| Which program
is best for me?
Hugs & Hearts Pediatric Hospice
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.
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
of care for your child.
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.
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. Pediatric Hospice 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.
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The Hugs & Hearts Pediatric Hospice Team Includes:
- Primary Care Physician
- Patient
- Parents & Family
- Pediatric Nurse
- Hospice Medical Director
- Social Worker
- Chaplain
- Certified Nurses Aide
- Pharmacist
- Volunteer
- Medical Equipment Supplier
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.
Joliet Area Community Hospice will provide support and
education for your family, friends, your child’s school
mates and teachers. Spiritual support can be provided as
well as
contacting 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 support 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.
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Hugs & Hearts 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,Kendall, southern DuPage, southwest
Cook Counties and Kankakee 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 about the Hugs & Hearts Pediatric Hospice Program
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.
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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.
Sunshine Pediatric Palliative Care Program
• Provides comprehensive and specialized care for
children and families.
•
Realizes that a child with a life threatening illness requires
special care and consideration. Children are not small adults.
•
Cares for any child who has been diagnosed with a life-threatening
illness and are undergoing curative care for their illness.
•
Encourages the physician and family to begin care early in
the course of the illness, to reap the benefits of the entire
program.
•
Uses the team approach in caring for each child and family.
•
Provides intermittent skilled nursing visits with 24 hour
on-call nurse for questions and concerns.
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The Sunshine Pediatric Palliative Care Team Includes:
• Primary Care Physician(s)
•
Patient
•
Parents & Family
•
Pediatric Medical Director
•
Pediatric Care Coordinator
•
Pediatric Nurse
•
Social Worker
•
Chaplain
The Goals of The Sunshine Pediatric Palliative Care Team Include:
• 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.
•
Assessing the need for specialized equipment, supplies, and
medications.
•
Supporting the child and family during the illness.
•
Meeting the spiritual needs of the child and family.
•
Educating the family on pain and symptom control.
•
Offer resources for further assistance when needed.
•
Work closely with child’s health care team.
•
Provide 24 hour on-call assistance for questions and concerns.
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Frequently Asked
Questions…
Who is appropriate for the Sunshine Pediatric Palliative Care Program?
Any child age 0 to 21 years old, who has been diagnosed with
an illness or condition that can be life threatening, such
as: cancer, severe genetic disorders 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, including traumatic
injury, that is considered life threatening.
When should Sunshine Pediatric Palliative Care Program care begin?
Palliative care should be initiated at the time of diagnosis.
The pediatric team will assist with controlling any pain
or symptom that may arise, as well as provide psychosocial
and spiritual care. 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 team to
assist with pain and symptom control, psychosocial and
spiritual needs.
Can my child continue to attend school?
Yes, we encourage the child and family to continue activities
(school, vacations, etc.)
to promote quality of life.
How do we get started in the Sunshine Pediatric Palliative Care Program?
A written order (referral) or physician phone call is all
that is needed to be evaluated for the Sunshine Program.
How is the Sunshine program paid for?
Private pay, insurance, donations and grants are used to fund this program. It is partially funded by a grant from the Make Your Mark foundation. No child is turned away due to inability to pay for servi ces.
For more information about the Palliative Care Program,
please call (815) 740-4104.
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Which program is best for my patient?
Hospice Program
Age 0—21 years old
Diagnosed with a life– threatening/
life limiting illness
Prognosis less than 12 months
Would benefit from pain & symptom
control
Receiving palliative treatments for comfort and quality
of life
Would benefit from psychosocial and spiritual support
Resides
in our service area*
Palliative Care Program
Age 0—21 years old
New or recent diagnosis of a life– threatening
illness
Prognosis greater than 12 months
Diagnosed with a severe
chronic debilitating disease or condition
Would benefit from
pain & symptom control
Receiving aggressive treatment
aimed at cure/remission
Would benefit from psychosocial and
spiritual support
Resides in our service area*
*Pediatric service area extends farther than the map shown
under “About Us.” Please call to see if we
serve your area.
For questions regarding appropriateness of a child for the
above programs, please call the pediatric care coordinator
at (815) 740-4104.
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