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In the News

Press Release, 12/04/2013
Helping Families Make Tough Health Care Decisions: Innovation at CHEO changes young lives around the world. 
Click here to read the full announcement.

The Ottawa Citizen - December 4, 2013
CHEO leads way in involving families in care decisions
By Elizabeth Payne

OTTAWA — Doctors don’t always know best, it turns out; sometimes patients and their families know better.

That is the theory behind the revolution in patient-centred decision making. When patients, and their families, play a role in making informed decisions about health care, their health often improves, research is finding.

The theory has long been used to improve care and outcomes for adults. The Ottawa Hospital has led the way. Its research institute established the Patient Decision Aids Research Group in 1995. But the concept of patient-centred decision making has seldom been applied to children.

That is changing at the Children’s Hospital of Eastern Ontario where an electronic library has recently gone online to provide material that should help families make tough decisions about their children’s’ health care.

CHEO, which began working on it in 2009, now has the first pediatric hospital-wide decision support program in the world, said Dr. Margaret Lawson, medical director of CHEO’s Family Decision Services.

“Patients and families are the most underutilized resources in health care. We need to listen more to what matters most to them, and to their values and experiences so they can receive the treatment that is right for them.”

The idea of shared decision making, complete with a library of information and tools to help families (, is becoming a routine part of care at CHEO.

Lawson calls it “a real cultural shift.” At first, she said, many health-care providers were uncomfortable with the idea of suggesting to patients that there is no perfect treatment in some cases; that there is more than one option. Choosing the right option for a patient can only be done with direct input from the patient and his or her family.

“Health care professionals are no longer the only source of information,” she said. “We need to respect the information (families) bring to the table. They are the experts. They know more than anyone which benefits and harms matter most to them.”

Lena Lambert says the system helped her family decide that an insulin pump would be best for her 10-year-old daughter Malorey, who was diagnosed with diabetes at 18 months.

The decision to switch from injections to an insulin pump involves commitment and some changes by the patient and their families. Lambert and Malorey were given questionnaires that, along with conversations with social workers and their physician, helped them to weigh the factors involved in the switch.

The family considered everything from the potential cost, to whether more frequent blood testing would be a problem, to whether Malorey would be self-conscious about having a visible sign of her diabetes.

The process, she said, helped the family get involved in the decision. And, according to Lawson, that leads to better results. “If you are involved the decision, you are more likely to follow through with it,” said Lawson.

When the diabetes clinic ran a pilot project on the shared decision system, it was so successful that now it will be offered to all patients and their families.

Research has underlined the fact that families are not as involved in health decision making as they want to be. Research also shows that lack of family involvement contributes to unwarranted practice variation, undermines evidence-based practice and threatens patient safety, according to CHEO.

“At CHEO we are committed to providing an exceptional patient experience and an important part of that is engaging kids and their parents in their treatment,” said CHEO president Alex Munter.
© Copyright (c) The Ottawa Citizen

CBC Radio, Ottawa Morning - 12/12/2013
Click here to listen to Family Decision Services' Medical Director, Dr. Margaret Lawson interviewed on CBC Radio.
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