This article is a very special
one for me, one that I have been trying to get published and seen by the
medical community since it was written two years ago, after a difficult
ICU case. However, the story is fictional, a composite from several cases;
the emotions are not.
I am very thankful to The Western Journal of Medicine for deciding to publish this article. I am also please to announce that the URL for Journey of Hearts is being listed with this article.
A Special Caution: This Article may be difficult for some people, especially non-medical, to read. Please read the introduction paragraph and decide for yourself.
In Memory of Vickie and all the
ICU patients that I have take care of over the years.
A dedication to Dr. Phil Delio, my Intern with this case at the time that this was written, (now Chief Neurology Resident at Stanford University) who swore he would never read the article again. Let us hope that this brings about more compassion in physicians.
Author's Note: I read Dalton Trumbo's 1939 antiwar
novel, Johnny Got His Gun, as a teenager. The plot remained buried
in my memory until I started working with comatose, nonresponsive, postoperative,
or intensive care unit (ICU) patients as a medical student and later as
a resident. After one particularly difficult case, the memory of "Johnny"--blind,
deaf, dumb, a multiple amputee, sustained in a hospital bed, sturgglin
to communicate with the outside world--began returning to me. The parallels
with ICU patients--intubated, lined (with central lines, oxygen, feeling
tubes), paralyzed--became apparent to me.
The story raises disturging questions for which thre are no easy answers. How much do ICU patients feel? How do we, as physicians, feel about dealing with these patients? How do we deal with families who want everything, and "everything" may not be in the patient's best interest? How do we interact with these patients who are unable to interact with us?
As the fog starts to clear from my head, I struggle to regain my bearings and begin to explore my surroundings.
What was my last conscious thought before this moment? I can remember driving, bright lights coming toward me, swerving to miss the oncoming car, the gruesome sounds of glass breaking, of metal crunching, and of someone nearby screaming; then suddenly stopping. Voices shout, "We have one here! This one is alive!" Rough hands place something around my neck to keep me from moving, shift me to a board, and pull me out of the car. I remember excruciating pain enveloping my body and escalating in intensity until I can stand no more. Thankfully, the blackness of unconsciousness came.
I swim back against the darkness and confusion in my mind and try to open my eyes. I am unable to make the muscles move. I try to speak and realize that a tube blocks my throat. I do not breathe on my own: a machine forces me. I sense another tube in my nose. Efforts to move my arms and legs are useless. My body feels like dead weight. I am paralyzed and may be tied down. I can feel the air passing over my skin, sometimes cool, other times warm. Taking a mental inventory I discover something in my bladder so I cannot urinate on my own and something else sticking into the right side of my chest, causing me anguish with every mechanical breath. I cannot move my neck; something keeps me from turning. My legs ache constantly, from immobility, with shooting pains and sweat, as a device intermittently squeezes them. What sort of macabre torture chamber have I entered? Please, someone tell me I am dreaming!
I sense a person in the room, examining me. My eyes are opened, a light shines in, and I vaguely register hazy, blurry objects.
reactive. The patient is still heavily sedated. No apparent seizure activity."
I feel pressure on my outer chest. A stethoscope? My breaths are automatic, not under my own control.
The pressure is over my heart. Is anyone listening? Perhaps I can make my heart beat faster so someone knows I am alive and I can feel. No one notices. The pressure shifts to my abdomen.
"Bowel sounds are present. We can increase the tube feeds."
I feel hands examine my feet.
"Peripheral pulses, strong and intact. Pneumatics in place."
These hands are cold, rough, mechanical, detached. There are the other hands--warm, soft, compassionate, attentive. They turn me gently side to side to bathe me, reposition my arms and legs, soothe my tired muscles, and ease the pain in my back created by being still for so long. I look forward to these times, with new, freshly powdered sheets. I smell clean. My hand is held lovingly by these comforting, empathetic hands. I feel the compassion and warmth conveyed in this simple act of kindness. For just a brief moment I experience a sense of calm and tranquility. I am at peace in this daymare. I want to believe the voice that tells me I am doing fine, and that everything will be all right, but I have my doubts.
They talk about me at my bedside, oblivious to the fact that I can hear all they discuss:
"This is a 34-year-old victim of a motor vehicle accident who sustained multiple traumatic injuries, including a closed-head injury, a right hemothorax, and bilateral femur fractures. The patient required emergent intubation in the field to maintain an airway. Seizure activity was observed both in the field and on arrival to the emergency department. The patient was paralyzed and sedated to control the seizures. Vasopressors were used on admission to maintain hemodynamic stability and improve cerebral profusion; however, the patient is presumed to have suffered from anoxic brain injury. The EEG [electroencephalogram] shows some baseline activity, but there are no signs of response to painful stimuli."
They talk about me, discuss the treatments, debate the options, but do not touch me. Why? What is there to fear from the human touch? What are they afraid of catching--or of feeling?
How do I break through to them? I cannot move my face or body. I am unable to speak, yet I can feel. I notice every tube, every needle-stick and blood-draw, every rough hand and gentle caress. I want to scream out, "I do hear you! My brain is working! I am alive!" but remain paralyzed and mute.
Time passes. With each new procedure or repositioning, I am abruptly transported back to this daymare. I spend the hours drifting in and out of this altered state. In one daydream, I am running free, my arms and legs carrying me, effortlessly, by a bubbling stream and through sweet-smelling fields of flowers. The air is filled with the joyful songs of birds and colorful butterflies are playing on the breeze. I am breathing deeply, my heart rate slowing and relaxing in this peaceful, tranquil land. The sun shines down on me, sharing its warmth and light, until my only conscious thoughts are of peace, contentment, and joy.
In an instant, this world was shattered. Out of clear blue skies comes a bolt of lightening, striking me in the heart. Abruptly, I am transported back into the world of cold steel, sterility, and mechanical devices. People, with their faces distorted from concern and panic, are frantically working over me to bring me back and "save me." Why?
I pray for rest and for peace. I hope that every time I escape from this new consciousness to my happier memories, I will not return. Yet, each day I emerge from my dreams to endure the ventilator, the tubes, and the pain. The medications they give me do not suppress my suffering while I am awake. Because I cannot respond and do not flinch during painful procedures, they do give me anesthetics. I must endure the anguish of needle sticks for blood and tubes replaced in different body openings. I remain in tormented silence.
They start talking about pneumonia, worry about my "vital signs," and debate the treatment options. They mention a "drug-resistant strain" and possible "sepsis." I hear thick mucous being suctioned from my damaged lungs, as the machine is readjusted daily to help me breathe. I am unable to cough, or do anything to clear the mucous. I rely on someone else to suction me. I fear I am drowning in my own fluids.
The conversation in front of me begins to take on a more dismal, somber tone.
"This is a very sad case. She's been here for over two months now, and we haven't made any progress. It now looks like an ARDS [adult respiratory distress syndrome] picture with a drug-resistant pneumonia. We are concerned about the possibility of sepsis. We don't know if the antibiotics will be effective. She is young and was healthy before the accident. We are working with a strong heart, lungs, and good kidneys; no signs of multi-system organ failure, yet. We believe there was brain damage from the head injury, seizures, and presumed anoxic brain injury. The EEG showed some limited brain wave activity. The family still wants us to be aggressive. We may need to use the ethics committee to help sort out the options. For now we are continuing with the full-court press. She is a 'full code.'"
Why must they continue to torture me? How much longer do I endure? Don't they realize I am alive, that I can feel? What purpose does this continued anguish serve? I pray that I will find the ability to communicate so I can ask for my suffering to end. Please let me escape, let me depart to my dream state, my fields of warm sunshine. If this is all my life is to be, nothing more, why can't they just let me go?