Dr. Sartorius is director of the division of mental health of the World Health Organization, CH12 11, Geneva 27, Switzerland. Leona L Bachrach, Ph.D., is editor of this column.
creasing capacity to prevent death after injury to the central nervous system may alsolead to an increased preyalence of organic mental disorders. Although methods for primary prevention of many neuropsychiatric disorders are well defined, acceptable to communities, and of a cost that even poor countries can afford, prevention of such disorders is still neglected in many national health programs, mainly because of economic difficulties, the lack of awareness of possibilities for prevention, and the low ranking ofmental health programs on the scale of values of individuals and societies (1,2). When disease does occur, a significant array of treatment methods can prevent or diminish possible impairment. Recent long-term followup studies have shown that even with current treatments, many persons experience a significant improvement in their condition and can expect many years of disease-free life. New, even more effective treatment methods will probably be developed in the near future. Unfortunately, however, appropriate treatment and rehabilitation are still not applied on a broad enough scale, for reasons ranging from ignorance and poverty to negligent attitudes and inappropriate health service structure. As a result, there are and will continue to be-at least for a few more decades-people in whom disease will not be prevented ad who will experience impairment because their treatment was suboptimal. Their numbers are difficult to estimate, but it is likely that currently at least onequarter of all disabled people are disabled due to a mental or neurological disorder; thus at least 150 million people worldwide are incapacitated
because of these disorders. The world of today is complex, and its socioeconomic changes are rapid. Changes in the distribution of labor and in the position of women, the development ofnew technologies for information management and industrial production, and the growing dehumanization of medicine and social services conspire against a decent survival of those who are less able. Many jobs in industrial societies require considerable education that is often not accessible to persons who are impaired. The shrinking size and lessened cohesion of families and communities weaken social support networks for disabled persons, and competing priorities render creation ofsuch networks improbable. Financial crises make major investments in re-education and job or social placement increasingly difficult. As a result of these fitctors, rehabilitation of the 1 50 million or more people impaired by mental illness has become more of a problem than it would have been a few decades ago. Whatever insufficiencies in resources the rehabilitation programs had yesterday will become worse tomorrow. Rehabilitation has to be fundamentally rethought-reinvented in a new manner. Ifthat does not happen, society as a whole will be ethically diminished and slowed in its economic progress. Reinventing a process is best done together with all who are involved in it. Psychiatrists, psychologists, and other mental health workers should be joined by representatives of other disciplines, including sociology, anthropology, law, economics, education, and public health. In addition, representatives of sectors other than health, and in particular social welfare, planning, and education, must be involved if programs are to be realistic and useful. Consumers of rehabilitation services have already become part ofplanning bodies in some settings. It is hoped that their involvement will become the rule rather than the exception. Changes in our notions about rehabilitation are not likely to happen by themselves or to happen quickly unless we begin to question them actively. The following five proposed conceptual changes
1180
December
Hospital
The Chronic
Patient
Rehabilitation
and Quality Norman
Sartorius,
of Life M.D.,
Ph.D. Rehabilitation means restoring or creating a life of acceptable quality for people who suffer from a mental illness or who have impaired mental capacity that causes a certain level of disability. Improving the quality of life is a tall order because of the stigma attached to mental illness, the large numbers of people concerned, and the important role that mental functioning-itluding, for example, the capacity to iearn, to acquire coping skills, and to be motivatedplays in all relalilitation efforts. The frequency and severity of impairment due to mental and neurological disorders have changed over the past few decades and are likely to change further. On the one hand, there are good reasons to believe that the incidence and prevalence of certam mental disorders will grow in the years to come, while on the other hand it has been shown that primary prevention is possible in a large proportion of cases. An increase in incidence and prevalence can probably be predicted for most of the affective disorders and for mental disorders resulting from new diseases such as AIDS. The extension of life expectancy of those who have mental disorders and the aging of ihe population will likely increase the prevalence of numerous other mental diseases, such as dementia. The in-
1992
Vol.43
No.
12
and
Community
Psychiatry
illustrate what we may wish to think about. First, the goal of rehabilitation must become the improvement of overall quality oflife as perceived by patients and their immediate fmilies. Subsidiary goals could be employment or integration into a community, but these goals should not be seen as imperative norshould their attainment be seen as the sole or main indicator of success ofthe rehabilitation process. A sizable proportion of the world’s population will not have to work in the near future and will not be able to find work. Increases in economic productivity and advances in technological development have already made many ofthe projections ofthe size ofthe labor force obsolete, yet attitudes toward those who are not employed (for example, housewives) remain atavistic, producing a fuse labor market and creating misery and lessened self-esteem among those who do not have a formal job. Success in finding a job is still considered confirmation ofa person’s worth, even ifit provides less money than an unemployment subsidy and means additional financial losses due to the need to hire a person to do chores around the house or on the ftrm. Social productivity, help and support to others, the upbringing of children, creative art, and the many other activities that have made our civilization and keep our society distinguishable from herds of animals are given incomparably less attention, respect, and reward than traditionally structured jobs. A change of attitudes in this respect will be of vast importance for society as a whole. It will also help impaired persons in ways that no previous effort to help them has done. Achieving such a change of value systems is worth all the investment we can make, and it will take all that we can give it. Related to this change is the change of attitudes toward work in relation to leisure. Schools and media still speak of leisure and work as two opposite states rather than as two interchangeable modes of spending our time. It is drilled into people that work means chores and leisure is pleasure. Newspapers advise on flower arrangements for the home
but not for the office; there are books and courses on use of time at work but not about ways to use leisure time and to deal efficiently with time, with emotional needs, and with the needs of others. People are not likely to be rewarded for being very good at using their leisure time. Nor are they taught how they can learn to like their work better, look forward to it, and consider it relaxing. Second, rehabilitation should not be done/or people with impairments but with them. Ifquality oflife is to become a central criterion of success of health services and rehabilitation efforts, the opinion of those whose life is being changed must become the decisive factor rather than remain an interesting observation in the rehabilitation process and in the assessment of its effect. Bringing the perceptions ofimpaired persons, of their families, and of their communities (including health service agencies) into harmony requires conscious attention and much effort. The compromise solutions will often be lacking in elegance and will not follow the rules. Sometimes they will be so messy that accepting them will require much tolerance, advocacy, and understanding by all who deal with the problems of impaired persons. Third, people are different, and their stations in life usually reflect the differences. Impaired people are no exception to this rule. Their inability to do some things may make them ineligible for certain jobs, and their preference for certain life styles may make their adaptation to community averages or some set of ideal rules impossible. The consequence is that health workers and others involved in rehabilitation must be tolerant of differences and seek ways to match situations to people just as much as they try to make people fit situations. They must stop assessing the outcome of treatment or rehabilitation by the patients’ ability to abide by predetermined, rigid, and unjustified “normal” rules of behavior; there is no correct time to go to bed, and few persons in a country have such excellent qualities that they can be its president. Fourth, disabled people and their impairments change over time. Re-
Hospital
December
and
Community
Psychiatry
1992
Vol.43
No.
12
habilitation and support for people with problems must take into account such changes and the changes in the world in which they live. Firmly established doctrines in the field of rehabilitation are unlikely to be helpflil. Rehabilitation is a long-lasting process, and rehabilitation workers will have to keep reinventing their rules to accommodate the people they are helping while all are moving forward in time. Fifth, the closer we come to understanding rehabilitation as an intervention to improve the quality of people’s lives, the more difficult it is to see reasons for a strict distinction between services dealing with rehabilitation and those aiming to help people in other ways. This connection exists not only between health and rehabilitation services but also between these services and other community efforts, such as those involved in urban renewal. The conversion ofa rehabilitation specialist into a community agent and vice versa does not mean that the specific skills that both have should disappear. Rather, it means unity of purpose and aim, which gives rehabilitation higher priority and makes community work to improve the quality of life more comprehensive and humane. The changes in concepts and attitudes described here can come about only ifpeople ofdifferent professions and cultural backgrounds join hands in their effort to improve the lot of mentally and physically impaired people and ofall those who suffer the consequences of disease. The awareness that they are not alone will give these professionals and everyone else involved the strength to continue building and implementing new strategies and practices to help impaired persons live lives of acceptable quality.
References 1.
2.
Prevention of Mental, Neurological, and Psychosocial Disorders. WHO doc A39/ 9. Geneva, World Health Organization, 1986 Sartorius N, Henderson AS: The neglect of prevention in psychiatry. Australian and New Zealand Journal of Psychiatry, in press
1181
creasing capacity to prevent death after injury to the central nervous system may alsolead to an increased preyalence of organic mental disorders. Although methods for primary prevention of many neuropsychiatric disorders are well defined, acceptable to communities, and of a cost that even poor countries can afford, prevention of such disorders is still neglected in many national health programs, mainly because of economic difficulties, the lack of awareness of possibilities for prevention, and the low ranking ofmental health programs on the scale of values of individuals and societies (1,2). When disease does occur, a significant array of treatment methods can prevent or diminish possible impairment. Recent long-term followup studies have shown that even with current treatments, many persons experience a significant improvement in their condition and can expect many years of disease-free life. New, even more effective treatment methods will probably be developed in the near future. Unfortunately, however, appropriate treatment and rehabilitation are still not applied on a broad enough scale, for reasons ranging from ignorance and poverty to negligent attitudes and inappropriate health service structure. As a result, there are and will continue to be-at least for a few more decades-people in whom disease will not be prevented ad who will experience impairment because their treatment was suboptimal. Their numbers are difficult to estimate, but it is likely that currently at least onequarter of all disabled people are disabled due to a mental or neurological disorder; thus at least 150 million people worldwide are incapacitated
because of these disorders. The world of today is complex, and its socioeconomic changes are rapid. Changes in the distribution of labor and in the position of women, the development ofnew technologies for information management and industrial production, and the growing dehumanization of medicine and social services conspire against a decent survival of those who are less able. Many jobs in industrial societies require considerable education that is often not accessible to persons who are impaired. The shrinking size and lessened cohesion of families and communities weaken social support networks for disabled persons, and competing priorities render creation ofsuch networks improbable. Financial crises make major investments in re-education and job or social placement increasingly difficult. As a result of these fitctors, rehabilitation of the 1 50 million or more people impaired by mental illness has become more of a problem than it would have been a few decades ago. Whatever insufficiencies in resources the rehabilitation programs had yesterday will become worse tomorrow. Rehabilitation has to be fundamentally rethought-reinvented in a new manner. Ifthat does not happen, society as a whole will be ethically diminished and slowed in its economic progress. Reinventing a process is best done together with all who are involved in it. Psychiatrists, psychologists, and other mental health workers should be joined by representatives of other disciplines, including sociology, anthropology, law, economics, education, and public health. In addition, representatives of sectors other than health, and in particular social welfare, planning, and education, must be involved if programs are to be realistic and useful. Consumers of rehabilitation services have already become part ofplanning bodies in some settings. It is hoped that their involvement will become the rule rather than the exception. Changes in our notions about rehabilitation are not likely to happen by themselves or to happen quickly unless we begin to question them actively. The following five proposed conceptual changes
1180
December
Hospital
The Chronic
Patient
Rehabilitation
and Quality Norman
Sartorius,
of Life M.D.,
Ph.D. Rehabilitation means restoring or creating a life of acceptable quality for people who suffer from a mental illness or who have impaired mental capacity that causes a certain level of disability. Improving the quality of life is a tall order because of the stigma attached to mental illness, the large numbers of people concerned, and the important role that mental functioning-itluding, for example, the capacity to iearn, to acquire coping skills, and to be motivatedplays in all relalilitation efforts. The frequency and severity of impairment due to mental and neurological disorders have changed over the past few decades and are likely to change further. On the one hand, there are good reasons to believe that the incidence and prevalence of certam mental disorders will grow in the years to come, while on the other hand it has been shown that primary prevention is possible in a large proportion of cases. An increase in incidence and prevalence can probably be predicted for most of the affective disorders and for mental disorders resulting from new diseases such as AIDS. The extension of life expectancy of those who have mental disorders and the aging of ihe population will likely increase the prevalence of numerous other mental diseases, such as dementia. The in-
1992
Vol.43
No.
12
and
Community
Psychiatry
illustrate what we may wish to think about. First, the goal of rehabilitation must become the improvement of overall quality oflife as perceived by patients and their immediate fmilies. Subsidiary goals could be employment or integration into a community, but these goals should not be seen as imperative norshould their attainment be seen as the sole or main indicator of success ofthe rehabilitation process. A sizable proportion of the world’s population will not have to work in the near future and will not be able to find work. Increases in economic productivity and advances in technological development have already made many ofthe projections ofthe size ofthe labor force obsolete, yet attitudes toward those who are not employed (for example, housewives) remain atavistic, producing a fuse labor market and creating misery and lessened self-esteem among those who do not have a formal job. Success in finding a job is still considered confirmation ofa person’s worth, even ifit provides less money than an unemployment subsidy and means additional financial losses due to the need to hire a person to do chores around the house or on the ftrm. Social productivity, help and support to others, the upbringing of children, creative art, and the many other activities that have made our civilization and keep our society distinguishable from herds of animals are given incomparably less attention, respect, and reward than traditionally structured jobs. A change of attitudes in this respect will be of vast importance for society as a whole. It will also help impaired persons in ways that no previous effort to help them has done. Achieving such a change of value systems is worth all the investment we can make, and it will take all that we can give it. Related to this change is the change of attitudes toward work in relation to leisure. Schools and media still speak of leisure and work as two opposite states rather than as two interchangeable modes of spending our time. It is drilled into people that work means chores and leisure is pleasure. Newspapers advise on flower arrangements for the home
but not for the office; there are books and courses on use of time at work but not about ways to use leisure time and to deal efficiently with time, with emotional needs, and with the needs of others. People are not likely to be rewarded for being very good at using their leisure time. Nor are they taught how they can learn to like their work better, look forward to it, and consider it relaxing. Second, rehabilitation should not be done/or people with impairments but with them. Ifquality oflife is to become a central criterion of success of health services and rehabilitation efforts, the opinion of those whose life is being changed must become the decisive factor rather than remain an interesting observation in the rehabilitation process and in the assessment of its effect. Bringing the perceptions ofimpaired persons, of their families, and of their communities (including health service agencies) into harmony requires conscious attention and much effort. The compromise solutions will often be lacking in elegance and will not follow the rules. Sometimes they will be so messy that accepting them will require much tolerance, advocacy, and understanding by all who deal with the problems of impaired persons. Third, people are different, and their stations in life usually reflect the differences. Impaired people are no exception to this rule. Their inability to do some things may make them ineligible for certain jobs, and their preference for certain life styles may make their adaptation to community averages or some set of ideal rules impossible. The consequence is that health workers and others involved in rehabilitation must be tolerant of differences and seek ways to match situations to people just as much as they try to make people fit situations. They must stop assessing the outcome of treatment or rehabilitation by the patients’ ability to abide by predetermined, rigid, and unjustified “normal” rules of behavior; there is no correct time to go to bed, and few persons in a country have such excellent qualities that they can be its president. Fourth, disabled people and their impairments change over time. Re-
Hospital
December
and
Community
Psychiatry
1992
Vol.43
No.
12
habilitation and support for people with problems must take into account such changes and the changes in the world in which they live. Firmly established doctrines in the field of rehabilitation are unlikely to be helpflil. Rehabilitation is a long-lasting process, and rehabilitation workers will have to keep reinventing their rules to accommodate the people they are helping while all are moving forward in time. Fifth, the closer we come to understanding rehabilitation as an intervention to improve the quality of people’s lives, the more difficult it is to see reasons for a strict distinction between services dealing with rehabilitation and those aiming to help people in other ways. This connection exists not only between health and rehabilitation services but also between these services and other community efforts, such as those involved in urban renewal. The conversion ofa rehabilitation specialist into a community agent and vice versa does not mean that the specific skills that both have should disappear. Rather, it means unity of purpose and aim, which gives rehabilitation higher priority and makes community work to improve the quality of life more comprehensive and humane. The changes in concepts and attitudes described here can come about only ifpeople ofdifferent professions and cultural backgrounds join hands in their effort to improve the lot of mentally and physically impaired people and ofall those who suffer the consequences of disease. The awareness that they are not alone will give these professionals and everyone else involved the strength to continue building and implementing new strategies and practices to help impaired persons live lives of acceptable quality.
References 1.
2.
Prevention of Mental, Neurological, and Psychosocial Disorders. WHO doc A39/ 9. Geneva, World Health Organization, 1986 Sartorius N, Henderson AS: The neglect of prevention in psychiatry. Australian and New Zealand Journal of Psychiatry, in press
1181
