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

©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
C ARE UNIT: A NURSING
P ERSPECTIVE
By Debbie Stayer, RN-BC, PhD, CCRN, and Joan Such Lockhart, RN, PhD, CORLN,
AOCN, CNE
P ediatric Critical Care
350 AJCC AMERICAN JOURNAL OF CRITICAL CARE, July 2016, Volume 25, No. 4 www.ajcconline.org
by AACN on September 7, 2018http://ajcc.aacnjournals.org/Downloaded from

D espite 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
life 4 ; 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.
www.ajcconline.org AJCC AMERICAN JOURNAL OF CRITICAL CARE, July 2016, Volume 25, No. 4 351
by AACN on September 7, 2018http://ajcc.aacnjournals.org/Downloaded from

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 study
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’t
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 the
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
352 AJCC AMERICAN JOURNAL OF CRITICAL CARE, July 2016, Volume 25, No. 4 www.ajcconline.org
by AACN on September 7, 2018http://ajcc.aacnjournals.org/Downloaded from