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
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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
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Many have poor palliative care coverage
Lack of care coordination
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Lots of specialists
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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
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“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
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It is Never True that
“Nothing More Can be Done”

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
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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

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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
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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

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2004
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Issues:
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Few referrals
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Nurse resistance
Feeling our way: a special room or a philosophy
Attendance at in-service education
Physician turnover
Nurse coordinator turnover
Nurse coordinator time

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2005
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Needs Assessment and Mission Clarification
Team Streamlined
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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

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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.

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DNR-CC discussion
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When do you know when to stop?
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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

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Experienced parents in unfamiliar territory
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Importance of presence
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Importance of a knowledgeable ally
Recognized importance of family’s faith life
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Baptism with the family priest
Prayer offered at Mark’s bedside
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Naming the baby
Goal: to take Mark home
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Referral to hospice
Grief goes on
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Bereavement packet/sympathy card

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The power of prayer
Reaching out to others
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CD offered to Sr. Maxine
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Support of other parents

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