1 40 4 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 June 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 June 2021 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2021.01.125" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2021.01.125</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 Compassionate Deactivation of Pediatric Ventricular Assist Devices: A Review of 14 Cases 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 2021 Subject The topic of the resource pediatric; end-of-life; palliative; heart failure; compassionate deactivation; ventricular assist Creator An entity primarily responsible for making the resource Hollander SA; Kaufman BD; Bui C; Gregori B; Murray JM; Sacks L; Ryan KR; Ma M; Rosenthal DN; Char D Description An account of the resource CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of children supported by VADs at the end of life. METHODS: Review of cases of CD at our institution between 2011-2020. To distinguish CD from other situations where VAD support is discontinued, patients were excluded from the study if they died during resuscitation (including ECMO), experienced brain or circulatory death prior to deactivation, or experienced a non-survivable brain injury likely to result in imminent death regardless of VAD status. RESULTS: Of 24 deaths on VAD, 14 (58%) were CD. Median age was 5.7 (IQR 0.6, 11.6) years; 6 (43%) had congenital heart disease; 4 (29%) were on a device that can be used outside of the hospital. CD occurred after 40 (IQR: 26, 75) days of support; none while active transplant candidates. CD discussions were initiated by the caregiver in 6 (43%) cases, with the remainder initiated by a medical provider. Reasons for CD were multifactorial, including end-organ injury, infection, and stroke. CD occurred with endotracheal extubation and/or discontinuation of inotropes in 12 (86%) cases, and death occurred within 10 (IQR: 4, 23) minutes of CD. CONCLUSIONS: CD is the mode of death in more than half of our VAD non-survivors and is pursued for reasons primarily related to noncardiac events. Caregivers and providers both initiate CD discussions. Ventilatory and inotropic support is often withdrawn at time of CD with ensuing death. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2021.01.125" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.125</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 Bui C Char D compassionate deactivation end-of-life Gregori B Heart Failure Hollander SA Journal of Pain and Symptom Management June 2021 List Kaufman BD Ma M Murray JM Palliative Pediatric Rosenthal DN Ryan KR Sacks L Ventricular Assist 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 Backlog URL Address <a href="http://doi.org/10.1161/CIR.0b013e3182a88099" target="_blank" rel="noreferrer">http://doi.org/10.1161/CIR.0b013e3182a88099</a> <a href="http://circ.ahajournals.org/content/early/2013/09/30/CIR.0b013e3182a88099" target="_blank" rel="noreferrer">http://circ.ahajournals.org/content/early/2013/09/30/CIR.0b013e3182a88099</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 Long-term Cardiovascular Toxicity in Children, Adolescents, and Young Adults Who Receive Cancer Therapy: Pathophysiology, Course, Monitoring, Management, Prevention, and Research Directions A Scientific Statement From the American Heart Association Publisher An entity responsible for making the resource available Circulation Date A point or period of time associated with an event in the lifecycle of the resource 2013 Creator An entity primarily responsible for making the resource Lipshultz SE; Adams MJ; Colan SD; Constine LS; Herman EH; Hsu DT; Hudson MM; Kremer Leontien C; Landy DC; Miller T; Oeffinger KC; Rosenthal DN; Sable CA; Sallan SE; Singh GK; Steinberger J; Cochran TR; Wilkinson JD Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1161/CIR.0b013e3182a88099" target="_blank" rel="noreferrer">10.1161/CIR.0b013e3182a88099</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). Type The nature or genre of the resource Journal Article Description An account of the resource 2013-09 2013 Adams MJ Backlog Circulation Cochran TR Colan SD Constine LS Herman EH Hsu DT Hudson MM Journal Article Kremer Leontien C Landy DC Lipshultz SE Miller T Oeffinger KC Rosenthal DN Sable CA Sallan SE Singh GK Steinberger J Wilkinson JD 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 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 The End Of Life Experience Of Pediatric Heart Transplant Recipients 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 2017 Creator An entity primarily responsible for making the resource Hollander SA; Dykes J; Chen S; Barkoff L; Sourkes B; Cohen H; Rosenthal DN; Bernstein D; Kaufman BD Description An account of the resource CONTEXT: Despite advances in therapies, many pediatric heart transplant (Htx) recipients will die prematurely. We characterized the circumstances surrounding death in this cohort, including location of death and interventions performed in the final 24 hours. METHODS: We reviewed all patients who underwent Htx at Lucile Packard Children's Hospital, Stanford, survived hospital discharge, and subsequently died between 7/19/2007-9/13/2015. The primary outcome studied was location of death, characterized as inpatient, outpatient, or emergency department (ED). Circumstances of death (withdrawal of life-sustaining treatment, death during resuscitation, or death without resuscitation with/without DNR) and interventions performed in the last 24 hours of life were also analyzed. RESULTS: 23 patients met entry criteria. The median age at death was 12 (range: 2-20) years, and the median time between transplant and death was 2.8 (range: 0.8-11) years. Four (17%) died at home, 3 (13%) in the ED. Sixteen (70%) patients died in the hospital, 14/16 (88%) of whom died in an intensive care unit (ICU). 5/23 (22%) experienced attempted resuscitation. Interventions performed in the last 24 hours of life included intubation (74%), mechanical support (30%), and dialysis (22%). Most patients had a recent outpatient clinical encounter with normal graft function within 60 days of dying. CONCLUSIONS/LESSONS LEARNED: Death in children following Htx often occurs in the inpatient setting, particularly the ICU. Medical interventions, including attempted resuscitation, are common at the end of life. Given the difficulty in anticipating life-threatening events, earlier discussions with patients regarding end-of-life wishes are appropriate, even in those with normal graft function. 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 Barkoff L Bernstein D Chen S Cohen H Dykes J Hollander SA Journal of Pain and Symptom Management Kaufman BD March 2017 List Rosenthal DN Sourkes B 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 May 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 Compassionate Deactivation Of Ventricular Assist Devices In Pediatric Patients. Publisher An entity responsible for making the resource available The Journal Of Heart And Lung Transplantation Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Pediatrics; Expert Consensus Statement; Destination Therapy; End Of Life Care; Respiratory System; Advanced Heart-disease; Implantable Electronic Devices; Mechanical Circulatory Support; Transplantation; Mechanical Support; Cardiac & Cardiovascular Systems; United States; Patients Nearing End; Quality Of Life; Palliative Care; Surgery; Ventricular Assist; Requesting Withdrawal; Sustaining Treatment Mechanical Support; Palliative Care; Pediatrics; Quality Of Life; Ventricular Assist Creator An entity primarily responsible for making the resource Hollander SA; Axelrod DM; Bernstein D; Cohen H; Sourkes B; Reddy S; Magnus D; Rosenthal DN; Kaufman BD Description An account of the resource Despite greatly improved survival in pediatric patients with end-stage heart failure through the use of ventricular assist devices (VADs), heart failure ultimately remains a life-threatening disease with a significant symptom burden. With increased demand for donor organs, liberalizing the boundaries of case complexity, and the introduction of destination therapy in children, more children can be expected to die while on mechanical support. Despite this trend, guidelines on the ethical and pragmatic issues of compassionate deactivation of VAD support in children are strikingly absent. As VAD support for pediatric patients increases in frequency, the pediatric heart failure and palliative care communities must work toward establishing guidelines to clarify the complex issues surrounding compassionate deactivation. Patient, family and clinician attitudes must be ascertained and education regarding the psychological, legal and ethical issues should be provided. Furthermore, pediatric-specific planning documents for use before VAD implantation as well as deactivation checklists should be developed to assist with decision-making at critical points during the illness trajectory. Herein we review the relevant literature regarding compassionate deactivation with a specific focus on issues related to children. 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 Advanced Heart-disease Axelrod DM Bernstein D Cardiac & Cardiovascular Systems Cohen H Destination Therapy End Of Life Care Expert Consensus Statement Hollander SA Implantable Electronic Devices Kaufman BD Magnus D May 2016 List Mechanical Circulatory Support Mechanical Support Palliative Care Patients Nearing End Pediatrics Quality Of Life Reddy S Requesting Withdrawal Respiratory System Rosenthal DN Sourkes B Surgery Sustaining Treatment The Journal of Heart and Lung Transplantation Transplantation United States Ventricular Assist