Neonatal & NICU Ethics

Why the Dutch Keep Pediatric Euthanasia Illegal

Eduard Verhagen

Pediatric euthanasia in The Netherlands has a unique legal status - it is illegal, openly practiced, and well-regulated. The most surprising part isn't the law that enabled this — it's what happened after.

The Tiniest Patients: Rethinking How We Decide

	When a baby is born at 22 or 23 weeks of pregnancy — half the normal gestational period — doctors and parents face one of the most agonizing decisions in all of medicine. Should they fight to keep the baby alive, knowing survival is u

When facts are not fixed: rethinking shared decision making at the margins of neonatal viability.

Parents and doctors face difficult decisions when a baby is born at the borderline of viability. Somehow, they must voice their values, shared concerns, and disagreements in a way that allows an initial decision about life-sustaining…

Survival After Court-Ordered Treatment Withdrawal

NR (as he is named in UK court documents) was born in 2020 with a malformed brain. He had, callosal agenesis, cortical dysgyria, dysplastic basal ganglia, a cleft lip and palate, and anopththalmia (no eyeballs). He was not expected to survi

Is the West the Best?

Neonatal intensive care units (NICUs) in different countries take different approaches to decisions about forgoing life sustaining treatment. These differences partly reflect decisions about resource allocation and the ways that babies’ liv

Trashing genomics

Katherine Callahan, a neonatologist and bioethicist, offers a poignant warning about the dangers of new diagnostic genomic tests. She begins with a scene that will be familiar to most clinicians, a family conference. The room is crowded.

When families disagree with experts

I wrote last week about the deliberations at an FDA Advisory Committee meeting about an innovative gene therapy treatment for Duchenne Muscular Dystrophy. I highlighted the disconnect between the comments made by parents and patients, who

Sister Senators and South Carolina Supremes

Last week, I wrote about the Republican women who stopped a life-begins-at-conception ban on abortions in South Carolina. They have been consistently stopping the passage of that bill, a bill that already passed the SC House, by filibuste

Who's Afraid of Ectogenesis?

		The idea of “ectogenesis” – growing babies outside the womb - has fired imaginations for over a century. In 1923, biochemist JBS Haldane coined the term ectogenesis. He imagined that it could save civilization from an impending

The false-negative phenotype

genomic testing creates the possibility of a false-negative phenotype

The Future of Newborn Genomic Testing

Genome sequencing (GS) provides exciting opportunities to rapidly identify a diagnosis in critically ill newborns and children with rare genetic conditions. Nevertheless, there are reasons to remain cautious about the use of GS. Studies to…

The Future of Newborn Genomic Screening

GS provides exciting opportunities to rapidly identify a diagnosis in critically ill newborns and children with rare genetic conditions. But there are good reasons to remain cautious about the broad implementation of these strategies in…

The Future of Newborn Genomic Testing.

Genome sequencing (GS) provides exciting opportunities to rapidly identify a diagnosis in critically ill newborns and children with rare genetic conditions. Nevertheless, there are reasons to remain cautious about the use of GS. Studies to…

Protecting children from ignorance

The FDA has issued a new draft guidance regarding research in children. An accompanying press release states that we must protect children inadequately studied drugs and devices. To do so, we need to study those innovations in the children

Teach us to outgrow guidelines

In 1998, Norway, like many countries, adopted a national policy to guide decisions about life-sustaining treatment for extremely premature infants. That policy recommended against treatment for babies born before 23 weeks of gestational age

When to let babies die

When is a premature baby so premature that we should consider them non-viable? When we do not intubate them and provide intensive care. Instead, we inform the parents that nothing can be done and provide excellent palliative care to help t

How many deaths will it take till we know?

Experts estimate that a ban on abortion will lead to 140 deaths/year among pregnant women in the United States. Obstetricians will have to make tough decisions about whether to follow these laws and watch their patients die or violate the

Genome sequencing for all babies? We are not there yet!

For decades, leading scientists have predicted that soon, very soon, genome sequencing (GS) of all newborn babies will allow diagnosis and treatment of rare diseases. We are not there yet. I recently explained some of the problems in an

Saving premature babies and abortion rights.

Here's a question that may seem weird: Should we let premature babies die to preserve abortion rights? 
The New York Times thinks so. It reviewed an article showing improved survival rates for babies born at 22 weeks. (https://www.nej

What’s in a name? The ethical implications and opportunities in diagnosing an infant with neonatal abstinence syndrome (NAS)

Ju Lee Oei, et al.

Neonatal abstinence syndrome (NAS) is a condition mired in stigma. Diagnostic efforts focus upon the needs of the mother and the clinicians and may sideline and neglect the infant. This results in ‘reflected stigma’ where patients do not…

Trauma-informed care and ethics consultation in the NICU.

Hubbard DK, et al.

Trauma-informed care responds to our current understanding of the ways in which people's traumatic life experiences influence both their health and their interactions with the health care system. Many ethics consults arise because those…

Ethical implications of the shifting borderline of viability.

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…

Cardiac Interventions for Patients With Trisomy 13 and Trisomy 18: Experience, Ethical Issues, Communication, and the Case for Individualized Family-Centered Care

John P. Cleary, et al.

This report is informed by the themes of the session Trisomy 13/18, Exploring the Changing Landscape of Interventions at NeoHeart 2020—The Fifth International Conference of the Neonatal Heart Society. The faculty reviewed the present…

Ethical implications of the shifting borderline of viability

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…

Trauma-informed care and ethics consultation in the NICU

Dena Hubbard, et al.

Trauma-informed care responds to our current understanding of the ways in which people's traumatic life experiences influence both their health and their interactions with the health care system. Many ethics consults arise because those…

Helping Parents Cope in the NICU

Marlyse F. Haward, et al.

Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The…

Should Extremely Premature Babies Get Ventilators During the COVID-19 Crisis?

Marlyse F. Haward, et al.

In a crisis, societal needs take precedence over a patient's best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has…

Communicating with parents of children with trisomy 13 or 18 who seek cardiac interventions

Meaghann S. Weaver, et al.

This case report shares the story of a family who sought care elsewhere after their daughter was denied cardiac surgery in their home state because she had trisomy 18. This case report recommends case-by-case assessment of cardiac surgical…

Neonatologists' Attitudes About Diagnostic Whole-Genome Sequencing in the NICU.

Knapp B, Decker C

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…

Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome

Stephanie Kukora, et al.

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…

Parents of newborns in the NICU enrolled in genome sequencing research: hopeful, but not naïve

Courtney Berrios, et al.

PURPOSE: In 2014, our institution launched a randomized controlled trial (RCT) comparing rapid genome sequencing (GS) to standard clinical evaluations of infants with suspected genetic disorders. This study aimed to understand parental…

Neonatologists’ Attitudes About Diagnostic Whole-Genome Sequencing in the NICU

Brett Knapp, Carole Decker

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…

Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome.

Kukora S, et al.

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…

Ethics, Data, and Policy in Newborn Intensive Care

William Meadow

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Fragile lives with fragile rights: Justice for babies born at the limit of viability

Manya J. Hendriks

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be…

Fragile lives with fragile rights: Justice for babies born at the limit of viability.

Hendriks MJ

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be…

What We Do When We Resuscitate Extremely Preterm Infants.

Garrett JR, Carter BS

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Newborn Sequencing in Genomic Medicine and Public Health

Jonathan S. Berg, et al.

The rapid development of genomic sequencing technologies has decreased the cost of genetic analysis to the extent that it seems plausible that genome-scale sequencing could have widespread availability in pediatric care. Genomic sequencing…

What We Do When We Resuscitate Extremely Preterm Infants

Jeremy R. Garrett, Brian S. Carter

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Treatment Decisions for Babies with Trisomy 13 and 18.

Pallotto I

Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining…

Treatment Decisions for Babies with Trisomy 13 and 18

Isabella K. Pallotto

Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining…

Trisomy 13 and 18—Treatment Decisions in a Stable Gray Zone

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Delivery room practices for extremely preterm infants: the harms of the gestational age label

Annie Janvier

Interventions for extremely preterm infants bring up many ethical questions. To answer these questions, data are needed. The investigators of the Epipage-2 study have conducted a rigorous investigation: they report outcomes for all 2145…

Bartleby in the NICU.

The doctors were frustrated. They could see only two options. Neither was very desirable. They could stop the ventilator and let the baby die. Or they could do a tracheostomy and start preparations to discharge him on a ventilator. The…

Bartleby in the NICU

The doctors were frustrated. They could see only two options. Neither was very desirable. They could stop the ventilator and let the baby die. Or they could do a tracheostomy and start preparations to discharge him on a ventilator. The…

Tough Decisions for Premature Triplets

Ashley Hurst, et al.

When infants are born at the borderline of viability, doctors and parents have to make tough decisions about whether to institute intensive care or provide only palliative care. Often, these decisions are made in moments of profound…

Trisomy 13 and 18--Treatment Decisions in a Stable Gray Zone.

Our website uses cookies to enhance your experience. By continuing to use our site, or clicking "Continue," you are agreeing to our Cookie Policy | Continue JAMA HomeNew OnlineCurrent IssueFor Authors Podcasts Clinical Reviews Editors'…

Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents

Annie Janvier, et al.

For parents, the experience of having an infant in the NICU is often psychologically traumatic. No parent can be fully prepared for the extreme stress and range of emotions of caring for a critically ill newborn. As health care providers…

Islamic American doctors and premature babies.

Khmour A

Two daunting methodological difficulties arise when we try to study the influence of doctors' religious beliefs on their clinical practices. First, religious beliefs are a private matter. We don't know what goes on in people's hearts.…

Parental Refusal of Surgery in an Infant With Tricuspid Atresia.

Kon AA, et al.

We present a case of a fetal diagnosis of tricuspid atresia (TA). The pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold…

Tough Decisions for Premature Triplets.

Hurst A, et al.

When infants are born at the borderline of viability, doctors and parents have to make tough decisions about whether to institute intensive care or provide only palliative care. Often, these decisions are made in moments of profound…

Islamic American doctors and premature babies

Ayman Khmour

Two daunting methodological difficulties arise when we try to study the influence of doctors' religious beliefs on their clinical practices. First, religious beliefs are a private matter. We don't know what goes on in people's hearts.…

Parental Refusal of Surgery in an Infant With Tricuspid Atresia

Alexander A. Kon, et al.

We present a case of a fetal diagnosis of tricuspid atresia (TA). The pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold…

SUPPORT and the Ethics of Study Implementation: Lessons for Comparative Effectiveness Research from the Trial of Oxygen Therapy for Premature Babies.

Feudtner C

The design of SUPPORT has been widely misunderstood. This confusion has driven much of the debate about the trial - and threatens the whole enterpise of comparative effectiveness

CPS position statement for prenatal counselling before a premature birth: Simple rules for complicated decisions

Annie Janvier, et al.

Pediatrics, Neonatologist, Director of Pediatrics, University Medical Center Groningen, Groningen, NetherlandsCorrespondence: Dr Keith J Barrington, Pediatrics, Universite de Montreal, 3175 chemin Cote-Sainte-Catherine, Montreal, Quebec…

Infants of borderline viability: The ethics of delivery room care

Jessica Brunkhorst, Julie Weiner

For more than half a century neonatologists and ethicists alike have struggled with ethical dilemmas surrounding infants born at the limits of viability. Both doctors and parents face difficult decisions. Do we try to save these babies,…

SUPPORT and the Ethics of Study Implementation: <i>Lessons for Comparative Effectiveness Research from the Trial of Oxygen Therapy for Premature Babies</i>

Chris Feudtner

The design of SUPPORT has been widely misunderstood. This confusion has driven much of the debate about the trial - and threatens the whole enterpise of comparative effectiveness

Lessons that newborn screening in the USA can teach us about biobanking and large-scale genetic studies.

Tarini BA

The intent in establishing newborn screening programs was not to create and sustain a large-scale genetic biobanks. Instead, newborn screening programs were designed as a public health program. As such, they have successfully screened…

The evolving ethics of infant dialysis.

Warady BA

In this paper, we review ethical issues that arise when families and doctors face clinical decisions about renal replacement therapy for an infant with end-stage renal disease (ESRD). Over the last 20 years, many centers have begun to…

SUPPORTing Premature Infants

The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) tried to determine the safest dose of oxygen for premature infants. The federal Office for Human Research Protections (OHRP) determined that the consent process…

Medically induced preterm birth and the associations between prenatal care and infant mortality

Tyler J. VanderWeele, Diane S. Lauderdale

PURPOSE: During the last 30 years, the use of prenatal care, both the proportion of women receiving the recommended number of visits and the average number of visits, has increased substantially. Although infant mortality has decreased,…

Is Treatment Futile for an Extremely Premature Infant With Giant Omphalocele?

Dalia M. Feltman, et al.

Doctors have no ethical obligation to provide futile treatment. This has been true since the time of Hippocrates who warned physicians not to treat patients who were "overmastered by their disease." This principle remains valid today but,…

SUPPORTing premature infants.

The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) tried to determine the safest dose of oxygen for premature infants. The federal Office for Human Research Protections (OHRP) determined that the consent process…

Medically induced preterm birth and the associations between prenatal care and infant mortality.

VanderWeele TJ, Lauderdale DS

PURPOSE: During the last 30 years, the use of prenatal care, both the proportion of women receiving the recommended number of visits and the average number of visits, has increased substantially. Although infant mortality has decreased,…

Have the boundaries of the ‘grey zone’ of perinatal resuscitation changed for extremely preterm infants over 20 years?

Joy Condie, et al.

AIM: To determine the boundaries of the grey zone of discretionary resuscitation over the past 20 years. BACKGROUND: As the likelihood of survival improves over time, the BW- and GA-specific boundaries of discretionary nonresuscitation…

A Tale Of Dollars, Pediatrics, And Late-Night Calls About Infant Constipation

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Lessons that Newborn Screening in the USA Can Teach us about Biobanking and Large-Scale Genetic Studies

Beth A. Tarini

The intent in establishing newborn screening programs was not to create and sustain a large-scale genetic biobanks. Instead, newborn screening programs were designed as a public health program. As such, they have successfully screened…

Antenatal counselling for parents facing an extremely preterm birth: limitations of the medical evidence.

Janvier A, Lorenz JM

UNLABELLED: When physicians are asked for a consult for women in premature labour, they face a complex set of challenges. Policy statements recommend that women be given detailed information about the risks of various outcomes, including…

Antenatal counselling for parents facing an extremely preterm birth: limitations of the medical evidence

Annie Janvier, John M. Lorenz

UNLABELLED: When physicians are asked for a consult for women in premature labour, they face a complex set of challenges. Policy statements recommend that women be given detailed information about the risks of various outcomes, including…

The evolving ethics of infant dialysis

Bradley A. Warady

In this paper, we review ethical issues that arise when families and doctors face clinical decisions about renal replacement therapy for an infant with end-stage renal disease (ESRD). Over the last 20 years, many centers have begun to…

Variations of practice in the care of extremely preterm infants

Annie Janvier

A normal gestation lasts 40 weeks following the mother’s last menstrual period, and prematurity is defined as a gestation lasting fewer than 37 weeks. Until the 1960s, most premature babies died. Four recent developments in neonatology –…

An Infant With Trisomy 18 and a Ventricular Septal Defect

Annie Janvier, et al.

Decisions for critically ill infants with trisomy 18 raise thorny issues about values, futility, the burdens of treatment, cost-effectiveness, and justice. We presented the case of an infant with trisomy 18 to 2 neonatologists with…

When Parents Refuse a Septic Workup for a Newborn

Elizabeth A. Simpson, Margaret Moon

Sometimes, parents refuse medical intervention for philosophical reasons. Pediatricians have an obligation to protect children from medical neglect on the part of their parents. Often, it is not clear where exactly to draw the line between…

When parents refuse a septic workup for a newborn.

Simpson E, Moon M

Sometimes, parents refuse medical intervention for philosophical reasons. Pediatricians have an obligation to protect children from medical neglect on the part of their parents. Often, it is not clear where exactly to draw the line between…

An infant with trisomy 18 and a ventricular septal defect.

Janvier A, et al.

Decisions for critically ill infants with trisomy 18 raise thorny issues about values, futility, the burdens of treatment, cost-effectiveness, and justice. We presented the case of an infant with trisomy 18 to 2 neonatologists with…

Costs and End-of-Life Care in the NICU: Lessons for the MICU?

William Meadow

Neonatal intensive care units (NICUs) and medical intensive care units (MICUs) are both very expensive. The cost-effectiveness of NICUs has been extensively evaluated, as has the long-term outcomes of subpopulations of NICU patients. NICU…

A Premature Infant With Necrotizing Enterocolitis Whose Parents Are Jehovah's Witnesses

William Meadow, et al.

With this article, we introduce a new feature in Pediatrics called “Ethics Rounds.” The goal of this new feature is to present clinical cases that raise ethical issues. We present each case to pediatricians and bioethicists, who comment on…

Cruel Calculus: Why Saving Premature Babies Is Better Business Than Helping Them Thrive

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Variation in the Treatment of Infants Born at the Borderline of Viability

William Meadow

Kaempf et al,1 in this month's Pediatrics, describe their experience with a formalized instrument for counseling pregnant women who are threatening to deliver between 22 and 26 weeks' gestation. They devised and pilot-tested their…

Variation in the treatment of infants born at the borderline of viability.

Meadow W

Kaempf et al,1 in this month's Pediatrics, describe their experience with a formalized instrument for counseling pregnant women who are threatening to deliver between 22 and 26 weeks' gestation. They devised and pilot-tested their…

A comparison of four prenatal care indices in birth outcome models: comparable results for predicting small-for-gestational-age outcome but different results for preterm birth or infant mortality.

VanderWeele TJ, et al.

OBJECTIVE: Several different indices of prenatal care have been used in birth outcome models to analyze the relationship between the adequacy of prenatal care and low birthweight, preterm birth, and infant mortality. This investigation…

Caregivers attitudes for very premature infants: what if they knew?

Annie Janvier, et al.

BACKGROUND: Decisions about resuscitation of extremely premature babies are controversial. Such decisions may reflect poor understanding of outcomes. OBJECTIVE: To compare caregivers' attitudes towards the resuscitation of a premature…

A comparison of four prenatal care indices in birth outcome models: Comparable results for predicting small-for-gestational-age outcome but different results for preterm birth or infant mortality

Tyler J. VanderWeele, et al.

OBJECTIVE: Several different indices of prenatal care have been used in birth outcome models to analyze the relationship between the adequacy of prenatal care and low birthweight, preterm birth, and infant mortality. This investigation…

Resuscitation in the “Gray Zone” of Viability: Determining Physician Preferences and Predicting Infant Outcomes

Jaideep Singh, et al.

OBJECTIVE: We assessed physician preferences and physician prognostic abilities regarding delivery room management of exceedingly low birth weight/short gestation infants. METHODS: We surveyed US neonatologists to assess their behavior in…

Ethics at the Limit of Viability: A Premie’s Progress

William Meadow

After completing this article, readers should be able to: Progress in neonatology is generally portrayed as inexorable—doing better and better with smaller and smaller. For approximately the first 30 years of the specialty, this was true.…

What Do Clinical Intuitions of Non-Survival Add to the Predictive Power of Algorithmic Assessments of Illness-Severity in the NICU? It Depends on When You Ask

Laura Frain, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Length of Stay for Illness-Severity Matched Non-Survivors of NICU Care Treated with High-Frequency Oscillation Vs Conventional Ventilation: He Who Picks a Rose Must Be Careful of the Thorns

Grace Yoon, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

The Difficulty of Being Anti-NICU

Literature and Medicine - Volume 18, Number 2, Fall

Length of NICU Stay for Non-Survivors is Longer on High-Frequency Oscillatory Ventilation (HFOV) than Conventional Ventilation (CV): The Dark Side of a New Technology? ♦ 173

Grace Yoon, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Usefulness of Serial Algorithms of Illness Severity as a Proxy for Impending Death in the NICU: Not Much ♦ 157

Laura Frain, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Certainty, Uncertainty, and Accuracy of Daily Predictions of Non-Survival in the NICU: We're Often Wrong but Rarely in Doubt ♦ 156

Laura Frain, et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Expert testimony, legal reasoning, and justice. The case for adopting a data-based standard of care in allegations of medical negligence in the NICU.

Meadow W

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

DISCUSSIONS ABOUT END OF LIFE (EOL) CARE AND PROGNOSTICATION IN THE NICU.• 231

et al.

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.

Withholding nutrition from newborn infants

Peer-reviewed publication from the Lantos bibliography. Open the venue link for the full text.