Leaders in pediatric care
Getty images
Canuck Place Children’s Hospice empowers families with lived experience
There may be nothing more disconcerting for the parents of a terminally ill child than to feel they are being left out of important decisions about their child’s care and their own well-being at a very difficult time in their lives.
Pediatric clinicians will often simply tell families what’s happening to their child and what the care plan will be without providing an opportunity for open, two-way communication.
It’s a challenge that Canuck Place Children’s Hospice recognized and has taken steps to address through the development and implementation of the Serious Illness Conversation Guide - Pediatrics (SICG-Peds) to train clinicians in the art of communication.
Camara van Breemen, a nurse practitioner and enhanced community care lead at Canuck Place, says it’s absolutely essential for clinicians working with serious pediatric illness to have competencies in communication.
“These are mothers who have had many challenging conversations in healthcare. Having them come on as faculty giving clinicians direct feedback was very powerful.” ”
“Complex communication is a skill and a competency that takes time, energy and investment by the clinician to master. We need to know how to communicate support and help parents and children make decisions about what is good care and what isn’t good care,” says Ms. van Breemen.
The guide used at Canuck Place was adapted in 2018 from a tool developed by Ariadne Labs at Harvard University to guide clinicians in how to communicate with patients and families through a systematic approach to serious illness conversations by asking questions and listening.
“We want parents as partners and decision-makers with clinicians. But the art and the competencies around giving information and eliciting family values is a tricky landscape,” she adds. “Unless we enter into conversations with families that elicit their understanding of the condition and explore how much information they want about what’s ahead, we can miss the mark very easily.”
The keys to effective communication with parents is for clinicians to ask the right questions and listen more than talk so that parents feel heard and understood rather than feeling that they are little more than bystanders in their child’s care.
“Novice physicians in particular find the guide very useful. First and foremost, it emphasizes permission and respect and outlines how to engage in a conversation, how to set it up, and how to assess understanding,” she says.
By asking questions, listening and avoiding condescension, clinicians are able to assess whether parents have an emerging understanding of where their child is at in their diagnosis and whether they are overestimating their child’s wellness or underestimating it, says Ms. van Breemen.
Between 500 and 600 clinicians in Canada have been through the training Canuck Place provides since mid-2018, and it has been adapted for use in South Asia where they have trained more than 100 clinicians.
A year ago, Canuck Place added four Canuck Place parents to the SICG-Peds training team.
“We wanted participation by parents who had had a seriously ill child and experienced the death of a child,” says Ms. van Breemen. “These are mothers who have had many challenging conversations in health care. Having them come on as faculty giving clinicians direct feedback was very powerful.”
Sarah Ho is one of the four Canuck Place parents. Her son Mitchell died in 2008. He was 11. Being part of the training team gives her the opportunity to contribute a personal perspective to the workshops.
“Doctors will often come in to see parents of a sick child when they are ready and when it suits their schedule. They don’t ask permission, and they don’t ask if it’s a good time to talk. We are given the information they think we need to have. They tell us what needs to happen, and then they leave,” says Mrs. Ho.
On the other hand, clinicians who follow the conversation guide make parents feel they are being heard, acknowledged and validated, and leaves them better equipped to make informed decisions about the care for their child.
The guide shifts the perception that clinicians hold all the power in the relationship, says Mrs. Ho.
“When someone takes the time to ask what’s important to my family, and wants to know a bit more about my son who is nearing the end of his life, all of a sudden that empowers me as a parent to have my voice heard and to speak out about what’s important to me. It allows us to move forward in less of a stressful crisis management mode and develop a better care plan,” she says.
One of the more surprising aspects of the SICG-Peds training for Ms. Ho is that clinicians with many years of experience are willing to participate in the workshops and learn new skills.
“I had a clinician in a workshop who was 30 years into his practice,” she says. “He said he was there to hear from the families. That validated for me that my voice really matters.”
Canuck Place allows families choices – not only in choice of care, but choice in how and when they are communicated with, says Ms. van Breemen.
The SICG-Peds training offered by Canuck Place aims to revolutionize the way clinicians interact with families going through the most unimaginable circumstances. When families are understood, consulted and validated, children with short lives are able to have the gift of great days, she says.
Canuck Place mother Sarah Ho with her son, Mitchell, who passed away in 2008 when he was 11 years old. Mrs. Ho is Family Faculty instructor for the Canuck Place Children’s Hospice Serious Illness Conversation Guide - Pediatrics, which has educated over 700 clinicians globally. supplied
More information: canuckplace.org
To view this report on The Globe's website, visit globeandmail.com
To view the full report as it appeared in The Globe's print edition: Philanthropy in Canada