Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, pediatric (...) cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

Volume 24, Issue 12, December 2024, Page 48-51.

An eighteen‐year‐old with sickle cell disease was admitted to the pediatric hematology service at his local children's hospital for management of an acute pain crisis, one of many such admissions. He had a good relationship with his primary hematologist and primary nurse, but with other health care providers, there was evident friction. Sometimes, he was simply rude, rolling over and pretending to sleep in response to questions about his symptoms. When frustrated or convinced that his pain was not (...) being addressed appropriately, he was prone to yelling and cursing at his nurses. After members of the health care team complained, their supervisor decided to transfer the patient to an adult general medicine service. Reasons cited for the transition included the stressful work environment created by the patient's actions, his refusal to follow directives from staff (although he was generally adherent to treatment), and the hypothetical harm to other young patients who might witness his behavior. Was this a just outcome? Is it ever permissible to deny access to pediatric care to a patient whose best interests would be served by it? Can access be withheld for “bad” behavior, and can transfer of care be wielded as a punishment? (shrink)

Objectives: To quantify the use of do-not-resuscitate orders in a tertiary-care children’s hospital and to characterise the circumstances in which such orders are written.Design: Retrospective study conducted in a 500-bed children’s hospital in Taiwan.Patients: The course of 101 patients who died between January 2002 and December 2005 was reviewed. The following data were collected: age at death, gender, disease and its status, place of death and survival. There were 59 males and 42 females with a median (...) age of 103 months . 50 children had leukaemias, and 51 had malignancies other than leukaemia. The t test and the χ2 test were applied as appropriate.Results: The study found that 44% of patient deaths occurred in the paediatric oncology ward; 29% of patient deaths occurred in the intensive care unit; and 28% of patients died in their home or at another hospital. Other findings included the following: 46 of 101 patients died after attempted cardiopulmonary resuscitation and 55 died with a DNR order in effect. The mean age at death was 9.8 years in both groups with or without DNR orders.Conclusions: From the study of patient deaths in this tertiary-care children’s hospital, it was concluded that an explicit DNR order is now the rule rather than the exception, with more DNR orders being written for patients who have been ill longer, who have solid tumours, who are not in remission and who are in the ward. (shrink)

IntroductionThis study reports the findings on how Child life specialists implemented an innovative approach to providing therapeutic support to pediatric patients.MethodsPart of a larger study that uncovered themes about CLSs’ experiences while working with MEDi®, this study reports the reflections that CLSs have about the process of implementation. Seven CLSs participated in semi-structured interviews. Content analysis was conducted on interview data and three themes were generated.ResultsThe first was in regards to the adoption process whereby CLS challenges, successes, and surprises were (...) revealed. Second, CLSs explained how using MEDi® aligned with the roles and responsibilities of their profession. The third area of understanding was in CLS explanation of the friendly emotional impact MEDi® seems to have on the hospital environment.ConclusionChild life specialists are encouraged to use the MEDi® robot to support children at the bedside. (shrink)

Background: Scholarly work is needed to develop the conceptual and theoretical understanding of trust to nursing practice. The transition from hospital care to complex pediatric homecare involves nurses in myriad roles, including management and care provision. Complex pediatric homecare transforms children, families, professionals, and communities, but its exact implications are unclear. Research objectives: To conduct an ethical inquiry into the role and responsibilities of nurses in the qualitative experience of adults involved in the hospital-to-home transition of young, (...) ventilator-dependent children. Research design: We followed methods described by Franco Carnevale. We used a sociologically grounded theoretical orientation—trust—to re-interpret qualitative data for an ethical inquiry into a specific facet of that data. Participants and study context: The participants included 26 adults, including 14 nurses, involved in the hospital-to-home transition in a Canadian province. Participants represented family, hospital, home, and government. Ethical considerations: The Conjoint Health Research Ethics Board at the University of Calgary approved this study. Findings: First, the concept and practice of trust was salient to the experience of transition. For example, responsibilities’ allocation between hospital-based professionals to mothers, home-based nurses, and non-professionals necessitated reliance and vulnerability. Second, the consequences of distrust connected to recognized challenges. For example, tensions along rural–urban, medical-family, and professional–personal divide each revealed suspicion and uncertainty that led to isolation and anxiety for all involved. Third, recommendations to improve the experience and mitigate the challenges of transition can be grounded in trust promotion. For example, transition-specific education programs and codes of ethics would promote openness, recognize mutual vulnerability, and advance trust in transition. Conclusions: The challenges to transition evidenced distrust, while trust represents a powerful tool to counter these challenges and their implications. A climate of trust could bridge divides between mothers and professionals; rural and urban professionals; and professionals with differing relationships with the family. (shrink)

The aim of this study was to evaluate terminal care among hospitalized children who died of HIV/AIDS. The design was a retrospective.

In most children’s hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and (...) physicians about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children’s hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are ethics committee meetings, Nursing Ethics Forum, ethics Brown Bag workshops, PICU ethics rounds, Grand Rounds, NICU Comprehensive Care Rounds, Palliative Care Team case conferences, multidisciplinary consults in Fetal Health Center, and ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of “core competencies” than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple “moral spaces” in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today. (shrink)

The United States Court of Appeals for the First Circuit recently upheld a United States District Court for the District of Maine Judge's decision to dismiss a Maine plaintiff's medical malpractice claim against a Massachusetts hospital defendant for want of personal jurisdiction over the hospital. The Court of Appeals found it unreasonable to hale hospitals into an out-of-state court merely because they accept out-of-state patients.Plaintiff Danielle Harlow is a Maine resident who suffered a stroke at the age of (...) six while undergoing a medical procedure at Children's Hospital of Boston, Massachusetts. The stroke, allegedly caused by the Hospital's negligence, led to brain damage resulting in partial paralysis and cognitive and behavioral impairments. The procedure was supposed to treat Harlow's rapid heartbeat, a condition related to her Wolff-Parkinson-White Syndrome. Harlow's pediatrician in Maine recommended that she visit Children's Hospital in Boston to treat her arrhythmia. (shrink)

Objectives—To investigate the factors considered by staff, and the practicalities involved in the decision making process regarding the withdrawal or withholding of potential life-sustaining treatment in a children's hospital. To compare our current practice with that recommended by the Royal College of Paediatrics and Child Health guidelines, published in 1997.Design—A prospective, observational study using self-reported questionnaires.Setting—Tertiary paediatric hospital.Patients and participants—Consecutive patients identified during a six-month period, about whom a formal discussion took place between medical staff, nursing staff (...) and family regarding the withholding or withdrawal of potentially life-sustaining treatments. The primary physician and primary nurse involved in the discussion were identified.Method—Two questionnaires completed independently by the primary physician and nurse.Results—Twenty-two patients were identified . In 20 cases treatment was withdrawn or withheld, in two cases treatment was continued. Nursing staff considered family wishes and family perceptions of patient suffering as significantly more important factors in decision making than medical staff, who considered prognostic factors as most important. In only two cases were the patient's expressed wishes apparently available. In most cases staff considered the patient's best interests were served and the process would not be enhanced by the involvement of an independent ethics committee. The exceptions were those cases in which treatment was continued following disagreement between parties.Conclusions—Our current practice is consistent with that recommended by the RCPCH. The contribution of the patient, provision of staff counselling and general practitioner involvement were identified as areas for improvement. (shrink)

A balance needs to be struck between facilitating compassionate access to innovative treatments for those in desperate need, and the duty to protect such vulnerable individuals from the harms of untested/unlicensed treatments. We introduced a principle-based framework to evaluate such requests and describe its application in the context of recently evolved UK, US and European regulatory processes. 24 referrals were received by our quaternary children's hospital Clinical Ethics Committee over the 5-year period. The CEC-rapid response group evaluated individual (...) cases within 48-hours; the main referrers being haematology/oncology, immunology or transplant services. Most requests were for drug/vaccine/pre-trial access or biological/cellular therapies. The majority of individual requests were approved ; neutral or negative opinions were given in 5, including 3 group requests. Recently evolved regulatory processes share common criteria and conditions to our framework including: demonstration of clinical need; sound scientific basis with lack of viable alternative; risks-benefit/best interests evaluation; arrangements for fully informed consent; no compromise of arrangements to test treatment for licensing purposes; consideration of resource implications. There are differences between individual processes and with our framework, with respect to procedures, scope, application format, costs and obligation to make available all outcome data. Our experience has emphasized the need for an independent, principled, consistent, fair and transparent response to the increasing demand for innovative treatment on a compassionate basis. We believe that there is a need for harmonization of the recent proliferation of regulation and legislation in this area. (shrink)

BackgroundPublished data and practice recommendations on end-of-life care generally reflect Western practice frameworks; there are limited data on withdrawal of treatment for children in China.MethodsWithdrawal of treatment for children in the pediatric intensive care unit of a regional children’s hospital in eastern China from 2006 to 2017 was studied retrospectively. Withdrawal of treatment was categorized as medical withdrawal or premature withdrawal. The guardian’s self-reported reasons for abandoning the child’s treatment were recorded from 2011.ResultsThe incidence of withdrawal (...) of treatment for children in the PICU decreased significantly; for premature withdrawal the 3-year average of 15.1% in 2006–2008 decreased to 1.9% in 2015–2017. The overall incidence of withdrawal of care reduced over the time period, and withdrawal of therapy by guardians was the main contributor to the overall reduction. The median age of children for whom treatment was withdrawn increased from 14.5 months in 2006 to 40.5 months in 2017. Among the reasons given by guardians of children whose treatment was withdrawn in 2011–2017, “illness is too severe” ranked first, accounting for 66.3%, followed by “condition has been improved”. Only a few guardians ascribed treatment withdrawal to economic reasons.ConclusionsThe frequency of withdrawal of medical therapy has changed over time in this children’s hospital PICU, and parental decision-making has been a large part of the change. (shrink)

This article aims to deconstruct the concept of dignity in a way that is meaningful, in particular to nurses and other health workers who seek to promote the dignity of children in their care. Despite the emphasis in a variety of codes and policies to promote dignity, there is a lack of a clear definition of dignity in the literature. In particular there is little reference to dignity, theoretically or empirically, as it relates to children. Without clarity it (...) is not possible to act in an ethical way on behalf of children whose dignity could otherwise be compromised. The theoretical position taken has evolved from the medico-nursing and philosophical discourse concerning the nature of human dignity and more recent sociological texts that discuss the social construction of the child and childhood. The article is further influenced by additional insights derived from an ethnographic pilot study at a large district general hospital. This study was undertaken in an attempt to appreciate the subjective experience of dignity by children, and to begin to address the empirical gap in the literature and promote discussion. The concept of a macro and a micro dignity is discussed, together with the role of the nurse in articulating the relationship between the two. The importance of control and witnesses in the experience of dignity is discussed and, finally, also the ethical implications when seeking to promote the dignity of children. (shrink)

Research relating to patients’ views of the good nurse has mainly focused on the perspectives of adult patients, with little exploring the perceptions of children. This article presents findings from a qualitative study that explored views of the good nurse from the perspective of hospitalized children. The aims of the study were threefold: to remedy a gap in the literature; to identify characteristics of the good nurse from the perspective of children in hospital; and to inform (...) children’s nursing practice. Twenty-two children were interviewed using an adapted ‘draw and write’ technique. Five themes relating to children’s views of the good nurse emerged from the analysis: communication; professional competence; safety; professional appearance; and virtues. Each of these will be discussed in relation to good nurse literature and recommendations made for children’s nursing practice. (shrink)

As a well-established service offered at many hospitals internationally, clinical ethics consultation (CEC) is increasingly recognized as a tool to improve patient care quality (Fox et al. 2022; Ta...

Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. Here we highlight (...) some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician. (shrink)

We outline a process, undertaken at a large tertiary children's hospital, intended to provide practical guidance and support for those involved in the management of children with life-limiting conditions. Initial discussions with representatives of clinical and support services identified communication problems and ethical dilemmas as key issues. These were further explored in multidisciplinary hospital meetings, culminating in a conference (Living Well, Dying Well) where individual perspectives - clinical, multi-faith, parental and legal - and cases were presented. (...) Communication problems were found to involve unrealistic expectations, failures of anticipation and difficulties in discussing sensitive issues, while ethical dilemmas arose from balancing burdens and benefits, clinical uncertainty, respecting autonomy and achieving equity and justice in delivery of care. An integrated service has been developed that is intended to provide clinical and spiritual care, psychosocial and ethical support, advice and mediation for children, families and staff, and to address the latter's educational and training needs. (shrink)

Working in healthcare can be fulfilling, meaningful, and sometimes exhausting. Creative endeavors may be one way to foster personal resilience in healthcare providers. In this article, we describe an annual arts and humanities program, the Ludwig Rounds, developed at a large academic children’s hospital. The event encourages staff to reflect on resilience by sharing their creative work and how it had an impact on their clinical careers. The multidisciplinary forum also allows staff to connect and learn about each (...) other. We discuss the development of the program, its format and logistics, and lessons learned over the past 15 years. (shrink)

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making (...) to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care. (shrink)

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include (...) over treatment, infection, disruption of family life, and the intensive utilization of resources—combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay.In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to making clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital. (shrink)

Background: There is growing interest in credentialing hospital ethicists. Consult volume is being incorporated into credentialing criteria, although few data supporting this approach are available...

Children themselves place a high value on their own spiritual care when in hospital. However, the spiritual care of children in hospital is often overlooked. Hospitalisation and medical procedures can be traumatic and overwhelming for children, they often see hospitalisation as punishment for something they did wrong and they can even experience spiritual distress during illness and suffering. The spiritual care of hospitalised children should thus be a priority to help these children making (...) sense of pain and suffering, and assisting them to connect with a loving and forgiving God. Spirituality namely influences a diverse range of human concerns such as beliefs about illness and health, fears, relationships with family and friends and the experience of pain and suffering. Unfortunately, children often harbour misconceptions precisely in these areas. This article will draw directly on the given that children are concrete thinkers, yet able to have an understanding of holiness and God as the Holy One, if they receive the right guidance. The study will explore children’s spirituality and the way in which they experience holiness in the healthcare environment from a nursing science perspective. (shrink)

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the (...) practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives. (shrink)

IntroductionAnimal Assisted Interventions are increasingly common in pediatric care settings as a means to promote the physical, mental, and emotional well-being of hospitalized children and adolescents.ObjectivesThe aim of this work was to review published studies implementing AAIs in hospital settings and to assess the effects of AAIs on the biobehavioral response to stress and pain, social behavior, quality of life and level of satisfaction with hospitalization in children and adolescents. Stress and burden, quality of life, mood and (...) level of satisfaction with hospitalization in parents/caregivers as well as stress and burden, perception of the work environment and job satisfaction in hospital staff were also reviewed.MethodsAll published studies reporting quantitative assessments were systematically searched using PubMed, Scopus, ProQuest and Web of Science databases in accordance with PRISMA guidelines. The aim was to identify studies examining the effects of AAIs on behavioral, psychological and physiological responses to stress in children and adolescents formally admitted to a hospital for a stay, as well as in those undergoing a visit for treatments or medical examinations.ResultsOf the 350 studies screened, 21 were eligible for inclusion. Most of them focused on stress, pain, and anxiety reduction in pediatric patients, and used both physiological parameters and behavioral and psychological observations/scales. All studies employed dogs. Results show the potential of AAIs to reduce anxiety and behavioral distress in pediatric patients while acting on physiological measures associated with arousal.ConclusionAlthough further, more rigorous studies are still needed, the findings of this review may have implications for clinical practices suggesting appropriate planning of AAIs by pediatric healthcare professionals.Systematic Review Registration[https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=178993], identifier [CRD42020178993]. (shrink)

Durante su desarrollo el niño se enfrenta a eventos que plantean demandas difíciles de satisfacer como la enfermedad y la hospitalización. La Organización Mundial de Salud define la salud como un estado de completo bienestar físico, mental y social, pero no existe consenso en la literatura sobre el término bienestar. El objetivo del artículo es realizar una revisión bibliográfica acerca del concepto bienestar en niños, asociado al proceso salud - enfermedad y a la hospitalización. Los niños experimentan bienestar cuando predominan (...) sus emociones positivas, estas favorecen la salud, las negativas, pueden provocar estados patológicos y son frecuentes en la hospitalización. Esa realidad amerita ser transformada. El bienestar en niños hospitalizados constituye un reto para las ciencias médicas para penetrar las bases del nivel secundario de atención. Throughout their development, children face events that pose hard-to-satisfy demands for them such as illness and hospitalization. The World Health Organization defines health as a state of complete physical, mental, or social well-being; however, there is no consensus in literature about the term "well-being". The objective of the article is to do a bibliographic review on the concept of children well-being associated to the health-illness process and to hospitalization. Children experience the state of well-being when positive emotions, which favor health, prevail. Negative feelings, on the other hand, can cause pathological states and they are common in hospitalization. That reality merits transformation. Hospitalized children's well-being presents a challenge for medical sciences in order to get inside the basis of secondary health care attention. (shrink)

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of ethical (...) and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families. (shrink)

Objectives: The objective of this study is to investigate the relationship between a physician’s subjective mortality prediction and the level of confidence with which that mortality prediction is made.Design and participants: The study is a prospective cohort of patients less than 18 years of age admitted to a tertiary Paediatric Intensive Care Unit at a University Children’s Hospital with a minimum length of ICU stay of 10 h. Paediatric ICU attending physicians and fellows provided mortality risk predictions and (...) the level of confidence associated with these predictions on consecutive patients at the time of multidisciplinary rounds within 24 hours of admission to the paediatric ICU. Median confidence levels were compared across different ranges of mortality risk predictions.Results: Data were collected on 642 of 713 eligible patients . Mortality predictions greater than 5% and less than 95% were made with significantly less confidence than those predictions 95%. Experience was associated with greater confidence in prognostication.Conclusions: We conclude that a physician’s subjective mortality prediction may be dependent on the level of confidence in the prognosis; that is, a physician less confident in his or her prognosis is more likely to state an intermediate survival prediction. Measuring the level of confidence associated with mortality risk predictions may therefore be important because different levels of confidence may translate into differences in a physician’s therapeutic plans and their assessment of the patient’s future. (shrink)

In this brief text we look at one instance of how gender norms continue to inform institutional treatment of parents regarding care for children: specifically, at how the exercise of fathers’ responsibilities for their children can be discouraged or altogether blocked.

An acute hospital environment is a confusing place for many patients requiring admission, especially when they are presenting as acutely unwell. This can be particularly difficult for people living with dementia. As cognition changes it is not uncommon for people living with dementia to have difficulties with their ability to orientate to time, place and person. These disorientating moments can lead to personal distress, and at times behavioural changes. As well as being distressing for the person living with dementia, (...) it can also be emotionally and ethically challenging for acute hospital staff, including nurses. One area found to be particularly challenging is the concept of whether actively engaging with a person living with dementia's living truth is deceitful. This raises further questions of what forms of nurse responses to temporal disorientation might be constituted as lying, colluding, or alternatively validating. This article uses autoethnography as a research methodology with which to explore a mental health nurse's lived experience of the challenges of responding truthfully to disorientation and distress in an acute hospital. This article is not attempting to offer conclusive answers to these challenging ethical questions. It is instead re‐opening and re‐visiting the discourse of what is truth in dementia from a personal and professional nurse perspective through a lived narrative. The conclusion to the concept of truth in dementia is complex, nuanced and individualized. However, it is essential that a nurse's response to disorientation and distress is always person and living present focused, and not lie focused. (shrink)

BackgroundObtaining consent has become a standard way of respecting the patient’s rights and autonomy in clinical research. Ethical guidelines recommend that the child’s parent/s or authorised legal guardian provides informed consent for their child’s participation. However, obtaining informed consent in paediatric research is challenging. Parents become vulnerable because of stress related to their child’s illness. Understanding the views held by guardians and researchers about the consent process in Malawi, where there are limitations in health care access and research literacy will (...) assist in developing appropriate consent guidelines.MethodsWe conducted 20 in-depth interviews with guardians of children and research staff who had participated in paediatric clinical trial and observational studies in acute and non-acute settings in the Southern Region of Malawi. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Interviews were compared across studies and settings to identify differences and similarities in participants’ views about informed consent processes. Data analysis was facilitated by NVIVO 11 software.ResultsAll participants across study types and settings reported that they associated participating in research with therapeutic benefits. Substantial differences were noted in the decision-making process across study settings. Guardians from acute studies felt that the role of their spouses was neglected during consenting, while staff reported that they had problems obtaining consent from guardians when their partners were not present. Across all study types and settings, research staff reported that they emphasised the benefits more than the risks of the study to participants, due to pressure to recruit. Participants from non-acute settings were more likely to recall information shared during the consent process than participants in the acute setting.ConclusionThe health care context, culture and research process influenced participants’ understanding of study information across study types and settings. We advise research managers or principal investigators to define minimum requirements that would not compromise the consent process and conduct study specific training for staff. The use of one size fits all consent process may not be ideal. More guidance is needed on how these differences can be incorporated during the consent process to improve understanding and delivery of consent.Trial registration Not applicable. (shrink)

A key question in the field of educational theory is the question of what is ‘educational’ in education. Responses to this question in the field are often connected to some type of change that is to take place in the child: children are socialised, they become subjects, or learn. I argue that this way of understanding what is educational in education is not applicable to a specific type of educational practice, which I label as co-existential practices. Co-existential practices are (...) often taken up by educators, but to understand what is educational in them, we need an understanding that does not rely on references to changing children. I build an alternative view of education with the help of Derrida’s concept of hospitality. I show how this interpretation of what is educational in education may help the field of educational theory to develop a fuller understanding of the relation between ethics and education. (shrink)

Human dignity is grounded in basic human attributes such as life and self-respect. When people cannot stand up for themselves they may lose their dignity towards themselves and others. The aim of this study was to elucidate if dignity remains intact for family members during care procedures in a children’s hospital. A qualitative approach was adopted, using open non-participation observation. The findings indicate that dignity remains intact in family-centred care where all concerned parties encourage each other in a (...) collaborative relationship. Dignity is shattered when practitioners care from their own perspective without seeing the individual in front of them. When there is a break in care, family members can restore their dignity because the interruption helps them to master their emotions. Family members’ dignity is shattered and remains damaged when they are emotionally overwhelmed; they surrender themselves to practitioners’ care, losing their self-esteem and self-respect. (shrink)

Despite its invasive nature, specific consent for general anaesthesia is rarely sought—rather consent processes for associated procedures include explanation of risk/benefits. In adult intensive care, because no one can consent to treatments provided to incapacitated adults, standardised consent processes have not developed. In paediatric intensive care, despite the ready availability of those who can provide consent, no tradition of seeking it exists, arguably due to the specialty’s evolution from anaesthesia and adult intensive care. With the current Montgomery-related focus on consent, (...) this seems untenable. We undertook a qualitative study in a specialist children’s hospital colocated paediatric/neonatal intensive care (same medical team) in which parental acceptance of admission and entailed procedures is considered implied by virtue of that admission. Semistructured interviews were carried out with both staff and parents to investigate their views about consent, the current system and a proposedblanket consent system, in which parents actively consent at admission to routine procedures. Divergent views emerged: staff were worried that requiring consent at admission might prove a further emotional burden, whereas parents found providing consent a way of coping, feeling empowered and maintaining control. Inconsistencies were found in the way consent is obtained for your routine procedures. Practice does seem inconsistent with contemporary consent standards for medical intervention. Our findings support the introduction of a blanket consent system at admission together with ongoing bedside dialogue to ensure continuing consent. Both parents and staff expressed concern about avoiding possible harmful delays to children due to parental emotional overload and language difficulties. (shrink)

This article describes a study carried out among 14-18-year-old nursing students in Hungary. The students were asked to consider an ethical problem. The parents of a sick child ask that she should not be told of a forthcoming operation. Are the nurses to agree to this demand or not? The author concluded from this study that nurses need more training in ethical decision-making, that they need to know about the rights of children in hospital, and that nursing training (...) should start when students are older. (shrink)

This article examines CURE Children’s Hospital of Uganda (CURE), a faith-based pediatric neurosurgery hospital in Sub-Saharan Africa, as a unique nexus of Western biomedical and holistic-spiritual healthcare in their philosophy, staff motivation, and delivery. Offering the concept of a healing narrative, the essential core of their practice is captured, I suggest, in the articulation and practice of a healing narrative of human flourishing, and we might productively think of the ethics of their clinical approach as premised on (...) being with the patient, understood as mutual vulnerability and attending to suffering, and being for the patient, understood as advocating joy within and beyond the clinic. Extrapolating from this case study, the ideas being with and being for might be added to our clinical ethical practices and lexicon as we think through alternatives to a fragmented, compartmentalized biomedical care. (shrink)

INTRODUCTION[|]The practice of medicine has evolved from old approach, in which all decisions for the patient are taken by physician, to a new approach, which includes patients to the medical decision-making process and endorses informed consent of the patients. In addition to healthcare professionals and patients, parents or legal representatives are stakeholders in the informed consent process of children. The knowledge and attitudes of physicians and medical school students about the informed consent period in children are important for (...) the effectiveness of the medical intervention and the biopsychosocial development of children. In this study, it was aimed to understand involvement of medical students and physicians in the informed consent process of children and their level of knowledge on children's rights and their attitudes in daily clinical practice.[¤]METHODS[|]The study is a descriptive study and n = 150 participants, who were randomly selected from senior medical school students working in medical school campus or university hospital and physicians serving pediatric patients, were included to this study. Questionnaires were applied for the measurement of participants' socio-demographic characteristics, education on pediatric patient rights, and legal provisions. The data were evaluated using SPSS 20.00 software.[¤]RESULTS[|]Of participants, 62% (n = 93) were phase 6 medical students, while 29.33% (n = 44) were resident physicians and the rest were faculty members (8.67%; n = 13). The proportion of physicians, who didn't received training on child rights, was 80.7% (n = 46) and statistically significantly higher than medical students (49.45%; n = 45) (p <0.001). However, participants who were not educated about the children's rights stated with higher ratio (44.83%; n=65), that informed consent should be obtained before medical intervention from individuals under 18 years of age, when they are compared to the the participants who received education (20.69%; n=30) (p = 0,019). The majority of participants (59.5%; n = 88) find the intervention in individuals under the age of 18 years in emergencies without consent of legal representatives ethically and legally appropriate (p <0.001). The participants believe that it is ethically and legally appropriate to conduct an intervention on an individual under the age of 18 years without the legal representative (36. 7%; n=54) (p <0.001).[¤]DISCUSSION AND CONCLUSION[|]This study compared the levels of knowledge and attitudes of participants, who were previously trained in or didn't received any training about children's rights and informed consent of children. However, the quality of the training of the participants on children's rights, was not questioned. This study showed that education on children's rights does not significantly increase the level of legal knowledge on children's rights. Having well-designed a subject focused on this theme in medical deontology and ethics education can increase the knowledge levels and improve the attitudes of medical students. This study sheds light on the issues that need to be focused in the medical faculties and the trainings of physicians and showed lack of information and need for development of attitudes regarding children's rights and informed consent in children.[¤]. (shrink)

Background The American Society for Bioethics and Humanities (ASBH), a professional organization that certifies ethics consultants who pass the qualifying examination, published standards for the conduct of ethics consultations (EC). A national survey of adult hospital ethics consultants identified adherence to these standards, but no assessment of pediatric hospitals’ adherence has been done.Methods In this cross-sectional study, a national questionnaire was distributed electronically in 2022 to pediatric ethics consultants at children’s hospitals, collecting information about adherence to the ASBH (...) standards. Hospital characteristics were extracted from the Children’s Hospital Association Annual Benchmark Report. Quantitative analysis included descriptive statistics to assess adherence and analyses of variance to investigate associations between hospital characteristics and the time taken to respond to consultations.Results Of the 181 eligible pediatric hospitals, we received 104 completed surveys (57%) from 45 states. Pediatric EC have similar adherence rates to ASBH standards as adult hospitals. High-adherence (>75%) areas included having an expert available for EC and permitting any staff member to request EC. Low-adherence areas included having comprehensive policies covering all aspects of EC activities, having a response plan for egregious violations, and the elicitation of formal feedback after EC. There is an increased average response time for ethics consultation services in smaller pediatric hospitals and church-operated hospitals.Conclusions Pediatric hospitals overall have moderate adherence to the ASBH EC standards, with the highest rates occurring for standards that are shared by the American Academy of Pediatrics. Additional research into the barriers to standard adherence and the effectiveness of standards is warranted with emphasis on the impact of adherence on consultation quality. (shrink)

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 examine the characteristics and location of death among hospitalised children, investigate yearwise trends in these characteristics and test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health 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 for children aged 0–18 years. Demographic details, location of deaths, source of admission , length of stay and final diagnoses were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test , χ2 test and Cochran–Armitage test .Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority were among infants. The main diagnoses at death included congenital malformations , perinatal diseases , cardiovascular disorders and neoplasms . Most deaths occurred in an intensive care unit environment , with a significant increase over the years . There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort . Infants with congenital malformations and perinatal conditions were more likely to die in an ICU , and older children with malignancy outside the ICU . Children stayed for a median of 13 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. (shrink)

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. (shrink)