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Creatively Supporting Communities Mike Harlos MD, CCFP Medical Director, WRHA Palliative Care Physician Consultant, Canadian Virtual Hospice without Pediatric.

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Presentation on theme: "Creatively Supporting Communities Mike Harlos MD, CCFP Medical Director, WRHA Palliative Care Physician Consultant, Canadian Virtual Hospice without Pediatric."— Presentation transcript:

1 Creatively Supporting Communities Mike Harlos MD, CCFP Medical Director, WRHA Palliative Care Physician Consultant, Canadian Virtual Hospice without Pediatric Palliative Care Expertise Simone Stenekes RN, MN, CHPCN (C) Clinical Nurse Specialist - WRHA Palliative Care & the Canadian Virtual Hospice Dr. Gerri Frager Medical Director Pediatric Palliative Care IWK Health Centre Halifax Nova Scotia Canada

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 families Who we have come to know and whose pictures, stories, and memories were so generously shared

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

6 Palliative Expertise Pediatric Expertise

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

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

9 Communicating with children helpful modifications

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

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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.”

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14 Diagnosis Death Physician - 206 days Parent - 106 days Timing of Understanding That Child Had No Realistic Chance for Cure 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)

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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 Acknowledgement of the challenges Demonstrate appreciation Identify what is needed Communication – intent - modes - manner Accessibility to “expertise” building capacity building confidence building relationship Identify available resources – human & material

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22 BABY R.S. A Child’s Care to ponder while sipping your coffee Newborn male with postnatal dx Trisomy 13; unanticipated by family and health care teamNewborn male with postnatal dx Trisomy 13; unanticipated by family and health care team Nasogastric feeding initiated in hosp.Nasogastric feeding initiated in hosp. No symptom issues identifiedNo symptom issues identified Parents wanted their son to be able to die at home, in the nursery that they had prepared for himParents wanted their son to be able to die at home, in the nursery that they had prepared for him Uncertain prognosis for survivalUncertain prognosis for survival 13 days old when palliative care consulted for help in discharge plans & community follow-up/support13 days old when palliative care consulted for help in discharge plans & community follow-up/support Potential challenges – feeding, hydration, seizures, family coping, terminal phasePotential challenges – feeding, hydration, seizures, family coping, terminal phase

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-Dependant vs. People-Dependant

25 Critical Components of Care Plan  Communication Expectations of careExpectations of care Anticipated courseAnticipated course Potential challengesPotential challenges Clear delineation of health care provider roles and responsibilitiesClear delineation of health care provider roles and responsibilities  Availability Contact list with clear instructionsContact list with clear instructions Committed, responsive physician supportCommitted, responsive physician support  Medications On Site Route of administrationRoute of administration May need to manage pain, dyspnea, restlessness, congestionMay need to manage pain, dyspnea, restlessness, congestion  When Death Occurs Be aware of provincial requirements regarding involvement of Medical Examiner, need to pronounceBe aware of provincial requirements regarding involvement of Medical Examiner, need to pronounce Plans for Funeral HomePlans for Funeral Home

26 Pediatric Palliative Care Services in the WRHA Prior to Current Initiative No specialized pediatric palliative care trainingNo specialized pediatric palliative care training Pediatric specialty areas provide care to most terminally ill childrenPediatric specialty areas provide care to most terminally ill children Low referral and consultation rate for palliative careLow referral and consultation rate for palliative care WRHA Palliative Care Program adult-orientedWRHA Palliative Care Program adult-oriented Recognized as a priority for Pediatric Program and Palliative Care ProgramRecognized as a priority for Pediatric Program and Palliative Care Program

27 Pediatric Palliative Care Working Group – Identified Needs CommunicationCommunication Parental involvementParental involvement Low referral / consultation rateLow referral / consultation rate Clarify role of primary physicianClarify role of primary physician Evaluate current bereavement servicesEvaluate current bereavement services Specialized training for health care staffSpecialized training for health care staff Evaluate home care services guidelinesEvaluate home care services guidelines Criteria for registration with palliative care programCriteria for registration with palliative care program Dedicated resources and program for pediatric palliative care patientsDedicated resources and program for pediatric palliative care patients

28 Developing a Seamless Continuum of Care Achievements to Date Collaborative care planningCollaborative care planning Identification of issues surrounding pediatric palliative careIdentification of issues surrounding pediatric palliative care Strengths and areas for improvementStrengths and areas for improvement Education day - October 2003Education day - October 2003 Flowchart for referral/consultation of patientsFlowchart for referral/consultation of patients Future Initiatives Transitional services (continuity of care)Transitional services (continuity of care) Bereavement/Follow up servicesBereavement/Follow up services Pediatric palliative care specialistsPediatric palliative care specialists Pediatric Palliative Care Working Group

29 WRHA Collaborative Model for Pediatric Palliative Care

30 Case Description ctd d/c home at 15 daysd/c home at 15 days 24/7 pediatrician and palliative care medical coverage identified24/7 pediatrician and palliative care medical coverage identified Home care nursing visits initiated at 18 daysHome 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 collaborationSeizures  Initiation of SQ Phenobarb injections (4 days before death); peds/pall collaboration died at home when 40 days olddied 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 Ensure the Emotional Impact on the Health Professional of Providing Care is Addressed On being a witness

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.


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