Download Death and Dying_Dombrowski_Gross 11-5-15

Navigating Communication about
Death and Dying in the Pediatric
Setting
“How did they fit my sister in that box?”
Dana Dombrowski, MSW, LSW
Kelly Gross, CLS, CTRS
Objectives
• Discuss role of the palliative care team
• Summarize why discussion about death in the
pediatric setting is difficult
• Identify ways to talk to children and their
caregivers about death and dying
• Identify interventions and resources
• Identify ways that a home visit can be a
supportive intervention
Pediatric Advanced Care Team
PACT at CHOP
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Consultative service
Multidisciplinary team
Interdisciplinary approach
Hospital and home settings
24/7 Access for parents, clinicians
Clinical, Education, Research
Partners Program- Community Outreach
Team Communication:
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Patient/Family
Primary Physician
Primary Medical Team (inpatient)
Sub-specialists
Consult services
Home Care
Nutrition
Pharmacy
Therapists (PT/OT/ST)
Psychosocial (Social Work/Art/Child Life/Music, etc)
Case Managers/Care Coordinators
Community resources( School, Town, County, State, Federal)
• *When to have team communication
An Interdisciplinary Approach
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Decreases stress amongst health care providers
Improves communication
Decreases conflict while improving collaboration
Increases competence and confidence
Increase quality of care
Improves ability to manage bereavement needs
Helps to improve caregivers knowledge and skills
Provides an environment where peers learn from each other in all areas:
clinical, psychosocial spiritual, and emotional (Rushton,CH, Reder,E, Hall,B, Comelllo,K,
Sellers,D, Hutton,N. Interventions to Improve Pediatric Palliative Care and Reduce Health Care Professional
Sufferin. 2006)
• Helps optimize continuity of care
Grief Assessment Includes
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Type of grief
Reactions
Processes and tasks
Influencing factors
All family members (parents,
siblings, extended)
Glass et al., 2006
Attentive Listening
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Encourage talking
Be silent
Acknowledge their feelings
Don’t change the subject
Take your time in giving advice
Encourage reminiscing
Myths and Truths Regarding
End-of-Life Care
Myths
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Children will be overwhelmed by
their diagnosis
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Children do not really understand
that they are dying
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Talking about illness and death will
take away hope
Truths
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Prognostication difficult
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Developmental issues can affect
communication and dying
experience
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Schools, communities are generally
not prepared to deal with death of
a child
Communication Strategies with
Caregivers and Staff
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Acknowledge difficulty
Importance of relationships
Type/Setting of discussion
Importance of listening and being available
Remember that children are observant
Checking back in is critical
Reassurance
Guilt
Grollman, 1968
What Might Not Work
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Having a “set agenda”.
Doing all the talking.
Not allowing silence.
Focusing on your own emotion/agenda.
Giving too many medical details.
McDonagh, 2004
Communication Strategies
• Ask clarifying questions to their tough questions
• “I’m wondering why you are wondering about this
today?
• Be honest; the unknown is usually more anxiety
provoking than the reality and children know something
is wrong even if they are not told
• Recognize that children will ask for information as they
need it; need a balance of communication and play
• Provide reassurance to the child
Communication Strategies
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Use correct words to explain death; use literal terms versus
concepts
• Finding out what words the family utilizes – consistent
language
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Identify fears and misconceptions, offer reassurance and
provide opportunities to play, create legacy items, have
ongoing talks
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Remember, you don’t have to have the answers; reflective
listening skills
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Seek out support in the community- you do not need to do
this alone
Reminders for Caregivers
• Professionals can be a support to help guide caregivers through
difficult conversations
• Every child will grieve in their own way, in their own time (ie:
grief bursts)
• Give children any “choices” available
• Remind parents to not force the visit, or request to have the
sibling kiss/touch the patient but offer as a suggestion (Ie: “if
you want to hold your sister’s hand, you still can”)
• Children need breaks
– Play as a coping mechanism
• Keepsakes
Learning from our families:
Parents/Guardians
• Children have real and difficult questions
• Fear of saying the “wrong” thing
• Losing a child seems so unnatural
• Boundaries/Attachment
• Lifetime of grieving
Tasks and Activities…
also – games and music can be/become a source of support
Developmental Concepts of Death
• A child’s reaction to death corresponds to their
developmental/cognitive age.
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Birth to 2 years: No cognitive understanding of
death
Preschool: Does not see death as permanent
School age (6-9 years) : Emerging understanding of
death
School age (9-12 years): Death is final and
irreversible
Adolescent: Understands the implications of death
CHILD LIFE SPECIALISTS
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Child Life Specialists are trained professionals who have a background in child
development and aide in helping patients, siblings and other family members
navigate various medical experiences.
As a Child Life Specialist on the Pediatric Advanced Care Team (PACT), my goals of
working with patients and siblings are:
• Provide Age appropriate play and activities to encourage expression of feelings both in the
hospital and home setting
• Foster a therapeutic relationship with patients, siblings and family which can minimize stress
and anxiety
• Increase familiarity/prepare patients and sibs for impending loss
• Promote development of adaptive coping strategies for managing changes resulting from life
threatening illness
• Support siblings through bereavement process with scheduled home visits and follow up after
patient death
Communication Strategies with
Children
• Death is a taboo topic and often adults will avoid talking
about death around children as a way of protecting them.
One of the most important strategies in discussing death with
children is the way we communicate with them.
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Create a safe place for children to talk and or ask questions
As the child clarifying questions to get to the root of what they are
asking
Avoid euphemisms
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Common euphemisms: sleeping, gone away, went to be with God
Being honest on a level of their developmental understanding
Sibling Sentence Starters…
• Encourage parents/caregivers to tell their children about the death of their
brother or sister.
• “Do you know why you came here today?”
• “_____ has been very sick. The doctors and the nurses have tried very hard
to help your brother or sister. They tried a lot of different medicines (use
your judgment here – do you need to reference the ventilator etc) but the
medicines (and/or the machines) could not help your brother or sisters body
anymore.”
• “______ is very hurt. The doctors and nurses tried to help his / her body but
he / she was too hurt. Your brother / sister was so hurt that his / her lungs
could not breathe anymore. He / She is not breathing anymore. Do you know
what that means?”
– Either of those scenarios can lead to  “Your brother / sister died here at the hospital
today.
– Do you know what it means when someone dies?
Funeral and Burial Preparation
“How did they fit my sister into that box?”
• Who will be attending the services?
• What will the body look like?
• Where will the services be held?
• When will the services take place?
• Why do we have services?
Tools and Interventions
• Child Life Specialists provide therapeutic tools
and interventions as outlets for children to
grieve, express emotion or to help identify
appropriate coping strategies
Legacy
Books and workbooks
Community Resources
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Peter’s Place – Wayne, PA
Center for Grieving Children – Philadelphia
Gilda’s Club – Warminster, PA
The Compassionate Friends – multiple locations
Camp Erin – multiple locations
Supporting Kidds – Hockessin, DE
Comfort Zone Camp – multiple locations
Safe Harbor/Abington Health – Abington, PA
The Center for Loss and Bereavement – Skippack, PA
The Center for Grief Support at Samaritan Hospice,
Marlton, NJ
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Web based resources
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CHOP.edu/healthinfo/grief-and-bereavement.html
CHOP.edu/healthinfo/discussing-death-with-children.html
AChildInGrief.com
Compassionatefriends.org
NHPCO.org
CHIonline.org
Nichd.nih.gov
Childrengrieve.org
Compassionbooks.com
Hellogrief.org
Centering.org
Griefwatch.com
Other Resources
• 5 Wishes, Voicing My Choices, My Wishes
• NY Grief Booklet
5 Wishes
• First living will to address personal, emotional
and spiritual needs, along with medical wishes
• How we use these in the pediatric setting
• Can be changed at any time
Home Visits as an Intervention
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Glimpse into the family’s daily life
Control
Home as a comfortable setting
Can be utilized both before and after a patient
dies
Case Study
• Teenage boy with terminal cancer
– Treated for several years
– Use of clinical trials
• Family
– Key decision makers
– Importance of faith
• How we Helped
– Hospital sessions and home visits
– Ongoing discussion – letting the family lead the way
Thank You
• Questions
• Comments
• Contact information:
– Dana: [email protected]
– Kelly: [email protected]