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
Your area hospital may be able to provide resources for perinatal hospice and community-based hospice programs in your community that may offer the support you need.
This information is shared as required by SDCL 34-23B-8. The Department does not endorse any specific perinatal hospice program.
Frequently Asked Questions
Perinatal loss is the loss of an infant’s life any time from conception up to one year of age, regardless of the reason.
Perinatal hospice and palliative care is comprehensive, supportive care given to a pregnant mother and her family, beginning with the diagnosis of a lethal fetal anomaly and continuing through the birth and resultant death of the child. Hospice and palliative care provide counseling and medical care by maternal-fetal medical specialists, obstetricians, neonatologists, anesthesia specialists, specialty nurses, clergy, social workers and others who are focused on alleviating fear and ensuring that the mother and her family experience the life and death of the child in a comfortable and supportive environment.
When a fatal diagnosis is received, you should seek support to include care planning and counseling. A perinatal hospice or palliative care provider can assist you through this difficult time. Each situation is different and is based upon the diagnosis and other medical factors. You should discuss your particular situation in depth with your physician.
Find a Perinatal Hospice or Palliative Care Provider
Most hospitals can provide resources for perinatal hospice and palliative care. Community-based hospice or palliative care programs can also offer the support you need. Medical assistance benefits may be available for prenatal care, childbirth and perinatal hospice.
Grief Support: 2-1-1 is a free and confidential service that helps South Dakotans find the local resources they need such as grief counseling and other human services. The service is available 24 hours a day, seven days a week. To reach assistance, dial 211 from a phone or visit helplinecenter.org/2-1-1-communityresources/.
Self-Reported Perinatal Hospice Programs
- Avera: Sarah Christie, RN – Embrace/Perinatal Transport Coordinator, Avera McKennan Hospital and University Health Center. Direct: 605-322-4428
- Monument Health: Michelle Sieveke, RN, MSN – Director, Home Plus Home Health and Hospice
- Office Locations:
- Monument Health Hospice Rapid City, 224 Elk Street, Rapid City, SD 57701, 605-755-7710
- Monument Health Hospice Spearfish, 931 E. Colorado Blvd, Spearfish, SD 57783, 605-644-4444
- Office Locations:
- Sanford Health: Dr. Daniel Mark, MD or Pam Koepsell, APRN, CNS, 605-312-3938
- PRISM/Pediatric Palliative Care
- Ava’s House – Sanford’s intergenerational Hospice House including infants and children
- Sanford SHARE Chapter: nationalshare.org/
- Sanford Health Ava’s House, intergenerational hospice house including infants and children. Sioux Falls, South Dakota, (605) 404-4800
Click here for a list of perinatal hospice programs in surrounding states.
Laws
On March 9, 2021, Senate Bill 83, an Act to require the provision of information regarding perinatal hospice, was signed into law by Governor Noem. SDCL 34-23B-8 required the South Dakota Department of Health (SD DOH) to provide links to organizations providing perinatal hospice and palliative care resources and services as well as a list of perinatal hospice and palliative care providers in South Dakota and surrounding states.
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.