versity Hospital, and on the second day was noted
to have a large kidney which was displaced.
X-rays revealed a super-renal mass with calcification.
At surgery, a diagnosis of neuroblastoma was
made. The disease was limited to this area. The
patient had an excision and postoperative
radia-tion therapy. Following this, there was extension
to a contralateral lymph node chain and this was
also treated with radiation.
Essentially we were faced with a problem of a
child who had had a very fortunate experience;
an isolated solid tumor which had b’en removed
and treated adequately. But, as the child grew
older, several things became very apparent. First,
she didn’t grow. The radiation therapy had not
only killed the tumor but had destroyed the
epiphyseal growth centers of the vertebrae. As she
grew older, she developed scoliosis and had
de-creased pulmonary function. Moreover, she
de-veloped radiation nephritis and severe
hyperten-sion. So, an array of illnesses were now developed
in this little girl who was cured of her malignant
disease. Among those involved in the care of this child were pediatricians, neurologists, radiologists,
orthopedists, pulmonary function personnel,
radia-tion biologists, and hypertensive experts. Who is
going to care for this little girl? I put it to
mem-hers of this group, this is the job of the primary
physician and, indeed, this was the job we thought
it to be.
In a room very much like this, we collected
this constellation of experts and reviewed what
was going on at the time of that illness. This was the first of a series of conferences that have gone on between all of these people for the purpose of viewing this girl as a child and not as a scoliosis and kyphosis-a child with reduced total lung
vol-ume, with hypertensive disease or radiation
ne-phritis.
This is the other role that the primary physician may have with the tumor center.
Panel
Discussion
Dn. HARTMANN: We hematologists in a
cancer center find ourselves serving as
primary physicians almost by default.
Often a child, such as Patty, will not have
as conscientious a referring physician as Dr.
McClelland. If he is unable or unwilling to
resume medical responsibility, the child
be-comes a ward of the clinic, so to speak. I
would like to hear some comments on the
role of a cancer center from Dr. Robertson, who teaches pediatrics, serves as associate
dean of the Medical School, and is also
medical director of a large university hos-pital.
COST OF PHYSICIAN SERVICES
Da. WILLIAM 0. ROBERTSON: Thank you,
Jack. At the risk of confirming that Oscar
\Vilde’s definition of a cynic-”he knows the
cost of everything and the value of nothing”
applies equally well to administrators, I’d
emphasize a few points. What Dr. Borges
has said is very true. If you do an actual
cost analysis of the convenience factor or
on tile experience factor, don’t let anybody
kid you that it’s so much cheaper to care for
these children on an outpatient basis. If we
agree that it is best for either the child or
the adult not to be sequestered in a
hos-pital, then let us recognize tile costs and
admit to them. At the same time, who
ac-tually is providing the care? In many
in-stances it turns out to be a “trainee.” Let’s
not kid ourselves here either. We hide his
cost. Per diem costs in our hospital exceed $65 a day and don’t include the trainees. It covers the hotel facilities-no parking-plus the laboratory, plus food, plus the nursing
service, but not physician services. This
physician service is an expensive item! Now we can attract and use trainees in a few big
places and keep them at a very
sub-stan-dard wage level, but only under these
cir-cumstances. And then to provide primary
patient care, we eventually get into the
problem of “training” a large number of
highly skilled personnel. We end up with
experts who don’t have anything to do
be-cause there is not enough open heart
sur-gery-like challenges to go around! And are
they frustrated!
As a pediatrician-and one who has
worked in a birth defect center-not as an
administrator, I’d emphasize this issue of
the primary physician and his interests. We
have to be more realistic in accepting him
and his hierarchy of what’s important. If I
am in a cancer chemotherapy group, I think
chemotherapy may be a trivial concern or interest at best. We who sit in the medical
center must be careful about passing value
judgments on these priorities and pecking
orders which fail to mirror ours.
This comes back to the issue Dr.
McClel-land focused on. If a family physician
ac-cepts the responsibility of primary
physi-cian in a cancer clinic (and perhaps 75% of
these patients do not ilave a family
physi-cian to begin with), let’s admit it; it is going
to cost somebody some money. You can
pass the cost on directly to that patient; if
you don’t pass it on to that patient, you
pass it on to the rest of the patients-or
you take the loss in income! There are no
other alternatives as far as I can see. This is a major problem in resorting to the primary
physician role under discussion. I don’t
know how realistic it is to expect any
significant changes in the immediate future.
The average practicing physician may be
persuaded he can make a real contribution
to a cancer clinic. But just imagine all of
the other things he could possibly do in a
Children’s Medical Center; he could take
care of all the families wilo have a child
with a congenital malformation, or those
with behavioral problems, or those with
mental retardation, etc. The truth of the
matter is, before he begins, he’s already
overextended.
ARE REFERRING PHYSICIANS MADE TO FEEL WELCOME?
Da. ROTHENBERG: I want to ask Charlie
McClelland primarily, but all the members of the panel, in line with what was just said
by Dr. Robertson, what possibility there
might be for the referring physician to be
present when the initial conference is going
to take place between tile cancer center
group and the family. Now, in a sense, I
think your answers were supplied by the
question about the doctor who couldn’t
care less, who is overwhelmed by it, would
be saying, “No, thanks,” or make up some
excuse. On tile other hand, I wonder if we
are missing some practicing physicians who
don’t feel intimidated by the big center and
migilt be able to play a major role. Now,
obviously there are all kinds of ancillary problems. If a young resident, for example, is going to sit down with the family and tell
them the diagnosis and an old “doe” has to
sit there along with the parents, it is going
to create certain problems unless you have
young residents who are very skilled young men, very skilled in diplomacy.
The other thing, along these same lines, is the possibility of a conference among the
members of the cancer center and the
pri-vate physician who does express interest. Instead of the usual sort of dry, written
summary that may get perfunctorily sent 3
weeks later when the secretary gets it typed up, why not call him on the phone, if he is a long distance away; or, if he is close
actual-ly call him in and have him sit down with
the staff in the hematology clinic.
PEDIATRICIANS RELATING TO HOSPITALS
DR. MCCLELLAND: First of all, I used the
word “primary physician” from the recent
Millis Commission report.#{176} Secondly, I
wanted to make a couple of things clear,
though they are ancillary to the main ques-tion. There seem to be more pediatricians with problems on how to handle hospitals. My suggestion is that there is only one way to handle hospitals and that is for all of your
patients to go to one hospital, and you
should be actively involved in that hospital.
The Millis Commission report relates
that the way most physicians are going to
survive in private practice is in pooling
their skills. Actually, one cannot be all
things to all people but can sustain the
con-tinuity of the care of the family if one
makes a couple of problem-solving
deci-sions about what hospital and what one’s
own involvement in the patient care should
be. If the primary physician could make
that decision-and that is a big decision for
many physicians to make in large
commu-nities-then I think he can take some steps
to handle this communication problem.
0 The Graduate Education of
Physicians-Re-port of the Citizens Commission on Graduate
Medical Educatieo. Chicago: The American
DR. HARTMANN: I think Dr. Rothenberg’s suggestion is an interesting one.
DR. ROBERTSON: Have you ever tried it in
your clinic?
DR. HARTMANN: We have actually a
couple of times but we gave up because
most physicians were too busy. I would like
to know what the situation would be now
in a very large center, say Los Angeles?
PROBLEMS IN INVOLVING
REFERRING PHYSICIAN
DR. HAMMOND: I will tell you about what
we have tried, and about our unhappiness. First of all, we don’t have any patients who are not referred to us so there is a primary
physician in the picture every time. Some
of these are people who are active on our
staff and who may be teaching in the
cardi-ology clinic but don’t have anything to do
with hematology. Many of these are located far from the clinic. They have little motiva tion to come to the hospital and no identifi-cation with it. They may not be
pediatri-cians; they may be general practitioners or
come into a case in some other fashion. We, in talking to tile parents, make it very clear to them in tile first interview that we are
happy to try to give them complete care for
leukemia but that the family physician is
very important to them. We would hope that
the child would be in remission for 80 or 90% of the course of leukemia. During this time, the child is going to have colds and
infec-tions with other pediatric problems they
may have otherwise; and, appropriately, the family physician is the one who should take
care of these problems. This, again, puts
upon us the burden of keeping the family
physician informed as to the course of the
disease in the patient. It is a tremendous
burden o’ correspondence, telephone calls,
and conferences. We try to keep up with
this but we don’t do a very good job, I have
to admit. At times of therapy changes, at
times of definite course changes for a good
many of our patients, but not all, we
man-age to get off a letter to them.
Those referred to us as private patients usually get letters. Our clinic patients are
absorbed by the clinic, and the family phy-sicians drop out of the picture almost
com-pletely in some cases. There is much less
effective communication between the
hematology clinic and the referring
physi-cian. We often, in getting telephone calls
from patients, will suggest that since the
patient seems to be in remission, the fever
is probably due to something else and they
should contact their family physician.
Of-tentimes, we may contact the family physi-cian and tell him the patient seems to be in remission and we don’t think the symptoms
are due to leukemia. We try various means
of communication. We devised a visit sheet
on which there would be summarized on
one side of the page the laboratory data
that went with the visit and a note by the
physician, making it possible to send a xer-oxed copy of this to the referring physician
after every visit. We found this not to be
very realistic. Some of the staff objected be-cause they write so that they can read their notes but not so anyone else can read them. This procedure inhibits their notes a bit-to
write so that they can be copied and sent
out.
The communication that is necessary to
keep the family physician involved is a big burden-expensive physician time,
secretar-ial time, telephone time, etc. It is very
difficult to work this out so the family phy-sician can stay in the picture. Another part of this problem is that, after the diagnosis of leukemia, the patient receives regular
medical care from the hematologist and, by
the time a general pediatric problem arises, the patient has not seen his family
physi-cian for perhaps 6, 9, or 12 months. The
family may feel that the private physician
really doesn’t know enough about the
pa-tient at that time to warrant seeing him.
I think we have had some ideas about
how to reduce this problem, if not erase it.
One, we are trying to get in our hospital a
geographic hematology service for
inpa-tients-a service, through which we could
rotate residents so that they could be made
closer members of the hematology team,
hematologists are a plague, and get a
deep-er unddeep-erstanding of hematology. The
hema-tology staff would make rounds every day
along with some member of our general
pediatric staff. If we had such an attending
physician on the volunteer staff once a
month, we would get 12 people a year who
would become more informed and better
able to take care of the problems that these
patients will have at home. We would
de-velop a nucleus of our active staff who
would be capable and willing to share the
care of these patients with us. This is of
course a long-range program. Under
var-ious clinical cancer training programs or
regional center programs tilere are usually
provisions for enabling physicians to come
in and spend periods of time taking special-ized training. It offers another avenue, but I think all of these together are going to be
inadequate. We ilave to find some other
ways to do this. I would be very interested in any suggestions or thoughts or illustra-tions of how it’s done at other places that might bear on this problem. It is a very real
problem. We have many physicians who
tell us frankly, “I haven’t seen a case of
leukemia in 5 years; I really don’t want to
have anything to do with this patient.”
WORKING WITH PHYSICIANS
IN OUTLYING COMMUNITIES
Dn. HARTMANN: One way we get around this at the moment is to have an elective
2-or 3-month rotation for second year
resi-dents. We attempt to have them become
acquainted with protocol studies, with
drugs that are available, etc. At the
mo-ment, I believe there are four such physi-cians who have received such training
with-in our medical community, along with
others whom we knew well in their training
program. They take care of the patients in
the communities that are geographically far
from the center. We communicate with
them by telephone. We find letters are time
consuming and at times never get sent. We
will send slips along for blood counts; they
send us counts. In some communities this
often means that the patient does not go
back to the original referring doctor but to
a physician in the community who has
in-terest in the disease and knows how to
han-dle the drugs or protocol studies. In some
respects, this is a primary physician.
I think this is a very important program
to train residents for 2- or 3-month periods on rotation. It is difficult because it takes
someone who knows what they are doing.
As Dr. Bergman points out, it is not only
that they learn how to handle drugs, but
also they have a unique exposure to tile
problems of the dying child.
DR. HAMIOND: It seems to me you are presenting the problem of having a primary
physician who is taking care of a family of
four children continue to take care of the
family, minus one child, who has been
re-ferred to another doctor. Have you gotten
into that problem?
DR. HARTMANN: Not really, because the
doctor to whom you refer the child back,
say in Yakima, is most often the only
phy-sician there who has a continuing interest
in these problems. We would discuss them
with the referring physician and if he
pre-fers to take care of the child, fine; but, I
must admit that sometimes our letters are
so complicated, drug lists are so long, and protocols are so confusing that they do not
want to be involved and do not have the
time.
DR. ROBERTSON: This is a point I cannot
resist. Really, are we not telling our
pa-tients, by these very complicated letters, by not getting them typed for 3 or 4 weeks, by
not making phone calls, that, in effect, we
do not want them to go back to their
primary physician? Aren’t we perhaps
say-ing the man out in the community really
doesn’t know about this, our “field of exper-tise.” It seems to me we are communicating
far too much of this attitude. None of us
hesitates to send patients for a $45
exam-ination, but to spend $2.50 to get a good
let-ter typed, that is simply too much money!
If we really want to communicate with our
physician colleagues, there is only one thing to do and that is, do it! If you want not to
maintain a little bit of “mysticism,” then continue on the usual route.
EFFECT OF PROTOCOL STUDIES
DR. DENI5 MILLER: I wonder if the
re-search protocol studies may contribute to
tile exclusion of the community physician from participation in patient care. He
prob-ably has little or no control over the
pa-tient’s therapy and also by the very nature of the study would be unable to contribute in any way toward critical decision making, drug changes, and special determinations.
At tile present time we are not involved in
protocol studies in Rochester. Most patients
have their own private pediatricians, and
the hematologists serve as consultants and
see well patients every month or two and
sick children only during relapse or for
ter-minal care. Our private practitioners have
their own ideas of therapy and follow-up
care. Bone marrow examinations are
ob-tamed only infrequently after diagnosis is
made.
CANCER CENTERS FOR WHOM?
DR. MCCLELLAND: I think the time has
come to ask the question for whom are
can-cer clinics really functioning? Perhaps the whole idea, at least in terms of geographi-cally isolating cancer patients, may not be appropriate. Obviously, you said it is good
for the physicians. It may be good for the
patient’s illness; it may or may not be good
for the family.
DR. BORGES: I think that is a very real
question. I don’t think there would be
many physicians who could tolerate just
taking care of malignant disease. For one
thing, there are other bad diseases that we all know. There is a very real danger,
par-ticularly of the mother becoming so
wrapped up in this disease and her child,
and other children with that disease, that in
effect a “fatherectomy” is performed
be-cause he is out winning the bread and
bringing home the bacon and doesn’t have
such close contact. He sometimes breaks up
more at the end than the mother. From that
point of view, complete concentration of
children with malignant disease in one
geo-graphic area is unwise, as this is all the
family or the child sees. From another point of view, many aspects of the disease are
un-known so we are obliged to increase our
knowledge about them. This requires
spe-cialization on the part of the physician, as
well as on the part of the facilities. We
have to have some concentration of profes-sional activity to achieve research, if we are going to dignify it by that name.
I would like to ask Jack Hartmann, in
your retrospective studies have these fami-lies that have participated in these protocol
programs gained any benefit by
partici-pating? The reason I ask that is because of
something Dr. Rothenberg said about the
increased emotional wallop of the death and the short life span of the child compared to an aging adult. Aside from the inevitable grief of loss of the pleasure of the child, an-other aspect is that this child has not had as
much an opportunity of service to others as
a person who lives longer. I suspect in a
real way, by participating in quantitative studies, a child is contributing to the
wel-fare of others. I wonder if this has been
your experience with families?
CANCER
WARD
DR. HARTMANN: I feel strongly that a
cancer ward is not the best approach. For
this reason we mix all our patients together.
Secondly, protocol studies are not meant to
confuse a primary physician. I think I may
have been a little facetious, but we do have
an obligation with a disease of unknown
etiology and an unknown type of treatment
to try the best we possibly can for that
child. Protocol studies must be carefully
done. They must not harm the child any
more than one would do in regular
follow-up as Dr. Borges pointed out, it is the one
way that we can advance our knowledge of
malignant disease.
Regarding the question about what may
occur a year or so later,I do not think fami-lies dwell a great deal upon specific
proto-col studies that the child was on but they
has my child helped this child who now has
it?” Many of our parents volunteer to be on
call to come in and talk to the parents of
tile new patient so that they can help. I
think that this type of care in a unified way
gives the parents strength, as much as it
may detract from them by following and
seeing the next child deteriorate while their
child is still in remission.
RESEARCH AS THERAPY
DR. BERGMAN: Participation in a research project may be therapeutic in itself. Fami-lies search for a tilread of solace in their despair, which may take the form of trying
to define “purpose.” The thought that the
death of their child may in some way help
other children can serve this purpose. Also an argument for geographic
special-ization, particularly in the outpatient
de-partment, is, as Miss Tonyan and Mis.s
Pi-eroni indicated, the tremendous burden, if
you wish, and tile specialized type of peo-ple needed to take care of such children.
The overall emotional impact on persons
working in the oncology clinic is greater
than in most other clinics. Therefore, we
have to select very special people for this type of task.
GROUP PRACTICE
DR. MAURICE ORIGENES: In the group
practice clinic where I work, we don’t have
tile problem of discontinuous care. If the
pediatrician is tile primary physician of any
child diagnosed as having a malignant
dis-ease, all other physicians are consultants.
\Ve follow about 30 children with cancer,
and an equal number of non-malignant
hematologic conditions in a population of
about 25,000 children. There are two
physi-cians who specialize in hematology and
on-cology in the group, who alternate calls.
Care is relatively simple in group practice.
FAMILIES RELATE TO INSTITUTION
DR. MCCLELLAND: The possibility of
families relating to an institution as a single institution instead of a physician is not im-possible. If the institution is sensitive
to their needs, as Dr. Rothenherg and
others mentioned today, there is no reason that any institution, hospital, or group prac-tice instead of a single doctor cannot serve
the purpose. The only problem here is
dis-continuity-what happens afterwards.
I am still not sure that you have
con-vinced me about the need for specialized cancer clinics. There are centers in our city interested in managing children with severe retardation and their problems are certainly
sophisticated. They are not, perhaps, as
short spanned in terms of threatened life,
but in many ways their problem is equally
great and, I think, here again, the integra-tion of these services in a total outpatient setting is desirable. I am still not convinced that this center is not here for the
physi-cians. I am not sure that the problems of
the particular child with cancer and his
family are, either in terms of duration of
intensity, a great deal different from some other problems that I have seen in the hos-pital.
CHANGE
IN A CANCER
WARD
Miss PIER0NI: Our ward at Boston
Chil-dren’s Hospital has changed somewhat and
I would like to comment on this. Before the hospital began its physical reconstruction we were on the fourth floor of an old build-ing. At that time the ward was only for the
tumor therapy service. Our beds weren’t
always full and this was of concern to the
hospital administration. You know empty
beds mean loss of money so “boarders”
began to come. “Boarders” are people who
don’t belong on your ward but because
there isn’t a bed on their own specialty-surgical, medical, dental, or so on-they are
boarding on your particular floor. We
looked at this with great trepidation. We
wondered what effect it would have on our
parents, seeing a child with pneumonia
come and go perfectly healthy after 3 days, go to school, and so forth. The other thing
that concerned me was the effect on the
parents of these boarders. Were they going
wilole truth-that because their children
were in a cancer ward something was being
held back. There were a few months of
uneasiness, then the new building was
com-pleted and we moved to the top floor.
We still had only 20 beds, but, again,
be-cause of greater outpatient care, better
medication probably, we have very rarely
had more than 50% of the beds occupied by
our patient group so again the boarders
came and now they are here to stay, and I
must say it’s quite a happy marriage.
It works to the advantage of both sets of
parents; and, it works to a certain extent to
the disadvantage, but the disadvantage is
much less. For instance, the boarders are
more apt to be local people. What has
hap-pened is that the parents of the boarders
are becoming friendly, they are talking,
they are taking care of each other’s
chil-dren, they are inviting the parents of our
children home with them for dinner, so that
they are getting some home atmosphere. It
means that when our children are
dis-charged they may not be quite ready to go
to their own community, if it is a great
dis-tance. This is another source of finding
playmates for outpatients, which they miss. There is one other point about the parents
coming back and wanting to talk to the
present parents. Our parents usually come
back after their child has died. Some more
easily than others. Some admit that the first visit is extremely difficult and tile second
visit becomes a little easier. Those who
come from too great a distance, write. We
have ilad many parents who have said
“please let me know if there is anything we
can do to help the parents who are now on
the ward.” \Vhen I was more naive I took
this literally-and I must say I did it on my
own-and this was a lesson. This is
definitely a team approach. On my own, I
did ask one mother I happened to see in the medical outpatient with another child if she
could come up and talk with a new parent
because I thought maybe she had gone
through it and there would be some line of
communication. It fell flatter than a
pan-cake and it worried me; I didn’t know what
to do about it, and I didn’t know to whom I
could go to talk because obviously I had
done something without permission. So
finally I had it out at rounds one morning.
We finally decided that we would try it
once more as an experiment, but this time
we would carefully choose the parent to
come back in and we had such a parent.
This didn’t fall quite as flat but it didn’t work out. I think I finally know the answer.
A parent whose child has already died
means defeat to the parent whose child is
undergoing treatment. I may be wrong but
I am sure there is something about this that enters into it; so, we have not used parents of our former patients in our clinic per se. We send them to other parts of the hospital for volunteer work and really they are just
as happy about it after we have talked to
them. They do come back to visit; they are
aware of some of the needs on the ward
like a new coffee pot for the kitchen and a
new toaster. Incidentally, we let our
par-ents go into the kitchen and get the meals
for their youngsters, which makes the
hos-pital a little more home-like and this sort of
equipment does get used up.
PARENTS
RELATE TO EACH
OTHER
DR. Mii Pm.RcE: It has been said today
by several different people that parents feel
secure when they are having their child
treated in a center with other children who
have leukemia or cancer. Many, many
par-ents have said to me, “I am glad I came to
this center because here I feel the security of all the doctors interested in the field.”
They get a great deal of satisfaction from
having news brought to them when I return
from a meeting of a cooperative research
group. It gives them a great sense of
securi-ty that their problem is being shared by
other doctors, not only in Chicago but all
over the country. This is a benefit that
comes from the cooperative research effort
that is being made.
A center should not become so large and
receive so many children that it can’t do
many of the good things that we have heard
that we cannot attend to the psychological needs as well as the physical needs, I think then the center is too big.
On another point, it seems to me there
are very few parents who are ready to share their experience while their child is ill and still alive. But, if they can have an opportu-nity of meeting other parents later on, this
becomes a productive experience for them.
We have a fairly successful fund-raising group in Chicago. It is called the Children’s Research Foundation. They had a spontane-ous birth in just this way: a group of parents
who met each other on the ward felt that
they would like to do something to raise
money for cancer. They took the name of
the Children’s Research Society. We
per-suaded them not to put in the word
leukemia or cancer so they just took
Chil-dren’s Research and help any seriously ill
child that needs financial support.
DR. HARTMANN: We have had an after-noon of trying to be the devil’s advocates,
even though most of us are deeply
in-volved. To summarize, we do exist as
chil-dren’s cancer centers. There are great
ad-vantages to this approach, but it is far
from perfect, and many legitimate
ques-tions have been raised about possible
deficiencies. As has been apparent
through-out our seminar, we have much conviction
but little knowledge about the feelings of
the medical consumers and the health
professionals outside medical centers. We
are dealing with a sensitive subject, which
causes some to turn away from such
re-search, but we need such knowledge so that
we can be as effective as we are active. Finally, the intensity as well as quality of the discussion today indicates the need for
those of us who are involved every day in
the care of children with cancer to share
our problems more frequently with others.
Aside from obtaining moral support, we
might mitigate the avoidance reaction to
ourselves, our patients, and the basic ques-tions of life and death with which to deal.
My sincere thanks to the speakers,
