Many excellent manuscripts have been published about the post-intensive care syndrome (PICS). They are not enough. I spoke about and emphasized PICS and chronic critical illness during the opening session comments at the Society of Critical Care Medicine’s (SCCM) 2014 Critical Care Congress in San Francisco. Those comments didn’t even scratch the surface. We must deal with the reality that PICS is not one thing; it is not one uniform syndrome. PICS has many faces and many forms.
In this issue’s message, I would like to focus on a specific variant of PICS that can be troubling for many critical care professionals -- patients with advanced (or even overwhelming) diseases and comorbidities who receive valiant therapies that fail. The consequences of these pre-ICU decisions are a major cause of moral distress for all of us who work in the ICU. The trajectory of this variant of PICS includes protracted ICU stays, worse debility, suffering and, for many, decreased life span. Some of these patients may have actually lived longer had we not intervened. Why didn’t we leave them alone? They might have had more time at home, more time with family, fewer machines, fewer tubes and lines, and less delirium.
Standing in an ICU, we look at each other, watch this unstoppable trajectory, and ask, “Why?”
The prodrome of this variant of PICS often has a common feature: desperation. Watching death approach, people make choices that they hope will prolong their lives and avert suffering. Long-shot therapies. Hail Mary passes. Colossal, complex surgeries. Experimental and salvage approaches. We tell ourselves we won’t “advance the science” unless we try. Is that really true? Is that fair to patients? But who am I to decide for patients? If someone asks for a therapy, how do we decide when to say yes or no? Is ICU purgatory a mandatory waypoint?
As critical care professionals, our most important responsibility is to protect hope. When we take away hope, the outcome becomes preordained. But what if we are wrong? What if this person in the ICU bed is the exception? I’ve had an ICU survivor come back to my office, hug me, and tell me that he “forgives me” for asking his wife to stop. That sort of interaction imprints you for the rest of your life -- even for the one-in-a-million patient. It certainly did for me; I still remember his name and his face.
This sacred responsibility to protect hope is counterbalanced by our professional responsibility to counsel reality. Most people are not the exception. Almost every person is not the exception. So, how exactly do we recognize the rare exception? These medical decisions are ambiguous and cannot be both 100 percent sensitive and 100 percent specific. There is no assay to measure futility.
We live in our ICUs and so we were not present at that initial “OK, you understand the risks, we can give it a shot” conversation with patients and families. We did not look into their eyes. We did not have to explain. We did not have to deal with our own professional uncertainties. But now, we are there looking into the eyes of patients and family members in the ICU -- trying to fix what can’t be fixed, trying to stop what can’t be stopped.
Sometimes, it’s not just patients and families; we must also negotiate with the professionals who assented to the initial decision to go for it. We have a “retrospectoscope.” We are fatalistic. We don’t see the ones who made it and come back to the clinic for follow-up. But these physicians are not there in the middle of the night when we insert yet another line, tie the patient down, and keep pushing the fentanyl dose ever higher. How do we keep conversations from becoming tense or even antagonistic? All of this can become an emotional meat grinder.
So, what is the answer?
It’s not easy. It distills down to something else that we also discussed last January: boundaries. Critical care is not defined by geography. Our responsibilities are not confined to an ICU. We are equally tasked to treat and to prevent critical illness. We’ve focused on the former since the beginning of our specialty, and we are still learning about the latter. The future of critical care is preventing critical illness; this may become our highest priority.
This means that we need to increase our longitudinal involvement with ICU survivors. But, as suggested by the circumstances described, this also means that we need to be involved with ICU “previvors.” Maybe there is a pre-intensive care syndrome definition of PICS, too? Somehow, we need to be at that table, or at least materially involved, when the “let’s go for it” decisions occur. Patients and families would benefit by increasing their knowledge of the true capabilities of critical care -- understanding the ICU interface of reality and hope, and understanding the nearly immutable nature of chronic critical illness.