Mayo Clinic Children's Center Introducing the by pptfiles


									          Facing the Death of a
          Perinatal and Pediatric
          Palliative Care and

Joanne Cacciatore, Ph D, MSW, FT
Angela O’Neil, MD
Introductions. . .
It always starts with a story. .
Karla &
Love Story.
What do you wish would
have been done
  How information is given.


Who should give information?
With or without
parent input?

           { Parent concerns
People who have not had a child die cannot
 understand that.

They can try to understand, they can attempt to
 imagine what it’s like, they can absolutely be
 helpful and supportive and witness our pain
 without trying to change it.

But they cannot know.
Children with Life-Threatening
  Epidemiology of Childhood

2011 data 6.9 million children died
(2.6 million/yr stillbirths)                                Infant/Child Death
    73% infants <1 (n=5m)
        52% stillbirth (n=2.6m)                                                    <Age 1
        20% within first 24 hrs (n=975k)                                           1 to 4
                                                                                   4 to 9
       14% between 1-30 days (n=732k)
                                                                                   9 to 19
       14% between 1 -12 mo (n=732k)
    7.5% age 1-4 (n=516k)
    5.3% age 4-9 (n=365k)
    14.2% age 9-19 (n=980k)

 Froen, Cacciatore, et al., 2011. The Lancet Series; Carter, Levetown and Friebert. Palliative
 Care for Infants, Children and Adolescents. Second Edition. 2011.
     Effect of Palliative Care in
     the Hospital
Increased hospice discussion (22%
Earlier DNR order (6 days)
Fewer deaths in the ICU (16% less)
Child suffered less pain (19%)
Parents felt more prepared during
  child’s last month of life and at

        Wolfe, J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, et al: Easing of suffering in children with
        cancer at the end of life: is care changing? J Clin Oncol 26(10):1717-1723, 2008.
Active, total care of child’s body, mind and spirit
Begins when illness is diagnosed
Continues regardless of whether or not a child
receives treatment directed at the disease
Address physical, psychological & social distress
Multidisciplinary approach
Provided anywhere, including the home

                         {   WHO Definition of
                             Palliative Care
WHO Definition of
Palliative Care
     Appropriate for children and families with life-
       threatening illness
     Enhances quality of life
     Intends to neither hasten or postpone death
     Any child with life limiting disorder
To have care of Palliative Care team-

The child does NOT need to be:
   Dying or actively dying
   On Hospice
   “Giving up hope” or “Doing nothing”
   DNR and/or DNI
Who Should Get a Peds
Pallliative Care consult?
     The child can be:
        Receiving curative treatment
        Receiving complex care
        Hoping for a miracle
        Local or long distance patient
Why consult Palliative care

     Serious illness affects:
        Patient quality of life
        Sibling growth, development, and behavior
        Parental quality of life (esp bereavement)
        Interpersonal relationships
        Finances and career
        Family structure
        Structure of home
        Individual and collective stress levels
   Effect of Critical Illness on
Altered parental role
Fear of child’s suffering
Fear of child’s death
Unknown long term outcome
Inconsistent information
Minimal communication
Interpersonal relationships
Concerns over economic outcomes

     Needle, JS, O’Riordan, M, Smith, PG. Parental anxiety and medical comprehension within 24 hours of
     a child’s admission to the PICU. Pediatric Crit Care Medicine 10(6), 2009, 668-674.
Perinatal Palliative Care Program

  • To help families understand the diagnosis and
  probable outcomes for their baby
  • To help families make decisions based on the
  love that they have for their baby
  • To assist families in cherishing the time
  between the diagnosis and death of their baby
  • To honor the unique and special qualities of
  each baby
  • To emphasize the quality of life over the
  quantity of life
  • To reduce the emotional, spiritual and
  psychosocial suffering using interventions
  sensitive to cultural, religious and personal beliefs
Palliative Care Team
Services are additive to care already in progress

Supportive, not a substitute
   How can we help? -How can we help the FAMILY?

Focus on psychosocial dimension, ethical end of life decision
making and alleviation of distressing symptoms

Continuity of care
 Palliative Care Team
Perinatal Palliative Care
   Fetal or neonatal diagnosis of life limiting anomaly
   Extreme prematurity (22-24 6/7 week gestation) wishing to pursue
     comfort care
   Critically ill neonates refractory to medical treatment

Pediatric Palliative Care
   Terminal diagnosis of life limiting disorder or disease
   Treatment and management of pain
   Palliative Care Team
Interdisciplinary Team Members
  Child Life
  Chaplain or other spiritual leader
  Social Work
“Unity is strength… when there is teamwork and
  collaboration, wonderful things can be
  -Mattie Stepanek (1990-2004)
I am a grieving mother, a bereaved mother who
chooses to continue to live.

 I can only hope that my life can somehow reflect
even a small bit, the beauty and love I was so
privileged to touch when I met my son..

       and shared in his life,
                            and in his death.
The love of a parent is not contingent upon the
 amount of time we had with our child.
Love simply cannot be measured in time.”

            Joanne Cacciatore

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