Creatively Supporting Communities

Mike Harlos MD, CCFPMike Harlos MD, CCFP Medical Director, WRHA Palliative Care Medical Director, WRHA Palliative Care Physician Consultant, Canadian Virtual HospicePhysician Consultant, Canadian Virtual Hospice

without Pediatric Palliative Care

Expertise

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

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

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

----

-

-

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

200,000 adult 5,000 pediatric

TOTAL POPULATION of 30 Million Deaths/yr

5.6% referred

PalliativeExpertise

PediatricExpertise

• often uncertain prognosis

• assessing the child’s quality-of-life

• orientation to cure

Assessing pain & other symptoms & relief

Developmental considerations - Disparities in illnesses

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.”

Diagnosi

s

Death

Physician - 206 days

Parent - 106 days

Timing of Understanding That Child Had

No Realistic Chance for Cure

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

• 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

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

• Newborn male with postnatal dx Trisomy 13; Newborn male with postnatal dx Trisomy 13; unanticipated by family and health care teamunanticipated 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 Parents wanted their son to be able to die at home, in the nursery that they had prepared home, in the nursery that they had prepared for himfor him

• Uncertain prognosis for survivalUncertain prognosis for survival

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

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

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

System-Dependant

vs.

People-Dependant

Critical Components of Care PlanCritical Components of Care Plan CommunicationCommunication • Expectations of careExpectations of care

• Anticipated courseAnticipated course

• Potential challengesPotential challenges

• Clear delineation of health care provider Clear delineation of health care provider roles and responsibilitiesroles and responsibilities

AvailabilityAvailability • Contact list with clear instructionsContact list with clear instructions

• Committed, responsive physician supportCommitted, responsive physician support

Medications On Medications On SiteSite

• Route of administrationRoute of administration

• May need to manage pain, dyspnea, May need to manage pain, dyspnea, restlessness, congestionrestlessness, congestion

When Death When Death OccursOccurs

• Be aware of provincial requirements Be aware of provincial requirements regarding involvement of Medical regarding involvement of Medical Examiner, need to pronounceExaminer, need to pronounce

• Plans for Funeral HomePlans for Funeral Home

Pediatric Palliative Care Services in the Pediatric Palliative Care Services in the WRHA Prior to Current InitiativeWRHA Prior to Current Initiative

• No specialized pediatric palliative care trainingNo specialized pediatric palliative care training

• Pediatric specialty areas provide care to most Pediatric specialty areas provide care to most terminally ill childrenterminally 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 Recognized as a priority for Pediatric Program and Palliative Care ProgramPalliative Care Program

Pediatric Palliative Care Working Group – Pediatric Palliative Care Working Group – Identified NeedsIdentified Needs

• Communication Communication

• 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 Dedicated resources and program for pediatric palliative care patientspatients

Developing a Seamless Continuum of Care

Achievements to DateAchievements 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 2003 Education day - October 2003

• Flowchart for referral/consultation of patientsFlowchart for referral/consultation of patients

Future InitiativesFuture 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

WRHA Collaborative Model for Pediatric Palliative Care

Case Description Case Description ctdctd• d/c home at 15 daysd/c home at 15 days

• 24/7 pediatrician and palliative care medical 24/7 pediatrician and palliative care medical coverage identifiedcoverage identified

• Home care nursing visits initiated at 18 daysHome care nursing visits initiated at 18 days 3 scheduled nursing visits (once/week)3 scheduled nursing visits (once/week) 1 phone call (evening) 1 phone call (evening) home visit made by nurse home visit made by nurse 2 unscheduled home visits made by nurse2 unscheduled home visits made by nurse

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

• died at home when 40 days olddied 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 centerwhere sky is, where wind, where silent knowing.

Put seeds and cover them.blades will sprout where you do your work.

- Rumi

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

On being a witness

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.