5/10/2018 MODULE 8 CARE AT THE TIME OF DEATH IN PEDIATRIC PALLIATIVE CARE. Pediatric Dying and Death. Pediatric Death is a Unique Experience

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1 Curriculum MODULE 8 CARE AT THE TIME OF DEATH IN PEDIATRIC PALLIATIVE CARE Dying and Death How children die Final hours: significant moments for child and family Preparing for death, saying goodbyes, memorymaking Assess final wishes Feudtner & Hexem, 2011 Death is a Unique Experience No typical pediatric death Developmental issues Family is the unit of care Interdisciplinary team approach 1

2 Role of the Nurse in the Final Days Advocate Support Educate Coach Interdisciplinary team collaboration Role of the Nurse in the Final Days (cont.) Be present Physical care Spiritual comfort Honor culture Memory making The Dying Child Awareness of dying Disclosure Communication 2

3 The Family Parents Siblings involve a child life specialist Extended family Site of Death Hospital Home Physical environment Changes should be avoided 3

4 Communication in Last Days Provide information in simple terms, based on readiness Child s awareness of death Presence Education About Last Hours Empowerment Keep instructions simple; repetition Signs, symptoms of dying process Family involvement The Imminently Dying Child Estimating prognosis Organ/tissue donation Signs/symptoms only a guideline Dying process 4

5 Psychosocial and Spiritual Issues Fear Psychosocial assessment Social withdrawal Decreased attention span/ability to concentrate Gradual loss of consciousness Withdrawal Spiritual assessment Near death awareness Family Practice/Ritual Family may have cultural or religious practices surrounding death and dying Always ask about preferences don t assume Rituals Assessing/Managing Physical Symptoms May occur months, weeks, days, or hours before death Evaluate the degree of distress Comfort is the primary focus of care Evaluate benefit of providing interventions which may be disruptive (i.e., monitoring V/S, blood work) Interdisciplinary approach 5

6 Physical Symptoms Onset Confusion, disorientation, delirium Weakness, fatigue Pain changes Restlessness and/or terminal agitation Physical Symptoms (cont.) Alertness/sleep changes Temperature changes Gastrointestinal changes Decreased oral intake Physical Symptoms (cont.) Incontinence or urinary retention Seizures Breathing pattern changes Vital sign changes Continued assessment is important 6

7 The Death Vigil Family presence Common fears Being alone with the child Painful death Time of death Giving last dose McHugh & Buschman, 2016; Steele & Davies, 2015 Death: When the Time Comes Signs and symptoms Parental presence or absence Death pronouncement Communicating the Death Grief Interdisciplinary team approach 7

8 Death in the NICU Communication Provide as much control as possible Coordination of care Withdrawal of interventions Family involvement Care Following Death Removal of tubes, equipment Bathing and dressing the child s body Encourage family participation Respect cultural preferences 8

9 Care Following Death (cont.) Compassionate/sensitive removal of body Rigor mortis Embalming Siblings Funeral home Care Following Death (cont.) Assistance with calls, notifications Destroying medications Autopsy Care Following Death (cont.) Assisting with arrangements Initiating bereavement support 9

10 Impact on Nurse Emotional burden Individual response Parallel suffering Support for the Nurse Ask for help Verbalize Post clinical debriefing Self care/self awareness 10