I was touched by this essay from a doctor about how to treat patients with chronic pain compassionately.
At some point I tried to introduce the idea that perhaps a pain-psychologist might help. “You don’t even know what’s wrong with me and now you’re trying to tell me it’s all in my head, you’re not listening to me!” she all but screamed at me, tears welling up in her eyes.
I believed what I was saying as I dug myself deeper into a hole I wasn’t going to dig myself out of.
“You’ve done nothing for me, nothing! I want to see someone else.” I’ve been her doctor for almost 10 years and have seen her health deteriorate dramatically, her marriage take the strain and recover, her children in and out of illness and her husband through his redundancy and depression and more
Why then is it so hard for doctors and patients to cope with chronic pain?
Another patient came in to see me, full of anger and frustration. Over and again she said how sick she was of explaining to other people why she couldn’t come out, help out or do the things she used to do. I hardly had a chance to speak, every now and again she challenged me to offer her an investigation or a treatment she hadn’t tried that would relieve her pain or chronic fatigue.
As gently as I could I asked her to describe why it was such a struggle to explain how she felt and she said that she had given up and how isolated she was. I said that in my experience this was all too common and asked if I could show her something that might help.
When I showed her the Kahlo picture (above) she burst into tears.
Chronic pain extends to the limits of language and beyond.
This was the first time I’ve tried showing a picture to a patient – and it felt very odd, it’s not in the NICE guidelines for chronic pain, but having researched this essay I was acutely aware of how words often fail. The tension in the room was relieved when words were no longer necessary.
Listening to accounts of pain
Patients’ accounts of pain are valued by doctors for the contribution they make to a diagnosis.
I remember vividly a lecture from a distinguished neurologist who explained that we could diagnose headaches by watching him listen to a patient’s history. Listening to a patient describe a ‘feature-full’ migraine, he would be alert and interested, but listening to a patient describe an equally disabling, but ‘feature-less’ chronic tension headache, the neurologist would look bored and distracted.
Doctors often loose interest once they’ve got the information they want.
We are taught to take a clinical history by listening selectively to our patient’s stories to remove the particular, subjective features, which are deemed irrelevant to the diagnostic science of medicine.
Philosopher Havi Carel uses the term “epistemic injustice” to explain the gap between what doctors want to know and what patients want them to know.
Our refusal to pay due attention and respect to our patients’ account of suffering is a “wrong done to someone specifically in their capacity as knower”. At its core is the “denigrating or downgrading of [patients] testimonies and interpretations which are dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming”. All of which must (ought to be) be familiar to doctors who have struggled with patients in chronic pain.
Doctors are taught to be sceptical of patients’ accounts, treating them as unreliable, insufficiently articulate, and subordinate to their own interpretation.
But a degree of scepticism is necessary, not simply because accounts are sometimes inconsistent and inauthentic, but because accounts of suffering serve a multitude of context-dependent purposes and warrant a wide range of responses, for example, not everyone wants sympathy or action.
For patients in chronic pain questions such as, “Why me? Why now? Why does is hurt so much? Why can’t you tell me what’s wrong? Why can’t anyone help?” – and, just as important, their own, tentative answers to those questions – still need acknowledging even if they cannot be answered.
When Sharon accused me of not listening to her, the problem was not simply that I was not listening, but that I was listening in the wrong way, I had failed to acknowledge her suffering and she didn’t believe that I believed her.
In order to ask the right questions about pain we have to unlearn what we have learned about taking a clinical history; we cannot presume to know about suffering from a clinical history.
The pain with no name
The pain clinic, neurosurgeons and psychologists discharge patients when their course of treatment is over, relieving them of patients for whom “nothing more can be done”.
As medicine becomes more specialized and fragmented, it is increasingly common for patients to be discharged back to the GP with the specialist satisfied that their organ of special interest is not responsible for the patient’s symptoms
Our patients are rarely ever satisfied with the lack of diagnosis and the GP remains to face the patient’s pain and frustration. GPs are the ones who have to care for patients for whom “nothing more can be done” or for whom, “no cause for their pain can be identified”.
Brenda recently joined our practice. “Doctor, I have to tell you, I have cancer and a headache and I’m not worried about the cancer.”
It was the first time we had met and I was the first doctor she had seen in years. “I have seen about the cancer on the telly, and I know that a woman of my age shouldn’t have no bleeding and that means it’s cancer and they’re going to do an operation and I’ll be ok.” This is exactly what she said and though it’s unusual that someone is so direct, it serves my point well. “It’s the headache I cannot stand doctor, what is the cause of it?”
Pain we cannot explain is frightening because of what it might be.
The uncomfortable truth is that most of the time we just don’t know why pain hurts so much.
In seizing upon simple explanations we contribute to the shame and stigma felt by people suffering chronic pain.
The loneliness of pain
I’ve had this since university, but none of my friends know about it.” Toby, a 27 year-old accountant looked fit, athletic and confident.
“There are weeks when I don’t see anyone except at work, I can’t stand in a bar, dance in a club, or even walk anywhere. I don’t want anyone to see me when I’m like that.” “So what do you do?” I asked, “Nothing”, “Nothing?” “I just stay at home watching TV, I don’t even answer the phone, Idon’t want to have to explain or make excuses. After a while, people stop asking.”
“Since you ask, I do still get headaches, almost every day,” I interviewed my wife for this essay. “Rarely a day goes past without a headache. They’re horrendous, they’re from the back of my neck to the top of my head, they’re exhausting. If I work for a day, they’re twice as bad for the next three days. I love to swim, but twenty minutes of swimming brings on a migraine – once a week I can just about bear it, but I can hardly speak for most of the rest of the day. They make me feel irritable which I hate, so I avoid people until they settle down. They’ve been like this for years; I’ve seen GPs, neurologists, physiotherapists, massage therapists and a psychiatrist. I’ve had acupuncture and done yoga, but they’re no different now from how they were 15 years ago, and I expect they’ll be the same in another 15 years.”
People with chronic pain grow tired of telling the same story over again
Chronic pain is dull and exhausting.
Most of my patients with chronic pain are tired of making excuses, trying to explain why they cannot join in or help out.
Doctors are uneasy about spending time with the lonely.In an age of ever increasing demands for healthcare productivity, where the heavy hand of state surveillance scrutinizes the details of every clinical encounter, doctors feel increasingly anxious about consultations spent listing, bearing witness to suffering or providing comfort instead of diagnosing and treating, measuring vital statistics or giving lifestyle advice, all of which are recorded measured and paid for.
It is little surprise that patients with chronic pain experience acutely the sense of being unwanted and unwelcome
Chronic pain is a constant reminder of a broken body.
My motivation for writing this essay came out of despair.
Too often when confronted by patients which chronic pain, we “do something” in order to get rid of them, we send them for another investigation or another opinion or we prescribe more drugs.
Another reason for “doing something” is because chronic pain traps us in the present and destroys a sense of progress. “Doing something” sets us in motion again, even if we’re only going round in circles.
Listening to stories about chronic pain makes doctors feel helpless, exhausted, anxious and at a loss for words.
Paying close attention we might recognise that this is because the restitution narrative is inadequate and that we are trapped in chaos. I’ve explained how to listen for these different narratives in a recent essay about forgiveness: it’s both a warning and a ray of hope that we might be stuck in chaos for a long time
The chaos narrative is already populated with others telling the ill person that “it can’t be that bad”, “there’s always someone worse off”, “don’t give up hope”; and other statements that ill people often hear as allowing those who have nothing to offer feel as if they have offered something.
Bearing witness is different from witnessing alone.
Any doctor who has felt tired or forlorn after spending time with a patient in chronic pain, understands the burden that we feel when our patients share their suffering. We know that this is hard work, indeed, compassion means ‘to suffer together with’.
Chronic pain blogger Jessica Martin offers us a mantra,
I don’t want you to save me,
I want you to stand by my side as I save myself.
Finding the right balance of proximity and distance is a challenge. Too close and we project too many of our own feelings on our patients, too far and we have abandoned them
…taking care of patients suffering chronic pain is one of the hardest things I do as a GP. It’s been my experience that patients quite frequently realise this too.
References and further reading
Pain is weird. Fantastic overview from Paul Ingraham – Painscience.com
The Buddhist practice of Tonglen uses things we find difficult to “wake up” instead of being a big obstacle
It has been very useful in thinking about how I manage patients with chronic pain. The key is to engage with the difficult emotions and find better ways to cope rather than avoiding them.
Original article: How doctors respond to chronic pain | A Better NHS