A new national Pediatric Pain Management standard will foster “better, more open communication on pain management and alternatives between patients, their families and health care professionals,” says Natasha Murji, a User Experience Designer and Patient with Lived Experience.

Together, Health Standards Organization (HSO) and Solutions for Kids in Pain (SKIP) are working on the development of a new Pediatric Pain Management standard, which will be a National Standard of Canada. The draft standard will be available for public review and feedback at the end of November.

Murji, who is part of the Working Group developing this standard, notes that it can be challenging, especially for younger and/or chronically ill patients, to navigate the health system and actively participate in discussions and/or decisions about the management of their pain. She says that with chronic illness, there comes a loss of independence. “I think this standard will help children and teens better advocate for themselves and to feel heard,” she says.

The new standard aims to improve the quality and effectiveness of equitable, evidence-informed, people-centred, trauma- and violence-informed, culturally safe, pediatric pain management for children and their families across the continuum of care and in diverse health care settings. It will be used to guide practice, related professional development offerings, policy development and quality improvement initiatives related to pediatric pain management, spanning across infancy to late adolescence (up to 19 years of age).

Stephanie Paravan, a Family Partner and parent of a medically complex child, says this new standard is important as it will ensure children across Canada will receive consistent care using established best practices for pain management. “I really hope that having this standard will ease the difficult situation of managing pain, not just for families, but also for health care professionals,” Paravan said. “As it will give them a clearer path on how to develop a plan for a child who is experiencing pain.”

Paravan, who is also a member of the standard’s Working Group, adds that when her child first entered the medical system, it was very difficult to sort out what her child’s pain level was, what the best course of action was or even who the family should be speaking with to address her child’s pain needs. “This standard will provide more transparency about what should be expected for children and youth in managing their pain with their families,” she says, adding that “more information needs to be made available to families about what is acceptable for pain treatment wait times and who they need to speak to when their child is experiencing pain.”

Paravan notes that she wanted to be part of the development process for this standard as her child, who is medically complex, is also non-verbal. She says that in her experience, there are not many guidelines in place to help health professionals address these specific needs. “Previous standards or policies don’t provide guidance on how to work with children and youth who communicate differently,” she says. “I wanted to make sure we included information that directly relates to children who are non-verbal or who communicate differently.”

Another important aspect of the new standard, Murji says, is that it addresses the presence of trauma.

Murji adds the new standard encourages health care professionals to listen and to take a more empathetic approach to care. She notes that as a chronic kidney disease patient herself, having been in and out of the hospital since the age of 11, sometimes a patient – child or adult – simply needs to feel acknowledged and heard. “It might ease some of the patient’s pain and it only takes a few minutes of a health care professional’s time,” she says. “It’s about giving the provider the chance to connect in the most empathetic way possible, as there’s much more to a name on a chart.”

Murji adds that this acknowledgment in the standard of trauma and emotional distress will also help family members and caregivers, as they see all aspects of the acute and chronic pain their loved one is experiencing. “We’ve acknowledged that lens and I think it’s very important for family members/caregivers to see that being honoured,” she says.

In terms of working towards more empathetic care, Murji shares that she had two failed surgeries previously, as a line had been placed incorrectly, and she was very anxious going into a third procedure. She explains that a nurse she had come to know came down to the operating room to see how she was doing. “Just the few minutes that she took to come check on me, that put me at ease as a patient. It allowed me to feel more relaxed going into the surgery and it allowed for a more positive experience,” she says. “It provided a more empathetic experience and made a positive difference in care. I hope the standard can pave the way for more of this type of care.”

Murji notes the new standard also aims to make a difference in the Canadian health system by encouraging more open discussions between patients and providers about pain management alternatives.

Murji says that in her experience as a long-time patient, health care professionals can be quick to dismiss alternative forms of pain management such as acupuncture and herbal remedies, to name a few. This dismissal, she says, can push patients to seek alternative forms of care without discussing this with their main care team, which can have serious and/or fatal consequences in some cases, if complications occur. She adds that patients need to feel able to openly discuss alternative forms of pain management they are interested in. “Because whether you like it or not, patients – especially when they’re in pain – will turn to options that are not necessarily prescribed,” Murji says.

Murji says she wanted to be part of the development of the national Pediatric Pain Management standard to advocate for other patients, to share her experience as a long-time health system user and to change her past negative experiences into a more positive one. “I had very traumatic medical experiences as a child, and these experiences have impacted my experiences in the adult hospital,” she says. “I wanted to turn this into a learning opportunity, so that other patients don’t have to experience what I’ve been through. It’s the opportunity to make a difference.”

Paravan adds that “it’s very important” for patients and families to be involved in the development of any new standard. “It’s a way to empower patients and families in managing their own healthcare and it acknowledges the fact that patients play a very important role when it comes to decisions on treatment,” she says.

Are you a patient, family member, caregiver, health care professional or health organization with experience in pediatric pain management? Make sure to review the draft standard and share your feedback through HSO’s public review process, targeted to launch on Nov. 22, 2021.

Please stay tuned and follow #ItDoesntHaveToHurt for updates.