Telling stories of people who remain unconscious for a long period of time, for instance, victims of tragic accidents, can be a right minefield. There is much confusion around different states of consciousness and the correct vocabulary. Without a proper understanding of the topic, the media coverage can cause more harm than good.
One notorious example is the story of Terri Schiavo, a severely brain-damaged Florida woman, who had been kept alive by a feeding tube after collapsing from full cardiac arrest, while her family argued about her destiny for 15 years. Another story that brought more confusion than clarity was that of the Formula One champion Michael Schumacher who was critically injured in a 2013 skiing accident.
The main problem is the lack of understanding of coma and other medical conditions that derive from it, such as the minimally conscious state and the vegetative state. This, combined with the pressures of a newsroom may result in us spreading misinformation.
In an attempt to improve the standards of reporting on the issue, the new 'Culture, 'Coma' and the Media' online course was developed by Jenny Kitzinger, a professor at the School of Journalism, Media and Cultural Studies at Cardiff University, through the Coma and Disorders of Consciousness research centre (@CDOCuk).
So how to distinguish between the prolonged disorders of consciousness which cover coma, vegetative and minimally conscious states?
Coma & co.
Coma usually lasts no more than a few days or weeks and people can regain full consciousness with little damage when they wake up.
The vegetative state is a completely different situation. It occurs when a person has been unconscious for at least a few weeks because of a serious brain injury. People in the vegetative state are completely unaware of themselves or their environment but able to breathe on their own. However, if they do not regain their full or partial consciousness even after being in a vegetative state for a long time, then their condition will become permanent.
This differs from the minimally conscious state where people show some degree of awareness of themselves or their environment. For example, while a person in a vegetative state might smile spontaneously, a minimally conscious person might smile in response to her daughter entering the room. When people are minimally conscious, their behaviour will vary: they can sometimes briefly follow simple commands but not always, as their consciousness fluctuates.
The vegetative and minimally conscious states may look similar but identifying them correctly in our stories is important to produce accurate and trustworthy journalism.
The media is often blamed for getting the facts wrong but sometimes the reality is more complicated. In 2009, The Guardian published an article about Rom Houben, a man who suffered a near-fatal car accident in 1983. His doctors presumed he was in a vegetative state until a neurologist discovered that he actually had some consciousness. Media reporting suggested Houben was fully conscious during the whole time, "trapped in his own body for 23 years", and that he was even planning to write a book about his experience. A few months later, this story was debunked as it emerged Houben was not able to communicate.
Not only are we always short on time when crafting an article, but the need for catchy headlines and plain language can sometimes put us on the wrong path. However, in the case of Houben, the initial media coverage was accurate as it was based on the information presented to journalists, and it only later turned out his case was misunderstood.
"The phrase ‘prolonged disorders of consciousness’, which is the umbrella term, is a bit of a mouthful as is 'minimally conscious state', says Kitzinger.
"I can understand why headlines just talk about people being in comas. It’s unfortunate though as that reinforces and perpetuates misunderstandings."
Get the skill
More time spent researching and better media training are the ingredients to better reporting on coma and other states.
"The key point for journalists is to get the terminology right, be sure that you understand the differences and understand how important time is in this. If someone has been in an unconscious state for a long time the outcome is very limited."
If you would like to learn more about reporting coma and the vegetative state, click here.