Ethics and Neonatal Care
Selected resources from The Hastings Center.
Advances in the care of critically ill newborns over the last 40 years have resulted in the ability to save the lives of the majority of even the sickest and smallest newborns. These infants are at great risk of very poor outcomes, but predicting these outcomes is very difficult in the early days of life. The withholding and withdrawing of medically indicated treatment from newborns are complex processes which can be fraught with disagreement. Read our briefing to consider: how should one determine what is in the best interest of a critically ill newborn, when the odds for any particular child are unclear?
From Hastings Bioethics Forum:
- Should New Mothers With Covid-19 Be Separated From Their Newborns?The Covid-19 pandemic has been characterized by many unknowns, chief among them in the world of pediatric ethics is the question of separating mothers who are infected or suspected of being infected from their newborns after delivery to reduce the risk of mother-to-child transmission. Guidance on this issue is conflicting.
- SUPPORT Update: OHRP’s Compliance Actions on HoldIn a thoughtful, nuanced letter to the University of Alabama (the home of the Principal Investigator of the SUPPORT study), the Office for Human Research Protection…
- Public Citizen: The SUPPORT Study was Even Worse than We ThoughtIn his April 18 Bioethics Forum article, John Lantos criticized the findings of the Department of Health and Human Services Office for Human Research Protections that the…
- Public Citizen and Misinformed Consent in Neonatal Intensive CarePublic Citizen, the so-called “citizen’s advocacy group,” continues to criticize the NIH-sponsored clinical trials of oxygen therapy for premature babies. They followed up their April 10th letter with…
- OHRP and Public Citizen Are Wrong about Neonatal Research on Oxygen TherapyOn March 7, 2013, the federal Office of Human Research Protections notified the principal investigator of the Surfactant, Positive Pressure, Oxygenation Randomized Trial (SUPPORT) that “the…
From Hastings Center Report:
First published: 24 April 2023
Over the past several decades in which access to abortion has become increasingly restricted, parents’ autonomy in medical decision-making in the realms of fetal care and neonatal intensive care has expanded. Today, parents can decide against invasive medical interventions at gestational ages where abortions are forbidden, even in cases where neonates are expected to be seriously ill. Although a declared state interest in protecting the lives of fetuses and newborns contributes to justifications for restricting women’s autonomy with regards to abortion, it does not fully explain this discrepancy. We believe that social portrayals of women as complying with or shirking their reproductive function play a major role in explaining it. The growing divide between a woman’s rights as a reproductive being and as a parent suggest that abortion restriction is rooted in a historical societal desire for women to serve as reproducers and in the corresponding fear of them abandoning this allotted role in pursuit of social equality. The Dobbs v. Jackson (2022) decision is not based in a view of abortion as a medical act occurring between a doctor and patient, as Roe v. Wade (1973) did, but decision-making about fetal therapy or NICU care is still viewed as occurring between a doctor and patient or surrogate because in this act a woman is seen as fulfilling her role as mother.
First published: 23 October 2020
The neonatologist was describing the dire situation, the complexity of the fetus’s anomalies, and the options—comfort care, some resuscitation—and finished by saying, “We would not recommend ECMO …” “We would not recommend” is a curious phrase. There is something ambiguous, very nebulous about it, something passive, noncommittal, maybe even deflective. As a bioethics researcher, I wondered how this phrase is interpreted, how it influences parents’ moral deliberation over their options.
First published: 21 February 2019
It is often pointed out that one cannot be “a little bit pregnant,” but pregnancy’s borders are no longer so crisp. At Children’s Hospital of Philadelphia, scientists have created an artificial womb in which “extremely premature” lambs were nurtured for four weeks, enough to make them ready to meet the world. The goal is to advance this technology until it is available for very premature human infants. At present, we put preemies into neonatal intensive care units, which are extremely stressful for the babies and their families, and the things we do to try to support them often cause serious damage. If successful, the artificial womb could be a terrific technology. The implications are remarkable. Would humans become somewhat like marsupials? Now, one is either born or not. Would this technology create a new, intermediate stage? What would this mean ethically and legally?
First published: 19 February 2018
Early in my career as a neonatologist, I was called into the hospital for a newborn who would not stop crying. Screaming, really. When I entered the unit, I was greeted by a loud, shrill, distinctive cry. After hearing the history and examining the baby, I just stood there for a while, watching and listening. It took some time, but eventually, I noticed a subtle regularity, a rhythmicity. I took off my watch, placed it on the bed next to the child, and found that the crying briefly grew louder about every six or seven seconds. This baby was having an atypical seizure. This preliminary diagnosis was followed by a conversation with the parents and a neurologist, transfer to the nearby academic center for an extensive evaluation, and the eventual demise of the child from a poorly understood disease. About a year later, I walked into the same unit and heard a cry I had heard only once before. I looked over to see the same mother at a newborn’s bedside, with tears in her eyes, looking back at me. She knew what the coming days held for her and for her second child. That was over twenty years ago, but two images, or moments, remain with me. One is the watch on the bed next to the first baby; the other is the mother’s expression of sadness the morning the second child was born. The image of the timepiece is perhaps instructive.
First published: 27 July 2017
I was a second-year neonatal-perinatal fellow in a meeting between other members of the neonatal intensive care team and parents who had just received devastating news about their planned-for and highly desired baby, born after what had been an uncomplicated pregnancy. At home, a little sister was waiting to meet her new brother. These conversations are never easy, but this one I found particularly disturbing. John had been born at term via emergency cesarean section after his mother, Muriel, had come for a routine obstetrical visit and reported decreased fetal movement. The obstetrician had detected a very slow fetal heart rate and sent Muriel to the hospital for emergent delivery. John was born floppy, with no respiratory effort. He was resuscitated, but a heart rate was not detected until fifteen minutes after birth. Not until several months later did I discover what had troubled me so much in this family meeting.
First published: 27 July 2017
In a study published in late April in Nature Communications, the authors were able to sustain 105- to 115-day-old premature lamb fetuses—whose level of development was comparable to that of a twenty-three-week-old human fetus—for four weeks in an artificial womb, enabling the lambs to develop in a way that paralleled age-matched controls. The oldest lamb of the set, more than a year old at the time the paper came out, appeared completely normal. This kind of research brings us one step closer to providing excellent quality of life for premature newborns, but it also portends major legal and ethical questions, especially for abortion rights in America.
First published: 21 September 2016
Wait, what? I’ve been fired?” I repeated, in the middle of morning rounds in the neonatal intensive care unit. Finally, the nurse who was taking care of our patient, Angela, responded, “Her parents fired you last night. They’ve already called Patient Relations. They want a new doctor.” My heart sank. Only days into my block of service time as the attending physician in the NICU and I was fired, axed, canned, rejected by a family. How could this have happened? On my first day of service, I had introduced myself to Angela’s parents, and I had then met with them daily to review results and the plan and to answer their questions. I thought we had connected well. I thought I had done everything right. I thought they trusted me to care for their daughter.
First published: 20 January 2016
This November I spent three days in Washington, D.C., splitting my time between The March of Dimes Prematurity Prevention Conference and a National Institutes of Health meeting about the use of genome sequencing technology in newborns. The trip was a powerful reminder for me of a problem I’ve confronted before.
First published: 10 November 2015
Deborah is a thirty-three-year-old who presented to labor and delivery at thirty-seven weeks gestation with complaints of contractions. Upon arrival, she explained that her fetus, Nathan, had been diagnosed with a “lethal” condition by her primary obstetrician. At twenty-two weeks gestation, an amniocentesis confirmed trisomy 13, a chromosomal abnormality leading to miscarriage or stillbirth in nearly one-half of affected pregnancies. During the admission process, Deborah voices the worry that due to Nathan’s brain and heart structure, vaginal delivery could be traumatic and cause him to suffer. Deborah wishes for him to have as painless and as dignified a death as possible; cesarean section, she feels, will achieve this. Yet with her history of three prior vaginal deliveries, normally progressing labor, and poor fetal prognosis that is unlikely to improve with cesarean delivery, there is no maternal or fetal indication for a cesarean section. Should the obstetrician proceed with a cesarean delivery despite knowing that it would expose the mother to surgical risks with little or no corresponding fetal or neonatal benefit?
First published: 19 January 2015
The debate about the ethics of the Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) often focuses on the assumptions made by the different parties involved, failing to note the lack of a necessary connection between those assumptions and the main criticism of the study—that the parents appear to have been poorly informed. The fact that the target ranges of oxygen saturation (SpO2) used in SUPPORT were within the range recommended as an appropriate “standard of care” does not mean that the infants randomized to one of two restricted SpO2 ranges received the same treatment they would have received outside of the trial. The corresponding observation that randomization altered the potential harms to which an individual infant was exposed does not mean that the risks of being in SUPPORT were greater than or in addition to the risks associated with usual care. The argument that parents should have been better informed about these potential harms does not entail the (incorrect) assumption that neonatal clinicians make individualized treatment decisions rather than follow a standardized protocol when adjusting the level of oxygen a preterm infant receives. The fact that parents are unaware of the trade-off clinicians make between these potential harms when establishing such a protocol does not justify the failure to adequately inform parents about the purpose of SUPPORT and the risks and harms that were involved.
Were There “Additional Foreseeable Risks” in the SUPPORT Study? Lessons Not Learned from the ARDSnet Clinical Trials
First published: 19 December 2014
SUPPORT, a study involving approximately 1,300 premature infants who were randomly assigned to treatment protocols that differed in whether they offered higher or lower levels of oxygen saturation, was purportedly an example of comparative effectiveness research performed in the intensive care unit. However, SUPPORT became highly controversial. One source of controversy involved the proper determination of “reasonably foreseeable risks.” Commentators debated whether randomization to contrasting restrictive strategies that are within existing standard-of-care treatments imposed additional “reasonably foreseeable risks” greater than what study participants would have received outside of the research. A second controversial issue had to do with disclosures in informed consent documents. This article explores these issues.
We argue that randomization to contrasting restrictive interventions lying at the outer ends of “standard-of-care” practices differs in important ways from unrestricted “standard-of-care” practices available outside of a proposed study; that research involving such randomization might pose additional “reasonably foreseeable risks” from what occurs in “standard-of-care” practices; and that for trials whose study designs are similar to the SUPPORT study, respect for persons requires the disclosure of information about the nature of the experimental procedures and their risks.
First published: 21 November 2014
Ethically complex and challenging cases confront health care professionals in neonatal-perinatal medicine more often than in most other subspecialties in medicine. Neonatologists regularly encounter situations where crucial life-or-death decisions need to be made in the best interest of an infant and its family. While physicians and their professional societies seem to dictate this best interest standard by weighing the risk of mortality and morbidities, parents may have other perspectives to be considered.
Our review of programs for teaching ethics in Canadian neonatal-perinatal residency programs has revealed that 90 percent of them incorporated formal and informal medical ethics education, meeting the Royal College of Physician and Surgeons of Canada requirements, but that the teaching strategies, topics covered, and time devoted to teaching ethics are not standardized. Lectures and case presentations—the pedagogic strategy used by most programs—are not ideal for teaching communication skills. We propose, therefore, a holistic approach to teaching and training that imparts (1) a traditional understanding of ethical theory and reasoning, (2) advanced skills in communication and counseling, and (3) a disposition to engage in self-reflection and to be aware of the emotional and spiritual dimensions of neonatal-perinatal medicine.
First published: 09 January 2014
I was recently invited to talk about ethics with the staff of a level-three neonatal intensive care unit. They presented a case featuring a full-term baby born by emergency caesarean-section after a cord prolapse that caused prolonged anoxia. Her initial pH was 6.7. She was intubated and resuscitated in the delivery room. Her Apgar score remained at 1 for ten minutes. Further evaluation over the next two days revealed severe brain damage. Her prognosis was dismal.
The doctors recommended a do-not-resuscitate order. The parents agreed. The doctors suggested a gastrostomy tube. The parents disagreed. Instead, they requested that fluid and nutrition be discontinued. The emotions in the room, as we started to discuss the case, were strong and discordant. Eventually, the conversation wound down. They turned, expectantly, to the visiting bioethicist.
First published: 09 July 2012
Intensive care units provide focused, aggressive medical intervention to critically ill patients. Physicians responsible for ICU triage must decide which patients are sick enough to require this level of care and which can be managed on the general wards. While some patients are too well for the ICU, intensivists increasingly rely on another category, “too sick to benefit,” when denying ICU admission, even if beds are readily available. Recent studies indicate that between 19 and 37 percent of patients refused ICU admission were declined because they were thought too sick to benefit from it, suggesting that physician use of this category is common in ICU triage.
The idea of being too sick to benefit may seem paradoxical given that ICUs exist to treat the sickest of the sick. There is, however, increasing awareness that some diseases progress despite maximal intervention. Although there have been systematic attempts to define these diseases—most notably during the medical futility debates of the 1980s and early 1990s—there is little evidence about which conditions make a patient too sick to benefit from ICU admission. In the absence of a clear understanding of which diseases progress despite maximal care, ICU triage under the category “too sick to benefit” is currently done on a case-by-case basis. Contemporary decisions about who is too sick to benefit thus raise a number of ethical issues about what constitutes standard of care, the role of health care providers’ judgments of quality of life in triage, and the just allocation of resources.
Addressing these ethical concerns requires us to better define the population of critically ill adults who are too sick to benefit—a conceptual and empirical project. In this article, I recommend employing a diagnostic concept from the neonatal literature: namely, a lethal disease.
First published: 09 July 2012
Giving up on our dreams is not easy. I am a neonatologist, and I often watch the parents of my patients wish for the impossible. They come to the NICU with their own stories, their own expectations, and their own values. They have had nine long months to imagine their perfect child and often struggle with learning to accept the hand they have been dealt and the child they really have.
Neonatology and geriatrics have a lot in common. Both specialties treat patients who cannot describe their symptoms. Both deal with family members who are serving as surrogate decision-makers. These family members often wrestle with end-of-life issues, and they share a tendency to sometimes base their decisions on emotions rather than on the best interests of the patients involved. I know this, but I didn’t really understand it until I lived it.
First published: July 2004
The Child Abuse Amendments of 1984 established the norms for treating disabled newborns, but they did not address the treatment of premature babies. Parents and physicians need a framework for decision-making. A decision handed down recently by the Texas Supreme Court is a step forward.
First published: August 1998
Ethicists who advocate the permissibility of infanticide often have misrepresented history in their arguments. The Western tradition supports the prohibition of active killing of congenitally impaired or premature newborns whose futures are uncertain.
First published: August 1986
The ethical tensions inherent in all Baby Doe treatment decisions are compounded by medical uncertainty. Physicians both here and abroad have adopted various strategies. Swedish doctors tend to withhold treatment from the beginning from infants for whom statistical data suggest a grim prognosis. The British are more likely to initiate treatment but withdraw it if the infant appears likely to die or suffer severe brain damage. The trend in the U.S. is to start treating any baby who is potentially viable and continue until it is virtually certain that the infant will die. The “least worst” strategy is an individualized one: starting treatment gathering data, and then reassessing the decision.
First published: April 1986
Current federal policy, as reflected in the final Baby Doe rule, will have a chilling effect on the ability of doctors to care appropriately for severely disabled infants. The policy threatens to prolong life unjustifiably for such infants. It will force physicians to violate a duty to do no harm without compensating benefit. And it raises serious problems for the just distribution of health care.
First published: June 1985
DHHS’s rule on the care of imperiled newborns has a symbolic significance for the groups that struggled for compromise, but it will have a minimal impact on medical and moral decision making.
1971: Film “Who Should Survive” Created
A film about a newborn with Down Syndrome who is allowed to die is produced by the Kennedy Foundation. This film exposes a common practice in newborn nurseries and contributes to public dialogue on neonatal decision-making.
1973: Publication of Raymond Duff and A. G. Campbell’s Moral and Ethical Dilemmas in the Special-Care Nursery
In this New England Journal of Medicine article, Duff and Campbell describe the open process used in the neonatal ICU at Yale-New Haven Hospital to reach consensus about the treatment of catastrophically ill newborns. In many hospitals, these decisions were made behind closed doors with varying levels of involvement of parents. This article facilitated public debate and transparent decision-making.
R. S. Duff and A. G. Campbell, “Moral and Ethical Dilemmas in the Special-Care Nursery,” New England Journal of Medicine 289, no. 17 (1973): 890-4.