Nursing care of the child and family at end of life

Nursing care of the child and family at end of life

  • Regardless of where the child is cared for during the terminal stage of illness, both the child and the family usually experience fear of
    • Pain and suffering
    • Dying alone (child) or not being present when the child dies (parent)
    • Actual death
  • Fear of pain and suffering
    • Pain and symptom management
      • Ethical principle of double effect
        • An action that has one good (intended) and one bad (unintended but foreseeable) effects is permissible if the following conditions are met:
          • The action itself must be good or indifferent. Only the good consequences of the action 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 foreseeable bad effect to occur.
    • Parents’ and siblings’ need for education and support
      • This empowers parents and provides a sense of control over the child’s comfort and well-being, reducing their fear that their child will be in pain or suffering as he or she is dying.
        • Better bereavement outcomes (e.g., adaptive coping, family cohesion, and less anxiety, stress, and depression) have been reported by parents who were actively involved in the care of their child
      • Nurses can assist the family by helping the parents identify ways to involve siblings in the caring process, perhaps by bringing some supplies or a favorite toy, game, or food item. 
        • Parents should also be encouraged to schedule time focusing on the siblings.
        • Helping parents identify a trusted friend or family member who can sit with the ill child for a short period will allow them to attend to their own needs or those of their other children.
  • Fear of dying alone or of not being present when the child dies
    • When a child is being cared for at home, the burden of care on parents and family members can be great. 
      • Often, as the child’s condition declines, family members begin the “death vigil.” 
      • Rarely is a child left alone for any length of time. 
    • This can be exhausting for family members, and nurses can assist the family by helping them arrange shifts so that friends or family members can be present with the child and allow others to rest. 
    • If the family has limited resources, community organizations, such as hospice or churches, often have volunteers who are willing to visit and sit with children. 
    • It is important that whoever is sitting with the child be aware of when the parent(s) would like to be notified to return to the child’s bedside
    • When a child is dying in the hospital, the parents should be always given full access to the child.
    • If the parents need to leave, they should be provided with a pager or other means of immediate communication and alerted if staff members note any change in the child that may indicate imminent death. 
    • Nurses should advocate for parents’ presence in intensive care and emergency departments and attend to the parents’ needs for food, drinks, comfortable chairs, blankets, and pillows.
  • Fear of actual death
    • Home deaths
      • Physical signs of approaching death
        • Loss of sensation and movement in the lower extremities, progressing toward the upper body
        • Sensation of heat, although the body feels cool
        • Loss of senses:
          • Tactile sensation decreasing
          • Sensitivity to light
          • Hearing the last sense to fail
        • Confusion, loss of consciousness, slurred speech
        • Muscle weakness
        • Loss of bowel and bladder control
        • Decreased appetite and thirst
        • Difficulty swallowing
        • Change in respiratory pattern:
          • Cheyne-Stokes respirations (waxing and waning of depth of breathing with regular periods of apnea)
          • “Death rattle” (noisy chest sounds from accumulation of pulmonary and pharyngeal secretions)
        • Weak, slow pulse; decreased blood pressure
    • Hospital deaths
      • Children dying in the hospital who are receiving supportive care interventions experience a similar process. 
      • Death resulting from accident or trauma or acute illness in settings such as the emergency department or intensive care unit, often requires the active withdrawal of some form of life-supporting intervention, such as a ventilator or bypass machine.
      • These situations often raise difficult ethical issues, and parents are often less prepared for the actual moment of death.
      • Nurses can assist these parents by providing detailed information about what will happen as supportive equipment is withdrawn, ensuring that appropriate pain medications are administered to prevent pain during the dying process and allowing the parents time before the start of the withdrawal to be with and speak to their child.
      • It is important that the nurse attempt to control the environment around the family at this time by providing privacy, asking if they would like to play music, softening lights and monitor noises, and arranging for any religious or cultural rituals that the family may want performed.

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