Chronic pain: do patients get the care and treatment they deserve?
Lynn Cooper compares the feeling of chronic pain to a blisteringly bad sunburn that simply won’t heal.
“Remember how you could barely put clothing over where you had that sunburn?” asks Cooper, the president of the Canadian Pain Coalition. “Imagine that pain never going away. That’s what it’s like for someone who has neuropathic nerve pain that is burning and relentless.”
Cooper knows first-hand the fear, frustration and loneliness a diagnosis of chronic pain can bring: she has suffered severe pain since being hurt in a workplace injury nearly 30 years ago.
Like most, she initially believed her pain was temporary and could be fixed with the right treatment. But after three years in which her pain actually got worse – moving from her lower back down her legs, into her toes and eventually triggering debilitating migraines – she was finally diagnosed with chronic pain.
A long wait is not unusual for those in pain. While wait times to see a pain specialist are difficult to track and vary widely, a telephone survey conducted by the Canadian Pain Coalition for their 2014 “Painful Truth Report” found that chronic pain sufferers waited, on average, nearly 18 months to see a specialist. Anecdotally, physicians and patients said wait times to see a pain specialist could be anywhere from nine months to a year but could reach as high as five years.
The longer chronic pain goes unaddressed, the more disabling it can become, with patients often plagued by sleeplessness, anxiety or depression. Research shows that individuals living with chronic pain have double the risk of suicide than individuals who do not have chronic pain.
With some prescription pain medications receiving additional scrutiny, those treating pain are turning to techniques that use a mix of health services – like acupuncture, exercise or psychological techniques – in an attempt to provide relief.
A silent epidemic
Recent figures for the frequency, or epidemiology, of chronic pain in Canada are hard to come by – a reflection of the under-investment in pain research, some say – but a 2011 study shows at least one in five Canadian adults suffer from chronic pain (described as persistent pain that lasts longer than six months).
The source of that pain can be anything from a sports injury to a workplace injury, aging, a car crash, surgery or even a chronic condition, such as arthritis or diabetes, which can lead to debilitating nerve damage.
In a 2008 examination of costs related to chronic pain in Canada, direct health care costs were estimated to be more than $6 billion per year, while productivity costs related to job loss and sick days were estimated to be $37 billion per year.
“It’s a silent epidemic,” says Hance Clarke, director of pain services and medical director of the Pain Research Unit at Toronto General Hospital. “You may be suffering in pain, but no one can see it. You’ve got all your limbs, your lungs are working fine, your heart is working fine, you’re not dying of cancer. But you’re living every day with disability. People find it’s often pretty isolating.”
Identifying the risks for chronic pain
There are myriad factors that can contribute to or exacerbate chronic pain, says Hillel Finestone, a physiatrist at the Bruyère Research Institute and an professor in the Division of Physical Medicine and Rehabilitation at the University of Ottawa.
He points to risk factors such as a history of depression or anxiety, a sense of despondency, poor sleep patterns or complicating conditions like obesity, diabetes or even smoking.
“We have to have things in place for family doctors to be able to recognize the risk factors quickly, with the idea that the outcome will be better,” he says.
Given the long wait for specialist help, many chronic pain patients rely on primary care providers for pain relief.
“You can’t ignore a patient’s pain while they’re waiting two years to see a specialist,” says Cassandra Millar, a family physician in Calgary who says time is one of the biggest challenges when it comes to treating chronic pain patients.
“If you’re going to spend enough time with the patient to get to the root of the issue, it can sometimes take up to an hour per visit. They have to feel a sense of trust. People really have to get down to the nitty-gritty of what’s happening in their life, the stress and psychology of their pain,” Millar says.
Ruth Dubin, chair of the College of Family Physicians Chronic Pain Committee and a Kingston-based family physician specializing in chronic pain, agrees.
“For many primary care providers, [chronic pain patients] are time consuming: they’re not only depressed, they’re anxious, their function is poor and they’re complex,” Dubin says.
“It can be very frustrating because we know the best treatment for chronic pain is multidisciplinary care – cognitive-behavioural therapy or physiotherapy or occupational therapy, possibly in addition to medications or other interventions. But often, as a family doctor, I just don’t have access to that kind of support,” says Samantha Green, a family physician in Toronto.
Patients may also have unrealistic expectations of a cure.
“There is a mindset that says if they can just take a pill, it will cure everything,” Green says. “And because of that, if a patient comes in with chronic pain and I don’t give them a prescription for a medication, sometimes there’s a view that either I’m not helping or I don’t believe them.”
Education is key, she says, both for patients needing to understand what can be expected when treating pain, and for physicians looking to provide help.
Better treatment through better education
A particularly startling fact about pain management in Canada is this: a 2010 study found students training to become veterinarians receive five times the hours of training in pain management that students training to become physicians get. Vets receive 87 hours of training; family doctors might get as little as four hours, and less than an hour on addiction.
Dubin is co-chair of Project ECHO Ontario, which uses telehealth technology to develop expertise in pain management amongst family physicians.
Unlike a typical referral, in which only the patient sees the specialist, Project ECHO uses video-conferencing to put the primary care provider and specialist together to talk through the case.
Pain specialists do not take over the patient, Dubin says, but they support the primary care providers so that they can gradually become experts with the confidence to treat complex pain patients.
“It moves knowledge, not people,” says Andrea Furlan, Dubin’s co-chair at Project ECHO Ontario and staff physician and senior scientist at the Toronto Rehabilitation Institute. “For us, as the specialists, it’s very inspiring to see how they care for their patients. It’s also motivating: if someone in Sioux Lookout is managing to prescribe Suboxone, why can’t I?”
Project ECHO Ontario’s specialists can also fast-track patients who need critical interventions from a specialist, Dubin notes.
“That’s really how ECHO improves access,” Dubin says. “Patients have access to best practice care in their home communities, the primary care providers know they can always come back to ECHO to say they tried something, it didn’t work, what are your thoughts?”
Stricter drug funding and prescribing rules may affect pain management
New regulations around prescribing potentially addictive opioids in British Columbia and reduced funding for high-dose narcotics in Ontario are putting extra pressure on the health system to better treat and manage pain patients.
Earlier this month, Ontario announced a new opioid strategy that expands access to naloxone overdose medication and increases access to Suboxone addiction treatment, tightens controls on fentanyl patches and delists high-strength, long-acting opioids.
The strategy also includes setting evidence-based standards for prescribing by 2017 and a $17 million annual investment in Ontario’s Chronic Pain Network. Funding announced by the federal government in March will expand multidisciplinary care teams to help reduce wait times for pain treatment.
That funding has already dropped wait times at Hamilton’s Michael G. DeGroote Institute for Pain Research and Care from nearly two years to about two months, says Norman Buckley, principal investigator at the Chronic Pain Network.
The centre was already set up with a multidisciplinary care team and therefore could quickly begin meeting targets, he says. “Practically speaking, that money is just starting to have an impact now,” he says.
The network, meanwhile, will focus on new research, training for researchers and clinicians, accelerating research into the reality of care and improving access to care for chronic pain patients.
Closing the gap between feeling pain and getting help is vital to patients – not just for the pain, but also for their pocketbooks. The Canadian STOP-PAIN Research Group reported in 2010 that patients waiting to access pain clinics spent a median of more than $17,500 per year, the vast majority of which went to indirect expenditures, such as lost labour time and paying out-of-pocket for private health care treatments such as physiotherapy or massage.
“You have to have extended health care coverage or you pay for things like going to a psychologist or a social worker or a dietitian or a physiotherapist or an occupational therapist,” Cooper says. “I have an incredible physiotherapist who’s helped me out a great deal, but I have to save in order to be able to go to him.”
Mixing traditional and alternative medicines to provide multidisciplinary care
Recognizing the value allied health services can have in managing or preventing pain is transforming care at specialized pain clinics.
At Toronto General Hospital, Clarke leads a first-of-its-kind transitional pain centre that identifies patients at risk of developing chronic post-surgical pain using measures of the intensity of their pre- and post-operative pain, opioid use and signs of depression, anxiety or a predisposition to fixate on their pain. It then provides access to a mix of support, including acupuncture, exercise, psychological techniques and non-opioid pain medications.
The clinic is setting out to determine whether this type of multidisciplinary care can prevent the transition from acute to chronic pain and reduce suffering, disability and health care costs.
“It’s about giving people the tools to deal with the emotional underpinnings of the pain of the situation they’re in,” Clarke says.
For Cooper, that’s ideal.
“Right now, the best care is multidisciplinary care because pain impacts every aspects of our lives,” Cooper says. “It impacts our bodies, our physical life, our emotional, psychological, spiritual lives, our work, our family and our social lives. It impacts everything.”
That’s why chronic pain sufferers are also being encouraged to practice self-management.
For about a decade, the Ontario Ministry of Health has funded workshops for chronic pain patients across the province that emphasize the importance of pacing, planning and prioritizing tasks, while also introducing mindfulness – a practice of meditation and other techniques to influence a person’s perception of their pain – as a way of coping with pain.
The workshops – some lasting six weeks and involving peer support sessions – are designed to help participants recognize that while chronic pain may not have a cure, it can at least be managed.
“If you don’t understand that your body is living in chronic pain, you tend to wait for the pain to get better or to leave you,” Cooper says.
“If there’s nowhere that you can learn to intervene and also get help from health care providers to intervene, then it becomes a downward spiral into what is recognized as a pain-centred life.”