Dealing With Death in the NICU -- A Conversation With

Neonatal Palliative Care Expert Anita Catlin

Laura A. Stokowski, RN, MS
Posted: 01/29/2010
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth

- Robert Frost, "The Road Not Taken"

Palliative Care and the NICU

Palliative care has come a long way in recent years. Nowhere is this more true than in the neonatal
intensive care unit (NICU), where the very idea of death is incongruent with the reason for the unit's
existence: to sustain life in newborn infants who otherwise might die on the day of their birth.

In many ways, the NICU has become a victim of its own success. Over time, smaller and more immature
babies have survived, giving rise to the expectation that this trend can continue indefinitely. Consider the
story of Helen and Evangeline.

Helen and Evangeline were 24-week dizygotic twins, conceived with assisted reproductive technology and
born by cesarean delivery to a 44-year-old single mother, Nicole. Nicole was placed on bedrest at 21
weeks' gestation for preterm labor and received tocolytic therapy in an attempt to halt her contractions. She
also received a course of antepartum corticosteroids to speed up maturation of the fetal lungs.

Nicole had pregnancy-induced hypertension that did not respond well to treatment. Furthermore, at 24
weeks, her labor progressed and the decision was made to deliver the twins. A neonatologist went to
Nicole's room to discuss what might occur in the delivery room, issues regarding viability and resuscitation,
and facts about prognosis for extremely preterm infants born at gestational ages comparable to Nicole's
infants. Nicole was adamant that she wanted the babies to be resuscitated if they were born alive. At her
age and considering everything she had gone through to become pregnant, Nicole insisted that this was
her last chance to have children.

The biggest misunderstanding about palliative care is that it is just about dying, and giving up on a patient.
To the contrary, palliative care is about quality of life, regardless of how long that life might be. Catlin and
Carter[1] offer this definition of neonatal palliative care:

Palliative care for newborns is holistic and extensive care for an infant who is not going to "get better."
Palliative care focuses on both the infant and his or her family. Palliative care may initially be combined
with cure-oriented, disease-modifying care and then intensify when that form of care is no longer helpful or
appropriate. Palliative care is an entire milieu of care to prevent and relieve infant suffering and improve the
conditions of the infant's living and dying. It is a team approach to relieving the physical, psychological,
social, emotional, and spiritual suffering of the dying infant and the family. Palliative care focuses on the
prevention and relief of physical pain and suffering for the infant and on relief of existential suffering of the
family. It is a planned intervention by trained interdisciplinary staff members who support with dignity the
infant's time on earth and support the family's experience with empathy and culturally sensitive respect.

Today as in the past, most infant deaths occur in the hospital, and most hospitals do not have access to
formal palliative care services, especially for neonates. Many NICUs do not even have palliative care
protocols to guide the neonatal team in planning end-of-life care for terminally ill infants.
I had the opportunity to speak with Anita Catlin, an internationally known scholar, leader, and consultant in
neonatal palliative care, ethical issues, and decision-making. We talked about the current state of palliative
care in neonatal intensive care, and I asked her about some of the most frequent sources of uncertainty
voiced by neonatal nurses.

When Does Curative Care End and Palliative Care Begin?

Twin A, Evangeline, weighing 535 g, had respiratory effort at birth, was intubated, received surfactant, and
was transferred to the NICU. Helen (twin B) weighing 510 g, did not fare as well. She was limp and apneic
at birth; however, she too was intubated and transferred to the NICU. Helen's axillary temperature on
admission to the NICU was unmeasurable, and her skin was heavily bruised. During the next 3 days, both
infants remained on mechanical ventilation and received treatment for hypotension. Evangeline was
relatively stable, but Helen had persistent hypotension and acidosis, and a cranial ultrasound revealed
large bilateral intraventricular hemorrhages. A patent ductus arteriosus (PDA) was diagnosed in Helen, but
a course of ibuprofen was not successful in closing her ductus. A cardiologist recommended a PDA
ligation. However, by this time, Helen was severely hypotensive despite aggressive therapy, and was
exhibiting frequent arterial oxygen desaturation. Although Helen would not survive without closure of her
PDA, it was also clear that Helen was not a good operative candidate. Nevertheless, in spite of candid
disclosure of Helen's prognosis by the neonatal team, Nicole, who was slowly recovering from the
cesarean delivery, expressed her desire for Helen's surgery to proceed.

First, Dr. Catlin defined curative care:

Curative care is revision or remediation of a given prognosis via the use of medications and therapies that
can alter the condition. Curative care for the neonate includes ventilatory support, oxygen administration,
thermoregulation, skin protection and prevention of infection, blood pressure support, neuroprotection
(including seizure control), nutritional support, pain management, and surgery, extracorporeal membrane
oxygenation, or other measures indicated by specific neonatal problems. It also includes resuscitation or
"treatment escalation" whenever the infant deteriorates despite support that is already being given.

Palliative care is when cure-oriented goals are replaced with comfort-oriented goals. There is an obvious
overlap between curative and palliative care. Many of the same interventions are used for both, but they
may be used differently, and with different goals. The strategy recommended for the critically ill neonate is
to introduce palliative care at the same time as curative care.[2] With this model, caregivers can achieve a
transition between the curative-palliative to a purely palliative approach at the appropriate time, when
caregivers, or families, or both, realize that the baby is not getting better and is not going to get better. Dr.
Catlin calls the point when caregivers or families, or both, realize that the baby has a life-limiting condition
or that curative efforts are no longer effective the "fork in the road," a threshold point. When the fork in the
road is reached, purely palliative care takes over.

The problem, notes Dr. Catlin, is that this doesn't often happen seamlessly in practice. The fork in the road
is reached, and passed, and curative care continues until, and usually beyond, the point where it is no
longer appropriate. Caregivers and families may be confounded about when and how to transition to purely
palliative, end-of-life care. Dr. Catlin suggests remembering a few simple facts that might help make
decisions at the fork in the road:

1. All appropriate curative attempts that can be tried have been tried.
2. Physiologic processes cannot be altered.
3. Altering the physiology will not change the lethal prognosis.
4. There are specific infants who are, in fact, going to die, and a dying infant is not a reflection of
neonatal provider failure.
Catlin reiterates the last point, because this is where many professionals get stuck, so to speak. It is not
just the parents but also the caregivers who often have a hard time with what they may view as "giving up"
because it seems like failure. These feelings can inadvertently be communicated to families, and the result
is that no one is on board regarding palliative care. So instead of comforting, cuddling, and nurturing,
explains Dr. Catlin, the infant receives continued high-tech, movement-restricting, painful treatments that
effectively put a barrier between parents and their dying infants.

Healthcare professionals who proceed with potentially futile care need to do so with their eyes open. Once
aggressive curative care has begun, professionals may feel trapped into continuing these interventions.
Baergen[3] cautions that there is an "enormous psychological difference between withdrawing a treatment
and not starting it in the first place."

Helen's nurses and physicians held a meeting with Nicole and her support person, her older sister. With
sensitivity and candor, the attending neonatologist explained to Nicole that Helen was unlikely to survive
with or without the PDA ligation and the surgery would only add to and prolong Helen's suffering. It was
suggested to Nicole that rather than embark on an aggressive treatment such as surgery, they should
concentrate on relieving Helen's pain and making the rest of her short life the best possible experience for
both of them. The team explained to Nicole the measures that would be used to provide palliative care for
Helen.

Without palliative care to "take over," so to speak, the decision to end curative care becomes almost
impossible to make. This is clear from looking at the history of futile care in the NICU. Before palliative care
came on the scene as a reasonable and acceptable way to end futile intervention for neonates with little or
no chance of survival, we vacillated between making decisions to withdraw interventions for families and
putting the entire responsibility of decision-making in parental laps. Neither of these strategies has been
successful, and we realize that the best approach is a partnership between caregivers and parents to
address a transition to palliative care. Although the question of "who decides" has not been fully answered,
the option of palliative care makes that decision a marginally easier one.

Talking With Parents About End-of-Life Care

Many healthcare professionals (in addition to nurses) find it uncomfortable to openly discuss death. Few
have received formal palliative education in their basic nursing or medical education; some may think that
palliative care is basically just having a do-not-resuscitate order. Wishing to initiate this conversation with
the parents, they watch for the "right time" that never arrives. Others simply believe that it is someone
else's responsibility to initiate talks with parents about ending curative care.

Some things that parents say to us are barriers to opening communication about palliative care. Who
among neonatal nurses has not experienced the parent who speaks of hoping for a miracle, no matter how
clear we think we have been regarding the infant's prognosis?

I asked Dr. Catlin about the parents who have been apprised of their infant's chances, including both
survival and possibility of long-term morbidity, but who respond that they are hoping for a miracle. In some
instances, this hope can encourage parents to ask for or agree to aggressive treatments that have little
chance of success but that will probably postpone death and increase suffering. Some nurses may share
the opinion that it is wrong to "take away the parents' hope," usually with the justification that we can't
possibly understand what it's like to be in their position. Are we overempathizing with such parents?

Dr. Catlin responded that Ralph Baergen addresses this issue in his article, "How Hopeful is Too Hopeful?
Responding to Unreasonably Optimistic Parents."[3] The author delineates some of the clues that might
indicate that parents are not being realistic about their child's condition and future:
 The belief that anything less than insisting that everything possible be done makes them bad
parents;
The view that stopping treatment is abandonment of their baby;
The misunderstanding that it is the withdrawing of treatment that causes death, rather than the
underlying condition or disease;
A belief that only God can determine the time of death;
Tendency to take advantage of the uncertainty of medicine -- where there is doubt there is hope-.
The opinion that agreeing to limiting care (denying belief in a miracle) suggests they question their
faith; and
Plain old denial.

Baergen points out that parents who believe in miracles or divine intervention are unlikely to be swayed by
medical science. However, unreasonable hope can undermine the parents' ability to make decisions. If not
addressed, unreasonable hope can "rob dying children and their families of the benefits of hospice
programs, of the best in symptom control, and of the opportunity to make the most of the time that
remains."[3]

It is the job of healthcare professionals to identify and carefully and sympathetically address unreasonable
hope, and not just wait for the parents to "come around." Baergen suggests that an unreasonable "hope for
a cure" can be sensitively transformed into hopes for relief of suffering, for good weeks or days before the
end, or for love and care in the time that remains. In other words, the objective is not to devastate the
parents' hopes, but to replace it with different "hopes."[3]

Other barriers to palliative care have arisen in the current information age. The media have so often
extolled the promise of modern technology that many parents believe that there is a treatment for
everything, that everything can be corrected, and that every baby can be saved.[1] Television programs
reinforce this, holding back only when the grief story is bigger than the doctor-as-hero story. The healthcare
profession also contributes to this problem by referring to what it does as "medical care" or "nursing care."
People link care with treatment, so that when we discuss withdrawing treatment (care), it leads people to
believe we no longer "care" or are abandoning their infant.[3]

In other ways, the healthcare professional's choice of words when communicating with parents can
influence their acceptance of the message. Carter points out that saying to families, "There is nothing more
we can do for your baby," is "at best a poor choice of words and at worst, not true." There is always more
that healthcare professionals can do, such as relieve discomfort and suffering, and ease the child's death.[4]

Sometimes, caregivers become impatient with parents who don't seem to "get it." Educating parents about
the need for palliative care can be a frustratingly slow process, but, as Baergen points out, "there is no
other way to help them make informed, reasonable decisions."[3]

A related issue is parents who don't seem to remember what they have already been told. For the sake of
all, it is important that conversations about palliative care receive extra attention with regard to process.
Alternatives include audio-recording conversations about palliative care, or asking parents to bring a
trusted but less emotionally involved friend to the meeting so that information the parents are unable to
process may be heard by an interested party who may be able to help the parents understand it later on.

The Focus Must Remain on the Infant

In the family meeting about palliative care for Helen, Nicole was clearly unhappy with the facts that were
presented to her. Although she acknowledged that Helen's prognosis was "not as good as Evangeline's,"
Nicole continued to insist that she could not give up on Helen because, at her age and in consideration of
the pregnancy difficulties she experienced, the twins were her last opportunity to have children. All she ever
wanted was to become a mother.
Ethical decision-making is a complex topic that is beyond the scope of this article. However, the
fundamental principle -- that the focus remains on the infant -- is perhaps one of the most difficult aspects
of palliative care decisions. Infants cannot speak for themselves; so many assumptions must be made
regarding what is in their best interests.

The principal surrogate decision makers are the parents. The concept of family-centered care walks a thin
line in these circumstances, as we try to strike a balance between the needs of the infant and the needs of
the family. Carter[5] maintains that unless there is evidence that the parents are not acting in the best
interests of their child, their authority should not be usurped by medical professionals. In the scenario
illustrated above, the decision maker (Nicole) was unfortunately focusing mostly on her own need to
become a mother. Without overtly or covertly accusing Nicole of selfishness, the healthcare team must help
Nicole see that her foremost concern must be with Helen, not herself.

A Difficult Decision: Forgoing Nutrition and Hydration

Some decisions in the realm of end-of-life care are easier than others. It might be less difficult to forgo
surgery than to withdraw interventions already in place, such as ventilation, critical medications, or
artificially administered fluids and nutrition. In the case of critically ill infants, the latter generally means total
parenteral nutrition, although some infants with lethal anomalies are able to take milk or formula feedings.

When the burdens associated with artificial means to sustain life -- ventilators, resuscitation, and critical
care medications -- outweigh the benefits to the patient near the end of life, there is a general consensus
that withdrawing or withholding these interventions is morally permissible. In adults, this consensus extends
to the withholding of medically administered nutrition and hydration when it no longer benefits the patient.

In terminally ill infants, however, the idea of withholding or withdrawing nutrition or fluids can be more
difficult to accept because of the emotional power and symbolism attached to feeding as a basic, nurturing
element in the care of a newborn. Healthcare providers may be uncertain about the ethical and legal
ramifications of such a decision, and controversy regarding this issue persists.

It isn't always just the parents who can't accept the idea of withholding nutrition from a baby; many medical
and nursing professionals are also reluctant to withhold nutrition and fluids, even when the infant's death is
certain.[6] Adding to the emotional upheaval is the situation when fluids and nutrition are discontinued, but
death does not occur immediately. Caregivers and family members may start second-guessing the decision
to withdraw these interventions or perceive that any distress on the part of the infant is related to hunger or
thirst.[5]

A recent report from the Committee on Bioethics of the American Academy of Pediatrics [7] summarized the
medical, social, ethical, and legal issues involved in decisions to withhold or withdraw medically provided
nutrition and hydration from children who lack decision-making capacity. The bottom line is that medically
provided fluids and nutrition represent medical interventions similar to other types of support, and have the
same potential for adverse effects and discomfort. There is consensus that it is ethically permissible to
withdraw medically provided fluids and nutrition from infants in selected circumstances. Consideration of
burdens and benefits is the correct approach to determine the appropriateness of continuing to provide
nutrition and hydration.

When It's Time for Palliative Care

Finally, I asked Dr. Catlin for words of encouragement for nurses who feel that the time for palliative care
has been reached but don't know how to take that next step.
Helen's primary nurses began talking about palliative care for Helen among themselves. They were
distressed because Helen had lost both of her umbilical lines (from perfusion problems in her feet) as well
as her percutaneous intravenous central catheter (PICC). Attempts to replace the PICC and peripheral
arterial catheter were unsuccessful after several hours. Standard intravenous (IV) catheters were now
being used to administer fluids to Helen, but these lasted barely one shift; Helen now had to undergo
frequent IV restarts in addition to heel lances for all blood tests. All of these procedures not only were
painful but caused more instability in Helen's general condition. Helen was deteriorating.

Dr. Catlin believes that anyone -- either nurse or physician -- can, and should, say it's time to talk about
palliative care. If the hospital has palliative care services, this is the place to start. If these services are not
available, every NICU should have a palliative care protocol and staff who have received additional training
in palliative care.

Dr. Catlin offers these suggestions for opening discussions with parents about palliative care (a complete
list can be found in Dr. Catlin's publications.[1])

Suggest that parents bring a third-party support person and spiritual support, if desired;
Meet with parents in a private, comfortable room where all can be seated;
Offer to audio-record the conversation;
Assure parents that their infant will not be abandoned;
Use the baby's first name, and strive for lay language in conversations avoid terms like "withdrawal
of care" or "withdrawal of treatment" --treatment is being changed, not withdrawn; and
Don't present palliative care as a choice between aggressive curative efforts and comfort care;
instead, focus on establishing mutual goals to assure the baby's comfort, and what parents may
now be able to do (holding, cuddling, kangaroo care, breast-feeding, as appropriate).

At first, Nicole was resistant. She had spent 3 weeks in the hospital lying in bed planning her twins' lives.
She was not ready to accept the idea of not taking both of them home. At the same time, now that Nicole
herself was stronger, she had sat for many hours at Helen's bedside and could see for herself that Helen
was not improving. Nicole wanted some time to think about it, but she was beginning to realize that the fork
in the road had been reached.

Death seems so much worse for the young, who haven't yet lived.[3] It can be very difficult for parents, and
sometimes even caregivers, to recognize the fork in the road. If palliative care is begun at birth or when a
potentially life-limiting condition is recognized, it will be easier to make the transition to purely palliative care
when the appropriate time comes.

References

1. Catlin A, Carter B. Creation of a neonatal, end-of-life palliative care protocol. J Perinatol.

2002;22:184-195. Abstract
2. World Health Organization. WHO definition of palliative care. Available at:
http://www.who.int/cancer/palliative/definition/en/ Accessed October 27, 2009.
3. Baergen R. How hopeful is too hopeful? Responding to unreasonably optimistic parents. Pediatr
Nurs. 2006;32:484-486.
4. Orloff SF, Quance K, Perscyk S, Flowers WJ, Veale E Jr. Psychosocial and spiritual needs of the
patient and family. In: Carter BS, Leventown M, eds. Palliative Care for Infants, Children, and
Adolescents. Baltimore: Johns Hopkins University Press, 2004:147.
5. Carter BS, Leuthner SR. The ethics of withholding/withdrawing nutrition in the newborn. Semin
Perinatol. 2003;27:480-487. Abstract
6. Task Force on Ethics of the Society of Critical Care Medicine. Consensus report on the ethics of
foregoing life-sustaining treatments in the critically ill. Crit Care Med. 1990;18:1433-1439.
 7. Diekema DS, Botkin JR, The Committee on Bioethics. Clinical report-forgoing medically provided
nutrition and hydration in children. Pediatrics. 2009;124:813-822. Abstract

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