Pediatric Ethics Research Articles

Ethical considerations for paediatrics during the COVID-19 pandemic: A discussion paper from the Australian Paediatric Clinical Ethics Collaboration.

Children have not been severely affected by SARS-CoV-2-related illness but are vulnerable to the economic and social deprivation arising from the pandemic. This document describes unique risks and burdens for children and their care givers during the COVID-19 pandemic.

When Do Pediatricians Call the Ethics Consultation Service? Impact of Clinical Experience and Formal Ethics Training

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.

Development and Retrospective Review of a Pediatric Ethics Consultation Service at a Large Academic Center.

The primary objective was to review pediatric ethics consultations (PECs) 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 oneyear. 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.

A Listening Tour: Pediatric Clinical Ethics Rounds

A two-year rounding program was initiated by the clinical ethics consult service (CECS) to improve ethics program integration and utilization at our 323-bed tertiary care pediatric hospital. Two critical variables were identified for improvement. One: identification of cases in which an ethics consult would have benefited clinical care but was not requested. Two: earlier detection of cases for which the medical team and/or family eventually sought ethics consultation but that worsened during the delay. Improvement relied on eliciting dialogue with the CECS by the medical team and/or patients and families, when it had either not occurred before or had not occurred when it would have been most beneficial. The indirect nature of the improvements sought posed a specific challenge: how does one elicit such action from others? How does a small program with less than one full-time equivalent position that is dedicated to clinical ethics, and little funding, effect such a process change across an organization with more than 600 physicians, 2,000 nurses, 600 medical students, and thousands of other clinicians and staff? The following accounts such an effort and the accompanying two-year study undertaken to document the results. The data presented demonstrate improvement in both identified variables: increased overall utilization of the CECS and earlier detection of cases in which the CECS is typically engaged.

Pediatric Assent and Treating Children Over Objection.

* Abbreviation: AAP — : American Academy of Pediatrics More than 20 years ago, the pioneering pediatric ethicist William Bartholome1 wrote a fiery letter to the editor of this journal because he thought a recently published statement on pediatric assent, from the Committee on Bioethics of the American Academy of Pediatrics (AAP), showed insufficient respect for children.2 That AAP statement, like its 2016 update, asserts that pediatric assent should be solicited only when a child’s dissent will be honored.3,4 Bartholome1 objected that pediatricians should always solicit children’s assent and that they should acknowledge and apologize when they treat children over their objections even when they must do so to promote children’s best interests. We think Bartholome1 was right. In this brief commentary, we elaborate on his perspective about the moral value of pediatric assent, and we suggest improvements to the corresponding clinical guidance. The AAP grounds the moral value of pediatric assent by noting, “We are obliged to act out of fundamental respect for other persons by virtue of their personal autonomy.” But in drawing on the concept of autonomy, the AAP invokes too narrow a conception of respect. Indeed, the AAP acknowledges that many children “lack the agency required to be truly autonomous agents.”3 If respect is grounded … Address correspondence to Jason Adam Wasserman, PhD, William Beaumont School of Medicine, Oakland University, ODH 412, 586 Pioneer Dr, Rochester, MI 48371. E-mail: wasserman{at}oakland.edu

Pediatric Ethics Consultation: Practical Considerations for the Clinical Ethics Consultant

Clinical ethics consultants face a wide range of ethical dilemmas that require broad knowledge and skills. Although there is considerable overlap with the approach to adult consultation, ethics consultants must be aware of differences when they work with infant, pediatric, and adolescent cases. This article addresses unique considerations in the pediatric setting, reviews foundational theories on parental authority, suggests practical approaches to pediatric consultation, and outlines current available resources for clinical ethics consultants who wish to deepen their skills in this area.

A Working Un-Conference to Advance Innovations Among Clinical Ethics Programs

In an effort to create new synergies to fill gaps in evaluation of value, assessment of quality, and definition of roles in clinical ethics programs we convened a meeting entitled Innovations in Clinical Ethics: A Working Un-Conference (the Un-Conference) in August 2018. The Un-Conference was conceived to be a working event aimed at promoting cross pollination and idea generation for innovative practices in clinical ethics. The event was attended by 95 individuals from 62 institutions, representing a wide diversity of healthcare systems, who believed in the concept and brought their enthusiasm and expertise to share with others. As a product of the Un-Conference, whitepaper groups developed summaries and broad overviews of areas that need to be further addressed within our field. The whitepapers are being published in this issue of The Journal of Clinical Ethics. The first three whitepapers highlight the broad themes of demonstrating value to the institution, quality assessment, and emerging roles for clinical ethics programs and ethicists. The final whitepaper offers guidance to clinical ethicists engaged in pediatric ethics work and, in conversation with the emerging roles article, thoughtfully reflects on the role of pediatric ethicists.

Bios and ethics in our complex adaptable systems

We, our bodies and spirits and our natural and social biotopes are complex adaptable systems [CAS’s], interdependent and vulnerable within natural, cultural and political biotopes, longing for life, health and happiness. Clinical and pediatric expertise and ethics are also integrated in many fields of competence and care for our integrated bios and for sustainable biotopes in nature and society. A Bioethical Imperative calls for protecting the complex and interdependent bios in nature and agriculture and in our human social, economic, corporate, cultural, and political bodies for the benefit of our children and ourselves, and for discussing ‘health’ and ‘improvement’ in ethical and not only in technical terms. The protection and promotion of healthy people, sustainable societies, and diverse and stable political bodies depend on basic economic accomplishments, healthy food, harmonious communities, preservation and diversity of cultures and environments, on individual dignity and social recognition, i.e. on gross happiness products [GHP’s] and not only on gross national products [GNP’s] measured in economic terms only.

Clinical Ethics in Pediatrics: An International Perspective

In this article, we first review the development of clinical ethics in pediatrics in the United States. We report that, over the last 40 years, most children's hospitals have ethics committees but that those committees are rarely consulted. We speculate that the reasons for the paucity of ethics consults might be because ethical dilemmas are aired in other venues. The role of the ethics consultant, then, might be to shape the institutional climate and create safe spaces for the discussion of difficult and sometimes contentious issues. Finally, we report how pediatric clinical ethics has evolved differently in a number of other countries around the world.

Content review of pediatric ethics consultations at a cancer center.

Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics of ethics consultations in pediatric patients at a cancer center. We retrospectively identified ethics consultations performed for patients diagnosed with cancer at ≤21 years of age who were treated in the Department of Pediatrics from 2007 to 2017. Using an established coding schema, two independent reviewers analyzed the content of ethics consultation notes and identified core ethical issues and relevant contextual issues. Demographic, clinical, and consultation-specific data were also collected. Thirty-five consultations were performed for 32 unique patients. The most commonly identified ethical issues were obligation to provide nonbeneficial treatment (29%) and resuscitation preferences (26%). Communication conflicts were the most commonly identified contextual issue (40%). There were two themes that emerged repeatedly but were not a part of the original coding schema-four consultations (11%) that involved physicians questioning their obligation to provide potentially toxic treatment in the setting of poor patient/parent compliance, and two consultations (6%) related to complex risk-benefit analysis in the setting of an invasive procedure with uncertain benefit. Pediatric ethics consultations are infrequent at this specialty cancer hospital. Ethical issues focused on treatment and end-of-life care and included a diversity of communication conflicts.

The zone of parental discretion and the complexity of paediatrics: A response to Alderson.

Alderson critiques our recent book on the basis that it overlooks children’s own views about their medical treatment. In this response, we discuss the complexity of the paediatric clinical context and the value of diverse approaches to investigating paediatric ethics. Our book focuses on a specific problem: entrenched disagreements between doctors and parents about a child’s medical treatment in the context of a paediatric hospital. As clinical ethicists, our research question arose from clinicians’ concerns in practice: What should a clinician do when he or she thinks that parents are choosing a treatment pathway that does not serve the child’s best interests? Alderson’s work, in contrast, focuses on the much broader issue of children’s role in decision-making about treatment and research. We argue that these different types of work are zooming in on different aspects of paediatric ethics, with its complex mix of agents, issues and relationships. Paediatric ethics overall needs a rich mix of approaches, investigating a range of different focal problems in order to further understanding. The zone of parental discretion is not incompatible with valuing children’s rights and views; its focus is a different element of a complex whole.

Intersex in the Age of Queer Bioethics

Queer Bioethics and the inventory of its potential populations include a wide range of queer subjects: lesbian parents, HIV-positive gay and bisexuals, transgender youth, and non-cisgendered individuals, to name a few. With the ethical dilemmas and ethical duties couched inside of a Queer Bioethics in mind, this article will consider one of the field’s most enduring citizens: the intersex child. More specifically, the figure of the intersex child with ovotesticular non-normativity will be scrutinized on ethical and clinical planes – a major aspect of queer bioethics is, after all, clinical ethics for queer populations. Ovotesticular conditions will be covered at length; we discuss different variations in addition to narrowing the topic to those with 46,XX and ambiguous genitalia, specifically those 75% diagnosed under the age of 20, and speak on issues related to this population. We will also briefly discuss the population of the 20% diagnosed under the age of 5 years old. Interventions will be discussed in all realms of intersex conditions – specifically ovotestes. We will conclude with a principalist approach to ethical topics such as autonomy, beneficence, and non-maleficence, weighing these principles equally and ultimately erring on the side of autonomy within pediatric ethics where possible.

Evaluation of a paediatric clinical ethics service.

To evaluate a paediatric clinical ethics service incorporating both normative and empirical analysis. Section 1: Review of consensus guidelines to identify emerging standards for clinical ethics services (CES) and evaluation of the service in relation to these. Section 2: Description of service activity data. Section 3: Feedback from clinical staff involved in clinical ethics consultations was collected using a web-based survey. Four guideline documents were reviewed, and clear emerging consensus standards were identified. Our service fulfils identified knowledge and skill core competencies and at least partially fulfils all of the identified service-level standards. Clinicians report that clinical ethics consultation decreases their moral distress. There is emerging consensus for staff competencies and service-level standards for CES. The role of CES in staff well-being needs to be explored. Collaborative, multi-modal research to develop standards and evaluate CES is needed.

Tele-UPCAT: study protocol of a randomised controlled trial of a home-based Tele-monitored UPper limb Children Action observation Training for participants with unilateral cerebral palsy

IntroductionA new rehabilitative approach, called UPper Limb Children Action Observation Training (UPCAT), based on the principles of action observation training (AOT), has provided promising results for upper limb rehabilitation in...

Ethics in Pediatric Endocrinology: Curriculum for Fellows and Faculty.

In clinical practice, ethical dilemmas are frequently faced by pediatric endocrinologists. This initiative's objectives were to (a) determine if endocrine fellows and faculty perceived that an effective ethics curriculum existed and (b) evaluate whether case-based modules would be an effective tool for ethics education. Participation was sought from eight large pediatric endocrine programs (home programs and affiliates of the Pediatric Endocrine Society's Ethics Committee members) after the distribution of eight case-based modules (geared mainly to fellows) and pre- and postsurveys. Questions examining self-reported knowledge (K) of the ethical pillars (beneficence, nonmaleficence, autonomy, and justice), attitudes (A) towards these, and the individual's likelihood of utilizing them in clinical practice (P), in addition to the need for/benefit of this curriculum, were assessed using a 5-point Likert scale. Six out of eight programs participated, with surveys completed by fellows (n = 29), faculty (n = 7), and advanced practitioners (n = 3). Of the respondents, only 20.3% believed an effective ethics curriculum was already in place. After module completion, KAP scores improved, with the greatest improvement seen in knowledge scores. Additionally, 94.9% of respondents strongly agreed (n = 26) or agreed (n = 11) that the curriculum would be a valuable addition to fellowship training. All faculty believed that the curriculum was helpful in imparting ethical principles of clinical practice. The findings suggest that this curriculum would be useful in knowledge advancement of ethical principles and could fulfill a long-standing need to provide clinical ethics education for faculty and fellows.

The Food and Drug Administration’s Federal Review of a Pediatric Muscular Dystrophy Protocol

IRBVolume 40, Issue 1 p. 18-20 COMMENTARY The Food and Drug Administration’s Federal Review of a Pediatric Muscular Dystrophy Protocol Donna L. Snyder MD, Donna L. Snyder MD pediatric ethics team lead and a pediatric ethicist U.S. Food and Drug Administration, Office of Pediatric Therapeutics in the Office of the Commissioner Snyder DL, Nelson RM. The Food and Drug Administration’s federal review of a pediatric muscular dystrophy protocol. IRB: Ethics & Human Research 2018;40(1):18-20.Search for more papers by this authorRobert M. Nelson MD, PhD, Robert M. Nelson MD, PhD deputy director of and a senior pediatric ethicist U.S. Food and Drug Administration, Office of Pediatric Therapeutics in the Office of the CommissionerSearch for more papers by this author Donna L. Snyder MD, Donna L. Snyder MD pediatric ethics team lead and a pediatric ethicist U.S. Food and Drug Administration, Office of Pediatric Therapeutics in the Office of the Commissioner Snyder DL, Nelson RM. The Food and Drug Administration’s federal review of a pediatric muscular dystrophy protocol. IRB: Ethics & Human Research 2018;40(1):18-20.Search for more papers by this authorRobert M. Nelson MD, PhD, Robert M. Nelson MD, PhD deputy director of and a senior pediatric ethicist U.S. Food and Drug Administration, Office of Pediatric Therapeutics in the Office of the CommissionerSearch for more papers by this author First published: 01 January 2018 https://doi.org/10.1002/eahr.401003Citations: 1 Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat No abstract is available for this article.Citing Literature Volume40, Issue1January-February 2018Pages 18-20 RelatedInformation

United States Pediatric Ethics Consult Service Requests: Why, Who, and Sufficient?

United States Pediatric Ethics Consult Service Requests: Why, Who, and Sufficient?

Survey highlights the need for specific interventions to reduce frequent conflicts between healthcare professionals providing paediatric end-of-life care.

This study explored how paediatric healthcare professionals experienced and coped with end-of-life conflicts and identified how to improve coping strategies. A questionnaire was distributed to all 2300 professionals at a paediatric university hospital, covering the frequency of end-of-life conflicts, participants, contributing factors, resolution strategies, outcomes and the usefulness of specific institutional coping strategies. Of the 946 professionals (41%) who responded, 466 had witnessed or participated in paediatric end-of-life discussions: 73% said these had led to conflict, more frequently between professionals (58%) than between professionals and parents (33%). Frequent factors included professionals' rotations, unprepared parents, emotional load, unrealistic parental expectations, differences in values and beliefs, parents' fear of hastening death, precipitated situations and uncertain prognosis. Discussions with patients and parents and between professionals were the most frequently used coping strategies. Conflicts were frequently resolved by the time of death. Professionals mainly supported designating one principal physician and nurse for each patient, two-step interdisciplinary meetings - between professionals then with parents - postdeath ethics meetings, bereavement follow-up protocols and early consultations with paediatric palliative care and clinical ethics services. End-of-life conflicts were frequent and predominantly occurred between healthcare professionals. Specific interventions could target most of the contributing factors.

Paediatric clinical ethics in Australia and New Zealand: a survey

ObjectivesTo quantify the presence, purpose, function, governance and funding of clinical ethics services (CES) in tertiary paediatric hospitals in Australia and New Zealand.Design, setting and participantsA descriptive, quantitative survey was...

Shared Decision‐Making in Pediatrics: Honoring Multiple Voices

AbstractHistorically, parents looking for guidance turned to a small cadre of trusted individuals such as grandparents and pediatricians. In the Internet era, this paradigm has shifted. With a few keystrokes, anxious parents have access to a seemingly endless array of opinions from faceless sources with unknown agendas. For some parents, this can cause more uncertainty, and for the parents of a child with a medical condition, navigating this information can be overwhelming.In this modern paradigm, the pediatrician's duty has also become more complex, especially with the shift from paternalism to patient autonomy in medical decision‐making. It is within this context that Alan Fleischman's book, Pediatric Ethics: Protecting the Interests of Children, should be examined. A pediatrician and neonatologist, Fleischman has witnessed this evolution over more than five decades of practice. As a clinical and academic bioethicist, he has also witnessed a transformation in the field of bioethics, with shifting perspectives on areas such as research ethics and medical decision‐making. Because of his rich experience and deep understanding of the past and present of ethical issues in pediatrics, Fleischman approaches this subject with a perspective that warrants attention and thoughtful consideration.