Does participation in ethics discussions have an impact on ethics decision-making? A cross-sectional study among healthcare professionals in paediatric oncology.

PURPOSE: The overall aim of this study was to describe perceptions of the decision-making process in relation to participation/non-participation in ethics discussions among healthcare professionals in paediatric oncology. METHODS: Healthcare professionals, working at three paediatric units where ethics discussions where performed answered a study-specific questionnaire focusing on perceptions of involvement, influence, responsibility and understanding of ethics decision-making. Statistical analyses included descriptive statistics, non-parametric paired t-tests and correlation tests. RESULTS: Participation in ethics discussions was related to perceptions of greater involvement and the possibility of influencing decisions, as well as formal/shared responsibility for the ethics decisions related to patient care. Medical doctors and registered nurses perception of involvement in decisions, possibility to influence and responsibility decreased when they were not present during the ethics discussion or when no ethics discussion was conducted at all. Healthcare professionals had a generally good understanding of the ethical issues and the ethics decisions. The whole group considered medical doctors to be the most important participants in the ethics discussions, followed by patients/family. Healthcare professionals wanted more teamwork and viewed ethics discussions as very helpful for teamwork when dealing with ethical issues in paediatric oncology. CONCLUSIONS: Ethics discussions in paediatric oncology practice increases the involvement within and the understanding of the decision-making process about ethical decisions. The understanding is not always dependent on participation, indicating a great trust in team members. Based on these findings the implementation of a structure for ethics support in paediatric oncology where patients/families are integrated is recommended.

The case for information fiduciaries: The implementation of a data ethics checklist at Seattle Children's Hospital.

There is little debate about the importance of ethics in health care, and clearly defined rules, regulations, and oaths help ensure patients' trust in the care they receive. However, standards are not as well established for the data professions within health care, even though the responsibility to treat patients in an ethical way extends to the data collected about them. Increasingly, data scientists, analysts, and engineers are becoming fiduciarily responsible for patient safety, treatment, and outcomes, and will require training and tools to meet this responsibility. We developed a data ethics checklist that enables users to consider the possible ethical issues that arise from the development and use of data products. The combination of ethics training for data professionals, a data ethics checklist as part of project management, and a data ethics committee holds potential for providing a framework to initiate dialogues about data ethics and can serve as an ethical touchstone for rapid use within typical analytic workflows, and we recommend the use of this or equivalent tools in deploying new data products in hospitals.

Moral distress in pediatric otolaryngology: A pilot study.

OBJECTIVES: SUBJECTS/METHODS: Moral distress is defined as "when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action". The Moral Distress Survey-Revised (MDS-R) is a validated 21-question survey measuring moral distress in pediatrics. The MDS-R was anonymously distributed to pediatric otolaryngology faculty and fellows at a tertiary institution. Descriptive statistics, bivariate and multivariate analysis were performed. RESULTS: Response rate was 89% (16/18). Overall MDS-R score was 40 (range 14-94), which is lower than that found in the literature for pediatric surgeons (reported mean 72), pediatric intensivists (reported means 57-86), and similar to pediatric oncologists (reported means 42-52). Fellows had a significantly higher level of moral distress than faculty (mean 69 vs. 26, p < 0.05). Factors leading to higher degrees of distress involved communication breakdowns and pressure from administration/insurance companies to reduce costs. CONCLUSION: Pediatric Otolaryngologists at our institution have lower degrees of moral distress compared to other pediatric subspecialists. Fellows had higher levels of distress compared to faculty. Further research is necessary to determine degrees of distress across institutions and to determine its impact on the wellness of pediatric otolaryngologists.

Ethical Issues Considered When Establishing a Pediatrics Gender Surgery Center.

As part of establishing a gender surgery center at a pediatric academic hospital, we undertook a process of identifying key ethical, legal, and contextual issues through collaboration among clinical providers, review by hospital leadership, discussions with key staff and hospital support services, consultation with the hospital's ethics committee, outreach to other institutions providing transgender health care, and meetings with hospital legal counsel. This process allowed the center to identify key issues, formulate approaches to resolving those issues, and develop policies and procedures addressing stakeholder concerns. Key issues identified during the process included the appropriateness of providing gender-affirming surgeries to adolescents and adults, given the hospital's mission and emphasis on pediatric services; the need for education on the clinical basis for offered procedures; methods for obtaining adequate informed consent and assent; the lower and upper acceptable age limits for various procedures; the role of psychological assessments in determining surgical eligibility; the need for coordinated, multidisciplinary patient care; and the importance of addressing historical access inequities affecting transgender patients. The process also facilitated the development of policies addressing the identified issues, articulation of a guiding mission statement, institution of ongoing educational opportunities for hospital staff, beginning outreach to the community, and guidance as to future avenues of research and policy development. Given the sensitive nature of the center's services and the significant clinical, ethical, and legal issues involved, we recommend such a process when a establishing a program for gender surgery in a pediatric institution.

How Should Health Care Organizations and Communities Work Together to Improve Neighborhood Conditions?

In the past few decades, scholars have begun to establish ethical principles for public health engagement. A key tension has been how to reconcile public health improvement with local autonomy in decision making so as to express respect for community members' on-the-ground experience. This article describes the experience of one children's hospital in learning to ethically engage a surrounding community in conversations about housing development in partnership with a local faith-based development organization.

The ethical climate in paediatric oncology-A national cross-sectional survey of health-care personnel.

OBJECTIVE: To describe health-care personnel's (HCP's) perceptions of the ethical climate at their workplace in paediatric oncology. METHODS: A cross-sectional survey was conducted using the Swedish version of the shortened Hospital Ethical Climate Survey (HECS-S). HCP at all six paediatric oncology centres (POCs) in Sweden were invited to participate. Analysis included descriptive statistics, the Mann-Whitney U test (differences between groups) and Spearman's rank correlation. Informed consent was assumed when the respondents returned the survey. RESULTS: A high response rate was achieved as 278 HCP answered the questionnaire. Medical doctors perceived the ethical climate to be more positive than registered nurses and nursing assistants. At the POC with the significantly lowest values concerning immediate manager, no significant correlation with the other items was found. At the POC with the poorest ethical climate, HCP also had the lowest perception of the possibility of practicing ethically good care. CONCLUSIONS: Differences between centres and professional groups have been demonstrated. A negative perception of the immediate manager does not necessarily mean that the ethical climate is poor, but the manager's ability to provide the conditions for an open dialogue within the health-care team is key to achieving an ethical climate.

Medical Assistance in Dying at a paediatric hospital.

This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older-a small but important subsection of the population our hospital serves-we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.

Ethics Review of Projects (ERoP): A Conceptual Framework.

Ethical risks are routinely assessed and mitigated in research studies. The same risks can exist in program evaluations and quality improvement initiatives and yet may not be routinely and comprehensively addressed. The authors present a conceptual framework that can help organizations develop comprehensive ethics review processes for non-research knowledge-generating projects (NRKGPs). They provide strategies that can be implemented in three progressive domains and illustrate the framework's application using two examples of health organizations with existing NRKGP ethics review processes. They conclude the article by discussing some lessons learned.

Evaluating the Inpatient Pediatric Ethical Consultation Service.

OBJECTIVES: Pediatric ethical consultation services (ECSs) have been proliferating at medical centers, with little data available on evaluating their implementation. The objective of this study was to evaluate the pediatric ECS and understand the ethical issues occurring within a single quaternary-level pediatric hospital. METHODS: A retrospective chart review of documented ethics consultations at a large pediatric hospital from November 2010 to November 2013 was performed and data was abstracted per the US Department of Veterans Affairs' Domains of Ethics in Health Care. An anonymous, prospective survey regarding ethical issues encountered was distributed electronically to ∼3500 inpatient staff from November 2013 through January 2014. Ethical domains, demographics, feelings of distress by staff, and location of occurrence data were collected. These data were compared with formally documented ethics consults from the retrospective chart review and ECS activity during the same period. RESULTS: A total of 47 ethics consults were documented between 2010 and 2013, primarily in the domains of end-of-life care (19; 40%) and shared decision-making (17; 36%). Sixty-three staff members (92% female; 42% nurses; 20% attending physicians) logged an encountered ethical issue between November 2013 and January 2014, corresponding to only 5 documented ethics consults in the same time period. Domains included end-of-life care (18; 28.5%), shared decision-making (13; 20.6%), everyday workplace (11; 17.4%), professionalism (8; 12.6%), and resource allocation (7; 11%). Eighty-one percent of subjects reported personal or professional distress. CONCLUSIONS: On the basis of this single-center study in which we reviewed formal documentation, we determined that formal pediatric ECSs are underused, particularly for ethical domains that cause staff members moral distress.

Dilema éticos en la práctica de la medicina infantil / Ethical dilemas in pediatrics

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Five challenges to ethical communication for interprofessional paediatric practice: A social work perspective.

In paediatric clinical care, what is said to a parent or carer as well as when, where, and how it is said, directly advances or diminishes parents' capacities to understand available options and to contribute to decisions about treatment for their child. This makes interprofessional and patient communication an ethical endeavour. Social workers are uniquely situated to observe, participate in, and provide an active link in the communication between families and other health team members. This article reports phenomenological research exploring ethical issues encountered by social workers in their everyday practice communicating with families and other health professionals in a paediatric hospital context in Australia. Data were collected via semi-structured interviews with nine social workers and analysed thematically. Participants described two main communication-based roles: to support families through information provision and to contribute collaboratively to the interprofessional team involved in caring for a child and family. We grouped participants' descriptions of conflict between these roles into five main "communication challenges": (1) holding troublesome knowledge; (2) the need for diplomacy; (3) conciliation; (4) every man and his dog in family meetings; and (5) systems and processes presenting a brick wall. The five communication challenges provide empirically derived examples of how communication occurring within interprofessional health teams and between individual clinicians and parents can act to diminish or enhance parents' experience of care for their hospitalised child. Identifying these challenges may help to inform how communication within interprofessional teams and between clinicians and patients can benefit children and their parents.

Centros de referencia: Hospital Infantil Miguel Servet / Reference centers: Hospital Infantil Universitario Miguel Servet

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Identifying the Unique Aspects of Adolescent and Young Adult Palliative Care: A Case Study to Propel Programmatic Changes in Pediatric Hospitals.

Using a case study, in this article we seek to highlight how the distinct developmental needs of adolescent and young adult patients facing a life-threatening condition require a different approach to patient care by pediatric health care workers. The case underscores pitfalls in using a pediatric construct of care in areas of pain management, social stressors, and advanced care planning, and suggests programs to implement for improvement, including partnership with psychiatry, substance abuse, and palliative care specialists.

Health outcomes in US children with abdominal pain at major emergency departments associated with race and socioeconomic status.

OBJECTIVE: Over 9.6 million ED visits occur annually for abdominal pain in the US, but little is known about the medical outcomes of these patients based on demographics. We aimed to identify disparities in outcomes among children presenting to the ED with abdominal pain linked to race and SES. METHODS: Data from 4.2 million pediatric encounters of abdominal pain were analyzed from 43 tertiary US children's hospitals, including 2.0 million encounters in the emergency department during 2004-2011. Abdominal pain was categorized as functional or organic abdominal pain. Appendicitis (with and without perforation) was used as a surrogate for abdominal pain requiring emergent care. Multivariate analysis estimated likelihood of hospitalizations, radiologic imaging, ICU admissions, appendicitis, appendicitis with perforation, and time to surgery and hospital discharge. RESULTS: Black and low income children had increased odds of perforated appendicitis (aOR, 1.42, 95% CI, 1.32- 1.53; aOR, 1.20, 95% CI 1.14 - 1.25). Blacks had increased odds of an ICU admission (aOR, 1.92, 95% CI 1.53 - 2.42) and longer lengths of stay (aHR, 0.91, 95% CI 0.86 - 0.96) than Whites. Minorities and low income also had lower rates of imaging for their appendicitis, including CT scans. The combined effect of race and income on perforated appendicitis, hospitalization, and time to surgery was greater than either separately. CONCLUSIONS: Based on race and SES, disparity of health outcomes exists in the acute ED setting among children presenting with abdominal pain, with differences in appendicitis with perforation, length of stay, and time until surgery.

Actual implementation of sick children's rights in Italian pediatric units: a descriptive study based on nurses' perceptions.

BACKGROUND: Several charters of rights have been issued in Europe to solemnly proclaim the rights of children during their hospital stay. However, notwithstanding such general declarations, the actual implementation of hospitalized children's rights is unclear. The purpose of this study was to understand to which extent such rights, as established by the two main existing charters of rights, are actually implemented and respected in Italian pediatric hospitals and the pediatric units of Italian general hospitals, as perceived by the nurses working in them. METHODS: Cross-sectional study. A 12-item online questionnaire was set up and an invitation was sent by email to Italian pediatric nurses using professional mailing lists and social networks. Responders were asked to score to what extent each right is respected in their hospital using a numeric scale from 1 (never) to 5 (always). RESULTS: 536 questionnaires were returned. The best implemented right is the right of children to have their mothers with them (mean score 4.47). The least respected one is the right of children to express their opinion about care (mean 3.01). Other rights considered were the right to play (4.29), the right to be informed (3.95), the right to the respect of privacy (3.75), the right to be hospitalized with peers (3.39), the right not to experience pain ever (3.41), and the right to school (3.07). According to the majority of nurses, the most important is the right to pain relief. Significant differences in the implementation of rights were found between areas of Italy and between pediatric hospitals and pediatric units of general hospitals. CONCLUSION: According to the perception of pediatric nurses, the implementation of the rights of hospitalized children in Italian pediatrics units is still limited.

Comparación de los conocimientos sobre dolor infantil en 2 poblaciones de profesionales de enfermería / Comparison between 2 groups of nursing professionals on the knowledge of pediatric pain

OBJETIVO: Comparar los conocimientos sobre dolor infantil entre un grupo de profesionales de enfermería de un hospital pediátrico y otro de un hospital general. MATERIAL Y MÉTODOS: Estudio descriptivo basado en la utilización de un cuestionario validado para la valoración de los conocimientos y actitudes del personal de enfermería sobre el dolor pediátrico (Pediatric Nurses' Knowledge and Attitude Survey Regarding Pain [PNKAS]). Se distribuyó el cuestionario entre el personal de enfermería de un hospital pediátrico y de un hospital general. RESULTADOS: La puntuación obtenida en el hospital pediátrico vs. hospital general fue: media, 51,7 vs. 47,2%, intervalo de confianza 95%: 47,5-56% vs. 43,6-50,8% (p = 0,098). CONCLUSIONES: No existió una mejor puntuación en el cuestionario PNKAS en la enfermería que trabaja exclusivamente con niños que en la enfermería que trabaja con población general. Resulta necesario mejorar la formación sobre el dolor pediátrico en la enfermería que atiende al niño enfermo hospitalizado

OBJECTIVE: To compare infant pain knowledge between a group of nurses who work in a pediatric hospital and one that works in a general hospital. MATERIAL AND METHODS: Descriptive study based on the use of a validated questionnaire for assessing the knowledge and attitudes of nurses about pediatric pain (Pediatric Nurses Knowledge and Attitude Survey Regarding Pain [PNKAS]). PNKAS questionnaire was distributed to the nursing staff of a pediatric hospital and a general hospital and the results were compared. RESULTS: The average score obtained in the pediatric vs. the general hospital was: mean, 51.7% vs. 47.2%, 95% confidence interval, 47.5 to 56% vs. 43.6 to 50.8% (P = .098). CONCLUSIONS: There were no differences between the scores in the PNKAS questionnaire between nurses working exclusively with children and nurses working with general population. Training on pediatric pain needs to be improved in nurses caring for sick children