CHAPTER 7. Human rights and the mentally ill
L earning objectives
▪ Discuss critically the nursing implications of human rights to and in mental health.
▪ Discuss critically the negative impact of stigmatisation, prejudice and discrimination against people with mental illness.
▪ Examine critically the ways in which a human rights approach to mental health might not always benefit the mentally ill.
▪ Discuss critically the nature and use of psychiatric advance directives (‘Ulysses contracts’) in mental health.
▪ Explore ways in which members of the nursing profession might improve its advocacy of people with mental health problems and severe mental illnesses.
I ntroduction
Discussions on patients’ rights to and in health care have tended to have as their focus persons with ‘physical health’ problems. While important, this focus has nevertheless been at the expense of attention being given to the moral entitlements of people with ‘mental health’ problems. Significantly, the subject of moral rights and the mentally ill has been relatively neglected in mainstream bioethics discourse (Johnstone 2001, 1995; Christensen 1997). In light of the past neglect of mental health care ethics in both the mainstream bioethics and nursing literature, and the unique features of psychiatric ethics that are being increasingly recognised (Hughes & Fulford 2005), ‘special’ attention to the moral plight of the mentally ill is warranted. In this chapter, a brief overview will be provided of some of the disproportionate, and hence unjust burdens, that people with mental illness have to carry in the cultural context of Australia. While drawing primarily on the Australian experience, this discussion nonetheless has relevance for nurses working in other countries.
P revalence of mental illness
The term ‘mental illness’ is generally used to describe ‘a number of diagnosable disorders that significantly interfere with an individual’s cognitive, emotional and social abilities’ (Council of Australian Governments [COAG] 2006: 1). Such disorders may include, but are not limited to, depression, bipolar disorder, schizophrenia and also states of extreme psychological distress (COAG 2006; Australian Institute of Health and Welfare [AIHW] 2005).
According to estimates by the World Health Organization (WHO), over 450 million people suffer from a mental or behaviour disorder (WHO 2001a: 3). Significantly, only a small minority of these people ‘receive even the most basic treatment’ (WHO 2001a: 3). Most individuals with mental illness, WHO asserts, ‘are left to cope as best they can with their private burdens such as depression, dementia, schizophrenia, and substance dependence’ (WHO 2001a: 3).
In Australia, it is estimated that a mental illness and/or mental health problem will affect more than one in five (20%) of the adult population in their lifetime, and between 10–15% of young people in any one year (AIHW 2005). According to government sources, mental disorders constitute the leading cause of disability in Australia, and account for an estimated 27% of the total years lost due to disability, at a cost of around $20 billion annually through lost productivity and participation in the workforce (AIHW 2005; COAG 2006).
S tigma, prejudice and discrimination against the mentally ill
It is accepted internationally that people suffering from mental health disorders, mental illness and other mental health-related problems are among the most stigmatised, discriminated against, marginalised, disadvantaged and hence vulnerable individuals in society (WHO 2001a; Guimón 2001; Johnstone 2001). 1
Compounding the vulnerability of people with mental illness are the harmful effects of stigma itself (referred to as ‘iatrogenic stigma’) (Sartorius 2002; Sartorius & Schulze 2005). In order to understand why and how the process of stigmatisation, prejudice and discrimination work to marginalise, disadvantage and hurt people with mental health disorders and illnesses, some clarification of the notions of ‘stigma’, ‘prejudice’ and ‘discrimination’ is required here, and is provided below.
S tigma
Stigma (from Latin via Greek meaning ‘brand’ or ‘bodily sign’) is literally a distinguishing mark of social disgrace. It presupposes the acquisition of an attribute or attributes that others (usually those who are dominant members of a mainstream culture or group) find or regard as deeply discrediting (personally, socially and morally) and, importantly, who have the power to discredit those deemed ‘marked’ as socially disgraced (Goffman 1963; Link et al 2004; Link & Phelan 2006). What is regarded as a ‘distinguishing mark of social disgrace’, however, and what impact it will ultimately have on people, will depend on the culture from which it has originated and what that culture deems as being ‘deviant’ (Link et al 2004).
According to Jones et al (1984) the incidence and impact of a given stigmatised ‘characteristic’ or ‘condition’ will depend on the following five dimensions:
▪ Concealability — refers to how obvious a characteristic is and the degree to which it can be concealed from others
▪ Disruptiveness — refers to ‘the extent to which a mark strains or obstructs interpersonal interactions’
▪ Aesthetics — refers to the extent to which a mark elicits an ‘affective reaction of disgust’
▪ Origin — refers to ‘how the condition came into being’ and particularly whether the marked person was ‘responsible’ for the condition (e.g. whether genetic, accidental or self-caused)
▪ Peril — refers to ‘feelings of danger or threat that the mark indicates in others’ (cited in Link et al 2004: 512).
The process of stigmatisation becomes problematic when it evolves into a situation in which an individual is disqualified from full social and cultural acceptance on the basis of his or her carrying a given ‘distinguishing mark of social disgrace’ (e.g. being immigrant, disabled, homosexual, mentally ill, old etc.) (Goffman 1963). Inevitably this means that stigma almost always carries with it commensurate processes of discrimination; that is, the unfair treatment of persons on the basis of their ‘distinguishing mark(s)’. This treatment is unfair since judgments are made on the somewhat arbitrary basis of morally irrelevant distinguishing marks, rather than on moral considerations per se; hence the notion that stigma and stigmatisation are unjustly discriminatory. This outcome is unethical since, by focusing on one (or more) arbitrary characteristic(s) of a person (e.g. the marks that may ‘distinguish them’), stigma and discrimination undermine the moral worth (dignity) of a person (results in them ‘losing face’, if you will) and thus dehumanises them. The stigmatising and (negative) discriminatory treatment of persons thus stands in contradistinction to the respectful treatment of persons — that is, responses to persons that are guided by profoundly moral considerations, not merely arbitrary ones.
It is important to note that stigma can involve both ‘public’ (public-stigma) and ‘self’ (self-stigma) reactions. Public-stigma has been described as comprising ‘reactions of the general public towards a group based on stigma about that group’, and as consisting of three elements: stereotypes, prejudice and discrimination, that occur in ‘the context of power differences and leads to reactions of the general public towards the stigmatized groups as a result of stigma’ (Rüsch et al 2005: 530 & 531). Self-stigma, in contrast, refers to ‘reactions of individuals who belong to a stigmatized group and turn the stigmatizing attitudes against themselves’ (Rüsch et al 2005: 531). Like public-stigma, self-stigma also consists of three elements: stereotypes, prejudice and discrimination, but with the notable distinction that all three tend to be strongly aligned with public-stigmatisation, with individuals internalising the negative public attitudes against themselves; for example ‘That’s right; I am weak and unable to care for myself’ (Rüsch et al 2005: 531).
In the case of mental illness and mental health problems, stigmas globally have been found to be ‘widely supported by the general public’ (Rüsch et al 2005: 532; see also Martin et al 2000). While some have suggested that the increase in demand for mental health services in some countries can be taken as a key indicator that stigma is beginning to decline in those countries, others are more circumspect (Mojtabai 2007). Rüsch et al (2005), for example, suggest that, overall, mental illness has in fact become even more stigmatised over the last decade. Furthermore, in keeping with the under-recognition of the negative effects of stigma generally on people’s life chances and lives, the stigmatisation of the mentally ill is also under-recognised — contributing further to the ‘double jeopardy’ that people with mental illness face on account of being both mentally ill and stigmatised (Link & Phelan 2006).
The double jeopardy faced by people with mental illnesses (especially when ‘multiple stigmatising factors’ are also in play [Link & Phelan 2001]) is extremely burdensome. As the US Department of Health and Human Services (1999: viii) noted in its landmark report Mental Health (the first Surgeon General report ever issued on the topic), ‘stigma tragically deprives people of their dignity and interferes with their full participation in society’.
In recent years there has been increasing recognition that mental illness is an illness that ‘strikes with a two-edged sword’ (Corrigan et al 2004), which in turn imposes on its sufferers ‘a double problem’ (Rüsch et al 2005). Corrigan et al (2004: 489) explain:
On the one side, people must struggle with the symptoms and disabilities that prevent them from achieving many of their life goals. On the other, the stigma of mental illness further hampers their opportunities and aspirations.
Stigma not only hampers the opportunities and aspirations of people with mental illness, however. As Hocking (2003: S47) points out, people’s experiences of stigma and prejudices associated with mental illnesses can, in fact, be as distressing as the symptoms of the illnesses themselves. Moreover, as research has shown, in addition to causing anger, embarrassment, fear and isolation, the stigmatising attitudes and behaviours of people can exacerbate an illness and can also lead to depression and even suicide in those most affected (Dinos et al 2004; Hocking 2003). What is especially worrying, however, is that stigma has also been identified as ‘a significant barrier’ to the mentally ill getting needed care and treatment, and even as being ‘the main obstacle to a better life for the many hundreds of millions of people suffering from mental disorders and their consequences’ worldwide (Sartorius 2002: 1471; see also Rüsch et al 2005; Sartorius & Schulze 2005).
Stigma has become so associated with mental illness that some have suggested that ‘recovery’, in part, also involves ‘taking back control and seeing oneself as more than a stigmatising label’ (Diesfeld & Freckelton 2006: 93). Significantly, Australian research has also found that, for people with mental illnesses and their families, less stigma is the ‘number one thing that would make their lives better’ (Hocking 2003: S46).
P rejudice and discrimination
The term prejudice (literally to ‘prejudge’ without adequate facts) may be defined as ‘any belief (especially an unfavourable one), whether correct or incorrect, held without proper consideration of, or sometimes in defiance of, the evidence’ (Flew & Priest 2002: 326). The counterpart of prejudice is discrimination. Discrimination, in turn, may be broadly defined as ‘the unfair treatment of a person, racial group, minority, etc, based on prejudice’.
It is important to clarify that discrimination can be either direct or indirect/intentional or unintentional. Direct discrimination may be held to have occurred when ‘someone who has one of the personal characteristics (e.g. age, ethnicity, religious beliefs) protected by law is treated less favourably than someone who doesn’t have that personal characteristics’ (noting that one does not have to have acted intentionally or to believe that the act is discriminatory) (Centre for Culture Ethnicity and Health 2003: 7). Indirect discrimination, in turn, may be held to have occurred when ‘a policy or rule that treats everyone the same way has an unfair effect on more people of a particular race, colour, descent, or national or ethnic origin than others’ (noting that unlike direct discrimination, indirect discrimination may be justified ‘if the policy or rule is reasonable and relevant to particular circumstances’) (Centre for Culture Ethnicity and Health 2003: 7; Jones 2001).
People with mental illnesses (or a past history of mental illnesses) are vulnerable to both direct and indirect/intentional and unintentional discrimination in a variety of contexts including health care, research, and other social domains where the ‘public prefers to maintain social distance from persons with mental health problems’ (Muroff et al 2006: 129; see also Byrne 1997; Corrigan et al 2004; Martin et al 2000; Rüsch et al 2005). And although there have been significant advances made in mental health over the past several decades, international studies have repeatedly found that stigma and discrimination (both direct and indirect) against the mentally ill (especially those with psychotic illnesses) is pervasive, and continues to have a negative influence on ‘how a psychiatric diagnosis is accepted, whether treatment will be adhered to and how people with mental illness function in the world’ (Dinos et al 2004: 176; see also Glozier et al 2006).
In Australia, for example, a 1993 national inquiry into the human rights of people with mental illness found that people affected by mental illness suffered from ‘widespread, systematic discrimination and are consistently denied the rights and services to which they are entitled’ (Burdekin et al 1993: 870). The inquiry also found that discrimination was particularly widespread in mainstream society, with the mentally ill experiencing ‘stigma and discrimination in almost every aspect of their lives’, ranging from restrictions on eligibility for insurance and superannuation schemes, to employment, education and training (Burdekin et al 1993: 925). Equally disturbing was the inquiry’s additional finding that underpinning this discrimination were deeply ingrained (and often structurally reinforced) societal attitudes of fear, ignorance and intolerance of mental illness and mental health disorders.
A decade later, a nationwide review of the experiences of users and providers of community-based mental health services in Australia found that the human rights of mentally ill persons (including their right of access to appropriate mental health services) continue to be violated (Groom & Hickie 2003; Groom et al 2003; see also Armstrong 2003, 2000; Muir-Cochrane et al 2002). Disturbingly, people of non-English speaking backgrounds in Australia (on account of being ‘mentally ill’, ‘ethnic’, and stigmatised on both these counts) have been identified as being in ‘multiple jeopardy’ of being discriminated against and suffering the burden of their mental illnesses and diseases (Victorian Government, Department of Human Services 2006). Tragically, the unjust burden of suffering associated with stigma, prejudice and discrimination against the mentally ill is not confined to the cultural context of Australia. According to WHO (2001a: 3), mental ill-health and the burden of suffering associated with it (including that imposed by stigma and discrimination) has been largely ignored or neglected in most parts of the world.
A human rights approach to protecting the mentally ill
In Australia, as in other countries, it has become increasingly recognised at a social, cultural and political level that people suffering from mental illnesses, mental health disorders and other mental health-related problems need to be protected from abuse and neglect, something which for a variety of reasons they are especially vulnerable to experiencing. This need of protection has also been recognised at an international level as evident by the United Nations General Assembly’s adoption in 1991 of the principles for ‘The Protection of Persons with Mental Illness and for the Improvement of Mental Health Care’ and, more recently, by the WHO’s release of its World Health Report 2001, ‘Mental Health: New Understanding, New Hope’ (WHO 2001a).
In attempting to secure protection of the mentally ill and disordered from abuse and neglect, a human rights model of mental health care ethics has been adopted. Underpinning the selection of this model is the view that ‘all people have fundamental human rights’ and that people with mental health problems or disorders should not be precluded from having or exercising these rights just because of their mental health difficulties. As the Mental Health Consumer Outcomes Task Force argued over a decade ago (1995: ix):
The diagnosis of mental health problems or mental disorder is not an excuse for inappropriately limiting their [people with mental health problems or disorders] rights.
In March 1991, the Australian Health Ministers acknowledged and accepted the above viewpoint, and adopted, as part of Australia’s national mental health strategy, the final report of the Mental Health Consumer Outcomes Task Force, titled Mental Health Statement of Rights and Responsibilities. First published in 1991 and reprinted five times since its initial publication (latest edition 2000), this document stands as an influential guiding force behind other public policy initiatives and statements such as the National Mental Health Policy (Australian Health Ministers 1992), the National safety priorities in mental health: a national plan for reducing harm (National Mental Health Working Group 2005), as well as health care professional practice in mental health care settings.
The Mental Health Statement of Rights and Responsibilities makes explicit and seeks to inform a range of stakeholders of a number of key rights (in fact, a mixture of moral, civil and legal rights) affecting ‘individuals seeking promotion or enhancement of mental health or care and protection when suffering mental health problems or mental disorders’ (Mental Health Consumer Outcomes Task Force 1995: 1). Included in its list are consumers’ rights to:
▪ access adequate, high-quality and culturally appropriate mental health care services
▪ make informed choices about care and treatment
▪ privacy, dignity and respect
▪ be treated fairly
▪ mechanisms of complaint and redress
▪ advocacy
▪ have legislation affirm their fundamental rights
▪ have mental health legislation reviewed and updated as necessary
▪ have access to relatives and friends
▪ ‘the right equal to other citizens to health care, income maintenance, education, employment, housing, transport, legal services, equitable health and other insurance and leisure appropriate to one’s age’ (Mental Health Consumer Outcomes Task Force 1995: 1).
As well as specifying a number of key rights, the statement also lists key responsibilities; included here are mental health consumers’ responsibilities to ‘respect the human worth and dignity of other people; and to participate as far as possible in reasonable treatment and rehabilitation processes’ (Mental Health Consumer Outcomes Task Force 1995: 2). The rights and responsibilities of service providers, carers and advocates are also listed and are framed in a way that primarily reflects the correlative duties they have in response to the consumer rights listed above.
P roblems associated with a human rights approach to mental health care ethics
At first glance, the content and intent of the Mental Health Statement of Rights and Responsibilities
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