C OMMUNICATION WITH THE DYING, THE LEFT BEHIND, AND THE FORGOTTEN Jocelyn Taylor, BS, CCLS Lindsie Padden, BS, CCLS

C ERTIFIED C HILD L IFE S PECIALISTS  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

F ORMS OF C OMMUNICATION 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

U NDERSTANDING OF D EATH BY A GE Infants and Toddlers (0-2 1/2y) – Separation anxiety – Absorb parent’s emotions Preschool (3y-5y) – Temporary – Magical thinking

U NDERSTANDING 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) Language First conversation Comprehension of tough conversation Honesty Inclusion in conversation Medical staff awareness of patient Pick up on social cues

Interventions for patient Tools of communication Including patients in care Explaining medical equipment and procedures Encouraging the patient to have a voice Advocating for patient Wishes Silent child Culture/religion

Interventions for patient Tools of communication Workbooks Prompts for writing, drawing Help start conversations Therapeutic activities Self-expression

Interventions for patient Tools of communication Legacy Building

Interventions for patient Tools of communication Funeral Planning Milestone celebrations

Communication with the left behind (Parents) Conversations Encourage honesty Denial Families acceptance process

Interventions for parents Tools of communication Rapport building Supportive Listener Realistic daily goals Helping parents visualize future Medical equipment Quality of life Identifying Social Barriers Advocating for care conferences Encouraging time with patient and sibling

C OMMUNICATION WITH THE FORGOTTEN (S IBLINGS ) First Conversation Assess Fill in the gaps Honest and open communication Ongoing process

Interventions for siblings Tools 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

O BSTACLES TO C OMMUNICATION Society Instinct Medicine

K EY 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

C OMMON Q UESTIONS 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?

R EFERENCES 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 ). 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 ). 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.