Learn more about the Foundation's hospice campaign to support perinatal and infant hospice services.
What is perinatal and infant hospice?
Perinatal and infant hospice services provide care and support for babies and the families of babies who have been diagnosed with a condition incompatible with a normal life span. Perinatal services occupy a unique space in that continuum, providing services that begin the moment a physician determines a baby may be born with a condition that is not compatible with life. As a partner from the beginning, perinatal and infant hospice staff are there to provide support, comfort, dignity and hope. This service provides an opportunity to take a very difficult and painful situation and turn it into a peaceful, comforting, quality filled time in family’s a life.
Why do we need this program?
Community Health Network is answering the call to provide coordinated care for families who have or are expecting a child born with a diagnosis that is incompatible with life. Our network has opened the only full continuum of perinatal and infant hospice services in central Indiana providing medical, nursing, emotional, social and spiritual care from the time of diagnosis, continuing throughout the limited life of these babies and during their family’s bereavement.
How many infants are estimated to need hospice care in one year?
Each year in Indiana there are more than 650 infant deaths. The CDC estimates that the leading cause of these deaths is life limiting congenital and chromosomal anomalies.
What kind of diagnosis would qualify for services?
Some of the diagnoses incompatible with life include:
- Severe prematurity
- Chromosomal and congenital abnormalities
- Complications of pregnancy or labor and delivery
Where is the care delivered and who provides the care?
In preparation for the baby’s birth, our perinatal care team works with the family, physicians, hospital staff and others as the mother and baby’s condition warrants. If the family chooses to take their baby home, the infant hospice team works to make that possible by providing care and the necessary equipment in the baby’s home. Our multidisciplinary team includes: physicians, nurses, pharmacists, therapists, social workers and chaplains. Sometimes the baby does not live to delivery, and bereavement services are available from our caring team to offer support.
What kind of bereavement support is offered for families who experience a loss?
Our bereavement support for the family lasts for up to thirteen months after the death of the baby. We provide individual and group bereavement services that focus on grief education, discussions, handouts and creative coping skills.
Are there other infant hospice programs in our community?
Yes. What differentiates our perinatal and infant hospice program from other programs is that our care team begins support for a family at the time a baby is diagnosed with a condition that is incompatible with life. This is often during the mother’s pregnancy. No family should go through the pregnancy preparing for the birth of their baby, while at the same time preparing to say good bye, without support. Our team works to achieve the parent’s wishes with respect to their baby.
Why fundraise for hospice? Doesn’t insurance cover the cost of hospice care?
Reimbursement rates from insurance companies often do not cover the cost of perinatal services and infant hospice care. Without philanthropic support, the long-term sustainability of our hospice program is threatened. This is particularly so for infant hospice because of the intensity of services needed to support our full continuum of care. Hospice services are not covered by insurance until a baby is born. This means that our perinatal team supports the parents and the delivery team in their preparation for the often complicated birth, and that care and support often goes unfunded. With the case of our perinatal services and infant hospice continuum, support from our team can begin during the pregnancy.
What is the funding gap?
Insurance provides only a minimum daily rate for hospice care. This reimbursement is based on a minimum average need. The true need for medical, emotional, psychological, social and spiritual support is much greater, and this is especially so for families of infants with life limiting conditions. It is different for every patient and family because of the varying diagnosis and the acuteness of the patient. Gifts from donors will provide additional necessities (which insurance often regard as unneeded extras) and will ensure the compassionate hands of hospice are available to everyone in need, regardless of ability to pay.
How much money do you need to raise?
We have identified a start-up fund need to cover the funding gap for our perinatal services and infant hospice program as $50,000. Once we raise this we will transition to an endowment capacity-building phase to raise a $1 million endowment. By raising this endowment we ensure the expansion and sustainability of services in perpetuity for all levels of hospice care. Endowments are beautiful – the impact is forever.
What is an endowment? Will it only support the perinatal and infant hospice program?
The Community Health Network Foundation Hospice Endowment Fund will be a permanent, self-sustaining source of funding. Endowment assets will be invested. Each year, a portion of the value of the fund will be paid out to support the fund's purpose, and any earnings in excess of this distribution will be used to build the fund's market value. Our Hospice Endowment fund will be used to provide support for all of our hospice services in perpetuity.
How can I help?
Tell others about this important work and make your own personal gift to support this campaign. Gifts to the Community Health Network Foundation Hospice Fund and Community Health Network Foundation Hospice Endowment Fund are investments to provide family support, comfort and hope for other infants and their families. This fundraising campaign is the financial cornerstone for our infant hospice program and the core of our ability to fulfill the unmet, delicate needs of our tiniest patients and their families. Support from donors will help provide the financial resources needed to continue a full continuum of hospice care.