In the United States, there are very active and effective hospice home care services for children but few residential hospices. Hospice organizations ease the transition from hospital to home and provide support for the entire family. Hospice personnel ensure adequate pain control, allow children to control their last days or weeks of life, and provide active bereavement support to the family after the child’s death.
If the family wishes for the child to die at home, a smooth transition usually occurs from the oncology ward to home hospice care. Unfortunately, sometimes children are not referred to hospice, and the parents are left to deal with their child’s 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 organization in your area. Before you leave the hospital, it is wise to find out the name of a contact person at the agency who 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 online at www.chionline.org or by phone at (703) 684-0330.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Overview of Childhood Leukemia
- 3. Acute Lymphoblastic Leukemia
- 4. Acute Myeloid Leukemia
- 5. Juvenile Myelomonocytic Leukemia
- 6. Chronic Myelogenous Leukemia
- 7. Telling Your Child and Others
- 8. Choosing a Treatment
- 9. Coping with Procedures
- 10. Forming a Partnership with the Medical Team
- 11. Hospitalization
- 12. Central Venous Catheters
- 13. Chemotherapy and Other Medications
- 14. Common Side Effects of Treatment
- 15. Radiation Therapy
- 16. Stem Cell Transplantation
- 17. Siblings
- 18. Family and Friends
- 19. Communication and Behavior
- 20. School
- 21. Sources of Support
- 22. Nutrition
- 23. Insurance, Record-keeping, and Financial Assistance
- 24. End of Treatment and Beyond
- 25. Relapse
- 26. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups