Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

This paper addresses the just distribution of vaccines against the SARS-CoV-2 virus and sets forth an ethical framework that prioritises frontline and essential workers, people at high risk of severe disease or death, and people at high risk of infection. Section I makes the case that vaccine distribution should occur at a global level in order to accelerate development and fair, efficient vaccine allocation. Section II puts forth ethical values to guide vaccine distribution including helping people with the greatest need, (...) reducing health disparity, saving the most lives and promoting narrow social utility. It also responds to objections which claim that earlier years have more value than later years. Section III puts forth a practical ethical framework to aid decision-makers and compares it with alternatives. (shrink)

Volume 20, Issue 7, July 2020, Page 128-132.

The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent’s refusal to provide consent for a child’s medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations to parents, and making decisions on behalf (...) of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard. (shrink)

Clinical ethics training programs are responsible for preparing their trainees to be competent ethics consultants worthy of the trust of patients, families, surrogates, and healthcare professionals. While the American Society for Bioethics and Humanities (ASBH) offers a certification examination for healthcare ethics consultants, no tools exist for the formal evaluation of ethics trainees to assess their progress toward competency. Medical specialties accredited by the Accreditation Council for Graduate Medical Education (ACGME) use milestones to report trainees’ progress along a continuum of (...) professional development as a means of “operationalizing and implementing” medical competencies. Utilizing the Core Competencies for Healthcare Ethics Consultation and the ACGME and American Board of Pediatrics’ (ABP) Pediatric Milestones Project, we developed milestones for 17 subcompetencies in clinical ethics consultation and academic bioethics. As the field of clinical ethics becomes more standardized, such tools will be needed to promote the development of robust training programs and to certify that their graduates are competent practitioners. (shrink)

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)

Our aims are to set forth a multiprinciple system for selecting among clinical trials competing for limited space in an immunotherapy production facility that supplies products under investigation by scientific investigators; defend this system by appealing to justice principles; and illustrate our proposal by showing how it might be implemented. Our overarching aim is to assist manufacturers of immunotherapeutic products and other potentially breakthrough experimental therapies with the ethical task of prioritizing requests from scientific investigators when production capacity is limited.

Clinical ethics consultants provide a range of services in hospital settings and in teaching environments. Training to achieve the skills needed to meet the expectations of employers comes in various forms, ranging from on-the-job training to formal fellowship training programs. We surveyed graduates of clinical ethics fellowships to evaluate their self-reported preparedness for their first job after fellowship training. The results indicated several areas of need, including greater exposure to program-building skills, quality improvement skills, and approaches to working with members (...) of higher administration. These data will be of use to educators as well as to fellows who advocate for elements of training in preparation for their first position. (shrink)

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public (...) policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity. The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high, use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority. Even if the sampled population were more …. (shrink)

Thousands of U.S. parents choose to refuse or delay the administration of selected vaccines to their children each year, and some choose not to vaccinate their children at all. While most physicians continue to provide care to these families over time, using each visit as an opportunity to educate and encourage vaccination, an increasing number of physicians are choosing to dismiss these families from their practice unless they agree to vaccinate their children. This paper will examine this emerging trend along (...) with the reasons given by those who advocate such an approach. I will argue that the strategy of refusing to allow families into a clinic unless they agree to vaccinate their children is misguided, and the arguments for doing so fail to stand up to close scrutiny. Such a strategy does not benefit the child or the health of the community, and may have a negative impact on both. Furthermore, some of the arguments in support of dismissal policies ignore the importance of professional obligation and appear to favor self-interest over the interest of the patient. (shrink)

With each novel infectious disease outbreak, there is scholarly attention to healthcare providers’ obligation to assume personal risk while they care for infected patients. While most agree that healthcare providers have a duty to assume some degree of risk, the extent of this obligation remains uncertain. Furthermore, these analyses rarely examine healthcare institutions’ obligations during these outbreaks. As a result, there is little practical guidance for healthcare institutions that are forced to weigh whether or when to exclude healthcare providers from (...) providing care or allow them to opt out from providing care to protect themselves. This article uses the COVID-19 pandemic to examine the concept of risk and the professional duties of both healthcare providers and healthcare institutions, and proposes a framework that can be used to make concrete institutional policy choices. This framework should be a useful tool for any hospital, clinic, or health agency that must make these choices during the current pandemic and beyond. (shrink)

In Bester’s article (2018) challenging the use of the harm principle and advocating sole reliance on the use of a best interest standard (BIS) in pediatric decision-making, we believe that the auth...

The American Academy of Pediatrics Task Force on Circumcision published its policy statement and technical report on newborn circumcision in September 2012.1 ,2 Since that time, some individuals and groups have voiced objections to the work of the Task Force, while others have conveyed their support. The AAP task force is pleased that the policy statement and technical reports on circumcision have stimulated debate on this topic and welcomes respectful discussion and dialogue about the scientific and ethical issues that surround (...) neonatal circumcision. We believe this is a complex issue that does not lend itself to simplistic solutions. The Task Force encourages those of all viewpoints to contribute to a vibrant, thoughtful and respectful evidence-based dialogue. We appreciate that the free exchange of competing ideas is a necessary component of scientific discovery. We also recognise that all clinical decisions carry ethical dimensions and that a respectful and thoughtful dialogue about these issues is important. However, the Task Force also feels strongly that this debate and the academic literature are demeaned when those with an ideological agenda disseminate inaccurate information, misapply scientific principles, make accusations that are unsupported, communicate in a vitriolic tone, and attempt to discredit and mischaracterise alternative views and those who hold them. Healthy debate and …. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)

There is a growing trend of refusal of blood transfusions from COVID-19 vaccinated donors. We highlight three cases where parents have refused blood transfusions from COVID-19 vaccinated donors on behalf of their children in the setting of congenital cardiac surgery. These families have also requested accommodations such as explicit identification of blood from COVID-19 vaccinated donors, directed donation from a COVID19 unvaccinated family member, or use of a non-standard blood supplier. We address the ethical challenges posed by these issues. We (...) describe the current screening and safety processes for standard blood donation and explore the importance of donor anonymity and challenges with directed donation and non-standard blood suppliers. We present an ethical framework using the Best Interest Standard, the Zone of Parental Discretion, and the Harm Principle when considering these refusals. Finally, we provide recommendations for how to approach these requests as they potentially become more commonplace in pediatrics. (shrink)

Thirty years ago, Buchanan and Brock distinguished between guidance principles and interference principles in the setting of surrogate decision making on behalf of children and incompetent adult patients. They suggested that the best interest standard could serve as a guidance principle, but was insufficient as an interference principle. In this issue of The Journal of Clinical Ethics, Ross argues that the best interest standard can serve as neither a guidance nor interference principle for decision making on behalf of children, but (...) that her model of constrained parental autonomy can serve as both. I will argue that Buchanan and Brock were correct that a single model or standard cannot serve as both a guidance and interference principle in pediatrics and that the best interest standard is a sufficient guidance principle. The harm principle fulfills the conditions necessary for an interference principle, at least insofar as deciding when state intervention to interfere with parental decision making is justified. (shrink)

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the appropriateness of (...) parental refusal based upon an infant’s projected quality of life. (shrink)

Although there is wide agreement that ethics consults are at risk for conflicts of interest, ethics consultants have limited guidance with regard to how to identify and approach COIs. We aim to address these concerns and provide practical guidance. We will define and consider four categories of COIs: consult type, team composition, dual clinical roles and other concerns. We will define and consider six actions available for ECs to take in response to COIs: no action, disclosure only, obtaining a second (...) opinion, referring to another EC, referring to an institutional ethics committee or seeking an outside consult. We will then propose a points-based algorithm for ECs to use to determine the appropriate response to COI. Finally, we will discuss the strengths and limitations of our proposed algorithm. (shrink)

In the 1960s, human experimentation and public funding of research increased significantly, and with the rise of the modern teaching hospital, the distinction between clinical care and experimentation became more and more blurred. Yet little in the way of meaningful government regulation existed in the United States prior to 1970. In 1966, Paul Freund, the president of the American Academy of Arts and Sciences, appointed an interdisciplinary working group to consult on the issues being raised by human experimentation. Contributions from (...) the group were published in a 1969 issue of Daedalus titled Ethical Aspects of Experimentation with Human Subjects. In the lead essay, Hans Jonas challenged then‐conventional understandings of the moral problems posed by research involving humans and argued for an alternative moral framework. To Jonas, it mattered whether the physician was trying to make the patient well rather than trying to find out how to improve the health of future patients. (shrink)

Programmes serving international patients are increasingly common throughout the USA. These programmes aim to expand access to resources and clinical expertise not readily available in the requesting patients’ home country. However, they exist within the US healthcare system where domestic healthcare needs are unmet for many children. Focusing our analysis on US children’s hospitals that have a societal mandate to provide medical care to a defined geographic population while simultaneously offering highly specialised healthcare services for the general population, we assume (...) that, given their mandate, priority will be given to patients within their catchment area over other patients. We argue that beyond prioritising patients within their region and addressing inequities within US healthcare, US institutions should also provide care to children from countries where access to vital medical services is unavailable or deficient. In the paper, we raise and attempt to answer the following: Do paediatric healthcare institutions have a duty to care for all children in need irrespective of their place of residence, including international patients? If there is such a duty, how should this general duty be balanced against the special duty to serve children within a defined geographical area to which an institution is committed, when resources are strained? Finally, how are institutional obligations manifest in paradigm cases involving international patients? We start with cases, evaluating clinical and contextual features as they inform the strength of ethical claim and priority for access. We then proceed to develop a general prioritisation framework based on them. (shrink)

The case presented here is tragic, not just in the sense of being a sad story, but in the dramatic meaning of tragedy. It presents us with a situation where there is no clear path, where moral ambiguity exists, and where no possible solution could unequivocally be declared the right or good one. Ethical deliberation can help here, but only as a way of clarifying the issues and offering reasonable solutions. It cannot show us the one right way.Baby G has (...) profound medical conditions, including respiratory failure, a chest wall deformity that will require surgery, and profound neurodevelopmental disability. Even a best case scenario portends a shortened lifespan and.. (shrink)

Severe staffing shortages have emerged as a prominent threat to maintaining usual standards of care during the COVID-2019 pandemic. In dire settings of crisis capacity, healthcare systems assume the ethical duty to maximise aggregate population-level benefit of existing resources. To this end, existing plans for rationing mechanical ventilators and intensive care unit beds in crisis capacity focus on selecting individual patients who are most likely to survive and prioritising these patients to receive scarce resources. However, staffing capacity is conceptually different (...) from availability of these types of discrete resources, and the existing strategy of identifying and prioritising patients with the best prognosis cannot be readily adapted to fit this real-world scenario. We propose that two alternative approaches to staffing resource allocation offer a better conceptual fit: prioritise the worst off: restrict access to acute care services and hospital admission for patients at relatively low clinical risk and prioritise staff interventions with high near-term value: universally restrict selected interventions and treatments that require substantial staff time and/or energy but offer minimal near-term patient benefit. These strategies—while potentially resulting in care that deviates from usual standards–support the goal of maximising the aggregate benefit of scarce resources in crisis capacity settings triggered by staffing shortages. This ethical framework offers a foundation to support institutional leaders in developing operationalisable crisis capacity policies that promote fairness and support healthcare workers. (shrink)