Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States

Abstract

This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study

“…11 The notion of perinatal palliative care has emerged in the literature over the last decade. 23 Between 40% and 85% of parents choose to continue the pregnancy when a severe fetal anomaly is diagnosed, [24][25][26][27] and involvement of a pediatric palliative care program may be associated with less-aggressive interventions at birth. 27 Factors influencing the ability of programs to provide care to this emerging population include the location of the pediatric hospital in relation to obstetrical services at the adult hospital as well as logistical challenges around registration of an adult patient (the mother) in a pediatric hospital, even for outpatient consultations.…”

O cuidado à família diante da perda neonatal: uma reflexão sob a ótica da Teoria da Complexidade

“…It is proposed that this care occurs in four ways: physical and emotional support at the time of death; clear, consistent and compassionate communication; viability of shared decision-making and family support during the mourning process. 7 Research shows the importance of developing and implementing programs that suggest protocols such as Hope and Healing 13 , Gundersen Letheran Bereavement Services, March of Dimes and Wisconsin Stillbirth Service Program, as well as Guidelines such as The Royal College of Paediatrics and Child Health (RCPCH), 14 which include interventions that help the family from birth to death, 15 as well as guidance to health professionals on the best and most respectful way of handling the newborn. 16 Acting in the daily life of the NICU requires emotional maturation and practical ability.…”

Quality predictors of parental satisfaction after birth of infants with life‐limiting conditions

“…The PPC field is relatively new, and providers face challenges with varying degrees of personal discomfort and stress as well as garnering organisational and team support . Services are delivered through a variety of models, from small community‐based support systems to large academic medical centres with formal PPC teams . Given the nuances of care delivery, formal quality measures are reported in a minority of PPC programs and funding streams are inconsistent .…”

“…Services are delivered through a variety of models, from small community‐based support systems to large academic medical centres with formal PPC teams . Given the nuances of care delivery, formal quality measures are reported in a minority of PPC programs and funding streams are inconsistent . As PPC continues to develop, the availability of quality measures is essential to optimise care, remove barriers and demonstrate the value that high‐quality palliative care can offer to patients and health systems .…”

“…Despite evidence that underscores these important parental wishes, research that describes and characterises quality indicators in relation to family‐centred PPC has yet to be described. Regardless of the location of care delivery (hospitals, community centres, hospices, home), measures should focus on items that are meaningful to families, can be implemented by providers and can improve the level of care .…”