Perinatal Hospice Information Center

The ISDH Perinatal Hospice and Palliative Care Information Center is intended to provide information about perinatal hospice and palliative care.  Perinatal hospice and palliative care services provide care and support for babies and families of babies who have been diagnosed with a condition that with reasonable certainty will result in the death of the child within not more than three months after the child’s birth.  Hospice and palliative care services provide medical, nursing, spiritual, emotional, social, and bereavement care to families experiencing consequences of a perinatal loss.

Acronyms and Definitions

Acronyms:

  • CMS:  Centers for Medicare and Medicaid Services
  • ISDH:  Indiana State Department of Health

Definitions:

  • Hospice:  A “hospice program” means a specialized form of interdisciplinary health care provided in Indiana that is designed to alleviate the physical, emotional, social, and spiritual discomforts of an individual who is experiencing the last phase of a terminal illness or disease.  Indiana Code (IC) 16-25-1.1-4(a). 
  • Lethal fetal anomaly:  “Lethal fetal anomaly” means a fetal condition diagnosed before birth that, if the pregnancy results in a live birth, will with reasonable certainty result in the death of the child not more than three (3) months after the child’s birth.  Indiana Code (IC) 16-25-4.5-2.
  • Palliative care:  “Palliative care” is patient and facility-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.  Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.  [National Hospice and Palliative Care Organization]
  • Perinatal:  “Perinatal” refers to the time before, during and immediately after the birth of a child. 
  • Perinatal hospice:  "Perinatal hospice" means the provision of comprehensive, supportive care to a pregnant woman and her family beginning with the diagnosis of a lethal fetal anomaly and continuing through the live birth and death of the woman's child as a result of the lethal fetal anomaly.  The term includes counseling and medical care provided by maternal-fetal medical specialists, obstetricians, neonatologists, anesthesia specialists, specialty nurses, clergy, social workers, and others that are focused on alleviating fear and ensuring that the woman and her family experience the life and death of the child in a comfortable and supportive environment.  Indiana Code (IC) 16-25-4.5-3. 

About Perinatal Hospice and Palliative Care

Perinatal hospice and palliative care is care and support given to families when the baby is diagnosed with a condition that will most likely be fatal either prior to birth or shortly after.  Perinatal hospice and palliative care provides medical, nursing, spiritual, emotional, social, and bereavement care to families experiencing consequences of a perinatal loss.

The following services may be available through perinatal hospice or palliative care:

  • Prenatal support – emotional, spiritual, and medical
  • Support groups for parents, sibling and others
  • Guidance in working with medical specialties
  • Childbirth education and preparation
  • Develop individualized personalized birth plans
  • Coordinate discharge from hospital
  • Assist in creating keepsakes, mementos, and treasures
  • Assist with memorial service and funerals
  • Emotional and bereavement support
  • Pain management for baby, if necessary

Forms

The Indiana General Assembly passed a statute in 2016 requiring the ISDH to develop a form certifying that a pregnant woman receiving a diagnosis that the woman’s unborn child has a lethal fetal anomaly has received information about perinatal hospice.  Indiana Code (IC) 16-25-4.5-6.

​Perinatal Hospice Brochure

The Indiana General Assembly passed a statute in 2016 requiring the ISDH to develop a Perinatal Hospice Brochure describing the care and services available from perinatal hospice.  Indiana Code (IC) 16-25-4.5-4.

Perinatal Hospice and Palliative Care Providers

Terminology

The terms “hospice” and “palliative” often refer to similar services.  A “hospice agency” is an independent entity licensed by the ISDH under Indiana Code (IC) 16-25 and certified by the Centers for Medicare and Medicaid Services (CMS).  A hospice agency is licensed and certified to provide hospice services.  Hospice services are provided for terminally ill patients who generally have a life expectancy of less than six months.  As part of their services, a hospice agency provides palliative care services. 

A palliative care provider is an entity that provides palliative care for anyone with a serious illness.  Palliative care may be provided at any age, at any stage of an illness, and may be provided along with curative treatment.  While a licensed hospice or hospital may provide palliative care services, palliative care is often provided by non-licensed clinics or centers. 

Perinatal hospice or perinatal palliative care is a specialized service provided by a few hospice or palliative care agencies focusing on the loss of an infant’s life any time from conception up to one year of age. 

Licensed Hospice Agencies 

The following is a list of licensed hospice agencies in Indiana that have indicated that they provide Perinatal Hospice Services:

Center for Hospice Care
Mishawaka and Plymouth, Indiana
Life Transition Center
Web site:  http://www.cfhcare.org/

Community Health Network
Indianapolis, Indiana
Hospice and Palliative Care Programs
Web site: https://www.ecommunity.com/services/home-care/hospice-program and https://www.ecommunity.com/services/palliative-care

Palliative Care Services 

The following is a list of health care providers in Indiana that have indicated that they provide Palliative Care Services: 

Deaconess Health Systems
The Women’s Hospital
Newburgh, Indiana
Hand in Hand Perinatal Palliative Care Program
Web site:  https://www.deaconess.com/Locations/The-Womens-Hospital/Services/Newborn-Care/Hand-in-Hand-Perinatal-Palliative-Care

Riley Hospital for Children Perinatal-Fetal Center
Indiana University Health Maternity Center
Indianapolis, Indiana
Pathways Support Program
Web site:  http://iuhealth.org/methodist/maternity/#row-42360

St. Vincent Women’s Hospital
Indianapolis, Indiana
Center for Perinatal Loss
Web site:  http://www.stvincent.org/St-Vincent-Womens/Healthcare-Services/Maternity-Services/Pregnancy-and-Infant-Loss.aspx

Hospice Agency Consumer Reports

ISDH Hospice Consumer Reports:  The ISDH provides information about licensed hospice agencies in Indiana.  The Consumer Report provides information about the hospice agency, counties served, available services, and survey history.  The Consumer Reports are located at http://www.in.gov/isdh/23432.htm

Hospice Agency Licensing and Certification

Hospice Agency Licensing and Certification:  Hospice Agencies may be state licensed and federally certified.  The ISDH serves as the state survey agency and maintains a web site on the hospice program at http://www.in.gov/isdh/20124.htm

Laws

Indiana Code 16-25-4.5 (2016):  This statute established requirements for a perinatal hospice brochure and web site. 

                IC 16-25-4.5 (2016):  Perinatal Hospice

Organizations and Resources

Center to Advance Palliative Care (CAPC):  The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious, complex illness.  Their web site provides palliative care information for people coping with serious, complex illness.  The site includes a palliative care provider director, descriptions of what palliative care does and how to get it, and an interactive questionnaire to assist you in determining whether palliative care might be appropriate for you or a loved one.  The web site is found at www.getpalliativecare.org.    

National Hospice and Palliative Care Organization:  The National Hospice and Palliative Care Organization (NHPCO) is an organization representing hospice and palliative care programs and professionals in the United States.  The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.  Their web site provides information and resources on hospice and palliative care services.  The web site is located at www.nhpco.org

PerinatalHospice.org:  This site is intended to be a clearinghouse of information about perinatal hospice and palliative care.  The site includes resources for parents and caregivers as well as an international list of programs.  The web site is located at www.perinatalhospice.org

 

Site Updated:  November 1, 2016