The transition from the paternalistic paradigm of the Hippocratic tradition to the present model of shared decision making has altered the patient–doctor relationship. This change has engendered conflicts between patients and physicians, especially in pediatric medicine, where the patients are depen­dent on their parents because of their inability to consent to an intervention independently. Navigating this complex relationship can become particularly fraught when medical futility is invoked. This situation is complicated further by the divergent approaches to shared decision making among (...) physicians and the ethical perspectives these positions reflect. Catholic doctrine on the role of parents in medical-ethical decision making provides insight into navigat­ing these difficult clinical issues and ideologies. (shrink)

Paternalism in the medical care of children is appropriate and ethically justifiable. However, dilemmatic disagreement by paternalistic agents as to which clinical choice is in the child's best interest may occur because of the underlying conflict between two rival standards for the moral value of life: longevity versus quality. Neither standard is unreasonable. Either could be the basis for choice of medical care by the parents or by the pediatrician. Having the child choose between options disputed by his (...) parents and the pediatrician is unlikely to resolve their conflict. Exercise of informed consent by the adolescent requires agreement by his parents to relinquish their paternalistic veto. The probable best-interest choice by the child when he has matured could be reasonably made from either standard. Therefore, the longevity/quality of life question ought not ordinarily to be foreclosed by paternalistic authority which opts for one standard to the exclusion of the other. Medical interventions, paternalistically determined, are justified in the face of deteriorating quality, but only as long as the interventions themselves do not cause deterioration. Application of this limitation of paternalism to the zone of agreement between the rival life standards is made to clinical case examples. Multiple extrinsic criteria may measure the quality of life. Three quality factors, sensation of pain, capacity to communicate and physical functioning are considered. The extent of the zone of agreement between the two life standards varies because quality of life is a relative good, contingent both upon which extrinsic criteria are selected to assess it and upon the priorities which are set among these criteria. (shrink)

Decisions regarding the end-of-life of minor patients are amongst the most difficult areas of decision-making in pediatric health care. In this field of medicine, such decisions inevitably occur early in human life, which makes one aware of the fact that any life—young or old—cannot escape its temporal nature. Belgium and the Netherlands have adopted domestic regulations, which conditionally permit euthanasia and physician-assisted suicide in minors who experience hopeless and unbearable suffering. One of these conditions states that the minor involved (...) must be legally competent and able to express an authentic and lasting wish to die. This contribution is different from other legal texts on end-of-life decisions in modern health care. Foremost, it deals with the role time-bound components play in our views on the permissibility of such decisions with regard to minor patients. While other disciplines provide profound reflections on this issue, from a legal point of view this side has hardly been explored, let alone examined with regard to its relevance for the legal permissibility of end-of-life decisions in pediatrics. Therefore, the manuscript inquires whether there are legal lessons to be learned if we look more closely to temporality-related aspects of these end-of-life decisions, particularly in connection to a minor patient’s assumable ability to choose death over an agonizing existence. (shrink)

In a recent article, Tyler Tate argues that the suffering of children — especially children with severe cognitive impairments — should be regarded as the antithesis of flourishing, where flourishing is relative to one’s individual characteristics and essentially involves receiving care from others. Although initially persuasive, Tate’s theory is ambiguous in several ways, leading to significant conceptual problems. By identifying flourishing with receiving care, Tate raises questions about the importance of care that he does not address, giving (...) rise to a bootstrapping problem. By making flourishing relative to an individual’s circumstances, Tate is forced to confront questions about exactly how relative it can be, suggesting the possibility that, on his view, to flourish is simply to be however one is. In an attempt to surmount these problems, I offer a revision and restatement of Tate’s view that defines the relationship between individualized flourishing and the more conventional, species-relative concept, and describe more clearly the role that care should play with respect to flourishing — one that is instrumental and not merely constitutive. Even this restated view, however, fails to answer difficult questions about how one should respond to the medical needs of some children, highlighting the fact that a conceptual analysis of suffering may do little, in the end, to untangle ethical dilemmas in the care of severely ill children. (shrink)

Physician religion/spirituality has the potential to influence the communication between physicians and parents of children at the end of life. In order to explore this relationship, the authors conducted two rounds of narrative interviews to examine pediatric physicians’ perspectives (N=17) of how their religious/spiritual beliefs affect end–of–life communication and care. Grounded theory informed the design and analysis of the study. As a proxy for religiosity/spirituality, physicians were classified into the following groups based on the extent to which religious/spiritual language (...) was infused into their responses: Religiously Rich Responders (RRR), Moderately Religious Responders (MRR), and Low Religious Responders (LRR). Twelve of the 17 participants (71%) were classified into the RRR or MRR groups. The majority of participants suggested that religion/spirituality played a role in their practice of medicine and communication with parents in a myriad of ways and to varying degrees. Participants used their religious/spiritual beliefs to support families’ spirituality, uphold hope, participate in prayer, and alleviate their own emotional distress emerging from their patients’ deaths. (shrink)

There is no paucity of academic studies, medical literature, or media attention given to concerns about gender ideology and being transgender. When reporting their findings, however, some researchers and practitioners working from a purely secular perspective overstep medical observations to make metaphysical pronouncements. This causes considerable confusion and stifles dialogue that could occur if the line between medicine and philosophy were clearly delineated. Properly understood, transgender describes an observable distress due to incongruence between one’s birth sex and gender identity. Conversely, (...) gender ideology is a metaphysical conclusion, which argues that a person’s gender is fluid and open to personal choice. Clearly distinguishing between these can help families, clinicians, and society provide medically appropriate and culturally competent care to those with gender dysphoria, especially children. (shrink)

The original “Dutch Protocol”—the treatment model comprised of puberty blockers, cross‐sex hormones, and surgery—was intended to improve the mental and physical health of pediatric patients experiencing distress over their sexed bodies. Consequently, both researchers and clinicians have couched eligibility for treatment and measures of treatment efficacy in terms of the interventions’ effects on outcomes such as gender dysphoria, depression, anxiety, and suicide. However, recent systematic reviews have concluded that the scientific evidence supporting these interventions is uncertain, leading to significant international (...) differences in what treatments are offered to youth. Against this backdrop, a different argumentative approach has emerged in support of gender‐affirming care. This approach appeals not to reductions in patient morbidity or mortality but to patient autonomy, where medical intervention is pursued as a means to the satisfaction of a patient's “embodiment goals.” In this article, I raise objections to autonomy‐based justifications for pediatric gender‐affirming care, concluding that these arguments misunderstand the place of autonomy in clinical decision‐making and, consequently, put patients at risk of medical harm. (shrink)

Chiropractors commonly treat children for a variety of ailments by manipulating the spine to correct a ‘vertebral subluxation’ or a ‘vertebral subluxation complex’ alleged to be a cause of disease. Such treatment might begin soon after a child is born. Both major American chiropractic associations – the International Chiropractic Association and the American Chiropractic Association – support chiropractic care for children, which includes subluxation correction as a treatment or preventive measure. I do not know of any credible evidence to (...) support chiropractic subluxation theory. Any attempt to manipulate the immature, cartilaginous spine of a neonate or a small child to correct a putative chiropractic subluxation should be regarded as dangerous and unnecessary. Referral of a child to a chiropractor for such treatment should not be considered lest a bad outcome harms the child or leads to a charge of negligence or malpractice. (shrink)

The purpose of this overview of published articles on decision making in paediatric care was to identify important aspects of its possible use in clinical practice and to obtain a base for future research. A literature review was undertaken utilizing snowball sampling to identify articles because of the diversity present within the area of decision making in paediatric care. The databases PubMed and CINAHL were used. The search was limited to articles published in English during the (...) period 1994-2004. The analysis entailed a series of comparisons across articles, focusing on major areas of enquiry and patterns of results. Various levels of decision making are described because these seem to form a basis for how decisions are made. Concepts found to be of importance for decision making are described under the following headings: competence, the child’s best interests, knowledge, values and attitudes, roles and partnership, power, and economy. Further research is suggested. (shrink)

In pediatric critical care, nurses are the primary caregivers for critically ill children and are particularly vulnerable to moral distress. There is limited evidence on what approaches are effective to minimize moral distress among these nurses. To identify intervention attributes that critical care nurses with moral distress histories deem important to develop a moral distress intervention. We used a qualitative description approach. Participants were recruited using purposive sampling between October 2020 to May 2021 from pediatric critical care (...) units in a western Canadian province. We conducted individual semi-structured interviews via Zoom. A total of 10 registered nurses participated in the study. Four main themes were identified: (1) “I’m sorry, there’s nothing else”: increasing supports for patients and families; (2) “someone will commit suicide”: improving supports for nurses: (3) “Everyone needs to be heard”: improving patient care communication; and (4) “I didn’t see it coming”: providing education to mitigate moral distress. Most participants stated they wanted an intervention to improve communication among the healthcare team and noted changes to unit practices that could decrease moral distress. This is the first study that asks nurses what is needed to minimize their moral distress. Although there are multiple strategies in place to help nurses with difficult aspects of their work, additional strategies are needed to help nurses experiencing moral distress. Moving the research focus from identifying moral distress towards developing effective interventions is needed. Identifying what nurses need is critical to develop effective moral distress interventions. (shrink)

In summer 2022, six points of consensus emerged from a symposium addressing the question, “In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?” (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of (...) children removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers. (shrink)

This book examines the many ethical issues that are encountered in the Pediatric Intensive Care Unit. It supports pediatricians, nurses, residents, and other providers in their daily management of critically ill children with the dilemmas that arise. It begins by examining the evolution of pediatric critical care, and who is now impacted by this advancing medical technology. Subsequent chapters explore specific ethical concerns and controversies that are commonly encountered. These topics include how to conduct end-of-life discussions with families (...) facing a myriad of challenging choices. It goes on to explore the concept of futility, and what that does and does not mean in the pediatric ICU setting. Controversial subjects such as children as organ donors, particularly using donation after cardiac death, in addition to issues surrounding the declaration of brain death are covered. Additional chapters address resource allocation, and also analyze the use of long-term technology in chronically critically ill children. Chapters include case examples with guidance on how to work through similar difficulties and decision-making. While this book is specifically targeted for care providers at the ICU bedside, it is also of benefit to medical students, students in bioethics, practicing ethical consultants and families who are dealing with critically ill children. (shrink)

According to various accounts, intervention in pediatric decisions is justified either by the best interests standard or by the harm principle. While these principles have various nuances that distinguish them from each other, they are similar in the sense that both focus primarily on the features of parental decisions that justify intervention, rather than on the competency or authority of the parties that intervene. Accounts of these principles effectively suggest that intervention in pediatric decision making is warranted for both physicians (...) and the state under precisely the same circumstances. This essay argues that there are substantial differences in the competencies and authorities of physicians and the state, and that the principles that guide their interventions should also be conceived differently. While both the best interests standard and the harm principle effectively incorporate important aspects of physicians’ ethical obligations, neither adequately reflects the state’s ethical obligations. In contrast to physicians, the state has major obligations of distributive justice and neutrality that should form an integral part of any proposed ethical principles guiding state intervention in pediatric decision making. The differences are illustrated by examining recent cases involving parental refusal of chemotherapy in aboriginal Canadian communities and parental refusal of blood transfusions by Jehovah’s Witnesses. (shrink)

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, (...) parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. (shrink)

Background Pediatric critical care physician attitudes about withdrawal of ventricular assist devices and extracorporeal membrane oxygenation in cases of medical futility are poorly defined. Our aim was to define current attitudes regarding the withdrawal of these devices. Methods IRB-approved, cross-sectional observational survey conducted among pediatric critical care attending physicians and fellow physicians in the United States between 2016 and 2017. Data was collected anonymously and statistically analyzed. Results A total of 158 physicians responded with 67% being attending physicians. (...) Compared to a VAD, a higher percentage had taken care of a patient on ECMO where the device was turned off because care was believed to be futile, including currently. Nearly all reported that it can be ethically permissible to withdraw support from a patient with a VAD and on ECMO, but varied opinions existed as to who should ultimately make this decision if the patient/their family disagrees. More respondents agreed that a patient/their family should agree to withdrawal of VAD or ECMO support prior to initiation if futility is later determined and that protocols should be created for VAD and ECMO withdrawal. Conclusion Most pediatric critical care physicians felt that it can be ethically permissible to withdraw VAD and ECMO support. Our study indicates that pediatric VAD and ECMO withdrawal protocols are desired, but further investigation is needed to determine how to best design protocols that would incorporate multiple stakeholders. (shrink)

Children in the pediatric intensive care unit are indisputably in a vulnerable position, dependent on nurses to acknowledge their needs. It is assumed that children should be approached from a holistic perspective in the caring situation to meet their caring needs. The aim of the study was to unfold the meaning of nursing care through nurses’ concerns when caring for children in the pediatric intensive care unit. To investigate the qualitative aspects of practice embedded in the caring (...) situation, the interpretive phenomenological approach was adopted for the study. The findings revealed three patterns: medically oriented nursing—here, the nurses attend to just the medical needs, and nursing care is at its minimum, leaving the children’s needs unmet; parent-oriented nursing care—here, the nursing care emphasizes the parents’ needs in the situation, and the children are viewed as a part of the parent and not as an individual child with specific caring needs; and smooth operating nursing care orientation—here, the nursing care is focused on the child as a whole human being, adding value to the nursing care. The conclusion drawn suggests that nursing care does not always respond to the needs of the child, jeopardizing the well-being of the child and leaving them at risk for experiencing pain and suffering. The concerns present in nursing care has been shown to be the divider of the meaning of nursing care and need to become elucidated in order to improve the cultural influence of what can be seen as good nursing care within the pediatric intensive care unit. (shrink)

Pediatric health care workers often perform, promote, and advocate use of public funds for animal research . We aim to determine whether HCW consider common arguments in support of AR convincing.

In lieu of an abstract, here is a brief excerpt of the content:Closing the Gaps in Pediatric HIV/AIDS Care, One Step at a TimeLisa V. Adams, Helga Naburi, Goodluck Lyatuu, Paul Palumbo, and C. Fordham von ReynFatuma's* doctors were completely perplexed. It was 2003 and she had returned to the DARDAR clinic in her hometown of Dar es Salaam, Tanzania three times that week with vague complaints of various pains and aches. Her doctors were considering whether these symptoms were (...) due to the initiation of her recent treatment with antiretroviral medications for her HIV infection or related to the last administration of the investigational tuberculosis (TB) vaccine that the DARDAR Health Study was evaluating. Fatuma's doctor, Dr. Lillian Mtei, consulted with Dartmouth's chief of Infectious Disease, Dr. Ford von Reyn, who happened to be in Dar that week on a site visit. Neither physician could determine the basis for her symptoms. Dr. Mtei returned to the exam room once more and this time emerged with the answer: Fatuma had just learned that her three year old daughter was HIV-infected, likely contracted from Fatuma during or shortly after she gave birth to her daughter. Fatuma believed that her HIV diagnosis was a death sentence for her daughter since antiretroviral therapy was not widely available for children.Dr. von Reyn, Dartmouth's lead clinical researcher in Africa and a father, knew too well the harsh reality of inequities in a resource-limited country. He turned to Dr. Mtei and said decidedly, "we need to do something about this."Thus the DARDAR Pediatric Program was born.Pediatric HIV: A Neglected DiseaseThe need for HIV treatment among children in Tanzania, as in most of sub-Saharan Africa, is compelling. At the end of 2009, approximately 160,000 children aged zero to fourteen in Tanzania were living with HIV (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2011). Even with successful roll out of prevention of mother to child transmission programs in Tanzania, there were nearly 29,000 perinatal infections in 2009. As of December 2010, only 18% of these were enrolled in HIV treatment programs (UNAIDS, 2011; World Health Organization [WHO], 2011). Without antiretroviral therapy (ART), one-half of HIV-infected children will die before their second birthday. Since clinical research to determine efficacy and safety of new medical treatments is conducted almost exclusively in adults, provision of new medical treatments to [End Page 75] children always lags behind advances for adults. Furthermore, children are often underrepresented in programs for antiretroviral drugs for the following reasons: 1) they are not prioritized for care; 2) facilities lack infant diagnostic capabilities; 3) there is limited pediatric HIV training and consequently, a shortage of pediatric providers; and 4) pediatric antiretroviral formulations are frequently unavailable. The unacceptable delays in pediatric HIV drug development and treatment access led the international organization Drugs for Neglected Diseases initiative to publish an editorial in which they referred to pediatric HIV as a "neglected disease" (Lallemant, Chang, Cohen, & Pecoul, 2011).The Tip of the Iceberg: More than Just MedicinesWith a grant from the New York-based Foundation for the Treatment of Children with AIDS, the DARDAR Pediatric Program, a joint collaboration between Geisel School of Medicine at Dartmouth and Muhimbili University of Health and Allied Sciences, began seeing patients in May 2006. It was the first dedicated pediatric HIV Care and Treatment Center in Tanzania and operates in accordance with Tanzania's National AIDS Control Programme's guidance. Testing for both children and infants (the latter of which requires a more sophisticated assay) is available.The day the clinic opened we celebrated this collaborative effort that would provide HIV-infected children in Dar es Salaam access to antiretroviral treatment. One of our first patients was a six-year-old boy whose mother, like Fatuma, was a participant in our TB vaccine trial. She had been advised to bring her son to us for HIV screening. Her son looked healthy so she was surprised and understandably distraught when his test results indicated that not only was he HIV-infected, but his CD4 percentage was very low. His mother was reluctant to have him started on antiretrovirals given his general appearance and young age—and that he was... (shrink)

Person‐centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of (...) universal design put forth in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person‐centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person‐centred communication is supported in paediatric care. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of (...) the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. (...) Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care. (shrink)

Objectives To characterize the prevalence and content of pediatric triage policies.Methods We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators.Results Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children’s hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions (...) shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions.Conclusions While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities. (shrink)

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 (...) patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

This paper offers a narrative approach to understanding the process of clinical reasoning in complex cases involving medical uncertainty, moral ambiguity, and futility. We describe a clinical encounter in which the pediatric health care team experienced a great deal of conflict and distrust as a result of an ineffective process of interpretation and communication. We propose a systematic method for analyzing the technical, ethical, behavioral, and existential dimensions of the clinical reasoning process, and introduce the Clinical Reasoning Discussion Tool—a (...) dialogical and interpretive device aimed at improving communication, understanding, empathy, and moral deliberation in the clinical setting. (shrink)

Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, fraught with healthcare (...) providers’ biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers’ biases and disparities that exist within pediatric palliative care. (shrink)

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life (...) class='Hi'>care, bioethics, and health policy discuss if age should guide rationing decisions. (shrink)

The aim of this study was to develop the concept of the dignified death of children in Brazilian pediatric intensive care units (PICUs). The Hybrid Model for Concept Development was used to develop a conceptual structure of dignified death in PICUs in an attempt to define the concept. The fieldwork study was carried out by means of in-depth interviews with nine nurses and seven physicians working in PICUs. Not unexpectedly, the concept of dignified death was found to be a (...) complex phenomenon involving aspects related to decisions made by the multidisciplinary team as well as those related to care of the child and the family. Knowledge of the concept’s dimensions can promote reflection on the part of healthcare professionals regarding the values and beliefs underlying their conduct in end-of-life situations. Our hope is that this study may contribute to theoretic and methodological development in the area of end-of-life care. (shrink)

The aim of this study was to develop the concept of the dignified death of children in Brazilian pediatric intensive care units . The Hybrid Model for Concept Development was used to develop a conceptual structure of dignified death in PICUs in an attempt to define the concept. The fieldwork study was carried out by means of in-depth interviews with nine nurses and seven physicians working in PICUs. Not unexpectedly, the concept of dignified death was found to be a (...) complex phenomenon involving aspects related to decisions made by the multidisciplinary team as well as those related to care of the child and the family. Knowledge of the concept’s dimensions can promote reflection on the part of healthcare professionals regarding the values and beliefs underlying their conduct in end-of-life situations. Our hope is that this study may contribute to theoretic and methodological development in the area of end-of-life care. (shrink)

This commentary responds to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?” We argue that Gorin's case against pediatric gender‐affirming care rests upon numerous false conceptual binaries: female/male, public/private, objective/subjective, and medically necessary/elective. Drawing on feminist bioethics, we show how such dichotomous thinking is both inaccurate and marginalizing of gender minorities.

This book assists health care providers to understand the specific interplay of the roles and relationships currently forming the debates in pediatric clinical ethics. It builds on the fact that, unlike adult medical ethics, pediatric ethics begins within an acutely and powerfully experienced dynamic of patient-family-state-physician relationship. The book provides a unique perspective as it interacts with established approaches as well as recent developments in pediatric ethics theory, and then explores these developments further through cases. The book first focuses (...) on setting the stage by introducing a theoretical framework and elaborating how pediatric ethics differ from non-pediatric ethics. It approaches different theoretical frameworks in a critical manner drawing on their strengths and weaknesses. It helps the reader in developing an ability to engage in ethical reasoning and moral deliberation in order to focus on the wellbeing of the child as the main participant in the ethical deliberation, as well as to be able to identify the child’s moral claims. The second section of the book focuses on the practical application of these theoretical frameworks and discusses specific areas pertaining to decision-making. These are: the critically ill child, new and enduring ethical controversies, and social justice at large, the latter of which includes looking at the child’s place in society, access to healthcare, social determinants of health, and vaccinations. With the dynamic changes and challenges pediatric care faces across the globe, as well as the changing face of new technologies, no professional working in the field of pediatrics can afford not to take due note of this resource. (shrink)

Pediatric research without the potential for clinical benefit is vital to improving pediatric medical care. This research also raises ethical concern and is regarded by courts and commentators as unethical. While at least 10 justifications have been proposed in response, all have fundamental limitations. This article describes and defends a new justification based on the fact that enrollment in clinical research offers children the opportunity to contribute to a valuable project. Contributing as children to valuable projects can benefit individuals (...) in two ways. First, individuals may come to ?embrace? the contributions they made as children. Second, contributing to valuable projects can lead to a better overall life. Because these potential benefits can outweigh small research risks, they provide a justification for pediatric research without the potential for clinical benefit, when it poses low risks and has the potential to benefit others in important ways. (shrink)

Not long after matriculation—sometimes even before—medical students begin hearing the question, "So, what are you going into?" It can be heard as a colloquial version of a practical question, "To which type of residency are you planning to apply?" Some will evade the question, claiming, perhaps sincerely, to be fascinated by everything from radiology to geriatrics, open to all possible paths. Others will acknowledge that they enjoy or dread working with children, that they crave long-term relationships or bursts of adrenaline, (...) that they are drawn to the knife or sickened at the sight of blood. A smaller number will confess to having a clear vision of their futures, perhaps a desire to... (shrink)

Consent for pediatric health care has been evolving for 50 years. Norms for child-rearing and laws concerning child neglect and child abuse are also evolving. Brummett correctly describes th...

Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease’s natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care network deals with a large variety of issues. Little consideration has been given to the variety of intervention areas of psychology in PPC that concern the whole life span of the patient and family. The PPC network is composed by a multidisciplinary team of palliative (...) care specialists that intervenes at home, in the hospital and in every place where the patient is living. The network coordinates different public health services to respond to clinical, psychosocial and spiritual needs. In these scenarios, the psychological need is not a single event but a moment inserted in the complexity of the child’s needs. This retrospective monocentric project consists of an analysis of characteristics of psychological interventions in our PPC service. The time frame taken into consideration is 2019–2020, analyzing the clinical records of 186 patients of Pediatric Palliative Care and Pain Service of Veneto Region. The areas that emerged in the analysis show how the intervention of the psychologist in PPC does not concern only end-of-life, but a series of topics that are significant for the family to guarantee psycho-social wellbeing oriented toward the best quality of life. In conclusion, these different topics highlight the complexity of the child and family experience. This variety must be taken into consideration, the psychologist must increase holistic support with a dedicated skills curriculum. (shrink)

The coronavirus (COVID-19) pandemic has challenged the dental health profession in an unprecedented manner. Suspension of elective dental care across the United States during the initial phase of the pandemic was necessary to prevent viral transmission. The emergency dental care that was provided had to be tailored to minimize the generation of aerosols. With the suspension of elective care, over time, the proportion of dental emergencies was anticipated to rise. Dentists who care for children have continued (...) to provide emergency dental treatment to this vulnerable population. Treatment decisions for pediatric dental emergencies had to be tailored to principles of public health that best mitigated risk of viral transmission. Decisions needed to balance the benefits of chosen treatment modality for the individual child with the risk of viral transmission to dental professionals and their staff, patients, and community. The paucity of reliable research for dentists to aid in clinical decision making may have left careproviders feeling ethically and morally insecure in shifting from a patient-centered to a community-centered paradigm. We present analysis of four pediatric emergency case scenarios that are representative of those likely to present to a private practice, academic setting, or emergency department during the pandemic. This analysis aims to empower dentists who care for children to implement the American Dental Association’s Principles of Ethics & Code of Professional Conduct within the context of a global health crisis. (shrink)

BackgroundWeChat is the main social platform in China, characterized by its versatility and ease of communication. This study aimed to explore the effect of a WeChat-platform-based education and care program on relieving anxiety, depression, and post-traumatic stress disorder in parents of pediatric and adolescent patients with osteosarcoma.MethodsIn total, 48 patients and 86 parents were enrolled in this randomized, controlled study and then assigned to the WBEC program and the usual education and care program for 6 months as a (...) 1:1 ratio.ResultsParents in the WBEC group had lower Hospital Anxiety and Depression Scale for anxiety scores at M3 and M6 when compared to the UEC group, while anxiety rate was only decreased at M3 in the WBEC group. Meanwhile, parental HADS for depression scores were reduced at M3 and M6 in the WBEC group when compared with the UEC group; while depression rate remained the same. Parental Impact of Event Scale-Revised scores were slightly reduced among the WBEC group at M6 when compared with the UEC group [12.0 : 10.0–20.8] vs. 15.0 ], but not statistically significant.ConclusionWeChat-platform-based education and care is considered a feasible intervention to reduce anxiety and depression in parents of pediatric and adolescent patients with osteosarcoma, while also providing mild relief from PTSD. (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)