A child’s father knew when to let go. The health care team didn’t.

Physicians are accustomed to seeing patients at the end of their lives.  It is difficult to let families know they may lose their loved one.  Clinicians are often accepting of patients DNR orders before family members are ready.  This story is about a time where the health care team was ill-prepared, yet a parent made the difficult decision to discontinue intervention.  It taught me an unforgettable lesson.

During the first ICU rotation in my second year of pediatric residency, we arrived at the bedside of an 8-year-old girl, who looked like any other kid her age.  Rose had long dark hair, green eyes, and freckles.  I have always loved children with freckles.  Maybe they remind me of her.  Rose was diagnosed by chest x-ray with an “anterior mediastinal mass” and was being temporarily transferred to a different hospital for radiation treatment.  She would return to our care in the afternoon.  When the other second-year resident got to the “plan” of his presentation, the cardiothoracic surgeon interrupted and said this was a “ticking time bomb.”  I did not understand what he meant until later that evening.

The surgeon continued, explaining if she had difficulty breathing we were to run a full code.  Manage her airway, intubate her if necessary, and if that was not working, cut open her chest to pull the mass up off her heart and lungs until he could arrive and perform surgery.  The plan seemed oddly pessimistic in light of the fact Rose was sitting up and breathing comfortably while we were standing outside her room having this conversation.  Our attending physicians seemed skittish; they kept repeating we should be ready for anything.

Curious about Rose’s illness, I spent some time after rounds reviewing her chart.  She had been coughing for six weeks and complained of shortness of breath when lying down.  Her primary care physician prescribed a few courses of steroid medication over that time period, and she would improve after each round.  A few days off of steroids, she would worsen, so her physician ordered a chest x-ray which revealed the tumor.

Rose returned from radiation treatment, and we followed her labs closely.  The ICU fellow kept saying it was odd there were no changes in electrolytes or evidence the radiation had its intended effect.  We checked on her before heading down to dinner.  She looked fine, was sitting up in bed and smiling.  Just as we sat down to eat; our emergency pagers went off.  We ran up three flights of stairs and arrived at her bedside in a minute or two.  I will never forget the expression on her face; it was fright, dread, and panic all rolled into one.  She took one heaving breath, laid back, and was gone.  She was not breathing and had no pulse.  It was in an instant.  I straddled her on the bed and began chest compressions.  The respiratory therapist was managing her airway with a bag to provide oxygen.  The fellow began to set up for intubation.

It happened so fast, I did not notice anyone else in the room.  A deep voice behind me roared, “Stop, stop doing that to my baby girl.”  Huh?  What was this man talking about?  We made a plan that very morning; there had been no objection.  She was a full code.  She was 8 years old.  She was awake and talking to me less than a half hour ago as I headed down to dinner.  He bellowed this time, “I don’t want you to keep doing CPR.  I hope you are hearing me?  I am talking to you.”  Astonished, I answered “Sir, I am hearing you, but I cannot stop.  I do not have that authority.  The attending is the only person who can make that decision with you.  He is on his way.  I am sorry, but I must keep going.”  He began to cry.

The respiratory therapist was as stunned as I was.   While providing chest compressions, I naively believed Rose was going to be fine; we were going to save her. The team was prepping the OR, and the surgeon was on his way.  Her father wanted to speak with the attending physician in the ICU before any additional intervention.  Within 7 minutes of her collapse, our attending arrived, spoke with her father, and authorized discontinuing CPR.  I stopped providing chest compressions; she was asystolic before I climbed off the bed.  The flat line never faltered.  She was dead.

Feeling sick to my stomach, I could not cry until reality set in a few hours later.  Then I was sobbing for days.  How did he let her go?  Does he not know we cut patients open and save lives?  The shock wore off slowly and then a week later, we reviewed the autopsy report.  It provided a remarkable lesson never to be forgotten.  The tumor had not just been sitting on her heart; it had attached itself and snaked its way into her heart and the large vessels returning blood to her heart.  If we had cut open her chest, it would have been traumatic, chaotic, and she would have perished regardless. Somehow, her father knew better than the health care team, what was best for his child.  I was not ready, yet he was prepared to let her go and made the right decision.

All identifying information has been changed to protect patient privacy.

Niran S. Al-Agba is a pediatrician who blogs at MommyDoc.

Image credit: Shutterstock.com

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