Running head: WITHDRAWAL OF LIFE SUSTAINING TREATMENT 1

Withdrawal of Life Sustaining Treatment in Neonates

Jenny E. Quintero

Mebin M. Kuriakose

University of California Irvine

WITHDRAWAL OF LIFE SUSTAINING TREATMENT 2

Withdrawal of Life Sustaining Treatment in Neonates

An amniotic fluid embolism (AFE) is an unpredictable rare childbirth catastrophe where

the amniotic fluid, fetal cells, or other debris leak into the mother’s bloodstream during delivery

causing rapid respiratory failure and cardiovascular collapse in the mother (Kaur, Kumar, Singh,

& Singhal, 2016). AFE may prove fatal to both mother and infant (Kaur et al., 2016). The

leakage of fluid through the uterine membrane can put infants at an increased risk of organ

failure and long-term neurological damage due to hypoxic injuries (Kaur et al., 2016). In the case

of Baby Sherman, an intrapartum AFE resulted in anoxia and hypoxic insult to all of his organs.

Baby Sherman remains unconscious in the NICU and is failing to respond to the given

treatments. Consequently, the parents have indicated their desire to withdraw artificial nutrition

and hydration (Butts & Rich, 2005). The ethical dilemma posed to the nurse is whether to respect

the parents’ right to refuse treatment or to continue life sustaining measures in beneficence to the

neonate. This paper will argue in support of the parents’ full autonomy to provide the neonate

with the greatest comfort possible through the dying process.

In this paper, we will first discuss the clinical aspect of an amniotic fluid embolism and

its various outcomes and treatments for the mother and infant. We will then elaborate on the two

opposing ethical decisions which are to either withdraw or continue nutrition and hydration as

life sustaining treatment. We will then explain our ethical decision-making process on choosing

to withdraw treatment and the associated nursing responsibilities.

Clinical Problem

Amniotic fluid embolism (AFE) is a rare, unpredictable, and sometimes fatal

complication of pregnancy which often results in cardiac arrest and death (McBride, 2018). AFE

has been estimated to occur between one in 8000 and one in 80,000 deliveries (Kaur et al.,
WITHDRAWAL OF LIFE SUSTAINING TREATMENT 3

2016). Although diagnosis of AFE is now made promptly and intensive critical care is available,

maternal mortality deaths are estimated to be as high as 80% (Kanayama & Tamura, 2014). The

etiology of AFE remains largely unknown but may occur in healthy women during the second

trimester of pregnancy, labor, cesarean section, or abortion (Kaur et al., 2016). It may also occur

immediately after a normal vaginal delivery, or up to 48 hours post-delivery (Kaur et al., 2016).

AFE is believed to be caused by a breach between the maternal and fetal circulations

through the uterine cervical vein or the placenta, resulting in entry of amniotic fluid, fetal cells,

or debris into the maternal blood system (McBride, 2018). However, any condition that

facilitates the entry of amniotic components into the maternal blood—such as amniocentesis,

laceration during delivery, uterine scarring, cesarean section, placenta previa, etc.—can be

regarded as a risk for developing AFE (Kanayama & Tamura, 2014).

Symptoms of AFE are often sudden and involve pulmonary hypertension that leads to

right ventricular failure, hypoxia, and cardiac arrest (Kaur et al., 2016). However, other signs and

symptoms such as dyspnea, hypotension, cyanosis, and coagulopathy or severe hemorrhage are

all indicative of possible AFE (Kaur et al., 2016). Not all symptoms always manifest themselves,

nonetheless “to diagnose AFE, four criteria must be present: acute hypotension or cardiac arrest,

acute hypoxia, coagulopathy or severe hemorrhage, and all of these must be occurring during

labor or postpartum in absence of other explanations” (Kaur et al., 2016, p.156).

Management of AFE focuses on rapid resuscitation and delivery of the baby, and if

spontaneous circulation returns, the focus becomes the reversal of hypoxia and hypotension and

correction of coagulopathy (McBride, 2018). The prognosis after AFE is poor and infants who

survive the embolism experience severe neurological damage and can sometimes be permanent

in up to two-thirds of survivors (Kaur et al., 2016). Beside neurological impairment, survivors

WITHDRAWAL OF LIFE SUSTAINING TREATMENT 4

may present severe sequelae such as acute renal failure, cardiac failure, arrhythmias, pulmonary

edema and bronchospasms (Kaur et al., 2016). In addition to physical recovery, women can

experience anxiety, depression, isolation, and flashbacks that can have lasting consequences that

negatively impact the maternal, and thus infant and family wellbeing (Hinton, Locock, & Knight,

2015). These women often are advised to seek psychological help (Hinton et al., 2015).

AFE also compromises the fetus when it develops during the antepartum or intrapartum

period (Clark, 2014). During AFE, oxygenated blood is shunted to the mother’s vital organs and

away from the uterus and placenta which causes fetal distress (Clark, 2014). Perinatal asphyxia

(PA), which can be defined as impaired respiratory gas exchange accompanied by acidosis, may

have its onset in the antepartum or intrapartum period (as AFE is occurring in the mother) (Van

Handel, Swaab, De Vries, & Jongmans, 2007). Indicators of PA include fetal distress, delay in

onset of spontaneous respiration, acidosis, Apgar score lower than 6, and the need for

resuscitation and/or ventilation (Van Handel et al., 2007).

The Apgar score is a method used for reporting the status of a newborn immediately after

birth (American Academy of Pediatrics [AAP], 2015). The Apgar score gives a rating of zero,

one, or two to each of five components depending on whether or not they are present

(Ehrenstein, 2009). The five components are heart rate, respiratory effort, muscle tone, reflex

irritability, and color (Ehrenstein, 2009). The score is reported one and five minutes after birth

for all infants (AAP, 2015). An Apgar score of 7-10 is high (usually reassuring), a score of 4-6 is

intermediate (moderately concerning), and a score of 0-3 is low (extremely concerning) and may

be one of the first indications of encephalopathy (AAP, 2015).

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Ethical Dilemma

The patient, Baby Sherman, suffered an AFE and sustained hypoxic injury to all organs

which placed him in the NICU where he remains unresponsive and is currently on artificial

nutrition and hydration. His parents expressed their wish to withdraw treatment putting the nurse

manager in a difficult situation to reconcile an ethical dilemma. An ethical dilemma is defined as

when an individual must choose between “two or more mutually exclusive, morally correct”

decisions (Jie, 2015, p. 410). Baby Sherman’s case presents the nurse manager with two mutually

exclusive moral options. If the nurse manager continues life support, the neonate will still have a

chance at survival, but the decision will compromise the autonomy and trust of the parents. If the

nurse manager discontinues life support, the parent’s decision is respected allowing space for

empathetic measures, but this violates a nurse’s duty to prevent harm to the patient. Thus, the two

overarching ethical principles competing in this scenario, autonomy and beneficence, are what

gives rise to the ethical dilemma. Therefore, the dilemma can be labeled as ‘whether or not the

nurse manager and staff should continue life support on the neonate’. Either ethical decision is a

hard course of action to execute. However, we will delve into both options and decide which is

the best choice for all persons involved.

Argument for Continuing Life Sustaining Treatment

In the case of sustaining parenteral nutrition, the nurse would disregard the parents’

autonomy as the legal decision makers for their child. It would be reasonable to question whether

the parents are making an informed decision, and whether they are truly acting based on the

child’s best interest. It would also be reasonable to believe that the mother’s judgment may be

impaired after suffering from AFE. Psychiatric disorders—such as anxiety and depression which

often follow AFE—affect the decision-making capacity (DMC) (Hindmarch, Hotopf, & Owen,
WITHDRAWAL OF LIFE SUSTAINING TREATMENT 6

2013). Depression negatively affects all four of the abilities assessed when determining DMC:

understanding, appreciating, reasoning, and ability to express a choice (Hindmarch et al., 2013).

As established by the American Nurses Association (2015a), “when patient choices are risky or

self-destructive, nurses have an obligation to address the behavior and to offer resources to

modify the behavior or to eradicate the risk” (p. 464). In this case, it is the parents’ choices—

although they have the legal right to make decisions for their child—that are potentially

detrimental for the patient.

Another reason that may incline the nurse to sustain artificial nutrition and hydration is an

effort to support beneficence and nonmaleficence which justify the current treatment.

Withdrawing artificial nutrition and hydration from the infant appears to have the purpose of

hastening death. Removing the basic human right of nutrition goes against the provision that a

nurse promotes, advocates for, and protects the rights of a patient (American Nurses Association

[ANA], 2015a). Even if the infant’s prognosis is poor based on the expected outcomes that

follow PA, infants in Sherman’s case are expected to have a certain degree of morbidity but the

condition is not necessarily fatal (Van Handel et al., 2007). Perhaps the parents do not want the

burden of caring for a disabled child. However, disability itself is not a sufficient reason to

withdraw medically provided nutrition and hydration (Botkin & Diekema, 2009). Although Baby

Sherman remains unconscious, he has already been weaned from the ventilator and his diagnosis

has not been established. Even if his prognosis is poor, there is no predictor of what will actually

happen to Baby Sherman. Therefore, sustaining nutrition and hydration is beneficial while the

diagnosis remains uncertain and treatment is provided in hopes of recovery (Botkin & Diekema,

2009).
WITHDRAWAL OF LIFE SUSTAINING TREATMENT 7

Argument for Discontinuing Life Sustaining Treatment

As mentioned before, the nurse manager can also choose to adhere to the bioethical

principle of autonomy and accept the parents’ decision. According to provision 1.4 of the

American Nurses Association’s Code of Ethics (COE), it is imperative for nursing staff to

advocate for autonomy and preserve the parent’s right to self-determination (ANA, 2015a).

Autonomy gives individuals the ability to reasonably self-direct and govern their healthcare

choices without external limitations. Withdrawing nutrition and hydration will ultimately afford

the Shermans this autonomy and allows them a sense of dignity and respect. As a nurse we must

recognize that “the parents’ views are determinative unless they conflict seriously with the

child’s best interest” (Tripp & McGregor, 2006, p.69). Provision 1.4 of the COE states parents

have the right to be offered necessary support along the decision making process and be assisted

with weighing treatment options (ANA, 2015a). Furthermore, this support may help play a role

in mitigating some of the parents’ guilt (Tripp & McGregor, 2006).

A consequentialist approach with utilitarianism implores us to base our ethical decision

on what will bring about the greatest amount of happiness and the least amount of suffering to

the greatest amount of people (Jie, 2015). Applying such a theory indicates that we should

indeed withdraw life support from the infant which would alleviate the pain and suffering of the

family. Although the infant is harmed, it is incomparable to the amount of devastation and false

hope that could be potentially prolonged for the members of the family (Jie, 2015). This decision

would also decrease the pain of the Baby Sherman if he were to survive since he would have to

live an arduous life dealing with the defects of hypoxic brain injuries. If life sustaining measures

were continued, only Baby Sherman would be benefiting which contradicts the idea of

maximizing pleasure (Jie, 2015).

WITHDRAWAL OF LIFE SUSTAINING TREATMENT 8

We also should consider the medical reality of surviving the effects of an amniotic fluid

embolism. To start, the mortality rate for infants with an Apgar score of 0 can be as high as 97%

(Viau et al., 2015). Perinatal hypoxia-ischemia related to AFE can lead to serious long-term

neurological defects including but not limited to mental retardation, cerebral palsy, and severe

loss of motor function (Martinez-Biarge et al., 2011). Additionally, treatment for the

unresponsive Baby Sherman in the given scenario is only proving to sustain minimum life

conditions and not improving his outcome. Nutrition and hydration tubing are now only serving

as a barrier for his parents to solemnly prepare a proper goodbye. For our scenario, it is

medically reasonable to assume that hydration and nutrition as an intervention is no longer

benefiting the patient and the burdens of the intervention outweigh its benefits (Diekema &

Botkin, 2009).

Ethical Decision and Justification

In our given scenario, we believe the best course of action as the nurse manager is to

respect and advocate for the parent’s autonomous decision to withdraw life-sustaining measures

from the infant. Understanding that each option has unique pros and cons, we chose to prioritize

the fundamentals of autonomy and utilitarianism in conjunction with medical research to work

collaboratively with the patient’s family. When contemplating and ultimately choosing to

withdraw life support, the nurse manager should follow a structured decision-making process

centered around the patient (Carter & Leuthner, 2003). The process should first identify and

include all relevant decision makers, consider the medical reasonability, and finally set out

nursing responsibilities to execute the decision (Carter & Leuthner, 2003).

The decision makers in this scenario are the parents and the healthcare team. One of the

concerns associated with the withdrawal of treatment was whether or not the parents, specifically
WITHDRAWAL OF LIFE SUSTAINING TREATMENT 9

the mother, were making an informed decision, and whether the mother’s decision making

capacity was impaired due to her condition in the aftermath of suffering from the AFE. However,

applying the principle of autonomy to this scenario implies that the decision is based on “(1)

individual’s values and (2) reason and deliberation” (Chitty & Black, 2011, p. 97). As the nurse

manager, we should instead assume parents have their child’s best interest in mind and simply

provide the parents with thorough resources of information and provide education as is part of

her duty to the patient (ANA, 2015b). Acknowledging the parents’ decision in this manner will

then allow us to cater our treatment plan and values towards the “physical, psychosocial, and

spiritual needs” of the parents and not the illness (Niemeyer-Guimarães & Schramm, 2017, p.3).

The nurse manager should also play a primary role in coordinating and maintaining the

relationship between the family and all healthcare staff (ANA, 2015a). It is evident that a

collaborative effort between parents and healthcare staff is in the best interest of the patient.

The medical line of reasoning to forgo life sustaining treatment in this scenario can be

justified “if the surrogate decision maker, in consultation with the physician, has come to the

conclusion that the expected burdens of the intervention to the patient exceed the potential

benefit to the patient” (Botkin & Diekema, 2009, p.816). We can reasonably assume the current

treatment for Baby Sherman is not improving his health outcomes and continuing treatment will

only further illicit pain and sorrow in the parents and other family members. Therefore,

providing nutrition and hydration as a source of life support would not be considered as a

potential benefit to the patient and the expected burdens would outweigh it. Therefore, upon

passing the one condition, the decision to withdraw treatment is now “ethically permissible, but

not ethically required” (Botkin & Diekema, 2009, p.819). In other words, we must acknowledge
WITHDRAWAL OF LIFE SUSTAINING TREATMENT 10

that both options still have its merits and the discretion to make a choice ultimately lies with the

parents, which in this case have opted to withdraw (Botkin & Diekema, 2009).

Finally, the strategic nursing plan for end of life care should focus on comfort and

palliative measures for the infant as well as positive support for the family while also abiding to

the American Nurses Association’s position statement on providing end of life care (ANA,

2015c). As the nurse manager, we should be competent enough to first recognize symptoms and

conditions of impending death and relaying pertinent information to the family (ANA, 2015c).

We should also ensure certain goals are set alongside the parents to determine what care should

be provided and expected. For example, surveyed parents in similar situations have expressed

concern that after withdrawing support, the dying process should not be too long (Fournier,

Belghiti, Brunet, & Spranzi, 2017). It is our duty to educate the family on potential side effects

and support them through the mourning process.

Conclusion

AFE is an extremely rare and tragic complication during childbirth where amniotic debris

leaks into the mother’s circulation. Not only is this event potentially fatal for the mother, it can

cause major life threatening injuries and long-term debilitating effects for the infant. In our case

study, Baby Sherman experienced hypoxic ischemia in all organs due to an AFE which left him

in the NICU with no effective treatment options and an Apgar score of 0. Consequently, the grief

stricken parents have requested to withdraw life sustaining treatment. As a result, the ethical

dilemma is brought about when the nurse manager must decide to either accept the request and

withdraw life support or act in beneficence to the patient and continue with the treatment.

We ultimately decided to value parental autonomy by withdrawing life support from the

infant in a strategic manner over beneficence and nonmaleficence towards the patient. As the
WITHDRAWAL OF LIFE SUSTAINING TREATMENT 11

nurse manager, we believed that the situation at hand afforded this decision ethical validation

and medical reasonability. We believe that it was in the infant’s best interest to focus on

palliative measures instead of continuing treatment and entering a grey area of uncertain

outcomes. Following this decision, we would also be able to build further trust and support for

the family. This decision is indicative of how nursing as a profession is held accountable through

our dedication and commitment to the family in collaboration with the healthcare team.
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