1 40 32 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 March 2023 List 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). 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 List 2023 URL Address <a href="http://doi.org/10.1097/njh.0000000000000923" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/njh.0000000000000923</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 Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations Publisher An entity responsible for making the resource available Journal of Hospice and Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource Palliative Care; Quality of Life; Advance Directives; Child; Communication; Human; Parents; Patient Care Planning; United States Creator An entity primarily responsible for making the resource Grier K; Koch A; Docherty S Description An account of the resource The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality of life, end of life) with an understanding of the multilayered external influences that affect patient/parent decision making. A 5-layer model is presented that describes facilitators to conversations about quality goals of care and advance directives. Each year, complex health conditions (a) affect approximately 500 000 children in the United States, 8600 of whom meet current palliative care criteria, and (b) account for over 7 million child deaths globally. Nurses can use knowledge of the unique values and culture of families with children who have complex health conditions to support them by providing high quality, ongoing goals-of-care conversations, especially if their access to pediatric palliative care is limited. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/njh.0000000000000923" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000923</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). 2023 Advance Directives Child Communication Docherty S Grier K Human Journal of Hospice and Palliative Care Koch A March List 2023 Palliative Care Parents Patient Care Planning Quality Of Life United States 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 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 June 2022 List URL Address <a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1542/peds.2021-054796</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 An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial 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 2022 Subject The topic of the resource Advance Care Planning; Advance Directives; Confidence Intervals; End of Life; Odds Ratio; United States Creator An entity primarily responsible for making the resource Baker JN; Friebert S; Needle J; Jiang J; Wang J; Lyon ME Description An account of the resource BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHOD(S): Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULT(S): Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSION(S): High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences. Copyright © 2022 by the American Academy of Pediatrics. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2021-054796" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-054796</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 Advance Care Planning Advance Directives April 2022 List Baker JN Confidence Intervals End Of Life Friebert S Jiang J Lyon ME Needle J Odds Ratio Pediatrics United States Wang 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 January 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 January 2022 List URL Address <a href="http://doi.org/10.1089/jpm.2021.0183" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1089/jpm.2021.0183</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 How to Open the Door: A Qualitative, Observational Study on Initiating Advance Care Discussions with Parents in Pediatric Palliative Care 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; advance directives; advance care discussions; communication strategies; pediatric advance care planning Creator An entity primarily responsible for making the resource Daxer M; Monz A; Hein K; Heitkamp N; Knochel K; Borasio GD; Führer M Description An account of the resource Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging situation for all participants. Objectives: Our goal was to investigate the first step of ACD and identify its challenges and helpful communication strategies to develop a conversation guide for initiating the pACP process and structure the conversational opening. Methods: We performed a participant observation of 11 initial ACD and 24 interviews with 13 HCPs and 20 parents of 11 children cared for by 3 different palliative care teams in southern Germany. Qualitative data collection was supplemented by a questionnaire. Content analysis and conversation analysis were used for evaluation. Results: Parents and HCPs start the process with different expectations, which can lead to misunderstandings and confusion. HCPs gain parental cooperation when they express the purpose of the meeting clearly and early, provide structure and guidance, and give parents time to talk about their experiences and feelings. Addressing dying and death is hard for both sides and requires a sensitive approach. Conclusions: Initiating ACD is extremely challenging for all participants. HCPs and parents should clarify expectations and aims at the beginning of the conversation. Future research should focus on how HCPs can be trained for this task and how the right timing for introducing ACD to families can be identified. Clinical Trial Registration number 049-12. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jpm.2021.0183" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0183</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 advance care discussions Advance Directives Borasio GD Communication strategies Daxer M Führer M Hein K Heitkamp N January 2022 List Journal of Palliative Medicine Knochel K Monz A pediatric advance care planning Pediatrics 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 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 December 2021 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2021.09.013" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2021.09.013</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 Participatory development of a modular advance care planning program in pediatric palliative care (MAPPS) 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 Advance care planning; advance directives; decision-making; end-of-life; palliative care; pediatric Creator An entity primarily responsible for making the resource Knochel K; Zaimovic V; Gatzweiler B; Hein KK; Heitkamp N; Monz A; Reimann D; Borasio GD; Führer M Description An account of the resource CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals. METHODS: Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analysed, systematized and translated these results into a pedACP program draft, which was revised by the participants. RESULTS: The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility. CONCLUSION: Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2021.09.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.09.013</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 Advance Care Planning Advance Directives Borasio GD December 2021 List Decision-making end-of-life Führer M Gatzweiler B Hein KK Heitkamp N Journal of Pain and Symptom Management Knochel K Monz A Palliative Care Pediatric Reimann D Zaimovic V 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 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 October 2021 List URL Address <a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1097/NJH.0000000000000786</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 Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature Publisher An entity responsible for making the resource available Journal of Hospice and Palliative Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource adolescents and young adults; advance directives; goals of care; neuromuscular disease; palliative care Creator An entity primarily responsible for making the resource Battista V; Baker DJ; Trimarchi T; Sabri B; D'Aoust RF; Wright R Description An account of the resource The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced health outcomes, yet it is not routinely offered to adolescents/young adults living with neuromuscular disease. An integrative review of the literature was conducted to examine the evidence related to the use of advance directives with adolescents/young adults living with neuromuscular disease and to identify reasons why they are not being used and how this can be improved. Three-hundred-seven studies were retrieved from PubMed, CINAHL, and EMBASE. Five studies met the final inclusion search criteria and were included in the analysis. Four themes emerged from the literature: conversations about advance directives with adolescents/young adults with neuromuscular disease are not being conducted, only a small number of patients have documented advance directives, patients want to have conversations about goals of care and want to have them sooner, and there is a lack of evidence in this area. These findings may influence neuromuscular clinicians' practice surrounding the use of advance directives and increase their knowledge regarding the need for discussions regarding goals of care. Copyright © 2021 by The Hospice and Palliative Nurses Association. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000786</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 adolescents and young adults Advance Directives Baker DJ Battista V D'Aoust RF Goals Of Care Journal of Hospice and Palliative Nursing Neuromuscular Disease October 2021 List Palliative Care Sabri B Trimarchi T Wright 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 April 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 April 2019 List URL Address <a href="http://doi.org/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1177/1049909118785891</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 Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients Publisher An entity responsible for making the resource available American journal of hospice & palliative care Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource Spirituality; advance care planning; Terminal Care/psychology; Middle Aged; Male; Young Adult; Humans; Adult; Female; Decision Making; Attitude of Health Personnel; Religion; advance directives; hospital-specific palliative care issues; spirituality; religion; Health Personnel/psychology; Advance Care Planning/statistics & numerical data; attitude of health personnel; Clergy/psychology; living wills; Living Wills/psychology/statistics & numerical data; physician patient communication Creator An entity primarily responsible for making the resource Bowman M; St Cyr S; Stolf I A Description An account of the resource OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation. RESULTS:: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. CONCLUSIONS:: Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">10.1177/1049909118785891</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). 2018 Adult Advance Care Planning Advance Care Planning/statistics & Numerical Data Advance Directives American journal of hospice & palliative care April 2019 List Attitude Of Health Personnel Bowman M Clergy/psychology Decision Making Female Health Personnel/psychology hospital-specific palliative care issues Humans Living Wills Living Wills/psychology/statistics & numerical data Male Middle Aged physician patient communication Religion Spirituality St Cyr S Stolf I A Terminal Care/psychology Young Adult 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/10.1111/cch.12020" target="_blank" rel="noreferrer">http://doi.org/10.1111/cch.12020</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 Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records Publisher An entity responsible for making the resource available Child: Care, Health And Development Date A point or period of time associated with an event in the lifecycle of the resource 2014 Subject The topic of the resource Child; Female; Humans; Male; Advance Directives; Physician-Patient Relations; Pediatrics; Practice Guidelines as Topic; Communication; Resuscitation Orders; Time Factors; quality of life; end of life; adolescent; Preschool; decision making; infant; retrospective studies; DNAR; Parents; documentation; Parents/px [Psychology]; Terminal Care; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; review; Medical Records; Neoplasms; advance planning; child and family wishes; Neoplasms/mo [Mortality]; Patient Care Planning/st [Standards]; Terminal Care/px [Psychology] Creator An entity primarily responsible for making the resource Beringer AJ; Heckford EJ Description An account of the resource BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's palliative care standards, across a range of children's healthcare services and to assess the impact on practice of written guidelines to support EoL care planning. METHOD: A manual retrospective review of healthcare records using a purpose-built form. Inclusion criteria were the records of children with a diagnosed life-limiting or life-threatening condition, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services. The sample was 114 sets of notes relating to a cohort of 48 children: 24 girls and 24 boys, the majority of whose deaths were cancer related. RESULTS: Examples of good practice were found in the records of individual services. Services had each developed their own systems and documents to support EoL care planning rather than using a unified documentation system. Where documented practice fell short, this was related to a lack of evidence that choice in location of death had been offered, delays in sharing of information between services, and information being buried in the narrative of the notes, making it difficult to find. CONCLUSIONS: Current documented EoL planning varies between services. Those who are infrequently involved in the provision of EoL care may benefit from support by those for whom this is part of their daily working life. These professionals can help prepare staff to engage families in these difficult but important conversations - and encourage them to document them in a way that can be easily and readily accessed and shared. 2014-03 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/cch.12020" target="_blank" rel="noreferrer">10.1111/cch.12020</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 2014 Adolescent Advance Directives advance planning Backlog Beringer AJ Child child and family wishes Child: Care, Health and Development Communication Decision Making DNAR Documentation End Of Life Female Heckford EJ Humans Infant Journal Article Male Medical Records Neoplasms Neoplasms/mo [mortality] Parents Parents/px [psychology] Patient Care Planning/og [Organization & Administration] Patient Care Planning/st [Standards] Pediatrics Physician-patient Relations Practice Guidelines As Topic Preschool Quality Of Life Resuscitation Orders Retrospective Studies Review Terminal Care Terminal Care/og [organization & Administration] Terminal Care/px [psychology] Time Factors 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/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3124</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 Pediatric advance directives: parents' knowledge, experience, and preferences 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 2014 Subject The topic of the resource Child; Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Logistic Models; Prospective Studies; Health Services Needs and Demand; Socioeconomic Factors; end of life; adolescent; Preschool; infant; advance care planning; DNAR; Parents; Parents/px [Psychology]; Advance Directives; Hispanic Americans/sn [Statistics & Numerical Data]; Advance Directives/px [Psychology]; decision making; Attitude; Chronic disease; special-needs children Creator An entity primarily responsible for making the resource Liberman DB; Pham PK; Nager AL Description An account of the resource OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS: The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care. 2014-08 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</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 2014 Adolescent Adult Advance Care Planning Advance Directives Advance Directives/px [Psychology] Attitude Attitude To Health Backlog Child Chronic Disease Cross-sectional Studies Decision Making DNAR End Of Life Female Health Services Needs And Demand Hispanic Americans/sn [Statistics & Numerical Data] Humans Infant Journal Article Liberman DB Logistic Models Male Nager AL Palliative Care Parents Parents/px [psychology] Pediatrics Pham PK Preschool Prospective Studies Socioeconomic Factors Special-needs Children 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/10.1542/peds.2014-1903" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2014-1903</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 Talking with parents about end-of-life decisions for their children 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 2015 Subject The topic of the resource adolescent; Child; Female; Humans; infant; Male; Intensive Care Units; Palliative Care; Advance Directives; decision making; Pediatrics; Withholding Treatment; Prospective Studies; Professional-Family Relations; Communication; Life Support Care; Netherlands; Qualitative Research; Pediatric; adolescent; Preschool; decision making; infant; Newborn; DNAR; Professional-Family Relations; Pediatrics; Advance Directives; Communication Creator An entity primarily responsible for making the resource de Vos MA; Bos AP; Plötz FB; van Heerde M; de Graaff Bert M; Tates K; Truog RD; Willems DL Description An account of the resource BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer. 2015-02 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2014-1903" target="_blank" rel="noreferrer">10.1542/peds.2014-1903</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 2015 Adolescent Advance Directives Backlog Bos AP Child Communication de Graaff Bert M de Vos MA Decision Making DNAR Female Humans Infant Intensive Care Units Journal Article Life Support Care Male Netherlands Newborn Palliative Care Pediatric Pediatrics Plötz FB Preschool Professional-family Relations Prospective Studies Qualitative Research Tates K Truog RD van Heerde M Willems DL Withholding Treatment 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/10.1177/0269216308094336" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216308094336</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 Role of advance directives in palliative care units: a prospective study. Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2008 Subject The topic of the resource Female; Humans; Male; Prospective Studies; Physician's Role; Patient Satisfaction; advance care planning; DNAR; Attitude to Death; Palliative Care; DNAR Outcomes; Neoplasms/th [Therapy]; decision making; Advance Directives; Terminally Ill/px [Psychology] Creator An entity primarily responsible for making the resource Pautex S; Herrmann FR; Zulian GB Description An account of the resource Advance directives (ADs) might be useful in achieving improved communication and satisfaction with decision making at the end-of-life. Our aims were to better characterise patients with advanced oncological disease who decided to complete ADs and to measure the effect of ADs completion on the satisfaction level with end-of-life care from both patients and their relatives. A prospective study was conducted in three palliative care units. Patients with advanced cancer were included if they met the following criteria: an estimated life expectancy of <6 months, fluency in French, Mini Mental State Examination >20 and not yet completed ADs. All the patients received information about ADs and decided whether to complete ADs or not. The level of satisfaction with involvement in the decision process concerning end-of-life care was assessed by means of a written questionnaire. In all, 53 of 228 patients were included, and 12 decided to complete ADs. Patients who completed ADs had statistically less depression one week after inclusion (P = 0.030), had a lower anxiety score on the second week and had a lower depression score on the third week. There was a trend towards a higher satisfaction level with the involvement of the patients in end-of-life care for those completing ADs (P = 0.878). In conclusion, each patient with an advanced progressive disease should be informed about ADs and be encouraged to complete the ADs with the aim to ease many fears as well as to improve communication. 2008 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0269216308094336" target="_blank" rel="noreferrer">10.1177/0269216308094336</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 2008 Advance Care Planning Advance Directives Attitude To Death Backlog Decision Making DNAR DNAR Outcomes Female Herrmann FR Humans Journal Article Male Neoplasms/th [therapy] Palliative Care Palliative Medicine Patient Satisfaction Pautex S Physician's Role Prospective Studies Terminally Ill/px [Psychology] Zulian GB 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/10.1200/jco.2009.24.6397" target="_blank" rel="noreferrer">http://doi.org/10.1200/jco.2009.24.6397</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 Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. Publisher An entity responsible for making the resource available Journal Of Clinical Oncology Date A point or period of time associated with an event in the lifecycle of the resource 2010 Subject The topic of the resource Female; Humans; Male; Young Adult; Palliative Care; Terminal Care; Family; Adult; Interviews as Topic; Aged; Middle Aged; Physicians; Medical Oncology; 80 and over; advance care planning; DNAR; Advance Directives; Physician-Patient Relations; Patient Preference; Neoplasms/px [Psychology] Creator An entity primarily responsible for making the resource Dow LA; Matsuyama RK; Ramakrishnan V; Kuhn L; Lamont EB; Lyckholm L; Smith TJ Description An account of the resource PURPOSE: Many seriously ill patients with cancer do not discuss prognosis or advance directives (ADs), which may lead to inappropriate and/or unwanted aggressive care at the end of life. Ten years ago, patients with cancer said they would not like to discuss ADs with their oncologist but would be willing to discuss them with an admitting physician. We assessed whether this point of view still held., PATIENTS AND METHODS: Semi-structured interviews were conducted with 75 consecutively admitted patients with cancer in the cancer inpatient service., RESULTS: Of those enrolled, 41% (31 of 75) had an AD. Nearly all (87%, 65 of 75) thought it acceptable to discuss ADs with the admitting physician with whom they had no prior relationship, and 95% (62 of 65) thought that discussing AD issues was very or somewhat important. Only 7% (5 of 75) had discussed ADs with their oncologist, and only 23% (16 of 70) would like to discuss ADs with their oncologist. When specifically asked which physician they would choose, 48% (36 of 75) of patients would prefer their oncologist, and 35% (26 of 75) would prefer their primary care physician., CONCLUSION: Fewer than half of seriously ill patients with cancer admitted to an oncology service have an AD. Only 23% (16 of 70) would like to discuss their ADs with their oncologist but nearly all supported a policy of discussing ADs with their admitting physician. However, fully 48% (36 of 75) actually preferred to discuss advance directives with their oncologist if AD discussion was necessary. We must educate patients on why communicating their ADs is beneficial and train primary care physicians, house staff, hospitalists, and oncologists to initiate these difficult discussions. 2010 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1200/jco.2009.24.6397" target="_blank" rel="noreferrer">10.1200/jco.2009.24.6397</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 2010 80 And Over Adult Advance Care Planning Advance Directives Aged Backlog DNAR Dow LA Family Female Humans Interviews As Topic Journal Article Journal Of Clinical Oncology Kuhn L Lamont EB Lyckholm L Male Matsuyama RK Medical Oncology Middle Aged Neoplasms/px [psychology] Palliative Care Patient Preference Physician-patient Relations Physicians Ramakrishnan V Smith TJ Terminal Care Young Adult 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/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2009-0621</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 Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. 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 2009 Subject The topic of the resource Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology] Creator An entity primarily responsible for making the resource Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F Description An account of the resource OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS. 2009 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</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 2009 Adolescent Advance Directives Assisted/px [Psychology] Attitude To Death Backlog Benoit Y Bilsen J Bomans A Child De Wilde J Decision Making Deliens L DNAR Euthanasia Euthanasia/px [Psychology] Female Humans Informed Consent/px [Psychology] Interview Journal Article Male Minors/px [Psychology] Mortier F Neoplasms/px [psychology] Netherlands Palliative Care/px [psychology] Passive Pediatrics Pousset G Psychological Right to Die Sick Role Suicide Survivors/px [psychology] Terminal Care/px [psychology] Truth Disclosure Verlooy J 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/10.1542/peds.2010-0420" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2010-0420</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 Alterations in end-of-life support in the pediatric intensive care unit. 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 2010 Subject The topic of the resource Child; Humans; Advance Directives; Withholding Treatment; Life Support Care; Resuscitation Orders; Brain Death; Pediatric; DNAR; Intensive Care Units; Terminal Care Creator An entity primarily responsible for making the resource Lee KJ; Tieves K; Scanlon MC Description An account of the resource OBJECTIVE: Our purpose was to examine alterations in end-of-life support in a multiinstitutional sample of PICUs., METHODS: This was a retrospective, descriptive study. Variables collected included end-of-life support category, race, length of stay, operative status, reason for admission, and Pediatric Index of Mortality 2 score, as well as the number of ICU beds and the presence of trainees., RESULTS: There were 1745 deaths at 35 institutions between January 1, 2004, and September 30, 2005. Of those, 1263 had complete data and were analyzed. The end-of-life support category distribution was as follows: brain death, 296 (23%); do not resuscitate, 205 (16%); limitation of support, 36 (3%); withdrawal of support, 579 (46%); no limitation, 124 (10%); no advance directives, 23 (2%). For further analyses, end-of-life support categories were grouped as limitation (ie, do not resuscitate, limitation of support, or withdrawal of support) versus no limitation (ie, no limitation or no advance directive). Brain death was not included in further analyses. The majority of deaths were in the limitation group (n=820 [85%]), and 12 (40%) of 30 institutions had 100% of deaths in this group. There were significant differences between institutions (P<.001). Decisions for limitation were seen less frequently in the black race (112 [76%] of 147 deaths; P=.037) and in institutions with no trainees (56 [69%] of 81 deaths; P<.001)., CONCLUSIONS: Decisions to limit support are common. Black race and an absence of trainees are associated with decreased frequency of limitation decisions. 2010 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2010-0420" target="_blank" rel="noreferrer">10.1542/peds.2010-0420</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 2010 Advance Directives Backlog Brain Death Child DNAR Humans Intensive Care Units Journal Article Lee KJ Life Support Care Pediatric Pediatrics Resuscitation Orders Scanlon MC Terminal Care Tieves K Withholding Treatment 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/10.7326/0003-4819-148-5-200803040-00020" target="_blank" rel="noreferrer">http://doi.org/10.7326/0003-4819-148-5-200803040-00020</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 Can't we improve on advance directives?. Publisher An entity responsible for making the resource available Annals Of Internal Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2008 Subject The topic of the resource Humans; Family; Medical Records; decision making; DNAR; documentation; Advance Directives; Advance Care Planning/st [Standards]; Palliative Care/st [Standards]; Patients/px [Psychology] Creator An entity primarily responsible for making the resource Brasic GM; Hammes BJ Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.7326/0003-4819-148-5-200803040-00020" target="_blank" rel="noreferrer">10.7326/0003-4819-148-5-200803040-00020</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 2008 2008 Advance Care Planning/st [Standards] Advance Directives Annals Of Internal Medicine Backlog Brasic GM Decision Making DNAR Documentation Family Hammes BJ Humans Journal Article Medical Records Palliative Care/st [standards] Patients/px [psychology] 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/10.1136/adc.2009.160051" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.2009.160051</a> <a href="http://adc.bmj.com/content/95/2/79.short" target="_blank" rel="noreferrer">http://adc.bmj.com/content/95/2/79.short</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 Advanced care planning in children with life-limiting conditions – the Wishes Document Publisher An entity responsible for making the resource available Archives Of Disease In Childhood Date A point or period of time associated with an event in the lifecycle of the resource 2010 Subject The topic of the resource Child; Humans; Young Adult; Advance Directives; Great Britain; Health Policy; Prognosis; adolescent; Preschool; infant; DNAR; Patient Care Planning/og [Organization & Administration]; Terminal Care/og [Organization & Administration] Creator An entity primarily responsible for making the resource Fraser J; Harris N; Berringer AJ; Prescott H; Finlay F Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/adc.2009.160051" target="_blank" rel="noreferrer">10.1136/adc.2009.160051</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 2010-02 2010 Adolescent Advance Directives Archives of Disease in Childhood Backlog Berringer AJ Child DNAR Finlay F Fraser J Great Britain Harris N Health Policy Humans Infant Journal Article Patient Care Planning/og [Organization & Administration] Preschool Prescott H Prognosis Terminal Care/og [organization & Administration] Young Adult 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/10.1016/j.resuscitation.2008.08.009" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.resuscitation.2008.08.009</a> <a href="http://www.sciencedirect.com/science/article/pii/S0300957208006588" target="_blank" rel="noreferrer">http://www.sciencedirect.com/science/article/pii/S0300957208006588</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 ‘Do Not Attempt Resuscitation’ – Do Standardised Order Forms make a clinical difference above hand-written note entries? Publisher An entity responsible for making the resource available Resuscitation Date A point or period of time associated with an event in the lifecycle of the resource 2009 Subject The topic of the resource Advance Directives; cardiopulmonary resuscitation; DNAR; DNAR Outcomes; Patient Selection; Routine data Creator An entity primarily responsible for making the resource Lewis KE; Edwards VM; Hall S; Temblett P; Hutchings H Description An account of the resource SummaryAim To quantify any effect of Standardised Order Forms (SOFs), versus hand-written note entries for ‘Do Not Attempt Resuscitation’ – on the selection and survival of remaining cardiopulmonary resuscitation (CPR) attempts. Methods A prospective, observational study in two UK Hospitals, comparing numbers, demographics and survival rates from CPR attempts for 2 years prior to and 2 years after the introduction of SOFs (the only change in DNAR policy). Results There were 133 CPR attempts, representing 0.30% of the 44,792 admissions, pre SOFs and 147 CPR attempts representing 0.32% of the 45,340 admissions following the SOFs (p = 0.46). The median duration of a CPR attempt was 11 min prior to and 15 min following the SOFs (p = 0.02). Of the CPR attempts, there was no change in mean age (p = 0.34), proportions occurring outside working hours (p = 0.70) or proportions presenting with an initial shockable rhythm (p = 0.30). Survival to discharge following CPR was unchanged (p = 0.23). Conclusions The introduction of SOFs for DNAR orders was associated with a significantly longer duration of CPR (on average by 3–4 min) but no difference in overall number, demographics or type of arrest or survival in the remaining CPR attempts. 2009-01 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.resuscitation.2008.08.009" target="_blank" rel="noreferrer">10.1016/j.resuscitation.2008.08.009</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 2009 Advance Directives Backlog Cardiopulmonary Resuscitation DNAR DNAR Outcomes Edwards VM Hall S Hutchings H Journal Article Lewis KE Patient Selection Resuscitation Routine data Temblett P 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/10.1056/NEJMsb052907" target="_blank" rel="noreferrer">http://doi.org/10.1056/NEJMsb052907</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 Appropriate use of artificial nutrition and hydration--fundamental principles and recommendations Publisher An entity responsible for making the resource available The New England Journal Of Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2005 Subject The topic of the resource Humans; United States; Palliative Care; Advance Directives; Ethics; Third-Party Consent; Patient Rights; Clinical; Life Support Care/ethics; Nutritional Support/adverse effects/ethics; Withholding Treatment/ethics Creator An entity primarily responsible for making the resource Casarett D; Kapo J; Caplan A Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1056/NEJMsb052907" target="_blank" rel="noreferrer">10.1056/NEJMsb052907</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 2005 2005 Advance Directives Backlog Caplan A Casarett D Clinical Ethics Humans Journal Article Kapo J Life Support Care/ethics Nutritional Support/adverse effects/ethics Palliative Care Patient Rights The New England Journal Of Medicine Third-Party Consent United States Withholding Treatment/ethics 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/10.6004/jnccn.2006.0069" target="_blank" rel="noreferrer">http://doi.org/10.6004/jnccn.2006.0069</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 Integrating POLST into palliative care guidelines: a paradigm shift in advance care planning in oncology. Publisher An entity responsible for making the resource available Journal Of The National Comprehensive Cancer Network Date A point or period of time associated with an event in the lifecycle of the resource 2006 Subject The topic of the resource Humans; decision making; advance care planning; DNAR; Palliative Care; Medical Oncology; Advance Directives; Neoplasms/px [Psychology]; Neoplasms/th [Therapy]; Physician's Practice Patterns/og [Organization & Administration]; Life Support Care/st [Standards] Creator An entity primarily responsible for making the resource Bomba Patricia A; Vermilyea D Description An account of the resource Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is an essential process that should begin at the time of diagnosis, if not already initiated, to ensure that all patient and family rights are preserved. Communicating effectively with the patient and family and having the patient designate a surrogate decision-maker are critical. Attention must be paid to resolving conflicts among patient values and preferences and those of family and the health care team. Patient-centered goals for care and expectations should be elicited at first assessment and reassessed frequently as conditions change. As a disease progresses, advance directives are rarely precise enough to predict all possible scenarios and outline guidance for care. Therefore, for patients with advanced metastatic cancer and a potential life expectancy of less than 1 year, converting patient-centered treatment goals into actionable medical orders while the patient maintains capacity is a more effective way to ensure that patient preferences are honored. Physician Orders for Life-Sustaining Treatment (POLST) and similar medical order forms provide explicit direction about resuscitation status ("code status") if the patient is pulseless and apneic. POLST also includes directions about additional interventions the patient may or may not want. A decade of research in Oregon has proved that the POLST Paradigm Program more accurately conveys end-of-life preferences that are more likely to be followed by medical professionals than traditional advance directives alone. 2006 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.6004/jnccn.2006.0069" target="_blank" rel="noreferrer">10.6004/jnccn.2006.0069</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 2006 Advance Care Planning Advance Directives Backlog Bomba Patricia A Decision Making DNAR Humans Journal Article Journal Of The National Comprehensive Cancer Network Life Support Care/st [Standards] Medical Oncology Neoplasms/px [psychology] Neoplasms/th [therapy] Palliative Care Physician's Practice Patterns/og [Organization & Administration] Vermilyea D 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/10.1001/jama.284.1.87" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.284.1.87</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 Hospital care of patients with dementia. Publisher An entity responsible for making the resource available Jama Date A point or period of time associated with an event in the lifecycle of the resource 2000 Subject The topic of the resource Hospitalization; Humans; Palliative Care; Advance Directives; Prognosis; Acute Disease; Double Effect Principle; advance care planning; Dementia/co [Complications]; Dementia/mo [Mortality]; Hip Fractures/co [Complications]; Hip Fractures/th [Therapy]; Patient Care; Pneumonia/co [Complications]; Pneumonia/th [Therapy]; DNAR Creator An entity primarily responsible for making the resource Riesenberg D Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jama.284.1.87" target="_blank" rel="noreferrer">10.1001/jama.284.1.87</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 2000 2000 Acute Disease Advance Care Planning Advance Directives Backlog Dementia/co [Complications] Dementia/mo [Mortality] DNAR Double Effect Principle Hip Fractures/co [Complications] Hip Fractures/th [Therapy] Hospitalization Humans JAMA Journal Article Palliative Care Patient Care Pneumonia/co [Complications] Pneumonia/th [Therapy] Prognosis Riesenberg D 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/10.1016/s0140-6736(05)62952-2" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0140-6736(05)62952-2</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 Care for dying patients. Publisher An entity responsible for making the resource available Lancet Date A point or period of time associated with an event in the lifecycle of the resource 1997 Subject The topic of the resource Humans; Palliative Care; Advance Directives; Physician-Patient Relations; Family; Euthanasia; Communication; Physicians; decision making; advance care planning; DNAR; Withholding Treatment; Terminal Care; Passive Creator An entity primarily responsible for making the resource Emanuel EJ Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/s0140-6736(05)62952-2" target="_blank" rel="noreferrer">10.1016/s0140-6736(05)62952-2</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 1997 1997 Advance Care Planning Advance Directives Backlog Communication Decision Making DNAR Emanuel EJ Euthanasia Family Humans Journal Article Lancet Palliative Care Passive Physician-patient Relations Physicians Terminal Care Withholding Treatment 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/10.1016/s0749-0690(05)70016-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0749-0690(05)70016-1</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 Physician-older patient communication at the end of life. Publisher An entity responsible for making the resource available Clinics In Geriatric Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2000 Subject The topic of the resource Female; Humans; Male; Aged; Communication; Patient Participation; Truth Disclosure; Time Factors; Advance Directive Adherence; advance care planning; DNAR; Attitude to Death; Advance Directives; Physician-Patient Relations; Terminal Care/mt [Methods]; Empirical Research; Palliative Care/mt [Methods] Creator An entity primarily responsible for making the resource Siegler EL; Levin BW Description An account of the resource Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews the literature about communication with older patients at the end of life, focusing on physician-patient discussions, decision-making, advance directives, and cultural factors. The article concludes with a practical discussion of problems that physicians may encounter when working with older patients at the end of life and their families and recommendations to improve communication. 2000 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/s0749-0690(05)70016-1" target="_blank" rel="noreferrer">10.1016/s0749-0690(05)70016-1</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). Type The nature or genre of the resource Journal Article 2000 Advance Care Planning Advance Directive Adherence Advance Directives Aged Attitude To Death Backlog Clinics In Geriatric Medicine Communication DNAR Empirical Research Female Humans Journal Article Levin BW Male Palliative Care/mt [methods] Patient Participation Physician-patient Relations Siegler EL Terminal Care/mt [methods] Time Factors Truth Disclosure 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/10.1046/j.1440-1754.1999.00351.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1440-1754.1999.00351.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 The role of palliative care in advanced muscular dystrophy and spinal muscular atrophy. Publisher An entity responsible for making the resource available Journal Of Paediatrics And Child Health Date A point or period of time associated with an event in the lifecycle of the resource 1999 Subject The topic of the resource Child; Female; Humans; Male; Advance Directives; Adult; Respiration; Continuity of Patient Care; adolescent; bereavement; social support; DNAR; Nuclear Family; Artificial; Parents/px [Psychology]; Palliative Care/og [Organization & Administration]; Muscular Atrophy; Muscular Dystrophies/th [Therapy]; Needs Assessment; Terminal Care/st [Standards]; South Australia; Spinal/th [Therapy] Creator An entity primarily responsible for making the resource Parker D; Maddocks I; Stern LM Description An account of the resource OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families., METHODOLOGY: Semistructured interviews were conducted in South Australia with nine bereaved and four current family members of individuals with muscular dystrophy or spinal muscular atrophy. Issues explored during interview included: (i) the family perceptions of the difficulties in caring; (ii) the psychological and physical resources which were available to assist them; and (iii) family recall of the management of the terminal phase of the illness., RESULTS: Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives., CONCLUSIONS: The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home. 1999 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1046/j.1440-1754.1999.00351.x" target="_blank" rel="noreferrer">10.1046/j.1440-1754.1999.00351.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). Type The nature or genre of the resource Journal Article 1999 Adolescent Adult Advance Directives Artificial Backlog Bereavement Child Continuity Of Patient Care DNAR Female Humans Journal Article Journal of Paediatrics and Child Health Maddocks I Male Muscular Atrophy Muscular Dystrophies/th [Therapy] Needs Assessment Nuclear Family Palliative Care/og [Organization & Administration] Parents/px [psychology] Parker D Respiration Social Support South Australia Spinal/th [Therapy] Stern LM Terminal Care/st [standards] 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/10.1542/peds.103.4.826" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.103.4.826</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 directives in a pediatric emergency department. 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 1999 Subject The topic of the resource Child; Humans; Program Evaluation; Hospitals; Wisconsin; Emergency Service; Pediatric; DNAR; Resuscitation Orders; Hospital; Advance Directives; Emergency Medical Services Creator An entity primarily responsible for making the resource Walsh-Kelly CM; Lang KR; Chevako J; Blank EL; Korom N; Kirk K; Gray A Description An account of the resource Parents of children with terminal illnesses are not always present when a life-threatening event occurs. For many of these children, an advance directive specifying alternate code orders has been written by the parent or legal guardian (hereafter the use of parent is to be interpreted as parent/legal guardian) and the patient's attending physician. Implementing a pediatric advanced directive presents significant problems for emergency personnel if the parent is not present to identify the existence of the directive and interpret the contents in the context of the current medical crisis. 1999 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.103.4.826" target="_blank" rel="noreferrer">10.1542/peds.103.4.826</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 1999 Advance Directives Backlog Blank EL Chevako J Child DNAR Emergency Medical Services Emergency Service Gray A Hospital Hospitals Humans Journal Article Kirk K Korom N Lang KR Pediatric Pediatrics Program Evaluation Resuscitation Orders Walsh-Kelly CM Wisconsin 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/10.1016/j.jpainsymman.2011.01.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2011.01.002</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 An advance directive in two questions. 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 2011 Subject The topic of the resource Female; Humans; Palliative Care; Aged; Resuscitation Orders; Fatal Outcome; DNAR; Pain/et [Etiology]; Advance Directives; Health care reform; Living Wills; Meningitis/et [Etiology]; Pain Management; Pancreatic Neoplasms/co [Complications]; Pancreatic Neoplasms/pa [Pathology]; Pancreatic Neoplasms/th [Therapy] Creator An entity primarily responsible for making the resource Mahon MM Description An account of the resource It has been two decades since advance directives have become an integral part of health care. Impediments to their optimal usage are common and multifactorial. Decisions commonly have to be made when patients are unable to do so or choose not to participate in decision making, often at the end of life. The use of two questions, 1) "If you cannot, or choose not to participate in health care decisions, with whom should we speak?" and 2) "If you cannot, or choose not to participate in decision making, what should we consider when making decisions about your care?," may accomplish the major goals of an advance directive.Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2011.01.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.01.002</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 2011 Advance Directives Aged Backlog DNAR Fatal Outcome Female Health Care Reform Humans Journal Article Journal of Pain and Symptom Management Living Wills Mahon MM Meningitis/et [Etiology] Pain Management Pain/et [Etiology] Palliative Care Pancreatic Neoplasms/co [Complications] Pancreatic Neoplasms/pa [Pathology] Pancreatic Neoplasms/th [Therapy] Resuscitation Orders 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/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1467-8519.2011.01939.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 End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making. Publisher An entity responsible for making the resource available Bioethics Date A point or period of time associated with an event in the lifecycle of the resource 2011 Subject The topic of the resource Child; Humans; United States; Palliative Care; Advance Directives; Adult; Canada; Deep Sedation; Withholding Treatment; Aged; Euthanasia; Europe; Suicide; decision making; Active; DNAR; Assisted/lj [Legislation & Jurisprudence]; Terminal Care; Voluntary; Bioethical Issues; Public Opinion Creator An entity primarily responsible for making the resource Schuklenk U; van Delden JJM; Downie Jocelyn; McLean SAM; Upshur R; Weinstock D Description An account of the resource This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.Copyright © 2011 Blackwell Publishing Ltd. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/j.1467-8519.2011.01939.x" target="_blank" rel="noreferrer">10.1111/j.1467-8519.2011.01939.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). Type The nature or genre of the resource Journal Article 2011 Active Adult Advance Directives Aged Assisted/lj [Legislation & Jurisprudence] Backlog Bioethical Issues Bioethics Canada Child Decision Making Deep Sedation DNAR Downie Jocelyn Europe Euthanasia Humans Journal Article McLean SAM Palliative Care Public Opinion Schuklenk U Suicide Terminal Care United States Upshur R van Delden JJM Voluntary Weinstock D Withholding Treatment 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/10.4065/mcp.2010.0747" target="_blank" rel="noreferrer">http://doi.org/10.4065/mcp.2010.0747</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 medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Publisher An entity responsible for making the resource available Mayo Clinic Proceedings Date A point or period of time associated with an event in the lifecycle of the resource 2011 Subject The topic of the resource Female; Humans; Male; Family; Withholding Treatment; Aged; Middle Aged; Interdisciplinary Communication; Severity of Illness Index; patient care team; decision making; retrospective studies; advance care planning; DNAR; quality of life; DNAR Outcomes; referral and consultation; Advance Directives; Palliative Care/mt [Methods]; Heart Failure/th [Therapy]; Heart-Assist Devices; Left/th [Therapy]; Right/th [Therapy]; Ventricular Dysfunction Creator An entity primarily responsible for making the resource Swetz K M; Freeman MR; AbouEzzeddine OF; Carter Kari A; Boilson BA; Ottenberg AL; Park Soon J; Mueller PS Description An account of the resource OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS: We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010., RESULTS: Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists., CONCLUSION: Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.4065/mcp.2010.0747" target="_blank" rel="noreferrer">10.4065/mcp.2010.0747</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 2011 AbouEzzeddine OF Advance Care Planning Advance Directives Aged Backlog Boilson BA Carter Kari A Decision Making DNAR DNAR Outcomes Family Female Freeman MR Heart Failure/th [Therapy] Heart-Assist Devices Humans Interdisciplinary Communication Journal Article Left/th [Therapy] Male Mayo Clinic Proceedings Middle Aged Mueller PS Ottenberg AL Palliative Care/mt [methods] Park Soon J Patient Care Team Quality Of Life Referral And Consultation Retrospective Studies Right/th [Therapy] Severity Of Illness Index Swetz K M Ventricular Dysfunction Withholding Treatment 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/10.1001/jama.2012.229" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.2012.229</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 retreat from advanced care planning Publisher An entity responsible for making the resource available Jama Date A point or period of time associated with an event in the lifecycle of the resource 2012 Subject The topic of the resource Humans; United States; Advance Directives; Physician-Patient Relations; Patient Protection and Affordable Care Act; Patient-Centered Care; decision making; Advance Care Planning/economics/trends; Centers for Medicare and Medicaid Services (U.S.); Insurance Coverage/legislation & jurisprudence; Journal of Palliative Medicine Briefings; Medicare/economics; Terminal Care/economics/standards Creator An entity primarily responsible for making the resource Tinetti ME Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jama.2012.229" target="_blank" rel="noreferrer">10.1001/jama.2012.229</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 2012 Advance Care Planning/economics/trends Advance Directives Backlog Centers for Medicare and Medicaid Services (U.S.) Decision Making Humans Insurance Coverage/legislation & jurisprudence JAMA Journal Article Journal of Palliative Medicine Briefings Medicare/economics Patient Protection and Affordable Care Act Patient-centered Care Physician-patient Relations Terminal Care/economics/standards Tinetti ME United States 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/10.1016/j.outlook.2012.08.012" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.outlook.2012.08.012</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 Communication and advanced care planning in palliative and end-of-life care. Publisher An entity responsible for making the resource available Nursing Outlook Date A point or period of time associated with an event in the lifecycle of the resource 2012 Subject The topic of the resource Humans; United States; Advance Directives; advance care planning; DNAR; Palliative Care; Communication; Terminal Care; Clinical Nursing Research Creator An entity primarily responsible for making the resource Waldrop DP; Meeker MA Description An account of the resource Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and end-of-life care. Two focused Medline searches were conducted to locate articles that addressed ACP in the U.S. Content analysis was utilized to summarize and categorize the literature into five domains: (1) ADs, (2) ACP and communication, (3) Barriers to ACP, (4) Differential domains of ACP, and (5) Interventions to enhance the process. Policies and protocols for ACP and communication have been developed to facilitate the process in different patient populations and locations of care. Effective ACP is an essential component of person-centered end-of-life and palliative care.Copyright © 2012 Elsevier Inc. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.outlook.2012.08.012" target="_blank" rel="noreferrer">10.1016/j.outlook.2012.08.012</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 2012 Advance Care Planning Advance Directives Backlog Clinical Nursing Research Communication DNAR Humans Journal Article Meeker MA Nursing Outlook Palliative Care Terminal Care United States Waldrop DP 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/10.1111/j.1365-2648.2011.05892.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2648.2011.05892.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 Is an advance care planning model feasible in community palliative care? A multi-site action research approach. Publisher An entity responsible for making the resource available Journal Of Advanced Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2012 Subject The topic of the resource Female; Humans; Male; Advance Directives; Adult; Victoria; Aged; Middle Aged; Program Evaluation; Urban Population; 80 and over; DNAR; Organizational; Palliative Care/og [Organization & Administration]; Terminal Care/og [Organization & Administration]; Advance Care Planning/og [Organization & Administration]; Models; Community Health Services/og [Organization & Administration]; Rural Population Creator An entity primarily responsible for making the resource Blackford J; Street A Description An account of the resource AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide commitment and preparedness for health service reform to embed advance care planning into routine practice. Internationally, such programmes have been implemented predominantly in aged and acute care with more recent work in primary care., METHODS: A multi-site action research was conducted over a 16-month period in 2007-2009 with three Victorian community palliative care services. Using mixed method data collection strategies to assess feasibility, we conducted a baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted key informant interviews (n = 9)., SETTINGS AND PARTICIPANTS: Three community palliative care services: one regional and two metropolitan services in Victoria, Australia., RESULTS: The services demonstrated that it was feasible to embed the Model into their organizational structures. Advance care planning conversations and involvement of family was an important outcome measure rather than completion rate of advance care planning documents in community settings. Services adapted and applied their own concept of community, which widened the impact of the model. Changes to quality audit processes were essential to consolidate the model into routine palliative care practice., CONCLUSION: An advance care planning model is feasible for community palliative care services. Quality audit processes are an essential component of the Model with documentation of advance care planning discussion established as an important outcome measure.Copyright © 2011 Blackwell Publishing Ltd. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/j.1365-2648.2011.05892.x" target="_blank" rel="noreferrer">10.1111/j.1365-2648.2011.05892.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). Type The nature or genre of the resource Journal Article 2012 80 And Over Adult Advance Care Planning/og [Organization & Administration] Advance Directives Aged Backlog Blackford J Community Health Services/og [Organization & Administration] DNAR Female Humans Journal Article Journal Of Advanced Nursing Male Middle Aged Models Organizational Palliative Care/og [Organization & Administration] Program Evaluation Rural Population Street A Terminal Care/og [organization & Administration] Urban Population Victoria 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/10.1111/j.1365-2702.2012.04179.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2702.2012.04179.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 Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services. Publisher An entity responsible for making the resource available Journal Of Clinical Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2012 Subject The topic of the resource Humans; Terminal Care; Advance Directives; Victoria; Qualitative Research; Health Services Research; Nursing Staff; advance care planning; DNAR; Palliative Care; Organizational; Models; Community Health Services; Program Evaluation/mt [Methods]; Community Health Services/og [Organization & Administration] Creator An entity primarily responsible for making the resource Blackford J; Street A Description An account of the resource AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services., DESIGN: Multisite action research approach., METHODS: Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool., RESULTS: The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies., CONCLUSION: The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes., RELEVANCE TO CLINICAL PRACTICE: The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services.Copyright © 2012 Blackwell Publishing Ltd. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/j.1365-2702.2012.04179.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2012.04179.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). Type The nature or genre of the resource Journal Article 2012 Advance Care Planning Advance Directives Backlog Blackford J Community Health Services Community Health Services/og [Organization & Administration] DNAR Health Services Research Humans Journal Article Journal of Clinical Nursing Models Nursing Staff Organizational Palliative Care Program Evaluation/mt [Methods] Qualitative Research Street A Terminal Care Victoria 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 2017 List URL Address <a href="http://doi.org/10.1002/ppul.23559" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.23559</a> Notes <p>Kazmerski, Traci M<br />Weiner, Daniel J<br />Matisko, Janice<br />Schachner, Diane<br />Lerch, Whitney<br />May, Carol<br />Maurer, Scott H</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 Advance care planning in adolescents with cystic fibrosis: A quality improvement project Publisher An entity responsible for making the resource available Pediatric Pulmonology Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Advance Care Planning; Attitude To Health; Cystic Fibrosis/th [therapy]; Adolescent; Advance Directives; Cystic Fibrosis/pp [physiopathology]; Female; Forced Expiratory Volume; Humans; Male; Noninvasive Ventilation; Oxygen Inhalation Therapy; Patient Care Planning; Proxy; Quality Improvement; Severity Of Illness Index; Surveys And Questionnaires; Terminal Care; Young Adult Creator An entity primarily responsible for making the resource Kazmerski TM; Weiner DJ; Matisko J; Schachner D; Lerch W; May C; Maurer SH Description An account of the resource INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider attitudes and preferences regarding ACP discussions and tools. MATERIALS AND METHODS: Patients <=22 years with advanced CF (FEV₁ <=40% predicted, >2 pulmonary exacerbations requiring IV antibiotics in 1 year, and/or use of home oxygen or non-invasive ventilation) were referred to the pediatric palliative care team (PC). After establishing rapport, ACP was discussed using Voicing My CHOiCESTM: An Advanced Care Planning Guide (VMC). Patients completed a survey assessing attitudes and preferences around ACP. PC also led a training session for CF providers around ACP and VMC and provider attitudes were assessed via a pre- and post-training survey. RESULTS: Twelve patients (mean age 17.9+/-2.2 years) reviewed VMC and completed the ACP survey. The majority (83%) found ACP helpful. None felt it was harmful. All found VMC easy to understand and 90% felt it was appropriate for patients with CF. Of participating CF providers (pre-training, n=6; post-training, n=7), 83% found ACP worthwhile, but desired more training in this area. All found the training session useful and felt VMC was appropriate for patients with CF. DISCUSSION: Adolescents with advanced CF disease felt ACP was a positive experience and not harmful. CF providers valued ACP, but desired more training. Both patients and providers felt that VMC was a useful, disease-appropriate tool. Pediatr Pulmonol. 2016;51:1304-1310. � 2016 Wiley Periodicals, Inc. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/ppul.23559" target="_blank" rel="noreferrer">10.1002/ppul.23559</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). 2016 Adolescent Advance Care Planning Advance Directives Attitude To Health Cystic Fibrosis/pp [physiopathology] Cystic Fibrosis/th [therapy] December 2017 List Female Forced Expiratory Volume Humans Kazmerski TM Lerch W Male Matisko J Maurer SH May C Noninvasive Ventilation Oxygen Inhalation Therapy Patient Care Planning Pediatric Pulmonology Proxy Quality Improvement Schachner D Severity Of Illness Index Surveys And Questionnaires Terminal Care Weiner DJ Young Adult 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 An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions 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 2016 Subject The topic of the resource Acute Pain/therapy; Adolescent; Adult; Advance Directives; Aged; Attitude Of Health Personnel; Canada; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Medical Staff Hospital/psychology; Middle Aged; Nursing Staff Hospital/psychology; Palliative Care/standards; Pediatric Nursing/standards; Practice Guidelines As Topic; Respiratory Distress Syndrome Adult/therapy; Surveys And Questionnaires; Young Adult Creator An entity primarily responsible for making the resource Bidet G; Daoust L; Duval M; Ducruet T; Toledano B; Humbert N Description An account of the resource BACKGROUND: An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered. OBJECTIVES: The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD. METHODS: A survey was distributed to all physicians/nurses working on wards with pediatric palliative care patients. Answers to the survey were anonymous, done on a voluntary basis, and after consent of the participant. RESULTS: Surveys (258/548) were answered corresponding to a response rate of 47%. According to the respondents, the most important motivations in using the OPD were the desire to relieve patient's distress and the speed of relief of distress by the OPD; the most important obstacles were going against the patient's/his or her family's wishes and fear of hastening death. The respondents reported that the OPD was frequently (56%) or always (36%) effective in relieving the patient's distress. The respondents felt sometimes (16%), frequently (34%), or always (41%) comfortable in giving the OPD. They thought the OPD could never (12%), rarely (32%), sometimes (46%), frequently (8%), or always (1%) hasten death. Physicians were less favorable than nurses with the autonomy of bedside nurses to initiate the OPD before notifying the physician (p = 0.04). Overall, 95% of respondents considered that they would use the OPD in the future. CONCLUSIONS: Data from this survey shows that respondents are in favor of using the OPD at SJH and find it effective. Further training as well as support for health care professionals are mandatory in such palliative care settings. Identifier An unambiguous reference to the resource within a given context DOI: 10.1089/jpm.2015.0100 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 Acute Pain/therapy Adolescent Adult Advance Directives Aged Attitude Of Health Personnel Bidet G Canada Child Child Preschool Daoust L Ducruet T Duval M Female Humans Humbert N Infant Infant Newborn Journal of Palliative Medicine Male March 2016 List Medical Staff Hospital/psychology Middle Aged Nursing Staff Hospital/psychology Palliative Care/standards Pediatric Nursing/standards Practice Guidelines As Topic Respiratory Distress Syndrome Adult/therapy Surveys And Questionnaires Toledano B Young Adult