Exploring Ethical Dimensions in Neuropalliative Care.

Neurologic illnesses can be challenging to diagnose, involve changes in consciousness, and are often complicated by prognostic uncertainty. These disorders can affect how individuals interact with their environment, and as a result, many ethical concerns may arise related to their medical care. Key ethical issues in neuropalliative care include shared decision-making, evolving autonomy and capacity, best interest and harm principles, beneficence and nonmaleficence, futile and inappropriate care, justice and equity, and ableism. The four core principles of medical ethics, beneficence, nonmaleficence, justice, and autonomy, are foundational in considering approaches to these ethical challenges. Shared decision-making is rooted in the principle of autonomy. Evolving autonomy and capacity evoke autonomy, beneficence, and nonmaleficence. The best interest and harm principles are rooted in beneficence and nonmaleficence. Questions of futility and inappropriate care are founded in the principles of nonmaleficence, autonomy, and justice. Ableism invokes questions of nonmaleficence, autonomy, and justice. Practitioners of neurology will encounter ethical challenges in their practice. Framing decisions around the core ethical principles of beneficence, nonmaleficence, autonomy, and justice will help clinicians navigate challenging situations while acknowledging and respecting each patient's individual story.

Programmatic Palliative Care Consultations in Pediatric Heart Transplant Evaluations.

Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices. The study included patients less than 19 years of age who underwent a heart transplant evaluation between February 2012 and April 2020 at a single center. Patients evaluated in the programmatic palliative care (PPC) era (January 2016-April 2020) were compared to patients evaluated in the pre-PPC era (February 2012-December 2015). The study included 188 patients, with 91 (48%) in the PPC era and 97 (52%) in the pre-PCC era. Children < 1 year of age at the time of the evaluation represented 32% of the cohort. 52% of patients had single ventricle physiology. PPC was not significantly associated with increased HFD (IRR 0.94 [95% CI 0.79-1.2]). PPC was however associated with intensity of EOL care with decreased mechanical ventilation (OR 0.12 [95% CI 0.02-0.789], p = 0.03) and decreased use of ionotropic support (OR 0.13 [95% CI 0.02-0.85], p =0.03). PPC in pediatric heart transplant evaluations may be associated with less invasive interventions at EOL.

Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: a qualitative study.

OBJECTIVE: The paediatric cardiac ICU presents unique challenges to optimal communication practices, which may impact participation in medical decision-making and long-term psychosocial outcomes for families. This study characterised parent perceptions of (1) team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions. METHODS: A purposive sample of parents of children admitted to the cardiac ICU was selected to participate in interviews about their communication experiences. Data were analysed using a grounded theory approach. RESULTS: Twenty-three parents of 18 patients participated with an average length of stay of 55 days at the time of interview. Team practices that impeded communication included inaccurate/incomplete communication, inconsistent within team communication/coordination, and feeling overwhelmed by too many team members/questions. Team practices that facilitated communication included valuing parent preferences, provider continuity, explaining jargon, and eliciting questions. Preparation for family meetings included team practices, parental preferences, and experiences when learning about family meetings (including apprehension about meetings). Family meetings were described as valued opportunities to improve communication. CONCLUSION: Communication with medical teams represents a modifiable determinant of long-term outcomes for families of children in the cardiac ICU. When parents are included as valued members of their child's care team, they are more likely to feel a sense of control over their child's outcomes, even in the face of prognostic uncertainty. Family meetings represent an important opportunity to repair fractures in trust between families and care teams and overcome barriers to communication between parties.

Parental communication satisfaction with the clinical team in the paediatric cardiac ICU.

INTRODUCTION: Understanding parents' communication preferences and how parental and child characteristics impact satisfaction with communication is vital to mitigate communication challenges in the cardiac ICU. METHODS: This cross-sectional survey was conducted from January 2019 to March 2020 in a paediatric cardiac ICU with parents of patients admitted for at least two weeks. Family satisfaction with communication with the medical team was measured using the Communication Assessment Tool for Team settings. Clinical characteristics were collected via Epic, Pediatric Cardiac Critical Care Consortium local entry and Society for Thoracic Surgeons Congenital Heart Surgery Databases. Associations between communication score and parental mood, stress, perceptions of clinical care, and demographic characteristics along with patient demographic and clinical characteristics were examined. Multivariable ordinal models were conducted with characteristics significant in bivariate analysis. RESULTS: In total, 93 parents of 84 patients (86% of approached) completed surveys. Parents were 63% female and 70% White. Seventy per cent of patients were <6 months old at admission, 25% had an extracardiac abnormality, and 80% had a cardiac surgery this admission. Parents of children with higher pre-surgical risk of mortality scores (OR 2.875; 95%CI 1.076-7.678), presence of surgical complications (72 [63.0, 75.0] vs. 64 [95%CI 54.6, 73] (p = 0.0247)), and greater satisfaction with care in the ICU (r = 0.93922; p < 0.0001) had significantly higher communication scores. CONCLUSION: These findings can prepare providers for scenarios with higher risk for communication challenges and demonstrate the need for further investigation into interventions that reduce parental anxiety and improve communication for patients with unexpected clinical trajectories.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.

Disability and the Goods of Life.

The so-called Disability Paradox arises from the apparent tension between the popular view that disability leads to low well-being and the relatively high life-satisfaction reports of disabled people. Our aim in this essay is to make some progress toward dissolving this alleged paradox by exploring the relationship between disability and various "goods of life"-that is, components of a life that typically make a person's life go better for them. We focus on four widely recognized goods of life (happiness, rewarding relationships, knowledge, achievement) and four common types of disability (sensory, mobility, intellectual, and social) and systematically examine the extent to which the four disability types are in principle compatible with obtaining the four goods of life. Our findings suggest that there is a high degree of compatibility. This undermines the widespread view that disabilities, by their very nature, substantially limit a person's ability to access the goods of life, and it provides some guidance on how to dissolve the Disability Paradox.

A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review.

BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents. DISCUSSION: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility. CONCLUSIONS: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology.

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 interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven 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.

Parental Sources of Support and Guidance When Making Difficult Decisions in the Pediatric Intensive Care Unit.

OBJECTIVE: 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. STUDY DESIGN: 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. RESULTS: 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). CONCLUSIONS: 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.

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals.

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.

Interventions to cultivate physician empathy: a systematic review.

BACKGROUND: Physician empathy is both theoretically and empirically critical to patient health, but research indicates that empathy declines throughout medical school and is lower than ideal among physicians. In this paper, we synthesize the published literature regarding interventions that were quantitatively evaluated to detect changes in empathy among medical students, residents, fellows and physicians. METHODS: We systematically searched PubMed, EMBASE, Web of Science and PsychINFO in June of 2014 to identify articles that quantitatively assessed changes in empathy due to interventions among medical students, residents, fellows and physicians. RESULTS: Of the 1,415 articles identified, 64 met inclusion criteria. We qualitatively synthesized the findings of qualified studies by extracting data for ten study metrics: 1) source population, 2) sample size, 3) control group, 4) random assignment, 5) intervention type, 6) intervention duration, 7) assessment strategy, 8) type of outcome measure, 9) outcome assessment time frame, and 10) whether a statistically significant increase in empathy was reported. Overall, the 64 included studies were characterized by relatively poor research designs, insufficient reporting of intervention procedures, low incidence of patient-report empathy assessment measures, and inadequate evaluations of long-term efficacy. 8 of 10 studies with highly rigorous designs, however, found that targeted interventions did increase empathy. CONCLUSIONS: Physician empathy appears to be an important aspect of patient and physician well-being. Although the current empathy intervention literature is limited by a variety of methodological weaknesses, a sample of high-quality study designs provides initial support for the notion that physician empathy can be enhanced through interventions. Future research should strive to increase the sample of high-quality designs through more randomized, controlled studies with valid measures, explicit reporting of intervention strategies and procedures, and long-term efficacy assessments.

The Impact of a Pediatric Continuity Care Intensivist Program on Patient and Parent Outcomes: An Unblinded Randomized Controlled Trial.

Objectives We studied the impact of a standardized continuity care intensivists (CCIs) program on patient and family outcomes for long-stay patients in the pediatric intensive care unit (PICU), also assessing the intervention's acceptability and feasibility. Methods A patient-level, unblinded randomized-controlled trial in a PICU at a large children's hospital. Participants included: (1) patients with ≥ 7 days PICU admission and likely to stay another 7 days; (2) their parents; (3) PICU attendings participating as continuity attendings; and (4) PICU attendings providing usual care (UC). We examined a bundled intervention: (1) standardized continuity attending role, (2) communication training course for CCI, and (3) standardized timing of contact between CCI and patient/family. Results Primary outcome was patient PICU length of stay. Secondary outcomes included patient, parental, and clinician outcomes. We enrolled 115 parent-patient dyads (231 subjects), 58 patients were randomized into treatment arm and 56 into the UC arm. Thirteen attendings volunteered to serve as CCI, 10 as UC. No association was found between the intervention and patient PICU length of stay ( p = 0.5), other clinical factors, or parental outcomes. The intervention met a threshold for feasibility of enrollment, retention, and implementation while the majority of providers agreed the intervention was acceptable with more efficient decision making. Thirty percent CCIs felt the role took too much time, and 20% felt time was not worth the benefits. Conclusion CCI intervention did not impact patient or family outcomes. PICU attendings believed that the implementation of the CCI program was feasible and acceptable with potential benefits for efficiency of decision making.

Pediatric Ethics Consultation Services, Scope, and Staffing.

BACKGROUND AND OBJECTIVES: National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS. METHODS: Cross-sectional online survey was shared with an ethics informant at 181 children's hospitals in the United States from March to June 2022. Data were summarized descriptively and with semantic content analyses. RESULTS: One hundred seventeen surveys were received from individual children's hospitals in 45 states and Washington DC (response rate 65%), with 104 qualifying for survey completion. Almost one-quarter of settings received 50 or more pediatric ethics consults in the past 12 months. On average, 7.4 people at each institution have responsibility for completing ethics consults. Estimated full-time equivalent salary support for ethics is on average 0.5 (range 0-3, median 0.25). One-third (33%) of facilities do not offer any salary support for ethics and three-quarters do not have an institutional budget for the ethics program. Clinical staff primarily initiate consults. End-of-life, benefits versus burdens of treatments, and staff moral distress were the most frequently consulted themes. Almost one-quarter (21%) of children's hospitals do not receive any consults from patients or families. CONLUSIONS: The findings from this study reveal wide variation in PECS practices and raise concern about the lack of financial support provided for PECS despite substantial workloads.

Adherence to the AAP's Institutional Ethics Committee Policy Recommendations.

OBJECTIVES: In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations. METHODS: A convenience sample of ethics points of contact from Children's Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022. Nineteen survey questions were preidentified as reflecting measures specific to best practice standards previously published by the AAP. This subset of questions was analyzed using frequencies and categorized to assess for adherence to the AAP IEC policy recommendations. RESULTS: A total of 117 out of 181 surveys were completed (65%). Stark IEC practice gaps include: lack of diversity of membership, training needs to maintain members' competencies, quality improvement within the organization, and scope of ethics service. Over one-quarter of IECs do not have a systematic way of informing hospital staff about ethics consultancy services and how to place an ethics consult. Nineteen percent of responding IEC services do not inform patients or families about the existence of ethics consult services. One-third of responding children's hospitals do not provide resources for the IECs to engage in ethics education at the facility. CONCLUSIONS: IECs in children's hospitals are not consistently abiding by operational recommendations. Next steps should include assessment of recommendation barriers and enablers with a goal of enhancing strong practices across IECs in children's hospitals.

Demand and Supply: Association between Pediatric Ethics Consultation Volume and Protected Time for Ethics Work.

BACKGROUND: Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged. METHODS: Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children's hospitals and five programmatic domains. RESULTS: 104 children's hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. Academically-affiliated children's hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5. CONCLUSIONS: While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults.

Pediatric Ethics Consultation Services.

BACKGROUND AND OBJECTIVE: Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS. METHOD: The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care. RESULTS: Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS. CONCLUSION: Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association.

AIM: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease. METHODS: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review. Human subject studies and systematic reviews published in English in PubMed, ClinicalTrials.gov, and the Cochrane Collaboration were included. Structure: Although survival for pediatric congenital and acquired heart disease has tremendously improved in recent decades, morbidity and mortality risks remain for a subset of young people with heart disease, necessitating a role for palliative care. This scientific statement provides an evidence-based approach to the provision of primary and specialty palliative care for children with heart disease. Primary and specialty palliative care specific to pediatric heart disease is defined, and triggers for palliative care are outlined. Palliative care training in pediatric cardiology; diversity, equity, and inclusion considerations; and future research directions are discussed.

Supporting her autonomy: the obligations of guardians and physicians in adolescents' refusals of care.

This commentary on "Her Own Decision: Impairment and Authenticity in Adolescence" by Campbell, Derrington, Hester, and Lew adds further consideration of obligations for guardians and physicians of minors who struggle in making serious decisions regarding medical treatment.