From the depths of a parent's worst nightmare, Theresa Malloy-Miller has emerged as a tireless advocate for the patient's voice in Canadian health care.
As one of Canada's original patient safety champions, Theresa Malloy-Miller is also a full-fledged member of a club that no-one wants to belong to.
It's a sad fact that most of this country's strongest voices for improved patient care draw strength for their advocacy from a frequently tragic personal experience with the health delivery system. Theresa is no different. She and her husband Tim took their 17-year-old son Daniel to a London, Ontario hospital in January 2003 with what they suspected was a severe case of the flu. Four days later their boy was dead. An autopsy confirmed myocarditis, a heart infection that can cause rapid onset of heart failure.
That hospital experience left the Millers reeling with shock and grief, but also confounded by a succession of missed signals, poor communication and medical mistakes they fervently believe reduced their son's chances of survival. The hospital stonewalled at first, but the couple's ongoing search for answers eventually culminated in the first patient safety conference ever held in London. It also opened the doors for Theresa to become one of the two patient advisors on the Quality and Patient Safety Committee and the Co-chair of the Patient Experience Committee. After numerous internal and external reviews of Daniel's death, hospital procedures were modified and communication guidelines strengthened. It took four years and a change in hospital administration, but the Millers finally received an apology. Daniel's story is still used at London Health Sciences Centre in staff education sessions.
Theresa was still burdened with a mother's grief in 2006 when she first heard, almost by accident, about a conference being held in Vancouver later that year to create Patients for Patient Safety Canada, a group of committed individuals charged with promoting the patient and family voice in the health care system.
"Daniel had passed away in 2003; it was three years later," Theresa recalls over the phone from her home in Delaware, Ontario. "You know, your life stops, you search, and I was at that point of needing to do something." She contacted one of the conference organizers, Ryan Sidorchuk, then Canada's first global patient safety champion who was selected for a multi-national summit with the World Health Organization's World Alliance for Patient Safety in London, England, in 2005. He invited her to attend the inaugural Vancouver meeting. Theresa did and she's been an active member of Patients for Patient Safety Canada ever since, working on quality control and the patient experience at her local level while spearheading research and knowledge transfer initiatives nationally.
"I was really reaching for something," she says of those early days. "I think when you lose a child it just turns your life upside down. So my life was nothing like what it was before anyway. It was in disarray. "I think Patients for Patient Safety brought me back to a more similar style of how I approach things. Always if I set a goal and I have a plan I'm comfortable in that space. It brought me probably to a more familiar place at a time when nothing was familiar." Working alongside other volunteers, many of whom had suffered similar adverse experiences, was a healing experience for her. "You can't move forward in patient safety by yourself. The task is too large. So being part of a group is just more effective. You get inspired by what other people are doing and the group opens up opportunities."
The patient safety work also gave her a way to channel some of the anger she was still carrying, Theresa adds, "absolutely. The anger is indescribable. Anger that I never envisioned could be possible. Certainly it gave Daniel a voice which was really important to me."
Ask her what the most encouraging development she's seen in health care over the last 10 years is and Theresa is quick to answer. "The central thing I see is the acceptance and the need for a patient family voice in health care. It is so central now in how health care is going to progress." Allowing that the person who has the health needs to be at the centre of the health care equation is just a dramatically different approach from the way it used to be", Theresa says. At the time of Dan's ER visits Theresa felt that their views and information were not considered. "We knew a lot about Daniel and all of the people who interacted with us never wanted to hear our view. And it was the crux of why it didn't work out. The only way forward in health care is for the person who has the health need to be at the centre of that circle."
If she had but one message to pass on to health care providers, it would be, "as people we all have health needs and we're all on the same team. There's only one team when it comes to health."
Unlike many of her patient safety counterparts who regularly weave their personal loss into their public advocacy work, Theresa stopped telling Daniel's story at patient forums a few years ago. It was just too difficult for her. Every time she revisited the story she'd need weeks to recover. But she has no doubt that Daniel, who was always a peacemaker among his friends, would be proud of the positive force for change that his mom has become. Theresa has recorded Dan's story in video form, a long version with her husband Tim and a shorter version with the help of CPSI. Both of these videos continue to be viewed.
Theresa has put her focus into contributing to patient safety issues. She is the chair of the Knowledge Transfer Working Group of PFPSC. This group of PFPSC members, with the help of CPSI staff and in partnership with the WHO, has been able to bring many topics related to patient safety to an international audience. At a local level, she brings a patient voice to hospital safety and quality projects and measures. As part of the hospital-based Patient Experience Committee, she is able to add input into hospital policies like disclosure and family visiting, as well as contribute to local patient safety education sessions. There are many ways to contribute to patient safety.
When Theresa reflects on what pushes her to continue to be involved in patient safety, Dan's voice comes to her quickly. "His favourite thing that he'd always say to me was, 'you are so annoying,' Theresa says, with a little laugh. "It's something that's stuck in my head. As much as I was devastated, at those really low points I would hear him say that. 'You are so annoying.' I think he would expect me to do something positive and not just sort of wallow in the pit." Being part of PFSC has provided Theresa with a positive meaningful and way to contribute to patient safety.
