1
40
17
-
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.2006.0139" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2006.0139</a>
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Title
A name given to the resource
Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards
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
2007
Subject
The topic of the resource
Humans; Risk Assessment; Fluid Therapy; Informed Consent; International Cooperation; Parenteral Nutrition; Practice Guidelines; Neoplasms; Palliative Care/standards; Pain/drug therapy; Attitude to Death/ethnology; Terminal Care/standards; Hypnotics and Sedatives/administration & dosage/classification/therapeutic use
Creator
An entity primarily responsible for making the resource
de Graeff A; Dean M
Description
An account of the resource
PURPOSE: Palliative sedation therapy (PST) is a controversial issue. There is a need for internationally accepted definitions and standards. METHODS: A systematic review of the literature was performed by an international panel of 29 palliative care experts. Draft papers were written on various topics concerning PST. This paper is a summary of the individual papers, written after two meetings and extensive e-mail discussions. RESULTS: PST is defined as the use of specific sedative medications to relieve intolerable suffering from refractory symptoms by a reduction in patient consciousness, using appropriate drugs carefully titrated to the cessation of symptoms. The initial dose of sedatives should usually be small enough to maintain the patients' ability to communicate periodically. The team looking after the patient should have enough expertise and experience to judge the symptom as refractory. Advice from palliative care specialists is strongly recommended before initiating PST. In the case of continuous and deep PST, the disease should be irreversible and advanced, with death expected within hours to days. Midazolam should be considered first-line choice. The decision whether or not to withhold or withdraw hydration should be discussed separately. Hydration should be offered only if it is considered likely that the benefit will outweigh the harm. PST is distinct from euthanasia because (1) it has the intent to provide symptom relief, (2) it is a proportionate intervention, and (3) the death of the patient is not a criterion for success. PST and its outcome should be carefully monitored and documented. CONCLUSION: When other treatments fail to relieve suffering in the imminently dying patient, PST is a valid palliative care option.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2006.0139" target="_blank" rel="noreferrer">10.1089/jpm.2006.0139</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
2007
Attitude To Death/ethnology
Backlog
de Graeff A
Dean M
Fluid Therapy
Humans
Hypnotics and Sedatives/administration & dosage/classification/therapeutic use
Informed Consent
International Cooperation
Journal Article
Journal of Palliative Medicine
Neoplasms
Pain/drug Therapy
Palliative Care/standards
Parenteral Nutrition
Practice Guidelines
Risk Assessment
Terminal Care/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1155/2008/369162" target="_blank" rel="noreferrer">http://doi.org/10.1155/2008/369162</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
Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study
Publisher
An entity responsible for making the resource available
Canadian Respiratory Journal : Journal Of The Canadian Thoracic Society
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; Survival Rate; Aged; Middle Aged; Pulmonary Disease; retrospective studies; Patient Satisfaction/statistics & numerical data; Ontario/epidemiology; Terminal Care/standards; Quality of Health Care/standards; Nova Scotia/epidemiology; British Columbia/epidemiology; Alberta/epidemiology; Chronic Obstructive/mortality/therapy
Creator
An entity primarily responsible for making the resource
Rocker GM; Dodek PM; Heyland DK; Canadian Researchers at the End of Life Network
Description
An account of the resource
BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of importance and satisfaction with elements of EOL care, informational needs, decision-making preferences, obstacles to a preferred location of death, clinical outcomes, and health care use before and during an index hospital admission for patients who have advanced chronic obstructive pulmonary disease (COPD). METHODS: A questionnaire with regard to quality EOL care was administered to patients older than 55 years of age who had advanced medical disease in five Canadian teaching hospitals. RESULTS: For 118 hospitalized patients who had advanced COPD, the following items were rated as extremely important for EOL care: not being kept alive on life support when there is little hope for meaningful recovery (54.9% of respondents), symptom relief (46.6%), provision of care and health services after discharge (40.0%), trust and confidence in physicians (39.7%), and not being a burden on caregivers (39.6%). Compared with patients who had metastatic cancer, patients with COPD had lower (P<0.05) satisfaction with care, interest in information about prognosis, cardiopulmonary resuscitation or mechanical ventilation, and referral rates to palliative care, whereas use of acute care services was higher (P<0.05) for patients who had advanced COPD. CONCLUSION: Canadian patients who have advanced COPD identify several priorities for improving care. Avoidance of prolonged or unwanted life support requires more effective communication, decision making and goal setting. Patients also deserve better symptom control and postdischarge strategies to minimize perceived burdens on caregivers, emergency room visits and hospital admissions.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1155/2008/369162" target="_blank" rel="noreferrer">10.1155/2008/369162</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
Aged
Alberta/epidemiology
Backlog
British Columbia/epidemiology
Canadian Researchers at the End of Life Network
Canadian Respiratory Journal : Journal Of The Canadian Thoracic Society
Chronic Obstructive/mortality/therapy
Dodek PM
Female
Heyland DK
Humans
Journal Article
Male
Middle Aged
Nova Scotia/epidemiology
Ontario/epidemiology
Patient Satisfaction/statistics & Numerical Data
Pulmonary Disease
Quality of Health Care/standards
Retrospective Studies
Rocker GM
Survival Rate
Terminal Care/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1056/NEJMp058004" target="_blank" rel="noreferrer">http://doi.org/10.1056/NEJMp058004</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Physician-assisted suicide--Oregon and beyond
Publisher
An entity responsible for making the resource available
The New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; United States; Great Britain; Euthanasia; Oregon; Suicide; Death and Euthanasia; Active; Terminal Care/standards; Assisted/legislation & jurisprudence/statistics & numerical data; Gonzales v. Oregon; Legal Approach; Supreme Court Decisions; Terminally Ill/legislation & jurisprudence/psychology; Voluntary/legislation & jurisprudence
Creator
An entity primarily responsible for making the resource
Okie S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1056/NEJMp058004" target="_blank" rel="noreferrer">10.1056/NEJMp058004</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Active
Assisted/legislation & jurisprudence/statistics & numerical data
Backlog
Death and Euthanasia
Euthanasia
Gonzales v. Oregon
Great Britain
Humans
Journal Article
Legal Approach
Okie S
Oregon
Suicide
Supreme Court Decisions
Terminal Care/standards
Terminally Ill/legislation & jurisprudence/psychology
The New England Journal Of Medicine
United States
Voluntary/legislation & jurisprudence
-
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.2005.8.s-70" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2005.8.s-70</a>
Dublin Core
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Title
A name given to the resource
Key factors affecting dying children and their families
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
2005
Subject
The topic of the resource
Child; Humans; Professional-Family Relations; Communication; Quality of Health Care; Stress; adolescent; bereavement; decision making; Family/psychology; Palliative Care/standards; Terminal Care/standards; Psychological/etiology
Creator
An entity primarily responsible for making the resource
Hinds PS; Schum L; Baker JN; Wolfe J
Description
An account of the resource
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2005.8.s-70" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-70</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
2005
Adolescent
Backlog
Baker JN
Bereavement
Child
Communication
Decision Making
Family/psychology
Hinds PS
Humans
Journal Article
Journal of Palliative Medicine
Palliative Care/standards
Professional-family Relations
Psychological/etiology
Quality Of Health Care
Schum L
Stress
Terminal Care/standards
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/10.1200/JCO.2005.04.010" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2005.04.010</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
Parent and physician perspectives on quality of care at the end of life in children with cancer
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
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Physician-Patient Relations; Adult; Health Care Surveys; Parent-Child Relations; Communication; Pain; Odds Ratio; Quality of Health Care; quality of life; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; N.I.H.; Terminal Care/standards; Extramural; Physicians/standards
Creator
An entity primarily responsible for making the resource
Mack JW; Hilden JM; Watterson J; Moore C; Turner B; Grier HE; Weeks JC; Wolfe J
Description
An account of the resource
PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted between 1997 and 2001 of 144 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) or Children's Hospitals and Clinics of St Paul and Minneapolis, MN, between 1990 and 1999 (65% of those located and eligible) and 52 pediatric oncologists. RESULTS: In multivariable models, higher parent ratings of physician care were associated with physicians giving clear information about what to expect in the end-of-life period (odds ratio [OR] = 19.90, P = .02), communicating with care and sensitivity (OR = 7.67, P < .01), communicating directly with the child when appropriate (OR = 11.18, P < .01), and preparing the parent for circumstances surrounding the child's death (OR = 4.84, P = .03). Parent reports of the child's pain and suffering were not significant correlates of parental ratings of care (P = .93 and .35, respectively). Oncologists' ratings of care were inversely associated with the parent's report of the child's experience of pain (OR = 0.15, P = .01) and more than 10 hospital days in the last month of life (OR = 0.24, P < .01). Parent-rated communication factors were not correlates of oncologist-rated care. No association was found between parent and physician care ratings (P = .88). CONCLUSION: For parents of children who die of cancer, doctor-patient communication is the principal determinant of high-quality physician care. In contrast, physicians' care ratings depend on biomedical rather than relational aspects of care.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2005.04.010" target="_blank" rel="noreferrer">10.1200/JCO.2005.04.010</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
2005
Adolescent
Adult
Backlog
Child
Communication
Extramural
Female
Grier HE
Health Care Surveys
Hilden JM
Humans
Infant
Journal Article
Journal Of Clinical Oncology
Mack JW
Male
Moore C
N.I.H.
Newborn
Non-U.S. Gov't
Odds Ratio
Pain
Parent-child Relations
Physician-patient Relations
Physicians/standards
Preschool
Quality Of Health Care
Quality Of Life
Research Support
Terminal Care/standards
Turner B
Watterson J
Weeks JC
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/10.1300/j457v01n01_06" target="_blank" rel="noreferrer">http://doi.org/10.1300/j457v01n01_06</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
Social work competencies in palliative and end-of-life care
Publisher
An entity responsible for making the resource available
Journal of Social Work in End-of-Life & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Interdisciplinary Communication; Attitude; Clinical Competence; Information Dissemination; Social Work; Practice; Attitudes; Health Knowledge; Palliative Care/standards; Terminal Care/standards; Educational Measurement/standards; Patient Care Planning/standards
Creator
An entity primarily responsible for making the resource
Gwyther LP; Altilio T; Blacker S; Christ G; Csikai EL; Hooyman N; Kramer B; Linton J; Raymer M; Howe J
Description
An account of the resource
Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1300/j457v01n01_06" target="_blank" rel="noreferrer">10.1300/j457v01n01_06</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
2005
Altilio T
Attitude
Attitudes
Backlog
Blacker S
Christ G
Clinical Competence
Csikai EL
Educational Measurement/standards
Gwyther LP
Health Knowledge
Hooyman N
Howe J
Humans
Information Dissemination
Interdisciplinary Communication
Journal Article
Journal of Social Work in End-of-Life & Palliative Care
Kramer B
Linton J
Palliative Care/standards
Patient Care Planning/standards
Practice
Raymer M
Social Work
Terminal Care/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">http://doi.org/10.1038/sj.jp.7210687</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
Creation of a neonatal end-of-life palliative care protocol
Publisher
An entity responsible for making the resource available
Journal Of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; infant; United States; Questionnaires; Professional-Family Relations; Euthanasia; Clinical Protocols; Delphi Technique; Counseling; Internet; Tissue and Organ Procurement; Non-U.S. Gov't; Research Support; Newborn; empathy; Palliative Care/standards; social support; Terminal Care/standards; Culture; Family/ethnology/psychology; Neonatology/standards; Passive/psychology; Ventilator Weaning
Creator
An entity primarily responsible for making the resource
Catlin A; Carter B
Description
An account of the resource
OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological support. STUDY DESIGN: Using Internet e-mail, a Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build a consensus document. Institutional review was granted and respondents gave consent. Recruitment was conducted at medical, ethics, nursing, and multidisciplinary organization meetings. Synthesis of 16 palliative care/end-of-life protocols developed by regional, institutional, and parent organizations was included. Participants from 93 locations in the US and 4 abroad gave feedback to 13 questions derived from clinical experience and the literature. The data underwent four rounds of analysis with 95% retention of the 101 participants over an 18-month period. RESULTS/CONCLUSION: Specific consensus-based recommendations are presented with a description of palliative care; categories of candidates; planning and education needed to begin palliative care services; relationships between community and tertiary centers; components of optimally supported neonatal death; family care, including cultural, spiritual, and practical needs; ventilator withdrawal, including pain and symptom management; recommendations when death does not occur after cessation of life-extending interventions; family follow-up care; and necessary ongoing staff support.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">10.1038/sj.jp.7210687</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
2002
Backlog
Carter B
Catlin A
Clinical Protocols
Counseling
Culture
Delphi Technique
Empathy
Euthanasia
Family/ethnology/psychology
Humans
Infant
Internet
Journal Article
Journal Of Perinatology
Neonatology/standards
Newborn
Non-U.S. Gov't
Palliative Care/standards
Passive/psychology
Professional-family Relations
Questionnaires
Research Support
Social Support
Terminal Care/standards
Tissue and Organ Procurement
United States
Ventilator Weaning
-
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.2004.7.754" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2004.7.754</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 content in treatment guidelines for life-limiting diseases
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
2004
Subject
The topic of the resource
Humans; United States; Non-U.S. Gov't; Research Support; Palliative Care/standards; Chronic Disease/therapy; Disease Management; Terminal Care/standards; Hospice Care/standards; Practice Guidelines/standards
Creator
An entity primarily responsible for making the resource
Mast KR; Salama M; Silverman GK; Arnold RM
Description
An account of the resource
BACKGROUND: Clinical guidelines are systematically developed statements that influence medical practice, education, and funding. Guidelines represent the consensus of leaders, often based on systematic reviews of the literature, regarding the "state of the art." OBJECTIVE: To assess the degree to which end-of-life care is integrated into nationally developed guidelines for chronic, noncurable, life-limiting diseases. DESIGN: Four compendia were reviewed: The Healthcare Standards Directory ECRI, 2001; the Clinical Practice Guidelines Directory, 2000 edition; the National Guidelines Clearinghouse, (guideline.gov); and the National Library of Medicine's MEDLINE database on the OVID platform for guidelines on nine chronic diseases (chronic obstructive pulmonary disease, end-stage liver disease, amyotrophic lateral sclerosis, congestive heart failure, dementia, cerebrovascular accident, end-stage renal disease, cancer [breast, colon, prostate, lung], and human immunodeficiency virus). They were assessed by two reviewers for end-of-life content in 15 domains (e.g., epidemiology of death, symptom management, spiritual, family roles, and settings of care), the presence of eight specific terms dealing with palliative care, integration of palliative care information into the guideline, and descriptive variables. SETTING/SUBJECTS: Not available. MEASUREMENTS: Each guideline was examined and rated on a 0-2 scale (0, absent content; 1, minimal content; 2, helpful content) using 15 end-of-life content domains. Scores from domains were summed and classified into 3 categories: 4 or less, minimal; 5-12, moderate; and more than 12, significant content. Results: Ten percent of guidelines had significant palliative care content, 64% had minimal content, and 26% had moderate content. The least addressed domains dealt with spirituality, ethics, advocacy and family roles. When guidelines that dealt solely with prevention, acute exacerbations or complications of an illness, or specific treatment modalities were excluded 28% and 16% of these general guidelines (n = 58) had moderate and significant palliative care content, respectively, compared to 24% and 0% of all nongeneral guidelines. Similar results were found when analyzing the data by disease course or treatment focus. Only 14% of guidelines advised physicians to consider palliative care at a specific point in the disease course. Ninety-one percent of the guidelines mentioned death, dying, end of life, mortality, or terminal illness but only 36% mentioned palliation or hospice. CONCLUSION: Current national guidelines on nine chronic, life-limiting illnesses offer little guidance in end-of-life care issues despite a recent increase in attention to this aspect of medical care.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2004.7.754" target="_blank" rel="noreferrer">10.1089/jpm.2004.7.754</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
2004
Arnold RM
Backlog
Chronic Disease/therapy
Disease Management
Hospice Care/standards
Humans
Journal Article
Journal of Palliative Medicine
Mast KR
Non-U.S. Gov't
Palliative Care/standards
Practice Guidelines/standards
Research Support
Salama M
Silverman GK
Terminal Care/standards
United States
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-6939-3-3</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
Consensus guidelines on analgesia and sedation in dying intensive care unit patients
Publisher
An entity responsible for making the resource available
Bmc Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; Intensive Care Units; Terminally Ill; Consensus; Euthanasia; Suicide; Stress; Empirical Approach; Death and Euthanasia; Practice Guidelines; Pain/drug therapy; Active; Hypnotics and Sedatives/therapeutic use; Assisted; Terminal Care/standards; Psychological/drug therapy; Analgesics/therapeutic use; Palliative Care/methods/standards
Creator
An entity primarily responsible for making the resource
Hawryluck LA; Harvey WR; Lemieux-Charles L; Singer PA
Description
An account of the resource
BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. METHODS: Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). RESULTS: After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. CONCLUSION: Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">10.1186/1472-6939-3-3</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
2002
Active
Analgesics/therapeutic use
Assisted
Backlog
Bmc Medical Ethics
Consensus
Death and Euthanasia
Empirical Approach
Euthanasia
Harvey WR
Hawryluck LA
Humans
Hypnotics and Sedatives/therapeutic use
Intensive Care Units
Journal Article
Lemieux-Charles L
Pain/drug Therapy
Palliative Care/methods/standards
Practice Guidelines
Psychological/drug therapy
Singer PA
Stress
Suicide
Terminal Care/standards
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12243689" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12243689</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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Raising the standard of care for imminently dying patients using quality improvement
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
2002
Subject
The topic of the resource
Pilot Projects; Program Development; Program Evaluation; Critical Pathways; Non-U.S. Gov't; Human; Support; Terminal Care/standards; Total Quality Management
Creator
An entity primarily responsible for making the resource
Bookbinder M; Romer AL
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
2002
2002
Backlog
Bookbinder M
Critical Pathways
Human
Journal Article
Journal of Palliative Medicine
Non-U.S. Gov't
Pilot Projects
Program Development
Program Evaluation
Romer AL
Support
Terminal Care/standards
Total Quality Management
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1136/bmj.289.6459.1665" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.289.6459.1665</a>
Dublin Core
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Title
A name given to the resource
Helen House--a hospice for children: analysis of the first year
Publisher
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British Medical Journal (clinical Research Ed.)
Date
A point or period of time associated with an event in the lifecycle of the resource
1984
Subject
The topic of the resource
Child; Female; Humans; Male; England; Quality of Health Care; Family Health; Patient Admission; adolescent; Terminal Care/standards; Canuck Place 15 year chart review; Cerebellar Neoplasms/therapy; Hospices/organization & administration; Medulloblastoma/therapy; Neuronal Ceroid-Lipofuscinoses/therapy
Creator
An entity primarily responsible for making the resource
Burne SR; Dominica F; Baum JD
Description
An account of the resource
Helen House, a hospice for children, opened in Oxford in November 1982. From then until December 1983 care was provided for 52 children with terminal illness, progressive and incurable illness, and very severe handicap. The children came from a wide area of the United Kingdom, and eight died during the year. The style of care provided in Helen House is based on that of the families in their own homes, with a minimum of rules, regulations, and routines. Terminal care follows the principles developed by hospices experienced in the care of adults. Despite the great sadness and distress associated with every child admitted, Helen House is neither a sombre nor a depressing place.
1984
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.289.6459.1665" target="_blank" rel="noreferrer">10.1136/bmj.289.6459.1665</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
1984
Adolescent
Backlog
Baum JD
British Medical Journal (clinical Research Ed.)
Burne SR
Canuck Place 15 year chart review
Cerebellar Neoplasms/therapy
Child
Dominica F
England
Family Health
Female
Hospices/organization & administration
Humans
Journal Article
Male
Medulloblastoma/therapy
Neuronal Ceroid-Lipofuscinoses/therapy
Patient Admission
Quality Of Health Care
Terminal Care/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/s0885-3924(98)00133-x" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(98)00133-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
Methodological challenges for measuring quality of care at the end of life
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
1999
Subject
The topic of the resource
Humans; Research Design; Quality of Life/psychology; Quality Assurance; Terminal Care/standards; Health Care/methods; Health Care/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Fowler FJ; Coppola KM; Teno JM
Description
An account of the resource
Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient’s death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(98)00133-x" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00133-x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1999
Backlog
Coppola KM
Fowler FJ
Health Care/methods
Health Care/statistics & numerical data
Humans
Journal Article
Journal of Pain and Symptom Management
Quality Assurance
Quality Of Life/psychology
Research Design
Teno JM
Terminal Care/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10678857" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10678857</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
Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study
Publisher
An entity responsible for making the resource available
Bmj
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Male; Survival Rate; Cohort Studies; Prognosis; Prospective Studies; Non-U.S. Gov't; Human; Support; Terminally Ill; Clinical Competence/standards; Medical Errors/statistics & numerical data; Terminal Care/standards
Creator
An entity primarily responsible for making the resource
Christakis NA; Lamont EB
Description
An account of the resource
OBJECTIVE: To describe doctors' prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. DESIGN: Prospective cohort study. SETTING: Five outpatient hospice programmes in Chicago. PARTICIPANTS: 343 doctors provided survival estimates for 468 terminally ill patients at the time of hospice referral. MAIN OUTCOME MEASURES: Patients' estimated and actual survival. RESULTS: Median survival was 24 days. Only 20% (92/468) of predictions were accurate (within 33% of actual survival); 63% (295/468) were overoptimistic and 17% (81/468) were overpessimistic. Overall, doctors overestimated survival by a factor of 5.3. Few patient or doctor characteristics were associated with prognostic accuracy. Male patients were 58% less likely to have overpessimistic predictions. Non-oncology medical specialists were 326% more likely than general internists to make overpessimistic predictions. Doctors in the upper quartile of practice experience were the most accurate. As duration of doctor-patient relationship increased and time since last contact decreased, prognostic accuracy decreased. CONCLUSION: Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic. The inaccuracy is, in general, not restricted to certain kinds of doctors or patients. These phenomena may be adversely affecting the quality of care given to patients near the end of life.
2000
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2000
Backlog
Bmj
Christakis NA
Clinical Competence/standards
Cohort Studies
Human
Journal Article
Lamont EB
Male
Medical Errors/statistics & numerical data
Non-U.S. Gov't
Prognosis
Prospective Studies
Support
Survival Rate
Terminal Care/standards
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=1373053" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=1373053</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
Terminal dehydration, a compassionate treatment
Publisher
An entity responsible for making the resource available
Archives Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1992
Subject
The topic of the resource
Female; Male; Palliative Care; Adult; Aged; Fluid Therapy; Enteral Nutrition; Parenteral Nutrition; 80 and over; Psychological; Human; Case Report; Withholding Treatment; Terminal Care/standards; Risk Assessment; Stress
Creator
An entity primarily responsible for making the resource
Printz LA
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
1992
1992
80 And Over
Adult
Aged
Archives Of Internal Medicine
Backlog
Case Report
Enteral Nutrition
Female
Fluid Therapy
Human
Journal Article
Male
Palliative Care
Parenteral Nutrition
Printz LA
Psychological
Risk Assessment
Stress
Terminal Care/standards
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/j.jamda.2010.02.011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jamda.2010.02.011</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
Evaluation of a Continuous Quality Improvement Initiative for End-Of-Life Care for Older Noncancer Patients
Publisher
An entity responsible for making the resource available
Journal of the American Medical Directors Association
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; Questionnaires; Aged; Total Quality Management; 80 and over; Hong Kong; Terminal Care/standards
Creator
An entity primarily responsible for making the resource
Woo J; Cheng JO; Lee J; Lo R; Hui E; Lum CM; Or KH; Yeung F; Wong F; Mak B
Description
An account of the resource
OBJECTIVES: The burden of suffering among patients with end-stage chronic diseases may be greater than those of cancer patients, as a result of longer duration of illness trajectory and high prevalence of symptoms, yet they may be less likely to receive palliative care services. To improve the quality of care of these patients, we carried out a continuous quality improvement initiative among medical and nursing staff of a convalescent facility. DESIGN: Evaluation of a quality improvement initiative. SETTING: Nonacute institution in Hong Kong SAR, China. PARTICIPANTS: The participants were patients with advanced chronic diseases not opting for active treatment. INTERVENTION: The intervention was a continuous quality improvement process carried out over a 3-month period, consisting of service reengineering, provision of guidelines and educational material, and interactive sessions to achieve culture change among staff. Evaluation before and after the intervention included patient symptoms checklist and quality-of-life measures for patients; quality-of-life and cost-of-care index for family members; quality-of-life and carer burden for staff; and use of various health care services. RESULTS: There were 80 and 89 participants in the pre- and post-intervention phase. The initiative resulted in shorter duration of stay, fewer investigations, fewer transfers back to the affiliated acute care hospital, and more follow-up by the outreach team, with no significant difference in mortality after adjusting for age and comorbidity. Symptoms of pain and cough were reduced, while there was a trend toward more constipation but less dizziness. Family members' satisfaction improved. CONCLUSIONS: It is possible to improve quality-of-life care for elderly patients with end-stage chronic diseases by staff education, and culture and system change, not only without additional resources, but likely savings were achieved in terms of reduced use of health care resources.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jamda.2010.02.011" target="_blank" rel="noreferrer noopener">10.1016/j.jamda.2010.02.011</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
80 And Over
Aged
Backlog
Cheng JO
Female
Hong Kong
Hui E
Humans
Journal Article
Journal Of The American Medical Directors Association
Lee J
Lo R
Lum CM
Mak B
Male
Or KH
Questionnaires
Terminal Care/standards
Total Quality Management
Wong F
Woo J
Yeung F
-
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 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions
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
2015
Subject
The topic of the resource
Adult;Advance Care Planning/ethics;Advance Care Planning/standards;Attitude Of Health Personnel;Australia;Child;Consumer Health Information/methods;Decision Making/ethics;Humans;Internet;Parents/education;Parents/psychology;Pilot Projects;Professional-family Relations;Publications;Terminal Care/methods;Terminal Care/standards
Creator
An entity primarily responsible for making the resource
Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D
Description
An account of the resource
BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. AIM: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. DESIGN: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. SETTING/PARTICIPANTS: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. RESULTS: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. CONCLUSIONS: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
Identifier
An unambiguous reference to the resource within a given context
10.1089/jpm.2015.0048
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).
2015
Adult
Advance Care Planning/ethics
Advance Care Planning/standards
Attitude Of Health Personnel
Australia
Child
Consumer Health Information/methods
Cossich M
Decision Making/ethics
Gillam L
Humans
Hynson J
Internet
Journal of Palliative Medicine
July 2017 List
Parents/education
Parents/psychology
Pilot Projects
Professional-family Relations
Publications
Sullivan J
Terminal Care/methods
Terminal Care/standards
Wilkinson D
Xafis V
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
When Parents Face The Death Of Their Child: A Nationwide Cross-sectional Survey Of Parental Perspectives On Their Child’s End- Of Life Care.
Publisher
An entity responsible for making the resource available
Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Attitude To Death; Cross-sectional Studies; Death; Decision Making; Female; Humans; Infant Newborn; Male; Parents/psychology; Pediatrics/standards; Perception; Resuscitation Orders/psychology; Surveys And Questionnaires; Switzerland; Terminal Care/standards
Pediatrics; End Of Life; Terminal Care; Questionnaire Survey; Parental Perspectives
Creator
An entity primarily responsible for making the resource
Zimmermann K; Bergstraesser E; Engberg S; Ramelet AS; Marfurt-Russenberger; Nicolas Von der Weid; Chantal Grandjean; Patricia Fahrni-Nater; Eva Cignacco
K; Von der Weid N
Description
An account of the resource
Background
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.
Methods
Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.
Results
Of 307 eligible families, 267 could be contacted and 135 (51 %) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child’s EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.
Conclusions
Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.
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
Attitude Of Health Personnel
Attitude To Death
Bergstraesser E
BMC Palliative Care
Chantal Grandjean
Cross-sectional Studies
Death
Decision Making
End Of Life
Engberg S
Eva Cignacco
K
Female
Humans
Infant Newborn
Male
Marfurt-Russenberger
May 2016 List
Nicolas Von der Weid
Parental Perspectives
Parents/psychology
Patricia Fahrni-Nater
Pediatrics
Pediatrics/standards
Perception
Questionnaire Survey
Ramelet AS
Resuscitation Orders/psychology
Surveys And Questionnaires
Switzerland
Terminal Care
Terminal Care/standards
Von der Weid N
Zimmermann K