To design effective strategies to improve ethics consultation (EC) practices, it is important to understand the views of ethics practitioners. Previous U.S. studies of ethics practitioners have overrepresented the views of academic bioethicists. To help inform EC improvement efforts, we surveyed a random stratified sample of U.S. hospitals, examining ethics practitioners’ opinions on EC in general, on their own EC service, on strategies to improve EC, and on ASBH practice standards. Respondents across all categories of hospitals had very positive perceptions (...) of their own ethics consultation service (ECS) and few concerns about quality. Our findings suggest that the ethics-related needs of small, rural, non-teaching hospitals may be very different from those of academic medical centers, and therefore, different approaches to addressing ethical issues might be warranted. (shrink)

The annual volume of ethics consultations (ECs) has been a topic of interest in the bioethics literature, in part because of its presumed relationship to quality. To better understand factors associated with EC volume, we used multiple linear regression to model the number of case consultations performed in the last year based on a national survey. We found that hospital bed size, academic affiliation, and urban/rural location were all associated with EC volume, but were not the primary drivers. Instead, these (...) variables affected EC volume through three other variables, all of which relate to ethics staffing: the percentage of case consultations performed by a single individual; whether the survey respondent’s main role at the hospital contained the word “ethics”; and especially, the number of full-time ethics program staff. We conclude that EC is an example of supply-sensitive care, and further research is needed to determine the optimal level of EC activity. (shrink)

The primary objective was to review pediatric ethics consultations at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, with (...) the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach. (shrink)

As the field of clinical ethics consultation sets standards and moves forward with the Quality Attestation process, questions should be raised about what ethical issues really do arise in practice. There is limited data on the type and number of ethics consultations conducted across different settings. At Loyola University Medical Center, we conducted a retrospective review of our ethics consultations from 2008 through 2013. One hundred fifty-six cases met the eligibility criteria. We analyzed demographic data on these patients and conducted (...) a content analysis of the ethics consultation write-ups coding both the frequency of ethical issues and most significant, or key, ethical issue per case. Patients for whom ethics consultation was requested were typically male, white, between 50 and 69 years old, of non-Hispanic origin, and of Roman Catholic faith. Nearly half were in the intensive care unit and 44.2 % died in the hospital. The most frequent broad ethical categories were decision-making, goals of care/treatment, and end-of-life. More specifically, capacity, patient’s wishes/autonomy, and surrogate decision maker were the most frequent particular ethical issues. The most common key ethical issues were withdrawing/withholding treatment, patient wishes/autonomy, and capacity. Our findings provide additional data to inform the training of clinical ethics consultants regarding the ethical issues that arise in practice. A wider research agenda should be formed to collect and compare data across institutions to improve education and training in our field. (shrink)

Background: In previous research on ethics case reflection (ECR) sessions about specific cases, healthcare professionals in childhood cancer care were clarifying their perspectives on the ethical issue to resolve their main concern of consolidating care. When perspectives were clarified, consequences in the team included ‘increased understanding’, ‘group strengthening’ and ‘decision grounding’. Additional analysis of the data was needed on conditions that could contribute to the quality of ECR sessions. Objective: The aim of this study was to explore conditions for clarifying (...) perspectives during ECR sessions. Research design: Data were collected from observations and interviews and the results emerged from an inductive analysis using grounded theory. Participants and research context: Six observations during ECR sessions and 10 interviews were performed with healthcare professionals working in childhood cancer care and advanced paediatric homecare. Ethical considerations: The study was approved by a regional ethical review board. Participants were informed about their voluntary involvement and that they could withdraw their participation without explaining why. Findings: Two categories emerged: organizational enablers and barriers and team-related enablers and barriers. Organizational enablers and barriers included the following sub-categories: the timing of the ECR session, the structure during the ECR session and the climate during the ECR session. Sub-categories to team-related enablers and barriers were identified as space for inter-professional perspectives, varying levels of ethical skills and space for the patient’s and the family’s perspectives. Discussion: Space for inter-professional perspectives included the dominance of a particular perspective that can result from hierarchical positions. The medical perspective is relevant for understanding the child’s situation but should not dominate the ethical reflection. Conclusion: Conditions for ECR sessions have been explored and the new knowledge can be used when training facilitators as well as for those who organize/implement ECR sessions. Awareness of space for different perspectives, including the possible medical advantage over the nursing perspective, could reduce the somewhat unilateral attention and contribute to an inter-professionally shared reflection. (shrink)

BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe (...) the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.MethodsThis study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation.ResultsData was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows:Interprofessional well-being in team interactionson a team level;Professional comfort when dealing with moral challengeson a personal level; andImproved quality of care for the child and the familyon a care level.ConclusionsHealthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support. (shrink)

Background: Previous research shows that pediatricians inconsistently utilize the ethics consultation service (ECS). Methods: Pediatricians in two suburban, Midwestern academic hospitals were asked to reflect on their ethics training and utilization of ECS via an anonymous, electronic survey distributed in 2017 and 2018, and analyzed in 2018. Participants reported their clinical experience, exposure to formal and informal ethics training, use of formal and informal ethics consultations, and potential barriers to formal consultation. Results: Less experienced pediatricians were more likely to utilize (...) formal ethics consultation and more likely to have formal ethics training. The most commonly reported reasons not to pursue formal ECS consultation were inconvenience and self-reported expertise in pediatric ethics. Conclusions: These results inform ongoing discussions about ethics consultation among pediatricians and the role of formal ethics training in both undergraduate and graduate medical education. (shrink)

Background: There are numerous benefits to ethics consultation services, but little is known about the reasons different professionals may or may not request an ethics consultation. Inter-professional differences in the perceived utility of ethics consultation have not previously been studied.Methods: To understand profession-specific perceived benefits of ethics consultation, we surveyed all employees at an urban tertiary children’s hospital about their use of ethics committee services (n = 842).Results: Our findings suggest that nurses and physicians find ethics consultations useful for different (...) reasons; physicians were more likely to report normative benefits, while nurses were more likely to report communicative and relational benefits.Conclusions: These findings support an open model of ethics consultation and may also help ethics committees to better understand consultation requests and remain attuned to the needs of various professional groups. (shrink)

Objective We sought to understand ethics and education needs of emergency nurses and physicians in paediatric and adult emergency departments in order to build ethics capacity and provide a foundation for the development of an ethics education programme. Methods This was a prospective cross-sectional survey of all staff nurses and physicians in three tertiary care EDs. The survey tool, called Clinical Ethics Needs Assessment Survey, was pilot tested on a similar target audience for question content and clarity. Results Of the (...) 123 participants surveyed, 72% and 84% of nurses and physicians fully/somewhat agreed with an overall positive ethical climate, respectively. 69% of participants reported encountering daily or weekly ethical challenges. Participants expressed the greatest need for additional support to address moral distress, conflict management with patients or families and resource issues. Of the 23 reported occurrences of moral distress, 61% were associated with paediatric mental health cases. When asked how the ethics consultation service could be used in the ED, providing education to teams was the most desired method. Conclusions Nurses report a greater need for ethics education and resources compared with their physician colleagues. Ethical challenges in paediatric EDs are more prevalent than adult EDs and nurses voice specific moral distress that are different than adult EDs. These results highlight the need for a suitable educational strategy, which can be developed in collaboration with the leadership of each ED and team of hospital ethicists. (shrink)

Clinical ethics has been developing in paediatric healthcare for several decades. However, information about how paediatricians use clinical ethics case consultation services is extremely limited. In this project, we analysed a large set of case records from the clinical ethics service of one paediatric hospital in Australia. We applied a paediatric-specific typology to the case referrals, based on the triadic doctor–patient–parent relationship. We reviewed the 184 cases referred to the service in the period 2005–2014, noting features including the type of (...) case, the referring department(s) and the patient9s age at referral. The two most common types of referral involved clinician uncertainty about the appropriate care pathway for the child (26% of total referrals) and situations where the child9s parents disagreed with the doctors’ recommendations for the child9s care (22% of total referrals). Referrals came from 28 different departments. Cancer, cardiology/cardiac surgery and general medicine referred the highest numbers of cases. The most common patient age groups were children under 1, and 14–15 years old. For three controversial areas of paediatric healthcare, clinicians had initiated processes of routine review of cases by the clinical ethics service. These insights into the way in which one very active paediatric clinical ethics service is used further our understanding of the work of paediatric clinical ethics, particularly the kinds of ethically challenging cases that paediatricians view as appropriate to refer for clinical ethics support. (shrink)

Objective We sought to understand ethics and education needs of emergency nurses and physicians in paediatric and adult emergency departments in order to build ethics capacity and provide a foundation for the development of an ethics education programme. Methods This was a prospective cross-sectional survey of all staff nurses and physicians in three tertiary care EDs. The survey tool, called Clinical Ethics Needs Assessment Survey, was pilot tested on a similar target audience for question content and clarity. Results Of the (...) 123 participants surveyed, 72% and 84% of nurses and physicians fully/somewhat agreed with an overall positive ethical climate, respectively. 69% of participants reported encountering daily or weekly ethical challenges. Participants expressed the greatest need for additional support to address moral distress, conflict management with patients or families and resource issues. Of the 23 reported occurrences of moral distress, 61% were associated with paediatric mental health cases. When asked how the ethics consultation service could be used in the ED, providing education to teams was the most desired method. Conclusions Nurses report a greater need for ethics education and resources compared with their physician colleagues. Ethical challenges in paediatric EDs are more prevalent than adult EDs and nurses voice specific moral distress that are different than adult EDs. These results highlight the need for a suitable educational strategy, which can be developed in collaboration with the leadership of each ED and team of hospital ethicists. (shrink)

Childhood cancers are life-threatening diseases that affect the whole family. During the treatment moral situations might arise. Research on how parents perceive moral challenges in childhood cancer care is sparse. The aim was to explore parents’ main concern, and how they deal with their main concern, when facing moral challenges in childhood cancer care. Data collection included focus group interviews with parents. The data analysis was carried out according to a classical theory and revealed the core category “Sheltering in chaos”. (...) The strategies to handle the main concern included “To bring the child through a life-saving trajectory” by “Balancing control” and “Deliberating of suffering. The consequences included feelings of being “Torn between roles”. “Familiarity” emerged as a facilitating factor to handle moral challenges. The results indicate that parents are torn between different roles, and that the care experience is improved through familiarity with the healthcare professionals. The following findings may inspire new ways of offering moral support to families in childhood cancer care. (shrink)

This is a qualitative examination of ethics consultation requests, outcomes, and ethics committee recommendations at a tertiary/quaternary pediatric hospital in the U.S. The purpose of this review of consults over an 18-year period is to identify specific trends in the types of ethical dilemmas presented in our pediatric setting, the impact of consultation and committee development on the number and type of consults provided, and any clinical features and/or challenges that emerged and contributed to the nature of ethical situations and (...) dilemmas. Furthermore, in reviewing clinical ethics consultation trends for nearly two decades, we can identify topic areas for further ethics education and training for ethics consultants, ethics committee members, and pediatric healthcare teams and professionals based on our experiences. Our study with nearly two decades of data prior to the COVID-19 pandemic can serve as groundwork for future comparisons of consultation requests and ethics support for pediatric hospitals prior to, during, and following a pandemic. (shrink)

Background Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged.Methods Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children’s hospitals and five programmatic domains.Results 104 children’s hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. (...) Academically-affiliated children’s hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5.Conclusions While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults. (shrink)

Johnson and colleagues (2015) report a retrospective review of the experience of an ethics consultation service at a single, highly specialized children's hospital over an 11-year period. Despite i...

Critical reflection on clinical ethics consultation is essential to the field. Johnson and colleagues (2015) have helpfully summarized the consultation experience of a children's specialty hospital...

Background Childhood cancers affect about 350 children every year in Sweden and are life-threatening diseases. During the treatment period, situations arise that can become morally challenging for the child. When knowing children’s values and morally challenging situations in childhood cancer care, targeted ethics support could be developed and used in care. Aim To explore children’s values and moral dilemmas ​​when undergoing cancer treatment. Methods This is a qualitative study based on empirical data. The data collection was conducted through three focus (...) group interviews and six individual interviews with children between 10 and 18 years (n = 16). A content analysis methodology was used to generate themes. Children who were/have been treated for cancer at three childhood cancer centres in Sweden were invited to participate. The study was approved by the Swedish Ethical Review Authority. The children’s participation was based on voluntariness and consent/assent. Findings During the analysis, five themes of values emerged: Personal relationships, Bodily ease and identity, Feeling in control and being involved, Positive distractions and Right care that is needed. Their moral dilemmas were thematized into: Should I consider others or not? Should I rest or not? and Should I refuse treatment or not? Conclusion Children undergoing cancer treatment want to have personal relationships with healthcare professionals. Their moral dilemmas were about questioning their own physical and psychological well-being against their expectations, the values of others and the treatment required. Further research is needed to understand how to deal with moral dilemmas in children undergoing cancer treatment. (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)

Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce. We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach (...) and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns. The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case. Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption. (shrink)

Limited data exist in the specific content of pediatric outpatient ethics consults as compared to inpatient ethics consults. Given the fundamental differences in outpatient and inpatient clinical care, we aimed to describe the distinctive nature of ethics consultation in the ambulatory setting. This is a retrospective review at a large, quaternary academic center of all outpatient ethics consults in a 6-year period. Encounter-level demographic data was recorded, and primary ethical issue and contextual features were identified using qualitative conceptual content analysis. (...) A total of 48 consults were identified representing 44 unique patients. The most common primary ethical issue was beneficence and best interest concern comprising 20 (42%) consults, followed by refusal of recommended treatment comprising 11 (23%) consults and patient preference/assent comprising 5 (10%) consults. The most common contextual features were staff-family communication dispute/conflict comprising 28 (58%) consults, followed by legal involvement comprising 25 (52%) consults and quality of life comprising 19 (40%) consults. The most common consulting specialty was hematology/oncology. Ethical issues encountered in the provision of outpatient pediatric care are distinct and differ from those in inpatient consults. Further research is necessary to identify strategies and educational gaps in outpatient ethics consultation to increase its effectiveness and utilization. (shrink)