![Sample our Social Sciences journals, sign in here to start your FREE access for 14 days]({"type":"image" , "src" : "/sda/110822/TOC-Subject-Sample-2021-Social-Sciences.jpg"})
Abstract
This paper seizes Ivan Illich’s recurring notion of corruption to reflect on medicine’s immanent spiral of maleficence. For Illich, the institutionalization of any ‘good’ necessarily corrupts it, and the institutionalization of health and care under the tutoring hand of medicine has produced counterproductive consequences on every plane. The paper explores the nemetic character of contemporary biomedicine – whose growth in technique has meant a corresponding growth in its capacity for corruption and harm – in an autoethnographic project that apprises and names the escalation from iatrogenic harm to iatrogenic violence that the author discovered at two UK hospitals in 2014. In January, she went to the hospital for a colonoscopy; in November, she finally left, disabled and unmade. In the interim, she suffered infection, sepsis, pneumonia, cardiac arrest, and – worst of all – a factitious psychiatrizing diagnosis embedded in spiralling loops of iatrogenic harm. By reflecting critically on this experience, interlocuting personal memory and writings with doctors’ inscribed notes and insights from medical anthropology, the paper elucidates an iatrogenic spiral, showing how unknowable bodies pose an insurmountable epistemic and existential challenge to medicine’s technic mandate, how medicine locates and uses an ‘epistemic escape valve’ in the face of such challenges, and how snowballing nosocomial harm escalates into brutality and vice. The argument, in short, is that iatrogenic violence (destructive, subjective or agentic, and intentional) is the natural endpoint of iatrogenic harm (destructive but objective or systemic, and unintentional)
Subject classification codes::
Acknowledgements
The author is grateful to Anna Geltzer and Tori Davies at the University of Notre Dame’s Reilly Center for Science, Technology, and Values; to Emma Varley and Saiba Varma, the editors of this special issue, for their very helpful ideas and criticisms; and to the two anonymous reviewers, who extended to me the most helpful (and gracious) review comments I have ever received.
Disclosure statement
No potential conflict of interest was reported by the author.
Data availability statement
The full medical record is available for consultation upon to the author’s representative.
Supplemental online material
This paper draws on earlier materials developed in the Knowing Violence project. The project’s five papers and three creative videos are freely accessible online via the links listed at https://www.academia.edu/37280600/Knowing_Violence_-_Research_Program_Summary_2017-2019.
Notes
1 Medical Nemesis is the title Illich gave to the book in which he developed his conception of iatrogenesis. The arguments I present in this essay emerge from and converse closely with Illich’s thought and theory, and I urge readers, especially those unsettled by my claims here, to approach the Illichian writings in which they take foundation.
2 Taken in its constituent lexemes, autoethnography is precisely this, the self (auto) writing (graph) on or about the larger sociocultural phenomena (ethno) in which the author-subject is bound. This focus on the analysis of larger cultural phenomena is what distinguishes it from autobiography.
3 For an overview of narrative medicine, see especially two works spearheaded by the movement’s flag-bearer: Charon (Citation2001) and Charon, et al. (Citation2017).
4 Iatrogenic (doctor-produced) and nosocomial (hospital-produced) are two terms used to describe the undesired, harmful consequences of medicine or medicalization (e.g., ‘iatrogenic overdose’ or ‘nosocomial infection’). Ivan Illich’s work brought iatrogenesis into the social sciences mainstream in the 1970s, and both terms are commonly used in the medical and medical humanities literatures today.
5 In making this claim, I want to make very clear the distinction I intend between harm and violence. The first I intend as destructive and pernicious but not necessarily charged with the malevolence or express intentionality of the performers. Harms are, in the best of cases, the diffuse, system-bound indignities and errors that derive precisely from the de-personalizing effects of institutionalization, and, in the worst of cases, the unthought, unfelt banal evils whose very lack of intentionality makes observers shudder. Violence I intend as destructive and intended, subjective or agentic deliveries of pain or disabling from one person (in general, here, the doctor) to another (the patient). Most of the iatrogenic devolution is harm, and most medical workers deliver their harms with nothing but the best of intentions (cf. writings on ‘benevolent violence’ and the often very bad consequences of actions made with the enunciation of good intentions, e.g., in development or humanitarian intervention; see, e.g., Asad Citation2015; Barker Citation2017; Kothari & Harcourt Citation2004). The intentionality I infer to iatrogenic violence marks a volitional escalation from mere harm, and in this narrative it is reserved to the contents of the final section.
6 Jacques Ellul (Citation1964) captured this same sense of ever-growing corruption as the nature of technicity: ‘Technique must reduce man to a technical animal, the king of the slaves of technique’ (p. 138).
7 My general references to doctors and medicine in this paper pertain generally to contexts where ‘scientific’ or ‘Western’ medicine is practiced (which includes contexts in and outside the ‘West’): I am interested (again, in the general sense) in the epistemic and social authority granted to medicine and its practitioners rather than in their specific institutional or legal apparatuses to consummate that authority.
8 Numerous critics including Szasz, Laing, and Foucault have expounded on the codification of the incomprehensible or undesirable as psychiatric illness. In medical anthropology, good work has likewise explored the particular diagnostic rationalization of undesirable deviance and unexplained symptomatology in the terms of psychiatric illness (e.g., Scheper-Hughes Citation1978; Biehl Citation2005).
9 See the recent body of work on epistemic injustice, epistemic marginalization, and epistemic vice, particularly the foundational works by Fricker (Citation2007); as applied in healthcare (Carel and Kidd Citation2014; Kidd and Carel Citation2017); and generally in contexts of system-entrenched oppression (Dotson Citation2014; Medina Citation2013). It is a plausible argument (and one I adhere to) that a condition of epistemic injustice – and possibly also of epistemic hubris or vice – is inhered in and necessary to the achievement and identification of medical expertise.
10 See, e.g., feminist work on the situated knowledges thesis (most importantly, Haraway Citation1988), which rejects contentions of scientific objectivity altogether.
11 The Apparat, the grotesque death-penalty machine in Kafka’s (Citation2000) Penal Colony (which, of course, operates in conjunction with the penal colony’s complementing organizational, administrative, and technical apparatuses) – literally inscribes onto the Condemned Man the law he has violated: thus he is made to ‘experience [it] on his own body’ (136). My suggestion here is that medicine similarly uses its powerful apparatuses of organization, administration, and technique to write on those bodies it identifies as deviant.
12 For Jacque Ellul (1964), technique (la technique) is ‘the totality of methods rationally arrived at and having absolute efficiency … in every field of human activity’. Technique is an ever-expanding domain that extends far beyond what we ordinarily think of as technology, and proceduralized, protocolized, mechanistic-systemic scientific medicine is surely one of technique’s greatest conquests.
13 While I now take pains to document the diarrhoea (in an effort to neutralise my recent testimonial ineligibility, itself an iatrogenic product of this same narrative), the pain, as so many seekers of medical remedy, especially women, have discovered, is unmeasurable, unintelligible, and, as such, often unbelievable for medicine’s scientific celebrant. On the abnegation and delegitimization of women sufferers’ testimonies in particular, see, e.g., Epstein, et al. (Citation2006) and Werner and Malterud (Citation2003).
14 Of course, unexplainability is a routine aspect of medicine’s practice. It often results in the delegitimization of the patient’s suffering or the assignment of a psychiatric explanation or diagnosis. See the large literature on medically unexplained symptoms (MUS) generally (e.g., Nettleton Citation2006) and, in particular, in women (again, e.g., Werner and Malterud 2003).
15 See the major bodies of work that have developed over the past half-century in philosophy and anthropology on the objectification of the subject naturalized beneath the ‘medical gaze’ and the conceptual force of the Cartesian body in medicine (e.g., Foucault 2002, Leder Citation1984).
16 Abundant evidence shows that bed rest, particularly hospital-invoked bed rest, produces numerous and significant undesirable outcomes and often leads into a downward clinical spiral ending in death (Cruz-Jentoff et al. 2010; Winkelman Citation2009; Kortebein et al. Citation2008). Meanwhile, metanalyses show nutritional interventions to be widely ineffective (Jamieson and Porter Citation2013).
17 For example, food offerings were of generally poor quality from nutritional and gustative perspectives alike; there was a total absence of fruit; and, for the numerous patients who could not feed themselves, no assistance was offered. Research has demonstrated the prevalence of hospital-associated malnutrition (e.g., Barton et al. Citation2000), particularly in England (Elia Citation2009; Hiesmayr et al. Citation2009).
18 There is little research studying the effects of in-hospital sleep deprivation on patient outcomes. See Kamdar, Needham, and Collop (Citation2012), Pilkington (Citation2013), and Salas and Gamaldo (Citation2008) for reviews of sleep deprivation consequences generally.
19 In its 2014 review by the UK’s Care Quality Commission (CQC (UK Care Quality Commission) Citation2015), this hospital was rated in the worst category, ‘inadequate’, overall as well as in the majority of department- and criterion-based scoring groups. It was reprimanded for ‘essential standards of quality and safety [that] were not being met’ and placed under special monitoring and support measures. The local hospital trust tallied the third-highest number of MRSA cases in 2013/14 and 2014/15 across England’s 302 trusts (NHS Digital [Clinical Indicators Team] Citation2018).
20 All data and excerpts are taken from the medical record, which I obtained from the hospital following a substantial but superable challenge that was both wilful and bureaucratic in origin.
21 My lower legs were oedemic when I arrived at the hospital, likely due to hypoalbuminemia. Doctors attributed this, in what the reader will by now understand as the immutable logic en force, variably to anorexia and/or bulimia (i.e., to protein-calorie deficiency resultant from dramatically insufficient food consumption, or to the Pseudo-Bartter Syndrome that commonly follows purging). While these assume two very different pre-hospital scenarios, they are equally patient-inculpating and – crucially – serve equally well as epistemic escape valves, even in the seeming impossibility of their simultaneity. Of course, there are numerous other systemic causes of lower-extremity oedema, including liver and kidney disease and – notably, given my history and symptomatology – the protein malabsorption and unremitting diarrhoea typical of inflammatory bowel diseases such as Crohn’s. While I was in the hospital, the oedema expanded upward to affect also my thighs, arms, and hands, perhaps caused by the progressively worsening series of infections or by hospital-induced starvation. As I describe shortly, a necrotic ulcer emerged and grew to envelop the entire calf of my left leg; post hoc investigation suggests that this was a manifestation of either pyoderma gangrenosum or calciphylaxis, which feature very high degrees of pain and associate with autoimmune diseases (including inflammatory bowel disease) and/or can result as a consequence of iatrogenic infection. Since a visit from the pain specialist could not be arranged for several months, I suffered supreme pain until the necrosis advanced sufficiently that I lost feeling in the left lower leg altogether. For a review of leg ulcer types and characteristics, see Todhunter (Citation2020).
22 See note 15. [Database]
23 See also Roma Chatterjii (Citation1998) and Rom Harre (Citation1984) on the creation of ‘file selves’.
24 According to the British National Institute for Health and Care Excellence’s guidelines on nutritional support for adults (NICE Citation2017), enteral feeding should not be given to people unless they ‘have inadequate or unsafe oral intake’ (s. 1.7). Though it does not explicate the matter, the content and context make it clear that capturing ‘adequate oral intake’ is first the prerogative of the patient herself; the regulation is not meant to authorize the intentional withholding of food by medical staff so as to enable satisfaction of the criteria.
25 Tube feeding via nasogastric tube involves inserting a plastic tube into the nose, down the throat, past the pharynx, through the oesophagus, and into the stomach. Ordinary complications can include diarrhoea, vomiting, lung aspiration, electrolyte perturbance (Pancorbo-Hidalgo, Garcia-Fernandez, and Ramirez-Perez Citation2001), and infection. More seriously, the tube can enter and discharge its contents into the lung or bronchus, cause lung collapse, or perforate the oesophagus or sinus; these are not past problems. Following a decade of continuing patient harms and deaths resulting from nasogastric tube misplacement, the NHS Improvement unit (Citation2016) issued a Patient Safety Alert re-inscribing tube misplacement on its list of ‘Never Events’. Tube feeding is commonly used with patient consent to provide nutrition in cases of relevantly debilitating injuries and diseases; it is also commonly used (primarily in prisons), with largely the same methods but without patient consent (in which case it receives the name force-feeding), as a method of torture. The degree of pain implicated can be “adjusted” by varying the harshness of the tube insertion, the speed or rate at which feed is supplied, and the nutritional composition of the feed. In any case, the forcible, non-consensual penetration of a second person’s bodily orifice by what is essentially the extended, feet-long appendage of a more powerful person seems to be the act’s torture-qualifying attribute (as well as, for obvious reasons, its frequent comparison with rape). Force-feeding’s variable use can be likened, in this sense, to procedures like foot amputations and dental extractions, which, though therapeutic in certain deployments, can be easily turned into mechanisms of torture. See Ashe (Citation2018a) for a cultural meditation on the use of force-feeding as torture; Miller (Citation2016) for a review of the grasping, impossible experiential accounts of its victims; and the section Intermezzo of this paper for one victim’s poetry-woven description of the unfathomable violence the practice invokes.
26 A dietary reconstruction concluded that my ordinary consumption totalled between 1800 and 2500 calories per day.
27 A witness, the same person who communicated my evident death to the nurse, informed me of this circumstance.
28 Haloperidol is an antipsychotic drug.
29 Miller (Citation2016, 200) collects the impressive testimonies of force-feeding survivors and observers in British, Irish, and South African prisons. Consider this account in the Irish Press (“The Price Sisters” Citation1974): “How many of us would want to live after being forcibly-fed? This is an experience much worse than rape. The emotional assault on the person can be permanently damaging… To restrain, even to punish, is one thing; to torture is something very different. it would seem that those who give instructions for forcible feeding and those who obey should be judged like the torturers of the concentration camps, the rapists of certain Far East campaigns, the perverters of children.”
30 In Italian, the verb cognoscere (related to the English word cognition) means to have experienced something and be personally familiar with it, in a deeper manner than the counterpart sapere, which more simply means to know.
31 In another telling indication of medical (re)inscription, these details are not recorded in the notes; instead, the notes postulate that I ‘dislodged [my] tube’, and, following a (single) reinstallation, I was ‘compliant’.
32 For more on the brutality of force-feeding and the tenure of cruelty regnant in the anorexic internment centre, as I experienced and witnessed these, see Ashe (Citation2018b).
33 Several months after my escape, the doctors ‘released’ me. I later understood why: The NHS keeps a record of escaped psychiatric (or, to the critical eye, psychiatrized) patients. In 2016/2017 – as in all other recent years – the number of ‘unreturned’ escapees is zero (CQC (UK Care Quality Commission) Citation2019).
34 Among the constraints of the journal article as a mode of knowledge making is its severely limiting scope. I do not elaborate here on the mechanics, risks, or consequences of my escape. What these involved certainly ‘tell’ much about the character of psychiatric internment as an operation of sociopolitical control and a bearer of serious social and personal effect. But since those tellings are not essential to the argument I want to make in this essay, I leave them to find (or make) their spaces elsewhere.
35 Many events in this story are incoherent: Why did doctors fail to investigate my in-hospital diarrhoea or weight loss? What happened to the historical records of Crohn’s disease? To where does an errant faecal sample go? Surely they would not starve me for three days … twice …? On the other hand, it is the very incoherence of the particular that gives cohesion to the narrative whole, which turns from one unexplainable, unintelligible event to the next in a manner that approaches logical predictability. In this sense, I seem to have lived these events, in the beautiful distinction drawn by Desjarlais (Citation1994), as both ‘struggling along’ and as ‘experiencing’. As a narrative of utter incoherence, a series of punctual absurdities introduced abruptly from the noplace to the now, it was an episodic, powerfully tactile engagement with an absurd (and hostile) environment. At the same time, the many months of lying-there-suffering created a peculiarly total form of being that could be engaged – experienced – only with an interiority and reflexivity of depths before unknown.