STELLA

As a veteran third-year medical student, I have encountered many touching cases in the past year, yet the urgency associated with modern medicine has not allowed me much time for reflection on such instances.  I have been told to avoid getting involved “on an emotional level” because “it might cloud my judgment” or “distract me from caring for others.”  Both are valid arguments, but I encountered a situation this week that jarred the foundation of some of my views of medicine.

I was sent to examine and obtain a history of Mr. J, a 77-year-old man with an inoperable brain mass.  On chart review I saw that he had been diagnosed with CNS B Cell Lymphoma—a particularly nasty malignant tumor—that had spread to his brainstem.  When I went with a younger third-year student to examine the patient, a nurse was in the room tending to him.  He was visibly struggling with secretions leaking from the breathing tube in his neck, and my first, visceral reaction was “is he drowning?”  After a minute or two, the nurse suctioned his tube and left the room.  The patient had calmed down, but I soon recognized the reality of his situation.  He had a nightmarish condition known as “Locked-In Syndrome,” in which one has intact cognition but total paralysis except for extra-ocular movements.  This is one of those conditions you learn about in the first two years of medical school that you never want to see, as the thought of being locked in your own body is a truly frightening one.  We assessed him briefly, and he appeared stable before we left to do a more extensive chart review of his condition.

Reading part of his medical history revealed that he had slowly developed this condition over the past 4-5 years without a diagnosis until a year ago, when he was already severely debilitated.  His current prognosis is exceedingly poor as he is in a “step-down” unit (one stage below an intensive care setting) and has been diagnosed with severe sepsis.  On further reading we discovered that his wife and family had been in contact with their primary care physician to try to transfer him closer to home so that friends and family could say their proper goodbyes. This would require a very rare use of “back transfer” to a smaller hospital essentially for hospice care.  Surprisingly, a local hospital initially agreed to accept the transfer once a bed opened up; however, that afternoon hospital administrators called to inquire about the status of the patient and the acute needs for level of care.  In other words, the palliative care team was asking, “Will we get reimbursed for the care of the patient?”  The answer was, unsurprisingly, likely not.  That essentially put the entire transfer on hold.  I had experienced such inadequacies in the bureaucracy of medicine before, but further reading revealed inadequacies that enraged me even more.

The patient was a Vietnam War veteran in the early 1970s, and his chart clearly stated that he was exposed to the nefarious “Agent Orange” in the field.  Agent Orange was a combination of herbicides and pesticides used to deprive Vietnamese guerillas of cover. The short and long term health effects of Agent Orange are well documented, with severe birth defects and multiple malignant tumors developing in those exposed.  This patient believed his lymphoma might have been caused by exposure to the chemicals many years ago.  According to the chart, when he went to the Department of Veterans Affairs (VA) for a workup, he was turned away briskly without an interview or physical exam. The patient had no choice but to come to the UVa Health System for advanced care since the VA would not hear his concerns. I wondered: is this really how society treats the veterans who fought for our county?

Mr. J’s tale both enrages and saddens me.  I grew up in Virginia Beach, an area with a proud military tradition.  In addition, I have strong personal beliefs regarding the power of patient desires, particularly at the end of life.  While I cannot comment on the truthfulness of what I read in the patient’s chart (I was unable to speak with his wife and family because they were back at home, pleading with the local hospital administrators to allow the transfer), I am struck by the failure of so many to help him.  He is a veteran, and the VA appears not to have done its due diligence in addressing his worsening condition.  While I understand the issue of finances, particularly in this economic climate, I am nonetheless appalled at the actions of the hospital-particularly rejecting his admission after initially allowing it.  This is an individual who is dying, and his family wishes for him to be returned near to home for a proper goodbye.  He should not be forced to spend his final days in a facility where no one (his family, physicians, or UVa staff) wants him to be. That feels fundamentally wrong on almost every level.

I do not know how this situation concluded, but I maintain hope that an arrangement was made for some sort of transfer.  This is the first instance in a very long time that I have had a truly visceral, emotional response.  I am a strong believer in the phrase “you do not need a reason to help people.”  I am comforted, however, by the many people involved (both family and staff) who genuinely care about the patient’s well-being and are working to make his wishes a reality.

— Cliff Cutchins, 2012

Locked In: Part I and Locked In: Part II are reflections by two third-year medical students at the University of Virginia on the case of a Vietnam War veteran with “locked-in syndrome,” whom they met during their rounds. One student expresses his dismay at this gentleman’s condition and treatment as if revealing a page from his diary while the other imagines himself in the mind of the patient releasing words trapped within and transforming them into lines of verse. Both look to creative writing to confront the gravity of the situation in which their medical studies placed them, to vocalize their distress rather than lock it inside as their patient was forced by illness to do.
— LC