Douglas Diekema

University of Washington | UW · Department of Pediatrics

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents’ medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that confl...

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...

Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral...

Learning that one’s child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their chil...

Purposeof review The past 8 decades have seen tremendous medical and technological advancements in the care of children with congenital heart disease (CHD). As with all medical care, there are boundaries of established practices, and at the frontiers of innovation we often encounter ethical challenges. This paper reviews the current ethical challen...

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert sch...

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...

The use of partial code status in pediatric medicine presents clinicians with unique ethical challenges. The clinical vignette describes the presentation of a pulseless infant with a limited life expectancy. The infant's parents instruct the emergency medicine providers to resuscitate but not to intubate. In an emergency, without a clear understand...

Childhood obesity is becoming more prevalent in the United States (U.S.) and worldwide, including among children in need of liver transplant. Unlike with heart and kidney failure, end stage liver disease (ESLD) is unique in that no widely available medical technology can re-create the life-sustaining function a failing liver. Therefore, delaying li...

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...

Importance: The COVID-19 pandemic prompted health care institutions worldwide to develop plans for allocation of scarce resources in crisis capacity settings. These plans frequently rely on rapid deployment of institutional triage teams that would be responsible for prioritizing patients to receive scarce resources; however, little is known about...

Medical pharmaceutical and device manufacturers are essential in making products that benefit patients, and collaboration between health care providers and industry is necessary in the design, testing, and manufacture of these medical products. However, health care providers must recognize that their duties and the interests of industry may, at tim...

Medical pharmaceutical and device manufacturers are essential in making products that benefit patients, and collaboration between health care clinicians and the industry is necessary for the design and manufacture of these medical products. However, health care clinicians must recognize that their duties and the interests of the industry may at tim...

An increasing proportion of transplant centers have implemented a mandate for vaccination against COVID‐19 for solid organ transplant candidates. There has been comparatively little exploration of the ethical considerations of mandating vaccination of a candidate’s primary caregiver, despite a high risk of transmission given the close nature of con...

The inclusion of body mass index (BMI) as a criterion for determining kidney transplant candidacy in children raises clinical and ethical challenges. Childhood obesity is on the rise and common among children with kidney failure. In addition, obesity is reported as an independent risk factor for the development of CKD and kidney failure. Resultantl...

The world continues to face the effects of the SARS-CoV-2 pandemic. COVID-19 vaccines are safe and effective in protecting recipients, decreasing the risk of COVID-19 acquisition, transmission, hospitalization, and death. Transplant recipients may be at greater risk for severe SARS-CoV-2 infection. As a result, transplant programs have begun instit...

Concerns about ethics in the care of children have been central to modern bioethics since its inception over 50 years ago. Key milestones in pediatric bioethics include the controversy over the Willowbrook hepatitis experiments in the 1960s, acknowledgment of the importance of “assent” for children participating in research by the National Commissi...

Objective Plans for allocation of scarce life-sustaining resources during the coronavirus disease 2019 (COVID-19) pandemic often include triage teams, but operational details are lacking, including what patient information is needed to make triage decisions. Methods A Delphi study among Washington state disaster preparedness experts was performed...

Objectives:. Plans for allocating scarce healthcare resources during the COVID-19 pandemic commonly involve the activation of institutional triage teams. These teams would be responsible for selecting patients who are most likely to survive to be prioritized to receive scarce resources. However, there is little empirical support for this approach....

Despite the impact of vaccination on the control and prevention of many infectious diseases, vaccine opposition and hesitancy remain significant barriers to fully protecting individuals and communities against serious disease. The primary response to the problem of vaccine hesitancy includes persuasion and some degree of compulsion, usually in the...

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 “Executive Order on Protecting Vulnerable Newborn and Infant Children” threatens decades of progress in shared decision-making for imperiled newborns.

Healthcare workers have been prioritized for SARS-CoV-2 vaccination, but vaccine hesitancy among workers may limit uptake. Institutions may wish to consider SARS-CoV-2 vaccine mandates for healthcare workers, but such proposals raise important ethical questions. Arguments supporting mandates emphasize the proposed favorable balance of harms and ben...

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...

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...

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...

There is little debate about the importance of ethics in health care, and clearly defined rules, regulations, and oaths help ensure patients’ trust in the care they receive. However, standards are not as well established for the data professions within health care, even though the responsibility to treat patients in an ethical way extends to the da...

Patients pursuing solid organ transplantation are encouraged to receive many vaccines on an accelerated timeline. Vaccination prior to transplantation offers the best chance of developing immunity and may expand the pool of donor organs that candidates can accept without needing post‐transplant therapy. Furthermore, transplant recipients are at gre...

Although there is wide agreement that ethics consults are at risk for conflicts of interest (COIs), ethics consultants (ECs) 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, dua...

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...

Background Inclusion of BMI as criterion in the determination of heart transplant candidacy in children is a clinical and ethical challenge. Childhood obesity is increasing and children with heart disease are not spared. Currently, many adult heart transplant centers consider class II obesity and higher (BMI > 35 kg/m²) to be a relative contraindic...

With a few notable exceptions, adolescents do not possess the legal authority to provide consent for or refuse medical interventions. However, in some situations, the question arises regarding whether a mature minor should be permitted to make a life-altering medical decision that would be challenged if made by the minor's parent. In this article,...

Introduction: Wilderness recreation is increasingly popular among people of all ages. Pediatric providers should have the skills to counsel on risk reduction and respond to medical emergencies in remote settings. However, few physicians receive training in wilderness medicine, and this simulation-based curriculum aims to address that gap. Methods...

The coronavirus disease 2019 pandemic has affected nearly every aspect of medicine and raises numerous moral dilemmas for clinicians. Foremost of these quandaries is how to delineate and implement crisis standards of care and, specifically, how to consider how health care resources should be distributed in times of shortage. We review basic princip...

Background: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies. Objective: To characterize the development of ventilator triage policies and compare policy content. Design: Survey and mixed-methods content analysis. Setting: North American hospi...

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 Fre...

Purpose: Every year, an increasing number of international patients seek medical care in the United States (U.S.), yet little is known about their impact. Based on single institution experiences, we wanted to explore the perceived impact of international pediatric patients on large academic U.S. pediatric intensive care units (PICUs), as they are a...

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 is...

Providing payment to those who participate is common practice for research studies involving both children and adults. While there may be good reasons for providing payment for research participation, there are also reasons to be concerned about the practice, especially when the subjects are children and the payment has the potential to distort par...

Children with severe intellectual disability have historically been excluded from solid organ transplantation. The purpose of this article was to review the arguments for excluding this population, including claims of poorer recipient and graft survival, a lower QoL as pediatric recipients become adults, and poorer outcomes for other, more deservin...

Our aims are to (1) 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; (2) defend this system by appealing to justice principles; and (3) illustrate our proposal by showing how it might be im...

In Reply We appreciate Bester’s comments regarding the complexity of applying the harm principle to cases such as Charlie Gard’s.¹ Specifically, he argues that (1) the harm principle is intended for parental refusals of treatment (in contrast to Charlie Gard’s parents’ request for investigational therapy) and (2) our criticism of the best interest...

Children with intellectual disability were historically excluded from consideration as recipients of solid organ transplants. In light of an evolution in provider practices, this commentary will define intellectual disability and review the relevant provider attitudes and guidelines and known outcomes of solid organ transplant in this population.

Importance Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values....

In July 2017, the case of Charlie Gard received international attention, raising difficult questions about when hospitals and courts should override parental decisions. Charlie Gard was an 11-month-old British infant with infantile-onset mitochondrial DNA depletion syndrome. While his parents and medical team were pursuing options for investigation...

Policies to remove parents’ ability to opt-out from school immunization requirements on the basis of religious or personal beliefs (ie, nonmedical exemptions) may be a useful strategy to increase immunization rates and prevent outbreaks of vaccine-preventable disease. However, there is uncertainty about the effectiveness of this strategy and the ra...

Our goals are to (1) set forth and defend a multiprinciple system for selecting individuals who meet trial eligibility criteria to participate in early phase clinical trials testing chimeric antigen receptor (CAR T-cell) for acute lymphoblastic leukaemia when demand for participation exceeds spaces available in a trial; (2) show the relevance of th...

Aim: Multidisciplinary fetal centers have recently emerged in partnership with children's hospitals throughout the US. The aim of this investigation was to describe the patient experience of pregnant women who were referred to our fetal centers for the evaluation of fetal congenital anomalies. Methods: A qualitative interview study of women refe...

When minors are asked to assist medical educators by acting as standardized patients (SPs), there is a potential for the minors to be exploited. Minors deserve protection from exploitation. Such protection has been written into regulations governing medical research and into child labor laws. But there are no similar guidelines for minors' work in...

We evaluate Peter Adler's challenge to the Centers for Disease Control and Prevention (cdc) draft recommendations on male circumcision (this issue, see pp. 237-262). The CDC advocates elective male circumcision (mc) to improve public health in the usa based on strong scientific evidence. In marked contrast to the cdc, Adler's criticisms depend on s...

Background/aims: In the context of research on medical practices, which includes comparative effectiveness research and pragmatic clinical trials, empirical studies have begun to raise questions about the extent to which institutional review boards' interpretations and applications of research regulations align with patients' values. To better und...

In this chapter we will review existing policies and laws that speak to whether children with neurodevelopmental disabilities can be considered as candidates for solid organ transplant. We will highlight the differences in policy that exist for different organs (heart, liver, kidney). We will review studies of provider attitudes and the published l...

Background Orphans and vulnerable children (OVCs) represent a significant population worldwide, enduring poor health and living conditions. Evidence-based interventions are needed. However, without parents, ethical concerns about including OVCs in research persist. The aim of our study was to better understand the ethical challenges facing research...

This Viewpoint discusses the development of strategies to encourage dialogues between adolescent patients, parents, and health care professionals about sexual and reproductive health preventive services, including long-acting reversible contraception.Long-acting reversible contraceptive (LARC) devices, including intrauterine devices and subdermal c...

Background: Human subjects protection in healthcare contexts rests on the premise that a principled boundary distinguishes clinical research and clinical practice. However, growing use of evidence-based clinical practices by health systems makes it increasingly difficult to disentangle research from a wide range of clinical activities that are som...

We argue that medical decisions on behalf of children should be made with the welfare of the child as the primary interest, that parents should generally be allowed to determine which options optimize the interests of their child, and that those decisions should be formally challenged only when the parental decision places the child at substantial...

In making decisions about allocating scarce organs, undocumented immigrant status should not be used as a proxy for the legitimate criterion of likelihood of success because uncertainty about future ability to pay or insurance coverage applies to almost everyone listed for transplant.

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...

The U.S. Office for Human Research Protections has proposed that end points of randomized trials comparing the effectiveness of standard medical practices are risks of research that would require disclosure and written informed consent, but data are lacking on the views of potential participants. To assess attitudes of U.S. adults about risks and p...

Caring for Ebola Virus Disease (EVD)-affected patients while simultaneously preventing EVD transmission represents a central ethical challenge of the EVD epidemic. To address this challenge, we propose a model policy for "Resuscitation and Emergent Procedure Policy of EVD Patients" and set forth ethical principles that lend support to this policy....

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...

Intensive care unit (ICU) clinicians sometimes have a conscientious objection (CO) to providing or disclosing information about a legal, professionally accepted, and otherwise available medical service. There is little guidance about how to manage COs in ICUs. To provide clinicians, hospital administrators, and policymakers with recommendations for...

This chapter discusses the issue of professional boundaries as seen in the film Waitress (2007). The film tells the story of Jenna (Keri Russell), a small-town waitress trapped in an unhappy marriage, who begins an affair with a new physician Dr. Jim Pomatter (Nathan Fillion). The movie illustrates some clear recommendations for clinicians. Among t...

Introduction Following Hurricane Katrina and the 2009 H1N1 epidemic, pediatric critical care clinicians recognized the urgent need for a standardized pediatric triage/allocation system. This study collected regional provider opinion on issues of care allocation and pediatric triage in a disaster/pandemic setting.Methods This study was a cross-secti...

Objective: Fetal care centers have recently emerged in affiliation with children's hospitals throughout the United States. Few studies have evaluated this new multidisciplinary model of care. Study design: We conducted a survey of multidisciplinary fetal care centers in the United States; survey data was analyzed using descriptive statistics. R...

Purpose Adolescents join clinical research after investigators obtain their positive agreement or “assent.” Although intended to respect adolescents, little is known about the views of adolescents or their parents regarding assent or research enrollment decisions. This study aimed to better understand perspectives of adolescent research participant...

New! Keep up with current practice guidelines and policies with the latest, most up-to-date edition of this clinical reference classic. This evidence-based decision-making tool for managing common pediatric conditions has been revised and updated for 2014, with the latest clinical practice guidelines for more than 30 conditions, plus every AAP poli...

New! Keep up with current practice guidelines and policies with the latest, most up-to-date edition of this clinical reference classic. This evidence-based decision-making tool for managing common pediatric conditions has been revised and updated for 2014, with the latest clinical practice guidelines for more than 30 conditions, plus every AAP poli...

Despite the impact vaccination has had on the control and prevention of many infectious diseases, some parents choose not to vaccinate their children. Although there is no federal law requiring vaccination of children in the United States, all states require evidence of vaccination against at least some diseases as a condition of school entry. Whic...

Some health care providers have adopted the policy of refusing to accept into their practices families who refuse to vaccinate their children according to the standard vaccine schedule. While the frustration that drives these policies is understandable, the practice of refusing to see these families is misguided. Such a strategy does not benefit th...

To the Editor: We are a group of scholars and leaders in bioethics and pediatrics with extensive experience in ethical and regulatory issues in pediatrics and human subjects research. We urge the Office for Human Research Protections (OHRP) to withdraw its notification to the institutions involved in the Surfactant, Positive Pressure, and Oxygenati...

Abstract Social media Websites (SMWs) are increasingly popular research tools. These sites provide new opportunities for researchers, but raise new challenges for Institutional Review Boards (IRBs) that review these research protocols. As of yet, there is little-to-no guidance regarding how an IRB should review the studies involving SMWs. The purpo...

Keep up with current practice guidelines and policies with the latest, most up-to-date edition of this clinical reference classic. This evidence-based decision-making tool for managing common pediatric conditions has been revised and updated for 2013, with the latest clinical practice guidelines for more than 30 conditions, plus every AAP policy st...

Keep up with current practice guidelines and policies with the latest, most up-to-date edition of this clinical reference classic. This evidence-based decision-making tool for managing common pediatric conditions has been revised and updated for 2013, with the latest clinical practice guidelines for more than 30 conditions, plus every AAP policy st...

Risk is implicit in all clinical decision-making. Whether a clinician refrains from ordering a head computed tomography scan for a patient with a headache or decides to obtain blood work on a child with a fever, each decision involves a balance between accepting and limiting risk. Ideally, clinicians strive to achieve this balance. Clinicians accep...

The members of the American Academy of Pediatrics (AAP) Task Force on Circumcision appreciate the opportunity to respond to the concerns raised by Frisch et al in their commentary, “Cultural Bias in AAP’s 2012 Technical Report and Policy Statement on Male Circumcision.” The central claim of these authors is that the conclusions of the task force r...

Male circumcision consists of the surgical removal of some, or all, of the foreskin (or prepuce) from the penis. It is one of the most common procedures in the world. In the United States, the procedure is commonly performed during the newborn period. In 2007, the American Academy of Pediatrics (AAP) convened a multidisciplinary workgroup of AAP me...

Male circumcision is a common procedure, generally performed during the newborn period in the United States. In 2007, the American Academy of Pediatrics (AAP) formed a multidisciplinary task force of AAP members and other stakeholders to evaluate the recent evidence on male circumcision and update the Academy’s 1999 recommendations in this area. Ev...

This section will address the issue of female genital cutting, often referred to as female circumcision or genital mutilation. This section will describe the forms of female genital cutting, where it is practiced, the role of culture and beliefs about gender roles associated with the practice, efforts to restrict or eliminate the practice, and end...