34justice’s first guest author is David Fischer, a student at Harvard Medical School and a Howard Hughes Medical Institute medical research fellow. In this piece, David discusses how physicians navigate “the gray zone between life and death” when they interact with patients on life support. David studies the effects of noninvasive brain stimulation on movement and cognition and has authored several articles pertaining to neuroscience research, philosophy, and medicine. He has a B.S. from Haverford College, where he studied psychology and philosophy.
The attending physician sat at the foot of the patient’s bed, while I stood watching. He was smiling, but the look in his eyes conveyed far more kindness than his mouth or words could. He reached for the patient’s hand, which was contorted into a strained position, and took it in his. “You’re a lovely gentleman,” the doctor said, his voice quiet but firm. “It’s my pleasure to meet you.” The patient turned his eyes to meet the doctor’s gaze, his neck twisted and cocked at a sharp angle. The patient said nothing, and could say nothing, but kept his eyes fixed on the doctor’s. Several moments passed in silence, punctuated only by the mechanical sighs of the patient’s ventilator and the rhythmic beeping of nearby monitors. The doctor gave the patient’s hand a final squeeze, smiled, and led me from the room.
There was something remarkable about this encounter. It was, in some sense, a mundane scenario: a physician evaluating a patient with spastic paralysis, altered level of consciousness and dependence upon a ventilator. So what made the doctor’s attitude towards the patient so striking?
Treating patients with diminished consciousness and dependence upon life-sustaining technology poses unique challenges to the cultivation of humanity in patient care. In many areas of medicine, the distinction between life and death is roughly dichotomous. When alive, patients can often interact, remember past experiences, and demonstrate their personality. Following a fatal event, the transition between life and death, from a person to a body, often occurs quickly, save for relatively brief alterations in mentation. However, the technology that has permitted modern life-sustaining treatment, such as mechanical ventilation, has complicated this distinction. Following a severe neurologic insult, patients such as the one we encountered can remain in this transition for prolonged periods of time. Patients with disorders of consciousness or severe dementia may appear to lack the memories and personality that made them who they were in life. Yet, by mechanically preserving basic physiologic functions, we can ward off death. In this way, these technologies, though undoubtedly important, can suspend patients in a gray zone between life and death.
For physicians who care for patients in this gray zone, the encounters can be uncomfortable. The ability to interact with people, a skillset developed through years of human experience, is difficult to apply in these circumstances. The moments alone with such patients can be haunting, as one greets the patient by name and then awaits a response. As the silence lengthens, the patient may seem neither alive nor dead, like a ghost of his or her formal self. When the expectant silence is broken only by the mechanical sounds of equipment, technology can feel like the only presence.
Doctors who regularly encounter experiences such as these may come to treat these patients like bodies, like sets of physiologic processes as inanimate as the technology the patients rely upon. This is not to say that such patients are not treated with respect, but that the respect is similar to that paid to a body in a funeral home. This is an approach that protects the doctor’s psyche in several ways. For one, the doctor must often purposefully inflict pain on patients in order to gauge the extent of neurologic impairment. To summon the strength to deliberately injure a fellow, vulnerable person requires a forceful violation of empathy in what can be an emotionally harrowing task. To do so to a human body – to transform the ‘experience of pain’ into a ‘noxious stimulus’ – is much more manageable. Moreover, the prognosis in disorders of consciousness can often be poor, and the range of therapeutic options is often limited, rendering the physician largely powerless. With patients viewed as bodies, however, the physician is afforded emotional distance from these tragedies, and the instances of clinical improvement are all the more gratifying. Ultimately, for many physicians, eliminating humanism from these interactions is emotionally protective in the care of these patients.
This context is what made the encounter between the doctor and his patient so powerful. It was not merely that the doctor sat at the patient’s side, was polite, or maintained eye contact. We have all learned to do these things. What was striking was the attitude that appeared to underlie these behaviors: despite the patient’s altered level of consciousness and dependence upon life-sustaining technology, the doctor treated the patient like a full person. The doctor, with no expectation of reciprocation or gratitude, was willing to take the time to speak to and hold hands with a person who may not have understood these gestures. The doctor’s time, however, was the least of his sacrifices; by approaching the patient as a person, he rendered himself vulnerable to the emotional hazards of care, from the discomfort of inflicting pain to the powerlessness associated with management.
In addition to emotional fortitude, the doctor’s willingness to treat the patient as a person reflected a poignant wisdom. Much of the discomfort associated with treating patients in this state stems from confronting the gray zone between life and death. Our binary concepts of life and death provide us comfort, distancing us from the thought of mortality. However, life-sustaining technologies challenge this dichotomy, and threaten the view that the line between ourselves and death is a sharp one. In such cases, it can be easier to circumvent these existential discomforts by treating these patients as bodies, dedicating more attention to the monitors and ventilation settings than to the person before us. This doctor, however, was able and willing to appreciate the spectrum between life and death, and in doing so could comfortably recognize, within that spectrum, an ill person in need of compassion. He could recognize someone who was more than the mechanics upon which he relied. This wisdom ultimately empowered him to accept the emotional sacrifices of care and, as was clear to me in that room, allowed him to see a person when few else dared to see more than machines.