When diagnosis makes us blind

Anna Luise Kirkengen, Eline Thornquist About the authors

Diagnoses have unintended effects. In two Norwegian abuse cases it appears that the victims’ diagnoses have served as attention deflectors – abuse and violence may have been overlooked, because it was assumed that the children suffered from a disorder.

Illustration © Trond Nordahl

During recent months, the Norwegian public has followed and discussed two criminal trials: The so-called Christoffer case (1, 2) and what the press has referred to as the Alvdal case (3, 4). The former case concerned extensive abuse of a boy, who finally died from his injuries. The latter case concerned sexual abuse of several children.

Despite their obvious differences, these cases had something in common – both were continuations of cases that had previously been under criminal investigation, in which the parents and/or step-parents were indicted for abuse that had mainly taken place in the children’s homes. Now the mothers were charged, and both were convicted. Christoffer’s mother was convicted of «passive contributory negligence» since she had failed to protect her son against a violent stepfather, who some years previously had been convicted of grievous bodily harm causing death. The second mother had a previous conviction for sexual abuse of her children, now also for abuse of a daughter who was not a plaintiff in the first judicial assessment. In this case – the Alvdal case – children were victims of abuse at the hands of parents, step-parents and neighbours.

A common feature of these cases is that they do not concern single events or acts, but systematic abuse over time.

Many questions can be raised in the aftermath of these trials. The media have primarily directed attention at the criminal aspects and focused on the problems that stem from the strong protection of privacy in our society. Many have claimed that the sentencing has been too lenient in these cases, and many have voiced concern regarding how cases involving violence against children are handled in general. Otherwise, it appears that «everybody» agrees that the trials have served as a wake-up call and that they have reinforced the legal protection of children. The main message sent by the media is this: When we learn of violence, abuse and neglect, we are all responsible for reporting it.

Our concern differs from that of the media, even though the problem areas overlap. We will discuss and problematise the function of diagnoses in a broad sense (5). Herein we will raise questions related to the use and abuse of diagnostics in general, and to the diagnoses that were reported in these cases in particular. Both of the victims concerned in these trials had undergone comprehensive medical examinations: Christoffer had been diagnosed with ADHD (attention deficit hyperactivity disorder) and as a child, the young woman had been diagnosed with Asperger’s syndrome. Even though the diagnoses have been reported in both cases, we are not familiar with any discussions of the effects they may have had and how these concern doctors and other health personnel in particular.

Diagnostics – multiple functions

As we know, diagnoses have several functions – some of them intended, others unintended. Their primary function is to provide guidelines for treatment. However, there is power associated with defining a health problem; it concerns the right to create certain images of reality and decide which problems belong to the areas of responsibility of medicine and health care. The notion of diagnoses as objective and indisputable categories and diagnostics as a neutral mapping has a solid foothold in many quarters – inside as well as outside the health services.

Similarly, there is a widespread tendency to let medical viewpoints overrule all other notions of «reality». With reference to, for example, the use of ADHD, the sociologist Andrew Abbott writes that it is based on the idea that subjective opinions have been replaced by objective definitions, as though these are not encompassed by subjective assessments (6). Thereby, suffering is relocated «from the social to the clinical arena» (7).

In retrospect, it appears as though the medical nomenclature, the very diagnostic act, in both cases served as affective attention deflectors. Since certain observable behaviours and verbally communicated experiences and afflictions had been given the status of symptoms, the children were categorised as «ill», i.e. as characterised by certain pathological conditions, and not as «injured» by something that had been inflicted on them by others. It is worth noting – and reflecting on – how the diagnoses and the basis on which they had been made were not referred to in the trials. In both of these children, behaviours and health afflictions were «read» into a medical interpretive framework and awarded meaning as symptoms. Thus, the diagnoses were given a kind of explanatory value that steered the attention of those concerned. Since it was assumed that the children suffered from a disorder, the fact that they had sustained injuries from violence and abuse was overlooked.

The diagnoses ADHD and Asperger’s syndrome are formed on the basis of symptoms and behaviour that may have been caused by a variety of conditions (8). The danger inherent in all diagnoses is to use them to explain various – occasionally all – aspects of a person’s behaviour or way of life (5). The high status of medical science, coupled with its claim to ultimate truth, may steer the attention of those concerned in certain directions and cause both professionals and laypeople to disregard their own experiences, observations and assessments. Moreover, the way in which afflictions are conceptualised will inform the patients’ self-conception.

A consequence of this could be that the patients themselves as well as those who encounter them are reluctant to trust their own experiences and assessments if these go against medical «truth». In a sense, the diagnoses seduce everybody, so that they see through what can be termed medical spectacles. or with what Michel Foucault, historian of ideas, has identified and described as «the medical gaze» (9).

Professional neglect

International research literature has long since pointed out that it constitutes professional neglect when health personnel fail to consider or actively seek information on experiences of abuse, or ignore signs of problems or powerlessness communicated by the patient in a more or less verbal and/or bodily manner (10 – 12). Both of these occur, and they contribute in equal measure to the failure to include such experiences in the medical assessment of the disease in question.

The studies not only show that abuse and illness are obviously interconnected, even though in a medical sense it remains unclear in what way (13, 14). They also document how little importance the health professions place on traumatic experience as an element of human health, and that doctors on the whole fail to collect information on traumas, apart from injuries sustained in accidents (15).

This pathogenic dynamic has been referred to and characterised as «the interaction between the cycle of domestic violence and the cycle of professional neglect» (15). The health workers’ lack of interest in and knowledge about matters that take place in the private sphere and behind closed doors may help perpetuate such abuse. Thereby, they are transferred from one generation to the next, and may result in various types of morbidity.

The documented types of morbidity that follow from abuse encompass cancer, cardiovascular diseases, stroke, type 2 diabetes, infections and chronic systemic inflammations, as well as a number of mental disorders, as made clear by the WHO report Violence and health (16). This means that professional neglect contributes to the cycle above at several levels, i.e. in research, education and practice. Such neglect is incompatible with the remit and professional self-image of the health professions.

Body and illness – depersonalised

A core problem in bio-medical knowledge production concerns how medical science views human beings and understands the body. Bio-medical knowledge is reductionist in nature and based on a depersonalised body, a body severed from human experience and meaning – and this accounts for a correspondingly narrow view of knowledge (17 – 19).

Adequate knowledge about health and illness requires, however, taking into account that people exist in the world as bodily sentient beings, and that all forms of human experience are meaningful and may entail consequences for health and pathogenesis. People are historic beings – experiences cannot be deleted, all experiences remain with us through life, but they can be channelled and manifest themselves in many different ways (5, 11 – 14).

With a notion of the body that entails ignoring the human world of experience and meaning, there is always a risk of interpreting symptoms, deviant behaviour and pathological findings as signs of illness in the individual body – as severed from the interplay with other people and disregarding the life context of the person (20, 21). However, since this view of the human and the body is based on an abstract notion which is not suitable as a description of how people live their lives, this leads to a quest for «solutions» that are inadequate and may conceal pathogenic relationships and environments and exacerbate afflictions and disorders (22).

Medicalisation

Certain conditions are especially challenging to encounter. This applies especially to problems found in the border zone between matters that traditionally are defined as somatics and psychiatry respectively, such as ADHD and Asperger’s syndrome. As diagnoses, these are controversial, as can be shown by the process of their revision in the transition from DSM-IV to DSM-5.

Since the diagnoses ADHD and Asperger’s syndrome are used with increasing frequency, it is not unreasonable to ask why this is so and the effects that this may have in a broad sense. It is crucial to see the case of Christoffer and the Alvdal case in the context of contemporary medicalisation, where an increasing number of problems are defined as expressions of illness. In the aftermath of these cases we will accordingly need a debate on what directs our attention, the basis for making diagnoses and for what purposes these diagnoses can be (ab)used.

1

Christoffer-saken. http://no.wikipedia.org/wiki/Christoffer-saken (30.5.2013).

2

Christoffer-saken. www.vg.no/nyheter/spesial.php?id=8397 (30.5.2013).

3

Alvdal-saken – samleside oppdateres. www.familiestiftelsen.no/node/15225 (30.5.2013).

4

Alvdal-saken. www.dagbladet.no/tag/alvdal-saken (30.5.2013).

5

Thornquist E. Kommunikasjon: Teoretiske perspektiver på praksis i helsetjenesten. 2. utg. Oslo: Gyldendal Akademisk, 2009.

6

Abbott A. The system of professions. Chicago: The University of Chicago Press, 1988.

7

Summerfield D. The invention of posttraumatic stress disorder (PTSD) and the social usefulness of psychiatric categories. BMJ 2001; 322: 95 – 8.

8

Diagnostic and Statistical Manual of Mental Disorders. Fourth Edition. Washington D.C.: American Psychiatric Association, 2005.

9

Foucault M. The birth of the clinic: an archeology of medical perception. New York: Vintage Books, 1975.

10

Becker-Blease KA, Freyd JJ. Research participants telling the truth about their lives: the ethics of asking and not asking about abuse. Am Psychol 2006; 61: 218 – 26. [PubMed] [CrossRef]

11

Felitti VJ, Anda RF. The relationship of adverse childhood experiences to adult medical disease, psychiatric disorders and sexual behavior: implications for healthcare. I: Lanius RA, Vermetten E, Pain C, red. The impact of early life trauma on health and disease. The hidden epidemic. Cambridge: Cambridge University Press, 2010.

12

Read J, Hammersley P, Rudegeair T. Why, when and how to ask about childhood abuse. Adv Psychiatr Treat 2007; 13: 101 – 10. [CrossRef]

13

American Academy of Pediatrics. Policy statement: Early childhood adversity. Toxic stress, and the role of the pediatrician: translating developmental science into lifelong health. Pediatrics 2012. doi: 10.1542/peds.2011 – 2662

14

American College of Obstetricians and Gynecologists. ACOG Committee Opinion No. 518: Intimate partner violence. Obstet Gynecol 2012; 119: 412 – 7. [PubMed] [CrossRef]

15

Krugman RD, Cohn F. Time to end health professional neglect of cycle of violence. Lancet 2001; 358: 434. [PubMed] [CrossRef]

16

Krug EG, Mercy JA, Dahlberg LL et al. The world report on violence and health. Lancet 2002; 360: 1083 – 8. [PubMed] [CrossRef]

17

Cassell EJ. The person in medicine. Int J Integr Care 2010; 10 (Suppl): e019. [PubMed]

18

Leder D. red. The body in medical thought and practice. Dordrecht: Kluwer Academic Publishers, 1992.

19

Gordon DR. Tenacious assumptions in Western medicine. I: Lock M, Gordon DR, red. Biomedicine examined. Dordrecht: Kluwer Academic Publishers, 1988.

20

Kirkengen AL, Thornquist E. The lived body as a medical topic: an argument for an ethically informed epistemology. J Eval Clin Pract 2012; 18: 1095 – 101. [PubMed] [CrossRef]

21

Thornquist E. Vitenskapsfilosofi og vitenskapsteori for helsefag. Bergen: Fagbokforlaget, 2003.

22

Kirkengen AL. Inscribed bodies. Dordrecht: Kluwer Academic Publishers, 2001.

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