The Long Read: Suffering is difficult to describe and impossible to see. So how can doctors tell how much it hurts?
One night in May, my wife sat up in bed and said, Ive got this awful pain just here. She prodded her abdomen and made a face. It feels like somethings really wrong. Woozily noting that it was 2am, I asked what kind of pain it was. Like somethings biting into me and wont stop, she said.
Hold on, I said blearily, help is at hand. I brought her a couple of ibuprofen with some water, which she downed, clutching my hand and waiting for the ache to subside.
An hour later, she was sitting up in bed again, in real distress. Its worse now, she said, really nasty. Can you phone the doctor? Miraculously, the family doctor answered the phone at 3am, listened to her recital of symptoms and concluded, It might be your appendix. Have you had yours taken out? No, she hadnt. It could be appendicitis, he surmised, but if it was dangerous youd be in much worse pain than youre in. Go to the hospital in the morning, but for now, take some paracetamol and try to sleep.
Barely half an hour later, the balloon went up. She was awakened for the third time, but now with a pain so savage and uncontainable it made her howl. The time for murmured assurances and spousal procrastination was over. I rang a local minicab, struggled into my clothes, bundled her into a dressing gown, and we sped to St Marys Paddington at just before 4am.
The flurry of action made the pain subside, if only through distraction, and we sat for hours while doctors brought forms to be filled, took her blood pressure and ran tests. A registrar poked a needle into my wifes wrist and said, Does that hurt? Does that? How about that? before concluding: Impressive. You have a very high pain threshold.
The pain was from pancreatitis, brought on by rogue gallstones that had escaped from her gall bladder and made their way, like fleeing convicts, to a refuge in her pancreas, causing agony. She was given a course of antibiotics and, a month later, had an operation to remove her gall bladder.
Its keyhole surgery, said the surgeon breezily, so youll be back to normal very soon. Some people feel well enough to take the bus home after the operation. His optimism was misplaced. My wife came home the following day filled with painkillers. When they wore off, she writhed with suffering. After three days she rang the specialist, only to be told: Its not the operation thats causing discomfort its the air that was pumped inside you to separate the organs before surgery. Once the operation had proved a success, the surgeons had apparently lost interest in the fallout.
During that period of convalescence, as I watched her grimace and clench her teeth and let slip little cries of anguish until a long regimen of combined ibuprofen and codeine finally conquered the pain, several questions came into my head. Chief among them was: Can anyone in the medical profession talk about pain with any authority? From the family doctor to the surgeon, their remarks and suggestions seemed tentative, generalised, unknowing and potentially dangerous: Was it right for the doctor to tell my wife that her level of pain didnt sound like appendicitis when the doctor didnt know whether she had a high or low pain threshold? Should he have advised her to stay in bed and risk her appendix exploding into peritonitis? How could surgeons predict that patients would feel only discomfort after such an operation when she felt agony an agony that was aggravated by fear that the operation had been a failure?
I also wondered if there were any agreed words that would help a doctor understand the pain felt by a patient. I thought of my father, a GP in the 1960s with an NHS practice in south London, who used to marvel at the colourful pain symptoms he heard: Its like Ive been attacked with a stapler; Like having rabbits running up and down my spine; Its like someones opened a cocktail umbrella in my penis Few of them, he told me, corresponded to the symptoms listed in a medical textbook. So how should he proceed? By guesswork and aspirin?
There seemed to be a chasm of understanding in human discussions of pain. I wanted to find out how the medical profession apprehends pain the language it uses for something thats invisible to the naked eye, that cant be measured except by asking for the sufferers subjective description, and that can be treated only by the use of opium derivatives that go back to the middle ages.
When investigating pain, the basic procedure for clinics everywhere is to give a patient the McGill pain questionnaire. Developed in the 1970s by two scientists, Dr Ronald Melzack and Dr Warren Torgerson, both of McGill University in Montreal, it is still the main tool for measuring pain in clinics worldwide.
Melzack and his colleague Dr Patrick Wall of St Thomas Hospital in London had already galvanised the field of pain research in 1965 with their seminal gate control theory, a ground-breaking explanation of how psychology can affect the bodys perception of pain. In 1984, the pair went on to write Wall and Melzacks Textbook of Pain, the most comprehensive reference work in pain medicine. It has gone through five editions and is currently more than 1,000 pages long.
In the early 1970s, Melzack began to list the words patients used to describe their pain and classified them into three categories: sensory (which included heat, pressure, throbbing or pounding sensations), affective (which related to emotional effects, such as tiring, sickening, gruelling or frightful) and lastly evaluative (evocative of an experience from annoying and troublesome to horrible, unbearable and excruciating).
You dont have to be a linguistic genius to see there are shortcomings in this range of terms. For one thing, some words in the affective and evaluative categories seem interchangeable theres no difference between frightful in the former and horrible in the latter, or between tiring and annoying and all the words share an unfortunate quality of sounding like a duchess complaining about a ball that didnt meet her standards.
But Melzacks grid of suffering formed the basis of what became the McGill pain questionnaire. The patient listens as a list of pain descriptors is read out and has to say whether each word describes their pain and, if so, to rate the intensity of the feeling. The clinicians then look at the questionnaire and put check marks in the appropriate places. This gives the clinician a number, or a percentage figure, to work with in assessing, later, whether a treatment has brought the patients pain down (or up).
A more recent variant is the National Initiative on Pain Controls pain quality assessment scale (PQAS), in which patients are asked to indicate, on a scale of 1 to 10, how intense or sharp, hot, dull, cold, sensitive, tender, itchy, etc their pain has been over the past week.
The trouble with this approach is the imprecision of that scale of 1 to 10, where a 10 would be the most intense pain sensation imaginable. How does a patient imagine the worst pain ever and give their own pain a number? Some men may find it hard to imagine anything more agonising than toothache or a tennis injury. Women who have experienced childbirth may, after that experience, rate everything else as a 3 or 4.
I asked some friends what they thought the worst physical pain might be. Inevitably, they just described nasty things that had happened to them. One man nominated gout. He recalled lying on a sofa, with his gouty foot resting on a pillow, when a visiting aunt passed by; the chiffon scarf she was wearing slipped from her neck and lightly touched his foot. It was unbearable agony.
A brother-in-law nominated post-root-canal toothache unlike muscular or back pain, he said, it couldnt be alleviated by shifting your posture. It was relentless. A male friend confided that a haemorrhoidectomy had left him with irritable bowel syndrome, in which a daily spasm made him feel as if somebody had shoved a stirrup pump up my arse and was pumping furiously. The pain was, he said, boundless, as if it wouldnt stop until I exploded. A woman friend recalled the moment the hem of her husbands trouser leg snagged on her big toe, ripping the nail clean off. She used a musical analogy to explain the effect: Id been through childbirth, Id broken my leg and I recalled them both as low moaning noises, like cellos; the ripped-off nail was excruciating, a great, high, deafening shriek of psychopathic violins, like nothing Id heard or felt before.
It seems a shame that these eloquent descriptions are reduced by the McGill questionnaire to words like throbbing or sharp, but its function is simply to give pain a number a number that will, with luck, be decreased after treatment, when the patient is reassessed.
This procedure doesnt impress Professor Stephen McMahon of the London Pain Consortium, an organisation formed in 2002 to promote internationally competitive research into pain. There are lots of problems that come with trying to measure pain, he says. I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesnt just come with scale a lot or a little it comes with other baggage: how threatening it is, how emotionally disturbing, how it affects your ability to concentrate. The measuring obsession probably comes from the regulators who think that, to understand drugs, you have to show efficacy. And the American Food and Drug Administration dont like quality-of-life assessments; they like hard numbers. So were thrown back on giving it a number and scoring it. Its a bit of a wasted exercise because its only one dimension of pain that were capturing.
Pain can be either acute or chronic, and the words do not (as some people think) mean bad and very bad. Acute pain means a temporary or one-off feeling of discomfort, which is usually treated with drugs; chronic pain persists over time and has to be lived with as a malevolent everyday companion. But because patients build up a resistance to drugs, other forms of treatment must be found for it.
The Pain Management and Neuromodulation Centre at Guys and St Thomas Hospital in central London is the biggest pain centre in Europe. Heading the team there is Dr Adnan Al-Kaisy, who studied medicine at the University of Basrah, Iraq, and later worked in anaesthetics at specialist centres in England, the US and Canada.
Id say that 55 to 60% of our patients suffer from lower back pain, he says. The reason is, simply, that we dont pay attention to the demands life makes on us, the way we sit, stand, walk and so on. We sit for hours in front of a computer, with the body putting heavy pressure on small joints in the back. Al-Kaisy reckons that in the UK the incidence of chronic lower back pain has increased substantially in the last 15 to 20 years, and that the cost in lost working days is about 6 to 7 billion.
Elsewhere the clinic treats those suffering from severe chronic headaches and injuries from accidents that affect the nervous system.
Do they still use the McGill questionnaire? Unfortunately yes, says Al-Kaisy. Its a subjective measurement. But pain can be magnified by a domestic argument or trouble at work, so we try to find out about the patients life their sleeping patterns, their ability to walk and stand, their appetite. Its not just the patients condition, its also their environment.
The challenge is to transform this information into scientific data. Were working with Professor Raymond Lee, chair of Biomechanics at the South Bank University, to see if there can be objective measurement of a patients disability due to pain, he says. Theyre trying to develop a tool, rather like an accelerometer, which will give an accurate impression of how active or disabled they are, and tell us the cause of their pain from the way they sit or stand. Were really keen to get away from just asking the patient how bad their pain is.
Some patients arrive with pains that are far worse than backache and require special treatment. Al-Kaisy describes one patient let us call him Carter who suffered from a terrible condition called ilioinguinal neuralgia, a disorder that produces a severe burning and stabbing pain in the groin. Hed had an operation in the testicular area, and the inguinal nerve had been cut. The pain was excruciating: when he came to us, he was on four or five different medications, opiates with very high dosages, anticonvulsive medication, opioid patches, paracetamol and ibuprofen on top of that. His life was turned upside down, his job was on the line. The utterly stricken Carter was to become one of Al-Kaisys big successes.
Since 2010, Guys and St Thomas has offered a residential programme for adults whose chronic pain hasnt responded to treatment at other clinics. The patients come in for four weeks, away from their normal environment, and are seen by a motley crew of psychologists, physiotherapists, occupational health specialists and nursing physicians who between them devise a programme to teach them strategies for managing their pain.
Many of these strategies come under the heading of neuromodulation, a term you hear a lot in pain management circles. In simple terms, it means distracting the brain from constantly brooding on the pain signals it is getting from the bodys periphery. Sometimes the distraction is a cunningly deployed electric shock.
We were the first centre in the world to pioneer spinal cord stimulation, says Al-Kaisy. In pain occasions, overactive nerves send impulses from the periphery to the spinal cord and from there to the brain, which starts to register pain. We try to send small bolts of electricity to the spinal cord by inserting a wire in the epidural area. Its only one or two volts, so the patient feels just a tingling sensation over where the pain is, instead of feeling the actual pain. After two weeks, we give the patient an internal power battery with a remote control, so he can switch it on whenever he feels pain and carry on with his life. Its essentially a pacemaker that suppresses the hyperexcitability of nerves by delivering subthreshold stimulation. The patient feels nothing except his pain going down. Its not invasive we usually send patients home the same day.
When Carter, suffering from agonising pain in the groin, had failed to respond to any other treatments, Al-Kaisy tried his new combination of therapies. We gave him something called a dorsal root ganglion stimulation. Its like a small junction-box, placed just underneath one of the bones of the spine. It makes the spine hyperexcited, and sends impulses to the spinal cord and the brain. I pioneered a new technique to put a small wire into the ganglion, connected to an external power battery. Over 10 days the intensity of pain went down by 70% by the patients own assessment. He wrote me a very nice email saying I had changed his life, that the pain had just stopped completely, and that he was coming back to normality. He said his job was saved, as was his marriage, and he wanted to go back to playing sport. I told him, Take it easy. You mustnt start climbing the Himalayas just yet. Al-Kaisy beams. This is a remarkable outcome. You cannot get it from any other therapies.
The greatest recent breakthrough in assessing pain, according to Professor Irene Tracey, head of the University of Oxfords Nuffield Department of Clinical Neurosciences, has been the understanding that chronic pain is a thing in its own right. She explains: We always thought of it as acute pain that just goes on and on and if chronic pain is just a continuation of acute pain, lets fix the thing that caused the acute and the chronic should go away. That has spectacularly failed. Now we think of chronic pain as a shift to another place, with different mechanisms, such as changes in genetic expression, chemical release, neurophysiology and wiring. Weve got all these completely new ways of thinking about chronic pain. Thats the paradigm shift in the pain field.
Tracey has been called the Queen of Pain by some media commentators. She was, until recently, the Nuffield Professor of anaesthetic science and is an expert in neuroimaging techniques that explore the brains responses to pain. Despite her nickname, in person she is far from alarming: a bright-eyed, enthusiastic, welcoming and hectically fluent woman of 50, she talks about pain at a personal level. She has no problem defining the ultimate pain that scores 10 on the McGill questionnaire: Ive been through childbirth three times, and my 10 is a very different 10 from before I had kids. Ive got a whole new calibration on that scale. But how does she explain the ultimate pain to people who havent experienced childbirth? I say, Imagine youve slammed your hand in a car door thats 10.
She uses a personal example to explain the way perception and circumstance can alter the way we experience pain, as well as the phenomenon of hedonic flipping, which can convert pain from an unpleasant sensation into something you dont mind. I did the London Marathon this year. It needs a lot of training and running and your muscles ache, and next day youre really in pain, but its a nice pain. Im no masochist, but I associate the muscle pain with thoughts like, I did something healthy with my body, Im training, and Its all going well.
I ask her why there seems to be a gap between doctors and patients apprehension of pain. Its very hard to understand, because the system goes wrong from the point of injury, along the nerve thats taken the signal into the spinal cord, which sends signals to the brain, which sends signals back, and it all unravels with terrible consequential changes. So my patient may be saying, Ive got this excruciating pain here, and Im trying to see where its coming from, and theres a mismatch here because you cant see any damage or any oozing blood. So we say, Oh come now, youre obviously exaggerating, it cant be as bad as that. Thats wrong its a cultural bias we grew up with, without realising.
Recently, she says, there has been a breakthrough in understanding about how the brain is involved in pain. Neuroimaging, she explains, helps to connect the subjective pain with the objective perception of it. It fills that space between what you can see and whats being reported. We can plug that gap and explain why the patient is in pain even though you cant see it on your x-ray or whatever. Youre helping to bring truth and validity to these poor people who are in pain but not believed.
But you cant simply see pain glowing and throbbing on the screen in front of you. Brain imaging has taught us about the networks of the brain and how they work, she says. Its not a pain-measuring device. Its a tool that gives you fantastic insight into the anatomy, the physiology and the neurochemistry of your body and can tell us why you have pain, and where we should go in and try to fix it.
Some of the ways in, she says, are remarkably direct and mechanical like Al-Kaisys spinal cord stimulation wire. There are now devices you can attach to your head and allow you to manipulate bits of the brain. You can wear them like bathing caps. Theyre portable, ethically allowed brain-simulation devices. Theyre easy for patients to use and evidence is coming, in clinical trials, that they are good for strokes and rehabilitation. Theres a parallel with the games industry, where theyre making devices you can put on your head so kids can use thought to move balls around. The games industry is, for fun, driving this idea that when you use your brain, you generate electrical activities. Theyre developing the technology really fast, and we can use it in medical applications.
Pain has become a huge area of medical research in the US, for a simple reason. Chronic pain affects over 100 million Americans and costs the country more than half a trillion dollars a year in lost working hours, which is why it has become a magnet for funding by big business and government.
Researchers at the Human Pain Research Laboratory at Stanford University, California, are working to gain a better understanding of individual responses to pain so that treatments can be more targeted. The laboratory has several study initiatives on the go into migraine, fibromyalgia, facial pain and other conditions but its largest is into back pain. It has been endowed with a $10m grant from the National Institutes of Health to study non-drug alternative treatments for lower back pain. The specific treatments are mindfulness, acupuncture, cognitive behavioural therapy and real-time neural feedback.
They plan to inspect the pain tolerance of 400 people over five years of study, ranging from pain-free volunteers to the most wretched chronic sufferers who have been to other specialists but found no relief. The idea is to find peoples mid-range tolerance (theyre asked to rate their pain while they are experiencing it), to establish a usable baseline. They then are given the non-invasive treatments such as mindfulness and acupuncture and are subjected afterwards to the same pain stimuli, to see how their pain tolerance has changed from their baseline reading. MRI scanning is used on the patients in both laboratory sessions, so that clinicians can see and draw inferences from the visible differences in blood flow to different parts of the brain.
A remarkable feature of the assessment process is that patients are also given scores for psychological states: a scale measures their level of depression, anxiety, anger, physical functioning, pain behaviour and how much pain interferes with their lives. This should allow physicians to use the information to target specific treatments. All these findings are stored in an informatics platform called Choir, which stands for the Collaborative Health Outcomes Information Registry. It has files on 15,000 patients, 54,000 unique clinic visits and 40,000 follow-up meetings.
The big chief at the Human Pain Research Laboratory is Dr Sean Mackey, Redlich professor of anaesthesiology, perioperative and pain medicine, neurosciences and neurology at Stanford. His background is in bioengineering, and under his governance the Stanford Pain Management Center has twice been designated a centre of excellence by the American Pain Society. A tall, genial, easy-going man, he is sometimes approached by legal firms who want him to appear in court to state definitively whether their client is or is not in chronic pain (and therefore justified in claiming absentee benefit). His response is surprising.
In 2008, I was asked by a law firm to speak in an industrial injury case in Arizona. This poor guy got hot burning asphalt sprayed on his arm at work; he had a claim of burning neuropathic pain. The plaintiffs side brought in a cognitive scientist, who scanned his brain and said there was conclusive evidence that he had chronic pain. The defence asked me to comment, and I said, Thats hogwash, we cannot use this technology for that purpose.
Shortly afterwards, I gave a talk on pain, neuroimaging and the law, explaining why you cant do this because theres too much individual variability in pain, and the technology isnt sensor-specific enough. But I concluded by saying, If you were to do this, youd use modern machine-learning approaches, like those used for satellite reconnaissance to determine whether a satellite is seeing a tank or a civilian truck. Some of my students said, Can you give us some money to try this? I said, Yes, but it cant be done. But they designed the experiment and discovered that, using brain imagery, they could predict with 80% accuracy whether someone was feeling heat pain or not.
Mackey finally published a paper about the experiment. So did his findings influence any court decisions? No. I get asked by attorneys, and I always say, There is no place for this in the courtroom in 2016 and there wont be in 2020. People want to push us into saying this is an objective biomarker for detecting that someones in pain. But the research is in carefully controlled laboratory conditions. You cannot generalise about the population as a whole. I told the attorneys, This is too much of a leap. I dont think theres a lot of clinical utility in having a pain-o-meter in a court or in most clinical situations.
Mackey explains the latest thinking about what pain actually is. Now we understand that pain is a balance between ascending information coming from our bodies and descending inhibitory systems from our brains. We call the ascending information nociception from the Latin nocere, to harm or hurt meaning the response of the sensory nervous system to potentially harmful stimuli coming from our periphery, sending signals to the spinal cord and hitting the brain with the perception of pain. The descending systems are inhibitory, or filtering, neurons, which exist to filter out information thats not important, to turn down the ascending signals of hurt. The main purpose of pain is to be the great motivator, to tell you to pay attention, to focus. When the pain lab was started, we had no way of addressing these two dynamic systems, and now we can.
Mackey is immensely proud of his massive CHOIR database which records peoples pain tolerance levels and how they are affected by treatment and has made it freely available to other pain clinics as a community source platform, collaborating with academic medical centres nationwide so that a rising tide elevates all boats. But he is also humble enough to admit that science cannot tell us which are the sites of the bodys worst pains.
Back pain is the most reported pain at 28%, but I know theres a higher density of nerve fibres in the hands, face, genitals and feet than in other areas, Mackey says, and there are conditions where the sufferer has committed suicide to get away from the pain. Things like post-herpetic neuralgia, that burning nerve pain that occurs after an outbreak of shingles and is horrific; another is cluster headaches some patients have thought about taking a drill to their heads to make it stop.
Like Irene Tracey, Mackey is enthusiastic about the rise of transcranial magnetic stimulation (Imagine hooking a nine-volt battery across your scalp) but, when asked about his particular successes, he talks about simple solutions. Early on in my career, I used to be very focused on the peripheral, the apparent site of the pain. I was doing interventions, and some people would get better but a lot wouldnt. So I started listening to their fears and anxieties and working on those, and became very brain-focused. I noticed that if you have a nerve trapped in your knee, your whole leg could be on fire, but if you apply a local anaesthetic there, it could abolish it.
This young woman came to me with a terrible burning sensation in her hand. It was always swollen; she couldnt stand anyone touching it because it felt like a blowtorch. Mackey noticed that she had a post-operative scar from prior surgery for carpal-tunnel syndrome. Speculating that this was at the root of her problem, he injected botulinum toxin, a muscle relaxant, at the site of the scar. A week later, she came up and gave me this huge hug and said, I was able to pick up my child for the first time in two years. I havent been able to since she was born. All the swelling was gone. It taught me that its not all about the body part, and not all about the brain. Its about both.
Main illustration by Matthew Richardson
This is an edited version of an article that appears on Mosaic. It is republished here under a Creative Commons licence.
Follow the Long Read on Twitter at @gdnlongread, or sign up to the long read weekly email here.
Read more: https://www.theguardian.com/science/2017/jan/25/how-doctors-measure-pain
