This is a difficult topic to think about and worse to live through for family members. However, death of an adopted child is a reality for some parents of special needs children. Many families have pursued adoptions of children whom they knew were dying so that the child could have family support during the end of life. Others found out after the adoption that their child had a terminal illness. Knowing that a child’s death is imminent because of disease, injury, abuse, or birth defect does not make it any easier to accept. The adoptive parents, grandparents, siblings, friends, and medical team are those closest to the child and obviously will be devastated throughout the experience, and ultimately upon the child’s demise.

Every year in the United States more than 55,000 children die. However support for the family and for the dying child to deal with the pain, symptoms, and family stress of a life-threatening illness is not widely available. A recent survey of parents who had a child die indicated their desire for changes in the end of life care provided to children and their families. Parents who responded, mostly married mothers with an average age of 42, identified communication, respect, and displays of emotion by medical staff as specific areas that need to be changed.

Because it is unnatural and uncommon for children to die, most medical personnel who work primarily with children do not have a lot of experience in dealing with patient death. Their own discomfort or feelings of inadequacy may prevent them from responding compassionately to a grieving family. The survey, published in the journal Pediatrics, indicated that most pediatric deaths occur in a critical-care setting after the removal of mechanical ventilation.

According to the survey, caregivers need to be honest and deliver complete information to the parents of a dying child. Doctors should consult with each other and then offer parents a consensus opinion. Parents coping with a dying child cannot sort through conflicting reports from numerous doctors. Create a scheduled meeting time; parents can be devastated by just barely missing the doctor who is on rounds. They need to be able to leave periodically to shower, eat, and deal with other parts of their lives without suffering guilt for missing the doctor. The parents need to be respected and acknowledged as a vital part of the decision making process. The most important aspect for the dying child was pain management.

Friends and people in the community often do not know what to say to family members who have lost a child. Because of that, they tend to avoid the family members, isolating them to cope with their pain alone. Small things often mean a lot to family coping with a dying child. A touch, a tissue, sitting down to talk, or a hug can make a big difference.

Photo Credit 2006 Hamed Saber “In the Shadow of a Flower”
HealthDay News Copyright (c) 2007