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.

Moving Beyond Statements to Protect Transgender Youth.

This Viewpoint explores the politicized nature of gender-affirming care for transgender and nonbinary youth and how children's hospitals can provide education, resources, and access to families seeking care.

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.

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.

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.

Economics and ethics of paediatric respiratory extra corporeal life support.

Extra corporeal membrane oxygenation (ECMO) is a form of life support, which facilitates gas exchange outside the body via an oxygenator and a centrifugal pumping system. A paediatric cardiac ECMO programme was established in 2005 at Our Lady's Children's Hospital, Crumlin (OLCHC) and to date 75 patients have received ECMO, the majority being post operative cardiac patients. The outcome data compares favourably with international figures. ECMO has been most successful in the treatment of newborn infants with life threatening respiratory failure from conditions such as meconium aspiration, respiratory distress syndrome and respiratory infections. There is no formal paediatric respiratory ECMO programme at OLCHC, or anywhere else in Ireland. Currently, neonates requiring respiratory ECMO are transferred to centres in Sweden or the UK at an average cost of 133,000 Euros/infant, funded by the Health Service Executive E112 treatment abroad scheme. There is considerable morbidity associated with the transfer of critically ill infants, as well as significant psycho-social impact on families. OLCHC is not funded to provide respiratory ECMO, although the equipment and expertise required are similar to cardiac ECMO and are currently in place. The average cost of an ECMO run at OLCHC is 65,000 Euros. There is now a strong argument for a fully funded single national cardiac and respiratory paediatric ECMO centre, similar to that for adult patients.

Child- and family-centered care in the treatment of children - knowledge, attitudes, practice.

Despite the advances in medical technology, health care improvements have not always been accompanied by commensurate attention to the child's well-being. Psychological and emotional status of children during hospital treatment is often underestimated. Namely, certain kind of institutional negligence is frequently present in everyday practice in children's institutions. Many hospitals in Bosnia and Herzegovina (B&H) have become child-friendly during the implementation of the Project on Child-Friendly Hospitals supported by UNICEF and WHO. Apart from the introduction of child friendly environment, staff in hospitals was trained to provide a holistic approach. The program was closely linked to the Baby Friendly Hospital Initiative that supported breastfeeding. A few years thereafter, our focus is still on the physical treatment of sick children, whereas the attention to their anxieties, fears and suffering has failed. A more serious approach to this problem is needed and should begin at an educational level in medical school programs. Accordingly, our philosophy (mission) should change from a mechanical (techno-) medicine to holistic medicine.

Expressing ethical principles of treatment and care in a charter: what value?

More than ever before, public institutions are expected to have accessible guidelines on what they do, both for their staff and for those served by them. With this in mind, some principles of treatment and care of sick children were drafted for the Children's Hospital at Westmead. These were centred on ethics, primarily of what was best for the child. They were neither all-inclusive nor specific. They were labelled as a charter. They were rejected by a parent committee and met with unenthusiastic responses at meetings of hospital and ethics professionals. Reasons for this are unclear, but it is speculated that fear of the unknown and distrust of institutions may be factors. To date, the charter has not proved useful, except in provoking further discussion on how general guidelines are written, used and valued and on end-of-life decision-making more generally.

Role and function of a paediatric clinical ethics service: experiences at the Royal Children's Hospital, Melbourne.

This article explores and analyses the role and functions of a clinical ethics service in paediatrics. It is based on the experiences of developing ethics capacity at the Royal Children's Hospital, Melbourne, which has evolved since 2002 from a multidisciplinary advisory panel into Australia's first dedicated paediatric Children's Bioethics Centre, which opened in 2008. The ultimate goal is building ethics capacity and literacy across the hospital and continuing to support clinical staff managing patients and their families in ethically problematic cases. This is achieved through current case consultation, education and training, research and institutional policy, and guideline development. The experience of building a clinical ethics service has led to many changes to its structure over the years, with issues like timeliness of meeting, constitution of the group and referral and reporting structures arising as key elements of evolution. Challenges include resourcing and structure, institutional support, and family involvement in ethics consultations.

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.

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.

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.

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.

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.

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.

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.