In the US and Canada, there is a very active and effective hospice system. Hospices ease the transition from hospital to home and provide support for the entire family. Hospice personnel ensure adequate pain control, allow the patient to control the last days or weeks of his life, and provide active bereavement support after death.
Usually, if the family wishes the child to die at home, a smooth transition occurs from the oncology ward to hospice care. Unfortunately, sometimes pediatric patients are not referred to hospice, and the parents are left to deal with their childs last days at home with no experienced help and no clear idea of what is to come. Your nurse practitioner, case manager, or hospital social worker can refer you to or help you find a pediatric hospice in your area. Before you leave the hospital, it is wise to find out the name of a contact person at the agency that will be taking over the home care of your child.
When Jody came home, he was assigned both a pediatric visiting nurse and a hospice nurse. On their first visits, I was handed a great deal of literature to read, including a whole notebook from hospice. I lacked both the desire and energy to read the literature and learn a whole new medical system—let alone two. I just wanted one phone number to call for help, with two or three consistent people to answer.
In actuality, the care we received was wonderful. The primary nurse would call, offer to visit if we wanted it, assess Jody's condition over the phone, handle any questions we had, and would ask if we wanted a call the next day. She would tell us who would be calling if she was not working at the appointed time. Interestingly, the service that I found most beneficial at that time was the nurse running interference for us with the doctor The pain medications needed to be adjusted and changed at times; advice was needed about his intake, his mouth sores, and his hand and foot inflammation. As I, along with Jody, became quieter and more removed from outside activities, even the thought of calling the clinic and being made directly aware of the bustle and demands of that world was very unappealing.
Hospice not only provides assistance in physically caring for your child, it can also provide emotional support for your child, you and your spouse, and any other children in your home. If you have questions about hospice or what support is available, you can contact Children's Hospice International at (800) 242-4453 (800-24-CHILD).
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.