Pediatric Program
The Lightways Pediatric Care Program team helps families and children with life-limiting illnesses through pediatric palliative care, pediatric hospice care and Child Life Specialists.
Hospice & Palliative Care for Children
Parents who dream of welcoming a child into their family envision a healthy and happy future. That joy can be deeply intertwined with the unexpected sorrow of learning about a life-limiting condition.
Hospice and palliative care for children, from birth to 21 years old, incorporates specific principles and values for the care of seriously ill children and their families. The goal is to enhance the quality of life for your child and family as defined by each child and family unit. Lightways includes the child and family in the decision-making process regarding services and treatment choices to the fullest degree that is possible and desired. It addresses, in a comprehensive and consistent way, the physical, developmental, psychological, social and spiritual needs and issues of children and families through an individualized plan of care. It ensures continuity and consistency of care in all settings where services are provided.
When a child has a life-limiting illness, Lightways Pediatric Hospice and Serious Illness Care Team can help.
Pediatric Hospice & Palliative Care Coordinated at Home
Pediatric hospice and palliative care provides coordinated home care through an interdisciplinary team which is coordinated by a physician and registered nurse. The team provides medical, nursing, psychosocial and spiritual care as core services, along with trained volunteers and other services as appropriate. Hospice care for children is also attentive to the needs related to loss and grieving for all concerned both prior to and following death. Nursing services are available 24 hours a day as needed regardless of the setting. Services are increased or decreased depending on your child’s needs.
The grieving process may begin as families deal with the loss of the healthy childhood they anticipated for their child, the potential suffering the child may endure, and the overwhelming difficulties to be faced. These emotions inevitably weigh heavily on the most optimistic of parents. The strain often takes a heavy toll on family life. Brothers and sisters may compete for attention with the life-limited child; parents may disagree about the degree to which the special child deserves their attention. Dealing with a child that can’t speak, hear, breathe properly, walk, or achieve many of the milestones parents always look forward to adds to the pressure.
There are people who understand these pressures. Lightways Pediatric Hospice and Palliative Care Teams help the family get a break from the relentless needs of a child with a life-limiting condition. Hospice does not take the place of the parent/caregiver but is available to provide assessment of the child’s condition, work with the physician to provide pain and symptom control, and teach, support, and assist in whatever way will help to lighten the load for the child and family.
Lightways will provide support and education for your family, friends, your child’s schoolmates and teachers. Spiritual support can be provided, as well as contacting the clergy of your choice if that is your wish.
Admitting a Child to the Pediatric Hospice & Palliative Care Program
All that is needed for your child to be admitted to the hospice and palliative care program is a physician’s referral. This allows the team to provide your child and family with as many services as possible.
Care for your child includes:
- Home visits available five days/week for patients in palliative care; seven days/week/24 hours/day for patients in hospice.
- Pediatric Care service area includes the Illinois counties of Cook, DuPage, Grundy, Kane, Kankakee, Kendal, Lake, LaSalle, Livingston, McHenry and Will.
- Expertise in pediatric pain and symptom management and end of life care for infants, children and adolescents.
- Proactive approach to symptom control using the least invasive methods possible.
Lightways Pediatric Care FAQs
What is pediatric palliative care?
Pediatric Palliative Care is frequently confused with end of life or hospice care. Actually, palliative care is a resource for any child living with a serious illness and involves support for the sick child and the entire family. The goal of pediatric palliative care is to help a child live as well as possible for as long as possible.
Pediatric Palliative Care can be helpful as early as diagnosis and at any point during a child’s life with serious illness. The term “Palliative Care” refers to a wide-range of care that complements disease-directed care by addressing physical, emotional and spiritual needs of a child and family. Pediatric Palliative Care providers do not take the place of a child’s primary medical team. They work alongside a child’s family and primary treatment team and provide an extra layer of symptom management and communication support for a child and family in the home.
How is Pediatric Palliative Care different from hospice care?
Pediatric Hospice Care is a way to support and care for your child when cure for your child’s disease is no longer possible, and their life expectancy will be shortened. Hospice is a bundle of services delivered by the same interdisciplinary team as an extension of palliative care, with special attention to end of life planning and care. The mission of hospice is to maximize your child’s comfort, control of symptoms and enhance their function and quality of life.
Can my child continue with their doctors and treatment plans if they are in Palliative Care or hospice?
Children in palliative care programs continue with their same doctors, clinic visits and subspecialty care. Pediatric Palliative Care Teams work in partnership with a child’s treatment team. Palliative Care Teams can help be the ‘eyes and ears’ at home for your doctors to help keep your child’s symptoms controlled and in some cases help take care of issues before they require a clinic or emergency department visit.
Children enrolled in hospice can continue to see their regular doctors, and families often choose to have their doctor or the pediatric hospice doctor be their primary doctor. In some cases, children can also continue to pursue disease treatment while in hospice. No matter what choice you make for your child, there is always close communication between the hospice team and your child’s treatment team about how your child is doing and what they need.
If my child has hospice care, won’t that mean we are ‘giving up’?
Hospice does not replace your child’s medical care. Hospice becomes an important addition to your child’s care, and can improve their comfort, mood and energy. When children feel better, they can live better. Studies show that when symptoms are controlled and patients have their physical, emotional and spiritual needs met, they tend to live longer.
PEDIATRIC CARE: Pediatric Palliative Care | Pediatric Hospice Care | Pediatric Care | Child Life Specialists