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Reflections on medical culture and the Bawa Garba case

For a background to the case – see this excellent BBC report by Dr Deborah Cohen

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’.

Relationship centred care Dr Jonathon Tomlinson blog

Defining Patient Centred care New England Journal of Medicine

A New Kind of Doctor: Professional Accountability. Dr Julian Tudor Hart

Managing the threat to reflective writing. Dr John Launer

Book list

A list of books about medicine, society and more – posted here from one of my medical education wikispaces. Please send other suggestions! My intention is to keep adding to it.
Most of these books i’ve read. Many of them are old. Although I’ve linked them to Amazon for your convenience, i’d recommend you try your library (if you still have one), your local independent bookshop or second-hand from abebooks

General:
Henry E. Sigerist: Medical Historian and Social Visionary

  • All of his books are very highly recommended, especially Medicine and Human Welfare
  • His book ‘Man and Medicine’ was written for medical students.

Medicine and society:

Medicine and science in the media:

The media:

Hoxton history:

General practice:

Doctors and patients:

Medicine and politics:

Markets

Pregnancy and childbirth:

An examination of who controls childbirth and who controls doctors

Food, politics and health:

Health promotion

Poverty and medicine:

Pain: history and culture:

Pharma

Medicalisation

Dying

Mental health:

Medical ethics

Medicine and History

Misc

Dr Jonathan Tomlinson Law And Justice Interview – SoundCloud

An interview with Jane Mulcahy about the ways childhood trauma manifests in adults who present to healthcare and criminal justice

Listen to Dr Jonathan Tomlinson Law And Justice Interview by Jane Mulcahy #np on #SoundCloud

The Adverse Childhood Experiences evidence base–a wake up call to radically redesign Children’s Mental Health Services.

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

We need to talk about Children's Mental Health

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…

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What happens to empathy in medical education?

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”

Mother Teresa

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.

In conclusion.

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.

Trauma and the self

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.

Trauma fragments the self – a brilliant, short graphic novel.

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.

 

Trauma and testimony

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.

Responsiblity

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.

Links:

The Language of Trauma – brilliant graphic novel describing this blog https://floridareview.cah.ucf.edu/article/the-language-of-trauma/

On Language and Psychiatry. Dariusz Galasiński http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(18)30040-3/fulltext

How neoliberalism is damaging your mental health – The Conversation http://theconversation.com/how-neoliberalism-is-damaging-your-mental-health-90565

As a psychologist I see the fantasy of neoliberal values having a devastating effect on mental health treatment Jay Watts – Independent http://www.independent.co.uk/voices/mental-health-treatment-tory-government-nhs-funding-access-work-benefits-a8037331.html

Mental illness and the welfare state David Bell Centre for Health and the Public Interest https://chpi.org.uk/wp-content/uploads/2013/12/David-Bell-analysis-Mental-illness-and-its-treatment-today.pdf