critical care decisions in fetal and neonatal medicine

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Ethical decisions in fetal medicine and neonatal intensive care

The Nuffield Council on Bioethics (2006) report Critical Care Decisions in Fetal and Neonatal Medicine: Ethical issues addressed three areas of concern to professionals and the public: fetal medicine, the borderline of viability, and critical care decision making for babies receiving intensive care. Common principles and initial recommendations for professional practice are presented in the report which is based on wide consultation. While many professionals may feel that the report re-iterates current good practice, it also demonstrates inequity and inconsistency in practice across the country. Royal Colleges and other interested parties need to act to address these inconsistencies and further develop consensus guidelines. The need for transparency in decision making and for a true partnership approach to all aspects of fetal and neonatal care is reaffirmed, with recommendations for action by government and professional bodies as well as by professionals delivering obstetric and neonatal care and their educators.

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November 15, 2006

Critical care decisions in fetal and neonatal medicine: ethical issues.

Speakers: Prof Margaret Brazier, Chair of the Working Party and Professor of Law, University of Manchester Prof Andrew Whitelaw, Professor of Neonatal Medicine, University of Bristol Medical School Bonnie Green, Head Of Professional And Public Affairs, BLISS Prof Linda Franck, Professor and Chair of Children’s Nursing Research, Institute of Child Health

Advances in medicine mean that families and health professionals can be faced with very difficult decisions about the care of extremely premature or seriously ill babies. The Nuffield Council on Bioethics panel briefed the media on the scientific issues raised, ahead of the report launch.

in this section

Filter briefings by year, search by tag, privacy overview.

As neonatal medicine has progressed in the United States, the presence of clinical ethics (ie, bioethics, medical ethics, healthcare ethics) in the healthcare environment has also increased. [ 1 ] For nearly 70 years, neonatal medicine has been practiced to provide specialized and intensive care measures aimed at improving the health and survival of premature and critically ill newborns. [ 2 ]

Throughout this period, great strides were made in improving the technical capabilities that allow more rapid and precise diagnoses, effective monitoring, and specific therapy. The availability of special-care nursery beds also increased dramatically, as did the number of professionals and specialists trained to care for this vulnerable population.

The results of this progress are mixed. There has been a substantial reduction in the mortality of premature infants , whereas the rate of handicap or significant morbidity appears to have remained steady or declined in survivors of the neonatal intensive care unit (NICU) for nearly all gestational ages and weights. The incidence of preterm birth in the United States decreased between 2007 and 2014 but appeared to be on the rise again in 2015. [ 3 ] The rate of low birth weight babies (those with birth weights <2500 g) declined. Furthermore, the rate of birth defects remains relatively constant, and infant mortality, although diminished over the past decade, remains higher in the United States than in many other developed nations. Finally, the persistent discrepancy between black and white infant mortality remains a concern.

Questions about the ethical issues in neonatal care include the following:

Who deserves access to prenatal and neonatal specialty care?

Who pays for this care?

Are the costs of neonatal intensive care acceptable?

How can this care be assured and equitably distributed?

Are some babies too sick or too premature for newborn intensive care?

What outcomes of neonatal intensive care are too burdensome?

Who decides whether an infant receives care?

How are these decisions made?

These questions remain at the root of what many healthcare professionals see as continuing dilemmas in providing neonatal intensive care. These questions are often raised at the bedside while providing care, during teaching rounds, and during special ethics rounds held in the neonatal intensive care unit (NICU). They may also be discussed by policy makers, administrators, and advocacy groups.

Often, however, these questions are asked in an obscure manner, and the sequence of questions is typically in the reverse order of their annotation above. Healthcare professionals often hear, "Are we doing the right thing for this baby? What else can we do for this patient? Would the infant be a candidate for this therapy or a different one?"

Amidst the flurry of activity in stabilizing the health of an infant or working through his or her resuscitation , professionals from all disciplines involved in the care of a critically ill newborn may wonder, "Why is this procedure being performed? Should this intervention stop? What do the parents want? Is a better, or more standard, way of providing this care available?"

Often, after hours or days of exhaustive efforts that may still result in neonatal death, clinicians may wonder, "Why are we here? Did we make a difference? What are we trying to accomplish with these efforts?"

These questions broach issues that are central to the clinician's perception of being a valued person in the NICU environment while trying to serve patients, families, and a broader society. [ 4 ] In part, these questions reflect the values of the healthcare professions, the values of individuals, and the values of patients and families. To ignore these questions is to fail to recognize the significant influence that these values and cultural influences have had in shaping individual professional lives and human interactions.

Beyond that, failing to answer these questions perpetuates an inability or unwillingness to responsibly address the value-laden charge that comes with professing to be willing and able to help a newborn who is vulnerable and sick, which is the charge to practice the art of medicine with scientific rigor, technologic skill, and human caring, even in the face of medical uncertainty. Ignoring these questions leads to moral uncertainty and, quite possibly, moral distress or angst stemming from doing things against one's own better judgment.

This article considers three questions that pertain to some of the ethical issues raised in neonatal medicine. For this discussion, ethics are defined as the applied philosophical study of right actions or how healthcare professionals may struggle to do what is right or good for their patients. These questions aim to address the ethical concerns raised by caring for critically ill newborns.

What are the goals of neonatal intensive care?

As in other clinical paradigms, neonatal medicine requires a defined end or objective, which may be presumed to be treating the newborn who is ill and/or curing any acute disease process that impedes the normal physiologic transition toward healthy extrauterine life. But what are the more global goals? Or, when the curative model is inadequate, what do the goals become?

What place do guidelines have in the ethical practice of neonatal medicine and how should they be developed?

As neonatal medicine has been practiced in the United States and around the world, numerous guidelines have emerged. [ 5 ] The roles of authoritative statements, professional policies, and recommendations lead to this question.

What is good for critically ill newborns and who determines this?

The presence of numerous voices in deliberations about newborn patient care presses this question.

Healthcare professionals may experience frustration at the lack of specific resource material that provides a ready answer to the ethical issues in neonatal care. If such material were available and agreed upon, the vexing nature of these questions may have long since passed. Although a difference of opinion in material authored by philosophers, clergy, lawyers, administrators, healthcare professionals, and parents is expected, one may think that some hint about the explicit goals of neonatal intensive care could be found. This is not necessarily true.

After reviewing major textbooks and the medical literature, as well as attending local, regional, and national meetings for years, the author has only relatively recently found sparse discussion of the goals of neonatal intensive care openly stated. This is the basis of the problem encountered when working through ethically challenging situations. Involved professionals and parents first must come together and decide what neonatology is about. Neither the simply stated goal "to save all babies" nor "to reduce infant mortality" says enough.

In addressing ethical issues in the neonatal intensive care unit (NICU), at all times consider the goals of specific monitoring, diagnostic tests, therapies, or research protocols that are administered. Center the goals of care on the patient and the family. The patient is treated, but the family must live with the long-term consequences of the daily decisions made in caring for the baby. [ 6 ]

Essential components

Skilled professional care

Goals include more than the simple application of critical care technology, such as ventilators, monitors, medications, invasive devices, and a multiplicity of laboratory measurements, to sick and premature newborn patients.

The goals of neonatal intensive care include the provision of skilled professional care. This requires trained professionals of many disciplines to create an effective team of providers who render neonatal intensive care; no single professional can do this alone.

Physical constraints

Care is extended over a necessarily limited time period. The simple physical constraints of a nursery environment make evident the unsuitable nature of the NICU for older infants and children. The developmental needs of growing newborns and young infants are difficult to meet in the NICU environment from the standpoint of staffing, time use, and patient access and interaction (with family or staff) throughout the passing months.

Conclusion of care

The ends to which care is provided include initial stabilization of the newborn and, ultimately, facilitation of the transition to normal, extrauterine, neonatal physiology. This transition takes longer for some infants and may require significant intervention and support. The reversal of acute disease processes, such as infection and respiratory distress, is a recognized end.

Iatrogenic effects

Minimizing chronic or debilitating outcomes, including iatrogenic sequelae of applied neonatal intensive care, falls within these goals. The potential for negative iatrogenic effects in much of what is performed in neonatal practice must be recognized. Such effects may result from the following:

Environment in which the baby is managed (eg, light, noise, touch)

Mode of ventilation (eg, conventional, synchronized, high-frequency)

Types, doses, and results of medications used

Short- and long-term effects of certain, often painful, procedures

Foreign bodies or devices used

How the baby's nutritional needs are met (with regard to enteral nutrition and parenteral nutrition)

Expected outcomes

Provide care with a reasonable expectation of steady improvement. Care should proceed with the absence of unnecessary pain and avoidable suffering. Develop care toward a capacity for the newborn to enjoy and participate in the human experience over a life prolonged beyond infancy.

Goals seek to maintain a focus upon the best interests of the child. In determining the best interests of the child, the parents generally are considered to be the spokespersons; hence, seek their opinions, discern their values, and consider their goals. [ 7 ] Leuthner eloquently describes the process of "negotiated" best interests of the child (by the parents). [ 8 ]

Decision-making methods

Shared decision making should be the commonly used process, requiring shared information among relevant care providers and a willingness and capability to communicate effectively with parents.

This process also suggests the need for outcome data. Such data should be relevant to the population seeking care at a given institution. Relying on national or other reported regional or institutional data from outside a particular practice setting is not always valid, because data from different practice settings likely are neither constituted nor controlled in the same fashion. The provision of care, which is decided on by local clinical and population data, and the determination of best interests, or what can be viewed as either effective, beneficial, and appropriate care versus ineffective, burdensome or inappropriate care, demand the availability of data from which to make these determinations with parents. Until such data are available, healthcare professionals should be frank in recognizing and communicating some uncertainty in their decisional process with parents.

Conversely, although objective outcome data are important, for any given baby, the chance of a certain outcome is either 0 or 100%. Thus, esoteric discussions of relative risks, while useful for healthcare professionals, may not be particularly helpful when discussing treatment options, risks, and benefits with parents and other family members.

Neonatal intensive care unit (NICU) guidelines are developed to communicate professional medical consensus and to assist in ethical issues in neonatal care. Institutional, regional, or societal goals can establish norms and provide reference points to assist healthcare professionals and parents as they make decisions. Clinical practice guidelines have gained broad acceptance by healthcare managers and many clinicians in the past several years.

Existing guidelines

Medical futility or futile care

Several US regions have developed clinical ethics guidelines to address this issue, including Houston, Texas; Charleston, South Carolina; Denver, Colorado; Sacramento, California; and the state of Georgia. Their appropriateness and applicability must be determined in the context of each individual case. Again, futility must be determined in the context of goals and the likelihood, as well as appropriateness, of applied interventions achieving the desired ends.

Do not resuscitate orders

Guidelines for the use of do not resuscitate (DNR) orders developed and promulgated by professional societies and ethicists have assisted in the day-to-day management of numerous difficult issues, including determining brain death and the withdrawal or withholding of life-sustaining therapy. [ 9 ]

Other guidelines of ethical import include the following:

President's Commission for the Study of Ethical Problems in Medicine, and Biomedical and Behavioral Research. Seriously ill newborns. In: Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical and Legal Issues in Treatment Decisions. Washington, DC: US Government Printing Office. 1983. [ 10 ]

The Hastings Center. Guidelines on the termination of life-sustaining treatment and the care of the dying. Washington, DC; 1987. [ 11 ]

American Academy of Pediatrics (AAP) and American College of Obstetricians and Gynecologists (ACOG). Obstetric and Medical Complications. Guidelines for Perinatal Care . 6th ed. 2007;184-204. [ 12 ]

Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, Society of Obstetricians and Gynaecologists of Canada. Management of the woman with threatened birth of an infant of extremely low gestational age. CMAJ . Sep 1 1994;151(5):547-53. [ 13 ]

MacDonald H. Perinatal care at the threshold of viability. Pediatrics . Nov 2002;110(5):1024-7. [ 14 ]

AAP Committee on Fetus and Newborn. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics . Feb 2007;119(2):401-3. [ 15 ]

Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues. Available at: http://nuffieldbioethics.org/project/neonatal-medicine/ . [ 5 ]

When applying these technologies, consider guidelines such as Tyson et al's evaluation of criteria for considering risk-benefit ratios in providing intensive care interventions (eg, mechanical ventilation to extremely low birth weight infants) as well as the National Institute of Child Health and Human Development (NICHD) calculator for prognosticating extremely low birth weight infant outcomes. [ 16 ]

Institution-specific data are of absolute import in providing informed guidance for parents and should complement or be more important than the prognostic efforts engendered by collective national data such as the NICHD calculator. To this end, a single-center study revealed outcome data over the 1998-2008 period that informed and changed their practice for extremely low birth weight infants. [ 17 ] Such data can affect the appropriateness of guidelines, such as those developed at the Medical College of Georgia for hospice care of newborns with life-limiting conditions. [ 18 ] The sharing of information and process of keeping guidelines up to date may prove beneficial to staffs and families and may serve newborn patient best interests.

Communication process

In the attempt to derive guidelines at any level, give attention to the processes of communication and decision making. This process may be more important than the actual product, the specific guideline itself. If both professional and community consensus building can work toward deriving guidelines that address the needs of the community, then such work is beneficial.

Often, the initial communication is the most difficult. Even if the parents know what their wishes are and can communicate them, the timing of premature deliveries unfortunately may not afford the luxury of ascertaining parental wishes prior to birth. The aim of guidelines should not be to dictate medical care but to facilitate decision making and perhaps give consistency to the process in which difficult decision making takes place. An end result may be that families are empowered in decision making; however, certainly all parties involved in these decisions for critically ill newborns should benefit from enhanced communication and clearly defined goals.

Using a cautious approach

Four reasons to consider a more cautious approach to the use of neonatal intensive care than simply providing it to every patient at all times are as follows:

Guidelines for the appropriate application of neonatal intensive care may help healthcare professionals as they consider the possibility that the provision of every imaginable resource to the smallest, most ill, and most vulnerable infants may compromise the outcomes of other patients (eg, late preterm or term infants who have better prognoses).

Allocating scarce resources to provide for the needs of all babies is difficult; often, the extremely low birth weight infants garner all of the attention, perhaps to the detriment of larger babies. Clearly, what is used for one patient is unavailable to others.

Applying any and all available technologies and interventions to every infant gives the impression of valuing the technology over the human nature of the patient, family, and clinical staff. Unnecessary and inappropriate burden may be thrust upon any and all of these parties (pain, suffering, moral angst).

Given the relatively limited availability of NICU follow-up data, the generally poor tracking of patients after discharge, and the failure of many clinicians to listen to parents' wishes and concerns, unrestrained interventions actually may be a disservice to patients or their families.

Positive aspects

Guidelines reflect thoughtful consideration by experts. Although they do not necessarily provide the absolute answer, they provide a possible answer and, generally, more than just a starting point. Knowing that a group of concerned professionals have addressed a problem, considered multiple perspectives, and examined options and outcomes to the best of their abilities is reassuring. When confronted with weighty problems, not feeling alone and the ability to rely on the experience and expertise of others is helpful.

Guidelines enable professionals who previously have been constrained by a lack of policy or clear direction regarding certain problems. If a hospital has never addressed withholding certain life-sustaining care, making such decisions or seeing them implemented may become difficult. If a new technology is offered without guidelines for indicated or appropriate use, be it clinical or research, using that technology reliably or responsibly may prove difficult. Guidelines in such cases enable staff and institutions to make responsible decisions with their patients' best interests in mind.

Guidelines empower the team of healthcare professionals and parents involved in a particular case. Guidelines typically identify responsible decision makers and provide a voice to those whose perspectives should be considered.

The process of deriving guidelines encourages teamwork, communication, and confronting (rather than avoiding) issues. When facing difficult issues, many staff members need encouragement. Professional staff members feel a sense of accomplishment upon the completion of a guideline, and they are encouraged to face a new or different problem needing similar attention in the future.

Guidelines, and the process by which they are developed, are educational for all involved and provide a format for educating the staff and community. Contributing to the process of developing a guideline, at the institutional, community, or professional society level, is an educational experience. Once derived, communicating these guidelines to the community of interested persons (patients, staffs, professionals, the public) involves ongoing education. The disclosure or dissemination of guidelines may provide a springboard for additional educational endeavors.

Negative aspects

Potential negative aspects of guidelines in healthcare decision making are noted. The most obvious of these is the fact that guidelines are, of necessity, incomplete. Not all healthcare cases fall under the general guideline parameters. Some cases test the system or do not represent the norm; hence, consistency may not result in every case, even with the best-intended guidelines.

Guidelines are recognized as imperfect because they are imperfect. However, as previously stated, guidelines represent more than a simple starting place and reflect considerable expertise and judgment. The exceptional case does not negate the value of the guideline any more than the guideline reflects simple anecdotal experience. The value lies in the broader applicability of the guideline to most cases.

In view of these potential shortcomings, guidelines do not please everyone. Some practitioners see them as an intrusion into what they believe to be private decision making; others view them as medicine by committee, and still others view guidelines as unwarranted bureaucratic oversight.

In some situations, tragic situations leave only tragic options. Guidelines cannot resolve the hurt associated with the emotional investment made toward patient care when outcomes are dismal. Following a guideline does not necessarily make a dismal outcome easier to bear.

Responsibilities

Guidelines need to be based on fact. The use of data is fundamental to the credibility of guidelines. Such data should be more than anecdotal and ideally should reflect local institutional or regional experience rather than national data, which may represent a significantly dissimilar population that undergoes vastly different experiences over remote points of time. Data should be current, complete, and comprehensive.

Currency of guidelines

Guidelines should be kept current. When conditions in place at the time a guideline was developed change (eg, local population; availability of healthcare technology; social, political, or fiscal influences), evaluate the guidelines and, if necessary, change them to reflect the new paradigm.

Responsibility for public disclosure

Responsibility for public disclosure is necessary within any institution that develops or uses guidelines. Patients who are subject to care under certain guidelines have a right to know how they are affected by them, and healthcare professionals have a duty to inform patients of these guidelines. This responsibility stems from the principles of respect for persons, patient autonomy, avoidance of harm, and maximizing benefit. This is the nature of fiduciary, or trust-based, relationships between healthcare professionals and their patients. Only in this way can such professionals truly be advocates for their patients. Advocacy begins with staff involvement in the development of guidelines, but it realizes itself in the conveying of information to patients and families to facilitate their understanding of why care proceeds along certain lines and how they can contribute to it.

In addressing the third question, doing what is good for critically ill newborns, the concept of doing good is worthy of some attention. Doing good appeals to people of sound moral character and is assumed practically in all who have pursued professions in the healing arts. Healthcare professionals are healers. They are people who look out for the well-being of their patients. They act positively to accomplish good health and to avoid perceived harms that would be contrary to their patients' good health.

Traditionally, communities or populations who share moral traditions have subscribed to a concept of the good. These communities and populations may include the following:

Communities of faith

Communities with a shared ethnic or social heritage

Perhaps, a perceived image of health that is shared

More recent reflection suggests that a great deal of diversity is observed in the moral concept of what "the good" is to which individuals should aspire. Given the many diverse communities across the United States, that they do not universally share the very idea of good health is not surprising. Perhaps the peculiar American emphasis on individuality and independence has disrupted previously shared values of what is good health within traditional moral or faith communities.

Even in the environment of the neonatal intensive care unit (NICU), where shared professional training, avowed determination to work for their patients' best interests, and experiences that would appear commonplace to all are present, a diversity in the concept of the good exists. This leads to situations in which no universal agreement occurs as to which of many alternatives is the right good or even whether the good that is pursued is worthwhile. How, then, is "the good" defined?

In many specific healthcare environments, a concept of the good must be refined to reflect the peculiarities of the patients, their conditions, the available treatment alternatives, the values placed upon those alternatives by relevant parties, the likely outcomes of treatment or nontreatment, and the influences of external considerations. In the NICU, as elsewhere, goods that are pursued include health, prevention or elimination of disease or morbidity (including iatrogenic sequelae of treatment), relief of unnecessary pain or suffering, and the prolongation of life.

Joy Penticuff, a nurse writing in the text Ethics and Perinatology, stated that the goods desired for infant patients in the NICU include comfort, opportunities for affectionate parental interaction that promotes infant-parent emotional bonding, and protection and nurturance of the infant's future emotional, cognitive, and physical development. [ 19 ] Although these and others are desired goods for neonatal patients, they may not be easy to accomplish. At times, barriers to the accomplishment of these desired goods seemingly are present.

Consider the following barriers to achieving the good:

Lack of knowledge: Healthcare professionals may need larger amounts and more diverse types of information.

Lack of sufficient time: Healthcare professionals may need to act immediately and may not have the luxury of contemplation.

Lack of interest: Some members of the healthcare team, perhaps someone known well, may not be interested in achieving the good.

Emotional barriers: These may be present in the individual healthcare provider, colleagues, parents, and others.

Past experiences: Experiences in similar cases or with similarly charged emotions may exist.

Intimidation: Healthcare providers with real or perceived power may intimidate others.

Lack of perceived power or a poor team concept: Lack of being valued as a contributor to the treatment team can provide a barrier.

Lack of policies or guidelines: Policies or guidelines may not exist to facilitate action or an organized approach to a problem.

Lack of a concept of goals for this patient

Lack of resources: Monetary, equipment, personnel, or other lack of resources can provide barriers to achieving the good.

Failure to include the parents in decision making

Perhaps the final consideration in answering these questions is that each day, healthcare professionals must work within the realities of the cases before them. Each patient has a unique set of problems that prompt action, moral reflection, and reevaluation. Each family brings with it the awareness that the prevailing (or traditional) concept of family must be adjusted to what comprises the group of nurturing interested persons for this baby. Each diagnosis challenges the collective knowledge and notion of effective care of a healthcare team. Each healthcare dilemma reminds caregivers of their limitations, including uncertainty, the human predicament, lack of knowledge, and decision-making abilities. All of these are tempered by the moral constraints under which they act.

Healthcare professionals must, at times, accept the reality that tragic cases have tragic outcomes; the healthcare professional may not always rest easy with decisions wherein the pursuit of some good yields only emptiness. As John Dewey stated, "All the serious perplexities of life come back to the genuine difficulty of forming a judgment as to the values of a situation; they come back to a conflict of goods."

In summary, the reader and practitioner are asked to not only inquire, "What good are we doing here?" but also to move toward defining goals, perhaps for the specialty, but more realistically, for the individual patient. Base each patient's care on goals of care that are consonant with professional goals, societal norms, institutional mission, and mutually derived goals with parents or families. This requires time and thoughtful reflection while communicating with families and advocating for the patient's benefit. Consider the potential value of guidelines in the process of working through common or recurring problems, ethical or otherwise, in the nursery and hospital. In so doing, the good that individual healthcare professionals perform may become more evident to themselves, their colleagues, and their patients.

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Bonet M, Cuttini M, Piedvache A, et al MOSAIC AND EPICE research groups. Changes in management policies for extremely preterm births and neonatal outcomes from 2003 to 2012: two population-based studies in 10 European regions. BJOG . 2017 Mar 14. [QxMD MEDLINE Link] .

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Contributor Information and Disclosures

Brian S Carter, MD, FAAP Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Attending Physician, Division of Neonatology, Children's Mercy Hospital and Clinics; Faculty, Children's Mercy Bioethics Center Brian S Carter, MD, FAAP is a member of the following medical societies: Alpha Omega Alpha , American Academy of Hospice and Palliative Medicine , American Academy of Pediatrics , American Pediatric Society , American Society for Bioethics and Humanities , American Society of Law, Medicine & Ethics , Society for Pediatric Research , National Hospice and Palliative Care Organization Disclosure: Nothing to disclose.

Mary L Windle, PharmD Adjunct Associate Professor, University of Nebraska Medical Center College of Pharmacy; Editor-in-Chief, Medscape Drug Reference Disclosure: Nothing to disclose.

Ted Rosenkrantz, MD Professor, Departments of Pediatrics and Obstetrics/Gynecology, Division of Neonatal-Perinatal Medicine, University of Connecticut School of Medicine Ted Rosenkrantz, MD is a member of the following medical societies: American Academy of Pediatrics , American Pediatric Society , Eastern Society for Pediatric Research , American Medical Association , Connecticut State Medical Society , Society for Pediatric Research Disclosure: Nothing to disclose.

Scott S MacGilvray, MD Clinical Professor, Department of Pediatrics, Division of Neonatology, The Brody School of Medicine at East Carolina University Scott S MacGilvray, MD is a member of the following medical societies: American Academy of Pediatrics Disclosure: Nothing to disclose.

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Seminars in Fetal and Neonatal Medicine

Clinical decision support in the neonatal icu.

Clinical Decision Support (CDS) tools help the healthcare team diagnose, monitor, and treat patients more efficiently and consistently by executing clinical practice guidelines and recommendations. As a result, CDS has a direct impact on the delivery and healthcare outcomes. This review covers the fundamental concepts, as well as the infrastructure needed to create a CDS tool and examples of its use in the neonatal setting. This article also serves as a primer on what to think about when proposing the development of a new CDS tool, or when upgrading an existing one. We also highlight important elements that influence CDS development, such as informatics methodologies, data and device interoperability, and regulation.

The time required for a research finding to be incorporated into clinical practice is often quoted as seventeen years [1]. This gap between what we know and what we do in the practice of medicine stands to gain from the rapid advances being made in clinical informatics [1,2], and neonatal-perinatal medicine is no exception. In this review, we will focus on a subset of clinical informatics, namely clinical decision support ( CDS ). CDS, as defined by Osheroff [3], is “… a process for enhancing health-related decisions and actions with pertinent, organized, clinical knowledge, and patient information to improve health and healthcare delivery. Information recipients can include patients, clinicians, and others involved in patient care delivery; information delivered can include general clinical knowledge and guidance, intelligently processed patient data, or a mixture of both; and information delivery formats can be drawn from a rich palette of options that includes data and order entry facilitators, filtered data displays, reference information, alerts, and others. ”

Though definitions differ, the purpose of CDS is to make it easier for the healthcare team to diagnose, treat, prevent, cure, or mitigate diseases. CDS uses a clinical knowledge base to generate judgments or suggestions that facilitate clinical interventions in order to attain these objectives. While CDS is most commonly associated with interruptive alerts (“pop-ups”), in reality, users engage with CDS in a variety of ways [4,5], including (1) documentation templates (2) data presentation (3) orders/order sets (4) protocols/pathway support (5) just-in-time references (links, calculators, nomograms) and (6) alerts and reminders. CDS-based techniques have tremendous potential to ensure safety by limiting errors, standardizing care practices, ensuring consistency of treatment, and enabling a scalable way to generate new hypotheses and an evidence base. Given the increasing usage of CDS in clinical workflows today, physicians need to understand the underlying structure of CDS tools.

Conceptual framework for a CDS system

Most CDS implementation frameworks incorporate a (1) knowledge-based or non-knowledge-based system, (2) an inference engine, and (3) a user interaction system (Fig. 1). A rule-based, If-then statement, as seen in the following example, is a common, conceptually simple example of a CDS. Phototherapy is advised if bilirubin levels surpass a quantitative threshold for a given postnatal age. The ‘knowledge base’ and 'inferences' here are the usage of phototherapy for hyperbilirubinemia, and the

Mathematical basis for integrating knowledge and non-knowledge-based systems

Developing a successful CDS system using both knowledge and non-knowledge-based approaches hinges on defining an unambiguous mathematical principle that can codify the diagnosis, guideline, or recommendation. To facilitate clarity, this section provides a brief mathematical basis as well as relatable clinical scenarios.

Infrastructure/architecture for CDS implementation

The usability, adaptability, and scalability of a CDS tool, as well as its ability to be implemented effectively, are all directly dependent on the infrastructure and design. CPOE and TPN calculator systems were originally designed as stand-alone units. These technologies were gradually connected with other systems, such as electronic medical records (EMRs) and billing, over time. Data mapping and interchange standards were developed because of the necessity to communicate with other systems.

Overview of CDS in the neonatal setting: knowledge-based systems

A variety of CDS applications have been used while caring for neonates. Broadly, these aids make a diagnosis, to assist with routine care, stratify risk, predict an outcome and optimize treatment. A practical approach to categorize these applications is by the clinical need it serves. CDS has a variety of applications in the neonatal setting including medication management, optimizing nutrition, routine perinatal care including immunizations and hyperbilirubinemia management, risk estimators

Overview of CDS in the neonatal setting: non-knowledge-based systems

There are non-knowledge-based systems that drive CDS. Examples include the use of machine learning based approaches such as artificial neural networks i.e. ANNs. This approach involves complex patterns and statistical analyses to draw conclusions. Machine-learning techniques allow computers to “learn” patterns from “training” datasets and then make predictions based on the inferences drawn from those datasets. One of the more common methods of learning is called “supervised” learning. Here, the

CDS adoption/implementation

The impact of a CDS system directly depends on its adoption. While this is a complex area that heavily depends on the EMR infrastructure and architecture, behavioral attributes of the users, physician champions and local IT support and development costs, this section delves into key principles to remember while embarking on a new implementation or improving an existing CDS.

The right information :

Future of CDS, gaps and opportunities

The burgeoning landscape of CDS has the potential to impact clinical care and bridge the gap between knowledge and practice [78]. Recognizing the scope and to facilitate work in this domain, the American Academy of Pediatrics (AAP)'s Council on Clinical Information Technology (COCIT) promotes development, implementation, and spread of health information technology (HIT) intending to improve children's health. These organized bodies have formulated the pediatric data standards [79] and continue

Devices and drugs have long been regulated by the Food and Drug Administration (FDA). On the other hand, the FDA does not regulate EMR systems. Until now, CDS were exempt from FDA regulations because human intervention was integral to the decision-making process. Recent FDA guidance [88], however, reflects the growing potential of CDS and the scope for regulatory oversight by the FDA, particularly in the area of AI/Machine learning-based software- as -a-medical device [89].

The role for CDS in neonatal-perinatal medicine is growing and it is only going to get more sophisticated and complex. There is a tremendous potential for improving the efficiency and quality of care with the use of CDS. Because the neonates have unique characteristics, special consideration must be given to the development of CDS as “one-size does not fit all”. Finally, CDS is an assistive tool and cannot replace clinical judgement. With the ubiquitous use of CDS, there is a significant risk

Funding sources

Declaration of competing interest.

Unequal care: racial/ethnic disparities in neonatal intensive care delivery

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The dramatic technologic advancements seen in ultrasound have accelerated the growth of point-of-care ultrasound (POCUS) in medicine. Neonatology has lagged behind other pediatric and adult specialties in incorporating POCUS into clinical practice despite there being numerous applications in cardiac and non-cardiac arenas. Widely available training programs are aiding in improving this situation but significantly more structure and orchestration for neonatal POCUS dissemination will be needed to fully actualize the potential for POCUS to augment its widespread clinical application.

Tissue engineering: Relevance to neonatal congenital heart disease

Congenital heart disease (CHD) represents a large clinical burden, representing the most common cause of birth defect-related death in the newborn. The mainstay of treatment for CHD remains palliative surgery using prosthetic vascular grafts and valves. These devices have limited effectiveness in pediatric patients due to thrombosis, infection, limited endothelialization, and a lack of growth potential. Tissue engineering has shown promise in providing new solutions for pediatric CHD patients through the development of tissue engineered vascular grafts, heart patches, and heart valves. In this review, we examine the current surgical treatments for congenital heart disease and the research being conducted to create tissue engineered products for these patients. While much research remains to be done before tissue engineering becomes a mainstay of clinical treatment for CHD patients, developments have been progressing rapidly towards translation of tissue engineering devices to the clinic.

The neonatal liver: Normal development and response to injury and disease

The liver emerges from the ventral foregut endoderm around 3 weeks in human and 1 week in mice after fertilization. The fetal liver works as a hematopoietic organ and then develops functions required for performing various metabolic reactions in late fetal and neonatal periods. In parallel with functional differentiation, the liver establishes three dimensional tissue structures. In particular, establishment of the bile excretion system consisting of bile canaliculi of hepatocytes and bile ducts of cholangiocytes is critical to maintain healthy tissue status. This is because hepatocytes produce bile as they functionally mature, and if allowed to remain within the liver tissue can lead to cytotoxicity. In this review, we focus on epithelial tissue morphogenesis in the perinatal period and cholestatic liver diseases caused by abnormal development of the biliary system.

Stem cells in neonatal diseases: An overview

Preterm birth and its common complications are major causes of infant mortality and long-term morbidity. Despite great advances in understanding the pathogenesis of neonatal diseases and improvements in neonatal intensive care, effective therapies for the prevention or treatment for these conditions are still lacking. Stem cell (SC) therapy is rapidly emerging as a novel therapeutic tool for several diseases of the newborn with encouraging pre-clinical results that hold promise for translation to the bedside. The utility of different types of SCs in neonatal diseases is being explored. SC therapeutic efficacy is closely associated with its secretome-conditioned media and SC-derived extracellular vesicles, and a subsequent paracrine action in response to tissue injuries. In the current review, we summarize the pre-clinical and clinical studies of SCs and its secretome in diverse preterm and term birth-related diseases, thereby providing new insights for future therapies in neonatal medicine.

Practical procedures for the delivery room resuscitation of micropreemies

There are no standardized procedures for the resuscitation of micropreemies but respiratory and circulatory stabilization immediately after birth should be prioritized. Without aggressive support by positive pressure ventilation, establishing effective respiration among micropreemies is not possible. The first step in postnatal stabilization is initiated by positive airway pressure with a bag and mask. Once the heart rate increases above 100 beats/m, intratracheal intubation should be achieved because it is unusual for a micropreemie to breathe spontaneously or by non-invasive respiratory support for a protracted duration. Until further information is available, initial FiO 2 should be between 0.3 and 0.6, and titrated to achieve SpO 2 obtained from healthy term infants for the first 10 min of life. Temperature control of infants is also critical for successful resuscitation and heat-loss minimizing procedures should be used e.g. with insulating bags. After securing the intratracheal tube, the infants should be transferred to the NICU for further procedures, including pulmonary surfactant installation and umbilical cord catheterization. Procedures in a delivery room under a radiant warmer should be limited to the initial resuscitation. In NICUs, the infants should be placed into a closed incubator to maintain high environmental temperature and humidity as well as decrease exposure to intervention and noise. Increased number of staff will also be needed to stabilize the infants further in the NICU. Finally, appropriate equipment (e.g. appropriate sized laryngoscopes) should be made readily available, along with regular practical training and education, whether in person or through SIM courses which are essential for all staff to achieve competence in successful resuscitation of the newborn micropreemie.

Using real-world data in pediatric clinical trials: Lessons learned and future applications in studies of persistent pulmonary hypertension of the newborn

Persistent pulmonary hypertension of the newborn (PPHN) is a complication of term birth, characterized by persistent hypoxemia secondary to failure of normal postnatal reduction in pulmonary vascular resistance, with potential for short- and long-term morbidity and mortality. The primary pharmacologic goal for this condition is reduction of the neonate's elevated pulmonary vascular resistance with inhaled nitric oxide, the only approved treatment option. Various adjunctive, unapproved therapeutics have been trialed with mixed results, likely related to challenges with recruiting the full, intended patient population into clinical studies. Recently, real-world data and subsequent derived evidence have been utilized to improve the efficiency of various pediatric clinical trials. We aim to provide recent perspectives regarding the use of real-world data in the planning and execution of pediatric clinical trials and how this may facilitate more streamlined assessment of future therapeutics for the treatment of PPHN and other neonatal conditions.

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Review article, moral distress in the neonatal intensive care unit: what is it, why it happens, and how we can address it.

Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been reported among bedside nurses in relation to the hierarchy of the medical team. However, it is increasingly recognized that moral distress may exist in different forms than initially described and that healthcare professions outside of nursing experience it. Advances in medical technology have allowed the smallest, sickest neonates to survive. The treatment for critically ill infants is no longer simply limited by the capability of medical technology but also by moral and ethical boundaries of what is right for a given child and family. Shared decision-making and the zone of parental discretion can inform and challenge the medical team to balance the complexities of patient autonomy against harm and suffering. Limited ability to prognosticate and uncertainty in outcomes add to the challenges faced with ethical dilemmas. While this does not necessarily equate to moral distress, subjective views of quality of life and personal values in these situations can lead to moral distress if the plans of care and the validity of each path are not fully explored. Differences in opinions and approaches between members of the medical team can strain relationships and affect each individual differently. It is unclear how the various types of moral distress uniquely impact each profession and their role in the distinctively challenging decisions made in the NICU environment. The purpose of this review is to describe moral distress and the situations that give rise to it in the NICU, ways in which various members of the medical team experience it, how it impacts care delivery, and approaches to address it.

Introduction

American philosopher Martha Nussbaum writes “in all situations of choice, we face a question that I call ‘the obvious question': what shall we do? But sometimes we also face, or should face, a different question, which I call ‘the tragic question:' is any of the alternatives open to us free from serious moral wrongdoing?”( 1 ) In Nussbaum's “tragic question” lies the crux of moral distress. This concept in relation to the field of medicine was first described and defined by Jameton in 1984 as “the psychological distress of being in a situation in which one is constrained from acting on what one knows to be right”( 2 ). Though its first applications were primarily limited to nursing practice, the concept has since been broadened to include other groups of healthcare professionals.

The concept of constraint is central to the essence of the original definition moral distress and is a predominant theme in nursing literature. Moral dilemma or conflict, on the other hand, is more often reported as being experienced by physicians ( 3 ). In circumstances where there is moral conflict, values systems or duties relating to multiple treatment options are incompatible with one another and lead to psychological distress ( 4 ). The provider feels he must act in a way or provide care that is contrary to what he believes is the appropriate care plan ( 5 ). This discrepancy inherently challenges one's ethical principles. As a result, the term ethical confrontation has also been used to describe the associated distress ( 6 ). In an effort to provide the most inclusive review possible, moral constraint, moral conflict, and ethical confrontation will be considered in the discussion of moral distress.

While it is necessary to expand the definition of moral distress beyond the idea of moral constraint as providers are rarely faced with one definitive action on which to make a moral or ethical judgement, there must be a clear distinction between separate albeit related concepts of uncertainty, ethical dilemmas, and moral distress. In the neonatal intensive care unit (NICU), there is seldom absolute assurance in the outcome for a baby with the choices or treatment options available. There is always an element of uncertainty in outcomes that can lend itself to varying degrees of distress when discussing treatment options and decision-making with families. In addition, the NICU is wrought with ethically ambiguous clinical circumstances and complex decisions for a vulnerable population. This innately leads to feelings of internal discord, powerlessness, and uncertainty in physicians, nurses, and other healthcare professionals. This type of uncertainty, while undoubtedly causing stress and discomfort, should not be confused with moral distress. While there are times when these situations lead to distress if values are challenged, the presence of uncertainty or ethical dilemmas do not automatically equate to moral distress.

Frequently, though, decisions regarding end-of-life care and life-sustaining measures provoke moral distress, requiring a closer look at how this ultimately influences the care that is provided. Providers may feel constrained by the uncertainty in these decisions and having to counsel parents with limited information about the possible outcomes. Regardless of the etiology, moral distress can impact patient care and provider longevity ( 5 , 7 – 9 ). If addressed, though, providers can minimize the negative affects while supporting each other and fostering personal growth ( 10 , 11 ). The purpose of this review is to describe the role of moral distress in the NICU, reasons it occurs, how it presents unique challenges to different healthcare professions, and how providers can address it.

The Scope of the Problem

While it is accepted that moral distress is ubiquitous for those who work in healthcare, the true prevalence in the NICU is not well-established ( 12 ). Some historical challenges in assessing the prevalence include a focus in the literature on parental moral distress and adult patients, multiple definitions of moral distress, and an emphasis on the nursing profession ( 13 , 14 ). While moral distress can affect any member of the healthcare team, it is most prevalent in those who provide direct care, such as physicians and nurses. This is likely due to the close relationships formed with patients and their families and the sense of responsibility in providing care ( 15 ). As such, it is increasingly recognized that moral distress can affect any member of the medical team regardless of profession.

For nurses, common causes of moral distress can be patient-focused or nursing-focused ( 16 ). Patient factors largely focus on quality of life, advocacy for the patient, and communication challenges with the families and care team. Nursing factors may include not having a voice within the care team, unclear roles, personal or team conflict, and feeling their integrity is being compromised. Historically, it was thought that the factors leading to moral distress were rooted in paternalistic approaches to medicine where nurses were instructed by physicians to provide care they did not always feel was appropriate ( 5 ).

With newer multidisciplinary care models, a recent focus on understanding healthcare provider moral distress has given more insight to the scope of this issue. In a recent qualitative analysis of attitudes around moral distress of NICU physicians and nurses, it was reported that up to 72% of providers experience moral distress at least once a month ( 10 ). Other studies show similar findings with up to 58% of nurses and physicians reporting specific work related moral distress ( 8 ). While it presents differently for each profession, all members of the medical team are vulnerable to this phenomenon.

Despite the prevalence, there is significant variability around the degree and frequency at which providers experience moral distress or ethical confrontation. This is likely due in part to the characteristics of the individuals included in studies. One study evaluating the impact of experience and knowledge of providers on the frequency of ethical confrontation reported that 35% of experienced NICU nurses and 19% of pediatric or obstetric residents experienced this challenge frequently at work. Overall, in the presence of ethical confrontation, greater experience and a higher level of understanding were associated with lower rates of moral distress. Perhaps with experience providers are able to process and cope with ethically challenging situations in a manner that they do not feel moral constraint. On the other hand, increased knowledge about particular medical situations can open the possibility of experiencing moral distress. Individuals at medical centers that reported lower rates of moral distress around periviable resuscitation were less knowledgeable about outcomes for extremely preterm infants and were less likely to offer resuscitation at the lowest gestational ages. Those with more experience in the consequences of extreme prematurity, especially nursing staff, tend to overestimate poor outcomes and have higher rates of moral distress around offering resuscitation. Overall, the culture of a given center had the greatest impact on levels of moral distress, with the lowest frequencies of moral distress reported at centers that were the most homogenous with respect to language spoken and religious affiliation ( 6 ). This is in contrast to the longstanding notion that moral distress primarily originates from medical team hierarchy and suggests that heterogeneous values and background may contribute more to moral distress than was originally thought. Results of this and similar studies varied considerably with respect to the frequency and intensity of moral distress experienced by varying members of the medical team ( 6 , 8 , 12 , 17 ).

Interestingly despite the challenges associated with moral distress, up to 76% of healthcare professionals feel it is a necessary part of caring for critically ill neonates ( 10 ). They view this feeling as a byproduct of being a caring, compassionate provider who is invested in the well-being of their patient and providing the best possible care. It is also viewed as a sign of innovation and progress in patient care ( 11 ). The internal struggle created by a difficult situation can, at times, be necessary. It challenges providers to acknowledge their own distress and biases in caring for patients and talking with families. This is important because the information communicated to families and the manner in which it is communicated can impact decisions made and ultimately lead to transference of distress ( 5 ). Simply because the medical team and/or parents agree upon a specific treatment course does not guarantee the accuracy or benefit of the treatment. Without the challenge of differing opinions, the ethical, moral, and medical appropriateness of such a decision goes unscrutinized ( 11 ). Discussions that emerge from moral distress promote exploration of multiple courses of action and encourage the most informed decision possible.

While providers feel that moral distress is an innate part of caring for NICU patients, it is accompanied by some degree of burden. Physician trainees in the NICU reported, through longitudinal narrative writing, that they experienced conflict in multiple situations that caused them distress and led them to question their own morals ( 18 ). The unique position of trainees in the medical team hierarchy places them at risk for constraint distress. They may feel obligated to provide care they do not agree with and are unable to voice these disagreements due to lack of confidence, fear of unfavorable evaluation, or concern for retaliation. As a result, they may feel numb and cope through detachment and desensitization, which can lead to compassion fatigue and burnout over time ( 18 , 19 ). The emotional toll, which transcends beyond trainees, can lead to disengagement and ultimately effect patient care with avoidance behaviors amongst staff, increase length of patients' hospital stays, adverse patient outcomes, and increased pain levels in patients ( 12 , 20 ). In addition, moral distress can contribute to increased burnout, decreased job retention by the healthcare provider, decreased staff retention by institutions, career transitions, threatened moral integrity, and a sense of failure to perform a professional and moral duty ( 5 , 7 – 9 ). In order to provide optimal patient care and a safe environment for providers to thrive, when moral distress is prevalent providers are faced with a balancing act of minimizing the negative impact and leveraging the potential for progress ( 9 ).

Why is Moral Distress so Prevalent in the Nicu?

Many factors can contribute to moral distress. Intensive care settings, staffing shortages, the need for timeliness/efficiency, and situations involving perceived futile care or different perspectives on end-of-life decisions place individuals at higher risk for moral distress ( 12 ). Structural aspects of the NICU, including lack of a consistent care team, poor communication, and understaffing lead to moral distress due to feelings of providing substandard care ( 21 ). Beyond the structure itself, variation in providers' own views and values within an institution can lead to reports of greater moral distress ( 6 ). Perhaps there are factors innate to the providers themselves and the culture of the institution that play a role in the presence of moral distress. When providers on the same care team have different values and moral compasses, there is a higher likelihood of some team members feeling moral constraint and subsequently moral distress based on the care provided.

The vulnerability of the NICU population, combined with the need for decision-making by proxy further compounds this risk. In the face of advancing medical knowledge and increasing reliance on technology and life sustaining measures, parents and healthcare providers struggle to find balance and determine what is truly in the best interest of the child ( 22 ). The frequency of end-of-life situations and the complex nature of NICU care lends itself to moral distress. One study found that a higher number of deaths and issues surrounding end-of-life care and resuscitations are associated with the highest levels of moral distress ( 8 , 17 ). Interactions between team members and with parents and family can ease or amplify these feelings ( 17 ). Similarly, the degree to which medical team members agree with one another and with the parents' decisions can influence perceptions of constraint or control. It is far more common for healthcare providers to feel they are “doing too much” rather than too little. While this can be seen as an ethical dilemma, the resulting concern for inflicting undue harm and suffering results in a greater degree of moral distress ( 23 ). Interestingly, while physicians were more likely to disagree with the level of care a patient was receiving than nurses were, their reported levels of moral distress were lower than those of nurses. This may relate to the notion that increased education and experience with these challenging clinical scenarios allows physicians to better delineate ethical questions from moral distress. It also may relate to the fact that nurses are the individuals actively carry out the care plan.

While many factors contribute to how decisions are made for a vulnerable patient who cannot convey their own wishes, as with a neonate, there are external constraints beyond provider judgement that can impact and alter the care plan. Some factors that influence decisions include limitations put forth by laws and regulations, institutional policy, parental wishes and views of quality of life, hierarchy of the healthcare system, or ethics committee rulings. If these factors are in opposition to provider beliefs, it can lead to significant moral distress ( 25 ). Similarly, if there is a perception that medical interventions are causing unnecessary suffering, it can lead to feelings of helplessness ( 26 ).

Just as important to consider are factors internal and innate to the provider. If there is uncertainty or doubt about the diagnosis, prognosis, or most effective treatment course, it can lead to feelings of powerlessness, fear, lack of knowledge, or hesitation to advocate for their patient ( 8 ). These internal constraints are commonly described in the literature but less frequently recognized as sources of moral distress ( 9 , 13 , 27 , 28 ). While some have advocated to expand the definition of moral distress to encompass situations beyond where there is moral constraint, these circumstances of uncertainty, even with a broader definition of moral distress are more appropriately described as moral sensitivity or ambiguity rather than moral distress ( 3 , 4 ).

While moral distress can arise from any complex situation, most common scenarios that give rise to moral distress in the NICU involve end-of-life care, medical utility and futility, periviability, and disagreements about care plans ( 24 ). Each of these challenging clinical scenarios, which are described in greater detail below, involve medically complex decision-making.

End-Of-Life-Care and Palliative Care

There are over 15,000 neonatal deaths each year in the United States and the majority of these occur in the NICU ( 29 ). As a result, end-of-life care is routinely tasked to providers who take care of babies in an intensive care setting. Transitions to end-of-life care are never easy and are fraught with grief and uncertainties at a time of heightened emotions for all involved. More than 80% of the time, deaths in the NICU are preceded by a decision to limit, withdraw, or withhold life-sustaining treatments ( 30 ). This requires difficult conversations about the prognosis and multiple treatment options and approaches to care available. Once a decision to redirect care is made or it is evident that a patient is dying despite invasive medical interventions, subsequent care can greatly influence parental coping and medical team attitudes surrounding the death.

How providers define or personally view aggressive care, redirection of care, and the reasons for pursuing these care paths can contribute to feelings of moral distress. Singh et al. claim that when an actively dying patient is extubated so the mother may hold the infant as he or she passes, it is ethically different than compassionate withdrawal of care in the setting of a severe neurologic insult with likely poor long-term outcomes. The study also noted that timing of death did not significantly differ for infants who received full support vs. those for whom care was withdrawn ( 31 ). Both resulted in the infant's passing, but perhaps, the authors suggest, the former situation offers a clearer assessment of futility and allows moral judgement of providers to align with the actions taken.

The timing of when options such comfort measures, redirection of care, or pursuing invasive medical interventions are discussed is important as it can also impact feelings of moral distress. It may feel different to parents or healthcare providers to withhold care and refrain from initiating a particular care path than to withdraw or redirect care after invasive interventions are initiated. With increasing medical capabilities to care for the tiniest, sickest infants, trials of therapy are not uncommon. Parents may need time to process the information and prognosis, especially with unanticipated events or diagnoses and providers must balance the need to minimize suffering to the patient and utilize resources appropriately. Parents and providers utilize a shared decision-making approach to determine the boundaries of care plans, based not only on prognostic factors, but parental values and goals of care ( 32 ). Concern for prolonging suffering while awaiting parental decisions may intensify the medical team's feelings of failure to prevent undue suffering or harm to the patient. Likewise, due to provider discomfort with having these difficult conversations or their own perceptions about the appropriateness of such care plans, discussions often occur late in the hospital course. This can lead to distress and constraint of other providers or the families ( 32 ). Moral distress may result from the choice to provide invasive medical interventions, withhold therapies, or withdraw invasive medical interventions especially in circumstances in which there is little data to drive the decision that is in opposition to what the provider believes to be morally right.

Consider a former premature child corrected past term with bronchopulmonary dysplasia who thrives on continuous positive airway pressure and awaits parental decision regarding a tracheostomy to aid in development and facilitate transition to home. Despite declining redirection of care when the baby was critically ill, parents have consistently expressed the desire for an acceptable quality of life over quantity of life. In their eyes, dependence on any medical technology long-term is not an acceptable quality of life. They are increasingly distressed and often in disagreement with the medical team over the amount of invasive care the child is receiving. They express they would not want their child to be dependent on a tracheostomy or gastrointestinal tube feeds for an extended period of time. Ultimately, they elect to redirect care and remove the continuous positive airway pressure mask. The baby dies over the course of a several days. Some of the medical team expresses anguish over withdrawing non-invasive support on a baby with a favorable neurodevelopmental prognosis. They are faced with the constraint of parental desires and request to redirect care despite their own beliefs and views. In the zone of parental discretion, one may choose to honor such a request with appropriate counseling and risk assessment. While there is a level of moral judgement that this treatment course exposes the child to risk and ultimately death, the decision of the parents does not constitute medical neglect as there are also significant risks and burdens associated with the alternate care paths. A child with a tracheostomy who is ventilator dependent requires around-the-clock care and vigilance. They may have significant medical complications including death related to the tracheostomy and long-term ventilator support. In this challenging scenario, the involvement of palliative care and ethics is important. Through their involvement, the care team can better understand the complex factors that went in to the difficult decision made by the parents. This also allows for an avenue for staff to express their concerns, better understand the ethical questions at hand, and process their personal views in relation to the case.

Medical Utility and Futility

Consideration of medical futility when pursuing life-sustaining measures is important but difficult to apply to a clinical setting. Given the present degree of uncertainty in neonatal outcomes and continual advances in therapies and medical technology available, it is challenging to determine if interventions being provided have a reasonable likelihood of success and what defines success for any particular baby/family. Futility can be defined as a treatment that fails to provide discernable benefit ( 33 ). It innately requires delineation of goals as it is a term relative to the desired outcome. This is a challenging concept as many interventions provide some benefit and invasive interventions may allow an individual to live for a period of time. Due to the increasing use of technology and medical innovations, providers may feel that care is at times overly aggressive, without clear or definitive benefit. This can lead to distress and concern that they are causing undue suffering to their patient. It is reported that over half of attending neonatologists and over one-third of nurses have provided care they view as “overly burdensome.” Similarly, 80% of physicians and 69% of nurses felt they had saved a child who “should not be saved,” despite personal and moral objections to doing so ( 34 ). The decision of whether or not to continue aggressive care in the setting of a poor prognosis can be morally distressing. In particular, neurodevelopmental outcomes and the impact on long-term perceived quality of life is of great concern when weighing benefit against risk. Simply enabling survival is no longer the goal. A delicate balance between preserved quality of life, incorporating family goals, and minimizing suffering complicates the decision of the most appropriate treatment plan.

Quality of life is inherently personal as what is considered acceptable for one person may not be for another. While physicians overwhelmingly support parental involvement in decisions regarding end-of-life and palliative care, there is a tendency to anchor in the statistical majority with respect to outcomes ( 35 ). This can greatly influence how healthcare providers counsel a family and the degree of moral distress following a parental decision that does not align with their own views. In these situations, providers are asking themselves if a life with profound disabilities is a life worth living and if providing life-sustaining measures is worth the cost ( 36 ). While weighing these costs, they view what that life could potentially look like. Physicians tend to place a much higher value on cognitive function and independence than families do ( 37 ). This is likely, in part, due to the limited context and surroundings in which they interact with children with severe impairments. It can cause moral distress when a provider is challenged to accept different values and provide balanced counseling and at times provide interventions with goals in opposition to their personal values.

Regardless of the underlying diagnosis, when the medical team is asked to provide care that will extend a child's life, they often do so with the best interest of the baby in mind. However, when this is in the context of a child who will have a profound cognitive disability, the best interest standard often comes in to question ( 38 ). This is largely based on weighing the burdens and benefits of various treatment pathways for the child in the context of their family. While providers may have personal views, they cannot presume to know if the child would prefer death to a life with profound impairments especially when the child would have no other comparison ( 39 ). Often times the treatments available will extend the child's life and potentially facilitate leaving a hospital setting. The interventions themselves do not place the child at risk for imminent, preventable harm. As a result, it is difficult for providers to use ethical principles of best interest and non-maleficence as justification for advocating against such interventions. While there will likely be burdens for the child and family with the pursuit of invasive interventions, some feel these burdens are miniscule in comparison to the life the child is able to have and the potential relationship the baby is able to develop with their family and surroundings ( 40 ). With this notion, some advocate for providers to focus on the moral value of that relationship and the capacity for a caring relationship as opposed to neurodevelopmental outcomes when determining if invasive interventions are appropriate. The relational potential for which some advocate is morally meaningful regardless of others ability to see the reciprocity of the relationship ( 40 ). It is only with the help of the providers that these potentials can be realized. By acknowledging the significance of this relationship, providers can support their patients' families and potentially feel more comfortable with the interventions they are being asked to provide.

Often, providers find themselves in the zone of parental discretion when the risk of an option does not clearly outweigh the benefit. In such circumstances, parents are assumed to have their child's best interest at heart and know what is best for their family. As a result they are encouraged to be the decision-makers for their child unless the decision will cause express harm ( 41 ). When parental decisions ultimately differ from what providers believe is the right or most appropriate treatment course, either professionally or personally, the uncertainty of the outcome coupled with constraint of parental preference may produce profound moral distress for providers ( 42 ). This can be exacerbated by significantly differing beliefs and views on which these decisions are based. If a physician or nurse experiences moral distress as a result of disagreement with parental wishes, communication may become filtered through their own views and values, such that it offers more or less hope for achievement of parental goals than truly exists. This has been described as “ethically indefensible” and amounting to “deception” ( 43 ).

Consider a child with a long and arduous clinical course fraught with multiple bouts of severe clinical instability. He has undergone several invasive surgical procedures with refractory hypotension and hypoxia leading to irreversible end-organ damage. There has been no progress for months. Despite frequent counseling on the poor prognosis and lack of ability to wean ventilator support, parents continue to advocate for interventions with the goal of extending his life. They request that the medical team minimize discussions around redirection of care as they have expressed their wishes for their child. Physicians rounding on the child find themselves at a loss for contributions to his care plan that will lead to improvement in his clinical status and bedside nurses feel increasingly distressed by the invasive care they must provide. For months, he remains on the ventilator with no evidence of interacting with his surroundings in a meaningful or purposeful manner. When parents are available, they participate in his care. Otherwise, the nursing staff are his primary care-takers. He develops an infection and acutely decompensates. Despite interventions to treat the infection, he ultimately dies. Staff struggled with continuing to provide invasive medical care. Initially there was great distress over the perception that he was suffering. After discussions with the ethics committee and a better understanding of the degree of his neurological injury and appropriate administration of medications, most providers believed inventions were prolonging a short life in the hospital but no longer felt he was suffering. Ultimately, some reported less moral distress after understanding that he was not suffering, that parents needed more time with him, and that his parents needed to see him die under those circumstances to feel that they advocated for him and gave him every chance to survive.

Periviability

Periviable deliveries and resuscitation remain a controversial topic. Different institutions have various thresholds for resuscitation based on patient-specific factors, local data and outcomes, physician attitudes and maternal characteristics ( 44 ). Population-based estimation of outcomes lacks the precision necessary to make decisions on an individual level. The extreme uncertainty and lack of clear evidence or definitive clinical guidelines on periviable resuscitation can make counseling parents and caregivers challenging. In addition, knowledge and experience of the medical team members are recognized as factors that influence providers' personal views and greatly impact thresholds for resuscitation, estimation of mortality risk, and assessment of long-term outcomes they convey to parents ( 6 ).

Discussions around resuscitation often occur at a time with high emotions and stress where outcomes are uncertain and decisions are often made quickly. Providers are tasked with guiding parents through the recognition of their own values while providing available evidence to aid in a shared decision-making approach to care. However, the decisions that are ultimately made can remain a moral and ethical challenge for providers when their personal views and values are in opposition to the care plan they are developing ( 45 ). The vast majority of the time, neonatologists and parents are able to come to a mutually agreed upon course of action through discussion and goal sharing. In fact, in a cross-sectional study surveying neonatologists about their preferences surrounding periviable resuscitation, physicians chose options that aligned with parental wishes 66% percent of the time, as compared with options supported by institutional guidelines just 34% of the time ( 46 ). The agreeable nature of acting in accordance with parental wishes supports previous findings that understanding parental values and aiding in developing a care plan based on those values results in a lower frequency of moral distress. Further, defaulting to parental wishes and realizing there is no clear right or wrong option despite variation in personal views could partially remove the burden of decision-making from the neonatologist and reduce the moral dilemma he or she would otherwise face. There may also be an element of constraint from institutional guidelines that parental preference helps to override. Rather than strict criteria, guidelines may incorporate parental discretion and offer options that can be tailored to a particular patient. In this way, uncertainty is acknowledged, and shared decision-making can proceed with less impact from medical team bias or distress. A better understanding of the complexities involved in prognostication and decision-making can foster discussions and address discomfort or questions individuals may have ( 45 ).

Conflict and Disagreement

While differing views and opinions can result in discussions that encourage progress and novel ideas, it can also serve as a nidus for moral distress and residue that degrades the relationship between members of the care team and with the family ( 13 , 47 ). Differences in the application of the zone of parental discretion may lend itself to variability in the amount of parental latitude given in determining interventions and treatment goals. Physicians may be viewed as overindulgent to seemingly unreasonable requests or too inflexible in incorporating parental perspectives. Physicians may agree to parents' wishes if those wishes do not constitute medical neglect while nurses feel distressed at having to carry out interventions that they feel cause more harm than good ( 48 ). Consultants may struggle to find helpful recommendations for a case they feel is futile. Different teams caring for the same patient may have opposing recommendations that can erode confidence and trust of the family and care team ( 13 , 47 , 49 ). In these situations, achievement of consensus despite initial disagreement may ultimately allow parents and caregivers to justify their decisions internally and serve to assuage discomfort associated with such ethical dilemmas.

Addressing Moral Distress

As moral distress can have a significant impact on providers, patients, their families, and the care management plans that are derived, it is imperative that providers go beyond recognizing moral distress and develop effective ways to address it ( 50 ). This can lead to improved moral resilience, the capacity to tolerate moral distress and effectively function while mitigating the negative effects ( 49 ). While improving moral resilience is greatly dependent upon an individual's internal resources and ability to navigate ethically challenging situations, mindful and intentional reflection of the situation is pertinent to help providers process their emotions. There needs to be training around emotional support and coping for healthcare providers ( 18 ).

One of the most important initial steps is recognizing moral subjectivity. This can promote open discussions about the different views and perspectives of others that are driving their opinions and lead to a feeling of comradery. As a result, a shared sense of burden and responsibility for the decisions that are made can develop ( 5 ). Specific to end-of-life settings, studies suggest that higher levels of emotional intelligence may temper the negative effects of moral distress ( 20 ). By being able to recognize and reflect on emotions and incorporate them with cognitive reasoning, one can more productively manage and cope with morally challenging situations rather than having them lead to moral distress. Ultimately, this leads to improved interactions with patients and decreased levels of stress and anxiety ( 20 ). An important factor in this practice is improved and effective communication skills amongst all team members.

There have been many suggestions to support recognizing and addressing moral distress. Included in these suggestions are workshops, debriefings, ethics training, and practices such as reflective writing ( 20 , 51 , 52 ). These methods all have a uniting theme of bringing to the forefront the emotional impact of various situations and events. Writing, specifically, tasks an individual with critically examining the experience as a way of processing and coping. Narrative medicine can aid with coping and enhance physician empathy ( 18 ). While studies in other avenues have shown a positive effect in this type of interventions, a small study for NICU nurses in Iran failed to show a difference in moral distress intensity or frequency after 8 weeks of narrative writing ( 53 ). This may suggest that there are more complex factors than the act of writing about traumatic events that must occur in order for the practice to be effective. Beyond these measures of personal reflections, the way in which an individual approachs conversations and arrives at or navigates through challenging decisions can have a positive impact on moral distress.

Counseling and Decision-Making

Since the early 2000's, decision-making in neonatology has seen a shift in practice from providing information to parents and recommending a course of treatment based on evidence alone to a shared decision-making process. In this collaborative approach, factors such as parental values, emotions, trust in the care being provided, life experiences, goals of care, and other personal considerations are taken in to account when developing a care plan ( 54 ). The medical team and family must balance the often competing principles of autonomy, beneficence, and non-maleficence. This model of care allows for various stakeholders to express their personal views and values that help them determine a care plan. Values that predominate among healthcare professionals are intertwined with their own personal values. They often emphasize concepts such as patient dignity, quality of care, integrity, a duty to “do no harm,” and alleviate suffering. There are times when their personal views of quality of life vastly differ from that of the parents. As a result, while a shared decision-making approach ensures that all members invested in the care of the baby have input, there are still situations where providers enact a treatment plan they do not feel is optimal for their patient ( 5 ). The highest level of distress reported by nurses occurs when following family's wishes when the medical team perceived they were doing “too much” ( 55 ). Regardless of the providers' personal views, through the processes of shared decisions-making, he can better understand the views and values of the family. Through recognizing important factors for them in determining quality of life or an appropriate care plan, the provider can make recommendations that align with those views rather than their own personal views. This understanding and approach to navigating goals of care or treatment plans can lead to confidence that the care plan established is a collaborative approach to care that is most appropriate for the individual baby and family regardless of the providers' personal views. As a result, this approach to counseling and decision-making can lead to decreased moral distress.

Continuity of Care

Inherent in successful shared decision-making is the cultivation of a relationship between the neonatologist, other members of the medical team, the patient, and their parents or other surrogate decision makers. Due to the nature of prematurity and critical illness in newborns, it is not uncommon for a child and their family to encounter multiple care teams throughout their NICU stay, with physician teams rotating approximately every 1–4 weeks. While nursing care teams are typically more consistent, they also involve some degree of variability. Though the same team members may come and go throughout the hospitalization, they participate in different parts of a given patient's care. This can make it difficult for parents to develop consistent relationships that foster trust and an understanding of values.

Despite efforts at standardization and adherence to evidence-based guidelines, there are often differences in the care provided due to the relative paucity of definitive data and algorithms for treatment in neonates. Constraint distress may be experienced due to a plan set in place by another physician or care team and in turn, bedside nurses or other staff members may be faced with the dilemma of aligning with the changing recommendations of the medical team while advocating for frustrated parents and original care plans ( 5 , 16 ). Their personal views on the best course of action may also make counseling families or communicating with other staff more difficult, thus impacting overall the team's decision-making ability.

Watching a patient suffer due to poor communication and lack of continuity of care leads to high levels of self-reported moral distress ( 14 , 23 , 49 ). It is important with the multiple hand-offs and transitions in care that there are detailed conversations between care providers about the conversations that have taken place and that the unit has a collaborative approach to care. This will allow the providers to better understand how families make decisions, what information has been conveyed to them, and what the expectations for the care plan and treatment options are. Standardizing this approach can lead to seamless care despite changing providers. All providers should be engaged in methods to promote teamwork and to work collaboratively. It is important to ensure all members of the multidisciplinary team have an opportunity to share their thoughts and information to truly promote an environment of shared understanding and community ( 8 ). There should be clear methods in place to address conflict or disagreements that may arise among team members ( 12 ). It will also allow the family to feel more confident that the providers know their child and decreases the chances of abrupt changes in the care plan.

Education and Communication

An integrative review examining moral distress in NICU nurses around palliative care found that experiences of moral distress were variable ( 56 ). Factors associated with a higher level of moral distress included conflicts among care providers, lack of continuity of care, perceived futile care, false hope, and fluctuation in patients' clinical status. In response to recognizing moral distress, many centers have developed formal and informal educational opportunities to attempt to address causes of distress ( 18 ). While the etiology of moral distress appear multifactorial, certain interventions appear to alleviate moral distress. Education around end-of-life care, formation of a care team with the focus of establishing goals of care, and a protocol with a clear plan to address the dying process tend to decrease moral distress.

One center developed comprehensive educational interventions with modules to address nursing moral distress around end-of-life care ( 57 ). Overall comfort level with dying patients increased after participating in the educational program. After the educational sessions, nurses reported less compassion fatigue and noted that learning about self-care was important. They also benefited significantly from educations around legal and ethical issues surrounding neonatal end-of-life care. The importance of communication and the many emotions surrounding these situations was also highlighted. Through educational sessions, the importance of the desire for support was recognized. Regardless of the format, having avenues to discuss situations and allow staff to feel supported and heard is critical. Providing support through shared experience is beneficial and a way to foster meaningful relationships ( 18 ).

Specific training around communication and environments conducive to meetings and support for staff beyond traditional debriefings is crucial ( 12 ). It is known that that those who are less informed about outcomes may make a moral judgement based on misinformation or lack of information and experience moral distress as a result of treatment decisions that challenge their judgment ( 6 ). Clear and consistent communication with all members of the team regarding rationale, expected outcomes and options provided to the parents may help to alleviate distress that occurs as a result of simply “not knowing.” To facilitate communications in an educational environment, some centers have introduced rounds or designated sessions for multidisciplinary teams to discuss challenging patients. One center described their approach to a multidisciplinary conference with the goal of promoting communication and consensus building ( 58 ). In a structured setting, all members of the NICU staff were invited to attend a discussion about a patient where there was distress or concerns related to the patient care. Input is sought from all team members as well as invited ethicists with the hope of navigating through the complex issues with the goal of improving communication and collaboration to reach a consensus about the case at hand. It appeared that participants felt these conferences took place later than they should in the course of care. Comfort with expressing distress directly correlated to the perceived support of the institution. While communication was cited as a cause of distress, the sessions were attended predominately by those who already felt comfortable recognizing and addressing distress. As a result it was suggested that with education around communication there may be an improved comfort level with crucial conversations that would lead to improved comfort in attending such sessions with the intent of improving patient care and decreasing moral distress.

Role of Ethics Consultation

With the frequency of ethically challenging situations in the NICU, the utilization of ethics consultations is common. These consultations can serve as forum to promote discussions on moral subjectivity and clarifying ethical challenges that arise ( 5 , 59 ). This can aid in supporting moral resilience and alleviating compassion fatigue. Recommendations may vary from one institution to the other and laws vary from state to state. Lack of futility clauses and vague language regarding definitions of benefit and harm further complicate many complex clinical situations. In most cases, physicians and nurses feel the ethics committee role is to give advice and help promote a better understanding of the situation. In cases where parents and physicians disagree despite open communication an education, team members feel the ethics committee should make the decision on the most appropriate care plan. A small minority of providers would allow courts and the legal system to make the final decision in the case of clear disagreement ( 60 ).

Without clear disagreement, despite moral dilemma physicians and nurses would rather be involved with making the decisions. An ethics committee can help facilitate thoughtful discussions and open communication to better understand the issues that are leading to distress. Through these discussions, the important distinction between an ethical dilemma and moral distress can be made. There can be multiple treatment options that are acceptable while personal views on the most appropriate path may differ. By allowing thoughtful discussions about these options and why they are ethically acceptable, providers may have less moral distress as they have a better understanding in the complexity behind such decisions and also have an opportunity to express their views and concerns ( 49 ). Beyond that, ethics committees can help the team navigate communication with parents while understanding that the parents have ultimate responsibility of acting as moral agents for their baby ( 61 ). It is only with the recognition of the moral and ethical dilemmas unique to the NICU that organizational support for establishing ethical framework to support complex decision-making can truly come to fruition ( 62 ). With this support and structure in place, there can be improved quality of care through less conflict and distress amongst team members.

Moral distress is far more prevalent than even the current literature describes. It transcends healthcare professions and affects the entire healthcare team, the family, and most importantly the patient. While historically described as a negative emotion resulting from poor communication, discrepant values, and paternalistic hierarchy, it can be a source of growth and progress if leveraged correctly. However, if left unaddressed, it can contribute to burnout, job dissatisfaction and, ultimately, a lower quality of care provided.

The multitude of circumstances that can lead to moral distress require a thoughtful and tailored approach to patient care. Ethics rounds, debriefing after deaths, codes, or other challenging situations, and exceptional communication among team members and with caregivers are the cornerstones of minimizing the negative impact of moral distress while leveraging its role in progress. Understanding that different team members will feel moral distress to varying degrees is imperative. Offering options, such as the choice to abstain from care with which they disagree, may be one way to combat constraint in those who are most at risk to feel powerless or “without a voice.” Simulation or case-based discussion can provoke thought and acknowledgment of one's own feelings in various situations so that providers feel confident in their approach to care. In addition, not delaying difficult conversations with parents can minimize the trauma associated with aggressive medical interventions or end-of-life care and will encourage open, deliberate communication. This will allow providers and families to feel that they made the most informed decision.

Most importantly, perhaps, is the recognition of moral distress as an entity, its impact on care provided, and helping staff identify its presence. By acknowledging the influence and implications of moral distress, providers are better equipped to minimize the negative effects and provide safer, more resilient care. Utilization of behavioral medicine resources, team discussions, mentorship and buddy systems for emotional and moral support can encourage self-awareness and a focus on addressing moral distress. Fostering a culture of openness, ethical sincerity and support for those who are struggling can reduce consequences such as burnout and job dissatisfaction. Communication with team members can offer insight in to other perspectives and guide future actions. Guidance from seasoned mentors and reassurance from colleagues regarding the normalcy of moral distress and advice for managing it provides the tools for personal and professional growth.

The impact of moral distress on decisions made in the NICU is under-recognized and represents a potential area for improvement in communication among staff members and with parents. Future areas of investigation should focus on the zone of parental discretion and its boundaries. In addition, given that physicians are most often involved in the medical decision-making for a child, further research on optimal interventions for moral distress tailored to address the specific challenges of different professions would aid in providing additional tools to combat moral distress.

Author Contributions

MM conceptualized and drafted the initial manuscript. DC aided in conceptualizing, designing, and editing the manuscript. All authors approved the final manuscript as submitted.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Abbreviations

NICU, Neonatal Intensive Care Unit.

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Keywords: moral distress, decision-making, neonatal intensive care, ethical confrontation, periviability, end-of-life care, medical futility

Citation: Mills M and Cortezzo DE (2020) Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It. Front. Pediatr. 8:581. doi: 10.3389/fped.2020.00581

Received: 19 June 2020; Accepted: 07 August 2020; Published: 10 September 2020.

Copyright © 2020 Mills and Cortezzo. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Manisha Mills, Manisha.mills@cchmc.org

This article is part of the Research Topic

Perinatal Palliative Care

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The American Journal of Bioethics

Postponed Withholding: Balanced Decision-Making at the Margins of Viability

INTRODUCTION

Making decisions in the gray zone, shared decision-making: empowering parents, toward a balanced decision-making process: postponed withholding.

Acknowledgements

Additional information

Guest editorials.

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has gained ground. However, the need to start immediate life support and the ensuing difficulty of withdrawing treatment stands in tension with the possibility of a fair decision-making process. Both the parental “instinct of saving” and “withdrawal resistance” involved can preclude shared decision-making. To help health care personnel and empower parents, we propose a novel approach labeled “postponed withholding.” In the absence of a prenatal advance directive, life support is started at birth, followed by planned redirection to palliative care after one week, unless parents, after a thorough counseling process, actively ask for continued life support. Despite the emotional challenges, this approach can facilitate ethically balanced decision-making processes in the gray zone.

Many families owe a debt of gratitude to neonatal intensive care units (NICUs) for their baby’s survival and good health. Outcomes for premature babies continue to improve, in terms of both survival and short-term morbidity (Kaempf et al. Citation 2021 ; Rysavy et al. Citation 2020 ). Nevertheless, the risks of mortality and disability for premature babies are persistent and significant. This means that at birth, a dilemma arises on whether to start life support. In many cases, it is unclear what constitutes the best approach, both from a medical and an ethical perspective.

Being more than a medical question, there are strong reasons to involve parents in the decision-making process. In our experience, few parents are ready to take decisive part in decisions when facing imminent periviable birth. And, once life support is started, it may be hard to withdraw (Chung et al. Citation 2016 ; Feltman, Du, and Leuthner Citation 2012 ). Given this situation, how can we facilitate real and balanced shared decision-making in the NICU?

In this paper, we put forward the approach of “postponed withholding” (PPWH) to address this question. The basic idea of this approach is, firstly, to regard the provision of life support at birth as a non-decision. Secondly, after a thorough counseling process within a shared decision-making model, further provision of life support should depend on active parental request for continuation. We believe that this change in the NICU choice architecture will contribute to empowering parents and enable them to act based on their situation and values.

We start by introducing the basis of the medical and ethical uncertainty in decision-making at the margins of viability, and the resulting “gray zone.” We move on to discuss the challenges of shared decision-making, before we introduce the PPWH-approach to address these challenges. Finally, we proceed to a critical discussion of our proposal. To illustrate the dilemmas we are facing, we will follow a hypothetical family and their baby “Mina” in the NICU.

The Gray Zone

Helen came to the hospital with her husband Peter, presenting symptoms of threatened preterm labor at GA 23 + 4 weeks. She had become pregnant while on contraceptives, and had 3 children aged 3, 5 and 9 years. 3 hours later, Mina was born. Due to a rapid delivery, there was no possibility for proper prenatal counseling.

Advances in medical technology and improved practice over the last decades have permitted survival of extremely immature babies. Survival has been published as early as 21 weeks of gestation, improving rapidly from around 7% of live births at 22 weeks to 90% at 27 weeks (Myrhaug et al. Citation 2019 ). Most ex-preemies live good lives (Saigal Citation 2016 ), but infants born before 26 weeks of gestation still present high mortality and significant long-term complications, including impaired neurodevelopmental outcome and psychological and behavioral problems (Domellof et al. Citation 2020 ; Myrhaug et al. Citation 2019 ; O’Reilly et al. Citation 2020 ).

The risk for adverse outcomes is strongly correlated with lower gestational age, but multiple other factors can also influence outcome significantly Footnote 1 . Recent models show huge variation in estimated probability of survival amongst actively treated infants, ranging from less than 10% to more than 60% for infants born at both 22 and 23 weeks of gestation (Rysavy et al. Citation 2020 ). Mina’s individual prognosis is impossible to predict with certainty and will continue to be uncertain for a long time: no specific assessment during the first weeks or months has shown ability to accurately predict the outcome for a given individual survivor. The outcome for each infant and family will remain essentially uncertain for years, and decision-making will continue to be ethically challenging (Hintz et al. Citation 2018 ; Wong et al. Citation 2016 ).

Extremely preterm infants are dependent on initial life-support to survive, and intensive care with technological support is required for months, in some cases for years, having a huge impact on family life. Due to the considerable physical, emotional, relational and financial risks for both the infant and the family, the decision of whether to start life support must respond to both clinical and ethical concerns, and a certain “gray zone” at the margins of viability seems unavoidable (Gillam et al. Citation 2017 ; Leuthner Citation 2014 ).

How, and by whom, should the gray zone be defined? The boundaries of the gray zone will depend on the current state of medical technology and the resources available. However, gray zone limits also depend on cultural, social and religious factors. This is reflected in the varying boundaries of the gray zone between high-income countries, as defined by when medical life support is either considered mandatory (upper limit of gray zone) or not recommended (lower limit). In Europe, there is little consensus on how active interventions after birth at 22–25 weeks of gestation should be managed (Gallagher et al. Citation 2014 ).

In recent years, the use of gestational age to define the gray zone has been criticized, and newly published guidelines and frameworks from Canada and the UK have switched to prognosis-based limits: risk of death and major disability (Lemyre et al. Citation 2016 ; Mactier et al. Citation 2020 ). However, this has not solved the dilemma of how to define the gray zone: we still need to agree on how much risk should define the lower and upper limits. In the Canadian guideline, the upper limit (where intensive care is considered to be in the best interest of the infant, and hence, standard of care) is defined as less than 25% risk of death or survival with unacceptable severe impairment, whereas in the BAPM framework from the UK, less than 50% risk would lead to the same conclusion. How we define the exact limits of the gray zone thus comes down to a value-based question.

From an ethical point of view, the child’s best interest guides decisions in pediatrics (Lantos Citation 2018 ), and this is also the most important criterion for extremely preterm infants (Cavolo et al. Citation 2020 ). However, the “best interest” of an infant born at the margins of viability can be extremely difficult to determine, and will therefore depend on perceptions and values of the proxy decision-makers. How can we weigh up the pros and cons for Mina? In order to survive, she will need months of intensive care and be exposed to many painful procedures, and we do not know how her quality of life will eventually turn out. On the other hand, it is difficult to claim that death is clearly in her best interest (Brunkhorst, Weiner, and Lantos Citation 2014 ). Another challenge is determining how much weight we should give to the interests of others, like the family (Leuthner Citation 2014 ).

Is periviable birth, where the infant is suddenly “in the wrong place at the wrong time,” in a different ethical situation than other emergencies later in pregnancy and childhood? Some authors argue that preterm infants are systematically discriminated due to what is seen as the equivocal use of a lower moral status (Janvier, Bauer, and Lantos Citation 2007 ), while others question whether we are taking over creation rather than saving babies at the margins of viability (Rieder Citation 2017 ). This is ethically relevant, as “saving reasons” are symmetrical: benefits and harms are weighted equally, while “creative reasons” are asymmetrical: The badness of future life counts against creating that life, whereas the goodness of a future life does not count in favor of creating that life (McMahan Citation 2009 ).

We are among those who consider that the prognostic and moral uncertainty, the great impact on interests of others, and the parental right to make decisions about their pregnancy and children, point toward a wide gray zone at the margins of viability (Krick et al. Citation 2020 ; Wilkinson Citation 2011 ). To be ethically robust, however, the gray zone should not be determined by individual doctors or NICU staff. The definition and boundaries of the periviable gray zone within a society should be consistent and transparent, and should be determined by relevant stakeholders through an open process, preferably on a national level.

For the purposes of this paper, we do not need an exact definition of the gray zone. In the following, we will discuss decision-making within any established gray zone. We will focus on the parents’ role as decision-makers, and on how both parents and health care personnel (HCP) can be supported in these difficult life-and-death decisions.

Mina appeared vital at birth and was stabilized on noninvasive ventilation and surfactant administration through a tracheal catheter. Her skin appeared immature, and she had transitory electrolyte disturbances during the first days of life. After 2 days, she was intubated due to apneas, and bilateral grade II intraventricular hemorrhage (IVH) was found, which progressed to grade III on one side. The parents stayed in the NICU around the clock and participated in the care.

When treatment is clearly beneficial, the baby’s right to treatment outweighs the parents’ rights to make medical decisions for their baby. But how, and by whom, should decisions be made when the best interests of the baby are not clear? Ethicists in the US have been deferring to parental choices for decades. John Lantos summed up the ethical boundaries neatly (Lantos Citation 2018 ): “We try to do what is best for children (Kopelman Citation 1997 ). If we are not certain what is best, we try to do what causes the least harm (Diekema Citation 2004 ). These principles lead to clear conclusions in most cases. When they do not, parents are empowered to make decisions (Gillam et al. Citation 2017 ).”

But is it right, advisable, desirable—or even defendable—to ask parents like Mina’s to be responsible for life-and-death decisions for their child? What does it mean for parents to feel responsible for the suffering of their child or to know that they have denied their child a chance to survive?

Views are conflicting in the empirical literature on the question of parents as the ultimate decision-makers in the NICU. Several authors have found that most parents see such decision-making as a part of their parental responsibility (Mchaffie et al. Citation 2001 ; Moro et al. Citation 2011 ; Sullivan, Monagle, and Gillam Citation 2014 ). By contrast, a 20-year old Norwegian study found that many parents of preterm infants expressed an unwillingness to make life-and death decisions (Brinchmann, Forde, and Nortvedt Citation 2002 ). Icelandic parents of extremely preterm infants claimed their right to participate in treatment decisions as “emotional experts,” but there was disagreement about parents’ right to demand withdrawal of life support (Einarsdottir Citation 2009 ). In a recent study, we found persistent skepticism among both parents and HCP toward the idea of parents being the ultimate decision-makers. The general attitude of both groups was that parents should have a say and be included, but that the lack of necessary knowledge, experience, time, emotional stability and possible disagreement within the couple all point against placing the decision with the parents (Ursin and Syltern Citation 2018 , Citation 2020 ).

Mirroring this, studies show considerable cultural differences in how actively doctors are expected to involve parents in decision-making in the gray zone. A European study from 1999 found that European neonatologists did not leave the decision to parents (Cuttini et al. Citation 1999 ), and this finding was confirmed in a systematic review published in 2014 (Gallagher et al. Citation 2014 ). In line with increased focus on patient-centered decisions in general, a survey conducted in Germany, Austria and Switzerland showed an increase in the involvement of parents in such decision-making from 18% in 1996–1997 to 49% in 2016 (Schneider et al. Citation 2019 ).

There are several reasons for deferring the decision to parents within a defined gray zone. Having a child is the decision of the parents, and it seems fair that their interests should prevail over the preferences and potential interests of HCP. The parents are the authority in promoting the interests of the child and in protecting the child from conflicting interests. The parents will live with the long-term consequences of the decision, and they can best consider the effects on the life of siblings and their own willingness to commit to the burden of care. These concerns all point to the parents as the legitimate owners of decisions in the established gray zone.

For parents to become competent decision-makers, they must process the medical facts, acknowledge the ethical complexity, understand the implications for the infant and the family, and be able to comprehend the consequences of different options. They need to clarify their goals, values and priorities within their own context and circumstances. The two parents can have different views and values and might process information at a different pace. Both will face emotional and psychological hardship, and the mother can be physically affected by pregnancy-related illness.

To facilitate a fair decision-making process, time is essential to enable unprepared parents to take part. In Mina’s case, the mother was in active labor at arrival, and there was no possibility for a proper shared decision-making process. Without life support, Mina would have died, precluding parental participation. Hence, initiation of life support was the only reversible action.

Most couples just want to be good parents, and suddenly they are placed between a rock and a hard place: while mourning the loss of their healthy pregnancy, they must choose between letting their baby die or opt for life support, with all the risks it entails. They need to unite the logic of unconditional parental love with the logic of responsible parenting (Ursin and Syltern Citation 2020 ). Should “unconditional love” lead to choose life support, accepting a possible future burden of care for oneself, or does it point toward sparing their baby from suffering, and willingly face deep grief due to the loss of a child?

Parental push for initial life support might represent an autonomous, well-reflected decision based on a deep parental understanding of the situation. Their push can also come as an instinctive reaction: the instinct of saving . In interviews with parents, we found that parents emphasize the need to be “protected from themselves,” in order to attenuate the immediate and problematic impact of the parental instinct of saving when their child is born at the border of viability (Ursin and Syltern Citation 2020 ). Some parents claimed that HCP ought to protect parents against this immediate instinct, based on HCP’s knowledge about the hardship for both the child and the family. The influence of social media can also fortify the primary instinct of saving, offering easy access to “miracle” stories, and the many narratives of heroic parents fighting for their baby might further reinforce the primary instinct of saving (Rozier et al. Citation 2020 ).

Through several conversations during the first week, within a shared decision-making approach, Helen and Peter were given support and information about the moral dilemmas and Mina’s uncertain prognosis. They expressed ambiguity: they hoped for survival and a good life for her but were concerned about future disability. The doctors and nurses caring for her felt that further life support was dependent on parental wishes; all agreed that both continuing and withdrawing life support were justifiable decisions, and strived to communicate that to the parents.

Inexperienced NICU-parents are completely dependent on the support and influence of HCP. The goal should not just be to help parents understand their child’s situation and prognosis, but also the meaning of the choices they face. This represents a move from a more individualistic understanding of autonomy, defined as the ability to make individual, fully informed and independent decisions, toward a model of relational autonomy, where decision-making is made in consultation with and in consideration of others (Walter and Ross Citation 2014 ).

In shared decision-making , autonomy should not only be protected from unsolicited pressure but should also be actively promoted; family members and HCP can contribute to the development of the decision-making capacity of parents by presenting new possibilities, giving emotional support and removing social barriers (Gomez-Virseda, De Maeseneer, and Gastmans Citation 2019 ). Values, perceptions and aims can be shared and still be considered as the agent’s own, and parents can rely on trusted intimates and health care personnel, both for guidance and even to defer decision-making to them (Lantos Citation 2018 ). For shared decision-making to succeed, parents are completely dependent on the doctor’s willingness and capability to let them come into a position where they can participate decisively. Empowerment is indispensable for true parental autonomy in this setting. A goal of empowering parents will direct health personnel to their ethical task of creating autonomous parents: parents who are able to cope, control, find meaning, make decisions and achieve family well-being.

Poor communication skills are a challenge for proper parental involvement. A recent US study showed that when physicians were uncertain about outcomes, they presumed that families shared their goals for the child and initiated life-sustaining treatments, without discussing alternative treatment goals (Richards et al. Citation 2018 ). Studies looking at specific decision-making situations found that many parents felt decisions were made by doctors, whereas doctors in the same situations felt they were made by parents (Cavolo et al. Citation 2020 ). For instance, parents who state that they want their child “to be given a chance,” may feel that they have left the decision with the doctor, whereas doctors may misinterpret this statement as “the parents want everything done.”

Making recommendations based on the perceived best interest of the infant may at best lead to passive parental acceptance, and at its worst to misalignment between doctors and parents (e.g., “so you’re telling me to kill my baby”) (Marlow et al. Citation 2021 ). Strategies that encourage joint decision-making, such as looking together at different options, may lead to better parent engagement and less misalignment between the conversational partners.

There is increasing focus on how doctors can fulfill their ethical responsibilities toward parents faced with “impossible” choices. In order to enable parents to make decisions in line with their values, their circumstances, their needs, the desires of others they love, and their hopes for the future, the focus has shifted from the result of the decision-making process to the decision-making process itself. This has led to a paradigm shift in the understanding of what shared decision-making is and should be, urging physicians to become ethically conscious of their role as “choice architects” (Lantos Citation 2018 ).

Interestingly, questionnaire studies have shown that HCP are more reluctant to treat their own hypothetical periviable infant than the infant of others (Hagen et al. Citation 2012 ). One explanation could be that doctors are biased, and that they judge the quality of life of disabled children as being worse than parents do (Lam et al. Citation 2009 ). Another explanation might be that HCP stand in a more privileged position, with a deeper understanding of the moral dilemmas and better knowledge about the options and consequences of the decisions made. This raises a central question: How can doctors enable parents to step closer to such a privileged position?

In their effort to include parents in decision-making, HCP must be aware that parental wishes expressed in the delivery room or shortly after the delivery of their extremely premature infant may represent instinctive reactions. Without life support, the infant will die. A trial of therapy gives a chance of survival and the opportunity to tailor the decision-making process to the family’s need. Unfortunately, prognostication remains highly uncertain despite clinical and ultrasound assessments during the first weeks and months, and for parents it may be extremely difficult to ask for, or even consent to, withdrawal of life support (Leuthner Citation 2014 ).

In other words, we arrive at the dilemma of needing to start life support in order to permit a proper decision-making process on the one hand, at the same time as this by default leads to continuation of intensive care unless serious complications occur, thus effectively removing the intended possibility of decision-making.

Is it possible to escape from this dilemma? Is there a way to reach an Aristotelian golden mean, where parental decision-making is acknowledged and facilitated, and the psychological treatment imperative is avoided? Our proposal is that in the absence of enough time prenatally to elaborate a well-reflected prenatal advance directive, Footnote 2 life support at birth should be started in order to allow parents to participate in the decision-making. However, we need to make an effort to see this action as a “non-decision,” and as the only option to maintain the gray zone’s inherent window of opportunity for one week.

At the end of the week, one possible default option would be to continue life support unless serious complications occur. Another option is a formal meeting for planned shared decision-making, without any default. However, to compensate for the forces that arise from the instinct of saving and the withdrawal resistance ( see next section), we propose that the default action for infants, who still fall within the limits of the gray zone, should be to redirect to compassionate care after one week, unless the parents explicitly request to continue intensive care. This would be the best out of three imperfect options, and we label this approach postponed withholding .

The practice of postponed withholding— the PPWH-approach —aims to balance the external forces interfering with parental autonomy and empower parents in the shared decision-making process. Parents should not be placed in a situation where the set-up of the NICU and expectations of their parental role precludes their opportunity to act in line with their own life project. The clearly communicated default of intensive care withdrawal after one week should make the initial life support non-decisive: the decision of whether to opt for intensive care or not is still to be made, it has not already been made. Withholding is still an option, not just withdrawal. The withholding of life support is not decided against, but postponed.

The Ethics of Withholding Versus Withdrawing Practices

Even though withdrawal and withholding have been regarded as ethically equivalent in ethical literature and guidelines, studies show that HCP find it more difficult to withdraw than to withhold treatment (Ursin Citation 2019a ). This difference between withholding and withdrawing treatment is often explained as a psychological effect and referred to in terms such as “withdrawal aversion”: a non-rational preference for withholding treatment over withdrawing treatment (Wilkinson, Butcherine, and Savulescu Citation 2019 ).

However, this psychological explanation has been criticized by both physicians and ethicists, arguing that there are ethically relevant differences between withholding and withdrawing treatment (Chung et al. Citation 2016 ; Ursin Citation 2019a ). In the NICU, the ethics of saving versus creating points toward such a difference. The option to withhold life-saving treatment at birth can be regarded as belonging to a “window of opportunity,” where the decision not to initiate life support is justifiable. By contrast, the option to withdraw life support some days later, even within a gray zone and even if the medical situation is more or less the same, can be regarded as unjustifiable.

Why? Because a treatment and care relationship has been initiated, parents might hold that the ethics of creating a life (not to opt for life support at birth can be justifiable) has changed to the obligations of saving a life (not to uphold life support for the born child is unjustifiable) (Rieder Citation 2017 ). Thus, to make withdrawal—and consequently parental decision-making—ethically possible in the special situation of periviable birth, it must be clearly communicated to parents from the start that by not opposing the initiation of life support at birth they do not thereby close the window of opportunity: they still have the option of postponed withholding.

Talking of “postponed withholding” may appear to be mere moral newspeak, having no impact on the moral realities. This is not so. Postponed withholding implies an ethically significant change in NICU practice (Emmerich and Gordijn Citation 2019 ; Ursin Citation 2019b ) [ Table 1 ]. This change of practice is a way to clarify the ethical situation in the gray zone, where different courses of action are equally justifiable. This change is not just a matter of moral psychology, for instance “making it easier to withdraw,” since the aim of PPWH is not to make it psychologically easier to withdraw treatment. The change is a matter of ethics, making it clear that starting life support at birth is not to make an ethically irreversible decision, but to enable well-reflected ethical decision-making.

critical care decisions in fetal and neonatal medicine

Published online:

Table 1. core elements of ppwh compared to the traditional approach..

Acknowledging that the difference between withholding and withdrawing can be of ethical importance, we name the ethical difficulty of withdrawing treatment once started withdrawal resistance . At the border of viability, withdrawal resistance can potentially lead to both under- and overtreatment. Undertreatment may result from fear of having to bear the responsibility for the future life of the infant and family, leading to a decision of not initiating life-support at birth. Overtreatment can arise due to the hardship of withdrawing treatment; continuing treatment can easily become the default and the consequence of a “non-decision.”

Some parents feel that explicitly consenting to withdrawal of care is giving up on, or even killing, their child (Humikowski Citation 2012 ). If the default action is to stop life support, there will be no need to force parents to consent. Postponed withholding gives parents the time to receive guidance from different perspectives and the opportunity to reflect and deliberate. Thus, withholding life support after some time rather than withholding treatment at birth will provide the parents an opportunity to cope with the situation in a meaningful way for them.

Default options are sometimes used as “nudges”; an approach to steer people in a particular direction for their own good (Schmidt and Engelen Citation 2020 ). The intention of PPWH is not to nudge, but to strengthen volitional autonomy. The aim is to counteract the forces that immediately come into play when faced with the possible loss of a desired baby, and to give parents time to reflect on their goals and values. At the same time, we secure equity by starting life support for infants in the gray zone, making shared decision-making possible.

Postponed Withholding in Practice

In the setting, the treatment team felt that continuing life support was easier than withdrawing, as there was still a possibility for survival with minor disability, which was clearly communicated to the parents. In order to make it possible for parents to opt out of life support, they were asked if they would protest if the treatment team made a proposal (not a recommendation) to stop life support. They stated that they would be comfortable with such a decision. After baptism with grandparents and siblings present, treatment goal was redirected to palliative care. Mina was extubated on her mother’s chest at 10 days of life, and died peacefully within 2 hours.

At birth, the immaturity of Mina’s vital organs will lead to death within minutes or hours. If palliative care is chosen, her fetal aspect can promote emotional acceptance of a natural, even inevitable, death. However, thanks to technology and improvements in neonatal intensive care, we know that a chance for survival may exist. The NICU team can start respiratory support, intravenous nutrition and keep her warm in the incubator, treating her as gently as possible to try to minimize the risk of complications. This is the only potentially reversible action for Mina at birth.

After one week, Mina’s prognosis is still highly uncertain; she may die from complications due to extreme immaturity, survive with severe impairment or survive with only mild impairment. Signs of brain damage or bleeds on cerebral ultrasound during the first days often serve as a trigger to start conversations with parents about treatment limitations (Brecht and Wilkinson Citation 2015 ; Sheehan et al. Citation 2017 ). However, even in the absence of such findings, it is ethically problematic to exclude parents from the continuous process of decision-making, which is inherent in the continued provision of intensive care in the gray zone.

Inevitably, both the emotional and psychological situation changes as time passes, and so do the actions required to reverse the initial life support. To allow a “natural death” in the NICU for Mina, the endotracheal tube needed to be actively pulled out, and parents and HCP could observe how Mina would gradually shift from a warm and active preterm baby, to become a cold and eventually dead baby on her mother’s chest. Psychologically, it might have been easier for the parents if life support had never been initiated. For HCP, it might have felt easier to continue life support as long as there was hope for an acceptable outcome. The parents felt the risks for their family were too high, and their decision of not asking for further life support prevailed.

In order to enable parental decision-making, life support and optimum care should be provided in the NICU during the first week, and the counseling process with parents can either start, as in Mina’s case, or continue if started prenatally. The parents will get to know their premature infant, see how treatment is carried out and how the infant responds. In addition to being counseled in a relational way by the infant’s treatment team, the parents would benefit from psychological and spiritual support, allowing them to explore as a couple how to cope with the situation. This could help them to focus on the possible long-term consequences for both the child and the family, and to understand the moral meaning of the choices they face.

During this week, no decision is forced upon them. During and after initial resuscitation, the treatment team must continuously assess whether life support continues to be within the limits of the gray zone, or if it has fallen below a harm level due to serious complications and thus ought to be discontinued. If the infant dies, there will be no decisional burden for the parents to bear. While in the NICU, memory-making will take place (pictures, visits from extended family, rituals at parental discretion), acknowledging the infant’s place in the family narrative, all of which may lessen the burden of bereavement if the baby dies (Kochen et al. Citation 2020 ).

A planned redirection of care will encourage HCP even more to involve parents and help them clarify the ethical dilemmas and shared responsibility created by technological opportunities at the beginning of life. By the end of the first week, the parents should be better prepared to participate in the shared decision-making process for their child. If they decide to leave the decision with the treatment team, we propose that the default for an infant in the gray zone should be to redirect to palliative care. If the infant presents a better prognosis than predicted and no longer is considered to be within the established gray zone, redirection of care would no longer be an option.

Critical Discussion of the PPWH-Approach

There are several challenges to the proposed PPWH approach and its implementation. In this section, we will discuss some of these challenges.

First , is the PPWH-approach just old wine in a new bottle? How does this approach differ from already proposed or established practices? In many aspects, the proposed PPWH-approach resembles time-limited trials (TLT) in adult intensive care units. TLT is an agreement to initiate all necessary treatments or treatments with clearly delineated limitations for a certain period, in order to gain a more realistic understanding of the patient’s chances for a meaningful recovery or to ascertain the patient’s wishes and values (Vink et al. Citation 2018 ). TLT typically applies for patients with limited reserves and quality of life, where the benefits of intensive care treatment are uncertain. The aim is to promote effective dialogue, develop consensus in decision-making and set rational boundaries to treatments based on patients’ goals of care (Chang et al. Citation 2019 ).

An important difference between TLT and PPWH is the special situation of the infant at the margins of viability, where the infant’s interests are so profoundly dependent on and intertwined with those of the parents. In addition, when there is no time for prenatal counseling, life support at birth is the only way to ensure parental involvement in the decision.

PPWH shares similarities with other NICU approaches. Conditional offer of treatment is the basis for a “trial of therapy”: the opportunity to withhold or withdraw life support tailored to the needs of the family and child (Myers, Andrews, and Meadow Citation 2018 ). PPWH in a way resembles “life on approval” as described in Dutch national guidelines, which requires withdrawal of life support when facing a grim prognosis (Willems, Verhagen, and Van Wijlick Citation 2014 ). PPWH is also a kind of “defined treatment period” in prescribing an active decision to reinstitute life support after a set period (Wilkinson, Butcherine, and Savulescu Citation 2019 ).

To qualify as PPWH, however, it is essential that doctors and parents see the initial life support as a non-decision, followed by a period of time in the NICU where HCP engage with parents in an active process to pursue parental empowerment before a decision is made. Several forces need to be counterbalanced to accomplish this, not just the instinct of saving on behalf of parents. Another force is the continuous comparison of survival statistics between NICUs that may lead to a “benchmarking effect,” making doctors favor continuation of life support in the gray zone. The technology itself can also become a self-perpetuating force, referred to as the “technological imperative” (Hofmann Citation 2002 ).

The PPWH approach thus entails that, in the absence of an explicit parental request to continue life support, the default should be redirection to palliative care. In this way, both parents and the treatment team have to acknowledge that there is a choice to be made and the parental right to actively take part in that decision. If parents and the treatment team together agree that further life support should continue, they can decide whether it should be as a period of time-limited treatment or as maximum beneficial treatment.

Second , if NICUs introduce postponed withholding at the margins of viability in the sense described here, are they then expressing that the lives of these preterm babies are not worth living? In our view, they are not. What they are expressing is that no medical doctor has the expertise to say whether the benefits outweigh the harms. Postponed withholding, as the default position, is then backed up by two ethical concerns: first, that postponed withholding is ethically acceptable due to the harm-benefit-balance and second, that it empowers those who actually own the decision to make better decisions.

Third, the huge emotional burden on parents and the possible perceived inability to reach a sound decision may be one of the most obvious challenges. The decisions to be made are extremely high-stakes and life altering, so it is no surprise if many parents prefer not to bear the burden. However, as parents are ethically entitled to take part in these decisions, we should strive to position them to participate, despite the inherent difficulties.

We are not implying that this approach will ease the decision. Our goal is not to aim for the easiest way out, but to strive for an ethical and fair decision-making process, where parents are empowered to act in line with their life project.

Moreover, in many countries, parents are presented with similar “impossible decisions” in other contexts. When a fetal anomaly is detected halfway through a desired pregnancy, and terminating the pregnancy is an option, HCP’s role switches to that of counselor. Society has placed the decisional power with the mother. Medical authority retreats; no doctor is entitled to take on the decisional burden.

A second trimester abortion places the responsibility of ending the life of the fetus on the woman. For some, it is not even an option, while for others it can be seen as a self-sacrifice on behalf of the mother, to protect both the unborn child and the family from suffering (Risoy and Sirnes Citation 2015 ). Some parents choose to terminate the pregnancy, and others opt for palliative care after birth, even if the prognosis is better than for preterm infants born at 23 weeks of gestation (Mercurio, Peterec, and Weeks Citation 2008 ). Others opt for maximum beneficial treatment. Although there are fundamental differences between the abortion situation and the extremely premature birth situation (that we cannot elaborate on here), the take-home message is that when reasonable people disagree about the right action and doctors are not in a privileged position to make the decision, parental values should be given a possibility to prevail. Value pluralism should be actively promoted and accepted within the established limits (Kaempf, Kockler, and Tomlinson Citation 2018 ).

Fourth , introducing the postponed-withholding concept may lead to more infants receiving initial life support, and potentially more needless suffering. However, this is justified by both the medical and moral uncertainty: our objective is to permit parents to grasp the situation before any irreversible action is taken. The burden of intensive care will be of limited duration, and many parents who suffer a loss in the NICU, express their gratitude for the days they got to spend with their baby. The initial treatment is complex and requires great skill, and by facilitating practice of technical procedures and teamwork in the NICU-team, this approach might contribute to optimize care and improve outcomes for those who continue on life support. This may potentially reduce the total amount of suffering for the group of periviable infants as a whole.

Fifth , the PPWH-approach may induce emotional distress in clinicians, both for placing the burden on parents and for acting against what they may see as the child’s best interests. Moral distress, the anguish experienced when clinicians are prevented from acting in accordance with their own moral judgment, is most commonly described in situations where HCP, typically nurses, feel that a patient is receiving disproportionate care (“doing too much”) (Prentice et al. Citation 2020 ). On the other hand, a default leading to withdrawal of respiratory support from an otherwise stable one-week old extremely immature baby might be difficult to unite with the strong imperative to save lives experienced by many neonatologists.

Moral distress may arise from tensions between personal values and the professional obligation to respect parents as decision-makers for their child. When a decision legitimately remains within the gray zone, parental values should prevail over a doctor’s possible “instinct of saving.” HCP who believe that the child is being harmed must be supported in their ongoing provision of care of both the infant and the family, and the potential costs and burdens to the clinician must be acknowledged. A stronger focus on the high degree of prognostic uncertainty may help doctors to feel more comfortable accepting parental decisions that differ from what they would professionally recommend (Krick et al. Citation 2020 ). Attention to factors that can build moral resilience and an ethical climate characterized by self-reflection and constructive dialogue should be promoted (Prentice et al. Citation 2018 ).

Postponed withholding does not solve the need for prenatal counseling and support in the decision-making process. Decisions concerning mode of delivery (vaginal or C-section), when to start antenatal steroids and whether to transfer to a hospital with a tertiary NICU must be addressed as soon as threatened birth is recognized. Comfort care at birth will still be an option for well-informed parents.

Lastly , does postponed withholding place parents in an inhumane situation? With their vulnerable and beloved infant in the incubator, will they have any other option but to choose continuation of life support and thus feel responsible if the outcome, as they see it, turns out to be bad? Laura Navne, a Danish anthropologist, may give us a hint of an answer. Doing fieldwork in a Danish NICU, she observed that even the shortest and smallest life was articulated and enacted by HCP as a morally valuable person that parents are encouraged to relate and attach to. At the same time, however, not all lives were considered by the HCP as worth saving or worth living. Periviable birth created a “maybe-life,” but there was no such thing as a “maybe-parent” (Navne, Svendsen, and Gammeltoft Citation 2018 ).

Attachment is imperative in the NICU, but Navne asks if we perhaps should be more coherent and balanced in our approach and make more room for detachment and hopelessness when receiving children who arrive much earlier than expected. To offer optimal initial life support, giving parents time for responsible and balanced decision-making, and presenting withholding as the default option can be a step in that direction. Moreover, if parents have been given room for detachment, doubt and the default policy of PPWH, and they still want to go all in, the decision-making process itself may promote resilience and acceptance of the outcome for the child and the family.

In neonatal care, we need transparent, consistent, documented, published and clearly communicated gray zones and decision-making processes that can accurately meet the dilemmas that modern technology entails. Within the gray zone, the acceptance of value pluralism points toward a responsible shared decision-making approach. We should empower parents and enable them to address both the short and long-term interests of the child and family and to act according to their own values and circumstances. Given a caring relationship with the treatment team and access to accurate written information, physiological and spiritual support and time for parents to reflect, we believe the postponed-withholding approach can help HCP and parents to reach robust and balanced decisions for infants born at the margins of viability.

ACKNOWLEDGMENTS

Thanks to the editor and four anonymous reviewers of AJOB for very valuable comments and suggestions that significantly improved this article. Thanks also to Håkon Bergseng, consultant neonatologist at St. Olavs Hospital, for valuable contributions.

DISCLOSURE STATEMENT

Dr. Syltern, Associate Professor Ursin, Prof. Solberg and Prof. Støen have significantly participated in the development, preparation, and revision of this manuscript. None of the authors has personal or scientific conflicts of interest. They all agreed to the final version of this paper.

1 Recent studies have shown that not just risk of death, but also risk of impairment is strongly associated with decreasing GA, challenging the view that GA is not a good predictor of long-term outcome (Myrhaug Citation 2019 ). In a recent systematic review presented by professor Kaempf at Hot Topics in Neonatology (Washington, December 2020), improved survival seemed to be accompanied by improved long-term outcome for extremely premature babies born at GA 25 and 26 weeks, but sadly not for the most immature babies born at GA 22 to 24 weeks. The total burden of intensive care treatment also relates strongly to immaturity. As an example, the median duration of mechanical ventilation in Sweden for a baby born at GA 22 weeks was 47 days, whereas one out of three babies born at GA 26 weeks were never intubated, with a 2-day median duration of mechanical ventilation for those who were. (Norman, oral presentation at Hot Topics in Neonatology, Washington, December 2020).

2 The time frame for elaborating a prenatal advance directive needs to be individualized. Some well-prepared parents will know what is right for them upon arrival at the hospital while others may need several days.

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Aims: To evaluate the need for Do Not Resuscitate (DNR) orders in a tertiary referral centre for neonatal intensive care, the criteria used in making these decisions, and the applicability of the Muslim ethical stance among parents in an Islamic community.

Methods: A prospective evaluation of all DNR decisions in the neonatal intensive care unit at the Royal Hospital in Oman, over a one year period between November 1999 and October 2000. This included decision criteria, and parental responses and expectations.

Results: Of 659 admissions to the neonatal intensive care unit during this period, DNR orders were written in 39 (6%) instances. Most related to congenital malformations (24/39, 62%). In those in whom ventilation was commenced (19/39, 49%) withdrawal was not culturally acceptable and expressly permitted in only 11%. For those in whom ventilation was not commenced (20/39, 51%), 70% agreed not to put their child on the ventilator if they did require it. Presence of extended family support (grandparents) and clergy was extremely useful.

Conclusions: Asking parents alone to be explicitly involved or take full responsibility for decisions involving life and death is not culturally or socially acceptable in this community. Presence of extended family, and indirectly sounding out and taking into account their wishes, is more appropriate after assessing the resources and support services available.

http://dx.doi.org/10.1136/fn.86.2.F115

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A lthough technology exists to sustain vital functions of almost any neonate, albeit for a short time, not every patient is a candidate for initiating and maintaining life support. All neonatal intensive care unit (NICU) physicians are called on to make “Do Not Resuscitate” (DNR) orders on a regular basis. Problems specific to the NICU relate to malformations of the fetus including lesions incompatible with life, and with problems relating to the limits of viability. Immense advances in neonatal intensive care over the past 25 years, especially in the developed nations, mean that more and more of these infants are surviving, with or without severe handicap. 1, 2 Community expectations have risen, sometimes inappropriately, and pressure may be put on health care providers to attempt salvage of nearly every live born baby. This raises many ethical and practical questions. Standards from the developed nations are often transposed onto other communities, where salvaging these infants may be unwarranted and community support services limited.

Religious and cultural issues often play a more vital role in decision making by parents and physicians than economic considerations, especially in Arab nations. Physicians are often reluctant to even broach the subject of DNR with parents, believing it will not be accepted, may cause a loss of trust in the physician, or “it is unfair to ask parents to be involved in the decision making process involving life and death”. This has led to a significant increase in the number of handicapped survivors, and to a shortage of intensive care beds, as a result of inappropriate intensive care being given for an inordinately long time.

We assessed the frequency of the need for DNR orders in an NICU setting, the criteria used in vital support limitation decisions, parental expectations and response, and the outcome of these infants, in a Muslim Arab community. While there are numerous guidelines and personal viewpoints published from Britain and North America, 3, 4 no data have been published, to the best of our knowledge, from this population group, and very few data from neonatal units anywhere else on parental responses to end of life decisions.

We prospectively assessed all patients who had the need for a DNR order considered in an Omani NICU between November 1999 and October 2000. The Royal Hospital is a 30 bedded level 3 NICU, catering for a high risk obstetric service of about 5000 deliveries annually; it serves as a referral unit for an additional 30 000 deliveries from the country. Referrals of neonates from other units are mainly for complex cardiac and neonatal surgical problems, but occasionally for prematurity and its complications. More than 95% of patients, 70% of physicians, and 50% of nursing staff are Muslim.

Data were gathered primarily to answer the following questions:

The frequency of DNR orders in a tertiary care NICU.

The circumstances and criteria used to initially consider writing a DNR order.

Parental expectations and response to limiting or withdrawing life support in the context of Islamic ethics.

The eventual short term outcome of these patients (death or discharge home).

When a member of the care giving team felt a DNR order should be considered, a conference was held to determine the reason and obtain nursing, medical, and social workers' opinion and concurrence. Once this was obtained, counselling sessions with both parents or the father alone were done by at least two care givers, of whom one was the primary staff physician and the other the bedside nurse taking care of the infant. A native Arabic speaking physician was always present during counselling. Parental expectations were recorded, as was the type of care before and after writing a DNR order. Guidelines for managing the patient after a DNR order was written in accordance with the hospital and Ministry of Health policies, which state that the fact of DNR should be clearly recorded in the case notes, and humane care only should be given so long as the DNR order is in force. The DNR order could be revoked at any time by either the care giving team or by parents.

Once a DNR order was considered we classified patients into three groups:

Group A: lesions incompatible with life

Group B: lesions which will not allow meaningful survival

Group C: end of treatment line; death inevitable.

In Groups A and B, either no life support measures were initiated, or if initiated, could be withdrawn. Withdrawal of life support measures meant the discontinuation of ventilatory support, inotropes, and antibiotics. Anticonvulsants, sedation, fluids, feeds, and oxygen were not withdrawn.

In Group C, withdrawal of intensive care was the only possible option when counselling parents.

Data were gathered as to whether an antenatal diagnosis had been made and possible options discussed with one or both parents. The type of lesion was grouped according to system—cardiovascular disorders, renal anomalies, gastrointestinal, chromosomal, etc.

There were 659 admissions to the neonatal intensive care unit during this period, and 77 deaths (12%). A DNR order was considered and written in 39 (6%) infants. All were Muslim. In two of these the DNR order was subsequently revoked. Table 1 lists the major systems involved in these patients, with their diagnosis. Based on the diagnosis and perceived outcome, we classified the babies into three categories (see table 2).

View inline

Major diagnosis in DNR patients (n=39)

Of these 39 patients, 28 died in our hospital, seven were sent back to the referring hospitals, and four were discharged home for terminal care. When patients were discharged home for terminal care, the fact was recorded on the discharge summary and child health card. All re-presented to the paediatric emergency department within one month of discharge in a terminal state, and died in hospital. Palliative care only was given. Of the seven sent back to referring hospitals, six died within one month and one is still alive at 6 months of age. In the two patients in whom the DNR order was initially written (polycystic kidney disease; severe chronic lung disease) but subsequently revoked, one died and one survived to discharge. He was lost to follow up.

The average time between birth and DNR was 10.6 (SD 14.8) days; DNR and death or discharge was 7.6 (SD 10.4) days. Based on the type of DNR, table 3 shows the time intervals. An average of 2.5 counselling sessions (range 1–5) was given to the parents before a consensus decision could be made regarding their infants.

Table 4 shows parental responses to withdrawal of support. In those in whom ventilation was initiated, only 11% of parents (2/19) allowed discontinuation of ventilatory support whereas 89% (17/19) refused or did not offer a definite opinion. In those in whom ventilation was not initiated, 70% (14/20) agreed not to put their child on the ventilator and to discontinuation of inotropes and/or antibiotics if the child was receiving them at the time. In six of these 20 patients (30%) the question of withdrawal did not arise (lethal trisomies, anencephaly, holoprosencephaly). Therefore none of these parents insisted on ventilation if deterioration occurred.

Parental responses

In Arab Muslim countries, the relationship between patient and physician is one of traditional paternalism, based on the principles of goodness and kindness. This is no different from Christianity, whose adherents are directed to do good to others in a spirit of love and kindness ( Holy Bible , Matthew xxv, 35–45).

The Shariah law, which governs the citizens of Arab Muslim countries, is based on:

The Quran—the Holy Text believed by Muslims to be the direct word of God.

The Sunnah—the examples in word or deed of the Prophet Mohammed and incorporated into Islamic scriptures.

The Ijtihad—the law of deductive logic. 5 In this, learned scholars or Ulema are charged with interpreting and disseminating religious teachings. This may, of course, lead to differences in opinion between different scholars and therefore different interpretations of the law. To overcome this, many Ulema have concluded that in situations requiring specialist knowledge, for example, in medical practice, a new concept of “consensus edict” is preferable. In these rulings, the consensus groups have representations of Ulema and specialist clinicians, the latter providing the necessary background information. It is Ijtihad that provides the Muslim Sacred Law with its dynamism, allowing it to remain relevant while responding to new challenges and concerns that inevitably arise as a result of scientific advances. The issues at stake with regard to DNR are not clearly spelt out in the Quran and Sunnah, and have therefore to be interpreted from the Ijitihad (views and thinking of Muslim scholars and clergy).

One issue which we face in our patients is summarised as: “Whosoever takes a human life, for other than murder or corruption in the earth, it is as if he has taken the life of all mankind”. 6 No one is therefore authorised to deliberately end life, either one's own or that of another human being. However, reducing suffering by analgesia, even if death is thereby hastened, is permitted, based on the central teaching that “actions are to be judged by their intentions”. Withholding nutrition and fluid therapy is not allowed. We therefore continued fluids and feeds in all our patients.

In 1987 a US based Muslim thinker expressed the view that unnecessary artificial prolongation of life is not in keeping with the spirit of Islam, unless there is evidence that a reasonable quality of life will result. 7 This led us to the question of whether euthanasia would be permissible or acceptable. Active euthanasia is always illegal, and passive euthanasia also is not generally accepted despite certain religious writers' views on the issue and a professional code of practice recommending that physicians should not impose futile care in an attitude of unreasonable persistence. However, others are of the view that no situation is considered hopeless for Muslim believers who believe in the omnipotence of an Almighty God. Withholding or withdrawing treatment from any patient is therefore never easy and cannot be generalised. Cultural, social, and religious issues have to be taken into account when making decisions. We remind patients of God's omnipotence, and the transient nature of our time on earth and the abiding reality of spending eternity with God. Whatever we may do, the ultimate fact is that God determines the time of death, and we are only God's instruments for the good of the patient.

We very rarely portray a wholly negative attitude, but show guarded optimism tempered with scientific reality, where we discuss the real possibility of worse to come—either slowly or catastrophically. When DNR decisions are being discussed with the parents, we nearly always ask them if they would like other close family members to be present. The presence of an elderly male, who may be a close relative or a cleric, often brings relief to parents bearing the burden of having to cope with a dying child and make decisions at the same time. More often, through this dynamic dialogue, we have to gauge parents' and families' wishes, even though this is virtually never articulated. When the question of withdrawal of life support measures is raised (turning off the ventilator), we meet with near universal refusal (89%). Parents and extended family do not want to be seen as having acquiesced in their child's demise. In contrast, when the child is not ventilated but a decision of DNR or limiting vital support measures is made, none have objections to limiting therapy. We always say that “In our opinion, and if this was my child, I would not put the child on the ventilator”. Parents often acquiesce to this either silently, or by saying “You are the doctor and nurse. You do what is best for my child”. We interpret this as parents not wanting to make a life or death decision themselves, but are happy to accept transferring the responsibility onto a person in authority. This is where we have found extended family support and the presence of clergy extremely helpful. Asking parents alone to make this decision is not appropriate or acceptable. Even asking them to be part of the decision making process, when withdrawal of therapy is medically warranted, may be inappropriate in this culture.

This approach may not be very different from the practice in certain European countries. In a French study, in which a large number of intensive care units were polled, it was shown that withholding or withdrawing life support is widely practiced, despite prohibition by legislation. 8 In a study of various neonatal units in Europe about the policy of DNR and ethical decision making, it was found that in Great Britain, parents are explicitly involved in this process by open participation (78% units surveyed) or assume full responsibility for their choice (11%). In contrast, none of the French units reported open involvement of parents in decision making, although parental views are always “indirectly sounded out and taken into account”. In Sweden, 68% of units follow this policy of indirectly sounding out parents' wishes, and in 26% they are involved in the decision making process. 9

Contemporary practice and moral law in the western world is therefore not very different. Ethical decisions primarily reflect the interest of the infant. Interests of parents, other family members, or society at large are secondary. 10 This leads to differences in opinion as to what constitutes the best interest of the child and who is to administer this right. Parents are expected to act on behalf of their child and make decisions for them. In 1981 Dr Leonard Arthur was tried for attempted murder, for acting in the belief that non-treatment of an infant with trisomy 21 who had been abandoned by his parents was justified. 11 Shared responsibility between neonatologists, obstetricians, and parents is probably the best way forward in a society with a high level of education and concept of individual rights. This may not be so in other societies, and trust in and integrity of the care givers would therefore play a vital role in the decision making process. Attempts by lawmakers or administration to force treatment, which may be considered by parents and physicians to be futile or inhumane, may lead to an atmosphere of distrust and fear, as happened in the USA in the 1980s with the Baby Doe regulations. 12

The main findings in our study were that 36% (28/77) of the deaths in our NICU were preceded by a DNR order. This is lower than the 67.9% reported by Torres and Garcia, 13 the 50–55% in a population of surgical neonates from the Netherlands and the USA, 14 and the 46.2% in a Nigerian study of perinatal deaths. 15 This may be related to the fact that parents are reluctant to consider or acquiesce to a DNR order, as they feel that in matters of life and death only God decides and we are His chosen instruments. All should therefore be done to support the infant and the rest left to God.

Only two of 19 (11%) parents of patients in whom ventilation was ongoing permitted withdrawal. The rest silently acquiescenced in the fact that withdrawal was necessary, but it was never explicitly articulated. We consider this as “indirectly sounding out their views and taking them into account” as discussed earlier. They were aware that some form of intensive care was being withdrawn and we were keeping their child as comfortable and pain free as possible. Ventilation, of course, was not completely withdrawn, though in seven of the 17 patients, ventilation variables were turned down—that is, supplemental oxygen was gradually withdrawn and inflation pressure was reduced. Parents were aware of this by seeing the “numbers” on the display panels. Is this the right way of going about withdrawal of therapy in ventilated patients, especially considering that the local relationship between patient and physician is one of traditional paternalism? We do not know and this is a constantly evolving issue. However, we strongly feel that we are acting in the best interest of parents, considering all scientific knowledge and the resources available in the community.

Most of the DNR decisions in the unit involved malformations (24/39, 62%). Withholding therapy was accepted better in these patients, especially if an antenatal diagnosis had been made. The general feeling of the parents was one of relief once the decision was made not to resuscitate or their child died.

We do not resuscitate infants with gestational age 24 weeks or less, and we consider a limit of viability as 25 weeks and above. This is based on a realistic assessment of the resources available locally, and from both short term and long term data reported from western countries and our own follow up clinic. This differs from units in the USA where, in a survey of 3056 neonatologists (1131 complete responses), 62% would give full intensive care (ventilate and administer surfactant) to infants at 23 weeks and 78% to infants at 24 weeks. 16

From the viewpoint of the care giving staff, we noticed that neonatal experience accentuated the disinclination to resuscitate a “high risk baby”. Year 1 and 2 residents were more likely to offer no opinion or want to resuscitate these infants compared to year 3 residents or “fellows” on the NICU. Religious preferences were not an issue as all residents are Muslim. Factors in the junior residents' views on resuscitatation were the “role of physicians to save lives”, the “inability to prognosticate the outcome” which was not based on scientific literature but based on the omnipotence of God, and that we should not play at being God. We did not track their attitudes to DNR through their levels of training. “Senior nurses” (those who have worked for more than two years on the NICU) held strong views on the issue and nearly always agreed with the DNR decisions. In fact in more than 50% of group B and C patients, the DNR decision was first broached with the neonatologist by the bedside nurse.

We conclude that it is necessary to take decisions on vital support limitation or withdrawal of therapy in neonates, especially in malformed infants, or when they are critically ill. To accomplish this, we evaluated individual patients' prognoses, the acceptable “grassroot” standards of ethical care in the community, and the child's and family's best interest. It is not acceptable, in this community, to ask parents to make decisions regarding life support of their infants; it is preferable to make the decision for them, based on published scientific evidence in the context of resources and support services locally available and gauging their response in discussions with them.

Muslim parents in the United Kingdom are much more knowledgeable about their rights and want to get involved with decision making more and more. The support of the extended family, although still strong, is slowly breaking down, and many more can now communicate in English. Although neonatal mortality in the United Kingdom is different from that in Oman, difficulties can arise, particularly when carers of a different faith are perceived not to understand the Islamic viewpoint. There is in the Muslim “psyche” the notion that non-Muslim professionals do not value a Muslim's life as much as another. However, more and more Muslim mothers are agreeing to antenatal screening and terminations, particularly if they have already had a child with a congenital problem.

In my experience, parents are very much involved, with some support still being provided by the extended family. The difficult decision of DNR is less likely to be accepted by Muslim parents and relatives than the host population in the United Kingdom. In this decision making process, nursing staff play a vital role; in the United Kingdom nursing is still considered by Muslims to be a somewhat “liberal” profession not conforming to Islamic ways. We therefore do not have the same religious support as in Oman; 50% of the nursing staff in this study was Muslim. One of the ways around the difficult problem of communicating a decision not to resuscitate is to make it clear to parents that the professionals do not want them to make the final decision to end life. Rather that the parents allow the carers to make a judgment and, if necessary, decide to withdraw life support. This can be clearly inserted in the case notes of the neonate. For this strategy to work, the full trust of the family unit has to be gained before the subject can be approached.

The local population in developing countries hold doctors in high esteem, particularly if trained in the West. Unfortunately in the United Kingdom, generally, doctors are not respected to the same degree and so the question of trust becomes all the more important. Silent acquiescence by the parents in the withdrawal of treatment, as happens in Oman, would be fraught with medicolegal problems here if not explicitly articulated and agreed to by the parents.

From time to time it can be useful to have a second opinion from a practising Muslim paediatrician, as has happened in the West Midlands. The simple greeting of “Assalamualaikum” often breaks down the immediate barrier and facilitates further discussion. The literature on health and Islamic issues continues to proliferate slowly, as some professionals take an interest and begin to understand other religions and cultures.

This paper raises the important issue of training young doctors in ethical issues. This, I believe, should start in medical school, as has been suggested by the General Medical Council in its document “Tomorrow's doctors”. Such training should include ethical issues of other cultures.

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Critical care decisions in fetal and neonatal medicine: ethical issues
These self-same advances have, however, created the dilemmas in critical care decision making which are at the heart of this Report. Medicine offers choices.
Critical care decisions in fetal and neonatal medicine: ethical issues
intensive care or replace active treatment with palliative care. The Nuffield Council on Bioethics has published a Report, Critical care decisions in fetal and
Ethical decisions in fetal medicine and neonatal intensive care
The Nuffield Council on Bioethics (2006) report Critical Care Decisions in Fetal and Neonatal Medicine: Ethical issues addressed three areas of concern to
Ethical Problems in Decision Making in the Neonatal ICU
In the neonatal intensive care unit (NICU), disagreements about whether life-sustaining treatment can ethically be withheld or withdrawn are
critical care decisions in fetal and neonatal medicine: ethical issues
Advances in medicine mean that families and health professionals can be faced with very difficult decisions about the care of extremely
Ethical Issues in Neonatal Care
Pediatrics. Feb 2007;119(2):401-3. Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues.
Clinical decision support in the neonatal ICU
As a result, CDS has a direct impact on the delivery and healthcare outcomes. This review covers the fundamental concepts, as well as the infrastructure needed
Moral Distress in the Neonatal Intensive Care Unit
Shared decision-making and the zone of parental discretion can inform and challenge the medical team to balance the complexities of patient
Postponed Withholding: Balanced Decision-Making at the Margins
Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms
Ethics and palliative care in the perinatal world
in the neonatal intensive care unit (NICU) as nearly 70% of infant ... Seminars in Fetal & Neonatal Medicine 23 (2018) 35e38.
Do Not Resuscitate orders and ethical decisions in a neonatal
Results: Of 659 admissions to the neonatal intensive care unit during this period, DNR orders were written in 39 (6%) instances. Most related to congenital