The rights and abuse of the mentally ill
We have focused so far on the forces from within the professions that led to deinstitutionalization. However, just as with the origins of the asylums, the social climate of the time was probably as influential, if not more so. Directly after the Second World War Europe burned with a spirit of change and a thirst for social justice.
The old order was in disgrace and the rights of the common man were the priority of both returning soldiers and returned governments. Democracy and social inclusion (though not called that then) dominated the international agenda, whether in education, health, or housing. The rights of disadvantaged groups to take full part in this new society were strongly defended and the mentally ill were one such group. Their wholesale liquidation in Nazi Germany only served to underline their rights for protection.
Nowhere is this so clearly demonstrated as in changes in Mental Health Law. In the UK, for example, the 1890 Lunacy Act focused on protecting the rights of the sane not to be judged insane (with scant regard to the rights or welfare of the insane) whereas the 1959 Mental Health Act focused on protecting the rights of the mentally ill by ensuring due process and review of their care and detention. A series of scandals about the abuse of mental patients surfaced in the 1960s and 1970s. Revelation after revelation of degrading and inadequate care followed inquiries into several mental hospitals.
The reports ranged from the denial of dignity through to frank abuse and assault. These scandals painted a recurrent picture of large isolated institutions (size appears crucial, with risk escalating rapidly above about 400 patients), with a poorly trained but very cohesive staff group, many of whom had followed their parents into the job. The practices Goffman had identified were very much in evidence, with little attention to individualized treatment or care.
These revelations produced understandable revulsion and strengthened resolve to reform or remove asylums. In 1960 the UK Health Minister prophesied their demise but predicted that professional attitudes would outlive the bricks and mortar. The Italian reforms drove this home. Their charismatic originator, the psychiatrist and philosopher Franco Bassaglia, believed that the mental hospital was fundamentally unreformable and abolition was the only way forward. Law 180 in 1978 prohibited compulsory admissions to mental hospitals immediately and demanded their total closure within three years.
At this time the whole legitimacy of psychiatry was being called into question. The anti-psychiatry movement led by R. D. Laing, Thomas Szasz, and Michel Foucault had been borne aloft in the student revolts of 1968. Their books became campus bibles of the 1970s across the whole of Europe and the US. By the early 1980s the downsizing and closing of mental hospitals was an established international movement led and articulated by mental health professionals, mainly psychiatrists. However, despite smaller numbers of inpatients, the cost of mental health care increased as staffing standards came more in line with those in general medicine and as decades of neglect were addressed. The financial advantages of closing whole mental hospitals became obvious to governments who have driven this agenda for the last 20 years (often now opposed by the professionals). It is this ‘unholy alliance between therapeutic liberals and fiscal conservatives’ as one astute US observer noted which has driven deinstitutionalization over the last 30 years.
‘Transinstitutionalization’ and ‘reinstitutionalization’
When the asylums were built they did not take their first new patients from family homes but from prisons and workhouses. One worrying aspect of deinstitutionalization is that some of the reduction means more mentally ill patients are transferred back to prisons. As psychiatric units became smaller and more therapeutic in orientation, many of their more difficult patients (who previously would have remained for longer periods on locked wards) were denied access and ended up in prison. This regrettable trend has been exacerbated in parts of the world where the criteria for compulsory care have been so tightened that they require evidence of immediate danger. California now has more psychotic individuals in prison than in mental hospitals.
So the rate of deinstitutionalization is not quite so dramatic as hospital closures might suggest. Indeed, in the last five years or so, the signs are of a slight reverse, with more mentally ill people in some form of supervised accommodation. There are many factors involved (see below) but one is undoubtedly increasing intolerance of risk.
Care in the community
‘Any fool can close a mental hospital’ remarked a senior UK health official in the 1980s. He quickly added that the skill was not in closing the hospital but providing alternative care. Recognizable forms of modern community care have been developing since the 1930s - psychiatric day hospitals in Russia, outpatient departments in both the US and the UK, mobile clinics in the Netherlands.
However from the 1960s onwards real effort went into community services as an alternative to mental hospitals rather than simply as a complement.
District general hospital units and day hospitals
The building of small inpatient units either in or alongside local general hospitals stood for the destigmatizing of the mentally ill and the move away from the mental hospital. These units were small, usually 40–100 beds. They catered for acute, short-term patients and could usually rely on the mental hospital for back up. They are an international phenomenon but practice reflects local customs. In the US they embody a strong tradition of general hospital liaison psychiatry; in Germany an academic psychosomatic tradition of psychotherapeutic treatment of physical illnesses; in the UK a mental hospital tradition adapted to more rapid discharge. The Italian reforms insisted on a complete break, substituting tiny, very short-term admission units.
It is sobering to reflect, however, that in the new expanded Europe over half of psychiatric inpatients are still cared for in traditional mental hospitals with little, if any, real community provision. US practice varies enormously between states, from highly community based services to extensive reliance on old mental hospitals.
Locating psychiatric units in general hospitals and keeping them small guards against many of the problems of asylums, but they have their own problems, such as being cramped and less tolerant. They may also have difficulties with very difficult patients and usually cannot offer the breadth of activities and treatments of larger units. They are, however, a first essential step out from the asylum into the community.
Community mental health teams (CMHTs) and community mental health centres (CMHCs) Breaking the dominance of mental hospitals involved moving services closer to patients. Services needed to be accessible and not too frightening so that patients and families would approach them early for help. ‘Sector psychiatry’ arose to meet the challenge. Asylums took all the patients from a defined catchment area (often a whole county or a city). The sector approach divided this into small manageable areas (40,000–100,000 population) to provide easily accessible, fairly comprehensive care. France and the UK led the way in this development. The French ‘secteur’ arose from sociological theory and emphasized crisis intervention. The service was restricted to psychotic patients and remains patchy. The UK approach was more comprehensive but entirely pragmatic, much less theoretical. Local care followed 1950s legislation requiring compulsory detained patients to be offered outpatient follow-up and requiring the involvement of social services. Collaboration was not feasible from distant mental hospitals; linking with social workers and family doctors was only realistic in small neighborhoods. The sector approach meant psychiatrists and nurses and social workers started working together in teams.
In the UK this development was made possible by ‘community psychiatric nurses’ (CPNs). These are nurses who work almost exclusively outside hospital, most often visiting psychotic patients in their homes to ensure they carry on with their medicine but also helping to solve day-to-day practical problems. Starting from two in 1953 there are now more CPNs than psychiatrists in the UK. CPNs and psychiatrists working together established multidisciplinary team practice, gradually incorporating social workers, clinical psychologists, and occupational therapists.
Community mental health teams assess the broad range of mental health problems (from depression to psychosis) and offer treatment in clinics, patients’ homes, day hospitals, and (when needed) as inpatients. They have become the norm throughout Europe and many parts of the world. The Italian reforms most clearly encapsulated this model of care, emphasizing informality, local knowledge, and flexible access.
Most CMHTs are broadly similar. In Italy and the UK the same team usually looks after patients both in and out of the hospital, but in much of Europe and the US these responsibilities are separate. In some services CMHTs see the whole range of mental health problems; in others they may restrict themselves to severe psychoses. There has been a recent move to replace CMHTs with a range of specialized teams (e.g. for crisis, for long-term support, for first onset patients). While the focus of these teams differs, their practice (staffing, assessment, reviews, etc.) is surprisingly similar. CMHTs are not the only model for provision of local services. In the US President Kennedy’s 1963 ‘Community Mental Health Centers Construction Act’ established community mental health centres. These were ambitious, relatively large units aiming to reduce fragmentation of care and provide a range of services including day care, assessment, treatment, outreach, and preventative and educational services for mental health. They were over-ambitious and proved impossible to staff and run and soon contracted to focus on day care and clinics. The model has functioned well in the Netherlands and in some parts of Europe.
Day hospitals (in tandem with general hospital units) were proposed as the alternative to mental hospital care but have been overtaken somewhat by events. The need for them never fully materialized as CMHTs developed. Many of the anxiety and depression treatments they were planned for were delivered by CMHT staff with their newly acquired skills. Effective outreach to support more severely ill patients has also reduced the need for them. Day centres on the other hand (providing social, rather than health care) continue to flourish. They reduce the isolation and loneliness experienced by so many mentally ill people, particularly in large anonymous cities.
Stigma and social integration
The first twenty years of the move to community care are generally considered something of a global success. Patients who did not need to be in expensive, gloomy mental hospitals got out of them and found more rewarding lives. The support offered them by CMHTs was effective but light-touch. As mental hospitals began to close, however, patients with increasingly severe disabilities were discharged. Closures often ran far ahead of the provision of adequate alternative services, in particular, affordable local housing. Many patients became homeless (particularly in the US where this became a national scandal). Living in squalor on the streets they became a reproach to us all and often victims of petty crime and exploitation. The picture was, of course, very varied. Some states in the US had quickly developed sophisticated and admirable social provision and this was true of much of Europe. However, major cities (London, Rome, New York, Los Angeles) have struggled to cope and generally not succeeded Changes in legislation motivated by concern for civil liberties, which prevent hospitalization unless there is evidence of immediate danger (as in New York and California), exacerbated this problem. Very disabled patients rejected hospital even if there was a bed for them and the new laws wouldn’t permit their compulsion. It is telling that patients who have experienced both prefer living in poverty and insecurity on the street to being in a relatively comfortable hospital ward. This can’t simply be written off as lack of insight – most of us value personal freedom and choice above comfort. However, the sight of ‘bag-ladies’ and homeless, obviously mentally unwell individuals on our streets presents a broad moral challenge for which we have no easy answer.
Stigma has been proposed as one of the main burdens of mental illness and there are now international programmes aimed at reducing it. Stigma is manifest by our wish to avoid specific individuals (‘establish social distance’) and in its most extreme form to expel or banish them. The mentally ill have always been stigmatized, as have sufferers from many illnesses in the past. While the more extreme manifestations of stigma such as the leper’s bell or branding people are lost in ancient history, discrimination and neglect still leave the mentally ill denied full social acceptance. Discrimination in jobs and housing is common. There is evidence that stigma against the mentally ill is less in younger people than in their elders. This is clearly an encouraging finding but its cause is unclear. Does the current younger generation understand mental illness better, having been more exposed to it? Or do people simply become more intolerant with age? Hopefully the former. We usually try to avoid (i.e. ‘stigmatize’) people who we think pose a risk to us. In the past the fear was mainly of infection (leprosy, tuberculosis, etc.) but with mental illness it is of frightening or dangerous behaviour. It would be misleading to deny that mental illness is associated with a raised risk of violence. For most patients that risk is to themselves (suicide and self-harm) but individuals with psychosis are still about four times more likely to threaten or hurt others than non mentally ill individuals. This seems a lot but it represents a tiny risk as only 2–3 per cent of the population suffers from such disorders. The real risk to most of us is from otherwise healthy but intoxicated young men. Yet most countries are preoccupied with this risk, usually driven by high-profile cases of homicide by the mentally ill. In some cases this has led to new legislation, often taking its name from the victim (e.g. Kendra’s law in the US). In the UK wholesale reform of the mental health services has been ignited by two infamous homicides, one by a neglected individual with schizophrenia and one by a chaotic drug abusing man with a severe personality disorder. Similar reforms have been initiated in Sweden after the murder of their Foreign Minister Anna Lindh.
While each of these individual incidents is a tragedy for all involved, they really do not amount to an epidemic. In England, for example, homicide by the mentally ill has remained constant at about 160 a year for the last 40 years (while homicide by the non mentally ill has increased from just over 300 a year in 1980 to over 800 in 2000). Most of these ‘mental illness’ homicides occur within the family or are by individuals with personality disorders often complicated by drug and alcohol misuse (not what most of us typically think of as ‘mental illness’). However the fear of random assault by a psychotic individual, ‘prematurely discharged from a mental hospital’, exerts a remarkably powerful hold on public opinion. In the UK you are more likely to be killed by a speeding police car than by a mentally ill stranger.
Social consensus and the post-modern society
Concern with risk and its avoidance have been suggested as core features of a post-modern society. As common core values recede, protecting our individual survival and well-being becomes a dominant preoccupation. Whether or not one finds this argument convincing it is undeniable that Western societies are increasingly individualistic with less social consensus and greater risk consciousness. The emphasis of the 1940s and 1950s on shared social capital such as public schooling and health care has given way in varying degrees to a consumerist approach with an emphasis on personalized care. This has reflected, and in turn been driven by, massively increased social mobility both locally and internationally. Families have also become less central to how we function as adults and less stable in themselves. Modern industrial societies are rarely ‘homogeneous’ – there are large sections of society with quite differing origins, religions, values, and ethnicity. Despite its obvious benefits this can make psychiatry very difficult. Differing lifestyles and behaviour are accepted as choices and tolerated as long as they do not infringe the next person’s liberties. Most of us value these freedoms very highly. An increasing tolerance of varied lifestyle choices however can mean a reduced sensitivity to mental illness. When you can choose to dress and behave almost any way you want, it is harder to realize when somebody’s strange dress and behaviour are not simply self-expression but part of an illness. The over-active, disinhibited behaviour of manic patients is regularly misinterpreted as simply irresponsible or exhibitionist. Increasing uncertainty about social norms has been complicated by a vast increase in alcohol and recreational drug consumption in Western societies. Intoxication usually makes mental illnesses worse and their treatment more difficult. It also significantly complicates the recognition of mental illness – it is tragically common to assess a young student who has been unwell for months but whose room-mates attributed it all to drug use and so delayed getting help.
Stigma, an exaggerated sense of risk from the mentally ill, family break-up, high social mobility, and increasing levels of drug and alcohol use all combine to make community care of the mentally ill much more difficult than it was when the process started. This is reflected in a small but widespread rise in compulsory treatment and a modest increase in ‘reinstitutionalization’. This is balanced by a much more sophisticated and embedded respect for individual rights than would have been conceivable a generation ago. We are likely to experience continued soul-searching about community care and probably some rebalancing of the institution/community emphasis. A large-scale return to long-stay institutions is fairly unlikely in the coming years. Community care in one form or another is with us for the foreseeable future.