“Opioids have their place and are definitely a very powerful resource in caring for youth with chronic pain or acute pain. It’s just that there has to be more knowledge, more education for physicians and for patients.” – Rory, Patient Partner
Rory is a college student who has navigated chronic pain since her early teens. In her younger days, Rory would frequently end up in the emergency department as she navigated chronic pain. But her experiences of dismissal accumulated to the point that she stopped going to her town’s hospital even when the pain was at its worst.
“Eventually [my family and I] just stopped going because the hassle of having to go and sit in a waiting room for hours, just for the rare chance of my pain being taken seriously and receiving information about the medicine they are giving me wasn’t worth it,” says Rory. “More often than not, my pain would be dismissed, or they would prescribe me strong opioids but not explain the risks, benefits, proper disposal or use or anything.”
When Rory was 16, an emergency department doctor prescribed her Tramadol – an opioid – but rushed her through and didn’t provide information about the medication when Rory was discharged. This negative experience stuck with her:
“I’m sure I’m not the only person who’s ever experienced that,” she says. “To just give someone an opioid prescription without education and say, ‘OK, go on your way and in five days you’ll be cured. And by cured, I mean you’re not going to be our problem anymore.’ It just seems really problematic and it’s really probably one of the most frustrating things of everything… Why wouldn’t we educate the person who’s experiencing pain instead of just their parents? I know that there’s not always that opportunity, but there should still be some information. I think the education piece, talking directly to patients, is very important.”
To help address this gap, Solutions for Kids in Pain (SKIP) and its regional hub at the SickKids Pain Centre at The Hospital for Sick Children (SickKids) are working to extend the reach of opioid-focused educational materials for use during hospital discharges across Canada.
These resources were created as part of a quality improvement initiative by SickKids’ Pain Centre in partnership with the Hospital Medication Safety Committee. This work came as a result of Choosing Wisely Canada’s campaign, Opioid Wisely, based on the most recent evidence-based opioid-prescribing guidelines and standards. Over the course of this initiative, findings from interviews with surgical patients pointed toward a need to develop improved educational materials to support better communication between patients/caregivers, health professionals and prescribers.
“Why wouldn’t we educate the person who’s experiencing pain instead of just their parents?”
Now, SKIP is looking to adapt these resources in partnership with institutions beyond SickKids to improve safe, equitable, effective and evidence-based opioid use for pain management in children and adolescents when they are discharged from hospitals and, in Rory’s words, to “help educate the person who’s experiencing pain.”
Rory’s most supportive experiences navigating chronic pain came when she was connected with a specialized pediatric chronic pain team in her hometown. “They both just came into the room and were like, ‘OK, everything that you say is the truth … we’re not assuming that you’re making it up or over-exaggerating.’ And it was like that immediate sense of trust … The fact that they were the ones in my corner made me feel less crazy about (the pain).”
These positive experiences are at the core of the first national Pediatric Pain Management standard, published in collaboration by SKIP and the Health Standards Organization. The standard places children and families as equal members of the health team, recognizing patients as experts on their own pain and creating space for their experiences to be respected.
Providing youth and families with education and treating them as partners can play a critical role in maintaining trust and ensuring good health outcomes. A lack of knowledge and education about her medications and being told ‘it’s all in your head’ in the emergency department has influenced Rory’s willingness to seek treatment for a long time: “It definitely affected my trust in the medical system.”
Through the “Youth in Pain: Solutions for effective opioid use” initiative, SKIP is working in partnership to make pain matter, to make pain better, and to make pain understood. Together, we can work to avoid the harms caused by stigma and lack of education on opioid use for pain management.
Repairing trust is a long process, but – in the words of Rory – a great place to start is with more knowledge, more education for both physicians and patients.
Are you a health professional interested in adapting educational materials on opioid prescribing for youth receiving care in your hospital setting? Please contact SKIP Knowledge Broker, Raad Fadaak, at raad.fadaak@ucalgary.ca for more information on how to collaborate with SKIP!
The comments section is closed.