Pediatric Palliative Care
Exploring Loss and Hope
Lisa Wing RN BN ELNEC PPC Trainer, IWK
With Heartfelt Thanks
With Heartfelt Thanks
To the families of:
Caleb MacArthur &
Ed Snaire
Whose stories & memories have
been so generously shared.
Self Reflection &
Understanding
Our earlier experiences with loss and death leave
us with messages, feelings, fears and attitudes
we will carry throughout our lives. Our personal
history with grieving shapes the meaning death
has for us.
Self Reflection &Understanding
• We are all vulnerable in the face of illness, dying
and death
• Vulnerability may bring to the surface, issues &
experiences related to previous wounds, losses,
death, mourning, beliefs & fears.
• Wisdom and growth can come from recognizing
and accepting our vulnerability
Pediatric Palliative Care
Who is the team?
• Child and family
– Parents, siblings, grandparents, relatives, friends
• Hospital
– Multidisciplinary team, various services/specialties
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Community
School
Hospice
Family practice
Social services
Historical Perspective
• Modern Medicine
• Geography
• Hospitals & Nursing Homes
• Topic of discussion
• Death free generation?
“The Kingdom Where Nobody Dies” Dr. Robert Kastenbaum- Saturday
Review
One Family’s Journey
Caleb...3 yo boy whose
Favorite superhero is
Spiderman
• April, 2014- Diagnosed
with Stage 4 Neuroblastoma
• Large extensive mass
• Chemo, surgery and stem cell transplant.
One Family’s Journey
• Family- parents, 8 yo sister, 5 yo sister, and twin
brother and sister- 1yo at time of diagnosis
Loss
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Health- healthy child, healthy sibling, own health
Normal Family Life
Control
Relationships
Finances/Work
Goals & dreams
Faith
Joy
Potentially child’s life
Bereavement, Grief and
Mourning
• Bereavement- to be torn apart
• Grief- represents the thoughts and feelings that
are experienced when something of value is no
longer present. Grief is the internal meaning
given to the experience of bereavement.
• Mourning- means taking the internal experience
of grief and expressing it outside oneself.
Grief & Bereavement
Grief affects the whole person:
• Physical
• Mental
• Emotional
• Social
• Spiritual
A Mother’s Words
Dec, 2014
“Less than a week before Christmas, our world
came crashing down, and, without
warning, we were quickly being beaten down
and swallowed by the most horrendous and
terrifying news imaginable. During his routine
evaluations (scans, tests), to the shock and
dismay of the oncology team at the IWK, a
new "spot" was discovered on Caleb's right leg.
Meaning, despite all of the most intense,
invasive, and aggressive treatments that Caleb
had received over the course of 8 months, this
dreadful, horrid disease was continuing to
grow.”
No Hope?
“There
is nothing more
that we can do”
Pandora’s Box
Always Hope!
The process of transition involves a movement
from one set of hopes and expectations to
another.
Davies & colleagues, 1995
As HCPs, we should continuously assess
• what the child is hoping for
• what the parents are hoping for:
- personally
- for their ill child
- for their other children
Parents’ Most Valued Attributes of HCP
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•
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•
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Honesty
Ensuring the child’s comfort
Clinical accuracy
Compassion
Sensitive communication
Availability
Direct communication with the child (as
appropriate)
Contro, Larson Arch Pediatric Adolesc Med ‘02
Mack,Hilden ASCO ‘04
Communication Gems…
What you bring into the space
• Presence
• Attentiveness
• Time
• Tone
• Genuineness
• Empathy, Sensitivity & Warmth
Be present… Be curious…
• Be patient with yourself as you get use to being in
the presence of pain.
• Be present with raw pain without feeling
responsible for relieving it or finding a way out of it
• Suspend judgments; seek out cues
• Walk alongside and be curious.
The STOP “Sign”
Communication Gems...
• Provide families time to share.
• Provide time to sit with the team to discuss
questions and concerns.
• Offer choices and respect choices.
• Provide information more than once.
• Anticipatory Guidance is critical.
Communication Gems…
Empathic Support
• “Can you tell me what is weighing on your heart
and mind right now?.”
• “What is the hardest part for you right now?”
• “I am here to listen if you need to talk.”
•
•
Helpful communication tools:
“And” versus “but”; “will” versus “not”
I wonder…, I imagine…, I see, sense, hear…
Listen
 Active listening is key. Listen more than talk
 Families need to tell their story and have an
opportunity to share their thoughts and feelings.
 Pay attention to your non-verbal
responses/messages- 85% communication non
verbal
 Validate feelings.
 Be in the moment.
 Start with empathy
 Use silence – it can be sacred.
Understanding the Children
Loss - Grief and Mourning
“Grief does not focus
on one’s ability to
‘understand’,
But instead upon
one’s ability to
‘feel’.
Therefore, any child
mature enough to
love is mature
enough to grieve.”
-Wolfelt
Children’s Perception & Awareness
of Death
• Infant
- dependent on mother; becoming aware of his separateness
- unable to conceive death but acutely aware of separation
• Toddler
- Lack cognitive understanding of death & related concepts
- Death seen as reversible, as abandonment, not permanent
- Common statements “Did you know my sister died? When
will she be home?
• Pre- School
- Death still seen as reversible. Personification of death.
- Feeling of responsibility because of wishes and thoughts.
Concerns of guilt.
- Common statements. “It’s my fault. I was mad and wished
she’d die”
Children’s Perception & Awareness of
Death
• School Age
- Concrete thinking. Death seen as punishment
- Still wanting to see death as reversible but
beginning to see it as final
• Adolescent
- Integration of one’s personality
- Ability to abstract. Beginning to conceptualize
death.
- Work at making sense of teachings
Communication & Children
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•
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Play
Art
Music
Nature
Word
“Ed’s Story”
Communication
• Be sensitive to communicate when the child
is ready
• Watch for doors that open to understand
influences and needs
• Try not to put up barriers inhibiting
communication
• Listen to and accept their feelings
• Brief and simple explanations
• Concrete and familiar examples may help
(i.e. explaining death- absence of familiar life functions)
Communication
• Ensure you understand what the child is
asking (Q with a Q)- What do they want to know?
What has the child heard and what does the child think
happened?
• Check to ensure child has understood what
has been said.
• Avoid euphemisms (i.e. sleep, lost, rest, went away,)
• Avoid “Died because… “sick” without fuller
explanation
Hope
Hope is not the expectation
that things will turn out well,
it is the belief that
there is meaning no matter
how things turn out.
-Vaclav Havel
A Mother’s Words...
“Shock, disbelief, anger, and complete
devastation were all rolled into one "super
emotion", unlike none other, as we received this
"dagger to our hearts". After regaining our
composure, our first thought was "we need to
get Caleb home!". All we wanted was to be with
our other children in our own home -- Caleb's
favorite place on earth! Enjoying quality
family time together, doing regular everyday
things that we had been deprived of for almost
an entire year, was our mission!”
Hope
Explore Family Hopes:
“What is important to you?”
“What would you like to happen?”
“What experience(s) would be meaningful?”
“Where would your family like to be?”
“Do you have cultural/religious/personal
traditions/desires?
“How would you like to spend the holiday(s)?”
What/Who is your hope in?
A Mother’s Words...
“We turned to our faith in God for guidance, and chose
hope, rather than despair. We counted our blessings as
we returned back home, and were able to spend the
holiday season as a family under one roof -- OUR roof,
OUR home -- with all five of our beautiful angels.
The most powerful lessons that we have learned since
Caleb was diagnosed is to truly embrace and cherish
each and every day, to live one moment at a time, and
to NEVER take anything or anyone for granted. So
over the holiday season, we did just that -- we lived for
each moment, and we experienced countless moments of
pure love and joy -- the most precious and priceless gift
of all!!”
Two Common Hopes
• Hope for making of memories
• Hope for the spending of quality
time.
Creating memories
• Assess parent’s wishes around memory making.
• To facilitate in memory making
-The family’s own ideas
- Incorporate CLS skills and resources
- Other Health Care Professionals Ideas
Creating Memories
Ideas:
- Sand molds
- Ink hand/foot prints
- Painted hands- with family, friends
- Pillowcases
- Videos
- Voice Recording
- Hair Locket
- Photos
- Letters/poems...
Creating Memories
Support the Family in Spending Time
Ideas
• Talk
• Read- favorite book, Bible
• Tell stories, share memories
• Sing
• Wash, reposition
• Brush/comb hair
• Mouth care
• Play
• Massage
Walking Alongside...
A Family’s Story
0n March 24, 2015, precious Caleb died...
Hope
Hope is the thing
with feathers
That perches in the
soul,
And sings the tunewithout the words,
And never stops at
all…
- Emily Dickinson
Hope after DeathA Mother’s Words...
“Caleb's passing was a significant and tragic loss to our
whole community, and to people from all over the world!
His story was so inspirational that it traveled far and
wide. His inner spirit was so strong! He gave us all
renewed hope and strength, along with a sense of unity
and togetherness! I have heard many testimonials from
many people about how Caleb had changed people's
perspectives, their priorities, their outlooks, their
attitudes, their values, their relationships with their
families and friends, and particularly their
children!! Caleb's journey brought people together in
love, in gratitude, and in prayer all around the world!! “
“ In providing palliative
care, professionals
are called on to use
intensive measuresExtreme responsibility,
Extraordinary
sensitivity,
and heroic
compassion.”
Wanzer,et al.
(1989)
A Letter
Self Reflection &Understanding
What you are
accomplishing may
seem like a drop in
the ocean. But if
this drop were not
in
the ocean, it would
be missed.
Mother Theresa
References
• The Dougy Center. (2004). Helping Children Cope
With Death. Portland, OR: The Dougy Center.
• Wolfelt, Alan (2004). A Child’s View of Grief. Fort
Collins: Colorado
• Max & Beatrice Wolfe Centre for Children’s Grief &
Palliative Care. Living & Dying. Toronto: Ontario
• Wolfelt, Alan (2012). Companioning the Grieving
Child. Fort Collins: Colorado
• Dyregrov, Atle (2008). Grief in Young Children.
London: England
“Life is a series of hellos and goodbyes.”
Thank You!
Comments?
Questions?
How to Reach Me…
Lisa Wing RN BN ELNEC PPC Trainer
Grief & Bereavement Resource Nurse,
Pediatric Palliative Care
IWK Health Centre Halifax
Lisa.wing@iwk.nshealth.ca
Tel: 902 470-8942