If your child has a serious or life-limiting illness, you want to do everything you can to ease your child’s pain and help them live as fully and comfortably as possible. This can be an incredible strain on parents; lack of sleep, money worries, work pressures, the needs of other children, your spouse and relatives—everything influences your ability to cope.
It is important to learn as much as you can about your child’s illness. Do not be afraid to ask lots of questions of the doctors, nurses and therapists that might be providing care for your sick child. If you are unsure about what they are telling you, it’s okay to ask them to explain it again in a different way. They want to make sure you understand everything that is happening.
Children’s National Medical Center in Washington, DC, is recognized as one of the leading hospitals in the country that provides care to young people. The Children’s National website offers information on a wide range of conditions and treatments that may help you learn more about a serious illness.
Depending on the severity of your child’s illness, pediatric palliative care or hospice care might be something for you to consider. Palliative care helps throughout a serious illness, and when a cure is no longer possible, hospice care can provide incredible support to you, your child and your family. Many hospices provide pediatric palliative care, so you should consider reaching out to them to see how they may support your child and family. You may be reluctant to call hospice because you feel it means you are giving up. But you really aren’t. You are getting support for your child and your family that will make everyone, especially your child, feel much better. Ask your doctor or social worker to call for you and make a referral if you would rather not make the call yourself.
Although many hospices will provide care for children with a life-limiting illness, your child’s doctor and the hospice medical director will evaluate the progression of your child’s illness and determine if the time is right for hospice. Your doctor and a hospice nurse will answer any questions you may have and tell you what to expect and what you can do to make your child more comfortable at this time.
Your health insurance may cover the same hospice services for a dependent child as it does for an adult. Talk with your health insurance representative. If you do not have health insurance, your child may be eligible for coverage via Medicaid’s Children’s Health Insurance Program (CHIP) which can work along with Medicaid if he or she is a citizen or a lawfully admitted immigrant, even if you are not. Eligibility for children is based on the child’s status, not the parents. Also, if someone else’s child lives with you, the child may be eligible even if you are not because your income and resources will not count for the child.
Always check with your local hospice about available services. Remember, it is a tradition of hospice to offer services based on need, rather than on the ability to pay.
Additional Resources on Caring for Children with Serious Illness
NHPCO has additional brochures about caring for children that you may download:
- When Your Child is in Pain
- Talking With Your Child About His or Her Illness
- Talking to Your Child’s Doctor: When Your Child Has a Serious Illness
- When a Child Dies: A Guide for Family and Friends
- Helping Children Cope with the Loss of a Loved One
The Conversation Project has a guide on how to start talking with a child who is living with a serious illness about the health care that is right for them.