How do I know if hospice is the right choice for my child?
Hospice care may be appropriate if your child has been diagnosed with a life-limiting illness and if the disease runs its normal course.  Hospice addresses the physical, social and spiritual issues related to a terminal diagnosis.  It offers palliative (comfort-oriented) care for symptom management and control of pain, and neither hastens nor prolongs death.

What services can hospice provide that my child doesn't already receive?
Hospice offers services from an inter-disciplinary team, which includes a physician, pediatric nurse, social worker, chaplain, home health aide, pharmacist, child-life specialist, and volunteer.  The team works together to provide comprehensive, compassionate care and support to the child as well as his/her family.  Care occurs primarily in the home.  Medical equipment and supplies, as well as medications are provided.

If we choose hospice, does that mean we have to give up hope for a cure or treatments that may extend my child's life?
The hospice team would never expect any parent to give up hope for a cure for their child.  If treatments offering hope for cure or extension of life become available, your child can be discharged from hospice to actively pursue them.  In the meantime, the hospice team focuses on helping the child and family maintain quality of life until such treatment options are offered.

How much will hospice services cost me?
Hospice care is completely covered by Medicaid, private insurance, HMO's and other managed care organizations.  Private donations are often used to cover expenses of patients who do not have insurance coverage.

What if my child lives longer than the hospice requirement of six months?
The progression of disease in children can vary tremendously from child to child.  No one can predict when a child might die.  If your child continues to show signs of decline after six months of hospice care, and requires help with pain and symptom management, he may continue to receive hospice services.

Will my child have to give up his primary physician if he receives hospice care?
No.  The hospice team understands and respects the bond between patient and physician, and continues to work closely with your child's primary care physician to coordinate care and services.

What if my child's physician doesn't know about or talk to us about hospice?  Should we bring it up?
Although most physicians have at least some familiarity with hospice, they may not be completely aware of the services that are offered.  They may also have some fear about discussing the topic with you.  If you feel that hospice may be appropriate for your child, please initiate a conversation with your physician.  If there are additional questions about eligibility requirements or hospice services, your physician may want to contact the hospice directly for answers.

What happens if my child needs to be hospitalized?
Occasionally care does need to be provided in the hospital.  If that is the case, the hospice will help make the necessary arrangements.  Although the child may need to be discharged from hospice during his/her stay in the hospital, hospice services can be resumed once the child leaves the hospital.

How much control will I have over my child's care?
You know your child better than anyone.  The hospice team believes that it is crucial to include parents in any decision-making process.  The team and the family work closely together to develop an individualized plan of care, which is designed to meet the specific needs, hopes and goals of each patient and his/her family.  Your participation in developing that plan is essential.

How can hospice help the patient's family and friends?
Hospice recognizes the impact of a terminal prognosis on all those individuals close to the patient.  Support and counseling services are available to all members of the family and close friends.  Special consideration is given to siblings of the patient.

Do we have to sign a DNR in order for my child to be admitted to hospice care?
No.  In developing an individualized plan for your child, the hospice team will talk with you about your wishes concerning resuscitation.  The team understands that feelings about resuscitation efforts can change at any time depending on the child's status.  Hospice also recognizes that this is a very personal and private matter.  Answering your questions and providing support as you try to decide what is in your child's best interests may be the most helpful intervention the team can offer.

Will hospice be able to continue providing support if my child dies?
The hospice team has an extensive bereavement program that includes support and counseling for a minimum of eighteen months after the death of a child.  Support is provided in the way of visits, phone calls, regular letters, and referrals to outside counselors if needed.