The medical model and other constructions of self-neglect
WILLIAM LAUDER MEd RMN RCNT RNT DipEd DipN
Department of Nursing and Midwifery
University of Stirling (Highland Campus)
Old Perth Road
Inverness IV2 3FG
Patients who neglect their personal hygiene and household cleanliness are frequently encountered by nurses. Self-neglect is usually understood within the parameters of the medical model, with its need to objectify and categorise. The medicalisation of self-neglect obscures the fact that patients and professionals may have different ideas on what is and what is not self-neglect. This paper explores how the medical construction of self-neglect has come to dominate the discourse and will also explore other possible ways of understanding self-neglect.
The first reported empirical study of self-neglect was undertaken by Macmillan and Shaw (1966). This study developed from the researchers’ intuitive recognition that a group of patients existed whose symptoms were sufficiently similar to see them grouped together as suffering the same illness. Macmillan and Shaw provide a description of the putative syndrome, which they tentatively labelled ´Senile Breakdown´
The usual picture is that of an old woman living alone, though men and married couples suffering the condition are also found. She, her garments, her possessions, and her house are filthy. She may be verminous and there may be
faeces and pools of urine on the floor (p 1032).
This picture of self-neglect has had a major impact on our understanding of self-neglect since it was first published. In-spite of the fact that there are a number of major methodological flaws in this study, notably the use of a non-probability sampling methods, this study came to be regarded as having defined the syndrome. This paper sets out to challenge the notion that there is one way of understanding self-neglect and will explore how the medical construction of self-neglect has come to dominate at the expense of other constructions of self-neglect.
In Europe the medical model has been the dominant force in the development of a professional construct of self-neglect. This construction has operated from the assumption that there is a discrete self-neglect medical syndrome which can be objectified and measured. Self- neglect as a medical syndrome has variously been labelled as the Diogenes Syndrome, senile squalor, senile self-neglect and the Social Breakdown Syndrome (Reifler 1996).
The problem of who defines self-neglect is a conceptual and practical issue of some importance. Johnson and Adams (1996) argue that objective and subjective perceptions of self-neglect may vary between different professional groups and between professional groups and those who they categorise as self-neglecting. Possibly an even more fundamental challenge is the claim that there is little evidence to support the existence of a self-neglect syndrome (Johnson and Adams 1996, Reifler 1996).
The Legitimation of Self-Neglect as a Medical Syndrome
It is necessary to explore the way in which, in-spite of limited supporting evidence, self-neglect as a medical syndrome has come to be the predominant perspective. Berger and Luckman (1966) argue that legitimisation is a key process in the acceptance of a particular way of constituting reality, in this instance self-neglect. Legitimation of self-neglect as a medical syndrome has been supported by the use of language and symbols, the impact of everyday explanations, explicit theory of self-neglect, and through the worldview which underpins this theory.
Legitimation of Self-Neglect: Language and Symbols
The medicalisation of self-neglect has been developed and sustained by the use of language and images. Language is embedded in a discourse and does not exist in a social vacuum (Lupton 1994). Foucault informs us that language is rooted in the dominant ideas within a discourse. Turner (1995) believes that a Foucaultian analysis would claim that
..we know, or see, what our language permits, because we can never naively apprehend or know reality outside our language (p11).
The terms self-neglect, social breakdown and Diogenes Syndrome are not neutral but convey a set of meanings. These meanings reflect the values of those who employ such terms, namely health and social care professionals. For example the language used to describe people who are described as self-neglecting such as ´lack of shame´ conveys a sense of moral judgement as much as it describes a clinical symptom. The medical nomenclature of self-neglect and the language used to describe its key characteristics, such as syllogomania, desperate state of domestic disorder, troublesome behaviour, and refusal of treatment, give the impression of revealing some underlying reality. In fact such language may actually define and create a reality which does not exist outside the language used to create it (Foucault 1980).
The way in which we come to conceptualise a disease involves the use of visual images as well as written text (Lupton 1994, Gilman 1988). Gilman argues that these representations eventually become the disease anthropomorphisised. This process may be seen in the self-neglect literature when MacMillan and Shaw’s (1966) original description of ´self-neglect´ came to be seen as the syndrome itself. This description has been further entrenched through visual representations of self-neglect published in the literature (Clark 1980).
The language and visual imagery of self-neglect is disseminated across the academic and clinical community in many ways, the principle of which is the professional journal. Foucault (1980) described how knowledge/power is exercised to limit and control a discourse through hierarchical observation. Hierarchical observation is the process of sustaining power by institutionalising a particular branch of knowledge. This is, in part, achieved through professional journals which play a key role in legitimising a particular construction as the truth. Thus, some professional journals, with their own limited conventions on truth, science, and language may be instrumental in portraying self-neglect in a specific way. This may in part explain the self-sustaining and mutually reinforcing style of the literature on self-neglect. There are nearly as many reviews of the literature as there are original research studies. The self-sustaining quality of the literature can be seen in the fact that many reviews cite the same literature, and having cited this literature, find themselves cited in future articles. This is problematic as ideas become established as fact rather than as tentative and provisional, as most must be regarded in the light of the lack of empirical data.
This process may be evident in the recycling of the Clark et al (1975) suggestion that self-neglect is causally-related to an underling personality disorder. Gannon and O’Boyle (1992) claim that personality problems do exist in serious self-neglect, and they cite Cybulska and Rucinski (1986) as support for this claim. In the Cybulska and Rucinski (1986) article no new evidence on the relationship between personality and self-neglect is presented. In fact Cybulska and Rucinski cite the original Clark et al (1975) article as evidence of such a relationship. This somewhat incestuous and circular process in which authors cite a small number of articles, and find themselves cited in future articles, is clearly evident in the self-neglect literature. Thus tentative, intuitive ideas become received wisdom and are regarded as givens. Consequently our understanding of self-neglect has not developed as much as it would have if mainstream ideas had been exposed to a critical analysis, the results of which may have been new insights and the corresponding advance in our response to self-neglect. It must be acknowledged, though, that authors such as Johnstone and Adams (1996) have recently begun to articulate such a challenge.
If we can move beyond the technical meaning of language to the values which inform that language we can expose the value-ladeness inherent in the medicalisation of self-neglect. This realisation is a necessary prerequisite if nurses are to seriously challenge their approach to such people, as if we are aware of the fact that we respond to people based on value judgements we are more likely to effect change in our responses to them than if we regard a particular construction of self-neglect as an unquestionable truth.
Legitimation of Self-Neglect: The Impact of Everyday Experience
Foucault (1980) has explored the way in which medicine has increasingly exercised power over many aspects of our daily lives. Medicine in general and medical psychiatry especially are not simply concerned with pathophysiological states but have extended their professional gaze into everyday aspects of life such as cleanliness, eating, sleeping and eating (Foucault 1980). This may have had, and continue to have, a relevance to behaviours thought central to self-neglect.
Self-neglect is inextricably bound up with notions of cleanliness and hygiene. Hygiene and cleanliness are, in the context of a self-neglect syndrome, no longer matters of personal preferences and values but are symptomatic of a disorder. Foucault (1980) places this debate in a historical context when describing how in the 18 th century matters of hygiene became enmeshed in systems of social control. Thus medicine came to have power over personal hygiene and was given authority to control and dominate hygiene practises and engage in authoritarian medical interventions. The type of authoritarian medical intervention described by Foucault (1980) has its modern day manifestation in the statutory legislation which allows medical practitioners to forcibly hospitalise people who are self-neglecting.
Lupton (1994) argues that body cleanliness is central to the discourse in contemporary notions of disease and that modern day attitudes to cleanliness have become more pervasive and visible. These attitudes, in the opinion of Lupton, border on the obsessive and can be seen in the nightly bombardment with television images of bright blue chemicals being released into the lavatory each time we flush. The metaphors of war and conflict are commonly used to describe the battle between cleanliness and dirt. One consequence of this discourse is that people who are ´dirty´, ´unclean´, and ´unhygienic´ in western cultures are to be regarded as disordered and unhealthy. Cleanliness and dirt appear to be almost pathognomic of self-neglect. It can be suggested that values in this respect may differ between cultures and socio-economic group within the same culture. In some groups such values may be sufficiently different that self-neglect as understood in western medicine may not exist.
A second consequence of placing cleanliness at the core of a self-neglect syndrome is that psychosocial dimensions of the patient experience have been largely overlooked. People who self-neglect may have problems developing relationships and it could be the case that this dimension is of more significance to the patient than the more observable aspects of this phenomena.
Legitimation of Self-Neglect: The Medical Model
The fourth type of legitimation identified by Berger and Luckman (1966) is the use of an explicit theoretical framework and the processes and procedures which emerge from this. Johnstone and Adams (1996) believe that the medical model is the dominant construction of self-neglect. Within a discourse bounded by the medical model, self-neglect will inevitably be constructed within the parameters set by this model. The principle method through which the medical model manifests itself is the diagnostic process. Turner (1995) claims diagnoses are the most important source of professional legitimation as they represent the promotion of a professional agenda to the public at large. Rogers (1989) describes how medicine turns ideas and constructions into ´real´ things by a process of reification
Reification is the process of taking a complex and amorphous mixture of observed events, experiences, accounts and ideas, conceptually turning them (or having them turned) into a ´thing´ and then giving that ´thing´ a name (e.g. anorexia, pre-menstrual tension and post-traumatic shock syndrome (p19).
Rogers (1989) describes how many medical diagnoses are not made by reference to objective operational definitions but by reference to value judgements. The diagnostic process in general and the diagnosis of a self-neglect syndrome specifically is centred around the issue of normality. In the case of a medical syndrome of self-neglect the issue is what is to be regarded as normal or abnormal levels of cleanliness and hygiene? Thus self-neglect exists when medical and nursing professionals judge that individuals do not conform to expected behavioural norms with respect to cleanliness and hygiene.
Labelling someone as suffering from a self-neglect syndrome is a normative process in which value judgements are made about an individual’s behaviour relative to some internalised norm. There is an internal contradiction operating here as on the one hand medicine espouses objectivity and operational definitions but on the other hand when faced with the complexity of human behaviour in the swamplands of practice they resort to normative judgements.
It is possible that other theoretical frameworks could be usefully employed to understand self-neglect. Lauder (1997) in a study using Orem’s Theory of Self-Neglect as a theoretical framework has shown that patients who self-neglect have relatively low levels of self-care agency. Self-care agency is the capacity to make decisions and then engage in self-care actions. Nevertheless Lauder (1998) has also shown that Orem’s theory has many limitations in understanding other aspects of self-neglect.
Worldviews as a Source of Legitimation
The fifth and final way in which the medical construction of self-neglect is legitimised is through the worldview that underpins the medical model (Berger and Luckman 1966). The medical model may be dependent on a positivist worldview for legitimation. Positivism proposes that phenomena, such as self-neglect, are real and can be objectively measured and explained in a general theory. Many authors’ and theorists’ do not fully explicate or even acknowledge the philosophical assumptions underpinning their position with respect to self-neglect. Nevertheless the literature on self-neglect is almost exclusively rooted in the positivist tradition and therefore any discussion of self-neglect must explore the consequences of a debate which is framed with this worldview.
If positivism is to be the basis for our understanding of self-neglect it follows that when self-neglecters believe that their lifestyle is deliberately chosen and is to their liking they can still be diagnosed as suffering from a medical syndrome. This is justified on the basis that the individual displays a number of behaviours which match a pre-defined list of behaviours characteristic of a category of disease. These categories have been prescribed by professional groups, most notably the medical profession.
The protests by some patients that this is how they want to live can be disregarded as at best a subjective and misguided opinion and at worst as being evidence of how disturbed this individual is in the first place.
Clark (1980) alludes to the subjectivity of patients’ views, as opposed to the assumed objectivity of the professional view, when he claims that individuals who self-neglect have a propensity to distort reality. The presumption being that reality is not defined by the self-neglecter but by others. Self-neglect from a positivistic viewpoint, with its need to uncover general immutable laws, transcends individual perception, historical forces and cultural values. The core of self-neglect has an existence independent of context and must necessarily be a universal experience which is essentially similar in all cultures.
A Practical Science of Self-Neglect
This notion of an objective and measurable reality which can be captured in the language of science has been challenged by postmodernism. Post-modernism explicitly rejects the existence of grand narratives such as the medical model. Post-modernism proposes that understanding a phenomena is the process of making explicit a number of explanatory systems (Rogers 1989). According to Turner (1995) post-modern epistemology claims that constructions of disease are products of an historically and culturally located discourse. Rogers (1989) makes a similar point when arguing that illness is a not simply a physical or psychological fact but is a process of social definition.
Turner (1995) proposes that disease is an open text amenable to a variety of interpretations. This dictum, if applied to self-neglect, would suggest that claims of the medical model to having access to the truth about self-neglect must be rejected. In fact post-modernists would argue that this explanatory system is no more true that the perspectives of people who are thought to self-neglect. Consequently a search for a universal theory of self-neglect may not be possible and what we should in fact be attempting to do is to understanding self-neglect in its historical, cultural and interpersonal context.
Toulmin (1990) asserts that the problem facing the academic community is how to reconcile 16 th century humanism with 17 th century empiricism. In effect reconciling the universal with the particular, uncertainty with certainty and practice with abstractions. Toulmin admonishes us to rediscover the Aristotelian quest for the practical and the humanist desire for uncertainty by finding room for the practical, local and contextual in our theorising. There are important consequences for understanding self-neglect which emerge from Toulmin’s position. The use of theoretical frameworks, such as the medical model, imposes constraints on our understanding of self-neglect in that they create the objects of their own making. In effect if one begins with an a priori view that self-neglect is a medical syndrome that is what we are likely to find. Thus we impose limits on the possible range of constructions of, and solutions to, what is a very common human experience.
Another consequence of seeking The theory of self-neglect is that in the drive for universality researchers seek to uncover patterns and similarities across cases of self-neglect. This, as Toulmin suggests, means that elements of the self-neglect experience of individuals which do not fit into the general pattern tend to be omitted. Diversity is sacrificed on the alter of uniformity. A post-modern interpretation would reject the notion of an all-encompassing theory of self-neglect with its assumptions of uniformity and objectivity. In the place a post-modern perspective of self-neglect would propose that in place self-neglect is essentially a fragmented phenomenon. We should seek to understand the concrete and particulars of self-neglect as it appears to different groups. Sarup (1993) summarises this position in the axiom ´big stories are bad, little stories are good´. Sarup offers the metaphor of Montage to explain this position
Montage presupposes fragmentation of reality; it breaks through the appearance of totality and calls attention to the fact that it is made up of reality fragments
Toulmin (1990) makes the similar point that generalisation is problematic but deviates from the usual post-modernist position adopted by Sarup when he suggests that a synthesis of the polarities of general and particular is needed
The Platonist drive towards universal theory (must), thus, reach a balance with an Aristotelian attention to the times and places, circumstances and occasions of biological events in which their sheer variety creates practical problems.... (Toulmin p181).
In the context of self-neglect it is necessary then to explore both similarities across cases whilst recognising the essentially unique and personal experience of each single case of self-neglect. Thus it is necessary to utilise research methods which allows each case to be explored singly whilst seeking any patterns which may be of practical use for nurses and medical practitioners.
The need to rediscover the practical and timely solution to the problems faced when dealing with self-neglect, however this is defined, may overcome the conceptual problem of the self-neglect continuum. This suggests that in the light of the contextual nature of self-neglect and how it is constructed and experienced by participants it is not necessary nor possible to find a cut-off point to allow judgements as to when poor hygiene changes from personal lifestyle preference to self-neglect. This judgement can only be made by participants in the context of each individual’s life. Thus what may be described by the nurse as a serious case of self-neglect may, in the light of the ´self-neglecters´ rejection of this label and his wish to continue to lead this lifestyle, be a ‘less serious’ case than another case which objectively appears less dramatic but which causes the ´self-neglecter´ some distress. The synthesis of the universal and particular aspects of self-neglect reconciles both and allows for the professional judgements needed when faced with responding to a complex human experience such as self-neglect.
Self-neglect should not be regarded as an abstraction which is amenable to be captured in a single theory nor be measured by some operational definition. It is a concrete human experience which must by understood within a particular historical context with its own cultural values and interpersonal practices. An acceptance that this phenomenon may be understood in radically different ways by patients and professionals and between different groups of professionals has important implications. The first task facing the nurse is to uncover the constructions held by the patient and enter into a process of mutually agreeing what the problem is and what goals need to be set. Nurses require to see past the label and deal with this problem in its human terms in a way which is sensitive to the values held by the patient. It is not surprising that there seems to be a consensus in the medical literature that this group of patient is very difficult to treat. If patients do not see themselves as having a self-neglect syndrome why should they accept treatment. It is by entering into an engagement with few preconceptions and a willingness to accept alternative ways of seeing behaviour that nurses will be able to successfully respond to this problem.
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