A new paper by Lars Garten, Marcel Globisch, Kerstin von der Hude, Karin Jäkel, Kathrin Knochel, Tanja Krones, Tatjana Nicin, Franziska Offermann, Monika Schindler, Uwe Schneider, Beatrix Schubert, Thomas Strahleck and the PaluTiN Group has recently been published in Frontiers in Pediatrics, section Neonatology.
Whenever parents lose their child, it is an enormously emotionally stressful situation for the family, regardless of whether the child is a stillborn or dies later in life. The earlier this painful loss occurs, the more precious becomes every opportunity for the family to spend with their child, providing care as well as saying goodbye (1, 2).
The evidence base in pediatric palliative care is not robust and there is even more paucity of evidence with regard to peri- and neonatology. Yet, palliative care of newborns and grief counseling of families differ significantly from other pediatric palliative care situations with regard to the following aspects (3–9). In case where the diagnosis of a life-limiting disease is established prenatally palliative care and family grief counseling to commence is required before the patient is even born. The pregnant women and the father have to face crucial decisions on behalf of their child and to put into practice their parental responsibility even though they may not yet feel like parents. If the diagnosis of a life-limiting disease is established immediately after birth the complex challenges fall into a particularly sensitive period of parent-child bonding. Specifically, bonding building relationships and becoming a family are required to coincide with the beginning of the mourning process. The situation is characterized by particular psychological burden and often time pressure. Furthermore, prenatal decisions involve health issues of the mother and sometimes the twin. Due to highly dynamics of the clinical situation, neonatal palliative care primarily takes place within the inpatient setting of perinatal centers. In contrast, the focus on pediatric palliative care is at home (10). Due to these factors the newborn child often fails to secure a firm place in its individual family structure and history. For the family and society the child usually remains unreal—as if it had never existed. Since other family members often were unable to get to know the newborn, they do not know the person for whom the parents are grieving. As a result, orphaned parents are at risk of being left alone with their grief and being socially and emotionally isolated. For parents the enduring impact of the life and death of their unborn or newborn child remains to this day scarcely acknowledged up to now.
Albeit these fundamental medical and psychosocial specific issues in perinatal palliative care, up to 2016 professional caregivers in German-speaking countries could neither draw upon evidence nor consensus-based national recommendations for this unique care situation. Our recommendations for palliative care and grief counseling in peri- and neonatology are intended as information and orientation for multidisciplinary care teams and counselors who assist (expectant) parents in these exceptional situations. The purpose is to provide practical guidance and standardization in support and care of newborns in palliative care and their families. The prenatal period, the birth, as well as the time after the death of the child are explicitly included.
The present recommendations do not claim to be able to answer all questions. They rather aim at serving as an orientation, encouraging the international discussion as well as triggering continuous development. They herein refer to situations that may run a similar course, deliberately leaving room for individual adaptation, accommodating the varying needs of affected parents.
We present a short summary of the German recommendations for palliative care and grief counseling in peri- and neonatology and their development process.