1 40 9 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 January 2025 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 List 2024 URL Address <a href="http://doi.org/10.3390/children11080967" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11080967</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 The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study Publisher An entity responsible for making the resource available Children Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource health care planning; palliative therapy; Likert scale; adult; advance care planning; article; caregiver support; child; clinical article; clinical decision making; cross-sectional study; family centered care; female; follow up; health care personnel; hospitalization; human; illness trajectory; interpersonal communication; male; mobile application; mortality; perception; person centered care; questionnaire; semi structured interview; shared decision making; terminal care; thematic analysis Creator An entity primarily responsible for making the resource Joren CY; Aris-Meijer JL; Kremer LCM; Hofman SC; Rippen-Wagner H; Slingerland-Blom R; van der Velden C; Schuiling-Otten MA; Verhagen AAE; Kars MC Description An account of the resource Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. <br/>Method(s): This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. <br/>Result(s): Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. <br/>Conclusion(s): Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice.<br/>Copyright &#xa9; 2024 by the authors. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3390/children11080967" target="_blank" rel="noreferrer noopener">10.3390/children11080967</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). 2024 Adult Advance Care Planning Aris-Meijer JL Article Caregiver Support Child Children Clinical Article Clinical Decision Making Cross-sectional Study Family Centered Care Female Follow Up Health Care Personnel health care planning Hofman SC Hospitalization Human illness trajectory Interpersonal Communication Joren CY Kars MC Kremer LCM Likert scale Male mobile application Mortality November List 2024 Palliative Therapy Perception person centered care Questionnaire Rippen-Wagner H Schuiling-Otten MA Semi Structured Interview shared decision making Slingerland-Blom R Terminal Care Thematic Analysis van der Velden C Verhagen AAE 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 September 2024 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 September List 2024 URL Address <a href="http://doi.org/10.1038/s41390-024-03367-1" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1038/s41390-024-03367-1</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 Utility of do-not-resuscitate orders for critically ill infants in the NICU Publisher An entity responsible for making the resource available Pediatric Research Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource pediatric intensive care unit; infant; gestational age; terminal care; medical staff; newborn intensive care; nurse; critically ill patient; neonatal intensive care unit; clinical decision making; neonatologist; medical record review; human; article; adult; diagnosis; surgery; fear; do not resuscitate order Creator An entity primarily responsible for making the resource Adams SY; Redford K; Li R; Malfa A; Tucker R; Lechner BE Description An account of the resource Objective: To better understand the value of DNR orders for critically ill infants in the NICU. Methods: A prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period and surveys of their neonatologists, neonatal fellows, and nurses. Results: 40 infants died during the study period and 120 staff surveys were completed. Infants with DNR orders were of a higher gestational age at birth and a higher chronological age at death. Nurses were more likely to perceive benefit from DNR orders than physicians. Medical staff recollection of the existence of DNR orders was not always accurate. Time and fear of adding unnecessary emotional burden to parents were identified as barriers to DNR order implementation. An advanced care planning model built on open communication instead of DNR order documentation was deemed the best approach. Conclusion: Though DNR orders are beneficial for a subset of infants, DNR orders are likely not applicable for all infants who die in the NICU. More important is supportive, individualized communication between families and the medical team to ensure quality end-of-life care. Impact: In the adult and pediatric ICU literature, DNR orders are associated with improved qualitative "good death" assessments and decreased familial decision regret. In the NICU, rates of DNR usage aren't well reported and their overall utility is unclear. Though DNR orders can help guide clinical decision making in the NICU and may be associated with higher quality ethical discussion, our data suggest that they are not applicable in all patient cases. We hope that this work will help guide approaches to end-of-life care in the NICU and underscore the importance of frequent, open communication between families and their medical team. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1038/s41390-024-03367-1" target="_blank" rel="noreferrer noopener">10.1038/s41390-024-03367-1</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). 2024 Adams SY Adult Article Clinical Decision Making Critically Ill Patient Diagnosis do not resuscitate order Fear Gestational Age Human Infant Lechner BE Li R Malfa A Medical Record Review Medical Staff Neonatal Intensive Care Unit Neonatologist Newborn Intensive Care Nurse Pediatric Intensive Care Unit Pediatric Research Redford K September List 2024 Surgery Terminal Care Tucker 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 August 2024 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 August List 2024 URL Address <a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0043-1768488</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 Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit Publisher An entity responsible for making the resource available American Journal of Perinatology Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource tracheostomy; quality of life; infant; gestational age; social support; newborn; bleeding; infection; caregiver; terminal care; central nervous system; follow up; respiratory failure; brain damage; Human immunodeficiency virus; cross-sectional study; health care personnel; neonatal intensive care unit; acquired immune deficiency syndrome; clinical decision making; human; article; child; adult; advance care planning; death; medical care; end of life; kidney failure; cerebrospinal fluid drainage system; climate change; multiple organ failure Creator An entity primarily responsible for making the resource Lin M; Williams D; Vitcov G; Sayeed S; Decourcey DD; Wolfe J; Cummings C Description An account of the resource Objective: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). Study design: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. Results: A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. Conclusion: ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. Key points: · ACP is associated with improved parent-reported end-of-life outcomes.. · Parents conceptualize end-of-life care outcomes in nuanced ways.. · Families should have the opportunity to participate in ACP discussions that meet their unique needs. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</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). 2024 acquired immune deficiency syndrome Adult Advance Care Planning American Journal of Perinatology Article August List 2024 bleeding Brain Damage Caregiver Central Nervous System cerebrospinal fluid drainage system Child climate change Clinical Decision Making Cross-sectional Study Cummings C Death DeCourcey DD End Of Life Follow Up Gestational Age Health Care Personnel Human Human Immunodeficiency Virus Infant infection Kidney Failure Lin M Medical Care multiple organ failure Neonatal Intensive Care Unit Newborn Quality Of Life respiratory failure Sayeed S Social Support Terminal Care Tracheostomy Vitcov G Williams D Wolfe J 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 2020 Oncology 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 Oncology 2020 List URL Address <a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1002/cncr.32553</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 Unrealistic parental expectations for cure in poor-prognosis childhood cancer Publisher An entity responsible for making the resource available Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource child; human; patient care; controlled study; female; major clinical study; male; cohort analysis; article; priority journal; childhood cancer; cancer recurrence; quality of life; confidence interval; cancer palliative therapy; interpersonal communication; expectation; clinical decision making; parental behavior; prospective study; cancer prognosis; neuroblastoma; questionnaire; medical record; pediatric patient; cancer risk; theoretical model; high risk population; odds ratio Creator An entity primarily responsible for making the resource Mack J W; Cronin A M; Uno H; Shusterman S; Twist C J; Bagatell R; Rosenberg A; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J; Cohn S L; Levine A; Taddei S; Diller L R Description An account of the resource Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">10.1002/cncr.32553</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). 2020 Article Bagatell R Baker J N Cancer Cancer Palliative Therapy Cancer Prognosis Cancer Recurrence cancer risk Child Childhood Cancer Clinical Decision Making Cohn S L Cohort Analysis confidence interval Controlled Study Cronin A M Diller L R Expectation Female Glade Bender J Granger M M High Risk Population Human Interpersonal Communication Levine A Mack J W Major Clinical Study Male Marachelian A Medical Record Neuroblastoma Odds Ratio Oncology 2020 List parental behavior Park J Patient Care pediatric patient Priority Journal Prospective Study Quality Of Life Questionnaire Rosenberg A Shusterman S Taddei S theoretical model Twist C J Uno H 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 2019 Oncology 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 Oncology 2019 List URL Address <a href="http://doi.org/10.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1007/s00520-018-4100-x</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 Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records Publisher An entity responsible for making the resource available Supportive Care in Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2707 Subject The topic of the resource adolescent; article; cancer mortality; cancer palliative therapy; central nervous system tumor/th [Therapy]; child; childhood cancer/th [Therapy]; clinical decision making; diagnosis related group; female; human; leukemia/th [Therapy]; major clinical study; male; medical record; priority journal; retrospective study; Switzerland; treatment duration Creator An entity primarily responsible for making the resource Rost M; Acheson E; Kuhne T; Ansari M; Pacurari N; Brazzola P; Niggli F; Elger B S; Wangmo T Description An account of the resource Purpose: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4100-x</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). 2707 Acheson E Adolescent Ansari M Article Brazzola P Cancer Mortality Cancer Palliative Therapy central nervous system tumor/th [Therapy] Child childhood cancer/th [Therapy] Clinical Decision Making diagnosis related group Elger B S Female Human Kuhne T leukemia/th [Therapy] Major Clinical Study Male Medical Record Niggli F Oncology 2019 List Pacurari N Priority Journal Retrospective Study Rost M Supportive Care In Cancer Switzerland treatment duration Wangmo T 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 December 2019 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 December 2019 List URL Address <a href="http://doi.org/10.1136/bmjspcare-2019-001909" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1136/bmjspcare-2019-001909</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 Artificial nutrition and hydration for children and young people towards end of life: consensus guidelines across four specialist paediatric palliative care centres Publisher An entity responsible for making the resource available BMJ Supportive and Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource article; artificial feeding; child; clinical decision making; drug withdrawal; female; human; hydration; male; multidisciplinary team; palliative therapy; systematic review; terminal care Creator An entity primarily responsible for making the resource Anderson AK; Burke K; Bendle L; Koh M; McCulloch R; Breen M Description An account of the resource There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmjspcare-2019-001909" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001909</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). 2019 Anderson AK Article Artificial Feeding Bendle L BMJ Supportive and Palliative Care Breen M Burke K Child Clinical Decision Making December 2019 List Drug Withdrawal Female Human Hydration Koh M Male McCulloch R Multidisciplinary team Palliative Therapy Systematic Review Terminal 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 May 2019 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 May 2019 List URL Address <a href="http://doi.org/10.1080/17518423.2018.1461946" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/17518423.2018.1461946</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 Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities Publisher An entity responsible for making the resource available Developmental Neurorehabilitation Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource human; terminal care; female; male; palliative therapy; emergency ward; major clinical study; resuscitation; article; adult; patient care; intensive care; health care access; priority journal; follow up; risk factor; physician attitude; personal experience; cross-sectional study; tracheostomy; disability; spinal muscular atrophy; Likert scale; clinical decision making; childhood disease/ep [Epidemiology]; neurologic disease/ep [Epidemiology]; noninvasive ventilation; patient comfort; pediatric rehabilitation; profound intellectual and multiple disability; rehabilitation center; risk; Swiss Creator An entity primarily responsible for making the resource Wosinski B; Newman C J Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1080/17518423.2018.1461946" target="_blank" rel="noreferrer noopener">10.1080/17518423.2018.1461946</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). Description An account of the resource Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations. 2019 Adult Article childhood disease/ep [Epidemiology] Clinical Decision Making Cross-sectional Study Developmental Neurorehabilitation Disability Emergency Ward Female Follow Up Health Care Access Human Intensive Care Likert scale Major Clinical Study Male May 2019 List neurologic disease/ep [Epidemiology] Newman C J Noninvasive Ventilation Palliative Therapy Patient Care Patient Comfort Pediatric Rehabilitation Personal Experience Physician Attitude Priority Journal profound intellectual and multiple disability rehabilitation center Resuscitation Risk risk factor Spinal Muscular Atrophy Swiss Terminal Care Tracheostomy Wosinski B 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 January 2018 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 January 2018 List URL Address n/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 Palliative care in neonatal period and ethical issues Publisher An entity responsible for making the resource available Anestezi Dergisi Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource medical ethics; newborn care; palliative therapy; clinical decision making; communication skill; ethical decision making; family attitude; History; Human; morality; Newborn; newborn period; nurse attitude; Perinatal Care; physician attitude; review; Terminal Care Creator An entity primarily responsible for making the resource Turkcapar AF Description An account of the resource Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited, various barriers to provide palliative care were identified ranging from ethical, moral and attitudinal of physicians, nurses and families. These problems can be solved with providing for the education and training needs of physicians, GPs and nurses in aspects of palliative care, decision making in end-of-life situations, and communication skills. Identifier An unambiguous reference to the resource within a given context n/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). 2017 Anestezi Dergisi Clinical Decision Making Communication Skill Ethical Decision Making Family Attitude History Human January 2018 List Medical Ethics Morality Newborn Newborn Care newborn period nurse attitude Palliative Therapy Perinatal Care Physician Attitude Review Terminal Care Turkcapar AF 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 2017 List URL Address <a href="http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905</a> Notes <p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171905. Date of Publication: September 2017</p> 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 Guidance on forgoing life-sustaining medical treatment Publisher An entity responsible for making the resource available Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis Creator An entity primarily responsible for making the resource Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP Description An account of the resource Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT. Identifier An unambiguous reference to the resource within a given context <a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</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). 2017 Apparent Life Threatening Event/th [therapy] Article Awareness Boss RD Caregiver Carter BS Child Abuse Child Care Christian CW Clinical Decision Making Comatose Patient Consensus Consultation Critical Illness/th [therapy] Davies D Death Death By Neurologic Criteria Dell ML Developmental Disorder/th [therapy] Diekema DS Disease Burden Disease Course Elster N Ethical Decision Making Extremely Low Gestational Age Family Decision Making Family Stress Feudtner C Flaherty EG Fortson BL Foster Care Gavril AR Gestational Age Goal Attainment Guinn-Jones M Hauer JM Health Belief High Risk Population Human Humphrey LM Hurley TP Hydration Idzerda SM Imaizumi S Imminent Death Informed Consent Intensive Care Interpersonal Communication Katz AL Klick J Klipstein S Laskey A Laventhal N Legal Aspect Legano LA Leventhal JM Life-sustaining Medical Treatment Linebarger JS Lord B MacAuley RC MacMillan H Medical Ethics Medical Expert Medical Information Medical Procedures Medical Specialist Medically Administered Nutrition And Hydration Moon MR Neglect Neurologic Disease/di [diagnosis] November 2017 List Nutrition Okun AL Opel DJ Oxygenation Pain/th [therapy] Palliative Therapy Parker S Patient Care Planning Pediatrician Pediatrics Practice Guideline Priority Journal Prognosis Quality Of Life Resuscitation Rivera F shared decision making Social Support Spiritual Care Statter MB Stedt E Survival Teamwork Terminal Care Tissue Perfusion Uncertain Prognosis Weise KL