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TERMINALLY ILL CHILD

The Dying Process

The body goes through many changes in the dying process. Knowing the common symptoms of impending death may help families and children be prepared for them when they occur. In some cases, the dying process can be very long. Understanding the physical and mental changes the body goes through as death occurs, may help alleviate some fears and misconceptions about death. Always discuss any concerns or questions with your child's physician.

The following is a list of common symptoms that death is approaching. However, each child may experience symptoms differently. Symptoms may include:

  • Changes in respirations may occur. Slow and fast respirations or long periods without a breath are common in the dying child. Moaning may occur with breaths and does not necessarily mean the child is in pain.
  • Respiration may be noisy from secretions the child is unable to clear from his/her throat or lungs.
  • Physical disfigurement may occur from a progressive tumor.
  • The skin color usually changes to pale, bluish, mottled, or blotchy. The changes occur due to a decrease in oxygen and the body's circulation slowing down.
  • The child may suddenly become incontinent (unable to control bowel and/or urine elimination).
  • Mental confusion or decreased alertness may occur just prior to death.

Death has occurred when the child's heart is not beating and there are no signs of breathing.

Care of the child at the time of death:

Parents need to know that when a child dies at home in hospice care, that it is not an emergency. (If paramedics are called, according to law, they must attempt to resuscitate the child, even if it is against the families' wishes.)

The family is provided as much time as needed before the child is removed from the home or hospital setting. This time is for the privacy of the family and loved ones and may include: holding, bathing, and/or dressing the child, or spiritual or cultural rituals.

Even when death is anticipated, the family will be in shock and will be grieving. Funeral and autopsy arrangements, made prior to the time of death, will need to be processed.

Click here to view the
Online Resources of Care of the Terminally Ill Child

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It is important to remember the health information found on this website is for reference only not intended to replace the advice and guidance of your healthcare provider. Always seek the advice of your physician with any questions you may have regarding a medical condition. If you think you may have a medical emergency, call your physician or 911 immediately.
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