CPN | Watching for the Dedication

Watching for the Dedication

“How can you watch that show?” my husband wonders aloud as he sees another episode of “Grey’s Anatomy” on our DVR.  Medical dramas were never his cup of tea, and he is downright incredulous that I watch this one after spending years as the primary caregiver for our chronically ill teenaged son. 

I understand my husband’s question – after everything I’ve been through, it seems ludicrous that I still watch stories set in the all-too-familiar world of our most painful challenges. I know every turn of hospital hallways and where to find the good coffee and snacks.   I will wake from a dead sleep if I hear the distinctive chirping of a pulse oximeter alarm, and I can read the unspoken “Oh no!” on the doctor’s face before he has a chance to choose careful words.  Why the hell would I want to visit a make-believe version of that world when I know the reality so intimately?

That familiar hospital environment certainly isn’t comfortable – quite the opposite – it touches on very sensitive places and reminds me of my “every parent’s worst nightmare” moments.  In fact, a recent storyline hit VERY close to home when a teenaged boy showed up in the emergency room with shortness of breath and coughing up blood – symptoms I saw up close and frequently. 

So why didn’t I just change the channel to a science fiction adventure or cooking show? 

I wasn’t hoping to see traumas and medical mysteries resolved with a happy ending in a one-hour package. And I knew well that television glamorizes the look and function of a medical setting.  Still, I was (and remain) captivated by the intensity and commitment of the protagonists’ efforts.  It’s reassuring to see the dedicated team work tirelessly for the patient – to apply their scientific expertise or innovate a new approach, to connect with the patient as a person, to learn the family’s backstory.  As a viewer I can look behind the scenes and watch a character leave the room determined to recruit an expert, or dive into research, or just digest their own human, emotional response to a case.

Seeing that dedication, even in a fictional story, resonated with my sense of the real-life team we worked with.

There were many doctors, nurses, and therapists who cared deeply about my son and our family.  We started with a professional relationship built on competence; and for some, that’s where it stayed.  With the extraordinary ones, our trusting relationship grew as we collaborated under the pressure of crisis and high stakes. 

I could see clearly when they were marshaling their resources to work the problems of my son’s case.  Running the questions around and around in their heads, digging into data, researching literature, and consulting colleagues.  I remember one doctor telling us “I was thinking about him last night as I drove home…”, and my confidence in his thoughtful care surged.  Months later, a different doctor came to my son’s room late on Friday to encourage us to call him over the weekend if things changed.  His unspoken message: my son’s status was precarious, and he wanted to be present if things got worse.  These doctors came from two different world-class teaching hospitals where my son was treated, so we knew we had the best minds working on his case.  It was deeply comforting to realize that their heart was in it as well.

I also liked knowing the team as more than the specialists directing my son’s care. We chatted about their wedding plans; I knew which superhero their preschooler preferred, and the colleges where their teenager applied. (Kind of like the scenes where you glimpse the tv characters’ personal lives outside the hospital.)  They got to know me personally too, considering my well-being and respecting my judgment in their planning.  And, as they connected with my son, they learned about his hopes, his strengths and fears, even his sarcastic sense of humor.  Knowing him so authentically gave them insight into the broad implications of his illness, and it fueled their desire to go the extra mile for his benefit. 

I know medical professionals are trained to maintain a certain professional distance in their work, and that makes sense.  They can’t function at their best if their own emotions are tangled up in a case, and they won’t last long in the field if they are repeatedly buffeted and distracted by the powerful emotions of patients and families. 

Somehow, they need to assess the scientific considerations of the case, and still be able to see the real people in front of them.  And while an emotional connection is compelling and gratifying for all involved, both sides of the relationship need to preserve some dispassionate judgment.  Medical professionals need to be able to tell a hard truth, while patients and families need to be able to question and even disagree with the professionals about potential concerns. 

It seems like an impossible balance — care about each other, but beware of the invisible line where too much emotion impacts your judgment…

Ultimately, our faith in the team made it easier to navigate even the bad outcomes.  We were certain that they had tried their best and exhausted every conceivable expert and option.  The fact that treatments were failing reflected the insidiousness of the illness, not their skill or dedication.  We believed in their professional ethic, and we valued their very human connection. 

After my son died, I heard from many of our team about how they would remember him. His unique spirit, our family dynamic, what they learned about his unusual illness.  Our time together touched them as people, made them stronger as professionals, and I know they will use that to help other patients and families.

I volunteer now at the hospital where my son was treated, so I regularly run into familiar faces as I walk through the building. One doctor (who worked with us only a few times) spotted me in the hallway, and asked “You’re Robby’s mom aren’t you?”  I was astonished she recognized me three years later in a different context, without my memorable son by my side.  It was more than flattering that she remembered me.  It was a reminder that even after those professionals walk out of the room and move on to another patient, we are still in their heads. 

There is a special kind of intimacy between medical professionals and patients and families, built on trust and understanding.  During my son’s treatment, it gave me confidence that we weren’t just another stop in a long busy day of patients.  Now, it gives me hope that they carry us with them, that it informs their expertise and compassion in future work throughout their career. 

In a recent episode of “Grey’s Anatomy”, former patients of one character show up to testify on her behalf in a dramatic courtroom scene.  The doctor is touched to see these people again, and she clearly remembers them well – their names, their condition, their personal details.  It seemed melodramatic as it played out in the story, but it also touched a truth of my experience. 

 

Caryn Anthony is a nonprofit consultant and executive coach from Silver Spring, MD, and is also a volunteer member of the Patient and Family Advisory Council for Children’s National Medical System.  She is the author of “Any Way the Wind Blows,”—a blog geared for families raising a child with a significant medical condition.  Her writing has also appeared in The Huffington Post, Grown and Flown, and Modern Loss.

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