Next Steps: Sharing The Long Walk On The Pediatric Palliative Care Journey

Sr. Maxine Young, SNDChaplain

Beth McBurney-White, RN, MSNPediatric 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

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?

Significant social changes Family centered pediatrics Respect for life from conception to

death Expectation of medical success

The Value of Children: A Social Shift

Smaller families Children are cherished Parenting as an art

The Value of Life: Appreciation of the Journey

Improved knowledge of: 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

Improved technology Immunizations Antibiotics/Antivirals DNA/Genes Prenatal diagnosis

Implications

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 Expectation that every baby can be

saved and that all trauma can be fixed

Even with Advancements, Some Things Just Can’t be Fixed

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

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

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 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 Pain Fatigue Dyspnea Fear of abandonment from medical personnel

when curative efforts slow down or stop

Sources of Suffering for Parents and Children Traveling for care Lack of insurance or failure to reimburse

15 percent are uninsured Many have poor palliative care coverage

Lack of care coordination Lots of specialists Confusing information Unreliable follow through

More Sources of Suffering 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

Caregiver burden Healthy child guilt Depression, somatic symptoms

common

Grief Reactions Frightening, wearing *Anger – from chronic irritation to

rage *Narcissistic heart Chronic sorrow Reconciliation Can’t avoid it

Anticipatory is best

The Palliative Care Bridge

Children who live daily with life threatening illnesses and their families

An in-between world

Palliative Care Can Share the Burden

Understand that grief is not done right or wrong 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

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

Aggressive, non-curative treatment

Symptom management May co-exist with curative care

Pediatric Palliative Care: General Principles 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

Maximize Quality of Life Prevent or Relieve Suffering

It is Never True that “Nothing More Can be Done”

Advantages of Palliative Care

Children who were chronically ill or dying benefit from palliative care by: 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 Palliative care services greatly help

children and their families with: 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

Patient and Family is the unit of care

Attention is toward Physical, Psychological, Social and Spiritual Needs

Interdisciplinary approach

Spirituality Seeking meaning Holding on to hope Importance of ritual God connection

Barriers to Effective Palliative Care 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

Interdisciplinary (IDT) Sometimes called “Multidisciplinary

Team”

Next Steps: Developing an IDT

Maternal-Child/Pediatric Palliative Care Committee (MaCPaC)

MaCPaC Goal

Coordination of care of the child with a life threatening or life limiting illness in collaboration with the family

Attracting members to MaCPaC

Meets moral imperative of health professions

Positive feedback from lay and professional community

Capitalizes on wisdom of experienced professionals

IDT Members Permanent members

Physician Nurse Social worker Chaplain

Consultative members Pharmacist Dietician

A Brief History of MaCPaC 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 2004

Issues: 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 2005

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

An IPPC Retreat allowed clarity of thought

MaCPaC Mission Statement 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

A Rose By Any Other Name Physician to Physician referrals Money, Moola, Scratch Gaps in community services Time, Time, Time

MaCPaC in Practice 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 DNR-CC discussion

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

Baby Mark born at term with Trisomy 18, a lethal genetic disorder. Diagnosis was a surprise Parents had 2 older children who

were teenagers Baby Mark’s birth was eagerly

anticipated

Palliative Care Interventions Experienced parents in unfamiliar territory

Importance of presence Importance of a knowledgeable ally

Recognized importance of family’s faith life Baptism with the family priest Prayer offered at Mark’s bedside Naming the baby

Goal: to take Mark home Referral to hospice

Grief goes on Bereavement packet/sympathy card

Healing continues The power of prayer Reaching out to others

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