memorial service for families of children dying from cancer or hematologic disorders

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Journal of Pediatric Oncology

http://jpo.sagepub.com/content/13/2/72The online version of this article can be found at:

DOI: 10.1177/104345429601300204

1996 13: 72Journal of Pediatric Oncology NursingSue P. Heiney, Linda Wells and Julian Ruffin

A Memorial Service for Families of Children who Died From Cancer and Blood Disorders

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A Memorial Service for Families of ChildrenWho Died From Cancer and Blood Disorders

Sue P. Heiney, RN, MN, CS, Linda Wells, RN, MA, CNA,

and Julian Ruffin, PhD

From the Center for Cancer Treatment and Researchand Childrens Center for Cancer and Blood Disorders,Richland Memorial Hospital, Columbia, SC.Address reprint requests to Sue P. Heiney, RN, MN, CS,Center for Cancer Treatment and Research, Richland

Memorial Hospital, Seven Richland MedicalPark, Colum-bia, SC29203.

1996 byAssociation of Pediatric Oncology Nurses.1043-4542/96/1302-0002$3.00/0

The grief of staff who work with dying children and the grief of family membersafter the death of a child has been widelydocumented. Interventions to facilitate

grieving have been extensively developed for parents but less so for siblings andstaff. This article describes one approach, a memorial service, for families andstaff that has wide applicability for providing support after a death. Thememorial service provides families and staff with a healing ritual of remem-brance, a source of closure after the death, and a recognition ofthe relationshipsestablished between families and staff. The service particularly legitimizes thestaffs grief experience. The organization, implementation, and evaluation ofsuch a program is discussed.

1996 byAssociation of Pediatric Oncology Nurses.

THESTAFF of the Childrens Center for

i. Cancer and Blood Disorders wanted todevelop a bereavement program for patientsand families. When families were informallysurveyed using a simple feedback form re-

garding their bereavement needs, their majorconcern identified was the sense of beingabandoned

bythe treatment team who had

cared for their child for many years. The

relationships that developed were an impor-tant source of support for the families duringthe treatment process, and they expectedsimilar support after the death. Treatmentteam members were viewed as extended

family. Similarly, staff needed a way to haveclosure on the intensely personal relation-

ships they had formed. Yet such a closurewas difficult when staff were daily confront-

ing the need to care for new patients. In

response to this need, the staff planned and

implemented a bereavement group for par-

ents, extended families, and siblings in 1986that met biweekly for eight sessions. 1,2 How-

ever, several logistical difficulties, such asdistance from treatment center and small

number of children who died each month,precluded the establishment of an ongoinggroup. Therefore, the staff developed a fol-

low-upbereavement

programto ease the

transition for the bereaved family from thestaff to the natural support systems withinthe home community.3 In 1987, as a part ofthis program, the staff initiated an annual

memorial service with a twofold purpose: to

convey to the family that the child was stillremembered and to provide the staff with adesignated time for closure. Since that time,eight services have been held. This articlereviews the literature on grief in staff andfamilies and the use of ritual in mourning,and describes the planning, implementation,

and evaluation of the program.

Literature Review

To develop a memorial service that waswell grounded in an understanding of thegrief process, the literature related to staffand family griefwas explored. Information onritual as a way of resolving grief was alsoobtained.

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Staff Stress and Grief

The stress experienced by oncology staffand the potential for burnout, especiallyamong nurses, has been extensively docu-mented. The stress may be caused by theinfluence of the job on interpersonal relation-ships, reservations about developing relation-ships with patients, emotional involvement,finding value in ones work, and difficult

patients.1.4-6 Sources of stress for caregiversmay include the decline of a patient withwhom staff had strong attachments, hope fora cure, and a sense of responsibility for thedeath.7 Myriad emotional and troublesomesymptoms are both sources of and reactionsto stress.8-9 These symptoms include being

drained and emotionally used up, guilt, self-doubt, confusion, anger, helplessness, anddepression. Because staff develops intimate

relationships with the patient and family,2 the

severing of these relationships at the death ofthe patient is a major source of grief for staff.Pediatric oncology nurses continually facethis kind of stress and may grieve repeatedly.Their grief needs to be addressed during theactual caregiving time and after the death ofthe patient. Paradoxically, these staff mem-bers may find themselves in the role of

providing bereavement care to the familywhile needing support and comfort for them-selves. 1,1 Therefore, staff need support strat-

egies that focus on resolving their grief in a

positive manner. Research suggests that rec-

ognition of the role and significance of staffstress with dying patients is important inplanning approaches for supporting the care-giver.12

Family Reactions to Loss

In working with grieving families, a criti-

cally importantframework for

developinginterventions is the family system.13 Familiesfunction as a system composed of individu-als with unique personalities. Each memberhas his or her own identity and role within the

family system. When a member dies, thesystem becomes disrupted. The survivingmembers experience a void and an empti-ness. Often the stability of the family systemmay be threatened.14 The family is even

more stressed when a child has died. The

literature reports that the death of a child isconsidered the ultimate tragedy.15 Each fam-

ily member reacts to the childs death in his

or her own way. Coping with the loss and thefeelings that arise differs from person to

person.16Parents. Parental grief is filled with intense

emotions. Parents may have a desperateneed to remember their child and to talk to

someone who truly understands the circum-stances of the childs death.2,1?,18 The par-ents may become so preoccupied with theirown grief that other family members, eventheir surviving children, may be closed out or

forgotten.

Siblings. The death of a brother or sisterduring childhood can be traumatic. The sur-

viving child often hides his or her grief in aneffort to protect the fragile parents fromfurther distress. In Rosens9 work, she foundthat a central theme in sibling loss is a

prohibition against mourning. Often the sur-

viving child is encouraged to be strong andsilent instead of being allowed to rememberthe deceased or express feelings. In this

environment, the grieving sibling cannot ac-cess interventions needed to help cope withthe loss of a

sibling.2 Therefore, ,acritical

need is that grieving siblings be provided withways to accomplish the tasks of mourning.

Activities that promote acknowledging and

accepting the loss, and facing and bearingthe pain are helpful in grief resolution.21Extended family. The extended family ofa

deceased child is often left to deal with their

grief alone. The term &dquo;forgotten grievers&dquo;22has been used to describe those family mem-bers, but little work has been directed toward

helping them cope.18 Grandparents have re-ported the death of a grandchild as a double

grief experience. They feel grief for both theirown child who is undergoing this ordeal andfor their beloved grandchild. The grievingprocess may be intensified for grandparentsand other extended family members because

they do not have the same bereavement

follow-up opportunities provided parents andsiblings. Therefore, health care profession-als need to reach out and assist the extended



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family members as they try to cope with theirgrief.

Rituals for healing

All societies practice rituals, and theseactivities have been traced back some 60,000years to the time of Neanderthals.23 Histori-

cally, rituals have been used to acknowledgesignificant moments of development includ-

ing death.24 Rituals are behaviors or activitiesthat provide a symbolic expression tothoughts and feelings. Such activities can beone-time occurrences or repetitive behav-iors. Rituals have numerous benefits for the

participants. They provide a sense of orderand comfort during times of instability, tur-

moil, and grief.25,26 Rituals have the magicalquality of both announcing and creatingchange.27 Also, they reflect changes thatalways involve both beginnings and endingsas well as joy and pain concurrently.28 Partici-

pating in a ritual provides a strong healingexperience that symbolizes transition, heal-

ing, and continuity.z~ The curative power ofrituals is that they connect people with asense of forgiveness, compassion, and anawareness that people are more alike thandifferent.28Use

of ritualin

grief andbereavement. Ri-

tuals provide one method of grief resolution.Two types of rituals are typically associatedwith death: the funeral and the memorial

service. These rituals seem to meet certain

universal human needs, such as confirmingthe reality of death, assisting in the expres-sion of feelings, stimulating memories of thedeceased, and providing support to the fam-

ily and friends of the deceased.23 Both ofthese rituals support grief resolution by initi-

ating tasks of grieving including providing a

symbolic acknowledgment of the severing of

the relationship and support for readjustmentto the environment in which the deceased is

missing.113Funeral. Burial ceremonies or funerals

have been practiced since the earliest timesas a means of honoring the dead and helpingsurvivors.z~,3o The major function of a funeralis as a rite of passage.8 The funeral has thepower to transform isolation into community,

to thaw frozen feelings of grief into a revital-ized sense of caring, and transform the lossof a child to death into an embrace of a

childs life.24

Memorial service.A memorial service isone type of funeral. The distinguishing char-acteristics of a memorial service are the

absence of the body and the focus on life as

opposed to death.23 There has been some

concern expressed that funeral rituals occurtoo soon after death. Consequently, the survi-vors may still be in a state of shock and not

able to benefit from the service. This concern

suggests the value of providing continuedrituals throughout the mourning process, suchas the Roman Catholic anniversary mass and

the Jewish unveiling, which occur a yearafter the death.23A memorial service allows

families, friends, and health care providers to

experience a sense of healing and connec-tion to their community during times of be-reavement. 28,31The literature on staff stress and grief,

family grief, and rituals served as a frame-work for developing a memorial service forfamilies and staff. This information was used

in the planning and implementation of the

program. The memorial service encom-

passes both families and caregivers andserves a dual purpose ofsupporting both the

family and the staff, and connecting them

through a healing ritual. The service providesstaff with a concrete way to minister to the

families and helps minimize feelings of fail-ure related to the death.

Planning

Preparation for the memorial service in-volved establishing the goals and objectives

for the service as wellas

setting upa

timelineand implementing the organizational stepsnecessary for a smooth program.Althoughone staff member serves as logistical coordi-

nator, the entire staff (nurses, social worker,physicians, clerical staff, and child life spe-cialist) of the Childrens Center for Cancerand Blood Disorders is involved in develop-ing and implementing the service.



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Philosophy and Goals of Service

The fabric of the service was woven from

several principles and goals that reflected theoverall

philosophyof the service. The idea of

&dquo;a joy shared is multiplied and a grief sharedis divided&dquo; was a guiding principle in develop-ing the service. The service was visualized asa time that would give families a legitimatereason for returning to the treatment center, aritual of remembrance and closure, and a

public recognition of the bonds that had beenestablished between families and staff.Also,the service provided similar benefits to staffto aid them in grieving children who had died.The staff wanted a service that did not seem

to be a funeral but instead was uplifting,

reflective, and healing. The purpose was notto prevent feelings ofsadness and grief but to

give them a new avenue of expression.Anonsectarian service was desired so that

everyone would feel comfortable attendingregardless of religious affiliation or ethnic

background.

Logistical Details/Timeline

Many logistical details must be attended toin planning a memorial service. Some of thedetails were determined by convenience or

necessity. Otherswere

determined to sup-port the attainment of goals. The date chosenwas the Sunday closest to NationalArborDay in keeping with the garden, life-cycletheme. Two major details, site selection andgraphic design/printing, are discussed laterto aid others who may be planning a similar

program.A timeline is also given in Table 1to provide planning information and details.Many bereaved families find it difficult to

return to the treatment center. However, thestaff decided to have the service in the main

auditorium of the hospital. This central loca-

tion was familiar to the families but was notlocated in the same building as the treatmentcenter.Another reason for selecting the hos-

pital was to integrate the planting into theservice and provide a garden location where

family members could return as they desired.The staff wanted the service to include the

planting of a flowering tree or shrub to sym-bolize hope and rebirth.

TABLE 1.

Timeline

Graphic design and program printingare

another important element involved in pro-gram implementation. The invitation and pro-gram were designed to enhance the meaningof the service, provide remembrances, andreflect the goals of the service. Therefore,much thought and time were invested in the

graphic design, layout, and wording of thetwo pieces. The artwork on the invitation and

program use similar graphic features. Forseveral years, a photograph of a bloom fromthe planting was used. More recently, the

design has featured children flying a kite. The

kite is used as a symbol of hope (Fig 1 ).Purple, a traditional color of mourning, isused as an ink color.

Mailing lists for the invitations includedparents of honored children, parents of chil-dren previously honored, hospital and can-cer center staff, appropriate communitymembers, and special friends. Parents of thechildren being honored receive a letter and



6/9

76

FIGURE 1.

Invitation. (Reprinted with permission from the Center for Cancer Treatment and Research, Richland MemorialHospital, Columbia, SC) .

enclosure of five invitations. These invita-

tionsare

to be given by the parents toextended family members and friends. Fami-lies may request more than five invitationsbut are asked to have all guests respond if

they plan to attend.

Description of Seroice

To achieve the established goals, the staffdetermined that the service should include

music, an uplifting meditation, an opportu-nity to reflect on memories of the deceased

children, a memorial planting, and a child

recognition.Also,the staff wanted to

giveeach family a special memento to remindthem that their child was special to the staffand that the staff still cared about the family.

An example of the order of service is shownin Table 2. One aspect of the service that is

integrated throughout is the use of music.Music is used initially to create a hopeful andsoothing environment, and later to reinforcethe various components of the order of ser-

vice. The music is provided by a vocalist who

accompanies himself ona

guitar.A

variety ofsongs has been used over the years of the

service. The criteria for choosing the songsare that they are largely nonsectarian andreflect the purpose of the service. Examplesof songs used include &dquo;Celebrate the Times,&dquo;&dquo;Thats What Love Is For,&dquo; &dquo;Eulogy,&dquo; &dquo;I Will

Always Remember You,&dquo; and &dquo;Aloha.&dquo;

TABLE 2.

Order of Service

____



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77

A reflective mood is set by using, quiet,meditative music accompanied by a slideshow that features nature scenes of the four

seasons that begins about 15 minutes before

the service. Greetings are extended by themedical director and the administrative man-

ager of the center. The greetings emphasizeboth the pain of grief and the joy of sharedmemories. They stress the value, unique-ness, and contribution of each child and

family in the continuing battle against cancerand blood disorders.

The memorial meditation is generally deliv-ered by a staff member or a volunteer whohas a close connection with the children and

their families. The purpose of the meditation

is to honor thememory

of the children and to

focus on hope for the families.As our fami-lies come from many religious backgrounds,the meditation does not espouse a particulartheological perspective.After the meditation, the participants areled in an activity to help them focus on a

specific memory of the child they came tohonor. Each person present at the memorial

c

service is encouraged to write a specialmemory on a card with a picture of children

flying kites. This part ofthe service offers the

participants a new avenue for expressing

their feelings. These cards may remain pri-vate or be shared with others, and may be leftfor placement in the memory book: Thememory book contains pictures, poems, ar-

ticles, and other items pertaining to the chil-dren that families have contributed.As fami-

lies from past services still attend this service,all of our memory books are available before

and after the service for families, staff, and

guests to peruse.After a benediction, the service moves into

the garden area.A memorial planting, re-

sponsive reading,child

recognition,balloon

release, and song conclude the program.During an informal evaluation session afterthe first support group, staff brainstormed

ways to acknowledge both the close ties thatfamilies felt with the staff and the hospital,and that the life ofthe child was remembered.

An idea was born to establish a garden inwhich a planting could be done during theservice.A proposal was made to hospital

administration who agreed that a plantingcould be done if the plants met the approvalof the groundskeeping staff. For the firstseven services, a tree or shrub was pur-

chased before the service, and the grounds-keeping staff prepared the site.At the latest

service, the families were given a floweringplant like the flower bed of annuals at a

designated site in the garden. The staffmem-ber who is coordinating this part of the ser-vice discusses the meaning of the plantingand the garden, and reads a short medita-tion. Siblings are especially invited to shoveldirt into the prepared site around the tree or

shrub; others participate if they desire.The responsive reading acknowledges and

assures the families that the memories of the

children and their contributions will continue

to live. The reading of this by all the gatheredparticipants focuses on the guiding principleof &dquo;a joy shared is multiplied and a griefshared is divided.&dquo; The reading was adaptedfrom a closing response, &dquo;We RememberThem.&dquo;32

The child recognition identifies each child

individually. Each childs name is read, and a

family member comes forward to receive amemento and a balloon from the staff.Also,in some years, special friends or supportersfor the center who died in the p,ast year are

recognized. The memento generally is re-lated to the symbol for the center, a kite. Theballoon release takes place during the clos-

ing song and is a symbolic way for thefamilies to publicly say good-bye to theirchildren. Although the balloon release is

emotionally difficult, it is considered a thera-

peutic step in the healing process.

Follow-Up

After the service, the coordinator sends a

letter to each family who was unable toattend the service in which their child was

honored. In addition to the letter, staff en-

closes remembrances of the service. These

remembrances include a copy of the pro-

gram, inserts, and the take-home remem-

brance.



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78

Clinical Evaluation

Because of the nature of this service, staffhas been reluctant to conduct a formal writ-

ten evaluation of the program. Staff has feltthat this type of evaluation was not appropri-ate and would detract from the purpose of the

service. However, staff remains aware of the

importance of obtaining feedback about the

program, and the need to critique the pro-gram and monitor its quality. The programwas initiated to acknowledge formally theemotional bonds that had developed be-tween staff and families. Therefore, staffwants to continue to assess if the specifiedbereavement needs of the families are being

met through the service.Staff has conducted eight services. Several

approaches have been used to evaluate the

program informally. These include debriefingwith staff, obtaining informal feedback from

families, and conducting an informal processevaluation. The first service was particularlydifficult as 99 children were honored. Staff

had decided to honor all children who had

died since the beginning of the pediatriconcology program. Staff felt overwhelmed

just looking at the list and thinking about the

manychildren whom

theyhad cared for who

had died. Therefore, the coordinator infor-

mally encouraged staff to share feelings aboutthe service and explore the meaning of theservice to them personally as well as to thefamilies. These discussions allowed the coor-

dinator to assess staffs opinions about thevalue of the service to them and solicit

evaluation comments. Staff acknowledgedthe painfulness of the service and the emo-tional intensity, but were strongly supportiveof its value and wanted to continue next year.A second method of clinical evaluation

was to solicit family evaluations informally.At the end of the service, staff informallyinteracts with families. Most families sponta-

neously share the value ofthe service and its

meaningfulness to them, which suggests animmediate positive reaction.Also, staff hasnoted that some families return year after

year. Their return is to connect with staff and

show support to other grieving families. Some

families write letters of thanks after the ser-

vice. Comments included the following:

&dquo;I know planning the memorial service is

painfulbut

rewardingfor all of

you.&dquo;&dquo;The memorial service was sweet, movingand so meaningful.&dquo;

&dquo;I was touched by a wife who constantlyreached over and touched her husband

throughout the service. He cried openly. Iwondered if their loss was recent; their

emotion was so deep and yet after almostfive years there are times when I feel the

loss just happened.&dquo;&dquo;We are looking forward to the memorial

service. The first one was so sweet and

unforgettable; this one will be just as mean-

ingful to those parents who have lost achild recently.&dquo;

Finally, staff continuously assesses andevaluates the role of the service throughoutthe year during bereavement follow-up andsupport groups. Through the bereavementfollow-up program, staff has continued toreceive positive comments about the servicefrom families.

A third method of evaluation is to look at

the process and changes within the serviceover the years. Positive trends have been

noted. Staff meets after the service to debriefand discuss changes that may be institutedat the next service. Staff evaluations of the

personal value of the service are obtainedthrough staff meetings and planning ses-sions. Staff strongly supports the service andits value by including it as a repeat programwhen planning the next years psychosocialprograms.As the staff members have grown and

matured, they are more involved in planningof the service. Initially, staffs involvementwas

passive (eg, they might suggesta

songto be used or a speaker). The early involve-ment was more cognitive, making decisionsabout the service. Over time, they havebecome more actively involved in participat-ing and planning. Initially, staff was reluctantto be involved in the more public tasks of theservice. However, over time their comfortwith an active role in the actual service hasincreased. The most difficult part of the



9/9

79

service to present is the meditation; duringthe past four services, staff members have

presented it. Their increased participationseems to

providethem emotional

healingand an opportunity to comfort families.The service also provides an opportunity

for others connected to the children to expe-rience a healing ritual, and say good-bye andremember the child. Childrens hospital staff,

References

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the lives of many people.

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memorial service for families of children dying from cancer or hematologic disorders

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