Compassionate Care for Kids: Understanding Pediatric Hospice and Palliative Care Services

Palliative care is appropriate for children facing a wide range of serious conditions, such as:

• Cancer
• Congenital heart disease
• Genetic or metabolic disorders
• Neurological conditions like severe cerebral palsy
• Muscular dystrophies
• Cystic fibrosis
• Complications of prematurity
• Rare or undiagnosed illnesses

It is not limited by prognosis—children can receive palliative care at any stage of their illness and even while undergoing curative treatment.

1. Holistic Symptom Management
   Palliative care teams are experts in controlling pain, nausea, fatigue, breathing difficulties, seizures, and other distressing symptoms—, allowing children to feel more comfortable and present.
2. Emotional and Psychological Support
   Serious illness affects the whole family. Palliative care includes age-appropriate counseling for the child and emotional support for siblings, parents, and caregivers. Lightways Hospice and Serious Illness Care has a team of Child Life Specialists that support children and their families with the stresses of having a loved one who is in hospice or has a serious illness through guiding conversations, caregiver support, coping strategies, therapeutic play, education, advocacy, memory making/legacy building, and bereavement support.
3. Care Coordination and Advocacy
   The palliative team helps works to coordinate between specialists, hospitals, and home care providers—ensuring that the child’s care is seamlesscoordinated, consistent, and family-centered.
4. Spiritual and Cultural Sensitivity
   Families receive support that respects their values, beliefs, and traditions during times of uncertainty and grief.
5. End-of-Life Support (Hospice Care)
   When curative options are no longer effective, pediatric hospice care offers compassionate comfort, memory-making opportunities, and dignified support—often in the home environment, where children and families feel most at ease.

“It means we’re giving up.”
Not true. Palliative care is about living better—not surrendering. Many children continue treatments like chemotherapy, surgeries, or experimental therapies while receiving palliative support.

“Hospice is just for adults.”
Pediatric hospice is tailored to the unique needs of children and their families. It includes specialized staff trained to handle both complex medical care and emotional dynamics specific to pediatric illness.

“It’s only for children who are dying.”
Palliative care is beneficial from diagnosis, through treatment, remission, or in rare cases, recovery. It is as much about living well as it is about supporting the end-of-life process, when needed.

“My child’s doctors will tell me when it’s time.”
Unfortunately, many families are referred too late. It’s okay—and often beneficial—for families to ask about palliative care early in the disease course.

Coverage for concurrent care varies by insurance provider and plan type. Lightways Hospice and Serious Illness Care is committed to working with families to help navigate their individual coverage and benefits.

Additionally, Lightways provides charity care and financial assistance to eligible families to ensure that care is accessible regardless of financial circumstances.
Please contact us at 815.740.4104 or speak directly to a social worker assigned to your case for more information on how to apply for charity care or financial assistance.

Concurrent care allows children with serious illnesses to receive both curative treatments (such as chemotherapy, disease-modifying therapies, or other medical interventions) and palliative or hospice care at the same time. This approach ensures that children and their families receive symptom management, pain relief, and emotional support while continuing treatments aimed at their underlying condition.

Coverage for concurrent care varies based on insurance plans and state-specific Medicaid policies. Families should check with their insurance provider to understand their specific benefits. If you have questions, our Lightways team is available to help guide you through the process.