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Hersh, Stephen P.Psychosocial Management of Leukemias in children andYouth NIMH Report to Physicians - 2.DHEW-ADM-74-1167416p.; Speech delivered at the Conference onPsychiatric Problems of Childhood, EasternPsychiatric Research Association (New YorkFebruary 1, 1974)

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ME-$0.83 HC-$1.67 Plus Postage.Diseases; *EMotional Adjustment; Family Role; MedicalTreatment; *Personal Adjustment; Psychological Needs;*Special Health Problems*Leukemia

ABSTRACTOriginally presented as a paper at a 1974 Conference

on Psychiatric Problems of Childhood, the pamphlet presents adiscussion of the psychosocial aspects of adjustment and managementof leukemia in children and youth. The increasing length ofremissions in acute lymphocytic leukemia is thought to requirephysicians to consider nonmedical needs of their patients. Discussedare the medical management of the illness, the sharing of diagnosesand protocols with the children and families, the initial period ofadjustment before remission is obtained, the periods of adjustmentduring the course of remissions and relapses, and life planning-including communication with school personnel, development offriendships, marriage, and employment). (DB)

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PsychosocialManagement

ofLeukemias

inChildren

andYouth

by Stephen P. Hersh, M.D.National Institute of Mental Health

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Improved understandino of the etiologicfactors in disease and concomitant tech-nological advances enables the medicalcommunity to modify many disease proc-esses dramatically. Some conditions previ-ously fatal now take the form of chronicdiseases. One example of this in children isleukemia. As currently treated, leukemia nolonger has immediately fatal results. Rather,children suMve for lengths of time up to 5and 10 years. While a few survive longer, wehesitate to label them as cured. The childdiagnosed as leukemic, then, has a deferreddeath sentence if he and his family agree toaccept modern treatment. This treatment,as well as tho diwase, produces changes Inthe child's physique, energy level, andadaptability. This paper* examines variousaspects of such chronic yet fatal. diseases:(1) the sharing of diagnoses and protocolswith the children and families; (2) the initialperiod of adjustment before remission isobtained; (3) the periods of adjustment dur-ing the course of remissions and relapses;(4) life planning (school, independence,intimacy, employment).

Delivered February 1, 1974, Conference_on Psychiatric Problems of Childhood,Eastern Psychiatric Research Associatidn,New York, N.Y.

Some Psychosocial Questions

Beginning in the 1960s, In part due to thetechnologies derived from physics andchemistry, the medical profession hasgained the ability to prolong significantlythe lives of people who earlier would havequickly died. In these situations cure is notoffered. Hope for cure dangles beyond ourcurrent reach. Meanwhile, our new possi-bilities create physical and psychologicalpains which never before existed.

These new successes now create a majorchallenge to the medical community. Whatare the ethics and morality of these dramaticmodifications of disease processes? Toanswer this we must consider and studycarefully the quality of life our technologiesproduce. We must learn from the patientswhose lives we prolong; we must learn fromtheir families and their communities. Weknow relatively little of their experienceswith our treatments and with their illnesses.Whhi are their needs? What are their stylesof coping? How can we provide care thatdoes more than prolong physical existence,trading death for a purgatory in life? Thispaper, based both on work at the NationalCancer Institute and on the experiencesof other clinicians in similar settings, sharesthe results of early Inquiries Into the abovequestions.

The Leukern!as

The leukemias of childhood, especiallyacute lymphocytic leukemia (ALL), no longerhave rapidly fatal results. In the 1950s nomore than 30 percent of children with ALLlived 1 year from their diagnosis. By 1972ninety percent survived the first year.Twenty-five to thirty-five percent now surviveat 5 years post diagnosis. Some young peo-ple are surviving 5 to 10 years, yet themedical community hesitates to label them

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as cured. A deferred death sentence withan existence tled to a medical center, pain-producing tests and treatments, physicalchanges, and changes in energy levelsresult. Therefore, the leukemias of childhoodare presented here as one model for thestudy of chronic yet fatal Illness.

The Illness

The onset of childhood leukemia's symp-toms is sudden. Persistent malaise, fever,sore throat, usually lead to a physical exam-ination and a blood count which reveal theprobable disease. Sometimes first symptomsare bleeding, joint pain, sudden lymph nodeenlargement. The change from a completelyhealthy child to a child diagnosed as leu-kemic can occur In several days to severalweeks. Modern treatment initially demandscomplete disruption of the patient's andthe family's life. Partial disruption neverceases while the child lives. The treatmentprogram may be divided into the broadcategories of remission Induction, remissionconsolidation and remission maintenance.Procedures include multiple finger-sticks,lumbar punctures, infusion of antimetabolitesinto the cerebro-spinal fluid and blood,X-rays, Intravenous infusions, and bonemarrow punctures. Medications can produceburning sensations during the infusions.Blood veins eventually sclerose. Side effectsfrom treatment include: nausea, vomiting,gastric burning, loss of appetite, broncho-Ipasm, Itching, hematurla, cardiac toxicity,peripheral neuropathies (ptosis, foot drop,weak hand grasp), mouth ulcers, rectalfissures, fluid retention, rashes, alopecia,and rarely blindness. Today tho newly diag-nosed child is hospitalized during remissionInduction. This hospitalization cPn last 1 to3 or more weeks. After that, with the remis-sion consolidation period, the child Is treatldin the outpatient department. The total

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process of remission induction and remis-sion consolidation usually takes 3 toweeks. Thereafter the child comes to theclinic every 3 to 6 weeks during the periodof remission maintenance. During this periodthe patient receives treatment over a 5-dayperiod, spending most of these days in theclinic. Bone marrow and blood samples aretaken. This schedule usually lasts 6 months.After this 6-month period, If the child is Inremission, all treatment is discontinueduntil the child relapses. When there isa relapse the treatment procedure beginsanew in an attempt to get a remission rein-duction. At this time it is not unusual tointroduce new medications which havedifferent side effects than those already ex-perienced by the child.

The above sketch of acute lymphocyticleukemia and its treatment is a necessarybackground to an examination of fourpsychosocial aspects of the disease:

1. The sharing of diagnoses and proto-cols with the children and families

2. The initial period of adjustment beforeremission is obtained

3. The periods of adjustment during thecourse of remissions and relapses

4. Life planning

Sharing Diagnoses and Protocols

In many quarters the debate continuesover whether or not to reveal the diagnosisand explain the treatments to the child.Sometimes this debate between membersof the medical profession takes the apparentform of active behind-the-scenes disagree-ment between the treating physician andthe child's family. Sometimes these dis-agreements occur between members of thesame family. I submit that such debate hasno place in the modern medical handlingof leukemia. The treatments demand the

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closest participation and cooperation by thepatient and the patient's famiiy. The enemyis a rather complex one: the blood, thebone marrow.

The fear of cancer's destructive potentialand forms of destruction Is great andfounded in reality. The illness ar:d bodychanges wrought by the medication aretolerated because of promised remissionsand hope for cure. These things cannot behandled without trust. Trust must be estab-lished. We believe it can only be establishedand maintained over the necessary monthsand years by the physician's formingan alliance with the patient and the patient'sfamily. In our current society, this alliancemust have at its foundation the sharing ofknowledge to the limits of the ability of thepatient and his or her family. Children ofall ages use the Information given them,ranging from the label for the disease andlabels for the procedures to the details of theprotocols, as Intellectual supports In theirattempting to cope with the illness andconsequent loss of control. The parents andsiblings do the same. Such sharing ofknowledge even to the point of becomina"experts" in the protocols and treatmentshelps provide a necessary Illusion of controlsimilar to that uset by the medical profes-sion.

Thus, disguising the diagnosis has never,In my experience and that of my colleagues,proved helpful to any of the concernedparties. This position does not call forassaulting the patient or his family with thediagnosis or its Implications. We sharethe label for the Illness, an explanation ofhow we know what the diagnosis is and givea description of Its Implications for theperiod of treatment and remission period.

.For the child both the descriptions of how weknow what the diagnosis is and discussionof Its implications and the treatment aretailored to his age and educational level.

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The Initial Period of Adjustment

Initially, information is not elaboratelypresented. We have learned that bothbecause of feeling unwell and because oftension and fearful expectation little informa-tion is retained by the patient or his familyfrom the first meeting in which InformationIs shared concerning the diagnosis, treat-ment, and course of the disease. All Involvedare in the process of adjusting to the transi-tion of seeing a previously well self or wellchild suddenly transformed into a seriouslyIll self or child. All involved need to developnew techniques of problem solving In thisnew situation. All need to deal with feelingsof helplessness, confusion, and anger. Allneed to come to terms with ways of evaluat-ing their new reality and within its contextlearn how to reduce tension, control anger,helplessness, and fear. "Family equilibrium isendangered. Coping strategies and adaptivemechanisms which were useful In dealingwith previous developmental and adaptivetasks are challenged, and resources aretapped that may not have been formerlyapparent" (Futterman and Hoffman 1973 ).

Repeated responsiveness on the part ofthe medical staff to questions as well asInformation sharing is required to counteractthe rather infinite ability of the mind toconjure up the most frightening fantasies,creating greater stress and challengingmost seriously coping abilities. Withknowledge that the process will bea chronic one the medical teammust head off anticipatory mourning.This Is best done before remission isobtained by helping parents deal withanxieties over whether or not remission willbe obtained. This Is more actively theparents' concern for the first course oftreatment than the concern of the youngpatient. Indeed, children commonly regressduring this period. Prepubertal children

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take comfort in the closeness and supportiveConcern of their families. Postpubertalchildren take similar comfort but are moreconsciously aware of, sensitive to, andchallenged by the observed fear, distress,and anger of parents. Moreover, a certainprotective withdrawal from the parents mayoccur transiently. In retrospect, children ofall age groups recall little of this period.The teenage group recalls little affectiveresponse to the diagnosis and Initial treat-ments.

Adjustment During Remissions andRelapses

We know relatively little about theadjustment of children during this period.This Involves a time span of varying length,usually of years. It has characteristicssimilar to the "Lazarus syndrome" (Easson1970): "And he that was dead came forth..." (John 11:44). One enters the periodafter being "saved" almost reborn. Once Infull remission there is a partial re-entry intothe world so abruptly left behindof school,peers, and activities. Yet, no individualpatient can be given a prediction as to howlong the remission will last for him. We doknow that it is when the first relapse occursthat at least the adolescent patients for thefirst time consciously struggle with and areoverwhelmed transiently with the deadly ith-plications of their disease and the toughgame they and their medical team are playingwith the treatments. We know basically thatthey copethey cope extraordinarily well.Among these patients we encounter fewerepisodes of dysfunction due to mental healthproblems than might be expected In apopulation of children of the same ageschosen at random. This does not mean wedo not see transient depression, angerepisodes, withdrawal. But almost always

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they are short lived, the children and youngpeople showing a remarkable courage,ability to talk about their disease and itsside effects when such talk is appropriate orrequested, and an amazing ability to toleratepaln and uncertainty.

For the parents and siblings this is aperiod during which they must consolidatetheir adjustment to the altered state of theirloved one, a state of chronic uncertaintydisguised by the happy, high periods of fullremission. In most situations the mothersbecome very familiar with the treatmentregimens and protocols because they bearthe primary responsibility for bringing thechildren to clinic and taking them home.Fathers, for a mixture of reasons rangingfrom economic to cultural role expectations,are infrequently present and thus develop adifferent sense of the disease and treatmentprocess, a sense which provides an experi-ential distance between them and theirwives. This relative uninvolvement of mostfathers only changes at times of crisis or atthe time of death. It is one area which needsgreat attention. (Paternal involvement as aproblem is not something unique toleukemia. It presents a particular challengeIn situations where children have chronicdisorders.) Parents must cope with over-protective impulses and try to establish abalance between the increased but neverstable real need for dependency and thedesirability of encouraging the children tofunction as much as possible as they didbefore th3ir iliness. This thus becomes oneof the major re-entry problems for theparents.

The siblings themselves are an importantcomponent of the family who have receivedrelatively little attention In this context. Wedo know that there are reactions, oftendramatic, on the part of siblings to the fit-ness in their brother or sister. Thesereactions include psychophysiologic prob-

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lems such as headaches and abdominalpains as well as regressive symptoms suchas eneuresis, school phobia, and poorperformance In school (Binger 1973).Approximately half, according to the studyby Singer, show problems in coping. It is ourexperience and that of others that these aretransient problems which at least in termsof their gross manifestations usually dis-appear without professional Intervention.Another dimension of the healthy siblings'world is anger at the medical center staff forintruding on and partly taking over theirlives. Thls anger seems to exist In all sib-lings living at home. Such anger has beenfound in some siblings sereral years afterthe onset of treatment. We presently knownothing about the handling and resolutionof this anger or of its effects, if any, on thedevelopment of the healthy siblings.

For the young patient himself the longperiod following the first remission variesgreatly on the basis of the kind of family thechild comes from, the kind of communityand school, the kinds of existing problems,and of course his age. Our approach is toencourage as much independence and self-sufficiency as possible. This includesencouraging the adolescent to come to theclinic himself if he Is able or at least tostay there without the presence of a parent.We encourage hlm to return to all hisactivities. We strongly discourage hometutoring, and make every effort to get thechild back to school. We encourage childrento relate to friends, relatives, and neighborsas they always did. Re-entry for thesechildren is always challenging. Many ofthem have lost hair and must wear wigs.Many of them have changed physicallybecause of water retention due to thesteroid treatments. Those for whom physicalappearance and physical beauty was amajor source of pride are seriously chal-lenged. Those for whom thinking, reading,

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and other intellectual activity was Importantare also challenged because they findperiods when their minds are not quiteworking the way they did before slowerand less clearly. This Is a highly Importantarea for investigation since we have notsorted out how much of the changes incognitive functioning and the irregularity ofthese changes In any one individual are dueto medications, to the disease process, toanxiety and depression. Children of all agesneed assistance with the developing explan-ations to friends, teachers, relatives, andothers. They seem to cope well with theoccasional cruelties and insensitivities. Webelieve they cope by a well-developed useof denial mechanisms. The kinds of thingsthey encounter range from the obvious ofbeing teased about wigs and being askedquestions about theiriack of hair or puffyfaces, to overt forms of piejudice such as aneighborhood uniting to prevent the pur-chase of a house once It was discoveredthat one of the children of the purchasershad leukemia. More subtle challenges arethe insensitivities of teachers who ignorerequests by the children to share, usuallythrough essays, some of their experience.

Life Planning

This Is an area which has received muchtoo little attention. It raises in detail thequestions: How does the leukemic child oryouth relate to school; how can he/shedevelop the increasing independence which's part of growing up; how can he/sheexperience the different stages of intimacythat his/her peers move through; and, whenold enough, If he/she survives that long,what about employment and marriage?Concerning school, our position Is that thechildren be encouraged to return to thesame school they attended prior to theirIllness. As part of this procedure, brief and

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accurate sharing of Information Is necessarywith the school principal and health officialsas well as with the teachers.

Thig information should be the bare mini-mum. it should include: (1) the diagnosis;(2) that the child is in remission; (3) that thechild will have to miss school periodicallyfor treatments; (4) clear definition of limita-tions on activities; (5) clear definition ofareas in which no limitations are necessary.Beyond this, school personnel should beencouraged to ask questions, to whichstraight-forward responses should be given.It should be expected that there will bevarious expressions of anxiety oil the part ofschool personnel; such responses must behandled according to the situation. Usuallythe parents are the ones who communicatethe above Information. I raise the question

_as to whether for an Illness like ieukemia amember of the medical team should sharethls responsibility with the parents.

The degree of independence and how toencourage it in the child depends obviouslyupon the child's age, previous Interests, andfamily style. We have never encountered asituation in which the parents did not needhelp in this area and in which the child didnot have some struggles concerning de-pendency and independence. Tied to theindependence and dependency question isthe kind of change In physique a particularchild is experiencing. So far we have foundthat girls and young women who had beenencouraged as they grew to focus on physi-cal appearance undergo the most extremechallenges. From the beginning, thesepatients need a great deal of help in copingwith loss of hair and changes in their fea-tures. Similarly, help in this respect isneeded by the boy whose athletic prowesswas a focal point of pride to himself, hisfamily, and his peers.

Except when on the Inpatient service,leukemic children often avoid developing

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close relationships with each other. Thesituation in the inpatient service has beendescribed amply by Joel Vernick In aprevious publication (1955). Now, however,most of the patients' time is spent in associ-ation with a clinic. Intimacy with peers ofthe same and opposite sexif it developsis In the outside worldthe world they camefrom; a world which they can only partiallyre-enter. We know relatively little about theproblems of Intimacy for these children,although many, ranging from age 9 to 18years, have shared with us the fact that theyexperience a painful sense of distance anda profound sense of isolation which havelittle to do with their surface socialInteractions.

One adolescent patient married a yearand a half after her diagnosis and remainsin remission. Her husband does not haveleukemia. They live with her parents. Wereally know nothing about the quality ofthis Intimacy or the parameters of herdecision to marry. Warned about conception(the drugs used in treatment are terato-genic in animal experiments), she has kepther feelings and those of her husband'sconcerning conception largely to herself.We have several adolescent patients whoare engaged. In one situation the couple areboth laukemics. Their form of relating Isapparently easier to understand. A momentof thought reminds us we understand little.

Questions concerning employment andschooling have to be faced. We do haveyoung adults, diagnosed in adolescence,who are currently employed. In parallelsituations we have young people attendingcollege. We encourage both. In coping withthe problems of leukemic students, collegeshave had to be flexible in adapting theircurriculums to the needs of such studentsIn matters of course loads, partial comple-tion of courses, and school transfer.Employment Involves Much more difficult

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problems. For a variety of practical reasonssuch as Insurance and discomfort with thedisease, employers are reluctant to hireleukemic patients. If the young people arein full remission, when seeking their doctors'counsel concerning employment, we findourselves very much in the same situationas psychiatrists are when asked by youngpeople whether to put on their collegeapplication that they have received psychi-atric care. In psychiatry we avoid the Issueif possible; some have recommended lying.Are we in the same position with diseaseslike leukemia?

Summary

Acute lymphocytic leukemia Is presentedas a dramatic model In terms of which thequality of life questions raised by modernmedical technology can be examined. I havepresented four psychosocial aspects of ALL(only one of the chronic yet fatal diseases).The paper shares recommended approachesto patients and families, highlighting someareas for attention and further investigationas well as illustrating some observations.The aspects not touched upon are numer-ous. Areas for investigation are exciting.Such areas range from delineating whatparts of apparent changes in intellectualfunctioning result from effects of drugs andwhat part from the effects of the illness orfrom anxiety and depression, to studies ofthe psychological coping processes used bypatients and their families. For example, wesee, contrary to certain teachings, that denialfor people with chronic yet fatalillness is asupreme and necessary form of defense.Perhaps we are wrong. We do know that wehave not looked carefully or far enough. Theentire question cries for the attention ofresearchers.

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References

Binger, C.M. Childhood leukemiaemo-tional impact on siblings. In: Anthony E.J.,and Koupernick, C. The Child and HisFamily. Vol. II. New York: John Wiley &Sons, 1973. p. 195.

Easson, W.M. The Dying Child. Springfield,Illinois: Charles C Thomas, 1970. p. 80.

Futterman, E.H., and Hoffman, I. Crisis andadaptation in the families of fatally illchildren. In: Anthony, E.J., and Kouper-nick, C., eds. The Child and His Family.Vol. II. New York: John Wiley & Sons,1973. p. 127.

Vernick, J., and Karon, M. Who's afraid.ofdeath on a leukemia ward? Amer. J. Ms.Child, 109:393-397, 1965.

* U.L GovEHNMENT PRIITG _C 1974 Q 3 317,

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