Unintended consequences

Thomas Szasz said: "Formerly, when religion was strong and science weak, men mistook magic for medicine; now when science is strong and religion weak, men mistake medicine for magic". I used this quote as a jumping off point in an editorial that I wrote, coming out in Critical Care Medicine journal shortly. The editorial accompanied a study from North Carolina illustrating communication gaps between healthcare teams and families during the care of a critically ill member. You see, when a person is ill and old and frail, an acute illness can easily tip the balance for that person into a critical situation. Even something as simple as a urinary tract infection can be catastrophic and bring one to the brink, where death is inevitable without the use of "everything". Let's be very clear: when "everything" is instituted in this situation, it is the last ditch attempt to stabilize the individual so that he/she and the family can have some closure and time to make decisions before the next time comes; and it will because death is still an inevitable outcome.

Back to the study and my editorial. We have known for a long time that persons who require a prolonged course of ICU care do not do well in the long run: most of them will be dead within one year, and the survivors have persistent problems with cognition, self-care, anxiety, depression. Furthermore, the burden on the family care givers is substantial. In fact, in the North Carolina study, only 9% of the patients were alive and functioning independently one year after their critical illness. Because this knowledge is not particularly new, you would expect that the doctors talk to the patients' families about what to expect, right? Well, it turns out that this happens in less than one-third of all cases as the families are faced with making choices for their ill loved ones! And even in the rare instances when the communication does take place, families often make decisions that in retrospect seem misguided.

Of course, because nothing is completely straight-forward in medicine, there are many reasons, which I discuss in my editorial, that may account for the misaligned communications and poor decisions. For example, patients' families may be too distressed to hear the truth. Additionally, and this has happened to me, physicians may be reluctant to be completely honest about the dismal prognosis of their patient, particularly when they sense the families' distress. Also, and this is particularly shocking, the treating physician may simply be unaware of the data that I just mentioned indicating a dismal prognosis in the long term.

And these are all the reasons it is so important for the elderly and the ill and the frail to have these discussions with their families and physicians before they are tipped into critical illness; it is just a sensible and humane thing to do. This has nothing to do with the hysteria over rationing or cutting costs; it just has to do with avoiding useless and painful prolongation of real people's agony. In this vein, the fact that the Senate has removed the end-of-life discussion provision from their version of the healthcare reform bill is distressing, and has all the appearance of making an issue of critical importance into a political football. But, I have to ask myself, do we really need to legislate these discussions? Can we not simply rely on the good sense of our healthcare providers to hold them without being compelled to do so statutorily? Well, firstly, the legislation, as I understand it, is not aimed at compelling anyone to do anything of this sort. It merely provides a framework and a reimbursement mechanism for such planning. Secondly, doctors are a "mavericky" bunch, and do not like to be told what to do or be a part of the herd, and scientific evidence takes decades to diffuse into practice. And, as Dr. Gawande pointed out to us, some doctors are driven by their bottom line more so than by what is best for their patient. In the current system doing more, not doing better, buffets the bottom line. We deserve better as patients and as citizens!

As in everything about this so-called "healthcare debate", we are choosing to focus on quantity over quality. The rhetoric of "death panels" is being replaced by a less inflammatory and more culturally acceptable language of "unintended consequences". Unintended by whom? This whole bedlam is an unintended consequence of a very timely and humane idea. So, again, no good deed goes unpunished, and we continue to be told lies in the interest of political advantage. And instead of bringing in reason, the press are panting over this "debate", since it lathers the masses. Where are the voices of people who have lived "everything", who have delivered "everything", and who have learned the hard way what the term "unintended consequences" really means?