Studies have shown that as many as 40 percent of patients believed to be in a persistent vegetative state are misdiagnosed and are actually minimally conscious. Why is this? What should be done? Experts tackled these complex and difficult questions at an International Neuroethics Society (INS) event in San Diego last Friday.
There are several levels of consciousness involving awakeness and awareness. Patients in a coma are neither awake nor aware. Those in a vegetative state are awake, but not aware. Minimally conscious patients are awake with intermittent periods of awareness. There is also locked-in syndrome, in which patients are awake and aware but unable to move or communicate verbally.
Too often, patients are labeled as vegetative when in fact they are minimally conscious. Sometimes, the initial assessment is not wrong. According to Dana Alliance member Joe Fins, M.D., many who suffer a traumatic brain injury or other devastating health event that leaves them in a vegetative state remain in that state upon leaving the hospital three to four weeks later. But it is not uncommon for a patient to improve to minimally conscious some time after.
“There’s so much uncertainty [when it comes to an initial diagnosis],” said former Dana grantee Niko Schiff, M.D., also of Weill Cornell Medical College. “Often people want to make decisions early on when there’s a lot of ambiguity.” According to Fins, once a vegetative state is assumed, doctors can sometimes be reluctant to believe there has been improvement, especially if a patient is unable to speak.
Fins noted various problems that patients and their families face, such as a disinterested health care system; prompt decisions to withhold or withdraw care, often for the purposes of organ donation; and premature discharge from the hospital.
Just because there has not been noticeable improvement in the first month or two after the injury, or even much longer, doesn’t mean it will never happen. “Our understanding of recovery has changed drastically over the last few years,” Schiff said. Recovery in the brain can be a very slow process.
Court cases have shown that many factors go into end-of-life decisions: what the patient said about his or her wishes before the injury; what he or she may be trying to say now; what the surrogate is saying; and the best interest of the patient, whatever that may be.
Fins has a different perspective: “Why are we talking about a right to die before we speak of their right to care?”
The entire panel, which also included Lisa Claydon (University of Manchester) and John Pickard (University of Cambridge), agreed that there are great clinical challenges in dealing with vegetative or minimally conscious patients. As brain imaging and deep brain stimulation techniques improve, there will be more options for these patients. The experts also stressed that diagnostic mistakes are made and that clinicians and the media should be careful about calling patients “vegetative” who are responsive in some way.
And we must remember not to think of these complex issues solely in terms of “end of life” decisions. As Fins said, “Even an injured brain has the capacity to learn.”
The Dana Foundation is a supporter of the INS and has been since its inception. A video recording of the event is available online.