Introducing a lexicon of terms for paediatric palliative care.
Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Paediatrics & Child Health
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403281/" target="_blank" rel="noreferrer">PMC4403281</a>
Case 1: A primary care provider enhances family support in perinatal palliative care.
A healthy 42-year-old G10 P7 mother with seven healthy children with the same partner conceived naturally while taking prenatal folic acid supplementation. She was referred to a perinatal assessment team at a tertiary hospital following a 21-week ultrasound showing extensive lumbosacral meningomyelocele and Chiari II malformation. Serial ultrasounds documented progressive polyhydramnios, massive ventriculomegaly, poorly developed mantle, 120° kyphoscoliosis and club feet. The referring family physician and obstetrics, genetics, neonatology, neurosurgery and palliative care were involved throughout the pregnancy. The consultants’ impressions of profound neurological damage led to counselling about options for termination of pregnancy, comfort measures alone, or resuscitative care and re-evaluation after delivery. The parents hoped for a live-born infant and time to hold her while alive. Following extensive discussions with their family physician, they chose a trial of resuscitative care with immediate neonatology assessment. A scheduled Caesarean section under spinal anesthetic, preceded by ultrasound-guided ventriculocentesis to facilitate delivery, was performed at 37 weeks’ gestation. Resuscitation included intubation and administration of intravenous fluid. The neonatologist confirmed a large open lumbosacral meningomyelocele. The baby became increasingly hypoxic despite attempts to optimize ventilation and, in discussion with the parents, the neonatologist discontinued mechanical ventilation while the baby was held in her father’s arms. Death occurred at 2 h of age.
Chamberlain C; Spicer S; Curiel Kathryn daSilva
Paediatrics & Child Health
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403278/" target="_blank" rel="noreferrer">PMC4403278</a>
Lexicon of Terms in Pediatric Palliative Care
This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the use of these words in Canada in the context of care for children with chronic complex and life-threatening conditions.
Spicer S, MacDonald ME, Vadeboncoeur C, Davies D, Siden H
PedPalASCNET
2014
© PedPalASCNET
Introducing a Lexicon of Terms for Pediatric Palliative Care
PEDI Study
2015
Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Paediatrics & Child Health
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">10.1093/pch/20.3.155</a>