Counseling For Personal Care Options At Neonatal End Of Life: A Quantitative And Qualitative Parent Survey Psychosocial
Neonate; Death; Memory Making
BackgroundThe death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life.MethodsParents who had suffered a perinatal or neonatal loss between 1 and 6 years before the survey in a regional level IV neonatal intensive care unit (NICU) and associated labor and delivery room were invited to participate. Parents chose between an online survey, paper survey or telephone interview. The survey included multiple choice and open ended questions.ResultsParents prefer multiple options for the personal care of their infant at the end of life. Emergent themes were need for guidance by the medical team, memory making, feeling cared for and respected by staff, and regrets related to missed opportunities.ConclusionWhile parents differ in their preferences in utilizing specific personal care options for their infant’s end of life, they share a common preference for being presented with multiple options to choose from and in being guided and supported by healthcare providers, while being afforded the opportunity to make memories with their infant by bonding with and parenting them.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0063-6) contains supplementary material, which is available to authorized users.
Shelkowitz E; Vessella SL; O'Reilly P; Tucker R; Lechner BE
Bmc Palliative Care
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).
10.1186/s12904-015-0063-6
End-of-life Care In A Regional Level Iv Neonatal Intensive Care Unit After Implementation Of A Palliative Care Initiative
Female; Health Personnel/education; Humans; Infant Newborn; Intensive Care Units Neonatal/organization & Administration; Male; Palliative Care; Practice Guidelines As Topic; Prospective Studies; Quality Of Life; Retrospective Studies; Terminal Care
OBJECTIVE:
We hypothesized that the implementation of a neonatal palliative care initiative will result in improved markers of end-of-life care.
STUDY DESIGN:
A retrospective and prospective chart review of neonatal intensive care unit deaths was performed for 24 months before, 16 months during and 24 months after the implementation of palliative care provider education and practice guidelines (n=106). Ancillary care, redirection of care, palliative medication usage and outcome meetings in the last 48 h of life and basic demographic data were compared between epochs. Parametric and nonparametric analysis was performed.
RESULT:
There was an increase in redirection of care and palliative medication usage and a decrease in variability of use of end-of-life interventions (P=0.012, 0.022 and <0.001).
CONCLUSION:
The implementation of a neonatal palliative care initiative was associated with increases in palliative interventions for neonates in their final 48 h of life, suggesting that such an initiative may enhance end-of-life care.
Samsel C; Lechner BE
Journal Of Perinatology
2014
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/10.1038/jp.2014.189" target="_blank" rel="noreferrer noopener">10.1038/jp.2014.189</a>
Seeking the best training model for difficult conversations in neonatology
Communication; Neonatology/education; Professional-patient Relations; Computer Simulation; Curriculum; Fellowships And Scholarships; Female; Humans; Infant Newborn; Male; Models Educational; Parents; Pregnancy; Terminal Care
OBJECTIVES: We hypothesize that a formal simulation curriculum prepares neonatology fellows for difficult conversations better than traditional didactics. METHODS: Single-center neonatology fellowship graduates from 1999 to 2013 were sent a retrospective web-based survey. Some had been exposed to a Difficult Conversations curriculum (simulation group), others had not (no simulation group). The simulation group participated in one workshop annually, consisting of lecture, simulation, and debriefing. Scenarios were customized to year of training. Epoch comparisons were made between the simulation and no simulation groups. RESULTS: Self-rated baseline effectiveness at discussing difficult topics was not different. The simulation group reported more supervised family meetings and feedback after fellow-led meetings. Simulations were rated very positively. The simulation group reported increased comfort levels. Strategic pause and body positioning were specific communication skills more frequently acquired in the simulation group. In both groups, the highest ranked contributors to learning were mentor observation and clinical practice. In the simulation group, simulation and debriefing outranked didactics or other experiences. CONCLUSIONS: Simulation-based workshops improve communication skills in high stakes conversations. However, they do not substitute for mentor observation and experience. Establishing a structured simulation-based difficult conversations curriculum refines vital communication skills necessary for the high stakes conversations neonatologists direct in clinical practice.
Lechner BE; Shields R; Tucker R; Bender GJ
Journal Of Perinatal Medicine
2016
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://doi.org/10.1515/jpm-2015-0110">10.1515/jpm-2015-0110</a>
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
end of life; neonatal death; neonates; palliative care; program development; rooming-in
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opportunity to spend as much time as possible with their infant in order to make memories and parent their infant. PURPOSE: The objective of the Mother Baby Comfort Care Pathway is to implement a program of family-centered care with logistically flexible care delivery, allowing mothers and their families to share as normal a postpartum care experience as possible with a focus on quality of life, memory making, and time spent together. METHODS: The program was developed with the nucleus of care coordination and provision on the Mother Baby Unit (postpartum unit), with involvement from the labor and delivery room, NICU, and other units as necessary to provide the postpartum mother, her dying infant, as well as possible additional siblings (in the case of multiple gestation), postpartum care while rooming-in. The program was rolled out with training workshops for postpartum nurses. FINDINGS: Nurses who took part in the workshops and the patient care program rated both highly. IMPLICATIONS FOR PRACTICE: The Mother Baby Comfort Care Pathway aims to offer a framework for providing multidisciplinary family-centered comfort care to newborns during the postpartum period in a compassionate, evidence-based, and individualized manner in order to maximize quality time together for families with a dying infant.
Czynski AJ; Souza M; Lechner BE
Advances in Neonatal Care
2021
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="http://doi.org/10.1097/anc.0000000000000838" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000838</a>