The video Rachel's Mom discusses the wonderful support the family received from her daughter's palliative care team at www.ninr.nih.gov. "The day my daughter Rachel was diagnosed with neuroblastoma was very difficult, probably the worst of my life. We didn't have palliative care, and I had to fight with her every day to take her medication … she didn't like to see the nurses and doctors because she was afraid.
"When we were introduced to palliative care, she actually fell in love with her doctor and ran to see him because she was a happy child. And that's what we want our children to be—happy.
"Palliative care really created a huge difference in Rachel's life. You had your oncologists, your palliative care doctors, your nurses, the social workers. You also had the alternative therapy doctors very involved. The best part was that I became part of the team.
"I was amazed at the difference in the quality of care the family received, especially the other siblings: the emotional care through the social workers, the child life specialists. Even the doctors visited with the children to answer their questions. No matter what the diagnosis it is so important to be introduced from the beginning. Palliative was central to the treatment …"
Frequently Asked Questions
What is palliative care, and when is it provided?
Palliative care combines pain and symptom management with spiritual support, counseling, and social services. It can help prevent or manage the symptoms of your child's illness, and the side effects of treatment. By relieving physical discomfort and emotional distress, it can enhance the quality of life. It can be helpful across a range of serious illnesses or conditions, is available at any time during an illness, and does not depend on whether your child's condition is curable.
Does my child have to be in hospice care to receive palliative care?
No, your child can receive palliative care in any setting (at the hospital, in an outpatient center, or in your home) and at any time during their illness.
How can palliative care help my child and our family?
Palliative care is meant to help ease pain, breathing difficulties, nausea, and any other distressing symptoms your child may have. It also includes planning for your child's future needs, support for family members, including other siblings, and coordination of your child's care with all of their healthcare providers. Your child's primary healthcare provider can help you include palliative care services.
Who provides palliative care?
Members of a palliative care team designed to meet your child's specific needs. The team may include doctors, nurses, social workers, pharmacists, chaplains, counselors, and nutritionists. They manage physical symptoms, such as pain, as well as provide emotional, psychosocial, and spiritual support. Team members spend time with you and your child to fully understand your needs.