How many speed bumps?
- The Story of Pain: From Prayer to Painkillers by Joanna Bourke
Oxford, 396 pp, £20.00, June 2014, ISBN 978 0 19 968942 2
I had just seen a man about his headaches and was about to call someone about her backache when the receptionist beckoned me over. ‘Mrs Lagnari is on the phone,’ she mouthed in a stage whisper. ‘Her husband is in terrible pain. Will you go and see him?’
During their training physicians are urged not to jump to conclusions. They’re supposed to wait until they’ve worked through a battery of questions and prodded the patient all over before they draw up a list of potential diagnoses. Even so, I couldn’t help wondering why Mr Lagnari’s pain was worse. He had advanced pancreatic cancer, which had spread to the liver. His tumour might have lurched in size, I thought, pressing on and infiltrating the nerves around the pancreas. The metastases growing in his liver could have begun stretching the liver’s capsule; ‘capsular pain’ can be frustratingly difficult to control. I’d seen him only the week before and increased the dose of his opiate medication; he might have developed resistance to the new dose already. Perhaps a deep vein thrombosis had formed in his legs – a well-known complication of a tumour like his. Or his pain might be existential: Mr Lagnari knew that he was dying.
His wife and son opened the door before I had a chance to ring the bell. They made way for me in the tiny vestibule, their faces pinched with worry. ‘He’s more settled now,’ the son whispered, anxious that his father might overhear, ‘but he thinks his number’s up.’ I nodded: his impressions might be more useful than whatever Mr Lagnari would tell me.
He was leaning forward in bed, propped up on a few pillows, his face more withered and pale than it had been the week before. He winced at the smallest movement, and held his hands over the pit of his stomach as if protecting it. The room was just wider than his double bed. He raised one arm to greet me, and with the other switched off the television.
‘I took some of that stuff you gave me,’ he said, ‘and it’s a bit better. No need to fuss.’ But he was gritting his teeth. He was wearing Fentanyl patches, which soaked an opiate through his skin directly into the bloodstream, but I’d also given him a bottle of liquid morphine to use in the moments when the patches weren’t enough.
‘What does it feel like?’
‘Like a burning, horrible pain, coming up from here’ – he bunched his fingers over his solar plexus – ‘and into here’: he spread the fingers out wide and grazed them over his sternum and the right side of his chest.
‘Is it worse if you breathe in?’ I asked.
‘A bit,’ he said.
‘Any pain or swelling in your legs?’ He shook his head, and I lifted up the duvet to check his calves: they too were withered and pale, no sign of thrombosis.
I sat down on the edge of the bed. ‘Anything you can do to make it go away?’
‘If I keep on sitting forward it’s a bit better.’
I examined his belly, pushing tentatively down over his stomach, then pressed my hand into the hollow beneath his right rib-cage while he breathed deeply in and out. His liver didn’t feel any larger or more tender than when I’d last examined him a couple of weeks earlier.
‘So what do you think?’ he asked, holding my gaze. He had been straining to keep things light, as if we were bantering about the weather. But now he looked down, smoothing the duvet between his leg and the depression in the mattress where I sat, and asked: ‘Am I dying?’
I’m not afraid of discussing death; what I worry about is misjudging the readiness of patients to hear an honest opinion. ‘Well it’s getting closer,’ I said. ‘It’s spreading in your liver … but I really can’t give you a time. It could be days, it could be weeks.’
‘But not months?’
‘I wish I could tell you … We could send you back to the hospital for a scan,’ I said, deliberately trailing off, watching his face to see whether he’d clutch at the chance, any chance at all, to delay what was happening to him. He knew what I was hinting at. There was silence for a few moments. ‘No, I’m finished with all that,’ he said. ‘I’ll stay here.’
‘We could switch your medication from the patches to injections,’ I said. ‘They are more effective in many ways, though they might make you more sleepy.’
‘That sounds good,’ he said, relieved we were back to talking about managing his pain, and not his death.
I went back to the clinic. There were six or seven more patients to see, an hour’s worth of paperwork, then more housecalls. Afterwards, I went to check on Mr Lagnari. A nurse had set him up with a drip of morphine, mild sedatives and anti-sickness medication, and he was asleep. ‘The priest was in for an hour,’ his daughter said, ‘and he seems much more settled now.’
That was Tuesday evening; by Thursday morning he was dead.
The priest and I cover much the same patch of Edinburgh and many of my patients are also his parishioners. He avoids giving advice on medication. But even as late as the second half of the 20th century some Roman Catholic theologians would have denied Mr Lagnari morphine for pain, because he seemed so close to death. In New Problems in Medical Ethics (1956), Peter Flood, a Benedictine, stated that Christians in pain should accept suffering ‘as permitted by God for our betterment’. Pain was a ‘privilege, in union with the redemptive sufferings of Christ’. It was essential that a physician tell people they might be close to death, even if they weren’t sure, so that the patient’s opportunity for repentance wasn’t squandered and their admission to heaven put at risk. Pain relief might be administered in small doses, except to those such as lapsed Catholics – the fear being that even small doses might prevent them from returning to the religion of their baptism. In the same volume Eugene Tesson, a Jesuit, sanctioned physicians to administer pain relief only to the dying who had ‘made an act of submission to the Divine’ and those ‘in danger of falling into despair and blaspheming the goodness of God’.
Such opinions are a reminder that the expression and understanding of pain varies not just between different centuries and cultures, but between the different patients and practitioners charged with addressing it. Not only that, but an individual can experience pain differently from day to day, week to week, year to year. The meanings of pain are limitless. To compile a comprehensive history of pain, both from the perspective of sufferers and those in a position to relieve it, would seem impossible. In The Story of Pain, Joanna Bourke restricts her inquiry for the most part to the period between the mid-18th and mid-20th centuries, and looks only at literature in English. She examines the way pain isolates sufferers; its description by patients and clinicians; whether or not it indicates an underlying pathology; how it is related to religious ideas; and how both sufferers and physicians have responded to it with varying degrees of compassion, comprehension and success.
‘Everyone who is born holds dual citizenship,’ Susan Sontag wrote, ‘in the kingdom of the well and in the kingdom of the sick.’ John Donne believed that illness is the kingdom, that it steals in and corrupts our lives: ‘The disease hath established a Kingdome, an Empire in mee, and will have certaine Arcana Imperii, secrets of State, by which it will proceed.’ Both perspectives are true. Mr Lagnari first came to see me with a persistent, grumbling stomachache, which got worse after food. He’d had a gastroscopy not too long before which had shown a healthy stomach, and the ultrasound scan and blood tests I arranged were normal. I tried antacids and antispasmodic medications, but I was anxious that his pain might not be coming from his stomach, liver or gall bladder, but from his pancreas (which is too deep to show on most ultrasound scans), so I sent him for a CT scan. The scan showed that he had an advanced, inoperable tumour. It was as if his passport had just been stamped for the kingdom of the sick. Instead of a bellyache, he felt a ‘gnawing’ deep in his guts: ‘It’s eating at me,’ he said. His pain now had meaning, but a meaning so appalling that he began to withdraw; his family gathered round him, but he asked them to leave him in peace. A study in the 1990s found that nearly two-thirds of sufferers from metastatic cancer, in hiding themselves away, also hid the true level of their pain from loved ones so as not to upset them. It was difficult to get Mr Lagnari to admit to how much pain he was in, because in his mind if his pain was worse, it meant his cancer had progressed.
Sontag wrote Illness as Metaphor while being treated for breast cancer. Metaphors of illness, she argued, are often stigmatising and add to the suffering of the ill. But she knew that metaphors can be liberating, too, in allowing us to define the nebulous and to extend our meanings. Sontag’s essay is itself paradoxically crammed with metaphors: ‘TB makes the body transparent,’ ‘Illness is the night-side of life’ and so on. In describing pain we’re obliged to reach for such metaphors; how else can we give expression to inner experience? ‘Stabbing’, ‘aching’, ‘throbbing’, ‘squeezing’, ‘burning’, ‘lancinating’ or ‘ripping’: medical students are taught a catalogue of terms in the belief that pinpointing a pain’s ‘character’ will help diagnose its cause. But this process is not objective: Mr Lagnari’s tumour didn’t change with his knowledge that he had cancer, but the meaning of the pain he had did, and with that shift in meaning the way he described his pain changed.
We learn many of these metaphors in childhood; I have heard a child describe pins and needles in his foot by saying ‘my foot is fizzing,’ but after he was told ‘it’s not fizzing; it’s pins and needles,’ he rarely used that magnificent metaphor again. The metaphors are gendered – men are more likely to reach for parallels between pain and violence – and culturally determined. The McGill Pain Questionnaire was developed in 1971 as an objective way of assessing levels of pain, but was found to be untranslatable. It contains, for example, a suggestion linking pain to feelings of punishment, which Finns, among others, find incomprehensible. And how could the Ainu of Japan use the Anglocentric questionnaire to express the qualitative difference between ‘bear’, ‘woodpecker’, ‘octopus’ and ‘crab’ headaches’? (It turns out those associated with aquatic animals come with a chill.) ‘To the extent that culture and language may actually affect perception, thought and cognition,’ Horacio Fabrega and Stephen Tyma wrote in 1976, ‘then to that extent they may also affect the actual experience of pain.’ In the West, when the humoral theory of bodily function was extant, pains were often described as migratory, like the humours themselves. Steam engines brought metaphors of breakdown and repair, and germ theory led to elaborate metaphors of invasion and battle.
In an article from 1917 a doctor in Iowa wrote that pain, to the ‘alert physician’, was ‘what the compass is to the mariner’. This confidence in the reliability of pain as a diagnostic aid is what’s behind the ten criteria I was taught to consider as a medical student. What is the site of the pain, its location in the body? What is its severity (a patient’s estimate on a scale of one to ten, say, can make a useful basis for a day to day comparison)? The character of a pain is the metaphorical description of how it feels: ‘burning’ might indicate acid reflux, ‘cramping’ could be colic etc. Radiation refers to the displacement of a pain elsewhere in the body (the pain of a heart attack, for example, often moves to the jaw and left arm). Timing could refer to the periodicity of a cramp, or to the time of day a pain is experienced most acutely (the headache associated with a brain tumour, for example, is worse the longer you’ve been lying down, and so often wakes people up). Onset refers to the way a pain comes on; the pain of a cerebral haemorrhage, for instance, is so sudden it’s often compared to being kicked by a horse, as is acute orgasmic headache, or coital cephalgia, with which it may be confused. The activity provoking the pain would help to establish whether the haemorrhage or the cephalgia was more likely. Exacerbating factors could be leaning forwards, which worsens headache in sinusitis; but leaning forwards can also be a relieving factor in pancreatic cancer (as it takes pressure off the pancreas). Associated symptoms could be the nausea that often accompanies a heart attack, or the visual disruption that comes with a migraine.
Going through this list is undoubtedly helpful in reaching a diagnosis, though it shouldn’t take precedence over letting someone tell their own story. The enthusiasm of doctors to categorise both patients and illnesses can lead to an obsession with pain descriptions, even though we now recognise that the link between pain and diagnosis is far from direct. A recent study estimated that in between 10 and 20 per cent of cases, there is no link between pain symptoms and the underlying disease; in some fields, such as gynaecology and neurology, the figure was as high as 70 per cent. This makes sense: thankfully not everyone who attends my clinic with a deep, central stomachache turns out to have pancreatic cancer. Sometimes they have gallstones, sometimes gastritis, sometimes anxiety, and sometimes none of these. The lack of correlation can make some doctors cynical: another recent study showed that physicians estimate ‘malingering rates’ among chronic pain patients at 30 or 40 per cent.
The McGill Pain Questionnaire and others like it aim to create a more objective way of assessing pain, but it was formulated for a limited demographic of white, middle-class North Americans. Supplying patients with a list of suggestions often skews their description, and indeed their perception, of the pain they are feeling. If we can’t rely on language, some physicians have argued, perhaps we can rely on patients’ non-verbal gestures, expressions and reactions to being examined instead. It’s often possible to recognise the pain of severe appendicitis: the patient walks tentatively, cradling their hands over the area of the appendix and straining every muscle to prevent sudden jolts to the abdomen. (I worked with a surgeon who diagnosed appendicitis by asking: ‘How many speed bumps are there in the hospital car park?’ Those with advanced appendicitis invariably knew the answer, as each bump had been so painful.) Similarly a drawn face and hunted, trapped eyes will tell you that is someone overwhelmed by panic. Mr Lagnari’s facial expression, just a couple of days before he died, and the way he leant forward, gave me a wealth of information about the way he was feeling. But these gestures are only helpful if present: their absence doesn’t imply the absence of pain. Presumptions about the reliability of gestures has given some doctors absurd levels of confidence about their accuracy in assessing distress.
Gauging pain in children has been a perennial problem, and not only in children who can’t talk; even verbal children, when asked about the way they feel, often agree to or deny whatever is put to them. As a result, children have long been assessed on the basis of their gestures. Not all such diagnoses are reliable. ‘Pain of the head induces a contracted brow,’ the 1835 edition of Treatise on the Diseases of Children advised. ‘Pain in the belly occasions the elevation of the upper lip; whilst pain in the chest is chiefly denoted by sharpness of the nostrils.’ I can remember being shown a series of slides, taken as recently (I think) as the 1970s, showing a child suffocating to death through epiglottitis – an infection that causes swelling in the throat. The images showed the child increasingly purple-faced, mouth agape with terror in her eyes; in the last, she was slumped dead. The lecturer told us that the slides were unethical and wouldn’t have been made today, but that he felt we should see them so we’d recognise the urgency of paediatric emergencies.
The debate in the 19th and early 20th centuries over how best to interpret the expressions of children is unexpected in that throughout the period many questioned whether children felt pain at all. It was a widely held view that howls of pain were mere exhibitions of a reflex, not only in children but also in women and non-white racial groups. But, paradoxically, in 1896 a medical student writing in the London Hospital Gazette claimed that foreigners of ‘doubtful nationality’ such as ‘Jews, Turks and Heretics’ cringed with pain as they were treated in an East London surgery, while a ‘fine British working man’ was ‘silent – motionless – till all is over’. At the same time a surgeon in the US claimed that ‘the negro’ possessed a ‘lessened sensibility of his nervous system’. Yet how could white men claim for themselves the fortitude of being able to bear pain without complaint, when black people had displayed such resilience during centuries of slavery? The contradiction was resolved by attributing to Northern Europeans an uncommonly developed sensitivity to pain, but also a heightened ability to endure it. As late as 1959 the British Medical Journal published a paper from the Melbourne University Dental School which purported to show that the bluer the eyes the greater the capacity to withstand pain: ‘As the colour went through blue-grey, green, hazel, light brown and dark brown so the reaction to pain increased on the average.’
Similar prejudices permeated discussions of how much pain was felt by women as compared to men. Francis Galton argued that European women may seem more sensitive than European men, but that this characteristic, which in the man would imply superiority over other racial groups, did not mean women were superior. On the contrary, their increased sensitivity came from a ‘nervous irritability’ rather than the ‘more delicate powers of discrimination’ which elevated the male. The white hegemony was safe for men, and only men.
White men’s acute sensitivity hasn’t, it seems, made them sympathetic surgeons or physicians. The insensitivity of doctors to suffering is a commonplace in Western culture. Surgeons in particular had to be unusually pitiless before the introduction of anaesthetics, or they wouldn’t have been able to carry out their work (Charles Darwin quit medical school because he couldn’t bear to watch operations). During the fad for phrenology there was speculation that surgeons, in common with butchers, had a large ‘Organ of Destructiveness’ visible as a lump above the ears, which facilitated their capacity to inflict pain without compunction. There are some principles in man’s nature, Adam Smith writes in the first few lines of The Theory of Moral Sentiments (1759) ‘which interest him in the fortune of others, and render their happiness necessary to him, though he derives nothing from it except the pleasure of seeing it’. Even today physicians testify to unusually high levels of job satisfaction, but working for happiness in others doesn’t necessarily make you more sympathetic to their suffering. Physicians have always been keen to be thought of as sympathetic, especially in the days when most illnesses had no effective treatments, as a sympathetic attitude was often all they had to offer. John Gregory, a physician writing a few years after The Theory of Moral Sentiments was published, argued that a sympathetic attitude ‘naturally engages the affection and confidence of a patient, which, in many cases, is of the utmost consequence to his recovery … a patient feels his approach like that of a guardian angel ministering to his relief.’ A hundred years later, by which time doctors considered themselves ‘men of science’, sympathy had come to be seen as unmanly, something for nurses not doctors.
We do better now, we like to think, but doctors have shown themselves to be hopeless at assessing pain; some studies have even shown that the more experienced the clinicians, the worse they are at gauging their patients’ pain. ‘Constant association with physical and mental disease, the incessant change and variety of patients, and the stimulus of competition and criticism blunt or harden the medical mind until everything presents itself in a purely professional and unsentimental light,’ a nurse at Melbourne Children’s Hospital said more than a hundred years ago. Neuroscientists believe that to witness someone in pain has a similar neural effect as being in pain oneself. If that’s so, then it might be expected that the capacity for empathy would diminish in professionals who work daily with people in pain; it would, not least, be a matter of self-protection.
Once Mr Lagnari knew he had cancer, the rate at which his pain worsened accelerated. Of course his tumour was growing, as were the metastases in his liver, but it was also his perception that he’d been invaded that quickened his pain. At first we held it off with a combination of anti-inflammatory drugs (which can be effective for the pain of a stretching liver) as well as codeine with paracetamol, which dampened the pain in his gut. He checked in with me every couple of weeks, and his prescribed dose slowly increased until it hit the maximum recommended. When his pain worsened again I told him we should consider switching to morphine. It’s effective, easily available and there is no maximum dose. It can cause constipation and nausea, but these can be treated; the only remaining drawback is how addictive it can be. For Mr Lagnari this was irrelevant, because he was going to be taking it until he died. Perhaps that’s why he was so reluctant to make the change. ‘Morphine?’ he said, raising his eyebrows. ‘Are things that bad?’
His was a common anxiety. In 1996 two researchers working in the East End of London found a widespread belief that ‘pain belonged to death and, if it could be managed without artificial aid, or with less, it meant that death was not so near.’ Mr Lagnari wasn’t ready to be in control of his own pain; he might be in the kingdom of the sick, but he didn’t want to be so deep in it that he couldn’t manage without ‘ordinary’ medicines. In time, his pain was what made him overcome his reluctance to take morphine.
Effective anaesthetics have been known since around 1800, and the beneficial effects of morphine have been familiar for much longer. Why did anaesthetics take so long to become widespread, and why do both clinicians and sufferers continue to undertreat pain? By 1799 Humphry Davy was inviting his Bristol circle of poets and fellow scientists to parties where they’d take turns inhaling nitrous oxide – laughing gas. ‘Such a gas has Davy discovered, the gaseous oxide!’ Robert Southey wrote to his brother, ‘I am sure the air in heaven must be this wonder-working gas of delight.’ Davy considered whether the gas might be useful in surgery, but the power and tenacity of a humoral vision of the body made him think it would be dangerous: any loss of blood in surgery would, he thought, render the anaesthetic useless. A dualistic vision was prevalent at the time: body and soul were held together through ‘nervous irritability’; any numbing of nerves risked death. Later in the 19th century, as the understanding of physiology improved, these fears were allayed, but surgeons persisted in avoiding anaesthetics. The belief remained that pain served a positive function, that dulling it would promote unnecessary procedures, and even that surgeons’ steely-nerved reputation might be forfeit if patients were able to lie motionless throughout operations. There were public anxieties too. Some worried that doctors would take sexual advantage of their patients when they were under anaesthetic, and there was the creeping unease that some divine law was being violated: had Genesis not insisted that life entailed suffering?
When Thomas ‘Stonewall’ Jackson, the Confederate general, had his arm amputated in 1863, he refused chloroform: ‘I have always thought it wrong to administer chloroform, in cases where there is a probability of immediate death … I should dislike above all things to enter eternity in such a condition.’ Catholic concerns about pain relief in terminal care notwithstanding, anxieties like Jackson’s receded among physicians and the wider public in the 20th century. In the 1920s, Clifford Hoyle of the Brompton Hospital wrote about the Brompton Cocktail, a mixture of morphine and cocaine which he admitted would hasten death: ‘The dying man,’ he said, ‘ought to reach unconsciousness as leniently, and if necessary as quickly as possible.’ He also advocated treating existential anguish with whisky (working in a hospital in the Highlands I was often asked to prescribe double whiskies on the medication chart), as well as offering relaxants and sleeping pills to relatives around the deathbed – a practice still widely observed.
Although painkillers are among the most profitable of drugs, many types of pain remain difficult to treat effectively, and studies show that clinicians continue to underestimate and undertreat it, with women, children and the elderly the most likely to be neglected. In healthcare systems, such as that in the United States, where the quality of healthcare is substantially related to a patient’s financial resources, there are startling levels of undertreatment. ‘Poor people can’t expect to drive a Rolls-Royce or to eat at a fine French restaurant,’ one anaesthesiologist said, ‘so why should they expect to receive the Cadillac of analgesics for free?’ This is a question about the way we choose to arrange society, not just healthcare. One might argue that driving a Cadillac is a luxury, whereas pain relief in a country that can afford it should be considered a right.
This problem isn’t confined to the US; in a small hospital in India where I once worked there was no morphine available. India is one of the world’s top three producers of the drug, but the bulk of it was kept for the lucrative foreign market. This illustrates Bourke’s concluding point, which is that simply educating clinicians to recognise pain in all its physical and existential dimensions isn’t enough: ‘Decisions about what constitutes “effective relief” are unstable; and creating equitable systems of distribution requires a formidable overhaul of entire politico-economic systems.’ The Cartesian model of pain is plain wrong: ‘Pain does not emerge naturally from physiological processes, but in negotiation with social worlds,’ she writes, and it is through a renegotiation of the way we create our social world that it must be approached.
Bourke’s book is a magnificent feat of research: she has consulted fifty different archives, and cites more than a thousand original sources. The Story of Pain throws a good deal of light on the way we have conceptualised pain over the last three hundred years, the way we have managed it and, very often, mismanaged it. She admits at the outset that the ‘confident tones of a Victorian patriarch’ present in much of her material tend to irritate her. But her own tone is often mocking and adversarial, which gets in the way of the history she has to tell. And although she acknowledges the impossibility of separating physical pain from the emotional or existential, her book pays disappointingly little attention to the way these more intangible forms of distress have been attended to over the centuries.
Whether it takes the form of anxiety about death, questions over life’s purpose, or mental anguish (what Jenny Diski called ‘being intolerable to oneself’ in the LRB of 6 February), existential pain has been shown in clinical studies to reinforce and worsen the perception of ‘physical’ pain. Doctors may be undertreating physical pain, but they are barely scratching the surface of the other kind. Some will argue that such pain isn’t a doctor’s concern: that psychotherapists, clergy and a more supportive and care-orientated society are needed. As a doctor I’m often asked to tackle both physical and existential pain – I remember attending a church-going Christian who was suffering an acute crisis in her sense of life’s purpose. When I suggested she speak to her clergyman, she replied: ‘I think that sort of thing should be left to the professionals, don’t you?’ If one of my dying patients respects the views of their priest, minister or imam I’m always relieved: it helps to share the burden of exploring existential questions. I work only part-time in my practice, and have between five and six thousand clinical encounters a year. I’d estimate that half of those are about managing pain, in the broadest sense. At less than ten minutes per patient there’s never enough time, and sometimes it is all I can do to listen to the patient, prescribe the right sort of drug and tick the right box on the computer screen for the government’s inspection (‘care’ isn’t care unless it’s entered on a screen). But to do my best for my patients, I need to find a way to manage pain better. As an insight into the roots of medical perspectives on pain, and why we’re often so bad at tackling it, Bourke’s history will help.