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Module 8:Care at the Time of Death in Pediatric Palliative Care
CCEENNLLEEEnd-of-Life Nursing Education Consortium
Pediatric Palliative Care
CCEENNLLEE Pediatric Palliative Care
CCEENNLLEE Pediatric Palliative Care
Pediatric Dying and Death
How children die Final hours
Field & Behrman, 2003
CCEENNLLEE Pediatric Palliative Care
Pediatric Death is a Unique Experience
No typical pediatric death Developmental issues Family is the unit of care Interdisciplinary team approach
CCEENNLLEE Pediatric Palliative Care
Role of the Nurse in the Final Days
Advocate
Educate
Coach Interdisciplinary team
collaboration
CCEENNLLEE Pediatric Palliative Care
Role of the Nurse in the Final Days (cont.)
Physical care Spiritual comfort Culture Memory-making
CCEENNLLEE Pediatric Palliative Care
The Family
Parents
Siblings—involve a child life specialist
Extended family
CCEENNLLEE Pediatric Palliative Care
Site of Death
Hospital Home Physical environment Changes should be avoided
CCEENNLLEE Pediatric Palliative Care
Communication in Last Days
Provide information in simple terms, based on readiness
Child’s awareness of death Presence
CCEENNLLEE Pediatric Palliative Care
Education about Last Hours
Empowerment Keep instructions simple;
repetition Signs, symptoms of dying
process Family involvement
CCEENNLLEE Pediatric Palliative Care
The Imminently Dying Child
Estimating prognosis Signs/symptoms only a guideline Dying process
CCEENNLLEE Pediatric Palliative Care
Psychosocial and Spiritual Issues
Fear Near death awareness Withdrawal Spiritual care
CCEENNLLEE Pediatric Palliative Care
Family Practice/Ritual Family may have cultural or
religious practices surrounding death and dying
Always ask about preferences—don’t assume
Rituals
CCEENNLLEE Pediatric Palliative Care
Physical Symptoms
Onset Confusion, disorientation,
delirium Weakness, fatigue Pain changes Restlessness and/or terminal
agitation
CCEENNLLEE Pediatric Palliative Care
Physical Symptoms (cont.)
Alertness/sleep changes Temperature changes Gastrointestinal changes Decreased oral intake
CCEENNLLEE Pediatric Palliative Care
Physical Symptoms (cont.)
Vital sign changes Breathing pattern changes Incontinence or urinary retention Seizures Continued assessment
CCEENNLLEE Pediatric Palliative Care
The Death Vigil
Family presence Common fears
Being alone with the child Painful death Time of death Giving “last dose”
Lo, 1996
CCEENNLLEE Pediatric Palliative Care
Death: When the Time Comes
Signs and symptoms Parental presence or absence Death pronouncement
CCEENNLLEE Pediatric Palliative Care
Death in the NICU
Communication Continuity of care Withdrawal of interventions Family involvement
CCEENNLLEE Pediatric Palliative Care
Care Following Death
Removal of tubes, equipment Bathing and dressing the child’s
body Encourage family participation Respect cultural preferences
CCEENNLLEE Pediatric Palliative Care
Care Following Death (cont.)
Compassionate/sensitive removal of body
Rigor mortis Embalming Siblings Funeral home
CCEENNLLEE Pediatric Palliative Care
Care Following Death (cont.)
Assistance with calls, notifications
Destroying medications Autopsy
CCEENNLLEE Pediatric Palliative Care
Care Following Death (cont.)
Assisting with arrangements Initiating bereavement support
CCEENNLLEE Pediatric Palliative Care
Impact on Nurse
Emotional burden Individual response Parallel suffering
CCEENNLLEE Pediatric Palliative Care
Support for the Nurse
Ask for help
Verbalize
Post-clinical debriefing
Self care/self awareness