Patients who are in a reduced or minimally conscious state following a traumatic brain injury are often not ready to begin an active rehabilitation program.
But rehabilitation services are critical to optimize recovery until the patient emerges.
It is also vital to educate and train the patient’s family and/or caregivers about expectations and care.
For these patients, Shepherd Center’s specialized Disorders of Consciousness (DOC) Program provides pre-rehabilitation and education services.
Ford Vox, M.D., is here to discuss how research is under way at Shepherd Center and elsewhere with an eye toward new and innovative treatments for patients with a DOC.
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Disorders of Consciousness Require Early Intervention and Specialized Care
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Learn more about Ford Vox, MD
Ford Vox, MD
Ford Vox, M.D., is a staff physiatrist at Shepherd Center. He is a board-certified physical medicine and rehabilitation physician with additional subspecialty board certification in brain injury medicine. He joined Shepherd Center’s medical staff in 2012. Dr. Vox treats inpatients in the Shepherd Center Brain Injury Rehabilitation Program. Dr. Vox is also a medical journalist who has reported about health care for Bloomberg, Reuters, U.S. News & World Report, The Atlantic Magazine, Newsweek and The Los Angeles Times. He is a contributing writer for CNN Opinion specializing in analysis on health care policy, industry and medical practice.Learn more about Ford Vox, MD
Transcription:
Disorders of Consciousness Require Early Intervention and Specialized Care
Melanie Cole (Host): Patients who are in a reduced or minimally conscious state following a traumatic brain injury are often not ready to begin an active rehabilitation program but rehabilitation services are critical to optimize recovery until the patient emerges. My guest today is Dr. Ford Vox. He’s a staff physiatrist at Shepherd Center. Welcome to the show, Dr. Vox. What is a DOC patient and how does that differ from typical brain injury patient?
Dr. Ford Vox (Guest): Well, thanks for having me on, Melanie. A DOC patient, or disorders of consciousness patient, this can occur from a variety of different diagnosis. In this context today, we are talking primarily about traumatic brain injury. Those people who have been injured by some type of external insult as opposed to perhaps the end stage of some other disease process. In disorders of consciousness patients among this class, we’re talking about people who were often quite healthy perhaps before. They could sometimes be even quite young. We treat people in our program beginning at age 13 and up. Obviously, a traumatic brain injury can occur to anyone of any age. In summary, a disorders of consciousness state includes anywhere from coma to vegetative state when the sleep wake cycle starts to return and people are kind of spontaneously opening their eyes during the day; and also the state we now know as minimally conscious. It’s important to distinguish between the vegetative and minimally conscious state.
Melanie: Where are they typically treated?
Dr. Vox: This is a problem we have in the American healthcare system that Shepherd Center has really creatively addressed. There is not a specific place to treat these patients classically. They’re left in a hole because they are not that so-called rehabilitative level of care where classically you might think of a rehab patient being able to follow the instructions of a therapist. That would seem to be a key concept and that certainly is a concept that most insurers endorse, understandably so perhaps. But now that medicine has evolved--it’s 2015--we have quite a lot that we can do to manage patients who are in a state of disorders of consciousness both in terms of diagnostically determining really what level of consciousness they are at and also preventing secondary complications. We have a lot of work to do on the body of a patient so that they’re able to fully participate in a rehabilitation program where we’re able to get them to that point. But, going back to what I was saying about these patients kind of getting caught in a “no man’s land”, there becomes an issue when sometimes the acute medical stage, often centered around an initial neurosurgery ends, and these patients are often then sent to what is called an L-TAC, a long-term acute care facility or to a skilled nursing facility. There are only a few programs like Shepherd’s around the country where we are intensively treating these patients from a brain injury rehabilitation paradigm while they may still be unconscious. We have been able to do that because we are very much capitalizing around the medical complexities of these cases and we’re seeing good outcomes.
Melanie: That’s fascinating. What are the key elements of Shepherd’s DOC program?
Dr. Vox: When it comes to the disorders of consciousness programming, it’s key in the first place that, I think, you have got to have the right clinicians involved. These are clinicians, like myself and my colleagues, who are subspecialty trained. We come from a variety of fields. People who can treat these patients appropriately in terms of kind of being the captain of the ship like a physiatrist, such as my field, or neurology. There is a new specialty in medicine now called “brain injury medicine” which just came online last year and we offer board certifications for that now in special training and fellowship programs for that. In terms of what we’re doing here and a key element of our programs recognize that a lot of medicine still needs to occur in these patients who are often going back and forth between the O.R. as well. There may be a variety of plastic surgeries, orthopedic surgeries, neurosurgical procedures that need to be done. Shepherd Center is linked to a tertiary care hospital called Piedmont Hospital and we often use their O.R.’s, for example. We have all of the other medical specialties around here as well consulting our patients for the variety of other polytrauma that may be associated with the severe traumatic brain injury, for example. In terms of the key element of the program is keeping close track of the patient’s emergence of their level of consciousness. We use a behavioral scale called the “JFK Coma Recovery Scale”, revised, which takes special training to perform appropriately. It’s time intensive. It’s not something you typically going to see deployed at an acute hospital. That is key keeping close track of the patient’s emergence into consciousness or to also detect fluctuations which can be signs of adverse events that we need to treat soon. One common problem that I do see in patients who are coming to me many weeks or months later are issues that we perhaps could have treated earlier and could potentially lead to better outcomes. We do feel that we are often catching problems sooner. Problems with the endocrine system, for example. Problems with the fluid balance in the brain; certainly, problems with the musculoskeletal system before they lead to long-term issues.
Melanie: How do you measure the response in these reduced states of consciousness? Is this for the parents or for the loved ones? If they’re sitting with this person, Dr. Vox, are they just sitting there all day waiting for this person to open their eyes--to wake up? Are you giving them exercise while they are there? Tell us a little bit about the whole process.
Dr. Vox: We actively get these patients up, start moving them. We’re obviously trying to preserve range of motion. We’re simulating all five senses. We are using different types of stimulant medication. We use a variety of medications. There is one for which we have fairly good evidence that it tends to shorten the amount of time that people spend in a DOC state. That is Amantadine. There was a good New England Journal of Medicine trial that came out in 2012 demonstrating that evidence. In individual anecdotal cases we are seeing other things that help as well in individual cases. Obviously, each TBI patient is fairly unique in terms of the constellation of contusions, injuries and so forth and the interplay with the other medical things that may be going on. In terms of the therapy, a variety of problems may start in the body once you develop a disorders of consciousness state. One common scenario is the disorder of the autonomic nervous system which is responsible for regulating our heart rate, for regulating our blood pressure and sweating and so forth. This system can really go haywire. It leads to a situation we often refer to as paroxysmal sympathetic hyperactivity, aka neurostorming. You may hear us use that term as well. This is a situation that is commonly treated with very heavy sedating types of medications, IV Propofol, large doses of benzodiazepines. We’re managing this state more successfully with using milder medications for the brain, higher doses of beta blockers, for example. Even IV Tylenol known as Ofirmev is actually far more effective and is a very good central nervous system penetrant and is able to treat this state more effectively. Then, we are intervening early with a surgical procedure called an “implanted intrathecal Baclofen pump.” This enables us to deliver a medication that is commonly given orally at most centers and can cause some depression of the brain. If we deliver it directly to the spinal canal, actually we are able to see much more improvement in terms of this storming state and treat the patient’s spasticity earlier and more effectively so that later surgical procedures aren’t required to release contracted extremities, for example.
Melanie: Tell us about the predictive emergent model Shepherd Center is producing.
Dr. Vox: That’s right. So, Shepherd Center is blessed in the fact that we do have a research department here and we have full-time researchers who collaborate with our clinicians. In terms of our predictive emergence model, we also recognize that when it comes to DOC, we are certainly one of the largest centers in the United States, probably the largest. We took a collection of over 200 of our patients and looked for what markers that we could find, statistically speaking, that helped project and predict whether they would emerge over the course of their in-patient hospitalization during the DOC program at Shepherd and using that model we’re able to build a retrospective database that to compare any given patient going forward with. So, this is a unique way of doing research where it’s very difficult in this population given that, although we talk about relatively large numbers here at Shepherd, those large numbers still pale in comparison when you are talking about some other medical condition, like heart disease or various cancers and so forth in terms of patients who are being treated in programs like these who have access, potentially, to research. It is still a very small population. We need to be able to compare patients retrospectively to similar patients that we’ve treated before them. This enables us to, basically, when we do this by statistical model, we can project with about 88% certainty whether the person is likely to emerge in our program if we just treated them the usual way. Then, we can look at new interventions as they come down the pike: different kinds of medications, combinations that we want to try, other types of stimulant interventions, like the transcranial direct stimulation or TMS. Then, we can compare their outcome versus what we might have expected anyway. One general problem in brain injury medicine is the fact that many patients are destined to improve gradually over a long period of time. A constant issue that we see played out in the literature time and time again is small collections of patients where the clinician gives drug “X” and believes that drug “X” may be the difference between the patient’s recovery. But, in actuality, we’ve got to be able to separate that from the natural recovery that we may expect. I certainly don’t congratulate myself, or pat myself on the back with every recovery that I see. We know, in general, that a program such as ours is certainly helping people in terms of preventing secondary complications and speeding recovery but we’ve really got to start to parse out in this field where the big difference is between the different things that we do. We are very much, again, capitalizing on our research department to launch this program. We’ve just developed the model and are excited about the possibilities.
Melanie: In just the last minute, Dr. Vox, what do you want the listeners to know when they’re considering DOC treatment for their loved one?
Dr. Vox: When you’re looking at DOC treatment, you really want to find a place where you’re going to have confidence that basically everything is being done that can be done. One common scenario that we get into is the fatalistic model where you have an unconscious patient who maybe hasn’t responded well initially to the initial neurosurgery. Families are too often told that this person needs to be warehoused for custodial care in a skilled nursing facility for an indefinite amount of time. I think, in so many cases, particularly when we’re talking about younger people, that is the wrong decision. I think you need to give your loved one the best opportunity in terms of matching them with clinicians who are specialized in this field of medicine – which is brain injury medicine – who are going to be treated by subspecialist therapists as well and who have access to creative thinking as well. It’s not necessarily that we are going to be able to keep every single patient in a program like ours until the day that they emerge. These are all somewhat time limited programs, typically on the order of 4-6 weeks or so, around that initial phase. Obviously, we have various outcomes from our programs. Some patients are emerging and going into a classic rehab program and on from there. For those patients who do not emerge, we view it as equally important the fact that we are training family appropriately to be able to care for their loved one at home safely to keep them from bouncing back and forth between E.R.s and hospitalization. We are keeping track of those people so that, hopefully, they will come back to our rehab program at a later date.
Melanie: I certainly applaud all of the work that you’re doing, Dr. Vox. Thank you so much for being with us today. You're listening to Shepherd Center Radio. For more information, you can go to Shepherd.org. That's Shepherd.org. This is Melanie Cole. Thanks so much for listening.
Disorders of Consciousness Require Early Intervention and Specialized Care
Melanie Cole (Host): Patients who are in a reduced or minimally conscious state following a traumatic brain injury are often not ready to begin an active rehabilitation program but rehabilitation services are critical to optimize recovery until the patient emerges. My guest today is Dr. Ford Vox. He’s a staff physiatrist at Shepherd Center. Welcome to the show, Dr. Vox. What is a DOC patient and how does that differ from typical brain injury patient?
Dr. Ford Vox (Guest): Well, thanks for having me on, Melanie. A DOC patient, or disorders of consciousness patient, this can occur from a variety of different diagnosis. In this context today, we are talking primarily about traumatic brain injury. Those people who have been injured by some type of external insult as opposed to perhaps the end stage of some other disease process. In disorders of consciousness patients among this class, we’re talking about people who were often quite healthy perhaps before. They could sometimes be even quite young. We treat people in our program beginning at age 13 and up. Obviously, a traumatic brain injury can occur to anyone of any age. In summary, a disorders of consciousness state includes anywhere from coma to vegetative state when the sleep wake cycle starts to return and people are kind of spontaneously opening their eyes during the day; and also the state we now know as minimally conscious. It’s important to distinguish between the vegetative and minimally conscious state.
Melanie: Where are they typically treated?
Dr. Vox: This is a problem we have in the American healthcare system that Shepherd Center has really creatively addressed. There is not a specific place to treat these patients classically. They’re left in a hole because they are not that so-called rehabilitative level of care where classically you might think of a rehab patient being able to follow the instructions of a therapist. That would seem to be a key concept and that certainly is a concept that most insurers endorse, understandably so perhaps. But now that medicine has evolved--it’s 2015--we have quite a lot that we can do to manage patients who are in a state of disorders of consciousness both in terms of diagnostically determining really what level of consciousness they are at and also preventing secondary complications. We have a lot of work to do on the body of a patient so that they’re able to fully participate in a rehabilitation program where we’re able to get them to that point. But, going back to what I was saying about these patients kind of getting caught in a “no man’s land”, there becomes an issue when sometimes the acute medical stage, often centered around an initial neurosurgery ends, and these patients are often then sent to what is called an L-TAC, a long-term acute care facility or to a skilled nursing facility. There are only a few programs like Shepherd’s around the country where we are intensively treating these patients from a brain injury rehabilitation paradigm while they may still be unconscious. We have been able to do that because we are very much capitalizing around the medical complexities of these cases and we’re seeing good outcomes.
Melanie: That’s fascinating. What are the key elements of Shepherd’s DOC program?
Dr. Vox: When it comes to the disorders of consciousness programming, it’s key in the first place that, I think, you have got to have the right clinicians involved. These are clinicians, like myself and my colleagues, who are subspecialty trained. We come from a variety of fields. People who can treat these patients appropriately in terms of kind of being the captain of the ship like a physiatrist, such as my field, or neurology. There is a new specialty in medicine now called “brain injury medicine” which just came online last year and we offer board certifications for that now in special training and fellowship programs for that. In terms of what we’re doing here and a key element of our programs recognize that a lot of medicine still needs to occur in these patients who are often going back and forth between the O.R. as well. There may be a variety of plastic surgeries, orthopedic surgeries, neurosurgical procedures that need to be done. Shepherd Center is linked to a tertiary care hospital called Piedmont Hospital and we often use their O.R.’s, for example. We have all of the other medical specialties around here as well consulting our patients for the variety of other polytrauma that may be associated with the severe traumatic brain injury, for example. In terms of the key element of the program is keeping close track of the patient’s emergence of their level of consciousness. We use a behavioral scale called the “JFK Coma Recovery Scale”, revised, which takes special training to perform appropriately. It’s time intensive. It’s not something you typically going to see deployed at an acute hospital. That is key keeping close track of the patient’s emergence into consciousness or to also detect fluctuations which can be signs of adverse events that we need to treat soon. One common problem that I do see in patients who are coming to me many weeks or months later are issues that we perhaps could have treated earlier and could potentially lead to better outcomes. We do feel that we are often catching problems sooner. Problems with the endocrine system, for example. Problems with the fluid balance in the brain; certainly, problems with the musculoskeletal system before they lead to long-term issues.
Melanie: How do you measure the response in these reduced states of consciousness? Is this for the parents or for the loved ones? If they’re sitting with this person, Dr. Vox, are they just sitting there all day waiting for this person to open their eyes--to wake up? Are you giving them exercise while they are there? Tell us a little bit about the whole process.
Dr. Vox: We actively get these patients up, start moving them. We’re obviously trying to preserve range of motion. We’re simulating all five senses. We are using different types of stimulant medication. We use a variety of medications. There is one for which we have fairly good evidence that it tends to shorten the amount of time that people spend in a DOC state. That is Amantadine. There was a good New England Journal of Medicine trial that came out in 2012 demonstrating that evidence. In individual anecdotal cases we are seeing other things that help as well in individual cases. Obviously, each TBI patient is fairly unique in terms of the constellation of contusions, injuries and so forth and the interplay with the other medical things that may be going on. In terms of the therapy, a variety of problems may start in the body once you develop a disorders of consciousness state. One common scenario is the disorder of the autonomic nervous system which is responsible for regulating our heart rate, for regulating our blood pressure and sweating and so forth. This system can really go haywire. It leads to a situation we often refer to as paroxysmal sympathetic hyperactivity, aka neurostorming. You may hear us use that term as well. This is a situation that is commonly treated with very heavy sedating types of medications, IV Propofol, large doses of benzodiazepines. We’re managing this state more successfully with using milder medications for the brain, higher doses of beta blockers, for example. Even IV Tylenol known as Ofirmev is actually far more effective and is a very good central nervous system penetrant and is able to treat this state more effectively. Then, we are intervening early with a surgical procedure called an “implanted intrathecal Baclofen pump.” This enables us to deliver a medication that is commonly given orally at most centers and can cause some depression of the brain. If we deliver it directly to the spinal canal, actually we are able to see much more improvement in terms of this storming state and treat the patient’s spasticity earlier and more effectively so that later surgical procedures aren’t required to release contracted extremities, for example.
Melanie: Tell us about the predictive emergent model Shepherd Center is producing.
Dr. Vox: That’s right. So, Shepherd Center is blessed in the fact that we do have a research department here and we have full-time researchers who collaborate with our clinicians. In terms of our predictive emergence model, we also recognize that when it comes to DOC, we are certainly one of the largest centers in the United States, probably the largest. We took a collection of over 200 of our patients and looked for what markers that we could find, statistically speaking, that helped project and predict whether they would emerge over the course of their in-patient hospitalization during the DOC program at Shepherd and using that model we’re able to build a retrospective database that to compare any given patient going forward with. So, this is a unique way of doing research where it’s very difficult in this population given that, although we talk about relatively large numbers here at Shepherd, those large numbers still pale in comparison when you are talking about some other medical condition, like heart disease or various cancers and so forth in terms of patients who are being treated in programs like these who have access, potentially, to research. It is still a very small population. We need to be able to compare patients retrospectively to similar patients that we’ve treated before them. This enables us to, basically, when we do this by statistical model, we can project with about 88% certainty whether the person is likely to emerge in our program if we just treated them the usual way. Then, we can look at new interventions as they come down the pike: different kinds of medications, combinations that we want to try, other types of stimulant interventions, like the transcranial direct stimulation or TMS. Then, we can compare their outcome versus what we might have expected anyway. One general problem in brain injury medicine is the fact that many patients are destined to improve gradually over a long period of time. A constant issue that we see played out in the literature time and time again is small collections of patients where the clinician gives drug “X” and believes that drug “X” may be the difference between the patient’s recovery. But, in actuality, we’ve got to be able to separate that from the natural recovery that we may expect. I certainly don’t congratulate myself, or pat myself on the back with every recovery that I see. We know, in general, that a program such as ours is certainly helping people in terms of preventing secondary complications and speeding recovery but we’ve really got to start to parse out in this field where the big difference is between the different things that we do. We are very much, again, capitalizing on our research department to launch this program. We’ve just developed the model and are excited about the possibilities.
Melanie: In just the last minute, Dr. Vox, what do you want the listeners to know when they’re considering DOC treatment for their loved one?
Dr. Vox: When you’re looking at DOC treatment, you really want to find a place where you’re going to have confidence that basically everything is being done that can be done. One common scenario that we get into is the fatalistic model where you have an unconscious patient who maybe hasn’t responded well initially to the initial neurosurgery. Families are too often told that this person needs to be warehoused for custodial care in a skilled nursing facility for an indefinite amount of time. I think, in so many cases, particularly when we’re talking about younger people, that is the wrong decision. I think you need to give your loved one the best opportunity in terms of matching them with clinicians who are specialized in this field of medicine – which is brain injury medicine – who are going to be treated by subspecialist therapists as well and who have access to creative thinking as well. It’s not necessarily that we are going to be able to keep every single patient in a program like ours until the day that they emerge. These are all somewhat time limited programs, typically on the order of 4-6 weeks or so, around that initial phase. Obviously, we have various outcomes from our programs. Some patients are emerging and going into a classic rehab program and on from there. For those patients who do not emerge, we view it as equally important the fact that we are training family appropriately to be able to care for their loved one at home safely to keep them from bouncing back and forth between E.R.s and hospitalization. We are keeping track of those people so that, hopefully, they will come back to our rehab program at a later date.
Melanie: I certainly applaud all of the work that you’re doing, Dr. Vox. Thank you so much for being with us today. You're listening to Shepherd Center Radio. For more information, you can go to Shepherd.org. That's Shepherd.org. This is Melanie Cole. Thanks so much for listening.