Barb Farlow is living proof that a single, dedicated person can make a difference, as she champions positive change in a health care system that failed her family.
When the day came that Barb Farlow decided she had to make a stand for patient rights in Canada, she initially balked at the challenge ahead of her.
What could a single individual hope to do, she wondered, in the face of all that impenetrable hospital bureaucracy and unimpeachable medical expertise?
But Farlow pressed ahead anyway, digging for information, demanding answers, and in October 2006, she proudly participated in the founding Vancouver conference of Patients for Patient Safety Canada. Ten years have passed since she came out of that conference as one of Canada's original patient safety champions, but Farlow remains just as committed today to advocacy work for patients and their families.
Like so many others, her bond with patient safety was forged by a shattering experience at the hospital. In August 2005, Barb and her husband Tim were struggling to understand the circumstances surrounding the death of their infant daughter, Annie. Annie, was born with a genetic abnormality with a range of outcomesgenerally associated with medical complexity and significant disability, and , had died within 24 hours of being rushed to the children's hospital.
"The doctors were not open with us about their perspective and plan of care," Farlow says, thinking back to that confusing, agonizing experience.
"We were very clear about what we hoped for. We certainly didn't want to go to any point where our daughter would incur suffering without any benefits. We had a great relationship, or so we thought, with the doctors. We realized that at some point we would likely opt for palliative care but we would then be at peace to know that we had considered medical care and determined with the doctors that it wasn't in Annie's best interest. So I think we were quite balanced and rational.
"Reflecting on the experience, we believe that Annie's doctors didn't appreciate that some children survive and live a happy, though disabled, life and automatically limited care options. Tragically, Annie died at the age of 80 days shortly after arrival for respiratory distress. We came to discover that a do-not-resuscitate order had been placed in her chart without our knowledge or consent. We're not really sure why Annie suddenly declined because some of her final records are missing."
The coroner who reviewed the case, said the final care provided had been inappropriate, and the hospital apologized for poor communication. But the entire experience left the Mississauga couple still looking for answers.
"I couldn't figure out what we'd done wrong and I realized the doctors just didn't see things from our perspective at all," Farlow recalls.
"It wasn't just one misunderstanding by a single doctor, it was a system that didn't understand our perspective. I just felt it was wrong and couldn't walk away from it."
The aim of Patients for Patient Safety is to establish a global network of patients and family members affected by health care errors to collaborate with health care organizations to improve the quality of patient care. Farlow acquired her champion credentials, but again, as just one person, the prospects of affecting change seemed daunting. She feared that her perspective and desire to improve communication might be dismissed as merely the ramblings of a bereaved mother.. What Farlow soon found, though, was that her affiliation with the Canadian Patient Safety Institute made all the difference in the world.
"What I found, was that being associated with the Institute gave me confidence to believe I could make a difference. Also, because there is an application process and required patient safety education involved in becoming a member of Patients for Patient Safety Canada, I believe I was viewed as a more credible person by the health care community and one with whom they could partner.
She started reaching out, networking, seeking some way to share her experiences so that other patients and their families might avoid the same ordeal. Eventually she was invited by the Canadian Paediatric Society to write a narrative about her family's experience and that paper was published in the society's journal. That big step enabled her to make another and another and soon she was attending patient safety conferences and speaking at ethics symposiums and contributing more to the medical literature on the issue of vulnerable babies being judged and dismissed within the health system.
"One of the things it's caused me to realize is that when you take a rational, calm approach, people will listen to you and partner with you to make effective improvements." Farlow adds, "indeed, even a single person who is determined to make a difference can, with the right attitude, make that difference.
"I've really been amazed at how many good people there are in the system. , I've come to forgive and appreciate the physicians involved in my daughter's care, and realize that they were well-meaning, but misguided. They didn't act in a malicious way. They thought they were doing the right thing but their actions were based on many assumptions that were not evidence-based. The research I partnered to undertake and publish has complemented the literature with this necessary evidence."
Farlow has welcomed a gradual patient-centred shift in the health care culture in recent years, a change in attitudes that now sees patients regularly sitting on health committees and an expansion of hospital family advisory councils. She's also greatly encouraged by efforts from organizations like the Canadian Institute of Health Research in developing new patient-centred research.
"This direction is all based on the realization that providers can't know everything and do everything to deliver optimal health care to people. They have to consider the end user and deliver care with patients."
That remains her fundamental message to health care providers everywhere: "Listen to the patient, learn from the patient, include the patient."
Looking back at her time with Patients for Patient Safety Canada, Farlow says she has come to appreciate that there's an undeniable power derived from having experienced an adverse medical event. "Our group provides a patient's voice to many areas that often doesn't relate at all to our personal experience. But when you have a personal experience there's this added energy. When something happens that shouldn't have happened, you have enough energy to move a mountain. The ability to productively channel that energy and be an incredible catalyst for change."