Palliative-care study brings hope of new support strategies
What happens to a family caring for a dying child? How do parents of children with life-threatening illnesses prepare for a time when their child is old enough to make their own choices around medical care?
A team of Canadian and U.S. researchers led by Dr. Hal Siden are studying myriad issues relating to the palliative care of children as part of a five-year project funded by the Canadian Institutes for Health Research. Research work got underway in 2004, with a focus on clinical problems, family care, and health services.
“When people hear the term ‘palliative care,’ they tend to think of the elderly in the last weeks of their life, or someone with cancer. It’s all very much about the terminal phase,” says Dr. Siden, a clinical associate professor at the University of B.C. and a member of the Integrated Pain Services team at BC Children’s Hospital.
“But in pediatrics, what we’re talking about are children who have any disease or a condition that means they are not going to make it to full adulthood. Some will have days, some will have a decade. Palliative care will need to integrate with their entire life.”
Medical advancements have brought about tremendous change in child palliative care, says Dr. Siden. People now live long into adulthood with diseases such as cystic fibrosis and muscular dystrophy, to the point that some conditions no longer make the list of child health issues requiring palliative care.
“The issues around the transition from child to adult become more important with those kinds of changes,” says Dr. Siden. “Heart disease, for instance – these children still live with a question mark over their heads, but they didn’t even used to make it into their teens.”
The wide-ranging research topics being studied by Dr. Siden’s New Emerging Team include a study into the psycho-social needs of families, which aims to produce evidence-based research pointing the way to the most effective interventions and strategies. Other studies look at how doctors make decisions, or how Asian culture affects palliative care; another is examining how teenagers participate in their own decisions around care.
Sometimes, those decisions may involve choosing not to continue with medical treatments that are keeping them alive, notes Dr. Siden.
“In some ways, they stay immature for very long time because their parents baby them. Then they flip into adulthood all at once,” he says.
“We’ve had a number of teenagers with lung disease who have reached that stage and refused to be on a ventilator anymore. I can think of three who chose to go off the ventilator. For them, it was the right thing to do, but it’s very hard for their parents to face a decision like that.”
As medical director at Canuck Place Children’s Hospice – the provincial hospice for children – Siden has a real-world lens for understanding the potential impact of the research his team is working on. One new program at Canuck Place grew out of a social worker’s keen observation that a group of young hospice patients with muscular dystrophy – whose families brought them there for respite every now and then – were prone to talking to each other long into the night about the big issues in their lives.
The conversations would veer from topic to topic: Girls, their illness, what each other’s parents had told them about their conditions and what it meant in their lives. But the young teenagers were clearly enjoying the opportunity to compare notes with other youth like themselves.
“The social worker got the idea of starting weekend groups that bring kids together to talk about their diseases, and to take part in activities that are a mix of fun and therapy,” says Dr. Siden.
“They’ll talk about things like self-sufficiency, or who their relationships are with. But they’ll also do the Grouse Grind, or the ropes course at UBC. It’s been a tremendous growing experience for them.”
Dr. Siden is one of five core investigators and 25 collaborators working on the CHRI-funded project, the first research project to focus on pediatric palliative care.
This Researcher Spotlight article was provided by the BC Child & Youth Health Research Network (CYHRNet). To read more CYHRNet spotlights on BC Researchers, visit the CYHRNet website at www.cyhrnet.ca