The Problem of Pain

I make my way through the retail mall that now occupies the lobbies of most big-city hospitals and head up to the llth floor of Mount Sinai, where the Wasser Pain Management Centre occupies one corner. I’m here to talk to the director, Dr. Allan Gordon, and I’m early, so I wander around. But apart from a wintry view of the city below, grey and delicate as a pencil sketch, there is nothing to see here. No spiking green lines on monitors, no ER drama. The centre, a world leader in its field, seems as invisible and commonplace as pain itself. But make no mistake: although this pioneering breed of medicine doesn’t promise miracle cures, lives are being rescued here.

This is a multidisciplinary clinic for people living with chronic, non-cancer pain – pain that lasts a month or more beyond the usual recovery period or illness, or that goes on for years, as a result of an underlying condition such as osteoarthritis or diabetes. It’s estimated that six million Canadians – roughly one in five – suffer from some form of chronic pain. And at least 500,000 of these live with neuropathic pain – an especially baffling and often excruciating disorder involving damage to the nerves. This can include the aching, whole-body pain of fibromyalgia, or the fiery pain that can follow an attack of shingles. But even a trivial injury such as a bruised knee can trigger it in some individuals. The body’s nervous system somehow gets stuck on the “pain” setting and won’t switch off, even when the injury has healed. This is the kind of affliction that erodes sleep, destroys the ability to work and can drive a person’s life right off the rails. Daily, grinding pain understandably breeds depression and hopelessness. It’s no wonder that spouses and family doctors sometimes run out of empathy when faced with this “looks good, feels bad” predicament – suffering that science can’t X-ray, quantify or cure. Of course, questioning the pain deepens the isolation of the person who must live with it.

What sets the Wasser Centre apart from similar clinics around the world is its unique combination of disciplines – it’s a leader in treating neuropathic pain, and it’s one of the few places in Canada with expertise in pelvic pain, in both men and women. In terms of research it has looked at the benefits of Botox for chronic pain, the usefulness of cannabinoids for people with multiple sclerosis, and it offers a “female-friendly” team for women suffering from vulvodynia, a form of chronic vaginal pain that is far from rare. A staff member, Dr. Doug Gourlay, is a leading expert in the area of pain and addiction, which can exist in a small but problematic percentage of patients.

In 1982, Dr. Gordon teamed up with David Mock, currently dean of U of T’s Faculty of Dentistry, to establish the country’s first centre for research into craniofacial pain at Mount Sinai Hospital. This led to the idea of creating a broader pain management clinic. In 1999, the centre was launched when a pair of philanthropists, Larry (BA 1978 Innis) and Marla Wasser, went to the hospital’s administrators and asked, “What needs funding most?” The answer was pain.

CHRONIC PAIN IS A TREMENDOUS challenge to the professionals who treat it. Often the patients who end up at the Wasser Centre have already been through a long gauntlet of specialists and dozens of medications. They’ve likely been bruised by the system, as well as their pain. And the longer their pain remains untreated, becoming entrenched, the more it turns into a thousand-piece puzzle for doctors down the line. Pain patients are tough cases – in part because traditionally, medicine has been slow to respond to the importance of treating pain. The health professionals who gravitate toward this field tend to be pioneers and mavericks – a brainy, brazen minority. The director of the Wasser Centre is no exception.

Dr. Gordon comes hurrying down the hall toward me. He hitches up his belt, hand-combs his dark curly hair and shakes my hand. With his easy manner and sense of humour, Dr. Gordon gives the impression of impish youthfulness, even though he is neither young nor impish – on top of which, as he cheerfully points out himself within five minutes of our meeting, he’s quite overweight. This is worth mentioning, I think. It was probably a factor in the back pain he experienced – useful for the purposes of empathy – but it also takes him off that doctor pedestal. Patients who meet with him can see that he’s not on perfect terms with his body either. Since the clinic believes in the importance of doctors and patients working in partnership, whatever fosters trust is good.

He leads me into his messy, document-stuffed office, where he moves a stack of blue binders off a chair to make room for me. He’s just back from a conference in Prague and is jet-lagged, but game to talk. The first thing I ask him is how it feels to spend so much time in the company of relentless suffering. Does he like this sort of work? “Well, boundaries are important in this field – you have to feel for the patient, while you remember that you can’t be that patient,” he says. “But when someone tells you they’re feeling better, that their pain is under control and they’re able to go back to school, or work, that makes me feel good. I think we’re doing some good here.”

Wheeling his office chair forward and back as he makes his point, Dr. Gordon talks fast, jumping from topic to topic, assessing a question from different angles at once – which is exactly what the Wasser Centre tries to do, in its team-based, patient-focused approach to pain. The clinic, which is affiliated with U of T, brings together health professionals from neurology, dentistry, psychiatry, anesthesiology, physiotherapy and occupational therapy. It includes acupuncture, biofeedback and other non-traditional ways of treating pain. It tries to address the whole person, since chronic pain tends to affect every part of someone’s life.

What does science have to say about an approach that’s so hard to quantify and evaluate? What does the team approach to pain do that a renewable prescription for OxyContin can’t? “Many studies have shown that the single most important determining factor in achieving a good outcome with chronic pain is the nature of the relationship between the practitioner and the client,” says Dr. Gordon. “We do our best here to practice empathetic care with patients who are burdened with complicated complaints.”

“I really like to put people at ease,” he says. “And for people in pain, having validation – the fact that I am not questioning or judging their pain – is important. I try to teach my fourth-year surgical students how to ask the right kinds of questions. The personal touch is important.”

NEUROLOGISTS, HOWEVER, are not known for their bedside manner, and Dr. Gordon started out in the field of neurology. A U of T graduate and medical professor, he was director and then dean of development for the Faculty of Medicine in the 1990s, when his focus was on fundraising. An early interest in neurological disorders such as muscular dystrophy led him to join a multidisciplinary group that was investigating chronic fatigue syndrome and fibromyalgia. These pain disorders have aroused a lot of skepticism among doctors in the past because they can include a whole constellation of symptoms and depend more on subjective accounts from the patient than on the usual evaluative tools, such as X-rays. But by using a multidisciplinary approach to look closely at these types of pain, “we saw that there was some neurobiological basis to all this.” The pain was real, even though the etiology wasn’t clear.

Dr. Gordon believes that the most effective way to help people with chronic pain is to form a “therapeutic alliance” with patients. They are expected to take an active role in their own treatment. In practice, this means hard work for the clinic staff, who spend a lot of time with patients, helping them develop relaxation techniques, cognitive-behavioural strategies and other ways to “self-manage” their pain and live with their pain more comfortably. “A big thing in dealing with chronic pain is to set reasonable goals. The traditional medical model is to diagnose, and then treat. But we’re about coping, not necessarily curing – a big difference!”

This difference between coping and curing makes it difficult to evaluate the effectiveness of a multidisciplinary approach to pain. “That isn’t easy to do,” Dr. Gordon admits, “and we’re just trying to find a good way to measure patient outcomes. Sometimes a ‘good outcome’ for someone with chronic back pain means that he can go back to work, enjoy sex again and get on with life – even though his pain ratings [on the zero-to-10 scale] haven’t gone down.” Pain management is as much about restoring quality of life as it is about addressing the physical aspect of pain.

Another tenet of the Wasser Centre is to bring a “biopsychosocial” approach to pain treatment. This is a scientific-sounding polysyllable that refers to an integration of skills. This can include physiotherapy, counselling, pain medication, sex therapy and anything else that addresses the fallout of dealing with chronic pain. People need to regain a sense of control over their lives, however slim. Many patients want medicine to rescue them; a feeling of having been abandoned often goes along with chronic pain.

“Medicine tends to be made up of isolated silos, and neurologists especially tend to be a little rigid that way,” Dr. Gordon says. “But our team tries to cut across the silos and work horizontally. Ten years ago, I never thought I would be prescribing acupuncture to my patients. And I’m pleasantly surprised at how useful things like cognitive-behavioural counselling can be. I find the contact with other disciplines stimulating.”

Nevertheless, despite this emphasis on emotional supports, Dr. Gordon spends a lot of his time prescribing pain medications. For the past decade, opiates in particular were the great white hope for treating non-cancer pain. But Dr. Gordon thinks that the next 10 years will see a shift away from these drugs. “Opiates are only one of several answers. They’re easy to get on, hard to get off and they come with complications. More and more, I believe that a behavioural approach, with the patient learning and practising self-management, is a key to ongoing success. The future lies not just in better drugs, but in a deeper understanding of how pain affects us.”

That – and more money. People don’t realize pain is a disease, Dr. Gordon says. The subject doesn’t lend itself to poster people, marathons or fundraising ribbons. “The main thing I worry about is money. I spend a lot of time worrying about where the next dollar is going to come from.” The annual cost of chronic pain to the Canadian economy (including medical expenses, lost income and lost productivity) has been estimated at more than $10 billion. Despite this elephant in the room, the funding and facilities for treating pain are, well, painfully limited. There are not enough multidisciplinary clinics in Canada – one for every roughly 250,000 people; Prince Edward Island and the Territories don’t have any at all. University curricula haven’t caught up to the need either; many medical students receive only a handful of hours of pain education. (University of Toronto is among the more progressive in this regard, devoting a week to pain studies for students from medicine, dentistry, nursing, physical and occupational therapy and pharmacy.) The neglect of pain is also reflected in the fee schedules of the health-care system, which doesn’t cover many pain treatments. Nerve blocks, for instance – local injections of anesthesia – are covered by OHIP, which makes them the golden egg for private pain clinics. But equally effective and costly pain treatments, such as Botox injections, are not. “The tipping point in pain care will come when government and other payers understand that chronic pain is a huge and expensive problem, and that the population deserves better,” says Gordon. “It’ll be cheaper in the long term to establish an integrated system of care. It’s already happening in Alberta and in Quebec, and it’s beginning to happen in Ontario.”

THE MORE INVOLVED the patient is in the treatment and learning new ways to cope with pain, the Wasser team has found, the better the outcome. “Too often, medicine is the physician doing something to the patient,” says Dr. Gordon. One of his patients, Catherine Seton, is a shining example of what a doctor-patient alliance can accomplish.

Wearing an optimistic orange coat, Seton arrives for our interview right on time, with her typed notes in a file. “I figure I should be at least as prepared and professional as my doctors are,” she says. Although her short hair is blonde, she is a “genetic redhead,” which, she explains, may be a factor in how she experiences pain. “Redheads use different nerve pathways to process pain,” she says. (Research by Montreal scientist Jeff Mogil has shown that redheads may feel pain differently from others.)

Seton has a complicated pain story that includes the joint and muscular pain of fibromyalgia, and migraine headaches – about 15 a month. We look for someplace quiet to talk, but the best we can do near my office is a Tim Hortons where one of the staff is noisily wet-vacuuming the floor. It’s like interviewing someone in a car wash, but Seton is focused and poised. As steam from the vacuum hisses behind us, she goes over her now-polished account of how a minor car accident in 1993 unleashed a small pain that grew into a “noxious weed” that took over her life. “I ended up with jaw, neck and facial pain, and I was later diagnosed with a mild brain injury. At the time, I was a high school teacher who taught English and drama. I loved my work, but after the accident I had to leave my job. I also went through a three-year argument with my private health insurer, who terminated me. So that was three years without income, or work. And in pain. My life was more or less in ruins, and the strain on our marriage – which survived – was serious.”

She went through a string of skeptical doctors, and tried 25 different medications. In 1999, she was diagnosed with fibromyalgia by a rheumatologist. “In 2002, I went to the Wasser Centre. The first doctor I saw there was a neurologist, Dr. Ralph Kern, who listened to me, asked me what my game plan was and said, ‘Think of me as your quarterback.’ The assumption wasn’t ‘Prove that your pain exists’ but ‘I accept that you’re in pain. Where do you want to go from here?’ The staff there understands that you’ve already had a long struggle.”

Dr. Kern recommended that Seton try acupuncture and visit a physiotherapist, “which was a good move,” she says. She also began a course of regular injections of Botox to help the headaches. “The Botox brings the volume of my migraines down, although it doesn’t prevent them.” It also costs about $1,800 per 10-week treatment.

The clinic also did tests that revealed why so many drugs didn’t seem to do the job for her; she is one of the nine per cent of Caucasians who are classed as “non-responders,” people who don’t metabolize pain medications the way most people do. “I also saw Dr. Gordon at the clinic. The first thing I noticed was the way he listened. He’s the best listener I’ve ever met in health care,” she says. “And he makes you feel in control of the process, which is rare. He manages to combine the qualities of a humanist with a scientist.”

Dr. Gordon also encouraged her to become co-chair of the first Wasser Patient Advisory Group. She has since become an eloquent patient advocate who has found a unique way to dramatize the issue of pain. In 2004, I happened to see her presentation, a performance from a series she created called “Speaking of Pain – The Story Project,” at a conference organized by the Wasser Centre.

Seton and three other chronic-pain patients stood on stage. Reading from scripts on music stands, they delivered a wellrehearsed, four-part dramatic monologue – a kind of string quartet of voices conveying what it feels like, emotionally, socially, professionally, sexually, financially, to live with pain. It was a powerful piece. “The audience has spent the day watching all these PowerPoint presentations on screen, and then all of sudden, there are real people on stage,” says Seton. “Just having a body in front of them instead of a slide makes a difference.”

In 2005, Seton delivered a one-woman performance called “Noxious Weed,” about the importance of addressing pain, to a World Health Organization conference in Ottawa. Seton has also appeared in several television documentaries on the subject. She may be an exceptional “graduate” of the clinic, but I think she is also evidence of a slow but steady shift in our perception of pain. When she first came to the Wasser Centre, Seton expressed relief to her neurologist for having been listened to and been taken seriously. “Welcome to the future of health care,” he replied.

If only.

Marni Jackson (BA 1968 VIC) is a senior editor at The Walrus and the author of Pain: The Science and Culture of Why We Hurt.