Pediatric Nurses’ Individual and Group Assessments of Palliative, End-of-Life, and Bereavement Care

Pediatric Nurses’ Individual and Group Assessments
of Palliative, End-of-Life, and Bereavement Care
Heather L. Tubbs-Cooley, Ph.D., R.N.,1 Gina Santucci, M.S.N., APRN.BC,2,3 Tammy I. Kang, M.D.,2
James A. Feinstein, M.D.,2 Kari R. Hexem, M.P.H.,2 and Chris Feudtner, M.D., Ph.D., M.P.H.2
Abstract
Background: Although pediatric nurses working in children’s hospitals often provide care to dying children,
little is known about their palliative care beliefs and experiences as individuals or members of groups within the
hospital.
Objective: To describe pediatric nurses’ ratings of palliative care goals and problems, as individuals and
members of clusters of nurses with similar views, and nurses’ degree of collaboration with an inpatient palliative
care team across hospital units.
Method: A cross-sectional survey of nurses at a freestanding children’s hospital in 2005.
Results: Nurses rated the most important goals as managing pain, maintaining the child’s quality of life, and
improving communication. Commonly cited problems were lack of opportunity to debrief after a patient’s
death, uncertainty about the goals of care, and the health care team’s reluctance to discuss hospice with family.
Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the
adamancy of their views and the scope of the goals and problems they considered important or significant. The
hospital unit was the most important factor in predicting nurses’ degree of collaboration with the palliative care
team even after accounting for individual characteristics.
Conclusions: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of
problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of
collaborative practice with a palliative care team in ways that should be accounted for when planning and
implementing palliative care programs.
Introduction
Pediatric nurses play a crucial role in the provision of
palliative, end-of-life, and bereavement (PEOLB) care to
dying children and their families. Although pediatric nurses’
experiences with PEOLB care have not been well-described, a
substantial body of literature details the PEOLB experiences
of nurses caring for adult populations in areas such as on-
cology and intensive care units. 1–4 Nurses working in these
areas identify the goals of PEOLB care to include good pain
management, reducing patient suffering, facilitating a digni-
fied death, and effective communication between the health
care team, the patient, and the family.5–8 Additionally, they
report obstacles to the PEOLB care they provide including
lack of communication among physicians, nurses, and fami-
lies; lack of a defined treatment plan; discomfort with death
and dying; unnecessary prolongation of life; and lack of
awareness of end-of-life practices and resources. 6–8
In spite of the advancements in understanding the beliefs
and experiences of nurses providing adult PEOLB care, we are
unaware of equivalent studies that focus specifically on pe-
diatric nurse perspectives of PEOLB care. We therefore sur-
veyed pediatric nurses in a freestanding children’s hospital
regarding their PEOLB beliefs and experiences in caring for
dying children and their families. We sought to describe the
PEOLB beliefs and practices of individual nurses, but also to
better characterize different groups of nurses based on the
similarity of their views about palliative care. Additionally,
we examined unit-level variation in pediatric nurses’ degree
of collaboration with a hospital-based palliative care team
when caring for dying children and their families. This aim
was motivated by the clinical observation that nurses on dif-
ferent units utilize available palliative care resources differ-
ently; although (to our knowledge) this observation has not
yet been empirically documented in the literature. We believe
that these potential group-level differences are important,
1
University of Pennsylvania School of Nursing,2 Pediatric Advanced Care Team, 3 Department of Nursing, Children’s Hospital of
Philadelphia, Philadelphia, Pennsylvania.
Accepted January 7, 2011.
JOURNAL OF PALLIATIVE MEDICINE
Volume 14, Number 5, 2011
ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2010.0409
631

having practical implications regarding how interventions
intended to assist nurses in the provision of excellent PEOLB
care are designed and then implemented across diverse
groups of nurses (characterized by their attitudes and beliefs)
and distinct clinical units.
Methods
The Committees for the Protection of Human Subjects ap-
proved the conduct of this study.
Study design, participants, and setting
We conducted a cross-sectional survey of all nurses at a
freestanding children’s hospital during the spring of 2005.
During the year preceding the survey, the neonatal intensive
care unit (NICU) had 50 beds and the pediatric intensive care
unit (PICU) had 45 beds.
Survey development
We first canvassed the published literature on ‘‘nursing’’
and ‘‘palliative’’ or ‘‘end-of-life care,’’ specifically identifying
studies of nurses that had used questionnaires. 9–18 Upon close
review of several questionnaires 9,12,14 and other publica-
tions, 10,11,13,15–18 we created an item pool of questions that
addressed nurses’ knowledge, attitudes, practices, and expe-
riences regarding various aspects of PEOLB care. After soli-
citing input from other members of our multidisciplinary
palliative care team regarding the pertinence and importance
of this large set of questions, we culled the set down to a
provisional set of survey questions. We then pilot tested with
10 nurses of various backgrounds and clinical experience to
assess the clarity of the questions, making minor modifica-
tions in response to feedback. The complete survey ques-
tionnaire is available from the corresponding author upon
request via e-mail.
Study implementation
We administered the survey by means of a web-based
questionnaire (Inquisite Survey TM , Inquisite Inc., Austin, TX).
All nurses received an initial solicitation to participate in the
study via e-mail; the solicitation included a URL link to the
web-based questionnaire. Three follow-up solicitations and
reminders followed via e-mail. Nurses were also informed
about the survey at staff meetings throughout the hospital. In
the conduct of the study, no data were collected or generated
that could link a particular nurse to his or her response, or that
could distinguish respondents from nonrespondents.
Variables
We asked nurses to provide basic demographic informa-
tion including age, sex, years in nursing practice, religious/
spiritual background and values, and primary unit of em-
ployment. To understand their PEOLB beliefs, we asked
nurses to rate their agreement with a series of statements re-
garding their perceived goals of and obstacles to PEOLB care
using a Likert-type scale ranging from 0 (strongly disagree/
extremely unimportant) to 4 (strongly agree/extremely im-
portant) on four general domains: 1) physical care, 2) psy-
chosocial care and decision making, 3) care addressing
specific palliative care tasks, and 4) care sensitive to cultural,
spiritual, and ethical considerations. To discern differences in
the extent of nurses’ collaboration with the pediatric palliative
care (PPC) team across units, we asked respondents to gauge
the percentage of time they involved the team when caring for
a dying child (0%, 25%, 50%, 75%, 100%). At the time of the
survey nurses were not able to initiate a consult to the PPC
team independently, but were able to work collaboratively
with the team once a consult had been established. We also
asked nurses to enumerate the number of patients cared for in
the past year that had died as well as the total number of hours
of PEOLB education they had attained over their career. Fi-
nally, we queried nurses regarding their personal and/or
professional experiences with a hospice program.
Analysis
We generated descriptive summary statistics of various
items related to nurses’ PEOLB experiences. We employed
agglomerative hierarchical cluster analysis using Ward’s
linkage to examine the natural grouping patterns of nurses’
perceptions of a) the goals of PEOLB care and b) problems
encountered in PEOLB care. To study PEOLB practices reli-
ably at the unit-level, we limited analysis to units with 10 or
more nurse respondents, resulting in 272 nurses in seven
units. We used analysis of variance techniques to obtain an
estimate of the intra-class correlation of palliative care team
involvement within units and constructed multivariate lo-
gistic regression models to test for the effects of nurse char-
acteristics (hours of end-of-life education, years of nursing
experience, and number of patients cared for in the previous
year that died) and hospital unit on the likelihood of having
ever involved the palliative care team when caring for a dying
child. Robust variance estimators were used to account for the
interdependence of nurses within units and the final model
demonstrated a pseudo-R 2 value of 0.40, a C-statistic of 0.90,
and a Hosmer-Lemeshow test statistic indicative of satisfac-
tory goodness-of-fit ( p ¼ 0.73). The level of statistical signifi-
cance was set a priori as p < 0.05. All analyses were conducted
using Stata statistical software version 11.0 (StataCorp., Col-
lege Station, TX).
Results
Pediatric nurse characteristics
and PEOLB experiences
Of the 410 nurses who completed the survey (44% response
from the 932 eligible nurses), respondents were mostly female
(90.6%), normally distributed across age categories, and re-
presented 11 units including 3 intensive care units (neonatal,
cardiac, and pediatric) and 1 emergency department (ED).
Nurses reported an average of 12.1 (standard deviation [SD]
8.9) years of nursing experience and 66% described them-
selves as having strong religious or spiritual convictions.
Table 1 highlights the respondents’ PEOLB education and
experiences. Fifty-five percent reported between 1 and 8 total
hours of end-of-life education obtained during their nursing
career, whereas 23% of nurses reported no formal end-of-life
education. A majority of nurses (59%) had cared for 1 to 5
patients who died in the past year, with nurses in intensive
care units caring for dying patients more frequently. The small
percentage of nurses who reported caring for 11 or more dy-
ing patients in the past year were largely from the oncology
632 TUBBS-COOLEY ET AL.

and ED units, and the 15% of nurses who reported caring for
no dying patients were mostly from the rehabilitation and
‘‘other’’ units. Approximately half of the respondents had no
personal experience with a hospice program, and 56.6% had
no professional experience with a hospice program.
When asked whether they ‘‘had enough experience in car-
ing for dying children to do the job well,’’ 46.8% agreed, and
42.5% considered themselves to be ‘‘well-trained to take care
of dying children and their families, 36.4% agreed that they
found ‘‘it difficult to talk about death and dying with children
and their families, and 53.2% considered themselves to be
‘‘comfortable working with dying children and their families.’’
Nurse perspectives regarding goals and problems
At the individual level, nurses broadly endorsed all of the
goals of palliative care (Fig. 1), and identified as leading
problems confronting optimal palliative care the lack of op-
portunity to debrief after a patient’s death, uncertainty about
the goals of care, and the team’s reluctance to discuss hospice
with the family. Cluster analysis revealed that individual
nurses fit into 5 groups regarding their views of the impor-
tance of goals, and 5 similar groups regarding problems
(Table 2). For both goals and problems, large clusters of nurses
reported that all the goals were important (25% of all re-
spondents) and all the problems were significant (30%). For
the remaining clusters regarding goals, they each endorsed
pain control while rejecting one particular type of goal: spir-
itual care and hospice (26%), symptom management (19%),
hospice (13%), or psychosocial and communication support
(17%). For the problems, 3 groups differed regarding what
they perceived as the most significant problems (unaddressed
spirituality concerns, 28%; inadequate clarification of treat-
ment goals, poor communication, and nondiscussion of hos-
pice, 9%; and a cultural bias against PPC and underuse of do
not resuscitate orders, 22%), and a final group viewed no
specific problem as especially significant (12%). Interestingly,
specific units within the hospital were not associated with the
clusters of nurse views regarding goals ( p ¼ 0.46) but were
associated with clusters regarding problems ( p ¼ 0.03), sug-
gesting that goals are perhaps more universally held, whereas
problems are more unit specific.
Unit-level differences in nurses’ involvement
with the PPC team
Fig. 2 shows the distribution of the overall percentage of
time nurses within units reportedly were involved with the
PPC team when caring for a dying child as well as the pro-
portion of nurses that reported ever being involved with the
team. Across all units, nurses reported being involved with
the PPC team 38% of the time. Nurses working on floor units
were involved with the team more frequently than those in
ICUs, with minimal variation in involvement among nurses in
the floor units and substantial variation among those working
in the ICUs and ED. Among nurses in the NICU, only 27%
reported ever being involved with the PPC team when caring
for a dying infant. Overall, nurses within units were more
similar in their level of involvement with the PPC team
compared with nurses across units (intra-class correlation
0.47).
Compared with nurses in the oncology unit, nurses in all
other units were less likely to be involved with the PPC team.
In particular, nurses in the ED, NICU, and cardiac intensive
care unit (CICU) were significantly less likely to be involved
with the PPC team when caring for a dying child (Table 3).
Years of nursing experience and the number of dying children
cared for in the prior year did not significantly influence the
likelihood of palliative care team involvement, although
nurses with 1 to 8 hours of end-of-life education were 3.9
Table 1. Nurses’ Education and Experience with Pediatric PEOLB Care
N %
How much education have you had in end-of-life care? None 96 23.4
1–4 hours 159 38.8
4–8 hours 65 15.9
9–12 hours 35 8.5
>13 hours 55 13.4
Not answered 0 0.00
In the past year, how many patients have you cared for who have died? None 60 14.6
1 45 11.0
2 69 16.8
3–5 127 31.0
6–10 70 17.1
>11 36 8.8
Not answered 3 0.7
How much personal experience have you had with a hospice program? None 195 47.6
1–2 experiences 165 40.2
3–5 experiences 29 7.1
>6 experiences 21 5.1
Not answered 0 0.00
How much professional experience have you had with a hospice program? None 232 56.6
1–2 experiences 81 19.8
3–5 experiences 46 11.2
>6 experiences 49 12.0
Not answered 2 0.5
NURSES’ ASSESSMENTS OF PALLIATIVE, END-OF-LIFE, AND BEREAVEMENT CARE 633