Module 3: Representing Diagnosis and Prognosis
3.4 Representing misdiagnosis
It is fairly common for patient to be placed in long term care homes without regular expert review. Patients who transition over time from vegetative to minimally conscious may not get a rediagnosis, and sometimes family observations that the patient is occasionally responsive may be dismissed by doctors as wishful thinking. Review of patients’ states is crucial to ensure the best possible care. Funding for skilled and regular reassessment and review is key – yet this is often a battle to obtain.
This crucial issue however, doesn’t attract many headlines. Instead, the stories that tend to appear in the media imply much more dramatic incidents of misdiagnosis, and often focus on individual high profile accounts of patient who are ‘all there’. The invitation is to imagine them ‘ just like us’ but a prisoner in their bodies. Of course misdiagnosis in any form needs to be exposed and rooted out, and there are some important well-documented case histories of, for example, patients at first being assumed to be vegetative when in fact they were locked-in. The media accounts of such experiences are vital to raise awareness and help improve clinical practice and provision. At the same time it is also clear that false stories can be promulgated.
The case of Rom Houben
One very famous story is that of Rom Houben, a Belgium man pictured here in the Guardian newspaper. He was reported to have been misdiagnosed for over two decades, having been injured back in the 1980s. It was reported that it “took an expert using a specialist brain scan that wasn’t available in the 1980s to realise what was going on”. He was discovered to be conscious and supported to tell his own story via ‘facilitated communication’. In the picture from the Guardian here you can show his hand is supported as his hand to pick out letters on a keyboard – and you can see ‘facilitated communication’ technique in action in a video from Associated Press here
The Guardian headline read: ‘Trapped in his own body for 23 years – the coma victim who screamed unheard’. The subheading declared that he had a ‘fully functioning brain’ and linked his case to a whole series of other ‘falsely diagnosed coma cases’. The article quoted him at length:
“I screamed, but there was nothing to hear,” he said, via his keyboard…. The moment it was discovered he was not in a vegetative state, said Houben, was like being born again.”I’ll never forget the day that they discovered me,” he said. “It was my second birth”. Houben hopes to write a book detailing his trauma and his “rebirth” (Guardian 23rd November 2009)
Had your heard of cases like this? How does reading the words make you feel? Note your reaction for yourself or add a comment to the comments section.
His case attracted headlines across the world. What attracted less attention, however, was the eventually discovery in 2010 that his words were not his at all, but were a creation of the imagination of the person moving his hand for him. He was not ‘locked in’ as some suggested, his rediagnosis was simply that he was identified as being in a minimally conscious rather than completely vegetative state. The original story remains in multiple forms on the web, without correction, and the fantasies about his case still circulate, feeding into a widespread cultural dread of being buried alive, trapped in our own bodies.
Activity 2 (Estimated time 30mins)
Read the original Guardian article about the case here
Read a short discussion of the flaws in facilitated communication in the Skeptical Inquirer here
Read Newsweek report on ‘how the media distorted’ this story here
Now have another look at the original article in the Guardian about the case. Armed with this new information how could you critique the Guardian’s account? Do you believe the original information you read? Do you believe the Skeptical Inquirer and Newsweek accounts? What might make you trust one account more than another?
Statistics about misdiagnosis:
Around 40% of patients in prolonged disorders of consciousness are said to be misdiagnosed – an important and shocking figure, In the context of stories such as that of Ron Houben (or linking to stories about patients who are locked -in) media reiteration of this assertions can be quite misleading. Attention to misdiagnosis is important and is often used as a call to action for better diagnosis or for investment in science such as novel approaches to ‘brain scanning’. However, such statistics can sometimes create a false impression about the problem of misdiagnosis. For example:
- The shift of a patient from one state to another along the continuum coma-vegetative-minimally conscious does not necessarily mean they have been misdiagnosed at the time they were first assessed, it may mean that a diagnosis correct at one point in time needed to be updated as time passed and the patient’s condition changed.
- It may be that most misdiagnosis may be about the border between vegetative and minimally conscious, and that this would have become clear over time, especially if attention were paid to families’ observations combined with access to formal testing.
Accurate reporting about the problem of misdiagnosis is key to avoid misrepresenting the legal and ethical issues and the policy implications. The way in which a figure such as “40% misdiagnosis” is framed helps determine how we see the problem and understand where the solution lies. For example, depending on how you unpack and ‘frame’ the ‘40% misdiagnosis’ figure may influence whether you think the answer should focus mostly on better care, rehabilitation and regular bedside reviews (eg every six months or a year even after many years of unconsciousness) or whether you put the emphasis on investing in neuro-technological research such as sophisticated brain scanning. The high-tech interventions often attract more headlines and appear to offer a ‘magic wand’, but the daily skilled care and expert assessment may actually be just as important (but less ‘sexy’ for journalists to report).
The concept of framing
We’ve used the term ‘framing’ several times in this course so far. This concept is very popular in sociology and media studies. It refers to the fact the images, ideas and facts are not just presented neutrally. They are selected and contextualised to be ‘framed’ in certain ways to promote certain ways of understanding over others. Goffman came up with the idea of ‘frame analysis’ in the 1970s to highlight how people interpret what they see through a pre-existing frame. The idea has evolved within media studies by theorists such as Iyengar who examined how different frames shaped ideas about the causes of a problem, and the solutions.
The concept of ‘agenda-setting’
Another key concept relevant to understanding the role of the media is ‘agenda setting’; this refers to the ability of the media to ‘set the agenda’ and promote what the public and policy makers talk about and pay attention to. You’ll encounter this concept again in a later module looking at how landmark court cases put ‘right-to-die’ debates on the public agenda and prompted legislative changes.
Activity 3, optional, further reading & doing your own analysis of press coverage
(Estimated time, 6 hrs)
Have a look at clinical case studies of patients who have been misdiagnosed – find these by looking in Google Scholar using search terms such as ‘vegetative” + ‘misdiagnosis’ or ‘unexpected recovery’
- van Erp, W.S., Aben, A.M.L., Lavrijsen, J.C.M. et al. Unexpected emergence from the vegetative state: delayed discovery rather than late recovery of consciousness. J Neurol266, 3144–3149 (2019). https://doi.org/10.1007/s00415-019-09542-3
- Wade D (2018) “How often is the diagnosis of the permanent vegetative state incorrect? A review of the evidence”, European Journal of Neurology. 2018;25(4):619-625. doi:10.1111/ene.13572
Address the following questions
- How is the misdiagnosis representing in the articles you found, do you think they are accurately conveyed? Can you find any other information about the cases discussed
- Is there evidence of some types of misdiagnosis being common and what are the proposals for addressing this issue?
- When journalists repeatedly give prominence to stories of individual cases of genuine misdiagnosis is this ‘over-representation’ or are they fulfilling a crucial role when they ensure these accounts gain publicity?
- Is it potentially ‘misleading” to say 40% of patients are misdiagnosed – what caveats, if any, would you suggest when this statistic is used?