In 1996 I was newly qualified. I had completed my training as a doctor without being taught anything about chronic pain. As a junior doctor, how to do medicine was my overwhelming concern and this mostly meant knowing the rules and the protocols and sticking to them. Samuel Shem’s book the House of God was our guide to when and how to break rules to protect ourselves from the toxic culture, our seniors and the patients. The House of God’s Golden Rule was ‘do as much nothing as possible’ which was an explicit acknowledgement that hospitals are dangerous places where all interventions are risky, but almost any intervention can be justified, meaning many patients would be better off if they were sent home, perhaps with some extra social care rather than risk medical interference. Patients were referred to as GOMERS which stands for Get out of my emergency room. Patients with chronic pain encountered in Emergency rooms or A&E departments were GOMERS and we did what we could to turf them. Turfing means sending them home or referring them to another specialty. This being the mid 90’s the department had a cupboard full of little boxes of Tramadol kindly provided by a pharma rep. and it was a quick and easy way to send someone home, with a new potent painkilling drug that we had been assured was more effective, safer and less addictive than pretty much anything else at that time. It made our lives easier and so we didn’t question it. Our involvement with patients with chronic pain was so transient that we had little sense of the chronicity of their pain and even less of their lives.
As I rotated through different hospital specialties there were a few occasions where I encountered patients with chronic pain. I remember a woman whose stomach was criss-crossed with surgical scars where surgeons had repeatedly explored her abdomen and pelvis looking for the cause of her pain, until eventually the internal scarring became a cause of pain in and of itself and they stopped looking.
Patients like this were frustrating to their surgeons, to put it mildly, but more bewildering than frustrating to me because I felt less responsibility for their recovery. I think that this is one reason why patients with chronic pain sometimes experience more empathy and sympathy from medical students and junior doctors than experienced clinicians. Once we start to feel more responsible for our patients’ recovery things get more complicated. People become doctors because they want to make a difference by relieving suffering. Writing in 1959 about doctor-patient and nurse-patient relationships, the psychoanalyst Thomas Main, noted that if this desire to relieve suffering is not satisfied, “they tend to become more passionate, to be reinforced with aggression and then to deteriorate in maturity, with sadism invading the situation.” I knew a gynaecologist whose attitude towards her outpatients – about 50% of whom have unexplained pelvic pain, verged on the vengeful. Writing about nurses caring for patients in pain Main noted that “[she] would only give a sedation at the moment when she had reached the limit of her human resources and was no longer able to stand the patients problems without impatience, anxiety, guilt, anger, or despair”. The use of sedatives went up, the more understaffed and stressed the nurses were. These days we know that GPs prescribe more opiates where there are fewer GPs, less continuity, and shorter appointments. In these situations, medications are more available and dependable than doctors.
For many doctors, especially those working in hospitals, or those in general practice without the long-view, favourite patients are often those who massage their ego, whose diagnosis or treatment is a bit of a challenge, who recover from serious illness, ideally after a bit of a battle, and are grateful for it. Patients with chronic pain are rarely like this because recovery is not in their repertoire and they are usually as frustrated by their lack of progress as their doctors. On those rare occasions when they do recover, they are among doctors’ most favourite of all because the battle has been so long and hard-fought and also involves an interesting quest or journey.
Medical sociologist Arthur Frank described three kinds of illness narratives. The classic restitution narrative follows a satisfying illness-diagnosis-treatment-recovery trajectory. A quest narrative involves a coming-to-terms with a long-term condition and a journey of acceptance; “Quest stories carry the unavoidable message the restitution narrative will, one day, prove inadequate”. A doctor likes a patient on a quest because they’re no longer pestering them for a cure but sharing updates from their travels. The third kind of narrative, and the one that typifies chronic pain, is chaos. People live in chaos, but, says Frank, “chaos in its purest form cannot be told” Chaos tears up narrative. Listening to patients in chaos is hard to follow, there’s a very real sense of going nowhere. Philosopher John Berger wrote that patients who suffered without a diagnosis couldn’t separate their illness from themselves, but a diagnosis gave their illness an independent existence so that doctor and patient could struggle together against it. Chronic pain is a kind of diagnosis without diagnosis, there’s nothing to show on the scans or blood tests. In chaos, there is no thing to be treated, or cut away, there’s nothing like cancer to provide an explanation, attract sympathy or entitle benefits. Patients in chaos can be deeply frustrating for doctors because they’re repeatedly confronted by suffering and reminded of their failure to make a difference. Writer Hilary Mantel, who suffered with chronic pain wrote of her,
“concern with the doctors and nurses who have to deal with patients who are in pain, I think it must be a depressing and unsettling business unless you are well-trained and supported.”
And of course we are not well trained in chronic pain and we’re even less well supported. Like Thomas Main 50 years before, she experienced that frustrated medics can be callous.
A lot is made of studies that show that medical students lose their empathy as they go through medical education. This is because they learn to listen before they learn to diagnose and they learn to diagnose before they learn to treat. By the end of their training they listen selectively, if at all, mostly to make a diagnosis and set up the treatment protocol as quickly as possible. But as students, to begin with at least, they listen without judgement, without steering the conversation towards a diagnostic end point. Being under no pressure to make a diagnosis or relieve their patients’ symptoms, and given much more time than doctors, patients are often more at ease with students and in my experience, rate them highly for listening. The experience of being seen and heard is validation – and the importance of validation is the most consistent finding of all the studies looking at the experiences of patients with chronic pain in their interactions with medical professionals.
In the documentary, Cracked Up, Actor and comedian Darrell Hammond described trauma as ‘not being seen or heard’. Invalidation from healthcare professionals is traumatic, worsening the isolation, shame and self-doubt that so often accompany chronic pain. One question doctor and patient may have, but rarely admit is, ‘what role is trauma playing here?’ It’s not a question of root causes, but if I can stick to the analogy of actors depicting chronic pain, there will be many, and trauma will play their role, alongside a cast of others including the careless driver, the anxious mother, and the incident with the stepladder on the ice. Potent as a medical student’s validation may be, validation that comes from someone more powerful than the patient has an added potency, and where there has been childhood trauma the impact of validation from a powerful adult can be revolutionary. Clinical judgements are inescapably moral because some patients are found more worthy of medical care and concern than others. The fear of being labelled or treated as a fraudster or malingerer is ever present. Medical sociologist Daniel Goldberg found that chronic pain sufferers rate the alienation they experience from their physicians as qualitatively worse than alienation from loved ones.
If not being believed is one concern that patients have, another is that of being of little interest to their doctors. Anatole Broyard wrote of his duty to be an interesting patient,
“I would also like a doctor who enjoyed me. I want to be a good story for him, to give him some of my art in exchange for his. If a patient expects a doctor to be interested in him, he ought to try to be interesting. When he shows nothing but the coarser forms of anxiety, it’s only natural for the doctor to feel an aversion. There is an etiquette to being sick. I never act sick with my doctor.”
Broyard was a writer, a critic, an American who had enjoyed robust health until he got prostate cancer. He was an interesting guy, who played with language for a living. Imagine if you’re uneducated, female, dependent on others to interpret for you, and suffering from an illness that’s hard to describe, hard to diagnose and unsatisfactory to treat. Most of my white, English-speaking patients know of the importance of giving a little to their doctor to sustain my interest, and make me feel as if I’m making a difference. They give a little, but also remind me that they don’t dare tell me how bad it really is, they don’t like to disappoint me … too much. It’s not unusual for them to admit that they’ve been afraid to tell me just how awful it has been, what terrible things they’ve sunk to in order to cope, how acutely suicidal they’ve been. But my Turkish and Bengali patients appear to believe that the best way to keep me engaged is to insist, every time they see me, that everything hurts more and nothing works, apparently unaware of Thomas Main’s warning that a despondent, frustrated doctor will at best lose interest and at worst become mean and sadistic. A doctor wants at least a little bit of a quest in their patient’s chronic pain narrative to sustain their interest. Frank understood the challenge for doctors was how to honour the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism”.
How I respond to patients with chronic pain has changed over the years. John Berger wrote about Doctor Sassall in his book, A Fortunate Man; “Thriving on medical emergencies, impatient with non-specific symptoms and the absence of clear-cut physical diagnoses and underlying pathology, he moves gradually towards and empathic listening and companionship with his patients and their families, striving to recognise who they are and the meaning of their illness to them. Physical and psychological intimacy is central to his relationship to his patients”.
These days I have consultations where patients come in with chronic pain and leave, after a time, with less pain that is a little easier to bear. This depends on my availability, or presence, which I would like to conclude this essay exploring.
Anatole Broyard wrote,
“I see no reason or need for my doctor to love me – nor would I expect him to suffer with me. I wouldn’t demand a lot of my doctor’s time; I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness for each man is ill in his own way”
And American family doctor, David Loxterkamp writes,
“The barriers to ‘being there’ for our patients are not bound up in red tape … they lie in our presence of mind, our inclination to linger and listen, our rigour to pursue some grasp of the patient’s narrative and thereby catch a subtle signal for help”
There are subconscious barriers to presence. At a physiological level, openness in the presence of another involves neuroception – a neurological mirroring with hypervigilance, tingling, and hypersensitivity, raised blood pressure and heart rate, shallower breathing, tightening of skeletal muscle and slowing of digestion; all subtle changes, but enough in total to create an unease and a desire to bring the consultation to an end, perhaps with another referral, prescription or investigation, anything to buy some time before the patient can come back. Other strategies are for the doctor to stop listening and start pain-splaining, or offering advice. At a psychological level the doctor lacks confidence in his ability to negotiate the electrically charged boundaries around empathy; poised between gift and invasion – between seeing someone as they are and between cracking them open. Chronic pain is like a wound. You can’t change whatever it was that caused the wound, but to help it heal, you may need to cut away the scar tissue so that it heals from the bottom up. Historian of pain, Joanna Bourke, reflecting on her own painful experiences with doctors, observed that it wasn’t that pain was hard to talk about, so much as it pains others to listen to people talk about pain. Doctors have a tendency to dissociate when patients talk about pain, and Broyard feared that his doctor would lose interest and wrote of his need to be an interesting patient and not to act sick. But there is, at the same time, an unspoken need to be seen, beneath the demands for pain relief or another MRI scan there is panic and aloneness. I have on the wall of my consulting room a picture of ‘A woman with attitude’ – a reference to all the women I see who remind me of this whenever they come in. Empathy is an art where the doctor can acknowledge their patients’ capability, vulnerability, courage and terror at the same time as they appreciate the humour that so often accompanies serious illness.
In concluding, doctors are poorly prepared to take care of patients with chronic pain, education is improving, but they are under-supported and there are few organisational or financial incentives for the long-term work care that patients with chronic pain need. If you find a good one, then commit to continuity and nurture the relationship. Find one that believes you but will challenge your shame and self-blame, and be interested enough to explore your stories with you rather than accept them at face value. You will want one who can appreciate the dark and the light side of suffering. Your doctor needs to be accessible and boundaried – better five minutes of whole-hearted presence than a half-hearted half-hour. Above all find one that believes that things can get better, not with false hope or through futile interventions, but by perseverance and imagination.