recognising that we’re not so different after all. Perhaps it’s a post-Freudian backlash and an obsession with biology and objectivity that is blind to subjectivity and experiences. Perhaps it is because financial incentives are constraining clinical curiosity – demanding that every patient narrative is recorded as a clinical code. Perhaps it is a fear of judging parents or others who are not around. Probably it is all of this and more.
One thing I am sure, is that some of the kindness and compassion that is so often missing in healthcare, in the ways we treat ourselves, our colleagues and our patients, could be recovered if we were more attentive to what makes us who we are.
It’s often assumed that it is good to talk. But talking is not without risks.
The main mental illnesses/ symptoms that patients present to me (a GP) are chronic anxiety +/- OCD and PTSD +/- chronic depression.
Chronic anxiety and chronic depression are like chronic pain, in that the symptoms persist in the absence of a causative stimulus. Which is to say that the nervous system generates and sensitizes you to anxiety/ depression/ pain of its own accord. It is not to say that if you have chronic pain, it won’t help to have me stop stepping on your toes, or if you have chronic depression it won’t help to have financial security or if you have chronic anxiety it won’t help to get away from a violent partner.
Without a clear explanation for these chronic symptoms, sufferers and clinicians inevitably spend a lot of time alone and together trying to figure them out. Uncertainty abounds.
Care of patients with chronic symptoms requires time to build trust and a therapeutic relationship. This develops through talking (dialogue). What we discover by talking is what it’s like (the phenomenology), where it comes from (the biology and the biography) and what it means (the hermeneutics).
Trust and time
Feminist, activist and professor of psychiatry Judith Herman warns that we may push for more facts before the patient has had time to deal with the emotional impact of the facts already known. Before exploring the past, it’s important to understand the present. Cognitive empathy is informed curiosity – asking questions that prove we’ve got an idea of just how bad anxiety and depression can be, but are sincere in wanting to know what it’s like specifically for the person in front of us. As one of my patients told my students, “I’m not going to open up if you don’t know where to look”
Quite frequently the physical symptoms of anxiety are so severe that it’s barely possible to get into the psychological side of things. Incontinence, breathlessness, chest pain, severe headaches, spasms and so on need to be attended to first. This can take time.
Once these are within reasonable limits the patient (and the doctor) need to be able to bear the emotions. Joanne Bourke, historian of Pain, says that the problem with pain [suffering] isn’t just that it’s hard to talk about it, but that it’s painful for the listener. I think I can bear to bear witness to suffering, but it is exhausting emotional labour. We have limits on how much we can hear, but as professionals we need to work on these.
Next, the patient needs to have authority over her memories; she needs to be able to choose what to remember and what to put aside. It’s not up to the doctor to decide.
There may not be a story to tell
Traumatic experiences happen when stress hormones like adrenaline and cortisol are surging. Because of adrenaline the experiences are only partially stored as memories and because of cortisol the storage is disorganised.
Experiences become stories by the acts of telling and re-telling. Traumatic events are not the stuff of anecdotes, they aren’t turned into stories, mostly they are the symptoms of fear, agitation, arousal, dread, pain, bloating, fatigue, sweating and palpitations – The Body Keeps the Score. Recalling traumatic experiences is traumatic – which is why the preconditions above matter. The consequence of all this is that there may not be ‘a story’ to tell, let alone one that makes sense. At least not to begin with.
Telling someone that you are suicidal, that you have everything in place to take your life – is a risky strategy – good ways to respond, from the perspective of someone who knows what it’s like are in this brilliant blog which I’ve had reason to refer to already, twice this week. But an unsympathetic ear, or a panicked response – can be catastrophic.
Working back from present symptoms to past experiences takes time. This week I spoke to two patients I have known for about 10 years and started hearing about their trauma for the first time. Without continuity of care, and trust that can develop over time, these kinds of conversations might never happen.
Every patient has their own unique story
Underlying their anxiety and depression, one person will have a strong genetic prediposition with a secure childhood, another will have have suffered abuse and another will have suffered significant losses in early life, for other the cause will remain a mystery. The aetiology of mental suffering is complex and varied. How much genes, attachment, experiences and so on contribute to each person’s presenting symptoms can be hard to judge. I think it’s important to help patients figure out what’s significant to them, bearing in mind that self-blame can be predominant and we can help to shift that. Often though, there is someone to blame; too many children are abused and too few of those responsible are bought to justice. But we have to avoid blaming others when there wasn’t abuse and when it’s not clear what has happened.
Groups are often very powerful – validating, empathic, non-judgemental – far more so than professionals. It is tempting for professionals to try to ‘fix’ people’s problems when what they need is to be cared for, because a lifetime of anxiety and depression cannot be cured. Talking may be much easier with people who share their experiences, but without respect and facilitation groups can be undermining.
Being mentally ill can make people very vulnerable to exploitation, fearful and acutely sensitive to the ways that other people respond to what they have to say. These feelings are not just symptoms of their illness, but an entirely rational response to the ways they have been treated in the past. Talking is good, but more of the responsibility needs to lie with the listener.
Talking is not enough
Once you’ve talked to more than a few people suffering from mental illnesses, it’s obvious that social injustice, violence and stigma, not only cause illnesses, but worsen them and impede recovery. Political action is imperative. This is why so many people who work in this field, like Judith Herman, Jay Watts and many more are clinicians and activists. If you’re good enough to listen, you need to take action as well.
We need properly funded mental health services, and well-trained health professionals. We need Trauma-informed health services throughout the NHS. Talking does help, but we need more treatment too.
One of the most haunting images from my time as a junior doctor working in Hackney in the mid-1990s was in an A&E (emergency) department while we tried to resuscitate a man in his 40s. In the corner of the room stood two young children – probably about the same age mine are now, 6-8 years old. They stood and stared in silence, watching us trying to save their dad. He was covered in blood and bile, his body yellow with jaundice, veins visible on his abdomen and torso from advanced, alcoholic liver disease. His wife was in another part of the department, so intoxicated she couldn’t stand, barely conscious and unaware of what was happening to her husband and children. The children were eerily impassive. The ambulance crew told us that when they arrived at their flat, they were trying to wake their dad while their mum lay unconscious, snoring in the next room. The flat was squalid and the children were obviously severely neglected. By now they will be in their mid to late 20s, assuming they are still alive, possibly with kids of their own. I wonder what became of them.
A lot of my time in A&E in south east London was spent with young people, mostly women and girls who cut themselves or took overdoses. I absorbed the culture of my workplace – where they were usually treated as ‘timewasters’ and where ‘PD’ which stands for ‘Personality Disorder’ was a term of abuse. I quickly became aware that all of them had been abused (usually sexually) or neglected severely, but I struggled to find anyone who knew what we could do to help, and faced with our own helplessness we continued to patch them up, push them away, and complain about them wasting our time. I remember one night meeting a teenage girl who wanted treatment for sexually transmitted infections, she refused to be examined, protesting that it was too sore, too smelly and too embarrassing. She looked terrified. I was the only doctor in a busy department in the middle of the night – she slipped away before I had an opportunity to find out any more.
I rotated between junior doctor posts, driven by a mixture of curiosity and an inability to commit to a specialty at an early age. After A&E I worked as a junior surgeon and gynaecologist where I met dozens of patients (also mostly young women) whose enormous hospital records documented their repeated admissions, investigations and surgical procedures. We couldn’t explain their abdominal pain and bloating, pelvic pain and unexplained severe constipation or incontinence. Some of them also cut themselves, but mostly we examined the scars that criss-crossed their abdomens made by surgeons, looking for the source of their symptoms in the organs underneath.
I spent just 3 months working part-time in sexual health, barely long-enough to wonder why just a few young people (again, mostly women) accounted for such a high proportion of the visits.
As a young, naive paediatrician I saw kids with ADHD and other conduct disorders, many of whom had a dysfunctional home environment. Some were adopted, but we were strangely uncurious about what had happened to them before they were adopted. I met countless parents who were overwhelmingly anxious, who bought their children to hospital week in, week out. Some seemed to spend every Friday night in A&E. I focussed on the children and it hardly ever crossed my mind to think about what had happened in their own lives, or might still be happening, that rendered them so fearful.
I spent 6 months as a junior psychiatrist where I had a little more time to listen to patients, but many refused to talk for long to a doctor they had never met before and might never meet again. I struggled to find ways to find the information that mattered most to the patients I read their extensive discharge summaries but struggled to find out which events were the most significant in their lives. It was clear that mental ill health had a complex aetiology – which is to say that similar illness were clustered in families, were affected by experiences, and were worsened by deprivation, intoxication and isolation, most of which we had no ability to influence. For some people psychosis struck someone in the most stable of social circumstances, but for most it was chaos superimposed on chaos. We prescribed every new drug that came on the market, usually on the basis of the earliest trials and negligible evidence of benefit. The side effects – “They’ll make you fat and impotent!” one patient yelled across the ward as I tried to persuade another to try them, were more predictable than the benefits.
As time went on I realised that if I wanted to understand why people suffered from unexplained symptoms, chronic pain, anxiety, depression and psychosis I would need work somewhere where continuity of care was valued and protected.
For most of the last 17 years, I’ve been a GP working in Hackney in East London. We serve an increasingly economically diverse, but still very deprived, young, socio-culturally mixed group of patients.
A lot of what many people would consider to be ‘normal general practice’ – managing diabetes, hypertension, heart disease, minor illnesses and so on, is managed by practice nurses, specialist nurses, clinical pharmacists, GP trainees and salaried doctors. GPs like myself who have been around for long enough to develop therapeutic relationships with patients spend most of our time with patients who suffer from chronic pain, medically unexplained symptoms, addiction, eating disorders, severe obesity, self-harm, suicidal thoughts and mental health disorders; especially chronic anxiety, chronic depression, OCD, bipolar and personality disorders. Among them are our patients with the worst diabetic complications, the most symptomatic heart-failure, the most brittle asthma and out of control hypertension. They are the same patients who I met again and again as a junior doctor, who bewildered and frustrated me and my colleagues. They are still the patients who attend A&E most frequently and are most likely to fail to attend routine reviews. If they are not asking me to give them something for their chronic pain, debilitating anxiety and insomnia, for weight loss or breathlessness they need me to write reports for housing or benefits assessments. I, and thousands of doctors like me, spend every day caring for patients like this. One thing I have only very recently learned, is that Trauma is embodied.
What is extraordinary, and to be frank, a betrayal of patients and clinicians on the part of those responsible for medical education is that we never talked about, much less seriously taught about the lasting effects of trauma. We were taught that diseases were due to the interaction of human biology and the environment, but human experiences were barely part of the picture.
Julian Tudor Hart worked for over 40 years in the same practice in the Welsh Valleys and saw the same community after the mining industry closed down. Not only did unhealthy lifestyles and mental illnesses proliferate, but so did domestic violence and incest. Without meaning and purpose, for some people, morality collapsed.
For John Launer, GP educator and narrative medicine pioneer, medically unexplained symptoms are better understood as ‘medically unexplored stories’. Most GPs, especially those who work in deprived areas, bare witness every day to their patients’ accounts of trauma; including physical abuse and neglect; parents who were, because of alcoholism, drug abuse or mental illness unable to care for their own children in their earliest years; stories of material and emotional deprivation, abandonment and loss, domestic violence, crime and imprisonment and with shocking frequency, child abuse. Trauma begets trauma so that people rendered vulnerable by trauma in childhood are very frequently victims of violence and abuse in later life. Survivors of trauma use drugs and alcohol to cope with the aftermath, then find themselves involved with crime which leads to imprisonment and homelessness and further cycles of alienation and despair.
People whose work does not involved repeated encounters with survivors of trauma frequently either cannot believe, or refuse to believe how common it is. For years it’s been assumed that people invented stories of trauma to excuse bad behaviour. The medical profession bears a lot of responsibility for this, largely ignoring the psychological consequences of rape until the last 30 years.
In 1896, Freud presented the detailed case histories of 18 women with ‘hysteria’ – what might these days be labelled ‘Emotionally Unstable Personality disorder’. In every case the women described childhood sexual abuse. Freud thought that he had found the ‘Caput Nili’, the source, of hysteria, and presented his findings in anticipation of fame and possibly fortune. What he failed to anticipate was that the upper echelons of Viennese society were not prepared to accept that women with hysteria could be telling the truth and in so doing, implicating their own, privileged social circles. Freud was sent away to come up with another, more acceptable theory. His insights were buried and forgotten for most of the 20th century.
Ruby is imposing. She is six-foot-tall and one hundred and thirty kilogrammes. She rarely goes out, but when she does she dresses up – lots of gold jewellery – pink Doctor Martin boots, a huge, bright, African print dress and a gold, sequined stick. “Do you know how long it took me to get to know and trust my last doctor?” she has asked me, rhetorically, several times since we first met, about 10 years ago, after her last GP of 20 years left. “You know what I’m looking for in a doctor?” she asked, “Someone who looks comfortable when I’m sat in front of them”. How many times, I wondered, have patients looked to a doctor for help and empathy and seen fearfulness, frustration, confusion or worse; moral indignation or disgust. I know it happens. Dozens of studies have shown that the attitudes of professionals towards patients who are overweight, who self-harm, and who have personality disorders are at least as prejudiced as the non-medical public. I know I’ve done it before. But I think I’m more aware of it now, and I’m much better prepared to bear witness to trauma.
Ruby was sexually abused by her grandfather from the age of 6 to 9. When she told her mother, she didn’t believe her, her grandfather continued to visit and the abuse went on. When he stopped abusing Ruby, he started abusing her younger sister. Ruby started eating to protect herself – to smother her emotions, to make herself less attractive, to make herself more imposing and better able to defend herself. She fought at school all the time and was repeatedly excluded. She was never asked about abuse, but if she was, she would almost certainly have denied it. Happy kids don’t suddenly double in size and start fighting unless something terrible has happened. So many adults I look after who can recall the day when they suddenly stopped being a ‘normal child’.
In 1987, Vincent Felitti a doctor running a weight loss programme for severely obese adults in the US mistakenly asked a woman how much she weighed, instead of how old she was, when she had her first sexual experience. “Forty pounds”, she replied. “With my father”. He went on to interview nearly 300 other women attending the clinic and discovered that most of them had been sexually abused. He presented the findings to the American Obesity Association in 1990 and the response was almost the same as Freud had nearly 100 years before:
When he finished, one of the experts stood up and blasted him. “He told me I was naïve to believe my patients, that it was commonly understood by those more familiar with such matters that these patient statements were fabrications to provide a cover explanation for failed lives!”
We don’t like to talk about trauma because it’s very hard to accept that something so horrific should be so common, and the perpetrators, who are usually known, so normal. Most perpetrators of sexual violence, child abuse, domestic violence and rape, have no history of trauma of their own, and no evidence of mental illness. Coming to terms with this very uncomfortable fact means accepting that there is something very, very wrong with the way we are raising young men.
The doctors running the obesity clinic developed their line of questioning to include 10 categories of Adverse Childhood experiences listed below.
Not all categories are equally traumatising; the severity and duration of adverse experience is important in determining the extent of traumatic aftermath – the ‘trauma world’. 30-36% of people have no ACEs, but different-types of adversity go together, for example alcoholism, physical abuse and violent behaviour. The higher your ACE score the greater your risk of physical and mental ill-health and social disadvantage in the future. An ACE score of 4 or more increases the risk of heart disease 3-fold and Type 2 diabetes 4-fold. People with an ACE score of 4 or more are 6 times more likely to smoke and 14 times more likely to have experienced violence in the last 12 months. People with an ACE score of 6 or more have a life expectancy of 20 years less than those with a score of 0 because of illness, violence and suicide.
Clinicians should suspect trauma in people whose symptoms and behaviour are like those I’ve described, but we need to be careful not to blame every symptom on trauma. The symptoms and behaviours associated with trauma can occur in people who have not suffered trauma. The embodiment of trauma causes lasting physical changes to the brain and body, which combined with self-destructive habits, hugely increases the risk of serious diseases. We must not forget about biology while we attend to biography. Multiple physical symptoms and associated hyper-vigilance can make it very hard for survivors and clinicians to recognise when symptoms are not a manifestation of trauma. Knowing which symptoms to investigate, and how far to go needs an experienced clinician, but often, because survivors are seen as ‘difficult’ they end up with the least experienced.
Disconnection, Fearfulness and shame: The Trauma World
While the ACE studies show that trauma is associated with a wide spectrum of illness and adversity in later life, they fall short of explaining how or why this happens. The aftermath of trauma, for those who lack the good fortune to be sufficiently resilient, is a world of disconnection, fearfulness and shame, the ‘Trauma world’.
Disconnection / dissociation.
Many people who have survived childhood abuse describe how they could separate themselves, from the act by ‘an outer body experience’ –
“He’s inside me and it hurts. It’s a huge shock on every level. And I know that it’s not right. Can’t be right. So I leave my body, floating out of it and up to the ceiling where I watch myself until it becomes too much even from there, an then I fly out of the room, straight though the closed doors and off to safety. It was an inexplicably brilliant feeling. What kid doesn’t want to be able to fly? And it felt utterly real. I was, to all intents and purposes, quite literally flying. Weightless, detached, free. It happened every time and I didn’t ever question it. I just felt grateful for the reprieve, the experience, the free high”. James Rhodes, Instrumental.
Whilst children are quite adept at this and with practice can slip into states of disconnection quite quickly, it is harder for adults. The aftermath of trauma, the trauma world, often persists or may even manifest for the first time, years after the abuse has ended. Alcohol is one of the most potent and effective dissociating drugs. Addiction specialist Hanna Pickard describes, in a radio 4 interview, the occasion when she found herself in the back of an ambulance with a broken shoulder having been knocked off her bicycle in a crash that also involved her two young children. The effect of the morphine was to profoundly dissociate her from the pain in her shoulder. She understood then how if she had also been suffering the unbearable agony of her children dying in the accident, it would dissociated her from that pain as well. Sedative drugs prescribed to treat chronic pain and chronic anxiety – opiates, anti-epileptics, antidepressants and benzopdiazepines are almost entirely unselective – they even numb the pain of trauma, hopelessness and despair.
We can disconnect from memories and aspects of ourselves that we cannot bear or are afraid to acknowledge without drugs or alcohol. For some people, excessive work or exercise can achieve similar effects, especially when it involves pain and self-sacrifice and can even drive exceptional success in academic or athletic performance. But in spite of this, because trauma profoundly affects the sense of being worthy of love, attention and respect, this success is rarely matched by positive relationships with other people.
One of the ways that people who have experienced trauma, especially abuse, rationalise what has happened is by blaming themselves.
The overwhelming sense of being deeply flawed and unworthy of care and attention makes it very hard to convince people who have suffered trauma that they deserve the care that they are entitled to. They can be very hard to engage with care, and are often excluded because they can be chaotic and have different priorities – safety, money, housing and so on, to clinicians. Self-harm through neglect, and unhealthy behaviours are much more prevalent among people who have experienced trauma, as is more direct self-harm like cutting and suicide.
Doctors, nurses, receptionists and others who work with people who have experienced trauma and suffer the trauma world that comprises trauma’s aftermath, know very well how overwhelming and contagious patients who suffer severe anxiety can be. From repeat attendances, especially to A&E and out of hours, to panic attacks and aggressive behaviour, the emotional labour, sometimes referred to as secondary trauma, of caring for people who are very chronically, severely fearful is exhausting. A child who has experienced trauma is constantly vigilant, always on edge, prepared for fight or flight at all times. This constant tension and hypervigilance leads to high-levels of hormones like cortisol, adrenaline and noradrenaline, tense physical posturing or the opposite – cowering; hypertension, breathlessness, chest tightness, irritable bowels; and over time chronic pain, heart-disease and eating disorders – especially when they represent a battle for self-control. The constant fearfulness becomes an inseparable part of the traumatised person’s identity, so that it becomes impossible to relate the physical symptoms to ‘anxiety about a thing’. Somatic symptoms lead to the fear that a fear that there is something wrong, some awful disease in their stomach, chest, brain, or wherever the symptoms are felt. Faced with patients whose anxiety and physical symptoms are overwhelming, clinicians frequently resort to medical investigations, often in a futile attempt at reassurance, to allay their own anxiety or because it’s easier to talk about the diseases they don’t have than the stories they do. Because the risk of biological disease is so much higher for these patients, the tests aren’t entirely without justification, but most of the time they serve to distract rather than reveal the underlying causes.
Feelings of safety, security and trust in other people are laid down in the very earliest years of life. Deprived of this, anxious babies become frightened children and fearful adults. Desperate for human connection, they often make intense attachments with others, and then terrified that they will be broken off, in part because of their own intensity, they sabotage the relationship before the other person lets them down – as has happened so many times before.
Resilience and protective factors
Because resilience is conflated with moral character- to be resilient is to be seen to be courageous, stoical and strong – the flip-side is that people who suffer more are assumed to be less resilient. All survivors of trauma have have survived by virtue of extraordinary resilience. Those who suffer more, don’t lack resilience,and certainly don’t lack moral character, but suffer more because their trauma was more severe, more prolonged or incurred at a younger age or more vulnerable time in their lives.
Another reason for suffering more is a lack of protective social factors. Almost certainly, but very difficult to prove, the most important is a long-term relationship with an emotionally stable adult. The worse the abuse, and the younger it starts, the harder it is for people to achieve this – an inability to trust other people becomes part of their personality. Afraid that their victims might develop a relationship with anyone else, abusers frequently do whatever they can to stop this happening. Many GPs find ourselves in the position of being the ‘only emotionally stable adult in a victim’s life’. I went for years knowing, or at least suspecting that this was the case before understanding the links with trauma.
Socioeconomic factors can be protective – but only up to a point, as the many survivors of trauma from privileged backgrounds have testified. But severe deprivation can be traumatic in and of itself and exacerbate the effects of other types of trauma.
Trauma in contexts of deprivation may lead to survivors spending their lives being shunted from one crisis service to another, from temporary accommodation to emergency shelter, from one GP to the next. Just as they’ve begun to trust and confide in someone, they are uprooted and moved on. To make matters worse, doctors are taught to be afraid of dependency, to view it as ‘disempowering’ patients, and/ or as a symptom of their own unhealthy/unprofessional need for human connection. Some neglect continuity of care, others actively avoid it. For Arthur Frank, medical sociologist and anthropologist, ‘The 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’. In an age where independence and individual autonomy are moral virtues, it is shameful to admit that you need human connection.
Being able to make sense of what happened is often very hard. Abuse is so often done by people who should have provided kindness and protection to a vulnerable young person. It is heartbreaking, but understandable that victims frequently rationalise this by thinking, ‘it must have been something about me, something I did, or said – it must have been, at least in part, if not wholly, my fault’. Abusers sense this and feed into it, telling their victims that they are getting what they deserve until eventually they believe it. Finding different ways of making sense of abuse – perhaps years after it has happened, can be extraordinarily difficult and can require long-term therapy. For some people though, I believe that what happens, over repeated short appointments with a GP, perhaps over many years, is that new narratives are co-created, making sense of what happened in different ways.
Trauma is disempowering; a sense of self control is wrenched, often violently away. Fearfulness and disconnection add to the identity of a body out of control. In abusive relationships the victim is rendered powerless. If the victim is helped to gain a sense of (and of course, actual) control, it helps enormously.
Like all healthcare professionals, and especially those who work in deprived areas I care for the survivors of trauma every day. It helps to know as much as possible what evidence there is for recovery.
The slide above is adapted from Judith Herman and Bessel Van der Kolk. It can take years to develop enough trust with a patient to talk about trauma, during which time millions of pounds might be spent investigating and treating their physical symptoms and mental health. The costs to the NHS and other healthcare systems worldwide have never, to my knowledge been investigated. Without the opportunity to develop trusting, long-term, therapeutic relationships, many patients are denied the opportunity of recovery. Van der Kolk warns strongly against assuming that there is ‘a’ treatment for trauma, there are too many different types affecting too many people in too many different ways for one to be sufficient. Because trauma affects both body and mind, treatments that attend to both are very often required. It must also be remembered that trauma is just one of a number of contributory factors to many diseases, and we must not overlook the others, or assume that trauma alone is responsible. Autistic spectrum disorders can be mistaken for trauma because of problems with social interaction, anxiety, sensitivity to sound/ light/ touch and impaired motor coordination are common features of both.
The quality of therapeutic relationship is more important than the type of therapy, but it is almost impossible for the rational self to talk the emotional/ physical self out of its own reality, which is why CBT often fails.
Vulnerability to trauma begins before birth and is especially important during the first 2 years of life. Childhood poverty in the UK has been rising for years and is among the worst in the developed world. Programmes to ensure children get the best possible start in life- like Sure Start have been cut or scrapped. Health visitors are completely overwhelmed as are drug and alcohol services. It seems that there will probably be even more victims of trauma in the future. We need to raise awareness among professionals, the public and policy makers. We need advocacy and activism from professionals. We need a social safety net that is not so inadequate that people are forced into destitution or in which a life of intoxication is preferable to the impoverished, hopeless alternative.
Trauma informed care
Care for people who have experienced trauma needs to be based on evidence and compassion and combined with advocacy and activism
The role of the GP
GPs are not trained therapists, but the work that we do is very often therapeutic. A compassionate curiosity informed by knowledge of the ‘trauma world’ enables empathy, which is described by Leslie Jamison, author of ‘The Empathy Exams’ as, ‘asking the questions whose answers need to be told’.
Treatment begins with the sense of being listened to by someone whose intention is to understand. If the therapist (GP) can take in something of the magnitude of what has happened to the patient, internally and externally, without being totally overwhelmed by it, there is a hope once more of re-establishing a world with meaning in it.
Caroline Garland (2005)
The importance of a containment of this kind cannot be overestimated. In consultations, a therapist is required to take in overwhelming experiences without becoming overwhelmed him/ herself. Profound anxieties and hostility are part of what the trauma patient is unable to hear. The therapist needs to register and contain such feelings sufficiently if the patient is going to come to contain and integrate such feelings him /herself.
This demonstrates that the therapeutic relationship, rather than the event itself is central for the consultation. Joanne Stubley Trauma (2012)
Learning about trauma has completely transformed my practice, helping me to make sense of so much that has frustrated, worried and exhausted me for years. I am now committed to sharing the lessons with other healthcare professionals, beginning with my whole practice team – from the receptionists who frequently face hostility and unpredictable behaviour, to the secretaries who type reports full of traumatic detail, the nurses who see them for intimate examinations and the doctors who struggle with their inexplicable symptoms. Struggling with patients who have suffered trauma can inflict trauma on those whose job it is to care – both because of the intensity of experiences and because their own trauma may be triggered.
My hope is that the NHS can act with science and compassion combined with advocacy and activism to lessen the amount of trauma being inflicted and improved the care of those who have survived.
Podcast – a 40 minute interview I gave about this subject with some new thoughts, in March 2018 https://soundcloud.com/jane-mulcahy/dr-jonathan-tomlinson-law-and-justice-interview
Social determinants of health, multi-morbidity, cradle to grave care, and Sylvia who is 90 years old and spent the last decade caring for her husband with dementia and now wants me to help her join him in heaven.
Child health, mental health, sexual health, trans health and Mehmet who is only 21 years old and will not use insulin for his type 1 diabetes and is blind and dying from renal failure.
Home care and advocacy for twins, Sam and Fred who have learning difficulties, are destitute and are trying to survive.
Ever-changing targets, financial pressures, press hostility and a wonderful team and the chance to innovate.
Knowing patients for years and growing to love and respect those with whom we’ve struggled most of all.
A deep well of local knowledge and a parsimonious custodian of healthcare resources.
A growing realisation that ‘doctor’ is an inadequate description of a GP.
This is my contribution to #GP150w – a wonderful initiative by Dr Jamie Hynes
A new service has been set up in our local hospital and they have asked if they can visit our GP practice to tell us about it and they are offering us some ‘teaching’ – presumably related to their specialty.
We are going to invite them, but rather than replicate the usual format for these meetings we (I) thought we might tell them what, from our perspective, an ideal specialist service might provide.
This is a generic wish list, for any specialty. Hopefully patients, GPs, specialists, commissioners and other healthcare professionals might offer their own suggestions.
Firstly we want a website, accessible to patients and professionals for your service with all the relevant information, which should include the following:
Contact details: Travel, phone numbers for appointments, cancellations, and other queries. An email address or contact form
Links to patient-information including self-care, self-referral options, local support, help-lines, patient-forums, etc.
Links to information for carers and advocates
Up to date guidelines, and shared-decision making tools for patients and professionals
Quantitative data: how many patients are you seeing, how long are they waiting for an appointment? How long do they wait when they get there?
Your commitment to patient-centred care: How are the material, organizational and interactional aspects of your service, ‘patient centred?’
Patient and clinician feedback: It should be possible for patients and professionals to leave feedback via your website. You should analyse it and provide a monthly report including your proposed action
Quality measures. These should include:
Patient-reported outcomes and long-term follow up – we want to know how long your interventions are effective for
Safety reports: a monthly or even quarterly summary would do
Patient satisfaction surveys: Quarterly or biannually?
Staff satisfaction surveys: Once or twice a year? We want to know that we’re referring to a service that cares about its staff
I’ve tried to keep this list short. No service I know comes anywhere close to this. Patients have to trust that we will refer them to services that will take good care of them but trust is not enough.
I took Billy, my 7 year old son to the pharmacy this evening to buy him something for his hayfever. He’s been suffering constant puffy, itchy eyes and a blocked nose for the last 2 weeks. I walked and Billy scooted to our friendly, local pharmacy from where I’ve previously stocked up on dressings to treat road-rash after coming off my bike. We went inside and stood and stared with a mixture of awe and bemusement at the shelf of hayfever medicines.
Being a GP puts me at a considerable advantage in a pharmacy. I know what I want without having to ask their advice and I can confidently ignore the branding and focus on the name of the drug, the strength and the quantity to figure out which one is best value for money. Then I can show it to the pharmacist and ask them if they’ve got a cheaper version (which they often do have, tucked away behind the counter).
I always treat a trip to a pharmacy as an anthropological exertion, and deliberately hang around to watch other customers choose their medicines and listen to the pharmacists give advice to their customers. Billy and I pretend to be spies, which makes it an adventure.
The antihistamines on the shelf ranged in price from £4.50 for 7 Cetirizine tablets to £3.99 for 30. In other words, 64 pence vs 13 pence for a single 10mg tablet of the same drug – a difference of almost 500%. Boots, which is one of the biggest highstreet pharmacy chains is advertising Cetirazine at £4.29 for 14 tablets (30 pence per tablet). This is still a lot, especially when you can get 21 Loratadine for £1 in Poundland.
I prescribe antihistamines – typically 3 months supply (90 tablets) at a time, but a lot of GPs and policy makers think patients should buy antihistames, and any other medication that doesn’t require a prescription, direct from a pharmacy. Unlike most GPs and policy makers, Billy and I go to pharmacies undercover.
One thing we’ve noticed is that people often look confused and overwhelmed by the choice. Quite a few don’t ask any questions, especially if they don’t speak English or if they’re anxious or embarrassed. When my patients show me drugs they’ve bought, it confirms my suspicion that by and large, they are not making informed, value-for-money choices.
Billy and I have come to the conclusion that GPs and policy makers need to think a bit more about just how hard it is to be a successful consumer in a high-street pharmacy.
Of course it’s not just high-street pharmacies where it’s very easy to be ripped off, it’s absolutely everywhere. You can repeat the amateurish anthropology in any supermarket. Twenty minutes spent watching human behaviour in any shop is enough to teach you that there are large numbers of people – and it’s not that difficult to figure out who they are – for whom choice is not freedom, but a minefield. The cruelty of the situation is that these people are most likely to be learning disabled, cognitively impaired, illiterate, innumerate, unable to speak English, very anxious or depressed. In other words, vulnerable and sick.
The more the NHS is cut, the more patients will be expected to shop around for care and the more that happens the more the Inverse Care Law kicks in.
Last week I went to the second of 3 interdisciplinary workshops on Shame and Medicine. The first workshop was on patients’ shame, and this was on shame and healthcare professionals. In particular, it helped me think about some of the things that are making life so difficult for health professionals at present.
Shame isn’t usually experienced as shame – it is an emotional response including fear, anxiety, and a powerful urge to escape. Shame may be lived as a state of loneliness, or addiction or felt as numbness and chronic pain. It is often so profoundly physical – that people who suffer shame bewilder healthcare professionals and others with symptoms they cannot explain. These feelings can be there all the time, in the case of chronic shame, or arise acutely when something happens that threatens to set off emotions associated with past trauma. Past trauma may be abandonment, loss or abuse in early childhood, belittling or a sense of being unwanted. The trauma embeds the conviction that at some very deep and unalterable level, the person affected is to blame for what has happened. And it is the strength of this conviction, and the strength of the associated emotions that determines the degree of shame, rather than the trauma itself. This is why shame often appears to be disproportionate. This disproportionality can lead to people being ashamed of shame, asking, “but what do I have to be ashamed about?”
To experience shame is practically universal, to recognise it for what it is, is far less common. I wasn’t abused, abandoned or belittled, but I’ve experienced shame. I didn’t understand what it was until I was well into my 40s.
The shame response is triggered by a sensitivity to emotions. Sensitivity to emotions is called ’emotional empathy’ – almost everyone has it, but to different degrees. Some people have a lot more, or a lot less, than others. This sensitivity has many underlying causes. It begins before birth in our genes and in early childhood in the years before we can recall memories, as the video below shows. Having our emotional needs unmet by our parents and carers is a classic example of trauma.
As a parent of two young boys, I have come to realise that it is impossible to respond to all my children’s emotional needs. My ability to respond depends as much on my state of mind as the strength of their needs. If I am exhausted or distracted, angry or reminded of my own weaknesses by their behaviour, it is especially difficult. I’m aware of my autistic traits which can make me slow to recognise what’s going on emotionally. Parents whose own emotional needs are not being met, who are overwhelmed with their own difficulties, struggle especially to meet their children’s emotional needs. The guilt and shame of being a ‘not-good-enough’ parent makes matters worse. Now I’m worrying, especially as the older one is ‘painfully’ shy around other children, I wonder how much I have already traumatised him.
Emotional empathy is a mirroring of emotions – we feel our children’s joy or sadness, anger or anxiety, before we respond. We may respond instinctively by reflecting back joy with joy, or anger with anger. This mirroring of emotions, feeling what others feel, has been shown to occur in a specific part of the brain containing mirror neurons. If the emotions remind us at a subconscious level of similar emotions associated with past trauma, we feel them especially strongly, even before we have had a chance to think about where they come from.
Our sensitivity to emotional empathy is heightened by stress, stigma, humiliation and demoralisation, making our emotional world more intense. In highly-stressed settings emotions run high. In stressful healthcare environments, people who suffer most are those who are most sensitive to trauma. We feel panic and a desire to hide or escape or simply disappear or even cease to exist. When this happens repeatedly we try to protect ourselves by avoiding situations that threaten to trigger emotional empathy: professionals avoid patients who are mentally unwell or dying, relatives who are upset or colleagues who are stressed. We absorb ourselves in the technical aspects of care and retreat behind guidelines rather than engage in messy, uncertain processes of human interaction and shared decision making. This is why we say that, ‘shame drives disconnection’, not only from patients and colleagues, but also from our own emotions. We become afraid of how we feel. If it becomes intolerable, we may cut ourselves off from our emotions with addictive behaviour – whether its alcohol, drugs, eating, exercising or working – we bury ourselves in the addiction and live in fear that if we give it up, we won’t be able to cope with how we feel. The toxic effects of stress are why austerity so undermines compassionate, empathic care.
Another way of understanding the intensity of affective empathy comes comparing shame and pain. In the video below, Lorimer Morlely explains how two identical pain sensations – a light scratch on his ankle, are interpreted completely differently in the light of prior experiences, leading to one scratch being incomparably more painful than the other. Emotions are like pain – the intensity depends on which prior emotions are triggered.
Healthcare is emotional labour. It is never simply an objective clinician-scientist treating diseases with technology, but all care that involves people communicating with one another, is psychodynamic, emotional labour.
Defences against emotional intensity, empathy and shame can operate at institutional as well as individual levels. In 1959, Isabel Menzies Lyth showed how an NHS hospital, faced with a nursing service in which nurses and trainees were overwhelmed with anxiety and stress, developed social defences against anxiety. Having noticed that students and junior nurses were becoming emotionally involved with patients, nursing managers broke up their work into technical tasks and required them to run every decision past their seniors. The result was that everybody – students, juniors, seniors and managers became more anxious. Lyth’s lesson, emphasised repeatedly in the literature on anxiety and shame, is that defences against emotional engagement are counterproductive. Satisfying healthcare is emotionally engaging. Emotionally disengaged healthcare is demoralising and dehumanising for patients and staff.
Emotional labour is hard work, but defences against emotions are harder and more damaging in the long run. We need to be constantly vigilant for situations that threaten to trigger emotions. The hypervigilance makes us tense, suspicious, anxious, tired but unable to sleep. You avoid social situations and become isolated and lonely.
What can we do?
Making sense of emotional empathy requires cognitive empathy, which may also be called ’emotional intelligence’. It is necessary to make sense of the emotional world of others and oneself. It is less innate and more amenable to educational and psychotherapeutic interventions. In my experience of teaching doctors and medical students, cognitive empathy varies enormously, some people have a huge amount and some have very little. It is difficult for people with autistic traits and may be difficult for people with a lot of shame because of the knowledge that making sense of emotions means revisiting past trauma.
People who choose to become healthcare professionals often say that they want to help people. We rarely ever ask them where that desire comes from. We could ask, but dare not, “What formative experiences led you to believe that you would be good at caring?” “What experiences did you have, of caring for others or yourself?” “Did a lack of affection lead you to discover that some of your own emotional needs could be met by focussing attention on others?” “Did your familiarity with and proven ability to survive trauma make you think you had something to offer others?”
I have met many medical students and trainees who have a lot of trauma in their past. Some of them, whose wounds are far from healed, burn out very quickly. In traditional cultures, you couldn’t become a healer until you had to undergone rituals and ceremonies that included deliberate poisoning or wounding. Healers had to know what it was to suffer. In a modern medical education, we also inflict suffering – stress, humiliation and shame but with none of the conscious intent of a traditional healer’s training. Medical education is not simply blind to empathy, trauma and shame, but is deeply ingrained with defences against them and there are cultural hostilities against reflection.
The doctors and students that I have met who have the greatest affective and cognitive empathy are those who are aware of their wounds and have been able to spend time coming to terms with them, with, or without support.
Healthcare is not just about clinician-scientists applying technology to treat disease. It is also people caring for people, it is emotional labour. We need to nurture affective empathy and take down our counterproductive defences. We need to teach cognitive empathy, not as a course to satisfy a minority interest, but as an integrated part of clinical medicine, by asking emotionally intelligent questions about the experiences of care and caregiving. We need wounded healers and we need to care for our wounded healers – we need emotionally intelligent medical education and we need to put intelligent kindness at the heart of healthcare.
It was some time in November. I’d come in to the GP surgery for the second time that week to collect my prescription for my blood pressure medication. It was really busy and I don’t really like being around other people so I was getting quite anxious and I could feel my blood pressure going up while I was waiting, so when I got to the desk I was quite agitated. I’ve always had an anger problem, I’ve lost count of how many times I got thrown out of school or lost a job because of losing it. I basically cope by keeping myself to myself. I’ve got a few friends who know what I’m like and I’m grateful for that. Anyway, when I got to the desk they couldn’t find the prescription – again. I totally lost it, it was so embarrassing, they threatened to call security, but by that time I’d already left. I’d been without my medication for over a week by then, but I wasn’t going back there, no way. It was about 3 weeks later I suddenly couldn’t balance properly, like vertigo, I had to hold onto the walls to keep myself upright. I didn’t know what it was, but I didn’t want to call the doctor so I waited to see if it would get better. If anything it was getting worse and I was getting headaches and feeling sick, so eventually I did. It turned out I had a stroke. Because of my blood pressure.
It had been one the worst days of my life. I’d been getting bullied at work for a while, teasing mostly, but it was getting on top of me. I’d had to get up and leave a meeting 3 times in an hour and a half that afternoon, and they didn’t even try to hide their sighs when I came back. My girlfriend had been on at me to see my GP for about 2 years, but the last time, about 5 years ago had been a disaster. Basically, as soon as my bladder is even half full I need to go to the loo. I can’t wait, I can’t hold it in. Never have, for as long as I can remember. That day after work, I was on the tube on the way home when I suddenly needed to go. It was packed, and we were stuck between stations. I was terrified, sweating, wishing, like Dorothy in the Wizard of Oz that I could just be somewhere else – preferably in the bathroom at home – Instead I felt the dreaded hot, wet patch go down the inside of my right leg. I looked down trying to avoid seeing the other passengers frowning and trying to work out where the smell was coming from. I wanted to make myself invisible, but, instead, to make it worse I started crying. When I got home my girlfriend, gave me an ultimatum, either I go to the GP, or she goes there for me. The last time I went, though, five years ago – they just didn’t take it seriously. I’d used Ketamine a couple of times as a student and they fixated on that and basically said there was nothing they could do. I tried telling them it had always been a problem, but they didn’t want to listen.
Doug was my patient. His blood pressure frightened me a lot more than it appeared to bother him. Typically around 220/130, no amount of medication made the slighted difference. He was always jolly, came to all his appointments and would say he didn’t know why I was so worried. It never occurred to me that he wasn’t taking his medication. Eventually, when he was on 5 different blood pressure pills a day, I called the local hypertension specialist. Immediately she said, “He’s not taking his medication. You need to bring him in and ask him to take it in front of you and then check the blood pressure every couple of hours.” It seemed so obvious, I felt stupid for not having thought of it, so I called Doug and asked him to skip his medication next Tuesday morning, but bring it all in to see me at 8am. Dutifully he came in and laid the boxes out between us. I had a glass of water on the desk ready for him. “OK, I said,” feeling quite pleased with myself. “Now I’d like you to take the meds, just like you do every morning. “What? Are you trying to kill me?!” He asked. “No, I’m just asking you to do what you do every day at home”, I replied. “Er, yeah, right, OK”, he said. And took the tablets. At this point I should have stopped him. I should have said, “wait, it’s OK. I don’t want to kill you. I just want us to figure out how to deal better with your blood pressure. We can talk about the medication if you like, or anything else that’s on your mind. If you’re not taking it like this every day, then let me know and we’ll try to work with that”
But I didn’t. I wanted to humiliate him, and I succeeded. He did come back every couple of hours to get his blood pressure checked. At the last check in the afternoon it was 80/55. He never came back to see me again, and has since left the practice.
I’m haunted by this failure, and include it to show that all of us who work in healthcare are confronted by vulnerable people and are in positions of great power, to pass judgement on the needs of those who come to us for help. The slightest lack of sensitivity can stay with someone for years, stopping them from asking for help when they really need it. It is especially true with problems that are embarrassing and stigmatised, like mental health, continence and obesity. The media rages against people who waste NHS time and resources, but say nothing about those who need our help, but do not come. I hear stories like those above, every week, sometimes every day. Because they are so embarrassing they are very rarely told in public. I’ve changed a lot of details to protect my patients’ identity, and I hope that this might help others tell their story to a doctor or nurse who needs to hear it.
(Notes for my lecture to the North and East London GP Educators’ conference)
At my last appraisal, I was criticised for not having more clinical conditions in my CPD (Continuing Professional Development) – “where” my appraiser asked, “was kidney disease, asthma, Diabetes, and Heart Failure?” I couldn’t think of an answer, it wasn’t that I was short of CPD, it’s just that my learning needs, the things I struggled with most as a GP were my difficulties in trying to help people with chronic pain, anxiety and depression, loneliness, severe obesity, shame, self-loathing and self-harm – the consequences of deprivation and adverse childhood experiences. It wasn’t that they weren’t also suffering from heart and lung disease and the rest – they were, to a huge extent, it’s just that managing these diseases wasn’t half as challenging as the rest. And most of the time it didn’t seem to be the cause of my patients’ greatest suffering.
It was several months later that I watched a presentation by Professor Graham Watt from Glasgow University General Practice at the Deep End in which he explained that GPs working in practices serving the most disadvantaged patients have our own CPD needs. It was at this point that I realised that there is no curriculum for General Practice in deprived areas. As a GP registrar, I went on a ‘mountain medicine’ course, but I have never been on, or even seen a course called, ‘poverty medicine’. There are conferences dedicated to medicine for the homeless, and others centred around specific needs, such as addiction, but in poverty medicine addiction comes with depression, Hepatitis C, lung-cancer and COPD and frequent disruptions in care due to prison sentences.
David Hilfiker [an American GP from urban Minnesota, quoted in Arthur Frank’s wonderful book, The Renewal of Generosity] believes that the medical profession has lost its own moral ground with its deprecation of his work, which he calls “poverty medicine” …
There is no [medical school] curriculum for poverty medicine: no one teaches “The Art of Medical Decision Making With Limited Funds” or “Medical Compromise with Cultural Strictures”. Medical practice in a community of poor people often seems a solitary specialty without research, common cause, or shared-experience.
For Hilfiker, demoralisation in poverty medicine is the daily need for “almost indecent compromise of professional standards.”
“When you [as a doctor] are so poor that you cannot afford to refuse eighteenpence from a man who is too poor to pay you any more, it is useless to tell him that what he or his sick child needs is not medicine, but more leisure, better clothes, better food and a better drained and ventilated house. It is kinder to give him a bottle of something almost as cheap as water and tell him to come again with another eighteenpence if it does not cure him.”
And which of us here today has not prescribed Sertraline or Pregabalin in similar circumstances?
“When you have done that over-and-over again every day for a week, how much scientific conscience have you left? A doctor’s character can no more stand out against such conditions as the lungs of his patients can stand out against bad ventilation. The only way in which he can preserve his self-respect is by forgetting all he ever learnt of science, and clinging to such help as he can give without cost merely by being less ignorant and more accustomed to sickbeds than his patients.” “Finally,” says Shaw, “The doctor acquires the skills of caring for patients under poverty-stricken conditions”
The curriculum that is notable by its absence is not hidden, but ‘null’ or ‘silent’. Is it only acquired with experience or could we, as trainers and educators help devise one? What would be on such a curriculum and how should it be taught?
How to promote and maintain therapeutic optimism when working in areas of high deprivation
How to address low patient engagement in health care and increase health literacy
How to use EBM effectively when working with patients with high levels of multimorbidity and social complexity
One criticism GPs at the Deep End have had about the project is that it has had little impact on their day to day practice. This is something I would like to address today, by focussing on how the relationships between doctors and patients are affected in Poverty Medicine and what we can do to strengthen them.
Poverty medicine is emotional labour.
Sandra is severely obese and suffers from Type 2 diabetes, Asthma, COPD, eczema, diverticulitis, chronic back pain, chronic depression and severe, generalised anxiety and panic attacks. She rarely leaves her house, frequently fails to attend routine reviews and calls the surgery or out of hours service in times of crisis. She is prescribed insulin and another 10 daily medications, not including topical treatments. When she does come in she presents with pain (which I cannot diagnose), insomnia (which I cannot treat) or distress due to problems like abusive neighbours or a forthcoming benefits assessment (over which I feel I have little influence). It’s almost impossible to get on top of her dreadfully high blood sugars, her desperately under-treated COPD or her persistent psychology appointment DNAs.
Poverty medicine is emotional labour. We should be under no illusions about this. Patients like Sandra might be described in less deprived areas as occasional ‘heartsinks’ but where I work, patients like Sandra are our stock in trade. When my new registrar started at the beginning of February, she watched a surgery with me where 15/20 patients had a history of childhood sexual abuse, domestic violence or torture. Research from the General Practice at the Deep End project – a network of 100 of the most deprived GP practices in Glasgow showed GPs were having to manage more complex multimorbidity, with over twice the rate of mental health and social problems, in a greater proportion of their patients, who attended more frequently, at a younger age than patients in less deprived practices, with no more time, money or human resources, without specialist training or support.
We need to be honest with ourselves and our trainees about the personal impact of working with patients like this under these conditions. I recently ran a session for about 30 Hackney VTS trainees and one thing they wanted me to pass on was for us to be honest about how stressed and anxious our work makes us feel. The majority of them said they wouldn’t tell their trainer how anxious or stressed they felt themselves. Every 3rd Sunday for the last 17 years, since I was a GP trainee myself, I have met with Mel Sayer (who is here today) and a small group of other GPs for a study group session lasting 3 hours, including dinner. Undoubtedly, it is because of the support we get from the group, that we are able to be here today.
Therapeutic nihilism is a consequence of hopelessness in the face of chronic pain, chronic anxiety, loneliness, and complex social issues. Low levels of patient engagement in health promotion and chronic disease management, frequent DNAs and presentations in crisis make matters worse. Therapeutic nihilism It is highly prevalent among GPs in deprived areas and trainees pick up on this. I remember my own naïve therapeutic optimism as a trainee, eager to try new drugs for chronic pain and keen to refer patients with chronic anxiety for EMDR. Therapeutic realism takes time. I’ve given a workshop recently, inspired by Mel Sayer, about doctors and their favourite patients. The longer doctors have known their patients, the more likely they are to be people whose problems have seemed intractable, with whom relations have been difficult. For trainees and younger doctors, favourite patients are those who’s problems they can solve, who are grateful and articulate. Therapeutic realism comes from respect, from doctors ‘standing in awe at the burden the poor have to carry, rather than in judgement at the way they carry it’.
So lesson 1: Poverty medicine is emotional labour
We should let our trainees know that the patients that challenge them most to begin with, might become their favourites, given time and continuity, but feelings of hopelessness and frustration are normal. Being professionally connected to your peers is essential, find or set up a study group and meet regularly.
Medical students are bought up in a culture where questions have a single-best-answer. Junior doctors and GPs work in a culture full of guidelines and protocols. This gives arise to cognitive dissonance because the impression this creates is that there are much clearer relationships between causes and effects than there are in practice. Teaching the difference between complex and complicated can help us cope with this dissonance.
A racing car may be incredibly complicated, but if you can find out which parts need fixing, you can get it running again. Different specialists can focus on the tyres, engine, electronics and so on. We like to imagine people are like racing cars, but they are not, they are complex. My dad is complex. He has cerebrovascular disease and Alzheimer’s, Type 2 diabetes, hypertension, prostate cancer and ischaemic heart disease. Some days he is barely conscious; he cannot eat or drink or get out of bed. We don’t know why this happens. We don’t know when that happens, if he will never wake up again, or whether he’ll be up and smiling the next day, as he is in this picture. One thing that made a difference was stopping all his medication apart from the ones that help him pee. There was nothing sedative in his cocktail of 6 different pills. The medications were stopped 6 months ago. His condition was so poor then, that we thought, even hoped that it might bring his suffering to an end a little quicker with another stroke or a heart attack. But now he’s brighter and happier, and we don’t know how long he might live.
Sandra who I mentioned at the beginning is 25 years younger than my dad. She has 8 different medical conditions. Patients in the most deprived areas typically have the burden of multimorbidity of patients 10-15 years older in the least deprived areas. Sandra is prescribed a total of 16 different medications. She gets a lot of side effects, many of which aren’t mentioned by the BNF. Often she chooses what to take and what to omit based on her symptoms. She owns few clothes that fit her and even fewer that she feels comfortable wearing. She has refused home visits or even to be taken to hospital by ambulance with an exacerbation of COPD because she was too ashamed of her appearance. One of the most effective therapeutic interventions we’ve managed recently was a befriending service. You might reasonably wonder how I’ve defined effective. Well, what I’ve noticed is that when I visit, her skin looks a lot better. Because of the regular visits from the befriender, she’s washing more and using more of her creams for her eczema.
So lesson 2: Medicine is complex, and poverty medicine especially so.
So far, I’ve talked about the problems – Poverty medicine is emotional labour and it’s complex. Doctors, especially stressed, overworked doctors working in deprived areas know this, even if they call it by other names. They want to know what to do about it. It’s easy to suffer from therapeutic nihilism when patients want to discuss chronic pain, chronic anxiety and loneliness and you want to do something about their disastrous glycaemic control.
One thing that has helped me enormously, is by getting a better understanding of patients’ perspectives by reading their narratives. Very often these are written to let us know things they wanted to say, but couldn’t tell us face to face.
Lesson 3: Patient narratives can guide us
I am sure that Julian Tudor Hart wrote this, but cannot find where it was. Very often I find myself having medical discussions with patients and wondering what whether there isn’t something else we would both rather be talking about. Sometimes I have these discussions time and again for years before the ‘real issues’ come out. Trust sometimes takes a very long time to develop.
I teach 2nd year medical students listening skills. By this I mean awareness of how patients’ narratives are created by a dialogic relationship that they have with them. I spend an hour at a time with one patient and 4 students, we watch each-other and take notes about how narratives develop. In their reflective writing about the course, students – almost without exception write about how much they learn from patients.
Patients have been writing narratives about suffering illness and receiving care for hundreds of years, and there is a contemporary explosion due to social media. There is a long history of doctors writing, ‘Lessons from the Other Side’ to warn their colleagues that you can complete a medical education and a lifetime in practice and still know almost nothing of what it’s like to be a patient. The British Medical Journal has had an exceptional series of articles called ‘what your patient is thinking’ including the latest one about what it feels like to be an interesting teaching opportunity. Everyone involved in medical education should read this. The first article in the BMJ series was about what it feels like to be a fat patient.
The huge spectrum of responses from clinicians, ranging from fierce criticism to deep sympathy is itself very useful teaching material. Not long before that was published I had published a long, referenced blog called, ‘Doctors, patients and obesity’ exploring what doctors feel when they’re trying to help obese patients. I had written it to help work through my own frustration. I simply didn’t know what to do or how to respond to severely obese patients. I remember discovering how frequently severely obese patients had been sexually abused *ref*. I followed this blog up with essays about how doctors feel about chronic pain, chronic anxiety and lonely patients. All of them were informed by qualitative research and narratives written by patients about how they were treated by doctors. These patient narratives were written, for the most part, not to complain about care, but to help doctors to be more understanding and more compassionate. What patients wanted, but too rarely got, was understanding. One example published this year was ‘A letter to my doctor from a victim of sexual abuse’ in it the author writes,
As a medical professional, you have taken an oath to do no harm, but there are ways in which you can hurt your patients without even recognizing you are doing so. What seems to you as a simple exam may cause injury to those who have been victimized by someone’s touch. This is a subject that we, survivors of sexual violence, have been meaning to discuss with you for some time now, but your authority can be more intimidating than you may know. I am also unsure if you are aware just how much power you, as a physician, hold and to the extent that you affect the lives of all of your patients. Your interactions with us travel much deeper than the physical core.
The young woman who wrote about what it was like to be an interesting teaching opportunity also wanted to emphasise power and powerlessness,
I was asked if some student doctors could observe as they had never seen a chest drain being put in place before. I didn’t feel like I could say no. My situation was being described as ‘a great teaching opportunity’ and was being greeted with a sort of excitement that made me feel uncomfortable. I was starting to feel like the main attraction at some sort of freak show.
One about polypharmacy concluded,
Supportive health professionals, who listen to us and treat us as individuals, are invaluable to people with complicated medical lives. We encounter them far too infrequently. My hope is that clinicians will pay more attention to the complications found in patients’ lives and this will improve outcomes for us all.
I would, of course, say that the right word here is complex, rather than complicated.
So lesson 3: is read, share and discuss patient narratives.
What almost every patient narrative is at pains to emphasise is, “Doctor, I want you to understand what it’s like being me and to know that what you say, the way you behave, and what you do, makes me feel like this.” When Daniel Offri interviewed Oliver Sachs recently she asked him, “Are your patients just much more interesting than the ones we see, do you simply pay more attention to their stories?” Of course, it’s by paying attention to stories that patients become more interesting.
Lesson 4: Adverse Childhood Experiences are fundamental
If patient narratives help us make sense of individual experiences, then understanding the effects of Adverse Childhood Experiences helps us make sense of the burden on communities. In the last few months there have been several papers published about the impact of Adverse Childhood experiences, (ACEs) on the future risks of illness and adversity.
The researchers followed up an incredible 95% of the cohort and showed that by 3 years they were able to identify with 80% accuracy those children who were most likely and least likely to be high or low cost in adulthood. High costs were calculated by looking at receipt of welfare, rates of smoking, obesity, hospital stays, prescriptions and criminal convictions. A retrospective study in Wales, published in the Lancet last year showed that 3 or 4 adverse childhood experiences in childhood was associated with a 3 times increased risk of heart disease and respiratory disease and a 4 times increased risk of Type 2 diabetes. Research looking at the effects of deprivation alone, has shown that most deprived 10% of the population have a life expectancy and burden of disease of people 15-20 years older in the least deprived centile and their lifetime healthcare costs exceed the savings incurred by their premature mortality by nearly £5bn.
Part of the frustration that I used to feel with my patients was a reflection of how hopeless and frustrated they felt and a conviction that they ought to be able to do more for their health. I hadn’t appreciated just how much the die was loaded against them at such an early age. Exceptions don’t change the burden of risk any more than someone who smoked all her life without consequences proves that cigarettes aren’t harmful. The burden of adversity in early childhood is associated with far higher rates of harmful behaviour like smoking, alcohol abuse and risky sexual behaviour. An understanding why people behave they way they do is incomplete without knowledge of their experiences right at the beginning of their life.
So lesson 4: Adverse childhood experiences cause lifelong biological damage predisposing to a wide range of diseases above and beyond the psychological harms. They contribute to vicious circles of poverty, unhealthy behaviors and ill-health.
The ACE research is at its strongest on demonstrating correlations but is less satisfying at explaining causal factors. Evidence about the long-term effects of stress on neuro-endocrine, cardiovascular and epigenetic systems helps to explain future risks of disease but doesn’t do much to help GPs cope with their primary concern, the patient in front of them. Not everyone who experienced adversity in childhood suffers lifelong harm, but those that do, very often share the psychological and behaviour scars of trauma. Trauma is commonly understood in terms of traumatic experiences or events, such as child abuse or abandonment, domestic violence or even a lack of parental affection because parents were too ill or preoccupied themselves. What has really helped me is the work of Daneila Sieff, who defines trauma in terms of its effects, a ‘trauma world’ that sufferers live in. The trauma world is made up of three areas; fearfulness, shame and disconnection. When I read Sieff’s work and listened to her lecture, it perfectly captured my experience of caring for my most difficult patients. The foundations of a trauma world lie in adverse childhood experiences in which there may be abuse, abandonment or serious lack of affection. When I asked Sandra about this she told me that her parents were in their 40s when she was born, they made it clear to her from an early age, that she was a mistake and so it was mostly down to her sister, who was only 12 when she was born, to bring her up. At 18, her sister died in an accident and the family feel apart, unable to cope with the grief, and she was taken into care.
Fearfulness arises from a fear that the emotions associated with the original trauma will be triggered again. Patients are not usually conscious of the connection and so experience a generalised anxiety about themselves and the world around them. In their relations with us, and other medical professionals they present with the full breadth of anxiety disorders from social phobia to panic attacks and OCD. One consequence of being severely anxious is a tendency to interpret ambiguous social cues negatively, so that sufferers appear highly sensitive, touchy, irritable and hard to engage with, leading to alienation, isolation and loneliness. Because anxiety is so profoundly physical, medically unexplained symptoms are very common. Because deprivation is linked to the burden of disease and multimorbidity, symptoms are very hard for clinicians to ascribe to anxiety on a complex background of vascular, endocrine and neurological disease. And so we too become anxious and stressed.
The second part of the trauma world is shame. Shame is the conviction that what has happened to you and the way you behave is fundamentally because you are a bad person. James Rhodes, whose book, Instrumental is about surviving childhood sexual abuse and finding relief in playing the piano, said,
Shame is the legacy of all abuse. It is the one thing guaranteed to keep us in the dark, and it is the one thing vital to understand if you want to get why abuse victims are so fucked up.
Something you’re embarrassed about makes an entertaining story once you’ve loosened up with a couple of pints, but something you’re ashamed of you do everything you can to hide from others. Patients who feel ashamed avoid eye contact with doctors and fail to attend appointment if they think that they might be humiliated. One of the first pieces of qualitative research I read was Joe Kai’s work in the 1990s on the experiences of mothers bringing sick children to see their GP. They were ordinary mums, a social cross-spectrum. They reported being made to feel foolish for either bringing their children when they weren’t sick enough to warrant the doctor’s attention or leaving it too late and behaving neglectfully. What this, and other similar research has shown is that doctors, consciously or not, so far as patients are concerned, make moral as well as clinical judgements.
The third part of the trauma world is disconnection. Disconnection is the desire to blot out painful memories and emotions. Addiction to drugs that do this, like alcohol, opiates, sleeping tablets and other sedatives is worryingly common. Chronic pain is frequently associated with adverse childhood experiences so doctors prescribe to treat the pain, but the drugs we use – like Pregabalin, Amitriptyline and Codeine are non-selective and numb painful memories as well as back pain. When I met with our local pain clinic director to discuss his clinical approach, he said that he believed in using polypharmacy to block all the pain receptors. I’m not sure that he was talking about the pain of trauma. In a report on anxiety from the Mental Health Foundation it was reported that the second most frequent way that people coped with chronic anxiety was by comfort eating. The US research on Adverse Childhood Experiences began by discovering the strong links between severe obesity and childhood sexual abuse. At first these findings were rejected out of hand by professionals who thought that these were merely patients’ excuses. These attitudes persist today. Sublimation may take other forms of behaviour like burying oneself in work, exercise or shopping, which whilst clearly not diagnostic of a trauma world, might raise suspicions.
So lesson 5 is understanding the trauma world can help us to make sense of the overwhelming anxiety, shame and desire for disconnection that our patients suffer.
Lesson 6: Empathy can be taught
The narratives of patients who have written about their experiences of trauma, in order to teach doctors what it’s like, but were too afraid to tell them to their face – share the message that empathy matters, a lot. Empathy is cognitive – the ability to make sense of another person’s perspective and experiences, – and affective – the ability to be emotionally moved by this.
I’m not sure if you can teach someone to feel, but I am convinced that you can teach people to explore and understand other people’s lives. While not every patient will need this, or even welcome it, for best-selling author and Ted Talk celebrity, Brene Brown, empathy is the way we should respond to shame.
For part-time simulated patient in medical student exams, Leslie Jamison, “empathy is asking the questions whose answers need to be told.” Sympathy is a response, “Oh, not, I’m so sorry, that’s awful”. Empathy is a question that shows that actually you have an idea what it’s like, however alien that experience might be. Understanding the role of adverse childhood experiences and trauma offers a framework to guide dialogue.
Empathy demonstrates to patients that they are not alone and that it is possible to make sense of their experiences and that doctors can appreciate what it’s like.
A complimentary perspective about patient’s difficulties in deprived areas, comes from studies of violent behaviour in Scotland. Policeman John Cornachan spent years trying and succeeding to reduce violence between young men in Glasgow. Violence for these men was recreation and whether they ended up in police custody, an A&E department or neither was down to a combination of luck and fighting skills. Violence was recreation for men who hadn’t learned the essential skills of social interaction by other means.
The problems identified by employers weren’t poor numeracy and literacy as we had expected, but, in order of importance: planning and organising, customer handling, problem solving, team working and oral communication. These are skills that are learned and developed in the first five years of life.
Health literacy is a big deal in Poverty Medicine, but while I wouldn’t deny that it is a serious problem, the chaotic lives and serious problems that many of my patients have coping with the bureaucracy of modern healthcare is at least as serious and we could do a lot to make things easier. An over-emphasis on literacy and numeracy means potentially overlooking the need to simplify the ways we provide access to and deliver healthcare.
So lesson 6 is that empathy can be taught – it is created through an active dialogue with patients and is grounded in an understanding of the experiences of deprivation and illness
Lesson 7: Continuity matters
There is a risk that a lecture on poverty medicine deals too little in opportunities. Not every child who has suffered adversity grows up with problems like those I’ve discussed, in many studies, around 30% seen to do OK. Factors that provide resilience include finding meaning and purpose, being able to make sense of experiences and developing a long-term relationship with an emotionally stable adult.
Hilfiker, the Minnesota doctor I quoted earlier understands that a considerable part of his value to his patients is symbolic.
A doctor is more than a set of skills. A doctor is a status, and the presence of that status conveys social inclusion; patients attended by a doctor have not been abandoned.
So lesson 7 is that continuity matters. There’s evidence to show it makes medicine safer, more efficient and more compassionate. And it goes further to promote resilience and inclusivity.
There is a lot more that I could have said and a lot more that GPs could do and trainers could teach. I have another lecture on advocacy for example. But what I wanted to focus on was the experience of being a GP in a deprived community, 8 lessons that I have learned in nearly 20 years of being a full-time GP, that might make up part of a curriculum for poverty medicine and shared with trainees much sooner. The overarching message is that doctors and patients are in it together – what both patients and doctors need is resilience. Harry Burns’ inspiring lecture on inequalities and resilience reminded me of the importance of ‘Salutogenesis’ – the factors that needed to thrive and be healthy, not simply avoid disease and suffering. Antonovsky’s research that showed that to thrive in and after adversity, the social and physical environment must be comprehensible, manageable and meaningful. These lessons have made poverty medicine more comprehensible, meaningful and manageable for me, and I like to think, at least some of my patients, and I hope, some of you too.
I spent this morning hearing my second year medical students read and discuss their reflective essays, all of whom described how much they had learned from patients while not one wrote about anything they had learned from me. I counted it as a successful few weeks of patient centered medical education. The following blog is a great example of ways in which they might, I hope, carry their experiences through the rest of their careers.
For some background to patient-centred medical education, this paper is one of the best I have read, especially the points about role-modelling being something that medical students and trainees can do in relation to patients, rather than by mirroring other doctors http://ltc-ead.nutes.ufrj.br/constructore/objetos/Students%20Learning%20from%20Patients%20Let%92s%20Get%20Real%20in%20Medical%20Education.pdf
You may gather from the title of the blog that the condition my daughter is diagnosed with is not that common. There are about 500 people with Emanuel Syndrome (I’m going to refer to it as ES from now on) in the World, in Sept 2015 when I first did the (crude, non statistical) sums that meant 1 in 14 million people worldwide with ES.
One of the challenges that the rarity of ES brings is there there are very few Doctors, Speech and Language Therapists, Physios or Teachers who have ever encountered it. Those who have can have usually met very few. When I meet professionals at Lucy’s appointments their approach varies. In my experience as a parent and formerly as a healthcare professional I think there are key things that help when dealing with something new and rare that help to get the best support in place for…
The NHS is the greatest expression of social solidarity anywhere in the world: it is not just that we stand together but what we stand for. For fairness, empathy and compassion. It is for these reasons that we all care so deeply about its future.
There is no [medical school] curriculum for poverty medicine: no one teaches “The Art of Medical Decision Making With Limited Funds” or “Medical Compromise with Cultural Strictures”. Medical practice in a community of poor people often seems a solitary specialty without research, common cause, or shared-experience. I and my few partners are isolated professionally, with no way to even to assess our own record … As a physician for the poor, I know there will be no “professional advancement” The bottom rung of the ladder is the same as the top rung: working as a clinic doctor, seeing patients day-to-day.
David Hilfiker, Quoted in The Renewal of generosity by Arthur Frank
Last year Ali got a job, his first in a decade. His life had new meaning and purpose. His social circle expanded, he started taking care of himself, stopped drinking alcohol and started eating better. He lost weight and his diabetes improved dramatically. He was able to safely stop two diabetic medications and one for blood pressure. He felt much happier. He stopped abusing his wife, Maryam. Maryam’s chronic pain and generalised anxiety lifted. She stopped going to the pain clinic and stopped seeing her psychologist. She stopped two regular painkillers, and halved the dose of her antidepressant. She felt a lot better. She started paying a more attention to her children. She started visiting her son, Mehmet, her son, who is unfortunately still in prison for gang-related violence – but he is due out next year. Ayse, her daughter is 17. She is living in a hostel, having been thrown out of the family home after getting pregnant last year. Her dad won’t talk to her yet, but Maryam has started meeting with her without his knowledge. The social impact of getting a job is profound, but in the context of a vulnerable life lived in an age of austerity, is also partial and provisional.
There is a popular school of thought that says it’s impossible to understand what it is like to be someone else; a patient, if you’re a doctor for example, or a muslim woman if you’re a white man, or a single mum on a Glasgow estate if you’re a stockbroker in Surrey. I subscribe to a school which believes that empathy is not some fluffy disposition, but is something that comes with the hard work and emotional labour that goes into trying to understand and appreciate the lives of others. This school advocates reading fiction and literary criticism, spending years getting to know patients, and other people who are not like us, and listening to more experienced colleagues like Scotland’s recently retired chief medical officer, Sir Harry Burns – his TED Talk is at the end of this blog.
Understanding the lives of vulnerable people
If we are unable to understand the lives of vulnerable people, we will never appreciate why we need the NHS, and in particular why primary care and continuity of care are so important. Vulnerability is an almost entirely preventable cause of ill health and premature death, of greater significance in terms of risk to health, than smoking, obesity, alcoholism or drug abuse. The amount of vulnerability (chiefly due to deprivation) influences not just the amount of illness people suffer from, but the types of illnesses and the age at which they experience them. People in the most deprived communities suffer more disabling ill-health, more mental ill-health and more social ill-health (like loneliness which is more harmful than smoking or obesity) and do so 10-15 years earlier, than people in the least deprived communities. Problems are compounded by low literacy and numeracy. Even though they die up to 20 years earlier than people in the wealthiest communities, the most disadvantaged still spend more years in ill-health than those wealthier people who live longer (The Costs of Inequality). The consequence of this is that costs saved by early mortality are exceeded by the costs of illness during their shorter, sicker lifetimes. It has been recently estimated that up to £4.8bn could be saved to the NHS if the poorest had the same health and life expectancy as the wealthiest.
Interactions with GPs and other healthcare professionals are characterised by frequent, complex consultations with multiple problems, a shortage of time, low expectations, lower enablement, poor health literacy and practitioner distress (Watt). Consultations where I work are further complicated by language barriers, intoxication, somatisation and social needs. Health services in deprived communities receive no more funding than the wealthiest areas, despite the massive differences in need. This is why Professor Graham Watt from Glasgow’s Deep End GP project says the Inverse Care Law is,
the result of policies that restrict access to effective needs-based care. It mainly effects patients of low socioeconomic status with multimorbidity, who have a mix of physical, psychosocial, and social problems, and consequently need time, empathy and a holistic patient-centred approach to care.
What does it mean to be vulnerable?
A study published in in the Nursing Times in 2008 looked at a service to support vulnerable pregnant women. Of the women surveyed,
● Over half (58%) had injected drugs; ● Just over half (52%) had never worked; ● Nearly one-fifth (18%) were homeless; ● Just over one-fifth (21%) had been in prison; ● Nearly one-third (30%) had outstanding court cases; ● Two-thirds (66%) lived with a partner; ● Just under half (46%) lived with other substance misusers; ● Nearly two-thirds (62%) lived with dependent children; ● The majority (80%) were abuse survivors.
These women may appear to represent a particularly severe end of the vulnerability spectrum, but several interesting things stand out. For one, vulnerability is complex, involving material, social, physical and psychological factors. Secondly, adverse experiences in early life predispose to lifelong vulnerability. Thirdly, vulnerability predisposes to vicious cycles of cause and effect – abuse and deprivation increases the risks of getting involved in drugs and crime, which lead to imprisonment and unemployment, leading to deprivation and so on. Fourthly, vulnerable people are usually surrounded by other vulnerable people, including children who will themselves be and quite likely become, vulnerable. And finally, that coping with vulnerability is very hard, and so along with vulnerability must come resilience.
Deprivation is one of the main causes of vulnerability. To be deprived of money, housing, employment, education, health, social contacts and liberty are undoubtably causes of vulnerability, but vulnerability also includes intrinsic factors like race and gender, and physical and intellectual capacity. Some people are born vulnerable. This ‘resilience matrix‘ for children shows how intrinsic qualities and environmental factors affect vulnerability and resilience.
Vulnerability and resilience aren’t necessarily different poles apart on a spectrum. There are different conceptual relationships between vulnerability, resilience and adaptive capacity included in this brief presentation, and illustrated below.
Although this relates to community resilience after natural disaster, it is just as relevant to the health and wellbeing of individuals and communities faced with poor housing, high rents, few jobs, poor schools, high levels of violence, drugs and alcohol, cheap junk food and a lack of cooking skills or facilities, high levels of pollution and high levels of mental ill-health. The presentation from which graphic above is taken goes on to list the components of vulnerability as,
Exposure: The degree, duration and/or extent to which the person/ community is in contact with or subject to stressors (like material poverty, abuse, neglect, stigma, unemployment, incarceration, intoxicants, pollution, poor diet etc)
Sensitivity: The degree to which they are affected by exposure to these stresses
Adaptive capacity: Their ability to adjust, moderate damage, take advantage of opportunities and cope with changes bought about by these stresses
These different conceptions of vulnerability, resilience and adaptive capacity help situate vulnerability in social contexts. They also help us recognise that vulnerable people don’t just need protection, but also enablement and empowerment.
Resilience and empowerment
Harry Burns, recently retired Chief Medical Officer for Scotland, quotes Aaron Antonovsky in a couple of wonderful lectures linked at the end of this blog. Antonovsky is known for his conception of salutogenesis. He studied survivors of Nazi concentration camps, and the 30% who appeared to be most resilient had in common,
a sense of coherence that expresses the extent to which one has a feeling of confidence that the stimuli deriving from one’s internal and external environments in the course of living are structured, predictable and explicable, that one has the internal resources to meet the demands posed by these stimuli and finally, that these demands are seen as challenges, worthy of investment and engagement
Alienation is the precise and correctly applied word for describing the major social problem in Britain today. People feel alienated by society. In some intellectual circles it is treated almost as a new phenomenon. It has however been with us for years. What I believe to be true is that today it is more widespread, more pervasive than ever before. Let me right at the outset define what I mean by alienation. It is the cry of men who feel themselves the victims of blind economic forces beyond their control. It is the frustration of ordinary people excluded from the processes of decision making. The feeling of despair and hopelessness that pervades people who feel with justification they have no real say in shaping or determining their own destinies.
Where I work, in a mixed, but mostly deprived inner-city practice, ‘alienation’ is the major social problem today. The following factors contribute to vulnerability, resilience and adaptive capacity.
Gender and Race
One leads to another. People who are themselves deprived are more likely to live in neighbourhoods with other deprived people, with higher levels of pollution, more drugs, violence, junk-food, poor schools, inadequate housing and so on. People with a low IQ are more likely to suffer mental ill-health and people with mental ill-health die prematurely from physical ill health. To be vulnerable is to be tossed around eddies of vulnerability.
Material factors include housing, finances, household goods, communication (phones/ TVs/ internet etc.), clothing, food, and utilities. It also includes the quality of the built environment such as green spaces, safe neighbourhoods, good schools, clean air, and good quality affordable transport.
I look after a lot of homeless patients, most of them are unofficially homeless, couch surfing or sleeping on public transport, in A&E departments or in their cars. There is such a shortage of affordable housing that the waits are now so long, as to be effectively indefinite. Overcrowding and inadequate housing are also prevalent. Housing is so desperately short and expensive that one of the main reasons we cannot recruit GPs is that it is too expensive for them to buy a family house within a reasonable distance.
Many of my patients are in debt – behind on their rent, or more frequently in debt to mobile phone companies, friends, family, loansharks or dealers. More than a few resort to crime or prostitution to try and get themselves out of debt. Michael Marmot explains the concept of Minimum Income for Healthy Living as follows,
A minium income is not only what is necessary for food and sheelter, but what is required to live a life of dignity and to take one’s place in society
Hoxton Street, like many streets in impoverished neighbourhoods, is full of cheap takeaways. A lot of homes I visit have no cooking facilities, many are sparsely furnished while others are dangerously cluttered with boxes and bin-bags. Many of my patients don’t have decent footwear, adequate for a wet day in an English winter.
Most people spend their lives surrounded by other people from their own social class, myself included. When I grew up the only doctor we knew was one for whom my mum happened to be a secretary. We didn’t know many professional people – nobody in my family from my parents’ generation had done A-levels, much less gone to university. Most of my patients would never come a across a doctor other than as a patient, while most professional people can count among their social networks people who are well connected, influential, powerful and relatively wealthy. This social capital is one of the main reasons that people with power tend to become more powerful. Not speaking English as a first language and ethnic minority status, (or even being black or brown skinned) are also barriers to making influential social contacts. Yassmin Abdel-Magied’s wonderful Ted Talk emphasises the importance of mentoring young people who ‘are not like you’ as a way to help young people move up the social hierarchy.
Violence is a daily reality for many of my patients, trapped in violent relationships, gangs and dangerous neighbourhoods. Fear of crime follows a steep social gradient; in the most deprived communities a third of people are afraid of mugging compared to less than one in fourteen in the least deprived communities (Marmot). This leads to people spending less time outside exercising or socialising. Many of my elderly patients don’t like to come out after dark. Shifting our appointments to meet the needs of ‘working people’ hasn’t helped the elderly and afraid.
Loneliness is not the same as being alone, although many vulnerable people are both isolated and lonely. Loneliness includes the harmful cognitive effects of low self-esteem, shame and depression with a tendency to be suspicious of others’ attempts to be socialable. Chronic loneliness, damages sleep, leads to depression and increases the risk of an early death by 20%. It cannot be cured by setting up groups with other lonely people, because they need help to change they way they feel about themselves and others, and this takes more complex theraputic interventions. I’ve written more about caring for lonely patients here.
People with a low IQ have higher rates of almost all mental illnesses and people with mental illness have higher rates of many physical illnesses (APMS 2014). Many of my patients have learning difficulties, many more are illiterate and innumerate and even more have very low health literacy. These problems cut ethnic and social divides, although they are strongly associated with deprivation. The ability to make yourself understood as well as understand the bureaucracy of a modern welfare state, varies very widely. GPs in deprived areas spend a huge amount of time helping people who struggle with this. Education appears to have less of an effect on intellectual ability, than on opportunity. Private schooling enables children who have the good fortune to have been born wealthy to benefit from smaller class-sizes, superior facilities and the chance to flourish. Selective education also deprives less wealthy or less able children and their families of the social contacts that contribute to resilience and success.
Chronic pain and depression are among the most debilitating conditions my patients suffer from, especially when they contribute to a spectrum of multi-morbidity. Neurological conditions like Parkinson’s disease that affect movement and balance make getting around in crowded streets a frightening experience and it’s not unusual for people to avoid going out as much as possible. ‘Frailty’ affects 10% of people over the age of 65 and 50% of those over the age of 85. It is defined as age-related decline affecting a range of functions including muscle strength, endurance, sight, hearing and cognition. At any age, bowel diseases like Crohn’s mean that every trip has to be worked around where the nearest toilets are – sudden bouts of bloody diarrhoea can come on without warning. Trying to get into a disabled toilet for someone with colitis can (and does) provoke abuse from strangers who cannot understand a disability they cannot see. Incontinence is very common – most of my patients have been suffering for a year or more before they pluck up the courage to tell me about it and ask for help. Respiratory and cardiovascular disease can severely limit how much someone can exercise. People now live for years with cancer, often with residual symptoms of pain, weakness and fatigue as well as fear of recurrence.
The commonest psychological problems patients suffer from are anxiety and the associated spectrum of social phobia, agoraphobia, panic attacks, OCD and depression. Mental health disorders are more than twice as common in the most deprived communities. All of these can exacerbate social isolation, make patients reluctant to seek help and reduce their ability to care for themselves and others. I meet many adults who have always severely struggled to cope with social situations who have never been assessed for autistic spectrum disorders. Personality disorders and shame are also highly prevalent and frequently associated with adverse childhood experiences.
Adverse Childhood experiences
Being the victim of abuse including sexual abuse, physical violence, emotional abuse, and neglect as well as witnessing domestic violence, drug and alcohol abuse and criminal behaviour are associated with harm that extends into adulthood. The damage is not just psychological, but also physiological – stress in childhood affects cognitive, immunological, neurological, endocrine and genetic development. The large, Welsh adverse childhood experiences (ACE) study published last month showed that,
Adults up to the age of 69 years that experienced four or more ACEs are four times more likely to develop Type 2 diabetes, three times more likely to develop heart disease and three times more likely to develop respiratory disease, compared to individuals that report no ACEs.
The report also found that over a 12-month period, those with four or more ACEs were three times more likely to have attended Accident and Emergency units, three times more likely to have stayed overnight in hospital, and twice as likely to have visited their GP, compared to individuals with no ACEs.
As if this wasn’t bad enough, exposure to air pollution in childhood leads to a four-fold increase in the likelihood of having impaired lung function in adulthood. It is responsible for coughs, wheezing and asthma, resulting in higher consultation rates in GP and A&E departments. It may lead to lifelong cardiovascular and neurological harms.
Gender and Race
This is a huge area, beyond the scope of this blog, suffice to say that omen tend to have more illness than men, especially mental illness, although they live longer than men. They are more likely to be unemployed or in insecure, low paid employment and are paid less than men for doing the same job. They bear the brunt of domestic violence and sexual violence and have greater health needs related not only to childbearing and menstrual problems, but also, significicantly, mental health.
Ethnic minority groups have greater difficulty accessing care, are less likely to receive medication and other medical interventions like screening that they might benefit from and are less likely to be involved in decisions about their health. They also are less likely to be referred for investigations or specialist review. About 20% of the patients I look after do not speak English and consultations are complicated by having a third-party translate. A lot is lost in translation, making things harder for patients and professionals.
Vulnerability and general practice
Research, from the Scottish Deep End GP project, summarised by Public Health consultant Greg Fell here continues to shine light on the impact of caring for vulnerable patients on general practice.
As noted earlier, interactions with GPs and other healthcare professionals are characterised by frequent, complex consultations containing multiple problems, a shortage of time, low expectations, lower enablement, poor health literacy, and practitioner stress.
GPs looking after the most vulnerable patients have to manage twice the rate of mental health problems as their colleagues in the wealthiest areas. Chronic pain, medically unexplained somatic symptoms, language barriers and intoxication are common problems, as well as those listed below:
It is not unusual to have to deal with two or three of these problems, in addition to the physical complaints that my patients bring in. Practices that have a rule, of one problem per consultation discriminate against vulnerable patients who almost always have multiple, inextricably linked problems. GPs from the Deep End practices, dealing with similar patients identified three needs,
There is a simple and important difference between complex and complicated. Something that is complicated can be understood by breaking it down into its constituent parts. Something that is complex, cannot be understood by looking at parts in isolation because they are all interwoven and inter-dependent. This is why it makes little sense to try to replace a holistic generalist doctor with several sub-specialists. Far better to give the generalist and the patient more time to spend with each-other.
For General Practice to be at it’s best requires adequate funding, which it is not. It requires adequate staffing, which very frequently, is inadequate. It requires a commitment to continuity of care, which is too rarely present.
The graph below (from Scotland) shows how mortality and physical-mental comorbidity (complexity) is far higher in patients attending practices in the most deprived areas, with no adjustment in funding:
Research from East London (where I work) has shown that someone aged 50 in the most deprived quintile consults at the same rate as someone aged 70 in the least deprived quintile
This level of complexity means that GPs are attending to multiple problems in the majority of consultations. Providing holistic, person-centred care, by doing the work of counsellor, physician, pharmacist and technician, while bearing witness to another small chapter in a patient’s life history, in little more than ten minutes, means that GPs attending to vulnerable patients are extraordinarily good value for money. We recently looked at about 200 appointments to see how many other people might have been necessary for each consultation if the GP wasn’t there, typically it was two or three. Without us, care will be more fragmented, time-consuming, less holistic and more expensive.
What can we do – as GPs, policy makers and patient advocates?
Know the evidence on social determinants of health. Start with the reading list below. Bring it into all your teaching, explain why some patients get sicker than others, younger than others, are harder to engage with care and are more likely to dies. Share the evidence with colleagues, politicians, and policy makers
Teach medicine relevant to the needs of the most vulnerable: we need more (and better) teaching on mental health, multi-morbidity, chronic pain, and medical generalism
Organise and network: Deep End GP is inspiring. Patients are not best served by GP practices being dogmatically independent. We need to network and work better together between practices, sharing resources and expertise. We need to work much better with community and voluntary services and the local hospital
Campaign. Medicine is a science and politics is nothing but medicine on a large scale. The inverse care law is not a law, it is an unjust policy that deprives the poorest people of the resources they need
How do poverty and stress affect your health? Podcast https://www.theguardian.com/science/audio/2017/nov/01/how-does-socioeconomic-position-affect-our-health-science-weekly-podcast
“It was impossible to explain to the healthy the logic of the sick, and he didn’t have the energy to try” Hanya Yanagihara, A Little Life
“There is a complexity to things that people who weren’t fucked as a kid just cannot understand” James Rhodes, Instrumental
For the first 2 years or so Ben (not his real name) behaved like an arsehole. It’s not really how doctors ought to talk about their patients, but, well, they do. Plenty has been written about it, for example. Though Ben behaved like an arsehole, I did not say (or mean to imply) that Ben was an arsehole. Shame is the state of mind that tells the person afflicted that the reason they behave like an arsehole, is because fundamentally they are an arsehole, or as James Rhodes writes in his raging account of music, madness and abuse,
When I was a child, there were things that happened to me, were done to me, that led to me operating my life from the position that I, and only I, am to blame for the things inside me that I despise. Clearly someone could only do those things to me if I were already inherently bad at a cellular level. And all the knowledge and understanding and kindness in the world will never, ever change the fact that this is my truth. Always has been. Always will be.
Rhodes’ account screams from the page. He wants to spare you the details of his abuse, but you are left in no doubt about how narcissistic, vile, obnoxious, immature, selfish and destructive he has been to those around him, and how much he hates himself. In this respect, Jude, the fictional main character of A Little Life – who shares with James the experiences of being repeatedly raped in childhood, a broken spine, self-inflicted harm by cutting and suicide attempts, is just too nice to be believable.
What the fictional Jude and the real James share most memorably is that shame is the stain that abuse leaves on its victims for life. Jude’s rapist, Luke would tell him, “you were born for this”, ‘and as much as Jude hated it he knew he was right’.
Shame is the legacy of all abuse. It is the one thing guaranteed to keep us in the dark, and it is the one thing vital to understand if you want to get why abuse victims are so fucked up.
Caring for adults, who were sexually abused as children, isn’t a job I knowingly went into. I’m an ordinary GP working in Hackney with no special skills or interests to speak of. Everything I’ve learned about the effects of abuse, trauma and shame I’ve learned on the job. I first wrote about shame in 2012 and it remains the most read and commented on blog I’ve ever written. Almost every GP I know is overwhelmed with caring for adults who suffer from shame, many of whom have been abused. They present with chronic pain, medically unexplained symptoms, anxiety and OCD, paranoia, fatigue and drug and alcohol addiction. We label them with medical syndromes, psycho-somatic, psychiatric and personality disorders. We refer them for medical investigations, specialist opinions, psychiatric assessments and psychotherapy. They leave us shattered, demoralised, burned out. They are chaotic, exhausting, and also among our most loved patients.
I’ve recently been doing work with old and young GPs about our favourite patients. For young doctors, favourite patients are friendly, cooperative, honest, and grateful. They present with symptoms that lead to a diagnosis and a cure or failing that, a good death. Gratification is quick. Dreaded patients are the opposite of all these things. I asked four experienced GP trainers in Lambeth each to describe one their favourite patients to a room full of trainees. The patients they described were hard to form relationships with, took time and hard work to get to know, were argumentative, dishonest, chaotic and disruptive, unwilling partners in care. For some it took years, decades even to reach a point of mutual trust and respect, but eventually they were rewarded with the kinds of relationships that can only come with going through and overcoming hardship together. Evidence about resilience of doctors who work in challenging areas concluded that they were sustained by a deep appreciation and respect for the patients they cared for. Gratification with challenging patients comes slowly. Those who frustrate us most will eventually be the ones that sustain us, but only if we preserve the continuity of care that we are in grave danger of losing in an increasingly transactional NHS.
In his memoir, Rhodes’ anger left me feeling assaulted and furious as I so often feel after spending time with my patients. We are taught to reflect on how our patients make us feel as an indication of how they, themselves are feeling, but are not very well equipped to make sense of these emotions. Medicine has pathologised depression to the point that when we asses ‘mood’ as part of a formal ‘mental state assessment’ we tend to focus on a two-dimensional emotional scale, between mania and depression. We tend to be less curious about other emotions like hatred, anger, fury, self-loathing, fear, dread, terror, despair, grief, bewilderment, awe, wonder, love, and hope that don’t fit so neatly into categories. We don’t have drugs to treat self-loathing, though God knows how many have been tried. The aftermath of child rape (Rhodes’ rightly insists on calling this type of abuse what it is) is a profoundly narrowed, massively intensified emotional register. In music Rhodes discovered mentally tortured composers who could express these same feelings with the same intensity as him and were also capable of other emotions with equal intensity. And in this he discovered a reason to think that life might be worth living. His book is so emotionally fraught that reading it is like hearing it on the radio at full volume. A reviewer in the Telegraph hated it for this reason, but didn’t even try to reflect on why it had that effect on him. The way these books made me feel, is a challenge to the myth of the objective, detached clinician. For one thing, I’ve got young sons, and cannot help but imagine what it would be like if what happened to Jude and James, happened to them. Working with the victims of abuse and trauma is emotional labour. Not only as a father, but as doctor looking after the adult survivor/ victims of child abuse – the volume makes perfect sense. Survivors of abuse live in a world where emotions are turned up to full pitch. It is why they are so frequently labeled with ’emotionally unstable personality disorder’, and a range of other ‘personality disorders’. It is why they so frequently turn to anything that turns the volume down; cigarettes, alcohol, comfort eating, self-harm, valium, codeine, heroin, gabapentin, amitriptyline, sertraline, fluoxetine, etc. These clip the top and the bottom off the emotional register, making life bearable, but at the same time diminished. This is not (absolutely not) to diminish their value for some people – if a little less ecstasy is the price to pay for a little less agony, it might also be what gets you to the end of the year alive. I’ve been listening to Rhodes’ playing piano while I write this, and the volume soars up and down, in contrast to pop-music compressed as if on psychiatric medications. It’s why it is so hard to listen to classical music in the car. For James and even more so for Jude, coming off psychiatric drugs allowed both the light and the demons back in. Fortunately for James, music and friends are holding them back.
Art and science
I’ve struggled for 20 years to make sense of (and help) patients who have been abused in childhood and these two books have done more than anything in medical education to help me. I am about the same age as Rhodes and am horrified by people of my parents’ generation – many whose opinions are taken seriously in politics and the media, who fail to recognise the lasting harm that child abuse leaves on its victims. I know some who were on the receiving end who resent others for not coping as well as they have done. Others simply do not understand the consequences because their professional lives and social circles mean they never meet the victims. Many people who have been abused that I look after have never been able to sustain any job for long enough to prevent them falling into and remaining in poverty. Social classes rarely mix they way they do in general practice and few privileged people spend much time understanding the lives of people who are living in poverty. I’ve come to an understanding of the effects of abuse and shame through literature to a large extent, scientific research in part, but patients most of all.
Ben was drunk, often paralytic for about the first dozen or more appointments. Sometimes he would lie on the floor, often he was too incoherent to make any sense at all, sometimes he was sexually provocative and he was always swearing, but never abusive. We spent most of the first two years together (as doctor and patient) trying to do something about his alcoholism and depression. It was then that he was arrested and (in his late 30s) told the arresting officer about the child-rape he endured and who was responsible for making him the drunken arsehole he was. For the next year I tried to support him as best I could while the police investigated and interviewed the men who abused him. Ben fell apart just as James and Jude did, with drink and drugs, self-mutilation, overdoses and other forms of self-directed violence. It was appalling to watch and I felt completely out of my depth. I fully expected him to kill himself. The psychiatrists were as helpless as I was to stop it and we were all in total despair at what we knew would be a failure to bring anyone to justice. The odds are stacked so massively against the victims of abuse – they are so fucked up, and the abuse is usually so far in the past that I have never heard of anyone being prosecuted for abusing my patients. Like Ben, a child who has been raped is very unlikely ever to be considered a reliable witness as an adult. Only a tiny proportion succeed.
If there is any light to come from these books, apart from the redemptive power of music – it is the importance of stable adult relationships. Rhodes says of helping people who suffer with this level of shame,
The only way to get through to them is to love them hard enough and consistently enough, even if from a distance, to begin to shake the foundations of their beliefs. And that is a task that most people simply cannot, do not, will never have the energy and patience to do. Imagine loving someone that unconditionally.
Jude’s friendships in A Little Life represent the type of love known as agape, described by CS Lewis in The Four Loves as the highest level of love known to humanity: “A selfless love, a love that was passionately committed to the wellbeing of the other”. Rhodes finds this in his love for (and from), his son, his partner and his closest friends. As a GP I may not be in the business of love, but I am in a position to provide long-term care, for as long as we are committed to one-another as doctor and patient. As Rhodes says, ‘real compassion comes from understanding that what feels true for someone is, for all intents and purposes true.’
This is why empathy is how we should respond to shame. Perhaps the greatest and most deeply held fear of someone suffering from shame, is being seen as they really are. What I hope they get from a GP, is a stable adult relationship in a world in which these are vanishingly rare. Because I am a GP and not, for example, a shame-focused trauma therapist, sometimes we can just talk about simple stuff like a sore throat, or cancer, or literature. The GP who gets to know them over years gets as close as they can to knowing them as they really are, and in full sight of their flaws, becomes more compassionate and respectful.
Both A Little Life and Instrumental have given me extraordinary insights into shame and the lifelong effects of abuse. They are helping me daily and I would recommend them to all health professionals.
I have been too quick to reassure and too slow to think about what it means.
For the last few months I have been listening in on the conversations that trainee GPs have with patients, and they have been listening to me. By listening to one-another and seeing how they respond, we have concluded;
The ‘catch-all’ phrase of ‘reassure the patient’, that is used in many medical text books in the management of medical and dental conditions should be edited out.
“I know it’s nothing serious, they keep telling me that. So why can’t they tell me why I’m still in pain? They’re basically just trying to get rid of me, because to them it’s trivial, but to me it’s serious, it’s ruining my life. There are days when I can barely get out of the house, but I have to, I have to get the kids up and get them to school, but I’m in agony, I’m exhausted, I’ve barely slept. I’ve been crying half the night in pain, every time I move it wakes me up, so eventually I give up trying to sleep. I’ve been told, ‘there’s nothing broken’, ‘it’s not cancer’, ‘the scan doesn’t show anything’, ‘the blood tests are all normal,’ but nobody can explain why it hurts so much. I’ve even been told that I’m anxious, but I’m not anxious, I’ve never been anxious. I’m depressed, really miserable a lot of the time, most of the time probably – wouldn’t you be?”
Angie, 34, Low back pain
“I remember the nurse in A&E, I was terrified, my leg was in bits – bone sticking out of my ankle, gas and air on my face, needles stuck in my arms, people everywhere, and this one nurse in the middle of it who never left me. Told me to look at her when I was screaming, calmed me right down, squeezed my hand really tight – I remember that – so tight it took my mind off my foot while the others were manipulating it or something, she stared back at me, firm, calm … loving … can I say that? That’s how it felt, at the time not in a sexual way, but more like, maternal – because when you’re that scared – I thought they were going to have to amputate my foot – it brings back all those flashbacks of when you were a kid and your mum, or dad for that matter, hugs you and tells you it’s going to be all right. And you believe them, because you’re so vulnerable and so afraid you’ve got no choice, you just let go and trust them completely and then, in that moment the fear melts away.”
Duncan, 26, Motorbike accident
“I never mentioned my heart, but that’s what they always say, “it’s not your heart, you’re not having a heart attack” Every time I go in they do the same things: heart tracing, blood tests, chest x-ray. And then they come round and say “everything’s OK”, and “isn’t that good” and then I say, “well, no, not really because I keep getting the pains and nobody knows what’s going on.”And then you can see, they look disappointed, actually a bit pissed off sometimes, because it’s like I’m supposed to be a bit more grateful, and that’s when they just say I have to go back to my GP.”
Trevor, 56, Chest pain
“My neurologist’s history-taking was so structured, so searching, so thorough, that I felt that, for the first time, my pain was being listened to. The consultation was, in itself, therapeutic”
“To be honest I can’t remember half of what the doctor said. There were so many things I had to look out for like the temperature being over something, and the breathing being fast – but how fast? And having a pee – I can’t remember how many times an hour or was it per day – no it can’t have been in a whole day because that’s far too long and anything might happen. But I remember she listed all these things why she wasn’t worried about my baby, but Kai was basically – from what I could see, no different from how he was before and I couldn’t sleep for worrying about what to do if anything changed which is why I’ve bought him back now.”
Kelly, mother of Kai, 9 months viral gastroenteritis.
‘Reassurance’ is not always reassuring.
One difference between young and old doctors is that young doctors’ clinical reasoning is based on a careful review of what they know about all the possible things that could explain their patient’s presenting symptoms. They employ structured principles and use diagnostic sieves considering in turn, infective, inflammatory, neoplastic, endocrine, etc. causes and try to figure out which is most or least likely. Often, none are particularly likely and they conclude that they don’t know what it is, therefore it’s nothing serious (or interesting) and therefore, ‘nothing to worry about’ – or rather, nothing that they themselves are worried about. By contrast, experienced doctors use case-based reasoning. Faced with a patient, they consider how much they are alike or differ from the hundreds or even thousands of similar patients they have seen before. Intuition and experience are as valuable as structured reasoning as this essay from BMJ quality and safety shows. Young doctors I watch often conclude a consultation by reassuring themselves aloud. By contrast, a more experienced doctor can say, in answer to the patients’ question about what to expect, that in their experience of many patients with the same symptoms or condition, this is what usually happens.
More often however, the thing that experience teaches us, is that reassurance is more subtle, more complex and less often warranted than we previously thought.
Reassurance may be cognitive or affective. In the example above, Duncan was given affective reassurance. The nurse recognised his fear and there was an empathic connection. Affective reassurance come from the way we behave; calm, assured, confident, kind and gentle. Eye contact, appropriate touch, a hug even. The way we dress – smart but not overly formal, and the way we move; at ease, but not slovenly, can be reassuring to patients. The way we arrange chairs in a room, even lighting, pictures on the walls, space on our desk, tissues to hand, but not too obvious. Buildings can put patients and clinicians at ease with clear signs and helpful receptionists, considered acoustics, quiet spaces and immediately accessible lavatories. Continuity of care is an important aspect of reassurance – a familiar clinician, receptionist or other member of staff, in a familiar place, especially in the context of a serious, ongoing illness makes a great difference.
Cognitive reassurance includes information – not only clinical details about the condition, treatments and prognosis, but also facts about waiting times and how to get help and support.
Knowing what kinds of reassurance are appropriate and what the patient needs to be reassured about is important. Trevor needed affective reassurance, and got it. Kelly needed cognitive reassurance, but did not.
The dark side of reassurance
Reassurance often concludes a consultation but it is also used to conclude a consultation. It is a way for the clinician to draw a conversation to a close and get the patient and their relatives out of the room. Even if this is not the intention, and it quite often is, then it may be perceived this way.
There are times when reassurance may not be appropriate or even possible, especially when the prognosis is very poor, as in this wonderful essay by David Steensma about a young woman with metastatic cancer,
It’s not that I can’t understand the impulse. Medicine would be a chilling enterprise without the motivation to do whatever possible to make bad situations a little better. But a lie breathed through silver is still a lie. Careless or glib reassurances do harm. Worse than platitudes, they are a betrayal. In the face of this woman’s darkness, it seems to me that any reassurances must come from the sphere of the chaplain, not the honest physician.
It cannot be assumed that patients want reassurance. Attempts may be perceived by patients like Angie and Trevor (above) to be patronising, a dismissal of their underlying concerns or a cover for the fact that the clinician doesn’t actually know what’s going on.
The effects of reassurance can be intoxicating. The most addictive drugs: alcohol and benzodiazepines especially, are potently anxiety relieving and many patients who are addicted have a history of anxiety. When the drugs wear off, the rebound effect is a heightened and more intense anxiety than before. Reassurance can be addictive too. A clinician can, like their patients, be intoxicated by the short-term relief that comes from repeated reassurance, but they soon discover that over time, the effects are diminished and shorter lasting. There is a considerable literature on the harms of repeated reassurance in anxiety – with guidance on more appropriate behaviour, e.g. here and here.
The paper quoted at the beginning of this piece highlights how children may perceive reassurance as a prelude to something bad about to happen, like an injection. The oft repeated, ‘this won’t hurt a bit’ or ‘just a little scratch’ doesn’t help.
A silver lining
For many patients, an unspoken fear is that they won’t be taken seriously and they won’t be understood. They fear that they might not be able, or be given the opportunity to say what it’s really like for them. Philosopher Havi Carel, in her wonderful book, Illness, about her experiences as a patient, describes this experience as epistemic injustice. Too often doctors control the conversation by asking the questions whose answers they want to hear and do not allow patients the opportunity to say what they need to say. Very often, especially patients who struggle with words, or whose symptoms cannot easily be described, need to improvise with clinicians to create descriptions. Paul Haidet has compared this with improvisation and jazz,
I find that I am at my best when I can give patients space to say what they want to say, using my communications to gently lead patients through a telling of the illness narrative from their perspective, rather than forcing the narrative to follow my biomedical perspective. In this space, patients often either tell their story, allowing me to understand the context around their symptoms, or ask the questions that allow me to tailor my explanations to their unique concerns. Unfortunately, in our culture, we are not generally comfortable with pauses or quiet. When the situation is compounded by the chaos of a busy clinic, it becomes difficult to remain focused and open to the directions that patients take us. For most practitioners, space does not come naturally; it takes practice and discipline to develop.
Not all illness warrants reassurance just as not all illness is accompanied by suffering. Recognising suffering may be far from straightforward. Barry Bub, in his wonderful long essay, The Patient’s Lament, writes,
in order to listen better, physicians need to know what to listen for; to understand the significance of what is being heard, and to know how to respond therapeutically.
For clinicians whose main job is listening, like GPs, – listening is a clinical skill that needs to be continually developed and practiced. It is analogous to a surgeon’s craft and cannot be taken for granted and can always be improved. As Atul Gawande has argued in his 2011 essay, ‘Personal Best’, it is extraordinary that while professional athletes can see the value of a coach when they are at the top of their game, medical professionals go it alone for almost their entire career once their training is over. Reassurance, for example is a skill that I’ve never been taught and after twenty years in practice, I’ve discovered it’s something I’ve barely considered. I am not alone, Professor Tamar Pincus concludes in a recent review of the literature,
The area [reassurance] is incredibly under-researched, and we are hampered by poor measurement of the complex interactions that take place during the consultation.
I am not entirely sure that ‘more research is needed’. This is a philosophical and pedagogical problem, as much if not more than an empirical one. What David Steensma recognised when faced with a young woman with a terrible prognosis was that there remained may things about which he could be reassuring, for example,
Reassurance that when all your hair is gone, and wasting or open sores have stolen your beauty, that we will choose our words carefully.
Reassurance that we will not be bound by rigid protocols and will use all of our creativity to try to solve your problems.
Reassurance that there are no foolish questions in the consultation room.
Reassurance that when you visit me in the clinic, I will let you finish your sentences and will not hint to you that you are overstaying your welcome.
I think that reassurance is a clinical skill that is as vital as any other. It begins with listening to patients and depends on empathy, which can be taught and learned. And this, for me, is just a start.
Thanks very much to the organizing committee and Julie Wintrup especially for inviting me today. The Everyday Ethics conference is wonderful. It is ethics for those of us who are physically, intellectually and emotionally involved in care. Too often medical ethics – and apologies to those enlightened ethicists present today – fails to speak to the concerns of health professionals and patients. Just as evidence based medicine has separated disease from the lived experience of patients with disease, so medical ethics has separated ethics from the lived experience of people who practice medicine. We are people who agonise over decisions every day, who lose sleep worrying about our patients, who fall out with our colleagues, who have lives and personal histories, personalities, values and virtues that impact on everything we think and do. We are expected to be objective, professional and detached. But we are also human. We can be both.
Today I want to show that we can be professional and human
Everything starts with context. On Saturday I crashed during a bike race and my shoulders are covered in grazes and my neck is pretty sore, so I haven’t been able to sleep much since then and I’m very, very tired. I’ve cycled here today … in the pouring rain. Being tired and sore makes me feel a little fuzzy and anxious … I also have a family history of anxiety and Asperger’s, so the roots of my anxiety lie probably in my genes, my childhood and a lifelong difficulty judging social cues. Like many people, I find online life provides a settling mediation for social interaction.
I am feeling really anxious, standing here. Trying to get the right balance between engaging with you, the audience and not losing my script. Last year stood in a similar situation, speaking in a debate without a script and I had a panic attack. I clammed up, my mouth went dry, I could barely speak, I couldn’t remember anything I wanted to say, I was sweating profusely, my stomach was making more noise than my fumbling speech. My heart was racing. I wanted to close my eyes and disappear and wake up to find that it was, in fact a nightmare.
The interesting thing was that afterwards, apparently, nobody in the audience had noticed. People who are anxious are usually very good at hiding it from others. We are afraid of being found out and being seen to be anxious and vulnerable. We don’t want to bring attention to ourselves. We don’t want to make you feel uncomfortable because of our anxiety.
Today I want to help make being anxious more acceptable
It would be strange if clinicians were not anxious. We are expected, everyday to make life or death decisions, and give potentially lethal drugs to patients who are already precipitously close to death. We make mistakes and sometimes patients are harmed. All this takes place in an increasingly vengeful culture.
Nevertheless, I suspect that most of you will be reassured to know that most doctors worry about their patients. If you’re not entirely reassured, then you will probably agree that there is a level of concern somewhere between reckless conviction and blind panic that combines just the right amount of confidence and vigilance.
Human physiology provides a similar service, maintaining everything from body temperature and blood pressure to hormones and electrolytes at levels neither too high nor too low to support life. If one parameter should go out of range, then unless it is quite quickly corrected, the effects cascade and the patient’s condition becomes critical.
Like hormones and blood pressure, anxiety is a part of the human condition that oscillates from day to day. Too much and the effects can be overwhelming. The amount that each of us has varies because to a fairly large extent we inherit it from our genes and formative childhood experiences. At this point, it is worth noting that usually when we find ourselves or our colleagues struck with anxiety, we tend not to look very far beyond the immediate anxiety provoking situation – the acutely sick patient, the medical error or the unassailable demands of the job. We overlook the personal narrative and wider context within which the anxious doctor finds herself.
Anxiety can be a physical and a psychological experience. It has philosophical, spiritual, cultural, and historical dimensions. According to some definitions anxiety differs from fear in that fear is directed to a specific object whereas anxiety exists without anything to be anxious about. When anxious patients present, we look for a spectrum of related symptoms and conditions including generalized anxiety, specific phobias, obsessive-compulsive traits and panic attacks. Many patients suffer from all of these, compounded by profound physical symptoms including irritable bowel syndrome, palpitations, dizziness and trembling. For most patients these symptoms are transient, but for others they are ever present. Drugs like alcohol, heroin and valium have profoundly anxiolytic (that is, anxiety relieving) effects, horrendous withdrawal symptoms in which the anxiety returns worse than before, and because of this are among the hardest to give up.
Doctors are no different from other people. A medical degree is no defense against anxiety. We suffer the same existential angst, come from the same human gene pool, and share the same physiology as our patients. We are more likely than our non-medical peers to have problems with addiction to anxiolytic drugs. But there are issues relating to anxiety that affect us as doctors that we need to consider, and now is an important time in medical history as we shall see.
Uncertainty is a cause of a lot of anxiety. Some kinds of uncertainty can be resolved and others cannot. Not knowing the difference is particularly anxiety provoking.
For younger doctors and medical students uncertainty is primarily around knowledge of objective facts, unbound from clinical contexts which they have yet to encounter. Aristotle called this kind of knowledge, ‘episteme’. In medicine this can include knowledge of anatomy, physiology and pharmacology, or a spot diagnosis. Most of us can recall the feelings of anxious dread when we are asked to identify the origin of muscle we’ve barely heard of or a part of the Krebs Cycle. To avoid this kind of uncertainty we have to go away and learn more, or at least know where to look or who to ask. But it is impossible to know everything, so one defense is to focus our expertise on as small an area as possible, so that in effect we know almost everything about almost nothing. You can then be pretty certain that if you don’t know, you don’t have to worry about it so you refer the patient back to their GP. GPs by contrast sometimes feel as though we know almost nothing about almost everything and we are left holding uncertainty.
Another kind of uncertainty relates to the Aristotelian term, ‘techne’. This refers to crafts, such as clinical skills or surgical procedures. This kind of uncertainty can be overcome by training, practice and familiarity. Looking back at the end of a distinguished career, neurosurgeon Henry Marsh reflected that he had no trouble with his craft, brain surgery was the easy bit. And yet, in his book, First Do No Harm he also said, “Few people outside medicine know that what troubles doctors most is uncertainty”. He wasn’t uncertain about the diagnosis or how to perform the operation. In many cases was uncertain about whether or not to operate at all. As a younger surgeon he recalled, if in doubt, it was much easier to operate. But as time went on he began to become more doubtful. He was talking about moral uncertainty. He recognised the important difference between knowing what can be done, and knowing what one ought to do.
Doctors experience other types of uncertainty that can contribute to anxiety
Uncertainty of status or role
For new doctors, it is often unclear what is expected of them in their new role. ‘What am I supposed to do in this job, with these people, in this hospital?’ Without a comprehensive induction, a supportive team and a mentor this can provoke considerable anxiety.
Not knowing how to get things done is unsettling, as what you might imagine to be standard NHS procedures are anything but. One example is standards of dress codes – I remember one surgical firm in which suits were expected and another in which they were frowned upon. Scans, blood tests, referrals and holidays are arranged in hundreds of different ways throughout the NHS. Time spent trying to figure this out makes us run late and makes us more anxious.
This is uncertainty about interpretation and meaning, not only in relation to patients’ symptoms, narratives and the results of their investigations, but also in relationships with colleagues and management, especially with the loss of relational continuity that used to give us the opportunity to get to know one another. Sociologist and grand-master of medical narratives, Arthur Frank has described the loss of relational continuity as ‘a moral failing of modern healthcare’.
Financial uncertainty and uncertainty about the NHS
A recent European poll found that nearly ¾ of British citizens asked, expected the NHS to decline in the next few years. As a result of the government’s commitment to austerity, NHS funding has fallen further below the rate of growth in demand for the longest period in its history. At the same time there has been a 12% real terms reduction in funding to adult social care. Many doctors and other health professionals wonder how long the NHS can survive. Alongside this fear is the turmoil caused by the massive re-disorganisation of NHS structures, increasing privatization and a growth of support for charging patients.
Uncertainty about contracts
Spreading a workforce that is presently stretched even more thinly is putting many junior doctors, medical students and would be medical students off a career in medicine. We are already close to having the lowest number of doctors per head of population in the rich world. Young doctors are emigrating or choosing to change career.
This surely is no less than it has ever been. What does it mean to be a good doctor? What is the point of medicine? How much is too much or too little? These are good questions. For one thing we’ve done too much that doesn’t work for too long, and for another, what it means to be a good doctor in an age of patient-centered care is a subject close to the hearts of many of you here today. Above all perhaps, we are anxious about not being good enough. When we are engaged in therapeutic relationships, if our patients don’t get better, if feels like a personal failing, not just a failure of the medication. Working in an increasingly under-resourced healthcare system we are made anxious by the sense that we never have enough time for our patients, that we have rushed and cut corners in order to do everything that is expected of us.
Uncertainty may, as Henry Marsh suggests, be the thing that troubles doctors most. We may also happen to be living in an Age of Anxiety.
The Age of Anxiety
Many great thinkers have been plagued by anxiety including Sir Isaac Newton who had a nervous breakdown in 1638, and for the next five years barely left his room. Darwin was also largely housebound for decades on account of anxiety and Freud was severely anxious throughout the early years of his career. The Age of Anxiety was the title of a poem by WH Auden in 1947, I suspect that few people are familiar with it, phrase is familiar and has been a bumper-sticker for our times and a popular subtitle ever since. Last year, Scott Stossel, the editor of the Atlantic Magazine, published My Age of Anxiety: a cultural, historical, philosophical, scientific and deeply personal account of anxiety. For many thinkers the anxiety of the modern age can be blamed on Freud’s opressive super-ego being superseded by a permissive super-ego whose cheery imperative, ‘enjoy!’ is served with almost everything. According to Lacanian philosopher Slavoj Žižek,
“Psychoanalysis does not deal with the authoritarian father who prohibits enjoyment, but with the obscene father who enjoins it and thus renders you impotent or frigid.” By way of example he tells of the simply repressive father who tells his children to visit their grandmother, whether they like it or not. Žižek contrasts him with the post-modern father who says, ‘we’re going to visit your grandmother, it’s up to you whether or not you come with us, it’s your choice, but you know how much she’d love to see you and how upset she’d be if you didn’t come?’ How can the child say ‘no’? This way, not only do they have to visit grandma, but it has to be their choice and they have to enjoy it!
The Kantian imperative, ‘you can because you must’, has become inverted, ‘you must because you can’. In other words, ‘you must enjoy yourself because everything is permissible’.
Put another way, these days there is no need to be impotent, unhappy or unfulfilled, because we have Viagra, Prozax, human rights and freedom to choose. But because, somehow we’re still impotent, unhappy and unfulfilled, we feel anxious. This is the Age of Anxiety.
The NHS Act of 2012 was called ‘Liberating the NHS’ and ‘patient choice’ was its centrepiece. No irony was intended. I attended a debate before the act was passed and I was challenged for not ‘believing in patient choice’ by people who couldn’t fathom that choice, freedom and happiness are, by and large independent of one-another. Power begets choice, not the other way around. Power depends on having a bigger share of material resources.
The welfare state is being stripped away under the pretence that it is infantalising and fosters dependency, hence the withering moniker, ‘nanny state’. A positive conception is that a maternal state takes care of its citizens in times of vulnerability. The stripping away of the welfare state leaves vulnerable citizens – that is, NHS patients, anxious about how and where they will live. And they bring this anxiety with them into the consulting room.
Anxiety in the consultation
Anxiety about money, benefits, housing, employment, crime and so on makes you feel physically ill. The anxiety manifests with physical symptoms and sometimes overwhelming preoccupations with physical health. It takes a courageous clinician to attribute to anxiety, palpitations, stomachaches, breathlessness, and transient neurological symptoms in patients already suffering from multiple chronic conditions and taking several different medications.
Emotions are contagious, after a clinic full of depressed and anxious patients, a doctor with even the slightest degree of empathy will feel weighed down with similar emotions. People who are anxious are afraid of upsetting other people and tend to be on their guard, so that an ambiguous social cue from the doctor, for example a yawn or a casual gaze at the computer screen, is more likely to be interpreted negatively, triggering a defensive or even hostile response from the patient. Unless things are handled skillfully the consultation can become dysfunctional and more anxiety provoking.
So far, so much to make us anxious?
So how do we respond, and how should we respond?
In 1959 Isabel Menzies Lyth was asked to carry out an investigation into an NHS teaching hospital in crisis. Senior nurses felt the service was at the point of breakdown and one third of nursing students were giving up their studies. She noted,
Nurses face the reality of suffering and death as few lay people do. Their work involves carrying out tasks, which, by ordinary standards, are distasteful, disgusting and frightening. The work arouses strong and conflicting feelings: pity, compassion and love; guilt and anxiety; hatred and resentment of the patients who arouse these feelings; envy of the care they receive. The intensity and complexity of the nurse’s anxieties are to be attributed primarily to the peculiar capacity of the objective features of the work to stimulate afresh these early situations and their accompanying emotions.
She discovered that in order to protect the students from anxiety, a wide range of Social Defences Against Anxiety were employed, many of which will be familiar to those of us working in the NHS today.
Splitting up the nurse/ patient relationship. Nurses were prevented from providing holistic, continuity of care, because of the potentially anxiety-provoking emotional attachment this might lead to. Unfortunately this lead to depersonalisation, categorization and denial of the significance of individual patients.
Detachment and denial of feelings e.g. senior nurses understood juniors’ anxiety and distress, but lacked confidence in their ability to handle it except by reprimand.
Attempts to eliminate complex clinical decisions by ritual task performance. For example, one nurse for observations, another for medications, another for dressings and so on. The same thing has happened to doctors with protocols and pathways enforced by financial incentives.
Reducing the weight of responsibility in decision-making by checks and counterchecks. Unfortunately this leads to so much time being spent on documentation that there is little left to be spent with patients.
The reduction of the impact of responsibility by delegation to superiors. Students and junior nurses were not allowed to made decisions or take responsibility even for tasks they were capable of.
Collusive social redistribution of responsibility and irresponsibility, i.e. rather than admit that everyone was feeling anxious, a collusive system of denial, splitting and projectionmeant that everyone was blaming someone else. Anxiety became a problem of anxious individuals, not an anxiety provoking organisation.
Purposeful obscurity in the formal distribution of responsibility
Avoidance of change …
Menzies Lyth was writing in the late 1950s when professional knowledge was shrouded in secrecy, paternalism was unquestioned and external scrutiny frowned upon. Don Berwick, with whom many of you will be familiar with for his work on quality and patient safety, describes this as Era 1. According to Berwick, we have responded to Era 1 with Era 2, “a massive, ravenous investment in tools of scrutiny and inspection and control, massive investment in contingency, and massive under-investment in change and learning and innovation.”
The experience of Era 2, for the majority of NHS clinicians is that we are suffocated by the Sisyphean task of trying to measure, regulate and inspect everything that could conceivably count for quality or safety. The government is mistaken in the belief that this reassures patients or motivates professionals.
As Berwick says,
“Inspection does not achieve continual, pervasive, never- ending improvement. It doesn’t foster creativity or learning or pride, it poisons them, because the main harvest of inspection isn’t learning, its fear.”
There is no point telling the vast majority of health professionals, who are committed and conscientious, that they have nothing to fear from inspections. Like my 4 and 6 year-old children who are facing exams at primary school, fear is a reflection of our underlying anxiety and bears no relation to the quality of our work.
Good organisations foster creativity, learning and pride and contain anxiety. Containment of anxiety is a concept that has been developed since at least Menzies Lyth’s time. Originally conceived to help understand maternal-child relations containment has been applied to organizational psychology. It is a process of being receptive and accepting of emotions with attempts to understand and make sense of them. It entails looking at all the contributory factors, including the parents’ behaviour. If a child learns that anxiety is unacceptable they will try to hide it. Real feelings are replaced by defences against them and in time the child becomes alienated from their own true feelings and from other people.
In medicine, for most of us, most of the time, it is simply not acceptable to be anxious. The anxious doctor is too slow, asks too many questions, requests too many tests, makes too many referrals. We may very well suspect that a colleague who works like this is anxious and in need of help. Quite possibly they are employing defenses against uncertainty and anxiety. But according to a recent editorial in the British Journal of General Practice, uncertainty should no longer be tolerated. Roger Jones, the editor, said,
“Diagnostic decision making in general practice has floundered among unhelpful phrases such as ‘tolerating uncertainty’, ‘using time as a diagnostic tool’ and ‘letting the diagnosis emerge’, which have sadly passed into our lexicon. At worst, this approach to diagnosis is sloppy and idle…”
This is surely mistaken. Studies have shown that a third to a half of symptoms that GPs are presented with do not fit a diagnosis. As Iona Heath, the great philosopher of General Practice has observed, we are gatekeepers between illness and disease, where Illness is what the patient feels when (s)he goes to the doctor and disease is the diagnostic label we apply. Making a diagnosis when we are unsure what the symptoms represent is a way of closing the doors to the possibility of other explanations. Curiosity is cut short and empathy curtailed. Empathy, according to Leslie Jamieson, author of the wonderful, Empathy Exams, is asking questions whose answers need to be told’. In 90% of cases of back pain, chest pain, dizziness, fatigue and in children with abdominal pain, I cannot make a diagnosis. It is especially hard to act with compassion – literally, ‘with suffering’ – in conditions like chronic pain, where our diagnostic labels and therapeutic interventions offer so little.
And yet, all the time we are teaching our trainees and students that uncertainty can be overcome. I was recently working an out of hours shift with an anxious trainee. He had referred a child to the paediatricians because the child had had a fever for 6 days and he couldn’t find a cause for it. “I was taught that you couldn’t send a feverish child home without finding a source for their fever”, he explained – as justification for the referral. I asked what the paediatric registrar had said after reviewing the child. “He said that it was tonsillitis”. “And what did you think?” I asked, “Well his tonsils looked fine, his cervical nodes weren’t enlarged. He didn’t even look that sick, but his temperature was 40.5 and it was the 6th day of fever”. In my experience it is very common for children to have a fever with no identifiable source of infection, just as it is very common for doctors to say to parents, “It’s tonsillitis” by way of explanation. What parents and trainee doctors learn is that the difference between GPs and specialists or between novices and experienced doctors is diagnostic certainty. Our trainees expect to reach a point where they don’t experience uncertainty any more. The truth is that it may be too hard to bear.
We need the wit to resolve uncertainty that can be resolved, the humility to accept that which cannot and the wisdom to know the difference. And the confidence to admit we don’t know.
Containing anxiety means accepting that anxiety is nothing to be ashamed of and that uncertainty is, to a great extent inevitable because medicine is not a science, but a moral practice informed by history, rituals, narratives, social relations, power and politics, the arts and more besides science.
The benefits of anxiety
Anxiety does not stand alone, separate from other virtues. It is intimately associated with vigilance, emotional intelligence and empathy – all of which are vital for safe, compassionate care. An anxious colleague should give us pause to think about whether our organisation is containing, caring and a healthy place to work.
Be on the look out for defences against anxiety. They are a sign that anxiety is not being contained. Defences can be counterproductive, merely displacing anxious feelings and alienating staff, getting in the way of safe, quality, compassionate care.
Organisations that contain anxiety do not mount defences but are receptive and accepting and try to make sense of anxiety with, solidarity, support and educational supervision. They understand that anxiety is part and parcel of human nature in general and healthcare in particular. Their emphasis is on learning and improvement more so than measurement and control.
Understand that anxiety is a virtue, in the Aristotelian sense – we all have it, we can have too little or too much, and it brings with it conscientiousness, emotional intelligence and empathy which patients need.
Appreciate the relationships between uncertainty and humility. Awareness that in medicine there is very often uncertainty about diagnosis, prognosis and the best treatment should lead us to conceive of humility on as equal a footing as any of the other pillars of medical ethics, beneficence, non-malevolence, justice and autonomy.
In all animals anxiety drives the fight or flight response, but humans uniquely can choose to do neither. Philosopher Søren Kierkegaard wrote in 1844, “If man were a beast or an angel, he would not be able to be in anxiety. Since he is both beast and angel, he can be in anxiety, and the greater the anxiety the greater the man. He who has learned rightly to be in anxiety has learned the most important thing.”
I hope that after today we can be better in anxiety,
Henry E. Sigerist: Medical Historian and Social Visionary
Medicine and society:
Medicine and science in the media:
Doctors and patients:
Medicine and politics:
Pregnancy and childbirth:
An examination of who controls childbirth and who controls doctors
Food, politics and health:
Poverty and medicine:
Pain: history and culture:
Medicine and History