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Pediatric Palliative Care

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Title: Pediatric Palliative Care


1
Pediatric Palliative Care
  • Justin Baker, MD
  • Attending Physician Quality of Life Service
  • Division of Palliative and End-of-Life Care
  • Department of Pediatrics
  • St. Jude Childrens Research Hospital

2
Objectives
  • The issue
  • Suffering and death
  • The background
  • The nature of suffering and goals of medicine
  • The solution
  • Palliative care
  • Integration into mainstream of care

3
Mortality Rates
Age Group Number 03 Change79-03 1-4
yr. 4,858 -48 5-9 yr. 3,018 -45 10-14
yr. 4,138 -32 15-19 yr. 13,812
-28 1-19 yr. 25,820 -38
Annual Summary of vital statistics-1997 2003
Pediatrics 1998 1021333-1349, Pediatrics 2005
115619-634
4
What about
  • Pain?
  • Suffering?
  • Quality of life?

http//artfiles.com
5
Focus on the investigation, diagnosis and
treatment of disease often at the expense of
caring for pain and suffering
  • Fox E. Predominance of the curative model of
    medical care. A residual problem. JAMA 1997
    278761-783

6
A national crisis
  • Suffering among children with complex medical
    conditions and their families
  • Unrelieved pain/symptoms
  • Significant emotional and spiritual morbidity
  • Ineffective communication
  • Poor reimbursement
  • Difficult care coordination
  • Limited care continuity
  • Inconsistent hospice care
  • Deficient education

When Children Die Improving palliative and
end-of-life care. Institute of Medicine, 2001
7
Central Issue
  • The nature of suffering and the goals of medicine

8
Suffering
  • The hidden aspect of human illness
  • Results from a threat to our
  • Physical and psychological self
  • Relationship with others
  • Relationship with a transcendent source of
    meaning

9
Suffering
  • Part of human nature
  • Profoundly personal
  • Threat to the integrity of personhood
  • Endurable when meaningful
  • Philosophic stance influenced by ones
    educational, religious and cultural backgrounds

10
Cultural stance towards suffering
  • For the wise man of old, the cardinal problem
    of human life was how to conform the soul to
    objective reality, and the solution was wisdom,
    self-discipline, and virtue. For the modern
    mind, the cardinal problem is how to subdue
    reality to the wishes of man, and solution is a
    technique CS Lewis The Abolition of Man

11
Evolution in medical thinking
Disease
Disease
Disease Person
Person
Person
Integrated
Magical
Dichotomous
12
Goals of Medicine
TO CURE
TO HEAL
Disease Theory Investigation Diagnosis Treatment
Person-Centered Theory Wholeness Relationships Int
egrity
Attend Suffering and Improve Quality of Life
13
Skillful combination of roles
Dedicated to discovery
Committed to care

14
A solution
  • Pediatric Palliative Care

15
What is Palliative Care?
  • The art and science of patient and
    family-centered care aimed at attending to
    suffering, promoting healing and improving
    quality of life

16
What is palliative care?
  • Comfort

Kim Boulon
www.gallerystthomas.com
17
What is palliative care?
  • Interpersonal relationships

www.qfolio.com
18
What is palliative care?
  • Emotional support

www.images.google.com
www.images.google.com
19
What is palliative care?
  • Social support

www.brainblogger.com
www.co.suffolk.ny.us/images
20
What is palliative care?
  • http//www.cms.edu/graphics/The20Spiritual20Path
    .jpg
  • Spiritual support

www.dawnjones.us/angel_1.jpg
www.cms.edu/graphics
21
What is palliative care?
  • You have not known grief until you have stood at
    the grave of your child
  • A. Lincoln

Library of Congress, Prints
22
Totality of Personhood
Religion
Culture
Mind
Body
Spirit
Society
Education
23
Interdisciplinary
Science
Humanism
Attend to Suffering Improve Quality of Life
24
Goal directed
Diagnosis - Science
Death - Experience
Life-prolongation
Cure
Bereavement
Comfort
Physical
Psychosocial
Spiritual
doing
being
25
Discovery
Bridging the gap through palliative care
Care
26
Professional sense of meaning
  • We discover meaning in medicine by
  • the advancement of science and technology
  • caring for the human being as a whole person
  • addressing the mysteries of suffering and death

27
General barriers
  • Lack of consistent definition of palliative care
    relevant to all cultures
  • Emotional
  • Defiance of the natural order when a child dies
  • Provider sense of failure when a child dies
  • Immeasurable parental distress at loss of a child
  • Prognostic uncertainty

Equating palliative care with end-of-life care
Avoidance of suffering children and their
families
Delayed focus on palliative care
28
General barriers
  • Diversity of illness, rarity of childhood death,
    little formal education of caregivers
  • Absence of developmentally appropriate assessment
    tools
  • No pharmacokinetic data for children taking
    symptom-relieving medications

Inexperienced providers ? poor quality
Poor assessment of symptoms and suffering
Poor palliation of symptoms
29
General barriers
Underprovision of services
  • Poor reimbursement for time
  • Lack of universal health care coverage for
    children
  • Fear of research in this population
  • No palliative care network

Lack of access to services
Retrospective historical studies Lose benefit of
research
Lack of outcomes research
30
Community barriers
  • Geographic diversity
  • Lack of reimbursement for critical services in
    the home i.e., psychosocial services
  • Hospice limitations
  • lt 6 month life expectancy
  • Lack of experienced pediatric clinicians
  • Low daily reimbursement
  • Not offered if other nursing services already
    involved with child

Under serviced populations
Lack of access to needed services
Delayed hospice Inexperienced providers Poor
quality
31
Hospital barriers
  • May require ED visit
  • Stay might be extended and care can be intensive
    even if patient has declined intensive care
  • Caregiver team
  • New, less familiar
  • Varying levels of experience
  • Frequent changes
  • Differing values

Disruption in continuity of care
Added cost
Poor assessment and palliation of symptoms
Inexperienced providers Conflict
32
Davids Journey
33
WHEN CHILDREN DIEImproving Palliative and
End-of-Life Care for Children and Families (2002)
Quality in the Care Of Seriously Ill Children
34
Patient Care
  • National Consensus for Quality Palliative Care,
    Clinical Practice Guidelines for Quality
    Palliative Care
  • National Quality Forum, Framework and preferred
    practices for palliative and hospice care quality
    (2007)

35
Education
  • IOM Health Professions Education A Bridge to
    Quality (2003)
  • Deliver patient-centered care as members of an
    interdisciplinary care team, emphasizing
    evidence-based practice, quality improvement
    approaches, and informatics

36
Research
  • IOM Crossing the Quality Chasm A New Health
    System for the 21st Century (2001)
  • Quality problems result from system failures

37
National priorities
  • IOM Priority Areas for National Action
    Transforming Health Care Quality (2003)
  • Pain and symptom control
  • Care coordination
  • End-of-Life care

38
Quality palliative care
  • Timely
  • Right patient/time
  • Patient-centered
  • Based on goals and preferences
  • Beneficial
  • Safe, positive influence on process and outcomes
  • Accessible and equitable
  • accessible to all in need
  • Effective
  • Evidence based
  • Efficient
  • meet the needs of the patient

39
Integration of Quality Palliative Care Principles
and Practices into the Continuum of Care
  • The Individualized Care Planning and Coordination
    Model (ICPC)

40
We must become the change we want to
see Mahatma Gandhi
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