Even “Frequent Flyers” Die

Article Outline

• Copyright

[Ann Emerg Med. 2009;54:840.]

It was a normal morning as I walked to the ED past the medical ICU. I ran into one of the ICU nurses just as she was finishing an exhausting night shift with an unstable patient destined to die in a few hours. The turn in my day happened when she mentioned the patient by name.

Savannah was one of our most “frequent flyers,” a 20-something woman with sickle cell disease, flagged and referred to our “complex patient” management team. She was one of those patients who came into the ED at least every 2 weeks, defying attempts to control her pain and predictably requiring admission after lengthy ED stays. She embodied one of our present-day conundrums: do we try to avoid an admission by continuing to try to control her pain in our busy ED, or do we just resign ourselves early to our almost inevitable failure? Early admission is a choice that concedes our inability to control her disease (or Savannah herself?), but it also keeps her from contaminating those important “treat and release” length of stay statistics.

With each ED visit, the distress of the staff was palpable. Often it exploded into anger—memos to the ED case manager, to her primary specialist. This isn't right. This is abuse of the ED. Can't we do something? Who is addressing the “psych” component of this patient's behavior? How “real” is this pain—in a patient who eats, wanders around the ED, receives visitors, but still has “10 out of 10” pain, and asks for staggering doses of narcotics? The inpatient teams struggled similarly because each of her admissions extended for days, sometimes weeks.

Yes, our rational brains have learned that sickle cell disease can be devastating. (In the ED, we don't see the patients whose disease is manageable.) Yes, we know that these patients can die suddenly from thrombotic events, from multiorgan system failure. And we may even have been taught that chronic pain patients don't have all the reassuring clues and signs—tachycardia, diaphoresis, restlessness, inability to continue with life's daily tasks—that allow us to “get” that the patient is having real pain. Still, these facts did nothing to block the visceral reaction we all had to seeing her in the ED laughing, walking through the overflowing department, calmly asserting a symptom without signs.

And now her family has gathered again; this time it is the ICU waiting room they overflow. Her body's shutdown is total, and the end comes in a quick 36 hours after the final turn, an event that happened during that last routine admission. It is the ultimate assault of a disease whose progression was inexorable. Her family, who brought that last hamburger into the ED just the week before, had been as familiar with navigating the circuitous maze of ED rooms as she had been. Only with her death do I begin to shed my frustration, turning it into a smile as I imagine the small, simple joy that final take-out hamburger and her circle of visitors may have brought her.