Death and Dying Life and Living

8/7/2019 Death and Dying Life and Living

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into coping with a long-term life-threatening or life-limiting condition (Dane.1996). Inmany ways, these situations can be as difficult as coping with acute dying.Thus, one 12-year-old girl had the following to say about contending with the un-certainties posed by HIV infection: "Living with HIV and knowing that you can diefrom it is scary .... Ihink it is hardest in this order: Not knowing when this willhappen .... Not knowing where it will happen Worrying about my family ....What will happen to my stuff and my room? Thinking about what my friendswill think" (Wiener et al., 1994, p. 24).

@ Children Who Are Coping with Bereavementand Grief

quib, a young0\ 1 , bas lost hispiece (peace)and is sad.

There once was a scholarly debate about whether children are able to grieve after adeath (see, for example, Furman, 1973). This debate rests on a failure to distinguishbetween grief and mourning, together with an absence of adequate models forchildhood mourning. Children certainly experience grief (that is, react to loss).They may cry, get angry, become depressed, have trouble sleeping, regress in theirbehavior, or react inother ways to loss.

However, children do not react to loss or express their reactions as adults do(Wolfenstein, 1966). For example, bereaved children may not display their feelingsas openly as many adults do, and they may immerse themselves in activities o f

326 PARTFIVE Developmental Perspectives


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everyday life such as play and school instead of withdrawing into preoccupationwith thoughts of the deceased person (Romond, 1989).As a result, children's griefreactions may be more intermittent in character than those of many adults and thuslonger in duration (Worden, 1996). Inthis way,children may be "dosing" themselveswith their grief and mourning, that is, allowing themselves to experience their griefreactions and their efforts to cope for a while, but then turning awaywhen that be-comes overwhelming or when other concerns attract their attention. For bereavedchildren, it is also important to ask how normative developmental tasks influenceencounters with loss, and vice versa: Can children feel secure when they are copingwith loss and grief? Does healthy development help them in such coping? In wayslike these, there may be major differences between bereaved adults and children.

The real issue for bereaved children is not so much whether they can grieve butthe nature of their grief and mourning. That is, what are the central concerns thatare likely to preoccupy bereaved children? And what are the tasks of mourning thatchildren face in coping with Lossand grief?

Issues for B ereaved ChildrenThree central issues are likely to be prominent in the grief experiences of bereavedchildren and may apply to the perceived or real termination of any relationship forchildren: (1) Did I cause it (death or some otherform of loss) to happen? (2) Is itgoing to happen to me? and (3) Who is going to take care of me? The egocentricityof these issues is obvious. When a child does not rightly understand the causality in~volved in a loss, perhaps because of ignorance or magical thinking, it is not surpris-ing that issues of origin and endangerment should present themselves.The death of a parent or other caring adult may especially evoke the first andthird of these issues. For example, if Mommy says in exasperation one day, "You'llbe the death of me," and is later killed in a car accident, a child may be anxious aboutwhether the latter event fulfilled the promise of the former. Similarly,when there iswidespread discussion of a large-scale trauma, such as happened on September 11,2001, or nightly media reports about deaths in Iraq, children may wonder about po-tential threats to themselves. And when children's welfare depends in so many wayson parents and other adults, we can understand whythe death of an important per-son might lead a child to be anxio us about who will now provide the care that he orshe needs (Donnelly, 1987; Silverman, 2000). As a result, many children who haveexpe.rie.nc.ed the. g e. ~th ofa ~a.l'ents.tri.~e~ t?aintain an e.motional connec.tio? ~th.the deceased-parent by talking to that individual or holdmg on to symbolic linkingobjects such as pictures or gifts (Silverman, Nickman, & Worden, 1992).

If someone dies in the family and a child perceives that Daddy (or the doctor orothers) did not or Gouldnot prevent that sad event, then the child may be concernedthat he or she could experience the same unhappy fate. The death of a sibling orother child may be especially difficult since it strikes so dose to the child's own selfand may rob the bereaved child of emotional support from caregivers (Davies, 1998;Stahlman, 1996;Toray& Ohjenbruns, 1996).A sibling or playmate is equally a com-


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It has long been known that bereaved children especially need support, nunranee, and continuity in their lives. According to Worden (1996), the Harvard CBereavement Study established a more detailed list of children's bereavement nThese include:

Adequate information-clear and comprehensible information aboutimpending death (whenever that is possible) and certainly after a deathoccurred

Fears and anxieties addressed-to know that they will be cared for and toperience consistent discipline Reassurance that they are not to blame Careful listening-e-in the form of someone who will hear them out and

minimize their concerns Validation of their feelings-including respect for and safe ways to expr;

individual reactions in their own ways Help with overwhelming feelings-especially when sadness, anger, anxi

and guilt are intense Involvement and inclusion-both before and after a death, with preparati

and without being forced to join in Continued routine activities-in the form of age-appropriate activities, su

as play and school Modeled grief behaviors-through adults who can share their own grief anc

mourning, and show how to experience and express these in constructiveways

Opportunities to remember-both after a death and throughout lifeChildren respond to bereavement experiences inways that suit their particular

developmental situation (Fleming, 1985; Furman, 1974; Silverman et al., 1992Silverman & Worden, 1992a). For example, children who do not appreciate the fi-nality of deatb may wonder what sort of activities are undertaken by the deceasedwho is thought to be somehow alive in a different way or in a different place. lhcontrast, children who appreciate that death involves irreversibility and nonfunc-tionality may ask very concrete questions about what happens to a dead body whenit stops working.

In their actions, be~eav-ecrchildren may delay beginning their grief work or reveal-ing it to others. In their efforts to cope, children may appear to turn away from deathfrom time to time-for example, to watch television or to go off to school, To adults.this retreat may seem to display lack of awareness, comprehension, or feeling. Morelikely, it.simply involves a short attention span, a failure to realize that the loss is per-manent, or a temporary defense against being overwhelmed by the implications of theloss. Usually, strong feelings of anger and fears of abandonment or death are evident inthe behaviors of bereaved children. Also, as we noted earlier, children often play deathgames as a way to work out their feelings and anxieties in a relatively safe setting. Suchgames are a familiar part of the lives of children; in them, a child can stand safely asidefrom the harm that comes to the toys or imaginary figures.

Worden (1996) also noted a "late effect" of bereavement in which a significantminority (though certainly not all) of the school-age children in the Harvard Child

328 PART FIVE Developmental Perspectives


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Bereavement Study were found to be encountering more difficulties at two years af-ter the death of a parent than they were at earlier times (four months and one yearafter the death). This finding is closely correlated with the family context of thechild and especially with the functioning of the surviving child. The lesson hereseems to be the importance of being sensitive to the possibility of both ongoing is-sues for a bereaved child and those that may only arise at later point in the child'sbereavement. The death of a significant person in a child's life does not necessarilylead to complicated grief and mourning, but it can have a long-term impactthrough a sense of emptiness and the ongoing "presence" of the absent person.Another distinguishing feature of childhood bereavement is seen in childrenwho may talk to those around them, even to strangers, as a way of watching for re-actions and seeking dues to guide their own responses. By contrast with adults whomay withdraw into themselves and limit communication when they are mourning,children often ask questions over and over again-"I know that Grandpa died, butwhen will he come home?"-as a way of testing reality and confirming that whatthey have been told has not changed. Some questions from children baffle adults:"Where is dead?"; "When you die and go to heaven, what do you do there all day?";"If Grandpa died and went up to heavel1,.why is he buried down in the ground?"When viewed from the developmental and experiential perspective of a child, theseare quite logical efforts to interpret the meaning of what has happened.Tasks inMourning for Bereaved ChildrenIII children, dying children, and children who are bereaved may all experience grief.They are all children who are responding to the events and the losses that have oc-curred or are occurring in their lives. Mourning is the task work involved in at-tempting to cope with or learn to live with loss and grief. In a bereaved child thework ofmourning will be superimposed on basic developmental tasks. Throughoutchildhood, mourning tasks may need to be addressed again and again in appropri-ate ways at different developmental levels.Thus, an individual child may mourn thedeath of his or her mother, her absence in the months and years that follow, whatthat subsequently means for being different from schoolmates who have a livingmother, and his or her inability to draw on the absent mother's support or to shareachievements with her in later school years. Reworking losses and grief responses inthis way is quite consistent with maturational processes. Healthy mourning inte-grates losses in ways that shake off unhealthy obstacles and facilitate ongoing living(Furman, 1973, 1974).Worden (1996) identified four tasks of mourning that applyto bereaved children, although he noted that these tasks "can only be understood interms of the cognitive, emotional, and social development of the child" (p. 12). Ac-cording to Worden, these tasks are (1) to accept the reality of the loss; (2) to expe-rience the pain or emotional aspects of the loss; (3) to adjust to an environment inwhich the deceased is missing; and (4) to relocate the dead person within one's lifeand find ways to memorialize the person. This task-based account of mourning isquite similar to the adult model from Worden (2002) that we examined in Chapter9 (with the possible exception of the way in which Task 4 is phrased here, whichseems to reflect the great importance for children of maintaining some sense of thepresence in one's life of the now-dead person). Instead of pursuing it here, we turn


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In this section, we organize guidelines for helping children cope with death, dying,and bereavement in four dusters: some general suggestions; a proactive program ofeducation, communication, and validation; helping illor dying children; and help-ing bereaved children.

(1988a, 1989b; see also Trozzi & Massimini, 1999), who identified the fo llo v .tasks as central to productive mourning in children:

The first of these tasks is to understand and try to make sense out of thappening or has happened; for this task, children seek information abodeath and its circumstances, as well as ways of interpreting or comingderstand its meaning.

The second task is to express emotional and other strong responses to tilLsent or anticipated loss; this involves the identification and validation ofings and other strong reactions to loss that the child may be experiencingthe first time, as well as finding appropriate ways that are not hurtful tochild or others to express such reactions.

The third task is to commemorate the life that has been lost through somemalar informal remembrance; typically, this involves large-muscle(such as running, jumping, or otherwise doing something) and someof memorializing or remembering the life that was lived.

The fourth task is to learn how to go on with living and loving; this oftenvalves a child's need for permission to find ways to go on with healthy Iiin the aftermath of a significant loss; it always depends on successfully'grating loss and living.

This schema reminds us that bereavement has many dimensions and that childo strive to find effective ways of managing loss and grief.

Baker and his colleagues {Baker & Sedney, 1996; Baker, Sedney, & Gross, 199built on Fox's task-based schema by noting that children's mourning tasks may sover time in their focus and relative significance. Early tasks are likely to involveemphasis on trying to understand what has happened and children's needs to pro themselves and their family. Middle-phase tasks usually emphasize emotional actance, reevaluation of the relationship (memories and connections), and slowly leing to tolerate painful and ambivalent feelings. Late tasks typically center on forn .a new sense of personal identity, constructing a durable internal relationship todead person, investing in new relationships, returning to normative developmentasks and activities, and coping with periodic resurgences of pain.

Helping Children Cope with Death, Dying,and Bereavement

Some General SuggestionsThe basic principle in helping children cope with death is more a matter of attitudethan one of technique or easily definable skills. As Erikson (1963, p. 269) wrote:"Healthy children will not fear life if their elders have integrity enough not to fear



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death." Unfortunately, adults often adopt tactics that attempt to insulate childrenfrom death-related events, avoid such topics, and deny the finality of death (Becker&Margolin, 1967). In so doing, they block children's efforts to acquire information,express their feelings, obtain support, and learn to cope with sadness and loss.At the very least, children deserve assistance from their elders indealing withchallenges presented by death. Katzenbach (1986, p. 322) identified the reason whythis is so quite pointedly when he wrote:

Do YOll know the sensation of being a child and being alone? Children can adapt won-derfully to specific fears, like a pain, a sickness, or a death. It is the unknown which istruly terrifying for them. They have no fund of knowledge in how the world operates,and so they feel completely vulnerable.

Death-related challenges, including those associated with the unknown and a child'ssense of vulnerability, wi l l arise and children wil l attempt to deal with them. The onlyresponsible option open to adults is to make available their knowledge, experience,insights, and coping resources to children (McCue&Bonn, 1996; ussbaum,1998).A s LeShan (1976, p. 3) has written: "Achild can live through anything, so long as heor she is told the truth and is allowed to share with loved ones the natural feelingspeople have when they are suffering" (see Issues Arising #8).

Adults cannot face death for their children or live on their behalf, but adults canprepare children to do this for themselves and can often walk alongside, at least partof the way."Part of each child's adventure into life is his discovery of loss, separa-tion, non-being, death. No one can have this adventure for him, nor can death belocked inanother room until a child comes of age" (Kastenbaum, 1972,p. 37).Helping children cope with death is an ongoing process, not a unique event thatoccurs only at one specific point in time. Children often return over and over to is-sues that concern them. Such issues need to be readdressed as children confront dif-ferent developmental and situational challenges. It is part of their continuingmaturation and socialization, which is carried out in a natural and effectivemannerwhen it draws on ordinary events in living and teachable moments, together withchildren's own questions and initiatives. Adults can also strive to create opportuni-ties for constructive dialogue with and between children. For example, summercamps for children who share an illness (such as cancer) have been shown to helpestablish relationships that last well beyond the camp sessions and that supplementin constructive ways relationships with healthy peers (Bluebond-Langner, Perkel, &Goertzel , 1991).Adults may need to make special efforts to help children cope with death in asociety that has limited experience with natural human death and whose death sys-tem all too often inhibits constructive interactions between children and death. Thisentails accepting certain related responsibiliti es (Carr, 1984a), such as:

Undertaking preparation-by initiating a reflective analysis (which no per-son ever fully completes) of one's own thoughts and feelings about death,and by becoming familiar with basic principles in the body of knowledgethat has been developed in this area Responding to real needs in children (rather than those adults project onthem)


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ISSUES ARISING#8 Should Adults Talk to Children about Death?

In our society, adults often wonder if theyshould talk to children about death, whatthey should say, and how they should actwith children in death-related situations.These questions arise in many ways: Shouldwe discuss death with children or teachthem about loss and grief even before adeath takes place?; What should we say tochildren after a death occurs?; Should wetake children to funeral services? Perhapsthe most difficult of all questions of this typearise in situations in which adults (parents,family members, or care providers) are chal-lenged by a child who has a life-threateningillness and who is facing his or her imminentdeath.One recent contribution to these discus-

sions (Kreicbergs, Valdimarsd6ttir, OnelovHenter, & Steineck, 2004) described a study ofSwedish parents whose child had died fromcancer between 1992 and 1997 Among the561 eligible parents, 429 reported on whetherthey had talked about death with their child.Results showed that more than a quarter ofthose who did not talk with their child aboutdeath regretted that they had not done so .

Similar regrets were reported by nearly half o'the parents who had sensed that their childwas aware of his or her imminent death. Bycontrast, among the parents who had talkedwith their child about death, "No parent in thiscohort later regretted having talked with his Of'her child about death" (p. 1175).The implications of this study suggest

that, despite all of the challenges involved intalking to a child about death and even in thevery demanding circumstances of a child fac-ing his or her imminent death, it is most of-ten better to go ahead with suchconversations. The main reason for this isthat, as Rabbi Earl Grollman has often said,"Anything that is mentionable is manage-able." Opening a line of communication withchildren is preferable to allowing them to tryto cope on their own with incomplete or im-properly understood information and thedemons of their own imaginations. In addi-tion, a child who is able to have his or herconcerns addressed in a thoughtful and lov-ing way is a child who has someone he orshe can trust when there is a need to lookfor a source of support,

Working cooperatively-with children, with other adults, and with relevant institutions inAmerican society,such as educational and religious organizatioCooperative work with and by children is well illustrated by one child who composed a children's version of a widely circulated set of principles formulatedadults by the Center for Attitudinal Healing in California (see Box 12.2) and by an-other (Gaes, 1987)who wrote My Book for K ids w ith C ansus . Helping can flow fromchildren to adults as well as from adults to children.A Proactive Program of Prior PreparationWhenever possible, one helps children best by preparing them ahead oftime to copewith issues associated with sadness and loss (Metzgar & Zick, 1996). The key ele-ments in a proactive program of prior preparation are education, effective commu-nication, and validation, In terms of educat ion, adults can explore with children a



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BOX 12.2

Children's Ve.rsion of Principles of Attitudinal Healing1. Love is one of the most important things in life!2. It is important to get better-so we must not let fear trap us!3. Giving and receiving are the same thing.4. Don't live in the past and don't live in the future.5. Do what you can now..Each minute is for giving love.6. We can learn to love ourselves and others by forgiving instead of not for-

giving. Example: fighting.7. We can find love instead of fault.8. If something is the matter outside, don't go crazy because you are safeinside. .9. We are students and teachers to each other.10. Don't just look at the bad things, look at the good things too!11. Since love is forever, death need not be scary.12. We can always see other people as giving love or asking for help.

Source: Adapted by Kaycee Poirier, II years old, from ShawniganLake, BG, Canada, for the Center for Attitudinal Healing,

Sausalito, California (415-331-6161). Reprinted with permission.

relatively safe encounter with death, such as a dead bird found in the woods or adead fish from the school aquarium (Stevenson & Stevenson, 1996b). "Teachablemoments" that are not highly charged with personal feelings can represent good be-ginnings for adult-child dialogue (Carson 1984). Children can also "tryout" adultrituals by acting out various sorts of memorializing practices, as in one story aboutclassmates who planted a tree in memory of their teacher's dead son (Simon, 1979).(Note that a child's beloved pet may present quite a different and much less "safe"situation than one arising from a strange, wild animal; see Butler &Lagoni, 1996.)An extensive body of death-related literature is now available to be read with orby children at all developmental and reading levels (for an annotated list of selectedexamples, seeBox 12.3and Appendix A;see alsoCorr, 200Da,200Ic). Also,there is lit-erature for parents, educators, and others who are helping children cope with death(seeBox 12.4),and in some areas there may be workshops or collegecourses on issuesrelated to children and death (Carr, 1980, 1984b,1992b,2002). Suggestions on how touse these resources are offered in Box 12.5.The underlying principle is that "any sub-ject can be taught effectivelyin some intellectually honest form to any child at anystage of development" (Bruner, 1962,p. 33). This is well illustrated in an annotatedbibliography of children's books about the Holocaust (Rudin, 1998).

Effective education and prior preparation in all forms depend on e ffe cti ve com-municat ion Here, the centra! guideline is "take your cues from the children, answerwhat they want to know, what they are asking about, in their terms" (Bluebond-Langner, 1977, p. 64). Doka (l996a) suggested organizing one's approach aroundthree questions: "What does a child need to know?" "What does a child want toknow?" and "What can a child understand?" Each of these requires careful listening,


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B O X 12.3

Annotated descriptions and complete bibliographical information are pro-vided inAppendix A for the following 86 books plus 67 others.P IC T U R E A N D C O L O R IN G B O O K S F O R P R E S C H O O L E R SA N D B E G IN N IN G R E A D E R SAbout the deaths of pets and other animals:Brown, M . W . (1958). The Dea d B ird.Dodge, N. C. (1984). Thumpy 's Story: A S tory of Love and Grief Shared byThum py, the Bunny.Duckworth,1. (2003). Ragta il R emembers : A S tory That Helps ChildrenU nders ta nd F eelings of G 1'iefHarris, R. H. (2001). Goodb ye Mous ie.Hemery, K. M. (2000). Not Jus t a Fish.Holmes, M. M. (2000). A Terrib le Thing Happened.Kantrowitz,M. (1973). W /ien V iolet D ied.Krasny, 1.,&Brown, M. (1998). W /1en D inosa urs D ie: A Guide to Under-

s ta nding D ea th.O'Toole, D. (1988). Aarry Aardvark F inds H ope.Varley, S. (1992). Badger's P arting G ifts .Viorst, J . (1971). The Tenth Good Thing a bout Barney .Wilhelm. H. (1985). I'll Alw ays Love You.

About the deaths of grandparents, parents, and other adults:Bartoli, J . (1975). Nonna.Carlstrom, N . W . (1990). Blow M e a Kiss, Mis s Lilly.Czech. J . (2000). The G arden Angel.Passler.], (1971). M y Grandpa D ied Today.Hemery, K.M. (1998). The Brightes t S ta r.Hesse, K. (1993). Poppy 's C ha ir.Hodge, J . (1999), F inding G ra ndpa E veryw here.Zolotow, C. (1974). M y Grandson Lew .

About the deaths of siblings, peers, and other children:Bunting, E. (1999). Rudi '5 Pond.Clardy, A. F . (1984). Dus ty W as M y Friend: Com ing to Terms w ith Los s .Cohn, 1 . (1987). I Had a Friend Named Peter: Ta lking to Children about the

Death of a Friend.Connolly, M. (1997). It Is n't E as y.Dean,A. (1991). Megg ie's Mag ic.

Selected Literature for Children about Death, Dying,and Bereavement


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BOX 1 2 . 3 continuedSelected Literature for Children about Death, Dying,and BereavementAbout other types of events related to death and loss:

Blackburn, 1. B. (1991). I Know I M ade It Happen: A Gentle Book aboutFeel ings.Carney, K. 1. (1997). T ogether We'll G et through This !Doleski, T. (1983). The Hurt. .F o x, M . (1994). Tough Bor is .Jordan, M. K. (1989). L os ing U ncle Tim .Joslin, M. (1998). The G oodbye Boat.Lo ring , P ., & Johnson, J . (1994). Lucy Lettuce: A H ead of H er Time.Mellonie, B.,& Ingpen, R. (1983). Lifetimes : A Beautiful W ay to Expla inD ea th to C hildren.Shriver, M. (1999). What's H ea ven?

S T O R Y B O O K S A N D O T H E R T E X T S F O R P R IM A R Y S C H O O L R E A D E R SAbout the deaths of pets and other animals:

Carrick, C. (1976). The Acciden t.Graeber, C. (1982). Mustard .Johnson, J. (1998). Remember Rafferty : A Book about the D eath ofa Pet ...

for Children of All Ages .Tam berino , S . S . (2001). Grunt.Wallace-Brodeur, R. (1995). Goodby e, M i tc h.Weigelt, U. (2003). Bear's Last Journey.White, E. B. (1952). Charlo tte 's Web .

About the deaths of grandparents, parents, and other adults:Barron, T.A. (2000). Where Is G ra ndpa ?Bunting, E. (1982). The H appy Puneral.Dickerson.I, G. (1995). Grandpas Berries : A S tory to H elp Children U nder-s tand G rief and Los s .Douglas, E..(1990). Rachel and the U ps ide D ow n H eart.Evarts, D. M. (1998). The B utterfly B us h: A S tory a bout L ove.Godfrey, J . (1996). The C herry Blos s om Tree:A Gra ndfa ther Ta lks a bout L ife

a nd D ea th.Hanks, B. H. (1996). G reen M ittens from G randma: A G entle S tory about a

Chi ld 's G riefHopkinson, D. (2001). Bluebird Summer.Hucek, M. W. (2002). L ila cs for G ra ndm a.Klein, 1. (1995). The Bes t G ift for M om .Lowden, S. G. (1993). Emily 's S adha ppy S ea son.Marshall, B. (1998). Anima l Crackers : A Tender Book about D eath and Fu-

nera ls a nd L ove.McLaughlin, K. (2001). The M emory Box.


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BOX 1 2 . 3 continuedSelected Literature for Children about Death, Dying,and BereavementAbout the deaths of grandparents, parents, and other adults: (continued)

Mills, L. (1991). The Rag Coat.Morning, B. (1994). Grandfa th er's S h ir t.Newman,1. (1995). Too Far Aw ay to Touch.Plourde, 1. (2003). Tha nk You, G ra ndpa .Powell, E. S. (1990). Gera ni um Mo rn in g.Russo, M. (1996). GrandpaAbe.Santucci, B. (2002). Anna 's C orn.Simon, N. (1979). We R em em ber P hilip.Tiffault, B. W. (1992). A Quilt for E li za beth.Vogel, R. H. (2002). The S nowman.Wrenn,E. (2001). The C hris tm as C actus .Zebrowski, M. (2002). Bnbka 's S e renad e.

About the deaths of siblings, peers, and other children:Alexander, S. (1983). Nadia the Wilful.Bunting, E. (1999). Rud i': P on d.Coburn, J . B. (1964). Annie and the Sand Dobb ie s. A S tory a bout D ea th for

C hildren a nd Their P arents .Co err, E. (1977). Sadako and the Thousand Paper Cranes .Smith, D. B. (1973). A Ta s te o f B lackber ri es .T em es, R . (1992). The E mpty Place: A Childs ' Guide th ro ug h G ri efTurner, B. J . (1996). A Little B it of R ob.

About postdeath events and confronting fears:Arnold, C. (1987). What W e Do When Someone D ies .Coleman, P. (1996). "Where the B alloons G o.Goldman, L. (1997). B art S pea ks Out: An Interactive S torybook for Young

C hildren a bo ut S ui ci de.Hemery, K. M. (2001). The H ea ling Tree.Johnson, J . (2001). The V ery Bea utiful D ra gon.Kadono, E. (1999). Gra nd pa 's S ou p.

a process through which adults strive to grasp the real concerns of a child and toavoid responding with unnecessary, misleading, or unhelpful information. By em-ploying language that is meaningful to children, one can minimize confusion of thesort generated by a priest inAgee's A Death in the Fam ily (1969), who tried to ex-plain that God had taken the children's father because he had had an "accident:' Thepriest was using this word to mean a fatal automobile mishap, but the children understood it to mean a loss of bladder control, and the adults never realized how fool-ish and perhaps frightening their message about God's responses to wetting yOUIpants seemed to the children.

336 PARTFIVE DevelopmentalPerspectives


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BOX 12.4Selected Literature for Adults about Children and DeathCorr, C.A., & - Con, D. M. (Eds.). (1996). H andbook of Childhood D ea th and

Bereavement. A comprehensive resource for understanding and helpingchildren intheir encounters with death and bereavement.

Christ, G. H . (2000). H ea ling C hildren's G rief S urviving a P arent's D ea thfrom C ancer; Davies, B. (1998). Shadow s in the Sun: The Experiences ofS ib ling B erea vem ent in C hildhoedj Silverman, P. R. (2000). N ever TooYoung to K now : D ea th in C hildren's L ives ; Worden, J . W. (1996). Childrenand G rief: W hen a Parent D ies . Four expert authors guide professionals inunderstanding and helping bereaved children.

Grollman, E.A. (1990). Ta lking about D ea th: A D ia logue betw een P arent andChild (3rd ed.), Principles for helping children, a passage to be read to-gether with a child, and guidelines for responding to questions.Emswiler, M . A ., & - Emswiler, J . P. (2000). Gu'id ing Y our Child thro ugh G rief;Fitzgerald, H. (1992). The G rieving C hild: A P arent's G uide; Johnson, J .(1999). Keys to H elping Children D ea l w ith D ea th and G rief; Schaefer, D .,&Lyons, C. (2002). How Do We Tell The C hildren? A S tep-by-S tep G uidefor H elping Children Tw o to Teen Cope w hen Someone D ies ; Trozzi, M., &Massimini, K. (1999). Talking w ith C hildren about Loss . Five practicalbooks offer useful advice for parents and other helpers.

Rudman, M. K., Gagne, K. D., & - Bernstein. J . E. (1993). Books to H elp Chil-dren Cope w ith Separa tion and Loss (4thed.; vols. 1& 2 by Bernsteinalone, 1977, 1984; vol. 3 with Rudman, 1989.). Informed and sensitivedescriptions of hundreds of books for children. Broad topical range, keenevaluations, and guidance about how to use books to help children.Additional information about death-related literature for children and

sources from which books and other items can be purchased are provided by:Boulden Publishing, P.o. Box 1186, Weaverville, CA 96093-1186; 800-238-

8433; fax 530-623-5525; www.bouldenpublishing.com (offers Bouldenpublications exclusively).Centering Corporation, P.O. Box 4600, Omaha, NE 68104-0600; 402-553-

1200; fax 402-553-0507; www.centering.org; e-mail to [email protected](offers their own and other publishers' works).

Compassion Books, 477 Hannah Branch Road, Burnsville, NC 28714; 828-675-5909; fax 828-675-9687; www.compassionbooks.com; e-mail [email protected] (offers their own and other publishers' works).

Effective communication avoids euphemisms and inaccurate or inconsistentanswers because they so easily lead children into misunderstandings that may bemore disturbing than the real facts. More important, effective communication isdependable: the child must be able to rely on what is said, even if it is not the wholeof the available truth. Honesty encourages trust, the basis of all comforting rela-
http://www.bouldenpublishing.com/mailto:[email protected]:[email protected]:[email protected]:[email protected]://www.bouldenpublishing.com/


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B O X 12.5Some Guidelines for Adults in Using Death-RelatedResources with Children1. E va lua te the book or other res ource yours elf b efore a ttem pting to us e it with a

child. No resource suits every reader or every purpose.2. Se le ct r es ource s, topi cs , and approaches that suit the needs of th e ind ivid ua lchild. To be useful, 'any resource must meet the needs of a particular child.3. Be prepared to cope with limitations. Every resource is likely to have both

strengths and limitations. Adapt existing resources to individual purposes.4. Match m ateria ls to the capacities of the in divid ua l ch ild . Stories, pictures,

music, play, drawing, and other options must suit the child's abilities. Forexample, inusing literature, determine the child's reading or interest level.Direct a precocious child to more advanced materials; direct some olderchildren to less challenging titles or invite them. to join inpartnership withan adult to assess the suitability of simpler materials for younger readers(Lamers, 1986,1995) so their abilities are Hot directly challenged by mate-rials that are too difficult for them.

5. Read or work along with children. Seize opportunities for rewarding inter-actions and valuable teachable moments" from which all can profit (Car-son, 1984). Show interest in the child, provide interpretations as needed,and learn from the child.

explanations that one really does not believe. After all, even good communicationcan be limited, fallible, and subject to error, as in the case of the children who wereeager to attend a funeral in order to see the "polarbears" who would, so they thoughtthey had heard, carry the casket (Corley, 1973; see also Brent, 1978). Although thispiece of miscommunication is delightful in some ways, it reminds us that childrenmay not always correctly grasp what they are told. To minimize misunderstandingabout death, adults should try to communicate effectively and they should check todetermine what a child has grasped by asking the child to explain what he or she un-derstood from the message.

Adults must also consider that children communicate in many ways and atmany levels (Kubler-Ross, 1983). They might use (1) symbolic nonverbal commu-nication-which might take place through artwork of various types; (2) symbolicverbal communication-in which indirect comments about imaginary friends oranthropomorphized figures may really have to do with the child's own concerns;and (3) nonsymbolic verbal communication-which most resembles literal inter-changes between adults. Symbolic communication through art or other media marbe particularly important for deep-seated or emotionally charged concerns inyoung children who lack many verbal skills (Furth, 1988). This was evident in thecase of one 6-year-old child who, while he was dying, drew a series of pictures ofships-smaller and less colorful ships on a progressively darker background as theillness advanced (Grove, 1978).

Validation is a third important element of prior preparation, as well as of supportfor ill, dying, and bereaved children. Metzgar and Zick (1996) link this to a Native-



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American belief that says: If you give something a name and a shape, you can have pow erover it. However, i f i t remains nameles s a nd s ha peles s, i t w ill continue to have pow er overyou. Children who are striving to cope with death-related encounters need validationfor their questions, concepts, language, and feelings. Adults can validate these andother aspects of children's death-related experiences by acknowledging them for whatthey are in a nonjudgmental way. Acknowledgment gives permission to explore whatis confused and not yet well articulated. Sharing in such a process is empowering; cor-recting or "fixing" it is likely to be mistaken and harmful.

Helping III or Dying ChildrenThe following principles for communication with ill Of dying children provide asolid foundation for helping (Stevens, 1998):

1. First, determine the child's own perception of the situation, taking into ac-count his or her developmental level and experience.


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5. Promote self-esteem through mastery of age-appropriate tasks and activities.6. Make no assumptions about what the situation will entail; be open to wlw

each encounter can teach; do not underestimate the child's ability to masterlife's challenges creatively and with humor and dignity.

Perhaps the best programs of care for illand dying children (and their family memobers) are those that rely on the p r i n c i p l e s of pedia tri c hospice orpallia ti ve c a r e . The eachimpetus for the development of programs like these carne from a project on home Cartfor dying children and their families inMinnesota (Martinson, 1976) and the estab-lishment of Helen House in Oxford, England (Worswick, 2000). In both cases, the em-phasis was on a holistic program of child- and family-centered care (Davies & Howell1998). The Minnesota project demonstrated that for some children and families it w e nboth feasible and desirable to take a child home to die. To do this, most families neededpreparation for what they might expect to encounter, guidance on how to respond, a n dsupport to mobilize their own resources, as well as supplementary assistance to provideneeded services. In a parallel way, Helen House confirmed the importance of skilledrespite care for families facing the difficult challenges of o r r e or more children with achronic, life-limiting, or life-threatening illness..Key points in all of this are the recog-nition by parents of their need for pediatric palliative care, their willingness to enter intosuch care, and their evaluations of the services received (Centro, Larson, Scofield.Sourkes, & Cohen, 2002; Wolfe et al., 2000b).

More recently, programs of ped ia tr ic pa lli a ti ve care have applied hospice prin-ciples to a wide variety of situations involving children with life-limiting or life-threatening conditions (Armstrong-Dailey & Zarbock, 2001; COlT & Corr, 1985a.1985b, 1985c, 1988, 1992b). This has been achieved in many different ways (for ex-ample, at home, througb respite care, in a medical facility) and with various typesof staffing (for instance, hospital, hospice, or home care personnel) (Davies, 1999;Howell, 1993; Himelstein et al., 2004). Applying these principles in neonatal inten-sive care units (Siegel, 1982; Whitfield et al., 1982) demonstrates that it is not thesetting that is critical but the focus on holistic care for the ill child and on family,centered care for parents, siblings, and involved others (Stevens, 1993).

The needs of children who are approaching the end of their lives, as well as thoseof their families, have now been well documented (e.g., American Academy of Pedi-atrics, 2000b; Field & Berhman, 2003). Children's Hospice International ( w w w .chionline.org, e-mail = [email protected]; tel. 800-24-CHILD or 703-684-0330) andthe ChiPPS project (Children's Project on Palliative/Hospice Services; [email protected]) of the NHPCO (tel, 703~837-1500; www.nhpco.org) have acted as advo-cates on behalf of these children and families. Training curricula have been publishedto prepare individuals for this work (Education Development Center, 2003; ELNEG,2003; NHPCO, 2003)' along with a manual on how to develop a home-based supportprogram for children and adolescents with life-threatening conditions (NHPCO, 2004).Moreover, a significant number of books have been published to guide both parentsand professional providers in the delivery of this type of care (e.g., Carter & Levetown,2004; Goldman et al., 2005; Hilden & Tobin, 2003; Huff & Orloff, 2004; Orloff & Huff,2003). And numerous publications have focused on the development of partnershipswith ill children, good communication, and the implementation of hospice like princi-ples in oncology and other forms of pediatric care (e.g., Wolfe et al . , 2000a; Young,Dixon-Woods, Windridge, &Heney, 1999,2003).

mailto:[email protected];mailto:[email protected];


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A useful supplement to the services involved in pediatric care is found inRona ld M cD ona ld H ouse programs in many communities. These programs provideeconomical, convenient, and hospitable places where families can stay while a childis receiving treatment in a pediatric medical facility. This service minimizes familydisruption, reduces financial and logistical burdens (such as those involving travel,finding lodging, preparing food, and doing laundry), and permits constructive in-teractions (if not formal counseling) both within and among families who are fac-ing difficult challenges in childhood illness.

Helping Bereaved ChildrenThe task-based models described earlier for understanding bereaved children (Corr& Corr , 1998b; Fox, 1988a, 1988b; Trozzi &Massimini, 1999;Worden, 1996) pro-vide a natural agenda for adults who are helping individual children. All bereavedchildren need information as a foundation for effective grief work. They may needto know about death itself or about the facts surrounding a specific death, or theymay need information about common reactions to loss or about coping with deathand grief. Adults can provide such information and, in so doing, share their owngrief and model good coping strategies. To do this, they must try to view the lossfrom the child's perspective.For example, adults often fail to appreciate the importance to a child of the deathof a friend or pet (Butler & Lagorri, 1996;Lagoni et al., 1994;Toray & Oltjenbruns,1996).Also,bereaved adults may all too easilyoverlook a child's grief on the death ofa sibling (Davies, 1998). In each case, it is the relationship inall of its many dimen-sions---comparrion, buffer, protector, comforter-that ismost important to the child.Adults do well to honor these losses rather than brush them aside as trivial. Respectfor the child's experiences can be expressed in attention, honesty, avoidance of eu-phemisms, support, and (wherever possible) encouragement of the child's involve-ment in the death and subsequent memorialization.In all deaths, good memories are as important to bereaved children as they areto adults (Christ, 2000; Jewett, 1982).When possible, one should strive to lay downa fund of such memories before loss or death occurs and help a child while some-one else is dying (Smith, 2000). Even when that is not possible, as in cases of unan-ticipated death, an adult might work with a child after a death to develop andarticulate the elements of a legacy that the child can carry forward into the future->for example, by examining a scrapbook or photo album depicting the life of the de-ceased, or by sharing events from that life in which the child might not haveparticipated. Helping bereaved children might also include assembling a memorialcollage, donating to a worthy cause, or planting a living memorial.In recent years, some have questioned whether children should take part infuneral and burial practices (Corr, 1991;Weller, Weller, Fristad, Cain, & Bowes,1988). Suggestions like Grollman's (1967, p. 24) that "from approximately the ageof seven, a child should be encouraged to attend" have been misinterpreted tosupport the viewpoint of Allison's father near the outset o f this chapter that chil-dren under the age of 7 should be prohibited from attending funerals. In fact, re-search (Fristad, Cerel, Goldman, Welle)',& Weller, 2001; Silverman &Worden,1992b) has shown that taking part inbereavement rituals can help children with


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A "teachablemoment" cantake placewhen a youngchild is allowedto take part inhis grandpar-ent's visitation.

A basic rule is that no child should be forced to take part in any experience thawill be harmful (Emswiler &Emswiler, 2000). However, harm need not OCCllI wheeadults act on themes underlying al l of the suggestions we are describing: priorpreparation, support during the event, and follow-up afterward. The child shoulbe told ahead of time what will occur at the visitation, funeral, or burial; why we eo-gage in these activities; and what his or her options are for participation. If the chi!chooses to take part in some or all of these activities, a caring adult should attend u,his or her needs during the event. This adult must not be wholly absorbed in per-sonal grief and must be free to accompany a child who might need to arrive late o~leave early. After the event, adults should be available to discuss with the child his ..her reactions or feelings, answer any questions that might arise, and share their m\responses to what has taken place.

Concerns about disruptive behavior by children are no more unique to funer-als and burials than they are to graduations and weddings. They can be addresby providing a special time for children to come to the funeral home when adulare not present or by limiting the roles of the children at the funeral service or bur-ial to those that are appropriate to their interest in and tolerance for public ritualAs Crase and Crase (1976, p. 25) noted: "The wise management of grief in childrenrevolves around the encouragement and facilitation of the normal mourningprocess while preventing delayed and/or distorted grief responses."

S uppo rt gro ups fo r b erea ved child ren can assist normal mourning processes aftera death (Bacon, 1996; Heiney, Dunaway, & Webster, 1995; Hughes, 1995; Zambelli& DeRosa, 1992). Two good models are found in The Dougy Center: The Nationa.Center for Grieving Children and Families (3909 S.E. 52nd Avenue, Portland, OR97286; tel. 503-775-5683; www.dougy.org) in the United States and Winston's Wish



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Allowing chil-dren to partici-pate in amemorialritual-forinstance, by re-leasing balloonsin memory ofsomeone whohas died--canassist them intheir mourning.

in Cheltenham, England (The Clara Burgess Centre, Bayshill Road, Cheltenham,UK GL50 3AW; www.winstonswish.org.uk). The Dougy Center, founded in Decem-ber 1982 by Beverly Chappell (Chappell, 2001; Carr et al., 1991), operates groupsfor children as young as ages 3 to 5 (Smith, 1991) and as old as 19, including groupsfocused on the death of a parent or caregiver; a brother, sister, o r close friend; sui-cide; and homicide. Italso offers concurrent groups for parents or other adult care-givers of the children being served. Winston's Wish, founded in 1992 by Julie Stokes(2004), offers a distinctive program of residential weekends (Stokes & Crossley,1995), along with groups for families affected by suicide, services to schools, na-tional training programs, an interactive Web site for adolescents, and a nationalhelpline inEngland. Both programs offer a wide range of helpful publications andother resources.

Each of these programs is firmly grounded in its respective communities. Bothemphasize that grief is a natural reaction to loss-for children as well as for adults.F o r that reason, both programs try hard not to stigmatize the bereaved children andadults whom they serve. Their goal is to offer supportive and preventive care. Theyhonor the natural capacity to mourn in each individual and try to be available toeach child and to trust his or her mourning process. Essentially, they walk alongsideeach child and uphold the vision that he or she will once again be able to find a wayin life-veven while remaining alert for signs of complicated mourning processes.

Many other support groups for bereaved children see themselves as functioningin a more traditional counseling role and adopt a more structured, time-limitedagenda for group meetings (for example, HassI &Marnocha, 2000). A body of litera-

CHAPTER 12 Children 343


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ture describing activities that can be used with bereaved children in all of these pro-grams is available for adult belpers (for example, McWhorter, 2003;Whitney, 1991).Children may also be affected by traumatic death in the form of a homicidesuicide, or mass death caused by a natural disaster or some other form of violent 0catastrophic event (Nader, 1996; Osofsky, 2004), such as the terrorist attacks on theWorld Trade Center and the Pentagon on September 11, 2001. Especially whegroups of children are involved, it is often important to consider programs 0

postvention. This term, coined by Shneidman (1973b, 1981), was originally applito interventions designed "to mollify the aftereffects of the event in a person whhas attempted suicide, or to deal with the adverse effects on the survivor-victims aa person who has committed suicide" (1973b, p. 385). However, the concept 0postvention and other forms of assistance for children have since been expandedapply to interventions before and after the fact that focus on children immediatehor indirectly affected by a broad range of traumatic losses (Goldman, 2001, 2004).Principles for postvention with children include (1) beginning the interventionas soon as possible, (2) implementing a comprehensive and coordinated plan in-volving affected persons and using relevant resources in the community, (3) pro-viding supportive and caring assistance, (4) anticipating resistance or anunwillingness to cooperate from some persons, (5) expecting individual variationsin the nature and timing of traumatic responses, (6) being alert for exaggerated re-sponses that may place an individual's life or health in jeopardy, (7) identifying anchanging potentially harmful aspects of the immediate environment, and (8) ad-dressing long-term issues (Leenaars &Wenckstem, 1996). Ideally, postvention anall other programs of crisis intervention for children should be based on prior plan-ning in schools and communities (Klicker, 2000; Lerner, Volpe, & Lindell, 2003;Rowling, 2003; Stevenson, 2001). Such programs should be led by a professionwho is well grounded in the principles of child development, in issues of copinwith loss and grief, and in the special features of crises and trauma. Where groupapproaches are inappropriate or insufficient for a particular child, individual psy-chotherapy will be indicated-even for a very young child (Lieberman, ComptonVanHorn, & Ippen, 2003;Webb, 2002).

In this chapter, we studied interactions between children and death in our Ameri-can death system. We described distinctive developmental tasks of childhood asbackground for exploring death-related experiences during childhood. In particu-lar, we noted that death rates among infants and toddlers are high, mainly arisingfrom congenital malformations, disorders related to short gestation, sudden infantdeath syndrome, and accidents; in preschool and school-age children, death ratesare much lower, resulting more often from accidents and diseases like cancer. Wepaid special attention to children's efforts to develop an understanding of the con-cept of death and its principal subconcepts, as well as to the development of death-related attitudes in childhood.Next, we explored children's efforts to cope with life-threatening' ess, dying,and bereavement. That led us to discuss how to help children cope with death, dy-

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Death and Dying Life and Living

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