Not long ago, I noticed water dripping into our home’s crawl space. After a costly visit from the plumber, I received our diagnosis – a faulty Jacuzzi bathtub. For months, water had been accumulating under the tub, resulting in a wet and moldy subfloor. At this point, I was faced with several options, none of them pleasant. I could; 1) remove the tub and subfloor and start over; 2) attempt to repair the tub with a tinkering approach and 3) do nothing and hope for the best. Option 1 would be costly and inconvenient – it would take the bathroom out of service for weeks. Option 2 was not guaranteed to work and, in my estimation, a temporary fix at best. Option 3 did not really seem like an option, because it would lead to more water, more mold and, eventually, certain disaster. And so, I bit down hard, charged a new bathtub, and scheduled demolition and re-installation.
At first, I was quite certain that I’d made the right decision. But then, I started to imagine what could go wrong. What if the contractor showed up smelling like rotten cabbage and tracking dirt throughout the house? What if my wife didn’t like the look of the new tub and demanded that we send it back? What if the plumber wore a shirt that screamed “ER Doctors Suck.” That would suck and I certainly would be tempted to call off the project. But, what would that get me? Nothing more than a wet and moldy mess.
I’ve been thinking about this dilemma in the context of tomorrow’s televised health care event. The debate over health reform has devolved from focusing on necessity to distraction, distortion and inflamed rhetoric. And, sadly, in the fray many have lost sight of what matters. Much like the leak in my bathroom, the problems with health care in this country – the inequities of care, the runaway costs and the perverse incentives – will not fix themselves. So, it is time to do the right thing, the ethical thing, and the smart thing, and move forward with changing how we view the business of health care. Tomorrow, our elected representatives should take heed of what a former senator once said about health care reform; “At stake are not just the details of policy, but fundamental principles of social justice.”
Wednesday, February 24, 2010
Sunday, February 14, 2010
Descartes before the horse (Marin IJ)
“Physicians and society are not ready for ‘I have brain activation, therefore I am.’ That would seriously put Descartes before the horse.”
The above statement comes from a New England Journal of Medicine (NEJM) editorial by the esteemed neurologist Allan H. Ropper. Dr. Ropper was referring to an accompanying NEJM study of 54 brain injured patients in which four patients thought to be in a persistent vegetative state (PVS) actually demonstrated the ability to control brain activity – in one case enough to answer simple yes or no questions – via the “activation” images on a functional MRI (fMRI). The study follows on the heels of the story of Rom Houben – a 46-year-old Belgian man thought to have been in a PVS for over twenty years. Recently, doctors, with the help of fMRI, diagnosed Houben with locked-in-syndrome – a rare neurologic condition that prevents the brain’s impulses (intentions to act, speak, etc.) from reaching the rest of the body. With Houben’s case and the newly released NEJM study, we have fresh wrinkles in the centuries old debate of where the brain ends and the mind begins. The question of the moment – as posed by Dr. Ropper – is whether fMRI activation, in the absence of other signs of awareness, is evidence of “life” in the brain? And if it is, what does this mean for the estimated 15,000 Americans currently considered to be in a vegetative state?
To address these questions, let’s first make an important distinction. Research shows that that people who have become “vegetative” due to brain trauma have a greater chance of recovering than those who have ended up “vegetative” because their brains were deprived of oxygen (such deprivation is called an “anoxic” event). Current thinking is that patients in the anoxic group (patients like Terri Schiavo) will either improve in the first three months or, sadly, never. The recent NEJM study supports this thinking in that none of the study’s patients who had suffered anoxic brain injury showed any evidence of being able to modulate brain activity. Among the patients who had suffered traumatic brain injury, however, the evidence was clearly much different. While it was previously thought that patients with traumatic brain injury were not likely to improve after the first year post-injury, Rom Houben’s circumstances and the NEJM study seem to call that one-year-deadline into question.
It seems then that we can expect minimal benefit from using fMRI on PVS patients with a history anoxic brain injury. In cases of traumatic brain injury, on the other hand, fMRI may be useful. But we must keep in mind that fMRI has a critical weakness: its results can only be considered definitive if positive .If the result is negative (no evidence of conscious brain activity), the patient might be asleep. This means that a negative fMRI can, at best, be part of an integrated evaluation process – including history, clinical exam, CT scan, and Electroencephalogram (EEG).
Perhaps fMRI should be considered as part of the work-up of brain injured patients if they do not show obvious signs of improvement within a year of injury? In some cases, these patients may even be able to answer questions, via fMRI, about whether they are in pain or perhaps even communicate their wishes about life-sustaining treatment. This sounds like a beneficial use of fMRI but must be measured against dollars and cents (a single fMRI scan costs approximately $700) and practicality (currently fMRI units are scarce and located primarily at research centers). The experts I contacted agreed that fMRI is not ready for widespread use in the PVS population. Dr. Geoffrey K. Aguirre, an assistant professor of neurology and an fMRI researcher at the University of Pennsylvania, emphasized, “The gold standard has been, and remains EEG. It does a great job of detecting sleep/wake cycles and distinguishing (for example) coma from locked-in syndrome from something in between. The fMRI work is focused upon the particular question of if you can give prognostic information for recovery from vegetative to minimally conscious state.” Dr. Art Caplan, from the University of Pennsylvania Center for Bioethics, also urged caution: “The real challenge is, as better scanning appears, when do we define it as the standard of care for determining PVS, minimal consciousness and death? I think that day is drawing closer but the cost and practicality are very real concerns.”
What are we to make of this? For me, the lesson is similar to that of the Terri Schiavo case; as uncomfortable as it may be, it is best to think about and communicate your wishes and beliefs about life in a PVS ahead of time. You can do so by preparing an advanced directive (living will) that identifies those people who will be responsible for making medical decisions for you (if you are incapacitated) and spells out specific wishes. For example, my living will says: “under no circumstances do I want to be portrayed on television if I am a coma or vegetative state.” I think this is like knocking on wood – if you take care of it ahead of time, it won’t happen. So, make your wishes clear. Talk about PVS with your family and your doctor now; don’t wait until the horse is out of the barn.
For more information on advanced directives go to: http://ag.ca.gov/consumers/general/adv_hc_dir.htm. For most, the California Probate Code Sample Form will suffice.
The above statement comes from a New England Journal of Medicine (NEJM) editorial by the esteemed neurologist Allan H. Ropper. Dr. Ropper was referring to an accompanying NEJM study of 54 brain injured patients in which four patients thought to be in a persistent vegetative state (PVS) actually demonstrated the ability to control brain activity – in one case enough to answer simple yes or no questions – via the “activation” images on a functional MRI (fMRI). The study follows on the heels of the story of Rom Houben – a 46-year-old Belgian man thought to have been in a PVS for over twenty years. Recently, doctors, with the help of fMRI, diagnosed Houben with locked-in-syndrome – a rare neurologic condition that prevents the brain’s impulses (intentions to act, speak, etc.) from reaching the rest of the body. With Houben’s case and the newly released NEJM study, we have fresh wrinkles in the centuries old debate of where the brain ends and the mind begins. The question of the moment – as posed by Dr. Ropper – is whether fMRI activation, in the absence of other signs of awareness, is evidence of “life” in the brain? And if it is, what does this mean for the estimated 15,000 Americans currently considered to be in a vegetative state?
To address these questions, let’s first make an important distinction. Research shows that that people who have become “vegetative” due to brain trauma have a greater chance of recovering than those who have ended up “vegetative” because their brains were deprived of oxygen (such deprivation is called an “anoxic” event). Current thinking is that patients in the anoxic group (patients like Terri Schiavo) will either improve in the first three months or, sadly, never. The recent NEJM study supports this thinking in that none of the study’s patients who had suffered anoxic brain injury showed any evidence of being able to modulate brain activity. Among the patients who had suffered traumatic brain injury, however, the evidence was clearly much different. While it was previously thought that patients with traumatic brain injury were not likely to improve after the first year post-injury, Rom Houben’s circumstances and the NEJM study seem to call that one-year-deadline into question.
It seems then that we can expect minimal benefit from using fMRI on PVS patients with a history anoxic brain injury. In cases of traumatic brain injury, on the other hand, fMRI may be useful. But we must keep in mind that fMRI has a critical weakness: its results can only be considered definitive if positive .If the result is negative (no evidence of conscious brain activity), the patient might be asleep. This means that a negative fMRI can, at best, be part of an integrated evaluation process – including history, clinical exam, CT scan, and Electroencephalogram (EEG).
Perhaps fMRI should be considered as part of the work-up of brain injured patients if they do not show obvious signs of improvement within a year of injury? In some cases, these patients may even be able to answer questions, via fMRI, about whether they are in pain or perhaps even communicate their wishes about life-sustaining treatment. This sounds like a beneficial use of fMRI but must be measured against dollars and cents (a single fMRI scan costs approximately $700) and practicality (currently fMRI units are scarce and located primarily at research centers). The experts I contacted agreed that fMRI is not ready for widespread use in the PVS population. Dr. Geoffrey K. Aguirre, an assistant professor of neurology and an fMRI researcher at the University of Pennsylvania, emphasized, “The gold standard has been, and remains EEG. It does a great job of detecting sleep/wake cycles and distinguishing (for example) coma from locked-in syndrome from something in between. The fMRI work is focused upon the particular question of if you can give prognostic information for recovery from vegetative to minimally conscious state.” Dr. Art Caplan, from the University of Pennsylvania Center for Bioethics, also urged caution: “The real challenge is, as better scanning appears, when do we define it as the standard of care for determining PVS, minimal consciousness and death? I think that day is drawing closer but the cost and practicality are very real concerns.”
What are we to make of this? For me, the lesson is similar to that of the Terri Schiavo case; as uncomfortable as it may be, it is best to think about and communicate your wishes and beliefs about life in a PVS ahead of time. You can do so by preparing an advanced directive (living will) that identifies those people who will be responsible for making medical decisions for you (if you are incapacitated) and spells out specific wishes. For example, my living will says: “under no circumstances do I want to be portrayed on television if I am a coma or vegetative state.” I think this is like knocking on wood – if you take care of it ahead of time, it won’t happen. So, make your wishes clear. Talk about PVS with your family and your doctor now; don’t wait until the horse is out of the barn.
For more information on advanced directives go to: http://ag.ca.gov/consumers/general/adv_hc_dir.htm. For most, the California Probate Code Sample Form will suffice.
Sunday, February 7, 2010
Vegetative no more? (Marin IJ)
Sometimes you read a story that is too astonishing to believe. “Just imagine. You hear, see, feel and think but no one can see that,” wrote a Belgian man whose mind had been trapped in a paralyzed body for twenty-three years – unable to communicate to his family that he was not a vegetable. The story of Rom Houben, a former engineering student and martial artist paralyzed and comatose after a car crash over two decades ago, leapt into the news last November and, at first, appeared too incredible to be real. You see, the forty-six-year-old Houben had been recently diagnosed with locked-in-syndrome – a rare neurologic condition in which the brain’s impulses (intentions to act, speak, etc.) are blocked from reaching the rest of the body. Here’s what else you need to know about locked-in syndrome; the vast majority of cases are due to a stroke in a very specific area of the brain (the pons) in which damage is usually detected within days to weeks by an MRI scan. These patients usually can still move their eyes and use them to communicate. If you saw the movie The Diving Bell and the Butterfly you are familiar with how this can work.
Thus, several aspects of Houben’s situation made him unique among locked-in patients; he suffered an accident that caused severe, generalized head trauma rather than a stroke with surgically-precise effects; he was not properly diagnosed for over twenty-years; and he uses faint finger movements – rather than eye movements – to guide the hand of a speech therapist to keys on a keyboard. It is this final difference, the use of what is called “facilitated communication,” that triggered a round of media skepticism. That’s because facilitated communication has ample potential for abuse. According to James Randi, a blogger specializing in de-mystification, the facilitated communication process is a “very intimate participatory action...and tests show that it is a complete fraud, farce, and delusion!” Art Caplan, a prominent bioethicist at University of Pennsylvania, is also dubious; “Sadly,” he wrote in a column for msnbc.com, facilitated communication “has been shown time and again to be unreliable. There is something of the ouiji board about the whole thing.” Shortly after this commentary emerged, communication from Houben and his family abruptly ceased – fueling speculation – too incredible to be true?
But wait, before we write off this story as a farce, consider the circumstances of Houben’s diagnosis. Houben was studied by Dr. Steven Laureys of the Coma Science Group at the University of Liege. Laureys’ evaluation was rigorous – quite different, for example, than Senator Bill Frist’s video-based pronouncement, back in 2005, that Terri Schiavo was not in a persistent vegetative state. Dr. Laureys put Houben through a series of tests, including a functional MRI. What the heck, you may ask, is a functional MRI (fMRI for short)? It’s a specialized brain MRI that creates a visual representation of areas of increased oxygen use in the brain – demonstrating, in essence, which parts of the brain are actively thinking or performing. The “functional” piece of the study is usually teased out by having the patient perform a specific task – such as tapping pictures on a screen (much like the iPhone app “Bugs”) – the areas of the brain being used to identify the picture and tap it will then “light up” on the fMRI.
In Houben’s case, the purpose of the fMRI was not to look for activity in specific areas of the brain, but rather to look for evidence of any activity at all. Apparently, and the specifics are murky because Laureys and his team have yet to publish the details, Houben’s brain activated in many areas of the cerebral cortex. This is pretty solid evidence that he is awake and that his brain is working, at least to some degree. It was these fMRI findings, then, that led to the attempt at facilitated communication – and its seemingly miraculous results. Without more details and access, it is impossible to know how much of Houben’s communication is real, but it does seem likely that he is awake. And, it also appears likely that his doctors missed this fact for over twenty years. The implications are potentially immense.
There are an estimated 15,000 patients in this country who have been diagnosed as being in a persistent vegetative state. Small studies have estimated that as many as 40% of such patients may have some minimal brain activity. But, are some of these patients fully awake – fully aware that they are trapped inside a body that doesn’t move? My guess is probably not – that Houben’s case, if real, is extremely unusual. But, nonetheless, there are those who may use the Houben case as justification for never removing life-sustaining support – even in a case like Terri Schiavo’s in which there was clinical (seven neurologists) and radiographic (a CT scan showing a severely atrophied brain) consensus of a persistent vegetative state. In a health system in the fast lane to bankruptcy, how many resources should be spent on sifting through thousands of Terri Schiavo’s to find one Rom Houben? This is not an easy question to answer – but it is one that needs to be addressed. To learn more, lock back in to this column in a couple weeks.
Thus, several aspects of Houben’s situation made him unique among locked-in patients; he suffered an accident that caused severe, generalized head trauma rather than a stroke with surgically-precise effects; he was not properly diagnosed for over twenty-years; and he uses faint finger movements – rather than eye movements – to guide the hand of a speech therapist to keys on a keyboard. It is this final difference, the use of what is called “facilitated communication,” that triggered a round of media skepticism. That’s because facilitated communication has ample potential for abuse. According to James Randi, a blogger specializing in de-mystification, the facilitated communication process is a “very intimate participatory action...and tests show that it is a complete fraud, farce, and delusion!” Art Caplan, a prominent bioethicist at University of Pennsylvania, is also dubious; “Sadly,” he wrote in a column for msnbc.com, facilitated communication “has been shown time and again to be unreliable. There is something of the ouiji board about the whole thing.” Shortly after this commentary emerged, communication from Houben and his family abruptly ceased – fueling speculation – too incredible to be true?
But wait, before we write off this story as a farce, consider the circumstances of Houben’s diagnosis. Houben was studied by Dr. Steven Laureys of the Coma Science Group at the University of Liege. Laureys’ evaluation was rigorous – quite different, for example, than Senator Bill Frist’s video-based pronouncement, back in 2005, that Terri Schiavo was not in a persistent vegetative state. Dr. Laureys put Houben through a series of tests, including a functional MRI. What the heck, you may ask, is a functional MRI (fMRI for short)? It’s a specialized brain MRI that creates a visual representation of areas of increased oxygen use in the brain – demonstrating, in essence, which parts of the brain are actively thinking or performing. The “functional” piece of the study is usually teased out by having the patient perform a specific task – such as tapping pictures on a screen (much like the iPhone app “Bugs”) – the areas of the brain being used to identify the picture and tap it will then “light up” on the fMRI.
In Houben’s case, the purpose of the fMRI was not to look for activity in specific areas of the brain, but rather to look for evidence of any activity at all. Apparently, and the specifics are murky because Laureys and his team have yet to publish the details, Houben’s brain activated in many areas of the cerebral cortex. This is pretty solid evidence that he is awake and that his brain is working, at least to some degree. It was these fMRI findings, then, that led to the attempt at facilitated communication – and its seemingly miraculous results. Without more details and access, it is impossible to know how much of Houben’s communication is real, but it does seem likely that he is awake. And, it also appears likely that his doctors missed this fact for over twenty years. The implications are potentially immense.
There are an estimated 15,000 patients in this country who have been diagnosed as being in a persistent vegetative state. Small studies have estimated that as many as 40% of such patients may have some minimal brain activity. But, are some of these patients fully awake – fully aware that they are trapped inside a body that doesn’t move? My guess is probably not – that Houben’s case, if real, is extremely unusual. But, nonetheless, there are those who may use the Houben case as justification for never removing life-sustaining support – even in a case like Terri Schiavo’s in which there was clinical (seven neurologists) and radiographic (a CT scan showing a severely atrophied brain) consensus of a persistent vegetative state. In a health system in the fast lane to bankruptcy, how many resources should be spent on sifting through thousands of Terri Schiavo’s to find one Rom Houben? This is not an easy question to answer – but it is one that needs to be addressed. To learn more, lock back in to this column in a couple weeks.
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