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
have not been told. As soon as you know,
SUPPLEMENT 505
DR. DENMAN HAMMOND: We have been
impressed a number of times by the
par-ents’ reaction when told the diagnosis too
abruptly or too soon. On many occasions,
parents bring their child to the hospital with no idea what the diagnosis may be
and no suspicion that it might be a fatal
one. On some occasions, the house officer
has arranged a bone marrow examination
as soon as the child is examined and
some-times the diagnosis is established within an hour of the child’s admission.
We make an effort to sit down with both
parents after the diagnosis is established, to
tell them of the diagnosis, its implications,
what we can do for their child, and what to
expect in the days and weeks to come. We
always try to have both parents present so
we do not burden one with trying to tell
the other. Ideally, this is a session in which the parents can raise many questions.
How-ever, if one attempts to have such a
discus-sion with parents who are totally unpre-pared for the diagnosis, one may
complete-ly lose them. They no longer listen, they
cannot think, they do not ask questions,
and rapport is not established. Their
confidence in a competent family physician
may be unduly shaken.
To avoid these situations, we advise our house officers to tell the parents of a newly diagnosed leukemia patient that their child
has a blood disorder which may be a quite
serious one. An appointment is then made
with the parents to discuss the results of the
laboratory tests, usually that evening or the
following (lay. Often such parents will ask
whether it could be leukemia and they are
told that leukemia is a possibility. This
gives the parents some time to consider the
possibility of a fatal diagnosis.
\Ve find this type of preparation makes it possible to talk with parents at the time the diagnosis is revealed and that they will
generally have had time to formulate a large number of questions. Thus, the time
spent in discussing the diagnosis with the parents, if they had been so prepared, can be a very meaningful one for them, and the
physician can utilize this setting to resolve
a number of questions that are inevitably
going to be raised. We never carry a
pa-tient along for days or weeks without
let-ting the parents know the diagnosis, and I
agree the parent should always be told
promptly. There is quite a bit of art in the
manner of disclosure of this information. I
suspect Dr. Green would accept these
modifications of his comments.
DR. GREEN: I agree with everything Dr.
Hammond says with one exception. In
trying to compress my answer I was
assum-ing as correct those things that you have
helpfully spelled out in greater detail. I
have some reservations about mentioning
leukemia in a differential diagnosis. My
ex-perience is that when you mention this as a
possibility, parents do not hear anything else.
DR. JoHw HARTMANN: How much should
the social worker arid the nurse become in-volved in the psychological difficulties
which parents get into very early? What
about general discussions, a form of group therapy, which we have started here only
recently? Parents come in the evening and we discuss what programs are going on and
what the future might hold. We recently
had one such session and several of the
par-ents told us that a number of them went
home together and talked into the wee
hours of the morning. Many parents have
indicated if they could just talk together, even when the child is ill or after the child
has died, it helps. I think I am a little
frightened, though, when it appears that we
might stir up too much anxiety. One point
which has not been emphasized is what are
we doing with the siblings of these
chil-dren? We are extremely worried about the
chronic conflict and the chronic anxiety
which the parents of our leukemic children
transmit to the siblings. How can we help
them?
DR. FRIEDMAN: These are all most
diffi-cult questions to answer. I think I will
ad-dress myself to the matter of the “group
therapy,” and perhaps Dr. Green can
com-ment on the other two questions. For 2
par-506
ents of children with leukemia once a week
around issues of education; that is, what the disease is, modes of therapy, and things of this sort. In such a setting, problems did
come tip which we either would discuss, or
we would say to the group that this could
not be handled in such a setting. The
par-ents seemed to profit by these sessions, and it was not a case of “stirring up things” that
could not be handled. We did not try to answer specific questions about the progress
of a particular child.
I believe this is an extremely effective way of helping parents, who for many years have used the waiting rooms and solariums for just this purpose. There are, however,
two problems. Group sessions are most
ap-plicable in large medical centers where
such patients tend to be referred.
There-fore, one can ask what is the role of this
technique in the general hospital? Second,
even at referral centers, the constantly
changing composition of the parent groups
poses certain problems. In spite of these
problems, our experiences at N.I.H. led us
to believe that group sessions were an
ex-tremely worthwhile endeavor.
DR. GREEN: I should like to respond first
to the question about the use of allied
health workers in the care of the child with
leukemia. I have become increasingly con-vinced of the need for a realistic approach to the care of children with chronic diseases, whether fatal or not. The different roles of
physicians and nurses are not really as tight
as they once were nor so neatly
departmen-talized. Even with the best intentions on
the part of the physician, many parents and
children will not raise questions with him
although they may with someone else in the
hospital, such as the social worker or the
nurse. We ought to use anyone we can in a
supportive sense. The main thing, I believe,
is to have mutual respect between these
people-to have open communication
be-tween tile physician and the nurse and the
social worker so they communicate to the
physician what they find and he communi-cates to them his impressions of the family.
Very often it may be the social worker or
nurse or aide or someone else who gets
closest to the child, who sort of adopts this child in the clinic or inpatient service and
who can be very supportive to the family.
This also has important implications for the doctor’s own comfort. It is very fatiguing
and frustrating to take care of large
num-bers of fatally ill children, no matter how
much we understand the problem and how
well adjusted we may be or how much we
attempt not to get personally involved. I
think it is important at times to dilute some
of this tremendous responsibility and
emo-tional stress with other professional people. I am glad the question was raised about the management of the siblings. It applies
equally well to the siblings of the child who
is stillborn. What does the mother tell the
children at home when she comes home
without the baby? Or about the child born
with birth defects? It is also important to
prepare the siblings of such a child. Many
children whom I have seen because of
symptoms such as hyperactivity, school
un-derachievement, or depression may have
developed such problems because of the
presence of a handicapped child or a
seri-ous illness in the family. As part of the rela-tionship with the family after the initial
di-agnosis, one must discuss with them and let
them rehearse with the physician how they
might inform their other children. If the
parents are able to communicate with each
other and with the physician and if there is
a sort of openness about this in the family,
the siblings obtain some of the answers to
their questions, even if they’re not asked.
We should pay attention to how the
sib-lings are informed and what their behavior conveys. If the sick child gets favored treat-ment, the other children may resent this. All
this sort of thing must be discussed openly with the parents and through them with the
child.
Another practice that is extremely impor-tant is the follow-up after the death of the
child. No matter what the cause of death in
the child, whether or not an autopsy is
ac-complished, the parents should be urged to
Reactions
of
Those
Who
Treat
Children
with
Cancer
Michael B. Rothenberg, M.D.
From the Departments of Pediatrics and Psychiatrg, Albert Einstein College of Medicine, and the
Bronx Municipal Hospital Center, New York, New York
SUPPLEMENT 507
died, but we sometimes can meet them
elsewhere in a more neutral environment.
One must look at the grief reaction they
have been going through and give them
any needed help in this area.
The question of group therapy is still an
open one. I have some hesitancy about
par-ent groups when the children are seriously ill. Much anxiety is released, and, unless the group leader can skillfully handle and
neu-tralize it in some way, some of these
ses-sions may be extremely disturbing. Again,
we have the need to try this more and
re-cord our experiences.
DR. CHARLES MCCLELLAND: I’m a prac-titioner, and we’re involved in the office in
handling siblings of children either with
I
T IS MY
impression that the reactions ofthose who treat or otherwise work with
children who are dying of cancer or other
fatal illnesses develop from a core conflict within each worker. This conflict arises
be-cause two powerful and normal, but
an-tithetical emotional responses are elicited
simultaneously when one is involved with
the care of the dying-or even possibly
dying-child. On the one hand, there is the
response of compassion which produces the
impulse to move toward the child with aid
and comfort at every level. On the other
hand, there is the response of repulsion by
tile threat of death which produces the
mi-pulse to move away from the dying child in
order to begin to protect oneself from the
impending shock of separation and loss.
The degree of success with which this
conflict is resolved determines the degree of success of the individual health care worker
in providing comprehensive care for the
child with cancer. Before discussing some
suggested ways to approach a successful
resolution of this conflict, I should like to
outline some of the more common feelings
terminal illnesses or any type of chronic
ill-ness. We’ve had some very real traumatic
experiences.
I think children also have coping
mecha-nisms that require longitudinal reaction in
the sense of time. You cannot give this
in-formation (death of sibling) at one time and expect the child to handle, understand, and manage it. It requires ongoing, long-term
counselling with the father and mother. In
counselling them many questions come up,
such as, “did I do this?” It is very hard for the child to work through this kind of thing.
Follow-up certainly helps the parents but
also requires the physician’s interest in
working through these kinds of problems over a long period of time.
and reactions of those who treat children
with cancer which may interfere with such
a resolution.
All those who have chosen the provision of health care services to the sick as their
vocation-be they physicians; nurses;
prac-tical nurses; nurses’ aides; occupational, physical, or recreational therapists; or
med-ical social workers-have in common the
desire to help sick people get well. One
may ask why one should find it necessary to
make such a blatantly obvious statement.
The answer is that when sick people fail to
get well a number of not-so-obvious
reac-tions may supervene in any or all of the
aforementioned health care workers. A patient’s failure to get well frustrates
one of the primary goals and needs of the
health care worker, and feelings of
frustra-tion lead rapidly to feeling angry. But how can one be angry at a sick-still worse, at a
dying-child? And thus arises the feeling of
guilt. Guilt, being an unpleasant feeling, in
itself produces a reaction of anger at the
one who caused the guilt feeling, and a
