We expect that children will get sick from time to time. But we don't expect them to die. The very idea of a child dying is so filled with emotion and pain that we don't even want to think about it. However, children sometimes do die. And they need our help to live -- and to die -- well.
Brittney is thirteen. Cystic fibrosis threatens to take her life before she has a chance to grow up. What choices can her family and doctors make to allow her a normal adolescence? And what rights does she have to make life-and-death choices of her own? Brittney faces the hard decision of whether to go on the "list" for a lung transplant. While a new lung might give her some additional years, the operation and its aftermath pose enormous risks.
Lemontay does not make his own choices. He is five, but has the mental capacity of a 6-week-old baby. Severe and multiple medical problems make each sunrise a small miracle for this child. Lemontay cannot talk, he cannot move his body by himself. He has great trouble breathing. But he is surrounded by a loving and caring family. Is this a life worth living? What does quality of life mean? And who determines when this child has been through enough?
Children living with terminal illnesses provide a unique and particularly difficult challenge for healthcare providers, families and our society as a whole. Children are not "little adults". And solutions for children living in the shadow of death cannot be simply extrapolated from adult hospice programs. End-of-life care for children must not only manage the physical symptoms of the child, but address social and psychological demands of the whole family.