Transitioning children using home invasive mechanical ventilation from hospital to home: Discharge criteria, disparities, and ethical considerations.

Children using home invasive mechanical ventilation (HIMV), a valuable therapeutic option for chronic respiratory failure, constitute a growing population. Transitioning children using HIMV from hospital to home care is a complex process that requires a multidisciplinary approach involving healthcare professionals, caregivers, and community resources. Medical stability, caregiver competence, and home environment suitability are essential factors in determining discharge readiness. Caregiver education and training play a pivotal role in ensuring safe and effective home care. Simulation training and staged education progression are effective strategies for equipping caregivers with necessary skills. Resource limitations, inadequate home nursing support, and disparities in available community resources are common obstacles to successful HIMV discharge. International perspectives shed light on diverse healthcare systems and challenges faced by caregivers worldwide. While standardizing guidelines for HIMV discharge may be complex, collaboration among healthcare providers and the development of evidence-based regional guidelines can improve outcomes for children using HIMV and their caregivers. This review seeks to synthesize literature, provide expert guidance based on experience, and highlight components to safely discharge children using HIMV. It further assesses disparities and divergences within regional and international healthcare systems while addressing relevant ethical considerations.

Exchanging words: Engaging the challenges of sharing qualitative research data.

In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States. Over the past 5 y, our research team has engaged stakeholders on QR data sharing, developed software to support data deidentification, produced guidance, and collaborated with the ICPSR data repository to pilot the deposit of 30 QR datasets. In this perspective article, we share important lessons learned by addressing eight clusters of questions on issues such as where, when, and what to share; how to deidentify data and support high-quality secondary use; budgeting for data sharing; and the permissions needed to share data. We also offer a brief assessment of the state of preparedness of data repositories, QR journals, and QR textbooks to support data sharing. While QR data sharing could yield important benefits to the research community, we quickly need to develop enforceable standards, expertise, and resources to support responsible QR data sharing. Absent these resources, we risk violating participant confidentiality and wasting a significant amount of time and funding on data that are not useful for either secondary use or data transparency and verification.

A randomized implementation trial to increase adoption of evidence-informed consent practices.

Introduction: Several evidence-informed consent practices (ECPs) have been shown to improve informed consent in clinical trials but are not routinely used. These include optimizing consent formatting, using plain language, using validated instruments to assess understanding, and involving legally authorized representatives when appropriate. We hypothesized that participants receiving an implementation science toolkit and a social media push would have increased adoption of ECPs and other outcomes. Methods: We conducted a 1-year trial with clinical research professionals in the USA (n = 1284) who have trials open to older adults or focus on Alzheimer's disease. We randomized participants to receive information on ECPs via receiving a toolkit with a social media push (intervention) or receiving an online learning module (active control). Participants completed a baseline survey and a follow-up survey after 1 year. A subset of participants was interviewed (n = 43). Results: Participants who engaged more with the toolkit were more likely to have tried to implement an ECP during the trial than participants less engaged with the toolkit or the active control group. However, there were no significant differences in the adoption of ECPs, intention to adopt, or positive attitudes. Participants reported the toolkit and social media push were satisfactory, and participating increased their awareness of ECPs. However, they reported lacking the time needed to engage with the toolkit more fully. Conclusions: Using an implementation science approach to increase the use of ECPs was only modestly successful. Data suggest that having institutional review boards recommend or require ECPs may be an effective way to increase their use.

Ethical Consequences of Technological Mediation on Parental Decision-Making Experiences in the Neonatal Intensive Care Unit.

The neonatal intensive care unit (NICU) is a morally charged space in which parents may be confronted with difficult decisions about the treatment of their newborns, decisions often complicated and created by the increasing use of technologies. This paper adopts a postphenomenological approach to explore the ethical consequences of technological mediation on parental treatment decision-making in the NICU. Semi-structured interviews were conducted with parents of children who received invasive technological support in the NICU to better understand how they made treatment decisions or decisions about specific interventions during their child's hospitalization. The findings suggest that technological mediation-or the various ways in which humans can interact with their world via technologies-contributes to experiences of ambiguity, ambivalence, and alienation in parental decision-making. The ambiguity of invasive NICU technologies can create uncertainty in a decision, which can then lead to internal ambivalence about which decision to make. Ultimately, this ambiguity and ambivalence may lead to alienation from one's child, as parents are disconnected physically and emotionally from the decision and thus their child. Articulating the effects of technological mediation on parental decision-making is a key step in addressing decisional conflict in neonatal intensive care settings and better supporting parents in their decision-making roles.

Triage Policies at U.S. Hospitals with Pediatric Intensive Care Units.

OBJECTIVES: To characterize the prevalence and content of pediatric triage policies. METHODS: We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators. RESULTS: Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children's hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions. CONCLUSIONS: While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities.

Perceived Benefits of Ethics Consultation Differ by Profession: A Qualitative Survey Study.

BACKGROUND: There are numerous benefits to ethics consultation services, but little is known about the reasons different professionals may or may not request an ethics consultation. Inter-professional differences in the perceived utility of ethics consultation have not previously been studied.Methods: To understand profession-specific perceived benefits of ethics consultation, we surveyed all employees at an urban tertiary children's hospital about their use of ethics committee services (n = 842).Results: Our findings suggest that nurses and physicians find ethics consultations useful for different reasons; physicians were more likely to report normative benefits, while nurses were more likely to report communicative and relational benefits.Conclusions: These findings support an open model of ethics consultation and may also help ethics committees to better understand consultation requests and remain attuned to the needs of various professional groups.

Catholic Perspective on Decision-Making for Critically Ill Newborns and Infants.

In this paper, we discuss the foundational values informing the Catholic perspective on decision-making for critically ill newborns and infants, particularly focusing on the prudent use of medical technologies. Although the Church has consistently affirmed the general good of advances in scientific research and medicine, the technocratic paradigm of medicine may, particularly in cases with severely ill infants, lead to decision-making conflicts and breakdowns in communication between parents and providers. By exploring two paradigm cases, we offer specific practices in which providers can engage to connect with parents and avoid common technologically mediated decision-making conflicts. By focusing on the inherent relationality of all human persons, regardless of debility, and the Christian hope in the life to come, we can make decisions in the midst of the technocratic paradigm without succumbing to it.

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.

Multiple factors can facilitate or impede the fulfillment of communication functions in pediatric cancer. In this systematic review, we evaluated 109 studies from the preceding 20 years that presented qualitative or quantitative evidence of barriers or facilitators to communication in pediatric cancer. Using a multilevel framework developed in our prior study, we then analyzed and categorized the levels of barriers and facilitators identified in included studies. The vast majority of studies focused on individual-level barriers, rather than team, organization/system, collaborating hospital, community, or policy-level barriers. Future studies should explore the full range of factors that affect communication.

A Content Analysis of 100 Qualitative Health Research Articles to Examine Researcher-Participant Relationships and Implications for Data Sharing.

We conducted a qualitative content analysis of health science literature (N = 100) involving qualitative interviews or focus groups. Given recent data sharing mandates, our goal was to characterize the nature of relationships between the researchers and participants to inform ethical deliberations regarding qualitative data sharing and secondary analyses. Specifically, some researchers worry that data sharing might harm relationships, while others claim that data cannot be analyzed absent meaningful relationships with participants. We found little evidence of relationship building with participants. The majority of studies involve single encounters (95%), lasting less than 60 min (59%), with less than half of authors involved in primary data collection. Our findings suggest that relationships with participants might not pose a barrier to sharing some qualitative data collected in the health sciences and speak to the feasibility in principle of secondary analyses of these data.

Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives.

BACKGROUND: Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication. METHODS: The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology. RESULTS: The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers. CONCLUSIONS: Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology. LAY SUMMARY: Clinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.

Characteristics of uncertainty in advanced pediatric cancer conversations.

OBJECTIVES: To describe the initiation, response, and content of communication about uncertainty in advanced pediatric cancer. METHODS: Qualitative analysis of 35 audio-recorded outpatient consultations between physicians and families of children whose cancer recently progressed. We defined uncertainty as "future-oriented lack of clarity in which answers are unknown to all participants involved in the conversation." RESULTS: Conversations contained a median of 14 (interquartile range 8.5-19) uncertainty statements related to 6 topics: appropriateness of treatments, acute toxicities and morbidities, prognosis or response to treatment, diagnostic uncertainty, logistical uncertainty, and long-term toxicities. Physicians initiated 63 % of statements (303/489), parents initiated 33 % (165/489), and children initiated 2% (10/489). We identified 14 unique responses to uncertainty: 11 responses provided space for discussion, 3 responses reduced space. Physicians most commonly responded by providing additional information (38 %, 361/947). Parents most often responded with continuing statements, such as "um" or "yeah" (50 %, 313/622). Children seldom responded (<1%, 12/1697). CONCLUSION: Physicians initiated most uncertainty discussions, and their responses often provided space for further discussion. Children were seldom involved in these conversations. PRACTICE IMPLICATIONS: Clinicians should consider maintaining open conversations about uncertainties in advanced pediatric cancer, and consider engaging children in these discussions.

The Suffering Child: Claims of Suffering in Seminal Cases and What To Do About Them.

In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient's suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child's suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term "suffering," and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the "suffering child" continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child.

Addressing complex hospital discharge by cultivating the virtues of acknowledged dependence.

Every day around the country, patients are discharged from hospitals without difficulty, as the interests of the hospital and the patient tend to align: both the hospital and the patient want the patient to leave and go to a setting that will promote the patient's continued recovery. In some cases, however, this usually routine process does not go quite as smoothly. Patients may not want to leave the hospital, or they may insist on an unsafe discharge plan. In other cases, there may simply be no good place for the patient to go. These complex hospital discharge situations often involve ethical, legal, financial, and practical considerations, but the ethical issues inherent in these dilemmas have received only sporadic attention from clinical ethicists at best, leaving patients, providers, administrators, and caregivers unsure about what to do. When the ethical issues are in fact brought to light, analysis usually proceeds based on a consideration of the principles of autonomy, beneficence, nonmaleficence, and justice. However, principled analysis often fails to present patients and providers with a satisfactory solution, as the principles inevitably conflict (for example, when the patient's autonomous desire to remain in the hospital conflicts with the principles of beneficence and justice). In this paper, I argue that difficult discharges are ethical dilemmas worthy of scholarly attention that goes beyond principlism, and I argue that providers and those involved in discharge planning ought to cultivate what philosopher Alasdair MacIntyre calls "virtues of acknowledged dependence" in order to care for these patients and their families. I first trace the current conversation about difficult discharge and show that the principled approach to resolving discharge dilemmas is not sufficient. I then argue that a new approach is needed, and to that end, I offer practical ways in which MacIntyre's account of the virtues of acknowledged dependence may help patients, providers, and family members to navigate issues of difficult discharge.

Communication in Pediatric Oncology: A Qualitative Study.

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives. METHODS: Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding. RESULTS: We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred. CONCLUSIONS: Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.

Emotional Communication in Advanced Pediatric Cancer Conversations.

CONTEXT: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown. OBJECTIVES: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer. METHODS: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences. RESULTS: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%). CONCLUSION: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.

Core Functions of Communication in Pediatric Medicine: an Exploratory Analysis of Parent and Patient Narratives.

Communication in pediatrics is important for psychological well-being and health outcomes. However, consensus is lacking regarding the core functions of communication in pediatrics. The aims of this study were (1) to evaluate whether and how core communication functions from adult oncology apply to communication in pediatric medicine and (2) to examine whether any unique core communication functions exist in pediatric medicine. We analyzed 36 narratives written by parents (n = 23) or former patients (n = 13) describing pediatric communication experiences with clinicians that were published in Narrative Inquiry in Bioethics. Utilizing deductive and inductive coding, we evaluated narratives for evidence of core communication functions previously documented in adult oncology. We also evaluated for novel functions not represented in adult oncology. We identified the presence of all adult core communication functions in pediatric narratives. We also found evidence of a novel function, "engendering solidarity and validation." We report clinician behaviors that appeared to facilitate or impair these core functions. Core communication functions in adult oncology apply to communication in pediatric medicine, but we also identified a novel communication function in pediatrics.

More Than "Spending Time with the Body": The Role of a Family's Grief in Determinations of Brain Death.

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath.

The Pitfalls of Proceduralism: An Exploration of the Goods Internal to the Practice of Clinical Ethics Consultation.

In an age of professionalization and specialization, the practice of clinical ethics is facing an identity crisis. Are clinical ethicists moral experts, ethics experts, or merely quasi-lawyers giving legal advice? Are they extensions of the hospital, always working to advance the hospital's interests? Or is there another option? Since 1998, when the American Society for Bioethics and Humanities (ASBH) first issued its Core Competencies for Healthcare Ethics Consultation, there has been debate about the role of standardization and proceduralism in clinical ethics consultation. Now, as ASBH continues to move forward with its credentialing program, proceduralism in clinical ethics must be critically examined. In this paper, I argue that the proceduralist approach to clinical ethics consultation, as espoused by the ASBH's call for credentialing, creates a demeaning experience for all parties involved and precludes goods internal to the practice of clinical ethics consultation from being actualized. As a practice embedded in medicine and in institutions such as the hospital, clinical ethics consultation must define and examine its own goods in order to bring about more than a sterile, law-like solution to difficult moral quandaries, as these sterile solutions leave patients, families, and providers unsatisfied, abandoned, and disappointed. Thus, in an effort to push back against this proceduralism in clinical ethics consultation, I will offer a preliminary exploration of what these goods might be.