Background Debates and controversies have shaped the understanding and the practices related to death determined by neurological criterion (DNC). Confusion about DNC in the public domain could undermine this notion. This confusion could further jeopardise confidence in rigorous death determination procedures, and raise questions about the integrity, sustainability, and legitimacy of modern organ donation practices.
Objective We examined the depictions of ‘brain death’ in major American and Canadian print media to gain insights into possible common sources of confusion about DNC and the relationship between expert and lay views on this crucial concept.
Methods We gathered 940 articles, available in electronic databases, published between 2005 and 2009 from high-circulation Canadian and American newspapers containing keywords ‘brain dead’ or ‘brain death’. Articles were systematically examined for content (eg, definitions of brain death and criteria for determination of death) using the NVivo 8 software.
Results Our results showed problematic aspects in American and Canadian media, with some salient differences. DNC was used colloquially in 39% (N=366) of the articles and its medical meaning infrequently defined (2.7%; N=14 in the USA and 3.6%; N=15 in Canada). The neurological criterion for determination of death was mentioned in less than 10% of the articles, and life support in about 20% of the articles. Organ donation issues related to DNC were raised more often in Canadian articles than in American articles (33.5% vs 21.2%; p<0.0001).
Interpretation Further discussion is needed to develop innovative strategies to bridge media representations of DNC with experts’ views in connection with organ donation practices.
- Definition/Determination of Death
- Journalism/Mass media
- Clinical Ethics
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Debates and controversies are inextricable from the evolution of the understanding and the practices related to death determined by neurological criterion (DNC,i commonly known as ‘brain death’).1 ,2 Historically and even more recently, the concept of DNC has brought criticism that it merely represents a convenient ‘redefinition’ of death solely for the purposes of transplant medicine.3–5 Other debates have addressed whether or not DNC constitutes the genuine death of an individual and also whether or not the cessation of all brain functions is required to declare DNC.2 ,6 ,7 Some critiques have underscored the confusion about DNC in the public domain and, even in some medical specialists, which they interpret as undermining DNC.8 ,9 Public debates and media coverage on DNC could jeopardise confidence in rigorous death determination procedures and organ donation practices.10 ,11 However, little is known about public understanding of DNC and in particular, about the information communicated to the public about DNC.12 ,13 Through examination of depictions of ‘brain death’ in major American and Canadian print media, we hope to shed some light on (1) possible common sources of public confusion about DNC and (2) better define the relationship between expert and lay views of death.
We gathered a consecutive sample of American and Canadian print media articles containing the keyword ‘brain dead’ or ‘brain death’ (with French equivalents for the Canadian sample) in headlines, lead paragraphs and body of text to maximise search yields. We sampled articles published between 2005 and 2009 from the five newspapers with the highest circulation data for each country14 and which were available in electronic databases (Eureka and Factiva). We excluded three newspapers from this preliminary list. Past issues for one of them (Le Journal de Montréal) were not available in the databases, distribution was irregular for another one (Toronto Sun) and finally, one was excluded because a preliminary search with keywords did not yield any results despite repeated attempts (LA Times). An excluded newspaper was replaced by the next most circulated one.
The final newspaper sample is shown in figure 1. We excluded duplicates, keeping the article containing the greatest word count in the case of multiple versions. Articles were excluded, if they had keywords in a photo description, a legend and a correction or if they contained keywords separated by punctuation (eg, ‘…of the brain. Death occurred a few hours later’). Based on a similar work,15 we developed a coding guide to support the systematic analysis of all media articles. The coding guide was built through an iterative process of preliminary coding of sample materials, discussion for further refinement and re-application of the enriched coding guide until all relevant issues were captured. In this process, each code was defined and boundaries of the codes established supplemented with the coding notes and instructions. A prior review of peer literature on DNC (PubMed and Google Scholar) also informed the development of the coding guide to identify key areas of debate and contention.16 The final version of the coding guide was used to analyse the content of the headlines and the body of texts (see online supplementary figure). Headlines were analysed to capture whether they contained the term ‘brain death’ or an equivalent, and whether they discussed other healthcare issues (eg, organ donation, end of life). Article body content was analysed to determine whether the term ‘brain death’ was used colloquially (eg, in the context of discussing politics, arts and entertainment) or in a proper medical sense. The latter articles were separated between those featuring only a short story without further discussion or those including a more detailed content.
Articles with detailed content were further analysed for the usage of ‘brain death’ associated with (1) definitions of ‘brain death’ (eg, the standard definition for the USA17 ,18 and Canada,19 ,20 which considers DNC as the irreversible cessation of all functions of the entire brain, including the brainstem; non-standard definitions for the USA and Canada such as ‘brainstem death’, which is accepted in the UK21; high-order brain death; or inaccurate and incomplete definitions); (2) determination of death (eg, mention of cardiocirculatory criterion vs neurological criterion for determination of death, tests or conditions required to meet the criterion, confusion about time of death); (3) end-of-life issues (eg, approaching families about organ donation at the end of life; depiction of life support (LS) based on grammatical usages such as ‘keeps alive’ and ‘keeps organs alive’); (4) organ donation (eg, donation after cardiocirculatory death, ‘brain death’ as a prerequisite for organ donation); and (5) legal issues. Content analysis was conducted using the NVivo 8 software (QSR International, Doncaster, Australia). A preliminary round of coding led to minor changes to the coding guide, addressing problematic areas and clarifying definitions of codes to improve consistency between both coders. Subsequent coding was conducted independently. When specific questions or uncertainty arose, consensus was obtained through discussion between coders. We adopted a rich coding strategy (content was coded in as many categories as appropriate to fit the data). Independent intercoding reliability was 0.98% agreement (SD 2.1) tested on a random subsample of 95 articles (10% of all articles of the final sample proportionate to each coder's contribution to coding). Using results from NVivo 8 searches, we generated descriptive statistics to report the frequency of application of codes. Results for the American and Canadian samples were compared using Fisher tests with statistical significance established at the p value of 0.05. Subsequent qualitative analysis was conducted for each code to identify the salient differences. These were identified in the form of recurring and salient content items, which were then grouped and reported in specific tables. Abridged references for media articles are given when cited in the tables.
We gathered 940 media articles published between 2005 and 2009, from major American (N=519) and Canadian (N=421) newspapers (figure 1). Data reveal that more articles were published in 2005 than in other yearsii (figure 1A).
Analysis of headlines revealed that the notion of ‘brain death’ (or its equivalent) appeared in only 3.3% (N=31) of all article headlines. One quarter (25.9%; N=243) of the headlines (19.3%; N=100 in the USA; 34%; N=143 in Canada; p<0.0001) referred to non-‘brain death’ health issues such as organ donation and end-of-life situations. In terms of content, 38.9% (N=366) of the articles used the notion of ‘brain death’ colloquially usually to refer to a person or action considered rash or thoughtless. Politics, arts and entertainments as well as sports were identified as the main areas where ‘brain death’ was used colloquially with no difference between American and Canadian newspapers except for the subitem of politics (8.9%; N=46 in the USA and 5%: N=21 in Canada; p<0.05).
Analysis of the body content of the articles revealed that short news and short stories, mentioning ‘brain death’ as a diagnosis with no further details related to the medical context accounted for 11.2% (N=105) of all articles. An example is ‘Shannon O'Leary and baby Hailey O'Leary-Ferguson died instantly. Her daughter Taylor was pronounced brain dead in hospital. O'Leary's critically injured son Ethan, 4, has recovered’.22 Nearly, half of all articles (N=470; 46.6%; N=242 in the USA and 54.2%: N=228 in Canada; p<0.05) included more detailed information about ‘brain death’ used in a medical context and related health issues as mentioned previously. These articles were analysed in greater detail (table 1).
Qualitative content for definitions of ‘brain death’ in American and Canadian print media*
Standard definitions (Whole-brain death)†
‘… the irreversible loss of capacity for consciousness combined with the irreversible loss of all brain-stem functions and capacity to breathe.’ (National Post, 16 September 2005)
‘‘Brain death’ or, more accurately, death by neurological criteria, is defined as the irreversible cessation of all functions of the brain, including the brain stem.’ (The New York Times, 1 May 2005)
‘Brain death, he says, takes place when a severe brain injury such as stroke or trauma causes both the upper brain (or cerebral cortex) and brain stem to “permanently and irreversibly lose” all function.’ (The Toronto Star, 13 April 2008)
Brainstem death (Lower brain death)
‘In the UK, however, brain death can occur according to brain-stem criterion alone, wherein the brain stem stops functioning, in effect cutting off the abilities of the cortex.’ (National Post, 16 September 2005)
Neocortical death (Higher brain death)
‘There has been debate over whether a third classification, cerebral-cortex criterion, should be considered for declaring brain death. In this case, the patient is essentially in a vegetative state. The cortex no longer functions, so thinking is inhibited, but brain-stem abilities such as spontaneous breathing or heart beating can occur. This criterion is largely refused by medical communities as a way to determine brain death.’ (National Post, 16 September 2005)
Incomplete or inaccurate definitions‡
‘Historically, the only time patients could become organ donors was once they were declared brain dead, which meant they were irreversibly unable to breathe, without a heartbeat, and often unconscious.’ (National Post, 16 September 2005)
‘Across most of the USA, the standard for declaring someone dead calls for the entire brain to cease function, including the brain stem, which controls breathing.’ (USA Today 5 October 2005)
*See table 1 for quantitative data.
†Standard definitions of ‘brain death’ refer to whole-brain death as accepted by leading medical and neurological societies in the USA or Canada (see ‘Methods’ section).
‡Determined to be incomplete or inaccurate in comparison to North American standard definitions (eg, irreversibility of the cessation of brain function not mentioned).
Qualitative content for confusion regarding the time of death in the American and Canadian print media*
‘Four years ago, a hit-and-run driver struck my then-fiancé Rajiv, leaving him brain-dead and reliant on a ventilator. (…) To the contrary, my memory of the three days Rajiv spent in the hospital—before his organs were harvested and his life officially ended—leave me profoundly sympathetic to Terri Schiavo's parents’ desire to keep their daughter alive.’ (National Post, 31 March 2005)
‘The next day, he was transferred to Montefiore Children's Hospital and later was declared brain dead. Teron's family refused to allow doctors to take him off a ventilator and even got a court injunction. But on Thursday, the family gave permission to have Teron taken off the machine. He died within minutes.’ (New York Daily News, 2 May 2005)
‘A brain-dead woman who was kept alive for 3 months so she could deliver the child she was carrying was removed from life support yesterday and died, a day after giving birth.’ (The Toronto Star, 4 August 2005)
‘The next day, she was confirmed brain dead at 15:05 Her ventilator was disconnected at 17:35. She passed away at 17:50’ (Vancouver Sun, 15 October 2005)
‘That evening Mrs. Cregan was declared brain-dead. The family had her respirator disconnected the next morning, and she died almost immediately.’ (The New York Times, 24 April 2005)
‘The child was determined to be brain-dead and life support was discontinued on 26 January 2001, and the child was declared dead when her heart stopped, Hlady said.’ (Vancouver Sun, 31 October 2007)
*See table 1 for quantitative data.
Qualitative content for depictions of life support mentioned in relation to ‘brain death’ in the American and Canadian print media based on grammatical usage*
Patient is ‘kept on life support’ (non-specific)
‘Paez, 23, was awaiting arraignment on attempted murder and assault charges last night, while her brain-dead infant son was on life support at Elmhurst Hospital Center.’ (New York Daily News, 6 April 2008)
‘A fourth officer remained on life support yesterday after being pronounced brain dead.’ (The Toronto Star, 23 March 2009)
Life support ‘keeps the brain dead patient alive’
‘A brain-dead woman kept alive artificially for more than 2 months gave birth to a premature baby girl, doctors at a Milan hospital said.’ (Vancouver Sun, 31 June 2006)
‘Still, whether you think a legal market for organs is a brilliant or a dreadful idea, it's a political nonstarter, so it is important to obtain donors from another possible source: patients who have been declared ‘brain dead’ but are being kept alive temporarily.’ (The New York Times, 27 September 2009)
Life support ‘preserves organs or maintain body functions’†
‘She had been declared brain-dead May 7 after the stroke caused by an undiagnosed case of melanoma that spread to her brain. At the request of her husband, Jason, doctors kept her breathing so the foetus could grow.’ (USA Today, 4 August 2005)
‘Brain death means a person's entire brain—including the brain stem, which controls basic functions such as breathing—has ceased to function. The body is supported on a ventilator for a short period of time after brain death has been declared to facilitate organ and tissue donation and retrieval.’ (National Post, 11 April 2006)
Life support ‘is removed/withdrawn’
‘Sokol, an avid athlete who was in excellent health, suffered a cerebral haemorrhage and was declared brain-dead. Her family took her off life support soon afterward.’ (The Washington Post, 1 November 2009)
‘Doctors determined later that night that Gaurov was brain-dead. A day later, on March 20, 1992, he was removed from life support.’ (The Globe and Mail, 26 May 2008)
*See table 1 for quantitative data.
†Usually while waiting for a specific event and for a specified time period.
Definitions of ‘brain death’
The definitions of ‘brain death’ identified in the articles were classified into standard and non-standard definitions (see ‘Methods’ section for explanation). Only 2.7% (N=14) of the American papers and 3.6% (N=15) of the Canadian papers presented any of these definitions of ‘brain death’ (table 1). Qualitative examples and details of these found in the media follow the table (box 1).
Determination of death
Determination of death was discussed in 20.1% (N=189) of the articles (table 1). Tests and conditions required for determination of death, for cardiocirculatory (3%; N=28) and neurological criteria (4.8%; N=45), were rarely mentioned. We found no statistically significant differences between the American and Canadian print media regarding misconceptions, misunderstandings and confusion about the time of death, but misdiagnoses, defined as reported survivals after DNC, were found more in Canadian articles (2.4%; N=10) than in American articles (0.2%; N=1; p<0.05). Several articles suggested that the patient whose death is declared following the neurological criterion actually dies a second time when the heart stops beating. Some suggested that death occurred after organs were harvested for transplant (box 2).
End-of-life issues were present in 21.9% (N=206) of all articles. Life-sustaining treatments and LS were frequently mentioned and discussed when death following neurological criterion occurred (table 1, 22.2%; N=115 in the USA and 15.7%; N=66 in Canada; p<0.05). The articles typically observed that following DNC, life-sustaining treatments were removed or to be discontinued, and frequently stated that the patient was ‘kept alive’ by these devices and treatments. An interesting fact to note is that in the American media, LS being referred to as ‘keeping alive’ the dead patient according to the neurological criterion of death, was in the same proportion as ‘preserving organs’ with possible donation in mind (6.2%; N=32). These different statements about LS are illustrated using qualitative examples (box 3).
Organ donation was the most frequent content item associated with ‘brain death’ (present in 21.2%; N=110 of the American articles and 33.5%; N=141 of the Canadian articles; p<0.0001). ‘Brain death’ was presented as a prerequisite for organ donation (20.6%; N=107 vs 32.8%; N=138; p<0.0001), and to introduce and discuss donation after cardiac death (DCD) (3.7%; N=19 vs 9.3%; N=39; p<0.05).
The objective of this study was to examine depictions of ‘brain death’ in American and Canadian print media in order to understand the information available to the public on DNC and to identify potential sources of confusion surrounding this notion. Using a systematic content analysis approach, we discovered prevalent colloquial uses of the term ‘brain death’, rare definitions of DNC and even rarer reporting of the criteria for determination of death. Issues related to the end of life and organ donation were common but, typically, ‘brain death’ was very rarely the primary focus (table 1) and figured as a secondary item in the coding strategy (see online supplementary figure). Overall, the American and Canadian news coverage was equivalent with a few salient differences. Less frequently, American headlines contained the term ‘brain death’ and Canadian headlines referred to organ donation more often. Colloquial uses were similarly frequent except that the American articles included more allusions to politics. More Canadian articles contained detailed background information and the topics of organ donation, DCD and ‘brain death’ as a prerequisite for organ donation. These features may be explained by the highly publicised 2006 Canadian forum recommendations on DNC as well as donation after death determined by cardiocirculatory criteria, led by prominent Canadian physicians involved in this debate.20 ,23 More often, the American articles discussed LS and legal issues related to ‘brain death’. Our study has identified specific sources of confusion common in major American and Canadian media regarding the definition and criteria for DNC, including the misunderstanding that ‘brain death’ is not death until the cessation of cardiocirculatory function. Several questions stem from our data. First, and given the observed challenges, is the notion of ‘brain death’ useful from a clinical and public understanding perspective? Second, does the confusion about the notion of ‘brain death’ inform on the origins and sources of confusion in the scholarly literature about DNC?
Is the notion of ‘brain death’ still useful, given ongoing confusion and debates?
Our study exposed significant confusion about ‘brain death’. One striking general observation is that the notion of ‘brain death’ is frequently used colloquially, potentially jeopardising any clear and rigorous medical meaning attributed to it by the public and, to some extent, by experts who engage the public in medical and ethical discussions. Second, and perhaps more troublesome, is the lack of clear and precise meaning associated with the term when it is used non-colloquially. The neurological criterion for determination of death is mentioned in less than 10% of the articles and specific tests or conditions required to meet this criterion described in only half of those (4.8%; N=45). This term is also infrequently defined (2.7%; N=14 in USA and 3.6%; N=15 in Canada) and standard definitions have similar distribution to non-standard definitions (N=16 vs N=13). Important errors about ‘brain death’—diagnosis, understanding and time of death—are found in respectively 1.2, 5 and 5.3% of all articles. The lack of unequivocal meaning attributed to ‘brain death’, which has been an ongoing source of debates and discussions,2 may not come as a surprise, despite general consensus worldwide of the professional clinical societies.24 Several studies have illustrated the generally poor informational value of traditional media about neurological conditions like the vegetative state and coma.15 ,25 However, there exists profound confusion about ‘brain death’ in the media, which brings to the forefront the questions about its genuine ability to engage and support clinical discussions and, more broadly, public information. Previous reports suggest important public understanding challenges, illustrating that the logical implications of DNC (eg, that it equals death and therefore allows organ harvesting) are poorly integrated in the public13 ,26 ,27 and in medical specialists28–30 even if, in general, the Americans and Canadians strongly favour organ donation.31 ,32 Our data suggest that ‘brain death’ is frequently used in the media in connection with organ donation issues mainly as a prerequisite for donation. Consequently, the public takes this to believe that this is what is needed to become an organ donor. Nonetheless, it is unclear whether the public considers DNC as the straightforward equivalent of death. The confusion in media reports (eg, DNC is not really death and there are accordingly two deaths; LS is not depicted as maintaining organs alive after DNC but as maintaining the individual per se) suggests that the public and families implicitly accept that merely a severe neurological condition without any possible recovery (and not DNC) would be a sufficient criterion for organ donation, a confusion also reported in speciality physicians.29 ,30 Although the scientific integrity of the notion of DNC as such does not rely on public acceptability, its practical utility in conveying a reasonably accurate and meaningful message to families and the public should be assessed in further research.
Does public confusion inform on the nature of debates about ‘brain death’?
A second important question intimately related to our observations is whether the public confusion, we observed, reflects public confusion in the media or perhaps a more profound insight into the nature of academic debates among experts. Are the media expected to reflect a canonical view of DNC which is, in all fairness, widely acknowledged by different states and professional societies but also is, in some respect, still debated by experts themselves? Landmark contributions1 ,2 ,33 and guidelines of professional societies17 ,20 ,34 have brought clarity and credence to the standard definition of DNC. However, recent critiques have made any clear meaning of DNC more challenging than ever and even counterintuitive.35–37 The central role of the brain in DNC was argued to be due to its role in allowing the organism to function physiologically as a whole.33 ,38 However, some reports have suggested prolonged biological functioning after declaration of DNC, such as the possibility for a brain-dead woman to pursue pregnancy until viability of the fetus.6 Such observations have called into question the encompassing nature of the concept of DNC based on physiological integrity alone. In response to these criticisms, in our opinion, the strongest (albeit perfectible) argument for DNC has relied recently on revised and more elaborate philosophical arguments that DNC equates to the death of the organism as a whole.39 ,40 Accordingly, different organs can be maintained separately but the organism as a whole does not exist anymore because its sum is qualitatively different than its parts. The arguments in favour of DNC as death of the organism as a whole rely partly on the assumption that DNC ‘provides the most congruent map for our correct understanding of death’ and that definitions of death should include the ‘indispensable characteristics of death that comprise our implicit, consensually agreed-upon concept of death’.39 However, our data perhaps show unsuspected complexity in the relationship between, on the one hand, expert attempts to clearly define DNC and, on the other hand, any publically and ‘consensually agreed-upon concept of death’. The definition of death that has been defined by scholars and experts can be considered to convey the most profound and rigorous meaning of death. However, the expert definitional processes may have introduced an estrangement with ‘consensually agreed upon’ or lay perspectives on death. This could perhaps help explain in return why, in practice, the notions of DNC or ‘brain death’ remain difficult to capture consistently outside the circles of experts in the daily clinical context of organ donation or in the media, as this study and others have shown.12 ,13 The relationship between the expert process of defining and refining DNC and its clinical and practical implications could be a pivotal aspect to be examined more closely. Critiques of DNC are often presented in ways that unduly damage public confidence in organ donation procedures because they radically question the expert process.41 They criticise the flaws of DNC by evidence of the public and clinicians’ confusion.9 Such critiques could be based on a misunderstanding of the nature of expert processes and of clinical realities. And they do not constitute an argument against the integrity of DNC. Conversely, a tight overlap between lay and expert understandings of death advanced by some proponents of DNC may also not be a decisive argument in favour of DNC because the expert process may involve more intellectual reconstruction than a simple explication of the implicit lay meanings of death. Better contextualising the roles of the expert and scholarly processes surrounding the debate would help address the misunderstandings on both sides.
This study examined the depictions of ‘brain death’ in the American and Canadian print media to gain insights into possible common sources of confusion about DNC and the relationship between lay and expert views of this notion. We showed striking similarities of problematic aspects in the American and Canadian print media coverage. Further discussion should address the practical utility of the notion of DNC. Patient-family as well as public discussions should reinforce the genuine nature of neurological determination of death as a criterion to establish death, the timing of death based on DNC and appropriate descriptions of LS in the context of DNC. The nature of expert conceptual work on brain death and related scholarly debates needs to be contextualised to avoid undue collateral damage to public confidence in DNC and organ donation practices.
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Contributors Both authors participated in the conception and design, acquisition, analysis and interpretation of data; drafted the article and revised it critically for important intellectual content and approved the version submitted. The first author, AD, takes full responsibility for the data, the analyses and interpretation and the conduct of the research.
Funding Canadian Institutes of Health Research and Université de Montréal (Grant #90897 and New Investigator Award).
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
↵i In this paper, we use the term ‘brain death’ to capture how the public usually talks about this phenomenon, but we use the expression ‘death by neurological criterion’ (DNC) to refer to death determined by neurological criterion, that is, the irreversible cessation of all functions of the entire brain. The expression DNC avoids suggesting, as in ‘brain death’, that only the brain dies (and not the organism as a whole), which may be a possible source of confusion in media reports and scholarly work. We have not used the more common concept ‘neurological determination of death’ as a substitute to ‘brain death’ because the former expression captures the procedure to establish death and not explicitly (as a grammatical construct) that DNC is death itself. Accordingly, in our results and when referring to public understanding of DNC, we refer to it as ‘brain death’, but when discussing the concept and the literature we use the term DNC.
↵ii Based on our observations during the coding of the sample, we examined the hypothesis that highly publicised clinical cases could explain this peak in publications. Initially, there was the case of Terri Schiavo, an American woman in persistent vegetative state whose end-of-life situation was at the heart of legal and ethical debate over this year. In Canada, 11.1% (N=13) of the articles published in 2005 contained the term ‘Schiavo’. In the American sample, this number increased to 15.2% (N=26). During the same year, the case of Susan Torres also appeared in several articles, namely in 9.4% (N=16) of the American articles versus 6% (N=7) for the Canadian articles. Torres, a woman in her 20s, was kept on a respirator for several weeks, despite the fact that she had been declared dead, to allow her fetus to develop until its birth. Finally, the case of Teron Francis was featured in 6.4% (N=11) of the American articles published in 2005 but in none of the Canadian articles. The family of this boy who had been declared ‘brain dead’, engaged in a legal battle to prevent hospital authorities to withdraw life-sustaining treatments, which they considered futile. While these three cases together were present in 25.3% (N=73) of the articles found in 2005, they were only in 4% (N=8) in 2006 and 0.7% (N=1) in 2007. In 2008, no references had been made to these cases and only one (0.7%) was found in 2009. Therefore, reporting of highly publicised cases could explain the peak observed in 2005.