APA Newsletters

Spring 2001
Volume 00, Number 2

Newsletter on Philosophy and Medicine

Papers, Poems and Narratives

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Medical Charts and Teddy Bears1

Paul J. Ford, PhD
Vanderbilt University Medical Center

Preface

The following encounter deals with one type of experience important to clinical ethics. It highlights the tension between medical technologies and the human care provided for people. A further tension is inherent in an academic attempting to help in this highly technological, but human, environment. I leave these refleetions regarding my first involvement in the Neo-natal Intensive Care Unit (NICU) relatively unanalyzed in hopes that the story will be enjoyed for itself and will raise important questions about the place ethicists have in clinical settings.

Reflections

"The Teddy Bear"

I couldn't get the image of the teddy bear out of my head.
Parent's gently placing a light blue mohair bear in the rigid arms of their baby.
Locked-in syndrome? Locked-"out" "syndrome?
Baby locked in, parents locked out.
This image of parents, infant and blue bear stayed with me for days...
Such futility, such hope, such uncertainty, such normalcy, such caring, such torment.
The scene originally played out for me as I reviewed the medical charts;
Charts saying nothing about teddy bears, parent's dreams, or family dynamics.
I observe and am drawn into other individuals' lives.
A voyeur with only a keyhole through which to understand a family's suffering.
To what good end could this voyeurism lead?

I found myself among hospital staff members during the teaching rounds in the NICU. As an advanced graduate student in philosophy, I quickly noticed the strangeness of the environment. On at least two occasions one-to-one meetings progressed in interesting ways that provided the context for my above reflection. The first involved a third year resident who told me several stories about his interactions with families in the NICU. His comments provided a valuable ftamework in which to reflect on the sorrow of parents and their attempts to come to terms with the loss of a dream for a healthy, "normal" baby. In a separate meeting, a clinical fellow asked, "Not having a medical background, do you understand much of what is going on in rounds? It seems to me that it would be more helpfiil to have some type of medical background when doing ethics in the unit." I paused a moment, caught off guard, since I had planned on being the one asking the questions. After some reflection I replied, "Well... I don't catch everything but I am learning. I usually get the gist of things." She had hit at the heart of a very important matter. The fellow was asking what place I had in the NICU and what help I could be without extensive knowledge of the complex technologies employed in contemporary healthcare. Her question raised further complex ethical issues about my being in the unit to simply further my career, to fulfill a selfish learning project, or more disturbingly, to fulfill some morbid fascination. A few days after these two conversations, another infant arrived in the NICU and these thoughts intensified. The issue of parents losing their dream became more vivid.

* * *

"Paul, you should pay special attention to baby Larry during rounds today," suggested my clinical ethics mentor. He stood at the center kiosk in the NICU as I arrived. I wondered if this was one of his periodic visits to see how my "rounding" experience was proceeding or if he had been called in by a medical staff member for a consultation.

He continued, "An infant arrived yesterday who appears to be paralyzed from the tongue down. They think it might be a stroke, but are unsure. This could be a case of locked-in-syndrome."

BANG!!! My mind clamped down on that phrase. I had read a book by Jean-Dominique Bauby. Bauby had dictated his book, letter-by-letter, by blinking his only functioning eye-lid at an appropriate time as a secretary pointed to a letter board.2 Bauby's condition was caused by a stroke and called "locked-in--syndrome." His stroke occurred when he was the middle-aged European editor of EIIe magazine. In contrast, Baby Larry was a new born infant whose "event" had occurred in-utero. If Baby Larry's condition turned out to be locked-in-syndrome how could his mental condition and his future potential be evaluated? The physicians were faced with incredible ambiguity both in terms of the diagnosis and prognosis.

* * *

Baby Larry lays there absolutely still. His lack of movement does not seem so odd given that many babies in the NICU are sedated with pheno-barbituates. A baby on extracorporeal membrane oxygenation is limp and does not seem to move. However, there is a difference with Baby Larry. He is not sedated and he moves even less than the sedated infants. Further, the constrictures in Baby Larry arms necessitate rolls of cotton to keep Baby Larry's hands from clamping shut. He holds the cotton rolls like a cherub holding scrolls.

* * *

As my mentor and I stroll to the NICU from the ethics center a week later, we chat about my experiences in the NICU, in particular Baby Larry. Little change has appeared in his condition, diagnosis or prognosis, even though most medical diagnostic modalities have been exhausted. As we enter the #2 room in the "high" end of the intensive care unit, I notice Baby Larry's parents at bedside: a clean cut, professional looking, thirty something, white, middle class couple. We stand at the nurse's worktable in the middle of the room, as not to bother the parents. I peruse the baby's medical chart, in which there is little evidence that is either encouraging or conclusive. As I look up from the chart I notice the parents have replaced the cotton rolls with a Teddy bear. My insides are torn and I wonder if I should be watching the scene, or even if I should be in the unit. Maybe the fellow pointed to this very issue regarding the possible place and usefullness/uselessness of a non-medical person in the unit. I feel an incredible impotence. Not only do the technologies of philosophical ethics fail to recognize the full texture of the situation, but also the medical technologies, as demonstrated by the chart, fail to give a rich understanding of the complex dynamics of lives. Thus was born the fragment with which I began....

"The Teddy bear"

I couldn't get the image of the teddy bear out of my head.
Parent's gently placing a light blue mohair bear in the rigid arms of their baby.
Locked-in syndrome? Locked-"out" syndrome?
Baby locked in, parents locked out.
This image of parents, infant and blue bear stayed with me for days...
Such futility, such hope, such uncertainty, such normalcy, such caring, such torment.
The scene originally played out for me as I reviewed the medical charts;
Charts saying nothing about teddy bears, parent's dreams, or family dynamics.
I observe and am drawn into other individuals' lives.
A voyeur with only a keyhole through which to understand a family's suffering.
To what good end could this voyeurism lead?

Endnotes

1. I wish to thank the Center for Clinical and Research Ethics at Vanderbilt University Medical Center for Providing the opportunity for me to explore ethical issues in the context of a hospital setting. In particular Richard Zaner and Mark Bliton were helpful in their guidance during these experiences.

2. Bauby, Jean-Dominique, The Diving Bell and The Butterfly. Tans. Jeremy Leggatt (New York: Alfred A. Knopf), 1997.

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APA Newsletters

Spring 2001 Volume 00, Number 2

Spring 2001
Volume 00, Number 2