Perinatal Palliative Care

The featured article from the current ANS issue is titled “Quality Indicators and Parental Satisfaction With Perinatal Palliative Care in the Intrapartum Setting After Diagnosis of a Life-Limiting Fetal Condition” by Charlotte Wool, PhD, RN; Beth Perry Black, PhD, RN; and Anne B. (Nancy) Woods, PhD, RN.  The article is available for download at no cost on the ANS website while it is featured!  Dr. Wool provided this background about her work:

Dr. Wool began her doctoral studies in 2009 with a program of research in perinatal palliative care (PPC), an interdisciplinary approach to services for parents who opt to continue a pregnancy after learning of life-limiting fetal condition (LLFC). Her early work was a  multiphase study to devise and test an instrument that filled a gap in understanding clinician attitudes and practice barriers to providing perinatal palliative care (PPC). The Perinatal Palliative Care Perception and Barriers Scale is a clinician-level instrument in use or in translation worldwide.

More recently, Dr. Wool developed a parent-level instrument in order to create the foundation for future work in quality metrics. The palliative care sector is dedicated to ensuring the highest quality of care is given to all dying patients. The aim of this quality initiative is to eventually enable benchmarking in the field. The development of the instrument Parental Satisfaction and Quality Indicators Scale included 405 participants.  This instrument has generated a great deal of interest and is currently in translation in Chili, Japan, and Portugal and in use at Harvard Medical School.

ANS recently published the results from parents’ reports of care during their labor and birth experience, known as the intrapartum period. Parents who have their medical needs addressed have higher odds of being satisfied with their care. Psychosocially, parents also yearn for the health care providers to treat their baby with respect and dignity, in spite of their life-limiting condition. Families who experience such tragic loss need clinicians who come alongside them and help shoulder the burden and provide resources for healing.

Dissemination of Instruments

Purple stars: Perinatal Palliative Care Perception and Barriers Scale

Red stars: Parental Satisfaction and Quality Indicators Instrument