ANXIETY IN THE DYING CHILD

(1)

ANXIETY

IN THE

DYING

CHILD

John J. Spinetta, Ph.D., David Rigler, Ph.D., and Myron Karon, M.D.

From California State University, San Diego, and the Children’s Hospital of Los Angeles

ABSTRACT. Twenty-five leukemic children aged 6 to 10 years related significantly more stories that

contained elements of preoccupation with threat

to their body integrity and functioning than did 25 control children with nonfatal chronic illnesses. Although they made no overt reference to the con-cept of death, the children with fatal illness

showed an awareness of intrusion into their body integrity and functioning, and expressed a greater

degree of both hospital-related and nonhospital-related anxiety than did the children in the con-trol sample.

The fatally ill child of 6 to 10 years appears to be aware of the seriousness of his illness, even

though he may not yet be capable of talking about this awareness in adult terms.

Pediatrics, 52:841, 1973, ANXIETY, DEATH, DYING CHILD, LEUKEMIA.

Despite efforts to shield children with

fatal illness from awareness of their

prog-nosis, it has been claimed that the anxiety

of well-meaning adults is conveyed to the

children through the altered emotional

climate around them.’ How true is this?

How anxious is a young child with a fatal

illness, specifically a child with leukemia?

The present study is an attempt to answer

this question with quantified measures.

Previous studies, reviewed by Spinetta,2

indicate the concern of authors for the

par-ents, nurses, and physicians dealing with

the child,1’ 3h1 but few or no objectively

based data have been gathered from the

younger child himself on what he knows

about his illness or what his psychological reactions are to it. Worse still, unsupported

positions and opinions have been stated

as objective fact.121

The question of whether or not there are

any psychological accompaniments of fatal

illness is particularly unsettled in the child

6 to 10 years of age. According to

Scho-walter,17 in this age period the concept of

terminal illness first makes its impact on

the dying child and death anxiety may then

be greatest because death is still so poorly

understood at this age.

Most studies seem to agree that the child

over 10 can be aware of and anxious about

his impending death, whether he is told

directly about his illness or is kept from

open communication about it for whatever

intention of those around him.’10’ 18-21 For

the fatally ill child under 5, anxiety takes

the form of separation anxiety, fear of

abandonment, and loneliness. Many

inves-tigators who approach the subject from the

conceptual level conclude that the fatally

ill child from 6 to 10 years of age lacks

sufficient intellectual ability to formulate a

concept of death and, therefore, is not

aware of what impends. Others, more

at-tuned to the child’s emotional state, draw

equally strong conclusions that many

fat-ally ill children of 6 to 10 years, if not

conceiving of their own impending death,

are aware at least that something very seri-ous is happening to them.

Investigators with these two views relied

for the most part on interviews with the

parents or on observation of the children,

until Waechter recently used the

interpre-tation of pictures to elicit indirect and

fantasy expression of fatally ill children’s

concern regarding present and future body

integrity and functioning.22’ 23 In four

other-(Received March 27; revision accepted for publication July 17, 1973.)

Supported in part by a Doctoral Training Fellowship awarded to the Principal Author (NIH U.S.

Public Health Service Clinical Training grant CA 8128-05).

ADDRESS FOR REPRINTS: (J.J.S.) Department of Psychology, California State University, San

Diego, California 92115.

(2)

wise matched groups from the controversial 6- to 10-year-old age level (fatally ill chil-dren, children with nonfatal chronic illness,

children with brief illness, and normal

non-hospitalized children), Waechter found a

higher degree of overtly expressed death

themes and concerns than of mutilation or

separation concerns among the fatally ill.

She measured objectively a higher degree

of concern with intrusion into body

in-tegrity and functioning in her fatal group

than in any of the three others. This

strongly suggests that children aged 6 to

10 not only can be aware that they are

dying, but also can express that awareness

by actual and overt use of words relating

to death.

The present study of 6- to 10-year-old

fatally ill children attempts to clarify the

issue of overt expression of death concerns. It was predicted (a) that anxiety, though

not an overt expression of death, would, if

present, be real, measurable, and very

much related to the seriousness and fatality

of the illness experienced; and (b) that

from awareness of the seriousness of their

illness, fatally ill children, without

mention-ing death overtly, would show a much

greater preoccupation with threat to body

integrity and functioning, and a greater

overall anxiety relative both to the hospital

and to nonhospital-related situations than

would a control group of hospitalized

children.

Subjects

METHOD

A battery of tests was administered to

50 children from 6 to 10 years of age, all

hospitalized on the same ward of Childrens

Hospital of Los Angeles between May 1971

and February 1972. Parental permission

was obtained in writing before each child

was tested and parents were very

coopera-tive and willing to allow their child to

participate in the study. Of the 50 children

25 were hospitalized with a diagnosis of

leukemia, while the remaining 25 were

children with chronic but nonfatal illnesses, matched to the fatally ill in age, sex, race,

and grade in school. The children also were

matched as closely as possible in terms of

seriousness and amount of medical

inter-vention, as well as number of times in the

hospital. Of the 25 children in each of the

two groups, 9 were newly diagnosed while

16 were in the hospital for a subsequent

admission for the same illness. Procedure

The study consisted of three parts given

in the following order:

1. Pictures (PIX): A set of four pictures of hospital scenes was shown individually

and in the same order to each child in the

study. Stories were requested in an attempt

to elicit indirect and fantasy expressions of

the child’s concern regarding present and

future body integrity and functioning, in

the manner used by Waechter in her study.

2. Objective Test, Three-Dimensional

(3D):

A three-dimensional replica of a

hos-pita! room at Childrens Hospital of Los

Angeles was specially designed for the

study in a further attempt to elicit indirect

and fantasy expressions of the child’s

con-cern regarding present and future body

integrity and functioning. Magnetized dolls

representing significant figures in the

child’s life

(

mother, father, doctor,

nurse-all of appropriate race

)

were given to the

child to place in the room. The child was

asked to tell stories about each of the dolls as he placed them in the room.#{176}

3. Hospital-Anxiety (HOSP) and

Home-Anxiety (HOME): The 40 questions of the

two-part questionnaire were adapted from

the State-Trait Anxiety Inventory for

Chil-dren

(

STAIC

)

of Spielberger.24 Each child

was asked to respond to the State Anxiety

questions regarding his feelings while in

the hospital and to respond to the Trait

Anxiety questions regarding his feelings

while not in the hospital.

The entire protocol was administered in

one sitting lasting from 20 to 30 minutes

0 Throughout the protocol, a personal space measure was taken of the distance of placement of each of the adult figures from the sick child in the

(3)

Source df MS

PIX

F MS

3D

F MS

HOSP

F MS

HOME

F

Regression 2 135.5 6.35t 71.7 4.26 3.1 0.10 248.6 7.Olt

L

Leuk/Non-Leuk 1 614.8 28.82 547.4 32.53 1239.4 39.83 300.4 8.47t

V

First/Subsequent 1 7.1 0.33 1.5 0.09 95.9 3.08 3.3 0.09

LXV 1 8.2 0.38 0.9 0.05 160.1 5.15 1.2 0.03

Error 44 21.3 16.8 . . . 31.1 . . . 35.3 . .

0 Compared to the nonleukemic control group, the leukemic children told significantly more anxiety-filled

stories relating to PIX (p <0.001 ) and to 3D (p <0.001 ), and exhibited Significantly greater hospital-related

(p <0.001 )and nonhospital-related (p <0.01) anxiety.

tp<O.Ol.

1:p<O.OS.

§

p <0.001. 843

TABLE I

ANALYSES OF VARIANCE FOR THE DEPENDENT MEASURES*

to each of the children individually by the

same examiner. The use of a separate

test-ing room was designed to eliminate at least

the gross effects of medication, for the

children would refuse to leave their room

to come and “play the games” when they

were feeling tired, depressed, or listless. All

of the stories in parts 1 and 2 were

re-corded on tape and later transcribed and

scored. No time limit was set for the child

in any portion of the story telling and, other than prescribed instructions, no prompting

was given. The scoring system used in parts

1 and 2 was based on that adapted by

Waechter from McClelland et al.2

RESULTS

A multivariate analysis of variance for

the scores was performed, and the results

are summarized in Table I. The cell means

for the four measures are summarized in

Table II.

The scores for the four measures were

covaried for age and grade in school. The

age and grade made a significant difference in the scores (regression analysis p<O.O2l).

The main hypothesis was supported by the

four measures of anxiety taken as a whole.

That children 6 to 10 years of age with

a fatal prognosis would relate stories

mdi-cating significantly greater preoccupation with threat to body integrity and

function-ing, and would exhibit a significantly

greater anxiety both in hospital-related and

non-hospital-related questions, than the

control group of chronically ill children,

was supported by an F of 21.32, p<O.OO1. In their story telling, none of the children

made overt references to the concept of

death.

The fatally ill children both at initial

TABLE II

CELL MEANS FOR DEPENDENT MEASURES OF ANXIETY IN TOTAL SCORED ITEMS

Leukemic

1st Subsequent

Admission Admissions

Chronic

1st Subsequent

Admission Admissions

PIX 10.67 10.25 2.44 3.81

3D 9.11 8.94 2.00 2.44

HOSP 23.33 16.75 8.33 9.19

(4)

THE DYING CHILD

hospital entry and at their subsequent

re-admissions related stories in response to

PIX that showed a greater preoccupation

with threat to their body integrity and

functioning than did the control group

(

F=28.82, p <0.001

) (

Table 1

)

. Similarly,

in response to the 3-D test, the F of 32.53

indicated a probability of p<O.OOl. Table

I further shows F of 39.83 (p<O.OOl) for

anxiety related to hospital situations and

of 8.47 for feelings when not in the

hos-pital but while at home (HOME scale)

(p<O.006).

DISCUSSION

If, as the parents of the 25 leukemic

children maintained, their child did not

know that his illness was fatal, and if the

chronically ill children generally received

the same number and duration of

hospital-related treatments, there should have been

little or no difference between the scores of

the fatally ill children and the scores of the

otherwise chronically ill. But the greater

anxiety and preoccupation with threat to

body integrity and functioning of the

fatally ill, present even at the first

admis-sion to the hospital and carrying over into

the home, indicates, despite efforts to keep

the child with leukemia from becoming

aware of his prognosis, that he somehow

picks up a sense that his illness is very

serious and very threatening. The fatally

ill child is aware that his is no ordinary

illness.

It seems clear both from the present

study and from the Waechter study,22’23

the two rigorously designed studies on the

issue, that even though the concern of the

6- to 10-year-old leukemic child may not

take the form of overt expression about

death, the more subtle fears and anxieties

are nonetheless real, painful, and very

much related to the seriousness of the

ill-ness. Whether or not one wishes to call

this nonconceptual anxiety about the child’s

own fatal illness “death anxiety” seems to

be a problem of semantics rather than of

fact. To equate awareness of death with

the ability to conceptualize it and express

the concept in an adult manner denies the

possibility of an awareness of death at a

less cognitive level. If it is true that the

perception of death can be engraved at

some level that precedes a child’s ability

to talk about it, then a child might well

understand that he is going to die long

before he can say so.

REFERENCES

1. Binger, C. M., Ablin, A. R., Feuerstein, R. C.,

et a!. : Childhood leukemia: Emotional

im-pact on patient and family. New Eng. J.

Med., 280:414, 1969.

2. Spinetta, j. j. : Death Anxiety in Leukemic

Children. (doctoral dissertation, University

of Southern California) Ann Arbor, Mich.:

University Microfilms, 1972.

3. Easson, W. M. : The Dying Child: The Man-agement of the Child or Adolescent Who is

Dying. Springfield, Ill. : Charles C. Thomas,

Publisher, 1970.

4. Yudkin, S.: Children and death. Lancet, 1:37, 1967.

5. Kliman, C.: Psychological Emergencies of Childhood. New York: Grune & Stratton, Inc., 1968, pp. 26-43.

6. Richmond, J. B., and Waisman, H. A. :

Psy-chological aspects of management of

chil-dren with malignant diseases. Amer. J. Dis. Child., 89:42, 1955.

7. Knudson, A. G., and Natterson, J. M.: Par-ticipation of parents in the hospital care of their fatally ill children. Pediatrics, 26:482, 1960.

8. Natterson, J., and Knudson, A. : Observations

concerning fear of death in fatally ill

chil-dren and their mothers. Psychosom. Med.,

22:456, 1960.

9. Morrissey, J. R.: A note on interviews with

children facing imminent death. Social Case-work, 44:343, 1963.

10. Morrissey, J. R.: Children’s adaptations to fatal illness. Social Work, 8(4) :81, 1963.

11. Friedman, S. B., Chodoff, P., Mason, J. W., and Hamburg, D. A.: Behavioral

observa-tion in parents anticipating the death of a

child. Pediatrics, 32:610, 1963.

12. Howell, D. A.: A child dies. Hosp. Top., 45(2):93, 1967.

13. Evans, A. E., and Edin, S.: If a child must die. New Eng. J. Med., 278:138, 1968. 14. Editorial: The dying child. Med. J. Aust.,

1:1011, 1968.

15. Debuskey, M.: Orchestration of care. IN

(5)

DR. GEORGE ARMSTRONG WRITES ABOUT THE DISINTEREST OF PHYSICIANS IN THE CARE OF SICK CHILDREN

845

16. Sigler, A. T. : The leukemic child and his

fam-ily: An emotional challenge. IN Debuskey,

NI.

(

ed. ): The Chronically Ill Child and

His Family. Springfield, Ill.: Charles C. Thomas, Publisher, 1970.

17. Schowalter, J. E.: The child’s reaction to his own terminal illness. IN Schoenberger, B.,

Carr, A., Peretz, D., et al. (eds.): Loss and

Grief: Psychological Management in

Medi-cal Practice. New York: Columbia Univer-sity Press, 1970.

18. Furman, R. A.: Death and the young child:

Some preliminary considerations.

Psycho-anal. Stud. Child., 19:321, 1964.

19. Maurer, A.: Maturational concepts of death.

Brit. J. Med. Psycho!., 39:35, 1966. 20. Von Hug-Hellmuth, H.: The child’s concept

of death. Psychoana!. Quart., 34:499, 1965. 21. Vernick, j., and Karon, M.: Who’s afraid of

death on a leukemia ward? Amer. J. Dis. Child, 109:393, 1965.

22. Waechter, E. H. : Death Anxiety in Children with Fatal Illness (Doctoral dissertation,

Stanford University). Ann Arbor, Mich.:

University Microfilms, 1968.

23. Waechter, E. H.: Children’s awareness of fatal illness. Amer. J. Nurs., 71:1168, 1971.

24. Spielberger, C. D., Edwards, E. D., Montuori, J., et al.: Children’s State-Trait Anxiety

In-ventory. Palo Alto, California: Consulting Psychologist Press, 1972.

25. McC!elland, D. C., Atkinson, J. W., Clark, R. A., et al.: A scoring manual for the achievement motive. IN Atkinson, J. W. (ed): Motives in Fantasy, Action and

Society: A Method of Assessment and

Study. Princeton, New Jersey: D. Van

Nostrand Co., Inc., 1958.

Dr. George Armstrong (1719-1789) , one of

the first of the English physicians to devote his time entirely to the care of children, and the originator of the first dispensary for sick

chil-dren in the English speaking world, had this to say about the lack of concern of physicians

of his day in the care of children:

If we take a survey of the different provinces

of medicine, we shall readily discover, that one

which happens to be of the greatest consequence to society, as the population of every country in

a great measure depends upon it, I mean that which regards the diseases of infants, has hitherto

lain uncultivated. I do not pretend to account for

this strange neglect, nor is it to my purpose: but certain it is, that though the human species can

only be preserved by taking proper care of the infant race, which is much more helpless than

the young of other animals; and though a much greater number of our species in proportion to

the whole, than of any that we know, dies very

young; yet the care of infants, even with regard

to medicine, has commonly been left to old

women, nurses, and midwives, so that it has long been a common saying in this country, that the best doctor for a child, is an old woman. . .

I know there are some of the physical tribe who are not fond of practicing among infants; and I have heard an eminent physician say, that he never wished to be called in to a young child; because he was really at a loss to know what to order for it. Nay, I am told, there are physicians of note here, who make no scruple to assert, that there is nothing to be done for chil-dren when they are ill. (This I am told, was the doctrine of the late Dr. Hunter, who, though a great anatomist, was not adept in physic.)’

NOTED BY T. E. C., JR., M.D.

REFERENCE

(6)

1973;52;841

Pediatrics

John J. Spinetta, David Rigler and Myron Karon