Knowledge, Uncertainty, and Wisdom in Pain.
Dr. Michael Negraeff, Pain BC/ TLABC Conference March 27-28, 2015
I became an anesthesiologist because I liked to be in control. I was certain if I knew everything there was to know about physiology, diseases, and pharmacology then I could give a good, safe anesthetic. I viewed my responsibility as a protector of the patient from harm during a vulnerable event. On the other side of the drape, the surgeon was doing all kinds of things that could harm or kill them! Now, the anesthesia station is like being in the cockpit of a jet fighter: the patient’s head is safe and snug there, and you are surrounded by reassuring technology and monitors and buttons. I felt I could fly the patient safely to the recovery room because science and protocol told me exactly what to do and when to do it.
Then, while I was still training, an accident occurred and I ended up with a spinal cord injury. I returned to training and eventually passed my exams and had to decide if I would work as an anesthesiologist. But I didn’t have the same confidence in my ability. The knowledge was there but I wasn’t sure I could safely deliver the patient with my physical limitations. Although Anesthesiology as a career seemed possible, it was not probable.
I had injury pain, which went away. But several months later pain came back. It was different, and much more annoying and persistent than the injury pain. I remember the day, on holidays in Hawaii, when I acknowledged with a bolt of clarity and anxiety, that I was having chronic pain because of the nerve injury. I was like, “Seriously? WTF!”
I sought answers and relief. But it was only partial and temporary relief. I kept wondering, “Why is this so hard to treat? Why won’t it go away?” I knew people had chronic pain, but I wasn’t really that exposed to it in my training. 20 years ago it was even more of a backwater in medicine that it is now.
I wondered whether a career in pain medicine would be a good idea. Would I find it empowering? Or would I find it depressing? Would I find my own experiences helpful to others? Or would it be too close to me? I felt both drawn to it and repelled by it at the same time.
So I took a year off. It was one of the best years ever. The whole accident business was settled. I owned an apartment. I was married. I was competing in athletic events. I realized I could do anything I wanted. I could travel and live abroad. I could become a photographer. I could learn how to play the guitar and start a band like David Hay. I was off the conveyor belt of a career in medicine.
Why would I want to mess that up with a career in Pain Medicine?
I didn’t know why exactly. It was a puzzle, both for me and for others. And I wanted to know. I also felt that I needed some sort of employable skill.
My colleagues at VGH helped me decide on a program for training and promised me a job in the department, even though there was not a pain clinic at VGH.
I signed up for a fellowship in Pain Medicine with Professor Michael Cousins at the Royal North Shore Hospital in Sydney Australia. He was a big wig in Pain. If you were going to go on a journey in Pain Medicine, you might as well go somewhere where the sun shines and the beaches beckon.
One day, after arriving in Australia, which was already feeling like a holiday rather than a work thing, we were hanging around the beach at Manly. Have you been there? Picture the sun and sand, sound of the surf, and scent of sunscreen wafting off the beach. Not a care, until I met one of the fellows who was just finishing his year and readying to return to Switzerland. His name was Eric. He was telling me how difficult his year was. The workload was intense. The patients were difficult. And he was going back not sure what he would do with it all. I thought back on my past year of freedom and looked out on the beach and thought, “why am I doing this again?"
But I already committed. I reminded myself how great it would feel to know so much about pain and be in control like in the anesthesia cockpit. With enough knowledge and skill I could battle back the demon of pain and safely deliver the patient to the other side of the swamp.
Now, we've have gained tremendous knowledge about pain in the past 50 years. I began acquiring that knowledge with Professor Cousins in his office as he patiently taught me and two other new fellows about pain physiology. He had this sheaf of papers and overheads he stored in a binder. He would patiently take each of them out and ask us in his Australian drawl what the picture meant. Then calmly and confidently explain the more accurate interpretation while we sat in rapt attention. I sort of felt that if I could simply absorb all his knowledge then perhaps I too could make people feel better, as he clearly did.
I learned then that the spinal cord and its neurons were ground zero in the battle against pain. I began to see patients as a big tangle of screwed up neurons that I had the keys to untangle with the medications and nerve block procedures we were learning. I thought, “Yes, this is what I need."
Except it didn’t always work. As I looked critically at what was going on, I saw we treated a lot of people but only a few got much relief. Many remained profoundly disabled even when it seemed the pain got a little better. The untangling of screwed up neurons wasn’t the secret sauce. I wasn’t in control and I was losing people in the swamp. There must be secret knowledge somewhere that I had not yet found.
I sought out one of the psychologists in the pain department. Michael Nicholas ran a program in the pain clinic called ADAPT. It was three weeks long and took in a group of 10 to 15 people with pain to perform what I thought of as brainwashing at the time. The plan was to get them to realize that their pain problems were all surmountable if they just changed their thinking and their behaviour. I avoided this at the start of my fellowship because I wasn’t there to make people feel better about their problems and how to cope; I was there to learn how to cure them! But the drugs and needles weren’t doing that.
I spent hours with Michael and some of the other psychologists. I sat in on several of the sessions in the ADAPT program with the participants. I learned that what people thought and believed about their pain, and how they behaved, was important. It was so important that it was making them sick and disabled. They stopped moving, they got depressed, their friends hated them and avoided them, and their family felt bad and reinforced their behaviours by over helping them. “Ah, hah!” People with pain aren’t a tangle of messed up neurons, they are a tangle of messed up thoughts and behaviours. This was the secret knowledge I was looking for!
I started giving lectures, as the Doc, in the ADAPT program, full of certainty about how it was important to turn their backs on their biomedical crutches. To cast them aside and embrace the new religion of overcoming your problems by changing what you understand about your pain and how you behave. Soon in the clinic, I was tossing a few medications here and there without much conviction and recommending everyone go to ADAPT - I thought of it like sunshine, we could all use a little behaviour modification and belief tune-up, right?!
Except, it didn’t always work. Sometimes people either couldn’t or wouldn’t embrace a change, or sometimes the gains they made would wither by 6 months. Niggling me too, was the fact that they, like me, still had pain. We didn’t change the pain; we weren’t even trying to change the pain. That was something we emphasized. We won’t change your pain at all; you will just be happier and more functional because of what you understand, what you believe and how you behave.
It bothered me too that the program insisted that all biomedical treatments were out of the way. Pain drugs were preferred to be weaned off. Biomedical interventions weren’t to be brought up otherwise the patient won’t embrace the shift we are asking them to embrace. Except some of these people seemed to have benefit with medications. Even with massage and other so-called “passive hands-on treatments”. Surely people can embrace a change in their thinking and continue with some biomedical treatments? I didn’t believe people were that simple or so entrenched that they couldn’t do both.
I understood it. But this approach wasn’t the secret sauce.
I spent time in cancer pain management in my fellowship too. Clearly our biomedical tools, particularly opioids, worked better here. I was on familiar ground. I learned how to perform nerve blocks and assisted with advanced techniques like spinal and epidural infusion pumps. Of course there were existential suffering problems, family problems, and sometimes addiction problems just like in chronic pain. But cancer has a big giant machine working for it. There were lots of people available that could help the patient, so we could happily go about our biomedical interventions that worked better than in chronic pain. Besides, most of these people were dying. All the problems and messiness would die with them. Harsh maybe, but true.
But it wasn’t for me. I was drawn back to the problems of chronic pain. I began to view it as one giant hairball whose gravitational field kept pulling me back to it. I so badly wanted to untangle this hairball and understand just what the hell was going on. I wasn't in control like the anesthesia cockpit and I sure wasn’t guiding people safely to the recovery room.
There was a patient in Sydney whose own hairball I was orbiting safely from high up when I surprisingly got pulled into a dangerous orbit almost crashing and burning on the surface of hairball "chronic pain and addiction”. She was in her 40s with a history of addiction to opioids, chronic abdominal pain and a diagnosis of Crohn’s disease. We were asked to help with her “pain” management while she was admitted on the GI ward. My staff were wary and spent as little time as possible with her.
I can vividly remember Prof (Michael Cousins) rolling in at 730 AM on his Tuesday morning rounds with his white coat and his entourage of residents, fellows and nurses and hold court in the patients room. Can you picture it? So “old school” but he was always a consummate Australian gentleman even in his paternalism. But she had seen this before and one look at her face told me she knew just how to handle this puffed up charming MD. She waved him away and dispatched him after he offered his gentlemanly medically oriented advice. And it became clear to me in an instant that Prof, my guru, did not have all the skills and knowledge to handle the range of what was out there. He was not embarrassed by her. He accepted her behaviour and his inability to save her with his medical knowledge and power, and he moved on.
I lingered wondering what had just happened and what I was missing. After all, here was a patient who had pain and a condition that we know causes pain, but also had a problem since her teens with drugs. She had the disease of addiction. Were we simply to ignore her pain?
I volunteered to be point man. I began by asking her all sorts of questions about her pain, her disease and her life. Now I’m sure you can see that it didn’t take her very long to see an ally - she was an old wolf, and I was fresh meat. Like someone had left a helpless baby deer at the door of her den. So as I was trying to figure her problems out, she began playing with me. I wasn’t completely naive, but it wasn’t long before we were engaged in endless negotiation while I tried desperately to help her see the limitations of opioid medication for her pain, show her other ways of improving her function on one hand, while on the other hand I didn’t want to deprive her of the relief that she clearly obtained from Demerol.
It was never resolved and she was eventually discharged. The whole experience left me extremely unsatisfied. I learned that managing pain and addiction was another kettle of fish requiring different skills. I learned that the hospital environment was not the place to do so if avoidable and that a team is better than one.
As I left my fellowship I felt that I knew pretty much everything that I could know about pain at the time. But my deepest fear was that that was not enough. “What if,” I thought, “despite all of it, it doesn’t work very well and people go on suffering?” I wasn’t sure I could handle that. It wasn’t like anesthesia at all.
When I returned home, I took some time and wondered how to proceed. I could start work at VGH on Spine assisting with the most difficult acute and chronic pain patients. Or once again, I could do something else.
Except, Kathleen said I couldn’t stay home driving her crazy with my hobbies. And I still hadn’t figured out this chronic pain thing. I’m not sure I would call it a passion, but rather an endless curiosity and desire to help. Maybe that is a passion. Anyway I took the job.
Now, there is a conundrum here I will point out in case you haven’t noticed it yet. I may have had curiosity and a need to know how to untangle the hairball, but my greatest fear was that I would not be able to. We are supposed to know things as physicians, and have answers and make things better. I was not ready to fail.
Now when a man is afraid of something, he only has three choices to respond: attack it and kill it, run away, or, pretend it doesn’t exist. Now my wife tells me I tend to do the latter - pretend it doesn’t exist. I tell her to be grateful because I’m a bit afraid of her. Maybe there should be a fourth way…something more positive.
Anyway, I chose to ignore the hairball. I did this by carving out a niche for myself where I could feel in control and help without being endlessly tangled by it. The niche was to work with people that had spinal cord injury and neuropathic pain. The injury was obvious and the cause of pain obvious. Also, that was my pain. I knew something about it. In other words, I chose one little thread of the hairball that was sticking right out and I could easily snip it off from a safe distance and say I was done. Like a laser guided bomb from 30,000 feet.
I pretended not to see the hairball the neuropathic pain was attached to. I learned I couldn’t do much about it, at least not on my own, and on my own at VGH I was. There was no outpatient clinic. When people got discharged it was not my problem any more. “Bye bye, thank you very much! I’ll send a note to your GP.” How convenient. So I lived in this blissful ignorance of the hairball for some time, happily snipping away at neuropathic pain threads. I felt pretty clever I had outwitted my fear.
But I began to see the problems that happen when you simply dump people who still have pain out of the hospital without follow up. I felt bad they had nowhere to go when their neuropathic pain was still uncontrolled. So I began to see some of them as outpatients. But only the ones I thought I could still work on with pharmacology. I didn’t want the whole hairball, just certain threads.
I remember them coming into the clinic sort of dragging something behind them like this… “Ugg, ugg, ugg.”
“What have you got in there, Mr. Dawson?” I ask.
“Oh, this? That’s my pain hairball."
“Oh…” “So, how’s that gabapentin that we started in the hospital working?"
And with that we would both silently agree to not talk about the hairball slowly entangling their whole life and instead talk about biomedical treatments that were “sort of”, working.
I went along in this safe way for quite awhile. But the easy fruit was being picked. The patients got more complicated. When the surgeons, bless their hearts, found out I was seeing a few people after discharge they would send me people they didn’t know what to do with. I resisted this at first, because the hairball was bigger, but then I thought, what am I actually here for? Even the spinal cord patients got more complicated as the treatment failures racked up, addictions issues cropped up, sleepless nights became sleepless months, and moods turned sour. They would start pulling that suitcase out from behind them saying, “Doc, I really want to show you what I got in here, you won’t believe what a mess it’s becoming! There’s hair everywhere! It’s all over my apartment, my friends keep finding hair stuck to them, my wife is complaining about the hair in the bedroom. Even the dog has had enough!"
So reluctantly at first, I started peeking at the hairball they were dragging around. When you begin to ask people why they are suffering, it can be pretty scary. They were right; it wasn’t pretty. I felt I was forced to because whatever else we were trying wasn’t enough. I didn’t really want to because I was on my own, and I didn’t have confidence in my ability to help beyond my comfort zone of biomedical treatments. I knew it was the right thing to do, to begin to look at the whole person to find a whole solution.
I protected myself another way from this fear of “not enough". When I was in Sydney I saw how much better it was to work in an environment with different professionals around. I wanted that too for my patients and me and it did not exist at VGH.
I began to find a few others also wanting to create change.
That first led to work within the VCH region - we didn’t get a pain program.
More people joined and it became a Provincial initiative - we didn’t get a provincial program.
The ministry of health advised us to start a not-for-profit for pain. We can fund you with grants. We did. They didn’t. At least not for six more years.
We called it Pain BC and it became a powerful voice and change agent for people with pain. Today, Pain BC provides access to education, skill development and support for people with pain and hairballs, for healthcare providers with pain hairballs, and collaborates with professional associations, healthcare system leaders, and the MoH, all of whom also have their own pain hairball-itis.
Now while I was busy with all of that, in the past 8 or 9 years my outpatient practice did not change much. Mostly I served the spinal trauma and surgery populations within VGH. I approached each patient the same way. Tell me what happened to you, tell me about your pain, and by the way show me your hairball in all it’s glory. If we were going to look at it, we needed to see the whole damn thing - sleep, mood, substance use, family, job, losses of identity, fears, beliefs, behaviours - everything. Then I’d patiently explain what I could do, what I could not do, what they could do, who or what else might be able to help them. Now that takes time. And it takes energy. And it takes emotional resilience. Because the hairball can be fugly. I can only do that with a few patients each week. The rest of the time it is inpatient work.
By now, you might think I had it all figured out. But you would be wrong. I had been ignoring my own hairball - my own psychological baggage. Not my pain - that’s a rather small side issue. I had not dealt with this issue of needing control and certainty through knowledge. I wanted to avoid failure. Just like how I felt in the cockpit of the anesthesia station. All my knowledge and power could not save me as I struggled to offer the same safe passage to the patient with chronic pain. And that was building.
Recently, my father died. Not unexpectedly. He had prostate cancer, but not much pain thankfully. But I watched him struggle with existential angst that rubbed off on me in ways that I could not clearly see but clearly felt. Then, he was gone. And like many who’ve lost a loved one for the first time, I wondered, “so that’s it?” “What was that all about anyway?” I loved him deeply and his life had meaning, but…what do we do with these existential questions?
So it was with that mix of sadness and loss, and deep questions that I went back to work. And it only took two or three difficult patient stories to throw me into complete tailspin. I was no longer orbiting the hairball. I was crashing full speed weighted down by the mess of the hairball, my own need to understand and control, and questions of whether anything I was doing made any difference or was simply…futile. People were still having pain after all. Perhaps a few get cured, but mostly not. Now we have this opioid problem - trying to figure out who benefits, who doesn’t, and people being harmed. And on top of that the clinical resources are not getting better, in fact they are getting weaker in many places. And you know when your feeling miserable and someone tries to cheer you up or wipe the crap off your previously rose coloured glasses and you feel like bopping them on nose!? Well that was happening. I felt like one of my angry patients but for different reasons.
I felt like quitting. Shut down the practice. Quit all the committees. I tried to attack and kill it with knowledge and skill - that didn’t work. I tried to pretend it doesn’t exist - by carving a niche, that didn’t work. It was time to exercise the run away option. I wanted to go live in a cave on an Island in the Orkneys or somewhere sort of like Middle Earth until this feeling of futility went away.
Having a family prevented me from running off to the Orkneys. So I spent a lot of time reading, writing, and thinking back to when I started all of this and why.
And on my way back, with the help of mentors and friends, I’ve come to understand three things about myself, and my profession.
First of all, anesthesia and delivering the patient safely to the recovery room is a team sport just like everything else. Better technology and protocols hid that from me. Pride, and fear of failure caused me to think I was the sole carrier of that responsibility. I carried that belief into pain management. Teams, including the patient, are and always will be important in health care.
Second, shame is still a powerful force in medicine. The work of Brene Brown helped me recognize this even as I didn’t think it applied to me. For over 100 years, the dominant schema in healthcare has been "the doctor knows.” If he or she doesn’t know, you’re screwed, because nobody knows. Now obviously if you stop and think about it, that’s nonsense, but it doesn’t matter because it’s written into our societal DNA and it needs to be challenged.
I felt shame because I wanted my knowledge and skill to get rid of pain, and it couldn’t. At least not enough. I wanted my knowledge and technology to provide answers, and it couldn’t always do that.
Now do you know what happens when we don’t acknowledge our shame, our failures, and the simple fact that we don’t always know? We can cause harm. We over investigate when we know better, because it hurts to say, “we don’t know”. We create explanations that are not based on science because it hurts to say, “we don’t know.” We provide treatments with little chance of success or great chance of harm because it hurts to say, “I don’t know what else to do.” We ignore things like placebo effects, reversion to the mean, and natural improvement because we don’t care why someone gets better, just so long as they do when they are in our hands.
Third, I came to understand that my motivation to go into this field wasn’t only to relieve pain. It was to relieve suffering. But I thought the only way to do that was to relieve the pain. If it had just been about pain, then I would have quit a long time ago.
We have knowledge, yes. Much more than before. We still need to pull it together into better models.
We still have a lot of uncertainty. What is myofascial pain? I don’t know. Experts don’t agree. Who should get opioids and for how long will they work? I don’t know that either. We have to be honest about these things.
So if there’s any holy grail right now, it is this. While we await these answers, provide your patients and clients a lasting and stable, caring environment as early as possible in their journey. We must assess the whole person, and the whole reasons for their suffering. We can all make an effort to do this and advocate for resources that allow it. Suffering is driving us to seek answers to pain in the first place because it is frustrating our life in some way. Find out what that is. Broaden your scope of treatment and support.
Whole people need whole solutions. We never know which thread sticking out of the hairball might be the one that is most important to unraveling it and making a big difference in someone’s life.