Module 3: Representing Diagnosis and Prognosis

3.3 Reporting recovery

In the previous unit we explored ‘imagined awakenings’ in movies and soap opera. Such scenarios also capture the imagination of news journalists and of media consumers. There are several well-documented examples of unexpected changes in patient’s conditions long after any such change could have been predicted. These cases attract international headlines and circulate repeatedly on social media. Terry Wallis is one particularly famous and well documented case. After being mute and in a minimally conscious state for 19 years he began to be able to talk. His case features in “The Man Who Slept for 19 years”. An update  on his condition was presented in 2014 and you can read a moving account from his family here: https://arkansaslife.com/reconnecting-terry/

Such cases can be a beacon of hope for families who believe their relative would have wanted to hold on for even the most remote chance of some level of recovery. Media representation of changes (even after a very long time) challenge the idea that patients inevitably ‘plateau’ in their recovery and encourage families to fight for ongoing access to stimulation and rehabilitation. Such accounts are also important to healthcare professionals devoted to enabling the best possible level of recovery for the patients they care for.

It can be very important to present a realistic and/or ‘positive’ idea of what recovery from  a vegetative state (for a short time) or minimally conscious state (even after a longer time) can look like. This is  well represented by one of the key support groups for families facing serious brain injury: ‘BIG’ – you can see a moving video about their work here. Their promotion video includes film of some of their relatives who did recover full consciousness – note Stewart’s mother talking about how they can have laughter together and how her son has a sense of humour. Keeping hope, but being realistic, is key to messages from organisations such as BIG.

Alongside understanding cases such as Terry Wallis (after a long time in MCS) or Steward (whose recovery trajectory over the first year after injury is much more typical)  it is important to be sceptical of some accounts in the media. Sometimes the media misrepresents the level or likelihood of recovery, and families may feel they have been tricked into holding on to ‘false hope’ by a chimera promoted by the media.

If a celebrity is injured there may be an initial flurry of interest in any sign of recovery – with a move ‘off a ventilator’ or  ‘out of a coma’  or ‘going home’ all being interpreted as some sign of significant progress. Such moves may however simply indicate that the patient is becoming increasingly physiologically stable, but no progress is being made neurologically. People who remain in long term disorders of consciousness (or recover but with remaining profound neurological problems) often disappear from sight but reporting may have left anyone reading the newspapers with the impression that they ‘woke up’.

Watch the clip below to hear Cathy describe how she and her parents related to such stories when her own brother was left in a vegetative state after being hit by a car. She also talks about how a local paper falsely implied that her brother was regaining consciousness. He, in fact, eventually died after many years in a vegetative state.

Alongside such false reports there are, however,  reports of genuinely unexpected recoveries (depending on how you define ‘recovery’), and these may become a media sensation, especially if they have a dramatic personal angle and human interest story behind them. Such accounts may need careful writing or reading to avoid audiences being left with an exaggerated sense of what happened however.

Activity 1 (Estimated time 20 mins)

You may remember news coverage of a case in 2019 about a woman from the United Arab Emirates.

a) Read one of the original reports about this case: “Mother wakes up from 27-year coma”

b) Then read this blog: “Can you wake up after decades in a coma?”

c) Then consider the following questions

  •  Is there anything you could take from this blog that might be useful for next time you see a media report about an unexpected recovery?
  • If you are a journalist how does the information in the blog impact on how you might investigate or write up a story like this in the future?
  • If you are a healthcare professional, is there anything you can take from the blog that would be useful in your conversations with families?
  • What may be the policy implications for ensuring the right level of support for patients given what might have happened in this case?
Activity 2

Please add comments about the blog to the form below and skim to see what others have written and respond if you wish. You can also post questions here too – for other students (or for the course tutor if you are working with one).

Activity 3, optional. Reflect on one family's account of recovery to full consciousness

When a patient recovers consciousness and ‘goes home’ that is often the end of the story for media coverage and sometimes for the professional team involved in rehabilitation and assessment.  Listen to one family describing their experience of fighting for treatment for their loved one and their pride in how he ‘proved the doctors wrong’ in emerging from his unconscious state and making some progress.

Watch the half dozen or so short clips from the interview with the brothers and sister-in-law of the injured individual here

https://www.healthtalk.org/family-experiences-vegetative-and-minimally-conscious-states/peter-olga-andrew

Write a reflective pice (300 words) on what you learned from listening to these extracts from the interview and how it is different from, or similar to, media accounts.