Abstract
Psychiatric classification, as exemplified by the Diagnostic and Statistical Manual of Mental Disorders (DSM), is dealing with a lack of trust and credibility—in the scientific, but also in the public realm. Regarding the latter in particular, one possible remedial measure for this crisis in trust lies in an increased integration of patients into the DSM revision process. The DSM, as a manual for clinical practice, is forced to make decisions that exceed available data and involve value-judgments. Regarding such decisions, public epistemic trustworthiness requires (1) that these value-judgments should be representative of those of the affected public, and (2) that the public has a reason to believe such a representation to be realized. Due to the long tradition of (public) distrust in psychiatry, such a reason can in this case best be provided by an actual integration of patients into the decision-making process, rather than by their representation through scientific experts.
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Notes
The DSM is produced and used primarily in the USA, while most other countries use the International Classification of Diseases (ICD) of the World Health Organization (WHO). However, as these nosologies strive for compatibility and are revised in hindsight of each other, the DSM’s impact extends beyond the North American context. This is even more so as much research on psychopathologies is being done in the USA and thus based on DSM diagnoses shaping study populations. The latest ICD revision (ICD-11) has just been released and many of the controversial issues surrounding the DSM-5 now stir up again. Similar to the DSM (see below), the WHO had also published a draft version of the revised ICD online and invited public comments. Due to the DSM’s central state in the current philosophical debate, I will focus on the latest DSM revision here.
I am not arguing here that all of the mentioned critics are correct or fair (although I consider many of them to be reasonable concerns); rather, this section aims to illustrate the widespread nature of distrust in the DSM, thereby providing evidence for a current crisis. The term “crisis” may be considered as too strong by some; I use it because of the ubiquity of DSM-critiques and controversies (for a discussion of whether it is justified to speak more specifically of a crisis in a Kuhnian sense, cf. Poland and Tekin 2017b, Pouncey 2017).
Although I do not have the space to argue for it here, I would like to mention that I strongly support this call for a greater taxonomic pluralism in psychiatric classification. One of the central problems of the DSM is that it is supposed to be a scientific as well as clinical and administrative tool and, as such, faces different and sometimes incompatible requirements (cf. also Tsou 2015). The RDoC therefore may be most fertile if it continues to target research instead of aiming to replace the DSM in all contexts.
I will use the term “patient” here rather than other options such as “service user” or even “client”, as the latter two (for me) connote that the use of mental health care is a voluntary decision one might also refrain from, which is not representative of the reality of many of those who live with mental illness. Moreover, not all patients may be able to speak for themselves, wherefore the integration discussed here also extends to the people caring for them.
To completely spell out such a proceduralist framework of scientific epistemic trustworthiness specifically tailored to the revision of psychiatric taxonomies is certainly a worthwhile (and demanding) task for future research (cf. also Sadler 2002 for some further proposals of procedural improvements). Here, I will however concentrate on the integration of patients as an additional procedural criterion of public epistemic trustworthiness.
Most of these decisions might very well be in principle empirically underdetermined; for example, whether a certain condition is a disorder or rather a normal variation (see below). At the very least, it seems unlikely that all of these questions will just be unequivocally solved by future empirical evidence. It is therefore important to keep in mind that even if the RDoC succeeds in explaining mental disorders as dysfunctions in brain circuits, this would not by itself remedy the need for value-laden decisions (and thereby make patients’ inputs in taxonomic decision-making obsolete).
For instance, current criteria include possible symptoms such as “often fails to give close attention or makes careless mistakes in schoolwork, at work, or during other activities”; “often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace”; “often leaves seat in situations where remaining seating is expected” (e.g., in the classroom) (APA 2013, p. 59 f.). It seems plausible that such behaviors constitute problems and thus qualify as symptoms relative to a certain socio-cultural context (which is, however, compatible with the possibility that ADHD does in fact result from a certain dysfunction or pathology).
While it is plausible that the people concerned should be listened to regarding such decisions that are empirically underdetermined and have direct practical consequences, it is important to note here that patients are not a monolithic group. For example, some advocates have protested against the deletion of Asperger syndrome from the DSM-5, as this diagnosis has become central to the identity of many autistic individuals. Others, however, have welcomed and supported the introduction of an Autism Spectrum Disorder (with specifiers for severity as well as intellectual impairment) (Hacking 2013b). Integrating patients thus has to proceed carefully in order to represent dissent among patients themselves, too (see Sect. 5).
Note that it also presumes the conditions of (social) objectivity to be adhered to. These include adherence to shared standards such as empirical adequacy. Therefore, this is not a case of introducing (patients’) values in the sense of wishful thinking or political correctness overriding empirical evidence, which would of course undermine both scientific and public epistemic trustworthiness. To avoid any danger of such an undermining, it is important to be clear and precise about where exactly value-laden decisions are made and patients’ perspectives can be helpful.
From another angle, Hacking (2013b) argues that patient advocacy has long since played an essential role in shaping the understanding and classification of autism, as many scientific experts in this area have been personally connected to autistic people. Thus, the division between experts and advocates is not always clear-cut, as expertise in the field does not exempt one from the possibility of suffering from mental illness.
The DSM-5′s inclusion of PMDD as an official diagnosis is a good example of a decision where patients’ and advocates’ perspectives could have served as a corrective means. Somewhat suspiciously, this inclusion occured at the same time as Prozac got re-patented as “Sarafem”, a pharmaceutical treatment for PMDD (a syndrome formerly known as PMS). The inclusion of PMS or PMDD as a mental disorder had met considerable resistance by feminists before (e.g., Caplan 1996; Chrisler and Johnston-Robledo 2002). One reason cited for its inclusion in the latest revision was that, apparently, the opposition had become tired of fighting. While there was considerable public reaction on other examples of inclusion or exclusion of diagnoses, there was not much feedback on PMDD (Zachar and Kendler 2013). One might interpret the DSM’s decision as being supported by a lack of public opposition here, thus as actually integrating laypersons’ perspectives. However, there might be many other reasons for this, such as a lack of media coverage. Thus, seeking diverse public perspectives on this matter might have served to forestall a premature consensus in this case and enhance the epistemic trustworthiness of the taxonomy (cf. also Solomon 2013).
A similar point about this lack of accountability has been made by Sadler (2002) with regard to the DSM-IV (calling for critiques and feedback to published proposals, but never making transparent how such feedback has been dealt with and not explicitly answering it).
To a certain extent, this seems to be already the case. Whooley (2010) finds a significant amount of intentional misdiagnoses in clinical practice, as clinicians ponder on the effects diagnoses can have for patients in terms of stigma versus access to health care. This need not mean that the DSM has low clinical utility, however. In fact, a certain leeway in diagnostics might even be considered a good thing in the light of possible consequences for individual patients, as long as it does not get too arbitrary.
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Acknowledgements
I want to thank Martin Carrier, Anne-Marie Gagné-Julien, Gürol Irzik, Saana Jukola, and Torsten Wilholt for helpful comments, as well as Alfons and Najko Jahn for their support. Moreover, the audiences at the workshops on “Responsible Research and Innovation” (Bielefeld) and “Issues in Medical Epistemology” (Cologne) have provided very valuable feedback on earlier versions of the paper.
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Bueter, A. Public epistemic trustworthiness and the integration of patients in psychiatric classification. Synthese 198 (Suppl 19), 4711–4729 (2021). https://doi.org/10.1007/s11229-018-01913-z
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DOI: https://doi.org/10.1007/s11229-018-01913-z