Creatively Supporting Communities

1. 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

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

3. What we’ll cover • - • - • - • - - -

4. 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

5. TOTAL POPULATION of 30 Million Deaths/yr 200,000 adult 5,000 pediatric 5.6% referred

6. PalliativeExpertise PediatricExpertise Care Plan

7. often uncertain prognosis • assessing the child’s quality-of-life • orientation to cure

8. Developmental considerations - Disparities in illnesses Assessing pain & other symptoms & relief

9. Communicating with children helpful modifications

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

12. 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.”

14. Timing of Understanding That Child Had No Realistic Chance for Cure Diagnosis Death Physician - 206 days Parent - 106 days Wolfe, et al 2000

15. 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)

19. “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

20. 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

22. 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

23. 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

24. System-Dependantvs.People-Dependant

25. Critical Components of Care Plan

26. 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

27. 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

28. 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

29. WRHA Collaborative Model for Pediatric Palliative Care

30. 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

31. collective wisdom-collective compassion-collective skills

32. 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

33. On being a witness Ensure the Emotional Impact on the Health Professional of Providing Care is Addressed

34. PEACE 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.