When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant
Creator
Hansen K; Edwards L A; Luong R; Yohannes K; Halpern-Felsher B; Cohen H; Kaufman B
Publisher
Circulation. Conference
Date
2018
Subject
advance care planning; adolescent; death; outpatient; prognosis; school child; cancer prognosis; malignant neoplasm; heart failure; conference abstract; human; child; controlled study; perception; conversation; cardiomyopathy; heart graft
Description
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demonstrated, but the ACP preferences of adolescents with heart disease and their parents have not been evaluated. We aimed to describe and compare ACP preferences of adolescents with CMHF/HTx and their parents. Method(s): Outpatient adolescents with CMHF/HTx, aged 12-18y, and their parents completed a self-administered survey from March to May 2018. The survey evaluated preferences regarding the importance of ACP, sharing of prognostic information, and timing of ACP discussions. Participants answered independently. In addition, parents were asked their perception of their child's response. Adolescents' and parents' survey responses were compared. Survey responses were recoded as dichotomous variables and compared using McNemar's test. Result(s): Twenty-five dyads (mean adolescent age 15.0 +/- 1.8 years) completed the survey. Most adolescents (71%) considered their current health to be very good or excellent. ACP importance was ranked moderately or extremely important by 44% adolescents compared to 88% parents (p=0.006). Most adolescents (88%) reported that they wanted their doctor to inform them as soon as their doctor knew they were dying; in contrast, only 44% of parents wanted the doctor to share this information with their child (p=0.003). The majority of parents (84%) and adolescents (80%) wanted the adolescent to be involved in end-of-life (EOL) decisions. Conclusion(s): While many adolescents with CMHF/HTx did not report that ACP was of great importance, they do not want to be kept in the dark if death is near. Adolescents with CMHF/HTx reported that they want to be told as soon as the physician knows they are going to die and want to be involved in EOL decisions. Parents want their adolescent to be involved in EOL decisions, but are less likely to want to share a terminal prognosis with the adolescent. These results highlight discrepancies between adolescent and parent views regarding EOL conversations. More research is needed to inform effective EOL communication between parent, adolescent, and provider.
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
2009
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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).
BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of deceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif. METHODS: Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up. Four clinical social workers and one clinical psychologist reviewed the participants' responses and identified frequently occurring themes. RESULTS: Several areas of unsatisfactory interactions with staff were identified: confusing, inadequate, or uncaring communications regarding treatment or prognosis; preventable oversights in procedures or policies; failure to include or meet the needs of siblings and Spanish-speaking family members; and inconsistent bereavement follow-up. A discrepancy emerged between the high degree of pain described by the families and parents' perceptions that pain had been managed well. Community hospice programs are frequently poorly prepared to serve pediatric patients. CONCLUSIONS: There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.
2002
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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).
CONTEXT: Despite advances in therapies, many pediatric heart transplant (Htx) recipients will die prematurely. We characterized the circumstances surrounding death in this cohort, including location of death and interventions performed in the final 24 hours. METHODS: We reviewed all patients who underwent Htx at Lucile Packard Children's Hospital, Stanford, survived hospital discharge, and subsequently died between 7/19/2007-9/13/2015. The primary outcome studied was location of death, characterized as inpatient, outpatient, or emergency department (ED). Circumstances of death (withdrawal of life-sustaining treatment, death during resuscitation, or death without resuscitation with/without DNR) and interventions performed in the last 24 hours of life were also analyzed. RESULTS: 23 patients met entry criteria. The median age at death was 12 (range: 2-20) years, and the median time between transplant and death was 2.8 (range: 0.8-11) years. Four (17%) died at home, 3 (13%) in the ED. Sixteen (70%) patients died in the hospital, 14/16 (88%) of whom died in an intensive care unit (ICU). 5/23 (22%) experienced attempted resuscitation. Interventions performed in the last 24 hours of life included intubation (74%), mechanical support (30%), and dialysis (22%). Most patients had a recent outpatient clinical encounter with normal graft function within 60 days of dying. CONCLUSIONS/LESSONS LEARNED: Death in children following Htx often occurs in the inpatient setting, particularly the ICU. Medical interventions, including attempted resuscitation, are common at the end of life. Given the difficulty in anticipating life-threatening events, earlier discussions with patients regarding end-of-life wishes are appropriate, even in those with normal graft function.
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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).
Place Of Death Of Children With Complex Chronic Conditions: Cross-national Study Of 11 Countries
Creator
Hakanson C; Ohlen J; Kreicbergs U; Cardenas-Turanzas M; Wilson DM; Loucka M; Frache S; Giovannetti L; Naylor W; Rhee Y; Ramos MR; Teno J; Beernaert K; Deliens L; Houttekier D; Cohen H
Identifier
10.1007/s00431-016-2837-0
Publisher
European Journal Of Pediatrics
Date
2017
Subject
Cause Of Death; Palliative Therapy; Adolescent; Belgium; Cancer Epidemiology; Child; Controlled Study; Cultural Value; Death Certificate; Female; Girl; Human; Logistic Regression Analysis; Major Clinical Study; Male; Malignant Neoplastic Disease; Mexico; Neuromuscular Disease; South Korea; Sweden
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).
Providing Pediatric Palliative Care Education Using Problem-based Learning
Creator
Moody K; McHugh M; Baker R; Cohen H; Pinto P; Deutsch S; Santizo R O; Schechter M; Fausto J; Joo P
Identifier
10.1089/jpm.2017.0154
Publisher
Journal Of Palliative Medicine
Date
2017
Subject
Curriculum; Medical; Palliative Care; Pediatrics; Problem-based Learning; Students
Description
BACKGROUND: The Institute of Medicine and the American Academy of Pediatrics has called for improvement in education and training of pediatricians in pediatric palliative care (PPC). Given the shortage of PPC physicians and the immediate need for PPC medical education, this study reports the outcomes of a problem-based learning (PBL) module facilitated by academic general and subspecialty pediatric faculty (non-PPC specialists) to third year medical students. Objectives/Setting: To test the effectiveness of a PPC-PBL module on third year medical students' and pediatric faculty's declarative knowledge, attitudes toward, perceived exposure, and self-assessed competency in PPC objectives. DESIGN: A PBL module was developed using three PPC learning objectives as a framework: define core concepts in palliative care; list the components of a total pain assessment; and describe key principles in establishing therapeutic relationships with patients. A PPC physician and nurse practitioner guided pediatric faculty on facilitating the PPC-PBL. In Part 1, students identified domains of palliative care for a child with refractory leukemia and self-assigned questions to research and present at the follow-up session. In Part 2, students were expected to develop a care plan demonstrating the three PPC objectives. MEASUREMENTS: Measures included a knowledge exam and a survey instrument to assess secondary outcomes. RESULTS: Students' declarative knowledge, perceived exposure, and self-assessed competency in all three PPC learning objectives improved significantly after the PPC-PBL, p = 0.002, p < 0.001, and p < 0.001, respectively. There were no significant differences in faculty knowledge test scores from baseline to follow-up, but scores were generally high (median >80%). Students and faculty rated palliative care education as "important or very important" at baseline and follow-up. CONCLUSIONS: This study suggests that key concepts in PPC can be taught to medical students utilizing a PBL format and pediatric faculty resulting in improved knowledge and self-assessed competency in PPC.
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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).
Citation List Month
October 2017 List
Notes
1557-7740 Moody, Karen McHugh, Marlene Baker, Rebecca Cohen, Hillel Pinto, Priya Deutsch, Stephanie Santizo, Ruth O Schechter, Miriam Fausto, James Joo, Pablo Journal Article United States J Palliat Med. 2017 Aug 2. doi: 10.1089/jpm.2017.0154.
Training Pediatric Fellows In Palliative Care: A Comparison Of Simulation-based Training And Didactic Education
Creator
Brock K; Cohen H; Sourkes B; Good J; Halamek L
Identifier
10.1002/pbc.26591
Publisher
Pediatric Blood And Cancer
Date
2017
Subject
Curriculum; Palliative Therapy; Simulation; Cardiology; Child; Clinical Trial; Comfort; Communication Skill; Controlled Clinical Trial; Controlled Study; Family; Female; Hematology; Human; Human Versus Animal Comparison; Male; Medical Education; Neonatology; Nonhuman; Oncology; Physician; Pilot Study; Resuscitation; Single Blind Procedure
Description
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and recommendations from professional societies, most fellowship programs either lack formal training or provide only lecture-based PC education. Simulation-based training has been successful in other high-stakes communication encounters, and has the potential to change PC education. Objectives: In this pilot study,we assessed: (1) the relative effectiveness of simulation-based vs didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. Design/Method: Thirty-five pediatric fellows in hematology/oncology, cardiology, critical care, and neonatology at two institutions enrolled: 17 in the simulation-based group (single institution) and 18 in the didactic education group (second institution). Simulation-based subjects participated in a 2-day program over 3 months (three simulations and videotaped PC panel) where scenarios focused on: introducing PC, discussing goals of care and resuscitation preferences, and mediating disagreement between the family and medical team. Didactic-education subjects received written education designed to be similar in content and time. (1) Fellow selfassessments in PC comfort, knowledge, and adequacy of medical education, were measured at baseline, post-intervention and three months; mean between-group differences for each outcome measure were assessed. (2) Two blinded external reviewers rated each simulation-group fellow's encounters on nine communication domains. Within-group changes over time were assessed. (3) The simulation-based site's PC consultation rate was compared in the six months pre- and post-intervention. Results: Compared to the didactic group, subjects in the simulation-based group improved in PC comfort/ self-efficacy (16.4 vs 6.1, DELTA10.3, p = 0.003) and perceived adequacy of medical education (7.4 vs 0.4, DELTA7.1, p<0.001). Both groups had improved PC knowledge; this was not different between groups (1.1 vs 1.8, DELTA-0.7, p = 0.20). Reviewers noted non-sustained improvement in four domains: relationship building (p = 0.01), opening discussion (p = 0.03), gathering information (p = 0.01), and communicating accurate information (p = 0.04). PC consultation rate increased 64%, an improvement when normalized to average daily census (p = 0.04). Simulation-group fellows more strongly agreed that they would use the education in practice (p = 0.04), and recommended that educational methodology (p = 0.004). Conclusion: Well-trained physicians are necessary to providing high quality PC. This simulation-based curriculum is an effective method for improving PC comfort, education, and consults, although it does not lead to sustained improvements in communication competence or knowledge. More frequent, deliberate practice is likely needed to lead to sustained improvements in communication competence.
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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).
Pediatrics; Expert Consensus Statement; Destination Therapy; End Of Life Care; Respiratory System; Advanced Heart-disease; Implantable Electronic Devices; Mechanical Circulatory Support; Transplantation; Mechanical Support; Cardiac & Cardiovascular Systems; United States; Patients Nearing End; Quality Of Life; Palliative Care; Surgery; Ventricular Assist; Requesting Withdrawal; Sustaining Treatment
Mechanical Support; Palliative Care; Pediatrics; Quality Of Life; Ventricular Assist
Description
Despite greatly improved survival in pediatric patients with end-stage heart failure through the use of ventricular assist devices (VADs), heart failure ultimately remains a life-threatening disease with a significant symptom burden. With increased demand for donor organs, liberalizing the boundaries of case complexity, and the introduction of destination therapy in children, more children can be expected to die while on mechanical support. Despite this trend, guidelines on the ethical and pragmatic issues of compassionate deactivation of VAD support in children are strikingly absent. As VAD support for pediatric patients increases in frequency, the pediatric heart failure and palliative care communities must work toward establishing guidelines to clarify the complex issues surrounding compassionate deactivation. Patient, family and clinician attitudes must be ascertained and education regarding the psychological, legal and ethical issues should be provided. Furthermore, pediatric-specific planning documents for use before VAD implantation as well as deactivation checklists should be developed to assist with decision-making at critical points during the illness trajectory. Herein we review the relevant literature regarding compassionate deactivation with a specific focus on issues related to children.
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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).
Citation List Month
May 2016 List
]]>https://pedpalascnetlibrary.omeka.net/items/show/10570
Describe different methods of palliative care education,
including simulation-based education and
didactic education.
Delineate differences between pediatric fellow
self-assessment data and external reviewer data
of fellow performance.
Describe how a simulation-based curriculum can
lead to changes in palliative care consultation at
an institution.
Original Research Background. Although palliative
care (PC) skills can be learned ‘‘on the job,’’ pediatric
trainees have few opportunities and often receive no
formal PC education.
Research Objectives. (1) To assess whether simulation-based
or didactic education is a more effective
method for teaching PC communication. (2) To assess
competence over time. (3) To determine if PC consultation
rates would increase after simulation-based
education.
Methods. (1) 35 pediatric fellows from cardiology, critical
care, oncology and neonatology at two institutions
enrolled 17 in the intervention group (IG) and 18 in
the control group (CG). IG fellows participated in a 2-
day intervention over three months consisting of three
simulation scenarios with debriefing and a videotaped
PC lecture. CG fellows received written PC education
designed to be similar in content and time. Assessments
were measured at baseline, post-intervention and at
three months; mean differences for each outcome measure
were assessed. (2) External reviewers rated IG encounters
on nine communication competencies.
Changes over time were assessed. (3) PC consultations
from the IG institution’s four departments were
compared in the six months pre- and post-intervention,
normalized to inpatient admissions and hospital days.
Results. Over three months, IG fellows significantly
improved in self-efficacy (p¼0.003) and perceived adequacy
of medical education (p<0.001), but not
knowledge (p¼0.20) when compared to CG fellows.
External reviewers noted improvement in three
competencies (relationship building (p¼0.04), opening
discussion (p¼0.01), gathering information
(p¼0.01)). There was a 65% increase in PC consultation
rate, but no difference when normalized to inpatient
admissions or hospital days (OR 1.5, 95% CI
0.9-2.5 for both). IG fellows more strongly agreed
that they would use (p¼0.04) and recommended
(p¼0.004).the education.
Vol. 51 No. 2 February 2016 Schedule with Abstracts 323
Conclusion. Our simulation-based curriculum is an
effective method for teaching PC communication to
pediatric fellows compared with a didactic education
model.]]>2023-02-23T17:20:39-05:00
Title
Improving Training In Palliative Care For Pediatric Fellows -- A Simulation-based Multi-institution Trial.
Objectives
Describe different methods of palliative care education,
including simulation-based education and
didactic education.
Delineate differences between pediatric fellow
self-assessment data and external reviewer data
of fellow performance.
Describe how a simulation-based curriculum can
lead to changes in palliative care consultation at
an institution.
Original Research Background. Although palliative
care (PC) skills can be learned ‘‘on the job,’’ pediatric
trainees have few opportunities and often receive no
formal PC education.
Research Objectives. (1) To assess whether simulation-based
or didactic education is a more effective
method for teaching PC communication. (2) To assess
competence over time. (3) To determine if PC consultation
rates would increase after simulation-based
education.
Methods. (1) 35 pediatric fellows from cardiology, critical
care, oncology and neonatology at two institutions
enrolled 17 in the intervention group (IG) and 18 in
the control group (CG). IG fellows participated in a 2-
day intervention over three months consisting of three
simulation scenarios with debriefing and a videotaped
PC lecture. CG fellows received written PC education
designed to be similar in content and time. Assessments
were measured at baseline, post-intervention and at
three months; mean differences for each outcome measure
were assessed. (2) External reviewers rated IG encounters
on nine communication competencies.
Changes over time were assessed. (3) PC consultations
from the IG institution’s four departments were
compared in the six months pre- and post-intervention,
normalized to inpatient admissions and hospital days.
Results. Over three months, IG fellows significantly
improved in self-efficacy (p¼0.003) and perceived adequacy
of medical education (p<0.001), but not
knowledge (p¼0.20) when compared to CG fellows.
External reviewers noted improvement in three
competencies (relationship building (p¼0.04), opening
discussion (p¼0.01), gathering information
(p¼0.01)). There was a 65% increase in PC consultation
rate, but no difference when normalized to inpatient
admissions or hospital days (OR 1.5, 95% CI
0.9-2.5 for both). IG fellows more strongly agreed
that they would use (p¼0.04) and recommended
(p¼0.004).the education.
Vol. 51 No. 2 February 2016 Schedule with Abstracts 323
Conclusion. Our simulation-based curriculum is an
effective method for teaching PC communication to
pediatric fellows compared with a didactic education
model.
Rights
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).