DukeMed Alumni News
Winter 2008

Naming the Silences:
The 2007 Andrew Puckett Humanism in Medicine Award-Winning Essay

by Christiane Lynn Haeffele, MD'07

When I used to imagine what a death with dignity might look like, I did not picture a baby.

Dignity, in my mind, embodied qualities that one earned through experience and a lifetime of stiff upper lips. Won with age, fortified by character, dignity was a mature affair afforded to some by lottery at the end of a long life. In one's final moments, a death with dignity was the ability to create a bit of sacred space around oneself that was respected by others before you breathed your last.

Then I met Jack.

If Santa Claus decided to get in touch with his inner Beat Child, converting his beard to a goatee, and began sporting Hawaiian shirts, he would look a lot like Jack. Santa Claus would also have to embrace a penchant for ribald jokes, Will Ferrell, and a playful tendency to push my unfortunate form into inanimate objects whenever he happened to pass by our team on morning rounds. But the fundamentals of his Santa likeness are there: the twinkling eyes, the red cheeks, the hearty laugh, and a deep love of children.

Jack is a pediatric intensive care unit nurse.

Along with a few other nurses, Jack helped care for one of the most difficult patients in the pediatric ICU during the month I interned there. Born with an inoperable, unstable airway and two lifeless arms, Baby M could only lie prone on his back. Strung above his bed was a complex assembly of gauze, tape, and tubes that carefully held his airway open in a delicate, specific position. He could not be moved without a team of nurses and respiratory therapists on hand, lest his airway collapse. As a result, unlike other babies in the ICU, he was almost never held or touched. Instead, held prisoner below his intricate, white-gauze web, the victim of a bad anatomical lot in life, he could only lie on his back and stare blankly at the dull gray ceiling of the ICU.

Baby M's mother, despite an extremely poor prognostic evaluation from the surgical team, insisted he be kept alive at all costs. As a result, the few times Baby M did receive human contact, it was usually of the violent, pressure-filled, CPR-type. He was nursed through recurrent respiratory infections, frequent airway collapse, cardiac arrhythmias, and pressure sores. Between the Code Blues, his mother often absent, Baby M lay silent and alone.

Until one morning on rounds.

Rounds in the PICU typically involved enough people to take over a small, unarmed country, including PICU attendings, fellows, residents, cardiologists, pediatric cardiothoracic surgeons, anesthesiology fellows, PICU nurses, nutritionists, pharmacists, pharmacy students, physician assistants, nurse practioners, social workers, and me. That morning, as the army trooped through Baby's M room, few in the invading force glanced over at him as his cause was long ago considered to be Lost. Instead, the army took up camp around his neighbor's bed, a new patient with a cardiac condition many hoped could be repaired.

As we passed by Baby M's bed, I noticed that the heart rate was slowing.

His nurse, growing increasingly alarmed, moved towards the code button to instigate yet another resuscitative effort as a respiratory therapist began hand-ventilating him. Before her hand touched the button, the PICU attending appeared beside her. ‘Not this time' he said quietly, ‘His mother has decided he has had enough.' She stood for a minute, holding his gaze, her hands still outstretched for something to do. Then, she nodded, and dropped her hands to her side.

Together, the four of us stood around Baby M, mesmerized by the sight of his heart tracing, growing slower… and slower…. …. and slower. When the vitals alarms began to sound, several nurses rushed in to help, grabbing for suction and various medications. However, they were quickly stopped, and together we all watched the heart tracing and the ever-quieter baby.

On the other side of the room, rounds continued, the army in tight formation. A curtain was pulled to shield the team from the vigil convening on the other side. Unable to move my feet to cross to the other side of the curtain and continue with rounds, I stayed with Baby M and his caretakers. His heart slowed further and his movements grew smaller. Some began to cry. No one said a word.

A roar suddenly sounded behind me, flinging my eyes open wide, and startling everyone in the room.

Santa Claus had arrived.

“Where is he?! Where's my boy?” Jack thundered, bursting into the room and breaking our silence. He swooped in over the child, oblivious to the wires, tubes, and gauze that the ICU teams had so carefully rigged above him day after day. Without pausing, Jack scooped the baby up, clasped Baby M's bluing form to his chest, and sat down in a rocking chair that had miraculously appeared. Stroking the child's face, his face carved into a gentle, sad smile, he held him close and began to rock.

“There he is", Jack said softly, "there's my boy.”

For the first time since his birth, the baby knew what it was to be held by another human being. Baby M died minutes later, wrapped in the warm arms of Jack, who never stopped looking at him and smiling down into his eyes.

Jack taught me that even the most helpless of us deserve dignity, and silences must often be broken to achieve it. Dignity, I have come to believe, is the respect afforded a person in recognition of his humanity. It is not a trophy handed out at the end of a long stay here on earth for a life well lived. Dignity is simply recognizing the humanness in another, and preserving or creating a space for it to exist.

Unlike the rest of us, frozen in place by a dying baby's heartbeat, Jack saw what we did not: Baby M's humanity had long been sacrificed to keep him alive. Denied all but the roughest of human interaction, treated more as a breathing apparatus than a child, Baby's M short life had not been a dignified one. However, with Jack's help, he was able to die with dignity.

The question at hand is whether the education of Duke's medical school, at the conclusion of the curriculum, imbues in its students an awareness of humanism. The American Heritage Dictionary of the English Language (Fourth Edition, 2000) defines humanism, as it relates to medicine, as: the concept that concern for human interests, values, and dignity is of the utmost importance to the care of the sick.

Within the healthcare setting, recognizing a person's humanity involves the recognition of a patient's values regarding the body and health. How people view their bodies and health results from a complex interplay of factors. At the core of the hierarchy is the need to relieve human suffering and the free will to choose how to do so. Infused over these two fundamental sources are religious and secular beliefs about nature and the body. Taken together, these beliefs, attitudes, convictions, and practices create a person's values about their body and pursuit of health.

However, the patient is not alone within the doctor-patient relationship. Nor is he or she the only one with a humanity in need of preservation. In order to understand how to recognize, and therefore preserve the patient's dignity, I believe a physician must have a deep understanding of his or her own values. The two sets of values brought into the doctor-patient interaction will define the essence of the relationship. To understand where you stand in relation to another person, you must first understand where it is you are standing to begin with.

William Osler once famously said: “To study the phenomenon of disease without books is to sail an uncharted sea, while to study books without patients is not to go sea at all.” Duke's curriculum remains excellent at building strong ships to carry its medical students out into the sea of clinical care. Supplied with refined materials for building, well-worn maps for guidance, and a firm Duke marine attitude, I feel fairly certain that my newly constructed vessel will prove seaworthy in the years ahead.

However, for all the materials, craftsmanship, and knowledge of the landscape, I have often felt cast out to sea, directionless, without a compass. Perhaps I arrived ill-equipped to deal with the pressures of medicine, but in the face of such overwhelming humanity, on the wards of the hospital I discovered a lack of deep understanding on what defines my own. I do not feel I am alone in feeling thus. A curious silence exists within medicine when it comes to understanding what shapes our collective values and direction as a profession.

During my time on the wards as a second year medical student, I first became aware of the silences within medicine- silences that are created by the breakdown in communication. Medicine is full of these broken connections. Silence fills the space between what patients expect and what medicine is able to deliver; what our technology allows us to cure versus what care the average patient actually receives; what our government provides and what they should provide. The disparate visions of medicine between doctors and patients, industry and social systems, technology and healthcare, renders us all as ships passing one another in the night. Humanities clash against one another, yet no one talks about the collision. The inability to name and describe these silences gives them power over us, and in the process we quietly sacrifice the humanity of many. And, not all of us will have a Jack to break the silence and show us the path back towards dignity.

The accelerated pace of medicine and science does not appear to be closing these gaps in communication. Rather, the discord between the institution of medicine and the patients it serves appears to be getting larger. As a third year medical student, fresh off the wards and full of questions, I spent time listening to people talk about their experiences with medicine. Overwhelmingly, people expressed frustration with the current system. Doctors do not listen, medicine does not deliver, and care is too expensive. On the other side of the divide, physicians' own sense of humanity and morality is often subverted by a patient's effort to overcome subjugation to mortality and fate.

If suffering is defined as what is experienced when expectations are not met, than the American medical system is currently in a world of hurt.

I believe that if we are to name the silences, which will in turn empower us to change them, we must re-open the lines of communication between the different forces that shape the culture of medicine. Social responsibility must be weighed against the allure of technological progress. The way in which doctors and patients interact and communicate must be changed. At Duke, lines of dialogue must be opened.

How the Medical School can implement this conversation into an already stretched and strained curriculum, I am not sure. Medicine began as a profession of apprenticeship, and historically has continued to echo its beginnings on the wards. However, as the demand to be efficient within restricted work hours has moved to the forefront of academic teaching centers, time for individual teaching has all but disappeared during the clinical rotations. The attendings, gifted with experience, do not have protected time to be mentors to students. Residents strain beneath mountains of paperwork and increasing patient loads.

Nor does the Medical School currently have space to add didactic lectures that might compensate for the disappearance of the apprentice-style of teaching. As a third year medical student, I sought out classes to attend that helped me better understand some of the forces that shape our humanity: classes on ethics, religion, philosophy, and history. However not all students will have access to the classes and mentors that I did. If we are to be ships in the troubled waters of American medicine, part of our medical training needs to address how to find where our own North lies. Only in understanding our own directional bend, and the underlying philosophical and historical precedents that create them, can we understand how we relate to our patients. Whether this learning happen through mentorship, didactics, or some other form, it needs to exist. We must be taught to speak, and to find a direction from which to guide ourselves. Ships sailing without compasses will be hard pressed to find their destination.

The silences in medicine will not remit with time, but instead will only grow in magnitude as technology accelerates what we are able to offer our patients. Despite all of the technical advances available, if we do not begin to explore the divide that exists between patient and physician, the silence of medicine will not remit. Whether we choose to acknowledge them or not, the growing influence of consumerism, globalization, health care disparities, and insufficient resources chart the future direction of medicine. It is up to the leaders of medicine as to whether we want to open a dialogue about where we hope to go as a profession and as a culture, or instead be ruled in silence by that which we choose to remain powerless to name.

Because in the end, wouldn't most of us like a little dignity?