The National Hospice and Palliative Care Organization offers some advice to families facing such a situation.
Caring for a seriously ill or dying child is a difficult journey to travel for a family. In addition to the medical challenges that can be overwhelming for all involved, other aspects of life are affected. For example, additional stressors for parents can be things like lack of sleep, money worries, work pressures, the needs of other children, a spouse and relatives—everything has an effect on one’s ability to cope.
Parents are reminded that hospice and palliative care services should be an important part of your child’s care plan – this can be in addition to concurrent disease-modifying therapies.
Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the person’s needs and wishes. Family caregivers also receive support.
For pediatric patients, palliative/hospice care is provided along with concurrent disease-modifying therapy when disease-modifying therapy is appropriate, or as the main focus of care when disease-modifying therapies are no longer effective and comfort is of utmost importance.
Some families may be reluctant to consider palliative/hospice care because they mistakenly think it means “giving up” on the child. But that is not the case at all. Rather, hospice and palliative care can bring support for the child and family that will make everyone, especially the ill child, feel much better.
Many hospices throughout the U.S. offer care for children with a life-limiting illness, so it’s important to contact local hospices in your community to see which programs might specialize or have experience caring for pediatric patients. Similarly, many children’s hospitals have excellent pediatric palliative/hospice care programs in place.
Whether you reach out to a community hospice or a hospital’s pediatric palliative/hospice care program, it is important for the child’s doctor and the hospice/palliative care medical director to evaluate the progression of a child’s illness and determine if the time is right for pediatric palliative/hospice care.
The doctor caring for a child or a social worker can help a family contact a palliative/hospice care program and assist with a referral.
Health insurance may cover the same palliative/hospice services for a dependent child as it does for an adult. Families should speak with their health insurance representative. If a family does not have health insurance, a seriously ill child may be eligible for Medicaid coverage (eligibility for children is based on the child’s status, not the parents’).
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.
NHPCO’s Find a Hospice tool will help people find a program in their community.
NHPCO’s CaringInfo consumer-education website offers some brochures and fact sheets that may be helpful to families or those offering information to families with a seriously ill child.
Some Brochures in English and Spanish (PDFs):
- When Your Child is in PainCuando Su Hijo Tiene Dolor -When Your Child is in Pain in Spanish/English
- Talking With Your Child About His or Her IllnessHablando Co Su Hijo Sobre Su Enfermedad – Talking With Your Child About His or Her Illness in Spanish/English
- Talking to Your Child’s Doctor: When Your Child Has a Serious Illness
- Hablando Con el Medico Sobre Su Hijo: Cuando Su Nino Tiene Una Enfermedad Seria- Talking to Your Child’s Doctor: When Your Child Has a Serious Illness in Spanish/English
- When a Child Dies: A Guide for Family and Friends
- Cuando Muere un Nino: Un Guia Para Familia y Amigos – When a Child Dies: A Guide for Family and Friends in Spanish/English
- Helping Children Cope with the Loss of a Loved One
- Como Ayudar a los Ninos a Afrontar la Muerte de un ser Querido – Helping Children Cope with the Death of a Loved One in Spanish/English
Similarly, NHPCO offers information for professionals about pediatric palliative care on the NHPCO website at nhpco.org/pediatrics.
The challenges for a family of caring for a dying child cannot be overly-emphasized and the value of a trained palliative/hospice care professional can bring support and insight that can prove to be invaluable.
Some facts from NHPCO’s report “Facts and Figures: Pediatric Palliative & Hospice Care in America” (2015 edition).
- Children age 0-19 years accounted for 1.6 percent of all deaths in the U.S. in 2013.
- Fifty-five percent of childhood deaths occurred in infancy and approximately two-thirds of infant deaths occurred in the neonatal period.
- The leading causes of death in infants are congenital malformations/chromosomal abnormalities and disorders related to short gestation and low birth weight.
- Most children in the U.S. die in the hospital, and most in an intensive care unit, however, an increasing number of pediatric patients are dying at home.