Diseases & Conditions : Care of the 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 happen. In some cases, the dying process can be very long. Understanding the physical and mental changes the body goes through as death happens, may help ease some fears and misconceptions about death. Always discuss any concerns or questions with your child's healthcare provider.
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 happen. Slow and fast respirations or long periods without a breath are common in the dying child. Moaning may happen 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 or her throat or lungs.
Physical disfigurement may have happened from a progressive tumor.
The skin color usually changes to pale, bluish, mottled, or blotchy. The changes happen 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 happen just before death.
Death has happened 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, it is not an emergency. (If paramedics are called, depending on local law and whether appropriate documentation is available, they may be required to 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 before the time of death, will need to be processed.