Biting off the Bracelet: A Study of Children in Hospitals [Reprint 2016 ed.] 9781512814385

Table of contents :
Contents
Acknowledgments
Introduction
one.The role of person-in-a-total-institution
two. Socialization for patienting
three. Coping i: the children
four. Coping ii: the staff
five. Social and sociological implications
six. Some proposed changes
Notes
Bibliography
Index

Citation preview

Biting off the

bracelet

University

of Pennsylvania

Press

• 1979

Ann Hill Beuf

Biting off the bracelet A study of children in hospitals

Copyright

1979

All rights

reserved

by Ann

Printed

in the United

Library

of Congress

Beuf.

Ann

H

States

Bibliography:

p

Children

Hospitalized.

— Hospital aspects. WS10S

RJ242B47 ISBN

in Publication

Data

index

Hospitals—Sociological Sociological

America

1938 bracelet.

1

Beuf

of

Cataloging

Biting off the

Includes

HiII

0-8122-7766

362

care

2

aspects

Children3

1. Title [DNLM: .5 H7 7'8'U X

Hospitals 1.

B566b] 79

—

Child.

13411

In memory outspoken

of Sol

Worth,

critic and loyal friend

Contents

Acknowledgments Introduction one

The role of person-in-a-total-institution two

Socialization for patienting

three

Coping i: the children

four five

Coping ii: the staff

Social and sociological implications six

ix 1 11 25 65 83 111

Some proposed changes

123

Notes

147

Bibliography

153

Index

161

Acknowledgments

Many people have made it possible for me to complete this work. 1 am particularly grateful to the children who let me into their worlds at times when they had many problems and who taught me so much. The hospital administrators and personnel were of tremendous assistance, and some of them provided me with valuable insights into the realities of hospital life. I would like to thank Renée C. Fox and Arlene Daniels for their thorough and helpful readings of the manuscript and the faculty of the Annenberg School of Communications at the University of Pennsylvania, who gave me the opportunity to test my ideas against a tough audience. I am especially grateful to M a r t h a Pollack, who typed the manuscript with care and interest, and to Robert Erwin of the University of Pennsylvania Press for his interest and encouragement. Nancy Post's help in tracking down references was invaluable. I am also deeply t h a n k f u l for the opportunity to have known several physician-friends: Chek Beuf, A n n a Marie Chirico, Luther Brady, and Ernest Rosato. They have demonstrated on a daily basis that clinical excellence and humanistic concern for the patient are not mutually exclusive. ix

introduction

T h i s is a b o o k a b o u t the social s i t u a t i o n of t h e hospitalized child in t w e n t i e t h - c e n t u r y A m e r i c a . It c o n t e n d s t h a t t h e c h i l d r e n ' s h o s p i t a l h a s m a n y of t h e c h a r a c t e r istics of d e p e r s o n a l i z a t i o n a n d e n f o r c e d helplessness t h a t a r e a s s o c i a t e d with o t h e r " t o t a l i n s t i t u t i o n s " in o u r society. It also e x a m i n e s t h e i n t e r p e r s o n a l a p p r o a c h e s emp l o y e d by s t a f f a n d p a t i e n t s in d e a l i n g with t h e t e n s i o n s c r e a t e d by t h e reality of t h e total i n s t i t u t i o n o n the o n e h a n d , a n d t h e m o r e idealistic goals of t h e c h i l d r e n ' s hospital on the other. Finally, s o m e m e a s u r e s a r e suggested t h a t m i g h t imp r o v e this s i t u a t i o n . T h i s b o o k also h a s s o m e t h i n g t o say a b o u t p e o p l e of all ages in h o s p i t a l s , f o r m u c h of w h a t I h a v e o b s e r v e d in t h e c h i l d r e n ' s h o s p i t a l h a p p e n s t o a d u l t p a t i e n t s as well. T h e r e a s o n f o r stressing t h e c h i l d r e n ' s s i t u a t i o n is t w o f o l d . First, c h i l d h o o d is the t i m e w h e n i m p o r t a n t e l e m e n t s of self-esteem a r e e s t a b l i s h e d in p e r s o n a l i t y . N u m e r o u s s t u d i e s a s s o c i a t e a s t r o n g sense of self-esteem with the c h i l d ' s feeling of c o n t r o l over his o r her env i r o n m e n t . T h e i n c u l c a t i o n of a sense of e n f o r c e d

1

2 Introduction

helplessness may thus have more damaging results in a child than in an adult. Second, adult patients are beginning to act as their own advocates through the healthcare consumer movement and to seek changes in the system of adult health-care delivery. Children, on the other hand, because of their generally low status in this society, need advocates, adults who will tell their story and lobby for changes in the institutions that minister to children. Ultimately, one would hope, children themselves will have some voice in determining the policies that affect them. The book is critical of the manner in which children are treated in hospitals. This should not be interpreted as an attack on hospitals or the dedicated people who staff them. It is an attempt to reveal the contradictions between the institutional goals and the caring goals of hospitals and to suggest that, so far, we have avoided facing those contradictions. It is an underlying assumption of the book that the treatment of the child in the hospital is, in part, a crystallization of the way American children are treated in general. The American definition of " c h i l d " is a social construct that has emerged f r o m our historical and sociological experience. The shifting nature of childhood can be viewed as the result of the sweeping economic and social changes in Western European society associated with the Industrial Revolution. Although the child in preindustrial Europe was an active and contributing member of society, this situation began to change in early modern times. 1 According to Philippe Aries, the French family historian, prior to modern industrial time, children

3 younger t h a n six were s o m e w h a t ignored by their parents. Few special characteristics were a t t r i b u t e d t o t h e m — n o o n e spent time p o n d e r i n g their special needs, such as special clothes or toys. T h e child over six was viewed as a small a d u l t . P o r t r a i t s of this period show children with adult p r o p o r t i o n s , r a t h e r t h a n the largeh e a d e d , small-bodied c o n f i g u r a t i o n we t o d a y recognize as " c h i l d l i k e . " Children were attired like adults, miniature replicas of their parents. 2 Children did not engage in special " c h i l d r e n ' s activities," b u t joined a d u l t s in their work a n d their recreation. Louis X I V played the violin at f o u r a n d also engaged in the h u n t with his f a t h e r . ' M o z a r t c o m p o s e d m a j o r w o r k s b e f o r e he was ten. Pages began their passage to the role of knight at six, a n d p e a s a n t children were in the fields a n d the kitchens helping their families. Because of their i m p o r t a n t roles in agriculture a n d crafts, they were viewed as e c o n o m i c assets. Children held their o w n as kings, bishops, a n d generals. M a n y children n o t yet in their teens e m b a r k e d o n their o w n to fight in the H o l y L a n d o n the C h i l d r e n ' s C r u s a d e . C h i l d h o o d was, t h e n , quite s h o r t , lasting a b o u t six years. By six, family, c h u r c h , a n d e c o n o m y welcomed the child to full p a r t i c i p a t i o n in their workings. T h e r e is little evidence of a detailed theory of child d e v e l o p m e n t ; it was u n d e r s t o o d simply that a f t e r the age of six, the child's capability was m u c h greater." Certainly n o detailed Piagetian stages of cognitive d e v e l o p m e n t existed, nor were there theories of psychosocial g r o w t h c o m p a r a b l e t o those of F r e u d a n d E r i k s o n . T h e times may well have been hard f o r children. A d u l t s did not give t h e m the special t r e a t m e n t a n d

4 Introduction

tolerance that we have come to associate with agespecific needs, but the times also granted a humanity and self-determination to children over six that our society denies them. By treating these citizens as competent people, capable of making their own decisions on many matters, it was possible to communicate to them a sense of themselves as free and effective human beings/ The first major effect of industrialization on the family was the separation of familial and economic roles. An industrial economy involves a central workplace to which the employee travels to earn money (thus eliminating exchange and barter as forms of economic dealing). Home, on the other hand, becomes the place to which the worker returns for rest, companionship, and emotional satisfaction. As the bureaucratization and depersonalization of labor increase, home becomes the one arena in which the worker can exert authority over others. Dealt with as but one of many on the job, the male worker (and historically it has been most frequently the father who has gone out to work) sees his family as the sole island of emotional viability in his life. This places a heavy set of obligations on women and children, who must attempt to fulfill the father's expectations and who are called upon to play the role of lackey or slave to his kaiser or boss. Powerlessness on the part of adults becomes a source of dissatisfaction, which is remedied by feelings of power over one's children; children come to be viewed as very powerless, thus feeding the emotional needs of the adults. Industrialization and urbanization also caused the important economic roles formerly played by women and children to shrink. No longer producers, they became

5 consumers. Purchasing replaced raising crops, killing animals, spinning, and sewing. Machines made the remaining household chores easier. The value of the work that children had performed in their homes declined. Until the late nineteenth century, some children maintained relatively high status in their families by working at jobs outside the home. However, the physical and psychological consequences of child labor were harsh, and preventive legislation ended this practice. From that point on, the child, once viewed as a blessed economic asset in the European agricultural family system, became a consumer—an economic liability. Concurrently, the active and productive economic roles that women had traditionally performed within their homes began to disappear. By the end of the nineteenth century, women's roles had been redefined primarily in terms of the " m o t h e r " aspect of the wifely role. One might argue that the "discovery of childhood" was important in creating a new set of concerns and tasks for these women that would keep them within the confines of traditional sex-role structures. As Aries notes, in the seventeenth and certainly the eighteenth centuries, the concept of childhood as a separate, dependent stage in the life cycle began to take shape. Special dress was assigned to children; the art of the time began to depict them as "childlike" in proportion and coloring; toys made their appearance in France; and schools, formerly organized around ability, became age-graded. 6 The notion of the special physical and emotional needs of the child began to take root. During the Renaissance, there had been some stirrings in this area. In 1472 Paulo Bagellardo published his Little Book on Diseases of Children, the first known

6 Introduction

written statement that childhood disease was not simply adult disease in miniature. In 1512 Eucharius Roslin's Rosegarten appeared. But it was not until the nineteenth century that pediatrics was taught as a separate discipline in the medical schools. The first children's hospital in the English-speaking world, the Great Ormond Street Hospital for Children, opened its doors at this time. The first American children's hospital, in Philadelphia, was opened in 1855, and the first pediatric clinic was established in New York City in 1862. The recognition of pediatrics as a medical specialty is indicative of the new notion of childhood. Shortly thereafter, the child's psychological state began to receive attention. The works of Freud, Cooley, and George Herbert Mead gave rise to a child psychology that has gained in acceptance and popularity up to the present time. A hallmark of pediatrics and of child psychology was the developmental perspective: the child is seen as progressing in definite cognitive and psychological steps from the amorphous incompetence of the infant to the competence of the adult, the socialized role-player. For our interests, the main point is that these theories have moved up the stage in the life cycle at which the child is considered capable and competent by a considerable number of years. Rigid acceptance of this notion has led us to dismiss as ludicrous the notion of a ten-year-old accountant or a six-year-old carpenter. We have set up an entire set of segregated institutions that we deem " a p p r o p r i a t e " and protective of the child. Children attend schools only with agemates; the games they are to play have the proper ages written on the box. (No one teaches children to

7

play bridge, because it is believed they are not capable of u n d e r s t a n d i n g the rules.) There is children's music, c h i l d r e n ' s theater, a n d a total " y o u t h c u l t u r e . " Because of the developmental tenets accepted by most of o u r society, the child, seen as an intellectual incompetent, is deemed incapable of m a k i n g decisions or taking actions that would have an influence on his or her life.* Children, f o r example, are not represented in the c u s t o d y decisions that a f f e c t them more than any of the other parties involved, have n o say in the allocation of e d u c a t i o n a l f u n d s , and cannot give or refuse permission for medical t r e a t m e n t . This is because our science (which is, in the final analysis, a social product) declares the child incapable of m a k i n g such decisions.' Yet the children of preindustrial E u r o p e m a d e many i m p o r t a n t choices on a routine basis. T h e coming together in the crucible of a rapidly changing society of the privatization of the family, the lack of viable roles for children in the e c o n o m y , the psychological needs of adults for control over someone, a n d the discoveries in the physiological a n d psychological sciences has p r o d u c e d the concept of the d e p e n d e n t a n d incapable child. American society, wed to a strong developmental model of childhood, emphasizes (and thus creates) the helplessness a n d inc o m p e t e n c e of the child. 8 It values the child little in his or her o w n right, because this is a society that determines worth according to position in the occupational structure, a n d we deny children a place in that structure. • P u b l i c - h e a l t h o f f i c e r s o n the S i o u x Indian reservation were " h o r r i f i e d " w h e n S i o u x m o t h e r s left to the children the c h o i c e o f w h e t h e r t h e y were to b e hospitalized or not.

8 Introduction

We see children primarily people, and our laws and this view. Hospitalization attitudes toward the child, view of them.

as the possessions of other our culture tend to support exaggerates these American and thus permits us a clearer

The study The observations that underlie this book were carried out by participant observation in two hospitals. In " C o u n t y Hospital," where observations were carried out in 1971 and 1972, the researcher also acted as a visitor to ill children. At " M e t r o p o l i s , " observations were carried out in the admissions area, the waiting rooms, and on the floors, where the researcher acted as a worker with the play-therapists and as a visitor. Extensive notes were made at the end of each day, and where it was unobtrusive (as in meetings or in the lobbies), ongoing fieldnotes were maintained. This material is occasionally reinforced by notes taken in other hospital settings. It is important to caution the reader that this work, like all such efforts, is not totally unbiased. Even the act of selecting a subject for study represents a bias. It says that this subject is worth learning about rather than something else, and it directs the reader's attention to this particular set of observations rather than to others in the vast realm of potential observations. Observations such as mine, relying on the selection of some data from all the data accumulated, function to raise issues and suggest hypotheses to be tested by more

9

q u a n t i t a t i v e l y o r i e n t e d social scientists. M y i n t e n t i o n is t o raise i m p o r t a n t i s s u e s — n o t t o p u t t h e m t o rest. 9 A s o n e i n v o l v e d in c h i l d r e n ' s l i b e r a t i o n , as a n o p p o n e n t of t h e r o u t i n i z a t i o n a n d e m o t i o n a l sterility of A m e r i c a n m e d i c i n e , a n d as o n e w h o has been t h e m o t h e r of ill c h i l d r e n , I h a v e b e e n i n f l u e n c e d by ideas a n d e v e n t s t h a t give this essay the critical a n d o u t r a g e d t o n e t h a t it h a s at times. I w a n t r e a d e r s t o b e a w a r e of this. B u t 1 d o n o t w a n t you t o t h i n k f o r a m o m e n t t h a t I w o u l d w a n t it t o be o t h e r w i s e .

one The role of person-in-atotaUinstitution

After surgery, to When

let him complain

he comes

if he

wants

back to his room,

don't

insist that he be a "good his feelings

of

boy."

Let him air

annoyance. B

Clark.

Going to the Hospital

In sum, doctors

and nurses

expect to carry

out their work by well-established with a minimum

of interruption

routines, from

tients. Those patients who make no at all. who do not interrupt the of medical sidered

routines,

smoothness

are likely to be

g o o d patients

by medical

Judith

Lorber

"Good

Patients

and

Patients:

Conformity

Deviance

in a General

pa-

trouble con-

staff. Problem and Hospital"

Children u n d e r f o u r t e e n m a d e u p a b o u t 27 percent of the total U . S . p o p u l a t i o n in 1970. Of these a b o u t 5 percent (or f i f t y - o n e of every t h o u s a n d ) were ill e n o u g h during the c o u r s e of the year to stay in a hospital o n e night or longer. This m e a n s that a b o u t thirty-seven t h o u s a n d children a year spend s o m e time in hospitals. Males are m o r e likely to be hospitalized t h a n are females.' T h e ailments that bring children to hospitals vary with the age of the child. I n f a n t s are particularly vulnerable to infectious a n d respiratory diseases, while older children are hospitalized f o r n e o p l a s m s . C h i l d r e n of all ages are m o s t likely t o be in serious difficulty bccausc of accidents, which also rank as the highest cause of child death in the United States. 2

The

"sick"

role

Over twenty years a g o , the sociologist Talcott P a r s o n s developed his n o t i o n of the " s i c k r o l e " a n d the role expectations that are associated with it. 3 This m o d e l is so 13

14 The role of

person-in-a-total-institution

well known that it will be simply outlined here. The sick role, Parsons believed, consists of special exemptions and obligations. These are: 1. Exemption from blame for the " s i c k " condition 2. Exemption from other roles—such as that of student or worker 3. The obligation to try to get better 4. The obligation to cooperate in the therapeutic process. 4 This work served as a catalyst in producing increased study of the sick role and of those who occupy it. It also tended to focus all medical sociology on the sick role instead of on institutions. As Segall has noted, many studies adhered so rigidly to the Parsonsian model that they ignored important variations in the role itself. 5 Many other researchers have developed critiques and expansions of the model. Prominent among these have been critiques of the inability of Parsons' model to deal with different types of illness, and its failure to examine subcultural groups' definitions of the sick role or to examine thoroughly the situation of the terminally ill person, who, because there is no cure for his or her condition, is hardly able to take on the obligation to try to get well. 6 This book is in part a response to Segall's call for new work in this area. Here I shall look at the situation of the hospitalized child and cast my description in terms of an extension of the sick-role concept in two important respects. First, I shall argue that age is an important variable, whose consideration modifies Parsons' model of the sick role significantly; and second, I shall suggest that because the hospitalized child is not only, or

15

not necessarily, sick, but also institutionalized, a n d because the children's hospital is a total institution, we must e x p a n d the notion of the sick role by a d d i n g to it the obligations a n d cultural d e m a n d s inherent in the role of person-in-a-total-institution in order t o arrive at an a d e q u a t e definition of the child-patient role. T h u s , I shall give m o r e attention to institutional factors than does P a r s o n s .

The

patients

B e f o r e proceeding to a discussion of the rights a n d obligations associated with the child-patient role, let me present the limitations I a m imposing on the notion. W h o m exactly are we talking a b o u t in this b o o k ? W h o are the child-patients? T h e y are children w h o c o m e to the hospital, seriously ill e n o u g h to be forced to assume this role but not so sick that the n o r m s associated with it are waived. T h u s , my sample excludes the unconscious child, w h o is simply not in any role, a n d the terminally ill child, f o r w h o m the m o r e o n e r o u s aspects of institutional life are m u t e d , a n d the child in a n acute p a i n f u l crisis, in which case an emergency a m b i a n c e prevails rather t h a n the regimented o n e so characteristic of the h o s p i t a l ' s daily routine. A g e is the o t h e r variable I have t a k e n into consideration. I have excluded i n f a n t s because t h e n o t i o n of a n i n f a n t playing a role seems a bit ludicrous. A l t h o u g h i n f a n t s are certainly engaged in the process of a c c u m u l a t i n g the cognitive a n d social skills that will m a k e f u t u r e role playing possible, they are not yet full role-players in any sense of the word.

16 The

role of

person-in-a-total-institution

Also excluded are those at the other end of the spect r u m — o l d e r adolescents (sixteen to eighteen years old) w h o may be a d m i t t e d t o the children's hospital because they have been u n d e r the care of a given pediatrician f o r s o m e time f o r a c o n d i t i o n a n d wish to c o n t i n u e as that p h y s i c i a n ' s patient. T e r m i n a l illness removes m a n y obligations of the patient role, especially those associated with the e f f o r t to try to get well. T h e terminally ill child is also exempt f r o m much of the r e g i m e n t a t i o n a n d routinization to which other children are s u b j e c t e d . In this case, the m o r e idealistic n o r m s a n d goals of the c h i l d r e n ' s hospital are permitted to f u n c t i o n u n f e t t e r e d , w i t h o u t the c o m p e t i n g n o r m s of efficiency a n d c o n f o r m i t y countervailing against t h e m . W e are, t h e n , focusing on children between the ages of three a n d thirteen w h o are on the regular floors of the hospital, sick e n o u g h t o be in the patient role, a n d yet well e n o u g h to be expected to play it according to the rules the adult c a r e t a k e r s have set o u t . O b s e r v a t i o n s took place u n d e r two sets of circ u m s t a n c e s in t w o places. Half of the observations were carried out in the children's section of a county hospital ( h e r e a f t e r referred to as " C o u n t y " ) in the eastern U n i t e d States. T h e o t h e r observations were carried out in a children's hospital associated with a university medical school ( h e r e a f t e r referred to as " M e t r o p o l i s " ) , also in the eastern United States. Both hospitals are in u r b a n areas, a l t h o u g h the county hospital is located in a working-class white ethnic area of a small city a n d the c h i l d r e n ' s hospital is located in the center of the black a n d P u e r t o Rican section of a metropolis. Both hospitals d r a w a n u r b a n clientele f r o m their immediate

n e i g h b o r h o o d s , but also pull in sizable rural p o p u l a tions, C o u n t y f r o m its outlying a r e a s . Metropolis f r o m rather distant rural communities, it being considered a third-level referral institution—the place where local physicians send patients w h o m they are u n a b l e to diagnose or treat. T h u s we might well see patients at M e t r o p o l i s w h o had previously been in C o u n t y , but whose diagnosis posed a p r o b l e m , or w h o s e c o n d i t i o n did not respond to local therapeutic m e t h o d s .

Age as a factor T h e r e are several factors associated with age that help to s h a p e the child-patient role. C h i l d r e n are developing persons. They are cognitively acquiring a picture of their social world. 7 This picture is sometimes incomplete a n d c o n f u s e d . T h e child's helplessness a n d need f o r affective associations also serve to create a d i f f e r e n t c o n f i g u r a tion of exemption a n d obligation f r o m that which P a r sons attributes to the sick role. Because they have had less e x p o s u r e to i n f o r m a t i o n sources than adults have, children are to a large extent i g n o r a n t of what is going on in the hospital. T h e v o c a b u l a r y is strange. ( " H a v e you d e f e c a t e d t o d a y , s o n ? " " H u h ? " " H a v e you d e f e c a t e d ? " " H e y , m a n , he m e a n did you take a s h i t ! " " O h . Y e h . " ) W h a t will be d o n e to him remains u n k n o w n , even if adults m a k e an e f f o r t to tell him. T h e P a r s o n s i a n model of the sick role assumes that the individual protagonist has voluntarily taken o n this role. H o w e v e r , for the child with a hernia that h a s not yet

18 The

role of person

in

a-total-institution

caused much trouble, or the suspected diabetic whose only symptoms are polydypsia and polyuria,* and who feels perfectly fine, the patient role is something that has been imposed by others without the child's having defined himself or herself as " s i c k " in the first place. The rights and obligations of the child-patient role differ f r o m those of the sick role, for these and other reasons. Let us consider these rights and obligations with the child-patient in mind. 1. The exemption from blame for the sick

condition

While some children are exempt f r o m blame for their conditions, especially children who are chronically ill, many other children are subtly, or in some cases not so subtly, given moral responsibility for their illnesses. Accident victims are front-runners in this regard. " H o w many times have 1 told you not to ride that bike in the street?" or, to another mother, " I can't tell you how much grief he's given me. Ever since he was little, he never did a thing I told him. I told him that that bottle was a no-no, but no, he had to find out for himself." (This refers to a bottle of a cleaning substance that the errant child had consumed.) Children with respiratory problems are admonished for dressing improperly for the weather, for remaining out of doors too long, even for not drinking their orange juice. Those with abdominal problems are berated for their strange eating habits, or their failure to eat, thus through a semantic miracle converting an effect of the disorder into its cause. Even chronically ill children are not totally ' D r i n k i n g a n d u r i n a t i n g a great d e a l .

19

exempt, a n d are lectured that they owe their present hospitalization to failure to observe the :egimen set out for them by p a r e n t s a n d physicians. While all of this need not be d o n e in a harsh m a n n e r , a n d may at times seem p l a y f u l , it nonetheless places the b l a m e on the victim. It seems that a d u l t s in A m e r i c a n society are so acclimated to their f u n c t i o n as socializers a n d c o r r e c t o r s of children that they d o not relinquish this tendency even with regard to the sick role, a l t h o u g h P a r s o n s has set this e x e m p t i o n f o r t h as a key characteristic of the adult sick role.* 2. The exemption from other roles T h e role of the sick p e r s o n as patient usually a s s u m e s centrality in the life of the a f f e c t e d p e r s o n . It eclipses o t h e r roles a n d may o f f e r the person a reprieve f r o m the fulfillment of tasks associated with t h e m . In the case of the hospitalized child, this eclipsing takes place, but not to the extent that it does f o r adults. M o s t child-patients occupy t w o o t h e r significant roles: that of s t u d e n t a n d that of son or d a u g h t e r . A pediatrics t e x t b o o k (Kempe, Silver, a n d O ' B r i e n ' s ) c a u t i o n s against allowing the child to neglect the student role a n d to c o n c e n t r a t e on the patient role. D u r i n g h o s p i t a l i z a t i o n , the child's " l i f e s p a c e " a n d his ties with reality s h o u l d be m a i n t a i n e d . T h e teacher is a familiar n o n m e d i c a l figure, a n d s c h o o l i n g s h o u l d b e available even during brief p e r i o d s o f h o s p i t a l i z a t i o n . ' * T h e e x e m p t i o n o f a d u l t s requires revisiting: recent e m p h a s i s

on

lifestyle as a c a u s e o f d i s e a s e m a y h a v e u n d e r m i n e d it. T h i s issue is d i s c u s s e d in c h a p t e r 5.

20 The

role

of

person-in-a-total-institution

While the demands of the student role may be enf o r c e d or not, depending on a number of important variables (such as the availability of resources, the willingness of individual teachers, and whether or not the attending physician has read K e m p e , Silver, and O ' B r i e n ) , the demands of the child's other role—the filial role—are unremitting and m a y , in f a c t , be accentuated because of the parent's emotional need in this stressful time. Parents w h o are anxious about their child's health place a burden upon that child to act animated and happy because they can then tell themselves that the child seems well. Parents w h o are distressed by the hospital environment and feel guilty f o r letting the child be admitted need signs of happiness and " a d j u s t m e n t " to assuage these guilt feelings. T h e obedience requirements of the filial role remain and are intensified by the tendency of staff to utilize parents as middle-persons in the chain of c o m m a n d : f o r example, the nurse may ask the father to make the child take medicine or stay in bed. Disobedience meets with the same old displeasure or wrath in the hospital as out of it, and it is not unheard of f o r a quite ill child to be s p a n k e d , while in the hospital, f o r being disobedient. T h e a f f e c t i v e demands of the filial role seem to b e c o m e inflated during the child's hospitalization. Parents seem to need the child's a f f e c t i o n and gratitude as a means of allaying their own psychological distress. This is exemplified by what I call " t h e arrival c e r e m o n y . " T h e typical scene here is a trotting, breathless, disheveled parent, rolling his or her eyes to the ceiling and tossing a gift onto the bed in a dispirited manner, all the time complaining about the problems

21

encountered on the way to the hospital, the t r a f f i c , the difficulty in finding a parking space, the long wait for the elevator. T h e child is expected, in this situation, to express (1) happiness at the p a r e n t ' s presence a n d (2) sympathy with the inconveniences the parent has end u r e d . T h e gift must be received with the a p p r o p r i a t e degree of delight a n d gratitude. It is a sad but not unc o m m o n sight to see a b a n d a g e d or feverish youngster consolingly patting or hugging a parent. W h e t h e r this is, in fact, a case of role exaggeration or a case of role reversal is difficult to say. In any event, it represents some role outside the child-patient role that taps the energies of the child a n d violates the n o t i o n that the sick person is automatically spared the fulfillment of other role obligations. 3 and 4. The obligations to try to get well and to cooperate in the therapeutic process T h e child is constantly being urged to try to get well. Children must hold still f o r p a i n f u l procedures, take medicine, follow to the iota the rules a b o u t the a m o u n t of activity in which to engage. They must eat properly, answer all of the d o c t o r ' s questions, neither bite nor d r o p the t h e r m o m e t e r . S o m e mornings, when they are to have blood tests or gastrointestinal X rays, they must f o r g o b r e a k f a s t , a n d must not complain a b o u t it. It is here that we see the d e m a n d s of the patient role most blatantly articulated a n d e n f o r c e d . While many of the d e m a n d s on the child have a rationale in the manifest f u n c t i o n of the hospital—the

22 The

role of

person-in-a-total-institution

helping o f sick children—there is another clustering of demands that arises out of the latent function o f the hospital: the need to function as an efficient, fiscally responsible institution and to regulate the lives o f all within it. This gives the hospital, as we shall see, many qualities of what Erving G o f f m a n has called the " t o t a l institution.'" G o f f m a n sets forth the major characteristics o f total institutions: F i r s t , all a s p e c t s o f l i f e a r e c o n d u c t e d in t h e place a n d under the s a m e single a u t h o r i t y .

same

Second,

e a c h p h a s e o f t h e m e m b e r ' s d a i l y a c t i v i t y is c a r r i e d o n in t h e i m m e d i a t e c o m p a n y o f a l a r g e b a t c h

of

o t h e r s , all o f w h o m a r e t r e a t e d a l i k e a n d r e q u i r e d t o d o t h e s a m e t h i n g s t o g e t h e r . T h i r d , all p h a s e s o f t h e d a y ' s activities are tightly scheduled, with one activity l e a d i n g at a p r e a r r a n g e d t i m e i n t o the n e x t , t h e whole

sequence

of

activities

being

imposed

from

a b o v e by a system o f explicit f o r m a l rulings a n d a b o d y o f o f f i c i a l s . Finally, the v a r i o u s e n f o r c e d activities a r e b r o u g h t

together

into a single

rational

plan purportedly designed to fulfill the o f f i c i a l a i m s o f the institution.10

Certainly we must acknowledge that one could not use this as a full descriptive treatment of the hospital. There is, in some hospitals, a good deal of individualistic attention paid to children. The staff do not take the entire floor downstairs to have tonsils out at the same time, but they do indeed have a "tonsil day, " when all the children scheduled for tonsillectomies go through the procedure, if not en masse, then at staggered intervals throughout the day. Meals, playtime, sleeping, and

23 waking are other aspects of life that the children experience in bulk. In this context, o n e must learn to take on a " s e l f ' that f u n c t i o n s according to the rules of the institution, a nonassertive, compliant, and nonindividualistic self. This self is playing the role of personin-an-institution. T h e d e m a n d s of this role must be a d d e d to the exemptions a n d obligations of the Parsonsian sick role to constitute the role of the child-patient. H o w are children brought to play this role? It is obviously not one they would be expected to take to instinctively. W e should expect a socialization process of some sort to be involved, a n d , indeed, one is. This process involves training prior to hospitalization, and training within the hospital itself. It involves direct teaching and unconscious c o m m u n i c a t i o n s — b o t h verbal and n o n v e r b a l . As we shall see, much of what passes f o r socialization to the patient role at best prepares the child f o r only one or two facets of what we have shown to be a m a n y - f a c e t e d role and at worst is inauthentic, a duping of the child, c o m m u n i c a t i n g an entirely false notion of what is entailed in the role of patient.

two

Socialization for patienting

25

The handling

of many human

bureaucratic

organization

of

people — whether

necessary organization

or

or

effective

needs by the

of whole not

blocks

this

means

of

in the circumstances

is

a

social

— is the

key fact of total institutions. Eruing

Goffman

Asylums

Child: N.A.:

Nurse, Nurse, come here. (Keeps on walking down the hall.)

Child: N.A.: Child: N.A.: Child: N.A.

Hey. Nurse, I'm calling you! Who re you talking to? You. I'm not a nurse. You got a nurse's dress on. I want my orange juice. This ain't no nurse's dress. This a

Child: N.A.:

aide's dress. What's the difference? We do different stuff. She

give you medicine. I can't. Child: Can you get me my orange N.A.: Go ask the candy striper. Child: What's a candy striper? And so on.

can juice?

From the fieldnotes February 1976

Outside Parents

sources and

peers

Parents' instruction with regard to the patient role is of great importance, although its measurement lies outside the scope of this research. It is, however, generally acknowledged that the family, depending on social class, kinship structuring, and ethnicity (to n a m e but a few factors), provides some kind of instruction on the patient role. T h r o u g h past treatment in the sick role at home, the child acquires a notion of the rights and obligations of the patient role. P a r e n t s may vary in the degree of leniency with which they e n f o r c e these roleassociated obligations, and the individual family may vary in some respects f r o m the hospital. For example, many ill children are permitted to run a r o u n d their homes in p a j a m a s , the wearing of this definitive g a r b a n d their absence f r o m school being the main testimonies to sick status, while the hospital may a d h e r e to a strict bed-rest policy. While mothers may give u p o n annoying procedures rather t h a n incite the wrath of the 27

28 Socialization

for

patienting

child, nurses, w h o have d e f i n i t e role-associated tasks to p e r f o r m , will persevere, regardless of the child's response. T h e r e f o r e , while past experience with the sick role may p r e p a r e the child f o r the role of person-in-thehospital, it d o e s n o t d o so in all respects. W e get a hint of the type of p a r e n t a l counseling that h a s g o n e o n at h o m e by e a v e s d r o p p i n g o n conversations t h a t take place in the waiting r o o m a d j o i n i n g the admissions o f f i c e . These one-liners have to d o primarily with the obligation t o try t o get well, to c o o p e r a t e in treatm e n t (or diagnosis), a n d to a d h e r e to the n o r m s of the institution. " D o w h a t they tell you, o k a y ? " " D o n ' t act wild in h e r e ! " " B e sure a n d say ' T h a n k y o u ' to the nurses when they get you s o m e t h i n g . " " T h a t b a r i u m s t u f f tastes kind of y u k k y , but you drink it d o w n a n d d o n ' t m a k e n o f a c e s . " T h e s e edicts articulate scattered n o r m s associated with the child-patient role, but c a n n o t convey the total concept of this role to the child. W e can also a s s u m e that the child has o b t a i n e d some w o r d - o f - m o u t h i n f o r m a t i o n o n hospitals, f r o m peers, f r o m o v e r h e a r i n g adult c o n v e r s a t i o n s , a n d f r o m exp o s u r e t o the m e d i a . Peers have a t e n d e n c y t o embellish their experiences in the retelling. T h i s c a n be either a positive or a negative e l a b o r a t i o n of the facts. For example, d u r i n g my research in nursery schools, 1 heard two children variously describe their hernia o p e r a t i o n s : the first as a field day full of "giggly g a s , " special f o o d s , a n d nice nurses, a n d the second as " w h e n they took a big k n i f e a n d cutted me o p e n a n d I y e l l e d . " Neither of these profiles of the experience is totally accurate. Peers d o , however, p r o b a b l y p r o v i d e o n e of the better sources o n the social relations of hospital life. It is f r o m peers

29 that the child learns that nurses get mad and scream at you for disobeying the rules, or that interns will sit on people who will not stay still for blood tests. The reality of the nature of hospital food, the starkness of decor, and the "scariness" of noises at night are also topics of classroom conversation, and these conversations provide some relatively accurate data with which the child can work. At the younger ages, the acting out of the hospitalization experience provides cognitive information as well as the psychological catharsis so often spoken of in circles of "children's professionals." Books Many books that are designed to ease children's fears concerning illness have been published dealing specifically with hospitals. These books are based on psychological assumptions that have to do with deeplying anxieties and fears in the child regarding illness, mutilation, and separation from the mother. They have little or nothing to say about anxiety generated by the hospital structure or the patient role itself.* 1 have randomly selected books from the children's section of a public library and a children's book store. First, let us look at the degree to which the books convey an image of the exemptions associated with the patient role— f r o m the responsibility for the sick condition, and from other role obligations. * l t is unclear w h e t h e r this is an A m e r i c a n p h e n o m e n o n , as the o n e b o o k e x a m i n e d that w a s translated f r o m a S w i s s e d i t i o n did

include

r e f e r e n c e s to the small p a t i e n t ' s c o n c e r n with her o w n h e l p l e s s n e s s , to the s t r a n g e n e s s o f sharing a r o o m w i t h f o u r o t h e r c h i l d r e n , a n d t o b o r e d o m with institutional f o o d .

30 Socialization

for

patienting

The protagonists in the books are exempt from blame for their illnesses, but this is mainly due to the emphasis on surgery in all the books. While b o o k s dealt with hernia surgery, appendectomy, tonsillectomy, eye surgery, and so forth, n o book concerned a child hospitalized for a diagnostic workup or for an injury. In several books where the patient's wardmates are described, however, blame is attributed to them for their present circumstances. In one book a child has a broken limb, suffered while playing " t o o wildly." Another fell from his bike. So it is tramsmitted, however obliquely, that some children are responsible for their own conditions. However, most are exempt and, in general, the recipients of great concern and pity.* • T h e interaction of reading material and family response should be the object of social science research. W i t h i n the c o n f i n e s of this study, it was not possible to examine this relationship. H o w e v e r , we must hypothesize that reading b o o k s that r o m a n t i c i z e the sick child a n d see him or her as the center of great concern will have d i f f e r e n t effects on children whose families have ignored an illness until it reached near fatal extremes, w h o d o not receive visits while in the hospital, a n d w h o s e parents tell t h e m it is their own f a u l t , t h a n the same reading might have u p o n the child w h o s e family m o r e closely a p p r o x i m a t e s the h a p p y n o r m depicted in the b o o k s . In reading s o m e sugary tale of family togetherness a n d a d v e n t u r e to children in the hospital, I o f t e n noticed pensive expressions o n the faces of the children whose families had shown little interest in t h e m . It was almost as if e x p o s u r e t o such material created s u d d e n awareness in them of a reality that they either had accepted unquestioningly or had d e n i e d — t h a t not everyone's p a r e n t s are like their parents. O t h e r p e o p l e ' s p a r e n t s show a f f e c t i o n , c o n c e r n , a n d d e v o t i o n to their children—theirs d o n o t . O n e must ask w h e t h e r it is ethical to employ socializing reading material to instill a romanticized n o t i o n of the sick role (or any role) in children f o r w h o m reality will never reflect that image.

31 W i t h regard t o the e x e m p t i o n f r o m o t h e r roles, m a n y of the c h i l d r e n ' s b o o k s show the child-patient as exempt f r o m the s t u d e n t role. A l t h o u g h real hospital a f t e r n o o n s are characterized by h o r d e s of m o t h e r s hovering over children with little Macmillan w o r k b o o k s , this activity was not s h o w n in o n e b o o k . In the b o o k s , leaving the school is o f t e n the initial clue that the illness is serious a n d will lead t o hospitalization. In this respect, then, the hospital experience is p o r t r a y e d as s o m e w h a t of a holiday f r o m s c h o o l w o r k . T h e b o o k s d o , however, convey accurately the nonexe m p t i o n of the child f r o m the filial role. In all the b o o k s , when the p a r e n t a p p e a r s , the child is s h o w n b e a m i n g f r o m ear to ear a n d displaying a f f e c t i o n . Most illustrations show the child happily hugging the m o t h e r u p o n her arrival at the hospital.* T h u s , the child is being m a d e aware that p r o p e r patient behavior includes a fulfillment of the filial role obligation. It need not be t h o u g h t that the b o o k s are merely reflections of reality rather than its shapers. F o r the reality of the situation is that m a n y children feel t o o drowsy or are t o o interested in a new p l a y m a t e t o a c k n o w l e d g e the p a r e n t s ' arrival in the a p p r o p r i a t e f a s h i o n a n d are r e m i n d e d of their filial roles by displeased p a r e n t s . W i t h regard to the e f f o r t t o get well, the b o o k s emphasize the child's obligation, a n d they d o the same with regard to c o o p e r a t i o n in the t r e a t m e n t p r o c e d u r e s . *Most books show mothers at the hospital. On the first day, they take the child-patients into the waiting room, are there when they regain consciousness after surgery, and visit them. Fathers appear to get them out of the hospital. Thus, editors let the fathers off the hook by associating them with the pleasant aspect of the ordeal.

32 Socialization

for

patienting

Children in the books rather passively undergo blood tests; anyone who has had a blood test in which the technician fails to get a good vein and keeps on trying for five punctures knows that such a process is not completed quickly and that we are not gleefully dancing in the halls afterward. In the books, an unfavorable depiction of the protagonist's companions who are not " g o o d c o o p e r a t o r s " is also used a device for getting across the norms associated with the obligatory aspects of the patient role. The child who screams and "carries o n " during a blood test is portrayed as the object of contempt or ridicule. Where the books really fall down is in preparing the child for the aspect of the patient role that I have been referring to as that of person-in-a-total-institution. Indeed, those characteristics which G o f f m a n attributes to the total institution are totally ignored by the books. The regimentation of hospital life is shown in not one of these little volumes. The impression is conveyed that the hospital is completely oriented to the individual. Physicians and surgeons are depicted as warm, fatherly persons rather than as the efficient but hurried professionals who actually inhabit the hospital. In one book, a doctor is shown sitting in a chair in the patient's room, rocking the patient. In another, the surgeon comes to get the patient, and they walk hand in hand into the popu p operating room. I must state unequivocally that these are sights I have yet to behold in the real hospital world. In several of the books, the child awakens to find a nurse hovering devotedly over the bed. While this might happen (the nurse might have come in to wash the thermometer), it is highly unlikely. O n e must push the little buzzer to get the nurse, and sometimes that takes a long

33

time. This is the source of a g o o d deal of irritation on the part of real hospitalized children. O n o n e occasion a boy b e c a m e so a n g e r e d by the failure of nurses to res p o n d to his buzzer that he threw his urinal into the hall to attract a t t e n t i o n , only n a r r o w l y missing a portly figure passing t h r o u g h . In the b o o k s all staff are friendly a n d kind, while in reality this is not the case. As we shall see, the d e m a n d s of the hospital can p u t pressures o n s t a f f , especially medical students a n d interns, that m a y lead t h e m to behave with a certain callousness t o w a r d their charges. While nurses, a n d supposedly d o c t o r s as well, have been trained in the values associated with the psychological well-being of the children a n d their care, o t h e r staff m e m b e r s , not so well t r a i n e d , regard their j o b s as " j u s t j o b s , " not child-care p r o f e s s i o n s , a n d p e r f o r m t h e m with the d e t a c h e d air a n d o f t e n hostile a f f e c t with which such tasks are c o m m o n l y p e r f o r m e d in this society. T h e b o o k s are i n a c c u r a t e in t w o respects here. First, they d o not p r e p a r e the child f o r the existence of these people at all. H o s p i t a l s are s h o w n as full of d o c t o r s , nurses, a n d an occasional " b l o o d l a d y . " N o o n e is ever s h o w n cleaning the r o o m s , p u s h i n g carts, or installing televisions. Nurses, rather t h a n f o o d w o r k e r s , are s h o w n bringing the child's trays. T h e s t r a t i f i c a t i o n of the personnel is a total m y s t e r y — a n d remains so until the child's first e n c o u n t e r with it in the hospital. T h u s , the hospital is p o p u l a t e d by whole g r o u p s of people of w h o s e existence the child is u n a w a r e until his or her actual incarceration. A n d , in a d d i t i o n , as I have pointed o u t , not all people in the hospital are pleasant a n d cheerf u l to the child at all times, a l t h o u g h the b o o k s would h a v e us believe it is so.

34 Socialization

for

patienting

Of course, one can argue that these books are not designed to please sociologists; rather, they exist to allay psychological stress on the part of the child. One author-physician says at the end of his book that it was published to help the child overcome fears about the hospital, the procedures that will be used, and the exposure to many strangers: " F o r some time now we have realized that all this can be avoided if only children are properly prepared for the possibility of a stay in the hospital.'" This argument has two biases. First, it assumes that the children's anxieties arise out of their own psyches and out of fear of the unknown, rather than out of the interactive processes in which they find themselves. The second bias is the notion that these anxieties—even deep-rooted ones—can be alleviated solely by preparatory exposure to information. I find problems with both of these ideas. There is much evidence that anxieties can be situationally induced. Testimony to this occurs daily in hospital life. Children are every bit as anxious about seeing the nurse who yelled at them the day before as they are about the results of their blood tests. This is the essence that escapes the outsider. The child is under the power of the institutional caretaker. This person can make life happy or sad; this person can inflict pain and humiliation. Under these circumstances, the social relationships that take place within the hospital assume a central importance in the child's emotional life. I certainly do not mean to call into question the existence of deep-lying fears, nor do I doubt the child's concern with health or bodily integrity. I am saying, however, that concern with the immediate social situation is also present.

35 I must also take issue with the idea that prior knowledge is a cure for anxiety. 1 know a great deal about the conditions that prevail in many "old people's h o m e s " in the United States. This knowledge has hardly reduced my anxiety about entering such an establishment. But even if it were possible to decrease anxiety by giving the person an accurate idea of what it will be like in the hospital, these books would not accomplish that goal, as the image they convey of the child-patient role is inauthentic. Television

The child can learn a variety of the aspects of the patient role by watching television. The primary sources of this kind of information are programs with hospital settings, such as Marcus Welby, Emergency, and the like. A number of daytime soap operas are set in hospitals, and, of course, the child is most likely to see these when he or she is at home, sick—quite possibly just prior to hospitalization. On these programs, the patients are usually very ill indeed, often with diseases so rare as to merit only a complicated footnote in the standard medical school text. They are often threatened with the loss of life or limb, as the saying goes, and much drama and intense emotion surround their cases. This is not likely to be the situation in which the children find themselves. The shows, like the books, present a hospital that is much less regimented and much more oriented to the individual patient. Most patients are shown in private rooms, for example. The benevolent Dr. Welby, who devotes his entire services to one patient, poorly exemplifies the real physician with many

36 Socialization

for

patienting

other patients, two offices, and a short daily visit to the hospital. Once a cleaning woman was shown on Medical Center—because she had had a heart attack. Otherwise, the stratified nature of the institution is as vaguely portrayed on television as it is in the books. In fact, it is less adequately portrayed. Because the doctors are also the heroes of the series, they remain gentlemen at all times. The irritation or bossiness that real doctors demonstrate in their daily interaction with nurses and other staff is not shown; and Marcus Welby does not turn red in the face, tremble so that the blood-drawing syringe shakes in his hand, and tell the patient that he or she has "lousy veins." We must also note that hospitals play a role in other types of shows as well. In police programs, victims and wounded police are often taken to the hospital. Many characters die there. This, combined with the serious nature of the illnesses on the medical shows, may create in the child the notion that only mortally ill persons go to the hospital. This can, in turn, be reinforced by hearing about a grandparent or other person who died in the hospital. In addition, it often happens that a character in a comedy series has a baby, breaks a leg (the Fonz), or has some other problem, such as appendicitis (What's Happening?). In these cases, the hospital experience is treated as hilariously amusing. There are many bedpan jokes (a plus, possibly, as no other of the child's information sources mentions this unique hospital appliance), nurse-patient flirtations, and jokes concerning the lack of privacy between roommates. Except for implying that it is all fun and games, the comedies ac-

37 tually d o a better j o b of p o r t r a y i n g the realities of hospital life f r o m the perspective of g r o u p living. T h e routinization, t h e needless rituals such as the f o u r o'clock t e m p e r a t u r e taking, the humiliation inherent in m a n y of the situations in which o n e f i n d s oneself, are all set forth a n d then t u r n e d to h u m o r . U n f o r t u n a t e l y , these shows d o not t a k e the hospital or the patient seriously, so that what the child d o e s learn f r o m t h e m may not be all g o o d . F o r example, children may learn to laugh at people t h r o w i n g u p because it has been presented as h u m o r o u s o n television. Television usually p o r t r a y s patients as t o o ill to play o c c u p a t i o n a l or e d u c a t i o n a l roles. H o w e v e r , familial a n d r o m a n t i c roles are written into the plot. O n e never hears a sick person on television say to her spouse, " L o o k , J o e , I ' m t o o sick to discuss your a f f a i r with M a r g a r e t . C o m e back in a couple of w e e k s . " T h e obligation t o try to get well is m u c h stressed on television, as is the obligation t o c o o p e r a t e in the therapeutic process. Terrible things h a p p e n t o the person w h o disregards the d o c t o r ' s orders. O n m a n y d r a m a t i c shows, spectacular incidents are triggered by s o m e o n e ' s dereliction in this regard. T h e manic refuses to take his lithium and causes a r a m p a g e at a rock concert. A hitchhiker disregards the pleas of d o c t o r s to r e p o r t to t h e m a n d starts an epidemic of b u b o n i c plague. A diabetic does not take her medicine a n d collapses in the street. But, as in the c h i l d r e n ' s b o o k s , the realities of institutional life are n o t o f t e n p o r t r a y e d . N o o n e is ever s h o w n going t h r o u g h admissions p r o c e d u r e s , which are, as we shall see, i m p o r t a n t socializing rituals. Staff is personal a n d attentive, r a t h e r t h a n impersonal a n d b u r e a u c r a t i c .

38 Socialization

for

patienting

Patients always look attractive, with c o i f f e d hair and stylish bathrobes, and are not subjected to undignified procedures b e f o r e the camera, thus failing to present a true image of the person w h o must constantly struggle to maintain dignity and identity within the hospital setting. A somewhat peripheral aspect of this socialization takes place when the child views television commercials f o r drugs. A recently released report indicates that large numbers of children are exposed to the commercials on a fairly regular basis. 2 Research has indicated that this exposure may have an e f f e c t on children's view of the patient role. Children who view many of these commercials may take illness more seriously than other children and may more easily assume the patient role. A l s o , given the tendency of these ads to show the patient restored to full health after taking the drug, children who view them m a y gain a false sense of security, believing that there is a pill f o r every disorder. This sets up the child whose condition may require more than a pill f o r a m a j o r disappointment.

School Perhaps the institution that best prepares the child f o r the patient role is the school. This may sound a bit strange at first: after all, the role of student and the role of patient are often presented as antithetical. O n e ' s first m o v e upon becoming ill is to g o home f r o m school. A n d one cannot see much overlap between the health and educational institutions in our highly differentiated society. Schools usually require a signed statement f r o m a doctor that the student is in good health; they teach a

39 little hygiene here and there; the nurse inspects for lice occasionally, and sends home notes to parents informing them that pinworms have invaded the school. If an epidemic or climatic threat to the health of the children occurs, the schools close. Aside from these gestures, then, how do the schools contribute to socialization for the patient role? The answer lies not in the exemptions and obligations of the sick role, but in the aspect of the patient role that I have called the role of person-in-a-total-institution. As the institution that most closely approximates the hospital in its concern for moving people about in groups, regulating their activities, and functioning as a bureaucracy, the school instills in its students many of the norms that will be called for in the adherence to the patient role. Thus, in some important respects, the student role is better preparation for the patient role than is the role of "sick child." The child who has learned that compliance, acceptance of one's own objectification, and conformity are necessary for survival in the school and in dealing with its representatives has already learned some of the role requirements of being a patient.' I do not mean to imply that the child should have embraced either of these roles; on the contrary, as you shall see, I am most interested in the coping strategies with which children resist total socialization to the patient role. 1 merely wish to point out the similarity of role demands between the student and the patient roles. Of course, if the child has had experiences with overnight camps or orphanages, he or she has also had firsthand experience (and of a more intense nature) with institutional living. In any event, as most children go

40 Socialization

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patenting

h o m e f r o m school and regain some power a n d identity in the evening hours, even school c a n n o t p r e p a r e t h e m completely for life within a total institution. All of this leaves the child with a jigsaw-puzzle socialization f o r the patient role. F r o m parents, b o o k s , a n d television, a notion can be gained that there is s o m e exemption f r o m blame for illness. These socializing agents also m a k e it clear that although some o t h e r roles may be eclipsed by the patient role, o n e is expected to c o n t i n u e to play the filial role while ill. T h e child k n o w s that o n e is obligated t o try to get well (but is p r o b a b l y not t o o sure just how o n e goes a b o u t that) a n d k n o w s that one is supposed to c o o p e r a t e in o n e ' s own treatm e n t . W h a t the child is not prepared f o r , except t h r o u g h the possession of a certain d e m e a n o r of subj u g a t i o n learned in school, is the experience of being a p e r s o n - i n - a - t o t a l - i n s t i t u t i o n . Socialization f o r this aspect of the child-patient role takes place mainly within the hospital itself, and follows very much the model of socialization to the inmate role as it was originally set forth by G o f f m a n . 4

Inside

devices

Mortification

rituals

G o f f m a n suggests that patients may be led to a d o p t the n o r m s associated with the role of person-in-a-totalinstitution t h r o u g h the use of what he calls " m o r t i f i c a tion r i t u a l s . ' " If we examine some of the situations that occur in the life of the hospitalized child, we shall see

41

that such rituals are indeed employed. These rituals can all be rationalized in terms of institutional goals: the manifest reasons have to do with the delivery of health care or the need for diagnosis. However, each also serves the latent function of teaching or reminding the child that there are role d e m a n d s associated with the role of person-in-a-total-institution. There is a general subservient ambiance associated with this role, and this ambiance is characterized by obedience, passivity, and a sense of lack of control over one's own life. It is interesting to note in this regard that as G o f f m a n describes the d e h u m a n i z a t i o n of his adult inmates, he protests that they are being treated like children, and that much of their mortification lies in this p h e n o m e n o n of being pushed backward in the age-grading system.'' One may then well ask: but what if one is a child? What if one is " u s e d t o " being put in situations of dependency and powerlessness? Will one, under such circumstances, simply sink naturally and easily into the role? Can one, after all, view this role as merely an extension of the child role? O r is there an additive principle involved? W h e n the powerlessness and dependency engendered by the hospital are heaped upon the child's already dependent a n d powerless status, will this simply crush the remaining individuality and self-determination the child has? W e will return to these questions later. First, we should examine the characteristics of children's hospitals that show them to be total institutions. T h e increasing bureaucratization of medical practice has been discussed by J o h n McKinlay. McKinlay sees this bureaucratization as an inevitable consequence of capitalism and its efficiency- and profit-orientations.'

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These have spread in influence from the economic sphere into other areas of social life, such as education and health. Thus, the patient becomes a product of the processes worked upon him within medical institutions. Contrary to other descriptions, which see bureaucratization as an outcome of the nature of modern technology, McKinlay's sees bureaucratization as a force that, once set in motion by the technological ethos, takes on a life of its own and determines the nature of technology. For example, it is not the way that physicians treat patients that leads to the bureaucratic nature of the hospital. Rather, it is the motives of efficiency and profit(ability) that establish bureaucratic medical institutions. The nature of these institutions then sets the tone for how doctors treat patients. McKinlay writes: A l l a c t i v i t i e s in a b u r e a u c r a c y m u s t b e a p p r o a c h e d in t e r m s o f a p r e - e x i s t i n g set o f rules. T h e o b j e c t s o f labor,

whether

household

appliances

or

beings with unique needs, must be viewed

human imper-

s o n a l l y a n d a l w a y s in t e r m s o f s u c h o v e r a l l g o a l s o f the o r g a n i z a t i o n as p r o f i t s , m i l i t a r y v i c t o r y , e d u c a t i o n , m e d i c a l services o r w h a t e v e r . T h i s m e a n s that the b u r e a u c r a t , w h e t h e r a s o c i a l w o r k e r , a p r o f e s s o r or a p h y s i c i a n , m u s t p r o c e s s the o b j e c t s o f his or her labor (clients, students, or patients) without

much

c o n c e r n f o r their i n d i v i d u a l u n i q u e n e s s . "

In addition, more and more medical care is taking place within bureaucratic settings. McKinlay shows that the number of self-employed physicians declined about 5.4 percent between 1963 and 1973. At the same time, the number of salaried physicians in offices increased by 84 percent, and the number of physicians employed by

43 hospitals by 23 p e r c e n t . T h e p r o p o r t i o n of d o c t o r s perf o r m i n g o t h e r activities within bureaucracies, such as teaching a n d research, also increased considerably." McKinlay infers that this process is going to c o n t i n u e because its progress is s u p p o r t e d by i m p o r t a n t socialstructural f a c t o r s , such as the increasing investment of large a m o u n t s of g o v e r n m e n t f u n d s in large hospitals, a medical e d u c a t i o n that renders the physician d e p e n d e n t u p o n the sophisticated machines that are only to be f o u n d in large medical institutions, a n d the trend t o w a r d specialization. 1 0 Because c h i l d r e n ' s hospitals are regarded a n d regard themselves as benevolent institutions, c o n c e r n e d with the healing of little children, t h o s e aspects of their o r g a n i z a t i o n that are also characteristic of total institutions are o f t e n n o t perceived or are ignored. T h e concept of " t o t a l i n s t i t u t i o n " c o n j u r e s u p images of prisons a n d c o n c e n t r a t i o n c a m p s . H o w e v e r , because institutional goals a n d their d e m a n d s are real a n d exist a p a r t f r o m the specific f u n c t i o n of any specific institution, the c h i l d r e n ' s hospital c a n n o t be described solely in terms of its articulated f u n c t i o n s — t h o s e c o n c e r n e d with the diagnosis a n d t r e a t m e n t of ill c h i l d r e n — b u t must take into a c c o u n t the fact that the institution must regiment a n d c o n t r o l its inmates. T h e m o v i n g a n d feeding of people in blocks m e a n s that in a d d i t i o n t o caring f o r the patients, staff must supervise t h e m . It b e c o m e s a m a t t e r of i m p o r t a n c e to e n s u r e the o b e d i e n c e of those being cared f o r . Heavy reliance o n rules a n d efficiency operates against individualized o r personalized t r e a t m e n t of the patient. O b j e c t i f i c a t i o n of the self a n d a f o c u s o n the ailment

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rather t h a n the person are characteristics imposed u p o n patients within total institutions. O n e can see how these factors flow out of the d e m a n d s of the system itself, its emphasis on paper w o r k , its fetish for specialization, which defines the patient as a " l u n g " patient or a " h e a r t " patient or a " m o d e r a t e l y ill white f e m a l e . " These characteristics can also be seen as inherent in the total institution's need to socialize the n e o p h y t e as rapidly as possible into a compliant role-player w h o will allow the system to go on functioning smoothly. Powerlessness and d e h u m a n i z a t i o n , then, are not just conditions that exist within hospitals. They are also processes involved in the socialization of the patient. T h e situations that represent crystallizations of these processes constitute what G o f f m a n has referred to as "mortification rituals": Admissions procedures might better be called "trimming" or " p r o g r a m m i n g " because . . . the new arrival allows himself to be shaped and coded into an object that can be fed into the administrative machinery of the establishment, to be worked on smoothly by routine operations. Many of these procedures depend upon attributes such as weight or fingerprints that the individual possesses merely because he is a member of the largest and most abstract of social categories, that of human being. Action taken on the basis of such attributes necessarily ignores most of his previous bases of selfidentification."

Admissions. T h e need to obtain cooperativeness f r o m the patient may lead staff to engage in early tests of the

45 p a t i e n t ' s a t t i t u d e , a n d e v e n t o c o n t e s t s o f will. Let us l o o k at the a d m i s s i o n s ritual o f o n e child with t h e s e t h o u g h t s in m i n d . I m i g h t a d d that this e x a m i n a t i o n w a s not a t y p i c a l . T h e peculiar c o m b i n a t i o n o f f a c t o r s here s i m p l y yields an e s p e c i a l l y clear illustration o f s o m e o f o u r central c o n c e r n s . R. M . , a five-year-old white male with chronic heart trouble, is here to be a d m i t t e d f o r a heart catheterization. His father is a m a s o n , his m o t h e r a h o u s e w i f e w h o has recently taken a j o b cleaning offices at night. They c o m e f r o m a rural area in the western part of the state. Dad is forty (?), is dressed in blue jeans, a l u m b e r j a c k shirt, a n d b o o n d o c k e r s , and carries a leather j a c k e t . R u d d y face, a long lean type, buck teeth. M o m is a thirty-six-year-old b r u n e t t e with teased hair, very neat in a p p e a r a n c e . R. M. is a small, pale b r u n e t , w h o , when 1 observed the family in the outer waiting r o o m , was h a p p y a n d alert, acting out a play with his Sesame Street finger p u p p e t s . H e coughed occasionally. N o w , on the way to the examining r o o m , R. M. is detained in the hall to be weighed a n d m e a s u r e d . At this time, 1 s p o k e briefly with the parents, explaining my role and asking whether they would object to my joining t h e m in the examining r o o m . T h e m o t h e r said that this would be fine. T h e examining r o o m is a long, n a r r o w r o o m , with an examining table taking u p o n e entire wall and half of the intersecting wall. Across f r o m the table are the d o c t o r ' s desk and chair, and two other institutional vinyl chairs. A n o t h e r chair is at the f o o t of the table, beside a diaper bin. T h e d o c t o r arrives, a stocky, cheerful y o u n g w o m a n , wearing slacks, wallobees and a sweater, with a stethoscope d r a p e d a r o u n d her

46 Socialization

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neck. R. M. is sitting at the very end of the examining table, by the corner. He has pulled his knees up under his chin and is very quiet. The adults sit d o w n , and the doctor turns her chair around so that she is facing the mother—and thus has her back to the child. The father can see one side of her face. All questions are directed at the mother. Dad answers those questions referred to him by the mother's saying, " O h , he'd know more about that." This man may fit some rural stereotype or other, but he has really read up on the child's problem. Very familiar with technical terms; and he has looked into the credentials of all the doctors w h o will deal with him. A barrage of questions follows—all directed at the parents, primarily to the mother: questions on the history of the illness, on pregnancy, on the other children in the family. After hearing about the four older children, the doctor suddenly turns to R. M. and says, " S o you're the b a b y ! " He shakes his head no. " Y o u ' r e the youngest?" He shakes his head yes. We then get a summary of all the health problems of other family members. (Brother has trouble with a heart valve; a grandfather had cancer; an aunt has diabetes.) They discuss their work, and the mother assures the doctor that her husband is home by the time she goes to work. R. M . ' s more recent history is taken. Does he like school? (Yes.) Has he been ill? (Yes: pneumonia two weeks ago around Thanksgiving.) Has he a good appetite? (No.) Headaches? (No.) Ear infections? (A couple.) Dad interjects, " H i s feet hurt all the time. I d o n ' t care what they say, it's due to them catheters."

47

Toilet-training is discussed. W h i l e R. M . curls u p tighter in his c o r n e r a n d covers his f a c e with his h a n d s , it is revealed that while his u r i n a r y h a b i t s h a v e been excellent, he has occasionally d e f e c a t e d in his pants. T h e m o t h e r says, " H i s bowels got a little t o o big f o r him a n d it h u r t , so he s t a r t e d going in his britc h e s . " T o which the d o c t o r r e s p o n d s , " A n y s h o r t ness of b r e a t h ? " ( N o . ) " C a n he k e e p u p with o t h e r children his o w n a g e ? " M o t h e r r e s p o n d s p r o u d l y in the a f f i r m a t i v e . " I ' m surprised at h i m ! " F a t h e r goes o n t o explain that R. M . is here because the d o c t o r s at H . said he needed a c a t h , but the f a t h e r w o u l d n ' t let t h e m d o it. D o c t o r asks, " A n d you w a n t e d him t o c o m e back h e r e ? " " M o r e experience. T e a m here is g o o d . O t h e r place not t o o well e q u i p p e d , e i t h e r . " A shift now occurs. T h e d o c t o r gets u p out of the chair, a n d R. M . , w h o has, u p until n o w , been referred to in the third p e r s o n as if he were not there, is suddenly the o b j e c t of e v e r y o n e ' s u n d i s p u t e d attention. H e glances u p a n d then covers his eyes. T h e d o c t o r tries c o n v e r s a t i o n : " W h a t h o l i d a y is coming u p ? " R. M . r e m a i n s encased in himself. " I t must be E a s t e r . " R. M . shakes his head n o , but does not look u p . " I wish it was E a s t e r , " says his m o t h e r , " I h a v e so m u c h to d o . " The doctor asks R. M. " W h a t do you want for Christmas?" N o reply. F a t h e r says, " H e w a n t s a T h u n d e r b o l t train." D o c t o r says in a quiet b u t slightly strained voice, " R . M . , why d o you cover y o u r e y e s ? "

48 Socialization

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N o response. Doctor hums a n d asks parents where t h e y p l a n t o stay. T h e m e r i t s of s l e e p i n g in t h e l o b b y are discussed. T h e d o c t o r a s k s R. M . , " W h a t is y o u r t e a c h e r ' s name?" N o response. " O k a y , lie d o w n w i t h y o u r h e a d o v e r h e r e , please." R . M . is n o w shoeless a n d s o c k l e s s a n d shirtless. T h e d o c t o r b e g i n s t o e x a m i n e h i m , listening t o his c h e s t . H e is very n e r v o u s , m a k i n g s h a r p little m o t i o n s . T h e d o c t o r begins t o t a k e o f f R . M . ' s b l u e jeans a n d asks the m o t h e r , " A n y trouble with urination?" R . M . s t a r t s t o cry. " H e d o n ' t like t o t a k e his b r i t c h e s o f f , " says t h e mother. B o t h p a r e n t s u r g e R . M . t o let t h e d o c t o r pull d o w n his p a n t s . H e k i c k s a n d cries. D o c t o r b a t t l e s w i t h this resistence until she gets t h e p a n t s o f f a n d c a n c a r r y o u t a very brief e x a m i n a t i o n of t h e g e n i t a l a r e a . R . M . pulls b a c k his p a n t s a n d c o v e r s his f a c e again. T h e d o c t o r p r e p a r e s to e x a m i n e t h e c h i l d ' s e a r s . She shows him the box containing the opt h a l m o s c o p e . " H a v e y o u ever seen o n e of t h e s e b e f o r e ? " R . M . r e m a i n s p e r f e c t l y still w i t h his f a c e still c o v e r e d . " D o y o u k n o w w h a t I'll l o o k at w i t h this?" No answer. T h e d o c t o r c o m p l e t e s t h e e x a m i n a t i o n by l o o k i n g at t h e c h i l d ' s legs a n d t e s t i n g his r e f l e x e s . ( T h i s t i m e , she rolls u p t h e legs of t h e j e a n s . ) R e m o v i n g t h e little r u b b e r h a m m e r f r o m t h e i n s t r u m e n t c a s e , she says, " N o w I t h i n k I'll hit y o u w i t h m y h a m m e r f o r a while."

49

N o response. " D o y o u k n o w what it's f o r ? " N o response. R. M . r e f u s e s t o show her his teeth. Father says that he k n o c k e d t h e m out o n his bike. T h e d o c t o r a s k s him to hold out his a r m s and he again r e f u s e s . H e b e g i n s t o cry again. H e a l s o refuses to r e s p o n d t o the d o c t o r ' s order t o s q u e e z e her finger hard, or to m a k e a fist, or even to get d o w n f r o m the e x a m i n i n g table. T h e d o c t o r gives h i m his shirt, and his m o t h e r says, " Y o u w o n ' t get a surprise if y o u d o n ' t b e h a v e . " At this point he o b e y s , gets d o w n f r o m the table, a n d w a l k s to his m o t h e r as instructed. H e says, "I'm scared!" " O h , c o m e o n , " says the d o c t o r . " T h e r e ' s n o t h i n g t o be scared o f . "

In c o n s i d e r i n g this e x a m p l e , we c a n see m u c h of t h e o b j e c t i f i c a t i o n a n d m o r t i f i c a t i o n a s s o c i a t e d with t o t a l i n s t i t u t i o n s . L i t t l e of t h e i n f o r m a t i o n c o l l e c t e d a b o u t t h i s child h a s t o d o with h i m s e l f ; r a t h e r , it f o c u s e s o n his b o d i l y f u n c t i o n s a n d o n t h e a t t r i b u t e s he h a s by v i r t u e of b e i n g a b r e a t h i n g b o d y . H e i g h t , w e i g h t , t h e f a c t t h a t h e h a s a slight f e v e r , h a v e all b e e n e s t a b l i s h e d . P r e n a t a l e n v i r o n m e n t , d e v e l o p m e n t a l milestones, a n d recent m e d i c a l f a c t s h a v e b e e n p r e s e n t e d . W e k n o w little a b o u t t h i s b o y a s a p e r s o n . Is he g e n e r a l l y h a p p y ? W h a t activities d o e s he e n j o y ? D o e s h e h a v e a n y special pers o n a l i t y t r a i t s t h a t o t h e r p e o p l e in his f a m i l y f i n d p a r t i c u l a r l y a t t r a c t i v e ? T h e o b j e c t i f i c a t i o n of t h e child is f u r t h e r e m p h a s i z e d by t h e f a c t t h a t w h i l e all of this inf o r m a t i o n relates t o h i m , it is t o his m o t h e r t h a t m o s t o f the questions are addressed. W h e n addressed to him,

50 Socialization

for

patenting

they were d e m e a n i n g — " S o y o u ' r e the b a b y ? " T h e child is being initiated into a hospital n o r m : o n e is continually u n d e r the scrutiny of impersonal a n d " o b j e c t i v e " staff m e m b e r s and is referred to in the third person. R a t h e r t h a n ask the child, " H o w have you been eating l a t e l y ? " the staff asks a third " r e s p o n s i b l e " person, " H o w ' s he been eating lately?" This reflects what Denzin has called t h e " f a l l a c y of i n c o m p e t e n c e , " the notion held by A m e r i c a n s that children are incompetent to take o n any responsibilities within their own lives. If such inc o m p e t e n c e does exist, it is m o r e t h a n likely d u e to the self-fulfilling prophecy set in motion by this very set of beliefs. 1 2 Second, intimate details of his life are brought to the conversational surface. Matters having to d o with urination a n d defecation—definitely affect-laden m a t t e r s in t h e five-year-old male peer g r o u p — a r e discussed, a n d his shortcomings in these areas are revealed. This is a m o r t i f y i n g experience, as we can see f r o m the child's response. B e c a u s e a total i n s t i t u t i o n a s p e c t s o f its i n m a t e s ' complex

squaring

away

deals with so

lives, with the at

admission,

there

special need to o b t a i n initial c o - o p e r a t i v e n e s s the

recruit.

. . . Thus

these

initial

many

consequent is

moments

s o c i a l i z a t i o n m a y i n v o l v e an " o b e d i e n c e t e s t "

a

from of and

e v e n a w i l l - b r e a k i n g c o n t e s t : an i n m a t e w h o s h o w s defiance

receives

immediate

visible

punishment,

w h i c h i n c r e a s e s until he o p e n l y " c r i e s u n c l e "

and

humbles himself."

Only when R. M. does as he is told and admits his f e a r (so valiantly concealed by his rebellious behavior) d o t h e

51

adults cease battering him with d e m a n d s a n d threats. It should be noted here that punishment need not be physical, nor even consist of a tonguelashing, but can be effectively e m b e d d e d in the bodily gesture, speech tones, a n d conversational procedures of the authorities. T h u s , the d o c t o r gradually becomes cooler. She o f f e r s fewer rewards in terms of conversational opportunities. ( N o m o r e questions a b o u t school, for example.) U n d e r the guise of j o k i n g , she even manages to remind him of her greater physical ability to implement her will: " N o w I think I'll hit you with my h a m m e r for a w h i l e . " As it t u r n e d o u t , the attending physician was unwilling to admit this child so soon a f t e r his bout with p n e u m o n i a , and the entire family, having driven f o r h o u r s to get to the hospital, forlornly d e p a r t e d . At least, the parents were f o r l o r n . R. M. perked u p the m i n u t e he heard he did not have to stay, briefly breaking into tears u p o n hearing that he would have to return in a m o n t h . H a d he been admitted to the floor, the next few hours would have presented him with f u r t h e r evidence of the fact of his status as an institutionalized person. T h e hospital places on the child's wrist an identification bracelet bearing the child's n a m e and n u m b e r . With this act, the patient is officially a d m i t t e d . T h e n the child is dispatched to the floor, where s o m e o n e will read the bracelet, rather than his or her face, to establish identity a n d the patient will be assigned to a r o o m . Most children hate the bracelet. They may m a k e faces, say nasty things a b o u t it, or try to escape f r o m it, b u t all to no avail. T h e r e is n o getting out of it. ( A l t h o u g h , as we shall see later, some children have ideas concerning this.)

52 Socialization

for

patenting

On the floor. O n the floor, the youngster is t a k e n to a r o o m , a n d there s h o w n the bed, a locker, and usually a r o o m m a t e . T h e patient may be given institutional paj a m a s t o wear. M o s t , but not all, children's hospitals permit the child t o hold o n to some personal possessions, such as a favorite hat or s t u f f e d animal. A s remn a n t s of the child's life o n the outside, these o b j e c t s are i m b u e d with great i m p o r t a n c e . They b e c o m e identity pegs—islands of individuality in a sea of institutionalization. These items are flimsy s u p p o r t s . Bracelets can be t a k e n away by staff because they can foul u p X rays. An overzealous staff person can decide that m a y b e you are really allergic to your s t u f f e d elephant. S o m e t i m e s the s t a f f deliberately remind the child of the flimsiness of these p r o p s . F o r example, o n e child became very much a t t a c h e d t o his baseball hat u p o n entering the hospital. T o him, its c o n t i n u a l display within the hospital stood between him a n d a n o n y m i t y . A n d he was correct. People knew w h o he was. " J o h n ? O h , J o h n - w i t h - t h e - h a t ! H e ' s d o w n t h e r e . " At least once a day, however, J o h n would be t h r o w n into a panic as one of the aides took the hat a n d went o f f wearing it. J o h n would have to tease a n d plead a n d pretend to be a " g o o d g u y " w h o t h o u g h t this all was f u n n y t o get his hat b a c k . A f t e r several days of this, he learned to put his hat u n d e r the pillow while this staff member was on duty, but that t o o was a d e f e a t , as he was n o longer J o h n - w i t h - t h e - h a t w h o m e v e r y b o d y knew. T h e total institution may also require the individual to a s s u m e positions that are, in o u r society, symbolically associated with lowliness and submission. Simply being

53 in bed is a mild f o r m of this, as o n e must c o n s t a n t l y address others f r o m a lower position. Being held d o w n while blood or spinal fluid is d r a w n may humiliate the patient. M a n y positions that o n e is required t o a s s u m e under the X-ray machine carry negative culture messages. Not only d o these debasing events occur, b u t , p e r h a p s m o r e importantly, there are witnesses to this d e b a s e m e n t . T h e knowledge that people are watching under such circumstances is a source of s h a m e a n d emb a r r a s s m e n t to the child. W e must recall that much of the c h i l d r e n ' s f o r m e r socialization has ill-prepared t h e m for these p r o b l e m s . Most children have been socialized not to urinate or defecate in the presence of others; they may be required to d o so in the hospital. 1 could not help w o n d e r i n g , as R. M . ' s p a r e n t s earnestly assured him that it was " a l l r i g h t " to take off his pants for the d o c t o r , if he h a d not received rather strong warning in the past a b o u t exposing his genitals, especially to m e m b e r s of the female sex. T h u s , as s o m e parental teachings are almost inevitably violated by these debasing events, the child may experience guilt as well as shame a n d e m b a r r a s s m e n t . Forced interaction is a n o t h e r hallmark of the total institution. 1 4 C h i l d r e n ' s belongings may be fingered or moved by staff while the child helplessly looks o n . T h e r e is n o choice of r o o m m a t e s — o n e takes what o n e gets—and in some cases children may find themselves living with people they have been taught to f e a r . (For exa m p l e , an ailing Jewish tot finds himself with a r o o m m a t e f r o m Saudi A r a b i a . ) In any event, the child, acting a u t o n o m o u s l y , can no longer set the pace a n d t e m p o of the d a y ' s activities. A child may w a n t to sleep, while the

54 Socialization

for

patienting

roommate wishes to see Johnny Carson. Roommates, like staff, may violate personal privacy by reading one's mail, playing with one's toys, listening to one's conversations with parents, or peeping through the curtains while one is undergoing an examination. Children may also have to witness distress on the part of another child and, through their own inability to interfere, suffer increased feelings of personal inefficacy. One child, whose mother had used her son's hospitalization as an opportunity to spend a weekend in Florida, lay stiffly in his bed, softly crying, " M o m m y , M o m m y . " The children in the adjoining rooms were quite concerned about him. They would go in and talk to him and pat him on the back. They adjusted to the monotonous rhythm of his grief. An overtired intern, however, showed less sympathy. In a loud vioice, he shouted at the child to " S h u t u p ! " and lectured him on "being a b a b y . " (The child was four years old.) The man's frantic, arm-waving performance contrasted dramatically with the still and now silent little form in the bed. Other children collected next door and witnessed the scene through the large glass windows between the two rooms. A couple of them began to cry. " S o m e o n e should tell him to shut u p , " murmured one boy as he slumped off to his own room. The simplest acts become regimented in the total institution, thus undermining even further the patient's sense of self-determination. Eating, sleeping, waking, and, quite often, defecation are functions over which the small patient loses decision-making powers. One eats when the floor is served its trays, not necessarily when one is hungry; one is to go to sleep when they turn out

55 the lights; one may be subjected to enemas, which are degrading to begin with and also determine when and where one will defecate, regardless of one's own wishes in the matter. There are two aspects of this phenomenon—regimentation and the echelon nature of a u t h o r i t y . " Patients must often perform their activities in unison with a group of others. In addition, any staff member has the ability to order any member of the inmate group around. The following observation illustrates both of these concepts. Here the demand for regimentation and the arbitrary wielding of power by a lower-level staff person can be seen intruding upon the more idealistic goals and philosophies of the hospital. In keeping with the value of making life more " f u n " for the children, staff decided to " l e t " a group of ambulatory patients go to the house cafeteria to eat dinner, rather than eat from the usual trays. A volunteer from the play-therapy department went from room to room gathering the prospective diners and herding them toward the elevator. In one room, a child was avidly watching the last few minutes of a television program, and asked to remain in his room until the conclusion (no more than three minutes). The response: " N O WAY! We've organized this as a special treat for you, and we're going N O W . If you think I'm taking all those kids downstairs and then riding that same elevator back up here just to get you, you're crazy." Thus doth self-determination fall under the sword of regimented " f u n . " A physician who is behind schedule may become irritated at the child who is a slow mover or who does not

56 Socialization

for

patenting

follow instructions a d e q u a t e l y . T h e d o c t o r m a y even b e c o m e a n n o y e d with the child whose veins d o

not

p r o v e easily accessible to the butterfly needles used in I V s and s o m e t i m e s in the gathering o f a b l o o d sample. T h e d o c t o r has p r o b a b l y set aside five minutes to accomplish this t a s k , and may now have to spend up t o f o r t y - f i v e minutes or m o r e o n it. T h i s will put him or her behind for the rest o f the day. In these instances the child is reduced to the status o f a mere body as the doctor shouts, " W h a t the hell is the matter with this kid? S h e ' s got lousy v e i n s ! " N o t only is the child j u s t a b o d y , but the implication is that this unpleasant episode is her fault. B e c a u s e she has lousy veins. Here we see the o b j e c t i f i c a t i o n and m o r t i f i c a t i o n o f the patient t a k e place, not in a deliberate f a s h i o n at all, not even with the taming o f the child in m i n d ,

but

b e c a u s e the d e m a n d s o f the institution for e f f i c i e n c y and speed create situations in which the frustrated adult loses c o n t r o l . W i t h i n the teaching hospital, o n e finds that there are a n u m b e r o f such o c c u r r e n c e s . T h e needs o f teachers to t e a c h , o f students to learn, and o f students to exhibit their a c c o m p l i s h m e n t s to teachers all can c o m e

into

direct conflict with the h o s p i t a l ' s articulated desire to provide an a t m o s p h e r e o f reassurance and security f o r the ill child. T h i s d i l e m m a is perhaps best illustrated by the c u s t o m o f " t e a c h i n g r o u n d s , " if we look at it f r o m the patient's point o f view. O n c e or perhaps several times a day (if seen as an " i n t e r e s t i n g " or rare case), the child-patient b e c o m e s the o b j e c t o f scrutiny on the part o f anywhere f r o m o n e to ten or twelve adult individuals. T h e s e people discuss the

57

patient a m o n g themselves, directing no conversation at the child other than a few cursory questions. These people may talk about what are, to the child, highly personal matters in big words that the child cannot understand, and in an objective, " s c i e n t i f i c " tone that robs the condition of the h u m a n reality the child knows to be associated with it. The main emotional state of these doctors, if we can call it that, is not concern, not sympathy, but curiosity. The child is an object to be investigated. The child's symptoms are their interests; the child's pain, their data. Physical defects of which the child may be ashamed are pointed out to the entire group. " N o t i c e how that one eye d r o o p s a little. T h a t ' s a little different f r o m the last case of this you s a w . " The vocabulary is such that the child is confused by some of it. (The vocabulary is being used primarily by those in training to impress their teachers. N o one cares whether the patient can understand it or not.) If a Latin medical name is used for the condition, rather than the term by which it is known in the h o m e , the child may think this is a new affliction in addition to the first. A r g u m e n t s may break out between staff members a b o u t the child's condition, as when two medical students are vying for the approval of the attending physician. T h e psychological impact of the squabble on the child is ignored as the true meaning of the E E G is avidly debated, with references to medical journals. T h u s , the teacher points out all the symptoms; the students o f f e r varying interpretations of the data; and, at times, the teacher grandstands for the benefit of the students.

58 Socialization

for

patienting

This grandstanding may take a form that is painful to the patient. People who saw Young Frankenstein can recall with a shudder an early scene in which the protagonist demonstrates various means of pain blockage in an elderly patient. In the case of children, psychological harm is more likely to result than any physical pain. In one instance, as a teaching session drew to a close, the doctor, who had up until this point viewed the patient with icy objectivity, bestowed upon her a beaming smile and extended his hand. Happily surprised by this sudden demonstration of warmth, the patient eagerly shook hands. Whereupon the doctor, dropping the hand and extending his arms to his followers, exclaimed, " W h a t did I tell you? The handshake! The handshake! That's always the definitive sign in these cases!" Indeed, if there is a crystallizing mortification ritual beyond the admissions examination, it would have to be the teaching rounds. It can be demonstrated, then, that the children's hospital is indeed a form of total institution that regiments its inmates, demands obedience of them, and exacts it through a series of institutionalized forms of interaction that objectify the patients and curtail their sense of self-determination. The demands of the role of person-in-a-total-institution must therefore be added to the exemptions and obligations of the sick role as they have been articulated by Parsons, and modified to reflect the situation of the child. We have indicated that the total clustering of norms associated with the child-patient role is something for which the child has little preparation prior to admission. While family, books, and television may illustrate some

59 of the e x e m p t i o n s of the sick role, little is k n o w n of the institutionalized n a t u r e of the patient role, a n d s o m e aspects of even the sick role may have been presented inauthentically. In the outside w o r l d , only the schools, t h r o u g h their insistence o n treating people in batches, have provided the child with training that may have utility within the c o n f i n e s of the hospital. Just "more of the for children?

same"

B e f o r e I close this section a n d m o v e o n to e x a m i n e the coping strategies that children d e v e l o p a n d the m a n n e r in which staff h a n d l e the c o n t r a d i c t i o n between the myths a n d realities of the child's experience in the hospital, there is o n e m a t t e r that deserves s o m e special attention. This is the issue referred t o a b o v e — t h e fact that neither G o f f m a n himself n o r o t h e r sociologists consider the impact of total institutions on children. Indeed, w h a t seems so o n e r o u s t o G o f f m a n a b o u t total institutions is that they treat a d u l t s like children: total institutions disrupt or defile precisely those actions that in civil society have the role of attesting to the actor and those in his presence that he has some c o m m a n d over his world—that he is a person with " a d u l t " self-determination, a u t o n o m y , and freedom of action. 1 6

A n d again, w h e n discussing p u n i s h m e n t s : Whatever their severity, punishments are largely known in the inmate's home world as something applied to animals and children: this conditioning,

60 Socialization

for

patienting

b e h a v i o r i s t i c m o d e l is n o t w i d e l y a p p l i e d t o a d u l t s , s i n c e f a i l u r e t o m a i n t a i n r e q u i r e d s t a n d a r d s typically l e a d s t o indirect d i s a d v a n t a g e o u s c o n s e q u e n c e s a n d n o t t o s p e c i f i c , i m m e d i a t e p u n i s h m e n t at all. " (italics added)

And: . . . t o the d e g r e e that t h e i n m a t e s a r e d e f i n e d as n o t f u l l y - a d u l t s , s t a f f n e e d n o t feel a l o s s o f s e l f - r e s p e c t by c o e r c i n g d e f e r e n c e f r o m their c h a r g e s . "

The tragedy of the total institution for G o f f m a n , then, is not so much the mortification and abasement of people so much as the mortification and abasement of adults—the p h e n o m e n o n of " p e o p l e " being treated like children. It is with this notion that I must take issue, for it implies that because the total institution represents simply " m o r e of the s a m e " experience of powerlessness to which children in this society are presumed to be accustomed, the effects on them of total institutions will be less serious. It was noted in the Introduction that we must question the inevitability of children being treated in a demeaning and regimented way. As well as the historical evidence, both cross-cultural and subcultural studies belie this. 1 " Some of these were discussed above. Joyce Ladner has described the great responsibilities that the young black girl must assume for household chores and the care of young children. Many such young homemakers must stand on boxes to reach the stove or sink. American Indian children assume responsibility for the care and feeding of cattle and horses when they are six or younger.

61 These studies also note the tremendous variety of childhood responsibilities and the high degree of social independence that can be found in children in many cultures. Denzin has described the American child as a product of the culture, the creation of a Western, industrialized, capitalistic, "representative" democracy, which holds out great promise to all and actually will deliver to only a few. 20 It is this unique clustering of variables that has produced American childhood, with its dependency, powerlessness, need for compliance, and exploitable " c u t e n e s s " and vulnerability. 21 Thus, we cannot assume that every child comes to the total institution as a dependent, submissive type, and we must recognize that those who do come this way are so not because they are children, but because they are the products of a certain societal definition of childhood. However, one might argue that even though such a product is not inevitable, it is what we most likely will find in our American hospitals. Let us, for the sake of argument, consider whether it necessarily follows that children who have been cast in the dependent, obedient role will be undamaged by their incarceration in a total institution. First, 1 must repeat that no prior experience in the average child's life is adequate preparation for being in the hospital. The family permits a far greater range of activities and behaviors, and in addition recognizes each of its members as unique in some important way. The school resembles the hospital in its bureaucratic nature, its dealing with people in batches, and its emphasis on obedience and compliance. However, the child can escape both of these institutions: that children go back

62 Socialization

for

patenting

and forth between them makes that fact self-evident. While in a total institution, the hospital, however, they will live all aspects of their lives under a single authority. There are also " c h i n k s " between institutions in which children on the outside can take refuge—the neighborhood peer group, for example. Here children can acquire an individual identity and find affirmation or reinforcement for some aspects of their world views that may run counter to those adhered to by family or school. Most have probably learned to " w o r k the system" in these more familiar institutions. They know how to cater to those in authority. They know all the rules, and they may know how to stretch them, or how, by following them to the letter, an increased sense of personal efficacy can be achieved. Children probably also know how to exploit their own cuteness in these situations." Given these realities, children may have a good sense of self and of some power over their own destinies when they arrive at the hospital. Thus, as the hospital puts these characteristics in jeopardy, it poses much the same threat to the child that it does to the adult. There is no evidence for the idea that debasement added to debasement yields neutral results. The notion of progressive debasement would seem to make more sense. Indeed, among those most severely disturbed by hospitalization seem to be children who lead an " o u t side life" in total institutions—orphanages, boarding schools, or homes for the handicapped. One has only to recall R. M. and his rapid transition f r o m imaginative puppeteer to compliant but tearful patient to realize that total institutions can have a deva-

63 stating impact o n children. H o w d o the children cope with this situation? A r e they g r o u n d d o w n by the institutions' d e m a n d s , or can r e m n a n t s of self-determination a n d identity survive?

three

Coping i: the

children

There are a great many things such a dwarf-child may do. all of them seruing as his ego defense He may withdraw into himself, speaking little to the giant and never honestly He may band together with other dwarfs, sticking close to them for comfort and self-respect He may try to cheat the giants when he can and have a taste of sweet revenge. He may, in desperation. occasionally push some giant off the sidewalk or throw a rock at him when it is safe to do so Gordon Allport "Traits Due to Victimization" from T h e Nature of Prejudice

One of the seminarians who comes to help out once a week has been put in charge of V. V. is "very wild. " runs around the halls, doesn't heed commands, and never stops moving his arms. The seminarian 's job today is to see that V doesn't drink any water until he has his dental surgery this afternoon. They are quite a pair, the earnest seminarian attempting to talk to V. seriously while V.. eyes darting from side to side, runs frantically from one drinking fountain to another, hotly pursued by his dedicated overseer. From the fieldnotes January 1976

Child-patients Within t h e total institution of the c h i l d r e n ' s hospital, children strive to hold o n to dignity, p e r s o n h o o d , a n d self-determination. T h e y hit u p o n a variety of c o p i n g strategies a n d e m p l o y a n u m b e r of symbols in the process. These strategies will be referred to as the " w i l d k i d , " the " g r e g a r i o u s h o s t , " the " e m b r a c i n g of the sick r o l e , " the " j u n i o r medical s t u d e n t , " a n d w i t h d r a w a l . The wild kid O n e strategy by which the child can m a i n t a i n s o m e identity and s o m e actual power within the institution is to b e c o m e a " w i l d k i d . " T h e wild kid yells a n d screams a lot. Wild kids sass nurses a n d terrorize o t h e r children. T h e wild kid o b s t r u c t s the w o r k i n g of the b u r e a u c racy. By m a k i n g noise, this child keeps others u p beyond the a p p o i n t e d b e d t i m e h o u r . By teasing o t h e r children, the wild kid exposes a n d a c c e n t u a t e s their helpless situations. T h e wild kid is brazen in the face of scoldings that are usually sufficient to bring o t h e r children into line, argues with the e x p l a n a t i o n s given f o r

67

68 Coping

i: the

children

the existence of rules, and can rarely be examined or tested without an exhausting struggle. Other names may be replaced with bracelets, but everyone knows the wild kid's name. Unpopular with nurses, interns, and all staff (except an occasional seminarian who likes his spunk or regards him as a great conversion challenge), this child has won a battle with institutionalization. One must deal with the wild kid on an individual level, and the norms of the children's hospital rule out corporal punishment. This leads to staff having many long personal talks with the wild kid. Thus, when P., a wild kid, began throwing radios at Gregory, his roommate, he was moved into a private room while Gregory and two other roommates remained in group quarters. The wild kid commands personal and kid-glove treatment and avoids the regimentation and objectification so characteristic of the total institution. This child is likely to be given a wide berth by staff and other children. So, while inflicting unwanted intimacy on others, the " k i d " is rarely, if ever, its recipient. The solutions that staff eventually must arrive at— short of physical punishment, which was nonexistent at Metropolis and relatively rare at County—are essentially favorable to the wild kid. Pacified with extra privileges, granted additional privacy (usually under the guise of being isolated), this rebel has managed to maintain a sense of identity and personal effectiveness within the total institution. The gregarious

host

The gregarious host is very much the opposite of the wild kid in many respects. This child attempts to handle

69 the system by being a good patient a n d m o r e . With heroic e f f o r t , the gregarious host holds back tears a n d protests during p a i n f u l p r o c e d u r e s , tries to be h e l p f u l t o frightened a n d / o r younger children, a n d never neglects to say " T h a n k y o u " to everyone. This child is almost always universally liked (except by the psychoanalytic types w h o worry a b o u t the p e n t - u p w r a t h that will soon burst f o r t h u p o n all). Nurses, interns, o t h e r children, cleaning w o m e n , all like this child. O n e such child was given gifts by the m o t h e r s of two y o u n g e r children w h o m he had helped o v e r c o m e their u n h a p p i n e s s d u r i n g their first h o u r s on the floor. These children must pay some prices. Because others tend to c o n g r e g a t e in the child's r o o m , the forced interaction of which we spoke earlier is apt to be a p r o b lem, for when the gregarious host tires of these m a n y friends, the feeling is seldom m u t u a l . T h u s , we have a paradoxical effect here. W h a t originates as a successful c o p i n g m e c h a n i s m eventually backfires on these patients, decreasing their privacy a n d self-determination even f u r t h e r a n d placing psychological strain u p o n t h e m as they strive to m a i n t a i n their gregarious image in the face of m o u n t i n g fatigue a n d irritation. These children o f t e n b e c o m e visibly exhausted, as their physical energies are i n a d e q u a t e to the social d e m a n d s placed u p o n them by their own nearly recovered friends a n d admirers. Embracing

the sick role

" E m b r a c i n g the sick r o l e " occurs when patients t h r o w themselves into the role of ill person. E x e m p t i o n s are

70 Coping

i: the

children

taken seriously. The child who has adopted this strategy wishes to remain in bed, worries about whether or not the food on the tray is healthy, asks where the blood lady is if she fails to materialize at the appointed hour, obligingly rolling u p sleeves for shots or blood tests. These children are attempting to beat the system by allying their personal needs and wishes with its demands. Thus, they can become convinced that they, rather than the system, are responsible for the day's events. The main problems here are that on some level they know it really is all show; and that, because they rely on past experience to determine what their needs are and when they are to be met, they become quite inflexible. The changes that occur in routine as recovery progresses are unanticipated by them and are often unpredictable. Here we have a case of the individual becoming more inflexible than the bureaucracy itself. For example, if this child was limited to a soft diet during the first week in the hospital, he or she may become alarmed when switched to a normal diet, believing that it can cause a relapse. Or the child may become anxious if the therapeutic routine is altered in any way, fearing that this represents forgetfulness on the part of the staff. Junior

medical

student

Embracing the patient role often overlaps with the next coping strategy, which I have called the junior medical student role. The junior medical students, often second or third admissions, have become authorities on their own disorders. Having read articles and perhaps books

71

a b o u t this c o n d i t i o n , the patient m a y even h a v e been t h e subject of such a n article. This child engages in medical discussions with d o c t o r s a n d nurses, a n d tells t h e presurgery p l a y - t h e r a p i s t to t a k e her little m a s k a n d doll and find a n o t h e r kid. T h e j u n i o r m e d i c a l s t u d e n t e m p l o y s h o s p i t a l slang with a certain degree of accuracy—says, for example, " O . R . " for " o p e r a t i n g r o o m . " T h e u n d e r l y i n g psychology of this a p p r o a c h is the r e c o g n i t i o n t h a t the o b j e c t i f i c a t i o n of the p e r s o n t o a b o d y has o c c u r r e d . T o be recognized as a p e r s o n here, or as a peer, we m i g h t say, o n e m u s t be a medical p r o f e s sional. T h i s leads t o a t a k i n g on of the characteristics of the o p p r e s s o r s , a p h e n o m e n o n t h a t has been o b s e r v e d in o t h e r i n s t i t u t i o n a l settings. 1 It also allows o n e to place an intellectual b a r r i e r between oneself a n d o n e ' s f e a r s a n d anxiety a b o u t t h e c o n d i t i o n f o r which o n e h a s been hospitalized. N o w the child, like the d o c t o r s , l o o k s at it as a n intellectual p r o b l e m to be coolly dealt w i t h . Such children, while usually liked by d o c t o r s , seem to m a k e nurses n e r v o u s a n d tend to be ignored by o t h e r children a f t e r a few c o n v e r s a t i o n s because all they care to talk a b o u t is illness.

Withdrawal/depression F o r s o m e c h i l d r e n , there seems t o be n o s o l u t i o n of a n active sort. T h e s e children simply w i t h d r a w f r o m social i n t e r a c t i o n as m u c h as they c a n . They r e m a i n in bed d u r i n g playtimes, close their eyes a n d p r e t e n d t o be asleep w h e n s t a f f or o t h e r children c o m e into t h e r o o m , a n d a s s u m e a kind of ragdoll c o m p l i a n c e d u r i n g exa m i n a t i o n s o r o t h e r p r o c e d u r e s . W h a t goes o n in their

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m i n d s is difficult to say. P e r h a p s they are thinking angry t h o u g h t s at those responsible f o r their present condition; p e r h a p s they are fantasizing themselves in happier times; p e r h a p s they are paralyzed by fears. These are invisible d a t a , a n d any s t a t e m e n t s regarding the child's inner state are, of necessity, p u r e c o n j e c t u r e . While these typologies are u s e f u l in gaining a handle on c o p i n g strategies, I m u s t w a r n against a too-rigid a d h e r e n c e to t h e m . O f t e n a child will employ m o r e t h a n o n e of the strategies, as in the c o m b i n a t i o n of embracing the sick role a n d a s s u m i n g the j u n i o r medical student role. S o m e t i m e s the s a m e child may switch f r o m o n e strategy to a n o t h e r , a n d we m a y find last week's gregarious host to be this w e e k ' s w i t h d r a w n individual. Finally, even children w h o c o n c e n t r a t e all their e f f o r t s on o n e c o p i n g strategy may not evince all the characteristics I have set f o r t h as being associated with that strategy.

Important

intervening

variables

W e should also note the need f o r f u r t h e r research in this area with regard to i m p o r t a n t sociological variables that may d e t e r m i n e the a d o p t i o n of o n e c o p i n g strategy over a n o t h e r a n d the degree to which the d e m a n d s of the patient role a f f e c t t h e m . F o r example, age may be an i m p o r t a n t variable in this respect. P e r s o n a l invasions of d i f f e r e n t types may have d i f f e r e n t m e a n i n g s for children of d i f f e r e n t ages. T h e adult focus o n genitality blinds us to the child's emphasis on his or her behind as a highly emotionally

73 charged area. : The hospital may bare this area for shots or while a leg is in traction. Nakedness alone is very threatening to five- and six-year-old boys, who may be worried about the size of their genitals. In prepubertal children of both sexes, there is concern about baring parts of oneself that are developing. Social class may also be important. Middle-class children seemed to me to have greater trouble adjusting to group living. Accustomed to their own rooms, used to being listened to with avid attention, demanding individualistic privileges, these children seem very confused by the hospital's dictates. Sex is a big factor, as the "wild k i d " and " j u n i o r medical s t u d e n t " responses are more compatible with the male role, while the "gregarious hostess" and " e m bracing the sick role" are more passive responses, and thus are more in keeping with stereotypes of female behavior. Family size and group living experiences might also be factors to investigate in this regard. Ethnicity may influence the child's response to the hospital. One's appearance may be questioned by other patients. Language may be a problem, and even one's name—the last vestige of individual identity—may be ignored or rejected. ( " W h a t kind of a name is Robert-o? I never heard of no Robert-o. We'll call you R o b . " ) We need to gain a better understanding of what the effect upon the child may be when ethnocentrism is heaped upon the institutional demands already discussed. Some of the problems that present themselves follow. The child whose parents speak a middle-class English is likely to have problems understanding the medical jargon used within the hospital. For children raised in

74 Coping

I

the

children

cultures where another form of English or another language is used, the problem is compounded. Terms like " f e b r i l e , " " v o i d e d , " and " d e f e c a t e d " are used frequently by staff without explanation. Being unable to comprehend what people are saying to them and about their conditions can increase children's feelings of helplessness. It can also make the patients feel " d u m b " and thus lower feelings of self-esteem. Family structure in many families does not resemble the idyllic norm that is the "typical American family." Among poor people and members of minority groups, one is more likely to find extended, three-generational families, single parents, and working mothers. The diversity of family arrangements that characterize the human species should have alerted doctors and nurses to the fact that no one form of family structure is inherently " n o r m a l . " However, many still cling to the notion that a " n o r m a l " family is one consisting of a working man, his homemaker wife, and their children. Adherence to this belief results in the labeling of other families as somehow deviant or abnormal. For example, the child may be brought to the hospital by a grandmother. Doctors may then hint that they think this shows a lack of concern on the mother's part. Children are quick to pick this up and may feel ashamed. Staff tend to measure family life in terms of visiting patterns (as we shall see). They are thus likely to have negative attitudes towards working mothers, who cannot spend as much time at the hospital as others. Edward Hall, in The Silent Language and The Hidden Dimension, has demonstrated the degree to which the use of our senses is determined by cultural factors. 3 For

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example, while we are a very visual culture, A r a b culture makes much m o r e use of the o l f a c t o r y sense, which we virtually ignore. Persons f r o m d i f f e r e n t cultures express e m o t i o n s differently—nonverbally as well as verbally. A careful examination of s u b g r o u p cultures a n d their nonverbal c o m m u n i c a t i o n systems remains to be d o n e , a l t h o u g h s o m e work has been d o n e in the area. However, physicians should a c q u a i n t themselves with cultural characteristics in the patient p o p u l a t i o n s they serve. A n example of the conflict that can result w h e n this is not d o n e is the case of the distrust of white physicians f o r m a n y of their American Indian patients. While A m e r i c a n culture equates the traits of honesty a n d forthrightness with looking people in the eye while talking to t h e m , N a v a j o culture believes t h a t it is extremely r u d e to look other people in the face. W h e n N a v a j o patients showed respect f o r white physicians by keeping their eyes lowered in their presence, the d o c t o r s w r o t e of the shifty a n d dishonest n a t u r e of these people w h o refused to look directly at t h e m . O n e c a n n o t ignore the fact that the racial tensions that characterize o u r society will cross over the threshold of the examining r o c m . M a n y minority children have been taught by family, peers, or experience to distrust whites a n d white institutions. S o m e of the p a i n f u l procedures associated with medical testing only serve to c o n f i r m these fears. This essentially m e a n s that the physician must m a k e an additional e f f o r t to prove himself or herself a person capable of w a r m t h a n d w o r t h y of trust in order that medical advice will be taken a n d directions followed.

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i. the

children

A n o t h e r p r o b l e m I have observed is that staff o f t e n fail t o recognize the f e a r f u l n e s s a n d vulnerability of street-wise minority children. P a r t of this is d u e to the general cultural stereotyping of minority children, and p a r t to the cavalier or t o u g h f r o n t these children can display. H o w e v e r , I have seen h a r d e n e d m e m b e r s of street gangs w h o are f e a r f u l of " n e e d l e s " or worried a b o u t w h a t a n X - r a y m a c h i n e will d o to t h e m . They need the same reassurance as o t h e r children, a n d sometimes more. A n o t h e r i m p o r t a n t f a c t o r is the personality that the child brings t o the hospital situation. C o n f i d e n t child r e n , those with high self-esteem, are better e q u i p p e d to w e a t h e r the a t t a c k s o n their h u m a n i t y t h a n are insecure a n d timid children.

The special

role of

symbols

C r o s s - c u t t i n g the c o p i n g strategies in m a n y aspects of the child's b e h a v i o r in t h e hospital, we find that the e m p l o y m e n t of symbols is an i m p o r t a n t p h e n o m e n o n . I h a d t h o u g h t initially that a good m a n y m o d i f i c a t i o n s w o u l d be needed in utilizing the G o f f m a n i a n model to examine the life of a c h i l d r e n ' s hospital. Just as a m i c r o s c o p e or pair of binoculars requires s o m e adj u s t m e n t s w h e n passed f r o m o n e person to a n o t h e r , so it seemed t o me that s o m e a d j u s t m e n t of the G o f f m a n i a n lens would be necessary to yield a clear picture of the hospitalized child. T h i s was not the case. R a t h e r t h a n presenting a n interesting b u t hazy picture of w h a t was actually going o n , the G o f f m a n i a n lens, as I looked

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t h r o u g h it, gave m e a picture of spectacular clarity. As this is surely not the experience of most researchers attempting to utilize existing theory in the analysis of their observations, it seems w o r t h y of some analysis in its own right. T h e key to the answer lies in o n e i m p o r t a n t fact: aside f r o m analysts, w h o perceive that w o r d s — " F r e u d i a n slips" and the like—are clues to feelings a n d events, children are p r o b a b l y the people w h o use a n d interpret symbols most literally, recognizing an almost direct connection between the symbol a n d what it is intended to represent. 1 shall call this characteristic " s y m b o l i c literalism." Children take their symbols m o r e literally t h a n d o adults for cognitive, psychological, a n d political reasons. Prior to early adolescence, the child's capacity for very abstract thinking is s o m e w h a t limited. Feelings that c a n n o t be well expressed w i t h o u t the use of abstractions can boil u p within the child unless they can be expressed t h r o u g h the use of symbols. A l t h o u g h most a d u l t s deny that a spinal tap or an e n e m a is an invasion of the self, viewing such procedures as medical necessities, children recognize t h e m as invasions—rapes, as it w e r e — t h a t convey the message of the powerlessness of the child a n d the power of the medical s t a f f . T h e " i m m a t u r e r a g e s " a n d tears m a n i f e s t e d by children over the removal of personal possessions, such as a f a v o r i t e item of clothing, reveal that children g r a s p the symbolic significance of such belongings as identity pegs. As long as o n e was " t h e kid in the army h a t , " o n e was not just " t h e kid in r o o m 4 1 1 , " or worse yet, " t h e b r o k e n f e m u r in 4 1 1 . "

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children

Children thus react quickly and with great excitement to the dehumanization rituals we have described. In fact, their responses may be much more profound than those of the adult patients from whom G o f f m a n derived his observations. It is this which accounts for the strange clarity of the images I received during the research. The images G o f f m a n , as a trained social scientist, had to tease out of his data by interpretation of the symbols, my subjects raised to the level of events by their own use of and reaction to the symbols. In most hospitals, the drawing of blood concludes with the application of a band-aid to the little puncture wound. The small child who is being given a blood test has no words for anxiety, or the desire to be finished with the entire procedure. However, many four- and five-year-olds begin their second sessions crying "Bandaid! Band-aid!" The little sticky strip has become associated with, and thus a symbol of, the end of the ordeal. Or a child may reject his lunch tray because it does not contain the food he ordered. This is often regarded as " s p o i l e d " by the staff; it is probably a refusal to acknowledge the fact that something of his could so easily be mistaken for something of another's. Children locate a symbol that is, in its way, a crystallization of the emotions and ideas they want to express. In the example above, the band-aid stands for: 1. The completion of the test rather than its abandonment (the child knows from others that this must be done for diagnostic reasons); 2. The end of the experience; and 3. A desire for some nurturance from the staff.

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T h e child m e n t i o n e d in the last c h a p t e r w h o had b e c o m e attached to his hat was also saying several things: 1. H e wanted to remain a k n o w n , u n i q u e individual within the hospital; 2. H e w a n t e d to m a i n t a i n a symbolic c o n n e c t i o n with the outside world; a n d 3. H e w a n t e d p r o t e c t i o n f r o m the nakedness a n d exposure inherent in the hospital experience. R e f u s a l to change p a j a m a s may represent a n a t t e m p t to maintain whatever identity has been acquired within the hospital. ( " R o y ? R o y — t h e o n e with the yellow p a j a m a s with the big m o t h o n t h e m ? " ) It is a s t a n d a r d a s s u m p t i o n of m a n y child analysts that symbols may be of m u c h greater i m p o r t a n c e to children t h a n they are to adults because, as was pointed out above, children lack the cognitive ability and verbal skills to express complicated feelings in a n y other way. If o n e is a f o r t u n a t e child, one p r o b a b l y has been u n d e r s t o o d quite well in the past by a d e q u a t e interp r e t e r s — a d u l t s w h o have, as it were, b r o k e n o n e ' s c o d e a n d w h o will r e s p o n d . T h e r e f o r e , o n e ' s m e a n s of c o m m u n i c a t i o n may have p r o v e n quite effective in the past. H o w e v e r , in the hospital e n v i r o n m e n t , people may not read the system or may simply ignore it. They may also lay a heavily F r e u d i a n i n t e r p r e t a t i o n on it. In any event, the child may b e c o m e f r u s t r a t e d a n d anxious. Psychologically, it seems t h a t children have simply not repressed the link between symbol a n d m e a n i n g as have adults. A d u l t s can engage in biting behavior with relative e q u a n i m i t y only if they deny on a conscious level the subconscious link between such behavior a n d

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children

the ambivalent love-hate feelings associated with cannibalism. The child will, on the other hand, playfully bite, maliciously grin, and say, " I love you so much, I'm going to eat you u p ! " It has been observed by students of oppressed groups that verbal rebellion, sometimes in the guise of humor, is one possible response to oppression. 4 This observation is tied to what I have called the political reason for symbolic literalism in children. Individually, oppressed persons are rarely able to carry out real revolutions in situations of powerlessness; because the " o t h e r s " can overpower them at any time, they must continue to please and placate such powerful people. They may, however, find some release in veiled forms of rebellion, employing words as weapons. Symbols for freedom, self-determination, and identity can be invoked without bringing a full measure of punishment upon one's head. For example, the slaves' use of the Moses story from the Bible to express their own desire for freedom could not be punished by whites, because it could also be interpreted as an expression of the Judeo-Christian faith. O n e February a f t e r n o o n , I spent over an hour with C . a n d his m o t h e r in the w a i t i n g area o f the a d m i s sions department. C. has a congenital kidney

pro-

b l e m a n d is o n d i a l y s i s three d a y s a w e e k at his l o c a l h o s p i t a l . H e h a d c o m e t o M e t r o p o l i s t o h a v e a news h u n t p l a c e d in his wrist w h e r e it a t t a c h e s t o the d i a l y s i s m a c h i n e . A l t h o u g h t w e l v e , C . is a b o u t

the

size o f a n o r m a l s i x - y e a r - o l d . H e is b r i g h t , a n i m a t e d a n d likes t o talk a b o u t s o f t b a l l , w h i c h h e p l a y s . T h e bright s m i l e left his f a c e , h o w e v e r , w h e n the p a p e r w o r k w a s d o n e at last, a n d a n a i d e p l a c e d the a d m i s s i o n s b r a c e l e t o n his a r m .

H e sighed loudly.

His

81

m o t h e r says, " H e just hates t h o s e things. I d o n ' t k n o w w h y , he just hates t h e m ! " "1 know h o w to get if o f f ! " s h o u t s C. In an attempt to remain c h e e r f u l , the m o t h e r says, " C o m e o n , n o w . Y o u ' l l be out of here in a c o u p l e of d a y s . " " I f 1 bit it o f f , I'd be out o f here N O W ! " says C. H e grins. ( F r o m the fieldnotes, Metropolis.)

T h r e e p o i n t s e m e r g e f r o m a c o n s i d e r a t i o n of this exa m p l e . First, it is o b v i o u s t h a t C . c o r r e c t l y perceives t h e c o n n e c t i o n b e t w e e n t h e h o s p i t a l i z a t i o n b r a c e l e t a n d his i n c a r c e r a t i o n . I n d e e d , he sees a direct c o r r e l a t i o n bet w e e n t h e t w o , such t h a t b i t i n g o f f t h e bracelet is s y n o n y m o u s in his m i n d with g e t t i n g o u t of t h e place. S e c o n d , d e s p i t e h e r p r o t e s t s of i g n o r a n c e c o n c e r n i n g t h e r e a s o n f o r h e r s o n ' s h a t r e d of t h e b r a c e l e t , t h e m o t h e r is a c t u a l l y a g o o d t r a n s l a t o r . F o r s h e c o m e s b a c k w i t h , " Y o u ' l l b e o u t of h e r e in a c o u p l e of d a y s , " r e v e a l i n g at least a n u n c o n c i o u s a w a r e n e s s of t h e c o n n e c t i o n b e t w e e n s y m b o l a n d m e a n i n g . Finally, C . k n o w s t h a t h e is p o w e r l e s s in this s i t u a t i o n . T h e n e e d s of his b o d y , t h e d e m a n d s of his p a r e n t s a n d t h e d o c t o r , a r e f a r s t r o n g e r t h a n he. H e c a n n o t f i g h t t h e m , b u t he c a n c o n d u c t a m i n i r e v o l t , a r e v o l u t i o n in disguise, a n d c u s h i o n it with a g r i n . T o n i g h t his m o t h e r will p r o b a b l y d e s c r i b e this i n c i d e n t t o his f a t h e r as s o m e t h i n g " c u t e " t h a t C . did in t h e w a i t i n g r o o m . H e h a s registered a p r o test w i t h o u t i n c i t i n g t h e a n g e r of a n y of t h e p o w e r f u l people. The minority-group comic or the flattering w o m a n o f t e n f i n d t h a t t h e safest v i c t o r y is a secret o n e p u r c h a s e d at t h e price of p l a c a t i n g m o r e p o w e r f u l , a n d t h u s p o s s i b l y d a n g e r o u s , o t h e r s . S o it m a y be with t h e child.

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T h e child, like m e m b e r s of other powerless groups, uses symbols to express feelings without seeming to m e a n t h e m , a n d so gives o f f e n s e to no one. T h u s , we can see that children have a variety of means of c o p i n g with their situation within the hospital. Some are m o r e effective t h a n o t h e r s . Assertiveness, manipulativeness, withdrawal, intellectualization, a n d the use of s y m b o l s are all e m p l o y e d , a l t h o u g h rarely all by the s a m e child. Children may also take c o m f o r t f r o m their o w n g r o u p . T h e r e is " s a f e t y in n u m b e r s , " one may speculate. They keep o n e a n o t h e r occupied, c o n f i d e in o n e a n o t h e r , a n d lend o n e a n o t h e r the courage to ask some questions or express hostility. These coping strategies m a y well ease f r u s t r a t i o n a n d fear, b u t they c a n n o t totally remove t h e m .

four

Coping ii: the staff

If students perceive some goal as important. they will very likely attain it with or without formal tutorial help. But when the faculty views proficiency in interviewing and examining patients with indifference and even scorn, the resulting impression is pervasive and probably indelible. James C. Sisson. M.D. "Negligence at the Bedside: Academic Malpractice"

Why don't you stop being so difficult, and let those people all have a look at you? You could get in big trouble. You know. What if something bad happened to you in here? N o o n e could help y o u , cause they don't know enough about you. Resident to a patient who expressed the wish not to be seen by a large group of medical students January 1978

The need for

coping

It is i m p o r t a n t to note that the needs of the hospital are real. For financial reasons, efficiency is i m p o r t a n t . It is cheaper to o f f e r a limited n u m b e r of f o o d s to the patients, to put everyone in institutional g a r b that can be laundered all at once, to hire aides with less psychological training and fewer registered nurses. It is m o r e efficient to place children in the r o o m s according to the date of their admission or type of disorder rather t h a n according to interest or personality. It saves surgeons time to have s o m e o n e else explain surgery a n d anesthesia to the child. It allows faculty m e m b e r s m o r e time for writing a n d research to have interns a n d medical s t u d e n t s examine the patients. It is easier f o r nurses to take everyone's t e m p e r a t u r e t h a n to m a k e a chart of which children need to have their t e m p e r a t u r e s taken and which d o not. O n e can u n d e r s t a n d why things are the way they are. T a k i n g the view of the institution a n d its needs, one can see the advantages to it of policies a n d practices that may a p p e a r callous at first glance. Because the children's hospitals are regarded a n d regard themselves as benevolent institutions, concerned

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86 Coping ii. the staff with healing the sick bodies a n d psyches of children, t h o s e aspects of their s t r u c t u r e that are characteristics of a total institution elude the staff f o r the most part. T h e h i d d e n requirements of c o n t r o l a n d efficiency, regiment a t i o n , a n d the m a i n t e n a n c e of o r d e r , the need to perf o r m disagreeable tests over t h e protests of the child, the c o n t i n u a l time pressures o n h o u s e s t a f f , impose a firm set of n o r m s u p o n the institution whether the staff c h o o s e to a c k n o w l e d g e it or n o t . While the staff in such total institutions as prisons have an articulated policy of keeping the prisoners in line a n d , if possible, at a distance, the children's hospital wishes its staff to relate to patients with kindness, w a r m t h , a n d reassurance. Certainly, much staff-patient interaction is of this n a t u r e , especially the nurse-patient interaction. H o w e v e r , as we have noted, attending physicians may be absent to a d i s a p p o i n t i n g degree, and o t h e r n o n n u r s i n g personnel may not have been inf o r m e d of or socialized into the value-system regarding the t r e a t m e n t of y o u n g patients. F o r example, children's feelings are f r e q u e n t l y hurt w h e n , a f t e r relaxing a n d chattering with a friendly nurse, they exuberantly greet a n aide or custodial person only to be given a gruff or sarcastic response. T h e tears with which children res p o n d to such r e b u f f s ( o f t e n regarded as " o v e r r e a c t i o n " by s t a f f ) are n o t , I believe, simply tears of w o u n d e d feelings, but c o m e f r o m the sudden awareness, precipitated by the u n k i n d response, that they are within the impersonal c o n f i n e s of an institutional setting. O t h e r examples of this type of realization seemed to o c c u r when a child would receive an incorrect meal tray. If the child was lucky, a nurse would go off to retrieve

87 the proper tray. H o w e v e r , a child w h o expressed a complaint to one of the " f o o d l a d i e s " was likely to receive n o answer at all, or to be answered by a cold, stony stare. Again, distress following such an episode has less to d o with getting a h o t d o g a n d not a h a m b u r g e r t h a n with the child's consciousness of being viewed as but o n e of many recipients of tidy little s t y r o f o a m trays, each of which is indistinguishable f r o m all o t h e r s . In a d d i t i o n , such children b e c o m e a w a r e that they are powerless to implement their desire f o r the f o o d they ordered, a n d the sense of helplessness, so characteristic of life in a total institution, is overwhelming. T h e d e m a n d s of regimentation a n d time conservation can also intrude u p o n the m o r e idealistic concerns of a children's hospital a n d may even intermingle with t h e m . S o m e of the examples cited in C h a p t e r 2 illustrate this type of conflict quite well. Such incidents result in the child's experiencing the distress b o r n of life in a total institution, despite the best intentions of the s t a f f . T h e y are essentially caught between conflicting d e m a n d s — t i m e versus the difficulty of accomplishing a t h o r o u g h e x a m i n a t i o n , the value of individual attention versus the need to feed several h u n d r e d people at o n e time, a n d so f o r t h . In the example below, however, we shall see that the underlying a s s u m p t i o n s u p o n which interaction is predicated serve to put the child in a difficult situation. In these instances, then, distress is caused directly by staff orientation, not in spite of it. O n e day during my observations, I entered an elevator and was c o n f r o n t e d by a disconcerting sight. A seven-year-old boy, badly b u r n e d , his a r m s a t t a c h e d to w o o d e n splints that held t h e m straight o u t , stood at the

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back of the elevator wearing only a pair of underpants. Standing there forlornly, his arms outstretched, his nakedness yellow under the elevator lights, he conjured up a fleeting image of the crucifixion. The ensuing conversation revealed that he had followed one of his doctors onto the elevator to talk to him. The doctor stated that he had no time to talk, and as he left the elevator had ordered the child to return to his floor. This the child was unable to do, as his splinted arms prevented his reaching the buttons in the car. He had been riding the elevator for some time, he said, going to whatever floor it went, waiting for someone else to push the button for his floor. Here, the absence of a personal relationship between child and physician and the physician's preoccupation with time and schedule caused a situation in which all of the worst characteristics of the total institution imposed themselves on the child. His sense of helplessness was intense. He was at the mercy of other people, and worst of all, of the machine; where the elevator took him, he went. There was nothing he could do physically to change this and to reach his desired destination. He was subjected to extreme mortification as his nearly naked body and its healing burns were on view to all who came into the elevator. The impersonality of the institution can be seen in the fact that he had ridden thus without anyone's offering to help him or asking him where he wanted to go. In addition, of course, he had been " t a m e d . " He would never follow a physician into an elevator again. The potential of many of these policies and practices for inflicting distress on the child cannot be denied.

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Interwoven with the process of saving time a n d m o n e y is the process of d e h u m a n i z a t i o n . The physician in this situation was an o v e r w o r k e d resident. H e had m a n y children to a t t e n d to, s o m e of w h o m were, in fact, m u c h sicker t h a n the boy in the elevator. His world was c o n f i n e d by the p a r a m e t e r s of time a n d energy. H e had been w o r k i n g a long time a n d was tired. H e had deadlines a h e a d of h i m , presentations he had to m a k e d u r i n g teaching r o u n d s . Anxiety is not a n unusual reaction to such a situation. N o r is impatience. He perceived the child w h o persisted in following him a r o u n d as an i m p e d i m e n t — a stone a r o u n d his neck, slowing him d o w n . A n d , because he was o v e r w o r k e d a n d tired, he must have felt a m o r a l righteousness a b o u t his anger. So he decided to " t e a c h him a l e s s o n . " It is impossible to k n o w w h e t h e r he f o r g o t that the child was unable to push the b u t t o n s or w h e t h e r he did not care at that m o m e n t . T h e other p e o p l e w h o entered the elevator were basically prisoners of social n o r m s . A b u n d a n t research now testifies to the reluctance of b y s t a n d e r s to interfere in emergency situations. These people were p r o b a b l y a f r a i d to interfere with what might be hospital routine, or were so c o n c e r n e d with p r o b l e m s of their own that they failed to realize the child's p r e d i c a m e n t . They t o o h a d deadlines to meet, j o b s to p e r f o r m . In this chapter we will e x a m i n e several of the struct u r a l dimensions of the lives of health-care p r o f e s s i o n a l s t h a t serve as b u f f e r s against the harsh realities of life within a children's hospital. A m o n g these are the m a n ner in which the hierarchy of prestige o p e r a t e s t o delegate tasks, the e m p h a s i s o n scientific m a t t e r s , a n d

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the i m p o r t a n c e of s u p p o r t g r o u p s for hospital personnel. Next, we will consider the ways in which the a u t o n o m y of the physician's role protects d o c t o r s f r o m realizing the stress s u f f e r e d by child-patients. Finally, we will examine the n a r r o w psychological t h e o r y of children and their hospitalization in which hospital personnel are steeped a n d which operates as a means of social c o n t r o l .

The hospital role structure support groups

and

D e h u m a n i z a t i o n h a p p e n s despite the articulated desire of the hospital to treat children h u m a n e l y . It is import a n t t o note that the degree to which it h a p p e n s is not r a n d o m l y distributed a m o n g hospitals. It is d e p e n d e n t o n several factors. First, the financial resources of the institution determine its ability to deregiment a bit a n d give m o r e individual attention to children. In some of the finer children's hospitals, a wide variety of f o o d s is available. In some, children w h o are a m b u l a t o r y may be allowed to eat in an in-hospital restaurant or snack s h o p . Rooming-in, the policy of allowing p a r e n t s to rem a i n with their children overnight, is becoming w i d e s p r e a d a n d helps to alleviate anxiety a n d the sense of depersonalization. H o w e v e r , this is by n o m e a n s a universal policy. In many hospitals the h o u r s during which parents may visit their children are still very limited. Institutions that are s o u n d e r financially need n o t stretch their resources quite so tightly, a n d may t h u s h a v e large staffs w h o can render m o r e individualized att e n t i o n to children.

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The e d u c a t i o n a l level and training of the staff also vary. In hospitals where staff have been specially trained to work with sick children, there is better t r e a t m e n t . T h e tie to a medical school is a mixed blessing. Staff are generally better trained, more aware of advances in the field of child psychology, and m o r e flexible concerning innovations. O n the o t h e r h a n d , the objectification of the child w h o is t r a n s f o r m e d into an intellectual puzzle is likely to be m o r e extreme. T h e family pediatrician by and large seems m o r e conscientious a b o u t putting in an a p p e a r a n c e at the hospital t h a n the highly acclaimed specialist. Children want to see their doctors. They have great faith in t h e m . M a n y children besiege the n u r s e ' s desk daily asking when their d o c t o r will come. At a teaching hospital, the d o c t o r is likely to send a resident. Being set u p especially as a children's hospital enables an institution t o be m o r e sensitive to the needs of the child-patients. W h e n the children's ward is merely part of a hospital, m o r e rules are a d d e d to the roster. T h e fear that the noise m a d e by children will disturb older patients elsewhere in the hospital is responsible f o r greater restrictions on children's mobility. They m u s t eat whenever the adult meals will be served, a n d m u c h of the e q u i p m e n t is outsized f o r their use. T h e a u t h o r i t y structure of the hospital hierarchy is also i m p o r t a n t . The greater the a u t o n o m y of nurses, the better they can meet the needs of their patients. O n e nurse w h o punished a boy f o r bedwetting by withholding his pain-killer, f o r example, was locked into a tight hierarchy. T h e bedwetting would be considered her mistake, the accusation irrationally attributed to her by a highly a u t h o r i t a r i a n system.

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li. the

staff

The staff in a children's hospital invoke several techniques for reaffirming the worth of their roles and the notion that they are doing the best they can. O n e of these is the strengthening of in-group ties. Associations with other staff members serve to construct a feed-back system virtually guaranteed to reaffirm one's own position and the success of the institution. The s t a f f s social order has its basis in the occupational hierarchy of the medical professions, rather than in ability, seniority, or depth of knowledge concerning a particular patient. Basically the pecking order is as shown in Figure 1. • M.D.s

v

i I^N Nurse-practitioners

Nurses \

\

Physicians' Assistants

W o r k e r FIGURE s , N u r s e1. 's Aides

Under this system any doctor may tell any nurse what to do and may bring institutional penalties to bear on the nurse who disregards, disobeys, or countermands instructions. In many circumstances, this ordering makes sense. In others, it is a bit problematical, as in the case where a new intern orders about a nurse with twenty years of experience. Nurses and doctors may direct other hospital personnel. Yet within each category there are further distinctions that hinge on age, experience, and position. An attending physician may have power over the physician who referred the child to the hospital, younger doctors,

93

residents, interns, and medical students. A fourth-year resident has power over a second-year resident. A nursing superior can direct a regular floor nurse, and a nurse who holds an R. N. degree is higher in the pecking order than a nondegree practical nurse. Both of these groups can give orders to nurse's aides. Of course, physicians can give orders to all other personnel. T o add to the complexity of this system, an administrative hierarchy overlaps the professional hierarchy. The hospital administration, in setting policies and evaluating performances, has influence over all the professionals, although older physicians do not like to acknowledge this. In this pyramidic system, it is important to each person not to incur the displeasure of any superiors. Therefore, the motivation for much that is done by staff is the desire to maintain peace within the hierarchy, regardless of the needs of the patients. In general, staff maintain two kinds of support groups. The first, composed of other members of the same stratum of the staff stratification system, serves as a sounding board for grievances against other staff members who are either above or below the complainant in the system. Thus, a nurse will wait until an offending resident is off the floor to discuss his behavior with other nurses. Similarly, aides will share their beefs with other aides and cease them upon the arrival of a nurse or doctor. These groups also function to reassure members of a stratum that their behavior toward patients has been appropriate. Should a nurse begin to feel a bit guilty about her behavior toward a child, she will approach another nurse or a group of nurses, describe the

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child's behavior, and wait for the other nurses to tell her that they would have done exactly the same thing under the circumstances. It is most unusual for a peer to offer criticism at this point. Thus, for example, a nurse might approach a group at the nurses' station, shaking her head and saying, "1 just told the kid in 240 he had to turn off his TV. He didn't sleep last night and the doctors weren't able to get him to cooperate this m o r n i n g . " The others are likely to respond with "Well, it's not your f a u l t , " "We'll just get blamed if he's cranky tom o r r o w , " and the like. It would be almost unheard of for someone to deny the nurse verbal support or to say, " L o o k , he's entitled to do what he wants as long as he isn't able to sleep. Maybe he's just nervous about the tests tomorrow and should be permitted to tire himself out so he can get to sleep." The second type of staff support group cross-cuts strata within the hospital and represents an alliance of all persons whose roles center around the same group of tasks. An example would be a group of doctors, nurses, technicians, and administrators from the X-ray department. Similarly, alliances are formed between all staff on a floor or a service. In these groups, a person can receive reassurance not only from peers, but also from authority figures, regarding behavior vis-à-vis patients. Age can also play a role here: while doctors are of higher status than nurses, it can be tremendously reassuring to a young intern to have an older, experienced nurse's advice. Both types of groups reinforce their sense of unity by frequent interaction, off-duty socializing within and outside of the hospital, and perhaps some annual ritual

95 such as a b a n q u e t or Christmas party. M e m b e r s h i p in these groups, as in most social groups, can be very imp o r t a n t . Exclusion is a fate to be avoided. T h u s , when a staff m e m b e r is put in a situation where he or she must choose between d e f e n d i n g the child whose sense of mortification a n d depersonalization leads to protest a n d m a i n t a i n i n g good relationships with other m e m b e r s of the work g r o u p , there is little d o u b t which way the staff m e m b e r will react. T h i s is especially true f o r g r o u p members whose status is yet a bit uncertain, such as a new person or a person w h o is low in his or her status hierarchy. Such a person is m o r e likely to experience severe sanction f r o m the g r o u p f o r identifying t o o closely with the patients a n d their complaints. Especially concerned with these matters are residents w h o want to be maintained by the hospital f o r a n o t h e r year a n d medical students w h o are d e p e n d e n t on the favor of the attending physician f o r good grades a n d their final status in the graduating class. P e r s o n s whose status is secure, w h o are the undisputed authorities in their areas of expertise, are more likely to break rank a n d defend the patients o n occasion. O n e p h e n o m e n o n that can be observed within these s u p p o r t g r o u p s is the use of " g a l l o w s h u m o r " as a m e a n s of alleviating anxiety a n d stress. O t h e r researchers, a m o n g them Rene'e C. Fox, have recorded the j o k i n g that physicians engage in a b o u t what seem to the layperson to be serious or s o r r o w f u l situations.' 1 observed a good deal of this type of behavior in c h i l d r e n ' s hospitals. Staff members may mimic the speech patterns of one afflicted child or the behavior of

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another. Infants with severe birth disorders that have marred their appearances are referred to cryptically as " F L K s " (funny looking kids). Jokes are made about the "veggies," children who have suffered severe central nervous system trauma and have thus become vegetablelike in their inability to use any of the senses. Such merriment often comes to a peak during annual celebrations or parties, where staff may improvise imitations or crack jokes about patients. Some hospitals have an annual " s k i t " or house staff parody in which staff members, nominally there to make fun of themselves and other staff, poke unmerciful " f u n " at their patients. For example, one such skit at another hospital featured a young intern imitating a neurologist. Part of his routine, however, was a merry little song about a child with severe brain damage, set to the tune of "Supercalifragilisticexpialidocious." H e h a d i d i o p a t h i c h y p e r a c t i v e cerebral d y s f u n c t i o n . N e u r o n s d i s c o n n e c t e d at t h e n e u r o - n e u r a l j u n c t i o n . If y o u s a y it fast e n o u g h

y o u r brain will c e a s e

to

function. Idiopathic hyperactive cerebral d y s f u n c t i o n .

Another song tells of a child victim of seizures: (Tune of "Strangers in the N i g h t " ) E v e r s i n c e that n i g h t . She's been s o spastic. C h a n c e s t o b e bright a i n ' t t o o f a n t a s t i c . H a r v a r d ' s o u t o f sight F o r s e i z u r e s in t h e n i g h t .

Another skit depicted welfare mothers demanding attention in the Emergency Room, wailing a blues number entitled " W h e n you gonna' wait on my b a b y ? "

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W h i l e it is true, as o t h e r researchers h a v e n o t e d , that this b e h a v i o r d o e s not represent cruelty but o u g h t to be perceived as part o f t h e struggle a g a i n s t d e s p a i r o n the part o f t h o s e w h o must deal o n a daily basis with situat i o n s o f d e a t h , pain, a n d h u m a n t r a g e d y , m y o w n imp r e s s i o n is that, w h a t e v e r the c a u s e , the e f f e c t is to further o b j e c t i f y the p a t i e n t . A n o t h e r s t a f f d e v i c e is t o c o n c e n t r a t e totally o n t h e " s c i e n t i f i c " or t e c h n i c a l a s p e c t s o f m e d i c i n e . T h i s all o w s the health p r o f e s s i o n a l t o a v o i d b o t h the p a t i e n t ' s e m o t i o n a l distress a n d the p r o f e s s i o n a l o b l i g a t i o n t o d o s o m e t h i n g a b o u t it. O n e of our patients was h o o k e d u p to a respirator a f t e r open heart surgery and was not d o i n g t o o well. We pored over all the lab values, E K G ' s , lung f u n c tions, and x-rays, but still c o u l d n ' t locate the source of the p a t i e n t ' s difficulty. The p a t i e n t ' s family physican entered a n d walked to the bedside. He proceeded to chat with the patient f o r the d u r a t i o n of o u r r o u n d s . H o w we scoffed at the " o l d G . P . " " H e was educated forty years a g o and probably had not opened a j o u r n a l s i n c e , " we t h o u g h t . W e were a m a z e d he h a d n ' t killed half his patients with the o u t d a t e d medicine he practiced. H e ' d ask a b o u t some lab test a n d we would s m o t h e r o u r laughter, but not our smirks until a f t e r he'd left. In spite of all our knowledge and superior skills at interpreting lab d a t a , o u r patient continued to get worse. Test followed test a n d still n o clue as to the p r o b l e m . T h e p a t i e n t ' s family physician returned later in the day a n d again spent considerable time by the bedside. B e f o r e he left, he a p p r o a c h e d us a n d said, " S a y , M r . F. has been my patient for twenty

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years now a n d I k n o w why he is d o i n g so p o o r l y . H e ' s not very sophisticated, a n d he's a f r a i d of all these m o d e r n gadgets. H e ' s also a f r a i d he might die a n d leave his family with a huge medical bill. He'll never tell you a n y t h i n g because h e ' s t o o p r o u d , a n d his anxiety is c o n t r i b u t i n g t o his p r o b l e m s . " T h e old family physician went back t o the bedside, reassured M r . F., a n d then p e r f o r m e d s o m e a p parently meaningless p r o c e d u r e s . His concern f o r his patient was o b v i o u s , as was M r . F ' s i m p r o v e m e n t in response to his a t t e n t i o n . At that m o m e n t 1 c a m e t o u n d e r s t a n d a simple yet p r o f o u n d t r u t h that I have been g r a t e f u l f o r since. T h a t " o l d G . P . " knew m o r e a b o u t the art of healing t h a n 1 could ever h o p e t o . His skills, his ability t o care a n d show c o m p a s s i o n , even w i t h o u t the latest scientific knowledge, m a d e him a g o o d physician a n d s o m e o n e we should have been e m u l a t i n g , not ridiculing. 2 S o writes the e d i t o r o f a j o u r n a l f o r y o u n g p h y s i c i a n s . In t h e s a m e j o u r n a l , o t h e r a u t h o r s call o u t t o their c o l l e a g u e s t o learn the i m p o r t a n c e o f b e d s i d e m e d i c i n e , t h e e m o t i o n a l n e e d s o f the p a t i e n t , the p a t i e n t ' s p e r c e p t i o n o f the situation. A p r e o c c u p a t i o n with the objective criteria of disease alone, may convey to persons in need t h a t their subjective experience has n o positive potential; that it is a negative event f r o m which the health p r o f e s s i o n a l must effect a rescue. 1 L a b o r a t o r y tests a n d X rays c a n be u n d e r s t o o d a n d c o m p r e h e n d e d b y the u s e o f a c q u i r e d skills a n d techn i q u e . O n e n e e d n o t feel a m b i v a l e n t or guilty a b o u t t h e

99 results. But e m o t i o n s are d i f f e r e n t , they are m o r e threatening, a n d one way to avoid t h e m is to declare them beyond the range of interest of the physician.

Physician

autonomy

Physicians are protected f r o m c o n f r o n t i n g the dehumanizing aspects of hospital life by the a u t o n o m o u s nature of the profession a n d the closed network of those w h o appraise their w o r k . Because they o p e r a t e on a one-to-one basis a n d are able to lay claim to a special set of skills a n d knowledge, physicians can pretty much d o as they wish with patients. T h e respect for their superior knowledge and social status acts as a sort of psychological s m o k e screen behind which physicians may act a u t o n o m o u s l y without interference f r o m those they serve, a privilege that is denied persons in other occupational roles. M e m b e r s of the press or the clergy, for example, may be resisted or criticized by clients w h o believe that the knowledge and skills of these professions are not so exclusive that the layperson cannot f a t h o m them. T h e a u t o n o m y of the physician makes control by the patient difficult if not impossible. T h e physicians feel that only fellow doctors are qualified to criticize them, a n d thus arises the notion of self-criticism a n d internal c o n t r o l of the profession. However, it appears that this process is somewhat less t h a n successful because physicians are reluctant to criticize one a n o t h e r . Eliot Freidson a n d others have noted the tendency to view the a u t o n o m y of the individual physician as of p a r a m o u n t

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importance within the medical subculture. Interference with another physician or criticism of the manner in which that physician conducts business is seen as a violation of this subcultural value-system. While a physician may be willing to evaluate colleagues in private, assessing them in terms of formal credentials, the gossip of patients, or conversations with the medical staff, this same physician would go to great lengths to avoid formal or public censoring of fellow physicians. 4 The importance of individual autonomy and the subcultural code of ethics (which has mainly to do with etiquette between physicians) are set forth by Freidson in his description of the physicians he observed in day-today interactions. At the c o r e of the p r o f e s s i o n a l control system of the medical g r o u p was a set of rules f o r d e f i n i n g the limits of a c c e p t a b l e p e r f o r m a n c e by reference to self, o n e ' s colleagues a n d the n a t u r e of medical work a n d w o r k p e r f o r m a n c e . T h e s e n o r m s blurred a n d w e a k e n e d the n o t i o n of collégial ability u p o n which the e f f e c t i v e o p e r a t i o n of a c o n t r o l system must rely. T h e rules g o v e r n i n g colleague r e l a t i o n s — t h e rules of e t i q u e t t e — l i m i t e d the critical e v a l u a t i o n of colleagues' work a n d d i s c o u r a g e d the expression of criticism. T h e y seemed to t a k e priority even over s t a n d a r d s of technical p e r f o r m a n c e , f o r when we f o l l o w e d out the limits of acceptable technical stand a r d s by exploring the m e a n i n g of mistakes, we f o u n d t h e m n o r m a l i z e d a n d relativized on such a b r o a d f r o n t as to m a k e t h e m f a r less likely to be subject t o r e p r o a c h t h a n were b r e a c h e s of etiquette. T h e p r o f e s s i o n a l was treated as a n individual free to follow his o w n j u d g m e n t w i t h o u t constraints, so long

101 as his behavior was short of blatant or gross deficiencies in p e r f o r m a n c e a n d i n c o n v e n i e n c e to colleagues.' Thus we see that the demands for a certain type o f behavior between colleagues assume greater importance than either technical skill or relationships with patients. Some of the special characteristics o f physician a u t o n o m y and the types of power that f l o w from it are explained by Freidson in another work. It is important to understand what professional autonomy is. It is always limited to some degree by the political power which it needs to create and protect it, and these limits vary from time to time and from place to place. Structurally, the autonomy of the consulting profession, when it is great, is an officially created organized autonomy, not the autonomy one might gain by evading attention, by being inconspicuous and unimportant. Second, that organized autonomy is not merely freedom from competition or regulation of other workers, but in the case of such a profession as medicine, if not that of less-well established claimants, it is also freedom to regulate other occupations. Where we find one occupation with organized autonomy in a division of labor, it dominates the others. Immune from legitimate regulation or evaluation by other occupations, it can itself legitimately evaluate and regulate the work of others. By its position in the division of labor, we can designate it as a dominant profession. Third, insofar as it regulates itself and is not subject to the evaluation and regulation of others, it also evaluates itself. This is to say, its educational or training institutions tend to be self-

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ii. the staff

sufficient and segregated from others—professional schools with their own independent resources and facilities. T h o s e educated for the profession get their training in such schools, largely protected from contact with faculties and students from other schools. A n d finally, when it is a consulting rather than a scholarly profession, having the right to regulate its o w n work also implies that it has been granted the legitimate right to in some way regulate the clientele with which it works, rather than having to be finely responsive to the clientele's notions of its needs, like a mere salesman. Thus, the characteristics of professional a u t o n o m y are such as to give professions a splendid isolation, indeed, the opportunity to develop a protected insularity without peer among occupations lacking the same privileges.'

The protective aspects of this type of autonomy are apparent in this description. In being able to regulate other medical professions, doctors have insured their control over nurses, dieticians, and other health-care workers within the hospital. Thus, complaints lodged by one of these other people about the care a child is receiving can be disregarded by the physician. Moreover, as it is u p to the doctors to determine what is and what is not a "serious issue," they can trivialize components of the child's condition—emotional state, fear of physicians —that might be of concern to other members of the staff. This can further distance doctors from the psychological stress experienced by their patients. The self-evaluation process referred to by Freidson will insure that a physician will not be censored or disciplined by her or his peers for insensitivity to patients. As we saw, doctors are reluctant to criticize one

103 another publicly. Whatever criticism does emerge in the face of in-group loyalties is almost certain to deal with the o f f e n d e r ' s technical errors rather than the psychological mistakes made in treating patients. The doctor's right to regulate the clientele is, of course, the theoretical rationale for the patient's uncomplainingly submitting to the tests and routines of hospital life. Any form of resistance or rebellion, then, can be written off as a violation of the physicians' prerogatives—their right to do whatever they wish in the effort to diagnose and treat their patients. The patient is quite powerless in this situation. As Derek Gill puts it: In this sense the patient is at a d o u b l e d i s a d v a n t a g e . H e has n o idea, or at m o s t a n i m p e r f e c t understanding, o f what is w r o n g with h i m a n d n o criteria f o r assessing the extent to w h i c h the d o c t o r ' s intervention has been e f f e c t i v e in curing or a m e l i o r a t i n g his condition.7

This makes it possible to interpret any distress on the part of the patient as irrational and uninformed behavior: the physician, who knows more, is always assumed to be right.

Psychology

as social

control

A n o t h e r way of avoiding the recognition that hospitalization itself is responsible for a child's unhappiness is to attribute the behavioral signs of this unhappiness to the child rather than the situation. The child may thus be

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defined as " s p o i l e d " or " a troublemaker," instead of unhappy, confused, or afraid. It is implied that the child is probably always like this, and is motivated by the desire to make life difficult for other people. No effort is made to seek out the hospital-related causes of the behavior; the patient is simply a " b a d k i d " and no more. This form of denial is probably related to several other variables, most importantly the educational level of the staff and the overall ideology of the institution. More highly trained people do not fall back on this strategy very often, while it seems fairly common in the less educated and less psychologically sophisticated staff. There was little of this at Metropolis, a great deal of it at County. People with little knowledge of psychology often operate, however cruelly, on the belief that what they are doing is really " g o o d " for the child. Staff members may expect children to perform tasks or exert controls that are really inappropriate for their ages or developmental stages—thus increasing the children's sense of helplessness. For example, a nurse refused a child an aspirin because he had wet his bed the night before and she believed that this would "teach h i m " not to wet it again. As the child's surgery had been in the genital area, it is quite possible that the bedwetting had a physiological cause, but the nurse insisted that it was just a willful act, designed to create more work for her. While such behavior on the part of the psychologically naive staff person is damaging, however, so is the behavior of the educated who use psychology as a denial and a defense. These people may attribute the child's " b a d " behavior or unhappiness to some deep-lying

105

psychological factors. T h e child's behavior is not seen here as a volitional p h e n o m e n o n , but as something over which no control can be maintained. However, this theory does not allow for the possibility that things happening in the hospital are a m o n g the causes; rather, following Freudian psychological theory, it seeks them deep within the psyche. Certain of these fears a n d anxieties have received a great deal of attention in the literature and have worked their way into the general cultural ambiance of the children's hospital. A m o n g these are fear of death, castration anxiety, a n d fear of separation f r o m the m o t h e r . It is generally accepted that children associate hospitals and operations with d e a t h . C o n f u s i o n between the sleep induced by anesthesia and the final sleep f r o m which we d o not awake is o f t e n attributed to children. M a n y hospitals attempt to deal with these fears t h r o u g h play-therapy or t h r o u g h the use of presurgical therapists w h o explain anesthesia a n d surgical p r o c e d u r e to the child b e f o r e h a n d , thus preventing these anxieties f r o m reaching a peak. It is also a c o m m o n practice now to reassure children that they will not lose i m p o r t a n t body parts as a result of their hospitalization (unless they will). This is especially true in the case of genital parts of the b o d y . A child who is having a circumcision, for example, needs to be told that he will still have his penis a f t e r the o p e r a t i o n , that it will be as big as every other m a n ' s when he is an adult, a n d that he will retain its f u n c t i o n of urination. M o r e and m o r e hospitals are extending visiting hours a n d permitting at least one parent to remain with the child overnight. This policy is a result of the studies in-

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dicating that separation from one's parents, especially one's mother, exacerbates the anxieties associated with hospitalization. All of these anxieties are undoubtedly real. 1 do not contest that; it is simply that they are not the only anxieties experienced by child-patients. Nor is the subconscious the only source of hospital anxiety, as we have seen. Having one's mother around may relieve some anxiety, but having her witness one's mortification or embarrassment may be more painful than going it alone in some cases. In addition, the attempts to deal with these anxieties are not always effective and may create more tension than they resolve. For example, a colleague told me that one hospital had attempted to resolve fears of death by never speaking of it to the young patients and by developing a code word for it: as the hospital had only six floors, they referred to death as "the seventh floor." A child who asked the whereabouts of a deceased companion would be told, "Mary is on the seventh floor." Unfortunately, this hospital was not totally self-sufficient, and from time to time a child would have to be taken over to the adjoining adult hospital (a larger and taller building) for testing. My colleague recalled vividly an occasion when she had to take a child over for a test that was to be performed on the seventh floor of the adult hospital. When the child saw her push the button labelled " 7 , " she became hysterical. At some level, she had broken the code and thought she was being taken to death. Similarly, a kindly surgeon told one of his patients not to worry about the pain of an operation, stating, "We'll operate on you while you are asleep." The child, using

107

symbolic literalism, refused to go to sleep for several days, fearing that as soon as he did so, the surgeon would creep up on him. In these situations, the child experiences the impact of the total institution in its worst aspects not only in spite of, but because of, its highest values. There seem to be two m a j o r problems with the current popularity of the psychological perspective within the children's hospital. The first is that the mere presence of specialized personnel such as play-therapists lulls other staff into a false sense of security. There is a tendency to delegate all responsibility for the child's emotional wellbeing to the specialists. This is easy to justify, given the heavy demands on the time of the staff. However, it creates a bifurcated world for the child: there are people who minister to one's bodily needs and other people who are " n i c e " to one. As a result, we see physicians who, rather than really listen to a child describing family or school problems, simply turn the child off and ask to have the social worker, chaplain, or psychiatrist attend to the matter. The message to the child, however muted, is that this is a waste of the doctor's time. O n e must remember the glorified image that many children hold of the physician to understand this situation. If we look at it f r o m a purely logical point of view, the physician may be correct. Listening to emotional problems is not what doctors are trained to do, and the other people in the hospital may be better trained to help the child in this way. But the child wants the physician's help. The child, like other members of society, perceives the doctor as a superbeing. This occupation is the most highly revered profession in the United States next to that of

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Supreme Court Justice, as is demonstrated by survey a f t e r survey. The child has been led to believe that there is little or nothing the doctor cannot do. Doctors say and do little to disabuse people of this myth of infallibility. In addition, most children form an emotional b o n d with the physician, no matter how cold a person he or she may be, and the physician's refusal to listen to a problem can easily be interpreted as rejection. It would seem that while doctors cannot handle the full resolution of personal problems themselves, they should be willing to listen attentively to the problem, discuss alternative approaches to it, and (hen suggest other hospital personnel who might be of help. The second problem with the prevalence of the psychological perspective within the hospital is that it projects the blame for children's unhappiness onto sources outside the hospital. Modern psychology is uniquely suited to perform this function of social control. Psychological theory tends to see emotional problems as arising f r o m either (1) a poor family situation, or (2) deep-rooted tensions within the afflicted person. It places little emphasis on situationally produced emotional problems. Yet we have described here many hospital-specific situations that can induce anxiety, fear, humiliation, and feelings of helplessness in the child. When a child reacts emotionally to one of these incidents, it often happens that this reaction is analyzed in psychoanalytic terms. If a child became depressed after a barium enema, for example, the psychological specialists tended to talk a great deal about sexuality, the return to the anal phase, and the child's lack of cognition concerning

109

body parts and their functions. A sociological alternative is to view the procedure itself as the cause of the child's distress. It is painful and involves the violation of one's body by total strangers. It may involve temporary loss of control over a bodily function that was the center of much guilt and shame during toilet-training. All of this may culminate in extreme feelings of helplessness and lack of control over the environment. But there are no deep-lying subconscious reasons for this: the child is helpless in this situation. The child's emotional response is not pathological but realistic. The home environment may be blamed for behavior that is, at least in part, really a product of the hospital environment. Once a child was crying after a particularly rough session with an insensitive and angry medical student. When I pointed this out to one of the psychological personnel, I was told, " H e is really crying because he found out he's going home. His mother's just awful\" In this instance, the guilt for the child's outburst was projected onto the mother rather than attributed to the hospital-specific interaction out of which it arose. Mothers are a favorite scapegoat for psychology in general, and this notion is quite obvious in the children's hospital. In fact, it is hard to see how a mother can gain the favor of these personnel. Psychology creates a series of double-bind situations that are almost guaranteed to result in her being declared guilty. For example, the mother who does not spend much time at the hospital is regarded as " n e g l e c t f u l , " "dist a n t , " or " r e j e c t i n g , " even though it may be work or a number of other children that keeps her away. On the

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other h a n d , the mother who spends a great deal of time at the hospital is considered " o v e r p r o t e c t i v e , " " e g o involved," or as subconsciously guilty for the child's condition. Even her level of discourse comes under attack: an uneducated woman is condemned as an ignoramus, inadequate to care for her own child, while the college-educated woman is seen as " t o o aggressive" or as trying to pre-empt the professional's role. The dual tendencies—the attributing of distress to deep psychological factors and the projection of guilt onto the family—function to absolve the hospital and its staff f r o m responsibility for the emotional distress evinced by child-patients.

five

Sodai and sociologicat implications

in

What children

need, we all need John Holt Escape f r o m C h i l d h o o d

Mr. F.. an elderly Black man. sits in the waiting room of Radiation Therapy. Today. as always, this World War II veteran is dressed in spotless, starched khakis His long thin hands dart nervously in front of him. like twin spiders, as he tells of his efforts to combat the side-effects of the therapy. First he lost his hair: then he developed a painful rash on his neck "And the hiccoughs is driving me crazy. They gave me something that stopped them, but then they wouldn't renew the prescription. '' He shakes his head a bit wearily. "Well. I ain't no addict. 'You not the one who have to suffer this. I told him. 'Give it to me or I'm leaving!' They gave it to me. Sometimes, you got to stand up to them " From the November

fieldnotes 1976

Sociological

Implications

T h i s sociological look at c h i l d r e n in h o s p i t a l s h a s imp l i c a t i o n s f o r t h e sociology of m e d i c i n e in g e n e r a l . T h e role of t h e h o s p i t a l i z e d child is m o r e c o m p l e x t h a n existing sociological m a t e r i a l h a s led us t o believe. A n exa m i n a t i o n of the role s h o w s it to be s t r o n g l y i n f l u e n c e d by the fact t h a t t h e c h i l d r e n ' s h o s p i t a l is a f o r m of t o t a l i n s t i t u t i o n . T h i s leads m e t o c o n c l u d e t h a t t h e role of p a t i e n t , or t h e " s i c k r o l e , " while an i m p o r t a n t p a r t of t h e t o t a l role, is i n a d e q u a t e f o r d e s c r i b i n g it as a w h o l e . T h e A m e r i c a n c o n c e p t of c h i l d h o o d i m p o s e s u p o n t h e c h i l d - p a t i e n t m a n y c h a r a c t e r i s t i c s t h a t m o d i f y t h e role. T h e n o t i o n of t h e child as a " d i f f e r e n t " e n t i t y m a k e s t h e p o w e r l e s s n e s s a n d helplessness of t h e role m o r e o b v i o u s t h a n they a r e in t h e case of the a d u l t p a t i e n t . In a d d i t i o n , t h e A m e r i c a n view of t h e child as t h e p r o p e r t y of others imposes obligations on the child-patient that m o d i f y t h e e x e m p t i o n s a s s o c i a t e d with the p a t i e n t r o l e . N o w , h o w e v e r , we r e a c h a p o i n t w h e r e t h e a r g u m e n t t u r n s o n itself a n d we m u s t r e c o g n i z e t h a t t h e e x a m i n a t i o n of t h e c h i l d - p a t i e n t role m a y in f a c t i n d i c a t e t o u s 113

114 Social

and sociological

implications

t h a t the adult patient role is not what we have been led t o believe. Adults

as

patients

W e have noted that children are not always g r a n t e d exe m p t i o n s f r o m responsibility f o r their " s i c k " c o n d i t i o n , a l t h o u g h such a n exemption is part of P a r s o n s ' model f o r the sick role. W e saw that children are quite frequently blamed f o r their conditions. In f a c t , m a n y adults are blamed f o r their conditions as well. T h e twin cultural trends of psychosomatic medicine a n d emphasis o n lifestyle have conspired to r o b the sick person of his o r her exemption f r o m responsibility f o r illness. U n d e r the penetrating glare of psychosomatics, the p e r s o n ' s illness may not even be regarded as real, but merely as a mechanism to escape a set of life-tensions. In o u r present emphasis on health f o o d s , a p o l l u t i o n - f r e e e n v i r o n m e n t , and " p h y s i c a l f i t n e s s " measures such as jogging a n d tennis, o n e finds a certain lack of s y m p a t h y f o r the ill: an u n s p o k e n a s s u m p t i o n that a correct lifestyle would confer immunity f r o m health problems. Even if illness is believed to exist (as in the case of an ulcer or a heart condition), the ulcer is blamed o n a fastmoving, ambitious lifestyle; the heart condition on p o o r eating habits and lack of exercise; high blood pressure o n bad temper or smoking; arthritis o n e m o t i o n a l instability; cancer on smoking or taking birth-control pills. W h e r e once there may have been genuine pity for the victims, there is now in m a n y cases a slight attribution of blame a n d an implication that they have b r o u g h t the problem o n themselves. T h u s , the blame we saw being a t t r i b u t e d to childpatients is also a problem f o r adults, a n d o n e that must

115 be shouldered along with the depersonalizing experiences of hospitalization. One might argue, in fact, that the two are related: it is easier to treat disrespectfully one whose condition is, after all, his or her own fault. The delivery, frequently in the presence of other people, of little moralistic sermons on the need to change one's lifestyle in order to get well has become, in fact, one of the new mortification rituals. The intense emotional demands associated with the child's filial role are pressing. Nor are adults always granted exemptions from the other roles they play in society—at least in their emotional aspects. The roles of wife, mother, friend, remain with their full sets of obligations for the ill person to fulfill. Failures to fulfill role expectations will not be forgiven or ignored. Many adult female patients must coordinate the management of home affairs from their hospital beds; sick fathers are still responsible for the insurance bills resulting from their teenager's last car accident; and patients with white-collar, " t h i n k i n g " occupations may be expected to take some work to the hospital. In addition, the needs of adults to maintain selfesteem, dignity, and autonomy in the face of the demands of the hospital as a total institution are probably little different from the child's. They are simply better disguised. A study of adult patients would no d o u b t reveal a variety of coping strategies analogous to those employed by child-patients. The ultimate point, then, is that hospitals strip people of individual identity and the means by which we all have learned to protect and maintain dignity on an everyday basis. For children, the situation is magnified because they are more powerless to begin with, may not

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and sociological

implications

h a v e acquired or perfected the skills needed to c a m o u f l a g e their vulnerability, a n d perceive the injustice of their situations clearly because they d o not accept the medical rationale f o r the humiliating circ u m s t a n c e s in which they find themselves, as d o adults. T h e depersonalization of the hospitalized individual, t h e n , is not limited to children. It is, however, m o r e obvious a n d m o r e poignant in the case of c h i l d r e n — a n d this experience has been the most neglected in the research. Personality

formation

W e f o u n d that the child-patient role has as its h a l l m a r k s t h e imposition of helplessness a n d powerlessness o n the child, whose identity is lost in the bureaucratic fixation o n efficiency a n d regimentation, w h o s e fears a n d anxieties are trivialized by emphasis on the " p u r e l y m e d i c a l " aspects of p a t i e n t h o o d or attributed to other sources. This carries i m p o r t a n c e for the developing self-esteem of the child. T h e studies of C o o p e r s m i t h indicated t w o i m p o r t a n t p h e n o m e n a . First, C o o p e r s m i t h f o u n d f o u r c o m p o n e n t s to the positive sense of self in children: 1. T h e children's security in being loved by significant others 2. A sense of c o m p e t e n c e or personal efficacy 3. A positive regard f o r their o w n ethics 4. T h e extent to which the children see themselves as having influence over their o w n lives or o t h e r people.' T h e hospital has a n adverse effect on all of these aspects of self-esteem. T h e separation f r o m p a r e n t s may

117

trigger feelings of rejection in the child. T h e lack of choice, the humiliating nature of some of the hospital experiences, may deprive the child of a sense of competence a n d / o r power. The lack of privacy, the repressed anger experienced, may cause children to d o u b t their own m o r a l righteousness. C o o p e r s m i t h f o u n d that the children with the highest sense of self-esteem had been raised in a t m o s p h e r e s that were e n c o u r a g i n g (although not permissive), stressed independence, and exhibited respect for the child as a person. 2 Other researchers have c o n f i r m e d this. 3 T h e hospital experience could thus be expected to d a m a g e self-esteem. These p h e n o m e n a gain significance f r o m a consideration of M a r t i n Seligman's n o t i o n of "learned helplessness." Drawing f r o m a variety of materials— f r o m case histories of mental patients to data f r o m the laboratory—Seligman presents a portrait of the situations in which the subject (animal or h u m a n ) comes, t h r o u g h past experience, to believe that nothing he or she does in an unpleasant situation will remedy it. Seligman's work had its origin in the strange behavior of a g r o u p of laboratory dogs. An experiment was planned in which an electric shock would be administered to an animal as it stood in one c o m p a r t m e n t of a box, a n d it would have to leap over a partition to escape the shock. In this experiment, however, some of the dogs continued to receive the shock a f t e r j u m p i n g the partitions. T h u s , n o matter what course of action they chose, staying in the first c o m p a r t m e n t or leaping over into the other one, they would experience pain. In later experiments Seligman f o u n d that the dogs w h o could avoid pain by j u m p i n g to the second c o m p a r t m e n t

118 Social

and sociological

implications

did indeed j u m p ; the other dogs, however, did n o t h i n g . They crouched shakily in their c o m p a r t m e n t s , passively receiving the shock, taking no action to avoid it. They h a d learned by their previous experiences that whatever they did, the pain would continue. This condition is w h a t Seligman calls " l e a r n e d helplessness." It involves not only the sense of futility, but also the notion that outside forces are all-powerful, that o n e ' s own actions are worthless. 4 T h e notion of learned helplessness has been applied t o people in social situations as well as to dogs in boxes. 5 In the social-psychological application of the concept, we find a person w h o seems incapable of acting to escape f r o m a social situation that is experienced as p a i n f u l . A n examination of the history of the person reveals that the situation is perceived as a " d o u b l e - b i n d " o n e — a situation of " d a m n e d if you do, d a m n e d if you d o n ' t . " T h e escape f r o m the situation is perceived as being as p a i n f u l as remaining in it. Outside forces that can administer p o w e r f u l rewards a n d punishment a p p e a r to be ready to dole out p a i n f u l punishment to the person n o m a t t e r what action is t a k e n . A n example of this is the battered wife. T h e situation in which she finds herself is p a i n f u l a n d degrading; yet past experience may have taught her that fighting back results in worse beatings, or that calling the police results in humiliation a n d , again, worse beatings. Divorce, she knows, would bring financial disaster. It seems that every potential action to escape the p a i n f u l situation will simply m a k e it worse. O n an even more general level of analysis, it has been suggested that whole groups of people may s u f f e r f r o m learned helplessness—poor people, housewives, op-

119

pressed minorities. These groups have experienced such consistent defeat of their e f f o r t s to assert themselves that withdrawn acceptance seems the most adaptive approach to life. C h i l d h o o d , of course, is the time during which the " l e a r n e d " part of learned helplessness is taking place. Arlene Skolnick has argued that it is during this time that a sense of personal efficacy is f o r m e d , not only out of relationships with the family, but out of general social associations, such as social class a n d ethnicity.' She has also argued that the deck is somewhat stacked against most children in American society, whose chances for experiencing the power that derives f r o m personal efficacy are limited by the measure of control that adults exercise over children. T h e historian Philippe Aries has shown how the evolving dependency of children in our society is rooted in the ideological and technological developments associated with the industrial revolution. Others who have studied the concept of childhood cross-culturally have pointed to the lack of a u t o n o m y of the twentiethcentury American child and the tendency of adults to m a k e decisions for children and to control their behavior. 7 As Skolnick and Denzin have pointed out, our psychological theories and ideologies support the powerlessness of children by asserting that children are essentially incompetent a n d must have things d o n e for t h e m . Skolnick addresses the link between learned helplessness and the overcontrolled world in which the A m e r i c a n child lives: The theory of learned helplessness suggests that controllable stress may be better for a child's ego

120 Social

and

sociological

implications

development than g o o d things that happen without any effort on the child's part. Self-esteem and a sense of competence may not depend on whether we experience good or bad events, but rather on whether we perceive some control over what happens to us." (italics added.)

T h u s , it is the sense of control over o n e ' s own b o d y a n d o n e ' s own life that becomes the central issue in the f o r m a t i o n of the child's self-esteem. O u r e x a m i n a t i o n of the child-patient role suggests that this sense of c o n t r o l is placed in j e o p a r d y by life within the c h i l d r e n ' s hospital. It represents in a sense an accentuation of the total experience of c h i l d h o o d in America. As Skolnick, Denzin, Holt, a n d other students of the sociology of c h i l d h o o d have been telling us, to be a child in A m e r i c a in the twentieth century is to be powerless, controlled, a n d devalued as an individual (although o f t e n very m u c h valued as s o m e o n e ' s belonging). Hospitalization magnifies this experience. It accentuates the feeling of powerlessness. It is a training g r o u n d in learned helplessness. T h e child w h o must play the child-patient role as it presently exists in our society is thus being placed in greater danger of becoming a person lacking in confidence a n d self-esteem. Ironically, the c o m p o u n d e d effects of being b o t h child and patient may have the most damaging impact of all on children whose o t h e r social statuses have presented them with images of their own powerlessness—poor and minority children. Children d o , as we have seen, evolve c o p i n g strategies that help t h e m c o n f r o n t a n d conquer the helplessness a n d powerlessness of the child-patient role. While the coping strategy I have called withdrawal p r o b a b l y

121 represents a capitulation to the powerlessness of the situation, and is thus a behavioral manifestation of learned helplessness, the other strategies set forth represent a variety of techniques by which children assert individuality and establish a sense of personal efficacy despite the obstacles set in their path by the institution. This resistance is a testimony to the resiliency of children and to their ability to recognize that situationally induced unhappiness is subject to their own efforts to control or resist it. However, while resisting the concept of the child as totally vulnerable to institutional pressures, we must recognize the strength of these pressures. The rules are hard and fast, the hospital personnel a united and formidable set of "caretakers." The child, already ill and bound by the cognitive limitations of chronologic age, has a small set of coping mechanisms to invoke. Thus, we must propose changes in the institutional environment that can assist the child in maintaining personal identity and a sense of control while in the hospital. Because many of the bureaucratic and institutional needs that are in opposition to the ideological goals of the hospital are not subject to change, efforts must be made to train personnel to create in the child-patients, in their interactions with them, a sense of personal efficacy and to contervail deliberately against the learning of helplessness.

six

Some

proposed changes

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Patients and parents know when physicians

have the right are auailable

NACHRI Proposed Bill of for Children in Hospitals

Child: Nurse: Child: Nurse.

Child: Nurse:

to

Rights

I want to see my doctor. He's not here. Hon But his office is near here. Why can't he come? Well, he's never over here on Tuesdays. Listen. Dr. C . . his resident. will be here later. But my doctor said to talk to him. Maybe he'll be in tomorrow. From the fieldnotes July 1975

Preparation

of staff

Physicians Physicians w h o work with children should be required to d e m o n s t r a t e a sensitivity to psychological a n d emotional needs just as they are required to d e m o n s t r a t e knowledge of physiological c o n d i t i o n s . W i t h this requirement in m i n d , medical e d u c a t i o n , professional review, and the hiring a n d p r o m o t i o n a l policies of the medical profession should be drastically m o d i f i e d . C o u r s e work in the psychology of c h i l d h o o d , f r o m an interactionist as well as a d e v e l o p m e n t a l point of view, should be a requirement in the medical school curriculum. Even if a student does not plan to go into pediatrics, this rule should apply. As I have hinted, there is not such a big d i f f e r e n c e between adult a n d child patients in the feelings they experience while in the hospital; children simply express themselves m o r e openly. T h e r e f o r e , the student-physician w h o will later work exclusively with adults would still benefit f r o m such courses. In a d d i t i o n , the medical schools' system 125

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changes

of clinical rotation means that all students will spend some time on the pediatric service, regardless of their ultimate career goals. Hence, they all must be prepared for their pediatric rotation. Such courses should stress the inherently depersonalizing nature of the hospital and the obligation of the staff to offset this depersonalization in their daily exchanges with patients. A student who fails this course or cuts it or tries to gain exemption from it should not be permitted to do a pediatric rotation. In addition, courses on the medical aspects of pediatrics should incorporate material on the emotional side of children's illnesses. It would be useful if texts would suggest the gentlest and least intrusive ways of dealing with children who suffer from specific ailments, and history-taking procedures that include the child-patient as a respected participant in a nonthreatening manner. Once a medical student, intern, or resident has entered the actual arena of the children's hospital, the supervision that is now focused on medical performance should be expanded to include his or her interaction with children. No student, however intelligent, should emerge from the pediatric rotation with honors if he or she has caused emotional upset to a child that is not absolutely unavoidable because of the child's condition. No resident, however wizardlike in diagnostic ability, should be retained for another year if he or she is known to respond coldly to the overtures of children or to carry out humiliating teaching rounds. Similarly, within academic medicine, promotion should depend on the person's ability to relate to patients in a humane manner as well as on clinical and research ability.

127

Older physicians should set a g o o d example. Medical students and residents are eager f o r a c c e p t a n c e a n d approval f r o m established physicians. T h e y also tend to imitate the behavior that their leaders present as acceptable within a specific institutional setting. If their models treat patients casually, disrespectfully, or impatiently, we can expect them to replicate that b e h a v i o r . If students' questions a b o u t the c h i l d r e n ' s feelings are ignored, while q u e s t i o n s a b o u t their electrolytes are pounced on as extremely interesting, the students will learn not to ask q u e s t i o n s a b o u t feelings.' They will learn instead that the hierarchy of concerns within the children's hospital places the e m o t i o n a l life of the patients firmly at the b o t t o m . Some children's hospitals have begun to hold psychological r o u n d s ; o t h e r s c o m b i n e psychological a n d ethical rounds. These i n n o v a t i o n s can be useful in t w o i m p o r t a n t ways. First, they alert an otherwise insensitive staff member t o the p r o b l e m s a child may be having within the hospital a n d result in better t r e a t m e n t . Seco n d , such r o u n d s legitimate concern a b o u t e m o t i o n a l issues within the hospital setting a n d lend it prestige. Simply having to listen to a social scientist instead of a physician on r o u n d s forces the student out of medical chauvinism and into recognition of a b r o a d e r network of persons to be respected within the hospital. All of this is not t o negate the physicians' concern with the medical aspects of their patients' lives within the hospital. A f t e r all, that is their j o b ; it is what they train for; a n d it is why they get paid. But we k n o w well enough by now ( f r o m contact with other cultures a n d f r o m our own w o r k with b i o f e e d b a c k ) that psyche a n d

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changes

soma are closely intertwined. One does one's patients a medical as well as an emotional disservice when one engages in verbal abuse or humiliation. It is a myth that good medical care and humane interaction cannot be found in the same place. They are not mutually exclusive. In fact, the two work together to effect a cure. Thus, there is no excuse for a physician's behaving in a manner that inflicts emotional pain on the patient. In training, the new physician must be made aware of that fact, and the principle should be incorporated into the examination process. Persons who do not demonstrate the ability to relate well to their child-patients should not pass pediatric boards. Modifications in traditional procedures should be undertaken if they would better the situation of the child. For example, realizing the humiliating nature of traditional teaching rounds, some children's hospitals have begun holding their " r o u n d s " in conference rooms rather than at the patients' bedside. Nurses Nurses seem to be the people least in need of lessons on the emotional experiences of children in hospitals. They consistently evince the most concern with the feelings of the patients, and many have developed very good skills of interaction with children. These skills vary, as I have noted, depending on the hospital and on the educational background of the nurse. All nursing schools should require courses in the psychology of childhood. These should not be the standard courses in normal development, although there

129 should probably also be courses on normal development. Rather, they should focus on the experience of hospitalization, the fears and anxiety generated by the experience, and the manner in which the nurse can offset some of these problems. Supervisors of students should pay as much attention to the ability of the nurse to minister to the emotional needs of children as to their physical needs. Despite the rigidly specified schedule of the nursing day, it should be realized that there will be times when the nurse is performing her role more effectively by talking to and comforting a child than by making the bed. Individual nurses, as 1 have noted, tend to show great concern for their patients. The nursing authority structure, however, often emphasizes efficiency and tidiness over more humane concerns. When a nurse chooses to sacrifice a bit of bureaucratic ritualism to make a child feel better, she should be given full support rather than chastisement. As nurses come from a variety of backgrounds and from many schools, it would be sensible for each children's hospital to hold orientation sessions to instruct new nurses on the hospital's philosophy of dealing with the anxieties and concerns of children. At that time it should be made clear what behavior on the part of nurses will not be tolerated by the institution, rather than wait for problems to arise later. As in the case of physicians, promotions should be contingent on demonstrated ability to interact humanely with patients and an effort made to counteract the inherently depersonalizing nature of the hospital. Persons who disregard these instructions and who show

130 Some

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callousness and insensitivity to the patients should be dismissed, or offered counseling and a probationary period in which to mend their ways.

Aides and other staff All other people who work in a children's hospital should receive special training, related to their tasks, that will help them deal with the emotional needs of the patients. It will benefit us little to have conscientious physicians and nurses and then send the child to an Xray department staffed by unkind or thoughtless people w h o talk about the patient in the third person ( " M o v e his arm over there") or leave parts of the child's body exposed in the public areas of the building. It cannot be emphasized enough that insensitive behavior on the part of any staff member should result in punishment a n d / o r dismissal. Such people do not belong in institutions that are supposed to help children. In addition, the child's sense of helplessness would be dramatically lessened if there were some redress in depersonalizing situations. For example, while it is bad enough to be left on a litter in the hall with one's buttocks exposed to the world, what makes it worse is the knowledge that there is nothing one can do about it and that no one cares that it happened in the first place. However, if one knew that a complaint could be filed against the person who caused this event, it would change the overall ambiance of the situation considerably. First, it would be less likely to occur, as staff generally try to avoid being negatively sanctioned. Second, if it did happen, the patient would have the

131

satisfaction of knowing that there was something to be done about it and would thus be given a redeeming sense of personal efficacy. It is important to say something specifically about aides, cleaning staff, and " f o o d " people. These people stand at the bottom of the hospital's hierarchy. They are frequently treated insensitively by other staff persons. Like other people on the bottom of hierarchies, they are angry, dissatisfied, overworked, and likely to take out their feelings on anyone who seems to be even lower than they are in the hierarchy—usually the patient. Courses and sanctions alone will not change their behavior very much. The jobs must be redefined in terms of money and prestige. Such people should be given courses on dealing with hospitalized children. The taking of a course should be viewed as a qualification for a changed j o b definition. Being a cleaning woman in a children's hospital should not be seen as " j u s t being a cleaning w o m a n , " because certain interpersonal skills are necessary for the successful performance of the j o b . These people should be seen as specialists, and their pay scales should reflect this change in definition. In this way, one could insure that all persons in the hospital receive instruction on the emotional care of the patients, and the upgrading of the j o b would give people greater self-respect and make them less likely to express hostility to the children. Finally, a worker who was not h u m a n e in interacting with children would not be excused by saying that, after all, being nice to kids is not part of the job. As it stands now, it is seen as unfair to dismiss such a worker as long as the delegated space has been kept clean. Under the

132 Some proposed

changes

s y s t e m I p r o p o s e , since being kind to c h i l d r e n is a part of t h e j o b a n d t h e r a t i o n a l e f o r its higher status, f a i l u r e t o carry o u t t h a t aspect of the j o b c o u l d w a r r a n t dismissal. It is essential t h a t these r e f o r m s be carried o u t in all a r e a s of t h e h o s p i t a l , f o r t h e child m u s t be certain of h u m a n e t r e a t m e n t in o r d e r to o f f s e t the d e p e r s o n a l i z i n g e f f e c t s of t h e t o t a l i n s t i t u t i o n t h a t a r e resistant t o c h a n g e . T h i s is a tall o r d e r . It calls f o r a r e v o l u t i o n in t h e values t h a t p r e s e n t l y direct t h e b e h a v i o r of h o s p i t a l s t a f f . T h e c h i l d ' s e m o t i o n a l well-being m u s t be s e c o n d o n l y t o t h e u n a v o i d a b l e c o n c e r n with his or her physical c o n d i t i o n , a n d well a b o v e t h e values of a b s o l u t e e f f i ciency or the n e e d s of the s t a f f f o r feelings of c o n t r o l . In o r d e r t o institutionalize t h e new e m p h a s i s o n t h e child, v i o l a t i o n s of t h e new v a l u e o r i e n t a t i o n s h o u l d meet with p u n i s h m e n t — f a s t and final.

Parents P a r e n t s can also a c q u i r e skills to i m p r o v e the childpatient's situation. First, parents must consider t h e m s e l v e s t h e c h i l d ' s a d v o c a t e s . M a n y p a r e n t s witness t h e h u m i l i a t i o n a n d h u r t inflicted on their children by t h e h o s p i t a l w i t h o u t raising an e y e b r o w , let a l o n e filing a p r o t e s t . T h i s is usually the result of the p a r e n t s ' l i f e l o n g socialization t o c o n f o r m i t y a n d o b e d i e n c e t o a u t h o r i t y . T h e prestige e n j o y e d by t h e medical p r o f e s sion in t w e n t i e t h - c e n t u r y A m e r i c a also m a k e s p a r e n t s r e l u c t a n t t o c o m p l a i n a b o u t t h e c h i l d ' s t r e a t m e n t or t o q u e s t i o n t h e w i s d o m of p r o f e s s i o n a l p e o p l e ' s b e h a v i o r . M u c h of t h e c h i l d ' s helpless a n g e r derives f r o m t h e

133

awareness that there is n o ally. M o t h e r a n d F a t h e r , w h o m one has always c o u n t e d o n in the past to remedy injustices, are now obedient c o n f o r m e r s , in alliance with the medical institution. W h e n o n e c o m p l a i n s , o n e ' s parents go " S h h h ! " In addition to protecting their children, p a r e n t s must work to offset the helplessness a n d depersonalization associated with hospitalization. P a r e n t s have already been m a d e aware of the need to alleviate c h i l d r e n ' s fears concerning bodily d a m a g e or separation f r o m t h e m . A vast literature exists o n the s u b j e c t . W e need to invest c o m p a r a b l e energy in dealing with the p r o b l e m s that arise out of being a person in a total institution. It is very i m p o r t a n t , in dealing with the p r o b l e m of learned helplessness, that p a r e n t s should a t t e m p t to structure situations that will give children a sense of control over the e n v i r o n m e n t ; f o r example, instead of presenting children with trips to the zoo or movies, parents can ask them to select s o m e t h i n g f o r the family to d o . Any experience that gives children the o p t i o n t o choose can increase this sense. If the child is d o m i n a t e d at h o m e by an older sibling, this will have to be remedied, or the child's sense of helplessness will be compounded. P a r e n t s should emphasize the individuality of the child. They should stress that the child occupies a special place in the family a n d s h o w him or her how it d i f f e r s f r o m the places occupied by siblings. Favorite p a j a m a s , toys, a n d books should be p a c k e d f o r the hospital stay. These items can o f t e n help t h e child m a i n t a i n a sense of identity in the face of the depersonalization of the hospital.

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changes

Parents must maintain their own sense of reality. They must remember that no one else really knows the child as well as they do. Thus, a mother who believes that her child wants her to remain at the hospital for a large part of the day should do just that, regardless of hints from the staff that this is "overprotective" behavior. These represent rather individualized solutions to a social dilemma. Change of an impressive nature will probably occur only when individuals band together as medical educators or health-care consumers to change the attitudes and behavior of those who control the care of hospitalized children in this society.

A bill of rights for child-patients A recent study by Suran and Lavigne, "Rights of Children in Pediatric Settings," suggests the need for such change. 2 They surveyed reactions of parents and medical personnel (physicians, nurses, nonmedical professionals, administrators, and clerical workers) to the bill of rights for children in pediatric settings proposed by the National Association of Children's Hospitals and Related Institutions (NACHRI) and a locally developed bill of rights. Significant differences occurred among these groups, with attending physicians agreeing least with the proposed children's rights. "Patients and parents have the right . . . " 1. To timely access to competent health care 2. To know the names and positions of everyone giving direct service

135

3. To medical consultation, evaluation, and referral 4. To be informed of extended delays and waits 5. To know the approximate cost of care in advance 6. To be informed of significant alternatives in treatment 7. To privacy, to know why observers are present, and to request their removal 8. To physical and verbal privacy in medical care 9. To confidentiality of written communication 10. To know when physicians are available and what care is needed during and after hospitalization Suran and Lavigne write: Possibly this tendency arises because the physicians are m o r e likely to be inconvenienced a n d restricted in their activities t h a n any other g r o u p if these rights are a d o p t e d a n d actively a d v o c a t e d . . . . O t h e r rights could p r o v e inconvenient or disruptive if patients were t o be i n f o r m e d of all delays, collect n a m e s of e v e r y o n e giving direct service a n d have an i m m e d i a t e r e s p o n s e to questions. O t h e r p r o p o s e d rights could p r o v e deleterious to medical training or practice of medical students w h o could not observe procedures because a child or his p a r e n t s o b j e c t e d , or if a patient could d e m a n d a n d receive a referral t o a specialty clinic w h e n the physician did not believe it was warranted.1

It seems that two important reminders are in order. First, these rights are not really new, but are basically subcategories of the rights to privacy, liberty, and the

136 Some proposed

changes

pursuit of happiness a l r e a d y g u a r a n t e e d us under the C o n s t i t u t i o n . S e c o n d , the references to " i n c o n v e n i e n c e " suggest that d o c t o r s need t o be reminded that sick children are n o t in t h e hospital f o r the " c o n v e n i e n c e " of the staff in t h e first place. They are there to get well. It is precisely the set of a s s u m p t i o n s on the part of physicians set f o r t h in S u r a n a n d Lavigne's analysis that must be changed f o r child-patients (or adult patients) to receive s o m e t h i n g o t h e r t h a n demoralizing and depersonalizing care within the hospital. Child-patients, as we have seen, are subject to humiliation and helplessness as p a r t of their patient status. They are in d o u b l e j e o p a r d y because they also have the status of child. I w o u l d suggest that an imp r o v e m e n t in the situation of the hospitalized child must involve not only an assertion of patient rights, but a reassessment of the A m e r i c a n view of the child as an inc o m p e t e n t , an e c o n o m i c liability—except in the role of c o n s u m e r — a s intellectually u n d e v e l o p e d a n d incapable of m a k i n g decisions. T h e notion of the i n c a p a b l e , d i s e n f r a n c h i s e d child is s u p p o r t e d by every existing A m e r i c a n institution. T h e schools, reliant on rigid d e v e l o p m e n t a l theories, teach abstractions rather t h a n practical skills. T h e virtues of compliance a n d o b e d i e n c e are stressed. 4 Children are unrepresented on the d e c i s i o n - m a k i n g bodies that determine school policy, a n d they have n o choice a b o u t w h e n , where, a n d if they will a t t e n d schools. Family structure, with its p a t r i a r c h a l hierarchy, also s u p p o r t s the helpless position of the child. T h e reluctance, until quite recently, of medical a n d legal professionals to intervene in cases of a b u s e or neglect reflects

137

o u r n o t i o n of t h e child as t h e p r o p e r t y of o t h e r s . T h e use of c h i l d r e n a s p a w n s in d i v o r c e a n d c u s t o d y suits r e i n f o r c e s this view. Legally, the child is in a " n e v e r , never l a n d . " U n a b l e to v o t e , e x c l u d e d f r o m p a r t i c i p a t i o n in t h e e c o n o m i c a r e n a , s u b j e c t t o a c o u r t s y s t e m t h a t is o n l y n o w beginn i n g t o c o n s i d e r t h e n o t i o n of c o n s t i t u t i o n a l rights f o r j u v e n i l e s , t h e child is t h e invisible p e r s o n in o u r s o c i e t y . ' H o s p i t a l a t t i t u d e s c a n b e viewed as r e f l e c t i o n s of a t o t a l societal a t t i t u d e t o w a r d c h i l d r e n . A c h a n g e in t h e g e n e r a l view of t h e child c a n n o t h e l p b u t b e n e f i t t h e h o s p i t a l i z e d child a s well. T h e s e t w o a s p e c t s of t h e s t a t u s of the h o s p i t a l i z e d c h i l d — t h e p a t i e n t s t a t u s a n d t h e child s t a t u s — a r e b o t h involved in t h e t r e a t m e n t t h e child receives in t h e h o s p i t a l . T h e y will b o t h be i n v o l v e d in e f f o r t s t o c h a n g e it. T h i s line of r e a s o n i n g s u g g e s t s t h a t t h o s e w h o wish t o i m p r o v e the t r e a t m e n t of t h e h o s p i t a l i z e d child need to p l a n their s t r a t e g y o n t w o levels. First, the h o s p i t a l - s p e c i f i c s u g g e s t i o n s f o r c h a n g e with w h i c h we b e g a n this s e c t i o n s h o u l d b e i m p l e m e n t e d . Physician training, staff recruitment and maintenance, p a r e n t a l e f f o r t s , c a n all be t u r n e d t o w a r d t h e goal of a m o r e p e r s o n a l i z e d , less helpless e x p e r i e n c e f o r the h o s p i t a l i z e d child. S u p p o s e s o m e of t h e s u g g e s t e d c h a n g e s were imp l e m e n t e d . W h a t w o u l d b e t h e n a t u r e of the c h i l d ' s new e x p e r i e n c e w i t h i n t h e h o s p i t a l ? Let us a c c o m p a n y o u r old f r i e n d R. M . o n a n i m a g i n a r y visit t o a c h i l d r e n ' s h o s p i t a l o p e r a t i n g a l o n g t h e lines we h a v e s u g g e s t e d . In t h e w a i t i n g r o o m , we w o u l d see t h a t R. M . , a l o n g w i t h his S e s a m e Street p u p p e t s , h a s w i t h h i m a p a p e r -

138 Some

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back booklet a b o u t this particular hospital. H e has had it f o r several days; the hospital mailed it to him as soon as it was k n o w n that he would be coming in. T h e booklet describes the hospital in realistic terms. It states the rules that apply t o patients a n d why those rules have been instituted. For example, it might say, " Y o u are supposed to stay on your own floor unless you have permission to ride the elevators f o r a specific p u r p o s e . This is because this is a very big building a n d some people get lost a n d have trouble finding their way back. Also, there are special parts of the hospital, such as the surgical floor or the place where the people with contagious diseases are, which are not o p e n to other p a t i e n t s . " T h e booklet would also have a section called " Y o u r R i g h t s . " It might begin with some historical references to the C o n s t i t u t i o n , such as " t h e people w h o started our c o u n t r y believed that it was very i m p o r t a n t that all the citizens of the United States have certain rights—or things that they are entitled to. S o m e of these you have heard a b o u t , f r e e d o m of speech, the f r e e d o m to have meetings when you want, and the like. Children are citizens, t o o . You a n d your family have s o m e rights that are special ones f o r the hospital. For example, you have the right to an explanation of the things people are doing to help you. You can ask the X-ray technician why the pictures will help the d o c t o r m a k e you feel better. You or your parents are entitled to i n f o r m a t i o n a b o u t y o u r condition at all times. . . . " While R. M . is in the waiting r o o m , he a n d his parents could jointly fill out a medical history f o r m . O f t e n children have m o r e accurate recollections t h a n their parents a b o u t w h e n an event occurred. ( " I fell o f f my

139

bike in July. I remember because at the hospital they had flags and stuff all over the place," or " N o , Mom, I had pneumonia the year of the Bicentennial, not '75. Don't you remember, those friends of yours from out west were staying with us and I was coughing all over t h e m ? " ) . This saves some time in the examining room and gives the child a chance to participate in the conveying of information. The physician can read this history while R. M. is being weighed and measured and having his temperature taken by the nurse. But, under our new system, the nurse would not do these things, she would help R. M. do them himself. He can weigh himself and record his weight on a chart with crayons. He can read the tape measure to determine his height, and, with the help of the large, plastic-coated thermometers employed in many European hospitals, he can take his own temperature. When we move into the examining room, we see that the arrangement of space is different. The examining table is surrounded by curtains. The room is wider now, and a circle of colorful chairs occupies most of the room. R. M . , like his parents, is asked to sit in one of the chairs. When the doctor comes in, she greets each person, with a special handshake and long eye-contact with R. M., to whom she speaks first. During the ensuing discussion, she asks the family about points in the history that are of importance and then moves on to R. M . ' s present condition. For each question, she solicits R. M . ' s opinion. " A r e you hungry these days, or d o you still have a small appetite? Do you hate food in general, or are there some favorites you like, no matter how bad your cold is?"

140 Some proposed

changes

She would use the health-related questions to establish a more personal relationship with R. M., learning about his interests, hobbies, fears, and worries about his condition. "Daddy says the doctors at H. want you to have a heart catheterization. Have you heard that term before? Do you know what a heart catheterization is? I guess if you didn't know much about it, you might worry about it. You probably want to know just what will h a p p e n . " She would then give an ageappropriate explanation, of a nonthreatening nature, to the child. The doctor might then say, "Because some of our patients are quite weak, they can catch infections very easily. So, before we officially admit you and take you up to the floor, we make sure that you don't have something they might catch, like a cold or sore throat. To make sure that you are not going up with a cold, 1 will give you a complete physical examination. You can go in to the examining area now, and pull the curtains. Take off all of your clothes except your underwear. There is a warm blanket on the table that you can wrap up in if you are cold. Do you want Mom and Dad to stay here with us, or would you like them to wait in the big waiting r o o m ? " During the physical examination, the physician might explain each instrument to the child and define its purpose. An explanation about why an examination of the genital area is necessary might prevent the kind of outbursts we saw before. If the child is still upset, the doctor might send for a male colleague (doctor or nursepractitioner) or she might ask herself honestly if the examination is necessary: R. M. had been under medical

141

scrutiny all his life with n o r e p o r t e d p r o b l e m s in this area. H e will be examined o n the f l o o r by a t t e n d i n g physicians, residents, interns, a n d medical students. Rather than upset the child, she could let this g o . ( H e r ability to d o this hinges, as I have m e n t i o n e d , o n changes in the expectations that her superiors have of her. The resident must be unlikely to chastise her f o r this, and must share the value that in such instances the wisest course of action is to leave the child alone.) At the end of the interview, the d o c t o r might ask R. M . , " I s there a n y t h i n g you w a n t to ask me? A r e you worried a b o u t a n y t h i n g ? " a n d assure him, " Y o u might think of something you want to ask me later. If you d o , my n a m e is Dr. X . You can ask the nurse to call me, or you could ask o n e of the d o c t o r s on your f l o o r . " This assures the child that the o n e a n d only c h a n c e to learn something or o b t a i n reassurance has not been abdicated. S o m e of these suggestions are already in e f f e c t at J o h n s H o p k i n s , u n d e r the new Child Life P r o g r a m . 6 There, children receive a booklet describing the hospital a n d the most c o m m o n medical p r o c e d u r e s several weeks b e f o r e admission. They m a y t a k e a t o u r of the hospital o n the weekend b e f o r e they are a d m i t t e d . Special " h e l p e r s " are assigned to the children to follow t h e m t h r o u g h the admissions p r o c e d u r e s a n d the assignment to the floor. Special e f f o r t s are m a d e t o reassure children a n d to explain medical tests a n d therapies to them so that they are not taken by surprise. Well-designed p r o g r a m s of activity a n d recreation are a part of the p r o g r a m . S c h o o l w o r k , medical play, a n d c o m m u n i t y meals are all there f o r the child, b u t w h a t is

142 Some proposed

changes

more important is that they are optional. If a child wishes not to participate, that is all right. This practice gives the child a rare opportunity to exert some control and choice in the hospital setting and addresses itself to the question of the sense of control over the environment that has arisen repeatedly throughout this book. Ideally, these qualities could be introduced into all children's hospitals, but they should also involve present hospital staff to a greater extent. In a recent article that described the Hopkins program, it was apparent that the changes have been accomplished because of the dedicated efforts of new, "special" people, the women who staff the Child Life Program. This program requires a cadre of such people and the ability to finance the program, assets not possessed by every children's hospital. It also exempts the medical staff from responsibility for the happiness or unhappiness of the child. By creating another specialized role—that of Child Life staffer—the hospital allows physicians and others to continue to behave in the manner described in this book. The difference is, presumably, that now when a child is made miserable by the medical tests or by insensitive treatment at the hands of a physician, there is a person whose j o b it is to ease that unhappiness. This is a good thing, but let us not accept it as the goal. The goal is for physicians themselves to attend the child with respect and kindness, and to take the time to reassure the child. What we are doing now, as such programs are institutionalized in increasing numbers of hospitals, may be very helpful to children, but it accentuates a dangerous trend in modern American medicine—the separation of medical and techno-

143

logical skill f r o m the affective or caring attitude of the physician. W h a t we are seeing is the differentiation of the role of physician into t w o roles—the role of technical problem solver (played by those we train and certify as physicians) a n d the role of caring healer (played by social workers, psychologists, Child Life staff persons, a n d volunteers, most of them women). It is a b e a u t i f u l example of the ever-increasing specialization a n d rule-dominated bureaucracy deplored by the early social theorist Max W e b e r . Weber wrote movingly of the increasingly bureaucratized world of Western civilization, which placed greater and greater emphasis on the efficient and the mechanical at the expense of the spiritual and humanistic aspects of life: "Specialists without spirit, sensualists without heart, this nullity imagines that it has attained a level of civilization never b e f o r e a c h i e v e d . " 7 W h a t might he think of those w h o now define spirit a n d heart as specializations? T h e ultimate f o r m of the total institution may be based precisely on this, the e p i t o m e of role division a n d special tasks, when only certain people are given the j o b of caring, a n d when your hospital bed has a b u t t o n to push labeled " c a r e r . "

Notes Bibliography and

Index

145

Notes

Introduction 1. Philippe Ariès, Centuries of Childhood: A Social History of Family Life, trans. Robert Baldick (New York: Vintage Books, 1962); J. H. Plumb, " T h e Great Change in Children," in Arlene Skolnick, ed., Rethinking Childhood (Boston: Little, Brown, 1976), pp. 205-13. 2. Ariès, Centuries of Childhood, pp. 33-34. 3. Ibid., p. 62. 4. Ibid., p. 329. 5. See, for example, Arlene Skolnick, " T h e Myth of the Vulnerable Child," Psychology Today, February 1978, pp. 56-60, 65. 6. Ariès, Centuries of Childhood, pp. 137-349. 7. John Holt, Escape from Childhood (New York: Balantine Books, 1976), pp. 6-77. 8. Holt, Escape from Childhood, pp. 57-77. 9. For a discussion of value-free sociology, see Alvin Gouldner's "Anti-Minotaur: The Myth of Value Free Sociology," in Sociology: Introductory Readings in Mass, Class and Bureaucracy, ed. J. Bensman and B. Rosenberg (New York: Praeger, 1975), pp. 45-48.

147

148 Notes Chapter 1 1. National Center for Health Statistics, Hospitalization Statistics, Department of Health, Education and Welfare publication N o . 72-1029 (Washington, D.C.: U.S. Government Printing Office, 1972). 2. Ibid. 3. Talcott Parsons, The Social System (New York: Free Press, 1964), pp. 436-37. 4. Parsons, The Social System, p. 456. 5. Alexander Segall, " T h e Sick Role Concept: Understanding Illness Behavior," Journal of Health and Social Behavior 17 (1976): 162-69. 6. David Mechanic, "Illness and Social Disability: Some Problems in Analysis," Pacific Sociological Review 2 (1959): 37-41. 7. Lawrence Kohlberg, " A Cognitive-Developmental Analysis of Children's Sex Role Concepts and Attitudes," in The Development of Sex Differences, ed. E. Maccoby (Stanford: S t a n f o r d University Press, 1966); Ann Beuf, Red Children in While America (Philadelphia: University of Pennsylvania Press, 1977). 8. H. Kempe, et al., Current Pediatric Diagnosis and Treatment, 3d ed. (Los Altos, Cal.: Lange Medical Publications, 1974), p. 617. 9. Erving G o f f m a n , Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (Garden City, N.Y.: Anchor Books, 1961). 10. Ibid., p. 6. Chapter 2 1. A . Weber, Elizabeth Crowell, 1969).

Gets Well (New York: Thomas P.

149

2. Charles K. Atkins, " T h e Effects of Television Advertising on Children: Survey of Pre-Adolescents' Responses to Television Commercials" (Report submitted to the Office of Child Development, Department of Health, Education and Welfare, 1975). 3. N. Denzin, " T h e Politics of C h i l d h o o d , " in Children and Their Caretakers, ed. N. Denzin (New Brunswick, N.J.: Transaction Press, 1973), pp. 1-26. 4. G o f f m a n , Asylums. 5. Ibid., pp. 16-18. 6. Ibid. 7. John B. McKinlay, " T h e Changing Political and Economic Context of the Patient-Physician E n c o u n t e r , " in The Doctor-Patient Relationship in the Changing Health Scene, ed. Eugene B. Gallagher. D H E W Publication No. (NIH) 78-183 (Washington, D.C.: U.S. Government Printing Office, 1978), pp. 155-88. 8. Ibid. 9. Ibid., p. 160-62. 10. Ibid., p. 162. 11. G o f f m a n , Asylums, p. 16. 12. R. Benedict, "Continuities and Discontinuities in Cultural Conditioning," in Rethinking Childhood, ed. Arlene Skolnick (Toronto: Little, Brown, 1976), pp. 19-28. 13. G o f f m a n , Asylums, pp. 16-17. 14. Ibid., pp. 28-29. 15. Ibid., p. 42. 16. Ibid., p. 43. 17. Ibid., p. 9. 18. Ibid., p. 115. 19. Benedict, "Continuities and Discontinuities in Cultural Conditioning"; J. Ladner, Tomorrow's Tomorrow: The Black Woman (Garden City, N.Y.: Doubleday, 1971). 20. Denzin, "Politics of C h i l d h o o d . "

150 Notes 21. Holt, Escape from Childhood, 22. Ibid., pp. 69-94.

pp. 69-94.

Chapter 3 1. G o f f m a n , Asylums, pp. 62-66; Bruno Bettelheim, "Individual and Mass Behavior in Extreme Situations," in Readings in Social Psychology, ed. Maccoby, Newcomb, and Hartley (New York: Holt, Rhinehart and Winston, 1958), pp. 300-312. 2. Erik H. Erikson, Childhood and Society, 2d ed., rev. (New York: Norton, 1964). 3. Hall, E. The Silent Language (Garden City, N.Y.: Anchor Books, 1959); The Hidden Dimension (Garden City, N.Y.: Anchor Books, 1966). 4. Gordon Allport, The Nature of Prejudice (Garden City, New York: Doubleday Anchor Books, 1958), pp. 139-58.

Chapter 4 1. Renée C. Fox, Experiment Perilous, (Philadelphia: University of Pennsylvania Press, 1974), pp. 61, 63-64, 76, 80, 107, 182, 228. 2. Doug Outcult, "The Limits of Technical Care," The New Physician 27 (1978): 55. 3. James C. Sisson, "Negligence at the Bedside: Academic Malpractice," The New Physician 27 (1978): 35. 4. Eliot Freidson, Doctoring Together (New York: Elsevier, 1975), p. 139 5. Ibid., p. 241. 6. Eliot Freidson, Profession of Medicine: A Study of the Sociology of Applied Knowledge (New York: Dodd, Mead, 1971), p. 369.

151

7. Derek G. Gill, "Limitation upon Choice and Constraints over Decisionmaking in Doctor-Patient Exchanges," in The Doctor-Patient Relationship in the Changing Health Scene, ed. Eugene B. Gallagher. DHEW Publication No. (NIH) 78-183 (Washington, D.C.: U.S. Government Printing Office, 1978), p. 143. Chapter 5 1. S. Coopersmith, The Antecedents of Self-Esteem (San Francisco: W. H. Freeman, 1967). 2. Coopersmith, Antecedents of Self-Esteem. 3. E. M. Hetherington, "Sex-Typing, Dependency and Aggression," in Perspectives in Child Psychology: Research Review, ed. T. D. Spencer and N. Cass (New York: McGrawHill, 1970); V. J. Crandall et al., " M a t e r n a l Reactions and the Development of Independency and Achievement Behavior in Young Children," Child Development 31 (1960): 243-51. 4. M. E. Seligman, Helplessness: On Depression, Development and Death (San Francisco: W. H. Freeman, 1975). 5. See, for example, K. A. Clark, Youth in the Ghetto: A Study of the Consequences of Powerlessness and a Blueprint for Change (New York: Haryou, 1964); and Seligman, Helplessness. 6. " T h e Myth of the Vulnerable C h i l d . " 7. Aries, Centuries of Childhood, pp. 128-33. 8. Skolnick, " T h e Myth of the Vulnerable C h i l d . " Chapter 6 1. W. Carlton, In Our Professional Opinion: The Primacy of Clinical Judgment over Moral Choice (Notre Dame, Inc.: University of Notre Dame Press, 1978).

152 Notes 2. Bernard Suran and John V. Lavigne, "Rights of Children in Pediatric Settings: A Survey of Attitudes," Pediatrics 60 (1977): 715-20. 3. Suran and Lavigne, "Rights of Children." 4. Denzin, "Politics of Childhood." 5. J. Goldstein, A. Freud, and J. Solnit, Beyond the Best Interests of the Child (New York: Free Press, 1973). 6. See P. Gray, " Y o u ' r e Scared and You're Hurt and You're Four Years O l d , " in Johns Hopkins Magazine, May 1978, pp. 7-15. 7. Max Weber, The Protestant Ethic and the Spirit of Capitalism, trans. Talcott Parsons (New York: Charles Scribner's Sons, 1958), p. 243.

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Allport, G o r d o n . The Nature of Prejudice. Garden City, N.Y.: Doubleday Anchor Books, 1958 Aries, Philippe. Centuries of Childhood: A Social History of Family Life. Translated by Robert Baldick. New York: Vintage Books, 1962. Atkins, Charles K. " T h e Effects of Television Advertising on Children: Survey of Pre-Adolescents' Responses to Television Commercials." Report submitted to the Office of Child Development, Department of Health, Education and Welfare, 1975. Averiii, J. R. " P e r s o n a l Control over Aversive Stimuli and Its Relationship to Stress." Psychological Bulletin 80 (1973): 286-303. Benedict, R. "Continuities and Discontinuities in Cultural Conditioning." In Rethinking Childhood, edited by Arlene Skolnick, pp. 19-28. Toronto: Little, Brown, 1976. Bettelheim, Bruno. "Individual and Mass Behavior in Extreme Situations." In Readings in Social Psychology, edited by Eleanor Maccoby, Theodore Newcomb, and Eugene L. Hartley, pp. 300-312. New York; Holt, Rinehart and Winston, 1958. 153

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Beuf, Ann. Red Children in White America. Philadelphia: University of Pennsylvania Press, 1977. Blum, R. H. The Management of the Doctor-Patient Relationship. New York: Holt, Rinehart and Winston, 1960. Bowlby, J. Attachment and Loss. Vol. 2. New York: Basic Books, 1973. Carlton, W. In Our Professional Opinion: The Primacy of Clinical Judgment over Moral Choice. Notre Dame, Ind.: University of Notre Dame Press, 1978. Clark, B. (with the technical guidance of Lester Coleman, M.D.). Going to the Hospital. New York: Random House, n.d. Clark, K. A. Youth in the Ghetto: A Study of the Consequences of Powerlessness and a Blueprint for Change. New York: Haryou, 1964. Clarke, Ann M., and Clarke, A. D., eds. Early Experience: Myth and Evidence. New York: Free Press, 1977. Collier, James L. Danny Goes to the Hospital. New York: Grosset and Dunlap, 1970. Coopersmith, S. The Antecedents of Self Esteem. San Francisco: W. H. Freeman, 1967. Crandall, V. J.; Preston, A.; and Rabson, A. "Maternal Reactions and the Development of Independency and Achievement Behavior in Young Children." Child Development 31 (1960): 243-51. Daniels, M. J. "Affect and Its Control in the Medical Intern." American Journal of Sociology 61 (1960): 259-67. Denzin, N. " T h e Politics of Childhood." In Children and Their Caretakers, edited by N. Denzin, pp. 1-26. New Brunswick, N.J.: Transaction Press, 1973. Drietzel, H. P. Patterns of Communicative Behavior. Riverside, N.J.: Macmillan, 1970. Eissler, R. S.; Blom, G.; and Waldfogel, S. "Emotional Implications of Tonsillectomy and Adenoidectomy on

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Children." In The Psychoanalytic Study of the Child, edited by R. S. Eissler et al., pp. 126-69. New York: International University Press, 1952. Erikson, Erik H. Childhood and Society. 2d ed., rev. New York: Norton, 1964. Fox, Renée C. Experiment Perilous. Philadelphia: University of Pennsylvania Press, 1974. Freidson, Eliot. Doctoring Together. New York: Elsevier, 1975. . Professional Dominance. New York: Atherton, 1970. . Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York: Dodd, Mead, 1971. Freidson, Eliot, and Lorber, Judith, eds. Medical Men and Their Work. Chicago: Aldine, 1975. Gallagher, Eugene B., ed. The Doctor-Patient Relationship in the Changing Health Scene. DHEW Publication No. (NIH) 78-183. Washington, D.C.: U.S. Government Printing Office, 1978. Gill, Derek G. "Limitations upon Choice and Constraints over Decisionmaking in Doctor-Patient Exchanges." In The Doctor-Patient Relationship in the Changing Health Scene, edited by Eugene B. Gallagher, pp. 141-54. DHEW Publication No. (NIH) 78-183. Washington, D.C.: U.S. Government Printing Office, 1978. G o f f m a n , Erving. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Garden City, N.Y.: Doubleday Anchor Books, 1961. Goldstein, Joseph; Freud, A.; and Solnit, A. J. Beyond the Best Interests of the Child. New York: Free Press, 1973. Gordon, Gerald. Role Theory and Illness: A Sociological Perspective. New Haven: College and University Press, 1966. Gouldner, Alvin. "Anti-Minotaur: The Myth of Value Free Sociology." In Sociology: Introductory Readings in

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Mass, Class and Bureaucracy, edited by J. Bensman and B. Rosenberg, pp. 45-58. New York: Praeger, 1975. Hall, E. T. The Hidden Dimension. Garden City, N.Y.: Doubleday Anchor Books, 1966. . The Silent Language. Garden City, N.Y.: Doubleday Anchor Books, 1959. Holt, John. Escape from Childhood. New York: Ballantine Books, 1976. Hunt, David, Parents and Children in History: The Psychology of Family Life in Early Modern France. New York: Basic Books, 1970. Illich, Ivan. Medical Nemesis. New York: Pantheon, 1976. Kempe, H.; Silver, H.; and O'Brien, D. Current Pediatric Diagnosis and Treatment. Los Altos, Cal.: Lange Medical Publications, 1970; 3d ed., 1974. Kett, Joseph. " T h e History of Age Grouping in A m e r i c a . " In Rethinking Childhood, edited by Arlene Skolnick, pp. 214-34. Boston: Little, Brown, 1976. Klinzing, D. R.; Klinzing, Dene; and Schindler, Peter D. " A Preliminary Report of a Methodology to Assess the Communicative Interaction between Hospital Personnel and Hospitalized C h i l d r e n . " American Journal of Public Health 67 (1977): 670-71. Kohlberg, Lawrence. " A Cognitive-Development Analysis of Children's Sex Role Concepts and Attitudes." In The Development of Sex Differences, edited by E. Maccoby, pp. 82-173. Stanford, Cal.: Stanford University Press, 1966. Ladner, J. A. Tomorrow's Tomorrow: The Black Woman. Garden City, N.Y.: Doubleday, 1971. Lemert, E. "Juvenile Justice—Quest or Reality." In Children and Their Caretakers, edited by N. Denzin, pp. 257-86. New Brunswick, N.J.: Transaction Press, 1973. Lorber, Judith. " G o o d Patients and Problem Patients: Con-

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formity and Deviance in a General H o s p i t a l . " Journal of Health and Social Behavior 16 (1975): 213-25. McKinlay, John B. " T h e Changing Political and Economic Context of the Patient-Physician E n c o u n t e r . " In The Doctor-Patient Relationship in the Changing Health Scene, edited by Eugene B. Gallagher, pp. 155-88. D H E W Publication No. (NIH) 78-183. Washington, D.C.: U.S. Government Printing Office, 1978. Maccoby, Eleanor E.; Newcomb, Theodore; and Hartley, Eugene L. Readings in Social Psychology. New York: Holt, Rinehart and Winston, 1958. Mechanic, David. "Illness and Social Disability: Some Problems in Analysis." Pacific Sociology Review 2 (1959): 37-41. Mechanic, David, and Volklart, E. H. "Stress, Illness Behavior and the Sick Role." American Sociological Review 2 (1959): 51-58. Millman, Marcia. The Unkindest Cut of All: Life in the Backroom of Medicine. New York: William Morrow, 1977. Morel, E. Teddy Goes to the Doctor. New York: Grosset and Dunlap, 1973. Oakley, Ann. Sex, Gender and Society. New York: Harper Colophon Books, 1972. Outcult, Doug. " T h e Limits of Technical C a r e . " The New Physician 27 (1978): 55. Petrillo, M., and Sanger, S. The Emotional Care of Hospitalized Children: An Environmental Approach. Philadelphia: Lippincott, 1972. Parsons, Talcott. The Social System. New York: Free Press, 1966. Plumb, J. H. " T h e Great Change in Children." In Rethinking Childhood, edited by Arlene Skolnick, pp. 205-13. Boston: Little, Brown, 1976. Ross Roundtable. Child Advocacy and Pediatrics. Report of

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the Eighth Ross Roundtable on Critical Approaches to Common Pediatric Problems in Collaboration with the Ambulatory Pediatric Association. Columbus, Ohio: Ross Laboratories, 1978. Rossi, Alice S.; Kazan, Jerome; and Hareven, Tamara K., eds. The Family. New York: W. W. Norton, 1978. Roth, Julius. Timetables: Structuring the Passage of Time in Hospital Treatment and Other Careers. Indianapolis: Bobbs Merrill, 1963. Scahill, M. "Preparing Children for Procedures and Operations." Nursing Outlook 19 (1969): 36-38. Segall, Alexander. " T h e Sick Role Concept: Understanding Illness Behavior." Journal of Health and Social Behavior 17 (1976): 162-69. Seligman, M. E. Helplessness: On Depression, Development and Death. San Francisco: W. H. Freeman, 1975. Sisson, James C. "Negligence at the Bedside: Academic Malpractice." The New Physician 27 (1978): 35. Skolnick, Arlene. "The Myth of the Vulnerable Child." Psychology Today, February 1978, pp. 55-60, 65. , ed. Rethinking Childhood. Boston: Little, Brown, 1976. Sobal, Harriet L. Jeff's Hospital Book. New York: Henry Z. Walch, 1975. Straus, R. "Medical Education and the Doctor-Patient Relationship." In The Doctor-Patient Relationship in the Changing Health Scene, edited by Eugene B. Gallagher, pp. 413-22. DHEW Publication No. (NIH) 78-138. Washington, D.C.: U.S. Government Printing Office, 1978. Suran, Bernard, and Lavigne, John V. "Rights of Children in Pediatric Settings: A Survey of Attitudes." Pediatrics 60 (1977): 715-20. Vital Statistics of the United States. U.S. Bureau of Census.

159 Chevy Chase, Md.: U.S. Government Printing Office, 1973. Weber, A. Elizabeth Gets Well. New York: Thomas P. Crowell, 1969. Weber, Max. "Bureaucracy." In From Max Weber: Essays in Sociology, pp. 196-244. New York: Oxford University Press, 1958. . The Protestant Ethic and the Spirit of Capitalism. Translated by Talcott Parsons. New York: Charles Scribner's Sons, 1958. Wolde, Gunilla. Betsy and the Chicken Pox. New York: Random House, 1976.

index

admissions, 44-51; not shown on television, 37 age, 14, 15-16, 17-21, 121; and coping strategies, 72-73; and staff hierarchy, 92-94 Aries, Philippe, 2, 5, 119 Bagellardo, Paulo, 5 bias in sociological studies, 8-9 bill of rights for children in hospitals, 134-35 blame for condition, 14, 29, 40, 114-15; and children, 18-19, 114; and lifestyle, 19, 114-15; in books, 30 books: and socialization for patienting, 29-35, 40, 58-59; interaction of, with family response, 30; proposed, 138 bracelet, 51, 80-81 bureaucratization: of labor, 4; of medical practice, 41-43, 143

Child Life Program, 141-43 child psychology. See psychology childhood: American definition of, 2, 61, 113, 119-20, 136-37; cross-cultural studies of, 60-61, 119; history of, 2-7, 119; subcultural studies of, 60 children's hospital: advantages of, 91; as total institution, 15, 22-23, 41, 43, 58, 62, 67, 76, 86, 87, 113; goals of, 1, 2, 43, 55, 85-86, 87; origins of, 6; proposed changes in, 125-43; psychological perspective in, 107-10 class, 27, 73, 119, 120 cognitive development, 3, 77. See also symbolic literalism commercials, 38 consumer movement, 2, 134 Coopersmith, Stanley, 116-17

161

162 Index coping strategies: of children, 39, 67-82, 120-21; of staff, 85-110 cultural factors in coping strategies, 74-75. See also ethnicity Denzin, Norman, 50, 61, 119, 120 depression. See withdrawal developmental model of childhood, 6-7; and schools, 136 efficiency, 16, 42, 43, 56, 85, 86, 116, 129, 132, 143 embracing the sick role, 69-70 Erikson, Erik, 3 ethnicity, 27, 73-76, 119, 120 exemptions of sick role, 14, 18-21, 58, 59, 69-70, 113, 115; in books, 29-31, 58-59; on television, 37, 58-59. See also blame for condition family, 61-62; and exemptions of sick role, 37, 115, (see also filial role); economic role of, 5-6; in psychological theory, 108, 109-10; privatization of, 7; structure of, 27, 74, 136-37. See also parents fathers in books, 31. See also parents filial role, 19-20, 31, 40, 115 forced interaction, 53-54, 68, 69

Fox, Renée C., 95 Freidson, Eliot, 99-103 Freud, Sigmund, 3, 6, 105 Gill, Derek, 103 G o f f m a n , Erving, 22, 32, 40, 41, 44, 50, 59-60, 76-77, 78 gregarious host, 68-69 Hall, Edward, 74-75 helplessness: learned, 117-21, 133, 136; of children in American society, 1-2, 4, 7, 41, 50, 60-62, 113, 136-37; of children in hospitals, 41, 61-62, 74, 77, 80-81, 87, 103, 104, 109, 113, 133, 136; of adult inmates, 41-42, 59-60 hierarchy of hospital staff, 36, 55, 89, 91-94, 131 Holt, John, 120 humor: and rebellion, 80-81; and staff support system, 95-97; on television, 36-37 incompetence. See helplessness industrialization, 4, 119 inmates: role of, 40; treated like children, 41, 59-60. See also person-in-a-totalinstitution Johns Hopkins, 141-43 junior medical student, 70-71 Ladner, Joyce, 60 Lavigne, John V., 134-36 lifestyle as cause of illness, 19, 114-15

163

McKinlay, John, 41-43 Mead, G. H., 6 medical education, 43, 125-28. See also teaching rounds medical sociology, 13, 14, 113 mortification rituals, 40-41, 44-50, 58, 78, 115 mothers, 5, 74; in books, 31; in psychological theory, 109-10. See also parents. nurses: automony of, 91; educational level of, 91; in books, 32-33; in hospital hierarchy, 91-93, 102; interaction of, with patients, 86, 134; suggestions for training of, 128-30. See also hierarchy of hospital staff; staff, and support groups obligations of sick role: to cooperate in treatment, 21-22, 28, 31-32, 37, 40; to try to get well, 21, 28, 31, 37, 40 parents: and exemptions of sick role, 115; and proposed changes, 132-34; and socialization for patienting, 27-28, 40, 58-59; as seen by physicians and nurses, 74; as visitors, 20-21; in books, 30-31; psychological needs of, 4, 7, 20-21. See also family; filial role; mothers Parsons, Talcott, 13, 14, 15, 17, 19, 23, 58, 114

peers, 62; and socialization for patienting, 27-28; within the hospital, 82 person-in-a-total-institution, 15, 23, 27, 28, 32, 39-41, 58, 133 personality formation, 116-21 personal possessions, 77, 79, 133 physicians: and bill of rights for children in hospitals, 134-36; and bureaucratization of medical practice, 42-43, 143; and cultural traits of patients, 75; and emotional needs of children, 86, 98-99, 107, 125-28, 142-43; autonomy of, 90, 99-103; demands on, 55-56, 8 7 -89; in books, 32; interaction of, with other staff, 92-94, 102; on television, 35-36; prestige of, 107-8, 132; socialization of, 97-99; suggestions for training of, 125-28. See also hierarchy of hospital staff; staff, and support groups powerlessness. See helplessness privacy, 54, 68, 69, 117. See also forced interaction psychology: as social control, 90, 103-10; courses in, recommended for hospital personnel, 125-31; in children's books, 29, 34; of children, 6, 77, 79-80, 107-10

164 Index psychosomatic medicine, 114 race, 75-76, 120. See also ethnicity regimentation, 15, 16, 43, 54, 58, 60, 68, 86, 116; in books, 32; in schools, 39; on television, 35, 37 Rôslin, Eucharius, 6 school, 5, 6, 136; and socialization for patienting, 38-40, 59, 61-62 Segall, Alexander, 14 self-esteem, 74, 76, 115; formation of, 1-2, 116-17, 120 Seligman, Martin, 117-19 sex and coping strategies, 73 sick role, 13-15, 17, 58, 113, 114. See also blame for condition; exemptions of sick role; obligations of sick role Skolnick, Arlene, 119-20 specialization, 44, 142-43 staff: and bill of rights for children in hospitals, 134; and cultural traits of patients, 75-76; and family structure of patients, 74; and gallows humor, 95-97; and support groups, 90, 93-97;

coping strategies of, 85-110; educational level of, 91, 104; in books, 33-34; interaction of, with patients, 86-87, 121; on television, 35-37; proposed training for, 130-32; specialization of, 107, 142-43. See also hierarchy of hospital staff student role, 19, 20, 31, 38, 39 support groups. See staff, and support groups Suran, Bernard, 134-36 symbolic literalism, 76-80, 107 symbols, 67, 77-82 teaching hospital, 56-57, 91 teaching rounds, 56-58, 127, 128

television and socialization for patienting, 35-38, 40, 58-59 total institution: 1, 22, 26, 40-41, 44, 49, 50, 52-54, 59-63, 68, 143. See also children's hospital, as total institution; person-in-a-totalinstitution Weber, Max, 143 wild kid, 67-68 withdrawal, 71-72, 120-21