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:

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:

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).

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.

At first glance, the content and intent of the Mental Health Statement of Rights and Responsibilities (referred to earlier) seems to provide an important step forward towards the protection of the human rights of people made vulnerable by mental health problems. On closer examination, however, there is room to suggest that the statement may, in reality, offer those working in the field little guidance on what to do when faced with morally problematic situations involving people who are mentally ill, mentally unwell, mentally disordered or whatever other description may be appropriate of someone experiencing a mental health problem. One reason for this relates to the problematic nature of a human rights approach to ethics itself (discussed earlier in Chapter 3 of this book). Let us consider this claim further.

Human rights claims entail a range of ‘special interests’ deserving protection for a variety of reasons. Human rights include moral rights, legal rights, civil rights and so forth, and thus do not exclusively concern moral rights. Of pertinence to this discussion is the moral rights aspect of human rights.

As previously explained, a moral right can be defined as a special interest or entitlement which a person has and which ought to be protected for moral reasons. Having a moral right usually entails that another has a corresponding duty to respect that right. Fulfilling a corresponding duty can involve either doing something ‘positive’ to benefit a person claiming a particular right or, alternatively, refraining from doing something ‘negative’ which could harm a person claiming a particular right. For example, if a patient claims the right to make an informed choice concerning prescribed psychotropic medication or electroconvulsive therapy (ECT), this imposes on an attending health care professional a corresponding duty to ensure that the patient is fully informed about the therapeutic effects and the adverse side effects of the treatments in question as well as to respect the patient’s choice to either accept or refuse the treatment, even where the health professional may not agree with the ultimate choice made. The moral force of the right’s claim in this instance is such that if an attending health care professional does not uphold or violates the patient’s choice in regard to the treatment options considered, that patient would probably feel wronged or that a serious injustice had been done. The health care professional in turn could be judged, criticised and possibly even censured on grounds of having infringed the patient’s rights.

As has already been explained, a human rights approach to ethics in health care is widely used. It is not, however, without difficulties. For example, the Mental Health Statement of Rights and Responsibilities itself acknowledges that the freedom of people to exercise their human rights (and responsibilities) is ‘inherently linked to the mental health functioning of individuals and communities’ (Mental Health Consumer Outcomes Task Force 1995: ix). Here serious questions arise concerning the status and usefulness of a human rights approach for people who are so mentally ill that they are unable to exercise their own rights. While it might be responded that in such instances an advocate could and indeed should (i.e. has a duty to) act on behalf of the person in question, this merely begs the question of who can and should undertake this role, as well as when, where and how?

For example, should the role of, and the duty to act as, an advocate fall to an attending health care professional (who may or may not have intimate knowledge of the mentally ill person)? Or a family member (who, while having intimate knowledge of the mentally ill person, may for some reason be estranged from him or her)? Or a friend (who has no legal relationship with the person, but nevertheless has the person’s best interests at heart)? Or a lawyer or some other legal representative (who, despite having the legal authority to act on behalf of the person, may be a complete stranger and not really be in a position to advocate the person’s ‘best interests’ at all)? How is a matter of this nature to be decided and by whom? There may be no easy answers to the questions posed. An additional problem concerns the philosophical issue of whether human rights are of a nature that allows another to validly act as a ‘surrogate decision-maker’ and make rights claims ‘by proxy’ on behalf of another. To put this another way, is the freedom to exercise a human right something that can be ‘abdicated’ to another? Or does this defeat the whole purpose of having individual human rights in the first place?

Another difficulty is that rights can conflict and compete with one another. For example, the patient’s stated right to have ‘access to family and friends’ could seriously conflict with the family’s and friend’s moral interests and entitlements to be spared the certain harms that might flow from contact; for example, in the case of a patient who is physically violent and has demonstrable homicidal tendencies. In a case such as this, the patient’s right to privacy and confidentiality might also stand in serious conflict with the moral interests of family and friends to be warned of a possible threat to their safety and wellbeing; for example, in instances where the client has disclosed a serious intention to kill a given person, as tragically happened in the 1974 American legal case Tarasoff v Regents of the University of California (discussed in Chapter 6). While a human rights approach to ethics may tell us what rights people have, it offers very little guidance in regard to what should be done when stated rights conflict and compete with one another.

Related to the above is the additional difficulty of establishing the extent to which a patient’s rights claim entails a correlative duty. Consider, for example, a person’s right to access appropriate and quality mental health care services. Consider also that such a claim may be extremely difficult to uphold in instances where services are either seriously under-resourced or simply do not exist (such as in rural and remote areas). Here difficult questions arise concerning who or what has a corresponding duty to respond to a mentally ill person’s rights in this instance: Is it an individual nurse? another mental health worker? a mental health service? a general hospital? family? friends? the state? a philanthropist? or some other entity? Compounding this difficulty is the problem of competing rights claims. For example, a number of persons might make equally deserving claims to mental health care services (as they do) but, because of a shortage of resources, it is genuinely difficult to satisfy the rights claims of all persons equally. Compounding these difficulties still further is the additional question of whether it makes sense to even claim a right to something that does not exist, in this instance, a particular type of health care service in a particular region? Further, is it reasonable to condemn someone for not providing a service where no such service exists or where existing services have been totally exhausted? There may be no satisfactory answers to these questions.

Finally there is the paradoxical problem of a human rights approach to mental health care ethics being abused to advance dominant political interests. For instance, trends over the past four decades favouring the deinstitutionalisation of the mentally ill might be cynically appraised as having been motivated not by humane concern for people with mental health problems confined to institutional care, but by blatant political interest in reducing the cost (both financial and political) of institutionalised mental health care services around the country — some of which were shown to be seriously substandard (see, e.g. the publicly documented cases of the Chelmsford Hospital in New South Wales [Bromberger & Fife-Yeomans 1991], Ward 10B of Townsville Hospital in Queensland [Carter 1991], and the Lakeside Hospital in Victoria [Burdekin et al 1993: 870]). Consider the following.

In his controversial text Nowhere to Go, Torrey (1988), an American psychiatrist, persuasively argues that sometimes rights (e.g. civil and legal rights) designed to protect the mentally ill often protect their ‘right’ to remain mentally ill. In illustrating this, Torrey (1988) cites an American case of a man suffering from schizophrenia and who was the subject of a committal hearing. The man had been refusing food, but was said to have been ingesting his own faeces. Although in a state of neglect and in need of institutional care and treatment, the man could not be institutionalised against his will without a court order. Significantly, while the court acknowledged that the man was eating his own faeces, it did not regard this as constituting a ‘danger to self’ (or to others, for that matter). The court subsequently upheld the man’s ‘civil liberty’ not to be institutionalised against his will. An important point to be drawn from this case is that while that man’s civil liberties (rights) were protected by the court in this instance, his genuine human welfare and wellbeing were not. As one observer cited by Torrey (1988: 31) phrased it, ‘we are protecting the civil liberties [of the mentally ill] much more adequately than we are protecting their minds and their lives’.

In light of the above discussion, it can be seen that a human rights approach to mental health care ethics can be problematic. One reason for this can be found in the nature of a rights approach to ethics itself and the difficulties which can be experienced in determining who has rights, who has corresponding duties to these rights, and how best to try and satisfy all valid rights claims of all people equally. Another difficulty is that what are sometimes put forward as moral rights are not, technically speaking, moral rights at all, but rather a mixture of civil rights (special interests and entitlements people have by virtue of being civilians), legal rights (special interests or entitlements bestowed by law and which ought to be protected for legal reasons) or institutional rights (special interests or entitlements bestowed by an institution in which one is participating in some way) — all of which have differing moral force. This mixture can confuse judgments on what is a morally correct course of action to take and can compound many of the problems outlined above.

An important question to arise here is: If statements on human rights and responsibilities in mental health care are so problematic, is there any point in having them? The short answer to this question is, yes. Whatever the faults, weaknesses and difficulties of such statements, they nevertheless achieve a number of important things:

What a consideration of the difficulties outlined above warn, however, is that if a human rights approach to mental health care ethics is to be taken, nurses need to be well informed about the pitfalls of this approach and understand that it may not always be helpful in guiding ethical professional conduct.

PADs have been touted as having the capacity to realise a number of benefits, including ‘decrease hospitalizations, reduce coercion in treatment, and improve relationships between consumers, families and clinicians’ (Peto et al 2004); and destigmatising patients with mental illness on account of giving them the same rights to refuse psychiatric treatment as patients who wish to refuse general medical treatment (Atkinson et al 2004). To date, however, the anticipated benefits of PADs have yet to be realised. One reason for this is the systemic barriers to their use including a ‘lack of resources deployed to assist patients in preparing PADs, and lack of “buy-in” and acceptance of PADs by clinicians’ (Swanson et al 2007: 78). Lack of awareness and education about PADs (on the part of consumers and clinicians alike) has also been identified as a contributing factor (Peto et al 2004).

Research has found that consumers tend to have a high interest in and demand for PADs; in contrast, clinicians have been found to be somewhat ambivalent about and even afraid of them (Amering et al 1999; Appelbaum 2004; Atkinson 2004; Atkinson et al 2004; Elbogen et al 2006; Hobbs 2007; Kaustubh 2003; Kim et al 2007; Puran 2005; Srebnik & Brodoff 2003; Swartz et al 2006; Swanson et al 2006, 2006b, 2007; Varekamp 2004). In one study, for example, although 66–77% of consumer respondents stated they would like to complete a PAD if given the opportunity and assistance to do so, only 4–13% had actually done so (Swanson et al 2006). In another study, whereas 89% of voluntary organisations and over two-thirds of stakeholder groups surveyed thought that PADs were needed, only 28% of psychiatrists surveyed thought they were (Atkinson et al 2004). And while some studies have suggested that clinicians are broadly supportive of the ‘advance-consent’ function of PADs (termed ‘prescriptive function’), they are more reticent about their ‘advanced-refusal’ function (termed ‘proscriptive function’) — especially if used to refuse all future treatment (Swartz et al 2006).

Despite this reticence, the PAD is increasingly being regarded as an important instrument that enables respect not only of the patient’s wishes, but also their values (i.e. in regard to what is important in life). And while PAD instruments should not ‘replace deliberation about possible future changes in the patients’ condition,’ they are nonetheless seen as having an important role to play in eliciting and guiding communication about such matters (Widdershoven & Berghmans 2001: 93; see also Spellecy 2003).

PADs are not without risk, however. Some commentators are especially worried about the moral authority of psychiatric advance directives (particularly if patients change their minds at some point), and their vulnerability to being abused and misused (Spellecy 2003). As Dresser (1982: 842) cautioned over two decades ago, if insufficiently informed persons enter into commitment contracts ‘only to please their psychiatrists, the contracts would become an avenue for the abuse of psychiatric paternalism, thus decreasing individual liberty’. Dresser further cautions that, in the absence of an opportunity for patients to withdraw consent to treatment, PADs in reality could well stand as a ‘coercive treatment mode that would take us a step backward — or at least sideways — from a more sensitive and realistic solution to a very difficult situation (Dresser 1982: 854).The inability to get ‘quick determinations’ of illness and competency — and hence healing treatment — has also been identified as a risk that could serve ultimately to undermine the effectiveness of PADs (Cuca 1993: 1178).

Like their counterparts advanced directives at the end stage of life (discussed in Chapter 12 of this book), however, PADs are amenable to a range of processes that can ensure they achieve their intended purpose; namely, ensuring protection of the patient’s significant moral interests, welfare and wellbeing. For example, during ‘critically reflective periods’ or ‘cool thinking periods’ the opportunity to revoke a previously made psychiatric advanced directive must always be present; treatment options should remain the subject of ongoing critical evaluation, and so on.

Earlier, in Chapter 6 of this book, under the discussion of competency to decide, the case was given of an involuntary psychiatric patient who was held down and given an intramuscular injection of psychotropic medication against his will (see pages 160–1). It will be recalled that this incident resulted in the patient being left highly mistrustful of nursing staff and even less willing to comply with his prescribed oral medication. There is room to speculate that had a PAD been in force at the time for this patient, a very different outcome might have resulted in this case.

The enactment of formal legislation regulating PADs is relatively new. The United States (US) has the longest history of PADs, with Minnesota in 1991 becoming the first American State to enact legislation giving recognition to the ‘advance psychiatric directive’ allowing its citizens to ‘draft directives for intrusive mental health treatments’ (Cuca 1993: 1165). Currently there are 21 states in the US that have legal processes in place for allowing and managing PADs (Atkinson et al 2003; Swartz et al 2006). These developments are regarded by some US researchers as being ‘one of the most significant developments in US mental health law and policy in recent years’ (Swanson et al 2007: 77).

Although early proponents of PADs in the US expected that their use would spread (Appelbaum 1991), this has not happened (Varekamp 2004). Only a few countries (e.g. Austria, Germany, Canada, Switzerland, the Netherlands and the United Kingdom (UK) have introduced or are working to introduce and uphold PADs or ‘Psychiatric wills’ (Amering et al 1999; Atkinson et al 2003; Varekamp 2004). In the UK, for example, the passage through parliament of the Mental Capacity Bill 2004–2005 (given Royal Assent in 2005, and coming into force in 2007) authorised a limited form of PADs (i.e. instruments provided for by this legislation can only be used to refuse, rather than give consent to treatment) (Meredith 2005: 9; Swartz et al 2006).

In Australia, although there is legal regulation (via legislation and case law) of advance directives, a firm distinction is made between psychiatric and non-psychiatric contexts in which advanced directives can be applied (Leo 2004). The effect of this is that advance directives legislation allows competent people to refuse proposed medical interventions for physical illness, but does not give the same effect to refusals made by competent people for psychiatric treatment (Foukas 1999; Leo 2004). Moreover, legislation still allows and authorises psychiatrists to override the consent of a patient in a psychiatric context ‘effectively renouncing the patient’s right to self-determination’ (Leo 2004: 5).

Despite strong advocacy by consumer groups and individuals in Australia (see Mental Health Legal Centre Inc 2004; PsychRights 2007; Strong, nd), there is no immediate indication that, with the notable exception of Queensland, Australia intends to go down the path of adopting PADs as a legal mechanism for promoting and protecting the rights of mentally ill people to participate effectively in decision-making concerning their psychiatric care and treatment. While acknowledging the limits of PADs, as one consumer advocate has pleaded: