1
40
118
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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 2016 List
URL Address
<a href="http://adc.bmj.com/content/101/10/984.long" target="_blank" rel="noreferrer">http://adc.bmj.com/content/101/10/984.long</a>
Dublin Core
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Title
A name given to the resource
The Importance Of Early Involvement Of Paediatric Palliative Care For Patients With Severe Congenital Heart Disease.
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Cardiology; Palliative Care; Advance Care Planning; Congenital Heart Disease; End-of-life Care
Creator
An entity primarily responsible for making the resource
S Bertaud; Lloyd DF; Laddie J; Razavi R
Description
An account of the resource
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.
Identifier
An unambiguous reference to the resource within a given context
DOI: <a href="https://doi.org/10.1136/archdischild-2015-309789" target="_blank" rel="noreferrer">10.1136/archdischild-2015-309789</a>
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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
Advance Care Planning
April 2016 List
Archives of Disease in Childhood
Cardiology
Congenital Heart Disease
End-of-life Care
Laddie J
Lloyd DF
Palliative Care
Razavi R
S Bertaud
-
Text
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Citation List Month
December 2016 List
URL Address
<a href="https://doi.org/10.1136/bmj.i6385">https://doi.org/10.1136/bmj.i6385</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 Care for Infants, Children and Young People with Life Limiting Conditions: Summary of Nice Guidance
Publisher
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British Medical Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Advance Care Planning; Child; Humans; Infant; Patient Care Team; Patient Participation; Practice Guidelines As Topic; State Medicine; Terminal Care; United Kingdom
Creator
An entity primarily responsible for making the resource
Villanueva G; Murphy; MS; Vickers D; Harrop E; Dworzynski K
Description
An account of the resource
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future. Sometimes it may begin before the child’s birth. It is part of the overall care of the child or young person and runs in parallel with other active treatments for the underlying condition itself.1 Finally, it includes those aspects related to the care of the dying.
This guideline was commissioned with the aim to standardise end of life care for infants, children, and young people living with a life limiting condition, and thus promote equity and consistency. Important themes are to involve children and young people and their parents or carers in decisions about their care, facilitate their care in their preferred location (most likely home), and plan for day and night care.
This article summarises the most recent guidance from the recent National Institute for Health and Care Excellence (NICE) on the planning and management of end of life care in infants, children, and young people.2 For a visual summary, please see infographic.
Identifier
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<a href="https://doi.org/10.1136/bmj.i6385">10.1136/bmj.i6385</a>
Rights
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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
British Medical Journal
Child
December 2016 List
Dworzynski K
Harrop E
Humans
Infant
MS
Murphy
Patient Care Team
Patient Participation
Practice Guidelines As Topic
State Medicine
Terminal Care
United Kingdom
Vickers D
Villanueva G
-
Text
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Citation List Month
March 2016 List
Dublin Core
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Title
A name given to the resource
Early Introduction Of Palliative Care And Advanced Care Planning For Children With Complex Chronic Medical Conditions: A Pilot Study.
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
2016
Subject
The topic of the resource
Special‐needs Children; Decision Making; Advance Care Planning; Palliative Care; End Of Life Care; Palliative Care; Physicians; Primary Care; Patient Care Planning; Hospice Care; Children & Youth
Advance Care Planning; Decision-making; End Of Life; Palliative Care; Special-needs Children
Creator
An entity primarily responsible for making the resource
Liberman DB; Song E; Radbill LM; Pham PK; Derrington SF
Description
An account of the resource
BACKGROUND:
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning.
METHODS:
Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility.
RESULTS:
Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation.
CONCLUSIONS:
Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1111/cch.12332
Rights
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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
Advance Care Planning
Child: Care, Health and Development
Children & Youth
Decision Making
Decision-making
Derrington SF
End Of Life
End Of Life Care
Hospice Care
Liberman DB
March 2016 List
Palliative Care
Patient Care Planning
Pham PK
Physicians
Primary Care
Radbill LM
Song E
Special-needs Children
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
November 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
"hope For The Best, Prepare For The Worst": A Qualitative Interview Study On Parents' Needs And Fears In Pediatric Advance Care Planning.
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
Advance Care Planning; Advance Directive; Decision-making; Pediatrics; Resuscitation Orders; Terminal Care
Creator
An entity primarily responsible for making the resource
Lotz JD; Daxer M; Jox RJ; Borasio GD; Fuhrer M
Description
An account of the resource
BACKGROUND:
Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning.
AIM:
We aimed to investigate parents' views and needs regarding pediatric advance care planning.
DESIGN:
We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña.
SETTING/PARTICIPANTS:
We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender.
RESULTS:
Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning.
CONCLUSION:
Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1177/0269216316679913
Rights
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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
Advance Care Planning
Advance Directive
Borasio GD
Daxer M
Decision-making
Führer M
Journal of Palliative Medicine
Jox RJ
Lotz JD
November 2016 List
Pediatrics
Resuscitation Orders
Terminal Care
-
Text
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Citation List Month
September 2016 List
Dublin Core
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Title
A name given to the resource
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Publisher
An entity responsible for making the resource available
Health Expectations
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; Children and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
Creator
An entity primarily responsible for making the resource
Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Identifier
An unambiguous reference to the resource within a given context
10.1111/hex.12500
Rights
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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
Advance Care Planning
Beecham E
Bluebond-Langner M
children and young people
Crocker J
Dinsdale A
Health Expectations
Hemsley J
Interviews
Jones L
Kelly P
Life-limiting Conditions
Life-threatening Illnesses
Oostendorp L
Parents
Russell J
September 2016 List
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2017 List
Notes
<p>Dallas, Ronald H Kimmel, Allison Wilkins, Megan L Rana, Sohail Garcia, Ana Cheng, Yao I Wang, Jichuan Lyon, Maureen E Adolescent Palliative Care Consortium. Using Smart Source Parsing Dec e20161854 peds.2016-1854</p>
Dublin Core
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Title
A name given to the resource
Acceptability Of Family-centered Advanced Care Planning For Adolescents With Hiv
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
2016
Subject
The topic of the resource
Adolescent Health Services/sn [statistics & Numerical Data]; Advance Care Planning; Family/px [psychology]; Hiv Infections/th [therapy]; Patient Acceptance Of Health Care/sn [statistics & Numerical Data]; Adolescent; Family Nursing; Female; Hiv Infections/px [psychology]; Humans; Male; Prospective Studies; Surveys And Questionnaires; United States; Young Adult
Creator
An entity primarily responsible for making the resource
Dallas R H; Kimmel A; Wilkins M L; Rana S; Garcia A; Cheng Y I; Wang J; Lyon M; Adolescent Palliative Care Consortium
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (beta = 1.16, P = .02). There were no adverse events. CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2016-1854
Rights
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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
Adolescent Health Services/sn [statistics & Numerical Data]
Adolescent Palliative Care Consortium
Advance Care Planning
Cheng Y I
Dallas R H
Family Nursing
Family/px [psychology]
Female
Garcia A
Hiv Infections/px [psychology]
Hiv Infections/th [therapy]
Humans
Kimmel A
Lyon M
Male
Patient Acceptance Of Health Care/sn [statistics & Numerical Data]
Pediatrics
Prospective Studies
Rana S
September 2017 List
Surveys And Questionnaires
United States
Wang J
Wilkins M L
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
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/28359212
Dublin Core
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Title
A name given to the resource
A Randomized Clinical Trial Of Adolescents With Hiv/aids: Pediatric Advance Care Planning
Publisher
An entity responsible for making the resource available
Aids Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Advance Care Planning; Congruence; Decision-making; End-of-life; Palliative Care; Pediatric
Creator
An entity primarily responsible for making the resource
Lyon Maureen E; D'Angelo Lawrence J; Dallas Ronald H; Hinds S; Garvie A; Wilkins Megan L; Garcia A; Briggs Linda; Flynn Patricia M; Rana Sohail R; Cheng Yao Iris; Wang Jichuan
Description
An account of the resource
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
Identifier
An unambiguous reference to the resource within a given context
10.1080/09540121.2017.1308463
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Advance Care Planning
AIDS care
Briggs Linda
Cheng Yao Iris
congruence
D'Angelo Lawrence J
Dallas Ronald H
Decision Making
end-of-life
Flynn Patricia M
Garcia A
Garvie A
Hinds S
June 2017 List
Lyon Maureen E
Palliative Care
Pediatric
Rana Sohail R
Wang Jichuan
Wilkins Megan L
-
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
July 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
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Publisher
An entity responsible for making the resource available
Journal Of Adolescent Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
M.E. Lyon; Wang J
Description
An account of the resource
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jadohealth.2013.10.206
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).
2014
Adolescent
Adult
Advance Care Planning
Advance Care Planning/statistics & Numerical Data
Advance Directive
Advance Directives/psychology
Advance Directives/statistics & Numerical Data
African-american
Anxiety/complications
Anxiety/psychology
Cancer
Communication
Decision-making
Depression/complications
Depression/psychology
End Of Life
Family
Family Intervention
Feasibility Studies
Female
Follow-up Studies
Humans
Journal of Adolescent Health
July 2016 List
Longitudinal Studies
M.E. Lyon
Male
Neoplasms/complications
Neoplasms/psychology
Patient Satisfaction/statistics & Numerical Data
Pediatric Palliative Care
Quality Of Life/psychology
Spirituality
Surveys And Questionnaires
United States
Wang J
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
August 2017 List
URL Address
<a href="http://www.ingentaconnect.com/content/wk/aog/2016/00000128/00000006/art00031" target="_blank" rel="noreferrer">http://www.ingentaconnect.com/content/wk/aog/2016/00000128/00000006/art00031</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative Care in Obstetrics and Gynecology
Publisher
An entity responsible for making the resource available
Journal Of Obstetrics And Gynecology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pain Management; Perinatal Care; Advance Care Planning; Communication; Female; Genital Neoplasms Female/complications/psychology/ Therapy; Humans; Infant Newborn; Life Expectancy; Mood Disorders/etiology/therapy; Nausea/therapy; Pain/etiology; Palliative
Creator
An entity primarily responsible for making the resource
Lefkowits C; Solomon C
Description
An account of the resource
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician–gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1097/AOG.0000000000001739" target="_blank" rel="noreferrer">10.1097/AOG.0000000000001739</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
Advance Care Planning
August 2017 List
Communication
Female
Genital Neoplasms Female/complications/psychology/ Therapy
Humans
Infant Newborn
Journal Of Obstetrics And Gynecology
Lefkowits C
Life Expectancy
Mood Disorders/etiology/therapy
Nausea/therapy
Pain Management
Pain/etiology
Palliative
Perinatal Care
Solomon C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=emex&AN=618183528
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
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Title
A name given to the resource
Late Effects of Treatment and Palliative Care
Publisher
An entity responsible for making the resource available
Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Central Nervous System Tumor; Palliative Therapy; 59-05-2 (methotrexate); 69-74-9 (cytarabine); 147-94-4 (cytarabine); 154-93-8 (carmustine); 7413-34-5 (methotrexate); 15475-56-6 (methotrexate); 15663-27-1 (cisplatin); 26035-31-4 (cisplatin); 96081-74-2 (cisplatin); Advance Care Planning; Appetite Disorder; Bone Density; Brain Tumor; Carmustine; Childhood Cancer Survivor; Cisplatin; Constipation; Corticosteroid; Cytarabine; Diarrhea; Dyspnea; Endocrine Disease; Fatigue; Genetic Polymorphism; Health Care Quality; Human; Incidence; Medical Decision Making; Medulloblastoma; Methotrexate; Morbidity; Mortality Rate; Nausea And Vomiting; Neuroectoderm Tumor; Neuropathic Pain; Neuropsychological Test; Pain Assessment; Patient Care; Phase 1 Clinical Trial (topic); Priority Journal; Psychosocial Disorder; Quality Of Life; Questionnaire; Radiation Injury; Respiration Depression; Seizure; Signal Transduction; Spasticity
Creator
An entity primarily responsible for making the resource
Chang E; Goldsby R; Mueller S; Banerjee A
Description
An account of the resource
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high morbidity rates related to the late effects of treatment. While intensified therapy has improved average 5-year survival in patients with pediatric brain tumors to 73 % (Ostrom et al. 2014) from less than 60 % in 1975-1979 (Linabery and Ross 2008), it has also increased the long-term consequences. Survivors may develop a spectrum of late effects ranging from subtle memory loss and cosmetic anomalies to severe neurological disabilities and recurrent neoplasms. While seemingly quite different, both palliative and late-effects care focus on improving quality of life for patients and need to be integrated into the overall care plan.
Identifier
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10.1007/978-3-319-30789-3_17
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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).
147-94-4 (cytarabine)
154-93-8 (carmustine)
15475-56-6 (methotrexate)
15663-27-1 (cisplatin)
2017
26035-31-4 (cisplatin)
59-05-2 (methotrexate)
69-74-9 (cytarabine)
7413-34-5 (methotrexate)
96081-74-2 (cisplatin)
Advance Care Planning
Appetite Disorder
Banerjee A
Bone Density
Brain Tumor
Carmustine
Central Nervous System Tumor
Chang E
Childhood Cancer Survivor
Cisplatin
Constipation
Corticosteroid
Cytarabine
Diarrhea
Dyspnea
Endocrine Disease
Fatigue
Genetic Polymorphism
Goldsby R
Health Care Quality
Human
Incidence
Medical Decision Making
Medulloblastoma
Methotrexate
Morbidity
Mortality Rate
Mueller S
Nausea And Vomiting
Neuroectoderm Tumor
Neuropathic Pain
Neuropsychological Test
November 2017 List
Pain Assessment
Palliative Therapy
Patient Care
Pediatric Oncology
Phase 1 Clinical Trial (topic)
Priority Journal
Psychosocial Disorder
Quality Of Life
Questionnaire
Radiation Injury
Respiration Depression
Seizure
Signal Transduction
Spasticity
-
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
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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 (FEV<sub>1</sub> <=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
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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
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1089/jayao.2017.0032" target="_blank" rel="noreferrer">http://doi.org/10.1089/jayao.2017.0032</a>
Dublin Core
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Title
A name given to the resource
Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit
Publisher
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Journal Of Adolescent And Young Adult Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Advance Care Planning; Cardiopulmonary Resuscitation; Do Not Resuscitate; End-of-life
Creator
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Fletcher S; Hughes R; Pickstock S; Auret K
Description
An account of the resource
PURPOSE: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. METHODS: Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. RESULTS: Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults (p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group (p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults (p = 0.001). CONCLUSIONS: The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.
Identifier
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<a href="http://doi.org/10.1089/jayao.2017.0032" target="_blank" rel="noreferrer">10.1089/jayao.2017.0032</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Advance Care Planning
Auret K
Cardiopulmonary Resuscitation
Do Not Resuscitate
end-of-life
Fletcher S
Hughes R
Journal Of Adolescent And Young Adult Oncology
Oncology 2017 List
Pickstock S
-
Dublin Core
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Title
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February 2018 List
Text
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Citation List Month
February 2018 List
URL Address
<a href="http://doi.org/10.1111/jpc.13818" target="_blank" rel="noreferrer">http://doi.org/10.1111/jpc.13818</a>
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Title
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Paediatric advance care planning: Physician experience and education in initiating difficult discussions
Publisher
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Journal Of Paediatrics And Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
advance care planning; Education; General Paediatrics
Creator
An entity primarily responsible for making the resource
Basu S; Swil K
Description
An account of the resource
AIM: Our study aimed to assess physicians' experiences and education regarding advance care planning (ACP) in paediatrics. We aimed to assess barriers to ACP initiation, including the adequacy of exposure and education regarding ACP and whether practitioners would deem improved education and resource provision useful. METHODS: A 25-question survey was designed following literature review. Paediatricians, intensivists and advanced trainees at Sydney Children's Hospital were invited to complete the online survey. Ninety-two responses were obtained over a 10-week period. RESULTS: Patients with life-limiting conditions are encountered frequently, with 57% of respondents caring for at least 10 such patients during the last 2 years. In total, 64% of respondents felt that ACP discussions should occur early around the time of diagnosis or during a period of stability; however, 57% observed discussions occurring late in illness after multiple acute, severe deteriorations. In total, 46% felt that multidisciplinary teams were the most appropriate to initiate ACP discussions. Prognostic uncertainty was the most common barrier to ACP initiation. Lack of experience and education were identified as barriers by 43 and 32%, respectively. The majority of respondents regarded exposure to ACP and education during training as inadequate. CONCLUSIONS: ACP discussions are being initiated later than physicians deem optimal. Of concern, clinicians prefer ACP discussions to be initiated by multidisciplinary teams, which may create a barrier to timely initiation. Barriers due to lack of education and experience could be overcome with improvements in training. Provision of education and resources would be welcomed and improve clinician skills in this area.
Identifier
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<a href="http://doi.org/10.1111/jpc.13818" target="_blank" rel="noreferrer">10.1111/jpc.13818</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Advance Care Planning
Basu S
Education
February 2018 List
General Paediatrics
Journal of Paediatrics and Child Health
Swil K
-
Dublin Core
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Title
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February 2018 List
Text
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Citation List Month
February 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2016.03.017</a>
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Title
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Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
assisted circulation; medical specialist; palliative therapy; Adult; advance care planning; Article; Child; Clinical Article; decision making; Family; Heart-Assist Devices; heart failure; hospice care; Human; Medicaid; Medicare; Palliative Care; patient referral; Perception; Qualitative Research; Self-Help Devices; semi structured interview; telephone interview; ventricular assist device
Creator
An entity primarily responsible for making the resource
Sagin A; Kirkpatrick JN; Pisani BA; Fahlberg BB; Sundlof AL; O'Connor NR
Description
An account of the resource
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of those collaborations or outcomes for patients and families. Objectives To assess how Centers for Medicare & Medicaid Services' regulations have changed collaboration between palliative care and MCS teams and how this collaboration is perceived by MCS team members. Methods After obtaining verbal consent, members of MCS teams were interviewed using semistructured telephone interviews. Interviews were transcribed, and content was coded and analyzed using qualitative methods. Results Models for collaboration varied widely between institutions. Several expected themes emerged from interviews: 1) improvements over time in the relationship between palliative care specialists and MCS teams, 2) palliative care specialists as facilitators of advance care planning, and 3) referral to hospice and ventricular assist device deactivation as specific areas for collaboration. Several unexpected themes also emerged: 4) the emergence of dedicated heart failure palliative care teams, 5) palliative care specialists as impartial voices in decision making, 6) palliative care specialists as extra support for MCS team members, and 7) the perception of improved patient and family experiences with palliative care team exposure. Conclusion Although the structure of collaboration varies between institutions, collaboration between MCS teams and palliative care specialists is increasing and often preceded the Centers for Medicare & Medicaid Services requirement. Overall impressions of palliative care specialists are highly positive, with perceptions of improved patient and family experience and decreased burden on MCS team members.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.03.017</a>
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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
Adult
Advance Care Planning
Article
assisted circulation
Child
Clinical Article
Decision Making
Fahlberg BB
Family
February 2018 List
Heart Failure
Heart-Assist Devices
Hospice Care
Human
Journal of Pain and Symptom Management
Kirkpatrick JN
Medicaid
Medical Specialist
Medicare
O'Connor NR
Palliative Care
Palliative Therapy
Patient Referral
Perception
Pisani BA
Qualitative Research
Sagin A
Self-Help Devices
Semi Structured Interview
Sundlof AL
telephone interview
ventricular assist device
-
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>
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Title
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Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.
Publisher
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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>
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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
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
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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
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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/10.4065/mcp.2010.0747" target="_blank" rel="noreferrer">http://doi.org/10.4065/mcp.2010.0747</a>
Dublin Core
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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/10.1016/s0749-0690(05)70016-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0749-0690(05)70016-1</a>
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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>
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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/10.1016/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
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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/10.1001/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/10.6004/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>
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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/10.1111/j.1467-842x.2005.tb00754.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1467-842x.2005.tb00754.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
Documenting end of life decisions in residential aged care facilities in South Australia.
Publisher
An entity responsible for making the resource available
Australian And New Zealand Journal Of Public Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Health Services Research; Sensitivity and Specificity; advance care planning; DNAR; Resuscitation Orders; Attitude to Death; documentation; South Australia; Palliative Care/ut [Utilization]; Advance Directives/td [Trends]; Homes for the Aged; Life Support Care/st [Standards]; Skilled Nursing Facilities; Life Support Care/td [Trends]
Creator
An entity primarily responsible for making the resource
Brown M; Grbich C; Maddocks I; Parker D; Connellan PR; Willis E
Description
An account of the resource
OBJECTIVE: This research examined the provision of palliative care for residents with a non-cancer diagnosis including the use of advance directives and advance care planning as part of palliative care policies in residential aged care facilities in South Australia. There are no guidelines for recording residents' wishes if they are no longer competent., METHODS: Stage 1 involved a survey of 90 randomly selected aged care facilities. Stage 2 involved case studies of 69 residents, appropriate for palliative care, from 17 facilities and interviews with 15 directors of care., RESULTS: Most residential aged care facilities used forms to record residents' wishes about end of life care, but there was little consistency. Some had no palliative care policy and few facilities required a formal advance directive. Not all residents had formally appointed a proxy., CONCLUSIONS: Residential aged care facilities should be required to develop and implement a palliative care policy acknowledging the Accreditation Standards and State legislation and including a simple tool for advance care planning. Case conferencing could assist in discussing and documenting the resident's wishes. Public education is essential to increase community and professional awareness in order to promote empowerment for the increasing number of older people who will die in residential aged care facilities.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1467-842x.2005.tb00754.x" target="_blank" rel="noreferrer">10.1111/j.1467-842x.2005.tb00754.x</a>
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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
2005
Advance Care Planning
Advance Directives/td [Trends]
Attitude To Death
Australian And New Zealand Journal Of Public Health
Backlog
Brown M
Connellan PR
DNAR
Documentation
Female
Grbich C
Health Services Research
Homes for the Aged
Humans
Journal Article
Life Support Care/st [Standards]
Life Support Care/td [Trends]
Maddocks I
Male
Palliative Care/ut [Utilization]
Parker D
Resuscitation Orders
Sensitivity and Specificity
Skilled Nursing Facilities
South Australia
Willis E
-
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
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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>
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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/10.1177/0269216308094336" 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/10.1001/jama.2009.396" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.2009.396</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
Communicating with seriously ill patients: better words to say
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
2009
Subject
The topic of the resource
Humans; Terminal Care; Physician-Patient Relations; Prognosis; Language; advance care planning
Creator
An entity primarily responsible for making the resource
Pantilat SZ
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.2009.396" target="_blank" rel="noreferrer">10.1001/jama.2009.396</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
2009
2009
Advance Care Planning
Backlog
Humans
JAMA
Journal Article
Language
Pantilat SZ
Physician-patient Relations
Prognosis
Terminal Care
-
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.2012-2394" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-2394</a>
<a href="http://pediatrics.aappublications.org/content/early/2013/02/05/peds.2012-2394" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2013/02/05/peds.2012-2394</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 Care Planning: A Systematic Review
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
2013
Subject
The topic of the resource
Child; Humans; Palliative Care; end of life; Pediatric; advance care planning; DNAR; Pediatrics/td [Trends]; Advance Care Planning/td [Trends]; pediatric advance life support [PALS]; Pediatrics/mt [Methods]; Randomized Controlled Trials as Topic/mt [Methods]
Creator
An entity primarily responsible for making the resource
Lotz JD; Jox RJ; Borasio GD; Führer M
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with life-limiting illnesses. Research has focused on adults, but ACP is also being practiced in pediatrics. We conducted a systematic review on empirical literature on pediatric ACP (pACP) to assess current practices, effects, and perspectives of pACP. METHODS: We searched PubMed, BELIT, and PSYCinfo for empirical literature on pACP, published January 1991 through January 2012. Titles, abstracts, and full texts were screened by 3 independent reviewers for studies that met the predefined criteria. The evidence level of the studies was assessed. Relevant study outcomes were retrieved according to predefined questions. RESULTS: We included 5 qualitative and 8 quantitative studies. Only 3 pACP programs were identified, all from the United States. Two of them were informed by adult programs. Major pACP features are discussions between families and care providers, as well as advance directives. A chaplain and other providers may be involved if required. Programs vary in how well they are evaluated; only 1 was studied by using a randomized controlled trial. Preliminary data suggest that pACP can successfully be implemented and is perceived as helpful. It may be emotionally relieving and facilitate communication and decision-making. Major challenges are negative reactions from emergency services, schools, and the community. CONCLUSIONS: There are few systematic pACP programs worldwide and none in Europe. Future research should investigate the needs of all stakeholders. In particular, the perspective of professionals has so far been neglected.
2013-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-2394" target="_blank" rel="noreferrer">10.1542/peds.2012-2394</a>
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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
2013
Advance Care Planning
Advance Care Planning/td [Trends]
Backlog
Borasio GD
Child
DNAR
End Of Life
Führer M
Humans
Journal Article
Jox RJ
Lotz JD
Palliative Care
Pediatric
pediatric advance life support [PALS]
Pediatrics
Pediatrics/mt [methods]
Pediatrics/td [trends]
Randomized Controlled Trials as Topic/mt [Methods]
-
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.pedn.2013.04.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pedn.2013.04.002</a>
Dublin Core
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Title
A name given to the resource
Advanced care planning discussions with adolescents and young adults with cancer
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
adolescent; Female; Humans; Male; Young Adult; Neoplasms; Terminal Care; Parent-Child Relations; Parents; Professional-Family Relations; Disease Progression; Legal Guardians; quality of life; advance care planning; Neoplasm Invasiveness
Creator
An entity primarily responsible for making the resource
McBride D
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pedn.2013.04.002" target="_blank" rel="noreferrer">10.1016/j.pedn.2013.04.002</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
Description
An account of the resource
2013-08
2013
Adolescent
Advance Care Planning
Backlog
Disease Progression
Female
Humans
Journal Article
Journal of Pediatric Nursing
Legal Guardians
Male
McBride D
Neoplasm Invasiveness
Neoplasms
Parent-child Relations
Parents
Professional-family Relations
Quality Of Life
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/10.1001/jamapediatrics.2013.2204" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2013.2204</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
Clinician perspectives regarding the do-not-resuscitate order
Publisher
An entity responsible for making the resource available
Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Female; Humans; Male; decision making; Critical Illness; Data Collection; Attitude of Health Personnel; Physicians; Boston; Resuscitation Orders; Nurses; Heart Arrest; advance care planning
Creator
An entity primarily responsible for making the resource
Sanderson A; Zurakowski D; Wolfe J
Description
An account of the resource
IMPORTANCE: While data exist regarding the frequency and timing of the do-not-resuscitate (DNR) order in children, little is known about clinician attitudes and behaviors regarding this order. OBJECTIVE: To identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients. DESIGN: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed regarding their attitudes and behaviors about DNR orders. RESULTS: In total, 107 physicians and 159 nurses responded to the survey (N = 266). There was substantial variability in the interpretation of the DNR order. Most clinicians (66.9%) believe that a DNR order indicates limitation of resuscitative measures only on cardiopulmonary arrest. In reality, however, more than 85% believe that care changes beyond response to cardiopulmonary arrest, varying from increased attention to comfort to less clinician attentiveness. In addition, most clinicians reported that resuscitation status discussions take place later in the illness course than is ideal. CONCLUSIONS AND RELEVANCE: Clinicians use the DNR order not only as a guide for therapeutic decisions during a cardiopulmonary arrest but also as a surrogate for broader treatment directives. Most clinicians believe that DNR discussions should take place earlier than they actually do. Interventions aimed at improving clinician knowledge and skills in advance care discussions as well as the development of orders that address overall goals of care may improve care for children with serious illness.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2013.2204" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2013.2204</a>
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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
2013
Advance Care Planning
Attitude Of Health Personnel
Backlog
Boston
Critical Illness
Data Collection
Decision Making
Female
Heart Arrest
Humans
JAMA Pediatrics
Journal Article
Male
Nurses
Physicians
Resuscitation Orders
Sanderson A
Wolfe J
Zurakowski 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/10.7326/M14-0644" target="_blank" rel="noreferrer">http://doi.org/10.7326/M14-0644</a>
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Title
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Decision aids for advance care planning: an overview of the state of the science.
Publisher
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Annals Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Terminally Ill; Prognosis; Internet; advance care planning; Decision Support Techniques
Creator
An entity primarily responsible for making the resource
Butler M; Ratner E; McCreedy E; Shippee N; Kane RL
Description
An account of the resource
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.
2014-09
Identifier
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<a href="http://doi.org/10.7326/M14-0644" target="_blank" rel="noreferrer">10.7326/M14-0644</a>
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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
Advance Care Planning
Annals Of Internal Medicine
Backlog
Butler M
Decision Support Techniques
Humans
Internet
Journal Article
Kane RL
McCreedy E
Prognosis
Ratner E
Shippee N
Terminally Ill
-
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
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Pediatric advance directives: parents' knowledge, experience, and preferences
Publisher
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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
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<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</a>
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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/10.1097/SPC.0000000000000063" target="_blank" rel="noreferrer">http://doi.org/10.1097/SPC.0000000000000063</a>
Dublin Core
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Title
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Supportive and palliative care of children with metabolic and neurological diseases
Publisher
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Current Opinion In Supportive And Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Palliative Care; Terminal Care; Pediatrics; Parents; Communication; Nervous System Diseases; Risk Assessment; Hope; Stress; quality of life; Psychological; advance care planning; neurologic; Metabolic Diseases; Metabolic Diseases
Creator
An entity primarily responsible for making the resource
Hauer JM; Wolfe J
Description
An account of the resource
PURPOSE OF REVIEW: To review the role of pediatric palliative care (PPC) for children with metabolic and neurological diseases. RECENT FINDINGS: There is a growing body of literature in PPC, though it remains limited for children with metabolic and neurological diseases. Evidence indicates the benefit of PPC. Utilization of PPC programmes can facilitate communication, ensure that families are better informed, improve certainty with decisions, enhance positive emotions, result in fewer invasive interventions at the end of life, and have an impact on location of death. Barriers to utilization of PPC include concern about taking away hope and uncertainty about prognosis. Challenging areas for children with metabolic and neurological diseases include the identification of distressing symptoms and prognostic uncertainty. This article aims to review literature relevant to this group of children, as well as provide a framework when considering specific palliative care needs. SUMMARY: PPC for children with metabolic and neurological diseases can lessen a child's physical discomfort and enhance parental certainty with decision-making. These areas along with other needs throughout the illness trajectory and bereavement are being increasingly met by the growing availability of PPC programmes.
2014-09
Identifier
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<a href="http://doi.org/10.1097/SPC.0000000000000063" target="_blank" rel="noreferrer">10.1097/SPC.0000000000000063</a>
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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
Advance Care Planning
Backlog
Communication
Current Opinion in Supportive and Palliative Care
Hauer JM
Hope
Humans
Journal Article
Metabolic Diseases
Nervous System Diseases
neurologic
Palliative Care
Parents
Pediatrics
Psychological
Quality Of Life
Risk Assessment
Stress
Terminal Care
Wolfe 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/10.1089/jpm.2013.0374" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2013.0374</a>
Dublin Core
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Title
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Advance Care Planning: Challenges and Approaches for Pediatricians
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
advance care planning
Creator
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Heckford EJ; Beringer AJ
Description
An account of the resource
Abstract Background: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. Objective: Our aim was to review advance care planning for children with life-threatening or life-limiting conditions (LTLLCs) in our local area. Methods: We conducted a retrospective case note review. Study subjects were from two National Health Service (NHS) Trusts in Bristol in the United Kingdom. Cases were identified from Child Death Overview Panel data. Forty-two sets of case notes were reviewed in relation to 20 children. Measurements included quantitative and qualitative review of advance care planning in relation to standards set by The Association for Children's Palliative Care (ACT). Results: In 25% of cases there was no documented discussion with families about the approach to end of life (EOL). In 25% of cases there was no evidence of an advance care plan, and the content and accessibility of those that did exist was variable. Forty-five percent of families were not offered a choice with regard to location of care (LOC) in the last months of life and 50% were not offered a choice about location of death (LOD). Conclusions: We hope that acknowledgement of some of the challenges, alongside recognition of the clear benefits, of planning will help pediatricians to deliver this important area of care.
2014-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0374" target="_blank" rel="noreferrer">10.1089/jpm.2013.0374</a>
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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
Advance Care Planning
Backlog
Beringer AJ
Heckford EJ
Journal Article
Journal of Palliative Medicine
-
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 2018 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
June 2018 List
URL Address
<a href="http://doi.org/10.1080/2331205X.2017.1408251" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/2331205X.2017.1408251</a>
Dublin Core
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Title
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Physician perspectives on end-of-life care and pediatric palliative care for children in the Republic of Korea
Publisher
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Cogent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
advance care planning; palliative therapy; South Korea; adult; child; conference abstract; death; deterioration; diagnosis; female; financial management; human; interview; life sustaining treatment; male; organization; perception; psychosocial care; questionnaire; tertiary care center
Creator
An entity primarily responsible for making the resource
Kim M S; Kim C H; Yu J; Song IG
Description
An account of the resource
Introduction: Despite significant advances in disease treatment, resources for the pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. The obstacles to provide optimal PPC include inadequate funding, shortage of specialized professionals, and healthcare system, but the perception of health professionals is also very important. Purpose: This study explored pediatric doctors' perception of end-of-life care and needs on PPC in Korea. Materials and Methods: The study survey was developed based on a review of the palliative care literature and sample physician interview. A questionnaire was sent via online survey and mail to the pediatric doctors with specialized boards working at 43 tertiary hospitals in South Korea. Results: A total of 118 doctors responded to the survey. The median age was 37 years, 53% were female and 76% answered they have own child. Eighty percent responded that, in the previous 2 years, they cared for more than one pediatric patient who died. When asked about appropriate age for terminal state disclosure, 6%, 30%, 42% and 14% answered that pediatric patients should be informed if they are aged over 4, 7, 12, and 15 years old respectively. As for the life-sustaining treatments (LSTs) decision, 24% answered that discussions should be started when a child is diagnosed with incurable diseases, and 48% said advance care planning is needed in a state of constant deterioration even though actual death is not expected. Although only 7% of pediatric doctors had personal desire for use of LSTs when their own disease is incurable and in the deteriorating state, more respondents (29%) showed preferences to LSTs for children in the same situation. More than half of the respondents answered that they are not confident about advance care planning including LST decisions. Most respondents reported experiencing difficulties in PPC areas such as symptom management, ethical problems, and psychosocial support more than once every six months. Pediatric doctors indicated to the barriers to pediatric palliative care implementation as follows: the attitude of parents who prefer aggressive treatment (19%), shortage of PPC professionals and organizations (18%), negative perception on PPC among health professionals (16%), lack of financial support for PPC (12%), inadequate linkage between curative and palliative care (12%), and difficulties to decide when to refer a patient to PPC (10%). Conclusion: Our study showed pediatric doctors in Korea have low preferences to LSTs for children in the terminal state and perceive the needs of PPC. The results will guide the health authorities to design PPC program in Korea.
Identifier
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<a href="http://doi.org/10.1080/2331205X.2017.1408251" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2017.1408251</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Advance Care Planning
Child
Cogent Medicine
conference abstract
Death
Deterioration
Diagnosis
Female
financial management
Human
Interview
June 2018 List
Kim C H
Kim M S
Life Sustaining Treatment
Male
Organization
Palliative Therapy
Perception
psychosocial care
Questionnaire
Song IG
South Korea
tertiary care center
Yu 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
June 2018 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
June 2018 List
URL Address
<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">http://doi.org/10.18632/oncotarget.24929</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
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Advance care planning and outcome in pediatric palliative home care
Publisher
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Oncotarget
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning; home care; life sustaining treatment; medical order; palliative therapy; article; child; controlled study; death; female; hospice; human; major clinical study; male; resuscitation; retrospective study
Creator
An entity primarily responsible for making the resource
Hoell JI; Weber HL; Balzer S; Danneberg M; Gagnon G; Trocan L; Borkhardt A; Janssen G; Kuhlen M
Description
An account of the resource
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.24929</a>
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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
Advance Care Planning
Article
Balzer S
Borkhardt A
Child
Controlled Study
Danneberg M
Death
Female
Gagnon G
Hoell JI
Home Care
Hospice
Human
Janßen G
June 2018 List
Kuhlen M
Life Sustaining Treatment
Major Clinical Study
Male
medical order
Oncotarget
Palliative Therapy
Resuscitation
Retrospective Study
Trocan L
Weber HL
-
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
July 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.24490" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.24490</a>
Dublin Core
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Title
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When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
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Wiener L; Zadeh S; Wexler LH; Pao M
Identifier
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<a href="http://doi.org/10.1002/pbc.24490" target="_blank" rel="noreferrer noopener">10.1002/pbc.24490</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for themselves [1], providers feeling unprepared or without adequate skills to guide EoL discussions, or parental concern that discussing plans, including life support options or presenting an EoL planning document may send the message that the medical team wishes to withdraw care or that death is imminent. Data suggest that allowing AYA involvement in EoL planning can help parents and healthcare providers make informed decisions, alleviate distress, avoid decisional regret, and perhaps improve the patient’s quality of life (QoL) by respecting their values, beliefs ,and preferences [2–4]. This commentary addresses recent progress in the field and focuses on how healthcare professionals can approach advance care planning (ACP) with AYA, involve their family members, and engage the entire health care team.
2013
Adolescent
Advance Care Planning
Family
Humans
July 2018 List
Pao M
Pediatric Blood & Cancer
Physician-patient Relations
Quality Of Life
Terminal Care
Terminal Care/px Psychology
Wexler LH
Wiener L
Young Adult
Zadeh S
-
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 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2017-314430" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2017-314430</a>
Dublin Core
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Title
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Fifteen-minute consultation: Developing an advance care plan in partnership with the child and family
Publisher
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Archives of Disease in Childhood: Education and Practice Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
palliative therapy; advance care planning; article; child; female; human; human experiment; male; writing
Creator
An entity primarily responsible for making the resource
Harrop E J; Boyce K; Beale T; Brombley K
Description
An account of the resource
An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the opportunity to talk honestly about the future allowing children and their families to retain autonomy and to influence how they are looked after. While this may represent a difficult area of practice for healthcare professionals, both staff and families appear to benefit when the process is fully informed and the child and family are actively involved. This article is enriched by the insight of two bereaved parents, who have engaged actively with the process of advance care planning. As a multidisciplinary writing team, we aim to share our experiences, in the context of recent national guidance, on the use of ACPs.Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2017-314430" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314430</a>
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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
Advance Care Planning
Archives of Disease in Childhood: Education and Practice Edition
Article
Beale T
Boyce K
Brombley K
Child
Female
Harrop E J
Human
Human Experiment
Male
Palliative Therapy
September 2018 List
writing
-
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 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12904-018-0347-8</a>
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Title
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A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Creator
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Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
Description
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Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Identifier
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<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</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
Adolescence
Advance Care Planning
Attitude Of Health Personnel
BMC Palliative Care
Child
Community -- England
Conversation
Death
Documentation
England
Family Attitudes
Hospices -- England
Hospital
Hospitals
Human
Infant
Jack BA
Knighting K
Medical Staff
Mitchell TK
Multidisciplinary Care Team
Newborn
O'Brien MR
Palliative Care
Pediatric Care -- Psychosocial Factors
Preschool
Qualitative Studies
Semi-Structured Interview
September 2018 List
Silverio SA
Terminal Care
Thematic Analysis
Time Factors
-
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Title
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November 2018 List
Text
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Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
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Title
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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
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2018
Subject
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cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
Creator
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Widger K;Wolfe J;Friedrichsdorf S;Pole JD;Brennenstuhl S;Liben S;Greenberg M;Bouffet E;Siden H;Husain A;Whitlock JA;Leyden M;Rapoport A
Description
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Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</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
Advance Care Planning
Article
Bouffet E
Brennenstuhl S
Canada
Cancer Palliative Therapy
Child
Childhood Cancer
Clinical Practice
Friedrichsdorf S
Greenberg M
Health Care Quality
health practitioner
Human
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
Medical Education
November 2018 List
Pediatrics
Pole JD
professional knowledge
Quality Of Life
Rapoport A
Self Care
Siden H
tertiary care center
Total Quality Management
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjpo-2017-000102</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
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Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Publisher
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BMJ Paediatrics Open
Date
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2017
Subject
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Advance care planning;neurologic disease;neurologist;pediatrician;Adult;article;artificial ventilation;cross-sectional study;do not resuscitate order;Family;Female;health care survey;hematologist;Human;Japan;living will;Male;Middle Aged;priority journal;prognosis;terminal care
Creator
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Yotani N;Kizawa Y;Shintaku H
Description
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Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. results In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >>1 year. conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
Identifier
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<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2017-000102</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Advance Care Planning
Article
Artificial Ventilation
BMJ Paediatrics Open
Cross-sectional Study
do not resuscitate order
Family
Female
Health Care Survey
hematologist
Human
Japan
Kizawa Y
living will
Male
Middle Aged
Neurologic Disease
neurologist
November 2018 List
Pediatrician
Priority Journal
Prognosis
Shintaku H
Terminal Care
Yotani N
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
November 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2018 List
URL Address
<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.pcc.0000537859.14793.d8</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
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A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advance care planning;decision making;Child;clinical audit;conference abstract;conversation;death;education;England;human;information retrieval;intensivist;landscape;palliative therapy
Creator
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Sidgwick P;Randle E;Petros A
Description
An account of the resource
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advance care plans (ACP). Methods Three projects included local education, regional data collection and contribution to national debate. An ACP in PICU simulation programme for clinicians in our large quaternary centre. A clinical audit to identify children with pre-existing LLCs with and without ACPs retrieved to PICU by a regional retrieval service in southeast England and who died during the admission for which they were transferred. A national review article engaging palliative care teams and intensivists in considering the current landscape for children with LLC in PICU and analysing the ACP as part of a means to improved care. Results All three projects identified significant areas for further work. The education project outcome was positive, identifying a particular need for ongoing training in handling complex conversations around death and dying. The clinical audit found that the overwhelming majority of patients with LLCs retrieved had no ACP in place. The review piece was more reflective and generated considerable debate amongst the PICU community. Conclusions ACP and end of life care planning is vital for children with LLCs, their families and those who care for them in PICU. There is significant unmet need and significant will to improve the quality of the conversations and services we offer these children and their families and to increase the numbers offered timely ACPs.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537859.14793.d8</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
Advance Care Planning
Child
Clinical Audit
conference abstract
Conversation
Death
Decision Making
Education
England
Human
information retrieval
Intensivist
landscape
November 2018 List
Palliative Therapy
Pediatric Critical Care Medicine
Petros A
Randle E
Sidgwick P