John D. Lantos's research while affiliated with University of Missouri - Kansas City and other places
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Publications (107)
When Bird, the twenty-seven-year-old first-time father in Kenzaburo Oe’s novel A Personal Matter, learns that his newborn son has a brain anomaly, his first reaction is to wonder whether the baby is suffering.
The goal of neonatal bioethics is to help clinicians navigate difficult decisions that arise every day in the care of critically ill newborns. Over the last few decades, there have been vigorous discussions of numerous ethical issues. For some, we have worked out a tentative societal agreement for appropriate responses. Others remain contentious an...
Debates about treatment for the tiniest premature babies focus on three different approaches – universal non-resuscitation, selective resuscitation, and universal resuscitation. Doctors, hospitals, and professional societies differ on which approach is preferable. The debate is evolving as more and more studies show that survival rates for babies b...
These two cases illustrate a number of crucial features about the ethical dilemmas that arise in the NICU. They highlight the ways in which ethical dilemmas for newborns are similar in some ways and different in other ways from ethical dilemmas in other clinical settings. In discussing these cases, I will try to highlight the features that ought to...
Survival rates for babies born at 22 weeks of gestation are steadily improving at centers that offer active treatment to these babies. Still, many centers do not offer such treatment or, if they do, actively discourage it. Thus, parents will be given very different advice at different centers for babies born at the borderline of viability. Those do...
Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering active treatment reflect concerns about survival rates, rates of neurodevelopmental impairment and cost....
A primary goal of our medical education system is to produce physicians qualified to promote health, prevent and treat disease, and relieve suffering. Although some aspects of the practice of medicine can be learned in classrooms, from textbooks, or with simulators, other aspects can only be learned through the direct provision of patient care. Res...
The current coronavirus disease 2019 (COVID-19) pandemic has triggered an intense global research effort to inform the life-saving work of frontline clinicians who need reliable information as soon as possible. Yet research done in pressured circumstances can lead to ethical dilemmas, especially for vulnerable research subjects. We present the case...
In order to evaluate physicians’ willingness to seek legal action to mandate surgery when parents refuse surgery for various congenital heart lesions, we surveyed pediatric cardiologists and cardiovascular surgeons at 4 children’s hospitals. We asked whether physicians would support parental refusal of surgery for specific heart defects and, if not...
With increasing focus in the last decade on post–cardiac arrest care in pediatrics, return of spontaneous circulation, survival rates, and neurologic outcome have improved. As part of this postarrest care, both the American Heart Association and the American Academy of Neurology state it is reasonable to consider targeted temperature management in...
It is not uncommon for pediatric neurologists to encounter ethical dilemmas in clinical practice. These dilemmas not only require an exploration of the basic bioethical principles, but also considering that neurological disease can have impact on a person's self-identity. Patients with neurological disease are particularly vulnerable and at risk of...
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 chil...
Clinicians in the United States today regularly face dilemmas about health disparities. Many patients and families cannot afford the medical care that doctors recommend. These problems are most stark when the medical care that is needed is lifesaving and expensive and involves scarce resources. Transplants are the best example of this. The most eth...
To control the spread of severe acute respiratory syndrome coronavirus 2, the virus responsible for coronavirus disease 2019, many hospitals have strict visitor restriction policies. These policies often prohibit both parents from visiting at the same time or having grandparents or other family members visit at all. We discuss cases in which such p...
A 15-year-old girl is scheduled to undergo an upper lobectomy to debulk metastatic Ewing sarcoma. The anesthesiologist recommended placement of a thoracic epidural catheter to provide postoperative analgesia. The patient did not want a needle to be placed near her spine. She was terrified that the procedure would be painful and that it might paraly...
The pandemic creates unprecedented challenges to society and to health care systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems in health care and deflected a...
The Coronavirus Disease 2019 (COVID‐19) outbreak raises unique ethical dilemmas because it makes demands on society from all sectors of life, nationally and across the globe. Health professionals must deal with decisions about the allocation of scarce resources that can eventually cause moral distress and may affects one’s mental health. Everybody...
Multiple births are increasing in frequency related to advanced maternal age and fertility treatments, and they have an increased risk for congenital anomalies compared to singleton births. However, twins have the same congenital anomalies <15% of the time. Thus, having multiple births with discordant anomalies is a growing challenge for neonatolog...
Nearly 20 years ago, health economist Henry Aaron characterized the US health care system as “an administrative monstrosity, a truly bizarre mélange of thousands of payers with payment systems that differ for no socially beneficial reason, as well as staggeringly complex public systems with mind-boggling administered prices and other rules expressi...
Medical decision-making in children is not a static process. In pediatrics, parents and health professionals actively participate in clinical decision-making. They always consider what is in the child's best interest and sometimes weigh that against other considerations. As children get older, the level of participation in this process may change a...
Objectives:
To compare parental attitudes about short stature over time and determine possible factors that predict changes in attitudes.
Study design:
At baseline (1993-1994), we surveyed parents about their attitudes regarding their children's height. We compared parents of children (aged 4-15 years) referred to endocrinologists (referred, 154...
Many transgender and gender-diverse people have a gender identity that does not conform to the binary categories of male or female; they have a nonbinary gender. Some nonbinary individuals are most comfortable with an androgynous gender expression. For those who have not yet fully progressed through puberty, puberty suppression with gonadotrophin-r...
Mental health disorders in adolescents present some of the most challenging of all ethical dilemmas. This is particularly true when they lead to self-injurious behavior that can only be prevented by either limiting the freedom of the adolescent or forcing treatments on them that they do not want. Intentional and repeated foreign-body ingestion (FBI...
We present the case of a 2-year-old boy with epidermolysis bullosa and supraglottic stenosis whose parents refuse an elective tracheostomy because of the significant care the tracheostomy would require. The patient's family lives in a rural area with few health care resources and his parents are already handling hours of daily skin care for his epi...
Social media pervades all aspects of our lives. In medicine, it has changed the ways that patients and parents get health information, advocate for particular treatments for themselves and their children, and raise money for expensive treatments. In this Ethics Rounds, we present a case in which the use of social media seemed to cross the boundarie...
In this paper, we examine healthcare organizations’ responses to high profile cases of doctor–parent disagreement. We argue that, once a conflict crosses a certain threshold of public interest, the stakes of the disagreement change in important ways. They are no longer only the stakes of the child’s interests or who has decision‐making authority, b...
Objective:
The Management of Myelomeningocele Study (MOMS) compared prenatal with postnatal surgery for myelomeningocele (MMC). The present study sought to determine how MOMS influenced the clinical recommendations of pediatric neurosurgeons, how surgeons' risk tolerance affected their views, how their views compare to those of their colleagues in...
Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors' recommendations? Which treatments...
There is very little law-either case law or statutory law - that regulates delivery room decisions about resuscitation of critically ill newborns. Most of the case law that exists is decades old. Thus, physicians cannot look to the law for much guidance about what is permissible or prohibited. Local hospital policies and professional society statem...
A 530-g girl born at 22 weeks and 6 days' gestation (determined by an ultrasound at 11 weeks) was admitted to the NICU. Her mother had received prenatal steroids. At 12 hours of age, she was stable on low ventilator settings. Her blood pressure was fine. Her urine output was good. After counseling, her parents voiced understanding of the risks and...
Critically ill newborns receiving intensive and complex care may be subject to medical errors and adverse events. Like most physicians, neonatologists do not feel comfortable disclosing their errors and may need assistance in learning how to do so. Understanding useful models of error disclosure, and communication training, will likely be beneficia...
Over the past decade, there have been numerous cases around the world in which parents have used digital media to orchestrate public opposition to doctors' recommendations. Parents are not always "successful" with such efforts; these cases have mixed outcomes and, sometimes, unintended consequences for parents. In this article, we address the curre...
We present the case of a girl aged 17 years and 10 months who has a strong family history of long QT syndrome and genetic testing confirming the diagnosis of long QT syndrome in the patient also. She was initially medically treated with β-blocker therapy; however, after suffering 1 episode of syncope during exertion, she underwent placement of an i...
One of the most common dilemmas faced by physicians and genetic counselors is the discovery of misattributed paternity. In this article, we present a case in which misattributed paternity was discovered as an incidental finding. Experts analyze the competing moral obligations that might dictate disclosure or nondisclosure.
This collection is intended to be a starting point for a discussion on pediatric bioethics and a reference when reflecting on similar cases.
https://shop.aap.org/pediatric-collections-ethics-rounds-a-casebook-in-pediatric-bioethics-paperback/
This collection is intended to be a starting point for a discussion on pediatric bioethics and a reference when reflecting on similar cases.
https://shop.aap.org/pediatric-collections-ethics-rounds-a-casebook-in-pediatric-bioethics-paperback/
Early‐infantile Krabbe disease (EIKD) is an autosomal recessive, progressive, neurodegenerative disorder that usually leads to death in infancy. A study published in 2005 indicated that hematopoietic stem‐cell transplantation (HSCT) was effective in the treatment for EIKD when used before the onset of symptoms. This finding suggested that newborn s...
We present a case in which a fetal diagnosis of complex congenital heart disease and trisomy 18 led to a series of decisions for an infant who was critically ill. The parents wanted everything done. The surgeons believed that surgery would be futile. The parents publicized the case on social media, which led to publicity and pressure on the hospita...
In this issue of JAMA Pediatrics, Brumbaugh et al¹ show that infants born weighing less than 400 g can survive. In this study, when such infants were admitted to neonatal intensive care units (NICUs) and actively treated, 26% survived to discharge. Survival for infants who were born at 24 weeks’ gestational age or older was nearly twice as high (32...
Much distress may be felt within the PICU setting regarding the impression that “futile,” or “inappropriate” care is being provided. While a clear definition of futility remains elusive in the medical community, efforts have been made by critical care societies to differentiate between appropriate therapeutic options from potentially inappropriate...
Allocation of resources is frequently thought to be an issue in third world countries who may regularly struggle with limited resources. Resource allocation, however, may be frequently encountered within critical care units. The seemingly simple struggle with limited beds or limited medication supply can regularly require providers to make allocati...
More and more children are surviving through PICU discharge. But discharge may be following a prolonged hospital course, and they may leave with a new slew of medical conditions, sometimes including dependence upon medical technology. This is the pediatric chronically critically ill child. While a definition of pediatric chronic critical illness (P...
Moral distress is ubiquitous in PICU settings, impacting team members from all different disciplines. Distress arises from the critical nature of the patient’s illness, with many children facing either death or living with life-long disability. Values used for decision making vary widely among patients’ families and multiple team members, leading t...
Communication with parents about end-of-life decisions is one of the most challenging but crucial aspects of a pediatric intensivist’s role. Making decisions for dying patients was physically, emotionally and morally easier when patients were less complex and less dependent upon technology, and when physicians felt justified in making unilateral de...
Parents need certainty that, when their child is declared dead, there has not been any mistake. As discussed within this chapter, the fear of death being declared prematurely is inherent to human nature. However, the complexities of modern medicine have made the concept of death and when it occurs even more complex. The chapter reviews the history...
The fundamental question in the debate about germline gene editing (GLGE) is whether we should accept that there will always be some babies will be born with genetic diseases or whether we should to try to eliminate those diseases. The flipside question is whether the desire to tinker with the world is itself pathological and likely to make us wors...
When caring for patients and families who do not speak English, medical interpreters are necessary. Sometimes, our patients' families speak languages or dialects for which no in-person or video or phone interpreter can be found. If a family member is bilingual, the members of the medical team must make a difficult choice. Is it better to use a fami...
Clinical ethics consultation service remains undeveloped in developing countries. It is recognised that its introduction poses challenges. Malaysia, a multicultural society with diverse religions, values and perceptions further complicate the introduction of formal clinical ethics consultation service. Clinicians attending a national congress works...
DNA is now commonly collected in clinical research either for immediate genomic analyses or stored for future studies. Many genomic studies were previously designed without awareness of the ethical issues that might arise regarding the disclosure of genomic test results. At the start of the Chronic Kidney Disease in Children (CKiD) Cohort Study in...
In this article, we first review the development of clinical ethics in pediatrics in the United States. We report that, over the last 40 years, most children's hospitals have ethics committees but that those committees are rarely consulted. We speculate that the reasons for the paucity of ethics consults might be because ethical dilemmas are aired...
Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument r...
US regulations allow institutional review boards to approve pediatric clinical trials only when the risks are minimal or (in some cases) a minor increase over minimal, or when the risks are justified by a potential for direct benefit to the participants. But how should an institutional review board determine if the risks of pediatric clinical trial...
Ethical controversies may arise when genome sequencing reveals a genetic variant that is thought to be pathogenic, but the patient has no symptoms. This could be due to variable penetrance or expressivity. It could also result from a misclassification of the gene as pathogenic. In this article, I analyze 2 possibilities when such a situation occurs...
Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing testing became available, and another focus group took place 3 years later. Focus groups were audiotaped...
The chapter briefly summarizes the greater concepts within the book.
This essay analyzes the conflicts that arise between an individual's deeply held beliefs and the collective norms of society. Sometimes these conflicts are framed in religious terms. The author argues that such a framing is too narrow and inappropriately puts the focus on a specific set of (largely Christian) beliefs about matters related to sexual...
Organ donation and transplantation is an important component of pediatric critical care. In the United States, over 100 children die annually while listed for organ transplantation, while others are too sick to be listed. The pediatric intensivist strives to ensure one of her patients is not among those, through both excellent clinical care and thr...
This chapter defines the scope of pediatric critical illness. To understand the impact of ethical dilemmas among our patients, it is necessary to describe the patients being affected. Death among children has changed from a common reality, to a rare event. Within the United States, the mortality rate among children fell from 100 in 1000 births in 1...
In this article, I review some of the ethical issues that have arisen in the past when genetic testing has been done in newborns. I then suggest how whole genome sequencing may raise a new set of issues. Finally, I introduce a series of other articles in which the authors address different controversies that arise when whole genome sequencing is us...
The history of pediatric critical care is laid out within this chapter. It demonstrates how the development of medicine for critically ill infants and children has been advanced by those who were willing to push boundaries. Critical care required the development of medical technology that some questioned as being cruel and certainly experimental. O...
We present the case of a 19-month-old boy with complex congenital heart disease. His single father is skeptical of traditional medicine and does not offer the social support needed to make heart transplantation successful for his son. After the father demonstrates commitment to transplant success and provides enhanced social support, doctors place...
When a child needs surgery, both the surgeon and the anesthesiologist must obtain informed consent from the parents. In theory, each specialist obtains permission for their respective portion of the procedure, with the anesthesiologist only obtaining informed consent for the administration of anesthesia and management in the operating room and reco...
The articles included in this collection on bullying provide a wide lens through which to view this complexity.
Most critical care interventions for children occur in the framework of a supportive environment with loving parents that are present at the bedside to help to guide medical interventions through shared decision-making. What happens, however, if the parents are precluded from being at the bedside because of legal entanglements? How should clinical...
Technological advances have altered the boundary between viable and nonviable newborns and increased the need to consider quality of life in intervention decisions. An approach to decision making that accounts for the complexity of family and physician values is described.
In Ethics and Research with Children, authors present and discuss challenging cases in the field of pediatric research ethics. This 2nd Edition includes a revised and updated introduction along with 13 completely new chapters with compelling cases, analysis and questions for discussion. After years of debate and controversy, fundamental questions a...
This article draws on fiction, poetry, and memoir to suggest that for many people, tragic choices are best dealt with not through explicit conversations that directly confront difficult truths but, instead, through indirect and ambiguous conversations that only suggest what is most important. Telling the truth slant is not easier than telling it di...
An infant with complex congenital heart disease suffers a prolonged cardiac arrest with minutes of anoxia. He is left with severe brain damage and profound neurologic impairment. He no longer responds to caregivers. Much of the time, he cries and grimaces as if in pain. He has required increasing sedation to control these symptoms. His parents live...
Many foreign parents bring their children to the United States for medical treatments that are unavailable in their own country. Often, however, parents cannot afford expensive treatments. Doctors and hospitals then face a dilemma. Is it ethically permissible to consider the patient's citizenship and ability to pay? In this Ethics Rounds, we presen...
The expansion of growth hormone therapy over the last 3 decades has allowed for treatment of short stature for more children, resulting in increased height for many. However, treatment of idiopathic short stature remains controversial. Treatment decisions for disabled children with idiopathic short stature are even more complicated. We discuss a sp...
The Food and Drug Administration categorizes marijuana (cannabis) as a Schedule I drug, meaning that it has no currently accepted medical use, a high potential for abuse, and no good data on safety. Other Schedule I drugs are heroin, lysergic acid diethylamide, peyote, methaqualone, and 3,4-methylenedioxymethamphetamine ("ecstasy"). The authors of...
In Reply Marshall and O’Leary’s thoughtful response to our article¹ suggests that dismissal policies are ethically justifiable because they might induce parents to immunize their children. This outcome is conceivable, but we have only anecdotes about how often it occurs. Such evidence became the thin reed on which the American Academy of Pediatrics...
All of us (doctors, parents, bioethicists, and health policy makers) think differently about premature infants who require neonatal intensive care than we do about other patients who are critically ill. In most other clinical circumstances, those that involve patients other than premature infants, our first impulse when confronted with a patient in...
A 20-week-old fetus was diagnosed with critical pulmonary valve stenosis. Given the ultrasound findings, the outcome was difficult to predict. The fetal cardiologists discussed the possibility of a pulmonary valvuloplasty (an experimental procedure) with the parents, wherein the fetal right ventricle would be punctured with a long 18G needle, and t...
In this article, we discuss a case in which a 16-year-old birth-assigned male came out to her parents as transgender. She is referred to the gender management program at a large pediatric academic center to discuss hormone therapy. She was initially evaluated by a psychiatrist, diagnosed with gender dysphoria and anxiety, and treated with medicatio...
Abstract
In this article, we discuss a case in which a 16-year-old birth-assigned male came out to her parents as transgender. She is referred to the gender management program at a large pediatric academic center to discuss hormone therapy. She was initially evaluated by a psychiatrist, diagnosed with gender dysphoria and anxiety, and treated with...
Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐di...
Generally, wide latitude is granted to parents when making decisions for their child on the basis of the wide acceptance of the special relationship between parent and child and the important role played by parents in the lives of children. However, when high-risk decisions are made, health care teams serve as an important societal safeguard that q...
Citations
... Special attention was paid to ethical issues at all stages of the study (e.g., Kodish, 2005). The study followed the procedures of ethically sustainable research manifested in the principles of the Finnish National Advisory Board of Research Ethics. ...
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... As Lantos puts is, is there anything rational with letting your baby die? (Lantos 2022). We do not have all the answers, but we will insist that our approach is less harmful than merely letting the technological imperative govern. ...
... The NICU is a high-tech and stressful setting in which "decisions regarding end-of-life care, periviable resuscitation, and medical futility are common" [9]. Neonatologists must make difficult ethical decisions in the context of caring for critically ill infants [10]. Indeed, in the context of the NICU, ethical challenges are frequently raised, which at times becomes tragic, especially with regard to providing care for infants who are born at the limit of viability (weeks 22-25 of gestation). ...
... In his editorial, Lantos incorrectly claimed poor protocol adherence because many eligible patients were not enrolled. 1 Project Baby Bear (PBB) was a quality improvement project implementing rapid whole genome sequencing (rWGS) in Medicaid infants in 5 California hospitals. 2 Funding allowed enrollment of 184 infants. ...
... Resuscitation at birth of EPIs is an ethically sensitive decision. Because of this complex interplay of factors, determining the specific chances of survival with good outcomes of each individual infant can be difficult (9,10). Such clinical uncertainty inevitably raises ethical questions. ...
... It is vital to understand the link between social media activity and influenza vaccination, as well as other vaccines, such as those against COVID-19 . New upgrades for the era of COVID-19 and globalized infectious diseases, as well as how to promote COVID-19 immunization on social media (Puri, Coomes, Haghbayan, & Gunaratne, 2020;Raza & Lantos, 2021). ...
... Dominic Wilkinson 1,2,3 In their three thoughtful commentaries on my essay, Prentice, Mahoney and Moore and Lantos reflect on the challenges that I set out: can we make sense of the notion of a good death, and can we use art and music to provide any insights into it? [1][2][3] I was thinking about these questions again while reading this week of yet another UK legal dispute relating to life-sustaining treatment for a child. ...
Reference: Dissonance and consonance about death
... The assessment of risk and benefit was found to be of particular concern for disabled people to clinical trial participation. Factors that increased the perceived risk to benefit ratio were barriers and included increased vulnerability to complications and side effects for certain disabilities [15][16][17][18][19], worries about unfair treatment impacting wellbeing [20][21][22][23][24][25], and low expectations of therapeutic benefit [26,27]. Factors that decreased the perceived risk to benefit ratio were facilitators and included provisions of additional protections informed by a needs analysis [28] and open communication strategies to clarify and reassure [24,27,29]. ...
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... Finally, John Lantos offers a commentary on the preceding three papers and presents his own analysis of the case of baby Esther [20]. To that end, Lantos explores the complex psychology of Bird, the semi-autobiographical character from Kenzaburo Oe's novel A Personal Matter [21]. ...
... Long before COVID-19 occurred, bioethical debates surrounding the use of age and age-related standards for allocating scarce healthcare resources date to the 1980s, when there was a growing recognition of the implications of rapid population aging on healthcare utilization [18]. In general, the metabolic rate and recovery ability of elderly patients is certainly lower than that of younger patients. ...
