Journal of palliative medicine
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Although hospice emergency kits (HEKs) are provided by many home hospice agencies, little is known about their use, side effects, and perceived impact. ⋯ Findings provide promising evidence that HEKs are a feasible and well-tolerated method for achieving timely relief of emergent symptoms in home hospice patients and possibly avoiding unwanted ED visits and hospitalizations.
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Multicenter Study
Perceptions of lethal fetal abnormality among perinatal professionals and the challenges of neonatal palliative care.
After prenatal diagnosis of lethal fetal abnormality (LFA), some couples choose to continue the pregnancy rather than opt for termination of the pregnancy. This may result in the requirement for neonatal palliative care, which in France is prescribed by the Leonetti Law. These rare situations raise various questions about when and how palliative care is provided in cases of LFA. ⋯ Consistency as regards the perceived intention of care among all members of the health care team is essential to support parents facing a possible fatal outcome. Attitudes and practices at Multidisciplinary Centers for Prenatal Diagnosis need to be shaped on a national basis.
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Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. ⋯ Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research.