Abstract
Purpose: Implementation of a comprehensive perinatal hospice program at a large academic medical center.|Background: In 2017 the Nebraska Unicameral passed Legislative Bill 506; Compassion and Care for Medically Challenging Pregnancies Act; to provide duties for the State Child and Maternal Death Review Team. This bill requires physicians to inform patients, whose infants are diagnosed with a life-limiting anomaly, of the option of perinatal hospice and requires the Department of Health and Human Services to provide an up-to-date information sheet containing contact information for perinatal hospice programs within the state. Studies suggest that families enrolled in perinatal hospice programs are better prepared for the birth of their child and have increased satisfaction with their experience during the life of their child. This large academic medical center is currently listed on the registry as having a hospice program but did not have a formal program in place.|Methods: Project interventions were developed based upon current literature and were adopted and implemented with feedback by the stakeholders. The process began with formation of an interdisciplinary team including Neonatology, Neonatal Nurse Practitioner, Maternal Fetal Medicine, Palliative Care, Social Work, Child Life Specialist, respiratory therapist, care coordinator, geneticist, chaplain, labor and delivery nurses and NICU nurses. Next, processes were developed including: a referral process from the maternal fetal medicine clinic, a process for coordinating perinatal hospice conferences between the family and interdisciplinary team; development of documentation describing birth plan, a plan for ongoing communication amongst the team and all involved in care, and follow-up with the family throughout and after the process. Education for nursing and the interdisciplinary team occurred. Electronic record documentation and order set were prepared. A parent questionnaire which assessed for patient satisfaction was developed to be administered to parents after the experience as well as a parent bereavement follow-up process; which includes phone calls at 1 month, 6 months and 1 year. Lastly, referral and data were to be collected on a monthly basis.|Results: Although, the Perinatal Hospice program has been implemented and accepting referrals, it has yet to receive any due to the reluctance of the Maternal Fetal Medicine team to consult us without a lethal diagnosis.|Discussion: There was a great need for a perinatal hospice program at this large academic medical center, however the referral to the perinatal hospice program needs to be consistent by all providers. Future research could evaluate the parent's experience long term, the hospice teams experience and the effectiveness of the referral process. Future data collection might include an assessment of who would have qualified for the program but was not referred. The language of "hospice" tends to be a deterrent for referral, ultimately antenatal palliative care might be a better approach in which these conferences could be occurring with families who have premature rupture of membranes or delivery at viability. This facility has had an increase in infants with Trisomy 13 and 18 deliveries and however, with improved quality of life, these infants are being transferred to another facility for cardiac surgery.