In the United States, there are very active and effective hospice home care services for children. 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 pediatric patients 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.
Yesterday we got a visit from the hospice nurse. We had been putting it off but felt that we should have it in place for when we really need it for Ryan. Everyone keeps telling me what a great thing it is, and maybe that’s how they feel, but personally, birthday parties are great, Disneyland® is great, even Chuck E. Cheese® is great. Hospice is not great.
When our children were babies and learning, I always used the principle of reinforcing things I wanted them to learn or understand with all their senses: hearing, seeing, touch, smell, and taste. During Jen’s last days, we kept her room filled with light the way she liked it, and even a soft low light at night so whenever her eyes opened so she knew one of us was right there. We played her favorite music continuously, more upbeat during the day and softer choices at night, and we talked with her and then to her when she could no longer respond with her voice, although the squeeze of her hand and her big blue eyes spoke volumes.
We touched her constantly, sometimes just sitting next to her holding her hand and not moving, other times stroking her head, rubbing “udder” cream on her elbows and heels so she didn’t get bedsores. She had lost quite a bit of her sense of smell, but we kept everything very fresh and all the flowers that came to the house were all around her because she visually could remember their wonderful scent. We learned to use the great swabs that hospice provided with very cool water and a bit of mint Listerine so her mouth felt clean and fresh, especially as she became less able to take care of herself and even more so when she was no longer able to take in water and then food. One of the nurses told us to take ice chips and put them in a very worn piece of cloth and make it tiny so she wouldn’t gag and let in rest in her mouth for a few minutes at a time so she had some moisture, and when that became impossible because she could hardly open her mouth, we swabbed her lips and the gums outside of her closed teeth. All this was meant to convey the message you are loved and cared for and we will be right here for you every step of the way.
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 (800) 242-4453 (800-24-CHILD).
We were very fortunate in our hospice experience, which lasted a mere 8 days. On the first day, a nurse arrived to meet all of us. She came in with a big smile and introduced herself. The nurse began by taking a very complete medical history, and I remember being surprised by the depth of information she wanted. It was like she wanted to fully understand the entire brain tumor journey and what he had been through, while I suppose I had expected her to laugh off with disinterest everything that had happened before “the end,” as if it wouldn’t matter anymore. She listened intently, reacted appropriately at incidents that had been a bit unusual, and wrote down a great deal. Then she did a brief exam, just blood pressure, pulse, and general appearance, and assured him that she wouldn’t bother him anymore. He relaxed when he realized that she wouldn’t be poking him as so many others had already done. We had been apprehensive before her arrival, but afterward, it felt like the night crew had arrived after a very long day shift.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites