Hospice does not mean you are giving up on your child. Hospice does not mean there is no hope. Hospice is a special kind of caring that helps you to provide the best possible care for your child in your home where your child feels safe and loved. Home is the place you have total control in the method care of your child.

Hospice care for children incorporates specific principles and values for the care of children and their families. Its goal is to enhance the quality of life for your child and family as defined by each child and family unit. Hospice 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 insures continuity and consistency of care in all settings where services are provided.

Hospice care for children 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 volunteer 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. Nursing visits are on an intermittent schedule. Services are frequently evaluated for appropriateness and effectiveness.

A children’s hospice is not somewhere “children go to die”. It is far more complex than that. It is an unfortunate fact that some children are born with life-limiting conditions, or develop one in the very early years. The doctor tells a family that their child is not expected to survive. However, predicting how long they will be with the family is very difficult. Children who are not expected to reach adulthood are appropriate for admission into the children’s hospice program.

The grieving process ensues as families deal with the loss of the healthy childhood they anticipated, 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 will 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.

Hospice will provide support and education for your family, friends, your child’s school mates and teachers. Hospice will provide spiritual support as well as contact the clergy of your choice if that is your wish. Hospice care is a gift you can give to yourself and your child.

There are people who understand these pressures. Joliet Area Hospice Pediatric Hospice Care Team helps the family get a break from the relentless attention a life-limited child needs. Hospice helps relieve distressing symptoms. 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 what ever way will help to lighten the load for the child and family.

It is suggested that a child be admitted to the hospice program early in the terminal phase of the illness. All that is needed for your child to be admitted to the hospice program, is a physician referral. This allows the hospice team to provide your child and family with as many services as possible.

Hospice does not end when a child dies, but continues to provide support to the family for a period of 13 months or more depending on the needs of the family.

The Pediatric Team Includes:

- Patient

- Pediatric Nurse

- Social Worker

- Chaplain

- Pharmacist

- Primary Care Physician

- Hospice Medical Director

- Parents & Family

- Certified Nurses Aide

- Volunteer

- Medical Equipment Supplier

Everyone works together to provide the best care possible.

Comfort care which involves pain relief and symptom control.

Quality of life issues such as making it possible for the child to attend school if able, and family the freedom to take vacations or schedule special trips to make the best of the time they have together.

Assessing the need for specialized equipment, supplies, medications needed so the child is able to remain at home.

Supporting the child and family during the illness and after the child’s death.

Meeting the spiritual needs of the child and family.

Educating the family on death and dying issues.

Offer resources for further assistance when needed.

Providing and preparing a peaceful home death surrounded by family.

Pediatric Program Amenities

We use a holistic approach including the child (body, mind, spirit), family (parents, siblings, grandparents etc.), school and those who are in any way involved with the child.

Home visits and admissions are available 7 days/week.

Pediatric care service area includes the counties of Will, Grundy, southeast Kane, Kendall, southern DuPage and southwest Cook Counties in Illinois.

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.

Management of enteral (tube feedings) therapy.

Interdisciplinary Pediatric Team

Caregivers are provided education in the care and treatment of their child by the pediatric team.

On-Call RN available 24 hours for questions concerns or crisis intervention.

Care plans are individualized for each patient & family.

Will provide an interpreter for non-english speaking family members.

Coordination of spiritual support by JACH chaplain and community clergy.

Continuity of care if your child is hospitalized by communicating with hospital health care team.

Psychosocial support provided at school when requested for your child’s peers & teachers.

Common Questions

What type of life limiting illness is appropriate for hospice care?

There are numerous illnesses/ conditions that can be life limiting, such as: cancer, severe genetic disorders, end stage diseases of an organ system (heart, lungs, kidneys, liver, etc.), neurological degenerative diseases (Battens Disease, Spinal Muscular Atrophy, etc.). In other words, any disease or condition ( includes conditions from traumatic injury) that is so serious, your child will most likely not survive to adulthood.

When should hospice care begin?

Hospice care should be initiated as soon as it is recognized that your child has a life limiting illness and the physician has determined the need for comfort care, also known as palliative care, for symptom management and pain control. This early intervention is essential to promote your child’s comfort, as well as to provide spiritual and emotional support to your child and family.

Will my child continue to see the same doctor?

Yes, your child will continue to be treated as before, with the addition of the expertise of the pediatric hospice team to assist with pain and symptom control, psychosocial and spiritual needs.

Can my child continue to attend school?

Yes, hospice encourages the child and family to continue activities (school, vacations, etc.) to promote quality of life.

Is a DNR required to be a hospice patient?

No, it is not necessary to have a DNR (Do Not Resuscitate order) in place to be in a hospice program.

How do we get started in the hospice program?

A written order (referral) or physician phone call to hospice is required to be evaluated for hospice.

Mission Statement

It is the mission of Joliet Area Community Hospice to provide comprehensive, holistic, community based support services and care for terminally ill persons, their caregivers, and loved ones, without regard to economic status, to enable the dying child to live peacefully, in comfort, and with dignity to the last moment of life.