Chronically Critically Ill and Stable

The New York Times ran an article by a doctor, When the Patient Won’t Ever Get Better, which illustrates a difficult scenario for patients and families.  A patient, doing well, is hospitalized for some condition, surgery may occur and although successful, subsequently the patient develops one health problem after another, and will never recover to her condition prior to the hospitalization.  Detailing the ups and downs of one patient, the doctor describes the patient “[a]nd then, things stopped getting better. Time slowed. There she was – neither dead nor truly alive – stuck, it seemed, in limbo.”  The patient declined again, more infections, use of a ventilator, etc. and then “[w]ith … [the] constellation of ventilation dependence, infections and delirium, she had what doctors call ‘chronic critical illness.’”

According to the author, this isn’t that unusual a story.

[T]here are about 100,000 chronically critically ill patients in the United States at any one time, and with an aging population and improving medical technologies, this number is only expected to grow. The outcomes of these patients are staggeringly poor. Half of the chronically critically ill will die within a year, and only around 10 percent will ever return to independent life at home.

We can all imagine the scenario where our parent has a health crisis and all we want to know is whether she survived and is she “stable.”  After time passes, we learn that she is stable, but is chronically critically ill and won’t improve.  Here’s how the author describes the situation

In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? …. 

Perhaps this reality would be a good situation to use to discuss with our students whether they can draft language in an advance directive to deal with these situations.