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 SnaireWhose 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 CareWho is the team?

• Child and family– Parents, siblings, grandparents, relatives, friends

• Hospital– Multidisciplinary team, various services/specialties

• 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

• 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

• 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 empathyUse 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

• 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 feathersThat perches in the soul,And sings the tune-without the words,And never stops at all…- Emily Dickinson

Hope after Death-A 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 measures-

Extreme responsibility,

Extraordinary

sensitivity,

and heroic

compassion.”

Wanzer,et al. (1989)

A Letter

Self Reflection &Understanding

What you are accomplishing mayseem like a drop inthe ocean. But ifthis drop were not inthe ocean, it wouldbe 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…How to Reach Me…

Lisa Wing RN BN ELNEC PPC Trainer Grief & Bereavement Resource Nurse, Pediatric Palliative CareIWK Health Centre Halifax

Lisa.wing@iwk.nshealth.ca Tel: 902 470-8942