Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 3-12-11
The Board of Directors of the Brain Injury Network approved this position of public policy:
Rename Persistent Vegetative State (PVS) to Persistent Wakeful but Unaware State (PWUS)
Persistent Vegetative State (PVS) is a disorder of consciousness in which a patient who sustained severe brain damage is in a profound or deep state of unconsciousness over an extended period of time. In PVS, the patient is technically able to wake and goes through sleep and wake cycles, but is unable to rouse to the level of any kind of true awareness.
Probably since the 1960’s when the term PVS came into use, some have expressed disdain over the use of the word “vegetative” in the term because they have felt that the unfortunate patient in this situation was likened to a vegetable. The argument has been that the term devalues people and implies that people in this situation are less than human beings. We agree that PVS is an unnecessarily dehumanizing and hurtful term sure to add to the grief and shock of families and loved ones. There doesn’t appear to be any overwhelming medical justification to use the word “vegetative” in the term.
The key factor cited in this diagnosis, PVS, is that the patient is able to wake but is in an “unaware state”. Note that the idea of unawareness is necessary in the definition, not the word vegetative. Consequently, it is not essential that the word vegetative appear in the name of the condition. Therefore we recommend that the medical community retire the term “Persistent Vegetative State” in favor of a more illustrative and also less insensitive term.
We recommend that the term “Persistent Wakeful but Unaware State” (PWUS) be adopted by the medical community. This term includes the requisite components of the diagnosis which are wakefulness yet unawareness. In the alternative, we have noted that on occasion the term Persistent Unaware State (PUS) is used, but it is not quite as illustrative as PWUS, in our lay persons’ opinion. Neither PWUS nor PUS would be so insensitive, dehumanizing or charged a term as PVS.
It can do no harm to change the term. Thoughtful doctors can ever so slightly or perhaps sometimes mightily ease the pain that is visited upon the families and loved ones of a patient in this situation by shifting to a better phrase. It is a little thing, but why not do that little thing?
The same can be said when doctors employ the term “Permanent Vegetative State.” Generally if the patient has displayed PVS (or PWUS) for a year or more the diagnosis of Permanent Vegetative State is employed by the medical community. Please shift to the usage of Permanent Wakeful but Unaware State. Someone somewhere in the medical world must have the prestige and stature to implement this change.