When a woman becomes pregnant, she undergoes a series of tests to evaluate fetal well being. With the advancement of antenatal testing, potentially life-threatening diagnoses can be discovered very early in the pregnancy. Some families choose to continue the pregnancy to term knowing that their newborn baby may survive for minutes, hours, days or months. For most parents, expecting a new baby is a time filled with happiness, anticipation and hope for the future. However, for parents who have been told that their baby may die at birth or shortly after, it is a time filled with heartbreak and uncertainty. In response to an unmet need in our community, a partnership between the hospital and the hospice program was formed to provide specialized perinatal hospice care to meet the unique needs of these extraordinary families.
The St. Joseph Perinatal Comfort Care Program (PCC) is an innovative approach to providing interdisciplinary care to parents who are pregnant with a baby who has a diagnosis that is incompatible with life. This program has extended the hospice philosophy across the lifespan to include the care of families anticipating a perinatal loss. In many hospitals, at the time of the birth, these infants are separated from their families and taken to the NICU, often times for futile care. This program allows families to spend every moment with their baby from the time of birth to the impending death. This is family-centered care at its finest.
The PCC team consists of physicians, nurses, social workers, music therapists, chaplains and volunteers who collaborate to provide comprehensive care to families from the time of diagnosis, during the pregnancy, labor and delivery and through bereavement. In the outpatient setting, home visits are made by the perinatal hospice team to provide support, education and prepare the parents for the birth and potential death of their baby. A comprehensive Birthing Plan is created and advance planning takes place to make sure that the parent’s wishes are honored. A Family Conference takes place prior to the mother's admission to the hospital. This is a time for the family and their support system to meet with the entire team to review the Birthing Plan, ask important questions and tour the unit. During the labor, delivery and postpartum care, the inpatient perinatal hospice team provides compassionate palliative care and honors the Birthing Plan that has been created by the parents. Comfort Care Orders have been developed to provide palliative care options for the baby during the hospitalization and discharge home if necessary. Bereavement support provided in partnership with the hospice and hospital continues for one year following the death of the infant. The collaborative care between the outpatient hospice team and the inpatient hospital team allows for a seamless delivery of family-centered care across the continuum.