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Trapped 'coma' man: How was he misdiagnosed?
By Mark Tutton, CNN
November 24, 2009 -- Updated 1651 GMT (0051 HKT)
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23 year coma patient communicates
STORY HIGHLIGHTS
* Man diagnosed as being in vegetative state for 23 years was fully conscious
* Study found that 41 percent of patients in minimally-conscious state were wrongly diagnosed
* Lack of careful assessment can contribute to misdiagnosis
London, England (CNN) -- A Belgian car crash victim who was misdiagnosed as being in a vegetative state for 23 years was conscious the whole time, it has emerged.
For years he listened to the conversations going on around him but he was unable to communicate with his doctors or family.
Rom Houben was 23 at the time of the near-fatal car crash in 1983 that left him paralyzed. Doctors presumed he was in a vegetative state following the accident and they believed he could feel and hear nothing.
Neurologist Dr.Steven Laureys of the University of Liege, in Belgium carried out a brain scan using state-of-the art scanning system and discovered that Houben's brain was fully functional.
In an interview with the UK's ITV news Monday, Rom communicated by typing on a special keyboard attached to his wheelchair, and aided by his carer.
He said: "At some moments it was terribly lonely but I knew my family was believing in me."
"I simply want to enjoy life," he added. "I notice a big difference now I'm back in contact with the world."
Video: Assessing comas
He was conscious for a long time, but it's difficult to know for how long.
--Caroline Schnakers, Coma Science Group
RELATED TOPICS
* Brain Injuries
* Health Care Issues
* Health and Fitness
The case has highlighted the difficulties doctors face when trying to diagnose the level of consciousness of a patient in a coma-like state.
Watch Laureys explain how comas are assessed
A study carried out last year on 103 patients by Laureys and his colleagues at Liege's Coma Science Group found that 41 percent of patients in a Minimally Conscious State (MCS) were misdiagnosed as being in the much more serious Vegetative State (VS).
Dr. Daniel Hanley, professor of neurology at Johns Hopkins Medicine, in Maryland, told CNN that VS is a coma-like state in which patients have a sleep and wake cycle, and can show reflex chewing, swallowing and blinking, but don't respond to language or stimulation.
Patients in MCS occasionally show they are aware of their environment, for example moving to face a doctor when asked, but only infrequently.
Laureys said of his research, "Differentiating the vegetative from the minimally conscious state is often one of the most challenging tasks facing clinicians involved in the care of patients with disorders of consciousness.
"Misdiagnosis can lead to grave consequences, especially in end-of-life decision-making."
Watch one iReporter's reaction to the situation
Caroline Schnakers, who carried out the research with Laureys, told CNN that one probable reason for the high rate of misdiagnosis is that doctors often base their diagnosis on observations of a patient's behavior, rather than assessing patients using standardized tests.
"Assessment is usually behavioral," Schnakers told CNN. "For example, if you come into a room and a patient's eyes follow you, or if they smile when you make a joke, they are conscious -- but it doesn't mean they will still be able to do that one hour later."
Schnakers said that using standardized tests could reduce incidents of misdiagnosis.
The Glasgow Coma Scale is a standardized test that classifies a patient's motor, verbal and eye response on a graded scale. It was widely used until about 2000 to classify a patient's level of consciousness, but Schnakers says it may contribute to misdiagnosis.
She told CNN, "In our study we used the JFK Coma Recovery Scale-Revised (CRS-R), which is standardized for detecting signs of consciousness in someone recovering from a coma. It's very sensitive and avoided a lot more misdiagnosis than the Glasgow Coma Scale."
The CRS-R was developed at the JFK Johnson Rehabilitation Institute and grades patients' verbalization, communication, motor function, visual function and response to sound.
Diagnosis can be further complicated by another condition, called Locked-In Syndrome. Much less common than VS or MCS, patients in a locked-in state are totally aware of their environment but have minimal reflexive movements, typically only being able to blink their eyes. Hanley told CNN that Houben may have been in a locked-in state.
But Houben's diagnosis may have been made more difficult by the fact that he was partly paralyzed, meaning he was unable to show a motor response.
"He was conscious for a long time, but it's difficult to know for how long," said Schnakers. "Maybe he had a period of VS, but you wouldn't know how long it lasted, even if you ask a patient how long they were in VS or MCS."
Hanley explained that diagnosis is also more difficult if a patient is being treated with sedative drugs, which can cause severe neurological impairment that can mimic VS. But even given those considerations, Hanley says neurologists should easily be able to tell the difference between a patient in VS and MCS.
Dr. Nicholas Schiff, of the Weill Cornell Medical Center, in New York, told CNN that the risk of misdiagnosis is increased because a patient's condition can change over a long period and the transition from VS to MS often takes place outside the time window of careful assessment.
"The 'standard' is probably transfer to nursing home from acute care at an early stage, where an accurate diagnosis of VS gets replaced at the nursing home with an inaccurate prognosis of permanent VS, explicitly or implicitly," Schiff said.
"Because there are no standards for reassessment or any access to rehabilitation centers for many of these patients this is the status quo."
CNN's Caleb Hellerman contributed to this story.
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The misdiagnosis of Rom Houben is an example of how the evaluation of the comatose needs to be improved. While it is very difficult to differentiate between the different states of consciousness like Locked-In Syndrome, minimally conscious and vegetative, technology has advanced so that there is not a need for simply either the Glasgow Coma Scale and the JFK Coma Recovery Scale –Revised. Both scales grade the patients verbalization, communication, motor function, visual function and response to sound. These are all behavioral traits that have to be observed at the right time. For someone like Rom who’s consciousness level fluctuated for the past 23 years, it is hard to observe the patient 24 hours a day and observe a response, especially from someone who is paralyzed and has the Locked-In Syndrome. In addition to either of the above mentioned comatose scales, brain scans should be taken to evaluate the consciousness of the comatose. Scans should be taken initially when the patient is diagnosed and taken periodically afterwards incase the patient’s level of consciousness changes. How often depends on the resources available and at the doctor’s discretion.
ReplyDeleteAs pointed out in the article, there are many complicating factors that can in some cases make diagnosing consciousness in a patient who is not fully conscious - whether MCS or VS - very difficult. However, the things that healthcare professionals can control, such as the testing, scanning and evaluation that can be done for the patient to determine level of consciousness, should absolutely be done to the fullest extent possible. Understandably, we may not have had the technology in 1983 when Rom Houben's accident occurred to utilize the "state of the art scanning system" that only recently in 2009 was able to identify that Rom's brain is fully functional. However, now that we have more advanced technologies such as this brain scanning system, doctors and healthcare professionals have a duty to their patients to act beneficently and to use these technologies to the fullest extent to determine the mental capacity/function of their patient.
ReplyDeleteI would also argue that without having the knowledge of whether or not the patient is in a vegetative state, the doctor would not be capable of acting in the best interest of his/her patient. Knowing the state of consciousness of the patient is a large and essential part of information that would be required to make important decisions about treatment and potentially even end of life care assessments. Therefore, the doctor has an obligation to use any and all scans/tests/forms of evaluation deemed appropriate to determine consciousness, as failing to do so would inhibit the doctor from acting beneficently. Failing to determine the patient's level of consciousness when it is potentially possible to do so would also be obstructing the patient's right to autonomy. If the patient's brain is fully functional but the doctor does not seek to determine if that is the case and prematurely assumes the patient to be in a VS, the doctor is not only not acting with beneficence, but is also acting (passively) in a way that robs the patient of his/her autonomy.
I think the misdiagnosis for Rom Houben is one of the saddest medical cases in recent months. It also presents one of the major problems for end-of-life decision making. I agree with the previous post in that more needs to be done to evaluate and reevaluate patients in comatose states. Nevertheless, this raises an interesting question about quality of life and how we determine in end-of-life decision making when the quality of life is so poor that death may be the more ethical choice. While some, such as Rom Houben, are able to communicate through writing, as technology continues to develop and doctors are able to better determine the consciousness of patients, there may be some point where minimal consciousness produces an extremely poor quality of life. What is to be done then? I think that in the future people must seriously consider their end-of-life wishes and work with their doctor to understand what they feel would be the best choice for them if they were to get in an accident or something were to happen that resulted in them being in a minimally conscious state. Overall, the answer is not easy but as medicine continues to progress people will be forced to make more in depth and harder decisions about the importance of the quality of their life in conjunction with their wishes to live or not if they were to be in a comatose state.
ReplyDeleteRon Houban was misdiagnosed by his doctor's to be in a vegetative state. He was however, conscious and aware of everything that was going on around him. The article does not give the full perspective of the case, but it seemed as though a lack of care was a problem. It appeared that Ron was received no beneficence from his care providers. Though they were not doing harm, they certainly weren't providing him with a fair and thorough assessment. it took 23 years for a doctor to perform a scan of Ron's brain and realize that he was responsive. Granted, there have been serious improvements in technologies in the past 20 years, but this should not be an excuse for neglect.
ReplyDeleteCaroline Schnakers provides multiple methods that could have helped the medical team rightfully diagnose Ron. It is also important that the patient is monitored over time. People go through mood changes normally and here it is noted that responsiveness of a patient may also fluctuate. If a patient is not monitored at regular intervals they can be misdiagnosed.
As Lawrence said, this shows that the evaluation of comatose patients needs to be improved. Overall evaluation, as well as the initial diagnosis need to be re-assessed in order for medical professionals to better treat these type of patients. It is essential for the patient's benefit to be diagnosed correctly the first time, especially when end-of-life decisions may be involved.
I agree with Lawrence. In order to make sure that patients are not simply "Locked-In" or have some other type of syndrome that makes them appear unresponsive when they are actually conscious, brain scans should be taken to evaluate the consciousness of the patients. By doing so, doctors will be able to detect and help those individuals who are actually alive mentally and ensure that cases such as Rom Houben do not occur.
ReplyDeleteHowever, one might argue that doing so would cost a lot of resources that can not be afforded for every patient that might be conscious but appear vegetative. It should be up to a doctor's discretion as to how often a scan should be performed if at all. The whole purpose is to maximize util and if the resources could be better allocated towards more definite life saving procedures at lesser cost then it should be done. It may seem horrible to leave an individual alive for a large number of years without the ability to reach out to others; however, it is still important to remember that performing brain scans to detect if an individual is mentally active is very expensive. The opportunity cost of performing a scan may be greater than the positive outcome of the scan itself.
Finally, there is the problem that the consciousness of individuals change and fluctuate as time goes on. This oscillation makes it hard for doctors to pinpoint which patients are actually awake. These problems should be overcome in order to get more definite answers for whether performing periodic scans would be a good idea. And if they are how often should they be performed.
~ Tully Cheng
The article states that there have been many cases similar to that of Rom Houben's. This article should provoke the development in determining VS or MCS, if not the prior cases. Because of the similarities in the symptoms, people who are questionable to be in MCS even when declared as VS, should be checked up in a regular basis. The first question when encountering this article was 'how could have they missed this?' Difficulties and complications in diagnosing a patient should not be a hindrance to regularly treat a patient that may be suffering from MCS when diagnosed as VS or finding a way to successfully differentiate the two. As the article states, they do not know for how long Houben was conscious of his environment. What if he was aware for the whole 23 years? Would that not be considered as suffering? The doctors have the responsibility of putting the man's life on stake in being oblivious of Houben's physical and psychological state. Even in the article, this situation is very dangerous if at all Houben's family were to face end-of-life decision.
ReplyDeleteThis article makes aware the problem of misdiagnosis and lack of adequate follow up care in terms of VS. The patient underwent serious lack of beneficience from his care givers thorugh the fact that they failed to give him a correct diagnosis in the first place and then failed to catch their own mistake by conducting frequent check-ups. I agree with the previously stated ideas that frequent evaluations after the initial diagnosis of VS need to be conducted because change in consciousness does occur, although sometimes not often, those that it does occur for need to be accounted for. However, it does need to be recognized that the cost of performing these evaluation types of tests (brain scans, etc.) would be very high and there is not necessarily a way to pay for them, which remains a major conflicting problem. In this specific case, the mistake of misdiagnosis could have ended very differently; What if the family decided that he would not want to be in a "vegitative state" and end of life decisions needed to be made all while he was still in fact unknowingly conscious? Important decisions regarding the patient cannot be accurately made and decided when the patient is misdiagnosed in the first place, potentially leading to even more problems. This again serves as evidence of a need for frequent follow up evaluations even after the initial diagnosis, not matter how confident the doctor seems to be with that diagnosis. These high technology scanning systems exist to be used to save lives such as Ron, but it seems, through this case, that they are not being used to serve the means in which they are meant.
ReplyDeleteIn this case we see ethics concerning the doctor’s duty to provide care to their patients. Rom Houben was twenty three at the time he went into what doctors believed to be in a vegetative state, when in reality, he was conscious the entire time. With a brain scan, doctors were able to determine Houben’s brain had been fully functional. If doctors have a duty to provide care to their patients, why did it take 23 years to determine Houben was not in a vegetative state? Houben has a right to live a meaningful life, and this right was violated by the lack of care he received from his doctors. Doctors also take the Hippocratic Oath, to do no harm, and it can be considered that 23 years trapped without a way of communication caused Houben some type of harm.
ReplyDeleteFrom an opposing view, we must consider the expense factor. The article states it is possible that Houben, and other similar patients slip in and out of consciousness and it can be difficult to monitor all day every day, making it easy to misdiagnose, and extremely expensive to monitor. The availability of resources influences testing, in Houben’s case a brain scan, which influences the doctor’s ability to provide care, and the patient’s overall quality of life.
This case makes me realize the severity of misdiagnoses in medicine, and I have to wonder about other similar cases. How many people have been taken off life support because they were apparently in a vegetative state, but in reality fully aware but unable to speak. move, or show any signs of life?
ReplyDeleteI would assume that mistakes like this occur less frequently as technology improves over time, so hopefully the scanning systems used today are more effective at detecting signs of life than the one originally used for the man in this situation.
Reading about this case would make anyone reconsider what they would do in a similar situation, if a family member or loved one were in what appeared to be a vegetative state. How could you be sure that they actually had absolutely no brain function? Even if current brain scanning devices detected no activity, how can one be completely certain that brain function has ceased indefinitely? If a misinterpretation of test results or a misdiagnosis could result in the death of a person who actually does have a significant amount of brain activity, it seems like an extremely risky decision to withdraw life support.
Sarah made an important observation regarding the expenses of testing and monitoring brain activity. It would be impossible to keep every person on life support indefinitely, and especially difficult when considering the daily variability in consciousness.
An overwhelming 41% of patients are misdiagnosed as being in a vegetative state when really they are fully functioning. That statistic is both startling and eye opening. Under the Hippocratic Oath, Doctors have a binding code with their patients and their profession to "do no harm." However, given what we know, that 41% of pts. are misdiagnosed, what we don't know is then how many pts. of the 40% are taken off life support and essentially killed. Once must consider both the consequentialist view that forces us to looks at the ethics of the outcome of our decision making, as well as the theory of deontology that emphasizes our need to carry out duties we have to one another that are right. It is the Drs duty to perform standard tests that are efficient, right from the beginning, to ensure that people like Rob Houben are not left to suffer for 23 years.. I am sure the cost of giving him the brain scan was a less costly venture than keeping him in the hospital for 23 years.
ReplyDeleteSince cost is a big part of end of life decision making, here we have the right thing to do most likely having a high cost benefit than doing nothing to help him. It is unethical to kill patients simply on the basis of not giving someone the correct tests that will determine a level of brain functioning because it goes against the theories of rights and justice that give everyone a fair chance to life. -A. Pitkin
Following up on what Alexandra said, it was extremely shocking that almost 41% of patients are misdiagnosed as being is vegetative state. That is almost half of the patients treated for this! There is no excuse for the percentage to be that high.
ReplyDeleteIn this case, if Rom's brain had been tested more recently with the improved medical innovations, the doctor's could have detected earlier that there was significant brain activity. However, by reading this article it is not clear exactly why the doctors had not followed through with the brain scans capable of detecting this. It is true that it seems this test could have lessened the costs of the medical bill that was acquired for the 23 years he was in a 'coma'. Since he was in the hospital for 23 years, was there some sort of hope or progress he made during his stay that allowed him to be 'kept alive' for 23 years? It does make you question how many of these patients' families has to make end of life decisions based on the alarming rate of misdiagnoses.
On the flip side, it has been said that patients can slip in and out of consciousness and the sedative drugs can alter their being making it seem as though they are in a vegetative state, but it still comes done to the mere factor that this went on for 23 years. It seems hard so hard to believe that Rom's doctors could overlooked this. Could his hospital have been receiving a good pay for his stay, meaning a grave conflict of interest for his physicians?
The fact that Rom Houben was determined to be fully conscious simply by the use of a brain scan, a technology that has been available since the early 90s (though perhaps not as advanced as it is today), is unacceptable. So much of the available funds in the world are invested into research, studies, technology, etc many of which are geared towards promoting good health and supporting high quality of life that it seems almost silly that some people (in situations similar to Rom’s) are still not spared the sufferings/pain because the necessary technology were not used at the right time. I believe that any available equipment that can possibly determine whether someone is truly in a vegetative state should be used as needed regardless of price for the same reason Alex had mentioned. There should be no reason for why the resources are not all used. Discovering only recently, that someone who was long ago deemed to be in a “coma-like state” and had actually been conscious for a long time, is inexcusable. Medical professionals have a duty to do no harm to their patients, but by misdiagnosing a patient, I believe that harm to some extent is done. Obviously in this particular case, we do not know if Rom could have lived the past 23 years any different, but we do know that he did not enjoy his life (as implied by his quote). While Rom might have very well been in a coma-like state at the time of his accident, there were evidently inadequate follow-ups, which if properly done could have altered this tragic outcome. So agreeing with the other students who suggest that continuous evaluation needs to be performed, I believe that it is essential that the methods of follow-ups and diagnoses also be improved.
ReplyDeleteThe case of Rom Houben is extremely sad and adds another layer of controversy towards end of life issues. What I think hasn't been addressed yet is the responsibility of the doctors to continue to critically evaluate a patient who has been in a VS or MCS state. While it may seem on the more redundant side to to continue scanning a patient at regular intervals instead of a quick behavioral asssessment, it is the scans that will show the slightest changes, either for the best or for the worst. These accuracy of these scans over the doctors minimal behavioral assessment can make end of life decision making easier. Family members who continue to see improvement in scans may be more inclined to continue care, while a continual non-improvement/state of getting worse may prompt doctors and family members to end or shorten care. Without an advance directive, scans give the patient at least the chance of one day being able to communicate their wishes, such as Rom Houben with the computer technology. Just because these patients are nonresponsive does not mean they don't deserve the right to a chance at life should they still choose to live it in an incapacitated state. Scans at regular intervals would make great strides in helping patients secure this chance.
ReplyDelete-Kathryn Roberts