Communication with the dying, the left behind, and the forgottenJocelyn Taylor, BS, CCLS

Lindsie Padden, BS, CCLS

Certified Child Life Specialists Child life specialists address the psychosocial

concerns that accompany health care experiences by promoting optimal child development and minimizing adverse effects.

Using play and psychological preparation as primary tools, child life interventions facilitate coping and adjustment under circumstances that might otherwise be overwhelming.

Bachelors degree in child development or related field

Field experience under supervision of a certified child life specialist ◦ 200 hour practicum◦ 600 hour internship

Certification exam

Forms of Communication

Verbal

Non-verbal

Therapeutic play

Medical play

Normalization play

“Play is the child’s symbolic language of self-expression and for children to ‘play out’

their experiences and feelings is the most dynamic and self

healing process in which children can engage.”

-Erik Erickson

Understanding of Death by Age

• Infants and Toddlers (0-2 1/2y)– Separation anxiety– Absorb parent’s emotions

• Preschool (3y-5y)– Temporary – Magical thinking

Understanding of death by age

• School Age (5y-11y)– Finality of death– Can explain difference between

living and nonliving

• Adolescent (12y-18y)– Abstract thinking– See life as fragile

Communication with the dying(Patient)

LanguageFirst conversationComprehension of tough

conversation

HonestyInclusion in conversationMedical staff awareness of patientPick up on social cues

Interventions for patientTools of communication

Including patients in care Explaining medical equipment

and proceduresEncouraging the patient to have a

voiceAdvocating for patient

WishesSilent childCulture/religion

Interventions for patientTools of communication

WorkbooksPrompts for writing, drawingHelp start conversations

Therapeutic activitiesSelf-expression

Interventions for patientTools of communication

Legacy Building

Interventions for patientTools of communication

Funeral Planning

Milestone celebrations

Communication with the left behind(Parents)

ConversationsEncourage honesty

DenialFamilies acceptance process

Interventions for parentsTools of communication

Rapport buildingSupportive Listener Realistic daily goalsHelping parents visualize future

Medical equipmentQuality of life

Identifying Social BarriersAdvocating for care conferencesEncouraging time with patient and

sibling

Communication with the forgotten(Siblings)

First ConversationAssessFill in the gaps

Honest and open communication

Ongoing process

Interventions for siblingsTools of communication

Family Centered-Care◦ Care conference

Conversations◦ Everyone processes differently

Therapeutic Activities◦ Memory making◦ Funeral involvement

Advocating for choices Normalcy Everyone processes differently Developmental Age of Sibling Resources/Workbooks

Obstacles to Communication

Society

Instinct

Medicine

Key points about communication

Silence is okay

You can’t change someone’s personality

Never a one time conversation

There’s no perfect way

No death process ever looks the same

Children often try and protect adults

Common Questions

Question #1: When do I tell the other

children?

Question #2: Should they attend the funeral?

Question #3: Is it OK for them to see the

body?

Question #4: Who should tell the children?

Question #5: What should I say to my child?

Question #6: Will my child need counseling?

References Bell, J. & Esterling, L. (1986). What will I tell the children? Omaha,

NE, University of Nebraska Medical Center Child life Department. Gaynard, J. Wolfer, J. Goldberger, R. Thompson, L. Redburn , & L.

Laidley (Eds., 1998), Psychosocial Care of Children in Hospitals: A Clinical Practice Manual from the ACCH Child Life Research Project (pp. 86-91). Rockville, MD: Child Life Council.

Rollins, J. A. (2005). Relationships in children’s health-care settings. In J. A. Rollins, R. Bolig, & C. C. Mahan (Eds.), Meeting Children’s Psychosocial Needs Across the Health-Care Continuum (pp. 493-515). Austin, TX: PRO-ED, Inc.

Wojtasik, S.P. & White, C. (2009). The story of child life. In R. H. Thompson (Ed.), The Handbook of Child Life (pp. 3-22). Springfield, IL: Charles C. Thomas.