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2/19/2020 8:00 AM

By Eileen Chang

A photo of the ChangsIt was midnight over twenty years ago; the nurse brought my crying newborn son, Daniel, to my hospital room so that I could breastfeed. As the nurse handed Daniel to me and left the room, he stopped crying. I whispered to him, "It's just you and me, kid."  Little did I realize that those words would echo the lonely journey we would experience through the healthcare system many years later.

Growing up, Daniel always challenged himself; he performed well in academics, and excelled in various individual and team sports. He was emotionally mature for his age and defended the 'underdog'. Unfortunately, when it came to navigating the healthcare system, he was treated with an "unconscious bias" from the start.

A couple of months after a high school camping trip, he experienced ongoing nausea and gastrointestinal symptoms for several weeks. He was told by his physician that "growth hormones" were affecting him. The prescribed antacids did not seem to help. After finally convincing the physician to order fecal testing, I received a letter from the City querying the origin of Daniel's drinking water. He had tested positive for a fresh water parasite, Giardia lamblia. Daniel told me years later that during the camping trip, he had unknowingly drank untreated water from a canister that was erroneously labeled.

After his first year of university, Daniel was preparing for a trip to South America for summer work in an orphanage. He received a series of travel vaccines, one of which included a live vaccine. His whole body seemed to 'short-circuit' and crash. Over the course of a few years, his varying and multiple symptoms worsened and he later suffered severe and debilitating pain. Unfortunately all the 'routine' diagnostic tests did not produce any positive findings for a diagnosis, nor a referral to a specialist.

Many healthcare providers tended to compartmentalize his symptoms to come up with a diagnosis. It was only after a false positive on an immunoglobulin test that he was finally referred to an immunologist. I happened to stumble upon a health journal article describing a disease listing the exact symptoms Daniel was experiencing. We had a year-long wait list to see other specialists. After much perseverance and through vigorous assessment, Daniel was diagnosed with Myalgic Encephalomyelitis (ME).

Even though we finally had a 'name' to this disease, the medical management of his disease was not done in a collective and consultative manner. Often Daniel felt 'mocked' even though he was able to clearly articulate his symptoms with the physicians and other healthcare providers, and identify key factors which would cause those symptoms to flare up. Daniel and I both knew we had to take complete ownership of his treatment plan, as we continued to encounter more gaps with his care.

We assembled and summarized all test results and medical notes to ensure that physician visits were meaningful, productive and efficient. Daniel requested a psychological referral as he had read up on ME and knew there was no known testing or cure. His first request was denied. He started taking matters into his own hands, by producing and posting four ME videos on social media, attending support groups where others had ME, and joining the ME Association. We sought alternative types of therapy/treatment. He tried to ease his physical pain by meditating, and through massage therapy, acupuncture, chiropractic treatment and yoga. Daniel started journaling and charting his symptoms, activities and medication. He scored his energy and pain levels every hour of every day. We wanted to have data to help the health professionals help him!

As a healthcare leader, I am all too familiar with the challenges and complexities healthcare providers face, coupled with existing gaps in systems and processes, and reduced resources. With over 25 years of combined clinical and progressive leadership experience in major academic, research and teaching hospitals, followed by over a decade of a focus on patient safety, I am not a stranger in navigating through the healthcare system. I know the importance of teamwork, critical thinking and respectful communication. I know that teamwork also includes the patients and their families or caregivers.

Hospitals are currently scrambling to become high reliability organizations (HROs). One of the key attributes of HROs is "deference to expertise". That expertise also rests with the patient. In healthcare, we all need to raise the bar – not just "give' patients and their families or caregivers a voice. We need to raise their voices so that they can truly work as a team with the healthcare practitioners to provide the best quality of care possible. There may not be evidence-based solutions for diseases that do not have a present-day cure; however, we must also consider the value of "experience-based". Critical thinking in the clinical setting needs to be coupled with collective mindfulness – with the patient and family/caregiver – so that we can all inform and engage with each other.

Much of the learnings in my role as a patient safety leader come from working with multidisciplinary teams, especially when facilitating quality of care reviews, where contributing factors that lead to negative outcomes in the patient's care are identified. The identification of gaps in systems and processes that lead to recommendations are paramount in ensuring that system improvements and learnings are spread to mitigate any further risk to other patients. The patient's or family/caregiver's input to those recommendations is also key in ensuring optimal quality of care and patient experience.

Eileen Chang is a member of Patients for Patient Safety Canada. She hopes to leverage the learnings from her son's experience and her work experience to truly improve team collaboration at all levels of healthcare.