Running head: CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 1

Care of Extremely Preterm Infants: Ethical Dilemmas

Julianna Brauchle

Cedar Crest College

CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 2

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

individualized opinion on the ethicality of extremely preterm infant nursing care.

Keywords: extremely preterm infant, ethics, ethical dilemma, nursing care, nurse role
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 3

Care of Extremely Preterm Infants: Ethical Dilemmas

Pre-viable infants, or extremely preterm infants, are defined as being at 22 weeks of well-

documented gestational age up to 24 weeks of gestational age (Chervenak & McCullough,

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

commitment is to the patient, whether an individual, family, group, community, or population”.

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

any decisions they are making.

CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 4

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.

When considering the maintenance of an ethical environment, it is important to

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

fully informed prior to making a decision.

CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 5

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

should be taken into consideration would be autonomy. Another ethical consideration is

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

resuscitating an infant in consideration to the healthcare providers. However, it is also applicable

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

or not their child lives or dies.

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

equally to all patients.

Pros of Providing Care

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

infants is ethically sound.

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

that at 24 weeks of well-documented gestation “current evidence supports the expectation of

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

saving infants in a way that was never available to families before.

CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 9

Cons to Providing Care

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

developmental sequencing; if the systems of circulation and oxygenation are insufficiently

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,

making it a con to nursing care for extremely premature 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-

altering measures in an attempt to give your patient 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

American Nurses Association. (2015, January). Code of ethics for nurses with interpretive

statements (View only for members and non-members). Retrieved November 01, 2017,

from http://nursingworld.org/DocumentVault/Ethics-1/Code-of-Ethics-for-Nurses.html
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 11

American Nurses Association. (2011). Short definitions of ethical principles and theories

familiar words, what do they mean? Retrieved November 1, 2017, from

http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Resources/Ethics-

Definitions.pdf

Chervenak, F. A., & Mccullough, L. B. (2013). Ethical issues in periviable birth. Seminars in

Perinatology,37(6), 422-425. doi:10.1053/j.semperi.2013.06.027

Crawford, D., & Mclean, M. (2010). The care of the pre-viable and questionably viable infant –

A midwife and a neonatal nurse dilemma. Journal of Neonatal Nursing,16(2), 53-57.

doi:10.1016/j.jnn.2010.01.014

Douglas, S. M., & Dahnke, M. D. (2013). Creating an ethical environment for parents and health

providers dealing with the treatment dilemmas of neonates at the edge of

viability. Journal of Neonatal Nursing,19(1), 33-37. doi:10.1016/j.jnn.2012.03.012

Joseph, R. A. (2015). Prolonged mechanical ventilation: Challenges to nurses and outcome in

extremely preterm babies. Critical Care Nurse,35(4), 58-66. doi:10.4037/ccn2015396

Kenner, C., Press, J., & Ryan, D. (2015). Recommendations for palliative and bereavement care

in the NICU: a family-centered integrative approach. Journal of Perinatology,35.

doi:10.1038/jp.2015.145

Parker, L. A. (2012). Current controversies in neonatal care. Newborn and Infant Nursing

Reviews,12(1), 21-26. doi:10.1053/j.nainr.2011.12.009

Powell, T. L., Parker, L., Dedrick, C. F., Barrera, C. M., Salvo, D. D., Erdman, F., . . . Saunders,

M. (2012). Decisions and dilemmas related to resuscitation of infants born on the verge

of viability. Newborn and Infant Nursing Reviews,12(1), 27-32.

doi:10.1053/j.nainr.2011.12.004
CARE OF EXTREMELY PRETERM INFANTS: ETHICAL DILEMMAS 12

Prentice, T., Janvier, A., Gillam, L., & Davis, P. G. (2016). Moral distress within neonatal and

paediatric intensive care units: a systematic review. Archives of Disease in

Childhood,101(8), 701-708. doi:10.1136/archdischild-2015-309410

Rysavy, M. A., Li, L., Bell, E. F., Das, A., Hintz, S. R., Stoll, B. J., . . . Higgins, R. D. (2015).

Between-hospital variation in treatment and outcomes in extremely preterm infants. New

England Journal of Medicine,372(19), 1801-1811. doi:10.1056/nejmx150023

World Health Organization. (2016, November). Preterm birth. Retrieved November 01, 2017,

from http://www.who.int/mediacentre/factsheets/fs363/en/