Reporting consciousness in coma: media framing of neuro-scientific research, hope, and the response of families with relatives in vegetative and minimally conscious states

Abstract

This paper examines the public representation of, and family responses to, scientific studies into consciousness in coma-like states. We examine the publicity surrounding high-profile studies using functional Magnetic Resonance Imaging (fMRI) on ‘vegetative’ or ‘minimally conscious’ patients and compare this with family views. Our findings show how, with a few notable exceptions, the research was presented as an amazing breakthrough offering a potential ‘voice’ and choice for patients and hope and comfort for their families. We argue that such representations ignored key limitations, evoked unrealistic visions of recovery, and promoted very narrow representations of family reactions. The comparison between public representations of the science and responses from families with experience of this issue highlights the complex social/medical world into which neurotechnologies intervene, and points to the absence of a range of patient/family perspectives in public discourse. We conclude with suggestions for how those promoting the research, and the journalists reporting its implications, could act to ensure more responsible coverage and enhance public debate.

Responsible Reporting: Neuroimaging News in the Age of Responsible Research and Innovation

“…A study by Peters et al (2008) underlines the need for the inclusion of non-science and non-media actors, as there is the potential for “too much control by the scientific community of media coverage about it, as well as that for too much media influence on inner-scientific processes”, thereby positioning science-media interactions in a too positive light. The promotion of multi-directional communication between actors from science, social science, media, the public as well as other stakeholders has also consistently been advocated by others to avoid a misunderstanding of neuroscience, as well as an enhancement of scientific literacy (Illes et al 2010; Racine et al 2005; Samuel and Kitzinger 2013). …”

UK science press officers, professional vision and the generation of expectations

“…The news article, which was published in the UK Mirror newspaper, was selected because of its sensationalist headline, large ‘visual’ section with pictures of brain scans, and main article which reported the study using mobilizations of hope, excitement and expectation. As part of a larger qualitative study which has been reported in Samuel and Kitzinger (2013), these same news items were presented to relatives of individuals with a severe brain injury in a series of interviews. We draw on some of the findings from these interviews to act as a comparison with the SPO interviews.…”

“…The study received wide media coverage, and scholars noted that the press release and news article presented optimistic portrayals using the language of ‘breakthrough’, with a focus on the benefits (Samuel and Kitzinger, 2013) (see Figure 1). Furthermore, during interviews conducted with individuals who have a relative with a severe brain injury, some interviewees also viewed the news article as overly optimistic: ‘ cause this [the fMRI news article] makes you think that you’re going to speak to them [severely brain-injured relative] through this magic machine ’ (interviewee) (Samuel and Kitzinger, 2013). In contrast, our SPO interviewees generally viewed the fMRI newspaper item as well written: ‘ I think this is quite good ’ (PO 10 media centre); and ‘ it does have caveats in there … saying it is early stages … I would have [been] happy with that one ’ (PO 4 research council).…”

Interpreting chronic disorders of consciousness: medical science and family experience

“…Some relatives of patients in VS and MCS express a certain ambivalence towards behavioural tools and brain imagining techniques [14] . The results of behavioural observations and imaging techniques are questioned, but along a number of different parameters.…”