with guilt after they are gone Culture o Each culture has its own way of defining, addressing, and acknowledging death o Baptism o Dispensation of body o Autopsy o Donation o Keeping vigil o Returning to a prior faith o Nurse Responsibilities Assisting with spiritual practices Supporting the family’s needs Avoiding judgment Advanced care planning o Identify the decision makers and make sure all on the care team are aware o Describe expected changes in child’s functional ability and quality of life o Determine goals Cure vs. comfort o Anticipatory guidance about changes to expect near death Palliative Care o Start at diagnosis and occurs simultaneously with treatment of the disease o Relieves suffering (physical, social, emotional, and spiritual) Pain, sleep disturbances, anxiety o Home, hospital, or other facility o Appropriate for conditions that may be cured but may also experience treatment failure Hospice o Philosophy of care for a terminally ill child o Treatment of the disease has stopped, and death is expected in 6 months or less , regardless of treatment o Focused on comfort Ethical principal of double effect o Multidisciplinary team for comprehensive care o An action that has one good ( intended ) and one bad ( unintended but foreseeable ) effect is permissible if the following conditions are met: Only the good consequences must be sincerely intended. The good effect must not be produced by the bad effect. There must be a compelling or proportionate reason for permitting the forseeable bad effect to occur. Ethical issues o Withdrawing care/treatment May feel they are abandoning the child Not an all-or-nothing approach Sedatives and analgesia o Refusal to treat – goes to Ethics committee if one time thing Parents choosing not to treat a curable condition o DNR and Limitations of Care Supporting the family o Encourage family participation at death Holding, touching, snuggling o Some parents feel the need to give permission to go o Organ-tissue donation o Postmortem care o Hand and foot molds, lock of hair, hand prints 50% of parents get divorced after child death – make 2 molds o 5 stages of grief Denial Anger Bargaining Depression
Acceptance Common nurse reactions o Physical Disturbances in eating and sleep patterns Difficulty concentrating Headache/fatigue Nausea/vomiting/ diarrhea Tachypnea/tachycardia Muscular tension o Psychological Fear, grief, remorse Isolation Frustration, anger, irritability Depression Self-doubt Flashbacks Coping for the Nurse o EAP – Employment Assistance Program o forYOU – debriefing can openly speak (don’t have to worry about HIPPA) o Positive coping Debriefs Physical exercise Routines Give yourself permission to feel Do something nice for yourself Neonatal Intensive Care Unit o Prematurity – majority Never been home from the hospital – may have came from another hospital o
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- Spring '17
- Mucus, pain scale