1
40
5
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Primary Palliative Care In The Neonatal Intensive Care Setting: What Is Possible? What Is Necessary?
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
English N; Ferrell B; Marc-Aurele K
Description
An account of the resource
Objectives
Reflect on current neonatal intensive care practice
for the seriously ill and or dying neonate.
Explore the role of the primary palliative care
clinician.
Discuss palliative educational goals for intensive
care clinicians.
Introduction: This session will be an interactive discussion
with presenters (parent, palliative care nurse scientist/educator/author/neonatologist/palliative
care
pediatric nurse consultant). Our assumption is that
primary palliative care is integral to the life-supporting
care of neonates and their families on admission to
the neonatal intensive care unit (NICU).
Background: In keeping with the recommendations of
the 2014 Institute of Medicine’s Dying in America
report, primary palliative care must be included in
the basic curriculum for every clinician who cares for
patients with advanced or serious illness. Clinicians
practicing in the NICU fall squarely in this category
as demonstrated by the life-supporting measures
required by sick newborns while addressing the vulnerable
traumatized emotional state of parents, especially
mothers. Few parents are able to grasp the enormity of
the situations they are now facing.
Two-thirds of infant deaths (birth-1 year) occur in the
neonatal period (birth-28 days). Other neonates
remain with a significant degree of prognostic uncertainty,
hovering between life and death for weeks or
months. If an infant dies, parents are often unprepared
and, in turn, the intensive care team is unprepared
to respond to the intense suffering of parents.
Facilitated discussion: (Questions for discussion
will be addressed as time allows.)
What is the role of a primary palliative care clinician
practicing in an intensive care setting?
Are there core primary palliative care educational
outcomes that are specific to any intensive care
settings?
Is the implementation of a primary palliative curriculum
a possibility in the current intensive care
environment?
Summary: Session facilitators will summarize the discussion
points and share with attendees via e-mail if requested.
Identifier
An unambiguous reference to the resource within a given context
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.151
Rights
Information about rights held in and over the resource
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).
2016
English N
Ferrell B
Journal of Pain and Symptom Management
Marc-Aurele K
March 2016 List
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Primary Palliative Care In Neonatal Intensive Care
Publisher
An entity responsible for making the resource available
Seminars In Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Consultative; Neonatal; Nicu; Perinatal; Primary Palliative Care
Creator
An entity primarily responsible for making the resource
Marc-Aurele K; English N
Identifier
An unambiguous reference to the resource within a given context
10.1053/j.semperi.2016.11.005
Rights
Information about rights held in and over the resource
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).
2017
April 2017 List
Consultative
English N
Marc-Aurele K
Neonatal
Nicu
Perinatal
Primary Palliative Care
Seminars in Perinatology
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2021 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0173" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0173</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Retrospective Pediatric Telepalliative Care Experience
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatrics; pediatric palliative care; telehealth; telemedicine; telepalliative care
Creator
An entity primarily responsible for making the resource
Schmitt S; Ebby C; Doshi A; Bower K; Marc-Aurele K
Description
An account of the resource
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0173" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0173</a>
Rights
Information about rights held in and over the resource
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).
2021
Bower K
Doshi A
Ebby C
Journal of Palliative Medicine
Marc-Aurele K
November 2021 List
Pediatric Palliative Care
Pediatrics
Schmitt S
Telehealth
Telemedicine
telepalliative care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0307" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0307</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Impact of Home-Based Pediatric Palliative Care on Hospital and Emergency Department Utilization at a Single Institution
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
ED utilization; Emergency department; Home-based care; Hospital; Hospital utilization; Pediatric palliative care
Creator
An entity primarily responsible for making the resource
Bower KA; Lau M; Short R; Lawrence S; Beauchamp-Walters J; Marc-Aurele K
Description
An account of the resource
Background: There is limited data on home-based pediatric palliative care (PPC) demographics and utilization outcomes. Objective(s): Describe who receives home-based PPC and compare emergency department visits, hospital admissions, and hospital days admitted in the one year before and after initiation of home-based PPC. Design(s): Exploratory retrospective medical chart review. Settings/Subjects: Patients, from birth to their 21st birthday, who received home-based PPC during January 1, 2015 to July 31, 2016 at a single site. Measurements: Demographics and hospital utilization were extracted from the medical chart. Result(s): N = 154. Comparing one year before and after initiation of home-based PPC, the median number of hospitalizations decreased from 2 to 1 (p < 0.001), and the median total number of hospital days admitted decreased from 16 to 4 days (p < 0.001). Conclusion(s): Children enrolled in a home-based PPC program experienced a significant decrease in the number of hospital admissions and hospital days admitted. © Copyright 2022, Mary Ann Liebert, Inc., publishers 2022.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0307" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0307</a>
2022
April 2022 List
Beauchamp-Walters J
Bower KA
ED utilization
Emergency Department
Home-based Care
Hospital
Hospital Utilization
Journal of Palliative Medicine
Lau M
Lawrence S
Marc-Aurele K
Pediatric Palliative Care
Short R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
October 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.06.015">http://doi.org/10.1016/j.jpainsymman.2022.06.015</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Electronic health record; Home care; Pediatric palliative care; Quality improvement; Symptom management
Creator
An entity primarily responsible for making the resource
Larrow A; Doshi A; Fisher E; Patel A; Marc-Aurele K; Rhee KE; Beauchamp-Walters J
Description
An account of the resource
Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked confidence to manage symptoms at home and had difficulty in recalling or accessing "sick care plans." Our team developed the Symptom Management Plan (SMP), a multi-system "sick care plan," as a quality improvement project with the aim of improving caregiver confidence to manage symptoms at home. An Electronic Health Record-based SMP template was created for common symptoms: respiratory distress, seizures, feeding intolerance, and constipation with core subspecialists' input. Individualized SMPs were created and reviewed with caregivers at every subsequent palliative home nursing visit. Caregivers were surveyed on their confidence 3 and 6-months post-implementation. Resource utilization was analyzed throughout implementation. At 6 months, 73% of caregivers reported "better" or "much better" confidence in managing their child's symptoms after using the SMP, and 76% of caregivers perceived the SMP prevented urgent care or emergency department (ED) visits. After the SMP was launched, the rate of ED visits decreased from 0.86 to 0.47 per 100 patient-days, and admissions decreased from 0.56 to 0.39 per 100 patient-days. These rates further decreased to 0.31 ED visits and 0.19 admissions per 100 patient-days within 4 and 6 months. Introducing the SMP for our home-based palliative care patients was associated with improved caregiver confidence in managing acute symptoms at home and a reduction in hospital utilization.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.06.015">10.1016/j.jpainsymman.2022.06.015</a>
Rights
Information about rights held in and over the resource
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).
2022
Beauchamp-Walters J
Doshi A
electronic health record
Fisher E
Home Care
Journal of Pain and Symptom Management
Larrow A
Marc-Aurele K
October 2022 List
Patel A
Pediatric Palliative Care
Quality Improvement
Rhee KE
Symptom Management