Keynote for the Everyday Ethical Dilemmas in Healthcare conference 2016
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,
Scott Stossell: My Age of Anxiety: Fear, Hope Dread and the Search for Peace of Mind
Isabel Menzies Lyth: Social Systems as Defences against Anxiety
Slavoj Žižek: ‘You may!’
Clinical Uncertainty in Primary care: The Challenge of Collaborative Engagement.