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Context Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. Objectives To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. Methods A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. Results Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. Conclusion An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.

Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.

OBJECTIVE: Pediatric residents are expected to be competent in end-of-life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures. METHODS: Retrospective chart review of all deceased patients at one children’s hospital over 3 years collected patient demographics, time, and location of death. Mode of death was determined after chart review. Each death was cross-referenced with pediatric resident call schedules to determine residents involved within 48 hours of death. Descriptive statistics are presented. RESULTS: Of 579 patients who died during the study period, 46% had resident involvement. Most deaths occurred in the NICU (30% of all deaths); however, resident exposure to EOL care most commonly occurred in the PICU (52% of resident exposures) and were after withdrawals of life-sustaining therapy (41%), followed by nonescalation (31%) and failed resuscitation (15%). During their postgraduate year (PGY)-1

Context Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals. Objectives To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals. Methods We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care. Results We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care. Conclusion Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.

Family meetings, which bring together members of a seriously ill patient’s family and the interprofessional team (IPT), have been widely recognized as promoting shared decision-making for hospitalized patients, particularly those in intensive care units. The planning and conducting of interprofessional family meetings are hampered, however, by a lack of clarity about who is doing what and when, which in turn can lead to inefficiencies and uncoordinated efforts. This article describes how members of the IPT interact with one another (what we have termed team-team practices), distinguishing these interactions from how the IPT engages directly with family members (team-family practices) in preparing for and conducting family meetings. Although most research and guidelines have focused on team-family practices that directly affect patient- and family-level outcomes (e.g., safety and satisfaction), team-team practices are needed to coordinate team contributions and optimize the skills of the diverse team. Team members’ knowledge and attitudes also contribute to patient and family outcomes as well as team outcomes. Yet without attention to team-team practices before, during, and after a family meeting, the family-level outcomes are less likely to be achieved as are team well-being outcomes (e.g., reduced burnout and staff retention). Drawing upon team theory, we present a set of key concepts and corresponding terms that enable a more precise description of team-team practices and team-family practices, aiming to help with team training and evaluation and to enable future research of these distinct yet inter-related practices.

Context Interprofessional teams often develop a care plan before engaging in a family meeting in the pediatric cardiac intensive care unit (CICU)—a process that can affect the course of the family meeting and alter team dynamics but that has not been studied. Objectives To characterize the types of interactions that interprofessional team members have in pre–family meeting huddles in the pediatric CICU by 1) evaluating the amount of time each team member speaks; 2) assessing team communication and teamwork using standardized instruments; and 3) measuring team members' perceptions of collaboration and satisfaction with decision making. Methods We conducted a prospective observational study in a pediatric CICU. Subjects were members of the interprofessional team attending preparation meetings before care meetings with families of patients admitted to the CICU for longer than two weeks. We quantitatively coded the amount each team member spoke. We assessed team performance of communication and teamwork using the PACT-Novice tool, and we measured perception of collaboration and satisfaction with decision making using the Collaboration and Satisfaction About Care Decisions questionnaire. Results Physicians spoke for an average of 83.9% of each meeting's duration (SD 7.5%); nonphysicians averaged 9.9% (SD 5.2%). Teamwork behaviors were present and adequately performed as judged by trained observers. Significant differences in physician and nonphysician perceptions of collaboration were found in three of 10 observed meetings. Conclusion Interprofessional team members' interactions in team meetings provide important information about team dynamics, revealing potential opportunities for improved collaboration and communication in team meetings and subsequent family meetings.

Context Parents of children in the pediatric cardiac intensive care unit (CICU) report inadequate communication and a lack of empathy during conversations with their clinicians. Objective To assess quantitatively and qualitatively the contributions made by team members of different professions in communicating with parents during family meetings. Methods Prospective observational study. The study was conducted in the pediatric CICU at the Children's Hospital of Philadelphia. Subjects were members of the interprofessional team attending family meetings for patients admitted to the CICU longer than two weeks. We used quantitative conversation attribution and coding to compare durations of attendee contributions and contribution type by professional role. The SCOPE codebook and other quantitative codes drawn from best practices in family meetings were used to measure communication behaviors. A qualitative analysis of nurses' and social workers' contributions was used to identify themes not otherwise captured. Results Across 10 meetings, physicians spoke for an average of 78.1% (SD 10.7%) of each meeting, nonphysicians 9.6% (SD 7.8%), and parents 17.4% (SD 12.2%). Parental understanding was assessed an average of 0.2 (SD 0.4) times per meeting. Parents expressed emotion an average of 4.2 times per meeting (SD 7.1), and the clinical team responded empathetically 2.2 times per meeting (SD 4.3). All clinician empathic responses were a minority of their overall contributions. Conversation was almost exclusively between physicians and families until physicians indicated other team members could contribute. Conclusions Coordination of team members' roles in the meetings may improve parental engagement necessary for decision-making and empathic responses that are often missed.

Introduction Long-stay critically ill patients in the Pediatric Intensive Care Unit (PICU) may be at risk for inconsistencies in treatment plan, delay in plan progression, and patient/family dissatisfaction with communication. This article describes the development and evaluation of an intervention designed to improve continuity and communication delivered by continuity PICU attendings. Methods and analysis A randomized controlled trial of an intervention in one PICU that was randomized at the patient level. Eligible patients and their parents included those admitted to the PICU for longer than one week and were anticipated to remain for an additional 7 days. The intervention, a Continuity Care Intensivist (CCI), included early assignment of a continuity attending (separate from a regularly scheduled service attending), standardization of the continuity role to ensure consistent team and family contact and facilitate timely decision making, and enhancement of CCI communication skills. The outcomes evaluated were 1) patient PICU length of stay, ventilator-dependent days, and hospital acquired infections, 2) parental mood and satisfaction with PICU communication, and 3) intensivist perception of acceptability of intervention. Intention to treat analysis will be completed using multivariable linear regression to determine the impact of the intervention on outcomes. Lessons have been learned about the appropriate enrollment criteria for patients to allow for impact of continuity attending, frequent prognostic uncertainty in determining which patients will become longer stay in the PICU, and the difficulty of achieving timely initial contact of continuity attending with patients given the CCI's other commitments.

Context Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns. Objectives To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation. Methods We conducted semistructured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio-recorded, transcribed, and analyzed by two coders using a modified grounded theory approach. Results We interviewed 16 providers (10 physicians, one nurse practitioner, two social workers, two psychologists, and one child life specialist). Three core perceptions emerged: 1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; 2) providers held favorable opinions about the PPCS owing to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and 3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation. Conclusion The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.

PURPOSE: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child’s death. The goals of the current project were to learn about pediatric oncology team members’ perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. METHODS: We used a modified version of Experience Based Codesign (EBCD) involving members of the pediatric palliative care team and three inter-disciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. 11 pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including: patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration. RESULTS: The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices. CONCLUSIONS: The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.

Research is essential to advance knowledge of emerging and reemerging infectious diseases and to improve the effectiveness of therapies and the quality of care for all patients. Indeed, with more t...

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 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.

Shared decision-making (SDM) is a process that brings together clinical expertise and families’ values to arrive at a treatment choice. The process is especially useful for situations with >1 reasonable option, a condition of equipoise. However, for pediatricians who want to adhere to SDM best practices, there is limited practical guidance regarding how to communicate with parents and patients. With the following text, we describe pragmatic strategies to support SDM around both high-stakes decisions in the acute setting as well as in the ongoing management of chronic conditions in settings such as primary care.

Purpose Physician participation in philanthropy is important to marshal resources that allow hospitals to pursue their missions, but little is known about how physicians participate and their attitudes toward participation. Methods To characterize philanthropic roles physicians play and their attitudes about participation and its ethical acceptability, medical oncologists affiliated with the 40 National Cancer Institute–designated comprehensive cancer centers were randomly sampled and surveyed to evaluate experiences and attitudes regarding participation in philanthropy at their institutions. Responses were tabulated; significant associations by physicians' characteristics were explored. Results A total of 405 (52%) physicians responded; 62% were men, and 72% were white. Most (71%) had been exposed to their institution's fundraising/development staff; 48% of those were taught how to identify patients who would be good donors; 26% received information about ethical guidelines for soliciting donations from their patients; 21% were taught how their institution ensures Health Insurance Portability and Accountability Act compliance. A third (32%) of respondents had been asked to directly solicit a donation from their patients for their institution, of whom half declined to do so. Those who had solicited from their patients had been in practice significantly longer (mean, 19 v 13 years; P < .001). A substantial minority (37%) felt comfortable talking to their patients about donation (men more than women, 43% v 26%; P = .008); however, 74% agreed it could interfere with the physician-patient relationship, and 52% believe conflict of interest exists. Conclusion Institutions are asking physicians to directly solicit their patients for donations with variability in physicians' perceptions of the impact on relationships with patients and responses toward those requests.

Keywords: oncology; communication; pediatric; intensive care; family meeting; goals of care conversations

Neurologic outcome prediction, or neuroprognostication, after severe brain injury in children is a challenging task and has many ethical dimensions. Neurologists and intensivists are frequently asked by families to predict functional recovery after brain injury to help guide medical decision making despite limited outcome data. Using two clinical cases of children with severe brain injury from different mechanisms: hypoxic-ischemic injury secondary to cardiac arrest and traumatic brain injury, this article first addresses the importance of making a correct diagnosis in a child with a disorder of consciousness and then discusses some of the clinical challenges with deducing an accurate and timely outcome prediction. We further explore the ethical obligations of physicians when supporting parental decision making. We highlight the need to focus on how to elicit family values for a brain injured child, how to manage prognostic uncertainty, and how to effectively communicate with families in these challenging situations. We offer guidance for physicians when they have diverging views from families on aggressiveness of care or feel pressured to prognosticate with in a "window of opportunity" for limiting or withdrawing life sustaining therapies. We conclude with a discussion of the potential influence of emerging technologies, specifically advanced functional neuroimaging, on neurologic outcome prediction after severe brain injury.

Over the past 2 decades, hospitals have been increasingly called on to provide stabilization and treatment of pediatric patients with mental health symptoms. At least 1 in 10 hospitalized children >3 years has both a medical and a psychiatric condition,1 and the population of hospitalized patients with significant psychiatric morbidity is growing.2 Patients who have conditions affecting both their mental and physical health are in need of integrated medical and psychiatric treatments, and hospitals report challenges ensuring teams are prepared to care for these patients.3 In this month’s Hospital Pediatrics , Ibeziako et al4 provide a new window into understanding the characteristics of patients with eating disorders and somatoform disorders with an eye toward advancing the quality of their inpatient care. In this single-center, retrospective cohort study of 250 patients, Ibeziako et al4 found that patients hospitalized for eating disorders and somatoform disorders shared similar demographic characteristics, stressors, and coping styles. Nevertheless, a number of their medical and psychiatric symptoms and treatments differed. Eating disorder patients had higher rates of depression, suicidal ideation, and self-injury and required more laboratory testing, whereas somatoform disorder patients had greater fragmentation of their care, more neurologic evaluation, more specialty consults, and higher rates of learning disabilities. The reported findings highlight the value of a team approach to providing hospital care to patients with eating disorders and somatoform disorders. Efforts to use data like those reported by Ibeziako et al4 …

There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs.This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs.After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology.Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader.Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future.Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.

Context The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. Objective The objective of this study was to describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). Methods We conducted semi-structured interviews with a convenience sample of 10 physicians, including pediatric oncology and intensive care attendings and fellows. Results We identified key themes (three barriers and four facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision-making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and resource. Conclusion We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.

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.

Minorities are underenrolled in clinical research trials, and one-third of trials are underenrolled overall. The role of payment has not been studied at the national level as an explanation for enrollment patterns. Our objective was to examine the distribution of self-reported previous research participation across different sociodemographic groups; to assess the public's perception of fair payment for a low-risk medicine trial and the association between requested payment and sociodemographic characteristics; to estimate the amount of payment for a medication trial to achieve proportional representation of minorities and different socioeconomic groups. This was a cross-sectional study with nationally representative data collected in 2011 by the C.S. Mott Children's Hospital National Poll on Children's Health. To determine the relationship between perceived fair payment and individual-level characteristics, we used multivariable linear regression. With 60% participation rate, in a sample of 2,150 respondents 11% (n = 221) of the sample had previously participated in medical research. Requested payment differed significantly by racial/ethnic group with Hispanics requesting more payment than non-Hispanic whites (0.37 [95%CI 0.02, 0.72]) In contrast to payment at $49, $149, and $249, payment at $349 yielded proportional representation of racial/ethnic minority groups. Hispanics requested higher payment for research participation, suggesting a possible explanation for their underenrollment.

OBJECTIVE:Timely, high quality communication with families is essential to family-centered decision-making. Quality communication is represented by widespread documentation of prognostic, goals-of-care conversations (PGOCC) in the pediatric intensive care unit (PICU) and should occur without variation by patient characteristics.METHODS:Cohort included 645 PICU admissions in the top decile of risk of mortality on admission over six years. Electronic medical records were used to determine PGOCC, diagnosis on admission and complex chronic condition (CCC) status. Multivariate logistic regression and time-to-event analyses were used.RESULTS:Overall, 31% had a documented PGOCC. 51% had CCC status. 11% had an oncologic, 13% had a cardiovascular diagnosis on admission. 94% of patients who died in the PICU had PGOCC documented, but among the 200 patients with documented PGOCC, 78% did not die in the PICU. Oncologic diagnosis on admission was associated with a higher likelihood of PGOCC compared to non-CCC patients (ARR=1.86; SE=0.26) whereas no other diagnosis category reached the level of statistical significance. Median time from admission to PGOCC was 2 days. Age, gender and CCC status were not associated with whether a PGOCC was documented or with time from admission to PGOCC documentation. 45% of PGOCC in the cohort and 50% of conversations in patients with CCC were documented by PICU physicians.CONCLUSIONS:This study reveals the opportunity for improvement in documentation of PGOCC for critically ill children. It raises the questions of why there is variation of PGOCC across disease categories and whether PGOCC should be considered a quality measure for family-centered care.

Social media, no stranger to health care environments, is increasingly used by patients, families, clinicians, and institutions to interact and engage in new ways. The ethical challenges related to the use of social media in the clinical setting are familiar, yet come with a novel twist, including the possibility of having a conflict “go viral”. Health care clinicians and institutions must understand and embrace these technologies, while at the same time promoting policies and practices that ensure the ethically appropriate use of social media and address strategies for preventing and responding to a social media crisis.

Undue influence, which occurs when prospective research participants who otherwise would not enroll are induced to enter studies that might pose significant risks, may also involve social injustices such as unequal payment and participant selection methodsthat unequally distribute the potential harms and benefits of research.

Advances in prenatal diagnosis create a unique set of clinical ethics dilemmas. Doctors routinely obtain genetic screening, radiologic images, and biophysical profiling. These allow more accurate diagnosis and prognosis than has ever before been possible. However, they also reveal a wider range of disease manifestations than were apparent when prenatal diagnosis was less sophisticated. Sometimes, the best estimates of prognosis turn out to be wrong. The infant’s symptoms may be less severe or more severe than anticipated based on prenatal assessment. We present a case in which a prenatal diagnosis was made of severe osteogenesis imperfecta, leading to a decision to induce delivery at 31 weeks. On postnatal evaluation, the infant’s disease did not appear to be as bad as had been anticipated. We discuss the ethical implications of such diagnostic and prognostic errors.

Chronic Pain in the Ambulatory Palliative Care Setting: A Distinct Entity from Acute Pain? (S744) Jessica Merlin, MD, University of Alabama at Birmingham, Birmingham, AL. Courtney Williams, MPH, University of Alabama at Birmingham, Birmingham, AL. Malissa Pynes, BS, University of Alabama School of Medicine, Birmingham, AL. Catherine McCarty, BS Candidate 2016, Healthcare Management & Psychology, University of Alabama at Birmingham, Birmingham, AL. Elizabeth Kvale, MD, University of Alabama at Birmingham Center for Palliative and Supportive Care, Birmingham, AL.

Background and Objective:Parents of children with complex chronic conditions report fragmented care, unmet medical needs, and financial strain from health care costs. The aim of this study was to identify both prevalent themes discussed during pediatric palliative care consultation of patients with complex chronic conditions cared for by pediatric generalists and variation in consultation content by age and timing of consultation in disease course.Methods:Forty randomly selected initial inpatient or outpatient consultation notes authored by the pediatric palliative care team at an academic, tertiary care children’s hospital. Inclusion required that patients were primarily cared for by general pediatricians, pediatric hospitalists, or pediatric intensivists, instead of subspecialists. Qualitative analysis by 5 team members utilizing consensus-based findings was used to develop themes. Descriptive statistics were used to describe variations in themes across age and disease course.Results:Common themes included thorough review of patient baseline functioning, current symptoms, assessment of family’s understanding of the prognosis of the patient, coordination of communication with other medical teams and outpatient health care services, consideration of caregiver resources and burdens, and offering a framework for decision-making. Variation in consult themes by age/disease course included more discussion of communication problems and symptom management when patients were at their baseline, but otherwise little variation was found.Conclusions:Common themes covered in initial consultations correspond with documented unmet needs for chronically ill children. There was no significant variation in consultation themes by age/disease course, suggesting that generalists could broadly apply palliative care techniques to improve family-centered care.

Discussion of bioethics-related policy, given its value-laden nature, can result in heated and emotional discourse. Political leaders significantly affect public deliberations surrounding bioethica...

HEALTH CARE RECEIVED BY PATIENTS IN THE UNITED States is of inadequate quality. As part of the federal response to this major shortcoming, ensuring high-quality health care is a central theme throughout the Patient Protection and Affordable Care Act (ACA) signed into law in 2010. The focus on improving quality in the ACA, however, effectively overshadows other major concerns about the US health care system—among them, pervasive and persistent disparities in health care related to factors such as sex, race/ ethnicity, social class, insurance status, and language that fundamentally constrain how much overall quality can improve. The comparative inattention in the ACA to known inequalities in health care is noteworthy, not only in comparison with the focus on quality, but also because the lack of emphasis on disparities in the ACA language is inconsistent with recent positions of the Agency for Healthcare Research and Quality (AHRQ) and the Institute of Medicine (IOM). The AHRQ and IOM have indicated that reducing disparities is an unambiguous priority in working to improve quality in health care. This approach is consistent with analyses suggesting that reducing disparities based on social factors may improve health care quality more than would marginal improvements in overall medical care. Given this disconnect between provisions within the ACA and federally endorsed approaches to pursuing what amounts to “equality-in-quality,” it is worth examining the philosophical and empirical underpinnings of arguments for considering disparities while working to improve quality. Striving for equality-in-quality is not merely aspirational but should be foundational. Failing to address disparities may consign health care quality improvement efforts— originating from the ACA or otherwise—to less success than otherwise could be realized.

To assess sources of support and guidance on which parents rely when making difficult decisions in the pediatric intensive care unit and to evaluate associations of sources of support and guidance to anxiety, depression, and positive and negative affect.This was a prospective cohort study of 86 English-speaking parents of 75 children in the pediatric intensive care unit at The Children's Hospital of Philadelphia who were hospitalized greater than 72 hours. Parents completed standardized instruments and a novel sources of support and guidance assessment.Most parents chose physicians, nurses, friends, and extended family as their main sources of support and guidance when making a difficult decision. Descriptive analysis revealed a broad distribution for the sources of support and guidance items related to spirituality. Parents tended to fall into 1 of 2 groups when we used latent class analysis: the more-spiritual group (n = 47; 55%) highly ranked "what my child wants" (P = .023), spouses (P = .002), support groups (P = .003), church community (P.001), spiritual leader (P.001), higher power (P.001), and prayer (P.001) compared with the less-spiritual group (n = 39; 45%). The more-spiritual parents had greater positive affect scores (P = .005). Less-spiritual parents had greater depression scores (P = .043).Parents rely most on physicians, nurses, and friends and extended family when making difficult decisions for their critically ill child. Respondents tended to fall into 1 of 2 groups where the more-spiritual respondents were associated with greater positive affect and may be more resistant to depression.

One of six commentaries on “Obesity: Chasing an Elusive Epidemic,” by Daniel Callahan, from the January-February 2013 issue.

T13 and T18 over a 20-year period; 2) To evaluate the association between interventions and survival. Methods. Using linked Ontario health administrative databases that capture all hospitalizations in the single-payer healthcare system, we created a retrospective cohort of children born between April 1, 1991 and March 31, 2012 with a diagnosis code for T13 or T18 on a discharge record. Demographic data and procedure codes were extracted from hospitalization discharges through March 31, 2013. Survival times were calculated from listed birth and death dates; patients without death dates were censored at the most recent hospital discharge date. Results. The trisomy 13 cohort included 195 individuals; 161 (82.6%) died during follow-up. Of the 268 children with trisomy 18, 232 (86.6%) died. Median ages at death were 7 days and 5.5 days, respectively; the oldest children in the cohorts were 17 years in trisomy 13 and 15 years in trisomy 18. 80 children with trisomy 13 and 100 children with trisomy 18 received a total of 2141 procedures. Interventions per year increased over time from 10 in 1991 to 58 in 2012. Details about specific procedure types and association with survival will be forthcoming. Conclusions. Children with T13 and T18 in Ontario are receiving increasing numbers of interventions over time. Implications. Interventional outcomes will help guide family and clinician decision-making for care of children with T13 and T18.

Importance Parents’ beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. Objective To assess parents’ perceptions regarding the relative importance of 12 good-parent attributes. Design, Setting, and Participants A cross-sectional, discrete-choice experiment was conducted at a children’s hospital. Participants included 200 parents of children with serious illness. Main Outcomes and Measures Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. Results The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent–attribute ratings, which we labeled as: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). Compared with the other groups, the child’s health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. Conclusions and Relevance Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

Background Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling. Discussion Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. Summary The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.