Opioid prescribing for cancer pain in Latin America: systematic review.

OBJECTIVE: To explore opioid prescribing patterns for cancer pain in Latin America (LA). METHODS: A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Relevant databases, including MEDLINE, EMBASE, PubMed, LILACS and Scielo, were searched from inception to June 2023. Empirical studies of opioid prescription patterns in adult palliative care patients with cancer pain were included. Methodological quality was assessed using the Effective Public Health Practice Project tool. Data were analysed using narrative synthesis. Descriptive statistical analyses were conducted using SPSS V.28 (IBM). Categorical variables were summarised using frequencies and percentages and continuous variables as means or medians. RESULTS: Seventeen studies from six countries were included. Ten were observational, while seven were experimental, including five randomised controlled trials (RCT) and two non-RCT. Most were low or moderate methodological quality. Out of 7809 patients, morphine (54%) and tramadol (18%) were the most prescribed opioids. The median of morphine equivalent daily dose was 26 mg (IQR 26-41). CONCLUSION: Latin America shows lower opioid consumption rates compared with high-income countries for control pain management (CPM). More rigorous research on CPM in LA is needed. Additionally, a comprehensive review of opioid prescription patterns, including non-cancer diagnoses, is necessary.

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children's hospital.

BACKGROUND: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare professionals caring for children with LLC is needed. AIM: To explore the barriers paediatricians face in initiating and implementing palliative and end-of-life care for children with LLC. METHODS: Due to the challenges of COVID-19, the study was performed as a service evaluation using semi-structured interviews and an online questionnaire with consultant paediatricians in general paediatrics, community paediatrics and multiple subspecialties at a UK children's hospital between December 2020 and August 2021. Twelve interviews and 18 online questionnaires were completed. Interviews were analysed using reflexive thematic analysis, and descriptive statistics were used for questionnaire responses. RESULTS: Recurring themes from both data sets were further analysed and five themes were developed: (1) Problems with the leadership of palliative and end-of-life care; (2) Problems with preparing advanced care plans; (3) Lack of training in paediatric palliative care and advanced communication; (4) Problems communicating with families; and (5) Lack of recognition of children with LLC and high-profile cases. CONCLUSIONS: We found that the barriers to effective palliative and end-of-life planning are multifaceted and pervasive, so healthcare professionals must establish clearer pathways to overcome them. Approaches suggested included (1) discussing palliative care for children with LLC at professional encounters, for example, departmental meetings, peer-review meetings and morbidity and mortality meetings and (2) advanced communication training in palliative and end-of-life care.

What is the impact of high-profile end-of-life disputes on paediatric intensive care trainees?

INTRODUCTION: This study explores UK paediatric intensive care (PIC) trainees' thoughts and feelings about high-profile end-of-life cases recently featured in the press and social media and the impact on their career intentions. METHODS: Semi-structured interviews were conducted with nine PIC-GRID trainees (April to August 2021). Interview transcripts were analysed using thematic analysis. RESULTS: Six main themes were identified: (1) All participants wished to do what was best for the child, feeling conflicted if this meant disagreeing with parents. (2) Interviewees felt unprepared and expressed deep concern about the effect of high-profile cases on their future career; all had reconsidered their training in PIC due to concerns about future high-profile end-of-life disputes, despite this all were still in training. (3) Specific training on the ethical and legal nuances of such cases is required, alongside targeted communication skills. (4).All cases are unique. (5) All had purposefully minimised their social media presence. (6) Working in a supportive environment is crucial, underscoring the importance of clear and unified team communication. CONCLUSION: UK PIC trainees feel unprepared and anxious about future high-profile cases. A parallel can be drawn to child protection improvements following significant educational investment after government reports into preventable child abuse deaths. Models for supporting trainees and establishing formal PIC training are required to improve trainees' confidence and skills in managing high-profile cases. Further research with other professional groups, the families involved and other stakeholders would provide a more rounded picture.

North Thames multi-centre service evaluation: Ethical considerations during COVID-19.

Objectives: During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics. Design: A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric Network, a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues. Results: Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government 'stay at home' advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns. Conclusion: Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children.

Ethical Challenges Experienced by Healthcare Workers Delivering Clinical Care during Health Emergencies and Disasters: A Rapid Review of Qualitative Studies and Thematic Synthesis.

Background: The COVID-19 pandemic has posed several ethical challenges worldwide. Understanding care providers' experiences during health emergencies is key to develop comprehensive ethical guidelines for emergency and disaster circumstances.Objectives: To identify and synthetize available empirical data on ethical challenges experienced by health care workers (HCWs) providing direct patient care in health emergencies and disaster scenarios that occurred prior to COVID-19, considering there might be a significant body of evidence yet to be reported on the current pandemic.Methods: A rapid review of qualitative studies and thematic synthesis was conducted. Medline and Embase were searched from inception to December 2020 using "public health emergency" and "ethical challenges" related keywords. Empirical studies examining ethical challenges experienced by frontline HCWs during health emergencies or disasters were included. We considered that ethical challenges were present when participants and/or authors were uncertain regarding how one should behave, or when different values or ethical principles are compromised when making decisions.Outcome: After deduplication 10,160 titles/abstracts and 224 full texts were screened. Twenty-two articles were included, which were conducted in 15 countries and explored eight health emergency or disaster events. Overall, a total of 452 HCWs participants were included. Data were organized into five major themes with subthemes: HCWs' vulnerability, Duty to care, Quality of care, Management of healthcare system, and Sociocultural factors.Conclusion: HCWs experienced a great variety of clinical ethical challenges in health emergencies and disaster scenarios. Core themes identified provide evidence-base to inform the development of more comprehensive and supportive ethical guidelines and training programmes for future events, that are grounded on actual experiences of those providing care during emergency and disasters.

Clinical ethics support services in paediatric practice: protocol for a mixed studies systematic review on structures, interventions and outcomes.

INTRODUCTION: Clinical ethics support services (CESS) have been developing worldwide with growing interest in evaluating their quality. Paediatric-specific CESSs (p-CESS) have received little attention, and evidence from adult services might not be generalisable. Evidence on service models and practices is crucial to inform further research and debate on quality evaluation and minimum standards for p-CESSs. We aim to systematically identify, appraise and synthesise evidence for p-CESS structures, processes and outcomes. METHODS AND ANALYSIS: We will conduct a mixed-studies systematic review including peer-reviewed empirical studies published in English or Spanish language providing data on the evaluation and/or impact on any aspect of p-CESS. We will search seven electronic databases: MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINHAL, without filters applied. Search terms will be related to "clinical ethics support" AND "paediatrics" AND "structure/process/outcome". Reference and citation list of included studies will be handsearched. A 10% random sample of retrieved titles/abstracts and all full texts will be independently dual-screened. We will conduct narrative and thematic synthesis for quantitative and qualitative data, respectively, following sequential explanatory synthesis guided by Donabedian's framework of structure, process and outcomes. Quality will be assessed using the Mixed-Methods Appraisal Tool (2018). The review will be reported using the adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses for reporting systematic reviews of qualitative and quantitative evidence template. Stakeholders will be involved twice in the review process; prior to data extraction and synthesis and after preliminary results. ETHICS AND DISSEMINATION: As a systematic review of published data, no ethical approval is necessary. Results will be published in a relevant academic peer-reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42021280978.

Clinical ethics support services during the COVID-19 pandemic in the UK: a cross-sectional survey.

BACKGROUND: The COVID-19 pandemic highlighted the need for clinical ethics support provision to ensure as far as possible fair decision making and to address healthcare workers' moral distress. PURPOSE: To describe the availability, characteristics and role of clinical ethics support services (CESSs) in the UK during the COVID-19 pandemic. METHOD: A descriptive cross-sectional online survey was developed by the research team. The survey included questions on CESSs characteristics (model, types of support, guidance development, membership, parent and patient involvement) and changes in response to the pandemic. Invitations to participate were widely circulated via National Health Service institutional emails and relevant clinical ethics groups known to the research team. RESULTS: Between October 2020 and June 2021, a total of 53 responses were received. In response to the pandemic, new CESSs were established, and existing provision changed. Most took the form of clinical ethics committees, groups and advisory boards, which varied in size and membership and the body of clinicians and patient populations they served. Some services provided moral distress support and educational provision for clinical staff. During the pandemic, services became more responsive to clinicians' requests for ethics support and advice. More than half of respondents developed local guidance and around three quarters formed links with regional or other local services. Patient and/or family members' involvement in ethics discussions is infrequent. CONCLUSIONS: The pandemic has resulted in an expansion in the number of CESSs. Though some may disband as the pandemic eases, the reliance on CESSs during the pandemic demonstrates the need for additional research to better understand the effectiveness of their various forms, connections, guidance, services and modes of working and for better support to enhance consistency, transparency, communication with patients and availability to clinical staff.

Defining ethical challenge(s) in healthcare research: a rapid review.

BACKGROUND: Despite its ubiquity in academic research, the phrase 'ethical challenge(s)' appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of 'ethical challenge(s)' and closely related terms as used in current healthcare research literature. METHODS: Rapid review to identify peer-reviewed reports examining 'ethical challenge(s)' in any context, extracting data on definitions of 'ethical challenge(s)' in use, and synonymous use of closely related terms in the general manuscript text. Data were analysed using content analysis. Four databases (MEDLINE, Philosopher's Index, EMBASE, CINAHL) were searched from April 2016 to April 2021. RESULTS: 393 records were screened, with 72 studies eligible and included: 53 empirical studies, 17 structured reviews and 2 review protocols. 12/72 (17%) contained an explicit definition of 'ethical challenge(s), two of which were shared, resulting in 11 unique definitions. Within these 11 definitions, four approaches were identified: definition through concepts; reference to moral conflict, moral uncertainty or difficult choices; definition by participants; and challenges linked to emotional or moral distress. Each definition contained one or more of these approaches, but none contained all four. 68/72 (94%) included studies used terms closely related to synonymously refer to 'ethical challenge(s)' within their manuscript text, with 32 different terms identified and between one and eight different terms mentioned per study. CONCLUSIONS: Only 12/72 studies contained an explicit definition of 'ethical challenge(s)', with significant variety in scope and complexity. This variation risks confusion and biasing data analysis and results, reducing confidence in research findings. Further work on establishing acceptable definitional content is needed to inform future bioethics research.

Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review.

BACKGROUND: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. AIM: To synthesize and appraise the evidence about patients with advanced illness and their caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America. DESIGN: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. DATA SOURCES: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. RESULTS: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver's role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients' preference to be informed about their condition contrasting with caregivers' reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. CONCLUSION: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.

Work of a paediatric bioethics centre during the COVID-19 pandemic first phase.

OBJECTIVES: Decisions with an ethical component have been controversial during the COVID-19 pandemic, whether leaked intensive care unit (ICU)-rationing documents, transfer of people to care-homes to 'protect the National Health Service' or the duty to treat patients despite inadequate personal protective equipment. To counter criticism of ethics per se, and to help those planning ethics support we describe the practical work of a children's hospital bioethics team in supporting children, families and clinicians during this unprecedented period. DESIGN/SETTING: Three phases of activity: (i) preparation: we composed several documents to support/guide hospital teams and, together with colleagues, provided them to regional inpatient, community and hospice settings. We adapted existing mechanisms to combat workforce moral injury; (ii) activity (March-June 2020): was highest in our rapid response service where children/families consider difficult treatment decisions with medical teams. Education provided 'pandemic webcasts' on decision-making and broader child-health concerns. Staff support was essential, especially for those deployed to overwhelmed local adult ICUs. Research ascertained young people's views on the pandemic; (iii) reflection: focussed on (a) research about future re-deployment to adult services and minimisation of moral distress/injury, (b) remote video-conferencing-parents'/participants' experience/ability to consider complex ethical issues and (c) role of faith/non-faith in society's recovery and children's views. MAIN OUTCOME/CONCLUSIONS: Our bioethics team's role during the pandemic included: case reviews via video-conferencing, many involving innovative therapy for severely unwell children with COVID-19/Paediatric-Inflammatory-Multisystem Syndrome-Temporally associated with SARS-CoV-2 together with their parents; processes to protect healthcare staff from moral harm and research/educational activity focused on paediatric-specific ethical arising during the pandemic.

Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice.

BACKGROUND: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. AIM: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. DESIGN: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. DATA SOURCES: Seven databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. RESULTS: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). CONCLUSION: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.

Young people's views on their role in the COVID-19 pandemic and society's recovery from it.

OBJECTIVE: There has been little formal exploration of how young people see their role in the COVID-19 pandemic. DESIGN/SETTING: Focus-group discussion with 15 Children's Hospital Young People's Forum members (23/5) to explore their perspective on the impact of COVID-19 on both their lives and those of their community, on school closures, and the role they wished to play in society's recovery from the pandemic. Audio recordings were transcribed verbatim using NVivo Software and analysed using an inductive thematic analysis approach. OUTCOME: Four major themes identified: (1) Awareness of pandemic's impact on others: participants showed mature awareness of the effects on broader society, especially the elderly, socially disadvantaged and parents. (2) Perceived impact on their own lives: principal concerns were the educational and practical repercussions of school closures and social isolation, including effects on educational prospects. (3) Views about school reopening: young people understood the broader rationale for school reopening and were generally positive about it, but expressed concerned about their safety and that of others. (4) Communication issues: a need for clear, concise, understandable information readily accessible for young people was expressed. Up to now, they felt passive recipients rather than participants. CONCLUSION: Young people were concerned about their future, their family and broader society, consistent with a high level of moral development. They want to be active participants in social recovery, including concepts around return to school but require appropriate information and a means by which their voices can be heard. The alternative suggested roles as pawns or pathfinders were discounted.

Real-world ethics in palliative care: protocol for a systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice.

INTRODUCTION: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been synthesised. This evidence is crucial to inform education and training and adequately support staff. The aim of this systematic review is to synthesise the evidence regarding the ethical challenges which SPCPs encounter during clinical practice. METHODS AND ANALYSIS: We will conduct a systematic review with narrative synthesis of empirical studies that use inductive methods to describe the ethical challenges reported by SPCPs. We will search multiple databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) without time, language or geographical restrictions. Keywords will be developed from scoping searches, consultation with information specialists and reference to key systematic reviews in palliative care and bioethics. Reference lists of included studies will be hand-searched. 10% of retrieved titles and abstracts will be independently dual screened, as will all full text papers. Quality will be dual assessed using the Mixed-Methods Appraisal Tool (2018). Narrative synthesis following Popay et al (2006) will be used to synthesise findings. The strength of resulting recommendations will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach for qualitative evidence (GRADE-CERQual). ETHICS AND DISSEMINATION: As this review will include only published data, no specific ethical approval is required. We anticipate that the systematic review will be of interest to palliative care practitioners of all backgrounds and educators in palliative care and medical ethics. Findings will be presented at conferences and published open access in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: CRD42018105365.