http://emedicine.medscape.com/article/978997-overview#showall
Retrieved 9/22/14
Ethical Issues in Neonatal Care
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Author: Brian S Carter, MD, FAAP; Chief Editor: Ted Rosenkrantz, MD
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 specialcare 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.
Ethical Questions
Questions about the ethical issues in neonatal care are as follows:
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"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. 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. 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.
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.[2]
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:
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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. Leuthner eloquently describes the process of "negotiated" best
interests of the child (by the parents).[3]
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.
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.[4]
Other guidelines of ethical import
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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.[5]
"Guidelines on the termination of life-sustaining treatment and the care of the dying." The Hastings
Center, 1987[6]
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.[7]
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.[8]
MacDonald H. Perinatal care at the threshold of viability. Pediatrics. Nov 2002;110(5):1024-7.[9]
AAP Committee on Fetus and Newborn. Noninitiation or Withdrawal of Intensive Care for High-Risk
Newborns. Pediatrics. Feb 2007;119(2):401-3.[10]
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. [11]
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. [12] 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.[13] 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:
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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.
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:
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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.[14] 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:
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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.
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.