Module 2: Portraying Patients

2.4 Moving images

One of the key differences between short coma and the vegetative state is that vegetative patients open their eyes and have what are called ‘sleep-wake’ cycles. They may also make facial expressions and may sometimes move their head or limbs.

Eye-opening is often used in the media as a sign of a patient becoming conscious, and if a patient cries, smiles or turns their head a common-sense interpretation is that they must be aware. However, all these signs are compatible with a vegetative diagnosis.

Interpreting any behaviours can be a complex process and families may be encouraged by clinical team to film such moments to support discussion and assessment of their relative’s condition. There are also systematic ways of testing patients in order to contextualise and make sense of what such behaviours mean.

The family members that we interviewed often talked about the hope they felt when they first witnessed such things, but over time, with no further changes, and when they could see these behaviours occurred rather randomly, most eventually came to accept the clinical diagnosis. But they were sometimes left with questions. Might clinicians be wrong? Is there more to consciousness than is understood by current science?

Listen to one man describe visiting his brother in a vegetative state.

Many families, and staff, often treat vegetative state patients as if they might be aware. This is partly to allow for even the slightest possibility that there is any momentary or fragmented awareness, and partly because it can seem the only dignified way of treating a warm, living body or respecting the individual’s ‘personhood’.

Video clips of  patients appearing to respond can become generate intense interest. One famous patient who’s case attracted considerable interest is Saudi Arabia’s Prince Al-Waleed bin Khalid Al-Saud. He was  injured in  a car crash in 2005. After many years of unconsciousness he became known as ‘the sleeping prince’. When video was shared  of him moving this went viral with many people interpreting this as meaning there was some sign of recovery.

Clips were shared widely on social media and also prompted headline coverage. In 2019 a clip of him turning his head caused intense public interest. You can  the clips of the head turn in the article here. 

 

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Khalee Times

This happened again in 2020 in response to a clip of the prince moving his hand.

The video clip that was made public can be viewed here.

 

Such images can also become very politicised when families are in conflict with doctors, or one another, about whether or not a patient is conscious or what the right way forward is for their treatment. Videos can be released into the public domain as ammunition in such disputes via the mass media (and also, now, via platforms such as Youtube). This is what happened in the Terri Schiavo case, when her parents provided video clips to be shown on TV news. (Some of the clips are available here: https://terrischiavo.org/story/video/

They wanted to demonstrate that their daughter was conscious, and some journalists, and members of the viewing public, took the clips at face value. The video clips appeared to show her smiling at her mother or her eyes following a balloon (Walker, 2006; Walman, 2006). In addition, analysis of newspaper reports about Schiavo found that one quarter of the reports held out the possibility that she might improve or recover (Racine et al., 2008). However, everything shown on the videos was compatible with the permanent vegetative state. There was no inconsistency between what the videos showed (as opposed to how they were interpreted) and her formal clinical diagnosis.  Information revealed at her post-mortem also showed that she had cortical blindness – loss of vision caused by damage to the brain’s occipital cortex.

Terri Schiavo’s brother, Bobby Schindler, continues to be a strong campaigner for the ‘right to life’. He has been involved recently in supporting parents in the UK fighting for continued treatment for their young children such as Charlie Guard.  (See an example here: https://www.lbc.co.uk/radio/presenters/ian-payne/killing-is-not-the-answer-says-brother-of-uss-char/)

You can hear him give his account of what happened to his sister on the website https://terrischiavo.org which ‘serves as a tribute to Terri’s memory and a resource for those looking to understand what her life was like, what happened to her, and why we should remember.’ Some of the original videos are available there too.

A similar dispute erupted around the care of Vincent Lambert – again there was a dispute between his spouse and his parents, and again the release of video of him created a huge media stir.

Journalists can sometimes fail to understand, or to convey, the nature of the vegetative condition and this can lead to misleading messages being presented to the public (and to family members).

Engaging with the clinical literature on vegetative patients and how they may appear is important before making judgments on the basis of assumptions.

Formal film analysis can also be a particularly powerful here, and there are some fascinating studies about the careful selection of home video clips and how they are used on TV news. See below, for reference to a couple of very pertinent articles.

Activity 1  – revisit your drawing

Look back at the drawing of a vegetative patient you sketched at the start of the course. Does the person have their eyes open or closed? Are they lying down or sat up in a chair? Are they alone or with other people, such as staff or family and friends. If you included any family or friends are there efforts to engage the patient in any way (reading a book to them, leaning over to try to make eye contact?). What imaginations about the vegetative state are captured in your drawing?

Now click on the two rows below if you want to see additional activities that might be pursued (when this is done as part of a formal University degree programme) or move on to the next unit

Activity 2 - additional option: Engage with formal film analysis of family videos released into the public domaine. (Click here for further details)

(Estimated time 2 hrs)

This exercise is for students interested in visual or film analysis and involves two or three parts.

  1. Read the following two articles from the film journal, JumpCut:
  • Walker, J (2006) ‘The video-graphic persistence of Terri Schiavo’– https://www.ejumpcut.org/archive/jc48.2006/SchaivoWalker/index.html
  • Waldman, D (2006) ‘Schiavo videos, context and reception: timely triage’. https://www.ejumpcut.org/archive/jc48.2006/SchiavoWaldman/index.ht

You also might want to read Cranford, R (2005) ‘Facts, Lies, and Videotapes: The Permanent Vegetative State and the Sad Case of Terri Schiavo’. Full references and links are in the penultimate module of this course (in “Resources”).

2. Listen to a series of short clips from the “Meet-the-Author” interview Jenny Kitzinger conducted with Diane Waldman. In the first clip  she explains how she became interested in the Terri Schiavo videos.

 

In the next clips Diane Waldman talks about the theoretical and methodological approach.

You can also listen to Diane Waldman summaries what she sees as the key messages, some of the complexities in this case, and how she looks back on what she wrote from the  perspective of fifteen years on.

 

3. Now, produce a written piece based on your learning

(a) Write a comparative summary of the Waldman and Walker pieces

OR

(b) Look at any of the other authors in this special issue of Jump Cut and set up a “Meet the Author” recorded interview to add to this resource (Discuss this with your supervisor first).

OR

(c) write up an analysis of a 10 minute video  of a patient with a Prolonged Disorder of Consciousness (see below).

If you opt to do exercise (b) then you can use the 10 minute video  below. This video is used to encourage families from all over the world to take up treatment in China for loved one’s in vegetative or minimally conscious states.  The purpose od the video is to demonstrate the alleged benefits of the treatment offered.

Address all the other questions raised by Diane Waldman such as – who has produced this video, what is the role of the family members? How is talk used during the video? How might the ‘preferred’ reading differ from some people’s actual readings?

Take care when viewing this video (or showing it to anyone else)  as some people find it a very difficult watch and are concerned about the ethics around this. If you would rather not view this video select an alternative exercise such as (a) or (b) above or trying to do this exercise analysing a fictional representation rather than a real one. (See the next alternative activity)

 

Hint: Formal analysis of camera angles, cuts, speech etc is important. However, don’t just look at the video in isolation. Do read the text provided beneath it and see what you can find out about the organisation involved. Here the patient is described as having been ‘minimally conscious’ for several yea. Note that some patients with a minimally conscious diagnosis later move back/forward into the vegetative state so the diagnosis identified here may or may not be accurate.

Activity 3 - additional option, write a review an episode of a TV series (Click here for further details)

(Estimated time: 2 hrs) 

Watch the Series 2 Episode 12 of the medical drama series, New Amsterdam. Write a review drawing on your media analysis skills combined with the additional learning from this course. Questions to start you off might include:
  • What is the significance of the title of this episode: “14 Years, 2 Months, 8 Days”
  • How is eye-opening and the sounds the patient makes explained?
  • How is this similar to, or different from, how these are represented in other TV dramas or films?
  • What evidence is there of efforts to be informed by medical expertise about the vegetative state and to attempt realism?
  • What part in the narrative is played by different characters and how is dialogue used?
  • What image is promoted of doctors and other people involved in caring for the patient?
  • How does the representation of the permanent vegetative state shown in this episode fit with the genre and approach of New Amsterdam as a series?