What impedes timely pediatric palliative care consults? A preliminary report
child; conference abstract; education; female; human; major clinical study; male; medical staff; narrative; nurse; Palliative therapy; pediatric patient; quality of life; responsibility; terminal care
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient and family. Studies have shown that despite the benefits of PPC, many patients do not benefit from timely consultation (Morita et al.). Little, however, is known about the reasons for this. Objective: The purpose of this QI project was to identify barriers to PPC to inform an intervention aimed at increasing timely consultations at our hospital. Methods: Our team surveyed members of the inter-professional healthcare team as well as patients/families to assess attitudes, knowledge, and barriers related to PPC. In addition, parents gave narrative feedback at a hospital parent advisory board meeting. Results: Survey of healthcare workers (n = 243) showed that nurses had the smallest percentage of very favorable opinions toward PPC (64%), with the NICU (65%) and the ED (57%) as the units reporting lowest in that category. Nurses also had the lowest percentage of “good” or “excellent” understanding of PPC (27%), with the NICU (29%) and the ED (29%) again reporting lowest in that category. Attitude was positively correlated with knowledge (figure 1): 93% of respondents who rated their understanding as excellent had a very favorable opinion of PPC. The top barriers to PPC consultation were not knowing whose responsibility it was to order a consultation (24%) and worry about undermining parental hope (19%). More than half (68%) of respondents indicated that they ask permission of the patient/family before ordering a PPC consultation. Respondents reported that PPC consultations generally occurred when curative interventions were no longer possible (37%) and during end-of-life care (24%). Survey of patients/families (n = 33) showed that only 30% had a confident understanding of PPC services and 55% had received information regarding PPC from medical staff. Seventy percent had a favorable view of PPC while 21% needed more information to form an opinion. Comments from the parent advisory board indicated that lack of information regarding PPC is the major barrier for PPC utilization for patients/families. Conclusions and future directions: These results indicate that attitudes toward PPC and lack of education regarding PPC are the most common barriers to timely PPC consultations. As well, lack of information is likely a major contributing factor to unfavorable attitudes. Our intervention will aim to improve knowledge about and thus attitudes toward PPC. With each intervention we will complete a Plan-Do-Study-Act (PDSA) cycle and evaluate its success in increasing timely PPC consultations, with the ultimate goal of improving quality of life and goal-oriented care for our pediatric patients.
Marell P; Gupta S; Goloff N; Sherva K
Pediatrics
2019
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).
Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
communication; neonatology; parental perspectives; parents; resuscitation
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives. METHODS: Clinicians from different backgrounds participated in a standardized, videotaped, simulated neonatal resuscitation in the presence of parent actors. The infant remained pulseless; participants communicated with the parent actors before, during, and after discontinuing resuscitation. Twenty-one evaluators with varying expertise (including 6 bereaved parents) viewed the videos. They were asked to score clinician-parent communication and identify the top communicators. In open-ended questions, they were asked to describe 3 aspects that were well done and 3 that were not. Answers to open-ended questions were coded for easily reproducible behaviors. All the videos were then independently reviewed to evaluate whether these behaviors were present. RESULTS: Thirty-one participants' videos were examined by 21 evaluators (651 evaluations). Parents and actors agreed with clinicians 81% of the time about what constituted optimal communication. Good communicators were more likely to introduce themselves, use the infant's name, acknowledge parental presence, prepare the parents (for the resuscitation, then death), stop resuscitation without asking parents, clearly mention death, provide or enable proximity (clinician-parent, infant-parent, clinician-infant, mother-father), sit down, decrease guilt, permit silence, and have knowledge about procedures after death. Consistently, clinicians who displayed such behaviors had evaluations >9 out of 10 and were all ranked top 10 communicators. CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication.
Lizotte M H; Barrington K J; Sultan S; Pennaforte T; Moussa A; Lachance C; Sureau M; Zao Y; Janvier A
Pediatrics
2020
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).
<a href="http://doi.org/10.1542/peds.2019-1925" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-1925</a>
Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Pediatrics
2019
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).
Simulation and skills training for pediatric fellows: Improving confidence in high-stakes care at end of life
child; clinical article; conference abstract; controlled study; female; hematology; human; male; pain; resuscitation; simulation; skill; teaching; terminal care
Background: End-of-life (EOL) care for a child is a high-stakes situation that requires careful planning and practice; there is only one chance to get it right. Additionally, distress is often high in those caring for dying children. Despite the fact that treating patients with life-threatening illnesses necessitates providing EOL care at some point, formal training and skills practice is not a routine part of pediatric subspecialty training. In contrast, resuscitation - another high-stakes situation - is a skill that is nearly always required for staff. Despite the clear need for good care at EOL, it is generally not recognized that there are distinct EOL skills that need deliberate training and practice. Simulation and skills-based training, similar to that used for resuscitation, can provide opportunities to learn and practice skills in a safe, controlled environment to equip the trainee for the real situation. Purpose: The objective of this study was to evaluate whether a half-day simulation and skills-based workshop was feasible, desirable and could improve perceived confidence of specific EOL skills of pediatric subspecialty fellows. Methods: Hematology-oncology, PICU and NICU fellows at a Midwest academic children’s hospital (n=19) in all years of training were invited to participate in a half-day EOL workshop. Pre-intervention anonymous knowledge and confidence surveys were given to fellows at the beginning of the workshop. The educational intervention consisted of a pre-briefing introduction, 2 immersive simulations done as a team, and an EOL skills station. There was a short debrief after each immersive simulation, and the day concluded with a formal debriefing as a large group. A post-intervention confidence survey was given to fellows at the immediate conclusion of the workshop. Results: All participating fellows (n=17) completed the workshop and surveys. While 82% reported having had ‘a great deal’ of good modeling from attendings on providing EOL care, only 12% reported having had ‘a great deal’ of specific training (i.e. formal teaching or observation) in providing EOL care. Prior to the workshop, 53% of fellows agreed with the statement: “Overall, I feel confident about my ability to provide EOL care to patients.” After the workshop, 88% of fellows agreed or strongly agreed with this statement (Figure 1). For each of the 7 specific EOL care abilities surveyed, fellows’ collective self-reported confidence increased after the workshop, with the exception of the “...ability to address difficult questions (e.g. pain, process of dying, etc.) honestly and compassionately” (Figure 2). Conclusion: Simulation and skills training is an effective and desirable way to teach, practice and integrate skills in EOL care, and can be done in a half-day workshop.
Kamrath H; Goloff N; Norbie E; Woll A
Pediatrics
2019
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).
Parental knowledge and opinions on palliative care for children
ambulatory care; analysis of variance; awareness; Caucasian; child; conference abstract; controlled study; convenience sample; data analysis software; ethnic group; female; high school; human; Illinois; institutional review; legal guardian; Likert scale; major clinical study; male; New York; palliative therapy; physician; randomized controlled trial; terminal care
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
Zawistowski C A; Black C; Spruill T M; Granowetter L
Pediatrics
2018
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).
Peer-designed parents' bereavement panel: Exposing first-year medical students to pediatric end-of-life care
Bereavement; care behavior; child; clinical article; comfort; conference abstract; controlled study; curriculum; female; human; human experiment; learning; Likert scale; male; medical school; medical student; pediatric oncologist; pediatrics; preclinical study; terminal care
Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and standardization across medical schools is lacking. Furthermore, very little effort has focused on the incorporation of pediatric-specific end-of-life care education into the preclinical years. The purpose of this study is to determine whether a bereavement panel consisting of parents who had a child pass away from a life threatening condition: (1) improved first-year medical students' self-reported ability to interact with children suffering from life-threatening conditions and their families, and (2) changed students' opinions about pediatric end-of-life care curriculum. Evaluation: A total of 23 first-year medical students attended a two-hour panel consisting of four parents who had a child pass away from a life threatening condition. The panel was part of a weeklong, peer-designed elective focused on exposing students to various aspects of pediatrics. It consisted of a question-and-answer discussion facilitated by a pediatric oncologist, with a focus on the parents' positive and negative experiences with different aspects of health care throughout their child's illness. Pre-panel and post-panel surveys were administered, asking students to report agreement with various statements using a 10- point Likert scale.
Rolfes M; Sunde K; Jones A; Starr S
Pediatrics
2018
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).
Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats
awareness; brother; California; child; conference abstract; documentation; face; female; grief; hearing; heat; hot water; human; literature; male; memory; motion; palliative therapy; pediatrics; photography; physician; sound; teacher; teaching; touch; videorecording; voice
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in a pediatric palliative aquatics program operating within a pediatric palliative care facility in California. Evaluation: Electronic media has changed many facets of daily life, including providing palliative care to medically fragile children. Its use provides families with an "electronic biography" of their child and offers siblings a connection to a brother or sister who might have died before their birth. Oral histories are further supported with video data, thereby providing families with an enduring legacy. Loved ones unable to be present at events in "real time" can enjoy the electronic version of the child's experience. The legacy created in this manner exists beyond the grief of the present moment, extending into a time when painful memories become muted, allowing families to remember joyful events in the child's life. Families can photograph and video the child's responses to aquatic sessions, documenting movements and abilities virtually impossible for the child on land. Information can be shared with pediatric care practitioners using electronic media, providing them with detailed documentation of the patient's responses and enhanced abilities during warm water sessions. Consent is always obtained prior to facility use. As always, precautions against inappropriate use of electronic media during aquatics sessions must be assured. Public use of specific photos and film are sensitively screened for appropriateness. In researching program outcomes, the child ultimately becomes both subject and teacher during palliative aquatic sessions. Individual patient responses to sessions can be documented over time, allowing researchers opportunities to observe in slow motion subtle reactions of the patient to movement and touch. The aquatic practitioner-trainees' sense of touch, sight and hearing becomes more acute as s/he observes a child's facial and body reactions to movement, warmth, water pressure and sound. In our ongoing work of training new practitioners, appropriate use of electronic media and careful documentation of sessions has become one of our most valuable teaching tools.
Pyatt S; Fisher J M
Pediatrics
2018
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).
Evaluation of residents' level of comfort with palliative care concepts before and after
child; comfort; conference abstract; controlled study; hospice; human; life; nomenclature; nurse practitioner; palliative therapy; patient care; pediatric hospital; residency education; skill; tertiary health care; total quality management
Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While Pediatric Advance Care Teams (PACT) have been established at many children's hospitals, they are frequently in different stages of development. Residents are often at the forefront of patient care, and may find themselves in difficult end-of-life situations requiring skills not formally taught in their training. As PACT teams grow into their roles at various children's hospitals, residents will continue to be challenged by unfamiliar and unique situations, resulting in a need to educate residents in palliative care. Methods The objective of the quality improvement project was to evaluate residents' understanding of several concepts of palliative care, develop an educational intervention, and to reevaluate resident understanding following this intervention. Goal improvement was 40% over 2 months. 91 pediatric residents of a single program associated with a tertiary care pediatric hospital were invited to participate in the survey. The pretest survey addressed residents' level of comfort of 5 concepts in palliative care on a scale from 1 (least) to 10 (most). The pretest evaluated comfort describing palliative care terminology, comfort discussing concepts with family, and their ability to identify the roles for residents and PACT. After collection, a conference was prepared by the investigators in collaboration with the PACT team physician and nurse practitioner to ensure consistency within the institution. The conference was designed to address knowledge gaps revealed by the survey. Audio and visuals were recorded and made accessible online for all residents. Following the conference, a document was distributed to the residents, addressing the educational needs concerning palliative care, as well as scholarly links to numerous AAP resources on palliative care. A post intervention survey identical to the pretest was then administered. Results 55 residents responded to the pretest survey, with 16 responding post intervention. Pretest mean scores were calculated from the 5 questions, with an average score of 5.68 of a possible 10. Post test mean scores were averaged with result of 7.60 of a possible 10. Post test intervention mean scores showed an increase of 34% from baseline. Conclusion These results show that after intervention, there is a significant increase in residents' level of comfort regarding understanding of basic concepts of palliative care. With educational materials which concisely address the needs determined by initial evaluation, we were able to effectively engage the residents through both audio and visual means to achieve an appreciable and replicable intervention for educating residents in palliative care. Moving forward, we will focus on continuing educational and clinical opportunities for residents in collaboration with the growth of the PACT team.
Pohl C E
Pediatrics
2018
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).
Increasing accurate palliative care consultation in the NICU
caregiver; child; conference abstract; controlled study; human; International Classification of Diseases; length of stay; mortality risk; newborn; nurse practitioner; outcome assessment; palliative therapy; patient referral; satisfaction; staff training; total quality management
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population. We desired that those at highest risk of extended LOS with associated mortality receive early PPC consultation. Our multidisciplinary quality improvement project aimed to increase PPC consultation for NICU patients with a life-limiting anomaly identified by trigger-list tool to 80% within one year.
Humphrey L; Schlegel A
Pediatrics
2018
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).
Communicating death and dying through simulation: A project with pediatric residents
acute disease; child; clergy; comfort; communication skill; conference abstract; conversation; curriculum; emergency treatment; human; Likert scale; pain; palliative therapy; residency education; resident; simulation; teaching; terminal care
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014, during this author's chief resident academic year, many residents expressed feelings of frustration and inadequacy when caring for children at end-of-life, and also reported a lack of opportunities to process their patients' deaths. To address these needs, we partnered with an interdisciplinary team to create an end-of-life communications-based curriculum that was integrated into our existing resident simulation program. We aimed to provide communication opportunities for our residents in a safe, structured, and directly observed environment where they could practice communication skills and reflect on their experiences. We hypothesized that residents would value these simulations as part of their residency training, and would feel more comfortable communicating difficult news after practicing such skills. Evaluation The end-of-life simulation curriculum was developed by an interdisciplinary team of ICU and hospitalist physicians, pediatric palliative care professionals, child life specialists, and hospital chaplains. Over two years, all residents participated in simulations that focused on communicating with parents (standardized actors) in pediatric death and dying situations. Three pausing points were included during the simulation, offering residents the unique opportunity to discuss together how best to approach the next conversation with the standardized parent-actor. Following the simulations, the interdisciplinary team debriefed with the residents, allowing opportunity for reflection and addressing questions and concerns. After each simulation/debriefing cycle, educational resources were provided through an electronic teaching file, as well as opportunities to meet oneon- one with members of the interdisciplinary team for further processing. Pre-tests and post-tests were used to evaluate residents comfort with end-of-life communication and pediatric palliative care provision. A 5-point Likert scale was used to evaluate residents' level of comfort with a variety of skills/topics, including: discussing end-of-life care options with parents, limiting emergency treatment, managing pain/symptoms, pronouncing death, and coping with one's own responses to a child's death. Discussion Pediatric residents feel unprepared to communicate with families in end-of-life situations. Through this innovated simulation curriculum, we have been able to better understand the needs of our resident trainees and by providing exposure to these complex situations in a safe, empowering environment. Following our first year of data collection, we found that 92% of residents reported feeling more comfortable communicating with families in end-of-life situations after participating in a two hour simulation. The residents reported benefitting from these experiences; 100% of residents requested additional training in palliative care. We anticipate having second cycle data available for presentation in Fall, 2016 to further demonstrate the how this innovative simulation enhances pediatric resident education.
Greening H G; Havalad V; Kobler K
Pediatrics
2018
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).
PICU and palliative care partnership to standardize family meetings and decrease ICU readmission rates
child; conference abstract; controlled study; documentation; health care system; hospital readmission; human; intensive care; invasive procedure; length of stay; nurse practitioner; palliative therapy; protocol compliance; satisfaction; total quality management
Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient with input from all pertinent members of the multi-professional team" (2007). We set forth to follow this recommendation through palliative care and pediatric ICU partnerships as well as standardized family meetings. We hypothesize that this will improve patient and family satisfaction, decrease ICU re-admission rates and may decrease overall length of stay and invasive procedures. We have developed a quality improvement project targeting patients that have had a re-admission to the PICU within 30 days. The project outlines the optimal timing of family meetings, provides a meeting content planner, and documentation template. The targeted patient population will receive an automatic palliative care consult to assist with the coordination and conducting of an initial family meeting. The frequency of subsequent scheduled family meetings will be determined based on patient/family needs and acuity of illness. In 2015, we found 42 re-admissions (3% of all PICU admissions) within a 30 day period. The majority of the readmissions were medically complex children with three or more co-morbid conditions. Our goal through implementation of this program is to decrease the readmissions by 20% within a one year time period. We intend to use a standardized format for these meetings as previously published by Nelson et al in 2009. Meetings will be attended by at least one family member, bedside nurse, ICU physician (fellow or attending) or Nurse Practitioner and palliative care team members. The family meeting documentation template will be created in our EMR to serve as both a guide for the meeting and documentation format. Evaluation We plan to monitor our protocol compliance by tracking readmissions, placement of palliative care consult order, family meeting occurring within 48-72 hours of readmission, documentation of the family meetings, and frequency at which family meetings are occurring thereafter. Upon successful implementation of our protocol, we will follow total length of stay, PICU length of stay and number of invasive procedures. Discussion Hospital re-admission rates are becoming a widespread concern throughout many healthcare systems. The majority of these pediatric re-admissions involve medically complex children. We hope this multi-disciplinary approach utilizing recommended best practices from the American College of Critical Care Medicine Task Force contributes to a decrease in ICU re-admission rates.
Frizzola M; Miller E; Hayman J; Levy C
Pediatrics
2018
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).
Pediatric palliative care-child life beyond the hospital
bereavement; ceremony; child; child parent relation; childhood; conference abstract; controlled study; coping behavior; education; emergency care; health care need; home visit; human; memory; palliative therapy; psychosocial care; respite care; sibling; skill; voice
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and skills to provide innovative care in Pediatric Palliative Care and home settings. Evaluation: Using fundamental skills of therapeutic relationship building and play-based communication, CCLS are able to assess needs and provide interventions that meet the unique needs of each child and family member throughout their continuum of care. In this setting, we have the freedom of time, often over a period of several months and even years. We may spend time with the patient/ family during respite care, home visits, holiday events and other occasions. The Child Life Assessment includes factors such as the child's growth and development, physical strengths and limitations, diagnosis, treatment, communication methods, coping skills, family systems, cultural beliefs, community support/resources and other health care, family and child variables. First and foremost our goal is to let the child be a child and have everyone understand and support the strengths of each child. This relationship specifically allows each child and family to establish goals of care unique to their child and advocate well throughout the continuum of care. CCLS can then offer support and maintain the child's developmental milestones despite their medical challenges. The CCLS can also reaffirm the child's life, life review and life closure when the time is right. Also important, CCLS can help siblings to have a voice that is respected and honored in the family and facilitate opportunities to continue this role throughout their childhood. We can also support and nurture parenting through the tough times and as developmental change occurs with both affected children and their siblings. CCLS provide psychosocial support to facilitate expression of thoughts and feelings, self-expression, legacy leaving and memory making. We involve children in discussions and decisions about their medical condition and treatment when medically appropriate, and provide tools to enhance their coping strategies. We provide bereavement opportunities for the dying child and the whole family.
Case C; Fisher J M
Pediatrics
2018
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).
Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan
communication; healthcare professionals; pediatric palliative care
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician (PCP) an integral member of the PPC care team. However, PPC to PCP communication is often lacking. This project sought to improve the communication between PPC teams and primary …
Ernst KF; Humphrey L; Rossfeld Z
Pediatrics
2019
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).
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
article; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy. Copyright © 2019 by the American Academy of Pediatrics.
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Pediatrics
2019
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).
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>
Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
Infant; Humans; Attitude of Health Personnel; Clinical Decision-Making/mt [Methods]; Infant Care/mt [Methods]; Infant Care/px [Psychology]; Neonatologists/px [Psychology]; Infant Care/st [Standards]; Neonatologists/st [Standards]; Netherlands/ep [Epidemiology]; Scandinavian and Nordic Countries/ep [Epidemiology]; Survival Rate/td [Trends]; Withholding Treatment/st [Standards]; Newborn
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are identified and discussed.
Verhagen A A E
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2018-0478J" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0478J</a>
Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions
BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having >/=2 intensity markers (including hospital death). RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had >/=2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and >/=2 intensity markers. Hispanic and "other" race and/or ethnicity were associated with hospital death and >/=2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and >/=2 intensity markers. CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.
Johnston E E; Bogetz J; Saynina O; Chamberlain L J; Bhatia S; Sanders L
Pediatrics
2019
<a href="http://doi.org/10.1542/peds.2018-2228" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-2228</a>
Neonatologists' Attitudes About Diagnostic Whole-Genome Sequencing in the NICU
Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing testing became available, and another focus group took place 3 years later. Focus groups were audiotaped, transcribed, and analyzed by using standard techniques of grounded theory. Different analysts coded them for themes. The analysts then discussed differences and agreed on major themes. Twelve doctors participated in the first focus group, and 9 doctors participated in the second; 62% were attending physicians, and the rest were fellows. There were 14 women and 7 men. We did not collect any other demographic information on participants. Surprisingly, we found few differences between the earlier focus group and the later one. Comments were categorized as falling into 4 domains: (1) uncertainty about the interpretation of results, (2) issues about parental consent and limits on their right to know genomic information, (3) different opinions about whether and how genomic results could be clinically useful, and (4) potential harms of genomic testing.
Knapp B; Decker C; Lantos J D
Pediatrics
2019
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).
<a href="http://doi.org/10.1542/peds.2018-1099J" target="_blank" rel="noreferrer noopener"> 10.1542/peds.2018-1099J</a>
Survival and Health Care Use After Feeding Tube Placement in Children With Neurologic Impairment
BACKGROUND AND OBJECTIVES: Children with neurologic impairment (NI) often undergo feeding tube placement for undernutrition or aspiration. We evaluated survival and acute health care use after tube placement in this population. METHODS: This is a population-based exposure-crossover study for which we use linked administrative data from Ontario, Canada. We identified children aged 13 months to 17 years with a diagnosis of NI undergoing primary gastrostomy or gastrojejunostomy tube placement between 1993 and 2015. We determined survival time from procedure until date of death or last clinical encounter and calculated mean weekly rates of unplanned hospital days overall and for reflux-related diagnoses, emergency department visits, and outpatient visits. Rate ratios were estimated from negative binomial generalized estimating equation models adjusting for time and age. RESULTS: Two-year survival after feeding tube placement was 87.4% (95% confidence interval [CI]: 85.2%–89.4%) and 5-year survival was 75.8% (95% CI: 72.8%–78.4%). The adjusted rate ratio comparing weekly rates of unplanned hospital days during the 2 years after versus before tube placement was 0.92 (95% CI: 0.57–1.48). Similarly, rates of reflux-related hospital days, emergency department visits, and outpatient visits were unchanged. Unplanned hospital days were stable within subgroups, although rates across subgroups varied. CONCLUSIONS: Mortality is high among children with NI after feeding tube placement. However, the stability of health care use before and after the procedure suggests that the high mortality may reflect underlying fragility rather than increased risk from nonoral feeding. Further research to inform risk stratification and prognostic accuracy is needed.
Nelson K E; Rosella L C; Mahant S; Cohen E; Guttmann A
Pediatrics
2019
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).
<a href="http://doi.org/10.1542/peds.2018-2863" target="_blank" rel="noreferrer noopener"> 10.1542/peds.2018-2863</a>
Caregiver Experience in Pediatric Dialysis
BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease. METHODS: We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences. RESULTS: Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome. CONCLUSIONS: Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population.
Wightman A; Zimmerman C T; Neul S; Lepere K; Cedars K; Opel D
Pediatrics
2019
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).
<a href="http://doi.org/10.1542/peds.2018-2102" target="_blank" rel="noreferrer noopener"> 10.1542/peds.2018-2102</a>
How Parents of Children With Cancer Learn About Their Children's Prognosis
Prognosis; Child; Hospitals Pediatric; Only Child
OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of children with cancer at 2 academic pediatric hospitals. We asked parents how they learned about prognoses and evaluated relationships between information sources and prognostic understanding, defined as accuracy versus optimism. We excluded parents with pessimistic estimates and whose children had such good prognoses that optimism relative to the physician was impossible. Analytic cohort of 256 parent-physician pairs. RESULTS: Most parents considered explicit sources (conversations with oncologists at diagnosis, day-to-day conversations with oncologists, and conversations with nurses) "very" or "extremely" informative (73%-85%). Implicit sources (parent's sense of how child was doing or how oncologist seemed to feel child was doing) were similarly informative (84%-87%). Twenty-seven percent (70/253) of parents reported prognostic estimates matching physicians' estimates. Parents who valued implicit information had lower prognostic accuracy (odds ratio [OR] 0.50; 95% confidence interval 0.29-0.88), especially those who relied on a "general sense of how my child's oncologist seems to feel my child is doing" (OR 0.47; 0.22-0.99). Parents were more likely to use implicit sources if they reported receiving high-quality prognostic information (OR 3.02; 1.41-6.43), trusted the physician (OR 2.01; 1.01-3.98), and reported high-quality physician communication (OR 1.81; 1.00-3.27). CONCLUSIONS: Reliance on implicit sources was associated with overly-optimistic prognostic estimates. Parents who endorsed strong, trusting relationships with physicians were not protected against misinformation.
Sisk BA; Kang TI; Mack JW
Pediatrics
2017
<a href="http://doi.org/%2010.1542/peds.2017-2241" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-2241</a>
Provider Perspectives on Use of Medical Marijuana in Children With Cancer
Cross-Sectional Studies; Cannabis; Child; Logistic Models; Washington; Only Child
BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS: We sent a 32-item, cross-sectional survey to 654 pediatric oncology providers in Illinois, Massachusetts, and Washington characterizing MM practices, knowledge, attitudes, and barriers. Forty-eight percent responded; 44% (n = 288) were included in analyses. Providers were stratified by status as legally eligible to certify (ETC) for MM. We used Fisher�s exact and Wilcoxon rank tests and univariate and multivariate logistic regression models for group comparisons.RESULTS: The provider median age was 35 years (range 22�70 years); 33% were ETC (83 physicians; 13 Washington state advance practice providers). Thirty percent of providers received ?1 request for MM in the previous month. Notably, only 5% of all providers knew state-specific regulations. ETC providers were more likely to know that MM is against federal laws (P < .0001). Whereas most providers (92%) reported willingness to help children with cancer access MM, in adjusted models, ETC providers were less likely to indicate approval of patient MM use by smoking, oral formulations, as cancer-directed therapy, or to manage symptoms (P < .005 for all). Forty-six percent of all providers cited the absence of standards around formulations, potency, or dosing to be the greatest barrier to recommending MM.CONCLUSIONS: Most pediatric oncology providers are willing to consider MM use in children with cancer and receive frequent inquiries. However, ETC providers endorse less favorable attitudes overall. The absence of standards is an important barrier to recommending MM.
Ananth P; Ma C; Al-Sayegh H; Kroon L; Klein V; Wharton C; Hallez E; Braun Ilana; Michelson K; Rosenberg AR; London W; Wolfe J
Pediatrics
2017
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review
CONTEXT: Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. OBJECTIVE: To review the instruments used to assess the impact of PPC interventions. DATA SOURCES: Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched. STUDY SELECTION: Inclusion criteria were as follows: definition of PPC used; patients aged 0 to 18 years; diseases listed in the directory of life-limiting diseases; results based on empirical data; and combined descriptions of a PPC intervention, its outcomes, and a measurement instrument. DATA EXTRACTION: Full-text articles were assessed and data were extracted by 2 independent researchers, and each discrepancy was resolved through consensus. The quality of the studies was assessed by using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields checklist. RESULTS: Nineteen of 2150 articles met the eligibility criteria. Researchers in 15 used quantitative methods, and 9 were of moderate quality. Multidimensional outcomes included health-related quality of life, spiritual well-being, satisfaction with care and/or communication, perceived social support, and family involvement in treatment or place-of-care preferences. PPC interventions ranged from home-based to hospital and respite care. Only 15 instruments (of 23 reported) revealed some psychometric properties, and only 5 included patient-reported (child) outcome measures. LIMITATIONS: We had no access to the developmental process of the instruments used to present the underlying concepts that were underpinning the constructs. CONCLUSIONS: Data on the psychometric properties of instruments used to assess the impact of PPC interventions were scarce. Children are not systematically involved in reporting outcomes.
Friedel M; Aujoulat I; Dubois AC; Degryse JM
Pediatrics
2019
<a href="http://doi.org/10.1542/peds.2018-2379" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-2379</a>
Modes of Death Within a Children's Hospital
Human; Length of Stay; Child; Hospitalization; Intensive Care Units Pediatric; Treatment Failure; Referral and Consultation; Palliative Care; Hospitals Pediatric; Intensive Care Units Neonatal; Resuscitation; Confidence Intervals; Odds Ratio; Qualitative Studies; Descriptive Statistics; Race Factors; Retrospective Design; Whites; Blacks; Hospital Mortality -- In Infancy and Childhood; Multiple Logistic Regression
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling. RESULTS: We identified 579 patients who were deceased; 61% were <1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13--0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05--5.73), mostly because of code events occurring in the first 24 hours of hospitalization. CONCLUSIONS: Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.
Trowbridge A; Walter JK; McConathey E; Morrison W; Feudtner C
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-4182" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-4182</a>
Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.
Feudtner C; Schall T; Hill D
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2018-0516C" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0516C</a>
In the Best Interest of the. . .Parents: Norwegian Health Personnel on the Proper Role of Parents in Neonatal Decision-making
OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this article, we report views from health care personnel (HCP) on the appropriate parental role. METHODS: Focus group interviews with 5 different groups of HCP (neonatal nurses, midwifes, obstetricians, mother-fetal specialists, and neonatologists) dealing with life-and-death decisions throughout pregnancy and birth were performed at the Norwegian University of Science and Technology and at St Olav's Hospital in Trondheim, Norway in 2014-2017. Interviews were taped and transcribed. Inductive analysis was performed for each group discussion for emergent ethical themes. A summary of the transcribed discussion was sent to the relevant focus group participants for comments. RESULTS: Our participants felt strongly that doctors, not parents, should have the final say. They did not think parents should have to live with the burden of the decision. The possible disagreement between parents, lack of necessary knowledge, experience, time, and emotional stability all point toward the neonatologist as the optimal decision-maker, within a model of "Patient Preference-Satisfaction Paternalism." CONCLUSIONS: The general attitude of our groups was that parents should have a say and be included in a thorough information and decision-making process. The doctor, or a team of HCP, however, should make the final decision, being in the best position both epistemologically and normatively to promote the best interest of both parents and the child.
Ursin L;Syltern J
Pediatrics
2018
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).
<a href="http://doi.org/10.1542/peds.2018-0478H" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0478H</a>
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Vadeboncoeur C; McHardy M
Pediatrics
2018
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).
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
If I could just chime in here': ”: Communication Patterns of Interprofessional Teams in the Pediatric Cardiac Intensive Care Unit
Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate with each other about care plan development in the CICU. Methods: Audio recordings were made of weekly CICU team meetings including representatives from all interdisciplinary care providers prior to meeting with a patient’s family. Quantitative case coding described percentage …
Walter J; Schall T; DeWitt A; Arnold R; Feudtner C
Pediatrics
2018
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).
<a href="http://doi.org/10.1542/peds.142.1_MeetingAbstract.638" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.638</a>
Interprofessional Team Meetings in the Pediatric Cardiac Intensive Care Unit
Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other about care plan development in the CICU. Methods: Meetings of family members and CICU clinicians were audio recorded. We used quantitative case-coding to compare the duration of contributions made by attendees, …
Walter J; Sachs Emily; DeWitt A; Arnold R; Feudtner C
Pediatrics
2018
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).
<a href="http://doi.org/10.1542/peds.142.1_MeetingAbstract.659" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.659</a>
Pattern of Readmissions Among Children with Multiple Chronic Conditions versus Children with No Chronic Conditions
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions are at highest risk of readmission after discharge. We sought to compare predictors and timing of readmission in children with multiple chronic conditions to those in children with no chronic conditions. Methods: Using data from the 2013 National Readmissions Database, we analyzed patients aged 1 to 18 years with no chronic conditions or 4 or more chronic conditions. The daily hazard of …
Bucholz EM; Hall M; Gay J; Harris M; Berry Jay
Pediatrics
2018
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).
<a href="http://doi.org/10.1542/peds.142.1_MeetingAbstract.360" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.360</a>
Models of Care Delivery for Children With Medical Complexity
Caregiver; medical complexity; models of care; Only Child; palliative care; pediatric
Children with medical complexity (CMC) are a subset of children and youth with special health care needs with high resource use and health care costs. Novel care delivery models in which care coordination and other services to CMC are provided are a focus of national and local health care and policy initiatives. Current models of care for CMC can be grouped into 3 main categories: (1) primary care-centered models, (2) consultative- or comanagement-centered models, and (3) episode-based models. Each model has unique advantages and disadvantages. Evaluations of these models have demonstrated positive outcomes, but most studies have limited generalizability for broader populations of CMC. A lack of standardized outcomes and population definitions for CMC hinders assessment of the comparative effectiveness of different models of care and identification of which components of the models lead to positive outcomes. Ongoing challenges include inadequate support for family caregivers and threats to the sustainability of models of care. Collaboration among key stakeholders (patients, families, providers, payers, and policy makers) is needed to address the gaps in care and create best practice guidelines to ensure the delivery of high-value care for CMC.
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).
Pordes E; Gordon J; Sanders LM; Cohen E
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-1284f" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284f</a>
Changes in Parental Hopes for Seriously Ill Children
BACKGROUND: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time. METHODS: In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit. RESULTS: One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents. CONCLUSIONS: The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes.
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).
Hill DL; Nathanson PG; Carroll KW; Schall TE; Miller VA; Feudtner C
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-3549" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3549</a>
Ethical Framework for Risk Stratification and Mitigation Programs for Children With Medical Complexity
Only Child
Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices.
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).
Feudtner C; Schall T; Nathanson P; Berry J
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-1284j" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284j</a>
Status Complexicus? The Emergence of Pediatric Complex Care
Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Although a variety of definitions have been applied, the term CMC has most commonly been defined as children and youth with serious chronic conditions, substantial functional limitations, increased health and other service needs, and increased health care costs. The increasing attention paid to CMC has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. But will this change in focus lead to meaningful changes in outcomes for children with serious chronic diseases, or is the pediatric community simply adopting terminology with resonance in adult-focused health systems? In this article, we will explore the implications of the rapid emergence of pediatric complex care in child health services practice and research. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to the new challenges of caring for CMC, including (1) clearer definitions of the target population, (2) a more appropriate incorporation of components of care that occur outside of hospitals, and (3) a more comprehensive outcomes measurement framework, including the recognition of potential limitations of cost containment as a target for improved care for CMC.
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).
Cohen E; Berry JG; Sanders L; Schor EL; Wise PH
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-1284e" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284e</a>
Going Straight to the Source: A Pilot Study of Bereaved Parent-facilitated Communication Training for Pediatric Subspecialty Fellows
Bereavement; Pilot Projects
BACKGROUND: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education, particularly in the provision of "bad news." To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees. PROCEDURE: The authors designed and implemented a pilot communication training seminar in which bereaved parent educators and faculty facilitators led small groups in interactive, role-play scenarios. Surveys incorporating a retrospective preprogram assessment item to account for response-shift bias were used to assess short- and long-term changes in trainee comfort with delivering "bad news." RESULTS: Fifteen pediatric fellowship trainees participated in the communication seminar; complete data were available for 12 participants. After accounting for response-shift bias, participants reported significant improvement in overall preparedness, breaking bad news to a patient and family, and including the adolescent or young adult patient in conversations. Additionally, participants reported a significant improvement in their ability to address a patient and family's need for information, emotional suffering at the end of life (EOL), if and when a patient should be included in the conversation, and EOL care decisions. The participant's self-perceived improvement in comfort and preparedness persisted over time. CONCLUSIONS: Communication training for pediatric subspecialty trainees using bereaved parent educators is feasible and effective. Both medical trainee and bereaved parent participants benefited from involvement in this pilot study. Further iterations of this training will be modified to assess objective measures of improvement in trainees' communication skills.
Snaman JM; Kaye E; Cunningham MJ; Sykes A; Levine DR; Mahoney D; Baker JN
Pediatrics
2018
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).
<a href="http://doi.org/10.1002/pbc.26089" target="_blank" rel="noreferrer noopener">10.1002/pbc.26089</a>
Pediatric advance directives: parents' knowledge, experience, and preferences
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
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
Liberman DB; Pham PK; Nager AL
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</a>
Recognition and management of iatrogenically induced opioid dependence and withdrawal in children
Child; Humans; United States; Analgesics; Opioid-Related Disorders; Opioid; Substance Withdrawal Syndrome; Iatrogenic Disease
Opioids are often prescribed to children for pain relief related to procedures, acute injuries, and chronic conditions. Round-the-clock dosing of opioids can produce opioid dependence within 5 days. According to a 2001 Consensus Paper from the American Academy of Pain Medicine, American Pain Society, and American Society of Addiction Medicine, dependence is defined as "a state of adaptation that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist." Although the experience of many children undergoing iatrogenically induced withdrawal may be mild or goes unreported, there is currently no guidance for recognition or management of withdrawal for this population. Guidance on this subject is available only for adults and primarily for adults with substance use disorders. The guideline will summarize existing literature and provide readers with information currently not available in any single source specific for this vulnerable pediatric population.
2014-01
Galinkin J; Koh JL; Committee on Drugs; Section On Anesthesiology; Pain Medicine; American Academy of Pediatrics
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-3398" target="_blank" rel="noreferrer">10.1542/peds.2013-3398</a>
Pediatric palliative care and pediatric medical ethics: opportunities and challenges
adolescent; Child; Humans; infant; Pediatrics; Withholding Treatment; Communication; Resuscitation Orders; Ethics; Medical; Palliative Care; 20th Century; History
The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.
2014-02
Feudtner C; Nathanson PG
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608B" target="_blank" rel="noreferrer">10.1542/peds.2013-3608B</a>
The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring
adolescent; Child; Female; Humans; Male; bereavement; hospice care; Pediatrics; Family; Practice Guidelines as Topic; Professional-Family Relations; Patient-Centered Care; Patient Participation; Ethics; Medical; Palliative Care
Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.
2014-02
Jones BL; Contro N; Koch KD
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608C" target="_blank" rel="noreferrer">10.1542/peds.2013-3608C</a>
Relational autonomy: moving beyond the limits of isolated individualism
adolescent; Child; Female; Humans; Male; Adolescent Psychology; Personal Autonomy; Physician-Patient Relations; Pediatrics; Parents; Withholding Treatment; Professional-Family Relations; Communication; Child Psychology; Palliative Care; Psychological; Models
Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical practice. Reliance on an individualistic conception such as the "in-control agent" model prioritizes self-sufficiency in decision-making and highlights a decision-maker's capacity to have reason transcend one's emotional experience. An alternative model of autonomy, relational autonomy, highlights the social context within which all individuals exist and acknowledges the emotional and embodied aspects of decision-makers. These 2 conceptions of autonomy lead to different interpretations of several aspects of ethical decision-making. The in-control agent model believes patients or surrogates should avoid both the influence of others and emotional persuasion in decision-making. As a result, providers have a limited role to play and are expected to provide medical expertise but not interfere with the individual's decision-making process. In contrast, a relational autonomy approach acknowledges the central role of others in decision-making, including clinicians, who have a responsibility to engage patients' and surrogates' emotional experiences and offer clear guidance when patients are confronting serious illness. In the pediatric setting, in which decision-making is complicated by having a surrogate decision-maker in addition to a patient, these conceptions of autonomy also may influence expectations about the role that adolescents can play in decision-making.
2014-02
Walter JK; Ross LF
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608D" target="_blank" rel="noreferrer">10.1542/peds.2013-3608D</a>
Communicating about prognosis: ethical responsibilities of pediatricians and parents
adolescent; Child; Female; Humans; Male; Terminal Care; Physician-Patient Relations; Pediatrics; Adult; Parents; Prognosis; Professional-Family Relations; Communication
Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child's illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.
2014-02
Mack JW; Joffe S
Pediatrics
2014
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2013-3608E" target="_blank" rel="noreferrer">10.1542/peds.2013-3608E</a>