Trauma in the Waiting Room

by Shelley Robinson

Trauma in the Waiting Room

Before I explain my tenuous relationship with the Canadian medical system, it is important to mention that I grew up operating on the premise that I learned early in life, both personally and professionally.  “Good things come to those was who wait.”  There seemed to be some honour in this notion that “patience was a virtue” and I was taught that if I operated with integrity, people would respond in kind usually sooner than later.  For the most part, in the 1980’s, good things did come to me as a hard-working and relatively patient school teacher.  I was mentored by veteran educators who were consummate communicators in what I would describe as an environment of professional certainty.  We were trained to follow up with our colleagues, students and teachers in timely and respectful ways, even when it meant staying up late or working on the weekends to do so.  I continued my education through to completing a doctorate in order to be confident enough to form credible research-based questions about educational leadership and systems theories. 

It was through these professional and academic lenses that I continued to address the ongoing confusion that I had experienced since childhood through to my current medical challenges in the medical system.  Having been diagnosed later in life with Adult Cystic Fibrosis (affecting my breathing, body inflammation, digestion and mobility), I learned that the Canadian health care system never operated for me like a well-run institution.  Instead, it seemed challenged to help people like myself in complicated circumstances, in the communities who needed it most, with people who could least advocate for themselves.  My frustrating experiences in many labs, clinics, and hospitals may not be generalizable of all Canadian medical demographics; however, given the current medical staffing shortages making the front pages of many newspapers, I surmise that my narrative is similar to the stories of other Canadians.

Sometimes, like frogs in the boiling pot, we do not see the deficits in the health care system right in front of us until we are too far along to manage them.  We have become used to being triaged and then streamed into line-ups that we are taught to accept as “normal” because there are few alternatives to doing so.  For example, I have been told many times how fortunate I am to live in a country with a free health care system that I see now as one large waiting room.  Unfortunately, our system does not adequately address the pain and suffering that this waiting causes people who are lining up for potentially life-changing tests, appointments, treatments, surgeries, and follow-up.  I have travelled to many countries and have experienced first-hand the efficiently run international clinics and hospitals (too many to list, but Finland stands out).  By comparison, I always come back to this notion that our Canadian health care system claims to be a successful one on the backs of those people who are willing to wait within it.  

Some of the bottle-necking of our medical testing and services is due to the influence of our public and private insurance companies dictating what they cover, and in turn, what we can access and afford.  Unlike what the world that sees us as an example of as a free health care system, we actually pay for it.  Regardless of how it is being funded, one or both of the following situations is preventing this medical system from serving us optimally:  1) We do not pay enough to keep these federally and provincially funded, and provincially managed systems, strong, viable and competitive; or 2) they are not being run well enough to triage and treat people efficiently and effectively with the existing funding. 

How do I make such brash conjectures about the system that has saved my life on a couple of occasions, largely because I made sure that they didn’t leave me behind?  I have been an advocate for myself and my aging parents for much of my life.  I have blown a few whistles, and stood up on some soap boxes.  However, now I am actually quite triggered as I sit down to write about it in some detail.  It is painful to recollect the dozens and dozens of times that I have been dismissed, overlooked, and under-prioritized when I have been worried, in pain, and, in some cases, debilitated by my medical matters.  I have been told countless times to wait several months to more than a year for tests and imaging (that I begged for); appointments with specialists (that I lobbied to see); and surgeries (that were difficult to get).  I was told that if my symptoms became unmanageable in the meantime, that I was to go to an emergency walk-in clinic or hospital where I was told yet again that I had to wait to see a specialist.  

Some tests and surgeries did eventually come through for me and I remember hearing some surprised reactions by my doctors: “Oh my, you do have a rotator cuff injury and a split bicep” (based on a long awaited MRI); or “Oh, your lungs have filled up and you have pulmonary effusions” (due to a CT scan of my lungs that my husband argued to get in an emergency ward).  “It is a good thing that we took out your tonsils as they were filled with puss” (after debating with doctors to remove them for five years because they did not believe in tonsillectomies).  Some doctors were offended when I asked too many questions, or made any kind of recommendations on my own behalf.  As well, when some of my ideas did turn out to be correct, there were never any admissions on their part that they should have spent more time listening to and following up with me.  Most poignantly, I remember debating a doctor while being in an intensive care unit that I wanted a sputum culture of my phlegm.  He said “those tests do not show enough to warrant it.”  However, because of a vague recollection of my childhood where my sputum had produced some unusual results, I insisted.  He agreed, and the results highlighted some colonized bacteria in my lungs which finally led me to the Vancouver Adult Cystic Fibrosis Clinic.  

It was this such series of waits amidst numerous hospital visits throughout my lifetime that left me without a formal diagnosis about my Adult Cystic Fibrosis until I was fifty years of age.  Granted, the CF world has been evolving, but no one at any point in my young childhood, even when I was sitting in oxygen tents in different hospital rooms after being intubated to breathe, thought to do a sweat chloride test on me.  My skin had always tasted salty to me, but no one ever bothered to ask me or my parents this pretty obvious question even when CF was a pretty identifiable phenomenon at that point in time in the 60’s and 70’s.  Instead,  I attended hundreds of ten-minute appointments (because the system only affords short appointments) with both doctors and specialists who never quite connected the dots.  The medical mantra was always resoundingly the same:  “I can only discuss one medical issue per appointment.” They frugally doled out requisitions, referrals and prescriptions and held me in many wait-and-seeholding patterns. 

I now feel tremendous disappointment and some degree of trauma writing about my medical history in retrospect.  However, nothing prepared me for how acutely broken that I would find the medical world of my elderly parents.  My father recently had a stroke and was hospitalized.  His situation was a difficult one given multiple issues, and over his several weeks with a rotating series of nurses and doctors, I had to repeat myself so many times that I eventually wrote a family report of my own that I asked to be put at the front of his file so that it would be read by everyone overseeing his file. Despite my family’s efforts for his continuity of care, he kept getting medicine that he was allergic to, food that he could not eat, and they were not up-to-date on his care requirements.  I became the verbal Cole’s Notes version of his care for everyone who met with us, and even still, the degree of mistakes that occurred on a daily basis dramatically affected his recovery.  I do see it as a result of the burden on the health care system at a time when it is still recovering from the global pandemic.  However, I also see it as a lack of training and discipline of the medical staff to keep up with and develop strong communication systems that work for themselves and their patients.

I eventually filed a complaint with the hospital administration only to find that when he was sent to his next rehabilitation centre, his file had not been communicated in such a way that the new neurological unit could read and respond to it.  As a result, for a fourth time, he was given medication that made him ill.  I was told by the hospital administrator that “the new technological management system was still confusing to people on both ends from hospital to rehabilitation centre”.  I corrected him and said that it was the medical team’s training and due-diligence of communication that was in question, and not the technological tool that they had chosen to use in order to do so.  After this debacle of care in two hospital facilities, my father waited patiently to be put into a long term senior’s centre given his cognitive assessment, and, unbeknownst to any of us, he was put into a “dementia ward” in a bed that was far too short.  We were told that he was to wait until a room with the right fitting bed on the right long term care floor shows up even though he has spent his entire life of eighty-four years paying into this medical system.  In the meantime, we are still waiting.  I worry about his emotional well-being, and his medical needs being met without us advocating for him on a daily basis because I live out of province.  

I was told once by one of my educational mentors who used to be the principal of one of the schools where I taught that “Trust = Action/Time”.  In essence, I believe that we must say what we mean and do what we say regardless of our vocation because it builds trust within whatever system we operate.  What I was trained to understand in my own profession is what I have learned to see across professions.  When we wait too long to give feedback to our students, we lose the opportunity to teach them well because windows of learning close if we do not seize them when they are open.  The same thing applies in the medical profession.  When we make our patients wait too long to be diagnosed and treated, with adequate follow-up, we lose the opportunity to create a culture of wellness that extends across families and communities in such a way that our entire country benefits.  There is a danger in making people wait too long for the very things that makes them healthy because their primary medical issues quickly turn into secondary problems that keeps us awake at night writing an article about it to people who will read them.  The trauma of waiting in a system that often defers adequate medical care because the system is not functioning well, is the real Canadian medical crisis and it warrants our attention now, not later.