I received an email from a woman I met many years ago when we were both much, much, younger. She wrote this and sent it to me, kind of a personal reflection on the International Day of Mourning and Memory. I felt that it was too powerful and too important a story for my eyes only. I asked her for her permission to put it up here on my blog and she has graciously allowed me to do so. I am very, very, touched by how people have taken this day so seriously and spent time thinking, remembering and reflecting.
I Will Never Forget
Susan Ludwig-Goharriz
It
was almost my first job after graduating from University as a nurse.
There had been an aggressive campaign to recruit new graduates to the State School. The School was like a small community – at one
time housing thousands of individuals with developmental disability in a
cluster of “cottages.” In the same community was a hospital – used to
care for the most medically fragile of those individuals as well as any
individual from the cottages who became ill. I would be a staff nurse
in this hospital.
The
school was supposed to be “progressive” in its care model. It was an
attempt to offer “institutional” care in the most “home like”
surroundings. The hospital was supposed to be a place where care
providers were experts in caring for the various specific needs of the
community members.
The
reality was starkly different from the model that was touted to the
country that was still embracing the Kennedy administration’s attempts
to give better care to the disabled. It was a country that was still
reeling in shock at the ending of that presidential life . . . but still
trusting in the capacity of institutions to make decisions about those
who were deemed unable to make their own decisions.
Our
new patient was admitted from one of the cottages with a serious ear
infection. Green drainage ran down his neck – so contagious that he had
two infected fingers where he had scratched at the itching drainage and
the hang-nails on his fingers became angry red and swollen. He was
among strangers in the hospital – and the staff genuinely tried to do
what they could to support him in his new environment.
The
doctors on the floor were not competent to practice in the community.
They had not passed their State Board exams and so their practice was restricted to institutions. My
strongest recollection of them was when they reported me to my head
nurse because I had refused to stand when they entered the nursing
station. Their arrogance was only surpassed by their ignorance.
The
plan of care for my new patient? Well, there was virtually no plan of
care. They prescribed topical antibiotics for the sores on his fingers –
and oral antibiotics for the ear infection. There were no lab tests
ordered to be sure that the antibiotics they ordered were appropriate to
the infection – just give the oral medications and don’t question our
judgment. The infection showed no sign of abating even after several
days on the prescribed regimen.
One
afternoon, I arrived for my shift. This young man was having
seizures. He wasn’t having just one seizure – but one followed by
another. The seizure activity was such that it was driving his
temperature up by the hour. Our head nurse (experienced and kindly but
not willing to challenge the medical system) was trying everything she
could to control his fever, but the seizures continued – one after the
other for the entire shift.
He
appeared to be beyond understanding what was happening to him. During
the few moments between seizures he seemed to be dazed. I knew he was
in pain – but no medication was allowed to relieve his pain. The
fingers continued to be angry red – his ear continued to discharge its
steady stream of infection. The doctors refused to discuss any
alternative treatment – there were no IV’s to replenish his fluids or
electrolytes. There was no attempt to sedate him in the hopes that his
seizures would diminish. At the time, it was suggested that
administering general anaesthesia would make the seizures pause for a
long enough time to bring his fever down. The physicians smugly
declined to offer any treatment that would have helped this young man.
The
next day I arrived for my shift and this patient’s bed was empty. He
had lived almost 36 hours with one seizure after another. Finally, his
fever was so high that his vital organs shut down. One of the doctors
visited the floor later that evening – and with a certain amount of
smugness advised me that they had immediately contacted the family of
this man and requested permission to have his body cremated. The family
had given permission and the doctors had hastened to follow the
family’s wishes thereby sidestepping an autopsy.
My
mind goes back to him often. I see him as the head nurse was
desperately trying to bring his temperature down – and how everything we
tried had failed. I was filled with the rage that comes from feeling
totally helpless in the face of a system that forgets. It forgets the
value of the individual and his quality of life.
WOW extremely powerful and very emotional.....so much so words cannot express. Thank You so much for sharing. xo
ReplyDeleteWe have traveled so far and yet nowhere near far enough!
ReplyDeleteWow,,, thank you for sharing that powerful story. I wanted to let you know that I join you in mourning for this poor individual and I sit in prayer for his soul and hope that he is in paradise for eternity where there are no horror stories.
ReplyDeleteThank you for sharing.
ReplyDeleteAnother horrible story... I'm so tired of them, and still I will thank you for sharing.
ReplyDelete