Transcript Next Steps: Sharing The Long Walk On The Pediatric

Next Steps: Sharing The Long Walk
On The Pediatric Palliative Care
Journey
Sr. Maxine Young, SND
Chaplain
Beth McBurney-White, RN, MSN
Pediatric Clinical Nurse Specialist
Mercy Children’s Hospital, Toledo, Ohio
© Copyright by
Sr. Maxine M. Young, SND and
Beth McBurney-White, RN, MSN
ALL RIGHTS RESERVED
2006
Objectives
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1. Describe maternal-child/pediatric
palliative care as it relates to quality of
life and spirituality.
2. Discuss the development of a
maternal-child/pediatric palliative care
program within a tertiary referral
hospital setting.
How did Pediatric Palliative Care
Become So Important?
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Significant social changes
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Family centered pediatrics
Respect for life from conception to death
Expectation of medical success
The Value of Children:
A Social Shift
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Smaller families
Children are cherished
Parenting as an art
The Value of Life:
Appreciation of the Journey
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Improved knowledge of:
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Ability of children to understand
Allowing natural death vs. enslavement to
technology
Importance of bereavement
Changes in Health Care of
Children over the past 50 years
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Improved technology
Immunizations
Antibiotics/Antivirals
DNA/Genes
Prenatal diagnosis
Implications
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Children survive today who would have
died even a generation ago
Total cure vs. survival with chronic
health problems
Therapeutic optimism is more the norm
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Expectation that every baby can be saved
and that all trauma can be fixed
Even with Advancements, Some
Things Just Can’t be Fixed
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53,000 children age 0 to 19 years die
each year in U.S.
50 percent are infants < 1 year old
Over 75% die in the hospital, many in
an ICU
Approximately 1 million birth tragedies
each year (90% miscarriages)
Both Well and Sick
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10 % of all children in the U.S. live with
a serious, chronic medical condition
Characterized by times of relative
wellness and periodic episodes of acute
exacerbations
God is still in control
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With God’s help we have accomplished
much to improve health and quality of
life
Hard to know when to say no more and
when to treat again
Concept of Suffering
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State of severe distress that threatens the
intactness of a person
Wolfe et.al. (2000) found 89% of all dying
children suffered “a great deal” in last months
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Pain
Fatigue
Dyspnea
Fear of abandonment from medical personnel
when curative efforts slow down or stop
Sources of Suffering for Parents
and Children
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Traveling for care
Lack of insurance or failure to reimburse
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15 percent are uninsured
Many have poor palliative care coverage
Lack of care coordination
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Lots of specialists
Confusing information
Unreliable follow through
More Sources of Suffering
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Fighting for information
Child care
Uneducated doctors, nurses, therapists,
chaplains
Unhelpful Euphemisms
 “Closure”, “Doing everything” “Giving
up” “God’s Will” “He’ll be God’s angel”
“Getting over it”
It’s Enough to Make You Sick
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Caregiver burden
Healthy child guilt
Depression, somatic symptoms common
Grief Reactions
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Frightening, wearing
*Anger – from chronic irritation to rage
*Narcissistic heart
Chronic sorrow
Reconciliation
Can’t avoid it
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Anticipatory is best
The Palliative Care Bridge
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Children who live daily with life
threatening illnesses and their families
An in-between world
Palliative Care Can Share
the Burden
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Understand that grief is not done right
or wrong
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Just because a parent does not cry or
withdraw does not mean denial
A companion who knows the system
Relational communication is key
Palliative Care
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A necessary part of comprehensive
health care offered to children who
have any life limiting illness
Is not hospice: child may not be
terminally ill
Palliative Care: In a nutshell
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Aggressive, non-curative treatment
Symptom management
May co-exist with curative care
Pediatric Palliative Care:
General Principles
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Developmental Care is the framework
Extends across illnesses and settings
Parents experience profound grief when
children are chronically ill
Children grieve for loss of control
Palliative Care Philosophy
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Maximize Quality of Life
Prevent or Relieve Suffering
It is Never True that
“Nothing More Can be Done”
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Advantages of Palliative Care
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Children who were chronically ill or
dying benefit from palliative care by:
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Fewer days in ICU
Fewer blood draws, central lines, feeding
tubes and drugs
More frequent referrals to social work and
pastoral care
Children who can Benefit
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Palliative care services greatly help children
and their families with:
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HIV/AIDS
Cancer
Lethal chromosome disorders (5,13,16,18)
Hematologic problems
Metabolic diseases
Birth defects (Myelomeningocele)
Severe trauma
Extreme prematurity
Maternal-Child/Pediatric Palliative
Care:
Supporting Quality of Life
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Patient and Family is the unit of care
Attention is toward Physical,
Psychological, Social and Spiritual
Needs
Interdisciplinary approach
Spirituality
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Seeking meaning
Holding on to hope
Importance of ritual
God connection
Barriers to Effective
Palliative Care
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Therapeutic Optimism: We will never
give up
Hospices that will not accept patients
concurrent curative treatment
Lack of adequate training of
professionals
Looking at the family’s world as though
it is a world we don’t inhabit
Optimal Helping Approach
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Interdisciplinary (IDT)
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Sometimes called “Multidisciplinary Team”
Next Steps:
Developing an IDT
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Maternal-Child/Pediatric Palliative Care
Committee (MaCPaC)
MaCPaC Goal
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Coordination of care of the child with a
life threatening or life limiting illness in
collaboration with the family
Attracting members to MaCPaC
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Meets moral imperative of health
professions
Positive feedback from lay and
professional community
Capitalizes on wisdom of experienced
professionals
IDT Members
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Permanent members
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Physician
Nurse
Social worker
Chaplain
Consultative members
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Pharmacist
Dietician
A Brief History of MaCPaC
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Began July, 2002
Perinatologist initiated the
multidisciplinary and community task
force answering a call from parents who
felt underserved when their newborns
died
Spring 2004, nurse coordinator named
funded by Mission Services
MaCPaC History
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2004
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Issues:
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Few referrals
Nurse resistance
Feeling our way: a special room or a philosophy
Attendance at in-service education
Physician turnover
Nurse coordinator turnover
Nurse coordinator time
MaCPaC History
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2005
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Needs Assessment and Mission Clarification
Team Streamlined
Nurse coordinator – full-time presence
MaCPaC Name
Hospice Joint Venture
Leadership sub-Team
Medical Director
CATCH grant
Leadership Team
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An IPPC Retreat allowed clarity of
thought
MaCPaC Mission Statement
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We are a multidisciplinary team
providing physical, emotional and
spiritual care to newborns, infants,
children, adolescents and parents who
are living with a life threatening
condition or perinatal loss, including
their families, caregivers and the
community.
MaCPaC Challenges
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A Rose By Any Other Name
Physician to Physician referrals
Money, Moola, Scratch
Gaps in community services
Time, Time, Time
MaCPaC in Practice
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Tia, 15 year old girl with brain tumor
diagnosed 4 years ago now in the
hospital with recurrence of tumor.
Treatment options include palliative
surgery or radiation only. Tia has been
in remission for 18 months. She has
regularly attended school & plays soccer
on her church’s CYO team. She is in
pain and misses her friends.
Palliative Care Interventions
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DNR-CC discussion
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When do you know when to stop?
I don’t want her to suffer: pain relief, more tx
Repeated conversations, repeated conversations
Home church: anger at God
Friends and school: normalcy
Food: what if she starves to death?
I wanna go home
Hospital staff: sharing the plan
MaCPaC in Practice
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Baby Mark born at term with Trisomy
18, a lethal genetic disorder.
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Diagnosis was a surprise
Parents had 2 older children who were
teenagers
Baby Mark’s birth was eagerly anticipated
Palliative Care Interventions
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Experienced parents in unfamiliar territory
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Recognized importance of family’s faith life
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Baptism with the family priest
Prayer offered at Mark’s bedside
Naming the baby
Goal: to take Mark home
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Importance of presence
Importance of a knowledgeable ally
Referral to hospice
Grief goes on
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Bereavement packet/sympathy card
Healing continues
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The power of prayer
Reaching out to others
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CD offered to Sr. Maxine
Support of other parents
Said Jesus:
Take care that you do not diminish the
importance of even one of these
children; for, I tell you, in heaven their
angels continually see the face of my
Father in heaven….So it is not the will
of your Father in heaven that one of
these little ones should be lost.
----Matthew 18: 10, 14