ABOUT JOSEPH GIACINO
Joseph Giacino, PhD has been an influential clinical neuropsychologist who has helped to advance our understanding of very special persons who after severe brain injury remain in a prolonged period of low response. Dr. Giacino’s work has over the years resulted in a more precise description and diagnosis of persons in these states.
Dr. Giacino is a neuropsychologist who earned his Ph.D. in clinical/school psychology at Hofstra University in 1986. In addition to maintaining a private practice, Dr. Giacino is currently the associate director of neuropsychology at both the JFK Johnson Rehabilitation Institute and the New Jersey Neuroscience Institute at the JFK Medical Center. He serves as an associate professor and adjunct faculty member at Seton Hall University in the School of Graduate Medical Education and the Department of Neuroscience. He is also a clinical assistant professor at the University of Medicine and Dentistry of New Jersey.
Dr. Giacino is a sought after speaker and has made many professional presentations over the years. Dr. Giacino has authored over 40 peer reviewed publications and 6 book chapters, as well as many letters to the editor, newsletter and magazine articles, test and treatment manuals, and published abstracts. He has four active grants, including "A collaborative study of recovery of consciousness after severe brain injury (McDonnel Foundation)," "An investigation of the effectiveness of functional MRI for detection of conscious awareness and rehabilitation planning in individuals with disorders of consciousness (NIDRR)," "Electrical stimulation of the thalamic intralaminar nuclei for treatment of the minimally conscious state (FDA)," and "A multicenter prospective randomized controlled trial of amantadine hydrochloride to promote recovery of function following severe traumatic brain injury (NIDRR)."
While many have been involved in helping to better identify the needs and care of individuals with disorders of consciousness, Dr. Giacino has provided excellent leadership as well as academic and scientific rigor to our efforts. Dr. Giacino has also provided the drive and passion to a field of investigation that may have gone unnoticed to the clinician in daily practice. The following interview has provided us further insight into the history and ongoing needs of these individuals. I want to express my appreciation and underscore the needed recognition of Dr. Giacino and the very important work through which he has guided us all.
How did you get interested in disorders of consciousness?
In 1982 watching a newsmagazine presentation on television regarding a new sensory stimulation treatment program for persons in a vegetative state I realized that the program was talking about the hospital where I was about to begin my clinical internship. Once there for the year I asked if I might meet the neurosurgical team working on this program. This was well before the sensory stimulation programs were being used and this peaked my interest. The neurosurgeon was welcoming and I began to learn about these conditions. The report of improvement in persons who were diagnosed as in a vegetative state was most interesting and I decided to do my dissertation in this area. They were very willing to have me participate and I undertook exploration of two questions: 1. did patients get better from this treatment and 2. could families comply and keep to the required 11 hours a day of stimulation that was prescribed. This allowed me to see the very basic problems of both the individual being treated and the requirements of the family.
How did the diagnosis of minimally conscious come about?
In the early years it was clearly mentioned and discussed that there was a sub group of patients who were not being correctly identified given the traditional categories being used of comatose and vegetative. These patients were inconsistently responsive with moments of higher level response than what was traditionally known for the person either in a coma or in a vegetative state.
I had the opportunity to participate on an American Congress of Rehabilitation Medicine committee headed by Shelly Berrol, M.D. that was dedicated to the vegetative state. With the untimely passing of Dr. Berrol, I was able to participate in a leadership role having the committee continue its work. I was able to also work with such recognized professionals as Drs. Nathan Zasler, Doug Katz, Ross Zafonte and John Whyte. In the course of our work we began to talk about these patients that were inconsistently responsive. For example their level of response to the environment would vary throughout the day. Staff, therapists and family would report differing responses and this required us to start looking at the way the patient responded not just when we were examining them but how they responded throughout the day. We recognized these patients as a somewhat separate group from the traditional categories. There was no effort to differentiate those who were transitioning through this state of inconsistent responsiveness from those that were to go on to a more persistent state. We now know that MCS is typically a transitional state of reduced responsiveness that usually results in a higher neurocognitive level of functioning. However, for some, this state may be a prolonged or more permanent state of low neurocognitive functioning. Initially these patients were described as being in a "minimally responsive state". I now believe the vast majority are in transition and are capable of a wide range of responses. In time this group of individuals was described as "minimally conscious" to reflect the fact that they showed clear-cut, albeit inconsistent, behavioral signs of consciousness.
What are the critical features for diagnosis?
Severely injured persons can appear very similar on initial clinical presentation and until more recently there were no tools to systematically measure or monitor their progress. Variability of response is the critical factor in both describing and understanding those in a minimally conscious state. Their behavior will fluctuate throughout the day and result in considerable response inconsistency. This fluctuation makes diagnosis a challenge, requiring serial assessment rather than a one-time evaluation. Because they do not stay at the same point throughout the day or between situations, proper diagnosis is a moving target. This places the burden on the examiner to properly capture multiple observations and measurements. The examiner must have the patience to watch the person over time and throughout various situations. There may even be fluctuations that are not only temporal or situational but may be related to the personal significance and meaningfulness of the stimuli presented. There may be variability in how the person responds to various persons working with him or her, some of whom may be more familiar and others who are strangers. Electrophysiological and fMRI studies comparing brain actrivation to meaningful or relevant stimulation versus neutral or ambiguous stimulation have begun to shed light on the importance of stimulus characteristics.
On any given assessment, the patient’s responses are a product of patient variables, temporal and situational variables and examiner variables. Standardized administration of measurement tools, observations and consistency in the examiner all become increasingly more important. We have tried to identify the key variables that predict emergence from a minimally conscious state and there is growing agreement that visual pursuit or visual tracking is an important early indicator prognostic sign.
There may be variability in arousal, indications and degrees of awareness and even the presence or absence of basic communication. All three variables can co-vary or become expressed in one.
What treatments are currently being used?
We have been trying to find treatments for persons in a minimally conscious state for many years. Some of the original efforts attempted to look at carefully planned and executed schedules of stimulation. Sensorystimulation approaches were amongst the earliest to address individuals in all states of diminished responsiveness. Results have been variable but this may relate more to methodologic problems and the heterogeneity of this patient population.
Beginning in the 1980's, pharmacological interventions began to be used with greater frequency to promote recovery. Varying agents from dopamine agonists to GABA enhancing medications are being explored with renewed interest, although well designed clinical trials are lacking. Currently there is a large scale clinical trial investigating the effectiveness of amantadine that John Whyte, M.D., Ph.D and I are coordinating. We expect initial data analysis to begin in late 2009. Other medication trials (eg, zolpidem) incorporating new technologies such as fMRI are also underway. The hunt for neuromodulatory agents that can effectively change or restore the injured brain has never been more active.
Probably the most novel treatment innovation has been deep brain stimulation. A multicenter collaboration involving the JFK Johnson Rehabilitation Institute, Weill-Cornell Medical College and the Cleveland Clinic have recently published case studies describing the use of deep brain stimulation in a patient diagnosed with MCS. This area of investigation requires more conceptual development and research, but represents an innovative and promising area.
What is on the horizon? Dr. Giacino, I want to thank you for your time and comments. Again, I want to express my appreciation for your interest, concern and leadership. You have provided a drive, focus and scientific rigor that are exceptional.
I think there will continue to be efforts to find medications that stimulate the brain but there will be more of an emphasis on neuromodulatory agents that can actually change brain substrate. There is some positive evidence that warrants further research; however, to be successful, large multicenter trials will need to be conducted.
A related area of growing importance is that of neuro-ethics. The care of these patients in vegetative or minimally conscious states has provoked a series of questions regarding not only who they are but who we are as a society. Led by bioethicists such as Joseph Fins, MD and Judy Illes, PhD, there is growing discussion regarding the evaluation and especially the treatment of these individuals. There are a number of unrecognized factors that influence clinical decision making. The work of Fins, Illes and others have allowed us to take a broader view of ourselves and re-consider how we might best proceed.
There are relatively few institutions around the country that have taken on the task of responding to the needs of persons with disorders of consciousness. In view of the monumental size of the problem, it is my sincere hope that these centers as well as new ones, can access the support and resources necessary to advance clinical practice in this area.
Dr. Giacino, I want to thank you for your time and comments. Again, I want to express my appreciation for your interest, concern and leadership. You have provided a drive, focus and scientific rigor that are exceptional.
From Brain Injury Professional, the official publication of the North American Brain Injury Society, Vol. 6, Issue 1. Copyright 2009. Reprinted with permission of NABIS and HDI Publishers. For more information or to subscribe, visit: www.nabis.org.
Brain Injury Professional is the largest professional circulation publication on the subject of brain injury and is the official publication of the North American Brain Injury Society. Brain Injury Professional is published jointly by NABIS and HDI Publishers. Members of NABIS receive a subscription to BIP as a benefit of NABIS membership. Click here to learn more about membership in NABIS.