Stanford B. Friedman, M.D.
From the Departments of Pediatrics, and Psychiatry, University of Rochester, School of Medicine
and Dentistry, Rochester, New York
Support received from U. S. Public Health Service Grant #K-MH 18, 542 awarded by the National Institute of Mental Health.
This paper is to appear in expanded form In Green, M., and Haggerty, R., ed.: Ambulatory Pediatrics. Philadelphia: W. B. Saunders Co.
Care
of
the
Family
of
the
Child
with
Cancer
498
E
ACH parent of a fatally ill child must adjust, in his own way, first to the threatened loss and then to the actual deathof his child. The nature of this adjustment reflects, to varying degrees, the parent’s mode of coping with past crises, his
pre-vious experiences with illness and death, and the idiosyncratic meaning this particu-lar child may have to him. Thus, the physi-cian can be of most help to the parents if he is aware of important landmarks in the his-tory of the family and problems that they have had to face. His knowledge of pre-vious patterns of family behavior in times of stress can aid him in encouraging par-ents along lines that have been successful in the past and in supporting attempts to adapt to the present situation. For many parents, this may be their first personal ex-perience with death, and this may place
ad-ditional demands and requests upon the
physician.
Unfortunately, such family history is usu-ally not available to the physician who ulti-mately assumes the care of a fatally ill child. Furthermore, it is often difficult, and inadvisable, to obtain such information in
detail at the time parents are preoccupied with an acute crisis. It therefore is useful for physicians to realize that there are many
problems these parents face in common, and a number of studies1-5 have described more or less characteristic ways of reacting
to them. This does not imply that stereo-type behavior will be observed in parents sharing this common experience. However, if the physician is consciously aware of
common modes of adjustment used by par-ents, he will be in the position of
antici-pating some of their needs, problems, and
sources of anxiety. Perhaps in no other area of pediatrics is the concept of “antici-patory guidance” so successful or so fruitful in promoting rapport between the physi-cian and the parents of his patient.
COPING BEHAVIOR
It is noteworthy that the vast majority of parents are able to adapt, albeit painfully, to the loss of a child. Persistent psycholog-ical decompensation or psychiatric illness rarely appears to be precipitated by such an event, and it is, therefore, useful to ex-amine some of the mechanisms parents use
to maintain a relatively acceptable level of functioning. Some authors have included all such adaptive mechanisms under the term coping behavior, which refers to the tradi-tional psychoanalytical defenses such as denial and projection and also encom-passes any social or motor behavior which serves the function of aiding the individual in dealing with environmental stress. Suc-cessful coping behavior, then, protects the parent of a fatally ill child from being over-whelmed, enabling him to effectively
func-tion as a parent. At times, however, the threat to the parent is so extreme, relative to his resources to cope, that he must
re-sort to a pattern of behavior that interferes with his ability to realistically help in the
care of his child.
SUPPLEMENT 499
discuss any aspect of the disease with the patient. Increasingly, Mr. B. questioned the necessity of medical procedures and therapy, maintaining that his boy was getting better and that the diagnosis was in error. This eventually led to Mr. B.’s in-sisting that his boy be discharged.
This vignette illustrates how coping or
defense behavior-in this case denial-not
only may protect the parent from being overwhelmed, but also contributes to the
parent’s inability to understand and
partici-pate in the medical and psychological
man-agement of his child. This is not to say that such coping behavior is entirely detrimen-tal, for it did replace an even more chaotic state in the father; namely, ego disintegra-tion. Thus, one must judge coping behavior in two ways: (1) its function in protecting the individual parent from overwhelming environmental and psychological stress, and (2) its function in permitting the parent to effectively function in the overall medical
and psychological care of his child. Both functions are usually achieved but the bal-ance is a dynamic one, and transient epi-sodes, less extreme but similar to the prob-lem illustrated in the foregoing case, are not uncommon to the physician caring for
fatally ill children.
The course of a fatal illness defines to a
great extent the exact problems parents
may have in caring for their child. It has been found that parents, as well as the child, change a great deal as the disease progresses. The problems during the
diag-nostic work-up are different from the task
of caring for the child during his terminal
phase, and parents must use different resources and patterns of executing their
parental roles.
Increasingly, parents are suspecting the
seriousness of the diagnosis even prior to
learning of it from the physician. This prob-ably reflects the relative sophistication of the general population regarding medical matters, particularly about diseases that are associated with various fund drives. One of
the implications of this trend is that parents are apt to be ever-vigilant in observing the doctors and nurses for clues that might
confirm their worst fears. The words,
malig-nant disease, may become the “unspoken
secret” of the physician, nurses, and par-ents; each knowing that it is being consid-ered but avoiding any discussion of the possibility. Though it is unwise for the phy-sician to discuss the grave diagnostic possi-bilities with parents as a matter of routine, he should be available to the parents if they
wish to confront him with their fears.
Under such circumstances, it is an impor-tant first step in demonstrating to the par-ents that the physician is willing to answer
all questions that they may have. Physi-cians, consciously or unconsciously, may wish to avoid such a confrontation until the
definitive diagnostic tests are completed, and this is frequently and correctly per-ceived by parents as a deliberate attempt of the doctor to avoid them. This further in-creases parental anxiety, sometimes provokes anger, and interferes with an honest and
direct parent-doctor relationship.
PRESENTING THE DIAGNOSIS
Telling the parents the diagnosis is difficult, at best. However, making the dis-cussion public, such as talking to parents on a busy hospital ward, may add to the par-ents’ distress, and also interfere with the physician’s own composure. Furthermore, the parents may realistically fear that their
child will overhear such a conference. Pri-vacy at this time allows the parents to re-spond and support each other in ways that might be repressed in a more public set-ting. The physician should give his full at-tention to talking to the parents, and inter-ruptions of any sort should be avoided if at all possible. Lastly, the physician should have sufficient medical knowledge of the disease under discussion, so that what in-formation he decides to communicate to the
parents does not later contribute to possible confusion and doubts regarding his compe-tence.
500
large medical centers for treatment, and it is all the more painful for parents if they have been led to believe that at the medical
center the diagnosis might be changed. The
installation of such “false hope” usually reflects the referring physician dealing with his own anxiety, rather than his attempt to help the parents. Parents have referred to such a sequence of events as having to ex-perience the learning of the diagnosis
twice, instead of once.
It is probably impossible for parents to
fully comprehend and feel the total impact
of having a child with a fatal illness at the
time they learn the diagnosis. Such a phe-nomenon would lead to psychological dis-integration, and thus leave the parent
un-able to effectively care for the ill child and
make the necessary decisions surrounding
this crisis. Thus, most parents are able to control to some degree the expression of their despair. Parents may even appear rel-atively unmoved and this erroneously has
been interpreted as a lack of affection
to-wards their child. Typically, parents look
back upon the experiences with the recol-lection that it took several days or weeks for it “to really hit us.”
Parents may ask few or many questions, but almost all ask, “How long will Johnny live?” There is no clear agreement on how this should be answered, but, in general, it
is unwise to estimate the child’s survival time. Parents are often angered by physi-cians giving such precise predictions, be-lieving, for intellectual or religious reasons, that such powers are beyond those of the doctor. However, the physician should be very specific and detailed in answering questions about the immediate future and plans that have to be made. Parents need
help in areas that normally they could han-dle well: Should the child be transferred to another hospital? Should the parents stay overnight in the hospital? Who might care for the other children? Parents also may ask whether the disease could have been pre-vented, what drugs are available, and other questions related to management. In gener-al, it is best to keep the answers simple,
though not vague, as experience has shown that little of this type of information is re-tained when given at this time. This is in spite of the fact that the same question may be asked over and over again, and reflects not so much a search for information, but a method of testing the reality of the situa-tion at a time of intense stress.
REACTIONS TO DIAGNOSIS
It has been stated many times that
par-ents of fatally ill children feel guilty about
their possible role in causing their child’s disease. Such statements are based on the
almost universal questioning by parents of whether there could have been anything they did, or did not do, that led to this dis-ease in their child. However, in most
par-ents such self-reproach is part of a general attempt to understand the causation of the disease, and they also ask about the
possi-ble etiologic role of environmental factors, such as increased atmospheric radiation,
contamination of foods by insecticides, or exposure to viral agents. Such questions reflect, in part, issues currently covered in the lay press, but, more importantly, the parent’s search for some meaning or under-standing of what has happened. That the parent includes himself in this overall search for why his child was striken is ac-tually quite logical, and it may be in error to view this phenomenon as primarily one of guilt. However, most parents can be reassured that, as far as medical science is aware, their child’s illness was entirely
be-yond their control. If, over a period of weeks, a parent continues to blame him-self and appears preoccupied with such thoughts, the physician should recognize
that this may represent some degree of psy-chopathology. The strong persistence of guilt feelings can only be explained by un-derstanding the parent’s previous psycho-logical adjustment, and the physician may wish to enlist the aid of a psychiatric con-sultant in such cases.
SUPPLEMENT 501
may reflect itself as a bitterness directed towards the world in general. However,
parents who act out their hostility or who are preoccupied with such thoughts as blowing up the world usually are paranoid individuals whose previous
psychologi-cal adjustment is now severely strained. Though uncommon, such a pattern
ob-served early in the child’s illness may also warrant the physician’s discussing the prob-lem with a colleague in psychiatry, as the situation usually gets worse when the child
becomes terminally ill.
The doctor who has told the parents the diagnosis is frequently the target for their
hostility, but he should not prematurely judge his subsequent relationship with the family. Interestingly, the parents may later feel extremely close to this same physician. It is as if they have shared something
significant together and therefore have cer-tain common bonds. Parents may have feared “falling to pieces” or having a “ner-vous breakdown,” and their success in maintaining emotional integrity later may be attributed to this physician.
Parents may seek widely for information regarding their child’s illness. Searching through newspapers and magazines for such information is extremely common, and
parents also may look up material in medi-cal textbooks if they are available to them.
More often than not, the parents are not
questioning the physician’s ability to treat their child but are using an intellectual un-derstanding of the disease to help them
deal with the overall problem. Some under-standing of the disease is less frightening than ignorance and the unknown. The dis-ease process should be explained in terms appropriate to the intelligence and sophisti-cation of the parents, but the physician should reserve the right not to share all his medical knowledge with them. For
in-stance, it is generally unwise to interpret the full medical implications of a falling white count in a child with leukemia, as most parents are not in the position to com-prehend the many medical complexities and may inappropriately attempt to enter
into the therapeutic decisions. At times, pamphlets#{176} may be of some help in com-municating medical information to parents, but this should only supplement, not re-place, the physician’s role in this area.
COURSE OF THE ILLNESS
Many children with a fatal disease do not appear particularly ill to their parents at
the time they are diagnosed. Often, as with childhood leukemia, there is prompt remis-sion which supports any existing parental denial of the seriousness of the illness.
Rel-atives and friends may futher reinforce this by pointing out that the child looks too well to be sick or by recalling instances of mis-taken diagnoses. The physician can be of great help in such instances by anticipating this and explaining that it is natural for
them to find it difficult to believe the diag-nosis when their child appears so well. This
type of counselling aids the parents in their dealings with relatives and friends and often helps them in resisting the advice to seek medical opinion and management
from some other source.
Where the child appears well for a rela-tively long period, the first medical relapse for the child may, in a sense, represent the first time his parents are confronted with
the reality of the situation. Thus, they may react as if this was the first time they had learned of their child’s condition. In cases of leukemia where a second remission is likely, the physicians and nurses may be puzzled by the degree of parental distress and concern, not realizing that the parents
are in large part responding to acceptance of the diagnosis and not merely to the cur-rent medical situation. The physician may, therefore, wish to re-discuss the total prob-lem with the parents, almost as if the diag-nosis had just been made.
The stress of such a medical relapse to parents, relating it to what already has been said about coping mechanisms, is
il-*Such a publication is “Childhood Leukemia: A Pamphlet for Parents,” available from the
Re-search Information Branch, National Cancer
5
3
3.
0
Father Mother
--Q
DeaThsi Word
-4
Exper.Drug Fungu Infection ‘ChiwucMean
-_HI
1clh of Child
I0
N= Collection Days
hivnii
Meci’
:
______
3;;EIU
51MONTH IN STUDY
FIG. 1. Urinary 17-hvdroxycorticosteroid excretion rates in the parents of a child with leukemia
observed over an 8-month period. The period of observation was interrupted by two 1-month interludes
when the child was well enough to return home. N = number of days of urine collection for 17-OHCS
determination 6
I 2 3-4 5
502
C,) 0
I(f)
N-O
-I
ZE
lustrated in Figure 1. These parents were
participants in a study at the National In-stitutes of Health in which the
psycholog-ical adjustment of pareits of children with
leukemia was studied in association with their adrenal cortical secretion rates.6 The 17-hydroxycorticosteroid levels have been correlated with psychological stress; but,
more importantly for this discussion, the highest elevations are generally observed in
individuals judged to be ineffective in their coping behavior, it can be noted that the
highest adrenal steroid value for this partic-ular mother and father was during the days
the child was in obvious relapse. As will be discussed later, even the child’s actual death did not result in such a rise in 17-hydroxycorticosteroid excretion rate.
Initially, parents may wish to stay with
their child day and night. Mothers in par-ticular are helped in their own adjustment if they can participate in their child’s care-not totally lose him to the physicians and nurses. The ward personnel may, with the
best of intention, urge a mother to spend less time with her ill child, thinking of her own health and the care of her other
chil-dren. However, it is important to remember that it may be psychologically important to a mother to make these sacrifices, and, therefore, forcing her to return home for whatever reason may add to her distress
and any existing feelings of guilt. In advis-ing parents as to how long they should visit,
par-SUPPLEMENT 503
ents may need help. Parents often are re-luctant to acknowledge how their child is feeling, believing that they should constant-ly cheer him up. Telling a child, “You look great,” when he knows this is not true may
destroy his previous unconditional trust in
his parents and increase his anxieties. Also, parents may be confused by their child’s expression of anger towards them, not
real-izing that this is common in young children who do not understand why their parents
cannot ease their pain and make them well.
ANTICIPATORY GRIEF
Grieving in most parents begins long
be-fore the child dies. This anticipatory grief is not dissimilar to the behavior observed in
individuals actually experiencing the loss of
a loved one,7 but is diluted by a longer
span of time. As viewed on the ward,
antici-patory grief may be reflected by some
de-gree of emotional detachment from the child. One mother described this by saying: “I love him as much, but we are more sepa-rate.” There often is a renewed interest in
old family pastimes, in the other children, and in family affairs. The parents’ hopes,
like those of the child, become more limited and there are fewer questions about any-thing but the immediate future. Parents
110W may begin to spend increasing
amounts of time with other children on the ward, even at the time their own child may be critically ill. This type of behavior is often disturbing to the medical and nursing staffs, who misinterpret what is occurring. Yet, acceptance of these manifestations of
grieving may significantly support the par-ents and, during the terminal phase, allow them to verbalize their feelings about their child’s nearing death. In such a setting,
par-ents may be able to express the thought
that perhaps it will be best for the child’s suffering to cease.
“It was but the final step,” is how one parent described the death of her child. If anticipatory grieving has taken place, most parents have prepared themselves for this terminal event and, to some degree, have rehearsed how they will act. Unlike parents
of children who have unexpectedly died, parents of children with prolonged illness usually have control over their expression
of grief. In contrast, those few parents who have denied the seriousness of their child’s illness right up until his death cannot main-tain such control and must, in a sense, ex-perience their loss all at once. It has been
further noted that this difficulty in ac-cepting the loss is often associated with prolonged grieving, and even many months
after the child’s death this group of parents may find it impossible to talk about the de-ceased child without experiencing
consider-able distress.
It is usually overlooked that the physi-cian can be of significant help to parents some months after the death of their child.S Many of the earlier expressions of guilt and questions related to whether optimal care was given to their child now reappear in a large proportion of parents. In this author’s experience, the vast majority of parents welcome the opportunity to re-discuss many of these issues, as well as be reas-sured that the autopsy findings confirm that the diagnosis was indeed correct. Parents have described such conferences as
“put-ting a period on the whole episode,” and thus reinforcing their efforts to return to their previous mode of living.
REFERENCES
1. Friedman, S. B., Chodoff, P., Mason, J. W., and Hamburg, D. A.: Behavioral observa-tions on parents anticipating the death of
a child. PEDIATRICS, 32:610, 1963.
2. Bozeman, M. F., Orbach, C. E., and Suther-land, A. M.: Psychological impact of cancer and its treatment, III. The adaptation of mothers to the threatened loss of their chil-dren through leukeniia: Part I. Cancer, 8:1,
1955.
3. Orbach, C. E., Sutherland, A. M., and Boze-man, M. F.: Psychological impact of cancer and its treatment, III. The adaptation of mothers to the threatened loss of their chil-dren through leukemia, Part II. Cancer, 8:20, 1955.
4. Hamovitch, M. B.: The Parent and the Fatally
Ill Child. Los Angeles: Delmar Publishing Company, Inc., 1964.
Psy-chological aspects of management of
chil-dren with malignant diseases. Amer. J. Dis.
Child., 89:42, 1955.
6. Friedman, S. B., Mason, J. W., and Hamburg,
D. A.: Urinary 17-hydroxycorticosteroid
levels in parents of children with neoplastic
disease: A study of chronic psychological
stress. Psychosom. Med., 25:364, 1963.
7. Lindemann, E.: Symptomatology and
manage-ment of acute grief. Amer. J. Psychiat., 101:
141, 1944.
8. Williams, H.: On a teaching hospital’s responsi-bility to counsel parents concerning their child’s death. Med. J. Aust., 2:643, 1963.
DISCUSSION
DR. RIchARD OLMSTED: I would like to
ask both Dr. Green and Dr. Friedman about the matter of the child being in the hospital as opposed to being at home. What effect does this have on tile child, and,
con-versely perhaps, what effect does it have on
the parents who are keeping a child who may be close to being terminal at home? Very often we adopt the philosophy that it
is better for the child to be at home, but I
am sure this creates difficulties for parents
at times.
DR. Monms GRERN: We usually assume in
this country that terminal care can best be
handled in the hospital; however, in recent years we have questioned this concept, and
now we like to have as much of this care occur at home as is practicable. In order to do this effectively, however, we should pro-vide the family with supportive services from the hospital, a type of home care pro-gram involving the physician, the social worker, and the nurse. With some of our recent patients tile nurse has been present
in the home at the time of death and has made visits frequently before that time. The hospital physician has also been there. We do not have sufficient data on this, but I think there are many things to be said in
its favor. As we are now examining other
aspects of hospital care of children, we should also examine this method of
termi-nal care. Is it best for the child to be in the
hospital at this time or can he be cared for better at home with supplementary services
from the hospital? Certainly I think this is an area in which the personal physician of the family needs to have some support from
the community oriented hospital.
DR. ABRAHAM BERGMAN: Dr. Friedman?
DR. STANFORD FRIEDMAN: Rather than
underline what Dr. Green has just said, I would like to pick out one issue, that of
in-stitutional rigidity. Too often, I believe, we
look at either the child being in the hospital
or at home. Increasingly, many centers are allowing children to go home for after-noons, for week-ends, and things of this sort.
Thus, there is support from the medical point of view, from the hospital, and psychological support from allowing the child to participate in some of his usual ac-tivities. I would hope that this will become increasingly easy to do.
DR. BERGMAN: May I ask one of the hematologists to comment on this question? Dr. Borges?
DR. WAYNE B0RGE5: As pediatricians, we avoid hospitalization unless there are cer-tain techniques required for the care of the child that could be only achieved in the in-patient setting, recognizing fully that cer-tain geographic considerations may alter this. The child who lives around the corner is a much different problem than the one who is referred from 400 miles away. This isn’t saying much more than that we have to individualize, but the child ordinarily does better in the home situation than in the very tumultuous inpatient situation.
DR. SANFORD LEIKIN: If given the oppor-tunity is it wise to plant the seeds of the
diagnosis, before presenting it absolutely,
if this can be controlled? Or, is it better to try to abruptly present the family with the
diagnosis?
DR. GREEN: I think the diagnosis should be conveyed promptly. Parents are ex-tremely upset, in my experience, if they