Professional Documents
Culture Documents
Julianna Brauchle
Abstract
The care of extremely preterm infants and the ethical components that accompany that care has
been a questionable topic of debate for some time. At times, it can be difficult to differentiate
when it is time to forego treatment or when treatment is indicated. When determining care for an
infant on the verge of viability, whether to forego care or initiate care becomes an ethical
dilemma that the nurse plays an important role in. The nurse not only has a duty to the American
Nurses Association (ANA) Code of Ethics, they also have a duty in the care of their patients and
creating an ethically sound environment for the patient and their family. This paper details the
nursing considerations of caring for an extremely preterm infant, specific ethical dilemma
components of caring for extremely preterm infants, pros and cons of care, and also offers an
Keywords: extremely preterm infant, ethics, ethical dilemma, nursing care, nurse role
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 3
Pre-viable infants, or extremely preterm infants, are defined as being at 22 weeks of well-
2013). At 22 weeks gestation, it has been found that there is a rare chance of a good outcome,
however it is found that better outcomes come with a gestational age of 24 weeks (Chervenak &
McCullough, 2013). According to the World Health Organization, extremely preterm infants
range from 22 weeks to 28 weeks gestation, very preterm is defined as 28 to 32 weeks gestation,
and moderate to late preterm is considered 32 to 37 weeks gestation (World Health Organization,
2016). The care of infants that are extremely preterm or pre-viable is controversial among health
care professionals. There are a number of health care professionals that make up the health care
team involved in the primary care of the extremely preterm infant, which includes the nurse.
The nurse plays a crucial role in the care of an extremely preterm infant, and this care
must match up with the American Nurses Association (ANA) Code of Ethics. According to
Provision 3 of the ANA Code of Ethics (2015), “the nurse promotes, advocates for, and protects
the rights, health, and safety of the patient”. The nurse must be able to accurately and effectively
ensure that the patient’s family is aware of all medical information prior to making any life-
altering decisions, as with most care that comes before 24 weeks gestation may have an extreme
impact on the future life of the extremely preterm infant. This is also in accordance with
Provision 2 of the ANA Code of Ethics (2015), which states that the “nurse’s primary
This is important because the patient is an extremely preterm infant, so the family is making the
decisions. The nurse is advocating for the patient by ensuring that the family is fully educated on
Part of the ethical dilemma that is presented with extremely preterm infants is whether to
forego treatment or to initiate treatment as indicated. This not only impacts the family, it also
impacts the nurse and the type of care that is necessary for the nurse to provide. Not only is the
nurse responsible for actual physical care, but also for maintaining ethical care in these
situations.
Nursing Considerations
In many instances, the nurse is considered to be at the front line of patient care since they
are with the patient for the majority of the time the patient is in the hospital, and they provide a
large percentage of patient care. The nurse, in many instances, is the first person to notice when
something is wrong with the patient. The nurse caring for an extremely premature infant plays a
role in both the maintenance of an ethical environment and the actual physiological care of the
infant.
remember that the nurse holds an important position. Patient advocacy plays a large role in
nursing ethics. A patient, or in the case of an extremely preterm infant the family, should feel
completely informed prior to making a medical decision. The nurse’s advocacy role arises when
they act in interpreting information for the parents and answering any questions the family may
have in later discussions of patient care (Douglas & Dahnke, 2013). The nurse is also responsible
for creating a relationship of trust between caregivers and the family. This establishes a safe
place where the parents feel as though they can ask questions and speak freely about their
concerns regarding their child’s care. This also falls under advocacy because without the trusting
relationship where the family feels comfortable asking questions, the family may not actually be
Nurses provide many different types of care to patients who receive early intervention for
extremely premature infants. This includes the administration of probiotics to infants to reduce
the incidence of necrotizing enterocolitis (NEC). This is shown to “colonize the intestine with
beneficial bacteria and prevent colonization of pathogenic bacteria, which has been theorized to
contribute to the development of NEC” (Parker, 2012). Other important aspects of patient care
provided by the nurse includes thermoregulation, optimal positioning, airway clearance, stable
hemodynamic status, and adequate nutrition in order to maintain positive growth and
development (Joseph, 2015). For thermoregulation, it is important that the nurse assists the infant
in maintaining a stable body temperature because inadequate thermoregulation increases the risk
for “heat loss and resulting hypothermia which is more profound in preterm infants than in term
infants because of the preterm infants’ limited brown fat and immature heat-preserving
mechanisms” (Joseph, 2015). Nurses are also in charge of providing care to infants who are
receiving mechanical ventilation, which requires expertise in the practice. It is essential that
nurses are skilled in this care because around “50% of preterm infants with a gestational age of
24 to 28 weeks may require intubation and mechanical ventilation to maintain extrauterine life”
(Joseph, 2015).
Another aspect of nursing care includes palliative care. There are times when palliative
and bereavement care are indicated when there is an extremely premature infant. Palliative care
is described as being an approach that “improves the quality of life of patients facing life-
limiting conditions, and their families, through the prevention and relief of suffering by means of
early, impeccable assessment and treatment of pain and other physical, psychosocial, and
spiritual issues” (Kenner, Press, & Ryan, 2015). Bereavement care “focuses on the grief process
by providing interventions that support families after a fetal, neonatal, or infant loss, with the
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 6
goal of decreasing feelings of sorrow, psychosocial distress, and social isolation” (Kenner, Press,
& Ryan, 2015). Not only are these aspects important to care, a nurse may also need to coordinate
what the family’s wishes for resuscitation of their infant is in the incident of unanticipated loss.
Ethical Components
When looking at the ethical components considered with caring for an extremely preterm
infant, there are four main ethical considerations to keep in mind. The first ethical principal that
beneficence, along with nonmaleficence. Lastly, the fourth ethical component to take into
consideration is justice.
According to the ANA (2011), autonomy is defined as being the agreement to respect
another’s right to self-determine a course of action and to support this independent decision
making. This becomes an ethical dilemma because an extremely preterm infant is not able to act
autonomously. This means that the family then takes over decision making. This is also a
dilemma due to the fact that a lot of the care situations involved with an extremely premature
infant are emergent and the family is not always made entirely informed on the treatments prior
to them happening (Powell, Parker, Dedrick, Barrera, Salvo, Erdman, Huff, & Saunders, 2012).
Beneficence is defined as being compassion, taking positive action to help others, and
also the desire to do good when considering patient advocacy (ANA, 2011). This ethical
dilemma not only involves the nurse, but also involves the family. It can be applied to the act of
to the parents, as the parents are under the obligation of making decisions in the best interest of
their infant (Powell, Parker, Dedrick, Barrera, Salvo, Erdman, Huff, & Saunders, 2012). This can
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 7
be a very difficult decision for parents, as this single decision could have an impact on whether
As defined by the ANA (2011), nonmaleficence is the avoidance of harm or hurt to the
patient, and is the core of the medical oath and also the ethics of nursing in general. This specific
ethical principal is applicable to the scenario of care of the extremely preterm infant because it is
part of the consideration of what the next step is regarding care to the infant. When considering
what care should be given to the extremely preterm infant, “together with beneficence, the
healthcare provider must carefully weigh the benefits of providing life-sustaining care to infants
at the limits of viability while attempting to minimize harm to the patient” (Powell, Parker,
Dedrick, Barrera, Salvo, Erdman, Huff, & Saunders, 2012). This can be difficult when looking at
what a parent wishes, and what is in the best interest of the patient.
Lastly, justice is defined by the ANA (2011) as the “fair and equal distribution of
resources, based on analysis of benefits and burdens of decisions”. When applying this to the
care of an extremely preterm infant, it is important to note that this principal means that a
provider cannot make treatment decisions based upon an infant’s race, ethnicity, or the ability of
the family to pay for the treatments (Powell, Parker, Dedrick, Barrera, Salvo, Erdman, Huff, &
Saunders, 2012). It is also applicable to the principal that exploitation is relevant as it occurs “in
a population of patients when a small percentage experience, as the outcome of clinical care,
significant benefit with little or no clinical harm but a much larger percentage experience
significant clinical harm- such as death and disability” (Chervenak & McCullough, 2013).
Justice is a difficult ethical principal to maintain due to exploitation specifically, as each provider
must work under the basis that each patient has the equal rights due to them, however when the
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 8
outcome is poor for some and good for others, it may not seem as though justice is served
In a study done Rysavy, Li, Bell, Da, Carlo, Shankaran, … & Higgins (2015), it was
found that there are variations between practices and policies across healthcare systems
regarding the initiation of active treatments in extremely preterm infants, which explains some of
the between-hospital variation in survival. It was found in this study that “all infants who did not
receive active treatment died within 24 hours after birth… and among those who received active
treatment 65% survived” (Rysavy, Li, Bell, Da, Carlo, Shankaran, … & Higgins, 2015). This
could be considered a high success rate, and one reason as to why the care of extremely preterm
Not only has it been found that a large majority of patients are surviving, it has also been
found that there is a large chance that patients can lead a relatively unimpaired life. It was found
survival in a substantial amount of cases; most cases will not experience profound cases of
cognitive disability” (Chervenak, McCullough, 2013). This is a step in the right direction
because it shows that intervention is beneficial, rather than detrimental to the infant.
On a more global scale, one benefit of providing care to extremely premature infants
would be that due to making a record of the care provided to the infant, healthcare providers are
furthering the medical field. Through every medical intervention and surgery, medicine is
furthering science and opening up potential routes for care that can benefit society in providing
better outcomes for extremely premature infants. This is a giant step in the right direction of
When treating extremely premature infants, there are a few bad factors that need to be
taken under consideration. First and foremost, preforming invasive procedures that could be
potentially harmful to the patient. With children, it can be sometimes difficult to tell how much
pain you are causing, especially when they are not able to tell you. One of the biggest cons to
this would be the amount of pain and stress procedures put on the body. As healthcare providers
continue to push the boundaries of science, there is a limit to what can be accomplished. There is
still speculation that “current technology cannot replace or augment the natural embryological
developed and mature to support life there is a big difference between viability, vitality, and
sustainability” (Crawford & McLean, 2010). At a certain point, healthcare providers are
damaging the natural processes by intervening, which can be detrimental to the infant.
Another pitfall to treating extremely premature infants is the amount of infants who
survive, but live with severe impairment. According to one article, out of 4,704 children, only
“40.8% survived without severe or moderate neurodevelopmental impairment” (Rysavy, Li, Bell,
Da, Carlo, Shankaran, … & Higgins, 2015). In another study done, “out of the 138 infants of 22-
23 weeks gestation who showed signs of life at birth, only two survived to be discharged from
the hospital, one with severe disability and the other with what was regarded as a minor
impairment” (Crawford & McLean, 2010). When looking at these statistics, the conclusion can
be drawn that early intervention does not always assist in the quality of life for extremely
preterm infants.
Lastly, it was found in a literature review that “moral distress affects the care of patients
in the NICU and PICU” (Prentice, Janvier, Gillam, & Davis, 2016). Moral distress stems from
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 10
“disproportionate interventions perceived not to be in the child’s best interests, often with a
negative ethical climate” (Prentice, Janvier, Gillam, & Davis, 2016). Moral distress is potentially
hazardous to the possible good outcomes stemming from the care of extremely preterm infants,
Author’s Opinion
When deciding whether providing care to an extremely preterm infant is ethical or not,
there are a lot of factors to take into consideration. In the end, providing care is ethical. As nurses
and medical professionals, it is important to provide the best care to benefit the patient and to
give the patient the best possible outcome. In order to provide the best care and advocate for your
patient to the fullest extent, it would be unethical to not at the very least attempt to provide life-
Conclusion
In conclusion, there are many different aspects that go into evaluating whether a topic is
ethical or not. Looking at all aspects of the topic of the care of extremely premature infants, such
as the topic in general, nursing considerations, specific ethical dilemma considerations, pros and
cons, and an individualized personal opinion, it is easy to form a personal opinion on the subject
matter. Whether or not to intervene and provide care for extremely premature infants remains a
sensitive topic of debate, and will more than likely remain a hot topic in times to come.
References
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CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 11
American Nurses Association. (2011). Short definitions of ethical principles and theories
http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Resources/Ethics-
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Prentice, T., Janvier, A., Gillam, L., & Davis, P. G. (2016). Moral distress within neonatal and
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