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Public Mental Health and Prevention

Public Mental Health and Prevention Abstract Although employed throughout health-related rhetoric and research today, prevention it is an ambiguous and complicated category when applied to mental and behavioral health. It is analyzed here, along with four ethical issues arising when public health preventative methods and goals involve mental health: (i) age of intervention; (ii) resource priorities between prevention and treatment; (iii) substantive issues in preventive pedagogies and (iv) trade-offs framed by differences of approach. Illustrations include some of the most widespread and ambitious recent preventive models: those aiming to avert subsequent mood disorders of depression and anxiety; those that would curb self-harming (especially suicidal) behavior, and efforts to anticipate and avoid or delay psychosis. To suppose that public mental health can be entirely modeled on other public health programs is mistaken. Instead, it must proceed with awareness of the particular features typifying many mental disorders. These include (i) features of the disorders themselves; (ii) the preliminary nature of scientific knowledge about them; (iii) the contested applicability of traditional disease models to them; (iv) the dearth of established research data available about preventive interventions currently in place or proposed; and (v) the effects of stigma and discrimination on any such interventions. Introduction To suppose that one size fits all, and that public mental health can be entirely modeled on other public health successes of the past, such as the eradication of infectious diseases, would be premature. The central argument in what follows is that applying public health models of prevention to mental and behavioral health demands consideration of features with significant and often far-reaching ethical implications, and that these require close, systematic scrutiny of a kind they have yet to receive.1 The general idea of employing a public health approach to mental health is hard to fault. Its appeal is equally principled and economic: an obligation that reduces disabling suffering and honors the universality of health-related rights, but also, with its emphasis on prevention, promises to curb growing societal and economic costs in terms of morbidity and mortality.2 And the demonstrated prevalence of mental disorder worldwide can evidently be addressed only using the resources of governments and large-scale organizations.3 That said, the application of public health strategies to mental health has yet to receive the degree of systematic, sustained and informed ethical scrutiny it demands, this article hopes to establish. Sophisticated ethical frameworks designed for public health decision-making have thus far been intentionally broad, encompassing all health, bodily, behavioral and mental (Kass, 2001; Childress and Bernheim, 2008; Coggon, 2012; Griffiths and West, 2015; Grill and Dawson, 2015).4 Yet distinctive vulnerabilities, often compounded by stigmatizing social attitudes, are associated with mental disorders; they are incompletely understood by medicine, and unresolved controversy attaches to the social norms governing them, including the very disorder status of such conditions (Harvey et al., 2016; Radden, 2015, 2016; Vilhelmsson et al., 2011; Fulford et al., 2013). At the least, applying public health models to mental health demands consideration of differences such as these, and recognition that such differences may carry distinctive ethical implications, constraints and demands. Prevention is at the center of any discussion about how distinct ethical issues arise when public health methods and goals are applied to mental health (Munoz, 2001; O’Connell et al., 2009). Prevention is a, or perhaps the, central public health principle (Childress and Bernheim, 2008).5 And although employed throughout health-related rhetoric and research, it is an ambiguous and complicated category when applied to mental health. Terminological ambiguities surround it, with ethically significant implications, and these ambiguities make up the first part of this discussion (Part 1). Then in Part 2, four further ethical issues are raised, involving (i) age of intervention; (ii) the evidence base for resource priorities; (iii) substantive issues in preventive pedagogies and (iv) ethically significant trade-offs introduced by differences of approach. This is preliminary work, and rather than a comprehensive review, my aim with (i)–(iv) is to highlight a variety of complexities involved when standard models, useful for much of the rest of medicine, are extended to mental disorders. The analysis of ‘prevention’, together with the role of preventive approaches in relation to (i)–(iv) serves here to illustrate the range and variety of ethical considerations involved in applying preventive approaches to mental health and illness. Part 1: Terminological Ambiguities All prevention seeks to enhance health and reduce or avert ill-health, but in psychiatric medicine, ‘prevention’ is an ambiguous and perhaps overused term. As well as employed to mean reducing the likelihood of developing initial symptoms, it can also mean slowing the return, or reducing the severity, of subsequent episodes beyond the initial one, as in the expression ‘preventing relapse’. The language of ‘primary’ and ‘secondary’ prevention has been introduced to indicate this contrast.6 Understood in terms of disease process, ‘primary’ prevention aims to avert or avoid the incidence of new cases; ‘secondary’ prevention, because it occurs once diagnosable disease is present, might thus be seen as a form of treatment.7 From the perspective of their practical effects, prevention and treatment may be one: preventive measures serving to treat, and treatments to prevent. Conceptually, however, preventing by averting or avoiding disorder is different from—and will, if successful, obviate—treating it. Prevention addresses events or states that have not yet occurred; treatment those that have, when these states or events correspond to the occurrence or presence of diagnosable disorder. Vagaries surrounding diagnosis, so notable with mental ill-health due to its lack of unequivocal verifiability, complicate when prevention ends, and treatment begins, in this arena. First, the outset of disease is rarely easily or conclusively determined with mental disorders, which typically shade into normal states, often anticipated (and afterward trailed) by symptom-like phenomena. The earliest symptoms that precede and auger the full syndrome of the diagnosable condition thus form a halo effect or prodrome. As well as distinguishing ‘secondary’ prevention, occurring once diagnosed or diagnosable disease is present, the term ‘indicated prevention’ recognizes this blurred area of the prodrome lying between the absence and presence of disorder. Prevention that is ‘indicated’ is directed toward high-risk individuals with minimal but detectable signs or symptoms foreshadowing disorder, or possessing biological markers strongly indicating predisposition for it, while not (or not yet) meeting the criteria for diagnosis (Mrazek and Haggerty, 1994; Saxena et al., 2006). Following the usage by which all ‘secondary prevention’ falls on the side of treatment, ‘indicated prevention’ remains anomalous on the prevention–treatment divide. Categories signs and symptoms unusual behavior––“prodrome”––diagnosable disorder interventions primary prevention––“indicated prevention”–– secondary & tertiary prevention (= treatment) Added to these other complexities attaching to prevention, mental disorders are typically episodic rather than continuous in their course, and are also often self-limiting. As in the models guiding the rest of medicine, such disorders are—perhaps misleadingly—taken to be underlying disease entities or processes that persist despite their fluctuating symptom manifestations. More recent models have challenged the appropriateness of this analysis of disease for mental disorder, but it remains the prevailing understanding within psychiatry and public health, along with other features of the parallelism conflating ‘mental’ and ‘physical’ diseases.8 Even when it averts or slows the re-occurrence of a later episode of disorder long separated from the original one, subsequent interventions remain ‘secondary’ prevention—and, since they fall on the other side of the prevention–treatment divide—they are ‘treatment’. Insisting on these separations may seem pedantic, inasmuch as the same regimen might well be offered to the person at each side of the prevention–treatment divide. But these linguistic differences require respect. First, as we will see later (page 7), language like ‘prodromal risk syndrome’ will have a psychological impact on the self-identity of the young person so described. But also, the contrast proves significant when we remember some of the contested ethical issues arising over the nature and care of mental ill-health. A blurred line between prevention and treatment, it has been observed, invites slippage indicative of unwarranted and ethically inappropriate ‘medicalization’ in the form of over-diagnosis and false positives.9 And failure to separate preventive from treatment measures will thus have far-reaching ethical implications for the proper role of medical intervention, science and government. As recent debates about the status of ‘normal sadness’ during the revision of the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders (DSM) illustrate, it will also implicate social norms.10 The contrasts between private and public, free and coerced, are at stake here, so are the appropriate sources from which conceptions of health are to be derived. What can be done? Attempts to regiment the terminology around ‘prevention’ have thus far been unsuccessful. A glance at current research on prevention in psychiatry and public health alike reveals a fairly equal balance between the use of the term to indicate interventions aimed to avert or avoid the initial occurrence of disease, and those covering subsequent (secondary) efforts. With increasing recognition of the significant ethical consequences attaching to the sorts of terminological ambiguity noted above, it must be hoped that at least in within policy and research guiding public mental health, terminological uniformity can be established and respected. Part 2: Additional Ethical Issues Kinds of prevention are often arranged according to target groups rather than (as above) disorder stages. On such a scheme, preventive policies and initiatives are said to be ‘universal’ in targeting a whole population, or ‘selective’ in targeting at-risk sub-populations or individuals, where selective prevention includes the category of individuals, or disorders, that are ‘indicated’.11 The economic efficiency of selective prevention is apparent and noteworthy. In limiting scarce resources to those who need help, it exemplifies the most economically rational arrangement. But both the accuracy of its selection processes and its broad long-term effects in light of stigmatizing attitudes call for further scrutiny. Initiatives employing universal, selective and indicated prevention can each be found today, many of them directed toward the young. The exciting promise of anticipating mental disorder, rather than awaiting its arrival in adulthood, has spurred such efforts. Treating ‘risk of psychosis earlier rather than disorder later’ it has been asserted ‘could open a new era of early detection and intervention’ (Joa et al., 2015, emphasis added). And the same hopeful rhetoric supports preventive efforts to avert or avoid mood disorder and dysfunctional behavior. Again, aside from these promising prospects understood in economic terms, the reduction of disability and disorder would represent an incalculable ethical benefit in terms of reduced suffering. In the complex question of resource allocation, it might even tip the scale toward prevention over treatment. A group of widely used and ambitious recent preventive models will serve as our examples here: those, noted above, aiming to avert subsequent mood disorders of depression and anxiety; those that would curb suicidal behavior, and efforts to anticipate and avoid, or delay, psychosis. Separate issues arising in such applications, discussed in terms of some of the ethical considerations they raise, are (i) age-related interventions; (ii) the evidence base for resource prioritization; (iii) preventive pedagogies; and (iv) trade-offs among approaches. These four serve as examples: they are not the only aspects of preventive programs in need of such attention nor is prevention the only aspect of public mental health calling for ethical analysis of this kind. (i) Childhood and Youth-Related Interventions The age of the recipients of many preventive interventions immediately alerts us to value considerations, some positive. Young subjects would be afforded many years of mental health through these preventive interventions (when effective), an ethical advantage whether measured in terms of health, happiness, productivity or cost saving. Measures such as years lived with disability (disability-adjusted life years) highlight the high societal costs of mental disorders (Ustün et al., 2000). Early prevention in the young offers a compelling vision, comparable to the one that promises lasting and complete cure for other, better understood, and less complicated, illnesses. ‘Behavioral vaccines’ are today proposed against mental disorders in young people, with the aim and expectation of building ‘neuro resilience’: strengthening the resources of the young so that they can grow to be permanently immune from disorder (Rose, 2009). In this ambitious rhetoric, where ‘vaccine’ and ‘immunity’ seem to function not as metaphors, but as exact, literal descriptions (Embry, 2011), the advantage of youthfulness is obvious. Despite this promise, potentially troubling issues also arise with this population.12 Some concern consent, and consent is involved when there is preventative intervention for prodromal conditions targeting a group (early adolescents) in the uncertain area between childhood and full cognitive maturity, where ability to consent may be incomplete (Vitiello, 2008). At the best of times, recent studies illustrate, consent from adult subjects cannot be presumed to reflect complete cognitive grasp of many medical protocols (Faden and Beauchamp, 1986; Flory et al., 2008). Moreover, questions about consent are already especially pertinent with mental disorder, which often temporarily compromises the capabilities enabling voluntary consent.13 Two sorts of vulnerability thus converge, here, indicating the need for heightened ethical awareness. The context where consent is required is often one in which preventive steps are introduced after screening has identified at-risk subjects, employing an individualistic ‘selective’ or ‘indicated’ approach. Nonetheless, it may have some relevance for the more purely public health-focused, ‘universal’ population-wide methods. Typical descriptions of subjects as ‘treatment seeking adolescents (mean age, 15.9)’ emphasize the seemingly voluntary nature of help-seeking by subjects while occluding the age and disability-related factors that might encourage us to demand extra scrutiny over their consent (Cornblatt et al., 2015, emphasis added). With this age group, the ‘seeking’ cannot be uncritically equated with that in independent adults living outside the parental and school environments, for example, since the behavior will often have been instigated by parents, educational mentors or both. We must trust that when these protocols were proposed, suitable attention was paid to establishing that consent was impeded by neither cognitive and affective immaturity nor cognitive disability. Still, further issues arise. Noting the youth of the subjects identified in these studies, it has been stressed that adolescents’ self-concepts are less well formed, so that a label of mental illness has stronger potential to permeate social identity and threaten a sense of normalcy.14 Mental illness effects can be severe among adolescents due to widespread, consistently negative, societal conceptions and anticipated peer rejection, studies suggest.15 Where the individual internalizes negative societal stereotypes, self-stigma results, with its concomitant suffering and dysfunction.16 Age matters here: self-stigma, a higher likelihood of self-labeling and related depression, and more secrecy have been found correlated with the relatively younger age of intervention (Moses, 2009; Clement et al., 2015). Similarly, privacy issues will be more freighted for this age group if, as they seem, adolescents are less likely to understand either the societal attitudes around mental disorder, or their real-world consequences.17 In sum: for all its advantages as an economic, social and ethical strategy, any preventive intervention with children or youth demands additional scrutiny of its costs and benefits, as well as its intended and unintended, and short- and long-term, consequences. They may not be alone sufficient to alter what is decided, but features like those noted above must be factored into decisions to go forward with preventive strategies. (ii) Evidence-Base for Resource Priorities The assignment of resources for preventive strategies whose goal is mental health, as distinct from the care and treatment of disorder, is today recognized as an urgent ethical issue of global importance (World Health Organization, 2001, 2012, 2013; Patel et al., 2013; Patel and Saxena, 2014; Kirmeyer et al., 2016; Radden, 2016). And the basic separation between primary prevention and treatment provides a viable and necessary contrast for many decisions about resource allocation. With a finite set of resources, what proportion should be directed toward the goal of eliminating disorders entirely through efforts at early (primary) prevention, and what toward relieving the symptoms and societal costs of those already suffering from the disorder? The problem here is that answers to such resource allocation questions must be determined under conditions of significant uncertainty in the mental health arena, where full knowledge is still wanting over (i) the nature and course of the disorders involved; (ii) many aspects of their causes; (iii) specific preventive elements involved in interventions; and (iv) the long-term and unintended consequences of such interventions. Given the high cost and pressures around accountability over spending public money, it has been pointed out, the availability of reliable evidence on the cost-effectiveness of each kind of measure is a pressing one (Saxena, 2006: 6). The knowledge base from which to draw this information about mental health-related prevention and promotion is a somewhat contested one. Correlations are cited involving public health measures around maternal health, social and economic well-being, nutrition and literacy, for example, in accounting for improved mental health at the population level.18 Protective and risk factors have been identified (traits such as resilience, problem-solving skills and social and conflict management skills are protective; risk factors include medical illness, parental mental illness and emotional immaturity19) Broad, ‘macro preventive’ measures have been advocated as the preferred approach to mental disorders within public health, where, some insist, environmental risk and protective factors contributing to these disorders are well established, unlike the individualistic idiopathic factors that have been the traditional focus of psychiatry (Saxon et al., 2006). However, among the particular preventive measures currently employed and proposed today that are our examples here, including resilience pedagogies aimed to avert mood disorder and self-harming behaviors, and the identification and monitoring of prodromal symptoms, little completed research is as yet available to direct us over which, and why, (primary) preventive measures are effective (Amitai and Apter, 2012; Mohr et al., 2013; Rees et al., 2015; Sklad et al., 2012; van Zoonen et al., 2014). Research studies designed to establish this have been in place since the first decade of the present century, with the initial results of longitudinal studies only now emerging; moreover many of those studies are small and underpowered (van der Gaag et al., 2013). This late start and consequent lack of fully conclusive findings, together with the relatively paltry allocation of resources to mental health, whether prevention or care, have been attributed to a combination of prejudicial social attitudes and ignorance (Rüsch and Thornicroft, 2014). A related methodological problem has been identified affecting programs to evaluate mental health interventions: interpretations have been made through a binary lens where interventions are either effective or ineffective, when actually a great deal of mental health prevention, promotion and treatment takes place in ‘a grey zone where benefits are less than certain’ (Chandra et al., 2015; Ickowicz and Schachar, 2015). More generally, there is no agreement that the randomized controlled trials (RTCs) associated with evidence-based clinical medicine are the appropriate measure for success in the public health arena, since preventive interventions use multi-component programs in dynamic community settings, where control of all the factors involved would be impossible.20 Suicide prevention pedagogies and mood regulation using digital technologies provide notable examples of the conditions of uncertainty prevailing here. Despite their widespread use, the effectiveness of suicide prevention pedagogies still wants for full empirical support (Hegeri and Wittenburg, 2009; Miller et al., 2009; Bennett et al., 2015). Comparative studies of two suicide prevention initiatives used in North American schools, Signs of Suicide and Yellow Ribbon have been shown to be at best inconclusive and at worst ineffective (Ickowicz and Schachar, 2015). And, while the potential for prevention using digital technologies for the ‘self management’ of mood has been recognized and is believed to hold promise, it, too, is thus far in need of evaluation and assessment (Merry et al., 2011; Proudfoot, 2011; Hayes et al., 2016). To date, similar ambiguities beset studies on the early identification, monitoring and preventive management of psychotic symptoms. Follow-up from the Scandinavian Early Treatment and Intervention in Psychosis study after 2 and 5 years indicated less severe symptoms, fewer cognitive deficits and depressive symptoms, with better general dysfunction and recovery rates.21 Other studies appear to support these general findings, reporting a reduction in annual rates of conversion from prodromal states to psychosis in identified individuals—rates varying by study and with differing criteria and methodology. Some have shown a decelerating trend during the follow-up period with conversion greatest during the first 2 years, and evidence of a general falling trend (Cannon et al., 2008). But one meta-study found a risk of conversion of 18 per cent at follow-up 6 months later, and 36 per cent after 3 years. These are early days, moreover. Even if psychosis is primarily a young person’s disorder, we must wait a decade longer at least before the full picture of these effects can be assessed, since the mean age for research subjects in these studies falls well under 20 years. Added to these ambiguities and lacunae is evidence that both children and adults in the general population experience isolated psychotic phenomena, although they have no contact with psychiatric services—seemingly casting doubt about the explanatory assumptions posited over these interventions (Jones and van Oz, 2001). Rather than potential ‘symptoms’ being indicative of a prodromal phase, it has been pointed out, additional factors such as distress and help-seeking may be the actual markers of risk (Warner, 2005; Broome et al., 2013). We have to be aware of iatrogenic harms, even if unforeseen and unintended: the monitoring and care offered to those with unusual experiences may itself have the paradoxical effect of ‘increasing, rather than decreasing, the rate of transition in an at-risk group…’ (Broome et al., 2013: 791). Thus, in determining the most ethically optimal allocation of resources to be assigned to prevention over treatment, there remains a dearth of suitably unassailable empirical data on which to establish probabilities. In the longer term, such a state of uncertainty can only be remedied through further research, and, although belated, much such research is now ongoing. In the shorter term, what is called for is a candid acknowledgement of this difficulty with the evidence base for resource decisions. (iii) Preventive Pedagogies Universal, selective and indicated preventive approaches each bring their own separate ethical issues, many also particular to the kind of program involved. Public health programs focused on the prevention and reduction of mood disorder and self-harming behavior have tended to be universal in application rather than singling out high-risk groups, and employed school and Internet-based pedagogies. Ethically, universal educational initiatives represent an unimpeachable approach; it is the gold standard for liberal democracies because it is non-coercive. In this respect, as we see, universal programs may always be ethically safer than non-universal programs. Moreover, they are tried and true, due to their use in many other public health efforts. Nonetheless, the substance of these pedagogies, what is taught and how, requires ethical attention.22 Suicide prevention curricula in schools such as those noted earlier are applied to classes or groups, regardless of particular individual or group risk factors.23 Such programs exhibit a range of aims, from the most modest—to establish attitudes (as in the Yellow Ribbon goal of teaching the mantra ‘It’s OK to Ask 4 help’)—to developing traits in (all) children and youth through pedagogies emphasizing cognitive and affective skills. Australia’s beyond blue program illustrates the latter: preventive pedagogies associate depression with maladaptive beliefs and cognitive processing styles, and emphasis is on positive resilient psychosocial adaptation, ‘depression literacy’, self-awareness and training to expunge overly negative cognitive attitudes (www.beyondblue.org.au). Mindfulness-based programs now widely used in schools provide another example. Here, techniques involve focusing attention on the present moment, using an ‘anchor’ such as the breath, and drawing the mind back when it drifts. The overarching goal includes reducing stress and enhancing resilience (Kabat-Zinn, 2003; Kraag et al., 2006; Durlak et al., 2011; Zenner et al., 2014). Such initiatives will always require scrutiny of their substance (Tenglend, 2012). Like all educational campaigns, they must adhere to the strictures governing informative and exhortative communications—avoiding misinformation, intimidation and coercion. Raising awareness about depression and suicide in school curricula illustrates some of the particular ethical pitfalls associated with such pedagogies: a failure to distinguish the difference between correlations and causes that often suggests that depression and suicide are more causally linked than available data warrants24; no room for discussion of the possibility of rational suicide (Dawson and Silva, 2009); ACT (Acknowledge–Care–Tell25) admonitions adopted without discussion of their costs in privacy, loyalty and confidentiality; uncritical acceptance of medical conceptions of disorder that include biological reductionism and unqualified parallelism between mental and physical disorders26; and employing scare tactics in describing the consequences of untreated disorder.27 By employing universal methods, preventive pedagogies aimed at public mental health begin with an unimpeachable ethical advantage over other approaches. They must nonetheless be monitored closely for the substance and style of their messages, which can fail to meet the high standards for accurate, open and non-coercive information exchange associated with liberal ethical ideals. (iv) Ethical Trade-Offs among Approaches In contrast to universal policies and initiatives are those that single out at-risk groups or individuals for special monitoring and preventive regimens. Here, applied to the fuzzy area of prodromal symptoms, the separation between prevention and treatment—and also public health and medicine—becomes problematic.28 While preventative inasmuch as they aim to avert the presence of disorder, these non-universal policies and initiatives are extreme hybrids, employing a combination of public health measures to identify and monitor prodromal symptoms at the same time as individual treatment is also employed on the model of clinical medicine.29 They introduce further ethical concerns when applied within the mental health context because of the special vulnerabilities of the populations involved, the effects of stigma, and the nature of mental health in identify formation, we will see below. Applied to the case of mental health, the concept of prevention is inescapably bound up with the stigmatizing and discriminatory attitudes that have so unfailingly attended this group of disorders. It thus calls for a form of prevention with the fewest negative psychosocial and personal effects on the largest population. Quite apart from positive efforts to reduce stigma and increase societal understanding of these disorders, of the kind involved in public education campaigns, all preventive initiatives need to be evaluated in terms of their likely consequences in reinforcing stereotypes or furthering goals of inclusion. Paradoxically, the interests of advancing public health have been demonstrated to sometimes run counter to those of reducing inequality and exclusion, requiring trade-offs and compromise (Rose, 2001; Viens, 2013). Nonetheless, it remains important to keep these values in sight, and to remember the untold disadvantages resulting from entrenched social attitudes toward mental disorder. Stigma about mental disorder includes negative stereotypes, the resultant negative emotional reactions flowing from those stereotypes and discriminatory behavioral responses. The consequences of this stigma are found in self-stigma, where those with mental illness internalize negative stereotypes, as well as in public attitudes and structural discriminations that intentionally or unintentionally disadvantage those diagnosed with mental illness (Rüsch and Thornicroft, 2014). Such consequences are known to adversely affect the use of mental health-care services and help-seeking behavior (Clement et al., 2014). The interconnected effects of stigma in each of these forms are incalculable, and must be taken into account in relation to the decision to adopt universal over other, more efficient indicated prevention. Regarding the potential role of stigma for indicated prevention among youth at risk for psychosis, for example, some findings suggest that those at greater risk avoid seeking professional help (Rüsch et al., 2014). The role of self-labeling, shame and stress due to stigma in those identified as at risk for psychosis is also considerable (Embry, 2011). If as yet little understood, it must be factored into an ethical assessment of the value of indicated interventions (Rüsch et al., 2014). Attention has rightly been paid to the language of ‘prodrome’, and its cognates in this respect. Those terms imply that the individuals so described ‘are on the path to schizophrenia’ and that the process ‘has already begun’ (Yung, 2011: 915). Alternative language of ‘at risk mental state’ has been recommended, with the rationale that a person presenting with apparent prodromal symptoms ‘may be at increased risk of onset of psychotic disorder within a brief time frame (1-2 years), but that onset is not inevitable’ (A. Yung, 2011: 915). Since risk itself implies ‘not inevitable’, this may be out of the fire into the frying pan, however. These debates about the language emerged from the agreement that a putative condition known as the ‘psychosis risk syndrome’ was not appropriately included in the DSM-5 (Yung et al., 2012).30 And these are forceful arguments. Language matters, and has real psychosocial effects. In indicated preventive initiatives, the psychosocial effects are a function of diagnosis, monitoring and early preventive intervention—not the actual incidence of those who will develop disorder. Their far-reaching effects extend well beyond the individuals accurately identified within the at-risk group, affecting those in the ‘false positive’ category, known as ‘non converters’ because their early symptoms fail to convert to psychosis. The size of this non-converter group is yet to be fully determined. Different studies and different measures have yielded varying data. Thus, using the Yale-Melbourne methodology, studies found a 40–50 per cent annual rate of conversion to psychosis among identified individuals (Yung et al., 1998; Miller et al., 2002); a German study reports a conversion rate of 49 per cent after 9.6 years (Klosterkötter et al., 2001); and a London study found a rate of 50 per cent after 2 years (Mason et al., 2004). The North American Prodromal Longitudinal Study has found a 29 per cent conversion during a follow-up period of 2.5 years (Cannon et al., 2008). A recent review of 31 such studies notes conversion rates between 7–54 per cent with a mean rate of 24 per cent (Simon et al., 2011). If we take this last figure, we are left with 76 per cent of non-converter subjects whose lives and identities will have been affected by their false-positive status. The non-converters have been little studied thus far, and what findings are available are exclusively about the presence and persistence of symptoms (in comparison with converters and with a control group of normal subjects). Overall, one study with a 1- and 2-year follow-up period concludes, the non converters demonstrated significant improvement measured in positive and negative symptoms, and social and role functioning, although they remained at a lower level of functioning than non-psychiatric comparison subjects (Addington et al., 2011). Depending on where normal is pegged—a societal and cultural determination, not a biological one, it should be emphasized—they are either nearly normal or only marginally divergent. Another 2-year longitudinal study of ‘clinical high risk’ (CHR) subjects saw a remission of symptoms in 36 per cent and functional recovery in 30 per cent, concluding that CHR subjects whose symptoms disappeared ‘were more similar to healthy controls in terms of both their baseline and longitudinal symptoms and functioning…’ showing ‘a distinct normative trajectory of both symptoms and psychosocial functioning over time’ (Schlosser et al., 2012). Again, depending on the contours of the relevant norms, this suggests, the CHR subjects were more nearly normal than marginally divergent. To this observation must be added the data from community cohort studies, noted earlier, that have reported the prevalence of psychotic symptoms in the normal population: a 10–20 per cent incidence of at least one psychotic symptom in a lifetime (Yung et al., 2006). Summing up these preliminary data about the non-converters, it is apparent that many early manifestations were closer to insignificant, developmentally related, quirks than ‘prodromal symptoms’. In medicine, as in public health, relative probabilities and risks bring trade-offs, ethical as well as economic. The benefits afforded by their monitoring and early treatment outweigh any negative effects of stigma on the lives and development of the converters, or true positives, it seems to be widely agreed (McGorry et al., 2001; McGorry, 2015; Yang et al., 2010; Yung, 2011; Yung et al., 2012).31 But this leaves unaccounted for the trade-off between those risks and the non-converters, which potentially affects a larger population. These interventions may reduce overall stigma among the group that will exhibit further symptoms and may develop future psychosis, but to again quote from the work cited above: ‘our aim as clinicians and researchers should not be confined to forestalling the development of psychotic symptoms but to also understand and intervene with any possible inadvertent stigmatizing effects brought on by labeling, regardless of whether or not individuals ‘convert’ to subsequent psychosis’ (Yang et al., 2010: 50, emphasis added). Applying social research on stigma to those exhibiting prodromal symptoms, researchers have conceded that any stigma attached to a ‘psychosis risk’ diagnosis has the potential to negatively affect a great number of people, due to internalized stigma (Yang et al., 2010; Yung, 2011). Here, then, our trade-off looks different: the overall stigmatizing effects of indicated preventive interventions are too great to encumber the advantages afforded to the ‘converter’ sub-group. Although it is hampered by the uncertainties around outcomes and the paucity of adequate research on the effects of these preventive measures, this becomes a matter of numbers. Permitting self-stigma in this group seems a high ethical cost for the early interventions that have benefited the converters making up the group calculated (using the mean of a range of percentages) to be merely 24 per cent of the whole. Summing up, then: due to the inexact selection methods and incomplete knowledge base on which selective and indicated prevention are proposed, universal approaches seem to be ethically preferable. In the case of incipient psychosis, at least, until a more sure method has been acquired to refine the group for whom intervention will be valuable, it is arguable that intervention remains ethically unacceptable.32 Conclusion Ambiguities surround the concept of prevention when it is employed in contemporary initiatives involving public mental health, raising far-reaching ethical issues about the proper role of science and government, and who should be the arbiters of health norms. With the advent of policy to employ preventive approaches for public mental health, these considerations require close scrutiny. In addition, other ethical issues arise for public mental health: four were identified here, about age of intervention, resource priorities, substantive issues in preventive pedagogies and differences among preventative approaches. In designing programs for public mental health, policy makers ought to be cognizant of these features, recognizing the risks of ambiguous terminology; the special vulnerabilities attaching to youth; the dearth of evidence on which resource priorities must presently be assigned; the ways preventive pedagogies can fall short of liberal principles; and, with the contrast between ‘universal’ and non-universal approaches, the trade-offs between potentially discriminatory selective measures, or ethically safer, yet less efficient, universal ones. The means and methods of preventive public health hold a promise that is enormous, exciting and positive, but also potentially coercive and ethically problematic. Now that its application to mental health has been recognized, public health must proceed with awareness of the particular features typifying mental disorders, including, although not limited to: (i) aspects of the disorders themselves; (ii) the incomplete nature of scientific knowledge about them; (iii) the contested applicability of traditional disease models to them; (iv) the dearth of established research data available about preventive interventions currently in place, or proposed, for them; and (v) the effects of stigma and discrimination on any intervention. Dangers associated with these and related features require careful attention to the ethical implications of policies and initiatives of the kind described above, and it behooves the champions of public mental health to meet this challenge. Footnotes 1. For brevity, ‘mental’ health and illness include mental and behavioral health and illness. 2. It is also sensible medically, since psychology affects most bodily illnesses (Prince et al., 2007). 3. In view of the high and increasing burden of mental disorders and the recognized limitations in their treatment, it has been observed, ‘the only sustainable method for reducing their burden is prevention’ (Saxena et al., 2006: 12, emphasis added). See also Jorm, 2014; Kohn et al., 2004; Saxena et al., 2014. 4. As used here, public health includes any policy that is government-initiated, affects a total population or some subset of that population and concerns itself with the goal of human health. 5. Prevention is increasingly depicted in terms of the prevention of risk, when risks are future health threats rather than present ill-health (Rose, 1998; McLaughlan, 2014). 6. This language is associated with Mrazek and Haggerty, 1994. Programs and policies designed to avert the initial incidence of disorder have also been named ‘anticipatory’ (Anderson, 2010). 7. A third category of ‘tertiary prevention’ has been introduced to cover further aspects of secondary prevention: relapse prevention and rehabilitation after illness onset (Saxena et al., 2006: 5). Both secondary and tertiary ‘preventions’ are secondary, and are treatment rather than prevention, however, according to the above conceptual contrast. 8. Kendler et al., 2011, and Borsboom, 2008. For alternative models of mental health, see Vilhelmsson et al., 2011. 9. See Rose, 1998; McLaughlan, 2014. 10. See Vilhelmsson et al., 2011. 11. Typical of universal programs is the parent management training initiative The Incredible Years, which provides a behaviorally based intervention that increases positive interactions between child and parent, and aims to improve the child’s problem-solving behavior and social functioning and reduce conduct problems (Webster-Stratton et al., 2003). 12. For the ethical issues arising, see Perring, 2004; Perring and Wells, 2014; Rimmer and Harvey, 2014; Stern et al., 2015; Herbert, et al., 2015. 13. See Radoilska, 2012; Radden, 2015; Roberts, 2002. 14. Wisdom and Green, 2004; Yung et al., 2006. 15. Yang et al., 2010; Corcoran et al., 2005; McGorry et al., 2001. Because diagnosis of schizophrenia will typically be made with young adults who are at the early stages of their identity development, it has been concluded ‘the risk of stigma’s impacts across patients, families, and institutions (including future insurability) arises repeatedly’ (Yang et al., 2010: 43). 16. Corrigan and Watson, 2002; Rüsch et al., 2014. 17. Recognition of these vulnerabilities is evidenced in the efforts taken to protect the privacy of those identified and monitored in these sorts of studies (McGorry et al., 2001; McGorry, 2015). 18. For one example directed toward suicide prevention among the rural poor in Bangladesh, see Chowdhury and Bhuiya, 2001. 19. Saxena et al., 2006: 6–7. 20. For alternatives to RTCs, see Saxena et al., 2006: 6. 21. Melle et al., 2008; Larsen et al., 2011; Hegelstad et al., 2012. 22. For further ethical issues arising over public health education, see Kass, 2001. 23. This universal approach may be achieved through a process of random selection of schools or groups, as in the multicenter, cluster-RCT known as SEYLE (Saving and Empowering Young Lives in Europe) conducted in 10 European Union countries between 2009 and 2010 (Wasserman et al., 2015). 24. The SOS Signs of Suicide Prevention program is a school-based depression awareness and suicide prevention program, using video and training about the signs of depression and self injury, as well as empowering peers to intervene. It is asserted that ‘suicide is not a normal response to stress, but…often occurs as a result of untreated depression’ (www.SOS.org). 25. In the SOS program, students are given specific action steps over how to respond to peers they perceive as at risk of suicide, including ‘help seeking on behalf of friends’. 26. For a challenge to these presuppositions, see Vilhelmsson et al., 2011; Radden, 2015. 27. See online guidance about ‘warning signs’, ‘setbacks’ and seeking help (www.beyondblue.org.au). 28. Some non-universal programs are directed toward risk factors that reside in circumstances outside the individual, as when the children of mentally ill parents are selected for particular, preventive interventions (Saxena et al., 2006). The ethical concerns here will be different, and likely less serious. 29. See Saxena et al., 2006. 30. See also Yang, et al., 2010. 31. 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Public Mental Health and Prevention

Radden, Jennifer
Public Health Ethics , Volume Advance Article (2) – Aug 24, 2017
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Oxford University Press
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© The Author 2017. Published by Oxford University Press. Available online at www.phe.oxfordjournals.org
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Abstract

Abstract Although employed throughout health-related rhetoric and research today, prevention it is an ambiguous and complicated category when applied to mental and behavioral health. It is analyzed here, along with four ethical issues arising when public health preventative methods and goals involve mental health: (i) age of intervention; (ii) resource priorities between prevention and treatment; (iii) substantive issues in preventive pedagogies and (iv) trade-offs framed by differences of approach. Illustrations include some of the most widespread and ambitious recent preventive models: those aiming to avert subsequent mood disorders of depression and anxiety; those that would curb self-harming (especially suicidal) behavior, and efforts to anticipate and avoid or delay psychosis. To suppose that public mental health can be entirely modeled on other public health programs is mistaken. Instead, it must proceed with awareness of the particular features typifying many mental disorders. These include (i) features of the disorders themselves; (ii) the preliminary nature of scientific knowledge about them; (iii) the contested applicability of traditional disease models to them; (iv) the dearth of established research data available about preventive interventions currently in place or proposed; and (v) the effects of stigma and discrimination on any such interventions. Introduction To suppose that one size fits all, and that public mental health can be entirely modeled on other public health successes of the past, such as the eradication of infectious diseases, would be premature. The central argument in what follows is that applying public health models of prevention to mental and behavioral health demands consideration of features with significant and often far-reaching ethical implications, and that these require close, systematic scrutiny of a kind they have yet to receive.1 The general idea of employing a public health approach to mental health is hard to fault. Its appeal is equally principled and economic: an obligation that reduces disabling suffering and honors the universality of health-related rights, but also, with its emphasis on prevention, promises to curb growing societal and economic costs in terms of morbidity and mortality.2 And the demonstrated prevalence of mental disorder worldwide can evidently be addressed only using the resources of governments and large-scale organizations.3 That said, the application of public health strategies to mental health has yet to receive the degree of systematic, sustained and informed ethical scrutiny it demands, this article hopes to establish. Sophisticated ethical frameworks designed for public health decision-making have thus far been intentionally broad, encompassing all health, bodily, behavioral and mental (Kass, 2001; Childress and Bernheim, 2008; Coggon, 2012; Griffiths and West, 2015; Grill and Dawson, 2015).4 Yet distinctive vulnerabilities, often compounded by stigmatizing social attitudes, are associated with mental disorders; they are incompletely understood by medicine, and unresolved controversy attaches to the social norms governing them, including the very disorder status of such conditions (Harvey et al., 2016; Radden, 2015, 2016; Vilhelmsson et al., 2011; Fulford et al., 2013). At the least, applying public health models to mental health demands consideration of differences such as these, and recognition that such differences may carry distinctive ethical implications, constraints and demands. Prevention is at the center of any discussion about how distinct ethical issues arise when public health methods and goals are applied to mental health (Munoz, 2001; O’Connell et al., 2009). Prevention is a, or perhaps the, central public health principle (Childress and Bernheim, 2008).5 And although employed throughout health-related rhetoric and research, it is an ambiguous and complicated category when applied to mental health. Terminological ambiguities surround it, with ethically significant implications, and these ambiguities make up the first part of this discussion (Part 1). Then in Part 2, four further ethical issues are raised, involving (i) age of intervention; (ii) the evidence base for resource priorities; (iii) substantive issues in preventive pedagogies and (iv) ethically significant trade-offs introduced by differences of approach. This is preliminary work, and rather than a comprehensive review, my aim with (i)–(iv) is to highlight a variety of complexities involved when standard models, useful for much of the rest of medicine, are extended to mental disorders. The analysis of ‘prevention’, together with the role of preventive approaches in relation to (i)–(iv) serves here to illustrate the range and variety of ethical considerations involved in applying preventive approaches to mental health and illness. Part 1: Terminological Ambiguities All prevention seeks to enhance health and reduce or avert ill-health, but in psychiatric medicine, ‘prevention’ is an ambiguous and perhaps overused term. As well as employed to mean reducing the likelihood of developing initial symptoms, it can also mean slowing the return, or reducing the severity, of subsequent episodes beyond the initial one, as in the expression ‘preventing relapse’. The language of ‘primary’ and ‘secondary’ prevention has been introduced to indicate this contrast.6 Understood in terms of disease process, ‘primary’ prevention aims to avert or avoid the incidence of new cases; ‘secondary’ prevention, because it occurs once diagnosable disease is present, might thus be seen as a form of treatment.7 From the perspective of their practical effects, prevention and treatment may be one: preventive measures serving to treat, and treatments to prevent. Conceptually, however, preventing by averting or avoiding disorder is different from—and will, if successful, obviate—treating it. Prevention addresses events or states that have not yet occurred; treatment those that have, when these states or events correspond to the occurrence or presence of diagnosable disorder. Vagaries surrounding diagnosis, so notable with mental ill-health due to its lack of unequivocal verifiability, complicate when prevention ends, and treatment begins, in this arena. First, the outset of disease is rarely easily or conclusively determined with mental disorders, which typically shade into normal states, often anticipated (and afterward trailed) by symptom-like phenomena. The earliest symptoms that precede and auger the full syndrome of the diagnosable condition thus form a halo effect or prodrome. As well as distinguishing ‘secondary’ prevention, occurring once diagnosed or diagnosable disease is present, the term ‘indicated prevention’ recognizes this blurred area of the prodrome lying between the absence and presence of disorder. Prevention that is ‘indicated’ is directed toward high-risk individuals with minimal but detectable signs or symptoms foreshadowing disorder, or possessing biological markers strongly indicating predisposition for it, while not (or not yet) meeting the criteria for diagnosis (Mrazek and Haggerty, 1994; Saxena et al., 2006). Following the usage by which all ‘secondary prevention’ falls on the side of treatment, ‘indicated prevention’ remains anomalous on the prevention–treatment divide. Categories signs and symptoms unusual behavior––“prodrome”––diagnosable disorder interventions primary prevention––“indicated prevention”–– secondary & tertiary prevention (= treatment) Added to these other complexities attaching to prevention, mental disorders are typically episodic rather than continuous in their course, and are also often self-limiting. As in the models guiding the rest of medicine, such disorders are—perhaps misleadingly—taken to be underlying disease entities or processes that persist despite their fluctuating symptom manifestations. More recent models have challenged the appropriateness of this analysis of disease for mental disorder, but it remains the prevailing understanding within psychiatry and public health, along with other features of the parallelism conflating ‘mental’ and ‘physical’ diseases.8 Even when it averts or slows the re-occurrence of a later episode of disorder long separated from the original one, subsequent interventions remain ‘secondary’ prevention—and, since they fall on the other side of the prevention–treatment divide—they are ‘treatment’. Insisting on these separations may seem pedantic, inasmuch as the same regimen might well be offered to the person at each side of the prevention–treatment divide. But these linguistic differences require respect. First, as we will see later (page 7), language like ‘prodromal risk syndrome’ will have a psychological impact on the self-identity of the young person so described. But also, the contrast proves significant when we remember some of the contested ethical issues arising over the nature and care of mental ill-health. A blurred line between prevention and treatment, it has been observed, invites slippage indicative of unwarranted and ethically inappropriate ‘medicalization’ in the form of over-diagnosis and false positives.9 And failure to separate preventive from treatment measures will thus have far-reaching ethical implications for the proper role of medical intervention, science and government. As recent debates about the status of ‘normal sadness’ during the revision of the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders (DSM) illustrate, it will also implicate social norms.10 The contrasts between private and public, free and coerced, are at stake here, so are the appropriate sources from which conceptions of health are to be derived. What can be done? Attempts to regiment the terminology around ‘prevention’ have thus far been unsuccessful. A glance at current research on prevention in psychiatry and public health alike reveals a fairly equal balance between the use of the term to indicate interventions aimed to avert or avoid the initial occurrence of disease, and those covering subsequent (secondary) efforts. With increasing recognition of the significant ethical consequences attaching to the sorts of terminological ambiguity noted above, it must be hoped that at least in within policy and research guiding public mental health, terminological uniformity can be established and respected. Part 2: Additional Ethical Issues Kinds of prevention are often arranged according to target groups rather than (as above) disorder stages. On such a scheme, preventive policies and initiatives are said to be ‘universal’ in targeting a whole population, or ‘selective’ in targeting at-risk sub-populations or individuals, where selective prevention includes the category of individuals, or disorders, that are ‘indicated’.11 The economic efficiency of selective prevention is apparent and noteworthy. In limiting scarce resources to those who need help, it exemplifies the most economically rational arrangement. But both the accuracy of its selection processes and its broad long-term effects in light of stigmatizing attitudes call for further scrutiny. Initiatives employing universal, selective and indicated prevention can each be found today, many of them directed toward the young. The exciting promise of anticipating mental disorder, rather than awaiting its arrival in adulthood, has spurred such efforts. Treating ‘risk of psychosis earlier rather than disorder later’ it has been asserted ‘could open a new era of early detection and intervention’ (Joa et al., 2015, emphasis added). And the same hopeful rhetoric supports preventive efforts to avert or avoid mood disorder and dysfunctional behavior. Again, aside from these promising prospects understood in economic terms, the reduction of disability and disorder would represent an incalculable ethical benefit in terms of reduced suffering. In the complex question of resource allocation, it might even tip the scale toward prevention over treatment. A group of widely used and ambitious recent preventive models will serve as our examples here: those, noted above, aiming to avert subsequent mood disorders of depression and anxiety; those that would curb suicidal behavior, and efforts to anticipate and avoid, or delay, psychosis. Separate issues arising in such applications, discussed in terms of some of the ethical considerations they raise, are (i) age-related interventions; (ii) the evidence base for resource prioritization; (iii) preventive pedagogies; and (iv) trade-offs among approaches. These four serve as examples: they are not the only aspects of preventive programs in need of such attention nor is prevention the only aspect of public mental health calling for ethical analysis of this kind. (i) Childhood and Youth-Related Interventions The age of the recipients of many preventive interventions immediately alerts us to value considerations, some positive. Young subjects would be afforded many years of mental health through these preventive interventions (when effective), an ethical advantage whether measured in terms of health, happiness, productivity or cost saving. Measures such as years lived with disability (disability-adjusted life years) highlight the high societal costs of mental disorders (Ustün et al., 2000). Early prevention in the young offers a compelling vision, comparable to the one that promises lasting and complete cure for other, better understood, and less complicated, illnesses. ‘Behavioral vaccines’ are today proposed against mental disorders in young people, with the aim and expectation of building ‘neuro resilience’: strengthening the resources of the young so that they can grow to be permanently immune from disorder (Rose, 2009). In this ambitious rhetoric, where ‘vaccine’ and ‘immunity’ seem to function not as metaphors, but as exact, literal descriptions (Embry, 2011), the advantage of youthfulness is obvious. Despite this promise, potentially troubling issues also arise with this population.12 Some concern consent, and consent is involved when there is preventative intervention for prodromal conditions targeting a group (early adolescents) in the uncertain area between childhood and full cognitive maturity, where ability to consent may be incomplete (Vitiello, 2008). At the best of times, recent studies illustrate, consent from adult subjects cannot be presumed to reflect complete cognitive grasp of many medical protocols (Faden and Beauchamp, 1986; Flory et al., 2008). Moreover, questions about consent are already especially pertinent with mental disorder, which often temporarily compromises the capabilities enabling voluntary consent.13 Two sorts of vulnerability thus converge, here, indicating the need for heightened ethical awareness. The context where consent is required is often one in which preventive steps are introduced after screening has identified at-risk subjects, employing an individualistic ‘selective’ or ‘indicated’ approach. Nonetheless, it may have some relevance for the more purely public health-focused, ‘universal’ population-wide methods. Typical descriptions of subjects as ‘treatment seeking adolescents (mean age, 15.9)’ emphasize the seemingly voluntary nature of help-seeking by subjects while occluding the age and disability-related factors that might encourage us to demand extra scrutiny over their consent (Cornblatt et al., 2015, emphasis added). With this age group, the ‘seeking’ cannot be uncritically equated with that in independent adults living outside the parental and school environments, for example, since the behavior will often have been instigated by parents, educational mentors or both. We must trust that when these protocols were proposed, suitable attention was paid to establishing that consent was impeded by neither cognitive and affective immaturity nor cognitive disability. Still, further issues arise. Noting the youth of the subjects identified in these studies, it has been stressed that adolescents’ self-concepts are less well formed, so that a label of mental illness has stronger potential to permeate social identity and threaten a sense of normalcy.14 Mental illness effects can be severe among adolescents due to widespread, consistently negative, societal conceptions and anticipated peer rejection, studies suggest.15 Where the individual internalizes negative societal stereotypes, self-stigma results, with its concomitant suffering and dysfunction.16 Age matters here: self-stigma, a higher likelihood of self-labeling and related depression, and more secrecy have been found correlated with the relatively younger age of intervention (Moses, 2009; Clement et al., 2015). Similarly, privacy issues will be more freighted for this age group if, as they seem, adolescents are less likely to understand either the societal attitudes around mental disorder, or their real-world consequences.17 In sum: for all its advantages as an economic, social and ethical strategy, any preventive intervention with children or youth demands additional scrutiny of its costs and benefits, as well as its intended and unintended, and short- and long-term, consequences. They may not be alone sufficient to alter what is decided, but features like those noted above must be factored into decisions to go forward with preventive strategies. (ii) Evidence-Base for Resource Priorities The assignment of resources for preventive strategies whose goal is mental health, as distinct from the care and treatment of disorder, is today recognized as an urgent ethical issue of global importance (World Health Organization, 2001, 2012, 2013; Patel et al., 2013; Patel and Saxena, 2014; Kirmeyer et al., 2016; Radden, 2016). And the basic separation between primary prevention and treatment provides a viable and necessary contrast for many decisions about resource allocation. With a finite set of resources, what proportion should be directed toward the goal of eliminating disorders entirely through efforts at early (primary) prevention, and what toward relieving the symptoms and societal costs of those already suffering from the disorder? The problem here is that answers to such resource allocation questions must be determined under conditions of significant uncertainty in the mental health arena, where full knowledge is still wanting over (i) the nature and course of the disorders involved; (ii) many aspects of their causes; (iii) specific preventive elements involved in interventions; and (iv) the long-term and unintended consequences of such interventions. Given the high cost and pressures around accountability over spending public money, it has been pointed out, the availability of reliable evidence on the cost-effectiveness of each kind of measure is a pressing one (Saxena, 2006: 6). The knowledge base from which to draw this information about mental health-related prevention and promotion is a somewhat contested one. Correlations are cited involving public health measures around maternal health, social and economic well-being, nutrition and literacy, for example, in accounting for improved mental health at the population level.18 Protective and risk factors have been identified (traits such as resilience, problem-solving skills and social and conflict management skills are protective; risk factors include medical illness, parental mental illness and emotional immaturity19) Broad, ‘macro preventive’ measures have been advocated as the preferred approach to mental disorders within public health, where, some insist, environmental risk and protective factors contributing to these disorders are well established, unlike the individualistic idiopathic factors that have been the traditional focus of psychiatry (Saxon et al., 2006). However, among the particular preventive measures currently employed and proposed today that are our examples here, including resilience pedagogies aimed to avert mood disorder and self-harming behaviors, and the identification and monitoring of prodromal symptoms, little completed research is as yet available to direct us over which, and why, (primary) preventive measures are effective (Amitai and Apter, 2012; Mohr et al., 2013; Rees et al., 2015; Sklad et al., 2012; van Zoonen et al., 2014). Research studies designed to establish this have been in place since the first decade of the present century, with the initial results of longitudinal studies only now emerging; moreover many of those studies are small and underpowered (van der Gaag et al., 2013). This late start and consequent lack of fully conclusive findings, together with the relatively paltry allocation of resources to mental health, whether prevention or care, have been attributed to a combination of prejudicial social attitudes and ignorance (Rüsch and Thornicroft, 2014). A related methodological problem has been identified affecting programs to evaluate mental health interventions: interpretations have been made through a binary lens where interventions are either effective or ineffective, when actually a great deal of mental health prevention, promotion and treatment takes place in ‘a grey zone where benefits are less than certain’ (Chandra et al., 2015; Ickowicz and Schachar, 2015). More generally, there is no agreement that the randomized controlled trials (RTCs) associated with evidence-based clinical medicine are the appropriate measure for success in the public health arena, since preventive interventions use multi-component programs in dynamic community settings, where control of all the factors involved would be impossible.20 Suicide prevention pedagogies and mood regulation using digital technologies provide notable examples of the conditions of uncertainty prevailing here. Despite their widespread use, the effectiveness of suicide prevention pedagogies still wants for full empirical support (Hegeri and Wittenburg, 2009; Miller et al., 2009; Bennett et al., 2015). Comparative studies of two suicide prevention initiatives used in North American schools, Signs of Suicide and Yellow Ribbon have been shown to be at best inconclusive and at worst ineffective (Ickowicz and Schachar, 2015). And, while the potential for prevention using digital technologies for the ‘self management’ of mood has been recognized and is believed to hold promise, it, too, is thus far in need of evaluation and assessment (Merry et al., 2011; Proudfoot, 2011; Hayes et al., 2016). To date, similar ambiguities beset studies on the early identification, monitoring and preventive management of psychotic symptoms. Follow-up from the Scandinavian Early Treatment and Intervention in Psychosis study after 2 and 5 years indicated less severe symptoms, fewer cognitive deficits and depressive symptoms, with better general dysfunction and recovery rates.21 Other studies appear to support these general findings, reporting a reduction in annual rates of conversion from prodromal states to psychosis in identified individuals—rates varying by study and with differing criteria and methodology. Some have shown a decelerating trend during the follow-up period with conversion greatest during the first 2 years, and evidence of a general falling trend (Cannon et al., 2008). But one meta-study found a risk of conversion of 18 per cent at follow-up 6 months later, and 36 per cent after 3 years. These are early days, moreover. Even if psychosis is primarily a young person’s disorder, we must wait a decade longer at least before the full picture of these effects can be assessed, since the mean age for research subjects in these studies falls well under 20 years. Added to these ambiguities and lacunae is evidence that both children and adults in the general population experience isolated psychotic phenomena, although they have no contact with psychiatric services—seemingly casting doubt about the explanatory assumptions posited over these interventions (Jones and van Oz, 2001). Rather than potential ‘symptoms’ being indicative of a prodromal phase, it has been pointed out, additional factors such as distress and help-seeking may be the actual markers of risk (Warner, 2005; Broome et al., 2013). We have to be aware of iatrogenic harms, even if unforeseen and unintended: the monitoring and care offered to those with unusual experiences may itself have the paradoxical effect of ‘increasing, rather than decreasing, the rate of transition in an at-risk group…’ (Broome et al., 2013: 791). Thus, in determining the most ethically optimal allocation of resources to be assigned to prevention over treatment, there remains a dearth of suitably unassailable empirical data on which to establish probabilities. In the longer term, such a state of uncertainty can only be remedied through further research, and, although belated, much such research is now ongoing. In the shorter term, what is called for is a candid acknowledgement of this difficulty with the evidence base for resource decisions. (iii) Preventive Pedagogies Universal, selective and indicated preventive approaches each bring their own separate ethical issues, many also particular to the kind of program involved. Public health programs focused on the prevention and reduction of mood disorder and self-harming behavior have tended to be universal in application rather than singling out high-risk groups, and employed school and Internet-based pedagogies. Ethically, universal educational initiatives represent an unimpeachable approach; it is the gold standard for liberal democracies because it is non-coercive. In this respect, as we see, universal programs may always be ethically safer than non-universal programs. Moreover, they are tried and true, due to their use in many other public health efforts. Nonetheless, the substance of these pedagogies, what is taught and how, requires ethical attention.22 Suicide prevention curricula in schools such as those noted earlier are applied to classes or groups, regardless of particular individual or group risk factors.23 Such programs exhibit a range of aims, from the most modest—to establish attitudes (as in the Yellow Ribbon goal of teaching the mantra ‘It’s OK to Ask 4 help’)—to developing traits in (all) children and youth through pedagogies emphasizing cognitive and affective skills. Australia’s beyond blue program illustrates the latter: preventive pedagogies associate depression with maladaptive beliefs and cognitive processing styles, and emphasis is on positive resilient psychosocial adaptation, ‘depression literacy’, self-awareness and training to expunge overly negative cognitive attitudes (www.beyondblue.org.au). Mindfulness-based programs now widely used in schools provide another example. Here, techniques involve focusing attention on the present moment, using an ‘anchor’ such as the breath, and drawing the mind back when it drifts. The overarching goal includes reducing stress and enhancing resilience (Kabat-Zinn, 2003; Kraag et al., 2006; Durlak et al., 2011; Zenner et al., 2014). Such initiatives will always require scrutiny of their substance (Tenglend, 2012). Like all educational campaigns, they must adhere to the strictures governing informative and exhortative communications—avoiding misinformation, intimidation and coercion. Raising awareness about depression and suicide in school curricula illustrates some of the particular ethical pitfalls associated with such pedagogies: a failure to distinguish the difference between correlations and causes that often suggests that depression and suicide are more causally linked than available data warrants24; no room for discussion of the possibility of rational suicide (Dawson and Silva, 2009); ACT (Acknowledge–Care–Tell25) admonitions adopted without discussion of their costs in privacy, loyalty and confidentiality; uncritical acceptance of medical conceptions of disorder that include biological reductionism and unqualified parallelism between mental and physical disorders26; and employing scare tactics in describing the consequences of untreated disorder.27 By employing universal methods, preventive pedagogies aimed at public mental health begin with an unimpeachable ethical advantage over other approaches. They must nonetheless be monitored closely for the substance and style of their messages, which can fail to meet the high standards for accurate, open and non-coercive information exchange associated with liberal ethical ideals. (iv) Ethical Trade-Offs among Approaches In contrast to universal policies and initiatives are those that single out at-risk groups or individuals for special monitoring and preventive regimens. Here, applied to the fuzzy area of prodromal symptoms, the separation between prevention and treatment—and also public health and medicine—becomes problematic.28 While preventative inasmuch as they aim to avert the presence of disorder, these non-universal policies and initiatives are extreme hybrids, employing a combination of public health measures to identify and monitor prodromal symptoms at the same time as individual treatment is also employed on the model of clinical medicine.29 They introduce further ethical concerns when applied within the mental health context because of the special vulnerabilities of the populations involved, the effects of stigma, and the nature of mental health in identify formation, we will see below. Applied to the case of mental health, the concept of prevention is inescapably bound up with the stigmatizing and discriminatory attitudes that have so unfailingly attended this group of disorders. It thus calls for a form of prevention with the fewest negative psychosocial and personal effects on the largest population. Quite apart from positive efforts to reduce stigma and increase societal understanding of these disorders, of the kind involved in public education campaigns, all preventive initiatives need to be evaluated in terms of their likely consequences in reinforcing stereotypes or furthering goals of inclusion. Paradoxically, the interests of advancing public health have been demonstrated to sometimes run counter to those of reducing inequality and exclusion, requiring trade-offs and compromise (Rose, 2001; Viens, 2013). Nonetheless, it remains important to keep these values in sight, and to remember the untold disadvantages resulting from entrenched social attitudes toward mental disorder. Stigma about mental disorder includes negative stereotypes, the resultant negative emotional reactions flowing from those stereotypes and discriminatory behavioral responses. The consequences of this stigma are found in self-stigma, where those with mental illness internalize negative stereotypes, as well as in public attitudes and structural discriminations that intentionally or unintentionally disadvantage those diagnosed with mental illness (Rüsch and Thornicroft, 2014). Such consequences are known to adversely affect the use of mental health-care services and help-seeking behavior (Clement et al., 2014). The interconnected effects of stigma in each of these forms are incalculable, and must be taken into account in relation to the decision to adopt universal over other, more efficient indicated prevention. Regarding the potential role of stigma for indicated prevention among youth at risk for psychosis, for example, some findings suggest that those at greater risk avoid seeking professional help (Rüsch et al., 2014). The role of self-labeling, shame and stress due to stigma in those identified as at risk for psychosis is also considerable (Embry, 2011). If as yet little understood, it must be factored into an ethical assessment of the value of indicated interventions (Rüsch et al., 2014). Attention has rightly been paid to the language of ‘prodrome’, and its cognates in this respect. Those terms imply that the individuals so described ‘are on the path to schizophrenia’ and that the process ‘has already begun’ (Yung, 2011: 915). Alternative language of ‘at risk mental state’ has been recommended, with the rationale that a person presenting with apparent prodromal symptoms ‘may be at increased risk of onset of psychotic disorder within a brief time frame (1-2 years), but that onset is not inevitable’ (A. Yung, 2011: 915). Since risk itself implies ‘not inevitable’, this may be out of the fire into the frying pan, however. These debates about the language emerged from the agreement that a putative condition known as the ‘psychosis risk syndrome’ was not appropriately included in the DSM-5 (Yung et al., 2012).30 And these are forceful arguments. Language matters, and has real psychosocial effects. In indicated preventive initiatives, the psychosocial effects are a function of diagnosis, monitoring and early preventive intervention—not the actual incidence of those who will develop disorder. Their far-reaching effects extend well beyond the individuals accurately identified within the at-risk group, affecting those in the ‘false positive’ category, known as ‘non converters’ because their early symptoms fail to convert to psychosis. The size of this non-converter group is yet to be fully determined. Different studies and different measures have yielded varying data. Thus, using the Yale-Melbourne methodology, studies found a 40–50 per cent annual rate of conversion to psychosis among identified individuals (Yung et al., 1998; Miller et al., 2002); a German study reports a conversion rate of 49 per cent after 9.6 years (Klosterkötter et al., 2001); and a London study found a rate of 50 per cent after 2 years (Mason et al., 2004). The North American Prodromal Longitudinal Study has found a 29 per cent conversion during a follow-up period of 2.5 years (Cannon et al., 2008). A recent review of 31 such studies notes conversion rates between 7–54 per cent with a mean rate of 24 per cent (Simon et al., 2011). If we take this last figure, we are left with 76 per cent of non-converter subjects whose lives and identities will have been affected by their false-positive status. The non-converters have been little studied thus far, and what findings are available are exclusively about the presence and persistence of symptoms (in comparison with converters and with a control group of normal subjects). Overall, one study with a 1- and 2-year follow-up period concludes, the non converters demonstrated significant improvement measured in positive and negative symptoms, and social and role functioning, although they remained at a lower level of functioning than non-psychiatric comparison subjects (Addington et al., 2011). Depending on where normal is pegged—a societal and cultural determination, not a biological one, it should be emphasized—they are either nearly normal or only marginally divergent. Another 2-year longitudinal study of ‘clinical high risk’ (CHR) subjects saw a remission of symptoms in 36 per cent and functional recovery in 30 per cent, concluding that CHR subjects whose symptoms disappeared ‘were more similar to healthy controls in terms of both their baseline and longitudinal symptoms and functioning…’ showing ‘a distinct normative trajectory of both symptoms and psychosocial functioning over time’ (Schlosser et al., 2012). Again, depending on the contours of the relevant norms, this suggests, the CHR subjects were more nearly normal than marginally divergent. To this observation must be added the data from community cohort studies, noted earlier, that have reported the prevalence of psychotic symptoms in the normal population: a 10–20 per cent incidence of at least one psychotic symptom in a lifetime (Yung et al., 2006). Summing up these preliminary data about the non-converters, it is apparent that many early manifestations were closer to insignificant, developmentally related, quirks than ‘prodromal symptoms’. In medicine, as in public health, relative probabilities and risks bring trade-offs, ethical as well as economic. The benefits afforded by their monitoring and early treatment outweigh any negative effects of stigma on the lives and development of the converters, or true positives, it seems to be widely agreed (McGorry et al., 2001; McGorry, 2015; Yang et al., 2010; Yung, 2011; Yung et al., 2012).31 But this leaves unaccounted for the trade-off between those risks and the non-converters, which potentially affects a larger population. These interventions may reduce overall stigma among the group that will exhibit further symptoms and may develop future psychosis, but to again quote from the work cited above: ‘our aim as clinicians and researchers should not be confined to forestalling the development of psychotic symptoms but to also understand and intervene with any possible inadvertent stigmatizing effects brought on by labeling, regardless of whether or not individuals ‘convert’ to subsequent psychosis’ (Yang et al., 2010: 50, emphasis added). Applying social research on stigma to those exhibiting prodromal symptoms, researchers have conceded that any stigma attached to a ‘psychosis risk’ diagnosis has the potential to negatively affect a great number of people, due to internalized stigma (Yang et al., 2010; Yung, 2011). Here, then, our trade-off looks different: the overall stigmatizing effects of indicated preventive interventions are too great to encumber the advantages afforded to the ‘converter’ sub-group. Although it is hampered by the uncertainties around outcomes and the paucity of adequate research on the effects of these preventive measures, this becomes a matter of numbers. Permitting self-stigma in this group seems a high ethical cost for the early interventions that have benefited the converters making up the group calculated (using the mean of a range of percentages) to be merely 24 per cent of the whole. Summing up, then: due to the inexact selection methods and incomplete knowledge base on which selective and indicated prevention are proposed, universal approaches seem to be ethically preferable. In the case of incipient psychosis, at least, until a more sure method has been acquired to refine the group for whom intervention will be valuable, it is arguable that intervention remains ethically unacceptable.32 Conclusion Ambiguities surround the concept of prevention when it is employed in contemporary initiatives involving public mental health, raising far-reaching ethical issues about the proper role of science and government, and who should be the arbiters of health norms. With the advent of policy to employ preventive approaches for public mental health, these considerations require close scrutiny. In addition, other ethical issues arise for public mental health: four were identified here, about age of intervention, resource priorities, substantive issues in preventive pedagogies and differences among preventative approaches. In designing programs for public mental health, policy makers ought to be cognizant of these features, recognizing the risks of ambiguous terminology; the special vulnerabilities attaching to youth; the dearth of evidence on which resource priorities must presently be assigned; the ways preventive pedagogies can fall short of liberal principles; and, with the contrast between ‘universal’ and non-universal approaches, the trade-offs between potentially discriminatory selective measures, or ethically safer, yet less efficient, universal ones. The means and methods of preventive public health hold a promise that is enormous, exciting and positive, but also potentially coercive and ethically problematic. Now that its application to mental health has been recognized, public health must proceed with awareness of the particular features typifying mental disorders, including, although not limited to: (i) aspects of the disorders themselves; (ii) the incomplete nature of scientific knowledge about them; (iii) the contested applicability of traditional disease models to them; (iv) the dearth of established research data available about preventive interventions currently in place, or proposed, for them; and (v) the effects of stigma and discrimination on any intervention. Dangers associated with these and related features require careful attention to the ethical implications of policies and initiatives of the kind described above, and it behooves the champions of public mental health to meet this challenge. Footnotes 1. For brevity, ‘mental’ health and illness include mental and behavioral health and illness. 2. It is also sensible medically, since psychology affects most bodily illnesses (Prince et al., 2007). 3. In view of the high and increasing burden of mental disorders and the recognized limitations in their treatment, it has been observed, ‘the only sustainable method for reducing their burden is prevention’ (Saxena et al., 2006: 12, emphasis added). See also Jorm, 2014; Kohn et al., 2004; Saxena et al., 2014. 4. As used here, public health includes any policy that is government-initiated, affects a total population or some subset of that population and concerns itself with the goal of human health. 5. Prevention is increasingly depicted in terms of the prevention of risk, when risks are future health threats rather than present ill-health (Rose, 1998; McLaughlan, 2014). 6. This language is associated with Mrazek and Haggerty, 1994. Programs and policies designed to avert the initial incidence of disorder have also been named ‘anticipatory’ (Anderson, 2010). 7. A third category of ‘tertiary prevention’ has been introduced to cover further aspects of secondary prevention: relapse prevention and rehabilitation after illness onset (Saxena et al., 2006: 5). Both secondary and tertiary ‘preventions’ are secondary, and are treatment rather than prevention, however, according to the above conceptual contrast. 8. Kendler et al., 2011, and Borsboom, 2008. For alternative models of mental health, see Vilhelmsson et al., 2011. 9. See Rose, 1998; McLaughlan, 2014. 10. See Vilhelmsson et al., 2011. 11. Typical of universal programs is the parent management training initiative The Incredible Years, which provides a behaviorally based intervention that increases positive interactions between child and parent, and aims to improve the child’s problem-solving behavior and social functioning and reduce conduct problems (Webster-Stratton et al., 2003). 12. For the ethical issues arising, see Perring, 2004; Perring and Wells, 2014; Rimmer and Harvey, 2014; Stern et al., 2015; Herbert, et al., 2015. 13. See Radoilska, 2012; Radden, 2015; Roberts, 2002. 14. Wisdom and Green, 2004; Yung et al., 2006. 15. Yang et al., 2010; Corcoran et al., 2005; McGorry et al., 2001. Because diagnosis of schizophrenia will typically be made with young adults who are at the early stages of their identity development, it has been concluded ‘the risk of stigma’s impacts across patients, families, and institutions (including future insurability) arises repeatedly’ (Yang et al., 2010: 43). 16. Corrigan and Watson, 2002; Rüsch et al., 2014. 17. Recognition of these vulnerabilities is evidenced in the efforts taken to protect the privacy of those identified and monitored in these sorts of studies (McGorry et al., 2001; McGorry, 2015). 18. For one example directed toward suicide prevention among the rural poor in Bangladesh, see Chowdhury and Bhuiya, 2001. 19. Saxena et al., 2006: 6–7. 20. For alternatives to RTCs, see Saxena et al., 2006: 6. 21. Melle et al., 2008; Larsen et al., 2011; Hegelstad et al., 2012. 22. For further ethical issues arising over public health education, see Kass, 2001. 23. This universal approach may be achieved through a process of random selection of schools or groups, as in the multicenter, cluster-RCT known as SEYLE (Saving and Empowering Young Lives in Europe) conducted in 10 European Union countries between 2009 and 2010 (Wasserman et al., 2015). 24. The SOS Signs of Suicide Prevention program is a school-based depression awareness and suicide prevention program, using video and training about the signs of depression and self injury, as well as empowering peers to intervene. It is asserted that ‘suicide is not a normal response to stress, but…often occurs as a result of untreated depression’ (www.SOS.org). 25. In the SOS program, students are given specific action steps over how to respond to peers they perceive as at risk of suicide, including ‘help seeking on behalf of friends’. 26. For a challenge to these presuppositions, see Vilhelmsson et al., 2011; Radden, 2015. 27. See online guidance about ‘warning signs’, ‘setbacks’ and seeking help (www.beyondblue.org.au). 28. Some non-universal programs are directed toward risk factors that reside in circumstances outside the individual, as when the children of mentally ill parents are selected for particular, preventive interventions (Saxena et al., 2006). The ethical concerns here will be different, and likely less serious. 29. See Saxena et al., 2006. 30. See also Yang, et al., 2010. 31. 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Public Health Ethics – Oxford University Press

Published: Aug 24, 2017

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