Living with Dying in the Pediatric Intensive Care Unit: A Nursing Perspective

This article discusses the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and their families. The study highlights the challenges faced by nurses in providing palliative care and the emotional impact of caring for dying children. The article emphasizes the need for additional supportive resources for staff to process and cope with death and dying.

©2016 American Association of Critical-Care Nurses
doi: http://dx.doi.org/10.4037/ajcc2016251
Background Despite reported challenges encountered
by nurses who provide palliative care to children, few
researchers have examined this phenomenon from the
perspective of nurses who care for children with life-
threatening illnesses in pediatric intensive care units.
Objectives To describe and interpret the essence of the
experiences of nurses in pediatric intensive care units
who provide palliative care to children with life-threatening
illnesses and the children’s families.
Methods A hermeneutic phenomenological study was
conducted with 12 pediatric intensive care unit nurses
in the northeastern United States. Face-to-face interviews
and field notes were used to illuminate the experiences.
Results Five major themes were detected: journey to
death; a lifelong burden; and challenges delivering care,
maintaining self, and crossing boundaries. These themes
were illuminated by 12 subthemes: the emotional impact
of the dying child, the emotional impact of the child’s
death, concurrent grieving, creating a peaceful ending,
parental burden of care, maintaining hope for the family,
pain, unclear communication by physicians, need to
hear the voice of the child, remaining respectful of
parental wishes, collegial camaraderie and support,
and personal support.
Conclusion Providing palliative care to children with
life-threatening illnesses was complex for the nurses.
Findings revealed sometimes challenging intricacies
involved in caring for dying children and the children’s
families. However, the nurses voiced professional satis-
faction in providing palliative care and in support from
colleagues. Although the nurses reported collegial cama-
raderie, future research is needed to identify additional
supportive resources that may help staff process and
cope with death and dying. (American Journal of Critical
Care. 2016;25:350-356)
LIVING WITH DYING IN
THE PEDIATRIC INTENSIVE
CARE UNIT: A NURSING
PERSPECTIVE
By Debbie Stayer,RN-BC, PhD, CCRN,and Joan Such Lockhart,RN, PhD, CORLN,
AOCN, CNE
Pediatric Critical Care
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Despite advances in health care, thousands of children die annually from life-
threatening illnesses.1 Caring for critically ill children whose conditions progres-
sively worsen or who die quickly is often overwhelming for health care providers.
Nurses in the pediatric intensive care unit (PICU) face unique challenges in
providing care to such children and the children’s families.2
About the Authors
Debbie Stayer is an assistant professor, Department
of Nursing, Bloomsburg University of Pennsylvania,
Bloomsburg, Pennsylvania. Joan Such Lockhart is a
professor, Duquesne University School of Nursing,
Pittsburgh, Pennsylvania.
Corresponding author: Debbie Stayer, 7 Cotswold St,
Danville, PA 17821 (e-mail: [e-mail]).
PICU nurses often spend considerable time
attempting to identify and manage the palliative care
needs of children and the children’s families.3 Parents
and health care providers frequently want to continue
aggressive treatment to the absolute end of the child’s
life4; in the United States, 80% of children who die
in hospitals do so in PICUs.2,5
PICU nurses may be challenged when a child’s
focus of care shifts from cure to death.3 Also, many
nurses have received little formal education on palli-
ative care and may feel uncomfortable or unprepared
to care for children with life-threatening illnesses that
may result in death.6 Caring for critically ill children
on a regular basis in which life-prolonging treatments
are offered may elicit emotions of helplessness,
anger, and stress in nurses and impede the quality
care the nurses provide.1,7,8
Few publications describe the experience of pro-
viding palliative care to children with life-threatening
illnesses from the perspective of PICU nurses. Our aim
was to understand the perspectives of PICU nurses
who provide palliative care to these children and the
children’s families and to understand the contextual
factors associated with the nurses’ experience.
Methods
Design
Hermeneutic phenomenology, a descriptive and
interpretative method,9 allowed for understanding
how PICU nurses interpreted and made meaning of
their experiences in caring for children with life-
threatening illness and the children’s families.
Study Participants
A purposive sample of 9 female and 3 male
nurses from a nonfreestanding children’s hospital
in the northeastern United States participated in the
study. Nurses were included if they were a registered
nurse, had worked in the PICU for at least 18 months,
and were willing to describe their experiences and
provide informed consent. Permission to conduct
the study was obtained from the setting and univer-
sity where the researchers were affiliated. Participation
was voluntary, and participants could withdraw at
any time. Privacy was ensured by removing identifi-
ers in the interviews and using pseudonyms.
Data Collection
After interviews had been conducted with 10
participants, repetition of salient points was evident.
Two additional interviews revealed no new findings.
Saturation of data was achieved with 12 interviews.
Data collection involved a 9-item demographic
form, an audio-recorded interview, a follow-up
session to clarify responses, and field notes for
nonverbal observations. Inter-
views began with open-ended
questions: “What is it like to care
for children diagnosed with a
life-threatening illness and their
families? Tell me what this experi-
ence has meant for you?” Interview
probes encouraged and clarified
responses. Participants received $25 gift cards after
follow-up. All interviews were conducted by the
same person (D.S.)
Analysis
Data were analyzed by using the hermeneutic
phenomenological process described by Cohen et al9
and NVivo 9 (QSR International) computer software.
Interviews were transcribed verbatim, with accuracy
verified by the principal investigator (D.S.). Analysis
began with immersion into the data to identify
essential characteristics of the phenomenon (Table 1)
and gain an initial interpretation of the data. The
iterative process of the hermeneutic circle and reflec-
tive awareness (see Figure) were used and offered a
more in-depth analysis of the data by examining the
smaller parts within the context of the whole experi-
ence. Interpretations were continuously reviewed and
scrutinized within and between transcripts.
Trustworthiness
Member checking, reflective journaling, and
bracketing enhance credibility of a study’s findings.11
Peer debriefing was conducted by the second
Many nurses have
received little
formal education
on palliative care.
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investigator (J.S.L.), who is experienced in qualita-
tive research. Both investigators reviewed tran-
scripts independently to identify themes and
discussed their findings until consensus was
reached. An audit trail was created to address
study dependability and confirmability.12
Results
The mean age of participants was 35.4 (range,
23-49) years. Most (42%) reported having 5 or fewer
years of nursing experience, and slightly more than
half (58%) reported receiving no formal preparation
on death and dying (Table 2).
A total of 5 major themes with 12 subthemes
were identified (Table 3).
Journey to Death
In the theme “journey to death,“ nurses talked
about their role and responsibilities in providing
palliative care to children in the PICU during the
entire dying process. Caring for a dying child was
viewed as “part of my job” but was often emotion-
ally demanding.
The Emotional Impact of the Dying Child. The stud
participants described the emotional impact that
providing physical care to a dying child and psycho-
social care to the child’s family had on the nurses
while working in the PICU. Although most of the
nurses expressed feelings of sadness, frustration,
anger, and helplessness, others conveyed a more
positive experience.
Mixed emotions were evident in 2 nurses’ expe-
riences of the same night shift when they dealt with
2 critically ill children who experienced cardiac arrest
on the unit almost simultaneously. One nurse, upset
and frustrated, described the situation as follows:
We basically had 2 kids die in 1 shift,
that’s a lot when 1 child passes and you
move to the next child—their heart stops
and you haven’t had time to, to grasp
the death of the first child, you have to
move on to try and stop the second
child from dying. I didn’t have a chance
to say good-bye to the parents. I didn’t
feel closure with this family.
The other nurse stated in an angry voice, “There wasn
enough time to do the things we’d normally do for
families because the other child kept coding. I felt
as though I failed this family.”
On the other end of the spectrum, another nurse
expressed feeling content with his experience in car-
ing for a dying child and the child’s family. He
recalled the following:
I had a difficult conversation with a family
regarding the prognosis of their child.
Their child had suffered a traumatic
brain injury . . . wasn’t likely to recover.
The child did end up dying; the family
sent me a thank-you note later for being
kind and honest in explaining how dismal
the situation was.
The Emotional Impact of the Child’s Death. The
nurses expressed how overwhelming it was for them
to watch families see children die. Several nurses
shared their feelings about experiencing the time
of death: “It never gets easier,” and “It’s always gut
wrenching to see the families go through it.” Some
nurses voiced how difficult it was to watch children
as the children took the last few breaths and how the
situation considerably affected the nurses, knowing th
situation could be reversed at any time. Participants
stated, “I was overcome by my emotions,” “I had to
step out of the room to regain my composure,” and
“I cried with the family!”
Concurrent Grieving. The nurses tried to meet the
needs of patients’ families during this difficult time
by recognizing where the families were in the griev-
ing process. One of the nurses shared the following:
Figure Iterative process of the hermeneutic circle.
Reprinted from Bontekoe,10(p4) with permission.
Experience
Experience
Whole
Parts
Intergration
(Define) Contextualization
(Illuminate)
Table 1
Essential characteristics
Elephant in the room/communication
Nursing staff support and relationships developed between patients’
families and nursing staff
Pain/torture
Real hope vs false hope
Relating to situation on a personal level
Children’s dying is part of the job
The time after/the final visit
Where in the dying process is the child’s family
Interdisciplinary relationships
Lens of the nurse
Nurse-physician relationship
The children
Stress of job/support for nurses
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I need to be patient and recognize denial
is a powerful emotion! I found myself
on one kid . . . I realized I was getting
upset with the family for not being as
far along in the grieving process as I was.
I was to acceptance, this kid has been
through awfulness, and someone needs
to let him go. And they [the family] were
still back denying there was a problem.
Creating a Peaceful Ending. Many nurses remarked
how dealing with a child’s death was difficult for them.
They described their need to try and make some
“good” from a bad situation for the children’s fami-
lies, such as providing simple comfort measures for
the child. One nurse described her attempt to create
a peaceful ending stating, “It is important to me to
make that last time for the family as personal as
possible . . . the baby’s own clothes . . . a pretty
blanket . . . some lotion to smell good.”
Additionally, all the nurses said delivering
effective pain management at a child’s end of life
was particularly important to them. One nurse
remarked as follows:
When I give that morphine I want to
know this baby is going to lie there with
her eyes closed peacefully and just go to
sleep. I’ve never seen any child struggle . . .
never . . . and I don’t want to because
they shouldn’t!
A Lifelong Burden
The theme “a lifelong burden“ was discussed
by the nurses in relation to children who had expe-
rienced an acute injury and were left devastated or
children who had a progressive chronic illness that
required extensive lifelong care.
Parental Burden of Care. Parental burden of care
was viewed by many nurses as being emotionally and
physically exhausting for the children’s families, but
particularly for mothers, who were often the primary
caregivers of these children. One nurse commented:
“It was a downward spiral; no matter what we did
for her [the child], nothing seemed to help . . . you
almost had to turn your back. I felt terrible. Her
mother sat at the bedside by herself staring at her
daughter in [a] pentobarb [pentobarbital] coma.”
Challenges Delivering Care
For the theme “challenges delivering care,“ the
nurses described situations encountered with the
children, the children’s families, or physicians that
made it difficult to deliver nursing care.
Maintaining Hope for the Family. Many nurses
described feeling “guilty” taking away the last bit
of hope from children’s families. One nurse expressed
her guilt by saying, “There are times when there isn’t
Major themes and subthemes
Table 3
Meanings of the themes and subthemes
Journey to death
The emotional impact of the
dying child
The emotional impact of the
child’s death
Concurrent grieving
Peaceful ending
A lifelong burden
Parental burden of care
Challenges delivering care
Maintaining hope for the child’s
family
Pain
Unclear communication
Need to hear the voice of
the child
Remaining respectful of
parental wishes
Maintaining self
Collegial camaraderie and
support
Personal support
Crossing boundaries
Children’s dying is part of their job
Difficult watching patients’
families experience sadness
Making sense of a senseless
situation
Creating a “positive” for the
patient’s family
Not accepting reality of child’s
condition
Hope and disease progression
imbalance
No child should suffer
Family misunderstandings
Child should have a say in
decision-making
Being mindful when not in
agreement
Important to share feelings with
colleagues; rely on one’s family
during difficult times
Experienced good and bad, ups
and downs with patients’ families;
developed relationships with the
families
Essential meanings
Characteristic
Table 2
Demographic data for the 12 participants
Age, y
20-25
26-30
31-40
* 41 years
Race/ethnicity
White
Years of nursing experience
0-5
6-10
11-20
> 20
Years of practicing in the pediatric intensive care unit
0-5
6-10
11-20
> 20
Highest nursing degree
Associate
Baccalaureate
Formal education on death and dying
Yes
No
2 (17)
3 (25)
2 (17)
5 (42)
12 (100)
5 (42)
3 (25)
2 (17)
2 (17)
6 (50)
3 (25)
1 (8)
2 (17)
6 (50)
6 (50)
5 (42)
7 (58)
No. (%)a
a Because of rounding, not all percentages total 100.
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Discussing feelings
with colleagues gave
nurses a sense of
purpose, closure, and
a way to decompress.
hope for survival, so now it’s time to hope for a good
death.” Another nurse who had been caring for an
adolescent with a traumatic brain injury remembered
the difficulty she felt not being completely honest
when asked by the parents what she would do if
she were in their situation. She did not want to
take away their hope, but wanted to be “realistic
and honest” with them.
Unnecessary Pain. Many of the nurses said they
did not like providing care when it caused the chil-
dren more pain. One nurse shared her challenge:
Providing care was painful to him
[child]. He would grimace and cry and
we [nurses and physicians] continued to
care for him because the other option
was to let him go . . . but his parents
weren’t willing to give up. I felt as
though I was constantly “torturing” him!
Unclear Communication by Physicians. Many of
the nurses referred to the “elephant in the room”
in which the physicians talked about everything
except what really should be talked about: the child’s
failing condition and prognosis. One nurse, very
angered by such communications remarked, “I was
really disheartened in the palliative care meeting.
Everyone [the physicians] beat
around the bush.”
Need to Hear the Voice of
the Child. The nurses thought
that when appropriate the
child’s voice “should be heard”
and the child’s decisions for
care respected. Often, the nurses
thought the children were
more aware of the failing situa-
tion than the parents expressed. One nurse com-
mented on how children were often ahead of the
parents in better understanding the seriousness of
the situation:
I think kids who know they are dying
have one of the best perspectives on life.
Not only theirs but everyone else’s. I truly
think they have it figured out. They really
see the big picture. They know who is
going to handle it . . . they know who’s
not. They have already accepted what is
happening, when no one else has. They
tell it like it is!
Remaining Respectful of Parental Wishes. Trying
to remain respectful of parents’ wishes for their
children became trying for the nurses. The participants
thought that no one is typically prepared for a death,
let alone parents facing their child’s death. The nurses
who were also parents themselves claimed although
they would not “give up on their child”; they did
acknowledge there were times when “the end” had
been reached and unpleasant decisions needed to be
made. One of the nurses noted, “I feel like I am in
the middle of these situations as I see both perspec-
tives, but I advocate for the welfare of the child.”
Maintaining Self
The focus of the theme “maintaining self“ was the
nurses’ validation of their feelings about the unpleas-
ant happenings in the unit. Discussing their feelings
with colleagues gave them a sense of purpose, clo-
sure, an opportunity to decompress, and the ability
to safeguard themselves in order to continue work-
ing in the unit.
Collegial Camaraderie and Support, Personal
Support. Most of the nurses talked about how
“being supportive during times of crisis,” and
“knowing others had experienced the same thing,”
helped them continue working in the unit. They
also spoke of trying not to “take work home,” but
noted that taking work home happened many times.
One nurse exclaimed, “It goes back to my awe-
some coworkers, because the second you leave that
room [child’s room] they’re [the nurses] trying to
cheer you up some way.” Personal support was also
important to the nurses. Another nurse said, “I try
not to take it home, but I do! There are many times I
talk to my husband about a horrible case.”
Crossing Boundaries
The final theme, “crossing boundaries,“ reflected
the nurses’ experiences in developing relationships
with children’s families and showing families that
they respected their child as a person. Many nurses
admitted they had often “crossed the line” by allow-
ing themselves to become “friends” with many of
the children and the children’s families. One of the
nurses described such a relationship:
I was attached to the child and his mom.
She [his mom] was there with him; she
stayed with him especially as he got closer
to death. It amazed me that his mom
was saying to me, “thank you” after he
passed. I never get that! I never under-
stand how a family can thank you after
their child has passed away.
Discussion
In this study, we collected the day-to-day
accounts of PICU nurses who provided palliative
care to children with life-threatening illnesses and
the children’s families. The nurses viewed their
ability to provide comfort and support to the fam-
ilies during the dying process as a significant experi-
ence. Being dedicated to the context of the child and
family’s situation was essential for these nurses and
afforded them opportunities to be hopeful, be honest
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Respecting parent’s
wishes to continue
aggressive treatment
often challenged
nurses’ personal values
appreciate what was happening, and assess how they
could best provide families with a peaceful ending.
This finding was consistent with the results of earlier
research,13 which cited the importance for a child’s
parents to receive support from health care providers
and have adequate time with the child after death.
Remaining respectful of parental wishes to con-
tinue aggressive treatment for the parents’ children
was often difficult and challenged the nurses’ personal
values. However, as a child’s death approached, the
nurses, not wanting to take away the last bit of hope,
attempted to discuss and set realistic goals with the
child’s parents for the child’s care.
Many of the nurses addressed the emotional
exhaustion experienced by families of children dev-
astated by an acute injury or children with a pro-
gressive chronic illness. The nurses sensed that many
of the parents had not been able to reach acceptance
concerning the “loss” of their child. Parents had learned
to cope and provide a sense of normalcy for their
family the best way possible. The nurses thought
it “wasn’t their place” to initiate a discussion with
the families about the option of stopping treatment.
This finding is consistent with the results of a study14
in which participants viewed families’ caring for
children with palliative care needs as a major under-
taking. In addition, Harrison et al15 reported that
long-term adverse effects when families could not
cope with the loss of the families’ once-normal
children often led to destruction of the family. The
nurses, who were also parents, stated they them-
selves would not give up on their own child until
the very end. The nurses struggled when these situa-
tions arose, because the situations created a personal
and professional dilemma for them.
The importance of maintaining open and honest
communication with the child and the child’s family
and physicians could not be overstated by the nurses.
This finding was consistent with previous indications15
that communication was an essential element of
quality palliative care. The nurses also thought that
including the child in treatment decisions was essen-
tial. Finally, the nurses adamantly noted that informed
decision making would be compromised unless
physicians consistently promoted understanding by
the child and the child’s family by communicating
at an appropriate level.
The emotional impact of a child’s dying and
death markedly affected nurses and often triggered a
grief response in them that became more pronounced
if they shared a close relationship with the child and
the child’s family or if the dying child had character-
istics similar to the characteristics of the nurses’ own
children. Such findings were consistent with earlier
research7,8,14,16-19
indicating that feelings of sadness
and grief were compounded in nurses when a dying
child was similar to their own child.
Health care providers are not typically recognized
as grievers, even though grief reactions can occur in
anyone who has experienced loss. Therefore, recog-
nizing that nurses can also be grieving when a patient
dies is important.20
Research on the importance of collegial camara-
derie as a source of support and coping strategy for
PICU nurses is limited17,21despite the friendship, trust,
and validation of feelings provided. Being able to
share personal thoughts that arose while providing
palliative care for these children was crucial for the
nurses. Colleagues who had similar experiences
understood what the nurses were encountering and
allowed them to confirm
feelings, make meaning of
the situation, and continue
working in the PICU.
The death of a child
can be stressful for health
care professionals. Profes-
sionals routinely exposed
to the death of children
may experience sadness,
anger, guilt, chronic stress, and a feeling of isola-
tion.22,23 Yet, many participants expressed profes-
sional satisfaction in caring for dying children,
because the situation afforded the nurses an oppor-
tunity to provide compassionate care to the children
and the children’s families during this critical time.
Our study was limited by its predominantly
white sample from a rural location. Perspectives of
PICU nurses from other racial or ethnic backgrounds
and from urban settings may offer different experi-
ences. Nurses who chose not to participate in this
study may also have had different perspectives.
Conclusion and Implications
Providing palliative care to children with life-
threatening illnesses is complex. PICU nurses are
in a key position to advocate for and deliver quality
palliative care. Our findings suggest the need for
future research focused on strategies to support
nurses’ personal grieving and coping abilities and
decrease perceived work-related stress.23,24 Under-
standing the perspective of the families of dying
children may provide valuable insight for an inter-
disciplinary approach to end-of-life care.
ACKNOWLEDGMENTS
We thank Dr Betty Ferrell, director and professor,
Nursing Research and Education, City of Hope, Duarte,
California, and Dr Rick Zoucha, professor, Duquesne
University School of Nursing, who provided insight and
expertise that greatly assisted this research.
FINANCIAL DISCLOSURES
None reported.
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eLetters
Now that you’ve read the article, create or contribute to an
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SEE ALSO
For more about the dealing with pediatric deaths, visit
the Critical Care Nurse website, www.ccnnonline.org,
and read the article by Mullen et al, “Caring for Pediat-
ric Patients’ Families at the Child’s End of Life” (Decem-
ber 2015).
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Living with Dying in the Pediatric Intensive Care Unit: A Nursing Perspective
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