About This Presentation. Dying is a Unique Experience. The Nurse, Dying and Death. The Dying Child

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1 20 May 2005 are at the Time of Death in arrated by Mardell Davis, PhD, R About This Presentation This presentation is part of the nd of ife ursing ducation onsortium (-PP) training program. The project is a national end-of-life care nursing education initiative administered by the American Association of olleges of ursing, Washington, D.., and ity of Hope ational Medical enter, Duarte, alifornia. The -PP was supported by a grant from The Robert Wood Johnson Foundation. This on-line presentation of - was a collaborative effort among ure4kids, International Outreach Program of St. Jude hildren's Research Hospital, the ity of Hope Medical enter and the American Association of olleges of ursing. Melody Hellsten,, MS, APR-B, PP University of Texas Health Sciences enter arole Kenner, DS, R, FAA University of Oklahoma Health Sciences enter Materials are copyrighted by the American Association of olleges of ursing and ity of Hope ational Medical enter, and are used with permission. The urse, Dying and Death 53,000 children die each year urses are exposed to death in many settings Interpersonal competence Being present and bearing witness Interdisciplinary care Dying is a Unique xperience There is no typical pediatric death hildren s understanding of death and dying urses advocate for choices Dying as a Physical, Psychological, Social and Spiritual xperience Family as unit of care Interdisciplinary care important The Dying hild Working with child and extended family hildren s awareness of dying hildren s communication ncourage parent participation Siblings and extended family 1

2 hild and Family Preparation urses advocate for choices Discuss preferred location for child s death Avoid changes at final stage unless desired by family The ove of a Family Open, Honest ommunication onvey caring, sensitivity, compassion, be open; avoid overloading with information Provide information in simple terms, based on their readiness hild s awareness of dying Maintain presence if desired ducation about What to xpect - Time of Death ducation creates empowerment Keep instructions simple - verbal and written Signs, symptoms of dying are management The Imminently Dying hild stimating prognosis Signs/symptoms only a guideline Dying process A Brief ife 2

3 Psychological and Spiritual Interventions Fear of dying process (including pain) Fear of abandonment Fear of unknown earing death awareness Withdrawal; spiritual care licit desired goals/rituals Drifting in and out of present Physical Symptoms onfusion, disorientation, delirium Weakness and fatigue Drowsiness, sleeping Decreased intake; lack of swallowing/dysphagia hanges in pain Physical Symptoms (cont.) Surges of energy Restlessness/agitation Fever Bowel changes Incontinence Seizures If Only It ould Be Me Symptoms of Imminent Death Decreased urine output old and mottled extremities Vital sign and breathing changes Respiratory congestion Decreased O The Death Vigil Family presence ommon fears Being alone with the child Painful death Time of death Giving last dose 3

4 ursing Interventions ollaboration with physician/team Reassurance and education Role model comforting Physical comforting Spiritual care; honor culture Rituals, memory making Grandmother's Touch Death: When the Time omes ommunicating the death Inform family What to do Signs and symptoms of death Death pronouncement Identify child General exam and documentation Dealing with coroner/pathologist ultural onsiderations Attentiveness to specific tasks, rites at time of death Rituals Before death After death are Following Death Preparing the family are after death valuate circumstances Organ donor procedures Other support (IDT, resources, organizations) The ightmare Begins 4

5 are Following Death (cont.) Removal of tubes, equipment Bathing and dressing the body ncourage family participation Respect cultural preferences are Following Death (cont.) ompassionate/sensitive removal of the body Rigor mortis 2-4 hrs after death mbalming Special attention to siblings (call IDT help if needed) are Following Death (cont.) Assistance with calls, notifications Destroying medications Assisting with arrangements Initiating bereavement support Support for the urse Ask for help Verbalize Post clinical debriefing Self care/self awareness onclusion Art work are of the child and family at the time of death creates unique concerns, best provided by the collaboration of an interdisciplinary team The nd of the Day 5

6 Acknowledgments We would like to acknowledge the following for their help and support in the development of the project: Ayda ambayan, R, DS (content reviewer) Janet G. Alexander, R, dd (content reviewer) Mardell Davis, PhD, R (narrator) ity of Hope Medical enter Betty Ferrell, R, PhD Rose Virani, R, MHA American Association of olleges of ursing Anne Rhome, MPH, R Pam Malloy, R, M, O Special acknowledgment: onnie Rose, Artist/Illustrator Angel's Watch St. Jude hildren s Research Hospital nd More medical education materials are available at: You may print and download content for personal educational use only. All material is copyrighted by the author of the content or St. Jude hildren s Research Hospital. See legal terms and conditions at 6