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Psycho-social aspects of tuberculosis : a study of cases in a low income group in a selected area of… Tadych, Mary Philomena 1952

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PSYCHO-SOCIAL ASPECTS OF TUBERCULOSIS A Study o f Cases i n a Low Income Group i n a Selected Area o f Vancouver  by MART PHILOMEHA TADYCH  Thesis Submitted i n P a r t i a l Fulfilment o f the Eequirments f o r the Degree of MASTER OP SOCIAL WORK i n the School of S o c i a l Work  Accepted as conforming to the standard required f o r the degree of Master o f Social Work  School o f Social Work  1952 The University of B r i t i s h Columbia  ii TABLE Or COH!EEirTS Chapter 1,  The Problem of Pulmonary Tuberculosis.Today Page  Historical perspective. The contemporary problem. Epidemiol logical principles. Importance of environmental factors. Modern methods of diagnosis and treatment. Importance of the cooperation of the patient. The psycho-somatic approach to i l l n e s s . The role of the medical social worker...... Chapter 2.  The Sample Group  Locale of the study. Seasons for choice. Ha tore of the sample. Method of case selection. Age and sex distribution. Family context. Besearch material used. Study of case records. Social characteri s t i c s of the group. "Racial origins. Occupations. Economic status. Housing. Classification of extent of tuberculosis at diagnosis. Duration of hospitalization and illness. Existing services for the tuberculous in B. C . . . . . . . . ..................................... Chapter 3.  Problems of the Tuberculous Patient as an Individual  Acceptance of the diagnosis. Individualized orientation to the illness. Adjustment of daily living habits to the regime of rest, graduated exercise and precaution techniques. Acceptance of medical care and hospitalization. Possible surgery. Economic adjustments. Conflict regarding acceptance of social assistance. Changes in family relationships. Acceptance of the dependency role. Physical and psychical separation from family. Substitute care for children. Rehabilitation. Vocational retraining. Locating of suitable employment. Illustrative case material. Evaluation of factors determining success or failure......,, ,..................... Chapter 4.  55  Problems of the Disease from the Standpoint of the Eamily  Acceptance of the implications of the diagnosis. Understanding of and cooperation in the treatment plan. Acceptance of the necessary changes in family roles. Effects of patient»s long absence from family. Changes i n family's economic status. Difficulties of management on social assistance. Problems in daily management of the illness when patient i s in the home. These difficulties intensified by inadequate housing. Viewpoints of patients and their families. Illustrative case material. Examples of successful and unsuccessful management. Evaluation of factors i n v o l v e d . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Chapter 5o  31  88  Problems of the Disease from the Standpoint of the Community  Tuberculosis as a major public health and welfare problem. Community responsibility for the development of a comprehensive tuberculosis control programme. Essentials of the programme. "Responsibility for the development of ancilliary social services. Community*s part in the rehabilitation of the tuberculous. Provision of opportunities for suitable employment. Special problems of patients living alone. Problem of the uncooperative patient - a community menace. Illustrative case material. Devising a successful approach to the uncooperative patient •» a challenge to the c o m m u n i t y , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  99  iii Chapter 6.  The Tuberculosis Control Program of the Future Conclusions and Recommendations  Evaluation of the present tuberculosis control program i n B. C. Importance of the multi-therapeutic approach. Implications for the development of existing medical and social services. Importance of the role of the medical social worker i n the individualization of services. Specific recommendations regarding medical services, medical social work, public health services, social assistance, rehabilitation services and voluntary social agencies' services....  Page  112  Appendix Appendix A  Table 1. Table 2.  Bibliography  TABLES AND CHARTS IS THE TEXT (a) Tables Social Service Exchange Registrations regarding patients and families i n the sample group.....  38  Distribution of tuberculosis cases i n the sample group according to age and sex......................................  40  Table 3.  Family context of patients i n the sample group©................  4l  Table 4.  Status of families with children... ............................  4l  Table 5«  Racial origins of the sample group.............................  42  Table 6.  Occupations of male patients..................................  44  Table 7.  Occupations of female patients..............  44  Table 8.  How cases i n the sample group came to be diagnosed.............  Table 9. Table 10.  Acceptance and non-acceptance of hospitalization by the group. Economic status of patients who did not accept social assistance. ...... •  57 69 75  Fig.  1.  (b) Charts Map of Vancouver showing social areas.  Fig.  2.  Map of Vancouver showing Social Area 3 and Strathcona Area.,..  Jig.  3.  Classification of extent of tuberculosis at d i a g n o s i s . . . . . . . 4 7  Fig.  4.  Length of illness i n the sample group...........  Fig.  5*  Length of hospitalization..........  70  Fig»  6.  Incidence of breakdowns i n the group.•  87  Fig.  7.  Incidence of sputum-positive cases i n the group. ............ eo  32 35  47  100  iv ABSTRACT This study examines the psycho-social aspects of tuberculosis in a low income group in an urban setting. The locale chosen was Social Area Three of the City of Vancouver. Part of this area known as the "Strathcona District" was surveyed in 1947 by a University of British Columbia team, of which the writer was a member, as part of a demonstration slum clearance project. This group was specially selected to give clearer focus to the important "residual area" problem in tuberculosis control, namely, that large group of the tuberculous i n whom the interaction of the emotional aspects of illness and defects in their material environment combine to make them the hard core of the tuberculosis problem and of many other social problems in the community. A general perspective for the study i s drawn from tuberculosis and social work literature from North America, Britain and Scandinavia. The details of the study are based on the case records of seventy-nine people aged eighteen to f i f t y who were almost one hundred per cent of the diagnosed cases of active tuberculosis in the white races living in Social Area Three of Vancouver in;August, 1948. The case l i s t was compiled from the f i l e s of the public health .nurses of the Metropolitan Health Committee. The Social Service Exchange registrations of patients and their families were followed up and a total of one hundred and eighty seven case records were read. Information from home interviews with selected patients was also utilized. In terms of social characteristics the sample includes; (a) patients in family settings and, (b) unattached men living alone, who numbered one quarter of the group. The group as a whole were near the border-line income brackets, but might never have Become social l i a b i l i t i e s but for their tuberculosis. The problems presented by the disease to the patient as an individual, to his family and to the community are then discussed. The importance of the personality of the patient as a factor i n illness i s stressed, and the role of the medical social worker i n diagnosis and treatment i s outlined. Illustrative case material i s utilized. The study indicates that the three most important factors determining the successful management of tuberculosis are: (a) the existence of f a c i l i t i e s for finding, treating and rehabilitating cases, (b) adequate ancillary social services for the treatment of the social aspects of the disease, (c) the degree of cooperation of the patient and his family i n the treatment plan, which cooperation i s largely determined by their degree of emotional maturity. The problem of patient non-cooperation i s found to stem mainly from lack of sufficient services to meet primary human needs. Because of this lack the l i f e experiences of most people i n the group i n their formative years had not been conducive to the development of the requisite emotional maturity for dealing constructively with the problems of chronic illness. There i s evidence that the weakness of the rehabilitation services in British Columbia vitiates much of the excellence of other treatment facilities. The principle conclusion drawn from the evidence i s that the prevention and control of tuberculosis are inextricably interwoven with many other social problems, including poverty, bad housing and family insecurity, which mast be attacked i n their entirety i f advances i n tuberculosis control are to be continued. Poverty, in particular, shows up i t s paramount importance i n the perpetuation of tuberculosis as a major health and welfare problem. Specific recommendations are made regarding changes in legislation, medical services, medical social work, social assistance, rehabilitation services and voluntary social agencies services. Many of these recommendations would have valid application i n the treatment of other chronic illnesses.  V  ACZHOWLEDGMEiMS  I am indebted to many people for their assistance in the compilation of material for this study, especially to the following:- Mrs, ._. Granstrom, Secretary to the Social Service Exchange; Miss M, Gourlay, Director of Welfare, City Social Service Department; Dr. W. ^H. Hatfield, former Director of Tuberculosis Control for the Province of British Columbia; Miss M. McKenna, Medical Section, City Social Service Department; Miss M. Shields, Unit Supervisor, Unit 1 of the Metropolitan Health Committee; Miss H, Sutherland, Director of Social Service Department, Tuberculosis Control Division; Mrs, J, Williams, Public Health Nurse, Unit 1 Metropolitan Health Committee. I would also like to thank the following agencies for permission to use their case records: Catholic Children's Aid Society; Children's Aid Society; City Social Service Department; Eamily Welfare Bureau; Metropolitan Health Committee, Division of Tuberculosis Control, Provincial Board of Health; Social Service Exchange; and Vancouver General Hospital. I am also indebted to those patients who welcomed me into their homes and allowed me to share their feelings about their illness. Especial thanks are due to Dr..Leonard Marsh of the School of Social Work, University of British Columbia, for much helpful criticism and- assistance at a l l stages of the work.  PSYCHO-SOCIAL ASPECTS.GF TUBERCULOSIS A Study of Cases i n a Low Income Group in a Selected Area of Vancouver  CHAPTER 1.  The Contemporary Taberculosis Pro blem  The human race and the "bacillus tuberculosis have l i v e d together i n c o n f l i c t since the time of the e a r l i e s t known c i v i l i z a t i o n s . has so intrigued mankind, nor continued  to b a f f l e men  disease  l i k e t h i s one; and i t  i s s t i l l the most unpredictable and e r r a t i c of a l l diseases. k i l l e d more people than a l l the wars i n h i s t o r y .  Ho other  Tuberculosis  Only i n the l a s t  has  few  generations has the balance been t i l t e d more favourably on the side of man* The recent war years, however, have shown how  quickly ground gained i n the  struggle can be l o s t . There i s a widespread tendency today to regard tuberculosis with complacency as a "controlled" disease, the complete eradication of which i s within our grasp.  I t i s true that i t has yielded pride of place as 1  of the Men of Death", and i s now  "Captain  eighth on the l i s t of " P r i n c i p l e Causes of  Death" i n most countries of the western world.  Increase i n l i f e expectancy  i n these countries has n a t u r a l l y l e d to a predominance of diseases of the older age group, such as a r t e r i o s c l e r o t i c and heart diseases, as o v e r a l l causes of death,  Nevertheless,  tuberculosis i s the c h i e f cause of death i n the  f i f t e e n to f o r t y - f i v e age group i n these countries, and s t i l l the p r i n c i p l e cause of death i n the world today, taking a t o l l of f i v e m i l l i o n l i v e s annually, . The ravages of tuberculosis cannot be calculated by consideration of the mortality rate alone.  Only against the background of i t s morbidity  1© The o r i g i n a l use of t h i s phrase i s a t t r i b u t e d to John Bunyan,  2  can the disease he seen in i t s true perspective.  It i s estimated that tuber1  culosis disables at least ten times as many people as i t k i l l s , - It is this capacity for crippling disablement in the most productive and enjoyable years of l i f e that ranks the disease among the foremost social problems of our day. In British Columbia in 1951» there were 19,000 known cases out of a population of approximately one million.  These 19,000 would equal the total population  of a fair-sized B. C, city. ^Although improvements in living standards and developments i n public health measures have undoubtedly contributed to the reduction in tuberculosis mortality rates, the decline had begun at least a quarter of a century before the discovery of the bacillus by Koch in 1884, A.D.,  and before the i n i t i a t i o n  of specific public health measures and sanatorium programs anywhere i n the world.  The decline was also observed in countries which had not begun to carry 2  out vigorous control measures.  Authorities are agreed that the decline was  not due to any general decrease in the virulence of the bacillus - indeed, b a c i l l i isolated at the beginning of the century are s t i l l producing the same sort of disease. Nor i s i t due to the process of natural selection which, as 3  authorities agree, operates too slowly to account for the phenomenal f a l l which 4  has occurred.  The precise nature of the forces which have "been at work i s  1, Recent f i e l d studies i n Massachusetts indicate that there are approximately nine living cases to each death, as postulated by the Framirtgham Survey i n 1917. This evidence i s cited by Chadwick, Henry D. and Pope, Alton S, i n The Modern Attack on Taberculosis. The Commonwealth Fund, New York 1942, p. 4 2, Frost, W. H, "Age Selection of Mortality from T.B. i n Successive Decades". .American Journal of Hygiene. Sect. A 30$91~6 Nov. 1939 3 , Richi Arnold R. The Pathogenesis of Tuberculosis. Charles C. Thomas, Springfield, I l l i n o i s , 1944, page 884. 4.  Ibid., p. 886.  3 unknown, so It i s impossible to u t i l i z e or control them*  One theory i s that  general improvement8 in living conditions have raised people's resistance to communicable diseases in general, so that the bacillus i s now confronted by more resistive host tissue than formerly.  Other authorities point out that  infectious diseases tend to a f f l i c t mankind in cycles which have a span of years, or even centuries; so that i t is possible that our present advantage i s merely temporary or accidental.  Even i f this abatement from "natural" causes  continues, i t is not operating quickly enough to prevent the disease attacking millions of people i n our own and future generations. In an era when chronic diseases have come to the fore as the major cause of social dependency, tuberculosis control programs assume a new importance.  They have been in operation longer than similar control measures  for ether chronic illnesses.  They have, therefore, longer experience of the  complexities of the economic and social aspects of chronic Illness, and the technicalities of community organization and public health administration* They have had an unprecedented opportunity to develop the teamwork approach which i s characteristic of modern medical care.  The very nature of the disease  they have been fighting has led them to focus on the patient as an individual living in a family and a community setting.  The lessons they have learned  should be applicable i n the development of control programs for other chronic illnesses, such as a r t h r i t i s , heart disease and cancer, with which, apart from communicahility, tuberculosis has much i n common.  In a l l these diseases, early  diagnosis is an important factor in determining the success of medical treatment.  A l l of them involve lengthy hospitalization and rehabilitation, and the  protracted economic dependency and prolonged dislocation of personal and family living patterns which make chronic illness such a drain on the resources of the patient, his family, and the community.  In any community, success In tuberculosis control i s a good indicator of how successfully a community is tackling i t s social problems in general. In every country in the world, the tuberculosis mortality rate i s the most sensitive barometer of fluctuations in the living standards of the people.  It  is an accepted maxim that the lower the income, the higher the mortality rate from tuberculosis i n any given group.  "This inverse relationship between the  incidence of tuberculosis on the one hand, and the standard of living on the other", says one life-long student of tuberculosis, " i s one of the few tangible  1 facts to be found i n the whole study of the disease". It i s against the background of these facts that the choice of this topic was made. The study aims at a descriptive evaluation, through i l l u s t rative case material, of how a tuberculosis control program which i s reputedly one of the best in the world, i s actually operating i n relation to the people i t i s most intended to serve - namely, the low income group among whom the disease takes i t s greatest t o l l .  It i s hoped that the study w i l l provide some  basis for estimating the effectiveness of current services, and the areas where development and improvement seem to be indicated. The locale of the study, Social Area Three of the city of Vancouver, Canada, and the criteria for the selection of cases w i l l be described in a later chapter.  Before presenting the specific material of the thesis, i t i s  essential to review the principle facts about the disease i t s e l f , i t s epidemiology, and modern methods of diagnosis and treatments  1. Ustvedt, Hans Jacob, Pulmonary Taberculosis and i t s Treatment; John Bale, London, England, 19^2, p. 67» This hook, published in England during World War Two, was written by a Norwegian doctor and i s i n general representative of the Scandinavian approach to tuberculosis control.  Etiology.of. the Disease. Tuberculosis is caused by a minute microbe called the "bacillus tuberculosis . 8  It is an exceedingly hardy germ, protected by a waxy capsule  which makes i t resistive to drugs, and very difficult for the defences of the human body to destroy.  It i s extremely resistant to cold, dry heat and 1  disinfectants, but i t is: destroyed by prolonged exposure to direct sunlight. In moist, damp, dark places, i t can remain alive indefinitely, and has been found in the sweepings of dust from the rooms of tuberculous patients as long as three months after the patients have vacated them.  Boiling water k i l l s the  germ i n twenty minutes, however, and a five per cent solution of carbolic acid takes twenty four hours to. k i l l the b a c i l l i i n an average sample of sputum. The germ i s a parasite, for though i t may remain alive outside the bodies of men and animals for varying periods .of time, i t cannot multiply except In the suitable coil of the body of i t s host.  The bovine type of tuberculosis  germ, though different from the human type, can cause the disease in humans, and reaches them principally through the milk of infected cows.  Though i t can  attack the lungs, i t more often attacks the bones and the lymph glands of the neck.  This form of the disease i s comparatively rare i n British Columbia, due  to the excellent control of cattle herds and the almost universal pasteurization of milk.  This study confines i t s e l f to cases of pulmonary tuberculosis, because,  although the bacillus can and does attack any organ of. the body, i t shows a predilection for the lungs.  It i s the pulmonary, form which i s most common  and which has created the greatest social problems. Modes of. Infection.. The etiological agent of tuberculosis i s the germ i t s e l f . There can 1, ."Prolonged , i n this connection, means over twenty-four hours, as i t has been proved that the b a c i l l i can survive i n sputum lying i n the direct rays of the sun for at least twenty-four hours. tt  6 "be no tuberculosis without the germ. Where then, do the germs come from?  The  great reservoirs of tuberculosis germs are the bodies of the people'who have the disease.  Germs can leave their bodies i n the spray of moisture they emit  into the a i r when they talk, cough, sneeze or laugh, and can be inhaled into the lungs of others by what i s called "droplet infection?'.  It i s estimated  that germs emitted i n this way float in the air, alive, for varying periods of time up to several hours or more. Some authorities are of the opinion that  .  1  this i s the most common mode of transmission of infection.  The germ-soiled  hands of sick patients can contaminate their clothes, personal belongings, dishes and any article which they touch.  More intimate contact with others,  as for instance kissing, i s an obvious mode of transmission.  In twenty four  hours a sputum positive patient can cough into the a i r between one and four b i l l i o n b a c i l l i , not a l l of which Burvive, i t is true; but a considerable number of them w i l l remain alive indefinitely i n closed rooms, in dark damp places, or mixed with the dry dust of the streets, from where they can be carried into people's homes, alive, and deposited on floors and carpets, there to become a source of infection to children and adults alike.  It i s known, too, that  the "bacillus can be ingested in food or milk which has been contaminated by people with the disease, or by f l i e s which having ingested tuberculous-positive sputum, then excrete the b a c i l l i . It i s believed that most people - two out of three in Canada - have 2 become infected with tuberculosis germs at some time of their lives. Never1, Lovell, Robert G, Taking the Care; The Patient's Approach to Tuberculosis; The MacMillan Co. New York, 1948, p. 53. 2. These are the Canadian Tuberculosis Association figures for 1949. There i s wide disagreement among authorities both in Canada and elsewhere as to the extent of infection i n their adult populations. The only point on. which there i s agreement i s that infection is not ubiquitous as i t was a generation ago. No country has fig_res for their total population, but only for selected groups such as-school children, student nurses, where one might expect to find a proportionately high or low rate of infection.  titleless, not a l l infected people develop the disease.  Chest 2&-ray surveys  i n Canada and elsewhere show that a large number of people have a c t u a l l y had the disease without knowing i t .  I t has healed spontaneously without any  outwardly recognizable c l i n i c a l symptoms; yet the t e l l - t a l e scars on the lungs remain as evidence. World War Two,  When the Canadian armed forces were X-rayed during  ten cut o f every thousand showed tuberculosis scars, but only  three out of every ten required sanitorium treatment to help heal t h e i r lesions. The rest required only p e r i o d i c re-examinations and moderation i n d a i l y l i v i n g to ensure that t h e i r lesions remained s t a b i l i z e d *  What then are the factors  involved i n the t r a n s i t i o n from i n f e c t i o n to disease? There i s uniform agreement among a u t h o r i t i e s that, i n general, the fundamental f a c t o r which determines whether or not a c t i v e disease develops i n an infected person i s the inherent capacity of the infected body to r e s i s t the invasive powers o f the b a c i l l u s .  Other major factors, i t i s agreed, are  1 the virulence o f the p a r t i c u l a r s t r a i n of b a c i l l u s , the s i z e and frequency  2  o f the dose , and the mechanical factor o f the l o c a t i o n o f the o r i g i n a l lesion.  As regards the l a t t e r , the view i s that i f the o r i g i n a l l e s i o n occurs  a t a distance from a large blood vessel, i t may be walled o f f and cause so trouble; but i f i t occurs near one, i t may rupture into the blood vessel and cause a rapid spread o f the i n f e c t i o n .  I t i s t h i s factor which explains the  rapid involvement o f a whole lobe or sometimes even a whole lung a f t e r a 1* V a r i a t i o n i n virulence of d i f f e r e n t s t r a i n s of the same type of b a c i l l u s i s known to occur. Variations i n the same s t r a i n can occur depending on such factors as whether or not they have recently l e f t the r i c h s o i l o f a . hospitable human host or have been barely surviving i n the dust o f the street. 2* Animal experiments have proved conclusively that there i s a l i m i t to the number o f b a c i l l i that even the highest degree o f acquired resistance can successfully r e s t r a i n . See, Hich, op. c i t . p. 659  8  1  r e l a t i v e l y ' b r i e f period of symptoms as far as the patient i s concerned.  As these l a t t e r factors are a l l uncontrollable, most epidemiological study has been directed towards determining, i f possible, what factors influence the r e s i s t i v e powers of the i n d i v i d u a l . Factors Influencing the .Besistive Powers of an. Individual. This i s one of the most controversial areas i n the whole f i e l d o f tuberculosis epidemiology. which are now  There i s general agreement that a l l the factors  to be discussed are involved to some degree*  But there are widely  d i f f e r i n g , and even contradictory viewpoints as to the comparative weighting to be accorded to each, either i n an i n d i v i d u a l case or i n the population at large*  Nevertheless,  t h e i r influence i s too well acknowledged to he d i s -  regarded i n any tuberculosis control program* Age  i s undoubtedly a factor, i n the sense that people are more  vulnerable at c e r t a i n l i f e - p e r i o d s than others*  In the f i r s t few months of  l i f e children are e s p e c i a l l y susceptible, but t h i s s u s c e p t i b i l i t y tends to decrease i n early infancy, and incidence i s a c t u a l l y lowest i n the three to twelve age group*  Puberty brings increased s u s c e p t i b i l i t y *  In women, the  highest incidence occurs i n the twenty to twenty-five age group*  In men  the  f i r s t peak i s reached a decade l a t e r than In women, and there has been a growing tendency i n B, C. and elsewhere f o r the incidence curve i n males to reach a  2 second and even higher peak i n a l a t e r decade o f l i f e . 1, H a t f i e l d , W. H,: B.C., 19^4, p* 26. \.  Middle aged and  Handbook on Taberculosis. K i n g s P r i n t e r , V i c t o r i a , ,  2* One observer, Frost, points out that t h i s should not be interpreted as evidence o f a decreased resistance i n men i n the l a t e r years of l i f e , as i s sometimes supposed. I f the group aged f i f t y to s i x t y i n 1930 i s followed back to b i r t h , they f a l l within the age group which experienced the highest mortality rate, between twenty and thirty years, and are r e a l l y residuals o f higher rates i n e a r l i e r l i f e , W.H. Frost: "Age Selection o f M o r t a l i t y from Tuberculosis i n Successive Decades": American. Journal o f Hygiene. Sect, A 30; 91-96, November, 1939.  elderly women, on the other hand seldom develop tuberculosis. Eace i s undoubtedly a factor, though i t s comparative importance i s difficult to evaluate.  Although Africans, Negroes, Asiatics, American Indians  and Eskimos at present show greater susceptibility, this does not necessarily mean that their ultimate capacity to acquire resistance to the bacillus may not prove to be as great, or even greater than the white man's, when they have been exposed to the bacillus for as long a period historically as has the white man, who f i r s t brought the germ to their lands.  Nor i s i t possible to estimate  how much i n these groups their inherent natural capacity to resist the ravages of the disease is being undermined or at least being held i n check by the appalling social and economic conditions which are generally found among these people.  Share i s the additional factor of the stresses occasioned by the  violent change-over i n mores which has accompanied their transition from nomadic l i f e to reservation l i f e and from rural to urban l i v i n g . It has not been proved that any particular occupation predisposes a person to tuberculosis, except those involving exposure to s i l i c a dust and granite dust.  These do not increase the virulence of the b a c i l l i but they  provide conditions i n the lungs which suable the b a c i l l i to multiply rapidly once they have invaded the body tissues. Physical overstrain, whether i n work or play can be a factor i n the development of disease following a primary infection.  Fatigue lowers the power  of the body's defender cells to fight any bacteria which may gain entrance to the body, including bacillus tuberculosis.  Excessive movement and bodily  exertion increase both circulation and respiration and these assist i n extending 1, There i s , however, some evidence to suggest that single, divorced and separated women earning their own living are more susceptible according to an a r t i c l e by Dr. Norman Macdonald: "The Social Aspects of •Tuberculosis", i n The Almoner. Vol. 2. No. 7. October, 1949: p . 148.  10 the areas of infection. Most doctors believe that mental and emotional strain, such as anxiety, and grief can be, and actually are i n some cases, important factors influencing the transition from infection to disease.  However, as psychiatrists point out,  the mere presence of an upsetting event or situation in a patlent*8' l i f e does not necessarily imply that i t has pathogenic significance, unless i t can be shown that i t affected a patient  specifically.  "Whether or not an external event can be regarded as a precipitating factor does not depend on i t s dramatic quality, but rather on i t s specific character, A. grain of sand may upset the smooth running of the wheels of a machine i f the machine i s such as to he upset by grains of sand. Or precipitating events may not be traceable at a l l , because, in the absence of any specific event i n the patients outer world, conflicts i n their inner world may have to come to a climax, and thus the stage may have been set for the onset of a psychosomatic disorder.**^ 1  The relationship between personality conflicts and pulmonary disease has been the subject of much investigation in recent years.  One English  observer, Dr. George Day, after many years work in sard tor i a which catered to patients of the economic middle class, - ministers, school teachers, and other such professional people - came to the conclusion thats"Those who develop the disease i h the absence of the classical physical environmental causes, such as poverty, often do so because of some disease i n their psychological environment, in their relation to themselves or to the world o u t s i d e . . . . . . . In psychological distress, the patient as a whole i s ready to be i l l , i n fact i s already i l l , and the ubiquitous b a c i l l i , both indogeneous and exogenous are there ready to o b l i g e . . . . • Is i t more than just chance that their tissues are so hospitable?" • As a result of some of the investigations in this f i e l d , some r e searchers have concluded that the personalities of tuberculous patients have 1, Wittkower, Erics A Psychiatrist Looks, at Taoerculosis. The national Society for the Prevention of Tuberculosis, London, 1949, P» 107 2, Day, George, *?Some Observations on the Psychology of the Tuberculous", The Lancet. 16th November, 1946, p. 703  11 certaia features i n common, and have begun to talk about "the tuberculous personality".  This view has not had general acceptance, however. One of the  most thorough investigations of this kind was made by a British psychiatrist, Eric Wittkower, who made an intensive survey of 300 patients, drawn from a l l social classes, each of whom underwent a psychiatric examination of at least two hours duration, and often with repeated further examinations.  His con-  clusions were that:n  An inordinate need for affection i s an outstanding common feature of the premorbid personality of tuberculous patients. This need for affection may be openly expressed, thinly disguised, well concealed or f l a t l y denied* Coupled with i t are conflicts over dependence..... A person's mode of upbringing determines what character defences i.e. what mode of behaviour he adopts. .According to their prevailing behaviour pattern, the patients were classified as overtly insecure (sub-groupss over*dependent, leaning, self-assertive) rebellious, selfdriving and conflict-harassed types.*.. In brief, individuals who develop tuberculosis seem to have i n comman an Inability to deal adequately with their aggressive impulses, and are prone, though for various reasons, and i n different ways, to turn against themselves.*^  As Wittkower gees on to point out, the psychological mechanisms which he has identified represent an attempt to explain the reasons behind the unhealthy mode of l i f e , and the common features i n the mental upsets which, as many doctors have observed, often proceed the onset of the symptoms of tuberculosis.  They i n no way invalidate the relevance of other important  etiological factors, such as adverse living conditions, "They do however, help to explain why a person f a l l s i l l and • why he f a l l s i l l when he does, but they f a i l to explain why he f a l l s i l l with pulmonary tuberculosis. In the light of our present knowledge, consideration of this point, though attractive, can only be tentative."  1. Wittkower, Eric, op. c i t . pp. 136-137 2. Ibid. p. 137  12 With that view, the present writer would concur.  Hone o f the other l i t e r a t u r e  which was read seemed to j u s t i f y any general conclusions i n t h i s matter. Pregnancy though a natural and normal function, was formerly thought to impose s u f f i c i e n t s t r a i n on a woman to lower her natural resistance to tuberculosis considerably; and i t i s observed that many women succumb to tuberc o l o s i s during or following a pregnancy.  The occurence of pregnancy i n a  tuberculous woman was i n i t s e l f once considered s u f f i c i e n t i n d i c a t i o n f o r a therapeutic abortion.  More recently, on the basis o f numerous studies, i t has  been concluded that i t i s the s t r a i n o f nursing the c h i l d and attending to household duties i n the months following ..confinement that tend to a c t i v a t e a tubercular l e s i o n .  Nowadays, with proper care, including h o s p i t a l i z a t i o n three  months before confinement and s i x months a f t e r , i t has been found p o s s i b l e to carry a tuberculous woman through a pregnancy without r e a c t i v a t i o n or exacerbation of her disease. War,  which imposes s t r a i n s o f various kinds, i n v a r i a b l y causes an  ascending tuberculosis r a t e .  I t causes more o f those infected with the b a c i l l u s  to develop the disease, and causes a more rapid and progressive course i n those who already have a c t i v e disease.  In combatant countries i n World War One tuber-  .culosis mortality rates increased between 20$-100$, the increase being prop o r t i o n a l to the p r i v a t i o n s suffered by the p a r t i c u l a r populations.  In Germany  the rate f e l l between 1919 and 1921, but rose almost to war l e v e l s again i n  .1 1922-3, when food was d i f f i c u l t  to obtain, and economic depression was r i f e .  Traumatic tuberculosis, or tuberculosis following an accident or injury, i s often a t t r i b u t e d d i r e c t l y to the i n j u r y .  But to get the disease,  the b a c i l l u s must become implanted i n the body's tissues, and the chances o f 1. Chadwick and Pope,  op. c i t . p . 31«  13 this actually occurring i n the course of the injury are exceedingly remote, Nevertheless, the strain and shock of such an experience might activate an existing lesion* Personal hygiene and daily mode of l i f e can he an adjunct towards maintaining good health or an invitation to poor health, according to whether one i s moderate or immoderate in daily habits of food, sleep, rest, exercise, work and play.  The correlation between chronic alcoholism and tuberculosis i s  largely explainable on this basis*  So too, i s the striking correlation be-  tween mental illness and tuberculosis*  The fact that tuberculosis occurs more  frequently among this group than in the population at large i s an indication of how the neglect of sensible daily living habits, which i s often an early symptom of mental illness, has other consequences of serious social significance*' Some of the most controversial discussions among tuberculosis authorities centre around proper evaluation of the role of the hereditary factor i n the development of active tuberculosis*  Before Koch discovered the  bacillus, the hereditary factor was considered the principal one i n epidemiology, and the role of the contagious factor tended to be overlooked*  Koch's discovery  caused the pendulum to swing to the opposite extreme, and u n t i l recently, the Importance of, and even the existence of the hereditary factor has tended to be ignored*  As a result of contemporary studies, i t i s now known that espec-  i a l l y high or low resistance to tuberculosis can be transmitted by heredity* Studies made i n U.S.A. indicate that children of tuberculous parents contract tuberculosis twice as frequently as children of non-tuberculous parents, nd a  that the incidence among spouses of tuberculous patients, while higher than i n the general population, i s not so high as might be expected.  Canadian ex-  perience can cite the example of those Canadians who endured the privations of the Japanese Prisonei^-of War Camps. Some of them showed remarkable resistance  14 to the bacillus, and did not contract the disease i n spite of intimate daily contact with sputum-positive cases under the most adverse l i v i n g conditions, 1 The factors involved i n the inheritence of resistance are complex , and cannot, i n our present degree of knowledge, "be explained. Inherited resistance may he the decisive factor i n an individual case, and i n certain circumstances, in determining whether an infection results i n eventual disease.  But i t does not thereby follow that i t i s the chief factor  governing incidence of tuberculosis i n the population as a whole. I f i t were, i t would radically alter the modern approach to tuberculosis control. Hbr i s i t always the most important factor governing the development of active tuberculosis in an Individual case, as some authorities have contended*  Some of the  most thoughtful students of tuberculosis epidemiology consider that the real problem l i e s In the accurate weighting of the influence of the hereditary factor, against the influences of a l l the various environmental factors which might alter the level of both native and acquired resistance, and depress them to the point where they could not withstand the invasive powers of the bacillus* Importance of Adverse. Socio-economic.Conditions, in Lowering Resistive Powers. • There has already been some discussion regarding the non-medical factors governing human resistance to tuberculosis. Discussion of the most 1* One American researcher, Irwin, found that even after sixty generations of brother-sister matings in animals, marked differences in individual resistance to tuberculosis were s t i l l present* Two others, Wright and Lewis, thought that 50$ - 60$ of the variations in resistance that they observed i n their cross-breeds were unexplainable on the basis of heredity, and were due to unknown factors. This and other evidence which he cites, compels Rich to say "We are in no position to state, even approximately, the degree to which heredity may influence the incidence or mortality rate of tuberculosis i n man. Any extremist view of this most important question i s decidedly unwise, and probably mistaken ** Rich* op. c i t , p. 136. 1  15 important environmental factor has purposely "been l e f t to the l a s t .  In the  writer*s opinion i t proveB conclusively that the importance of the hereditary factor i s , for a l l practical purposes, distinctly subordinate to the very real importance of those environmental factors which can be grouped under the heading of "socio-economic conditions", and which, unlike our hereditary constitutions, we can i f we wish, control to our advantage rather than to our disadvantage* A l l attempts a l l over the world to correlate tuberculosis and socioeconomic conditions, show that tuberculosis flourishes in poverty*  In a l l  countries the highest mortality rate i s at the lowest economic level,, and the lowest rate at the highest economic level*  When a community i s divided accord-  ing to income, there i s a noticeable correlation between increasing tuberculosis mortality and decreasing income*  1 2  Poverty, as one authority points out, i s a complex condition*  In  addition to inadequate income and the constant strain to trying to make ends meet, poverty usually involves inadequate nutrition and resultant lowered • resistance to disease i n general, hard work, Inadequate medical care, poor housing, and possibly ignorance of good health habits, anxiety, insecurity, frustration, discouragement and apathy* ing authorities, .ie n  "Poverty, therefore", say two of the lead-  3 the predisposing cause of tuberculosis".  1* Occupation, used as a guide to income was u t i l i z e d in the Whitney Survey in U.S.A. i n 1934, using material compiled from the U*S.A. census bureau in 1930 to estimate tuberculosis mortality rates in males aged 16>60* It showed that even allowing for the inevitable errors in classification* the mortality rate among unskilled workers was more than twice as high as i n skilled workers and foremen; three times as high as i n clerks, and six times as high as i n professional men. 2* Pinner, Max: Pulmonary Tuberculosis in the Adult. Chas. C. Thomas, Springfield, I l l i n o i s , 1945. p. 516 3* Chadwick and Pope. op. c i t . p* 31  16 Of a l l the factors associated with poverty, poor nutrition i s considered to he the most important in the relation between low standards of l i v i n g and tuberculosis.  It is'true that some poor people who develop the disease  may be comparatively well«fed, but i n dealing with tuberculosis epidemiology It must be remembered that any. one factor may be outweighed by a combination of others.  The importance of adequate nutrition in resistance to tuberculosis was  well illustrated by the experience of neutral countries i n World War One,  In  those affected by the blockade a rise i n tuberculosis mortality occurred; i n those unaffected or only intermittently affected, tuberculosis mortality declined.  Even i n combative countries, there was a lower mortality i n agricult-  ural countries l i k e Hungary than in highly urbanized countries like Germany* The example of Denmark's experience illustrates most graphically of a l l the importance of nutrition i n tuberculosis control* Daring the f i r s t three years of the war the Danes exported most of their dairy produce to combatant countries.  Though highly profitable commer-  c i a l l y , this drained the home market, and the tuberculosis mortality rate rose over twenty-five per; cent though l i v i n g conditions were practically unchanged. In 1917,  when German submarines cut Denmark off from her export markets and  the Danes had to l i v e on their own produce, in one year, 1918,  the tuberculosis  1  mortality rate f e l l to pre-^rar level.  Poor housing i s universally recognized as an important factor in the spread of tuberculosis, because i t usually involves poor sanitation, poor ventilation, inadequate, f a c i l i t i e s for garbage.disposal and overcrowding; a l l of which tend to increase opportunities for infection and facilitate transmiss ion, 1,  English researchers have shown that there i s a definite correlation Gited by Eich,  op. c i t . p.  224.  17 between density o f population and tuberculosis, and a s i g n i f i c a n t r e l a t i o n s h i p  1  between the number of persons.per room and incidence of tuberculosis* slum clearance project at Liverpool, England, i t was noted that i n the  In the new  housing estates b u i l t i n the same areas as the old, and rehousing the same fami l i e s that had previously l i v e d there, the tuberculosis mortality rate f e l l from 2 4.00  per thousand to 1.9 per thousand.  Influence o f T o t a l Environment on the Development of Tuberculosis. This i s s t r i k i n g l y i l l u s t r a t e d by the findings of a group o f South A f r i c a n physicians.  In a survey of some 20,000 Bantus i n Hatal they found that  differences i n the incidence and type of tuberculosis i n these people o f uniform r a c i a l stock were d i r e c t l y associated with the conditions under which they l i v e d  3  and worked.  In those Bantus l i v i n g on the reserves, the i n f e c t i o n rate  between 40$ and 50$,  was  and cases of a c t i v e disease were few; i n those l i v i n g on  the Mission Beserves, where l i v i n g conditions were crowded and there was more contact with the outside world, the incidence o f active progressive tuberculosis was  three times as high; i n those l i v i n g i n the peri-urban areas where there  was  not only over-crowding i n t i n shanties, but inadequate n u t r i t i o n as w e l l , the incidence again rose and the proportion of progressive primary and severe re** i n f e c t i o n types of i l l n e s s was much higher; i n the urban areas, where there was  gross overcrowding, d e f i c i e n t d i e t and i n a d d i t i o n heavy p h y s i c a l work,  the i n f e c t i o n rates were 70$ -80$,  and the morbidity rates s i x to eight times  1* A Glasgow Survey showed that the i n f e c t i o n rate i n one and two roomed houses was double that i n three and four roomed houses. 2.  Hatfield,  op. c i t . p.  30.  3* Dormer, B. A.., IViedlaiider, J . , and Wiles, J . "F. "A South A f r i c a n Team looks,at Tuberculosis" i n the Proceedings of the Transvaal.Mine Medical O f f i c e r s * Association. Nov. 1943. c i t e d by Chadwick and Pope, op. c i t * p. 34.  18 as high as among the Bantus on the native reserves.  The authors stated "that  i n this case the conclusion that the determining factors i n the development of tuberculosis in an infected population are environmental seems, inescapable." There i s enough evidence i n the annual statistics of countries of Western civilization to merit the conclusion that adverse  socio-economic  conditions are of paramount importance i n the perpetuation of tuberculosis as a major public welfare problem. The Hature of the Disease... In order to understand modern treatment of tuberculosis i t i s necessary to have some understanding of what happens when the germ invades the body tissues.  As soon as the b a c i l l i enter the lungs, Injury to the tissues begins,  or can begin.  At once the body's defender cells challenge the invaders.  Depending on the strength of the body's resistive powers,-the patient may suffer a mild c l i n i c a l l y unrecognizable form of the disease, which nevertheless leaves tell-tale scars visible on the x*ray plate; or a chronic illness of varying length and severity, in which the body eventually overcomes the invader; or ther disease may pursue a rapid and irreversible course towards death,  , : >,  The fierce battle between the body's defender cells and the invading b a c i l l i takes place.on the battleground of the lung i t s e l f which i s injured i n the process.  The poisons from the b a c i l l i and the dead defender cells are.,  damaging to the lung tissue.  This damaged tissue takes on the characteristic  nodule-like appearance known to medical men as the "tubercule", from which the disease gets i t s name.  The body forms cobweb-like strands of fibrous scar  tissue which i t wraps around each tubercule in an effort to wall off the invader and prevent the spread of infection.  Sometimes a further degree of healing  known as "calcification" takes place i n which lime salts are deposited to harden the tubercule further. The healing process i s not accomplished either easily  19 or quickly, and i t takes nature many months or even years to make the wall strong enough to hold the invader i n check permanently.  One o f the usual  accompaniments of t h i s lenthy process i s the "caseation" stage, during which the centre of the tubercule softens and undergoes l i q u e f a c t i o n and the " b a c i l l i multiply and spread. This softened material may coughed up from the chest.  "break into a bronchus, from which i t i s  A c a v i t y i s the space l e f t i n the lung by t h i s  softened tissue which has been coughed out.  When a patient i s coughing germs  from h i s body i n t h i s way he i s said to be an "open case". i n which germs do not leave the body i n t h i s  A closed case i s one  way.  Periods o f a l t e r n a t i n g l i q u e f a c t i o n and hardening are c h a r a c t e r i s t i c of the disease.  Infective material from the f i r s t cavity may  be aspirated  into other bronchial tubes and thus spread patches of i n f e c t i o n throughout one or both lungs, perhaps r e s u l t i n g i n further c a v i t a t i o n . I t i s quite possible for a patient to have a considerable degree of healing i n some c a v i t i e s and progressive l i q u e f a c t i o n i n others.  Hot u n t i l a l l c a v i t i e s and lesions are  healed i s a patient considered w e l l . Symptoms. Early tuberculosis i s u s u a l l y symptomless as f a r as the patient i s  :  concerned. . Since the use o f the x-ray as a diagnostic t o o l i n tuberculosis, i t has been r e a l i z e d that by the time the disease gives r i s e to c l i n i c a l l y recognizable  symptoms, i t i s no longer early,  l e s i o n s and even c a v i t i e s show  on the X-^ray p l a t e before the patient has begun to f e e l the lassitude and  the  vague malaise caused when the poison produced, by the b a c i l l i invades the blood stream. Chronic fatigue i s a symptom of numerous i l l n e s s e s ,  .Many people, r  recognizing that i n our hlghrpressure way of l i v i n g i t can be due to prolonged  20 emotional tension, often resort to self-medication with t h e i r f a v o r i t e tonic, or go on a vacation rather than f o r a medical check-up, when they are troubled by i t .  Other symptoms such as loss of weight, repeated colds, mild l a r y n g i t i s ,  mildly elevated temperatures i n the afternoon, upset digestion, constipation, shortness of. breath, aenemla, and ammenorrhea i n women are not generally considered by the average layman to be the accompaniments of e a r l y tuberculosis. Yet medical men are f u l l y aware of how  often these symptoms are part of the  early presenting p i c t u r e when the patient l a t e r gives h i s h i s t o r y .  These are  also conditions! which many people do not regard as s u f f i c i e n t l y serious to warrant prompt medical attention, and which, i t i s true, may  be e n t i r e l y unre-  l a t e d to tuberculosis. The occurrence of c h i l l s , night sweats, a persistent cough with sputum or mild hemorrhage are l i k e l y to prove s u f f i c i e n t l y disturbing to most people to influence them to consult a doctor. often quite f a r advanced.  By that time, however, the disease i s  Although the onset i s usually slow and i n s i d i o u s ,  i t can begin abruptly with high fever and hemorrhage, although t h i s does not mean that the damage i s necessarily greater than when onset i s more gradual. The s e v e r i t y of the disease cannot be judged by the presence or absence of the c h a r a c t e r i s t i c cough, nor by whether the cough i s productive unproductive.  Productive coughers may  be consistently sputum-negative, and  conversely, patients producing only small amounts of sputum may sputum-positive.  be h i g h l y  There i s u s u a l l y l i t t l e or,no sputum before the c a v i t a t i o n  stage i s reached, or i f there i s i t i s u s u a l l y negative f o r b a c i l l i ,  Never-  theless, some a u t h o r i t i e s , including H a t f i e l d , are of the opinion that a l l  1  patients with sputum should be regarded as i n f e c t i o u s ,  1,  Hatfield,  op, c i t ,  p,  or  21 Diagnosis* Diagnosis i s not always easy i n e a r l y tuberculosis, though with modem diagnostic a i d s , i t i s easier than i t used to be*  Many other diseases  cast on the X-ray similar shadows to tuberculosis l e s i o n s , and a d i f f e r e n t i a l diagnosis can only be made through the use of a d d i t i o n a l examinations and t e s t s such as fluroscopy, skin t e s t s , stomach lavage and sputum t e s t s . The blood sedimentation rate test, while not s p e c i f i c for. tuberculosis, i s an important a i d i n assessing the a c t i v i t y o f the disease, once  1 diagnosed. Modern Methods of. Treatment The aim o f a l l modern treatment f o r tuberculosis i s to a s s i s t the bodily defences to come into play, as f u l l y and e f f e c t i v e l y as possible i n order to overcome the i n f e c t i o n .  Any. inflamed organ needs r e s t .  the diseased lung must be given as much rest.as p o s s i b l e .  Therefore  This i s accomplished  through general r e s t o f the whole, body which includes bed rest plus mental r e s t i n the sense o f freedom from anxiety and from the ordinary r e s p o n s i b i l i t i e s o f everyday l i v i n g . utilized.  As an a d d i t i o n a l a i d , l o c a l r e s t o f the diseased lung i s often  This i s done through use o f one o f the modern medical or s u r g i c a l  procedures which w i l l induce p a r t i a l or complete collapse o f the lung, e i t h e r temporarily or permanently, and thus through shrinkage o f the lung area, a s s i s t i n the c l o s i n g o f c a v i t i e s .  When i t i s considered that the lungs i n the normal  a c t i v i t y o f breathing move about  25,000 times ft day, the value o f such a r t i f -  i c i a l forms o f r e s t can be appreciated. 1, There have been recent press reports about the discovery of two new blood t e s t s to detect a c t i v e tuberculosis by Dr. Gardner Middlebrook o f the "Rockefeller Medical Institute i n Hew York. These t e s t s are improvements on the former ones he devised f o r the same purpose. The new t e s t s are said to use two elements i n the patient's blood which can be checked against each other to determine a c t i v i t y o f the b a c i l l u s .  22 The most commonly used of the temporary forms of collapse i s a r t i f i c i a l pneumothorax, which i s a method of introducing a i r into the space between the pleura and the chest wall, thus collapsing the lung.  Air needs  to he replaced at intervals "because i t i s gradually absorbed into the body* Phrenicotomy, which i s a severing of the phrenic nerve either completely or partially, causes the diaphragm to rise and compress the lower part of the lungs, and can be used as a temporary or permanent measure* The most common of the permanent forms of collapse i s thoracoplasty, a major surgical procedure, usually done in three or four stages, in which the lung i s made to collapse by removal of part of the ribs on the affected side* The removal of a whole lung which i s called pneumonectomy; or of part of a lung which i s called lobectomy, are permanent and drastic measures which may be resorted to i n severe cases*  Which of these procedures i s indicated In an  individual case, and the timing of them so that the patient receives maximum benefit are matters of medical judgement* Drug therapy i s an adjunct to surgical treatment of tuberculosis, though i t can be used alone.  There has been a great deal of publicity given to  the modern wonder drugs, many of which have proved disappointing for use i n tuberculosis therapy.  The ever-resilient bacillus has, i n response to the use  of at least one of them, namely streptomycin, developed certain strains that are resistant to the drug, and one strain which i s believed to thrive only i n the presence of streptomycin.  In spite of a l l the claims being made for the  1 latest developments in this f i e l d , Hydrazid, or Eimifon or Marsalid, the most cautious observers believe that no drugs yet discovered, nor any collapse therapy 1. See articles "Tuberculosis Milestone", in Life magazine, March 3rd, 1952. p. 20.  23 has- substantially shortened the period of bed rest which i s s t i l l necessary to enable the body to complete the healing process. A high standard of nutrition i s universally recognized as one of the most potent weapons i n assisting the body to overcome the disease. Climate and altitude, once considered of paramount importance, are not now considered so i n modern treatment. 1  Bo one climate has been proved  superior i n the treatment of tuberculosis.  There i s considerable difference  of opinion as to the value of fresh-air treatment, as opposed to climate. This i s not utilized to any great degree on this continent but i s considered very 2 important i n Scandinavia and Britain, though not universally so. i  Because of the nature of modern treatment measures, i t i s advisable for a l l patients to have a period of sanitorium care.  The purpose of modern  sanatorium care i s not merely to Isolate an infectious person from the community, but to teach him how to apply the general principles for care of the disease to his own case, how to protect others, and most important of a l l , to enable him to have medical observation i n order to estimate his capacity to cope with hie disease and to evaluate which of the modern treatment procedures would be most 3 beneficial in his case. 1, It i s acknowledged however, that for the minority of patients who suffer from secondary catarrhal bronchitis, or post tuberculosis bronchiectasis with profuse sputum, a warm dry climate can spell the difference between invalidism and almost normal capacity to work. But they must live in a warm dry climate permanently i f they are to benefit by i t , 2, Rich, op. c i t , p. 6^5, thinks that fresh a i r treatment i s not so valueless as many would have us believe. Even the most healthy organism i s stimulated and invigorated by continuous living in the open a i r . It i s true that the most important effects may be on the psyche, but as Rich points out, that i s important, too, 3 , (Jhadwick and Pope, op, c i t , p. 121, estimate that 60 to 70$ of a l l patients are potential candidates for some form of collapse therapy. Out of the sample group of 79 patients, only 3 recovered on bed rest alone.  24 Serial X-rays taken periodically during the treatment process are used to assess changes i n the c l i n i c a l status of the disease.  Increase i n the  size of shadows indicates greater spread of the disease; decrease indicates healing.  But the X-ray does not show the degree of encapsulation of the lesions  or cavities.  Even calcified foci can contain viable b a c i l l i which are a  potential source of reactivation of the disease.  "Many an unexplained relapse"  says one doctor, " i s due to incomplete encapsulation which breaks down." Ibr this reason the patient's resumption of normal activity must be carefully graded. When the X-ray and other tests indicate that the disease i s quiescent, the patient i s taken off strict bed rest, and allowed "bathroom privileges". Then he i s allowed up for one meal, then for two meals, then for a l l meals. Hext, in addition, he i s allowed a fifteen minute exercise period once per day. This i s increased to thirty minutes, then to one hour, u n t i l the patient i s taking as much exercise as i s medically safe; always with the accompaniment of a mid-day rest.  Then he i s allowed part-time light work, then full-time light  work. The patient i s considered convalescent and his disease i s classified "quiescent" when he can undertake f u l l physical exertion without showing any signs of fatigue, maintain a steady and normal temperature, has no cavities, negative sputum, and his lesions are stationary according to X-ray. When the patient has maintained these gains for three months, during the last two of which he has been taking one hour's walking exercise daily or i t s equivalent, his disease i s classified as "apparently arrested". When he has maintained his gains for six months during the last two of which he has been taking two hour's exercise daily, his disease i s classified as "arrested". I f he can maintain these gains for a period of two years under ordinary conditions of l i f e , and i s proved on examination to have tuberculosis-negative sputum and  25  negative stomach washings, not only "by concentration and microscopic examination, hut also by culture or animal inoculation, his disease i s classified "apparently cured". Importance of the Cooperation of the patieat. Modern treatment methods i n tuberculosis of their very nature require the active participation of the patient i n the treatment plan. true of a l l illness, i t i s especially true of tuberculosis*  Though this i s  This fact was  recognized long before i t became the fashion for medical men to shed some of the secrecy surrounding treatment procedures and share more f u l l y with the patient information as to what was being done and why,  "Ho fool" said Osier  many years ago, "ever recovered from tuberculosis,,,. The fate of a person with tuberculosis depends much more on what he has in his head than on what he has i n his chest,"  Most modern tuberculosis control programs endeavor to give  the patient the opportunity to assume as much responsibility as possible i n the treatment plan for his individual case, Eecognition of the importance of the cooperation and participation of the patient involves much more than intellectual orientation and education of the patient to the facts regarding the disease.  It includes, or should include,  recognition of the personality of the patient as an important factor i n the management of the disease and even i n the prognosis.  Some medical men are of 2 the opinion that the personality of the patient i s the controlling factor.  1« These are the standards set according to the "Diagnostic Standards and Classification of Tuberculosis" published by the National Tuberculosis Association of U.S.A., New York, l$kO, p. 21 and 22, 2, See Coleman, Jules 7., Hurst Allan and Horbein, Buth, "Psychiatric Contributions to the Care of Tuberculosis Patients", Journal of the American Medical Association. Vol, 135» Eo, l l , p. 699*  —  2  6  Importance of the Psychosomatic Approach i n Diagnosis and  Treatment  The influence of the personality o f the patient as a factor i n i l l n e s s has long "been recognized "by c l i n i c i a n s , hut i t has "been given new  importance  "by the developments i n psychosomatic medicine which have taken place i n recent years,,  Psychosomatic medicine i s not a new s p e c i a l i t y i n medicine, "but an  approach to the whole o f medicine, which stresses the i n t e r - r e l a t i o n s h i p o f the psyche and the soma, that i s , the emotions and the "bodily symptoms, i n a l l sick people.  This approach to medicine i s not new i n i t s e l f •— indeed i t i s  an o l d as Hippocrates, "but i n recent years i t has "been given a s c i e n t i f i c v a l i d a t i o n "by the researches and demonstration work which have "been done i n this f i e l d . As a r e s u l t o f recent studies, i t has come to "be recognized that i n a l l i l l n e s s there are three components, f i r s t the physical or organic; secondly, the psychological or emotional; and t h i r d l y , the s o c i a l or environmental. A l l of these components and their i n t e r a c t i o n need to "be evaluated and taken into consideration, "both i n diagnosis and treatment This concept o f i l l n e s s stresses two important facts about people which have tended to "be overlooked i n the era o f s p e c i a l i z a t i o n i n medicine which has developed i n the past generation i n response to innumerable discoveries which have made i t impossible f o r one man to master medical science as a whole. These are f i r s t , the unity and i n d i v i s i b i l i t y of the human being, and secondly, the f a c t that i l l n e s s i s an aspect of behaviour.  As a r e s u l t o f these r e a l i z -  ations the tuberculosis patient has ceased to be regarded as p r i m a r i l y a "pair o f diseased lungs", but rather as an? individual who  i s part of a p a r t i c u l a r  family and a p a r t i c u l a r s o c i a l environment, and who has h i s c h a r a c t e r i s t i c i n d i v i d u a l i z e d way of reacting to i l l n e s s as to other experiences. In an i l l n e s s such as tuberculosis i t i s especially important to know  27 •the nature of the individual personality, "because the patient's emotional makeup, the nature of his conflicts, defence mechanisms, areas of satisfactions and frustrations, compensation patterns, and especially the degree of anxiety in his makeup and his a b i l i t y to adjust, w i l l largely determine how he copes with his part i n the management of his disease* Comprehensive medical care should provide for individualized handling of the patient's case,, "based on a f u l l understanding of the interaction of the organic disease process, the patient's personality pattern and the particular social environment of which": the patient i s a part*  The advantages  of modem medical science are made available to the patient through what has come to be called the Hreatment team", of which the patient's own physician i s the captain, and the hub around which rotate the services of the other members of the team; nurse, dietician, physiotherapist, laboratory technician, X-ray technician, occupational therapist, and medical social worker. The services of these specialists are enlisted by the patient's doctor according to the needs of the patient. The Bole o f the. Medical Social Worker i n the Treatment Team.. The medical social worker's role on the team developed i n response to the need to have a scientific approach to the psychological and social aspects of illness such as had already been developed towards the physical. The medical social worker i s professionally trained to assess the role which 1 emotional and social factors are playing in a patient's illness. She brings  1. It should be noted that the use of the feminine pronoun i n reference to the medical social worker i s merely for purposes of convenience, i n order to differentiate between the worker and the patient and also between the physician and the worker. It i s not meant to imply that medical social workers are exclusively feminine, nor that patients and their physicians are exclusively masculine*  28 her findings to the doctor f o r c o r r e l a t i o n with other diagnostic material, and works c l o s e l y with him i n the development o f a treatment p l a n f o r the solution or a l l e v i a t i o n , of whatever emotional and s o c i a l d i f f i c u l t i e s are a f f e c t i n g the patient's i l l n e s s .  The aim o f the, medical s o c i a l worker i s  to a s s i s t the patient to obtain maximum benefit from medical treatment by helping him overcome those personal and s o c i a l factors which have a bearing on h i s i l l n e s s and which are i n t e r f e r i n g with diagnosis, treatment or recovery.  She helps the patient mainly through casework which i s her c h i e f  professional t o o l . Social casework has been defined a s j "an a r t i n which knowledge o f the science o f human r e l a t i o n s and s k i l l i n r e l a t i o n s h i p are used to mobilize capacities i n the i n d i v i d u a l and resources i n the community, appropriate for better adjustment between the c l i e n t and a l l or any part of h i s t o t a l environment".^ Casework i s the prime a c t i v i t y o f the medical s o c i a l worker.  Through the  dynamic relationship which i s b u i l t up between worker and patient during interviews the patient comes to regard the worker as a f r i e n d l y understanding person who accepts him as he i s , who w i l l not censure him, who w i l l respect at a l l times h i s r i g h t to make h i s own decisions, with whom he can discuss f r e e l y and with f u l l protection of c o n f i d e n t i a l i t y , the problems which confront him, from whom he can draw enough support and encouragement to take a c t i o n to improve h i s s i t u a t i o n i n ways he could not do unaided.  The  patient can, through casework, gain insight into the r o l e which s o c i a l andemotional f a c t o r s are p l a y i n g i n h i s i l l n e s s , and can be helped to make the  1, Bowers, Swithin, Q.M.I., "The Hature and D e f i n i t i o n o f Social Casework: Part three," i n the Journal o f Social Casework. Yolume 30, Ho. 10. Dec. 19^9. p. 417  29 maximum e f f o r t of which he himself i s capable towards the solution or a l l e v i a t i o n of h i s d i f f i c u l t i e s .  He can also be helped to accept and u t i l i z e  help from a v a i l a b l e community resources. The s k i l l s and methods of the s o c i a l work profession are the same in  whatever f i e l d they are practiced, whether i n family welfare, c h i l d  welfare, recreation, corrections, or medical s o c i a l work. of  the f i e l d , however, which determines the worker's focus.  It i s the nature In a medical  setting, the s o c i a l worker focuses on personal and s o c i a l problems connected 1 with i l l n e s s .  She gives casework service at the request o f the doctor, studies  a p a t i e n t ' s problems as they appear to him, assesses the meaning they have for  him, studies h i s family background and s o c i a l circumstances i n order to  help the doctor discover the reasons behind the patient's behaviour i n i l l ness and h i s response or lack of response to medical treatment.  She helps  the patient to f e e l that i n spite of busy h o s p i t a l and c l i n i c routine, h i s i n d i v i d u a l needs are understood and are being taken into consideration i n treatment.  She assesses the r o l e the family i s playing i n the p a t i e n t ' s i l l -  ness, interprets to them the t o t a l s i t u a t i o n regarding the patient and t h e i r s p e c i f i c p a r t i n the treatment p l a n . it  She helps them to accept i t and carry  out. She helps other professional personnel caring f o r the patient to  understand him as an i n d i v i d u a l , and thus a s s i s t s i n the adjusting of the treatment plan to the patient's i n d i v i d u a l needs. in  She takes the i n i t i a t i v e  mobilizing community resources to meet the patient's needs and helps him  and h i s family to understand and accept these services.  1. I t i s preferable, but not essential, that a l l r e f e r r a l s f o r the s o c i a l worker's service should be made by the patient's doctor. Sometimes, however, i t i s the nurse, d i e t i c i a n , r e l a t i v e , friend, community agency, or even the patient himself who requests the worker's services. When t h i s happens the medical s o c i a l worker acquaints patient's doctor with the request and the reasons for i t . He makes the decision whether or not he wishes the worker to give service.  30 I f r e f e r r a l to other s o c i a l agencies i s made, she often undertakes i n association with them a job of cooperative casework f o r the benefit of the patient„  She interprets to other agencies the meaning of i l l n e s s  and h o s p i t a l experience to the patient, and the s o c i a l implications of the medical treatment plan, so that the agency concerned understands the t o t a l situation, and can help further the p l a n f o r the patient's medical care. The medical s o c i a l worker's job i s important and indispensable in illness.  Through her contribution the doctor i s enabled to understand  the patient as a person and so to i n d i v i d u a l i z e the treatment p l a n .  CHAPTER 2 The Sample Group The c i t y o f Vancouver, on the P a c i f i c Coast of Canada, has grown i n l i t t l e more than h a l f a century from the small lumber settlement of "Gastown" to  the t h i r d largest c i t y i n the country, with a population of approximately  350*000.  I t i s a t h r i v i n g seaport, the proud possessor of one of the world's  f i n e s t natural harbours, and occupies a strategic p o s i t i o n i n commerce between Occident and Orient.  The major industries o f the Province o f B r i t i s h  Columbia  i n which Vancouver i s situated, are lumbering, pulp and paper making, f i s h i n g , mining, smelting; and most recently,  oil.  Such rapid growth was almost inevitably accompanied by undesirable s o c i a l features which have l e f t t h e i r mark on the c i t y as i t exists today. S o c i a l Area Three i s a "blighted area" type of neighbourhood, unfortunately a common feature of many c i t i e s i n both the Old World and the Hew.  It i s a district  which o r i g i n a l l y possessed, and s t i l l retains many desirable features, and which was f i r s t s e t t l e d as a r e s i d e n t i a l section close to the c i t y centre i n the early days of the c i t y ' s h i s t o r y . In character.  the era of expansion which followed, the d i s t r i c t l o s t i t s o r i g i n a l  Today i t i s a confused mixture of dwellings, and i n d u s t r i a l structures  of many v a r i e t i e s . of  Many of the dwellings i n the area are the old-fashioned type  frame house, some s t i l l substantial and w e l l kept and housing a single family,  but f o r the most part run-down, dilapidated looking structures, now housing  Fig.  1  Map of Vancouver Snowing S o c i a l Areas  1  several families,  33 There i s also a number o f roughly constructed wooden dwel-  l i n g s o f incredible shapes and sizes which q u a l i f y as houses i n name only, and would be more appropriately designated as shacks.  There are also rows of cabins,  o r i g i n a l l y constructed for the coolie laborers on the r a i l r o a d s , and which were condemned many years ago, but are s t i l l inhabited.  There i s a high percentage  of rooming houses, a few o f which were o r i g i n a l l y b u i l t as such, but which are mostly inadequately converted structures o f various kinds with defective u t i l i t i e s i n which there i s considerable overcrowding.  Thus the area has become  one o f second hand housing, inhabited p r i n c i p a l l y by people whose income l e v e l does not permit them to rent or buy i n a more desirable neighbourhood. The area represents 2.8$ of the t o t a l area o f the c i t y , but about 10$ of i t s built-^up area.  (See Figure 1, page 32).  Most o f i t i s l a i d out on the  g r i d i r o n system, but there i s a considerable amount of haphazard development, a residue o f p o t e n t i a l l y u s e f u l land, and a conspicious lack of parks and open  2 spaces.  I t i s not, however, the area of greatest density, nor does i t contain  the worst slums, though i t faces on a water-front which i s one o f the most c o l o r f u l and exciting i n the world, and i s within two blocks o f the c i t y i n t e r s e c t i o n reputed to be the centre o f the drug exchange t r a f f i c i n the Canadian West. The area has a high percentage o f a r r e s t s f o r drunkenness and vagrancy, and a high accident rate. gravitate.  I t contains the part o f town to which transients n a t u r a l l y  In i t are to be found those establishments to which the underworld  1. Marsh, Leonard C. "Rebuilding a neighbourhood". Eeport on a Demons t r a t i o n Slum Clearance and Urban R e h a b i l i t a t i o n Project i n a Key Control Area i n Vancouver. U n i v e r s i t y of B r i t i s h Columbia, Vancouver, 1950, p. v i i In this Survey o f the Strathcona D i s t r i c t , covering about 43 blocks i n S o c i a l Area Three, Dr. Marsh estimates that single houses form three quarters of the dwellings, and that one i n four has sub-tenants or boarders.  2.  Ibid, p. 8. The Strathcona area's population i s between 7000 - 7500, and though there are hundreds o f single men, i t i s predominantly (62$) a family area.  34 operator can repair when i t i s expedient to rent a room without "being asked inconvenient questions. The area i s a racial melting pot, containing most of the city's Chinese population, and most of the foreign born of European extraction. It is the place where the immigrant can find a cultural or religious organization serving the people from his homeland, and where he can live t i l l he has learned the  language, assimilated the customs, and i s economically able to move to a  better d i s t r i c t .  Nevertheless, the d i s t r i c t has a high percentage of life-long 1  residents, and white people of Anglo-Saxon origin s t i l l predominate. The locality was chosen because i t was considered that the case studies of people living in such an area would well illustrate the problem of tuberculosis as i t exists today i n many cities of the western world.  It i s hoped  that the study w i l l highlight the ways i n which the disease i s s t i l l a challenging problem; a personal one for the patient and his family, a social one for  the community, and a professional one for the doctor, the public health  nurse and the social worker; and how i t i s inextricably interwoven with other social problems. The area was also chosen with reference to the fact that the writer participated i n the housing survey conducted i n the area in the summer of 1947 by Dr. Leonard Marsh of the University of British Columbia, i n which a concentrated examination was made of the Strathcona Area, a district of about forty blocks within Social Area Three, which i s illustrated on the accompanying map. (Figure 2, page 35) •  The writer thereby gained a first-hand knowledge of the  l i v i n g conditions of the people, and met and talked with many residents of the area, including some of the people whose case histories have been utilized i n 1. Marsh, op. c i t . p. 8 . In the Strathcona area 3 0 $ of the residents were of British or North American extraction, and practically a l l of the children Canadian born.  36 t h i s study. Selection o f Cases. A count was made of a l l the diagnosed cases l i v i n g i n the area i n the month o f August, 1948*  The choice o f this p a r t i c u l a r year was made "because o f  the housing survey o f the previous year, to give some perspective to the study, and to lessen the chance o f i d e n t i f i c a t i o n o f case h i s t o r i e s . The age group eighteen to f i f t y was chosen as representative of the l i f e - p e r i o d i n which the disease takes i t s greatest t o l l and presents the greatest  problem. 1  2  Chinese and Indian cases l i v i n g i n the area were excluded because i t i s generally acknowledged that these races have a lower resistance to tuberculosis, regardless o f the l e v e l o f t h e i r environmental hygiene, than have the white races.  There were also the added d i f f i c u l t i e s of language and culture  which prevented the obtaining o f adequate s o c i a l case h i s t o r y material f o r use i n t h i s survey. The actual cases were located by reference to the f i l e s o f the p u b l i c health nurses assigned to the area.  I t was found that the area's boundaries  d i d not coincide with those o f the d i s t r i c t s assigned to the nurses, but contained parts o f the t e r r i t o r i e s assigned to four o f them; so an address check was made to ascertain which o f the patients on t h e i r f i l e s were resident i n Social Area Three. The case l i s t thus compiled represents p r a c t i c a l l y one hundred per cent of the diagnosed cases of the white race l i v i n g i n the area.  This i s because  1. According to Marsh, op. c i t . p. 8, 28$ of the population of the Strathcona area are Chinese. 2. Twenty-five per cent of the Indians o f Canada l i v e i n . the Province o f B r i t i s h Columbia. The tuberculosis mortality rate among them i n 1948 was 480 per 1,000 as compared with 30 per 100,000 other Canadians.  37 a l l cases diagnosed through Tuberculosis Control are automatically referred to the d i s t r i c t p u b l i c health nurse f o r follow-tip.  A l l cases diagnosed by p r i v a t e  doctors must be reported to Tuberculosis Control, which i n turn n o t i f i e s the p u b l i c health nurse, who  then o f f e r s her services to the doctor concerned.  Even  i f the patient elects to attend a p r i v a t e doctor f o r treatment, most doctors u t i l i z e the services of the p u b l i c health nurse for follow up of the case from the public health aspect. For  p u b l i c health purposes, tuberculosis cases are divided into two  categories, primary and secondary.  A primary case i s one i n which the patient  has active tuberculosis, and i s , or should be, under regular medical and p u b l i c health supervision.  The p u b l i c health nurse v i s i t s these patients r e g u l a r l y .  A secondary case i s one i n which a patient's tuberculosis i s no longer a c t i v e , and h i s lesions have become s u f f i c i e n t l y s t a b i l i z e d for him to be allowed to undertake f u l l - t i m e l i g h t employment. by the p u b l i c health nurse.  This l a t t e r group i s not r e g u l a r l y v i s i t e d  These patients are contacted by her only i f they  f a i l to keep a checkup appointment at Tuberculosis Control. In the month o f August, 1948, there was a t o t a l of seventy-nine primary cases and sixty-two secondary cases, plus three u n c l a s s i f i e d cases, which came within the scope of this study as previously defined. A spot survey of t h i s nature ensured representation of a l l the d i f f e r e n t phases of the disease p r e h o s p l t a l l z a t i o n , h o s p i t a l i z a t i o n , convalescence and r e h a b i l i t a t i o n —  and the  problems associated with each. Research Method Identifying information regarding both primary and secondary cases was submitted to the Vancouver Social Service Exchange, which supplied a l i s t of  the r e g i s t r a t i o n s concerning the patients and t h e i r immediate families with  the various s o c i a l agencies of the c i t y .  The Metropolitan Health Committee  38 Table 1,  S o c i a l Service Exchange Registrations and t h e i r f a m i l i e s  Name of Agency  regarding patients  People l i v i n g People l i v i n g i n families alone P r i o r t< Since P r i o r to Since illness illness illness .llness  Total No.  P.O.  1. Metropolitan Health Committee  59  20  79  100  2. Taberculosis Control Social Service Dept.  55  20  75  95  3. City Social Service Department  27  3  18  65  82  1  25  31  14  23  8  11  5  8  9  12  2  3  8  11  4.  Children's A i d Societies  13  11  5. Family Welfare Bureau  12  2  6. Vancouver General Hospital Social Service Dept.  5  7» Child Guidance Clinic  3  8. Child Welfare Division  2  2  1  2  i 1  9» Family Court  5  1  1  2  10. John Howard Society  4  1  11. P r o v i n c i a l Mental Hospital  2  1-  3  5  3  3  5  12.  13o  Vancouver Preventorium V i c t o r i a n Order of Nurses Total Sources-  •  58  3 | 171  3  10  60  3 299  ,  5  Public Health Nurses f i l e s for a l l diagnosed white cases o f active tuberculosis l i v i n g i n s o c i a l area three of the City of Vancouver i n August, 1948, submitted to the Social Service Exchange for checking of s o c i a l agency r e g i s t r a t i o n s .  39 r e g i s t e r s a l l diagnosed cases of tuberculosis with the Exchange, and that agency's information regarding patients and their families had already been obtained from the f i l e s of the p u b l i c health nurses* I t was  found that seventy-five out of the seventy-nine primary cases  were registered with at least one other s o c i a l agency, i n a d d i t i o n to the Metropolitan Health Committee*  Ninety-five per cent of the cases i n the group  were registered with the Social Service D i v i s i o n of Tuberculosis Control*  The  remaining f i v e per cent were newly diagnosed, so that the f u l l impact of the disease had not yet h i t them and their f a m i l i e s .  A l l r e g i s t r a t i o n s with the  Tuberculosis Control S o c i a l Service Department, and with the City of Vancouver S o c i a l Service Department, the Children's Aid Society, the Catholic Children's Aid Society, and the Family Welfare Bureau were then followed up, and a l l the case h i s t o r i e s p e r t a i n i n g to the sample group were read.  This represented a  t o t a l of 187 case records out of a t o t a l of 220 r e g i s t r a t i o n s , excluding the r e g i s t r a t i o n s of the Metropolitan Health Committee, as i l l u s t r a t e d i n Table 1 (page 38). The information was and p u b l i c health nurses who  supplemented by discussions with the s o c i a l workers knew the patients and t h e i r f a m i l i e s .  Through the  assistance of the p u b l i c health nurses, v i s i t s were made to a sampling of patients and f a m i l i e s i n the group* Analysis of the secondary group of sixty-two cases revealed that twenty-five of them had been known to at least one other s o c i a l agency i n add i t i o n to Metropolitan Health during the course of t h e i r i l l n e s s .  Of the r e -  mainder, twenty-five proved to be cases whose X-rays showed evidence of a tubercular l e s i o n , and were therefore c a l l e d i n to report to Tuberculosis Control; but as within the r e l a t i v e l y short period of three to s i x months their l e s i o n s proved to be s t a b i l i z e d , they were allowed to resume their normal routine within t h i s period, though cautioned to observe moderation i n l i v i n g and working h a b i t s .  40 Most o f these people had never been aware that they had had a tubercular i n fection.  The r e s t o f the secondary group were twelve healed cases who were  neglecting to report f o r regular checkup. For purposes o f t h i s study, therefore, attention was focussed on the seventy-nine primary cases, regarding whom considerable s o c i a l data was a v a i l able, and whose case h i s t o r i e s i l l u s t r a t e the crux o f the tuberculosis problem. A l l the tables and charts i n the study have been computed on the basis o f these seventy-nine cases.  In most o f the tables, computations are made separately f o r  people i n family settings and people l i v i n g alone.  This i s because i t i s con-  sidered that the management o f the disease presents special problems to both the patient and the community when the tuberculous patient l i v e s alone. Age and Sex D i s t r i b u t i o n o f Cases The sex d i s t r i b u t i o n o f the group was 57$ male, (45 cases) and 43$ female (34 cases).  The d i s t r i b u t i o n o f cases according to age followed c l o s e l y  the current trend i n the tuberculosis morbidity rate f o r the population as a whole, with a concentration o f 61$ of the female cases i n the 18-25 age group, and 48$ o f the male cases i n the companying table. Table 2  37-50 age group, as i l l u s t r a t e d i n the a c -  (Table 2)  D i s t r i b u t i o n of tuberculosis cases i n the sample group according to age and sex Men Ho. •P.C.  No.  15  33  21  61  8  19  8  23  37-50 yrs.  22  48  5  16  Total  45  100  3k  100  Age Group  18-25 y r s . 26-36 y r s .  Women 1  P.C.  Family Context o f Cases The family status o f the patients as i l l u s t r a t e d i n TaHe 3 (page 4 l )  41 shows that every type of family context was represented i n the group* Hence the thesis material i s illustrative of the problem of tuberculosis as i t affects different family members  husband, wives, parents, single people living within  a family group, and people without any family attachments, living alone.  It i s  to be noted that 25$ of the total group were unattached people, living alone, and 90$ of these were men.  This group encounters special problems i n relation  to tuberculosis which w i l l be discussed later. Table 3.  Family Context of Patients i n the Sample Group  •family status  Number of cases  1. Married couples with children 2.  3.  4.  5.  (a) Husband tuberculous (b) Wife tuberculous Married couples without childrex (a) Husband tuberculous (b) Wife tuberculous Single people within a family (a) Men (b) Women. Tuberculous "families" i . e . more than one family member with active tuberculosis (a) Men (b). Women People living alone. (a; Men (b) Women Total  Table 4.  2. | '  36  9 19  12 25  6 7  7 9  4  5 3  2  16  8 15  8 4  10 5  18 2  22 3  79  100  25  100  Status of Families with Children No*  Family Status 1.  Total P.C.  P.C.  Normal families (Both parents i n the home) Broken families (One parent absent) Death Separation Divorce Unmarried mothers Total  P.C.  16  48  2 6 5 2  52  31  100  42 It i s s i g n i f i c a n t that over one t h i r d o f the t o t a l cases i n the group Of these 31 families with  occurred among married couples with children.  children, "barely h a l f were normal families i n the sense that both parents were present i n the home.  The other h a l f o f the group were broken families i n which  one parent was absent due to death, divorce, separation, o r some unusual m a r i t a l arrangement.  (See Table 4, page 41).  sixteen l i v i n g i n these f a m i l i e s .  There were 55 children under the age o f  Of the t o t a l sample group, 15$ l i v e d i n  families where more than one member had active tuberculosis.  This group l i k e  the group l i v i n g alone, encounters special d i f f i c u l t i e s i n the management o f t h e i r tuberculosis, which are discussed i n a l a t e r chapter. B a c i a l Origins of the Sample Group The r a c i a l o r i g i n s o f the group were extremely varied, as Table 5i (page 42) shows.  The largest single r a c i a l concentration was the Anglo-Saxon,  with the Slavonic group a close second; though there was a high subsidiary group o f Scandinavians and Finns among the males.  Yet twenty per cent o f the men and  twenty-five per cent o f the women were Canadian born, and there were no recent immigrants i n the group.  A l l had been i n Canada a t l e a s t eighteen years.  Table 5. B a c i a l Origins of the Sample Group  Bacial Origin  1. 2. 3«  Women No. P.C.  Men No. PoC.  Anglo-Saxon (English and German)  9  20  Celtic ( I r i s h , Scottish, Welsh)  4  9  Finnish  I  '  44  o  0  1 5  7  15  1  3  3  7  2  6  5  11  2  6  9  1  3  4.  French-Canadian  5.  Latin (French, I t a l i a n ,  6.  Scandinavian (Norwegian, Swedish, Danish)  4  7.  , Slav (Russian, P o l i s h , Ukrainian) Czech, Yugo-Slav  13  29  13  38  45  100  34  100  Spanish)  Total  43  Residence and M o b i l i t y It proved impossible to get s u f f i c i e n t information about residence to estimate group mobility, but from the information available, m o b i l i t y was not as high as might have been expected i n such a group.  At least s i x t y per cent of  the t o t a l group had been resident i n Vancouver for f i v e years or more. seemed to be a very small minority that were h i g h l y mobile.  There  Yet even those i n  seasonal employment tended to room a t the same address over a period of years, whenever they were i n town. address was  One o f the most frequent reasons for change of  the necessity of obtaining cheaper accommodation when on s o c i a l  assistance. Economic Status. The occupations of the people i n the sample group were on the whole i n the u n s k i l l e d and semi-skilled c l a s s i f i c a t i o n . page 44)  (See Table 6 and Table  7,  No l e s s than sixty-two per cent of the men were engaged i n heavy  manual work* an important factor i n r e h a b i l i t a t i o n planning f o r t h i s group. About h a l f of the women Were housewives, which i s also an important factor i n r e h a b i l i t a t i o n planning. On the whole, apart from the usual seasonal unemployment i n logging and a l l i e d industries, there was  l i t t l e chronic unemployment i n the group u n t i l  a f t e r the onset of tuberculosis. Only 20 out of 79  cases had been i n receipt  of s o c i a l assistance p r i o r to the diagnosis of tuberculosis. The agency records showed that the majority of those who  had received s o c i a l assistance p r i o r to  diagnosis had done so during depression years.  Only a small minority from the  group were registered as patients of the Vancouver General Hospital Outpatients' Department which indicates that most of the group either purchased medical care p r i v a t e l y or went without i t .  I t was  i n t e r e s t i n g to note that thirty-seven per  cent of the cases i n the group were registered with c h i l d welfare and family  44 Table 6.  Occupations e f Male Patients at Diagnosis Type o f employment  1.  2*  4. 5.  Ho.  62  Heavy Manual Work Logging. Labouring...... Mining......... fishing*. Cement mixing*. Longshoring....  14  5  4  3 1 1  S k i l l e d and Semi-skilled Carpentering.......... Truckdriving.......... Shipwright..... Seaman Marine engineer....... Painter.  1 1 1 1  Service Occupations Hospital orderly..1 Salesman. Barber. Kitchen help.......  1 1 1 1  University  2 2  18  4  Students...........  " U n o f f i c i a l occupations" Professional gambler....... Boo tlegger, Receiver of stolen goods..,  Total Table 7.  P.O.  7  1 1 1 45  100  Occupations of female Patients a t Diagnosis Type of employment Ho. 1.  2.  Semi-skilled occupations  Service occuoatioas  12  1 1 1 1 1 1 3 1 1  Unskilled occupations  l  Total  P.O.  3 17 1 34  21  9 55 3 100  45 welfare agencies "before the onset of tuberculosis, which i s an i n d i c a t i o n of the presence of s o c i a l problems within these f a m i l i e s severe enough to require outside help.  There were however only sixty Social Service Exchange r e g i s t r a t i o n s  regarding the t o t a l group p r i o r to tuberculosis, an average of l e s s than one r e g i s t r a t i o n per case, as against a t o t a l of 231  r e g i s t r a t i o n s following the  onset of tuberculosis, an average o f 2.9 r e g i s t r a t i o n s per case.  The conclusion  seems inescapable that problems connected with chronic i l l n e s s are one of the ' major reasons why people seek help from s o c i a l agencies. Other indications of the economic status of the group are to be found i n the fact that ten per cent owned t h e i r own homes.  I t i s true that some o f  the houses were of very i n f e r i o r quality, yet the aspirations of the home-owning group i n terms of good family l i v i n g and good c i t i z e n s h i p cannot be gainsaid. Moreover, twenty-six per cent of the group had either savings or insurance, while a larger majority indicated t h e i r appreciation of the value of t h r i f t habits, but had never been able, due to economic stresses, to plan any further ahead than t h e i r next pay-day. Housing The general housing conditions of the group have already been described.  The more s p e c i f i c d e f i c i e n c i e s of t h e i r l i v i n g accommodation as regards  the management of tuberculosis w i l l be discussed i n a l a t e r chapter. Extent of Tuberculosis a t Diagnosis The stage a t which tuberculosis i s diagnosed i s an important f a c t o r i n determining prognosis.  Cases are c l a s s i f i e d medically as minimal,  moderately  advanced, and far advanced, according to the extent of lung involvement.  Al-  though there i s an increasing tendency i n B r i t i s h Columbia f o r cases to be d i s covered i n the minimal stage, i n the,survey group forty-seven per cent were i n the moderately advanced stage at diagnosis, and twenty-three per cent i n the f a r  46 advanced stage, as Figure 3 (page 47) shows.  I f the people l i v i n g alone are con-  sidered as a separate group, one h a l f of this group was i n the f a r advanced stage at diagnosis. There was l i t t l e difference i n the proportion of men  and women i n  the minimal and moderately advanced groups, "but there was an overwhelming p r e ponderance of men  i n the f a r advanced group.  Length of ..Illness and Incapacitation. On average, as Figure 4^shows, tuberculosis incapacitated patients i n the survey group f o r a period of two to three years,  A minority were fortranate  enough to overcome t h e i r i n f e c t i o n and return to normal l i v i n g within a year. About twenty per cent o f the group were incapacitated for f i v e years or more* Though some of them attempted to return to normal l i v i n g t h e i r lesions "broke down and a reactiveation of the disease occurred,  "Estimation of length of i l l -  ness f o r purposes of t h i s survey has "been computed from length of time between diagnosis and c e r t i f i c a t i o n " F i t f o r f u l l - t i m e l i g h t work . w  This c e r t i f i c a t i o n  i s the maximum recommendation which the medical profession considers advisable for ex-tuberculous p a t i e n t s . Services f o r Tuberculous Patients i n B r i t i s h Columbia The B r i t i s h Columbia D i v i s i o n of Tuberculosis Control was  set up i n  1935 "by the P r o v i n c i a l Board o f Health i n order to c e n t r a l i z e the work of tuberculosis control throughout the Province, i s i n Vancouver,  The Central I n s t i t u t e of the D i v i s i o n  There are no p r i v a t e or municipal tuberculosis c l i n i c s i n  B r i t i s h Columbia, and a l l i n s t i t u t i o n s t r e a t i n g tuberculosis come under the control of the D i v i s i o n , This does not mean that the l o c a l health a u t h o r i t i e s are r e l i e v e d o f r e s p o n s i b i l i t y f o r tuberculosis c o n t r o l .  They undertake a great deal of survey  work and follow-up work under the guidance of the D i v i s i o n ,  The D i v i s i o n how»  47 f lgsa?e 3  Classification of extent of tubegeaiosis at Ala^not Samplegroup  (  ia  the  \ ~| People '. |& a. f am|%'  23$, ^ 5 5  . I-aniaal Active" '.. Figure 4  M6&®m%&'^ Advanced ;| :  alone !l • ' M M .. • If .Wemea Scale - 1mm. = 1 case  far ,Aataae,ed- Active  Length,of Illness,,la,^S8imole,/::<3^B^-. ,  ;  Hutaoer of  eases . 14  it 10 9 8  7 :'  6  ' 5' 4  .1 2 1-  6=12 ©OS.*. .  12-18 BIOS,  18=24 2-3 . mos>  3^  4-5  6*7  ^?Si.-  '#®»',  7*0  a.  8*$:  .^•Ojwa-.  48 ever, provides equipment, personnel and f a c i l i t i e s which would "be too c o s t l y for the municipalities to duplicate* Hospital  Services  1 The D i v i s i o n maintains three h o s p i t a l u n i t s . 232  The Vancouver u n i t has  "beds and a complete range of s p e c i a l i s t services f o r treatment of compli-  cations ensuing from tuberculosis.  It also has the largest outpatient depart-  The Tranquille unit has 356  ment i n the Province.  beds and a smaller out-  There i s also a u n i t of 75 beds i n V i c t o r i a .  patient department.  Beach u n i t i n Vancouver cares f o r chronic f i b r o i d s and some  The  Jericho  convalescents.  St. Joseph"s O r i e n t a l Hospital i s u t i l i z e d f o r the treatment of A s i a t i c and negro patients, though these patients are also admitted to other u n i t s , depending on the type of treatment required* These figures do not include the tuberculosis beds maintained by  the  Indian Department nor those of the Department of Veteran's A f f a i r s , "Shaughnessy Hospital" i n Vancouver. The Preventorium which has 40 beds, takes children between the ages of two and twelve who  have been infected with tuberculosis but not yet developed  the frank disease, i n order to b u i l d up t h e i r health and prevent the r i s k of further i n f e c t i o n .  I t i s j o i n t l y subsidized by the Province,  Vancouver and voluntary  the City of  organizations.  Adequacy of bed complement f o r the treatment of tuberculosis i s measured against the generally accepted standard:  "Bed  capacity should equal  1. These figures r e l a t e to bed capacity i n 1948. There has been no s i g n i f i c a n t addition since t h i s survey was undertaken u n t i l the opening of the Pearson Unit of 264 beds i n May 1952, in-Vancouver. Plans are under way to complete t h i s u n i t and to add further beds a t Tranquille, and by 1954 i t is hoped that the province w i l l have 1,000 beds f o r the treatment of tuberculosis. St. Joseph's Oriental Hospital i s now no longer used f o r tuberculous cases*  49 three times the annual number of deaths".  B r i t i s h Columbia's bed capacity a t  the time of t h i s survey d i d not quite reach t h i s standard. ' 1  C l i n i c Services Diagnostic services i n B r i t i s h Columbia are f r e e .  The D i v i s i o n main-  tains stationary diagnostic c l i n i c s i n Vancouver, V i c t o r i a , New  Westminster and  Kamloops, and stationary survey c l i n i c s a t Vancouver, V i c t o r i a and New Westminster.  There are also three mobile survey c l i n i c s and f i v e t r a v e l l i n g eon*  sultative c l i n i c s .  There are f o r t y centres i n B r i t i s h Columbia where the p a t i e n t  can get pneumo-thorax. by the D i v i s i o n .  Local doctors have been trained, and equipment provided  The Province has a good case-finding service as evidenced by  the high r a t i o of known cases to deaths.  There are over twenty registered cases  per death i n B r i t i s h Columbia, while elsewhere the general average i s f i v e known cases per death. S p e c i a l i s t Services The D i v i s i o n also maintains i n hospitals and c l i n i c s s p e c i a l i s t s such as d i e t i c i a n s , medical s o c i a l workers and v i s i t i n g p s y c h i a t r i s t s .  The Medical  Social Service D i v i s i o n gives service to a l l patients who are referred by t h e i r attending doctors, and also c a r r i e s the family case-work i f another agency i s not already active on the case.  social  In the l a t t e r event, the medical  s o c i a l worker actB as consultant to the family worker regarding the medical and s o c i a l aspects of the case, but do6s not d i r e c t l y v i s i t the family. P u b l i c Health Nursing Services The Province has a good public health nursing service which covers eighty per cent of the whole Province,  In the Greater Vancouver area these  services are provided through the Metropolitan Health Committee.  The p u b l i c  health nurse provides follow-up services from the p u b l i c h e a l t h point of view. 1. Tuberculosis Control s t a t i s t i c s for 1948 show that with 780 beds and 286 deaths i n the other-than-Indian population (the only figure obtainable) the r a t i o was approximately 2,8  50 l It i s her r e s p o n s i b i l i t y to arrange for the carrying out o f i s o l a t i o n and precaution techniques i n the patient's home; to i n s t r u c t the patient and h i s family regarding tuberculosis and general hygiene; to search for and arrange f o r the examination o f contacts; to trace i f possible the source o f the patient's infection; to provide regular supervision o f the family regarding the p u b l i c health aspects of the disease; to provide a report on a patient's home s i t u a t i o n when h o s p i t a l admission or discharge  i s recommended, or at any other time when  such a report would prove h e l p f u l ; to know and use a l l l o c a l community health and welfare agencies which can a s s i s t the patient and h i s family; and i n general to a c t as l i a i s o n between the patient, h i s physician, and the services o f tuberc u l o s i s control* Social Services In the Greater Vancouver area there i s a well-developed program of s o c i a l welfare services, both p u b l i c and p r i v a t e , a v a i l a b l e to the tuberculous patient and h i s family.  Of the public welfare programs the most important are  those provided by the City S o c i a l Service Department* It was recognized from surveys made by Tuberculosis Control that many patients were r e q u i r i n g re-admission to sanatoria with breakdowns i n which inadequate n u t r i t i o n and unsuitable housing had played a considerable p a r t . In May, l°Ak, c e r t a i n changes were made i n the s o c i a l assistance regulations extending to tuberculous patients c e r t a i n p r i v i l e g e s not given to other r e c i p i e n t s of s o c i a l assistance. requirements.  The most important change was i n e l i g i b i l i t y  E l i g i b i l i t y was to be based on diagnosis plus willingness to  1, Instruction i n the techniques o f bedside nursing are given i n the Greater Vancouver area by the V i c t o r i a n Order o f Burses, a p r i v a t e and voluntary organization which undertakes t h i s aspect o f p u b l i c health nursing*  51  1  accept medical care, and not on d e s t i t u t i o n . The standard s o c i a l allowance was  to he supplemented i n the following ways ~  f i r s t , "by a r e n t a l allowance  which was to "be calculated on the basis of the difference between the standard rent allowance paid to s o c i a l assistance r e c i p i e n t s and that currently being paid by the patient's family; secondly, a s p e c i a l dietary and comforts allowance of  $7*50 per  month f o r the patient i n addition to the usual food allow-  ance, with a s p e c i a l d i e t allowance o f $5.00 per month f o r any member o f the family l i v i n g a t home who i s infected with tuberculosis as shown by skin or X-ray tests, which allowance i s to be continued  for s i x months a f t e r l a s t close  contact with an infectious patient; t h i r d l y , the patient also to receive comforts allowance o f $3*00 per month while i n the sanitorium i f he i s i n receipt o f  2 s o c i a l assistance before admission, or i s without funds* As regards assets, single patients are allowed to have up to $250*00, and f a m i l i e s up to  $500.00  i n savings without a f f e c t i n g the allowance given©  I f the patient has l i q u i d assets i n excess o f t h i s amount, the allowance payable i s to be reduced by  3$  i n excess o f  $500.00,  or  $250*00,  as applicable.  Allow-  ance i s also made for instalments on essential f u r n i t u r e and any other neces-r sary payments such as premiums of l i f e insurance p o l i c i e s .  Certain allowances  for mortgages and taxes might also be met a t the d i s c r e t i o n o f the administrators.  A housekeeper might be provided i n c e r t a i n circumstances, but i f the  3 man i s earning $125 — $150 or more, no housekeeping service would be provided. 1. Ho s o c i a l assistance allowance i s granted to patients who sign themselves out o f s a n i t o r i a , and no tuberculosis extras are granted unless the patient reports r e g u l a r l y for checkup.  2. This has been raised to $5*00 since the time o f the survey. also been increases i n basic s o c i a l allowance r a t e s .  There have  3. These f i g u r e s r e l a t e to 1948, but there has been l i t t l e s i g n i f i c a n t increase i n t h i s estimate since that time. Ho exact maximum can be quoted a t present but i t i s true to say that housekeeping service i s not provided by the department unless the mother i s the patient and there are several c h i l d r e n i n the family, and other i n d i v i d u a l circumstances that seem to warrant i t .  52 Patients are also provided with free transportation to and from c l i n i c and h o s p i t a l , and a free supply o f paper handkerchiefs and sputum cups.  The services  of a n u t r i t i o n i s t and "budgeting help are also a v a i l a b l e to patients and their families.  The City S o c i a l Service Department also provides "boarding home care  for ambulant convalescent patients but these f a c i l i t i e s are l i m i t e d . The services o f the p r i v a t e s o c i a l agencies o f the community are a v a i l able to the tuberculous patient and h i s family on the same basis as to any other citizen.  Many o f the problems with which the family and c h i l d welfare agencies  are c a l l e d on to a s s i s t are r e l a t e d to the problem o f i l l n e s s within a family group. Rehabilitation Services "Rehabilitation services are a most important part o f the tuberculosis control program.  Studies made by the Tuberculosis Control D i v i s i o n indicated  that many patients between the ages o f 20 « 50, because o f lack of r e h a b i l i t a t i o n services, returned to their former employment which was i n many cases unsuitable and helped to cause a breakdown.  On the other hand many retrainable patients  were remaining on s o c i a l assistance as unemployable.  The Vancouver  Occupational  Industries was founded i n 1939 to provide r e t r a i n i n g o f tuberculous patients and other handicapped people.  Vancouver thus became the f i r s t c i t y i n Canada to have  a program for r e t r a i n i n g sanatorium patients. But the project was not successful i n a c t u a l i t y .  Due l i t some measure 1  to war economies, an attempt was made to put the sheltered workshops programs on a commercial basis, which i n i t s e l f made them therapeutically unsound.  Also*  the i n i t i a t i o n o f the assembly l i n e method, by which patients made only one p a r t of an a r t i c l e , soon resulted i n a loss o f i n t e r e s t on the part o f the p a t i e n t s . Many of them l e f t sheltered employment and turned to more remunerative work. The project was eventually abandoned.  53 There are a t present f a c i l i t i e s for psychological and aptitude t e s t s for patients, and some r e t r a i n i n g courses are available,. There i s also some marketing of a r t i c l e s produced i n occupational therapy, some assistance i n job placement by the Special Placement D i v i s i o n of the National Employment Service; but there i s no adequate r e t r a i n i n g and job placement program as suche  A great  deal of r e h a b i l i t a t i o n work i s currently being done by the B r i t i s h Columbia Tuberculosis Association. Voluntary Agencies i n Taberculosis Control The most important voluntary agency i n the f i e l d of tuberculosis cont r o l i s the B r i t i s h Columbia Taberculosis Society, the P r o v i n c i a l branch of the Canadian Taberculosis Society  0  I t was  founded i n 1904  to e n l i s t the services  of the ordinary c i t i z e n i n preventive work, and to cooperate i n the treatment of actual cases. Seal campaign.  Funds are r a i s e d p r i n c i p a l l y through the annual Christmas The Society employs a f u l l - t i m e worker to handle the educational  work of the d i v i s i o n which includes the p u b l i c a t i o n of an excellent series of pamphlets for patients, their f a m i l i e s and the general p u b l i c .  Movies and  l i b r a r y f a c i l i t i e s are also used i n the educational work of the Society. i s a f u l l - t i m e r e h a b i l i t a t i o n o f f i c e r who placement of p a t i e n t s .  There  a s s i s t s i n the r e t r a i n i n g and job  The Society has also f u l f i l l e d two other functions o f  a voluntary agency i n the tuberculosis f i e l d , namely, research and demonstration of new a c t i v i t i e s .  I t has sponsored the development o f survey work through the  mobile X-ray vans which i t bought and presented In 1949 of  to the Tuberculosis D i v i s i o n .  the Society b u i l t and equipped the Christmas Seal I n s t i t u t e at a cost  $500,000.  The I n s t i t u t e provided up-to-date equipment for the more compli-  cated s u r g i c a l procedures i n tuberculosis which had not previously been a v a i l able i n Canada. B r i t i s h Columbia Tuberculosis Control services compare favorably with  54 those i n the rest of Canada and i n many parts of the world, I t i s now proposed to examine how these services were u t i l i z e d "by the patients and f a m i l i e s i n the sample group.  CHAPTER 3  Problems of the Tuberculous Patient as an Individual  Tuberculosis i s a chronic r e a c t i v a t i n g disease requiring protracted treatment.  There i s no means of f o r e t e l l i n g how  patient's l e s i o n s to become s t a b i l i z e d .  long i t w i l l take f o r a  Because of t h i s , and i t s contagious-  ness, tuberculosis necessitates a more complete d i s l o c a t i o n of a patient's l i v i n g patterns than any other disease. ing  Even i f the patient succeeds i n a r r e s t -  the disease, he s t i l l has to l e a r n how  ations i t imposes.  to l i v e within the l i f e - l o n g l i m i t -  This u s u a l l y requires p a r t i a l or complete r e v i s i o n of h i s  l i v i n g and working habits. The cure i t s e l f c a l l s f o r the subjection of the patient to a regime s t r i c t e r and more all»embracing than that imposed by the sternest m i l i t a r y discipline.  This must be continued unremittingly for a much longer period of  time than i n most other i l l n e s s e s .  Even i f the patient follows the regime  f a i t h f u l l y , there i s no guarantee of cure — eventually i f he cooperates.  only the reasonable hope of recovery  There i s also no guarantee that recovery w i l l mean  that the patient can become completely self-supporting again. be a gloomy view of tuberculosis, but i t i s a factual one;  This may  seem to  and these implications  are sooner or l a t e r r e a l i z e d by most p a t i e n t s . The adjustments that the tuberculous patient must make are complex and leave no area of h i s l i f e untouched.  The personal, family, s o c i a l , economic  and vocational aspects of h i s l i f e are a l l involved.  What then, are the adjust-  ments which the patient must make i f he i s to accomplish the cure?  What are the  problems he must face and overcome both i n himself and i n h i s environment?  What  56 seems to be the f a c t o r s determining success or f a i l u r e ? Acceptance of the. Diagnosis It may  seem self-evident to state that the primary r e q u i s i t e f o r the  successful treatment of tuberculosis i s that the patient must accept the diagnosis and face h i s feelings about ito  Yet many patients hinder the successful  treatment of t h e i r disease f o r a considerable time, because they do not i n the f i r s t instance accept the diagnosis. a shock*  Even to those who  To most patients the diagnosis comes as  a n t i c i p a t e d the p o s s i b i l i t y there i s s t i l l , to  most people, some degree of shock i n having their fears v e r i f i e d , though to a few,  the knowledge comes as a release. As Table 8 (page 57)  did  shows, s i x t y - f i v e per cent of the sample group  not suspect that they had tuberculosis.  Many of the patients are of the  opinion that nothing they have to undergo l a t e r compares with the shock of the i n i t i a l blast of hearing t h e i r diagnosis.  I t has been noted by many observers  that, hypochondriacal and anxious individuals apart, patients who  are f a m i l i a r  with tuberculosis u s u a l l y adopt from the s t a r t a more courageous a t t i t u d e than those who .know l i t t l e about i t o "A person who knows what he i s up against and what he i s i n f o r i s at a d e f i n i t e advantage as compared with another who i s uncertain about h i s opponent s strength".^ 1  The responses o f patients on learning t h e i r diagnosis varied widely, from h y s t e r i c a l behavior, to apparent apathy.  The feelings which they ex-  pressed ran the gamut''from anger, despair, g u i l t , humiliation, shame, resentment, anxiety,^ doubt, i n c r e d i b i l i t y , helplessness, and depression,  to open b e l l i g e r -  ency. ".A^small minority rejected the diagnosis completely and maintained t h i s attitude. •  ,  t 1,  Wittkower, E.,  op. c i t . p.  21  57 Table 8,  How Cases i n the Sample Group Came to be Diagnosed  How Diagnosed  1.  Following a hemorrhage  2.  Consulted doctor because of i l l health  3.  Diagnosed by the survey c l i n i c (a) Mobile survey c l i n i c Industrial University General e.g.Department stores  People Living i n a Family  People Living Alone  5  Ho.  P.C.  2  7  10  16  5  21  25  38  13  51  65 ;  3 2  (b) Stationary survey c l i n i c 1. Referred f o r routine X-ray from y.G.H.-O.P.D, from City J a i l from Army Recruiting Centre  6  2  1 1 1  1  2. Contacts o f known cases reporting f o r checkup 3« Healed cases reporting f o r checkup 4. S e l f referred f o r checkup  1 9  3  5« Reason f o r r e f e r r a l not stated - apparently s e l f referred  9  7  6. Tuberculosis accidently discovered when X-rayed for logging i n j u r i e s  1 59  Total 1  20  79  100 !  58 Mrs„ Q» Was very angry when given the diagnosis. She ranted and raved a s to what she would do to the person who had i n f e c t e d her i f she could only get hold of him. She was r e f e r r i n g to her husband, an ex«patient, about whose i l l n e s s she had not known u n t i l a f t e r t h e i r c h i l d was born and he requested that the c h i l d he given the tuberculin skin t e s t . Patient was estranged from her husband and l i v i n g i n commonlaw union with another man. Her father t o l d her that her tuberculosis was a r e t r i b u t i o n for her way of l i f e . Patient denied she had a g u i l t y conscience about i t . l a t e r , when her case proved terminal she described her condition as "a judgment". Mr. .7. Said i f the guinea p i g test was p o s i t i v e i t was because the doctor had not scrubbed the germs from other patients o f f h i s hands before undertaking Mr. Y's test. Mr. J . Said he knew he had tuberculosis, but resented a l l ions that h i s disease was i n f e c t i o u s .  suggest-  Some patients, while outwardly accepting the diagnosis, seemed lm» pervious to the recommendation that they begin rest treatment r i g h t away, to prevent the spread of the disease.  This could, however, be due to the f a c t  that many patients when t o l d o f t h e i r diagnosis hear the dread word "tuberculosis", and s u f f e r a mental blackout.  They are unable to absorb anything that the doc-  tor says to them i n the way o f further explanation.  These people's f i r s t red-  actions develop more slowly over a l a t e r period o f time. Some p a t i e n t s t r y to erect a b a r r i e r against any i n t r u s i o n o f know« ledge about the nature of the disease. Mr. H. Did not wish to be t o l d anything else about tuberculosis,, and what he should do about i t . He thought people were better o f f not knowing. Mr. 0. Took two bottles of cod l i v e r o i l and f e l t so much better that he returned to h i s logging camp convinced that he had cured his. tuberculosis. Most patients expressed some feelings o f i n f e r i o r i t y , inadequacy, and  59 a r e a l fear o f rejection, by those most important  to them,  Pear of l o s s o f  love, respect and status as a consequence of contagiousness ponent i n the feelings of most p a t i e n t s .  was a strong com«=>  I t was not confined to those patients  with family attachments, Mr. S,' -was a 40-year o l d single man. He t o l d the p u b l i c health nurse, when she discussed with him the matter o f examina t i o n o f contacts, that he would carry out the necessary precautions himself, but he d i d not want the family with whom he was l i v i n g to know o f h i s disease. He was a f r a i d they would ask him to leave i f they knew. He very much valued the congenial l i v i n g he had enjoyed i n their home for many years. Even patients who show l i t t l e apparent concern about t h e i r disease need to be helped, as t h i s outward front i s often a defence against underlying anxiety and depression. Whatever a patient's i n i t i a l f e e l i n g s are regarding h i s i l l n e s s , he needs the release of bringing them out into the open.  Indeed this i s an  essential step i n treatment, because u n t i l he can do so he i s not ready to move on to proper o r i e n t a t i o n regarding the disease i t s e l f . patient can benefit from casework help.  I t i s here that the  This i s one reason why a l l patients  should be r e f e r r e d to the s o c i a l worker as soon as possible a f t e r diagnosis. At t h i s point, neither family nor friends can give the patient the release and support that a warm, accepting, p r o f e s s i o n a l r e l a t i o n s h i p can. I n i t i a l reactions to diagnosis are followed by the emergence of a patient's basic a t t i t u d e towards h i s i l l n e s s .  This i s , i n the main, conditioned  by h i s i n d i v i d u a l p e r s o n a l i t y and l i f e experience, and u s u a l l y corresponds to his previous pattern o f meeting l i f e ' s d i f f i c u l t  situations.  The medical s o c i a l worker here makes an important contribution to the treatment plan.  As soon as possible following diagnosis she poses and'  answers, as a r e s u l t o f her contact with the patient, the all-important questlonsj  60 What meaning does this i l l n e s s have for t h i s patient a t this p a r t i c u l a r time? Why  d i d he "become i l l when he did?  What i s the goal of h i s "behaviour? ill?  Why  did he "become i l l i n the manner he did?  What kind of person was he before he became  Does he view h i s i l l n e s s as a punishment?  punish somebody else?  Is he using h i s i l l n e s s to  Does he view h i s i l l n e s s as a welcome escape from r e s -  p o n s i b i l i t y , or an unbearable situation?  Does h i s i l l n e s s provide an  able and long-sought excuse to sink into dependency? because i t makes him the centre of attention?  accept-  Is he enjoying h i s i l l n e s s  Is he e x p l o i t i n g h i s i l l n e s s to  a neurotic pattern of l i v i n g so that i t becomes so much "stage property"? Hot u n t i l these questions have been s a t i s f a c t o r i l y answered can the treatment plan be geared to an i n d i v i d u a l patient's needs. I t i s also important to know the f a c t s about a patient's immediate s o c i a l s i t u a t i o n p r i o r to diagnosis, as the two following cases i l l u s t r a t e s Mr.  B, Was a young man of 25, "Following h i s admission to the sanatorium i t was noted that he was extremely quiet and d e l i b e r a t e l y shut himself o f f from the other patients and the s t a f f . The s o c i a l worker learned that the patient and h i s fiancee had just set t h e i r wedding date when the patient received h i s diagnosis. He refused to see h i s fiancee again, without giving her any reason f o r so doing, Sherlearned of h i s h o s p i t a l i z a t i o n , phoned repeatedly, l e f t messages, food and flowers. Yet i t was a considerable time before ,the patient answered any of these overtures.  Miss Z. Was a twenty year o l d s i n g l e g i r l who was i l l e g i t i m a t e l y pregnant when diagnosed f o r tuberculosis. She said l a t e r , "To be pregnant and to have tuberculosis too, was j u s t beyond me". Consequently, patient made a very poor adjustment to sanatorium l i v i n g . She told nobody, not even her doctor or her family, of her pregnancy u n t i l her condition was self-evident. Problems i n Orientation Orientation to tuberculosis i s always a highly i n d i v i d u a l matter. cannot be accomplished on a mass i n s t r u c t i o n b a s i s .  It  Even f a c t u a l information  regarding the disease is'absorbed at d i f f e r e n t rates by d i f f e r e n t p a t i e n t s .  61 Their f e e l i n g s about i t are s t i l l more varied.  I t i s a well-known fact that  people tend to hear and i n t e r p r e t information s e l e c t i v e l y , according to the pattern of t h e i r psychological defense mechanisms.  They unconsciously  reject  or misinterpret information which threatens or disturbs these patterns. From the p r a c t i c a l point of view, what a patient considers  important  about h i s i l l n e s s i s , i n the long run, more v i t a l than what the doctor knows to be  important. The two following cases i l l u s t r a t e t h i s fact© Mr,  Q. Was a:married man with c h i l d r e n . He r e s i s t e d a l l e f f o r t s to orientate him to h i s disease. He was s u r p r i s i n g l y ignorant of the most elementary f a c t s about tuberculosis, and maintained stubbornly that patients were better o f f "knowing nothing". One day i n the sanatorium he picked up a book which he read out of sheer boredom. What he read l e f t him so "scared and depressed ? that he had to do more reading to f i n d out i f the prognosis was so serious i n a l l cases. He began to read and absorb everything he could l a y his hands on regarding tuberculosis, and to carry out medical recommendations he had' previously ignored, 1  - •  Mr.  C. Was a single man i n h i s early f o r t i e s , a known neurotic with hypochondriacal tendencies. He was forbidden to smoke because i t caused him to cough excessively. He was r e s e n t f u l of the fact that other patients were allowed to smoke. He did not accept the doctor's explanation that i f smoking r e sulted i n coughing s p e l l s i n them as i t d i d with him, then the others would be forbidden to smoke a l s o , Mr. C. continued to smoke, and t o l d the doctor that he had read that smoking helps to cure tuberculosis, because "nicotine stops hemorrhaging", and "you should know that there i s a comparat i v e l y low death rate among tuberculosis smokers compared to non^-ismokers". To the s o c i a l worker the patient explained that he had to smoke, because "they." would not give him drugs©  Problems i n an i n d i v i d u a l patient's o r i e n t a t i o n depend l a r g e l y on h i s personality structure and the kind of emotional d i f f i c u l t y he experienced to diagnosis.  prior  The s o c i a l v/orker plays an indispensable r o l e i n helping the pat-  ient work through any emotional patterns which are i n t e r f e r i n g with h i s acceptance of i l l n e s s and treatment.  She gives him an opportunity to think i t through and  talk  62 i t out, thereby releasing h i s anxieties and misapprehensions. One area i n which the medical s o c i a l worker i s often c a l l e d to give help i s that of helping a patient deal with h i s fears.  "Fear" i t has been said,  "can be a bigger black spot than the mark on the patient's lungs, and must be  1 brought out into the open", i f the patient i s to respond successfully to t r e a t ment. Fear o f death i s a very r e a l one with many tuberculosis p a t i e n t s . of suffocation i s also common.  Fear  Fear o f confinement i n an i n s t i t u t i o n can prove  an insuperable obstacle to treatment.  Fear o f the unknown, and fear o f the  future can negative medical e f f o r t s on the patient's behalf. Acceptance of Sanatorium Care The acceptance of sanatorium care i s an adjustment which most patients are  c a l l e d upon to make.  Reactions to i t vary widely.  When a patient enters a  sanatorium he i n large measure gives up h i s r i g h t to self-determination.  He no  longer has the freedom of choice as to how he w i l l l i v e , what he w i l l eat, where he w i l l sleep, who w i l l share h i s waking and sleeping hours, or what a c t i v i t i e s he w i l l pursue.  He gives up a great deal, and expects the gains to be corres-  pondingly high.  I t i s only the importance o f h i s ultimate goal - recovery of  health - which as a rule, makes him tolerate such an unnatural existence. For t h i s reason, the modern sanatorium must o f f e r to the patient more than mere custodial care during the period of h i s infectiousness to others. The s o c i a l worker's role i n helping the patient accept sanatorium care i s an important one.  He needs i n d i v i d u a l i z e d help i n overcoming h i s reluctance  or even strong resistance to sanatorium l i f e .  He needs preparing f o r the kind  of l i f e into which he i s committing himself, 1, Dr. George Day, "Observations on the Psychology of the Tuberculous", The Lancet. Nov. 16th, 1946, p, 703.  63 The way that h o s p i t a l i z a t i o n i s presented to him i s important* I f he can he helped to accept i t p o s i t i v e l y as the "best preparation f o r h i s l i f e a f t e r recovery h i s adjustment to i t w i l l get o f f to a good s t a r t .  I t i s most  important that he should he convinced that the sanatorium has something to o f f e r him as an i n d i v i d u a l patient*  The patient and h i s family are p r i m a r i l y i n t e r -  ested i n what the sanatorium can do for him and are not u s u a l l y receptive to i n t e r p r e t a t i o n o f i t s necessity as a p u b l i c health measure. I t has been said that, "The greatest discovery anyone can make i n a sanatorium i s , that a substantial number of people conquer t h e i r disease and make that conquest permanent... This overcomes the fear, that despite a l l that can be done f o r him, his case w i l l end f a t a l l y * . and that no man need remain forever slave to h i s previous habits and environment... that with patient and d a i l y a p p l i c a t i o n , he can change h i s l i f e and h i s mind.*. The patient's motivation i n accepting sanatorium care also needs to be examined, as i t w i l l often give the key to how the p a t i e n t w i l l use h i s period of sanatorium care* Mrs.  K.  Thought her family was t r y i n g to get r i d o f her. Mrs. I. Did not think she could get better i n a sanatorium, but thought she owed i t to her family to go there* Mr. U. Was foreign born, and f o r him a tuberculosis h o s p i t a l had d i f f e r e n t c u l t u r a l connotations. He needed to be helped to understand that the sanatorium i s not a place where people are put away to d i e . When a patient refuses to enter a sanatorium h i s motivation for so doing should be examined?-  1. Hudson, Holland and Pish, Marjorie. Occupational Therapy i n the Treatment of the Tuberculous Patient. National Tuberculosis Association. The Livingstone Press, New York, 1944. p. 126.  6k Mrs. P. .A young married woman with far-advanced tuberculosis t o l d the s o c i a l worker that she could not enter the sanatorium because her husband d i d not wish her to. This proved to be correct, and concentrated e f f o r t s on the part of the doctor, p u b l i c health nurse and s o c i a l worker had to be exerted, before the patient's husband could be convinced o f the value of sanatorium care f o r the p a t i e n t . Miss 0, A young single woman, said she could not go to a sanatorium, as she would die o f loneliness. The s o c i a l worker learned that the patient had been abandoned by her own family and had l i v e d with a foster family to whom she was very much attached. She reacted with extreme anxiety to any attempts to separate her from them, even temporarily. Miss L. A twenty year o l d woman, refused a bed i n the sanatorium because her father and s i s t e r had both died i n the sanatorium, and to ask her to enter the same h o s p i t a l was tantamount to asking her to sign her own death sentence. Orientation to Sanatorium L i v i n g Having entered a sanatorium the patient needs help i n u t i l i z i n g i t s services constructively. justment.  The atmosphere can a s s i s t or hinder the patient's ad-  Poor administration, niggardly budgeting, and i n d i f f e r e n t s t a f f mem-  bers lead to low i n s t i t u t i o n a l morale, and i n t e n s i f y the inevitable periods o f boredom, f r u s t r a t i o n , i r r i t a b i l i t y and mild depression which a l l patients f e e l from time to time, A patient entering h o s p i t a l brings with him the omnibus o f h i s l i f e experience, to which he has reacted i n h i s i n d i v i d u a l i z e d way.  He brings with  him h i s feelings, motivations, prejudices, c o n f l i c t s , defence mechanisms, preferred modes of s a t i s f a c t i o n , and preferred modes o f r e a c t i o n to d i f f i c u l t i e s . A l l of which w i l l manifest themselves'in the communal atmosphere o f sanatorium life.  Even i f an i n s t i t u t i o n i s i d e a l l y operated, most patients need consider-  able help i n adjusting to t h i s t o t a l l y new way o f l i f e . The medical s o c i a l worker plays a v i t a l r o l e i n a s s i s t i n g the patient in t h i s area.  65 Acceptance o f De-pendency The hardest  thing f o r a sanatorium patient to do i s to r e s t .  It i s i  very d i f f i c u l t for any human being accustomed to the a c t i v i t y of d a i l y l i v i n g to l i e q u i e t l y i n bed twenty-four hours o f the day,  e s p e c i a l l y i f he f e e l s well,  as many early tuberculosis patients do. No one on the sanatorium s t a f f can make a patient r e s t .  They can only make i t easier for him to do so i f he w i l l .  In a d d i t i o n the bed patient must accept dependency on others, i n meeting  the personal needs which he has been accustomed to attending to h i m s e l f  0  The d i f f i c u l t y o f accepting the dependency r o l e i s often a t the root o f a patient's v i o l a t i o n o f rest orders, e s p e c i a l l y when rest means complete bed r e s t . Those patients who cannot be helped to accept dependency without undue g u i l t and anxiety never u t i l i s e their sanatorium treatment e f f e c t i v e l y , and sometimes the battle ends only with the death o f the p a t i e n t . Jack S. Was aged 21 when a diagnosis "moderately advanced a c t i v e tuberculosis" was made. He was the eldest son i n a family of Yugo-Slav extraction. His father deserted, leaving h i s mother with four small children. Jack was always concerned about h i s mother and wondering how she was managing while he was i n hospital. » He had the greatest d i f f i c u l t y i n adjusting to sanatorium l i f e . He discharged himself from the sanatorium on "personal business" grounds. About this time he married. Later he was given a p r i s o n sentence f o r r e t a i n i n g stolen goods. Because of h i s condition he was transferred to h o s p i t a l from j a i l . I n h o s p i t a l he boasted he had played baseball every day while i n j a i l for t h i r t y one months without any i l l e f f e c t s , that he was coughing l e s s , and had maintained h i s weight. He again signed hims e l f out when h i s wife deserted, leaving the younger of her two children on the doorstep of the Children's Aid Society. He then disappeared without trace, reappeared s i x months l a t e r , and went i n the shipyards u n t i l a mobile X-*ray survey showed he had a c t i v e tuberculosis. He became very h o s t i l e to the tuberculosis control a u t h o r i t i e s , saying i t was they who had caused'him to lose h i s job by reporting h i s condition to h i s employers. Later he had to be re-admitted to h o s p i t a l as an emergency. He was much more cooperative than formerly. When he learned that bed r e s t was the only thing, he requested to be sent to Tranquille so that he could rest without any d i s t r a c t i o n s . By t h i s time, however, l i t t l e could be done to a r r e s t the spread o f the disease. Several months l a t e r he died. He was 26 years o l d . e  66 Sanatorium l i f e i n e v i t a b l y reactivates a patient's c o n f l i c t s regarding  authority.  Some patients d i f f i c u l t i e s i n t h i s area manifested themselves  i n r e f u s a l to follow sanatorium r u l e s .  Such patients were i n constant d i f f i -  c u l t y i n their r e l a t i o n s h i p s with doctors, h o s p i t a l personnel and other p a t i e n t s . Mrs. ?. was a case i n point.  She made h e r s e l f very unpopular "by her  habit of swearing v i o l e n t l y i n the wards whether v i s i t o r s were present or not, and by constantly making disparaging remarks about other patients.  A consider-  able minority o f patients i n the group had similar d i f f i c u l t i e s , though not f o r the same reason. There were those patients whose basic h o s t i l i t y manifested i t s e l f i n poor precautionary technique, to the annoyance of both s t a f f and p a t i e n t s . Mr. T's a t t i t u d e was t y p i c a l .  He said i t was not altogether h i s f a u l t that he  got tuberculosis, so why should he be concerned about other people? There were those patients whose h o s t i l i t y found more subtle and i n d i r e c t outlets and were thereby a plague to the administrator and the s t a f f , and a source of discord among other patients, i n which they, the c u l p r i t s , were never d i r e c t l y involved.  Methods o f non-cooperation i n the sanatorium are multiple  and devious, and the sample group contributed their quota. Some patients made themselves very unpopular by being demanding o f service.  This i s due, usually, to some underlying anxiety, as i l l u s t r a t e d i n  the case of Mrs. B. Mrs. B. Became very h o s t i l e to sanatorium s t a f f when her constant demands f o r service were not met. She accused them of neglecting her because she was not English. When the s o c i a l worker talked with her, she learned that the patient's behaviour was related to the r e j e c t i o n she had experienced from her husband on account of her i l l n e s s . Some patients lack of cooperation was due to the f a c t that they had never r e a l l y accepted the diagnosis. Mr. Y. was a case i n point.  He admitted  67 that following h i s f i r s t discharge from h o s p i t a l , he l i v e d a " f a s t " l i f e "because he d i d not "believe he had tuberculosis,, When he had to be readmitted, however, he reconsidered h i s opinion and was much more cooperative.  Psychiatrically, .  this type of reaction i s said to occur i n r i g i d egocentric i n d i v i d u a l s accustomed  1 p r i v a t e l y to overvalue themselves and their opinions. The s o c i a l w o r k e r ' s help i n uncovering  the motivating anxieties which  a f f e c t a patient's outward .behaviour are a p r e r e q u i s i t e to helping the patient to resolve them and improve h i s adjustment to sanatorium l i v i n g . There,are some patients who  s e t t l e down to sanatorium l i f e  well, and o f f e r no problems to s t a f f or to other p a t i e n t s . these patients come at a l a t e r stage i n i l l n e s s .  exceedingly  The problems of,  When r e h a b i l i t a t i o n begins,  extraordinary d i f f i c u l t i e s are often encountered i n getting them from the horizontal to the perpendicular. The Problem o f Self--i3charge There comes a time i n most p a t i e n t s  1  l i v e s when r e a c t i o n to the length  2 of h o s p i t a l i z a t i o n reaches flood l e v e l and they consider self-discharge.  The  following are t y p i c a l remarks, (1)  I'm  (2) "I'm  t i r e d of a l l t h i s a.ow business, I'm going to t r y a quick cure . 11  getting t i r e d of being i n h o s p i t a l .  I think I ' l l p i c k up  better outside". (3) (4)  "They're not doing anything for me i n this h o s p i t a l , anyway".  "A tuberculous patient's l i f e i s n ' t worth a button, anyway. Why shouldn't I take a chance?'' 1, Hartz, Jerome. "Human Relationships i n Tuberculosis", Tuberculosis Control, Issue Bo. 56. Public Health Reports. U.S, Public Health Service. Vol. 65, October 6th, 1950. p. 1292 1305. 2, Wittkower, E. op. c i t . , p. 45, points out that i n h i s survey, of a t o t a l of 785 patients, comparison of various sanatoria showed that premature s e l f discharges are r e l a t e d to sanatorium morale; the incidence rate of premature self*_iseharges goes up when the sanatorium morale goes down and v i c e versa.  68 Sometimes impatience with sanatorium l i v i n g occurs because the patient f e e l s so much "better than he i s prepared to take a chance as f a r as complete recovery.is concerned.  This reaction occurs most frequently following the ab-  atement o f acute symptoms, when the lesions are stationary, but c e r t a i n l y not well-healed.  Yet the patient may experience a f e e l i n g of bodily well-being a t  t h i s time which convinces him he i s well on the road to recovery, and w i l l be better, o f f a t home. I t i s true that many patients control their disease a t l e a s t temporarily without any form of treatment being administered.  I t i s equally true that o f  a l l patients who are sputum p o s i t i v e a t diagnosis, a great many are dead w i t h i n  1 ten to f i f t e e n years regardless o f the form of treatment administered. Although there are no r e l i a b l e records o f the post-sanatorium h i s t o r i e s of the self-discharged as opposed to the medically discharged, i t i s known that there i s a marked c o r r e l a t i o n between length of treatment and s u r v i v a l  2 following treatment. When the patient i s going through t h i s c r i s i s , the services of the medical s o c i a l worker are often a determining factor i n helping the patient reach the point where he can decide to continue with sanatorium care.  In many hos-  p i t a l s the medical s o c i a l worker i s routinely asked to interview a l l p a t i e n t s who are considering s e l f discharge.  This i s not with the idea o f t a l k i n g them  into staying, but because i t i s hoped thereby to give the patient an opportunity to discuss h i s reasons f o r so d r a s t i c a step, and perhaps, with the s o c i a l worker's help, a r r i v i n g at other ways o f coping with h i s problems. As Table 9 (page 69) shows, twenty-four per cent o f cases i n the sample Myers, op. c i t . out p.o 395. group 1.signed themselves f h o s p i t a l , though fourteen per cent l a t e r returned 2.  Hudson, Holland,  op. c i t . p. 97.  69 Table 9  Acceptance and Non-acceptance of H o s p i t a l i z a t i o n by the Sample Group  Attitude to Hospitalization Accepted when f i r s t recommended  People l i v i n g alone  33  14  No.  P..C.  47  55  8  ll  I n i t i a l l y refused but l a t e r accepted  7  l  Discharged themselves but l a t e r returned  7  3  10  14  Discharged themselves and refused to return  7  0  7  10  P e r s i s t e n t l y refused hospitalization  3  2  5  7  Suitable f o r care at home Total  2  59  0 20  79  N.B.  to  People l i v i n g in families  2  3  100  - Of those accepting h o s p i t a l i z a t i o n , 3Q$ were readmitted once, 16$ were readmitted twice, and 4$ were readmitted three times.  complete sanatorium treatment.  with Figure 5, page 70,  This Table should be interpreted i n connection  showing length of h o s p i t a l i z a t i o n i n the sample group,  which averaged eighteen - twenty-four months,, The reasons patients gave f o r self-discharge are i l l u m i n a t i n g : of  Some  them seem t r i v i a l , but the medical s o c i a l worker must remember that minor  annoyances can be magnified into major ones i n the a r t i f i c i a l atmosphere of the sanatorium.  These the patient could take i n h i s s t r i d e i f he were w e l l .  reasons patients gave for self-discharge can be tabulated as follows{1. 2. 3. 4. 5. 6. 7.  Was going to d i e . Couldn't rest i n sanatorium. To avoid surgery. To s e t t l e m a r i t a l a f f a i r s . D i s l i k e of h o s p i t a l l i f e . Was moved from a one bed to a ten bed ward. Quarrel with room-mate.  The  70  n  g  a  r  e  5  Ee-gth of Hospitalization of the Sample ftwmp  Key  O  People living i n families People living alone  Sumter of cases 15 14 13 12 11 10 9 8 7 6 5 4 3 2 1  is/  1  <<>  .'.•vi  'ml'*  to  under 6-12 6 mos* mos.  12-18 mos.  #1  18*24 2-3 3-4 4-5 5-6 6-7 7-8 lot mos. yrs. yrs. yrs. yrs* yrs. yrs, known 1  71 8. 9. 10. 11. 12. 13•  A f r a i d room-mates might f i n d out she had venereal disease* Personal business - unstated. Deaf mute patient, who was lonely. Psychopathic personality. To prevent stepson making a p r i o r claim on dying husband's estate. No reason given,  14. No reason given. The reasons given "by patients f o r self-discharge are not always the r e a l ones, though some patients themselves are not always aware o f t h i s .  Mr. L's  case i s one i n point. Mr. L. Was a f o r t y year o l d married man. He discharged himself when he discovered that h i s wife was l i v i n g with another man. He divorced her and t r i e d to get custody of t h e i r five-year old adopted son who had been placed i n a foster home. The s o c i a l worker noted that the strongest element i n Mr. L's concern for the c h i l d seemed to be that he wanted to use the c h i l d as a weapon against h i s wife. Mr. L's r e a l reason for self-discharge was thought to be h i s d i s l i k e of h o s p i t a l l i f e and fear o f a c t i v e treatment, because he refused to return to h o s p i t a l a f t e r he had s e t t l e d h i s personal a f f a i r s . Facing Surgery Another major problem which the tuberculosis patient may have to face i s the prospect  of submitting to some form o f surgical procedure, p o s s i b l y even  major surgery.  Very few patients recover on bed rest alone, and i f the various  forms of pneumo thorax are considered as s u r g i c a l procedures, i t would be true to say that most patients have to face a t l e a s t "the n e e d l e S u r g e r y i s a c r i s i s s i t u a t i o n , yet the patient's usual method of meeting c r i s e s w i l l not s u f f i c e here.  In almost' any other c r i s i s there i s something that a person can  a c t i v e l y do.  In surgery there must be a letting-go o f the w i l l ; a complete sur-  render of one's l i f e into the hands of another.  This can activate subconscious  fears of death, suffocation or mutilation, o f which the patient may not be aware, or may be unable to face unaided. The opinion of a p s y c h i a t r i c team i s that 5"To understand and help the patient master these fears often requires d e t a i l e d understanding o f the psycho-dynamics o f personality. We have observed that recovery i s f a c i l i t a t e d when patients get psychological help i n preparation for  72 surgical treatment. The psychological trauma produced by recommendation f o r an operation produces tension states which are a d d i t i o n a l hazards to the surgical team. Adequate v e n t i l a t i o n o f the ideas and feelings associated with the tension w i l l tend to reduce i t , while neglect to do so often r e s u l t s i n prolonged excessive pain and an extended period of invalidism".^ Even pneumo-thorax can arouse great anxiety. One woman patient i n the group was "so scared and i l l " i n i t i a l pneumo-thorax that she refused to have r e f i l l s .  following her  Needle phobia i s by  no means uncommon e s p e c i a l l y among women p a t i e n t s . Sometimes r e f u s a l o f surgery i s based on misapprehension as well as fear, as the case o f Mr. P. i l l u s t r a t e s . Mr. P. Was thirty-nine years old, married, i n t e l l i g e n t and an accomplished musician. He had far advanced tuberculosis at diagnosis and thoracoplasty was recommended. He could not face t h i s and discharged himself from h o s p i t a l . H i s condition retrogressed and he considered re-admission p r i n c i p a l l y f o r the sake o f h i s family. He discussed h i s apprehensions with the s o c i a l worker, and i t appeared that he was convinced that i f he re-entered h o s p i t a l he would "wake ;up one morning to f i n d a hole i n my side or a r i b gone". Although the h o s p i t a l a u t h o r i t i e s promised that no surgery would be performed without a patient's consent, Mr. P. d i d not consider that t h i s was r e a l l y h o s p i t a l p r a c t i c e because "they compelled you to sign a statement on admission saying you would submit to anything they thought advisable. So you r e a l l y have no choice about what i s done to you". Mr. P. expressed a fear o f being maimed f o r l i f e or o f dying while i n h o s p i t a l . Whatever the reason f o r a patient's r e f u s a l o f surgery, the medical s o c i a l worker may be able to help him to " t a l k i t through" and reach a point where from h i s own convietion, he can carry through the doctor's recommendation.  1. Coleman, Jules V., Hurst A l l a n , and Horbein, Euth. "Psychiatric Cont r i b u t i o n s to the Care of Tuberculous Patients", Journal of American Medical Association. V o l . 135. No. 11, p. 699  73 Wittkower, i n h i s survey of a t o t a l of 785 patients i n many sanatoria, found that, while r e f u s a l of surgery may  he due to many factors, i t i s most  commonly, l i k e premature self-discharge, r e l a t e d to low morale i n the ward or sanatorium*,  The impression he obtained was  that doctors often f a i l to give  patients s u f f i c i e n t information regarding the'nature and purpose of the and to d i s p e l t h e i r f e a r s .  operation,  Their own f a m i l i a r i t y with the various s u r g i c a l pro1  cedures lead them to presume that the patient knows more than he a c t u a l l y does. Hence the patient's main source of information i s often other patients,  who  usually have a fund of knowledge, not a l l of which i s correct, hut which i s imparted g r a t i s to prospective candidates for surgery* Economic Problems An i l l n e s s such as tuberculosis u s u a l l y demands major adjustments i n a family's economy.  No matter how  capably or w i l l i n g l y made, these e n t a i l  eventually economic hardship and deprivation because of the c h r o n i c i t y of the disease.  This can put an a d d i t i o n a l s t r a i n on family l i v i n g to the point of  break-up.  I t has been observed, even i n f a m i l i e s where there has been i n s u f -  f i c i e n t income over a long period, as well as d i f f i c u l t y i n the management of i t , that chronic i l l n e s s places a d d i t i o n a l burdens on the family's adjustment. Increased  economic hardship  i s often the factor which t i l t s the balance i n an  already precarious family equilibrium. The patient's reaction to the loss of h i s own earning power i s often a great problem i n i t s e l f .  Where the patient i s the head of the family h i s l o s s  of economic independence a f f e c t s other l i v e s as well as h i s own, a d d i t i o n a l source of worry and anxiety to  and this i s an  him.  Many patients have r e a l c o n f l i c t s over the l o s s , o f t h e i r economic . status, f e a r i n g i t may 1.  Wittkower, E.,  lead to l o s s of a l l status within the family. op. c i t . p.  47.  The feel«  74 ing of "being a "burden on one's family i s a problem with which many patients wrestle long and hard "before they come to peace within themselves,,  There were  many examples i n the group of patients resenting their wives going out to work to support the family and of patients r e l u c t a n t l y accepting p a r t i a l or complete support from adolescent  or married c h i l d r e n .  Anxiety regarding economic a f f a i r s has a two«*fold r e s u l t i n tuberculosis.  "First i t prevents the patient from achieving the r e s t that i s the  stone of the treatment. how  corner  I t i s impossible for most patients not to worry about  their f a m i l i e s w i l l manage when they are no longer able to provide f o r them.  I f a patient f e e l s that h i s family i s s u f f e r i n g deprivation as a r e s u l t of h i s i n a b i l i t y to provide for them during h i s i l l n e s s , he i n f a c t shares t h e i r p r i v a t i o n , though he may  de-  outwardly be comfortably ensconsed i n a well equipped  sanatorium, complete with a l l modern conveniences and three square meals a  day.  I f he f e e l s that h i s family, i n accepting s o c i a l assistance i s being reduced to subsistence l e v e l , this i n i t s e l f may be a continuous source of resentment and inner c o n f l i c t . His anxieties may  mount so high that he discharges himself from h o s p i t a l  or returns to employment before he i s medically f i t .  There were, several examples  of the l a t t e r reaction among the males i n the group. The second e f f e c t of economic i n s e c u r i t y and deprivation i n a family i s that i t i n t e n s i f i e s any emotional problems which existed before onset o f ness, or which have a r i s e n because of i t .  ill-  S o c i a l and emotional needs are so  i n t e r - r e l a t e d that they are i n e x t r i c a b l y interwoven i n d a i l y l i v i n g . One  of the greatest d i f f i c u l t i e s a patient may  encounter during h i s  i l l n e s s i s facing the necessity of having to accept s o c i a l assistance for himself and family.  I t i s an anomaly of our s o c i a l system that we equate p r o d u c t i v i t y  with economic productivity, so that a person who  becomes economically  inadequate  75 loses not only h i s own s e l f - s u f f i c i e n c y "but also the respect o f society, and often, along with i t , h i s own s e l f respect. i l l n e s s i s an acceptable  While i t i s true that t h e o r e t i c a l l y ,  form o f dependency i n our culture, the receipt of  s o c i a l assistance c a r r i e s with i t i n p r a c t i c e a s o c i a l stigma and a t a c i t i m p l i cation that there i s some inherent defect i n a person who i s unable to provide for himself and h i s family.  This a t t i t u d e can be a great blow to the p a t i e n t  and h i s family. Of the sample group f o r t y - f i v e cases accepted s o c i a l assistance, t h i r t y at diagnosis and f i f t e e n during convalescence.  The accompanying table shows  the economic status o f those who d i d not accept s o c i a l assistance.  It i s signi-  f i c a n t that about h a l f o f the non-acceptors were married women patients who were supported by their husbands.  In almost a l l cases when the patients were bread-  winners or single persons they had to accept s o c i a l assistance. Table 10.  1. 2.  5.  Economic Status o f Patients who did not accept Social Assistance  Married women supported by husbands  16  Single people who preferred to accept help from r e l a t i v e s .  6  Refused s o c i a l assistance, though e l i g i b l e and no other v i s i b l e means o f support,„  2  Accepted diagnosis, but continued working.......  4  Refused to accept diagnosis and continued working..  4  6. Newly diagnosed, l i v i n g on  2  savings. Total  34  The mixed feelings of many patients are well i l l u s t r a t e d by the case o f Mr.  T),,  76 Mr.".-. A single man, an orderly i n a tuberculosis h o s p i t a l , had Just returned from a t r i p to h i s home country when he learned of h i s diagnosis. He t o l d the s o c i a l worker that h i s f r i e n d s would take care of him u n t i l h i s admission to h o s p i t a l and they d i d not wish him to apply for assistance, A few weeks l a t e r , he applied f o r s o c i a l assistance. Complaints of the inadequacy of s o c i a l assistance i n terms of d a i l y economic management v/ere almost u n i v e r s a l v  i n the group.  Mr. E's case i l l u s t -  rates the general group f e e l i n g . ..Mr.. E.. Was very i l l on" admission and required thoracoplasty from which he made one of the quickest comebacks the medical s t a f f had ever witnessed. He considered r e h a b i l i t a t i o n r e a l i s t i c a l l y . He d i d not think he would need s o c i a l assistance except for a short while a f t e r he l e f t h o s p i t a l . He expressed r e a l fear about h i s a b i l i t y to l i v e on s o c i a l assistance. He said that patients were having breakdowns and r e q u i r i n g readmissions because they could not manage on s o c i a l assistance. He wondered i f the same thing would happen to him. He thought t h i s was poor economy on the p a r t of the Government. He resented having to report a l l h i s proceeds from h i s occupational therapy products*; He thought t h i s destroyed a man's i n i t i a t i v e . In spite of these f e e l ings he remained f r i e n d l y to the s o c i a l assistance worker and to the occupational therapist. A small minority refused to accept i n need.  s o c i a l assistance though obviously  This r e f u s a l to "accept c h a r i t y " was  not confined to the older people.  Some young people preferred to borrow from r e l a t i v e s or be supported by t h e i r families. Problem of Separation from "Family, and Changed Family "Relationships Long separation from h i s family, both p h y s i c a l and p s y c h i c a l , i s one of the hardest problems the patient has to face.  His diagnosis brings this home  to him f o r c i b l y when he i s t o l d that he must not k i s s or caress h i s wife  and  children, and with t h i s p a i n f u l edict goes the l u r k i n g fear of the e f f e c t that long separation w i l l have on h i s family r e l a t i o n s h i p s , e s p e c i a l l y m a r i t a l and parent-child r e l a t i o n s h i p s .  77 The following cases show some,aspects,of the problem. .  .  .  -  \  Mrs. A. Was a twenty-five year o l d married woman. She was concerned about her husband not w r i t i n g r e g u l a r l y . : She thought he was probably interested i n other women. He had always been attracted to the opposite sex. But she wasn't going to worry l i k e another patient who had died when her husband started divorce proceedings. Then relenting, she f e l t sorry f o r him, too because he would "go w i l d i f he didn't have female company", and she had been i n h o s p i t a l f o r three years. But she intended to speak to him severely when he came a t Christmas. Her underlying fear was that he might go home to Russia and leave her with the c h i l d . But the house was i n her name, and was the only security she had. Mrs. Q, Complained that her husband was very jealous. A male patient had lent her a radio and her husband accused her o f i n f i d e l i t y because o f t h i s . She complained she gets l i t t l e change apart from the radio, f o r when her husband v i s i t s her he just s i t s s i l e n t . When she t e l l s him l i f e i s not very s a t i s f a c t o r y to her, either, he laughs and says a l l she has to do i s sign on the dotted l i n e . Mrs. X. Was twenty-six years old, married, with two children i n a foster home. She f e l t she was neither needed nor missed at home. Her family ignored her, her husband comes once or twice a week, "depending on h i s mood". Her father, didn't l i k e h o s p i t a l s and wouldn't v i s i t . Brother just writes. She got no food or flowers l i k e other patients d i d . Problem o f Substitute Care f o r Children This i s usually a very acute problem where the mother i s the patient and there i s no suitable or a v a i l a b l e person to a c t as mother substitute.  The  income l e v e l o f these families u s u a l l y precluded a b i l i t y to pay f o r f u l l - t i m e or even part-time housekeeper service.  There i s no community agency providing  homemaker care on a free basis or on a s l i d i n g scale according to family income for  i n d e f i n i t e periods.  The Family Welfare Homemaker Service cannot undertake to 1 provide the service i n d e f i n i t e l y i n cases o f chronic i l l n e s s . 1. Since the survey was made the Federal Government provided a f i s c a l grant i n 19^9 for a p i l o t project o f t h i s nature. The Metropolitan Health Committee administered the grant and the Family Welfare Bureau supervized the placement of twenty-five Homemakers i n homes where the mother was a tuberculosis p a t i e n t . This service was highly successful and much appreciated by the families concerned. However, i t was discontinued i n 1952 when the Federal grant ceased. The P r o v i n c i a l and l o c a l a u t h o r i t i e s , i n spite o f much campaigning by the Health and Welfare agencies, d i d not undertake f i n a n c i a l r e s p o n s i b i l i t y f o r i t s continuance.  78 Consequently, placement of young children outside their families had' to "be considered "by a number of families i n the group. were cared f o r "by r e l a t i v e s .  In ten cases c h i l d r e n  Also a number of husbands were w i l l i n g to under-  take extra r e s p o n s i b i l i t y to enable school-age children to remain i n the home when the mother was i n h o s p i t a l or convalescent. the Preventorium.  Three children were placed i n  F i f t e e n others were placed i n foster homes, either  through  Children's Aid Society or i n p r i v a t e foster homes found by their r e l a t i v e s . Some families refused to consider placements even when no other plan was  feasible.  Placement planning f o r children always a c t i v a t e s mixed feelings i n the parents, as the two following cases show, Mrs.  Mr.  K. Was a twenty-three year o l d married woman who had minimal a c t i v e tuberculosis and was on bed rest at home. Placement of the c h i l d was not a new experience f o r her as she had once previously boarded him out so she could go out working. She consented to h i s placement i n a foster home a f t e r she became i l l . Becoming pregnant again, she expected the c l i n i c doctors would recommend an abortion. When they d i d not, she said that i f she was well enough to go through with a pregnancy she was well enough to look a f t e r her other c h i l d , whom she removed from the foster home. Then she looked a f t e r both children unaided except by her husband.  y. Was a twenty-three year o l d married man, very immature emotiona l l y , and regarded his baby son as a r i v a l f o r h i s wife's a f f e c t i o n s . When he learned h i s diagnosis they were l i v i n g i n one small room. As the patient was sputum p o s i t i v e i t was recommended that he take a h o t e l room pending admission. He wanted h i s wife to place the c h i l d and come to Tranquille to be near him. He phoned h i s wife r e g u l a r l y from T r a n q u i l l e u n t i l the doctor cut down the c a l l s ; so he sent wires. The wife, equally immature, was indecisive about continuing the marriage, as he had never supported her. Both seemed to look upon the boy as a burden. She asked Children's A i d Society to place the c h i l d while she sorted out her a f f a i r s .  Problems Created by lack of Family Cooperation Lack of family cooperation can create manifold problems f o r the patient i n the management of tuberculosis. trates t h i s .  Though an extreme case, Mrs. M's well i l l u s -  79 Mrs. M«, Was a twenty-three year o l d married woman who was readmitted following a breakdown a t t r i b u t e d to excessive exercise and worry over marital a f f a i r s . Said she had to exceed her exercise because husband objected to her staying i n bed and his having to look af£er her. He had also begun to drink and got i n with a bad crowd. He made love to h i s g i r l f r i e n d i n front o f h i s wife, but "didn't know why, as he respected his w i f e " Doctor, p u b l i c health nurse and 'social worker f a i l e d to help him understand tuberculosis, but the l a t t e r , learned that h i s mother had been a chronic i n v a l i d . He resented having had to do many menial household tasks as a boy. 0  Following a r e c o n c i l i a t i o n the husband's behaviour persisted, which g r e a t l y depressed patient. Her doctor stated that she needed "to want to get w e l l " . Her condition improved enough so that she could be discharged. This time, however, she went to r e l a t i v e s . Problems i n Preparing to Leave the Sanatorium Environment It i s a paradox that though most patients have great d i f f i c u l t y i n adjusting to sanatorium l i f e i n the beginning, they almost a l l have some r e l u c t ance towards leaving. ings.  A patient being " b u i l t up for discharge" has mixed f e e l -  He i s glad to be through the period of bed r e s t , but he has some qualms  about h i s a b i l i t y to resume h i s l i f e outside the sanatorium. the acceptance he w i l l get from h i s family.  He wonders about  He knows, too, that one purpose o f  the "building up" phase i s to evaluate how well h i s lesions w i l l stand up under increased a c t i v i t y , and he may therefore fear a r e a c t i v a t i o n o f h i s disease. To quote from the p s y c h i a t r i c team again:"Various suspicious and r e b e l l i o u s tendencies may appear at t h i s time and patients may accuse the i n s t i t u t i o n of rushing them i n order to give t h e i r beds to incoming patients.i.... It i s a t t h i s time that somatic complaints often assume a dramatic q u a l i t y . . , . . The somatic complaints should be treated as well as the underlying fears, and not c o l d l y dismissed as psychological."  1. .'Coleman, J u l e s V., et a l . op, c i t . p, 699»  80 Problems i n the Rehabilitative Phase of the I l l n e s s There must be a complete change i n the patient's psychologic a t t i t u d e i f he i s to adapt himself successfully to the next phase of i l l n e s s — r e h a b i l i t a t i v e phase.  U n t i l t h i s time i t has been demanded of him that he  assume a r o l e of complete dependency. independence again.  the  Though he may  Now  i t i s demanded that he assume h i s  ardently desire to do so, i t i s not without  d i f f i c u l t y that he shakes o f f the comforting protection that sanatorium l i f e o f f e r s him. ing  One young g i r l , following discharge,  said she would not mind break-  down again, as she missed a l l the g i r l s so much. It i s not surprising, perhaps, that the most common d i f f i c u l t y i n t h i s  period of i l l n e s s i s reluctance to take the recommended increase i n a c t i v i t y . Persistent and unresolved  d i f f i c u l t y i n this area i s often a sign of gross  maladjustment i n some area o f the patient's l i f e .  The medical s o c i a l worker can  often be very h e l p f u l to the doctor i n helping both him and the patient focus on what are the factors i n a p a r t i c u l a r patient's p e r s o n a l i t y which make the l i f e of an i n v a l i d preferable to the s a t i s f a c t i o n s of normal l i v i n g , or what i t i s i n h i s l i f e s i t u a t i o n that he cannot face returning to. -.Once t h i s i s discovered,  the medical s o c i a l worker can also help i n  evaluating the capacity of the patient to work through h i s d i f f i c u l t i e s , or the degree to which he can be helped to develop the capacity to cope successfully with such obstacles, whether i n himself or i n h i s environment. who  A small minority  from a medical point of. view are extremely d i f f i c u l t to treat, are those  patients for whonc tuberculosis seems to serve the purpose of gradual s u i c i d e . Their wish to die i s sometimes unconscious, sometimes consciously, stated.  What-  ever i s done from the treatment point of view, they get worse instead of better. As one doctor puts i t , "A malign fate seems at work". There are also those people who  might be described as the  "passive"  81 personality type; the ones who have given up trying i n every area of l i f e and sink "back into an acceptance of chronic invalidism.which defies a l l attempts to help them r e - e s t a b l i s h a more constructive pattern.  There seems to be no point  at which the doctor or s o c i a l worker can get a foothold. Some patients are a p t l y described as: "increasingly disturbed patients who manage to achieve some precarious kind of equilibrium with severe pulmonary disease but remain c h r o n i c a l l y i l l f o r years. They r a r e l y become ambulatory, and i f they do, are soon back i n bed f o r years a f t e r an immediate and severe relapse. As p e r s o n a l i t y types these patients tend to be introverted, withdrawn people who use their severe tuberculosis to guarantee care and a f f e c t i o n for themselves. They seem to pay scant a t t e n t i o n to t h e i r disease, yet manage to be the most discussed therapeutic problems i n the sanatorium over long periods of time. They would probably be frank schizophrenics i f t h e i r emotional needs were not somehow being precariously met by the care and sympathy they always manage to get f o r themselves I n the sanatorium",  1  A l l these types of reaction were represented i n the sample group  0  Most p a t i e n t s , however, given adequate i n d i v i d u a l i z e d help, can come through this phase and move on to the p r a c t i c a l aspects of discharge planning. At this point the help of the medical s o c i a l worker and the family case worker can be invaluable. Convalescence Convalescence  i s considered the most important phase of tuberculosis,  because during i t the patient makes the t r a n s i t i o n to normal l i v i n g .  I t i s the  phase during which most breakdowns occur, usually within s i x months of leaving the sanatorium.  Physical aspects of l i v i n g conditions are important and must  not put undue s t r a i n on the p a t i e n t .  1. Hartz, Jerome, "Human Eolations i n Tuberculosis", Tuberculosis Control Issue Ho. 56 of P u b l i c Health Reports, U.S.A. Federal Security Agency. Vol. 65, October 6th, 1950. p. 1303.  82 The emotional environment to which a patient returns i s also important. The family need help i n readjusting the l i v i n g patterns they have developed i n the patient's absence*  They must also understand that he i s not a, completely  well person,, -The patient's f e e l i n g s about returning home are u s u a l l y mixed.  He i s  on a r i g i d rest schedule which he must follow i f he i s to maintain the gains he has made i n the sanatorium.  I t i s very d i f f i c u l t for one person i n a family to  adhere to a schedule when nobody else i n the house i s bound by i t ^ e s p e c i a l l y i f there i s no privacy.  Many patients i n the sample group d i d not have a room  of t h e i r own where,they could take their day-time r e s t .  I t should also be  remembered t h a t : n  ...while i t i s true that self-centered and introspective i n d i v i d u a l s are u s u a l l y unduly concerned about t h e i r health, i t i s equally true that chronic sickness tends to make a person self-centred and introspective.  The two following cases indicate the problems vrhich can occur following  discharge.. Miss J . Was a twenty year old single g i r l who returned to her family. Her mother, a confirmed neurotic, indulged Miss J . who exceeded her exercise, and complained that she could not rest i n the small apartment which her mother, s i s t e r and brother shared. She and her mother were being supported by the brother, whom patient f e l t resented her presence and her illness.  j  1.  Miss S. Was a twenty-two year o l d single g i r l , one o f a family o f f i v e c h i l d r e n . The parents had separated many years before, and the patient was l i v i n g with her mother and s i b l i n g s vrho contributed to the family income. She had her own room, n i c e l y decorated, with a new bed-room suite bought e s p e c i a l l y for her. She spent considerable time a t leather work and k n i t t i n g . .She assured the p u b l i c health nurse that she was carrying out c l i n i c i n s t r u c t i o n s f a i t h f u l l y . Her mother, however, said that the patient was hard to handle. She  Wittkower,  op. c i t . p. 22  83 swore a t her mother and sometimes refused to speak for two or three days. She c r i t i c i z e d her mother f o r keeping a male hoarder whose payments helped the family income, hut the mother d i d not l i k e to ask him to leave because of patient's a t t i t u d e . Mother suspected.daughter o f v i s i t i n g her father down town, and patient was t a l k i n g of going to l i v e elsewhere. Mother thought she would he better boarding with g i r l s her own age. Also said daughter was often out l a t e . Patient had a boy f r i e n d and became engaged but her lesions broke down and she was readmitted to h o s p i t a l , A p a t i e n t who  i s not well enough to manage on h i s own,  c i t y boarding home care also has problems i n adjustment.  and accepts  During the past ten  years at least f i v e or s i x tuberculosis boarding homes have been opened and u t i l i z e d by City Social Service Department f o r tuberculous convalescents.  The  operators of a l l except one requested to be r e l i e v e d of t h e i r boarders within six months to two years.  This was not p r i m a r i l y because of fear of i n f e c t i o n  but because of p r a c t i c a l d i f f i c u l t i e s i n d a i l y management and d i s c i p l i n e .  The  one boarding home which has been i n existence f i f t e e n years, owes i t s success l a r g e l y to the p e r s o n a l i t y of the landlady who has the knack of handling tuberculous convalescents. The patient who  i s discharged to a room of h i s own must be c a r e f u l to  s t r i k e the balance between too much and too l i t t l e exercise.  The problems of  t h i s group are discussed further i n Chapter Five, as these patients are a s p e c i a l community problem. Some of the p a t i e n t s i n the group had "flareups" i n their condition following discharge.  For purposes of this study, "flareup" i s defined as a  r e a c t i v a t i o n of the disease i n patients who had become well enough to leave hospi t a l but had not yet been c e r t i f i e d f i t f o r f u l l time l i g h t work,  Flareups  occurred i n eighteen per cent of the t o t a l sample group, i n the r a t i o of ten men  to four women, most commonly within the f i r s t  s i x months following discharge.  Only two of the flareups followed s e l f discharge from h o s p i t a l , though their occurrence might have been anticipated i n a l l but three of the fourteen cases.  84  ,  "because the patients were grossly exceeding their exercise orders. It i s i n t e r e s t i n g to note that while flareup was much more common i n patients l i v i n g i n family settings, "breakdown, that i s recurrence of disease i n those who  had "been c e r t i f i e d well enough to undertake f u l l time l i g h t work,  was much more common i n the group l i v i n g , alone,  Flareup was  often r e l a t e d to a  too active s o c i a l l i f e on discharge, while "breakdown was most commonly r e l a t e d to return to unsuitable employment', Rehabilitation I t i s d i f f i c u l t to estimate the precise point at which the r e h a b i l i t a t i o n of a patient begins.  In a sense, r e h a b i l i t a t i o n begins with diagnosis.  Actually, treatment and r e h a b i l i t a t i o n proceed together.  In the r e s t r i c t e d sense,  r e h a b i l i t a t i o n begins when the patient has reached that point i n h i s i l l n e s s where he can begin to take an active part i n the plan to restore him to community l i v i n g as self-supporting as p o s s i b l e .  The standard d e f i n i t i o n of r e h a b i l i t -  a t i o n i s that drawn up at the Hational Conference on R e h a b i l i t a t i o n at Washington, U, S. A, i n  1942:  "Rehabilitation i n tuberculosis i s the r e s t o r a t i o n of tuberculous persons to the f u l l e s t p h y s i c a l , mental, s o c i a l , vocational, and economic usefulness of which they are capable". It i s often possible to commence vocational r e - t r a i n i n g while the p a t i e n t i s i n the sanatorium.  As a preliminary or concurrent  of occupational therapy i s u s u a l l y recommended. many-sided.  c u l t i v a t e new  i n t e r e s t s which can l a t e r be turned into a  source of income, and i t can help provide t r a i n i n g f o r a more suitable  type of work. ing,  I t s function i n a sanatorium i s  It helps to maintain the morale of patients, i t helps them to occupy  time u s e f u l l y , i t may part-time  measure, some form  Occupational  therapy i s , however, an adjunct to vocational t r a i n -  not a substitute for i t .  A good deal of occupational therapy i s c r a f t  therapy which does not appeal to those patients who  may  not have the i n t e r e s t or  85 s k i l l to produce work of marketable standard. Vocational r e - t r a i n i n g may should never "be l i m i t e d to these.  involve academic educational courses, "but  I t i s often possible f o r a patient to com-  p l e t e the required high school grades while i n h o s p i t a L  Hot t i l l l a t e r can he  undertake technical, i n d u s t r i a l re-training© In addition, the patient's work capacity needs to be evaluated and h i s work tolerance tested.  medically  He also needs the opportunity to develop confide  cnce i n himself and h i s c a p a b i l i t i e s .  These conditions are usually found i n  sheltered workshops and i n very l i g h t  occupations.  A minority of patients i n the sample group wished to return to their former jobs which were medically suitable. divided into two large groups* - f i r s t ,  The majority, however, could be  those who  because of their medical  condition w i l l never be more than p a r t i a l l y self-supporting.  This group requires  specialized r e t r a i n i n g , plus s e l e c t i v e placement i n sheltered workshops of some kind.  The second group are those whose prognosis i s good, and who  p l e t e l y selfrsupporting but who  can be com-  are unable to return to their former work be-  cause of i t s u n s u i t a b i l i t y . Casework service to patients i n the f i r s t group i s directed towards helping them make a constructive adjustment to their d i s a b i l i t i e s .  The second  group often need help i n accepting the change-over to sedentary employment.  It  i s not to be presumed that most patients w i l l welcome the idea of sedentary work merely because they  r e a l i z e i t i s i n their best i n t e r e s t s . Many patients  have l i v e d a l i f e of action and who  who  suffer from what has been c a l l e d " c u l t u r a l  poverty", have neither the capacity nor the i n c l i n a t i o n f o r sedentary work, as the following cases show  0  .Mr.  A. A young man i n h i s early twenties, had been a logger before his i l l n e s s . He returned the sheet the Rehabilitation  86 o f f i c e r gave him completely blank. He said there was nothing i n i t for him. He was ruined anyway. He wasn't going to do anything for the r e s t of h i s l i f e , he would rather have no job than a l i g h t job. I t was no use planning for a future that f o r him wasn't there. It was a toss-up whether he would return to the woods and have a good time and then return to the h o s p i t a l to d i e . The woods held more appeal than any l i g h t job, even though the l i g h t job helped him to l i v e to be 100 years o l d . Mrs.  1. Did not want any r e h a b i l i t a t i o n course. A l l her previous plans had had to be cancelled so i t was better to l i v e from day to day. She understood she should not return to her former employment, but she would wait and see -•something would perhaps turn up.  The patient's emotional readiness to undertake any s p e c i f i c form of r e h a b i l i t a t i o n t r a i n i n g i s the r e q u i s i t e without which no plan can succeed. The role of the medical s o c i a l worker i n evaluating the patient's weaknesses and strengths i n terms of a b i l i t y to use r e t r a i n i n g f a c i l i t i e s and helping him work through h i s feelings regarding the whole area of r e h a b i l i t a t i o n i s a professional job demanding the highest i n casework s k i l l s . Rehabilitation i s not completed t i l l the p a t i e n t i s restored to the community again as f u l l y self-supporting as p o s s i b l e . of a job-^placement program.  This implies the  Because such f a c i l i t i e s do not e x i s t i n s u f f i c i e n t  measure i n Vancouver, the tendency i n the sample group was turn to their former jobs.  existence  for patients to r e -  As these usually involved the things which are  occupational hazards f o r the ex-tuberculous*- heavy manual labor, i r r e g u l a r hours, night work and exposure to extremes of temperature, i t i s not surprising that the percentage of breakdowns i n the group was high, as Figure 6 (page 8?) shows. For purposes o f t h i s study, a "breakdown" i s defined as a  recurrence  df a c t i v e disease i n those whose lesions had become s u f f i c i e n t l y well healed previously, to allow them to undertake f u l l time l i g h t work, on medical recommendation. Breakdown occurred i n eighteen per cent of the t o t a l sample.  But i f  87 the sample group of those l i v i n g alone i s considered separately f o r t y - f i v e per cent of the people l i v i n g alone suffered a "breakdown, as compared with a corresponding figure of ten per cent for those l i v i n g i n a family setting,, In f i v e cases out of the t o t a l breakdown group, a breakdown was unexpected, as the patients' lesions were apparently well healed, and they were f o l lowing a moderate regime.  The remainder  (over h a l f of the group) were following  a mode of l i f e unsuitable to an ex-tuberculous patient, u s u a l l y because of unsuitable employment. Patients need to remember that having had the disease imposes some l i m i t a t i o n s on them which they must observe f o r the r e s t of their l i v e s .  Though  a patient may recover h i s health, he s t i l l retains the b a c i l l u s within h i s t i s sues.  No matter how well-healed lesions may appear to be this does not exclude  the p o s s i b i l i t y that the b a c i l l i  he c a r r i e s within him may be s t i r r e d into  a c t i v i t y again by anything which lowers, h i s powers of resistance. for  Therefore,  the rest of h i s l i f e , he should observe moderation i n l i v i n g habits.  I f he  does, the chances are that he w i l l maintain h i s health and conserve the gains made at such a cost to himself, h i s family and the community. 31GUBE -6  Incidence of Breakdown i n the Sample Group KEY j  >ple l i v i n g i n j People a family People l i v i n g alone  Number of cases  M W  !  - Men - women  w M  Breakdown within  1-6  mos.  6-12 1 - 2 mos. yrs.  3-4 yrs.  5-6 yrs.  7-8 yrs.  8- 9 yrs.  9-10 yrs.  following resumption of l i g h t work  CHAPTER 4.  The Family and  Tuberculosis  Tuberculosis i s an i l l n e s s whose impact a f f e c t s a patient's e n t i r e family*  Their understanding and cooperation are e s s e n t i a l i n the successful  management of the disease,  l i k e the patient, h i s family must be w i l l i n g to ac-  cept major readjustments i n l i v i n g patterns as a r e s u l t of the disease. Changes i n family r o l e s are inevitable, whether the patient be father, mother or single adult, husband or wife.  the  The family must be prepared to  accept constructively the consequences which the long absence and i n c a p a c i t a t i o n of a family member e n t a i l s .  Some family members may have to assume the absent  patient's r o l e as parent or breadwinner.  They must accept a reduction i n l i v i n g  standards with the r e s u l t i n g readjustments.  At the same time they must maintain  high standards of n u t r i t i o n , for their own and the patient's sake.  They must be  prepared to accept their part i n the treatment plan and take r e s p o n s i b i l i t y for the d a i l y management of the patient's i l l n e s s while he i s home,  Family problems  e x i s t i n g p r i o r to the i l l n e s s are usually i n t e n s i f i e d , while others may a r e s u l t of i t .  a r i s e as  A l l these are important ingredients i n the emotional atmosphere  surrounding the patient, and their presence or lack may play a great part i n determining the nature of the adjustment he makes to h i s i l l n e s s , h i s eventual degree of recovery and the success of h i s r e h a b i l i t a t o r y e f f o r t s .  Without family  support the patient finds fate's blow even harder to take. The s i t u a t i o n of the patient with no family presents, ipso facto, even greater d i f f i c u l t i e s , . Family attitudes varied as much as d i d those of the i n d i v i d u a l patients.  89 ..Mrs. V. Received the p u b l i c health nurse p o l i t e l y but r e s i s t e d a l l suggestions that her son had tuberculosis. Mrs. C. Was cooperative regarding X-rays f o r h e r s e l f and family, but d i d not want her roomers, who shared the household f a c i l i t i e s , to know o f her son's diagnosis. Mr. M. Mr. .M. thought h i s daughter would die from the disease anyway and "would just as soon see her go now as l i v e l i k e an i n v a l i d for the rest o f her l i f e " . In some families there was a r e a l fear of i n f e c t i o n which fear the patient was made to f e e l . unconcern.  In others there was a f a t a l i s t i c a t t i t u d e ; or complete  Sometimes a family refused X-ray checkup, or would ignore precaution-  ary techniques.  The following case i l l u s t r a t e s t h i s a t t i t u d e . Mr. P. Was a married man with three children. He drove a c i t y garbage truck. His wife who had severe tuberculosis, discharged h e r s e l f from the sanatorium following the f i r s t stage o f thoracoplasty and refused to return for the completion o f the surgery. She was sputum p o s i t i v e , and t o l d the p u b l i c health nurse she d i d not p r a c t i c e precautionary measures as she thought i t a l o t o f "tommy r o t " . When the p u b l i c health nurse discussed checkup examinations with Mr. P., he stated he was not worried about i n f e c t i o n o f the children or himself. " I f you are going to get i t , you can get i t by walking down town" he said. "With a l l the precautions they took i n hospitals a l o t o f nurses got i t " . There was as much tuberculosis walking round Vancouver as there was i n h i s own home. Besides, "one that's got i t i s one that you don't need to be a f r a i d of". He didn't believe i n "taking d i r t y s t u f f from a cow and putting i t into a c h i l d ' s body". He thinks h i s wife would be dead now i f she had stayed i n h o s p i t a l , and a f t e r a l l , she doesn't need to worry about the housework. Undoubtedly, Mr. P. took excellent care o f the children. He prepared their school lunches and put them i n the f r i g i daire f o r next day; was a good cook, handy with a needle, bought a washing machine and worked i t , and t r i e d to get a suitable woman to do the heavy work.  Problems of Dally Management when a Patient i s Home A l l p a t i e n t s , whether they accept sanatorium care or not, are home f o r considerable periods of t h e i r i l l n e s s , including the two most c r u c i a l ones from  90 the patient's standpoint — n a m e l y , when he i s awaiting admission to the sanatorium and when he i s convalescent* . Family attitudes at these times are s p e c i a l l y important* The p e r i o d when a patient i s awaiting .admission i s an extremely d i f * f i c u l t one for "both him and h i s family* preted to mean immediate bed r e s t .  The recommendation "Admit" i s i n t e r -  I f the patient i s sputum p o s i t i v e , the task  of looking a f t e r him i s doubly d i f f i c u l t *  In order that the patient be given  the required care, the home must be turned into a rainature h o s p i t a l .  The B r i t i s h  Columbia "Handbook on Tuberculosis" states t h a t j 1. P a t i e n t must have a room to himself i f at a l l possible* 2* A l l excess and stuffed furniture to be removed* 3* Patient's l i n e n and towels to be kept separate and d i s i n f e c t e d with l y s o l solution or soaked i n b o i l i n g soapy water before p u t t i n g with family wash (ambulatory patients to use their own towels always)* 4. Dishes and c u t l e r y to be b o i l e d i f p o s s i b l e a f t e r each use or washed i n b o i l i n g soapy water, and rinsed i n clear hot water. I f this i s conscientiously c a r r i e d out, there i s no need to keep the dishes separate. 5* Blankets, comforters, pillows should be frequently hung i n moving a i r , outside i n the sun i f possible* 6* Outer clothing, s u i t s , dresses and topcoats are to be protected by c a r e f u l conscientious use o f the paper handkerchief* . Any spotting which does occur i s to be c a r e f u l l y cleansed with soap and water and the clothing hung i n moving a i r . A l l outer clothing should be hung i n the fresh a i r frequently* Pressing with steam whenever possible i s also e f f e c t i v e . 7* Damp dusting to be done d a i l y * 8* Home to be thoroughly and frequently a i r e d * 9* A s c e p t i c techniques i n the home should follow as c l o s e l y as p o s s i b l e that followed i n i n s t i t u t i o n s . 1  2  The d i f f i c u l t y of carrying out the necessary precautionary techniques i s greatly i n t e n s i f i e d by the extremely unsatisfactory housing conditions In which many of the families i n the group l i v e d . housekeeping  Apart from those l i v i n g alone i n  or sleeping rooms, there were twenty eight patients l i v i n g i n houses,  1. H a t f i e l d , 2. H a t f i e l d ,  op. c i t . p« 89. op. c i t . p. 87 <,  91 and t h i r t y one i n suites,,  Those l i v i n g i n houses were "better o f f as regards  sanitary f a c i l i t i e s , "but at l e a s t h a l f of the houses had defective heating equipment and food storage f a c i l i t i e s . tained.  Very few of the suites were s e l f con-  In most, "bathroom and t o i l e t f a c i l i t i e s were shared, and i n some, k i t -  chen f a c i l i t i e s were shared too.  Quite apart from the fact that there was over-  crowding according to the standard o f "one person per room, excluding the kitchen and "bathroom", i t i s s i g n i f i c a n t that o f - a l l the f i f t y nine patients, i n only eleven cases was i t possible f o r the patient to have h i s own room* Overcrowding Apart from the opportunities overcrowding o f f e r s for the spread o f i n f e c t i o n i t can cause emotional c o n f l i c t s o f various kinds due to lack of privacy for any family member; i t can make i t impossible to show adequate r e s pect for the r i g h t s o f others; I t engenders resentment when one's r i g h t s are interfered with; i t fosters uncongenlality between family members;.it helps to cut o f f young people from normal s o c i a l relationships; I t i s the most potent single factor i n the continuation o f deleterious l i v i n g habits; i t prevents concessions which must be made to the patient because o f h i s i l l n e s s ; i t can impose a tremendous s t r a i n on both patient and family, from which there is.no release when there i s no privacy. I t i s quite true that people react to unsatisfactory l i v i n g conditions i n a v a r i e t y o f ways, but most people i n the sample group expressed some degree of f r u s t r a t i o n with their l i v i n g accommodation. Children I t i s dangerous to expose children to an open case of tuberculosis because i t i s impossible to control the amount o f i n f e c t i o n the c h i l d receives. There i s no way o f f o r e t e l l i n g a c h i l d ' s resistance l e v e l , and the chances o f developing a progressive f a t a l Infection are much greater among exposed c h i l d r e n  92 than among non-exposed children*  ^  f o r t h i s reason tuberculosis patients are expected to separate themselves from t h e i r children at least during the period they are i n f e c t i o u s  Dif-  8  f i c u l t -as t h i s may he for the tuberculous parent and the remaining parent, i t i s * most d i f f i c u l t for the c h i l d .  An entire thesis could he devoted to the e f f e c t s  on parental tuberculosis on children.  One b r i e f glimpse o f t h i s can be i l l u s t -  rated by the case of Mrs. U, Mrs. U. Mrs. TJ's children were placed i n a foster home when she went to h o s p i t a l . She discharged h e r s e l f while s t i l l sputum p o s i t i v e ; d i r e c t l y against doctor's orders. She contacted, one of the children i n the foster home, and he v i s i t e d her on the s l y when he went to the public l i b r a r y . The ten year old boy admitted k i s s i n g h i s mother many times.. The stepfather i n v i t e d him to v i s i t them oftener, but the boy knew he was doing wrong, though he did not l i k e to disappoint them. When the parents v i s i t e d the boy a t the foster home, the foster mother asked the mother not to come again, as she considered 'the mother a very sick woman. E f f e c t s o f Tuberculosis on Family  Relationships  Many families i n the group successfully weathered the stress and s t r a i n s on relationship caused by the patient's i l l n e s s , but many others d i d not,  Ho  matter how great t h e i r concern for the patient a r e l a t i v e doe6 not always have the ego strength to assume a new family r o l e . Mrs.  Mrs. Z's case i l l u s t r a t e s t h i s ,  Z. Learned that her husband had far-*dvanced tuberculosis when he was X-rayed for a logging i n j u r y . She gave him good care i n the home, but n u l l i f i e d t h i s by p e r i o d i c drinking bouts, which l a t e r caused him to discharge himself from the h o s p i t a l through worry over her a f t e r she came to v i s i t him i n an intoxicated condition. Later he refused an a v a i l a b l e bed because one day's notice d i d not give him time to make f i n a n c i a l arrangements for her. Her dependency needs continued to be an undue s t r a i n on the patients.  Sometimes, though a wife may competently assume the breadwinner's r o l e , there are underlying d i s s a t i s f a c t i o n s which can have serious repercussions on  93 the marital relationships, as Mrs. B's case shows  0  Mrs. B» Was a f o r t y year o l d woman at the time of her husband's diagnosis,, They had a f i v e year o l d daughter,. He was c h r o n i c a l l y i l l for seven years but refused surgery, though h i s condition slowly retrogressed,, She gave him excellent care and cooperated f u l l y i n the treatment plan. Finding Mother's Allowance not enough she went out to work. A f t e r seven years she asked f o r a divorce, saying she was having to neglect her c h i l d , i n order to make a l i v i n g . Also, she knew another man who wanted to marry her. Her husband, who had known him previously, said he approved of him and was glad that h i s daughter would have a good home, as there was not much chance of recovery for him. He admired h i s wife's frankness i n the s i t u a t i o n . :  Later, he became well enough to be discharged and married a g i r l over twenty years younger than himself. Economic Problems Created or I n t e n s i f i e d by the I l l n e s s Economic hardship i s another.great d i f f i c u l t y which the family of the patient has to f a c e .  Almost a l l families i n the group complained of the d i f -  f i c u l t i e s i n t h i s area. found i t inadequate. ment i t .  Without exception, those who accepted s o c i a l assistance  Some o f them borrowed from friends or r e l a t i v e s to supple*  No matter how cooperative a family was or how great their strength,  continued economic problems sapped them eventually. This i s well i l l u s t r a t e d i n the case of the P. family. Mr. P. Was a thirty-nine year o l d married man with a four year o l d daughter when he was diagnosed minimal a c t i v e tuberculosis. Though cooperative h i s condition d i d not improve. His wife, happy, i n t e l l i g e n t and understanding, moved to a small farm holding i n Kamloops to be near him.. She took care of a l l heavy work and household duties while he made the f u r n i t u r e by hand. He wished to take vocational t r a i n i n g f o r l i g h t work. Later he had to be re-admitted to Vancouver h o s p i t a l for a r e a c t i v a t i o n of h i s l e s i o n s . F i n a l l y they bought a f l o a t house, the inside o f which they f i x e d up splendidly. Mrs. P. made the rugs, curtains, chair-covers and kept everything always bright and clean. They had no taxes and w e l l water cost them $1.00 per month. Mrs. P. c o l l e c t e d and,sawed driftwood which kept the house always warm and dry. He spent much time f i s h i n g from the f l o a t . But a f t e r several years the P's, i n spite of r i g i d budgeting and ;  94 making their own clothes and household furnishings, and c o l l e c t i n g their f u e l , could not l i v e on Mother's Allowance, so Mr So P. worked as a domestic, "but only intermittently as they could get no r e l i a b l e person to look a f t e r the small girl. On h i s discharge Mr. P. took care of the c h i l d while Mrs. P. worked i n a cannery. But the doctor ordered a cutting down of h i s household duties as being excessive. Consequently, Mrs. P. worked on the night s h i f t , or from one to f i v e p. m. only. Mr. P. spent one hour per day on a bookkeeping course, which they had to finance themselves because of her earnings. They continued to save a l i t t l e each week, as they did not wish to be l e f t homeless i f industry took over t h e i r waterfront spot and made their property valueless. They also p a i d for music lessons f o r the c h i l d . Mrs. P. continued as cheerf u l as ever. But Mr, P. became depressed a f t e r eight years of i l l n e s s , h i s lack of improvement and i n a b i l i t y to take his share of domestic r e s p o n s i b i l i t y . Inadequacy of S o c i a l Assistance Set a t Subsistence Levels I f we expect to obtain the patient's' f u l l e s t cooperation i n the t r e a t ment plan we owe i t to him to take proper care of h i s family while he i s incapacitated.  I t might be argued that the tuberculous group i n B r i t i s h Columbia i s  i n a p r i v i l e g e d p o s i t i o n as regards p u b l i c welfare allowance,  ThiB  i s undoubt-  edly true but even with the extras they are allowed, i t i s s t i l l d i f f i c u l t for a patient and h i s family to manage adequately over the long period of the p a t i e n t illness.  Basic s o c i a l assistance rates make no allowances f o r the p r o v i s i o n of  such essentials as cleaning and t o i l e t a r t i c l e s , clothing repairs, shoe repairs, household replacements such as brushes, pans, crockery, l i n e n .  I t makes no  allowance^ whatever, f o r those "semi^luxuries" which have become almost necess i t i e s i n modern l i v i n g , and which do so much i n preserving p a t i e n t s ' sense of well-being —  such things as newspapers, radio, tobacco, cosmetics, permanent  waves, movies and the occasional b a l l game. The heat and l i g h t allowance might be made to s t r e t c h i f the family used one room only, eat only one hot meal a day, and went to bed early.  If  there i s an infectious or sputum productive patient i n the home i t i s p r a c t i c -  1  95  a l l y impossible for a family or patient to have a l l the hot soapy water required to carry out the precautionary  techniques regarding dishes, l i n e n and clothes,  and stay within the f u e l allowance. The B r i t i s h Columbia S o c i a l Assistance Act states that assistance should be given according to need, and according to the standards set. standards,  however, are set at subsistence l e v e l s .  These  Cur society i s s t i l l i n -  fluenced by the philosophy that s o c i a l assistance l e v e l s must be placed as  low  as possible to a c t as a deterrent against people l i v i n g on s o c i a l assistance any longer than necessary.  I t i s considered that assistance at higher than sub-  sistence l e v e l s would undermine people's characters and make permanent paupers out of them.  These views s t i l l p e r s i s t regardless of our experience  i n depres-  sion years which provided i r r e f u t a b l e evidence that most people normally desire a f u l l e r l i f e than that provided by bare existence, and that most people want to work when the opportunity o f f e r s . It  i s the f r u s t r a t i o n caused by enforced idleness which eventually  makes some s o c i a l assistance r e c i p i e n t s unresponsive to normal s a t i s f a c t i o n s , thus r e s u l t i n g i n what we have come to c a l l "pauperization" o f the i n d i v i d u a l . Besides, as every s o c i a l worker knows, the work-ahy are not made worke 0.  -  conscious by*deterrent  s o c i a l assistance r a t e s .  Their*s i s a s o c i a l sickness  which goe^s much deeper, and f o r which that kind of punitive "therapy" i s e n t i r e l y ineffectual. Another argument u n f a i l i n g l y raised whenever s o c i a l assistance l e v e l s are discussed i s that the normal standard of l i v i n g of such as those i n the sample group barely reaches subsistence l e v e l , anyhow,  Tet a v a i l a b l e evidence  indicated that most people i n the group were i n the borderline income brackets and would not have f a l l e n to subsistence l e v e l s had not i l l n e s s pushed them over the edge.  It i s true that there was a small percentage of c h r o n i c a l l y destitute.  96 people i n the group, hut from the point o f view of tuberculosis control i t i s our r e s p o n s i b i l i t y to r a i s e such people to a better standard o f l i v i n g i n the economic scale i f only as a p u b l i c health measure, quite apart from the broader question o f their r i g h t s as human beings* There are, as Dr. Wade Hampton Frost reminds us, two conditions  favour-  ing the spread o f tuberculosis, intimate exposure and poverty* Family Attitude to Convalescence i s C r i t i c a l for Patient A l l patients spend the greater part o f their convalescence i n the home* Family a t t i t u d e s are e s p e c i a l l y important at handled understandingly ations*  t h i s time.  The patient needs to be  but normally, and with due regard for h i s physical l i m i t *  The family, l i k e the patient has to make major adjustments i n t h i s phase  of the patient's i l l n e s s .  They have had to devise new patterns of family l i v i n g  during the absence o f the patient. for the returning patient©  Now they must r e v i s e them and make a place  Casework help at t h i s point i s often a great  facil-  i t a t o r of the readjustment process f o r both family and patienW The onus for non-cooperation i s not always on the family, for i n some cases the returning patient refuses the family's proffered assistance.  There  were cases where the family offered the p a t i e n t a home, y e t saw t h e i r o f f e r rejected i n favor o f a c i t y boarding house.  In some homes there was constant  f r i c t i o n over the patient's r e f u s a l to follow r e s t and exercise orders.  There  was much evidence to j u s t i f y the view that convalescence i s the most t r y i n g time for the family as well as the patient* Problems o f Families where more, than one Member i s Tuberculous One  tuberculous patient i n a family creates a, burden, but more than  one patient i n a family has a devastating e f f e c t on the whole family structure. The  case o f the A. family i s presented as an i l l u s t r a t i o n . The A. Family. Consisted of parents and s i x children, the eldest o f whom was sixteen. Mr. A. was diagnosed and accepted h o s p i t a l -  97 i z a t i o n . In the following year Mrs. A. contracted tuberculosis and was h o s p i t a l i z e d . She worried about her children i n foster homes. In the opinion of the p u b l i c health nurse, the family was considered to be somewhat l a x regarding p r e cautionary techniques, and housekeeping standards were not high. Nevertheless, family bonds were strong. There was always a well-kept vegetable garden and chickens as a d d i t i o n a l food supplies, and as time went on the family purchased modern home appliances, as f o r example, a washing machine. On discharge the father took unsuitable heavy work digging ditches which was a l l he could get. The eldest daughter contracted the disease, was h o s p i t a l i z e d and made a good. recovery, following which she took a stenographic course. The youngest daughter had a healed primary complex. Because h i s work was too heavy the father reapplied for s o c i a l assistance t i l l he could get l i g h t e r work. This was refused because o f the earnings o f the two eldest sons, the younger of whom l e f t home to go logging, where he got i n with a "bad" crowd, started drinking and gambling. He was ashamed o f the family h i s t o r y o f tuberculosis, t r i e d to conceal i t and neglected to report f o r X-ray checkups though f e e l i n g i l l . He contracted debts o f over two hundred d o l l a r s which h i s s i s t e r repaid, The eldest son .supported the family, though planning to be married himself„ When reporting for h i s routine X-ray checkup, the eldest boy was diagnosed as moderately advanced a c t i v e tuberculosis. The younger boy f i n a l l y consented to X-ray and was found to have f a r advanced a c t i v e tuberculosis. Both boys entered h o s p i t a l . The younger hoy died there. Mrs, .A, was distraught and refused to l e t the youngest son take a paper route for fear he would break down too, " I give them good meals, good clothes and a good home, yet one by one they get i t " . While i n Tranquille the eldest son learned that h i s father was working i n a foundry because the family had been granted only reduced s o c i a l assistance on the grounds that the daughter was earning. He became b i t t e r , saying that he had been pro« mised that h i s people would he looked a f t e r i f he entered h o s p i t a l . A l l he asked was that h i s father be helped to get l i g h t e r , more suitable work, so that s o c i a l assistance would not be necessary f o r h i s family. Evaluation of factors determining successful management o f the disease There i s no accepted index o f success or f a i l u r e i n the management o f illness.  Yet examination of the case h i s t o r i e s i n the sample group shows that  the degree o f cooperation o f the patient and h i s family are o f paramount imports  98 ance, and might he said to he the greatest single factor influencing success or failures A patient's cooperation i s affected by many things. determinant i s what i s commonly c a l l e d emotional maturity. thing.  The most important  This i s a complex  I t i s most frequently found as the by-product of a happy l i f e experience  meeting a l l areas of need i n the formative years.  Its hallmarks are the problem-  solving attitude towards l i f e , freedom from undue mental c o n f l i c t , the a b i l i t y to be guided by r e a l i t y p r i n c i p l e s and long term values, capacity to love someone other than one's s e l f , good work adjustment, and a l l the other c h a r a c t e r i s t i c s of the well-adjusted person. In almost every case i n the sample group where the patient was unco** operative, there was conspicuous absence o f emotional maturity.  Those patients  who managed t h e i r tuberculosis successfully, usually showed evidence of. maturity i n other areas o f l i v i n g .  The importance o f this i n r e l a t i o n to medical s o c i a l  work and to s o c i a l services i n general cannot be  overemphasized*  CHAPTER 5,  In our modern world, community organization o f welfare services i s , or should be everybody's business.  But i h our complex, pressured way o f l i f e  i t i s easier to leave i t to the other fellow.  Even with the cooperation of  patient and family, the tuberculosis control program i s i n e f f e c t u a l without the understanding and cooperation o f the general p u b l i c . culosis,  n  "The battle against tuber-  as Osier once said, " i s not a doctor's a f f a i r ; i t belongs to the entire  public"? From the health and welfare view point, tuberculosis presents the most d i f f i c u l t administrative problems.  Because o f i t s communicability,  i t involves  a multitude o f s o c i a l implications which no other disease presents to the same degree.  Ojoarantine regulations cannot be established or enforced as i n other  communicable diseases, because i t i s impossible to estimate the time interlude between i n f e c t i o n and the onset o f the acute disease.  Some patients, i n spite o f  w i l l i n g cooperation and long periods o f sanatorium treatment, remain sputum p o s i t i v e a l l their l i v e s , so that f o r them quarantine regulations are tantamount to l i f e imprisonment,  1. "Anybody dealing with tuberculosis", says Rich , " i s impressed by the great frequency with which i t i s impossible to trace the source of i n f e c t i o n , and the number o f people who have open lesions without knowing i t . " Out o f the sample group t h i r t y - f o u r per cent could name a known contact,  1. Rich, op. c i t . p . 896. In h i s footnote (1019) Rich quotes one observer, Z a l l e , who could not f i n d the source of i n f e c t i o n i n 71$ o f a group o f adults, which Rich considers a reasonable average.  100 excluding the three cases where there were occupational exposures through work in tuberculosis hospitals*  Doctors estimate that by the time a tuberculosis  case has gone unrecognized u n t i l the far advanced stage, the person has infected at least five other people*  On this basis the group would be responsible for  the infection of about 150 people.  Figure 7 illustrates the incidence of sputum-  positive patients in the sample group.  At least sixty—four per cent of the  group had positive sputum at some time during their illness, twenty-five per cent of these were sputum-positive at diagnosis. Therefore the community i n i t s own interest and the patient's, should take responsibility for tuberculosis control services* Figure-7  Showing Incidence of Sputum Positive Cases in the Sample Group  KEY Families with children  TOTAL  64$  Families without children  ESQ  People living alone  I  Scale - 1mm. *»1 case  I  Positive Sputum at Diagnosis B.B. - Positive sputum rate i n people living i n families Positive sputum rate i n people l i v i n g alone  11$  3?  Positive Sputum Later ~ 66$ — 64$  Essentials cf a Good Tuberculosis Control Program The f i r s t problem which the disease presents to the community i s responsibility for an adequate program of case-finding.  This can only be done  through the provision of a complete range of diagnostic services, free and a v a i l -  101 able to a l l *  The most important  diagnostic t o o l i s mass radiography of large  numbers of apparently healthy people*  This has the a d d i t i o n a l advantage that  a high percentage of cases w i l l be discovered i n the e a r l y stages* Presuming that there are enough beds, t h i s should r e s u l t i n p a t i e n t s being admitted to sanatoria while the disease i s s t i l l i n the minimal stage. The stage of the disease at which most patients are admitted to h o s p i t a l i s , say  1 some a u t h o r i t i e s , "the most important.single factor i n prognosis". The next e s s e n t i a l of an adequate tuberculosis control program i s the development of adequate treatment f a c i l i t i e s , both medical and s o c i a l .  These  have already been outlined i n an e a r l i e r chapter* Tuberculosis c o n t r o l programs are judged by such standards as required r a t i o of beds to deaths, r a t i o o f known cases and deaths, and the stage of disease at which most patients are admitted to and discharged from h o s p i t a l . According to these r e l i a b l e guides the B r i t i s h Columbia Tuberculosis Control Program ranks high.  But even i f a community has the required r a t i o of beds to  deaths this i s not s u f f i c i e n t i f there i s s t i l l a waiting l i s t for sanatorium beds.  Some a u t h o r i t i e s believe there should be a bed f o r each case o f tuber-  c u l o s i s regardless of the stage o f the disease.  Nor i s i t economical to cut down  on the waiting l i s t by discharging p a t i e n t s , whose disease i s quiescent, sooner than would be medically advisable under more favorable conditions, to make way for  those i n the more acute stages of the disease* The only r e a l t e s t of the.adequacy of the community's tuberculosis  services i s that a l l the required services are r e a d i l y a v a i l a b l e following d i a g nosis, or at the point i n treatment that they are required*  1*  Chadwick and Pope.  op. c i t . p.  73*  102 A Tabercul68l8 0ontrol Program Operated In a S o c i a l M i l i e u . Hot a SociaT Vacuum  Ho tuberculosis c o n t r o l program, however complete i t s medical services, <••')....< can be e f f e c t i v e unless adequate a n e i l l i a r y s o c i a l services e x i s t i n the sanity.  com-  I t i s not generally r e a l i z e d that the patient's a b i l i t y to benefit f u l l y  from medical care depends p r i m a r i l y on two things  f i r s t , h i s adjustment to  h i s disease, and secondly, the f u l l e s t possible r e s o l u t i o n of the s o c i a l problems influencing h i s i l l n e s s .  Without s o c i a l services the s o c i a l aspects of  c u l o s i s cannot be treated.  tuber-  These are so important that tuberculosis has been  c a l l e d "a s o c i a l disease with medical i m p l i c a t i o n s % The costs of these services must be borne w i l l i n g l y by the community. It was  estimated that i n 1952 i n B r i t i s h Columbia, the average cost of a- tuber-  c u l o s i s case was  $14,000, including money spent on the patient's family as well  as on h i s medical care.  Understandably, f i s c a l p o l i c i e s play an important part  i n tuberculosis control, but i f they are allowed to determine the q u a l i t y and. quantity of tuberculosis c o n t r o l services then the whole community i s the l o s e r i n the long run.  Better services mean that more patients w i l l get w e l l i n l e s s  time, and more w i l l stay w e l l .  <,  Responsibility f o r R e h a b i l i t a t i o n Services Another problem f o r the community i s the development o f adequate rehabi l i t a t i o n services, the l a c k o f which i s a great weakness i n the B r i t i s h Columbia tuberculosis control program.  Having spent.$14,000 on one case, common  sense d i c t a t e s that a l l p o s s i b l e steps be taken to prevent spending another $14,000 on the same person, which occurs unfortunately, through the lack of adequate r e h a b i l i t a t i o n services.  Another aspect of t h i s lack of service shows  i n the fact that eighty per cent of those released from sanatoria as cured die within ten years.  1  Evidently, the b a c i l l u s i s not s o l e l y to blame.  1. See address given by Dr. Myrom C. Weaver a t the annual general meeting of the Vancouver Preventorium, 1952.  •->;'£•  103 Adequate r e h a b i l i t a t i o n services include vocational r e t r a i n i n g and job placement programs, and also sheltered workshops f o r those unable to com- ' pete i n the general labor market.  To be therapeutically sound, the workshop  program w i l l always need some degree o f subsidization.< But the costs o f maintaining patients i n h o s p i t a l and on s o c i a l assistance a f t e r breakdown are higher than the costs o f enabling patients to earn their l i v i n g as f a r as they can. The psychological gain f o r p a t i e n t and h i s family are i n c a l c u l a b l e . Responsibility f o r Preventive Measures In p r a c t i c e , treatment and prevention cannot be divorced.  Early  i s o l a t i o n o f Infectious cases, and X-ray follow up of contacts, a r e as much preventive as therapeutic.  A high l e v e l o f public hygiene i n general w i l l a s s i s t  the s p e c i f i c tuberculosis c o n t r o l measures. Per many years tuberculosis research workers have, c a r r i e d on extensive experiments to f i n d a method o f producing a s i g n i f i c a n t degree of immunity without.producing progressive disease.  Innoculation with B a c i l l u s Calmette-  Guerin i s the c l o s e s t approximation to t h i s y e t discovered.  Since i t s develop-  ment i n Prance i n 1908 by Galmette and h i s associate Guerin i t has been widely used i n Prance and Germany for i n f a n t s , and i n Scandinavia  for student nurses.  Other countries were l e s s receptive o f i t , though B r i t a i n , Hew Zealand, U.S.A. and Oanada have a l l begun to use i t recently. .1 Authorities d i f f e r regarding the merits o f B.C.G., though i t s advocates claim that the vaccine produces a r t i f i c i a l l y what the i n d i v i d u a l would have got by a small primary i n f e c t i o n , thus protecting against a massive i n 1. Dr. C. J . Seckwith, President o f the Canadian Tuberculosis Association said a t the Annual Meeting o f that society i n 1952 that most disease could be eliminated i f a l l were vaccinated, and that the negative reactor i s four times more susceptible than the p o s i t i v e . Bich, op. c i t . p. 810, i s i n c l i n e d to think i t i s advantageous i n many cases, though bad f o r a minority - which would put i t i n the same category as small pox and diphtheria vaccinations and i n noculations.  104 f a c t i o n l a t e r on.  Some a u t h o r i t i e s hold that the e f f e c t of our present  tuber-  c u l o s i s control p o l i c i e s i n deferring primary infections u n t i l adolescence and early adulthood may way  be undermining the resistance of the race, and paving the  for future increase i n the severity of the disease.  Problems of the Tuberculous Patient who  Lives Alone  One quarter of the patients i n the sample group were unattached l i v i n g alone.  This group presents  men  s p e c i a l problems to the community.  Many a u t h o r i t i e s believe that t h i s group i» the r e a l crux of the spread of tuberculosis i n a community.  I t was  i n t e r e s t i n g to note that i n the sample  group f i f t y per cent of those l i v i n g alone were i n the f a r advanced stage of tuberculosis at diagnosis as compared with twelve per cent i n the r e s t of the group.  This might seem to confirm the view that t h i s group consists mainly of  the dregs of society - the vagrants, the a l c o h o l i c s , the mental defectives, the drug addicts and others.  I t i s true that there was a minority of such people  among the group l i v i n g alone,  The majority, however, were men who  had good work  records i n u n s k i l l e d labouring jobs, and d i d not become p u b l i c charges t i l l they contracted tuberculosis.  I t was  often just as d i f f i c u l t for these men  just to a reduced income at s o c i a l assistance l e v e l as i t was  to ad-  f o r patients  who  had f a m i l i e s . These patients are often judged to be among the l e a s t cooperative patients because t h e i r background and Lack of family t i e s make i t d i f f i c u l t to r e h a b i l i t a t e them.  As regards the sample group, there was no evidence to sup-  port the theory that such people are i n general l e s s cooperative p a t i e n t s .  If  there i s a higher incidence o f breakdown i n t h i s group, i t should be remembered  1, Bich, op. c i t . p. 797, c i t e s the opinion of Cobbett, an E n g l i s h observer who stated t h i s i n h i s book "The Pause o f Tuberculosis», Cambridge University Press, London, 1917. p» 86  105 that t h i s group encounters exceptional d i f f i c u l t i e s i n convalescence and r e - ' kahilitation.  While I t i s i n t e r e s t i n g to speculate on the emotional compon-  ents of the i l l n e s s i n t h i s u s u a l l y close-mouthed, who  lone-wolf type of i n d i v i d u a l  f o r various reasons have severed their f a m i l y ' t i e s , i t does not necessarily  follow that t h e i r psychological c o n f l i c t s and personal problems are necessarily more sever© than those o f p a t i e n t s l i v i n g i n family s e t t i n g s . The p a t i e n t who returns to l i v e i n a room o f h i s own i s "beset by d i f f i c u l t i e s unless he i s lucky i n h i s landlord or friends*  Few i n the group were  lucky i n these respects and most of them found that the combination of unsuit-^ able housing and looking a f t e r t h e i r physical needs meant overdoing t h e i r exercises* There are not enough boarding homes to take care of a l l the patients, and the patient without housekeeping f a c i l i t i e s , though he gains i n rest, loses f i n a n c i a l l y by eating a l l or most meals i n restaurants; and the "tuberculosis extras" soon go the same way*  Eating out can also i n t e r f e r e with exercise  schedules e s p e c i a l l y i f stair-climbing i s involved*  Mr. I i ' s case was  typical.  Mr. X. Was a single man l i v i n g i n a hotel room. He complained that h i s allowance was not enough and he had to borrow small amounts from friends, but this he could do no longer. The City S o c i a l Service Department advised him to save by cooking h i s own meals. He said he had no cooking u t e n s i l s but was t o l d he should apply f o r them through the Bad Cross Society. This episode upset him and changed h i s previous f r i e n d l y relationships with the Department* It i s to be noted that people l i v i n g alone do not benefit from the s o c i a l assistance concessions to tuberculous patients to idle same extent as > p a t i e n t s l i v i n g i n family settings*  The maximum amount o f s o c i a l assistance  for a patient l i v i n g alone never exceeds the current c i t y boarding home rate, which at present Is  $55*00 a month. .  106 Almost without exception t h i s group had the choice o f returning to unsuitable heavy jobs and thereby r i s k i n g a breakdown, or remaining on s o c i a l assistance, because o f lack o f vocational t r a i n i n g and job placement f a c i l i t i e s . This group presents a special community problem, but not a l l the d i f f i c u l t i e s a r i s e from within the group i t s e l f .  Their degree o f cooperation can  not be f a i r l y judged v/hen there i s no suitable r e h a b i l i t a t i o n program geared to t h e i r s p e c i f i c needs. The Uncooperative -Patient - a Challenge to the Community It may be thought that a community has f u l f i l l e d a l l i t s responsibi l i t i e s i n tuberculosis c o n t r o l when i t has set up a program which f i n d s , treats, and r e h a b i l i t a t e s tuberculosis sufferers, and provides as many preventive measures as i s humanly p o s s i b l e .  But i t i s one thing to have a good program  and another thing to get the people who need i t to u t i l i z e the program constructively.  No tuberculosis control program can be considered apart from the  people f o r whom i t i s intended. It i s appropriate at t h i s point to discuss the community aspects of. the problem o f "the uncooperative patient", that much-maligned m i s f i t who would be better described as "misunderstood" or mishandled • 0  of the group could be c l a s s i f i e d as uncooperative.  ,,  A considerable number  The following cases are  representative. Mr.  0. Was a cheerful l i t t l e a l c o h o l i c who was always going to reform but never quite got round to i t . Whenever he was i n h o s p i t a l h i s lesions healed w e l l , but he never stayed long enough t o complete h i s cure. He was sure to be found i n one o f three places — i n h o s p i t a l , i n j a i l for shopl i f t i n g , or with a bootlegger family with whom he l i v e d and fought with i n the i n t e r v a l s when he was not i n an institution.  Mr. H. Was a married logger who drank h e a v i l y . He had two children, and l i k e d the l a d i e s . A f t e r contracting tuberculosis he  107 t e r r i f i e d h i s wife by h i s complete lack of concern f o r h i s own and h i s family's protection* She contracted the disease and died, and r e l a t i v e s took the children, though Mr* E. retained l e g a l guardianship* He was discharged from hospital for repeated v i o l a t i o n of sanatorium rules* He thought he was "putting one over" on the doctors because h i s X-ray showed improvement even while he wa drinking heavily* Though sputum p o s i t i v e he ate i n r e s t a u r ants, and when he got hopelessly i n debt he decided to r e enter h o s p i t a l . He said he d i d not want to be cured. He was better o f f on s o c i a l assistance. Obviously, i n both these cases the primary problem was not tuberculosis.  This was also true i n the case of Mr. v., whose lack o f cooperation  stemmed from mental d i s a b i l i t y or mental i l l n e s s . Mr. V* Was a f o r t y year o l d single carpenter, who refused to believe he was i l l . He t o l d the s o c i a l worker he had "passed" h i s X-ray and the doctor said he was cured. A c t u a l l y h i s diagnosis was "moderately advanced tuberculosis". He u s u a l l y l e f t h i s room early i n the morning, wandered down town a l l day, often i n s u f f i c i e n t l y clad, and returned to h i s housekeeping room l a t e at night. He showed marked schizoid tendencies but refused p s y c h i a t r i c examination* As he was not committable there was nothing the doctor or s o c i a l worker could do* I n t e l l e c t u a l a b i l i t y does not n e c e s s a r i l y mean p a t i e n t cooperation, as the case of Mr. F. shows* Mr.  F.  Was a U n i v e r s i t y student, married, and was a contact o f h i s brother who had signed himself out of h o s p i t a l and taken h i s cure at home. Though a f a r advanced a c t i v e case, Mr. F. refused h o s p i t a l i z a t i o n and t o l d the p u b l i c health nurse he was under the care of a p r i v a t e physician, though i t was known that he d i d not attend h i s doctor regularly* His D.V.A. grant was suspended f o r a time because he would not follow medical recommendations; but as h i s wife was working, they were able to get along f i n a n c i a l l y . His condition improved enough to allow him, eventually, to attend University p a r t time*  For i s a person who  i s a community problem i n one sense n e c e s s a r i l y  so i n the management o f t h e i r tuberculosis, as the case of Miss W. shows. Miss  W. Was an unmarried mother with four children, three of whom  108 were the product of her l i a i s o n with a married man. She had been i n receipt o f s o c i a l assistance since the b i r t h of her f i r s t c h i l d . She would not accept employment as she considered her place was a t home with her children, to whom she gave excellent care. She was a cooperative patient and soon began to make a good recovery. When she was to be h o s p i t a l i z e d a male f r i e n d , a cook on a transcontinental t r a i n who had wished f o r some time to marry her, came forward and offered to support the c h i l d r e n and maintain a home for them i n Vancouver, which he d i d . The H. family were a community problem long before the onset o f their tuberculosis.  The combination o f i n t e r i o r and exterior pressures  i n t h i s family  were so great, that to them, t h e i r tuberculosis was almost i n c i d e n t a l . l y they a l l treated i t as an e t cetera". H  Certain-  From their viewpoint, the community  was not interested i n helping then u n t i l they became i n f e c t i o u s to other people. H.  family Were Doukobors from the p r a i r i e s , who had a hard time f i n d i n g l i v i n g accommodation during the war years. Mr. H. was j a i l e d for drunken d r i v i n g . Mrs. H. complained o f intermittent non-support, and summonsed him f o r assault. Mr. H's mother l i v e d with them, and apart from being the source of much family s t r i f e , was also believed to be the source o f the family's tuberculous i n f e c t i o n , but she always refused to be examined. When given h i s diagnosis, Mr. H. refused h o s p i t a l i z a t i o n t i l l he could f i n d h i s family a home, then s a i d they could not p o s s i b l y exist on s o c i a l assistance, so he would have to keep on working, which he did, u n t i l h i s death. When Mrs. H. was diagnosed, she denied she had the disease, l a t e r also refused h o s p i t a l i z a t i o n , because she could not bear to be parted from her children, (with whom she was a l t e r n a t e l y o v e r - s t r i c t and over-indulgent) and also because "those who give i n and go to bed d i e " . The eldest married daughter took her c h i l d from the preventorium, following her own return from h o s p i t a l . The eldest son, a juvenile delinquent, was c o n t i n u a l l y i n and out o f j a i l , and was also diagnosed. Another daughter, o f borderl i n e i n t e l l i g e n c e , was a l s o delinquent. The youngest daughter had a primary i n f e c t i o n . The whole family o f nine l i v e d i n two rooms i n a converted store, the only accommodation they could f i n d . Their a t t i tude was that eighty per cent o f the children i n the neighbourhood had tuberculin p o s i t i v e skins, so why p i c k on them? Besides, Tuberculosis Control had known f o r a long  109 time that t h e i r l i v i n g quarters were unsatisfactory, but nobody had done anything about i t * Perhaps the department would l i k e to loan, them the $500 necessary to purchase the $50 worth of furniture i n the only other place they could f i n d which would take children? Devising an Approach to the uncooperative Patient In every community today, there are adults who a r e not mature emotionally.  As children, they d i d not, owing to stresses of various kinds w i t h i n  t h e i r families, receive the love, understanding and security so necessary to balanced emotional growth*  Many among them belong to f a m i l i e s who have become,  i n the accepted parlance, "pauperized". Over the years, as t h e i r troubles mount, and t h e i r r e a l needs go unmet,  their a t t i t u d e s crystal!ze into that a n t i - s o c i a l behaviour not expected  from adult human beings and which i s unacceptable to t h e i r fellow men.  While  i t i s possible to i s o l a t e them f o r treatment of their tuberculosis, i t i s u t t e r l y impossible to i s o l a t e them f o r their a n t i - s o c i a l behaviour.  For good or  e v i l , they are part of our s o c i a l and economic body, and t h e i r s o c i a l i l l - h e a l t h a f f e c t s the whole s o c i a l body*  "For the good of the whole, as well as f o r that 1  of the sick i n d i v i d u a l , we must provide remedial treatment f o r the sick p a r t " . When such people are stricken with the b a c i l l u s i n a d d i t i o n to a l l t h e i r other d i f f i c u l t i e s , most of them w i l l be uncooperative p a t i e n t s . could not be otherwise.  It  From both the medical and the community point of view,  they w i l l remain uncooperative and thereby a potent source of the spread of infection, u n t i l our services are strong enough and ample enough to meet a l l t h e i r legitimate needs.  1, Govan, Elizabeth "Public Assistance i n Modern Society", Canadian Welfare. V o l . ' x x v i i l Ho. 1, May 1952, p, 5  110  r  The a t t i t u d e o f the general p u b l i c to these people i s characterized "by lack o f understandings  I t i s sometimes d i f f i c u l t to remember, as Charlotte  Towle reminds us that "Parents who f a i l have frequently been f a i l e d ... that 1 we give as we are given to ... and that none o f us can give from a vaccuum". One o f the problems facing the community i s how to bring about a change o f a t titude towards these people.  I t w i l l not become about by chance.  P u b l i c edu-  cation regarding community r e s p o n s i b i l i t y f o r such s o c i a l i l l s i s only part o f the answer.  I t i s fundamentally r e l a t e d to the much deeper question of how we  can equip people f o r the complexities o f l i v i n g i n modern democratic society. To answer that question i s the great challenge to our c i v i l i z a t i o n . There i s no short cut to making uncooperative people cooperative.  The  process i s as slow as nature's healing of tubercular lesions, and almost as uncertain.  We cannot make them cooperate i n the treatment o f t h e i r disease.  We  can only make them want to, through meeting t h e i r basic needs i n other areas of l i v i n g .  I f we wish them to accept t h e i r community r e s p o n s i b i l i t i e s , we i n  the community must respect t h e i r fundamental r i g h t s as human beings. The community must recognize the fact that some people have been so bruised by l i f e that they cannot be reached. from "inoperable  s o c i a l cancer".  They might be s a i d to be suffering  They are s o c i a l l y irreclaimable and we must  accept r e s p o n s i b i l i t y f o r them as we do f o r the chronic tuberculosis patient who cannot overcome h i s disease. But to those who can respond, and to those who come i n the future, the community has a d i f f e r e n t r e s p o n s i b i l i t y .  We must provide for them the  r e q u i s i t e services to a s s i s t them to b u i l d up i n t h e i r formative years those human relationships which are the root of t h e i r inner s t a b i l i t y and s e c u r i t y 1, .Towle, Charlotte, "Common Human Heeds", Public Assistance Report Ho, 8 U.S.A. Federal Security Agency; S o c i a l Security Board, Washington. 1945, P» 6?  Ill as individuals, and the foundation of s o c i a l i z e d and considerate "behaviour towards their fellows.  We w i l l thus create f o r the community c i t i z e n assets  as against c i t i z e n l i a b i l i t i e s .  Chapter 6.  Tuberculosis Control i n the Future.  Cohclusions and Becommendations  In reviewing present success i n our b a t t l e with the b a c i l l u s , we cannot escape the question:- "Are we doing a l l we can, w i t h i n the present l i m i t s of our knowledge, to control and eventually eradicate tuberculosis?"  Pasteur  once said that i t i s within the power of man to cause a l l germ diseases to disappear from the earth*  Some eminent medical a u t h o r i t i e s at the beginning  of t h i s century prophesied that by 19^0 tuberculosis would be an almost extinct medical c u r i o s i t y i n western c i v i l i z a t i o n *  And indeed, i n the opinion of two  eminent present day a u t h o r i t i e s j n  S u f f i c i e n t knowledge i s already available to make the eradi c a t i o n Of tuberculosis a p o s s i b i l i t y w i t h i n a few generations i f the established techniques are e f f e c t i v e l y a p p l i e d * . T h e heavy t o l l taken by tuberculosis economically and s o c i a l l y f o r centuries can be reduced to a minor public health problem i n one generation, and eventually eliminated altogether by p u t t i n g into p r a c t i c e the knowledge we have o f i t s epidemiology and treatment".^  I t i s evident that achievement o f t h i s goal i n B r i t i s h Columbia would necessitate improvements i n p r a c t i c a l l y a l l aspects o f the e x i s t i n g tuberc u l o s i s control services. Becommendations regarding. Medical -Services The standard o f medical services i n tuberculosis control i n B r i t i s h Columbia i s extremely high, yet e x i s t i n g d e f i c i e n c i e s negate many o f the  v  p o s i t i v e features. One o f the most important i s the shortage of sanatorium  1*  Chadwick and Pope,  op. c i t .  p. v i i and p. 100  113 teds*  At the time t h i s survey was made the new Pearson Memorial Hospital,  opened i n March, 1952,  had not "been "built.  Though i t was hoped, and was  act-  u a l l y stated i n the press, that t h i s unit of 264 beds would more than compensate for the shortage, t h i s expectation has not been r e a l i z e d i n p r a c t i c e .  It  has s t i l l not enabled tuberculosis control.to meet the c r u c i a l p r a c t i c a l test of immediate admission following diagnosis.  Therefore, according to the best  standards, there i s s t i l l a bed shortage which should be remedied. There i s also a shortage o f trained personnel, e s p e c i a l l y medical personnel i n the tuberculosis f i e l d . Government medical appointments,  This i s p a r t l y due to lower s a l a r i e s i n  as compared with the income which medical  personnel can obtain i n p r i v a t e p r a c t i c e .  At present the appointment of Medical  Director of Taberculosis Control i s not on a f u l l - t i m e basis, as i t should be i n a comprehensive program f o r tuberculosis control.  Higher s a l a r i e s are a  necessity i f tuberculosis control work i s to a t t r a c t top people i n the medical profession. Recommendations regarding Nursing Services B r i t i s h Columbia i s one of the few provinces to include a course i n tuberculosis nursing i n the curriculum i n recognized Schools of Nursing. might be expected that interest i n the tuberculosis f i e l d would thus be but there i s s t i l l a shortage of tuberculosis nurses.  It aroused,  But there has always  been, except i n a few p r i v i l e g e d spots i n the world, a chronic shortage of nurses of a l l types i n h o s p i t a l s .  Remedial measures to overcome this d e f i c -  iency should be. directed towards improving conditions i n the nursing p r o f e s s i o n as a whole. Recommendations regarding l e g i s l a t i o n and h o s p i t a l i z a t i o n . E x i s t i n g B r i t i s h Columbia l e g i s l a t i o n allows f o r compulsory removal  114 1 of proven i n f e c t i o u s cases o f tuberculosis to h o s p i t a l , hut does not provide any authority f o r keeping them there. i f they so wish,  They are free to walk out the same day  Also, as long as the bed shortage continues, i t i s somewhat  ludicrous to i n s i s t on h o s p i t a l i z a t i o n o f the uncooperative when there i s a waiting l i s t o f p a t i e n t s . Consideration should be given as to the p o s s i b i l i t y o f amending p r e sent l e g i s l a t i o n to allow f o r the protection o f the community from the proved non-cooperative sputum-<positive patient while a t the same time p r o t e c t i n g the r i g h t s of the cooperative  sputum-positive patient for whom compulsory h o s p i t a l -  i z a t i o n for the duration o f h i s infectiousness to others would be tantamount to l i f e imprisonment.  A l l such l e g i s l a t i o n would have to be used extremely  cautiously. There would also have to be some decision as to the p o s i t i o n o f those patients who had not acquired B r i t i s h Columbia residence according to the "Residence and Responsibility Act", because a f t e r a l l , from the public health point o f view, the non-resident  i s as i n f e c t i o u s to the community as the resident.  Tree h o s p i t a l i z a t i o n f o r tuberculous patients i s recommended.  At the  present time, the O f f i c e o f the Collector o f Hospital Revenue decides whether a patient and h i s family s h a l l pay h o s p i t a l rates i n f u l l , i n part, or be exempt.  While i t i s quite true that many patients can pay a l i t t l e , the chron-  i c i t y o f the i l l n e s s i s u s u a l l y such a d r a i n on the family resources that the a d v i s a b i l i t y o f depleting them further i s to be questioned.  Often by the time  the patient reaches r e h a b i l i t a t i o n , there i s l i t t l e l e f t to help r e - e s t a b l i s h the family according to i t s former standard o f l i v i n g .  Observers i n U.S.A.  have noted how often even small payments which the family agrees w i l l i n g l y to  1. See "Regulations to the Control o f Communicable Diseases Act", 1945, p.p. 15-16, King's P r i n t e r , V i c t o r i a , B. C. 1945*  115 pay i n the •beginning "become an i n t o l e r a b l e "burden as the i l l n e s s drags on* Recommendations Regarding Building of Hospitals Hear Urban Centres It i s .recommended that future i n s t i t u t i o n s for the treatment of c u l o s i s should be b u i l t closer to the larger urban cetres.  tuber-  Since i t i s acknow-  ledged that i n the treatment of tuberculosis, no one climate i s superior,  there  seems to be l i t t l e j u s t i f i c a t i o n for s t r a i n i n g the f a b r i c s of family l i v i n g further, and i n t e n s i f y i n g the pain of separation for tuberculous patients and their families. Recommendation Regarding.Mass Radiography Inauguration of a p u b l i c education program to encourage annual r a d i o graphy of a l l residents of the province i s recommended as an implementation of the e x i s t i n g case-finding program* for  Compulsory X-ray's at s i x monthly i n t e r v a l s  a l l food handlers i s recommended*  This could be made a condition of employ-  ment as i t i s a t present f o r h o s p i t a l employees* Recommendation Regarding general Use of B..C..G* At present,  '  the use of B.C*S* innoculations i n B r i t i s h Columbia i s  confined to c e r t a i n s p e c i a l i z e d groups.  A program of p u b l i c education,,would  a s s i s t p u b l i c acceptance of i t as a general preventive measure, which might be extended to other groups i n the population, and might eventually become accepted on the same basis as innoculations against other i n f e c t i o u s diseases. Recommendations Regarding Medical Research It has been previously stated that the control of tuberculosis i s within our grasp i f we apply the technical knowledge already a v a i l a b l e .  It  therefore seem somewhat incongruous to place extension of medical research on the l i s t of p r i o r i t i e s i n tuberculosis c o n t r o l .  high  Yet i n the f i n a l analysis,  we do not yet know what makes people get tuberculosis, nor how when they do.  may  to cure them  The most we can do, even with a l l our modern medical  techniques,  116 i s to a s s i s t by a r t i f i c i a l means the "body's natural defences to overcome the disease.  There i s as yet np s p e c i f i c cure f o r tuberculosis, no substitute  method f o r nature's slow way of healing tubercular l e s i o n s .  U n t i l there i s , we  can-  not expect to reduce the long protracted period of incapacitation which tuberc u l o s i s now  causes,  Recommendations Regarding Psychosomatic  Orientation i n Schools of Medicine  The adoption of the psychosomatic approach i n Schools of Medicine i s recommended so that medical students become oriented to t h i s method of study and treatment of their patients by the time they become p r a c t i t i o n e r s , and can thus more adequately f u l f i l l t h e i r r e s p o n s i b i l i t y to treat "the whole Some medical men  man".  today v i z u a l i z e that i n the medical p r a c t i c e of the  future the general p r a c t i t i o n e r w i l l come into h i s own again.  He w i l l however  have undergone a metamorphosis, from which he w i l l re-emerge with p i v o t a l importance i n the whole structure of medical services.  He w i l l be the p r a c t i t i o n e r  trained i n the basic s p e c i a l i t y of "human biology" - that i s , the study of the human personality and human relationships - and w i l l c a l l i n as h i s t e c h n i c a l assistants the various s p e c i a l i s t s who  today outrank him.  Recommendations. Regarding.Public Health Services Public Health services i n B r i t i s h Columbia are of a high standard, though n a t u r a l l y not so w e l l developed i n the r u r a l areas as i n urban centres. One would, however, l i k e to see an enlargement  of concepts i n this area to i n -  clude what has been c a l l e d " s o c i a l medicine", that i s : "The idea of medicine applied to the service of man as socius, as fellow or comrade, with a view to a better understanding of and more durable assistance to a l l h i s main and contributory troubles which are inimicable to active health and not merely to removing or a l l e v i a t i n g a present pathology. It embodies also the idea of medicine applied i n the service o f societas, or to the community of men, with a view to lowering,the i n c i d ence of a l l preventable disease, and r a i s i n g the general l e v e l of human f i t n e s s . "  L, This i s a quotation from an address given by Professor Ryle of Exford U n i v e r s i t y on the s o c i a l aspects of medicine, which the writer came across i n a pamphlet, which has since been l o s t , .  117 Recommendations Regarding Medical S o c i a l Work The r o l e o f the medical s o c i a l worker i n combating tuberculosis i s a v i t a l one.  She i s the medium through which the t o t a l i t y of services a v a i l a b l e  to the patient are i n d i v i d u a l i z e d to meet h i s p a r t i c u l a r needs. associates i n the public and p r i v a t e welfare agencies,  Through her  the patient and h i s  family are helped with other s o c i a l d i f f i c u l t i e s . I t i s recommended that a l l tuberculous patients be referred to the - medical s o c i a l worker as soon as possible a f t e r diagnosis.  Ho matter how  stable  the i n d i v i d u a l , tuberculosis involves such major adjustments i n l i v i n g f o r the patient and h i s family, that there must be few indeed who  would not benefit at  least supportively from the services of the medical s o c i a l worker. i n d i v i d u a l patient or family may  Though an  not be able to u t i l i z e a casework r e l a t i o n s h i p  constructively, the s o c i a l h i s t o r y information which the medical s o c i a l worker obtains during her contact with the patient and h i s family i s of great diagnostic and therapeutic value.  Indeed the findings of the " s o c i a l laboratory" are just  as important as the findings of the chemistry laboratory i n the treatment of tuberculosis. I t i s recommended that at least one member of the s o c i a l service s t a f f i n tuberculosis hospitals be a q u a l i f i e d group worker, so that there can be experimentation i n the value o f group therapy f o r tuberculous patients. has already proved successful i n other chronic i l l n e s s e s .  One  This  t o o l which has  been p a r t i c u l a r l y e f f e c t i v e i n r e h a b i l i t a t i o n work has been the use of psychodrama, i n which patients enact dramatically, either impromptu or from prepared s c r i p t s , situations they are l i k e l y to encounter on leaving h o s p i t a l , within t h e i r f a m i l i e s , i n seeking employment, and i n s o c i a l r e l a t i o n s i n general. discussion afterwards,  Group  guided by the worker, has been of proved therapeutic  value to many patients i n helping them to face the r e a l i t i e s of such s i t u a t i o n s . and t h e i r f e e l i n g s about them.  118 I t i s also recommended that i n order to enable the medical s o c i a l worker to function f u l l y i n a medical setting, namely, to p a r t i c i p a t e i n the treatment process, and not merely to gather s o c i a l h i s t o r y information and to help with environmental problems —  there should be regular consultation with  p s y c h i a t r i c s t a f f regarding d i f f i c u l t cases.  The medical s o c i a l worker would  then be able to help more e f f e c t i v e l y those seriously disturbed patients where her r o l e i n the treatment team though d i s t i n c t from the p s y c h i a t r i s t ' s cannot be performed except i n collaboration with him. I t i s also recommended that experimentation be undertaken with p r o grams f o r the extension of medical s o c i a l services into the home.  There has  been some i n t e r e s t i n g pioneer work i n t h i s f i e l d i n U.S.A., e s p e c i a l l y at  1 Montefiore H o s p i t a l i n New York.  There i s great need f o r improvement i n methods  whereby medical care programs are adapted to the medical needs of people,in our present-day society* P r o v i s i o n f o r medical s o c i a l work research i s also recommended. f i e l d of teleology has been very much neglected by medical s o c i a l workers.  The They  can make a s i g n i f i c a n t contribution to medical care when they can answer more scientifically  than at present, not only the question?,  "Why  d i d this person  become i l l when he did?", but also the equally important questions:  "Why d i d  he get better when he did, and what were the mechanisms concerned i n h i s recovery"? I t i s f u l l y r e a l i z e d that the implementation o f these recommendations regarding medical s o c i a l work w i l l be c o s t l y .  I n d i v i d u a l i z a t i o n of services i s  always c o s t l y , but l e s s c o s t l y than non-individualization* 1. See F i e l d , Minna and Schless, Bessie, "Extension of Medical S o c i a l Service into the Home", i n the Journal of S o c i a l Case work V o l . XXIX No. 3., March, 1948, p. 94  119 Recommendations regarding S o c i a l Assistance  Regulations  Success of tuberculosis control from the s o c i a l point of view depends i n large measure on adequate p u b l i c welfare programs. the s o c i a l assistance program. f i c u l t to define.  Of prime importance i s  What constitutes adequate assistance i s d i f -  Experience has shown that attempts to do so without regard  to a family's e x i s t i n g standards of l i v i n g are l i k e l y to be unsuccessful.  It  i s important i n dealing with the tuberculous group to help the family maintain some semblance of the standards to which they, were accustomed before the struck.  disease  The s p e c i a l concessions allowed to tuberculous patients under the •  B r i t i s h Columbia Social Assistance Act represent an attempt to do t h i s , but to jadge from the experiences of the people i n the - sample group, they f a l l erably short of t h e i r intended aim.  consid-  They w i l l continue to do so, i n the opinion  of the writer, u n t i l we broaden the concept of p u b l i c assistance to include a s l i d i n g scale of a d d i t i o n a l f i n a n c i a l and s o c i a l p r i v i l e g e s above bare sub-? sistence l e v e l , which w i l l be available for individuals and families according to their s p e c i f i c need. I t i s also recommended that there be further extension of s o c i a l assistance i n the form of boarding homes for convalescent  patients.  Experience  elsewhere has shown that the cottage type of u n i t , preferably managed by  ex-  tuberculous patients, are the most successful. A. minor r e v i s i o n i n s o c i a l assistance regulations which i s recommended i s payment of t r a v e l l i n g allowances f o r a patient's immediate r e l a t i v e s f o r purposes of v i s i t i n g patients i n tuberculosis i n s t i t u t i o n s , at l e a s t twice a year. I t i s the function of p u b l i c welfare agencies to strengthen clients. " V a l i d p u b l i c welfare services" i t has been a p t l y said "can only be given i n a society and i n an administrative s e t t i n g  their  120 which i s receptive to s o c i a l work aims, "by workers who have the s k i l l s to provide the services that conserve the strengths and develop the capacities of the c i t i z e n group which the agency serves."^ The implications for B r i t i s h Columbia are programs aimed at improving community understanding o f s o c i a l work, and the employment of more f u l l y trained s o e i a l workers i n p u b l i c welfare. Recommendations Regarding B e h a b i l i t a t i o n Services Inauguration of government sponsored r e h a b i l i t a t i o n programs f o r the tuberculous i s recommended.  The weakness of the present r e h a b i l i t a t i o n  services i n B r i t i s h Columbia seem to the writer to v i t i a t e much of of e x i s t i n g medical and  excellence  s o c i a l services i n combating tuberculosis.  There i s need f o r the development of adequate vocational r e t r a i n i n g programs for discharged  sanatorium p a t i e n t s :  an educational program to soften  up employer—employee resistance i n the employment of handicapped people; p r a c t i c a l help i n developing work opportunities and l o c a t i n g suitable employ* ment.  The work of the Special Placements.Branch of National Employment Services  and the B r i t i s h Columbia Tuberculosis Society i s excellent but extremely l i m i t e d i n r e l a t i o n to e x i s t i n g needs.  The task i s too great f o r voluntary agencies  to meet the needs unaided. One  of the greatest obstacles to e f f e c t i v e work i n the r e h a b i l i t a t i o n  f i e l d i s the lack of a u n i v e r s a l l y accepted d e f i n i t i o n of what constitutes l i g h t work.  While both the patient and h i s doctor know very c l e a r l y what i s involved  i n " f u l l time l i g h t work", the same c l a r i t y does not e x i s t on the labour market. Time and again, a patient has undertaken what i s c l a s s i f i e d as l i g h t work on i n d u s t r i a l f i l e s , but which proves i n p r a c t i c e to be too arduous f o r an  ex-  tuberculous p a t i e n t .  1. Brown, Luna Bowdoin "Responsibility of the Public Agency f o r Strengthening Its C l i e n t s " , Journal of S o c i a l Casework. V o l . XXIX No. 7, July, 1948,p.255  121 1  I t i s also recommended that the B r i t i s h system he adopted, whereby  •very employer of twenty or more persons i s required to employ a quota of d i s abled persons, amounting to a t l e a s t three per cent of h i s labour force. under the B r i t i s h plan of "designated  Also,  employment", future, openings i n c e r t a i n  occupations such as car park attendant and elevator operator, may  be  reserved  for disabled people* I t i s also recommended that an adequate sheltered workshop program be developed and subsidized from p u b l i c funds. way  Such projects may range a l l the  from the work colony, where severe tuberculous  chronics can l i v e i n v i l l a g e 1  settlements with their f a m i l i e s , as i n Papworth v i l l a g e i n England, to nonr e s i d e n t i a l workshops where.patients can work from one to s i x hours per  day,  depending on t h e i r capacity* Dr. Myrom C, Weaver, Dean of the U n i v e r s i t y o f B r i t i s h Columbia School  2 of Medicine, recently suggested that ex-tuberculous patients form a s e l f - h e l p group s i m i l a r to Alcoholics Anonymous, to help i n t h e i r own This i s a recommendation well worth implementing*  rehabilitation*  The a r t h r i t l c s of B r i t i s h  Columbia have already formed t h e i r organization, and according to recent r e ports, are f i n d i n g the project w e l l worth while* Recommendations Regarding Subsidization of Work o f Voluntary Agencies Services of voluntary agencies are strained to capacity by the needs created by chronic i l l n e s s .  They cannot answer a l l requests for t h e i r services  unless there i s some public subsidization o f those aspects of t h e i r work which, i n our modern society, are p r i m a r i l y a community r e s p o n s i b i l i t y , rather than 1* I f properly run, there i s l i t t l e danger of spread of i n f e c t i o n i n such p r o j e c t s . In Papworth, England, i n thirty-two years, not one c h i l d born there to tuberculous patients has developed pulmonary tuberculosis. 2. In h i s address at the Annual General Meeting of the Preventorium Society, 1952.  122 that o f a p r i v a t e agency. It i s recommended that the Family Welfare Bureau Homemaker Service "be enlarged through p u b l i c funds, to enable the agency to place and supervize homemakers i n families where the mother i s tuberculous, or s u f f e r i n g from any other chronic incapaciting i l l n e s s . Placement o f a c h i l d outside h i s family because of chronic i l l n e s s should be considered only as a l a s t resort, and should not be dictated by f i n a n c i a l considerations only.  Implementation of the foster day care program  i s recommended to provide day care f o r the children o f working fathers where the mother i s incapacitated, so t h a t , f u l l time placement; o f a c h i l d during the i l l n e s s o f h i s mother, i s avoided except where absolutely necessary. Private agency services to tuberculous people without family attachments should be strengthened.  I t i s s p e c i f i c a l l y recommended that a program  similar to the B r i t i s h "Meals on Wheels"- be adopted.  At present there i s no  p r i v a t e agency which could undertake i t without subsidization from p u b l i c funds. I f such a program were inaugurated,' convalescent tuberculous people l i v i n g alone would have a hot cooked meal brought d a i l y to their homes by mobile canteens for which they would pay according to their means.  This could be the greatest  single measure i n enabling t h i s group to come through t h e i r convalescence successfully. Recommendations. Regarding Primary Basic P u b l i c Welfare Measures Because o f the inter-relatedness o f tuberculosis and major s o c i a l problems, no program o f tuberculosis c o n t r o l i s complete without adequate^ pror . v  v i s i o n i n the national economy f o r those basic p u b l i c welfare measures necessary to meet the primary needs o f human beings i n our society. These include: - a comprehensive  s o c i a l insurance such as that out-  l i n e d by Dr. L. C. Marsh i n h i s report on S o c i a l Security f o r Canada: f u l l  123 employment p o l i c i e s ; a health services scheme which w i l l make medical care a v a i l a b l e to a l l according to need; government subsidization of low r e n t a l 1 housing p r o j e c t s . The p r o v i s i o n of such a comprehensive health and welfare scheme i s held back p r i n c i p a l l y by two obstacleBo such services may  The f i r s t i s expense.  The cost o f  indeed appear p r o h i b i t i v e from the f i s c a l point of view.  However, that depends on whether the long or short term view i s taken.  There  can be no disputing the fact that i t costs the community more, i n the long run, to tolerate tuberculosis than to wipe i t out.  In terms of human unhappiness.  and incapacitation, i t may well be that the present cost to the community i n not providing these services i s a c t u a l l y greater than the cost of providing them. The second great stumbling block i s current philosophy.  It i s s t i l l  a commonly held view that the p r o v i s i o n of adequate s o c i a l security measures would r e s u l t i n the undermining of the moral f i b r e of a population.  Social  workers are often accused of favouring the removal of a l l d i f f i c u l t i e s from people's l i v e s .  But none of us can avoid c o n f l i c t and pain.  that those people who  The tragedy i s  have had i t meted out to them i n overabundant measure  often*become unequal to the undertaking o f mature r e s p o n s i b i l i t i e s i n the adult world.  Freud once said that " i t i s the duty of medicine to make the patient  strong enough to face the i n e v i t a b l e suffering of l i f e " . s o c i a l work and s o c i a l s e c u r i t y .  The same i s true of  I f we are r e a l l y concerned about people, we  w i l l provide the services to enable them to cope with the complexities  of  modern l i v i n g , not as has been said, "as a sentimental move, but as a basic  1. See Report on S o c i a l Security f o r Canada, prepared by Dr. L. C. Marsh for the Advisory Committee on Reconstruction, Ottawa, King's P r i n t e r , 1943  124  1 need for personal s t a b i l i t y and s o c i a l order". According to the Human Eights Charter of the United Nations* "Everyone has the r i g h t to a decent l i v i n g ; to work and advance h i s well-beingj to health, education and s o c i a l security.• • There s h a l l be equal opportunity f o r a l l to p a r t i c i p a t e i n the economic and c u l t u r a l l i f e of the community". We have not yet implemented t h i s i n our culture.  The l i f e h i s t o r i e s o f the  people described i n t h i s study are ample proof of t h i s .  Most o f them ask noth-  ing more than the very thing the charter describes. I t may he, as F. D. Eoosevelt said, that the twentieth century w i l l come to be dubbed h i s t o r i c a l l y as the "century o f the common man", because o f the improvement i n h i s l o t which i t has witnessed.  I t i s equally p o s s i b l e  that p o s t e r i t y w i l l judge our century by our t r a g i c omissions i n the f i e l d of human betterment  i n view of the extent of our s c i e n t i f i c enlightenment and  technical achievements.  Such tremendous power w i l l never be used to the ad-  vantage o f mankind as f u l l y as i t might be u n t i l men understand  themselves:-  "The c r i t i c a l , empirical a t t i t u d e o f the natural sciences must now be extended to the study o f personality and to the s o c i a l sciences i n order to achieve the same mastery o f i n d i v i d u a l and s o c i a l behavior which we have acquired over the forces o f inanimate nature".^ I t i s the great challenge and the great p r i v i l e g e of the profession of s o c i a l work to a s s i s t i n t h i s great undertaking. Prevention and c o n t r o l o f tuberculosis i s inescapably linked with the r a i s i n g o f the general l e v e l o f w e l l being o f a l l peoples, t o which the profession of s o c i a l work i s dedicated.  Human experience had already shown  repeatedly that i n dealing with tuberculosis, h a l f way measures w i l l not do.  1. See H i l l , Eeuben, "Are We Expecting Too Much o f Families"? of Social Casework. V o l . .XXXLl No. 4. A p r i l , 195L P» "'±53  Journal  2, Alexander, Franz, "Our Age o f Unreason, a Study o f the I r r a t i o n a l Forces i n S o c i a l L i f e . . J . .33. Lipplncott Go. New York, 1942, p. 22  125 "In order to get a t the roots o f tuberculosis, i t . i s necessary to understand where i t s springs a r i s e . Prom some crater i n the depthB o f society, among the most wretched poverty, misery, unemployment and i n b e c i l i t y , the fountain of tuberculosis i n f e c t i o n i s thrown up through the community, and seizes upon a l l who are susceptible. U n t i l these s o c i a l e v i l s can be got under control, we s h a l l never be quite free o f tuberculosis. U n t i l then, we s h a l l not deserve to be."  1. Olsen, H. C., The Fight against Tuberculosis i n Bernholm. Acta Tuberculosis Scandinavia. Supp., 11, 19^3  126 Appendix A BIBLIOGRAPHY GOVERNMENT PUBLICATIONS Annual Reports o f the D i v i s i o n of Tuberculosis Control, P r o v i n c i a l Board o f Health  King's P r i n t e r  Report on S o c i a l Security f o r Canada, prepared for the Advisory Committee on Reconstruction by Dr. Leonard C. Marsh  King's P r i n t e r Ottawa, 1943  V i c t o r i a , B.C.,1945-1951  BOOKS  Alexander, Franz  Bankoff, M. D.  Chadwick, H.D. and Pope, A.S.  Our Age of Unreason: A Study o f the I r r a t i o n a l Forces i n Social L i f e J . B. Lippincott Co., New York, 1942 Conquest o f Tuberculosis Macdonald and Co., London, 1944 The Modern Attack on Tuberculosis The Commonwealth Fund, New York, 1942  Denning, Dorothy  Home Care of Tuberculosis National Tuberculosis Association, New York, 1943  Dunbar, Flanders  Psychosomatic Diagnosis Harpe Bros., New York, 1943  English, O.S. and Weiss, E. . H a t f i e l d , W. H.  Hodgson, V. H.  Hudson, Holland and Fish, Marjorle  L o v e l l , Robert G.  Marsh, Leonard C.  Psychosomatic Medicine W. B. Saunders Co. Philadelphia, 1943 Handbook on Tuberculosis King's P r i n t e r , V i c t o r i a ,  1944  Handbook on Tuberculosis f o r P u b l i c Health Nurses. National Tuberculosis Association, New York, 1942 Occupational Therapy i n the Treatment o f the Tuberculous Patient. National Tuberc u l o s i s Association, New York, 1944 Taking the Cure; The Patient's Approach to Tuberculosis, Macmillan and Co., New York, 1948 Rebuilding a Neighbourhood: Report on a Demonstration Slum Clearance and Urban R e h a b i l i t a t i o n Project i n a Key Central Area i n Vancouver. The U n i v e r s i t y o f B r i t i s h Columbia, Vancouver, 1950  127  Maxwell, James  The Care of the Tuberculous Patient i n the Home,, Hodder and Staughton, London, 1943  Myers, J, Arthur  Tuberculosis Among Children and Adults Chas. C. Thomas, Springfield, I l l i n o i s , 1938  Pattison, H. A,  Rehabilitation of the Tuberculous Patient The Livingston Press, New York, 1942  Pinner, Max  Pulmonary Taberculosis in the Adult Chas. C... Thomas, Springfield, I l l i n o i s , 1945  Rich, Arnold R.  The Pathogenesis of Tuberculosis Charles C. Thomas, Springfield, I l l i n o i s , 1944  Sapirstein, M. B.  Emotional Security. Crown Publishers, New York, 1948 , . .  Segal, Jacoh  Pulmonary Tuberculosis. Oxford University Press, Oxford, 1939  Smillie, Wilson G.  Public Health Administration, Macmillan Co., New York, 1941  Towle, Charlotte  Common Human Needs. United States Government Printing Office, Washington, 1945  Ustvedt, Hans Jacoh  Pulmonary Tuberculosis and Its Treatment John Bale, London, 1942 ~~°  Wittkower, Erie  A Psychiatrist Looks at Tuberculosis. National Association for the Prevention of Tuberculosis, Loudon, 1949  ARTICLES AND PAMPHLETS Axelrad, B. K.  "Some Aspects of the Treatment of the Emotional Problems of the Tuberculous , Newsletter; American Association of Psychiatric Social Workers, Spring, 1946 Vol. 15., No. 4 11  Bellack, Leopold  "Psychiatric Aspects of Tuberculosis , Journal of Social Casework. Vol. 31» No. 5., May, 1950, p. 183 - 189  Berle, B. B  "Emotional Factors i n Taberculosis; a Critical Review of the Literature", Psychosomatic Medicine. Nov., 1948 p. 366 - 373  e  11  128 Bloom, Sophia  "Community Wide Chest X-ray Survey Part I I I : Social Work", U. S. Public Health Reports.' V o l . 66  Feb. 2nd, 1951.pp. 139 - 156  Bloom, Sophia  "Some Economic and Emotional Problems of the Tuberculosis Patient and His Family", (reprinted from) TJ. S. P u b l i c Health Reports.: A p r i l 2nd, 1948  Bowers, Swithun  "The Nature and D e f i n i t i o n of S o c i a l Casework", Journal o f Social Casework Vol. 30, No. 10 Dec. 1949. p. 4 l ?  Brooks, Mary S.  "Psychology o f the Tuberculous P a t i e n t " Journal of Social Casework, V o l . 29, No. 2. Feb. 1948, p. 57  Brown, Luna Bowdoin  "Responsibility o f the Public Agency for Strengthening i t s Clients", Journal o f Social Casework. V o l . 29, No. 7, July  1948,pp. 255 - 260 Coleman, J.V., Hurst, A l l a n and Horhein, Ruth  "Psychiatric Contributions to the Care o f the Tuberculous", Journal o f the American Medical Association, Vol. 135» No. 11  Nov. 15th, 1947.PP. 699 - 702 Day,  George  "Observations of the Psychology o f the Tuberculous", The Lancet, Nov. 16th, 1946, pp. 703 - 706  Egypt, Ophelia  "Helping a Tuberculous Patient t o Face Surgery", Journal o f Social Casework. Vol. 32, No. 3 . , March, 1951, pp. 119 - 125  F i e l d , Minna and Schless, Bessie  "Extension of Medical Social Services into the Home", Journal o f Social Casework. Vol. 29, No. 3., March, 1948, pp. 94 - 99  F i e l d , Minna  "Family Sessions; a New Cooperative Step i n a Medical Setting", Journal of S o c i a l Casework. V o l . 3 0 . , No. 10. Dec. 1949, p. 417  Forster, A> M. and Shepard, C. E.  "Abnormal Mental States i n Tuberculosis" American Review of Tuberculosis, Vol. 25 No. 324, 1932, pp. 324 - 333  Frost, W. H  "Age Selection o f M o r t a l i t y from Tuberculosis i n Successive Decades", American Journal of Hygiene. Sect. A:30 91-96 Nov., 1939  0  Frost, W. H.  "How Much Control o f Tuberculosis", American Journal o f Public Health. V o l . 27.1, 1937  129 Govan, Elizabeth  "Public Assistance i n Modern Society", Canadian Welfare. Vol. 28, No. 1, May 1952, pp. 5 - 8  Harper, F. B.  "Surgical Treatment of Tuberculosis", Hospital Progress. Vol. 30, No. 5, May 1949, p. 146  Hartz, Jerome  "Human Relationships i n Tuberculosis", U. S. Public Health Reports. 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