CANCER JN CHILDHOOD: A CATASTROPHE IN THE

FAMILY AND IN THE COMMUNITY

In spite of improvement in the mangement of cancer
by the therapeutic modalities of surgery, radiation and chemo-
therapy, the diagnosis of cancer still strikes terror to the
heart of the listener. Patients who face the inevitability
of death realisticallysjfrequently confess that when they die
they would like it to be from any cause other than cancer.
Because the diagnosis of cancer is usually made in the latter
years of normal lifelexpectancy and because cancer and death
are so frequently associated in the mind, when the diagnosis
of cancer is made in a child, the impact upon the family is
devastating and the community views it as a catastrophe.

The death of your grandmother or your mother or even
your spouse from cancer although perhaps not expected is at
least believable. The diagnosis of cancer in a child is not
only difficult to believe; it is unthinkable. It is my intent
to examine with you some of the effects of the diagnosis of
cancer on a family and on the community. When I refer to the
community I refer to the community of health care professionals
who care for the child as well as the broader
community where the child lives. Any discussion of the
diagnosis of cancer and its impact on other people is more
or less automatically linked to the management of the seriously
ill and dying child and his family. This is true because

in spite of the major therapeutic advances that have been
_—

made in the management of solid tumors and leukemia to the
end that the mortality is considerably improved, more children

Still die of cancer than are cured of it.

SKILLS IN PROFESSIONAL MANAGEMENT

No one enters the medical profession skillful in managing
the problems that are generated in the hospital,.in the family,
and in the community by the seriously ill or dying child. When
the diagnosis is cancer, the physician's role is more difficult
and the skills he requires are harder to learn. The physician
who understands his role in the treatment of disease and the
postponement of death for as long a time as possible, fre-
quently does not understand his role in making the serious
iliness of a child, his impending death or his actual death
as bearable as possible for all of those concerned. More than
that, it may be that the physician himself is affected by
the catastrophic diagnosis of cancer in a child and finds it
‘difficult if not impossible to cope with the multitudinous

problems that surround this diagnosis.

SCOPE OF THE PROBLEM

The problems in management are related to the patient
himself, the patient's parents, the broader aspect of the
patient's family, particularly his siblings, the hospital
personnel, and the community. Each of these requires a
different approach, a different understanding, and a different
management goal but if that were not difficult enough, it

must also be recognized that these management goals vary
at different times in the course of the: child's disease.
There is a special set of circumstances requiring specific
Management at the time of diagnosis. If the child's therapy
is not ultimately successful and death is inevitable, a
different set of management goals present themselves as the
child approaches death. Then the physician who frequently
ceases to play a role in the management of his patient's
family when his patient dies, finds that there is a special
relationship to the family of a child who died of cancer
immediately after death. And finally in cancer, as nowhere
elise with the possible exception of an occasional circumstance
surrounding a congenital defect, there are long-term effects
upon the family which can be softened by the physician provided
thet must

that he understands his role / continue in time long after the

death of his patient.

REWARDS TO THE PHYSICIAN

_ the specialty
The rise of/oncology in pediatrics makes the team approach

to the management of the child with cancer a necessity. Although
there are many advantages to having so many individuals and
specialties involved in the care of the cancer patient, the
risk is the impersonal facade of the team. There must be one
individual designated to carry the responsibility of the
Primary physician.

While it is true that no one enjoys the management of the
emotional problems surrounding the dying child, there is

nevertheless a satisfaction to the one who serves as guide
‘through difficult times to the end that the family 1s salvaged,
the community is able to get on without bitterness toward
the hospital or the medical profession, and the hospital
staff is able to return to the routines of care knowing
played . .
that they have / a postiive role in an unpleasant situation.
For this reason, the physician assigned the primary role
must be chosen carefully. The process of relating to the
family and to the pediatric patient must begin at the very
first encounter between physician and family. I believe that
with solid tumors the surgeon who will be responsible for
the operative procedure is the best person to be assigned
the role of primary physician. He must project his integrity, his
capacity for compassion and understanding, in such a way that
the family will be assured during the time of diagnostic
confirmatory studies that when the diagnosis is eventually
known, the surgeon will not only be honest in his dealings
with the family, but will to the best of his ability help
them to understand the situation and bear the burden. This
does not mean of course that the surgeon must share all of
his concerns with the family before the diagnostic studies
have revealed an exact diagnosis. Even though’ there may be
relief on the part of the family if the prognosis is less
than grave, it is cruel to put a family through the possi-
bility of facing a hopeless prognosis before the surgical
procedure that proves ifs Carried out. Usually, the family
is keyed to a high pitch at the time the unpleasant news
must be broken because it is common that a biopsy, a surgical
procedure, or a major diagnostic study confirms the diagnosis,
establishes the prognosis within reasonable limits, and
sets the stage for adjunctive therapy over the course of

months or years.
CONTACT WITH THE FAMILY .

When the moment comes for the surgeon to meet with the
family, attention to a number of seemingly unimportant
details will have much to do with the family's emotional
stability then and in days to come. First of all, a
conference between the surgeon and the family must be
in the best of all possible environments, such as a room
designed for that purpose, the surgeon's office, a quiet
lounge, etc. The revelation of the diagnosis of cancer
should not be told to the parents on the ward, in the corridor,
in the out-patient clinic or in the lobby of the hospital, or
anyplace where a family cannot let their emotions be demonstrated
in any way they see fit without embarrassment, Secondly,
iff it is at all possible, both parents should be together
at this time. If anyone other than the parents is to be
present, the surgeon should be certain that it is a stable
member of the family who will support rather than hinder the
management. Under no circumstances should this be an announce-
ment to a large segment of the family such as frequently
gathers around the parents in a time of crisis. Sometimes
the pastor of the family is a helpful member of the conference.

The surgeon's actual words to the family must be well
chosen. They must not only fit his personality but they
should be gentile rather than abrupt, compassionate while
being factual, and free of scientific terms that are not
understood by the family. When a family has been waiting
for several tension-filled hours to hear the outcome of a
laparotomy, the announcement that the diagnosis is that of

a malignant tumor with a grave prognosis may not be compre-
hended at all.

I have found it valuable to begin such an encounter with
the announcement that the child is in recovery room, that
the operation is over, and that he is in satisfactory condition.
If the physician will then continue by saying that the diagnosis
suspected has been confirmed, the family is eventually able
to understand that the. surgeon was not taken by surprise with
the diagnosis. A pause on the part of the surgeon at this
time may trigger an emotional outburst and for that reason
I usually continue to keep talking about relatively unimportant
things while the family absorbs the first shock of the revela-
tion of the diagnosis of cancer. I then begin in very general
terms to outline the steps that we will be taking immediately
and in the long-term to insure the best possible outcome for
their child.

It has been my custom for years to say as little as
possible on this first occasion after the diagnosis because
I have learned that little else is comprehended by the family
except the diagnosis and its grave prognosis. Therefore,
I tell the family that I will see them again shortly and
talk about the future. No matter how hopeless the situation
may seem to me, I never share utter hopelessness with the
family.

There are families in this situation who hear only what
they want to hear and this can be learned by posing a question

or two to the family when next they meet with the physician.
~7-

If this is the case, then facts must be spelled out exceed-
ingly carefully and perhaps should be done in the presence
of another member of the family who will be able to reiterate
the physician's point of view from time to time.

After announcing the diagnosis to the family, the physician
can usually tell whether this is a time when the family would

whe le

like to be alone or, they would prefer to have the continuing
support of a stranger who is obviously trying to be a friend.
This is the time when the surgeon must be all things to all
men. A kindly gesture such as a arm around the father or
holding the hands of both parents as they sit facing you may
seem at times like an embarrassing gesture to the surgeon but
it is frequently remembered in days to come as an outstanding
- act of support. Some families have a flood of questions at
this time and if so, they should be answered. But whether
then or later, there are certain things that have to be told

to the family in reference to what they might expect to

encounter outside the hospital.

THE FAMILY AND THE COMMUNITY

One of the things that the physician must prepare the
family for is the reaction of the community whether that
community is composed of a few friends of the family, the
immediate neighbors in the city, or the larger community of

a small village or town. . am T

 

 

. es oe ;
ara tian aise ieee SE Te nN elaSy «

The diagnosis of cancer in a child is accepted as an affront

by the community and in an effort to be helpful, actions may
-8-

be precipitated that will not in the long run be of benefit
either to the child or his parents. Almost inevitably some
friend or neighbor is convinced that a different physician,
a different medical team, or different hospital would be
superior to the present arrangement. Not because [I fear another
opinion, but because I am concerned about the family's emotional
stability, I tell them that they will be given many suggestions
by well-meaning friends. I also suggest that some of these
well-meant intentions can direct a patient to a charlatan
rather than to a second competent opinion. The family must
be assured that bona fide therapy is never the property of
one man or one clinic but is available to all reputable
physicians. I have found it helpful to suggest to the family
_ that if there is anyone that I know that has something to
offer that our institution cannot, I will see to it that the
child has the benefit of this additional consultation. I
further say that if there were anything unique that could be
offered the child in another center, I will see that the
referral is made and the economic burden eased if such is
a problem. My suggestion to the family is that the way to
avoid confusion is to inform me of any advice that sounds
reasonable and logical to them. If I know what it is about,
I will discuss it with them; if I do not, I will investigate

and report back promptly.

THEOLOGICAL CONSIDERATIONS
I have taken as much trouble to spell these things out

because in dealing with cancer patients for more than’thirty- we
-9—

years now I have lost only two children to cancer charlatans
and one of these returned to me. I look back on those
occasions and believe if I had been more specific with the
families earlier, both of these tragic circumstances could
have been avoided. It used to be said during World War II
that there were no atheists in fox holes. I have also found
that there seemed to be very few atheists among ere parents
with dying children. This is a time when religious fait

can be of tremendous support to a family going through

difficult circumstances.

Miraculous cures have been sought by religious people
for years. In days gone by this was usually in the Roman
Catholic confession, but recently charismatic movements in
Protestantism have attracted people to faith healers. The
support that a family obtains through their religious faith
might be immeasurable in some instances and never should be
‘downgraded, but on the other hand some so-called faith
healing is made contingent upon the amount of faith engendered
by the family. This means that if a miraculous cure does not
take place, the family is convinced that their faith is
shabby and they have the problem of guilt added to the
emotional problem of the seriously ill child.

If the question of a miraculous cure is introduced by the
family., I usually tell them that I do believe in miracles but
have never seen what I would call a miracle in reference to
their child's problem. Naturally, any advice against seeking
a miraculous cure comes better from someone with strong
religious convictions than from one who is obviously on the

other side of the fence.
10

For this reason it is well to work

closely with the families' clergymen if this is their wish.

In line with what I said previously about having to be
all things to all men at a time like this, I can only speak
from the standpoint of my own faith when I am asked such
questions as, “Why did God do this to my child?", or "What
have we done to be punished like this?", or when I hear
statements such as, “All we can do is hope and pray." I
attempt to meet the family on some compatible ground that
will not be argumentative /that might be reassuring. I have
found that families are comforted by being told that the God
they question is sovereign and does not act capriciously. I
am convinced that it has helped many of my cancer patients'
families to hear me say that if I did not myself believe in
the sovereignty of God I would find it most difficult, if not
impossible, to be caring for their child. If the family

I do so.

requests me to talk to their minister,/ If they want me to

‘talk to their relatives now that the first awful crisis is

past, that is also reasonable. If they ask me to pray with
them, I pray with them. About the only thing you cannot do, as
much as you might want to,is to cry with them. Hospital
. chaplains can be invaluable at times yet I believe that
SPIRITUAL
parents appreciate wermmetrreal support from their physicians.
There probably has never been a relationship between

parent and child in which, under stress, the parent could not

find a cause for guilt. These feelings of guilt become
lil

exaggerated at the time of the grave illness of a child.

So frequently do parents, particularly mothers, consider the
affliction of their child to be punishment from God that it

is commonly: openly expressed. No matter what one's theological
doctrine on punishment might be, parents benefit by the
statement that such an affliction of a child in punishment of

a parent would be evil and that no evil comes from the hand

of God.

THE FAMILY'S QUESTIONS

It is inevitable in a medical center, particularly one
staffed with physicians, residents, Fellows, and students
that all statements made about a child's illness will not
conform to the statements made by the primary ohysician.

It is well to point out to the family that if any questions
arise because of variations in opinion and advice, that

the surgeon is always available and will try to. answer the
questions and put things right. Obviously it is important
to train a house staff that we must be of one mind and one
goal in these situations. High in priority for the house
staff is the admonition that never must a promise be made
that cannot be fulfilled.

After the diagnosis of cancer is made in a child and
a course of therapeutic action is underway, there is a
lull in the relationship between the physician and the
family. This is the very time that the physician must be
aware that the family of his patient is now particularly

vulnerable. The diagnosis of cancer in a child destroys
12

the autonomy of the family. This whole catastrophe is
outside their knowledge and they now have to be dependent
upon technology they do not understand and physicians
they have only just met.

Secondly the family is partially immobilized,--paralyzed,
if you will--by the very diagnosis of cancer in their child.
The family will be asked to make decisions now in conjunction
with their physicians about the future of their child, decisions
of which they know little and their dependency becomes great.
Underlying it all is the awful sense of unreality that they
have a child with an old person's disease.

This is the time when parents inevitably ask such questions
as, "How long?¥"Will he be well again before he dies?¥"Can he
go back to school?"Will he suffer?" what will I tell his
brother and sister?" |

These questions must be faced head-on by the physician
and answered out of his experience to the advantage of the
particular family in. question. Frequently one must truthfully

say that the youngster will be so well for a time that the

parents will doubt the diagnosis and the prognosis. The
question of returning to school, for example, must be
individualized, but in general, if a child feels well, it
is probably best for him to go to school. Even if his
life expectancy is limited, it is very difficult for a
family to have what amounts to a death watch around a
seemingly well child. When he begins to show signs of

the ravages of his disease and school becomes difficult for
13

him either physically or mentally or emotionally, he probably
should stay at home. In some instances school for half a
day is good for morale all around. The promise to alleviate
suffering can always be made but it should also then be kept.
There are a number of pain-killers and sedatives which when
used with tranquilizers can keep the patient @imese pain-free.
The most difficult question to answer, of course, is the
one concerning the time of death. Although it cannot be
definitely answered, there are some pitfalls to avoid. The
first thing to do is not be specific because the course of
disease is too variable. Children have very little concept
of time as compared to their parents. Well-meaning friends
often suggest a Christmas party in October for the child who
may die in November. I believe this should be avoided at all
cost because it takes its toll on the family, the- community,
and frequently on the child himself out of all proportion to

the associated reward.

THE PATIENT HIMSELF

We sometimes become so involved with caring for the
distraught family of the cancer patient that the patient
himself is neglected in reference to the emotional support
that he needs. There is no doubt that honesty is essential

in dealing with children because they can detect a fraud
-14-

immediately. Few children really inquire if they are
.about to die; some do ask if they are ever going to get
better. To the latter type of questioning, I frequently say
something like, "Of course you are going to get better but
tis -etse—erre that I think you will feel worse before you
start to feel better."

I am convinced that many more children have known they
were dying than shared that information with me. Some knew
it and kept it from their family. With a few I have discussed
death at their request. I have not seen a child upset by this.
With many children I have talked about the close call that
they had with death,--but only after the fact. One can
usually feel his way along this path and be guided by the child.
Adult patients who may not fear death itself, almost always
have tremendous anxiety about the dying process. It
has not been my experience that this is the same concern
with children.

I well remember one little girl dying of far advanced
metastatic neuroblastoma who was so unlike a dying child
that she frequently presented a disciplinary problem to her
parents. When she would be threatened with physical punishment,
she would reply with such quips as, "You wouldn't hit a
child with cancer?" or "Is that any way to treat a dying
child?" As difficult as the approaching death of this child
was, there was no overwhelming gloom in the family even as

the child talked about her early reunion in heaven with her
15

grandmother.

LY [ ou INTENSITY OF rrearment | N

In cancer management today there are a number of modalities
of therapy such as radiation in its various forms and a variety
of chemotherapeutic agents which can prolong life but where

Cee nen naa

cure is not expected. In the process of prolonging life,
Oe eee

undesirable situations are sometimes produced including

en.

prolonged pain or discomfort, complications from the tumor

such as blindness or deafness, and all the side effects of
rr

radiation and chemotherapy. When palliation is the only

 

expected reward from therapy, its use must be weighed against

ean

 

tee

_the benefit to be expected.

 

If the proper relationship is developed from the beginning
between physician and family, a great deal can be accomplished
in guiding the family's, thinking along these lines before
the occasion for decision actually arises. I believe that
there are many circumstances when the terminal patient
should be permitted to die as quietly and as gently as
possible rather than to be the recipient of every conceivable
combination of chemotherapeutic agent for the prolongation
of life without the alleviation of his disease. A good

example of this is the terminal patient with neuroblastoma
-16-

who might slip out quietly this week without extraordinary

such treatment i,
therapy but with / might last an additional month at the
expense of a problem with pain, grotesque appearance, blindness
or deafness. I have almost never had a family urge me to
continue therapy under these circumstances if they were

properly introduced to the subject earlier in the course of

the child's illness.

Regardless of where one stands philosophically about
doing everything possible or withholding extraordinary care,
the physician must be on guard so that he never puts a
family who eventually loses a child in the position of

being able to say: "We didn't do all we could for our child,"

 

 

eS enolate Te ena acla ee ee resend Dtoanahdbedeli
When you could have."

[ some OR HOSP ITAL? ]

As the terminal phase of the cancer patient's illness
approaches, the physician might have the choice of choosing
a hospital or the family's home for the time of death.

There are no absolute rules about this, but in general I
favor death at home for a child if it can be managed without
undue strain on the family. Some parents feel they cannot
cope with a dying child if there are other children in the

cere,

family. On other occasions an elderly family member already &
burdening the family with care might preclude the possiblity

of adding a dying child to the household. Although I am
thoroughly convinced that the hospice for dying adults is

a remarkable advance in our management of patients, I do

not think a hospice for children has the same advantages.
L7

The family should always know that there will be a place

in the hospital for a quiet refuge as the end approaches and &

ro OE mm EN

 

that this facility will be for the family's convenience

rather than for the patient's treatment. If the hospital
facility is eventually used, it is desirable that the family
be permitted free access to the youngster's room at all times,

that it be a room not shared by others, that it be at a quiet

end of a hospital corridor, and that the usual disturbing
observations of vital signs be eliminated. The child's
comfort physically and the family's emotional veace of
mind should be the primary goals of the hospital team and
if they are, the family's needs will be automatically
taken care of. If the physician and the family chocse to
have the youngster's terminal days passed at home, I think

tment be made

a home visit/by the physician or by a competent member of

mses oa

oS

the social service or nursing team to assess the

feasibility of the plan.

~N - PHYSICAN AS EDUCATOR

Once the “diagnosis of cancer is established in the
child, I don't think’ that there is such a thing as too much
information that can be given to the family. By telling
the family all that they can absorb about the diagnosis and
the advantages of therapy, not only is the physician's role
changed from that of magician to one of reasoning therapist

but it provides the necessary rationale needed by the parents

as they see their child underaqoing the discomfort and the
18

“physical changes wrought by adjunctive cancer therapy.
Furthermore in the unique relationship of the family with a
child “with cancer to the community, this provides the educa-
tional means of dealing with that community. While it is

not possible for the physician to find his way into the

community, whether that de narrow or broad, and explain

as best he can the problems of the diagnosis and its therapy,
he can use the family as his representative to the community.
I have never done this ina formal way, but © realize full
weli that what I have imparted to the family in the way of
reasonable knowledge is in turn shared with the community
which then is better able to lose its hostility toward the

manage successfully
médical center which does not seem to be able to '/ : this

devastating problem of cancer in childhood.

The local hospital community deserves some attention
too along these lines where a more formal presentation of
‘the rationale of therapy can easily be presented. This is
ever so much more necessary in the hospital environment
where the child with cancer is a rarity than it is ina
pediatric institution where cancer in childhood is more>

7 cared for

_common and indeed may be / . in one unit devoted to that

purpose.

WHEN DEATH COMES

When death finally comes, there is a sense of release
for the hospital staff, the community, and for the family.

‘The family who loses a child with cancer really loses him
—?

ESAS atte

pe nneR Lane ALAR ce bl ol Re ge
BN abrir teat ane

temennna ae

19

twice. They lose him first when they finally come to the
realization that he has a hopeless diagnosis and a hopeless

prognosis. They lose him the second time when physical

death overtakes him. In a sense, the first death is more

difficult and the second provides some feeling of reies. Ue

NN Canceer
It should be said in passing that even/the/patient who

recovers and eventually is called "cured"that the family
goes through all of the same agonizing months wondering
about the prognosis nat is experienced b y the family
that eventually loses their child. When the day finally
comes when the physicians can talk about success rather
than remission, there is a sense of unreality that is very
difficult to bear. Surprisingly enough what would to the
outsider seem to be an occasion for rejoicing and the
opportunity to live life joyously becomes the time of an
emotional breakdown. Families which have held together
begin to
precariously/disintegrate. Wives and husbands who clung
to each other because they felt that support was necessary
each other.
now wonder if they really need / . I believe that one of
the greatest areas of neglect in the treatment of the child

with cancer is the emotional management of the family who

hangs on the precipice of the indefinite prognosis and is

finally almost unable to comprehend that the days of waiting

are over and that they havea livingchild.

 

 

canaeeee

is granted the parents are certainly entitled to know what
the major findings were and it should become part of the

physician's obligation to so inform them.

When death comes if an autopsy is requested and permission

SAR et ea
Ne pe Hh oe nthteed abe be'S

a
20

BEREAVEMENT

There is probably no bereavement that can equal the loss
of a grown child and many parents never really fully recover
from the loss of their child. In my experience such parents
are very much unlike @™® parents of children who die from any

other cause. The child who dies because of an accident has
-?2 1-

justas tragic a death albeit without the long drawn-out

months of uncertainty before the inevitability of death

is apparent. wet Wien euch a child dies in an accident

his death as a rule brings to a close the relationship

between the parents and the Cniita*s physician. Such is

not the case with the cancer patient. Most of the parents

of my cancer patients keep in touch with me for some time,

occasionally this relationship has stretched into decades.

Knowing this, I make it a point to write a letter of sympathy

to the parents of children who die from cancer Wreer My. cane

reiterating major points that I have tried to make in our

previous relationship. These points are aimed: at eliminating

any guilt on the part of the family which I might have detected

that they were harboring, include the assurance that every-

thing humanly possible that could be done had been done, and

indicates my availability at any time that the family might

think a conference might be beneficial. The siblings of the
sHeven ver ae

child who dies of Cancer siembmerrertty neglected in the

bereavement which follows death. srreytiry-and.mourning are

“SaEpoirse~texthe-tragic

 

Lessor ai Iimporcare person in thelr relatiomeiip. ciildren

 

@f"ENLSS And SONGETHGS EVEN younger can understand death’

and—they—sheutd SVE De" TOOlSa INES "TnIAKing that their”
brotiecr or Sister witt-returni. Parents should not fear to
share their bereavement with children. When the youngster

knows why his mother and father, NT ee

are unhappy, he himself finds support in their own behavior
22

and this enables him to express his own feelings of sadness.
Open dialogue concerning the youngster who has died is
probably the best way of dealing in honesty with the remaining
siblings. Heaven becomes a very real place to parents who
have lost a child and the conceptualization of this on the
part of the remaining siblings is a source of comfort. sbi.at.
ablnpossibte Muring the days immediately surrounding the
death of the patient and the funeral, it is well not to
abandon siblings to the care of others than the parents «
UrteOccnsweyware=-very Close .cohatLyes-:and-the=-siblings have
vgrter.

There are normal patterns to bereavement which most

 
    
 

s who deal with death come to recognize. This is
a time when he bereaved individual may verbalize his feelings

of guilt. He expresses his sorrow through crying and a

‘
5

recounting of anecdotes concerning the dead child. He keeps
the memory of the deceased alive by reviewing and recounting
their Lives together rather. than attempting to shut out the
memory and he certainly establishes relationships with those
who support him in his grief. The physician who sees these
normal manifestations of grief can be a source of comfort and
support along with family, friends and clergymen.

However, when abnormal signs of grief become evident as
they frequently do with the death of a child, and they don't

show signs of working themselves out in four weeks or so,

there may be the need for pastoral counseling or psychiatric
23

“help. Such symptoms of abnormal bereavement might be

seen in tHe. parent who seems now devoid of emotion and

™

>, a * . *
acts out his liférather than lives it. His social

relationships are shattered and his affect is listless.

ty

He avoids former normal social activity and becomes isolated.
aw ” , ~ .

In extreme circumstances he may acquire a psychosomatic

condition as for example, asthma, or may~evyen take on the

—

symptoms that the child had just before death. -Agitated
a . me

ay

gptitession and talk of suicide are also highly abnorital..

Although attendance on the bereaved parents may seem
to be beyond the call of duty, the physician who dealt with
the chald who is now dead is in the ideal position to
encourage the grieving parent to review step-by-step his
life with the dead child. If he can only start the parent
reflecting on the past with an appropriate remark, all he
need be then is a willing listener. Grieving parents require
the assurance that tears are normal and should never be told
to be brave and keep a stiff upper lip. In this day

to a grieving family

when house calls/are so uncommon on the part of a physician,

a brief telephone call is better than

no contact at all.

CLOSING THE CIRCLE
The parents of cancer patients have the need more than
the parents of children who die from other causes for what
I call "closing the circle." ‘Parents frequently feel the
need to revisit the hospital where so many of the unpleasant
things associated with the diagnosis, treatment, and -death

of their child took place. This is not a morbid reaction;
24

rather it is an attempt on the part of the family to
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terminate,in their own time in their own way,

 

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these telrennde nine anseniehncemainirinte, On that or /subsequent time
the family may wish to meet their physician and this may be
the occasion when they ask the questions that have prevented
their relative peace of mind. These include suchihings as,
"Tf we had made the diagnosis earlier, might the outcome

have been different?" or Would it have helped if so-and-so
had happened?" This is the time when I talk to parents about
Wwhat-if"and "if-only". There is no circumstance in life which
ends unhappily where we do not have the opportunity to say
"what if" or if only! We can be of great benefit to grieving
parents if, early on, we can coerce them into eliminating the
what-if" and "if-only" questions from their minds.

Some parents have the need to keep in repetitive contact
with the physician who guided their child's therapy. The
burden on the physician under these circumstances is never
heavy andhis availability should be total.

Many years ago the American physician, Dr. Edward Trudeau,
stated that the physician's role is "to cure sometimes, to
relieve often, to comfort always." There is no medical
situation where that role of physician pays bigger dividends
in the emotional stability of the family than in the care

of that family which surrounds the patient with cancer.
SUMMARY OF QUFSTIONS PROPOSED BY AMERICAN ASSOCIATION OF
COLLEGES OF OSTEOPATHIC MEDICINE FOR SURGEON GENERA] KOOP

1 - The costs of medical education are rising at a time when
the Federal support is being withdrawn. Will this continue
indefinately? What implications does this trend have for
physicians of the future?

2 - Delinquency rates on Federal student loans; Osteopaths
have a low rate. Feds are cracking down. Is ratio likely
to be turned around....or will students become more
elinquent as their personal debts become larger due to
changing fund sources?

3 - Prevention: what kind of major programs are needed in
this area?

4 - Physician supply: Some studies show an oversupply of
specialists, etc. What's down the road?

5 - Under-developed rural areas: What are Feds doing to assure
more even distribution of health professionals?

Those expected to appear with Dr. Koop at the press conference:
Dr. Charles Moore, President of Association

Dr. John Barson, President of the Oklahoma school
Dr. William Miller, Chairman of Council of Deans

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