Specific Trends in Pediatric Ethical Decision-Making: An 18-Year Review of Ethics Consultation Cases in a Pediatric Hospital.

This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature of ethical situations and dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic.

Understanding Drivers of Telemedicine in Pediatric Medical Care.

Purpose: As the demand for telemedicine services continues, greater knowledge about health care delivery preferences can inform high quality, efficient care. The present study sought to evaluate patient and family characteristics that may influence telemedicine utilization, particularly the choice between telephone and video telemedicine visits. Methods: This is a single-site cross-sectional, mixed methods study aimed at identifying factors associated with use of telephone and video telemedicine visits with pediatric patients and their families. Results: Seven hundred seventy-five (n = 775) caregivers completed a survey and 22 caregivers participated in follow-up focus groups and interviews. Findings indicate that female caregivers, those with higher education levels, and those with experience with technology were more likely to choose video telemedicine visits. Qualitative feedback provided several valuable recommendations based on patient/family experiences, which fell into four categories, including scheduling, accessibility, treatment resources, and care coordination. Conclusion: Findings demonstrate that previous experience, familiarity, and technology access may be important drivers in health care modality preference. Key elements that emerged relevant to user satisfaction and overall quality of the telemedicine experience: caregiver choice on visit type (telemedicine vs. in-person), child health care needs, and telemedicine education/training. As society moves toward pay-per-performance and value-based reimbursement, it is imperative that we focus on experience, health care needs, and training to improve patient experience and lower health care costs.

Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

Interdisciplinary simulation for nursing and medical students about final conversations: Catalyzing relationships at the end of life (CAREol).

OBJECTIVES: Final conversations (FCs) go beyond how patients want to be cared for at the end of life (EOL) and focus on messages of love, identity specific, and unique to an individual and relationship that requires self-examination, everyday talk that normalizes a difficult situation, religious/spiritual messages, and if needed, difficult relationship talk to heal broken relationships. The purpose of the Catalyzing Relationships at the End of Life (CAREol) program was to provide interdisciplinary education to nursing and medical students and clinical faculty about facilitating FCs among patients and families. METHOD: This two-part, quasi-experimental program consisted of a cognitive (online) and experiential (live simulation) curriculum experience. Program curriculum, including video vignettes, readings, and live simulation (utilizing actors), was developed by the study team. Reflective journaling and researcher designed pre- and post-tests were used to assess comfort, confidence, importance, and distress regarding FCs and collaboration with other disciplines. RESULTS: The pre-/post-test questions demonstrate statistical significance based on a paired t-test with effect sizes supporting the practical importance of the findings for effect size. Preliminary content and thematic analysis of qualitative responses describe categories of the mock team meeting experience and interaction with the actors to change patient and family outcomes. SIGNIFICANCE OF RESULTS: Early intervention with the CAREol program provides a framework to help students and clinical faculty facilitate FCs that may result in peace and comfort for patients and families during a difficult time.

A broader understanding of care managers' attitudes of advance care planning: A concurrent nested design.

AIMS AND OBJECTIVES: To examine barriers of advance care planning (ACP) experienced by care managers (CMs) through a mixed methods approach. A concurrent nested design was used to acquire a deeper understanding of ACP and to identify nuances between quantitative and qualitative data. BACKGROUND: Past quantitative studies on providers have identified barriers related to time, culture, knowledge, responsibility and availability of legal documents. These barriers, and accompanying attitudes and feelings, have been taken at face value without rich qualitative data to identify under what conditions and to what extent a barrier impacts care. DESIGN: A two-part multisite, mixed methods study was conducted using surveys and focus groups. METHODS: Surveys were completed by 458 CMs at 10 Area Agencies on Aging and 62 participated in one of eight focus groups. Data were analysed using a concurrent nested design with individual data analysis and a merged data approach. RESULTS: There were three main distinctions between the quantitative and qualitative data. First, while CMs reported on the survey that ACP was not too time consuming, focus group data revealed that time was an issue especially related to competing priorities. Second on the survey 60% of the CMS reported they had enough knowledge, but qualitative data revealed about more nuances. Last, the reported comfort levels in the quantitative data were less overt in the qualitative date where additional feelings and attitudes were revealed, for example, frustration with families, preferences for more physician involvement. CONCLUSIONS: Care managers reported their attitudes about ACP, clarified through a rigorous mixed methods analysis. Care managers can successfully lead ACP discussions, but require further education, resources and team-based guidance. RELEVANCE TO CLINICAL PRACTICE: Advance care planning is essential for reducing emotional, social and financial burdens associated with healthcare decision-making, and CMs can positively impact ACP discussions when appropriately supported by the clinical community. The many nuances in the ACP process that we found illustrate the need for ongoing discussions, education and research on this important topic.

Beyond privacy: benefits and burdens of e-health technologies in primary care.

In this mixed methods study we identify and assess ethical and pragmatic issues and dilemmas surrounding e-health technologies in the context of primary care, including what is already in the literature. We describe how primary healthcare professionals can access reliable and accurate data, improve the quality of care for patients, and lower costs while following institutional guidelines to protect patients. Using qualitative and quantitative methodologies we identify several underlying ethical and pragmatic burdens and benefits of e-health technologies.The 41 study participants reported more burdens than benefits, and were generally ambivalent about their level of satisfaction with their institutions' e-health technologies, their general knowledge about the technologies, and whether e-health can improve team-based communication and collaboration. Participants provided recommendations to improve e-health technologies in primary care settings.

Narrative analysis of the ethics in providing advance care planning.

Our objective was to better understand the values and ethical dilemmas surrounding advance care planning through stories told by registered nurses and licensed social workers, who were employed as care managers within Area Agencies on Aging. We conducted eight focus groups in which care managers were invited to tell their stories and answer open-ended questions focusing on their interactions with consumers receiving home-based long-term care. Using narrative analysis to understand how our participants thought through particular experiences and what they valued, we identified seven themes representative of their work with consumers and families: humility, respect, responsibilities, boundaries, empowerment, courage, and veracity.

Research with Refugee Populations in North America: Applying the NIH Guiding Principles for Ethical Research.

This article examines the ethics of research design and the initiation of a study (e.g., recruitment of participants) involving refugee participants. We aim to equip investigators and members of IRBs with a set of ethical considerations and pragmatic recommendations to address challenges in refugee-focused research as it is developed and prepared for IRB review. We discuss challenges including how refugees are being defined and identified; their vulnerabilities before, during, and following resettlement that impacts their research participation; recruitment; consent practices including assent and unaccompanied minors; and conflicts of interest. Ethical guidance and regulatory oversight provided by international bodies, federal governments, and IRBs are important for enforcing the protection of participants. We describe the need for additional ethical guidance and awareness, if not special protections for refugee populations as guided by the National Institutes of Health (NIH) Guiding Principles for Ethical Research.

Don't let the bedbugs bite: the Cimicidae debacle and the denial of healthcare and social justice.

Although bedbug infestation is not a new public health problem, it is one that is becoming more alarming among healthcare professionals, public health officials, and ethicists given the magnitude of patients who may be denied treatment, or who are unable to access treatment, especially those underserved populations living in low income housing. Efforts to quarantine and eradicate Cimicidae have been and should be made, but such efforts require costly interventions. The alternative, however, can further exacerbate the already growing problems of injustice, i.e., unfair treatment of patients, inaccessibility of needed resources. In the following paper, I examine the ramifications of denying access to medical care, among other healthcare justice dilemmas surrounding bedbug infestations. I also explore the value of health, and how healthcare professionals and public officials often feel as though bedbugs are not a priority because they, themselves, are not diseases, regardless of the fact they cause physical and mental problems that affect a person's health. I propose recommendations for improving the health and well-being of those vulnerable populations who are facing a difficult and growing public health problem that is currently being ignored in medical and public health ethics literature, regardless of increased media attention and unusual habitats of localized infestations, e.g., Statue of Liberty, New York City.

Feasibility and Acceptability: Narrative Writing with Caregivers in Pediatric Critical Care.

Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed sessions. Thematic analysis revealed two themes (people and relationships); texts were more cognitive than emotional. Conclusions: Caregivers, provided resources and supported by a narrative medicine facilitator, are likely to engage in expressive writing. The intervention warrants subsequent development.

Fulfilling 6 Domains of Health Care Quality: A Qualitative Parental Caregiver Study of Pediatric Telehealth During a Pandemic.

Using qualitative methods, we examine telehealth care quality from the perspective of parents of pediatric patients during a pandemic. We fill a gap in the literature essential for measuring effectiveness of pediatric telehealth. A total of 22 participants (n = 21 female; n = 1 male) enrolled in 1 of 9 interviews and focus groups conducted in 2021. Transcribed data were thematically analyzed and organized based on the 6 domains of quality health care by the Institute of Medicine (IOM). Analyzed data revealed 7 themes and 52 codes. Pediatric telehealth visits were perceived as efficient, timely, safe, and generally effective by parents for their child's health care. Participants experienced equal or greater time with their child's care provider via telehealth than through in-person visits. Qualitative results directly align with IOM domains of quality health care and contribute to the growing literature and evidence that may lead to improved telehealth outcomes and better preparedness for emergent public health events.

Functions and outcomes of a clinical medical ethics committee: a review of 100 consults.

CONTEXT: Established in 1997, Summa Health System's Medical Ethics Committee (EC) serves as an educational, supportive, and consultative resource to patients/families and providers, and serves to analyze, clarify, and ameliorate dilemmas in clinical care. In 2009 the EC conducted its 100th consult. In 2002 a Palliative Care Consult Service (PCCS) was established to provide supportive services for patients/families facing advanced illness; enhance clinical decision-making during crisis; and improve pain/symptom management. How these services affect one another has thus far been unclear. OBJECTIVES: This study describes EC consults: types, reasons, recommendations and utilization, and investigates the impact the PCCS may have on EC consult requests or recommendations. METHODS: Retrospective reviews of 100 EC records explored trends and changes in types of consults, reasons for consults, and EC recommendations and utilization. RESULTS: There were 50 EC consults each in the 6 years pre- and post-PCCS. Differences found include: (1) a decrease in number of reasons for consult requests (133-62); (2) changes in top two reasons for EC consult requests from 'Family opposed to withdrawing life-sustaining treatment (LST)' and 'Patient capacity in question' to 'Futility' and 'Physician opposed to providing LST'; (3) changes in top two recommendations given by the EC from 'Emotional Support for Patient/Family' and 'Initiate DNR Order' to 'Comfort Care' and 'Withdraw Treatment.' Overall, 88% of recommendations were followed. CONCLUSION: PCCS availability and growth throughout the hospital may have influenced EC consult requests. EC consults regarding family opposition to withdrawing LST and EC recommendations for patient/family support declined.

Managing in the trenches of consumer care: the challenges of understanding and initiating the advance care planning process.

To better understand how community-based long-term care providers define advance care planning and their role in the process, we conducted 8 focus groups with 62 care managers (social workers and registered nurses) providing care for Ohio's Medicaid waiver program. Care managers shared that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. Better education, resources, and coordination are needed to ensure that consumer preferences are realized.

The Mental Health of Refugees during a Pandemic: Striving toward Social Justice through Social Determinants of Health and Human Rights.

This paper is the second of two in a series. In our first paper, we presented a social justice framework emerging from an extensive literature review and incorporating core social determinants specific to mental health in the age of COVID-19 and illustrated specific social determinants impacting mental health (SDIMH) of our resettled Bhutanese refugee population during the pandemic. This second paper details specific barriers to the SDIMH detrimental to the basic human rights and social justice of this population during this pandemic. The SDIMH, as described, further informs the need for social justice measures and cultural humility in mental healthcare, public health, law, and community engagement. This work concludes with a proposed call to action toward mental health improvement and fair treatment for refugee populations in three core areas: communication and education, social stigma and discrimination, and accessibility and availability of resources.

Examining Illness through Pediatric Poetry and Prose: A Mixed Methods Study.

The purpose of this mixed-methods retrospective study was to characterize the linguistic and narrative properties of texts generated by hospitalized pediatric patients who are experiencing significant illnesses. These young writers voluntarily participated in a narrative intervention through a program at a children's hospital that serves diverse urban and rural populations. The primary aim was to use interpretive theoretical analysis and linguistic analysis to test the following hypotheses: (1) hospital-generated texts have linguistic characteristics consistent with texts written to improve health outcomes; (2) stories told by pediatric patients through poetry and prose can be classified using Frank's illness narrative types, serving as a starting point to situate caregivers into the pediatric writer's world in a moment in time; (3) pediatric stories are authentic stories that yield important insights about patients and their relationships with others despite lacking formal narrative elements (e.g., plot) and form.

The ethical and pedagogical effects of modeling "not-so-universal" precautions.

AIM: We sought to understand current medical students' levels of training and knowledge, and their attitudes regarding universal precautions practices and underlying professional and ethical issues. METHOD: A total of 54 US medical students at two schools were interviewed to determine the level of understanding and training students receive about universal precautions, their feelings about the effectiveness (or ineffectiveness) of universal precautions, the frequency and kinds of universal precautions used by healthcare professionals as observed by medical students, and students' perspectives about the lack of or inconsistent use of universal precautions. RESULTS: Pre-clinical students focused on safe-sex practices among students and professionals, as well as simple, important acts to protect oneself against infection and disease, such as hand-washing. Clinical students, on the other hand, had more exposure to observing and practicing universal precautions, thus presented us with more, in-depth responses pertaining to inconsistent and ineffective use of universal precautions among peers and role models. Several themes were noted from students' responses. CONCLUSION: This study confirms previously acquired data that universal precautions are not consistently or appropriately used by healthcare professionals, it is a significant and novel study in that it reveals a hidden, ethical, and clinical problem in medical education.