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Creatively Supporting Communities. Simone Stenekes RN, MN, CHPCN (C) Clinical Nurse Specialist - WRHA Palliative Care & the Canadian Virtual Hospice.

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Creatively Supporting Communities

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Creatively Supporting Communities

Simone Stenekes RN, MN, CHPCN (C) Clinical Nurse Specialist - WRHA Palliative Care & the Canadian Virtual Hospice

Mike Harlos MD, CCFPMedical Director, WRHA Palliative Care Physician Consultant, Canadian Virtual Hospice

Dr. Gerri Frager Medical Director Pediatric Palliative Care IWK Health Centre Halifax Nova Scotia Canada

without Pediatric Palliative Care Expertise

Can you name the concerns that you may have about caring for a child with a significant illness or who is dying?

What we’ll cover

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With heartfelt thanks to the families of:  Jenica Saulnier  Monica Smith and many other children and familiesWho we have come to know and whose pictures, stories, and memories were so generously shared

TOTAL POPULATION of 30 Million Deaths/yr

200,000 adult

5,000 pediatric

5.6% referred



Care Plan

  • often uncertain prognosis

  • assessing the child’s quality-of-life

  • orientation to cure

Developmental considerations - Disparities in illnesses

Assessing pain & other symptoms & relief

Communicating with children helpful modifications

Address the family’s concerns as well as the child’s

The “All or Nothing” Barrier

  • Can be at the level of program development & service delivery, or at an individual level

  • Different manifestations:

    • “I know palliative care, but not the care of children. I’d better not become involved at all”

    • “I know my children better than anyone, and nobody could possibly care for them as well as I can. I see no need to collaborate.”

Timing of Understanding That Child Had

No Realistic Chance for Cure



Physician - 206 days

Parent - 106 days

Wolfe, et al 2000

Meet Monica

  • 3 year old

  • Dx: medulloblastoma @ 18 mos

  • new onset seizures

  • MRI: new & widespread leptomeningeal seeding

  • Headache on admission, relieved by Acetaminophen

  • within 36 hours:

    • Hydromorphone infusion

    • Neuroleptic infusion (Methotrimeprazine)

“Treatment often lasts for several years, and the parents and children become completely dependent on the regional center for medical and emotional care, during which time the district pediatrician and family doctor become strangers to the child, the family, and the illness.”

- Stevens and Owens BMJ 1987

Strategies for Building the Team

  • Identify what is needed

  • Identify available resources – human & material

  • Acknowledgement of the challenges

  • Demonstrate appreciation

  • Communication – intent - modes - manner

  • Accessibility to “expertise”

    • building capacity

    • building confidence

    • building relationship

  • Newborn male with postnatal dx Trisomy 13; unanticipated by family and health care team

  • Nasogastric feeding initiated in hosp.

  • No symptom issues identified

  • Parents wanted their son to be able to die at home, in the nursery that they had prepared for him

  • Uncertain prognosis for survival

  • 13 days old when palliative care consulted for help in discharge plans & community follow-up/support

  • Potential challenges – feeding, hydration, seizures, family coping, terminal phase

BABY R.S. A Child’s Care to ponder while sipping your coffee

Part 2:Development of a Collaborative Approach to Pediatric Palliative Care in Winnipeg

Mike Harlos MD, CCFP

Medical Director, WRHA Palliative Care

Physician Consultant, Canadian Virtual Hospice

Simone Stenekes RN, MN, CHPCN (C)

Clinical Nurse Specialist -

WRHA Palliative Care

and the Canadian Virtual Hospice


Critical Components of Care Plan

Pediatric Palliative Care Services in the WRHA Prior to Current Initiative

  • No specialized pediatric palliative care training

  • Pediatric specialty areas provide care to most terminally ill children

  • Low referral and consultation rate for palliative care

  • WRHA Palliative Care Program adult-oriented

  • Recognized as a priority for Pediatric Program and Palliative Care Program

Pediatric Palliative Care Working Group – Identified Needs

  • Communication

  • Parental involvement

  • Low referral / consultation rate

  • Clarify role of primary physician

  • Evaluate current bereavement services

  • Specialized training for health care staff

  • Evaluate home care services guidelines

  • Criteria for registration with palliative care program

  • Dedicated resources and program for pediatric palliative care patients

Developing a Seamless Continuum of Care

Pediatric Palliative Care Working Group

Achievements to Date

  • Collaborative care planning

  • Identification of issues surrounding pediatric palliative care

  • Strengths and areas for improvement

  • Education day - October 2003

  • Flowchart for referral/consultation of patients

    Future Initiatives

  • Transitional services (continuity of care)

  • Bereavement/Follow up services

  • Pediatric palliative care specialists

WRHA Collaborative Model for Pediatric Palliative Care

Case Description ctd

  • d/c home at 15 days

  • 24/7 pediatrician and palliative care medical coverage identified

  • Home care nursing visits initiated at 18 days

    • 3 scheduled nursing visits (once/week)

    • 1 phone call (evening)  home visit made by nurse

    • 2 unscheduled home visits made by nurse

  • Seizures  Initiation of SQ Phenobarb injections (4 days before death); peds/pall collaboration

  • died at home when 40 days old

collective wisdom-collective compassion-collective skills

You’re a song,

a wished-for song.

Go through the ear to the center

where sky is, where wind,

where silent knowing.

Put seeds and cover them.

blades will sprout

where you do your work.

- Rumi

On being a witness

Ensure the Emotional Impact on the Health Professional of Providing Care is Addressed


It does not mean to be in a place where there is no noise, trouble, or hard work

It means to be in the midst of all those things and still be calm in your heart.

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