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Ethical Issues in Neonatal Care

  • Author: Brian S Carter, MD, FAAP; Chief Editor: Ted Rosenkrantz, MD  more...
 
Updated: Jan 16, 2015
 

Overview

Background

As neonatal medicine has developed in the United States, clinical ethics (ie, bioethics, medical ethics, healthcare ethics) have also become increasingly present in the healthcare environment.[1] For more than 40 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.

Throughout this period, great strides have been 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 has increased dramatically, as has the number of professionals and specialists trained to care for this vulnerable population.

The results of these progresses are mixed. A substantial reduction in the mortality of premature infants has occurred. The rate of handicap or significant morbidity appears to have remained steady or declined in survivors of the neonatal intensive care unit (NICU) of nearly all gestational ages and weights. Despite these facts, the rate of prematurity has not declined in the United States; in fact, it has risen. Nor has the rate of low birth weight babies (those with birth weights < 2,500 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.

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Ethical Questions

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 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 still may 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.[38] 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 3 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.[2] 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.

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Goals of Neonatal Intensive Care

Overview

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 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 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.[3]

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 period of time. 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-term 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.

Parents

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.[4] Leuthner eloquently describes the process of "negotiated" best interests of the child (by the parents).[5]

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.

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Guidelines

Overview

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 recent 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.[6]

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. [7]
  • "Guidelines on the termination of life-sustaining treatment and the care of the dying." The Hastings Center, 1987 [8]
  • 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. [9]
  • Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, Society of Obstetricians and Gynaecologists. Management of the woman with threatened birth of an infant of extremely low gestational age. Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, Society of Obstetricians and Gynaecologists of Canada. CMAJ. Sep 1 1994;151(5):547-53. [10]
  • MacDonald H. Perinatal care at the threshold of viability. Pediatrics. Nov 2002;110(5):1024-7. [11]
  • AAP Committee on Fetus and Newborn. Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns. Pediatrics. Feb 2007;119(2):401-3. [12]
  • Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues. Available at: http://nuffieldbioethics.org/project/neonatal-medicine/ . [2]

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) and the more recent National Institute of Child Health and Human Development (NICHD) calculator for prognosticating extremely low birth weight infant outcomes.[13]

Institution-specific data are of absolute import in providing informed guidance for parents and should complement prognostic efforts engendered by collective national data such as the NICHD calculator. To this end, a recent single-center study has revealed outcome data over the period 1998-2008 that has informed and changed their practice for extremely low birth weight infants.[14] 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.[15] 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 provide patients or their families a disservice.

Positive Aspects

Expertise

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.

Enabling

Guidelines enable professionals who previously have been constrained by 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 staffs and institutions to make responsible decisions with their patients' best interests at heart.

Empowering

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.

Encouraging

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.

Education

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

Basis on fact

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.

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Achieving the Good

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

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 NICU environment, where shared professional training, avowed determination to work for their patient's best interests, and experiences that would appear commonplace to all are present, a diversity in the concept of the good exists. This leads to instances 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, states 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.[16] 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.
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Conclusion

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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Contributor Information and Disclosures
Author

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.

Specialty Editor Board

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.

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.

Chief Editor

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.

Additional Contributors

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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