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 healthcare 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 cardio-thoracic 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 6 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 healthcare
team, what was best for his child. I was
not ready, yet he was prepared to let her go and made the right decision.
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