Purpose for the program: Parents receiving a life-limiting fetal diagnosis face many unexpected decisions when they learn of the diagnosis; continue the pregnancy or proceed with early termination, comfort care or pursue neonatal intensive care intervention, treatment options with second opinions or withdrawal of life sustaining measures. The program offers a formalized care process for families choosing to continue the pregnancy and utilize comfort cares for their newborn at the time of birth.

Proposed change:  The University of Minnesota Amplatz Children’s Hospital Perinatal Palliative Care is a family-centered, multidisciplinary program that provides a continuum of medical, emotional, psychosocial, and spiritual support through diagnosis, pregnancy, birth and death.  Throughout this process, parents are supported in creating a plan of care for their baby that is consistent with their goals and wishes.  The program goals address the National Quality Forum’s Preferred Practices for Palliative Care and support caregivers in meeting palliative care outcomes.

Implementation, outcomes and evaluation:  Historically, care for these families was heroically pulled together by a few dedicated and passionate individuals. However, as the newly established Fetal Diagnostic and Treatment Center patient volumes grew, the needs for families choosing to continue pregnancy and newborn comfort cares were expected to grow as well.  Steps to formalize the program, lead by the Advanced Practice Nurse Leader, included a literature review, interviews with leaders from established programs, development of support from hospital administration and key individuals willing to operationalize the program, and creation of a multidisciplinary education process.  The palliative care approach is enhanced by our established Pregnancy and Newborn Loss Program. Although current numbers are small, averaging 4/year from 2008-2010, eight families have been served YTD 2011.  Families comment “this was the happiest and saddest day of my life”.  Data from patient satisfaction surveys and multidisciplinary debriefings are disseminated to the health care team.   Within this supportive formalized structure, a broad health care team accommodates the individual needs and circumstances of each family in the program.

Implications for nursing practice: The Perinatal Palliative Care program offers this care model within an institution with an established pregnancy and newborn loss program and a recently established Fetal Diagnostic and Treatment Center.  Program scope, role definitions, responsibilities for maternal and neonatal medical management, program access and multidisciplinary education will be described. A detailed birth plan template, newborn comfort care orders, care conference documentation and process workflow will be displayed.

Keywords: Comfort Care, Palliative, Loss, Newborn, Life-limiting, Fetal