Children’s pain management over the last 50 years: It’s time to bust out of our silos!
Submitted by: Christine T. Chambers PhD RPsych, Killam Professor and Canada Research Chair in Children’s Pain, Dalhousie University & IWK Health Centre
It’s hard to believe now, but as recent as the 1970’s and 80’s it was widely believed that babies, especially premature babies, weren’t able to feel pain and that it was too risky to use anaesthetics with them. Instead of proper anaesthesia, it was standard practice to give these babies only drugs that would paralyze them so that they wouldn’t move during surgery. They were given nothing for pain.
How did things change? It took the combined power of science and one brave mother to make a difference. A scientist named Sunny Anand published a landmark research paper in 1987 comparing a group of babies who received proper pain management for surgery to those who did not. They found that it was the babies who received inadequate anaesthesia who had more complications and were more likely to die after surgery than those whose pain was managed properly. Around the same time, a brave mother, Jill Lawson, whose premature baby Jeffrey died after surgery, went public with her son’s inadequate pain care in a high profile story in the Washington Post. There was a major public outcry. The practice quickly became unacceptable.
While we’ve made major improvements in managing pain in some areas, there are still many ways we are failing children with pain. Studies have shown that hospitalized children continue to report undertreated and preventable pain, including high rates of procedural pain. For example, Stevens et al. collected data on procedural pain assessment and management practices at eight children’s hospitals across Canada and showed that approximately 80% of these hospitalized children experienced at least one painful procedure over the last 24 hours (the average was six procedures per child) and more than two-thirds of these children had no documented pain management intervention (pharmacological, psychological, or physical) for these procedures. Inadequate pain management is also reported for children following surgery and in the context of chronic pain. Poorly managed pain can result in many negative short- and long-term effects, such as delayed healing, altered brain development, pain sensitization, and healthcare avoidance.
Canada is a world leader in children’s pain research: the State of Science and Technology in Canada (Council of Canadian Academies, 2012) identified pediatric pain as the #1 research cluster in Canada vis-à-vis the rest of the world (by bibliometric analysis). Effective treatments exist. Yet Canadian children and their families continue to report undertreated and preventable pain with barriers to evidence uptake, such as a lack of accessible resources and training (for patients, caregivers, and health professionals) and failure of the public and institutions to recognize and prioritize pain management. At present, only one Canadian health institution has ChildKind certification, a marker of institutional commitment to pain management.
There are examples of successful knowledge mobilization initiatives in children’s pain management. These include the “Pain Squad” app for pediatric cancer pain patients developed by Dr. Jennifer Stinson and colleagues, the Online Pediatric Pain Curriculum led by Drs. Bonnie Stevens and Fiona Campbell, the "Be Sweet to Babies" initiative led by Dr. Denise Harrison, and the CAPHC Pain Toolkits (for acute procedural pain, acute presenting pain, and chronic pain) that were developed by the CAPHC Pain Community of Practice (CoP)
We also led the successful CIHR-funded “It Doesn’t Have To Hurt” initiative for parents to raise awareness and improve use of evidence-based pain management strategies. The initiative was a partnership between scientists, media (Erica Ehm’s YMC.ca, which has a reach of over 6 million Canadian parents per month), parents, and various partners, including CAPHC. In just one year, “It Doesn’t Have to Hurt” generated >150M content views worldwide, trended nationally on social media several times, and demonstrated increases in parent awareness and use of research evidence about children’s pain management. It also won 9 awards and was featured in The New York Times, The Globe & Mail, and on CBC’s The National. The initiative even attracted the attention of Twitter Canada, who invited all the stakeholders involved in the project to their headquarters for a special event, and offered the opportunity to engage with parents live via video online using their Q&A app.
Despite our successes, we still have a long way to go when it comes to ensuring that every Canadian child experiences the best evidence-based pain management. The reality is that most of our attempts to improve pain management in children are isolated and uncoordinated. We need to find a better way - bust out of our silos - if we truly want to bring about transformative change in how we think about and approach pain management in children. We need to tear down our institutional and disciplinary walls and establish new and different partnerships to make a difference for children in pain. We need to take the problem of pain in children public. Change needs to happen at all levels; and the public being aware of and expecting evidence-based pain management is a powerful motivator. We need to promote mentorship and networking; there is a lot of re-inventing the wheel when it comes to individual units’ and institutions’ efforts to improve pain management. We need to better leverage and spread our successes.
We shudder now to think that 50 years ago it was ever acceptable that babies underwent surgeries without anaesthetics. Let’s make sure that 50 years from now, when we look back on today, we don’t have more regrets about what we should have been doing differently for children in pain.