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.

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.

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.

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.

Repercusiones del Síndrome de Desgaste Profesional en los ámbitos: personal, familiar, social, laboral y la relación con factores no motivacionales en Licenciadas de Enfermería del Hospital del Niño/a, Manuel Ascencio Villarroel, Cochabamba primer trimestre 2011 / Implications of burnout syndrome in the areas: personal, familial, social, labor and related motivational factors Licensed Children's Hospital Nursing /a, Manuel Ascencio Villarroel, Cochabamba first quarter 2011

El Síndrome de Desgaste Profesional es el agotamiento emocional, despersonalización y baja realización personal, presentándose en personas que trabajan con el público, especialmente en Enfermería por la interacción con usuarios. El sufrimiento de esta patología lleva consecuencias para el profesional, familia, institución y la misma sociedad. El objetivo del estudio es determinar las repercusiones del Síndrome en los ámbitos: personal, familiar, social, laboral y la relación con factores no motivacionales en Licenciadas de Enfermería del Hospital del Niño/a “Manuel Ascencio Villarroel”, por las características de su trabajo.La investigación tiene un enfoque Mixto porque se analizó y evaluó las repercusiones del Síndrome. El Síndrome de Desgaste Profesional se manifiesta en las Licenciadas de Enfermería con repercusiones: ámbito personal (manifestaciones físicas); ámbito familiar (problemas de pareja e hijos/as), en algunos casos con desintegración familiar; ámbito social (predisposición al aislamiento de la sociedad); ámbito profesional e institucional, existe sobrecarga laboral que afecta la calidad y calidez de atención al usuario y también los factores motivacionales deficientes de autoridades institucionales. Por las repercusiones encontradas del Síndrome de Desgaste Profesional, en las Licenciadas de Enfermería urge que las autoridades institucionales tomen medidas que el caso amerita para prevenir, afrontar y curar esta enfermedad

Ashley revisited: a response to the critics.

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them.

Policies on donation after cardiac death at children's hospitals: a mixed-methods analysis of variation.

CONTEXT: Although authoritative bodies have promulgated guidelines for donation after cardiac death (DCD) and the Joint Commission requires hospitals to address DCD, little is known about actual hospital policies. OBJECTIVE: To characterize DCD policies in children's hospitals and evaluate variation among policies. DESIGN, SETTING, AND PARTICIPANTS: Mixed-methods analysis of policies collected between November 2007 and January 2008 from hospitals in the United States, Puerto Rico, and Canada in 2 membership categories of the National Association of Children's Hospitals and Related Institutions. MAIN OUTCOME MEASURES: Status of DCD policy development and content of the policies based on coding categories developed in part from authoritative statements. RESULTS: One hundred five of 124 eligible hospitals responded, a response rate of 85%. Seventy-six institutions (72%; 95% confidence interval [CI], 64%-82%) had DCD policies, 20 (19%; 95% CI, 12%-28%) were developing policies; and 7 (7%; 95% CI, 3%-14%) neither had nor were developing policies. We received and analyzed 73 unique, approved policies. Sixty-one policies (84%; 95% CI, 73%-91%) specify criteria or tests for declaring death. Four policies require total waiting periods prior to organ recovery at variance with professional guidelines: 1 less than 2 minutes and 3 longer than 5 minutes. Sixty-four policies (88%; 95% CI, 78%-94%) preclude transplant personnel from declaring death and 37 (51%; 95% CI, 39%-63%) prohibit them from involvement in premortem management. While 65 policies (89%; 95% CI, 80%-95%) indicate the importance of palliative care, only 5 (7%; 95% CI, 2%-15%) recommend or require palliative care consultation. Of 68 policies that indicate where withdrawal of life-sustaining treatment can or should take place, 37 policies (54%; 95% CI, 42%-67%) require it to occur in the operating room and 3 policies (4%; 95% CI, 1%-12%) require it to occur in the intensive care unit. CONCLUSIONS: Most children's hospitals have developed or are developing DCD policies. There is, however, considerable variation among policies.

Characteristics of deaths occurring in hospitalised children: changing trends.

BACKGROUND: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. OBJECTIVES: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. METHODS: Routine administrative data from one large tertiary-level UK children's hospital was examined over a 7-year period (1997-2004) for children aged 0-18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases-10 codes) were studied. Statistical significance was tested by the Kruskal-Wallis analysis of ranks and median test (non-parametric variables), chi(2) test (proportions) and Cochran-Armitage test (linear trends). RESULTS: Of the 1127 deaths occurring in hospital over the 7-year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0-23.25 days) on a hospital ward before being admitted to an ICU where they died. CONCLUSIONS: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.

Evaluación del Proceso de Atención de los Usuarios que acuden a la Consulta Externa del Hospital Pediátrico Baca Ortíz de Quito en el año 2007 / Evaluation of the Process of Attention of the Users that you/they go to the External Consultation of the Pediatric Hospital Luggage Baca Ortíz of I Remove in the year 2007

El presente estudio se realizó en el Hospital de Niños Baca Ortíz de Quito, y tuvo como objetivo identificar las característica de la Atención en Consulta Externa del Hospital y analizar su oprganización para determinar como inciden dichas características sobre la calidad de atención y sobre la satisfacción de los pacientes.El estudio se realizó durante seis meses y fue descriptivo, analítico y transversal dirigido por una parte a la población de usuarios del Hospital (niños 0 a 13 años 11 meses, y sus familiares), y por otra, al personal que trabaja en la Consulta Externa. Los instrumentos utilizados incluyeron una Encuesta a usuarios externos, apicada a una muestra de 270 usuarios distribuidos en las seis especialidades de mayor demanda en Consulta Externa, una Lista de Chequeo para evaluar el desempeño y actitud del personal