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

This study surveyed pediatric nurses in a freestanding children’s hospital regarding their PEOLB beliefs and experiences in caring for dying children and their families. The study describes the PEOLB beliefs and practices of individual nurses, but also characterizes different groups of nurses based on the similarity of their views about palliative care. Additionally, the study examines unit-level variation in pediatric nurses’ degree of collaboration with a hospital-based palliative care team when caring for dying children and their families.

Pediatric Nurses’Individualand 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 th
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 palliativ
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 ofopportunity to debriefafter a patient’s
death, uncertainty about the goals of care, and the health care team’s reluctance to discuss hospice with famil
Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of th
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
collaborative practice with a palliative care team in ways thatshould 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 oflife; 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 differentgroups 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 potentialgroup-leveldifferences are important,
1University of Pennsylvania Schoolof Nursing,2 Pediatric Advanced Care Team,3Departmentof Nursing, Children’sHospital 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 practicalimplications regarding how interventions
intended to assist nurses in the provision of excellent PEOLB
care are designed and then implemented acrossdiverse
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-sectionalsurvey of allnurses at a
freestanding children’s hospitalduring the spring of2005.
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.9–18Upon close
review of severalquestionnaires9,12,14and other publica-
tions,10,11,13,15–18
we created an item poolof questions that
addressed nurses’ knowledge, attitudes, practices, and expe-
riences regarding various aspects of PEOLB care.After soli-
citing input from other members ofour multidisciplinary
palliative care team regarding the pertinence and importance
of this large setof questions,we culled the setdown 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 ofa web-based
questionnaire (Inquisite SurveyTM, 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/
spiritualbackground and values,and primary unitof em-
ployment.To understand theirPEOLB 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 generaldomains:1) physicalcare,2) psy-
chosocialcare 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 personaland/or
professional experiences with a hospice program.
Analysis
We generated descriptive summary statistics ofvarious
items related to nurses’PEOLB experiences.We employed
agglomerativehierarchicalcluster 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
involvementwithin units and constructed multivariate lo-
gistic regression models to test for the effects of nurse char-
acteristics (hours ofend-of-life education,years ofnursing
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-R2 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 ofnursing experience and 66% described them-
selves as having strong religious orspiritual 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 thatindividual
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 thatall the goals were important(25% ofall 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 oftreat-
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 involvementwith 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 palliativecare team involvement,although
nurses with 1 to 8 hours ofend-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

times more likely to reportbeing involved with the team
when caring for a dying child than those with no formal end-
of-life education ( p < 0.01).
Discussion
This study sought to describe pediatric nurses’ experiences
with PEOLB care,to examine naturalgroupings ofnurses
based on perceived goals and problems in providing PEOLB
care,and to assess patterns ofnurse collaboration with a
hospital-based palliative care service from an organizational
perspective. Using survey data from nurses in a freestanding
children’s hospital,we have shown that pediatric nurses re-
port a range of PEOLB education,exposure to hospice pro-
grams, and experience in caring for dying children. Further,
we have demonstrated that nurses perceive the goals of and
obstacles to PEOLB care differently, and moreover, that nur-
ses can be categorized into clusters based upon their views.
Lastly,we have identified the significant impact of the hos-
pital unit on nurses’involvementof the PPC team when
caring for dying children and their families,more so than
individual characteristics ofnurses thatare frequently tar-
geted as pathways for improving the delivery of PEOLB care.
This study, although limited with regard to assessing only a
single children’s hospital, nevertheless highlights two signif-
icantfindings regarding the organization,implementation,
and delivery of PPC services in the inpatient setting.First,
hospitals consistof clusters ofnurses who range from en-
thusiastic proponents for a broad array of palliative care goals
to those who have a much more restricted vision of what PPC
should attempt to accomplish.Although this finding is not
surprising, this study is the first to document the existence of
such attitudinalgroupings regarding palliative care percep-
tions within a hospitalsetting.We employed a technique
(hierarchical agglomerative cluster analysis) that sorted indi-
vidual nurses,on the basis of their response to all the ques-
tions regarding attitudesand beliefsabout the problems
PPC confronts and the goals it should pursue,into groups
The following units’ group means differed significantly (p < .05)
from the Oncology Unit, which was used as a reference group:
(1) Neonatal Intensive Care Unit, (2) Pediatric Intensive Care Unit,
(3) Emergency Department, (4) Cardiac Intensive Care Unit,
(5) Pulmonary Department.
FIG. 1. Nurses’ perceived goals and problems of PEOLB.
634 TUBBS-COOLEY ET AL.

composed of individuals who were the most similar to other
members in that group,and most dissimilar to members in
other groups. This is a technique used by marketing research
to identify and understand groups ofpeople with similar
preferences and values.By direct analogy,our findings re-
garding discrete groups of nurses,bound together by com-
mon but not universally shared attitudes, can be thought of as
an initial foray into the social marketing of PPC interventions
among hospital-based pediatric nurses.The practicalimpli-
cation ofidentifying these different‘‘marketsegments’’of
nurses (such as nurses who feel that every item is an impor-
tant goal, as in Goals Cluster 1 of Table 2, as compared with
nurses who feel that pain control is more important than de-
cisional support,as in Goals Cluster 5) is that hospital-wide
PPC interventions need to be tailored and ‘‘sold’’ to each of
these differentgroups,if the architects ofthe intervention
hope to have the members of the group willingly (or even
better,enthusiastically) adopt and support the intervention.
For instance, if the planned intervention is very comprehen-
sive, one market segment of nurses will see both the need for
such a wide-ranging service and approve of its expansive set
of goals,but other market segments of nurses will likely be
FIG. 2. Distribution of nurses’ involvement of the PPC team across hospital units.
Table 2. Cluster Analysis of Nurses’ Perceived PEOLB Goals and Problems
Group Count Adamancy Specific items
Endorsed Rejected
Goals 1 ‘‘Every item is an important goal.’’ 101 (25%) 4.0 All None
2 ‘‘Quality of life and pain control,
are important,but spirituality
and hospice are not important.’’
105 (26%) 3.7 Quality
of life,Pain
Spiritual,Hospice
3 ‘‘Pain is important,but other
symptoms are not.’’
74 (19%) 3.7 Pain Symptoms
4 ‘‘Pain control is more important
than hospice.’’
53 (13%) 3.4 Pain,Child
psychosocial
Hospice
5 ‘‘Pain control is more important
than decisional support.’’
67 (17%) 3.2 Pain Psychosocial,
Communication
Problems 1 ‘‘Every item is a significant problem.’’116 (30%) 3.2 All None
2 ‘‘Spirituality problems are more
than physical problems.’’
107 (28%) 2.3 Spirituality Pain,Symptoms
3 ‘‘Decisional problems and hospice
underuse are more important than
other psychosocial or
spiritual problems.’’
33 (9%) 2 Goals,
Communication,
Hospice
Psychosocial,
Bereavement,
Spiritual
4 ‘‘Decisional problems more important
than physical problems.’’
86 (22%) 1.5 culture,DNR Pain,Symptoms
5 ‘‘No item is a significant problem.’’ 47 (12%) 0.8 None All
DNR, do not resuscitate order.
NURSES’ ASSESSMENTS OF PALLIATIVE, END-OF-LIFE, AND BEREAVEMENT CARE 635

more skeptical, believing the a more narrowly focused inter-
vention is warranted and proper. The converse would also be
true:a more circumscribed intervention (say,emphasizing
improved pharmacologicalpain management) would have,
based on our market segmentation analysis,fans and foes.
Anticipating such reactions can both motivate and guide how
the champions for the planned intervention design the inter-
vention and its rollout, anticipating concerns and addressing
them prospectively.
A second and likely related finding is the contextualsig-
nificance of the hospital unit with respect to the PEOLB care
problems that nurses perceive and how nurses work with the
available palliative care resources. Our study is not the first to
note associations between perceptions of PEOLB barriers and
the hospital unit; Burns et al.19found significant differences in
reported barriers to PPC between intensive care unit staff and
staff working on general hospital units.One possible expla-
nation for these differences is variation in unit culture.Hos-
pital units can be characterized as having distinct cultures that
affect nurses’attitudes and actions as well as the success of
care delivery redesign within an organization.20,21Unit cul-
ture may also impact the level of acceptance a palliative care
service is able to garner among nurses, particularly if nurses
view the service as either encroaching on their role as the
primary PEOLB care provideror perceive the service as
adding to their workloads.Although this study did not ex-
amine unit-levelPEOLB culture, we suspectthat varying
PEOLB norms at the unit level may partially explain the
findings.
The results of the study also have practical implications for
the design and implementation of PPC services in the inpa-
tient setting.As stated above,the first set of findings about
clusters ofnursing views is similar to marketing research,
helping the planners of a PPC service to understand the ex-
pectations and possible reactions ofnurses whose practice
may be impacted by the development of the service. Elsayem
and colleagues22 describesignificantdifferencesamong
nurses regarding the acceptance of a newly established in-
patientpalliative care service ata comprehensive cancer
center, differences which ultimately resulted in a substantial
revision of the delivery modelfor PEOLB services.Admin-
istrators may find a preemptive analysis ofnurses’views
regarding PEOLB care useful before rolling out a new service
or model of care delivery in order to anticipate the reception
of such services as well as to facilitate their acceptance among
staff.
Our findings also suggest that incorporation of a systems-
level approach to both understanding the barriers to effective
PEOLB care delivery and crafting interventions may be more
fruitful than individual-level approaches alone. Common in-
dividual-level approaches include formal PEOLB education,
retreats,and team-building workshops. Although these
pathways may be valuable for building a clinician’s repertoire
of PEOLB care knowledge and skill set, they do not account
for the organizational context in which PEOLB care is deliv-
ered. A systems-levelapproach to PEOLB care,such as
identifying and addressing obstacles to the appropriate use of
palliative care resources,may complement or synergize in-
dividually focused interventions.
In the end, surveys of hospital staff can serve several pur-
poses,the first of which may be simply to create a sense of
organizational legitimacy throughout the staff for subsequent
palliative care endeavors. Beyond this tactical reason of con-
ducting a survey, for our hospital this survey had very prac-
tical implications,shaping our strategy for advancing our
palliative care team’s mission, recognizing that different units
within the hospital had different perspectives and degrees of
adamancy regarding pressing patient care problems and ap-
propriate palliative care goals, and making us more mindful
during educational outreach sessions that even within units
nurses differed regarding what they thought was important,
allowing us to better hone our message to different groups of
nurses, and hopefully to greater effect.
Acknowledgments
Dr. Feudtner was supported by grant number K08 HS00002
from the Agency for Healthcare Research and Quality.Dr.
Tubbs-Cooley was supported by funding from the National
Institute for Nursing Research,NIH-Advanced Training in
Nursing Outcomes Research (T32-NR-007104, Aiken, PI) and
the Center for Nursing Outcomes Research (P30-NR-005043,
Aiken, PI).
HLTC, GS, and CF conceived of, designed,and im-
plemented the study;HLTC, KH, JF, and CF performed the
data analysis; HLTC, KH, and CF drafted the manuscript; all
authors revised the manuscript for key intellectualcontent.
All authors read and approved the final manuscript.
Author Disclosure Statement
No competing financial interests exist.
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Address correspondence to:
Chris Feudtner,M.D., Ph.D.,M.P.H.
General Pediatrics
3535 Market,Room 1523
The Children’s Hospital of Philadelphia
34th and Civic Center Boulevard
Philadelphia,PA 19104
E-mail:[e-mail]
NURSES’ ASSESSMENTS OF PALLIATIVE, END-OF-LIFE, AND BEREAVEMENT CARE 637