Rage, rage against the dying of the light: The Fighter and the Pyrrhic Victory

It's only been two days since my last post on prognosis and end-of-life care in the ICU, and I'm anxious to blog about today's NEJM article on low tidal volume in the operating room on the Medical Evidence Blog, but the happenings around me already today mandate another post about realistic prognostication and it's effective communication.

When I make an assessment of a patient in the ICU, my list of summary conditions and conclusions often looks something like this:




ASSESSMENT:

1. Advanced age
2. Poor Functional Status
3. Malnutrition/Cachexia
4. Swallowing dysfunction
5. S/P fall and hip fracture
6. Aspiration pneumonia
7. Congestive Heart Failure
8. Respiratory failure
9. Renal failure
10. Poor Prognosis for both survival and return to independent livinng
    

This is not the norm.  The norm is to methodically list all of the acute and chronic medicalized and pathophysiologically interesting diagnoses.  In that vein, obvious things that can't be traced to a medically interesting and well delineated disease cascade are left out (such as advanced age and poor functional status.)


I do this to set the perspective for my portrait:  It's a landscape, not a close-up profile shot.  As such, it allows the patient's condition to be seen in the context of several prognostically important, but frequently neglected data pieces.  The picture above is of an elderly person whose body is worn down by the ravages of aging (and chronic disease).  The proximal features of the case (1-4) set the stage for and led to the distal features (5-9).  This is not only critically important for the practitioner to understand, but also outlining the case in this kind of narrative is crucially important in helping the family understand what's going on, how we got here, and where we're likely to wind up in several days, weeks, or months.

But, as always, objections and rationalizations will arise, from both other practitioners and patient's family members.  I'll list several of them and describe the logical basis for dispelling them below.  Obviously, undoing a rationalization requires more than logic.  The couching can be done ad lib or be refined based on individual preferences and personalities.

"Last week, he was fine."
This is less likely to come up if a narrative like the one I allude to above is the preamble to the discussion.  In any case, last week, he was not in the hospital moribund with critical illness, but he was not fine.  He still had advanced age, was dependent on Meals-On-Wheels, was falling down, and had been losing weight, aspirating and suffering from undiagnosed congestive heart failure.  [Moreover the family was growing concerned that he might have to move in with them.]  These things had just not yet precipitated into a torrent of acute illness. It is useful to return to a narrative describing the natural history of the aging process and the developing frailty that often accompanies it to refocus the discussion.

"Just the other day, he was playing golf."
This often comes up when someone did indeed have good functional status, but a cataclysmic illness befell the patient, such as a large post-obstructive pneumonia that was indolent but suddenly became clinically manifest.  In these cases, practitioners must focus on a.) the fact that a prognosis can change dramatically with one catastrophic event; and b.) debunking the notion that all illnesses progress at a slow and predictable pace.

"He's had congestive heart failure for years."
This statement reflects the unfounded expectation that certain diseases, when present and chronically compensated for, will remain static or decline at a slow and predictable pace without any sudden deteriorations.  It is often useful to invoke reminders about the overall prognosis of CHF - a 50% mortality at 5 years - to emphasize that the patient has been lucky to have lived so well with CHF for so many years.

"He's a fighter."
It is hard to do, but I think it helpful to acknowledge this but remind folks that the will to fight (Rage, rage, against the dying of the light) has limited relevance in situations where a propofol drip is involved, and that some victories are Pyrrhic - where does the fight get him?

This question, "where does the fight get him?" segues to two very important perspectives that should often be introduced into the discussion.  If he survives this acute illness, where will he be in 6 weeks or 6 months?  I've blogged before about the issue of nursing homes, vilified by so many.  But supposing we imagine a different, a best case scenario - one in which the acute illness melts away and leaves the patient how he was before the acute deterioration.  Again, we need to "zoom out" and get further away to see more clearly.  Well, in my assessment above, let's say the hip fracture was the event that incited the acute admission.  Even if he recovers from it, and the associated complications of aspiration pneumonia and respiratory failure, we are still left with 1-4 and 7.  The context is still there, and something like this unfortunately is going to happen again.  1-4 and 7 cannot be reversed.  Do we really want to proceed with this course of treatment so that we are back to where we started, struggling to survive independently and waiting for the next inevitable deterioration?  Maybe.  Maybe not.

Finally, sometimes the "super zoomed-out" perspective is useful to help people become more at ease with the enormity of a loved one's impending death.  Imagine it is two years from now.  Two years from now, it will not matter if he died on August 4th or August 24th.  What will  matter are the circumstances under which he died, whether or not he suffered, was in pain, tied to a bed, unable to speak, etc.

That perspective refocuses the discussion on the inevitability of death for everyone.  It's not a matter of if a person will die, and sometimes exactly when is also largely irrelevant.  How a person dies is the tragically neglected part of the equation, and we desperately need to begin to concert our efforts there.