Pediatric Palliative Care:
Sharing Expertise:
Lynn Grandmaison Dumond, RN(EC), MScN, APN
Marion Rattray, RN, BN, Manager
Objectives
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Review the principles of pediatric palliative
care
Highlight the services offered by the
CHEO Palliative Care Outreach Team
Elaborate on approaches to teaching end-of
life issues
Present and discuss current information of
Pediatric Palliative Care
Guiding Principles of Pediatric
Palliative Care
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Care centered on the child and his/her
family
Great importance placed on
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the therapeutic relationship
continuity of care
Communication
Accessibility
Ethical considerations
What is Pediatric Palliative Care?
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Is an active, total approach, embracing physical,
emotional, social and spiritual elements
Focuses on the quality of life for the child/youth and
support for the family
Includes the management of distressing symptoms, the
provision of respite and follow through of illness, death
and bereavement.
Provided when curative treatment is not, or is no longer
feasible - may run parallel to active treatment
Palliative treatment may extend over many years
Why Different from Adults?
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Children are not little adults; there is a
developmental component to the care
Children are often born with life
threatening conditions; may be on
palliative care for their entire lives
In contrast to adult palliative care, most
children receiving palliative care do not
have cancer
The approach must be tailored to children,
family and their special needs
CHEO’s Outreach Palliative Care
Program Goals
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Support of child, family and care team
Advocate and Empower
Collaborate, Communicate, Coordinate
Provide Consistency and continuity
Provide Expertise
Educate, Participate in Research and Develop
programming
CHEO’s Outreach Palliative Care
Program Services
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In house consultation and follow up
Outreach
Education, debriefing and support to
professionals
Pain and symptom management
Bereavement support
Assistance with ethical decision making
Clinical Settings…
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Hospital/Institutional care
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CHEO and other regional referral centers
Community care
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Roger’s House
In-home acute palliative care and surveillance
Roger’s House is…
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An 8 bed hospice for children
An integral part of CHEO’s Pediatric
Palliative Care Outreach Program
A place where children and youth with
progressive, life limiting illnesses are
welcomed with their family and friends
An environment where efforts are made to
enhances quality of life of the child and
support his/her family
Services offered at Roger’s House
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Temporary respite (planned and
emergency)
Acute pain and distressing symptom
management
Holistic “end of life” care
Temporary “transition to home” care
Grief and bereavement care
Barriers to Palliative Care
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The death of a child is inconceivable
Terminology causes anxiety
Topic is difficult to discuss
Lack of knowledge
late consultation
Dichotomy b/w healing and death: success
v/s total failure
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Uncertain prognosis
Family unwilling to accept the palliative
nature of illness
Language barriers and cultural differences
Time constraints, lack of human resources
Search for curative treatments
Lack of services in palliative care
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Lack of knowledge/discomfort with end of
life care and treatments
Conflicts regarding goals of treatment
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b/w family members
b/w family members and team members
b/w team members
Important Principles
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Palliative Care does not hasten death and is
not euthanasia
Principles of palliative care can and should
be integrated to acute and intensive care
Care of the caregiver is extremely
important (family and professionals)
Complementary approach and services
And…
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Most effective when offered by an
interdisciplinary team
Offered in the environment chosen by child
and family
One Case at a Time
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Consists of:
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Early consultation if possible
Complete case review
Therapeutic relationship set up
Interdisciplinary intervention
Implementation and frequent review of
palliative plan of care
One Family & Child at a Time
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Consists of:
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Flexible approach
Open, honest, active approach
Compassion and comprehension
Respect of values, culture, spirituality
Set up a community network
Support in times of decision making
Services offered conjointly
One Professional at a Time
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Consists of:
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Collaborative approach
Sensitize/mentor
Support and care of the professional caregiver
Elaborate the specialty
Integration of services
Respect of professionals beliefs, values…
Outcomes!
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Collaboration
Sensitization, ease of discussion, planning
Respect, support and validation
Positive memories and feelings
Improved family coping
Subject less “taboo”
Resources for Pediatric Palliative Care
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CHEO Palliative Care Team
Canadian Hospice Palliative Care Association
(CHPCA)
Hospice Association of Ontario (HAO)
CPHPC Canadian Pediatric
Initiative for Pediatric Palliative Care (IPPC)
PedPallNet
End of Life Network Education Consortium
(ELNEC)
Canadian Network of Palliative Care for Children