Tuesday, 5 February 2019

What influence do value judgements have in making in evaluating disease status?



Introduction
Szasz claimed mental illness is an expression of ethical disapproval of a behaviour involving a covert negative moral evaluation (Szasz (1960): 114-115). Examining psychiatry’s role in the abuse of political prisoners by diagnosing them as having schizophrenia with ‘reformist delusions’ it was suggested that both physical and mental disease concepts are evaluative but that the role of values is greater for mental illness (Fulford et al (1993): 806-807) because values underlying designation of states as physical disease are said to be more commonly shared and thus less problematic for physical illness compared to mental illness (Fulford in Boch & Chodoff (1991): 80-82).

Defining disease and illness in a biologically based value-free manner still contained implicit value judgements ((Boorse (1975) & Kendell (1975)). More recent propositions have dealt with the issue of values in different ways. Wakefield acknowledged the role of values in judging if a factual dysfunction is harmful and should qualify as a disorder (Wakefield (1992): 374)). This proposition also relied on value judgments to decide if there was a supposedly factual value-free dysfunction present (Murphy & Woolfolk (2000): 245-7). Fulford presented the argument that it was identifying illness that was crucial based on a ‘failure of doing’ (Fulford (1989)) and that disease was what was associated with producing illness (Fulford in Bloch & Chodoff (1991): 85). The values associated with the designation of illness were described as medical values as opposed to moral or aesthetic values (Fulford (1989): 109)) though to me the distinction is not clear.

The aim of this essay is to discuss how commonly values are involved in evaluating if states are diseases.

How often do different groups of people agree on the disease status of problems?
A survey in Finland of a randomly selected representative sample of 3000 laypeople, 1500 doctors, 1500 nurses and all 200 MPs asked the respondents about 60 relevant states (chosen by expert consensus) were asked if they regarded these states as diseases (Tikkinen et al (2012)) on a Likert scale with 5-points from strongly agree to strongly disagree. The paper’s definition of disease was not given explicitly but was implied by an additional question - the state should entitle the affected person to tax-funded healthcare. The states covered a wide variety of conditions including those commonly thought of as physical and mental health conditions. Strongly agree and agree answers will be combined into a single agreement category. Answers for some conditions will be discussed to highlight the potential role of values in deciding if states are diseases including discussions if the conditions could be viewed as clear dysfunctions (Wakefield (1992) or failures of doing (Fulford (1989) or biological disadvantages (Kendell (1975)).

Doctors were more likely to regard states as diseases but there were some exceptions – for example age-related muscle loss was regarded as a disease by 50% of lay people and MPs and 40% of nurses but just over 20% of doctors. Mental health conditions were more likely to be regarded as diseases by doctors than other groups. I will discuss some of the results in further details to discover if value judgements influenced disagreements as to disease status

Anorexia nervosa is a severe mental health condition - with high rates of mortality (Chesney et al (2014)) and in women amenorrhea reducing fertility meeting Kendell’s criteria of biological disadvantage (Kendell (1975): 310) – was regarded as a disease by only just over 60% of lay people and MPs but over 90% of doctors and 80% of nurses. Given the combination of increased mortality, physical complications and reduced fertility and the markedly different associated thoughts/ behaviour it is interesting that over a third of lay and MP respondents do not regard anorexia as a disease (there is higher agreement for depression even though depression’s mortality is much less than that for anorexia (Chesney et al (2014)). Thinking about possible reasons for this discrepancy between lay/ MP respondents and doctors it may be that the general public and MPs may not be fully informed about anorexia’s high mortality or what people in this state experience in terms of distress and impaired functioning. Another possibility may be that anorexia involves a disorder of eating – a disorder of appetite (similar to appetites in the broad sense – see later discussion of substances and sexual functioning). In this case it is a restriction not perceived over-indulgence. An additional possibility is the association with thinness which may be regarded as a physical feature conveying sexual attractiveness and that in some people anorexia is regarded as trying to achieve a desirable feature, a form of vanity that is regarded negatively and undeserving of disease status. In terms of evolutionary dysfunctions (Wakefield (1992): 383) that may be causing anorexia it is possible there may be functions to suppress appetite in terms of food shortage or to adopt body shapes regarded as attractive to potential mates but this does not explain to me why these functions become so awry to produce the severe distress of anorexia nervosa and its associated biological disadvantage. In any case even if these evolutionary functions have become dysfunctional their nature – of perceived wilful suppression of appetites when unnecessary to achieve thinness - may be subject of moral judgement as vanity and not deserving of the exemptions of criticism of such behaviour conferred by disease status (Boorse (1975): 61) which is a value judgement (Wakefield (1992): 383-4).

Alcoholism is regarded as a disease by about 50% of lay people and over 60% of doctors; drug addiction by about one third of lay people and just under 60% of doctors and smoking as disease by under 10% of all four groups. Nicotine is a highly addictive substance so alcoholism, drug addiction and smoking can all be regarded as forms of addiction caused by a biological substance with biological effects contributing to addiction. Alcohol problems have been defined as a clinical syndrome to allow further research into psychobiological causes (Edwards & Gross (1976)). The concept involves the biological consequences of alcohol – such as increasing tolerance to its effects and the withdrawal signs/ symptoms – interacting with psychological phenomenon such as negative conditioning promoting using the substance to ameliorate unpleasant withdrawals to create the constellation of increased use with subsequent problems.  This has formed the basis of other addiction syndromes. Tolerance and withdrawal can both viewed as a result of evolutionary functions (Wakefield (1992): 383) – tolerance is mediated by the body reacting to increasing exposure to a bioactive compound by increasing its ability to metabolise the compound and reduce its pharmacodynamic effect on the body; withdrawal represents what happens when the body is no longer being exposed to this bioactive compound when it may have reduced production of its own compounds that have similar effects and/or reduced sensitivity of systems to this compound’s effects. These bodily responses can be seen as evolutionary functions to maintain homeostasis. Psychological mechanisms – such as conditioning- can be viewed similarly as evolutionary functions to increase an organism’s adaptation to its micro-environment. Therefore addiction to a biological substance inducing tolerance and withdrawal could be seen to involve dysfunction and therefore achieve part of the criteria for disease status (Wakefield (1992): 383).Smoking, alcoholism and drug addiction are associated with increased mortality though smoking to a lesser extent than severe forms of alcoholism and drug addiction (Chesney et al (2014)) and could be seen as biological disadvantages conferring disease status (Kendell (1975): 310).

Both smoking and alcohol are legal as are some drugs that can be addictive for certain purposes (e.g. opioids for pain relief). Smoking, even with passive smoking, may be regarded as less harmful to other people than alcoholism and drug addiction with their associations with crime, aggressiveness and other antisocial behaviours. The marked difference for smoking compared to alcohol/drugs may reflect a reluctance to confer disease status on smokers for several possible reasons: unwillingness to medicalise a much more prevalent group than alcoholism or drug addiction or that people are not ‘sold’ on a disease model of addiction that applies logically to smoking. Doctors have similar rates for regarding alcoholism and drug addiction as diseases but lay people are less likely to confer disease status on drug addiction than alcoholism – this may reflect an unwillingness to confer disease status on drug addiction (and entitlement to tax funded health care) which may reflect that they personally disapprove of drug use compared to use of alcohol.

It seems likely to me that the difference in assigning disease status to these different addictions represents differences in personal attitudes to the substances involved in the particular addiction. These different attitudes are likely to be influenced by personal values. These values may be influenced by various factors such as experience with their own or others with addiction, training and education (such as doctors taught the medical model of addiction as exemplified by the alcohol syndrome), the media, cultural attitudes and so forth. It may also be that “familiarity breeds contempt” – people have experience of wanting to use and actually have used cigarettes, alcohol and illegal drugs. Their personal experience of unproblematic use and desire for these substances makes it harder for them to see why people should have problematic use and cannot stop using it to that degree and may impute personal failing as a reason why people become addicted. The public may be more likely to see drug addiction as immoral as it involves either illegal substances or legal substances for limited purposes being abused for pleasure. This appetite for pleasure out of control seems to attract varying degrees of moral censure and disbarring from disease status depending on the perception of the substance’s legality or perversion of purpose. Doctors may be indoctrinated by their training to regard it as a disease. They may also see people in their clinic with highly problematic use and regard their experience as different from non-problematic use – it may appear “syndromal” to them or even if an excess on a dimension with everyday use (“quantity has a quality of its own”).  

Gambling addiction was regarded as a disease by 25% of lay people, 50% of doctors and about 40% of MPs and nurses. Gambling addiction as its’ name suggests has adopted the substance addiction model for problematic gambling behaviours in the absence of a biological substance. This absence of a biological substance means that the addiction model relies on dysfunctional psychological functions (including impulsivity) so may be less likely to meet evolutionary dysfunction criteria for disease status. To my knowledge there is less evidence for increased mortality for gambling addiction than the other addictions mentioned above and it would be hard to demonstrate reduced fertility that was not socially mediated so is unlikely to meet biological disadvantage disease status either (Kendell (1975): 310).. Gambling may be regarded as more harmful to others in the gambler’s social network than smoking due to its financial effects. In Finland gambling is legal but under a government monopoly (alcohol was also strictly regulated at the time of the survey).  There may be a reluctance, particularly amongst lay people but also about half of doctors, to regard a problematic behaviour as a disease in the absence of a biological substance causing an effect on the brain leading to tolerance and withdrawal effects. This may reflect values indicating reluctance to assign disease status in the absence of biological causes for a behaviour that is regarded as an appetitive disturbance or indulgence. Gambling may be regarded as an immoral indulgence not deserving of disease status.

Erectile dysfunction is regarded as a disease by less than 50% of all groups. Erectile dysfunction presumably reduces chances of reproduction thus meeting Kendell’s biological disadvantage criteria for a disease (Kendell (1975): 310). The dysfunction of erectile function would meet criteria for a failure of doing - of difficulty in performing penetration (Fulford (1989)) and a dysfunction in the sense of having difficulty in its’ evolutionary function of penetration (Wakefield (1992):310). Despite this, less than half of respondents regard it as a disease which makes little sense according to me especially as doctors are likely to view states as diseases (Tikkinen et al, 2012). Possible reasons could include that it is often regarded as a psychological problem caused by anxiety and that as such is regarded a nervous problem not a disease. This ignores it is often associated with medical conditions such as diabetes or as a medication/ surgical side-effect or can be caused directly by disease processes such as vascular disease and is coded in ICD10 both as a mental and a urological disorder. Another possibility could be that it is a state that affects sexual functioning it is regarded as an appetitive problem, a dysfunction of sexual enjoyment/ activity that may influence people’s value judgement of it. This may lead them to viewing this state not as a disease entitled to tax funded healthcare but a problem of lifestyle or desired state (the desire linked to activities either regarded as base or immoral).

There is inconsistency around the allocation of disease status to adult-onset diabetes (over 80% all groups), elevated blood pressure (70% or more in all groups) and elevated cholesterol (about 50-60% in all groups). These conditions are all aspects of metabolic syndrome and share many features such as a complex aetiology involving multiple genes of small effect (often shared between these different conditions) interacting with environmental factors such as exercise, diet and alcohol intake. Given these are different aspects of a broader condition why the difference in rates of according disease status to them? They share many common factors with an evolutionary function – blood pressure to circulate blood and maintain renal function, cholesterol and glucose metabolism to provide immediate energy whilst also storing energy and providing building blocks to produce important molecules such as steroids. The dysfunction element arises from the consequences of these functions (at high levels of blood pressure for instance) to lead to a variety of processes, for example atheroma, with several adverse consequences like cardiovascular disease (Wakefield (1992):310). The resultant increased mortality would meet biological disadvantage criteria for disease (Kendell (1975): 310). It may be that the lower rates of elevated cholesterol being regarded as a disease is because of its closer association with diet in people’s minds and specifically overeating of sinful foods like cream cakes and English breakfasts that is it attracts negative moral judgements affecting people’s willingness to accord it disease status.

Finally, few considered dental caries a disease (about 30-40%) except over 60% of doctors despite being a clear disease with resultant pain and even loss of teeth indicating dysfunction (Wakefield (1992):310) but perhaps not increased mortality/ reduced fertility of biological disadvantage (Kendell (1975): 310). The association of dental caries with indulgently eating sweets and chocolates may induce negative moral judgements or views about not restricting appetites.


How do moral judgements affect decisions about disease status?
It is important to note that this survey asked different groups of people (the public, doctors, nurses, MPs) whether states should be conceived as diseases and entitled to tax funded health care but their opinion could be wrong (Wakefield (1992): 377). These different groups are likely to have had different levels of knowledge of the different conditions and under the pressure of completing the survey their thinking processes in deciding whether to allocate disease status may have been different than if they had time to research the condition and form reasoned judgments. 

The allocation of disease status to various conditions is often to my mind illogical. Hypertension, type 2 diabetes and elevated cholesterol are similar conditions yet elevated cholesterol is less likely to be regarded as disease. Erectile dysfunction is often not regarded as a disease despite often being a result of pathological processes and medication effects. Nicotine addiction despite involving a highly addictive substance is rarely considered a disease. Alcohol addiction is more likely to be considered a disease than drug addiction. Dental caries is often not considered a disease.

The reasons why conditions which seem to have legitimate claims to disease are disregarded as such seems to rely on value judgements about their perceived nature. Anorexia may not be regarded as a disease – despite its high mortality for a mental health condition and a diagnostic biomarker which is rare for mental health conditions – because it is a disorder of eating, an appetite, and possibly because it may be regarded as a form of vanity with its association with thinness.  

The association of cholesterol with eating and in particular eating foods regarded as sinful (high fat foods) may explain why elevated cholesterol is less likely to be regarded as a disease than type 2 diabetes and hypertension. It may be more likely to regarded as a moral failing – not restricting oneself from eating badly, a poorly regulated appetite.

If one regards all addiction to a biological substance – whatever the substance – as a similar phenomenon the varying answers about disease status of alcohol, drugs and nicotine are confusing. The different answers for alcohol and drugs may reflect greater moral disapproval on the use of drugs as compared to alcohol and subsequent reluctance to extend disease status and tax-funded help to people with drug addiction problems. For nicotine another value judgment may apply – since smoking is so common so everyday there may be a value judgement that ubiquitous phenomenon should not be regarded as diseases and especially if involve pleasure-seeking activities with smoking as a vice.  In gambling addiction the link to vice and pleasure seeking is more obvious in the absence of a biological substance.

All these conditions described do not have associated differences of structure/ anatomy or physiological causative processes or mechanisms. Addiction may have induced nerve receptor changes as a result of the biological addiction but this is as a result of the substances involved not a cause of the problems. Yet even where seem obvious differences in structure or physiological process and biological disadvantages such as erectile dysfunction a minority regard it as disease possibly because it’s a dysfunction of a sexual activity and hence linked to appetite and morality.

Turning to what may be described as mental illness what are the relevant points? The frequent absence of biomarkers and differences in structure/ processes leading to the clinical features can weaken the claim to disease status especially if the value issues outlined later casts further doubt. Of course one can point out that these differences in structure/ process only counts as a disease marker AFTER we have already decided that the condition is a disease (Fulford (1989). If a biological difference in structure or process was found in all people with the condition that explained its clinical features many would accept that as ‘proof’ of disease status yet biology is not the sole hurdle for what is described as mental illness achieving disease status. These judgement as to whether a condition is a disease if it involves behaviour regarded as immoral or even if involves appetites or drives will involve mental illnesses more than physical illness as behaviour is more frequently an associated or central component of mental illness.

Many impulse control or ‘addiction’ type problems or conditions involving sexual desires involve an additional value judgement as to whether this is best viewed as an immoral behaviour not worthy of the excuses and exemptions of a disease (Boorse (1975): 61). The person judging may reflect that if the person is taking illegal drugs why should they be given the exemption of criticism of behaviour that disease status confers (Boorse (1975): 61) for something they view as morally wrong.  Imagine the discomfort and clash with personal values that would arise from trying to describe paedophilia as a disease? Even if a biological difference in structure or process was discovered that was likely to be causative of paedophilia the moral revulsion that paedophilia evokes would make people reluctant to see it as a disease.

The inconsistencies in allocating disease status to the different states in the survey suggests that moral judgements are integral to the decisions made. There may also be a folk version of stoic beliefs that temperate and mild affectations are unhealthy but excessive appetites (and by implication) over-denial is mentally unhealthy ((Nordenfelt (1997)).  Disease status entitling tax-funded healthcare is likely to mean that moral judgements of deserving help and support are involved. Moral judgements of the type that somebody has contributed to their problem in a blameworthy manner -by not denying appetites or immoral behaviour – is undeserving of such help and associated excuses (Boorse (1975): 61). In these cases, a negative moral judgement is an obstacle to being allocated disease status but this happens less often in doctors decision-making as they are more likely to recognise states as diseases (Tikkinen et al (1975)). The reasons for this could be multiple and more than one reason may operate in each doctor.

Doctors
·       are taught about states in the same medical/ disease paradigm so may be more likely to not distinguish between diseases and non-diseases.
·       may wish to extend their claim to professional expertise and thus generate work for themselves by allocating disease status even when it is not warranted
·       may possess vague concepts of what disease is and allocate disease status haphazardly
·       may see patients presenting with problems caused by these states and wish to help and by allocating disease status helps justify medical help being given
·       experience and knowledge of these states may allow them to put less weight on moral judgements and focus on other factors relevant to disease status.

In contrast to the above discussion, negative moral judgments may increase the chance of behavioural states being allocated mental disease status. Schizophrenia may be readily conceived as disease despite the attempts to emphasise continuity between psychosis and typical human experience/ behaviour to reduce stigma whilst ignoring the evidence for discontinuity (David (2010)) because this continuity view induces uncomfortable feelings (Thibodeau & Peterson, 2018). A view of schizophrenia as a disease and separate from health may help resolve this uncomfortable feeling. Black slaves were viewed as trying to deprive their masters of their labour may be viewed as immoral by white American doctors and facilitated viewing them as suffering drapetomania (Wakefield (1992): 373-4). Perhaps Soviet dissidents were viewed by their psychiatrists as decadent for trying to oppose the proletarian dictatorship which then led to their views described as ‘reformist delusions’ and need for treatment (Fulford et al (1993): 806-807)). These negative moral judgements leading to disease status allocation may be enhanced when the consequences are negative such as confinement and unpleasant/ unnecessary treatments. To prove this would require careful questioning of the people making the judgements whether this statement is true. It may be that different doctors – with different training or cultures of value judgements – would be less likely to regard these states as diseases. Pre-civil war US black doctors for instance may be less likely to have regarded black slaves escaping white masters as immoral or bad and thus less likely to view them as mentally diseased.


Conclusion
Value judgments around morality and appetites are involved when people judge whether states are regarded as diseases. Examples where what seem clear diseases are commonly not regarded (especially by the public) as diseases include dental caries and erectile dysfunction. This suggests value judgements around morality and appetites can trump what appear to be factual dysfunctions/ biological disadvantage.  Since the value judgements are of behaviours these value judgments are more likely to be found in mental illness than in physical illness. Value judgments that reduce the chances of states being regarded as disease include if it involves behaviours regarded as immoral or if it involves appetites/ drives and disease status leads to favourable consequences such as tax funded healthcare to help. If the consequences of disease status are negative (such as confinement) then negative value judgements may make it more likely for states to be regarded as diseases. There seems to be disagreement between individuals as to whether value judgments prevent allocation of disease status to states. Different groups and individuals may place different weights on these value judgments. Doctors for a variety of reasons may be more likely to regard states as diseases.


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