November-December 2013 • Vol. 22/No. 6 359 Beverly Waller Dabney, PhD, RN, is Associate Professor, Southwestern Adventist University, Keene, TX. Huey-Ming Tzeng, PhD, RN, FAAN, is Professor of Nursing and Associate Dean for Academic Programs, College of Nursing, Washington State University, Spokane, WA. Service Quality and Patient-Centered Care L eaders of the U.S. Depart - ment of Health & Human Services (2011) urge providers to improve the overall quality of health care by making it more patient centered. Patient-centered care (or person-centered care) refers to the therapeutic relationship between health care providers and recipients of health care services, with emphasis on meeting the needs of individual patients. Al - though the term has been used widely in recent years, it remains a poorly defined and conceptualized phenomenon (Hobbs, 2009). Patient-centered care is believed to be holistic nursing care. It pro- vides a mechanism for nurses to engage patients as active partici- pants in every aspect of their health (Scott, 2010). Patient shadowing and care flow mapping were used to create a sense of empathy and urgency among clinicians by clarify- ing the patient and family experi- ence. These two approaches, which were meant to promote patient-cen- tered care, can improve patient sat- isfaction scores without increasing costs (DiGioia, Lorenz, Greenhouse, Bertoty, & Rocks, 2010). A better under standing of attributes of patient-centered care and areas for improvement is needed in order to develop nursing policies that in - crease the use of this model in health care settings. The purpose of this discussion is to clarify the concept of patient-cen- tered care for consistency with the common understanding about pa - tient satisfaction and the quality of care delivered from nurses to patients. Attributes from a customer service model, the Gap Model of Service Quality, are used in a focus on the perspective of the patient as the driver and evaluator of service quality. Relevant literature and the Gap Model of Service Quality (Parasuraman, Zeithaml, & Leonard, 1985) are reviewed. Four gaps in patient-centered care are identified, with discussion of nursing implica- tions. Background and Brief Literature Review Patient-Centered Care The Institute of Medicine (IOM, 2001a) and Epstein and Street (2011) identified patient-centeredness as one of the areas for improvement in health care quality. The IOM (2001b) defined patient-centeredness as …health care that establishes a partnership among practition- ers, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the edu- cation and support they require to make decisions and partici- pate in their own care… (p. 7) Charmel and Frampton (2008) defined patient-centered care as …a healthcare setting in which patients are encouraged to be actively involved in their care, with a physical environment t.

1. November-December 2013 • Vol. 22/No. 6 359
Beverly Waller Dabney, PhD, RN, is Associate Professor,
Southwestern Adventist University,
Keene, TX.
Huey-Ming Tzeng, PhD, RN, FAAN, is Professor of Nursing
and Associate Dean for Academic
Programs, College of Nursing, Washington State University,
Spokane, WA.
Service Quality and Patient-Centered
Care
L
eaders of the U.S. Depart -
ment of Health & Human
Services (2011) urge providers
to improve the overall quality of
health care by making it more
patient centered. Patient-centered
care (or person-centered care) refers
to the therapeutic relationship
between health care providers and
recipients of health care services,
with emphasis on meeting the
needs of individual patients. Al -
though the term has been used
widely in recent years, it remains a
poorly defined and conceptualized
phenomenon (Hobbs, 2009).

2. Patient-centered care is believed
to be holistic nursing care. It pro-
vides a mechanism for nurses to
engage patients as active partici-
pants in every aspect of their health
(Scott, 2010). Patient shadowing
and care flow mapping were used to
create a sense of empathy and
urgency among clinicians by clarify-
ing the patient and family experi-
ence. These two approaches, which
were meant to promote patient-cen-
tered care, can improve patient sat-
isfaction scores without increasing
costs (DiGioia, Lorenz, Greenhouse,
Bertoty, & Rocks, 2010). A better
under standing of attributes of
patient-centered care and areas for
improvement is needed in order to
develop nursing policies that in -
crease the use of this model in health
care settings.
The purpose of this discussion is
to clarify the concept of patient-cen-
tered care for consistency with the
common understanding about pa -
tient satisfaction and the quality of
care delivered from nurses to
patients. Attributes from a customer
service model, the Gap Model of
Service Quality, are used in a focus
on the perspective of the patient as
the driver and evaluator of service

3. quality. Relevant literature and the
Gap Model of Service Quality
(Parasuraman, Zeithaml, & Leonard,
1985) are reviewed. Four gaps in
patient-centered care are identified,
with discussion of nursing implica-
tions.
Background and Brief
Literature Review
Patient-Centered Care
The Institute of Medicine (IOM,
2001a) and Epstein and Street (2011)
identified patient-centeredness as
one of the areas for improvement in
health care quality. The IOM (2001b)
defined patient-centeredness as
…health care that establishes a
partnership among practition-
ers, patients, and their families
(when appropriate) to ensure
that decisions respect patients’
wants, needs, and preferences
and that patients have the edu-
cation and support they require
to make decisions and partici-
pate in their own care… (p. 7)
Charmel and Frampton (2008)
defined patient-centered care as
…a healthcare setting in which
patients are encouraged to be

4. actively involved in their care,
with a physical environment
that promotes patient comfort
and staff who are dedicated to
meeting the physical, emotion-
al, and spiritual needs of
patients… (p. 80)
In a concept analysis of person-
centered care, Morgan and Yoder
(2011) defined it as
…a holistic (bio-psychosocial-
spiritual) approach to delivering
care that is respectful and indi-
vidualized, allowing negotiation
of care, and offering choice
through a therapeutic relation-
ship where persons are empow-
ered to be involved in health
decisions at whatever level is
desired by that individual who is
receiving the care. (p. 3)
Of significance in various defini-
tions of patient-centered care is the
focus on the patient’s needs, patient
control, and the interaction between
the patient and health care provider.
Being patient-centered suggests
health care providers adapt their
Beverly Waller Dabney
Huey-Ming Tzeng
The Gap Model of Service Quality is used to clarify the concept

5. of
patient-centered care. Four possible patient-centered care
service qual-
ity gaps were identified. Nurse administrators may use these
gaps to
identify and develop appropriate outcome measures.
Instructions for Continuing Nursing Education Contact Hours
appear on page 363.
November-December 2013 • Vol. 22/No. 6360
services to reflect the goals, needs,
and values of the individual patient.
The Joint Commission (2010)
expected hospital leaders to develop
standards to advance effective com-
munication, cultural competence,
and patient- and family-centered
care. Gerteis, Edgman-Levitan, Daley,
and Delbanco (1993) identified
seven dimensions of patient-cen-
tered care needed to improve health
care quality: (a) respect for patients’
values, preferences, and expecta-
tions; (b) coordination and integra-
tion of care; (c) information, com-
munication, and education; (d)
physical comfort; (e) emotional sup-
port and alleviation of fear and anx-
iety; (f) involvement of family and
friends; and (g) transition and conti-
nuity. Communication with pa -

6. tients, which is essential to the appli-
cation of patient-centered care, facil-
itates patient involvement in the
planning of treatment (Hunt, 2009).
Patient-centered care can influ-
ence patient satisfaction, the quality
of health care, and possibly a patient’s
desire to return to a health care
provider for future services (Andrews,
2009; Charmel & Frampton, 2008).
Patients are ex pected to accept more
financial responsibility for their
health care, and they expect value in
their health care purchases as they
would with any other major pur-
chase (Charmel & Frampton, 2008).
McCormack, Manley, and Walsh
(2008) emphasized the significant
role played by health care policy in
developing systems and processes in
health care institutions that are per-
son-centered. The recommendations
of the IOM (2001b) and the Agency
for Healthcare Research and Quality
(2009) to adopt a philosophy of
patient-centeredness have encour-
aged many institutions across the
United States to implement patient-
centered models. A comprehensive
report on patient-centered care was
developed by the Institute for
Family-Centered Care and the
Institute for Health Care Im prove -
ment, from which four key concepts
emerged: (a) respect and dignity, (b)

7. information sharing, (c) participa-
tion, and (d) collaboration (Johnson
et al., 2008). Charmel and Frampton
(2008) indicated the attributes of
patient-centered care need to be clar-
ified to facilitate understanding of
their inter-relatedness. As part of the
promotion of patient-centeredness
for quality improvement, clarifica-
tion of the concept of patient-cen-
tered care is needed (McCormack et
al., 2008).
Communication
The interaction between nurses
and patients is central for the effec-
tive application of patient-centered
care (Hobbs, 2009). Levinson, Lesser,
and Epstein (2010) noted communi-
cation is fundamental to the delivery
of patient-centered care. Nurse-
patient communication seeks to
increase the nurse’s understanding
of the patient’s needs, perspectives,
and values. Nurse-patient communi-
cation also provides patients with
information needed to participate in
their care and assists in correcting
unrealistic expectations. Patient-cen-
tered communication is not simply
agreeing to provide information per
patients’ requests, nor is it throwing
information at patients and leaving
them to sort it out (Epstein, Fiscella,

8. Lesser, & Stange, 2010). Skillful com-
munication with patients helps to
build trust and understanding, and
may require the clinician to engage
in further questioning to explore
fully what the patient hopes to
achieve.
The Joint Commission (2010)
emphasized identification of patient
communication needs as an issue to
be addressed by health care leaders.
Patient communication needs may
include not only language or hearing
barriers, but also emotional or fatigue
barriers. In a qualitative study of
patients with cancer, Montgomery
and Little (2011) found some
patients may be unable or even
unwilling to express their preferences
in regard to treatment during the
debilitating stages of health. They
suggested patients be assessed indi-
vidually for their ability to engage in
such communication; some individ-
uals may need the health profession-
al to assume a greater facilitative role.
The quality of relationships and
interactions between patients and
nurses is of great importance to the
achievement of patient-centered
care. In addition to adequate infor-
mation sharing, structures and
processes are needed to enhance the
delivery of patient-centered care.

9. Delivery of Patient-Centered
Care
Luxford, Safran, and Delbanco
(2011) interviewed senior staff and
patient representatives in a qualita-
tive study. Several organizational
attributes and processes that facili-
tate patient-centered care emerged,
including the following: (a) strong,
committed senior leaders; (b) clear
communication of strategic vision;
(c) active engagement of patients
and families; (d) sustained focus on
staff satisfaction; (e) active measure-
ment and feedback reporting of
patient experiences; (f) adequate
resourcing of care delivery redesign;
(g) staff capacity building; (h)
accountability and incentives; and
(i) a culture supportive of change
and learning. Barriers included the
need to change the organizational
culture from a provider-focus orien-
tation to a patient-focus one, and the
length of time needed for the transi-
tion to take place.
Patient-centered care delivery can
appear superficial and unconvincing
if confusion exists about the mean-
ing of patient-centered care (Epstein
& Street, 2011). Patient-centered
behaviors, such as respecting pa -
tients’ preferences, should be justifi-

10. able on moral grounds alone and
independent of their relationship to
health outcomes. Berwick (2009)
claimed health system design may
affirm patient-centered care as a
dimension of quality in its own
right. Patient-centered care should
not be confirmed just through its
effect on patient or organizational
outcomes. Evidence-base literature
about identifying interventions for
improved outcomes in patient-cen-
tered care is lacking, partially due to
unclear conceptual models and gold-
standard measures (Groene, 2011).
Brief Overview of the Gap
Model of Service Quality
The Gap Model of Service Quality
(Parasuraman et al., 1985) (the Model)
is a widely used business model that
focuses on the perspectives of cus-
November-December 2013 • Vol. 22/No. 6 361
tomers to determine quality and pro-
vides an integrated view of the cus-
tomer-company relationship. The
Model is useful for evaluating
patient-centeredness in nursing care
because of its focus on the customer’s
perspective as a measurement of serv-
ice quality. In addition, it facilitates

11. the derivation of statements of
patient-centered care as an indicator
of quality health care. The Model
included five unique gaps in service
quality that can influence quality as
experienced by the customer. Based
on earlier reports (Charmel &
Frampton, 2008; IOM, 2001a), gaps
number 1, 2, 3, and 5 in the Gap
Model of Service Quality had similar-
ities to the concept of patient-cen-
tered care. A brief description of these
four gaps follows.
Gap 1. Customer expectation vs.
management perception gap. This gap,
also identified as the knowledge gap,
reveals discrepancies between man-
agers’ perceptions of customer
expectations and the actual expecta-
tions of the customers. This gap in
service quality occurs because man-
agers fail to identify customer expec-
tations accurately. The size of the gap
depends on upward communication
from customer to top management
(Parasuraman et al., 1985).
Gap 2. Management perceptions vs.
service standards gap. This gap, also
known as the design gap, measures
how well the managers’ perceptions
of customer expectations are translat-
ed into service design standards.
Service design standards are policies
and expectations of the way service is

12. to be provided. This gap depends on
managers’ belief service quality is
important and possibly dependent
on the resources available for the pro-
vision of the service. However, if
managers’ initial understanding of
customer expectations is flawed, inef-
ficient service standards inevitably
will be produced (Parasuraman et al.,
1985).
Gap 3. Service standards vs. service
delivery gap. This gap, also referred to
as the performance gap, represents
discrepancies between service design
and service delivery. This gap occurs
when the specified policies are not
followed in service delivery. The
quality of delivered service can be
affected by numerous factors, such
as skill level, type of training
received, deficiencies of human
resource policies, failure to match
supply and demand, degree of role
congruity or conflict, and job fit
(Parasuraman et al., 1985).
Gap 5. Perceived service vs. expected
service gap. This is the gap between
customers’ service expectations and
their perceptions of the service
received. According to Parasuraman
and colleagues (1985), customer
expectations are based on word-of-
mouth communications, personal

13. needs, and past experiences.
These four gaps described three
key provider abilities and one cus-
tomer ability: (a) the ability of man-
agers to identify the expectations of
their customers correctly, (b) the abil-
ity to transfer the identified expecta-
tions of their customers into the stan-
dards of service, (c) the ability to
transform these standards of service
into the actual service delivery, and
(d) customers’ perception of how the
delivered service met their expecta-
tions (Parasuraman et al., 1985).
Gaps in Patient-Centered
Care
Based on the Gap Model of
Service Quality (Parasuraman et al.,
1985), four gaps in patient-centered
care were identified (see Figure 1).
Each gap depicted in the model of
patient-centered care quality in nurs-
ing practice is described below.
Gap A. Patient expectation vs. nurse
perception gap was derived from Gap
1 in the Gap Model of Service
Quality. This gap occurs when dis-
crepancies arise between nurses’ and
nursing administrators’ perceptions
of what the patient expects and the
patient’s actual expectations. The
health care provider fails to identify

14. the patient’s expectations accurately.
Lack of communication with the
patient and an insufficient relation-
ship focus are key contributors to
this gap.
To close this gap, nurses must com-
municate with the patient in a way
that gathers his or her expectations
and needs. Epstein and co-authors
(2010) noted the communication
goes beyond facts and figures. The cli-
nician must frame and tailor informa-
tion in response to an understanding
of the patient’s concerns, beliefs, and
experiences. Aspects of the patient’s
culture, past experiences, his or her
perceptions from comments made by
others, and immediate personal
needs all shape what the patient
desires and expects from health care
services. The key to closing this gap is
to reach consensus about an
approach to care which is achieved
through shared deliberation.
Gap B. Nurse and nursing adminis-
trator perceptions vs. patient-centered
care standards gap was derived from
Gap 2 in the Gap Model of Service
Quality. This gap depends on the
health care provider’s and adminis-
trator’s beliefs that patient-centered
care is important to quality of care
and it is possible to provide patient-

15. centered care. This gap is measured
by how well the health care delivery
design matches the health care
provider’s perceptions of the pa -
tient’s expectations or needs. Indi -
vidual nurses have their own sets of
values and service standards based
on their backgrounds and what they
perceive the patient’s expectations to
be. This gap is measured by how well
the health care delivery design
matches the health care provider’s
perceptions of the patient’s expecta-
tions or needs.
To close this gap, nurse administra-
tors must decide that meeting the
needs of individual patients is a prior-
ity, set organizational standards, and
provide resources necessary to meet
those standards. Individual nurses
must decide if the provision of
patient-centered care is a priority. The
infrastructure of patient-centered care
is supported through the senior nurs-
ing team’s commitment to the princi-
ples of patient-centered care. How -
ever, development of appropriate
standards is contingent on identify-
ing patient needs correctly.
Gap C. Patient-centered care stan-
dards vs. delivery of patient-centered
care gap was derived from Gap 3 in
the Gap Model of Service Quality.
This gap represents variations in

16. service design and service delivery.
The service standards are to be
derived from the perceived expecta-
tions of patients. Service standards
are based on the principles of
Service Quality and Patient-Centered Care
November-December 2013 • Vol. 22/No. 6362
patient-centered care, and need to be
translated to actual delivery of care.
Nurses can have great impact on
closing this gap.
In practice, patient-centered care
is not offered consistently due to
nursing factors, such as poor staffing,
fatigue, burnout, and lack of educa-
tion on the delivery of patient-cen-
tered care. A qualitative meta-syn-
thesis of four studies found evidence
of sustained high commitment nec-
essary to the development of person-
centered cultures in clinical settings
(McCormack, Karlsson, Dewing, &
Lerdal, 2010). However, other cultur-
al characteristics (e.g., the level of
staff support) may determine the
extent to which that commitment
could be sustained.
Gap D. Patient expectation of health

17. care service vs. patient perception of
actual health care service received gap
was derived from Gap 4 in the Gap
Model of Service Quality. This gap
occurs when the patient’s expecta-
tions, which are molded by past
experiences, culture, personal needs,
and word of mouth, are not met or
are lacking in some way (Hunt,
2009; Parasuraman et al., 1985). In
other words, when care is not
patient-centered, patient expecta-
tions cannot be met because they are
not identified. McCormack and co-
authors (2008) suggested a direct
relationship between patients’ expe-
riences of daily care and their percep-
tions of service effectiveness.
To close this gap and understand
patient preferences, nursing adminis-
trators need to promote an interac-
tive feedback loop that provides
health care providers with a mecha-
nism to view care through the eyes of
patients and families as well as to link
the patients and nursing staff togeth-
er (DiGioia et al., 2010). A collabora-
tive relationship between health care
providers and patients can assist in
shaping realistic patient expectations
FIGURE 1.
The Four-Gap Model of Patient-Centered Care Quality in
Nursing Practice

18. Quality of
Patient-Centered
Care in Nursing
Practice
Patient perceived
service
Patient
expectation
Delivery of
patient-centered
standards
Nurse and
nursing
administrator
perception of patient
expectation
Nurse and nursing
administrator transla-
tion of perceptions into
patient-centered care
standards

19. Gap B:
Nurse and nursing
administrator perceptions
vs. patient-centered care
standards gap
Gap D: Patient expectation of
health care service vs. patient
perception of actual health care
service received gap
Gap A:
Patient expectation
vs. nurse
perception gap
Gap C:
Patient-centered care
standards vs.
delivery of patient-
centered care gap
November-December 2013 • Vol. 22/No. 6 363
related to patients’ individual health
care needs, and minimize false per-
ceptions due to lack of understand-
ing. A complex series of interactions
between nurses and patients elicit

20. trust and understanding. Nurses
need to use the knowledge gathered
from these interactions to adapt a
plan of care that reflects individual
patient needs.
Nursing Implications
Nurses may use the four-gap
model of patient-centered care qual-
ity (see Figure 1) to examine their
practice. This approach will provide
opportunity to identify gaps as well
as develop nursing practice interven-
tions to close the gaps indicated in
this new model. For example, nurse
executives and managers may devel-
op appropriate outcome measures to
monitor the closeness of each corre-
sponding gap (e.g., patient satisfac-
tion measures; patient-centered out-
comes such as survival, function,
symptoms, and health-related quali-
ty of life; clinical outcomes such as
injurious fall occurrences, nurses’ job
satisfaction measures, and intention
to quit) (DiGioia et al., 2010, Patient-
Centered Outcomes Research, 2013).
Future Research
The four-gap model of patient-cen-
tered care quality in nursing practice
needs to be tested. Understanding the
nurse-patient relationship and the
aspects of communication needed for

21. successful outcomes is essential. A
focus on patient perspectives assists in
capturing cultural, spiritual, and emo-
tional needs that otherwise may be
missed or overlooked. Future research
that captures the degrees of similarity
or difference between patient per-
spectives and provider perspectives
will help identify areas of strengths
and weaknesses for improvement.
Future research also may explore the
links between system issues, such as
the effects of nurse staffing on the
ability to deliver patient-centered
care, and the developmental process
of standards and policy for delivery of
patient-centered care.
Conclusion
Four patient-centered care serv-
ice quality gaps were identified.
Individual patient needs influence
expectations, and accurate nurse
perceptions of these needs require
communication with the patient.
Collaboration between nurses and
patients is essential to provide bet-
ter understanding of patient needs
and helps patients understand
what to expect realistically from
their health care experience. Once
pa tient needs have been assessed
accurately and understood, poli-
cies relevant to the characteristics
of the clinical settings can be estab-

22. lished to promote patient-centered
care. McClelland (2010) claimed
understanding the patient perspec-
tive of health care services is piv-
otal to the development of patient-
centered, quality services. The shift
of health care from a clinician-cen-
tric orientation to a patient-centric
one can be challenging to the
entire health care team. However,
to realize fully the benefits of
patient-centered care, nurses must
focus on achieving gains in the
quality of relationships and inter-
actions with patients (Epstein et
al., 2010).
REFERENCES
Agency for Healthcare Research and Quality.
(2009). National healthcare quality
report. Retrieved from http://ahrq.gov/
qual/qrdr09.htm
Andrews, S.M. (2009). Patient family-centered
care in ambulatory surgery setting.
Journal of PeriAnesthesia Nursing,
24(4), 244-246. doi:10.1016/j.jopan.
2009.05.100
Berwick, D. (2009). What ‘patient-centered’
should mean: Confessions of an extrem-
ist. Health Affairs, 28(4), w555-w565.
Charmel, P.A., & Frampton, S.B. (2008).
Building the business case for patient-

23. centered care. Healthcare Financial
Management, 62(3), 80-85.
DiGioia, A., III, Lorenz, H., Greenhouse, P.K.,
Bertoty, D.A., & Rocks, S.D. (2010). A
patient-centered model to improve met-
rics without cost increase: Viewing all
care through the eyes of patients and
families. Journal of Nursing Admini -
stration, 40(12), 540-546.
Epstein, R.M., & Street, R.L. (2011). The val-
ues and value of patient-centered care.
Annals of Family Medicine, 9(2), 100-
103.
Epstein, R., Fiscella, L., Lesser, C., & Stange,
K. (2010). Why the nation needs a policy
push on patient-centered health care.
Health Affairs, 29(8), 1489-1495.
Gerteis, M., Edgman-Levitan, S., Daley, J., &
Delbanco, T.L. (1993). Introduction:
Service Quality and Patient-Centered Care
Instructions For
Continuing Nursing
Education Contact Hours
Service Quality and Patient-
Centered Care
Deadline for Submission:
December 31, 2015

24. MSN J1322
To Obtain CNE Contact Hours
1. For those wishing to obtain CNE con-
tact hours, you must read the article
and complete the evaluation through
AMSN’s Online Library. Complete
your evaluation online and print your
CNE certificate immediately, or later.
Simply go to www.amsn.org/library
2. Evaluations must be completed online
by December 31, 2015. Upon comple-
tion of the evaluation, a certificate for 1.3
contact hour(s) may be printed.
Fees – Member: FREE Regular: $20
Objectives
This continuing nursing educational (CNE)
activity is designed for nurses and other
health care professionals who are interest-
ed in service quality and patient-centered
care. After studying the information pre-
sented in this article, the nurse will be able
to:
1. Describe patient-centered care.
2. Discuss gaps in patient-centered care.
3. Explain the nursing implications of using
the Gap Model of Service Quality to clar-
ify patient-centered care.
Note: The authors, editor, and education

25. direc tor reported no actual or potential
conflict of interest in relation to this continuing
nursing education article.
This educational activity has been co-provided
by AMSN and Anthony J. Jannetti, Inc.
Anthony J. Jannetti, Inc. is a provider
approved by the California Board of Registered
Nursing, provider number CEP 5387. Licensees
in the state of CA must retain this certificate for
four years after the CNE activity is completed.
Anthony J. Jannetti, Inc. is accredited as a
provider of continuing nursing education by the
American Nurses’ Credentialing Center’s
Commission on Accreditation.
This article was reviewed and formatted for
contact hour credit by Rosemarie Marmion,
MSN, RN-BC, NE-BC, AMSN Education
Director. Accreditation status does not imply
endorsement by the provider or ANCC of any
commercial product.
November-December 2013 • Vol. 22/No. 6364
Medicine and health from the patient’s
perspective. In M. Gerteis, S. Edgman-
Levitan, J. Daley, & T.L. Delbanco (Eds.),
Through the patient’s eyes: Under -
standing and promoting patient-centered
care (pp. 1-15). San Francisco, CA:
Jossey-Bass.

26. Groene, O. (2011). Patient centeredness and
quality improvement efforts in hospitals:
Rationale, measurement, implementa-
tion. International Journal for Quality in
Health Care, 23(5), 531-537.
Hobbs, J.L. (2009). A dimensional analysis of
patient-centered care. Nursing Re -
search, 58(1), 52-62.
Hunt, M.R. (2009). Patient-centered care and
cultural practices: Process and criteria
for evaluating adaptations of norms and
standards in health care institutions.
HEC Forum, 21(4), 327-339.
Institute of Medicine (IOM). (2001a). Six aims
for improvement. In Crossing the quality
chasm (pp. 41-61). Washington, DC:
National Academy Press.
Institute of Medicine (IOM). (2001b).
Executive summary. In M.P. Hurtado,
E.K. Swift, & J.M. Corrigan (Eds.),
Envisioning the national healthcare qual-
ity report (pp. 1-18). Washington, DC:
National Academy Press. Retrieved from
http://books.nap.edu/catalog.php?
record_id=10073
Johnson, B., Abraham, M., Conway, J.,
Simmons, L., Edgman-Levitan, S.,
Sodomka, P., … Ford, D. (2008).
Partnering with patients and families to
design a patient and family centered

27. healthcare system. Bethesda, MD:
Institute of Family Centered Care.
Levinson, W., Lesser, C.S., & Epstein, R.M.
(2010). Developing physician communi-
cation skills for patient-centered care.
Health Affairs, 29(7), 1310-1318.
Luxford, K., Safran, D.G., & Delbanco, T.
(2011). Promoting patient-centered care:
A qualitative study of facilitators and bar-
riers in healthcare organizations with a
reputation for improving the patient expe-
rience. International Journal for Quality in
Health Care, 23(5), 510-515.
McClelland, H. (2010). Service improvement
and patient experience. International
Emergency Nursing, 18(4), 175-176.
McCormack, B., Karlsson, B., Dewing, J., &
Lerdal, A. (2010). Exploring person-cen-
teredness: A qualitative meta-synthesis
of four studies. Scandinavian Journal of
Caring Sciences, 24(3), 620-634.
McCormack, B., Manley, K., & Walsh, L.
(2008). Person-centered systems and
processes. In K. Manley, B. McCormack,
& V. Wilson V (Eds), International prac-
tice development in nursing and health-
care (pp. 17-41). Oxford, England:
Blackwell Publishing.
Montgomery, K., & Little, M. (2011). Enriching
patient-centered care in serious illness: A

28. focus on patients’ experiences of
agency. The Milbank Quarterly, 89(3),
381-398.
Morgan, S.S., & Yoder, L. (2011). A concept
analysis of person-centered care. Jour -
nal of Holistic Nursing. doi:10.1177/
0898010111412189
Parasuraman, A., Zeithaml, V., & Leonard, B.
(1985). A conceptual model of service
quality and its implications for further
research. Journal of Marketing, 49(4),
41-50.
Patient-Centered Outcomes Research.
(2013). Patient-centered outcomes re -
search. Retrieved from http://www.pcori.
org/research-we-support/pcor/
Scott, A. (2010). Quality lessons. Patient-
centered care vital to outcomes, cost.
Modern Healthcare, 40(46), 22.
The Joint Commission. (2010). Advancing
effective communication, cultural compe-
tence, and patient- and family-centered
care: A roadmap for hospitals. Oakbrook
Terrace, IL: Author.
U.S. Department of Health & Human Services.
(2011). National quality strategy will pro-
mote better health, quality care for
Americans (press release). Retrieved
from http://www.hhs.gov/news/press/
2011pres/03/20110321a.html

29. Copyright of MEDSURG Nursing is the property of Jannetti
Publications, Inc. and its content
may not be copied or emailed to multiple sites or posted to a
listserv without …
Palliative Medicine
2016, Vol. 30(3) 224 –239
© The Author(s) 2015
Reprints and permissions:
sagepub.co.uk/journalsPermissions.nav
DOI: 10.1177/0269216315606645
pmj.sagepub.com
What is already known about the topic?
•• Early integration of palliative care into the management of
patients with serious disease has the potential to both improve
quality outcomes for patients and families and reduce healthcare
costs.
•• Despite these benefits, significant barriers exist in the United
States to the early integration of palliative care in the disease
trajectory of individuals with serious illness.
•• A number of studies have identified and discussed specific
barriers to palliative care integration, yet we lack an organized
synthesis of the data on barriers to palliative care integration
across domains.
Education, implementation, and policy
barriers to greater integration of

30. palliative care: A literature review
Melissa D Aldridge1, Jeroen Hasselaar2, Eduardo Garralda3,
Marlieke van der Eerden2, David Stevenson4, Karen
McKendrick1,
Carlos Centeno3 and Diane E Meier1,5
Abstract
Background: Early integration of palliative care into the
management of patients with serious disease has the potential to
both
improve quality of life of patients and families and reduce
healthcare costs. Despite these benefits, significant barriers
exist in the
United States to the early integration of palliative care in the
disease trajectory of individuals with serious illness.
Aim: To provide an overview of the barriers to more widespread
palliative care integration in the United States.
Design and data sources: A literature review using PubMed
from 2005 to March 2015 augmented by primary data collected
from
405 hospitals included in the Center to Advance Palliative
Care’s National Palliative Care Registry for years 2012 and
2013. We use
the World Health Organization’s Public Health Strategy for
Palliative Care as a framework for analyzing barriers to
palliative care
integration.
Results: We identified key barriers to palliative care integration
across three World Health Organization domains: (1) education
domain: lack of adequate education/training and perception of
palliative care as end-of-life care; (2) implementation domain:
inadequate
size of palliative medicine–trained workforce, challenge of
identifying patients appropriate for palliative care referral, and
need for

31. culture change across settings; (3) policy domain: fragmented
healthcare system, need for greater funding for research, lack of
adequate reimbursement for palliative care, and regulatory
barriers.
Conclusion: We describe the key policy and educational
opportunities in the United States to address and potentially
overcome the
barriers to greater integration of palliative care into the
healthcare of Americans with serious illness.
Keywords
Palliative care, barriers, integrated palliative care
1 Department of Geriatrics and Palliative Medicine, Icahn
School of
Medicine at Mount Sinai, New York, NY, USA
2 Radboud University Medical Center, Nijmegen, The
Netherlands
3 ATLANTES Research Programme, Institute for Culture and
Society,
University of Navarra, Pamplona, Spain and Palliative Medicine
Group,
Area of Oncology and Haematology, Navarra´s Health Research
Institute (IDISNA), Pamplona, Spain
606645PMJ0010.1177/0269216315606645Palliative
MedicineAldridge et al.
research-article2015
Review Article
4Vanderbilt University School of Medicine, Nashville, TN,
USA
5Center to Advance Palliative Care, New York, NY, USA

32. Corresponding author:
Melissa D Aldridge, Department of Geriatrics and Palliative
Medicine,
Icahn School of Medicine at Mount Sinai, One Gustave L. Levy
Place,
Box 1070, New York, NY 10029, USA.
Email: [email protected]
mailto:[email protected]
http://crossmark.crossref.org/dialog/?doi=10.1177%2F02692163
15606645&domain=pdf&date_stamp=2015-09-24
Aldridge et al. 225
What this paper adds?
•• Barriers in the education domain are lack of adequate
education/training and perception of palliative care as end-of-
life care.
•• Barriers in the implementation domain are the inadequate size
of the palliative medicine–trained workforce, the challenge
of identifying patients appropriate for palliative care referral,
and the need for culture change across settings.
•• Barriers in the policy domain are the fragmented healthcare
system in the United States, need for greater funding for
research, lack of adequate reimbursement for palliative care,
and regulatory barriers, particularly in the nursing home
setting.
Implications for practice, theory, or policy
•• Using the World Health Organization’s Public Health
Strategy for Palliative Care framework, the barriers we

33. identified may
be best addressed with a multipronged approach.
•• Expansion of the palliative medicine–trained workforce and
greater investment in palliative care research are critical to
building the evidence base for palliative care integration and
securing funding for palliative care services.
•• Establishment of guidelines to “trigger” palliative care
consultation may facilitate earlier integration of palliative care
for
individuals across multiple settings and in varying disease
populations.
Introduction
During the last decade, palliative care has been one of the
fastest growing trends in US healthcare. The number of
palliative care teams within US hospitals with 50 or more
beds has nearly tripled since the year 2000 to more than
1700 programs serving approximately 6 million Americans
in 2012.1 This growth has occurred primarily in response
to the increasing number of Americans living with serious
and chronic illnesses and to the caregiving realities faced
by their families. Approximately 90 million Americans are
living with serious illness, and this number is expected to
more than double over the next 25 years.2 About 20% of all
Medicare beneficiaries have five or more chronic condi-
tions, and two-thirds of Medicare spending goes to cover
their care.3 This patient population is also the most likely
to benefit from palliative care.
The dominant three palliative care delivery models in
the United States are hospital palliative care, community
palliative care, and hospice. Hospital palliative care teams
either provide consultation to the attending physician or

34. assume primary oversight of care, depending on the pref-
erences of the referring physician. Consultations occur in
the inpatient setting, the intensive care unit (ICU), and
emergency department (ED). Community palliative care
includes a range of delivery models designed to meet the
needs of seriously ill individuals and their families, outside
the inpatient or hospital setting. Palliative care may be pro-
vided in the patient’s home, a nursing home, an assisted
living facility, or an outpatient clinic such as a physician’s
office, dialysis unit, or cancer center. These care models
are developing rapidly in an effort to meet the needs of the
sickest and costliest patients—who may otherwise resort
to 911 calls, ED visits, and hospitalizations for problems
that could have been addressed safely and effectively in
the community. Hospice care is a well-known and compre-
hensive delivery model of palliative care, but in the United
States, it is limited to terminally ill patients who agree to
give up insurance coverage for disease treatment. The
Medicare hospice benefit (and those of other payer’s)
defines hospice eligibility as appropriate for patients when
two doctors certify a prognosis of 6 months to live if the
disease follows its usual course, and the patient (or surro-
gate) agrees to forgo insurance coverage for disease treat-
ment of the terminal illness.
The World Health Organization (WHO) considers pal-
liative care to be “an approach that improves the quality of
life of patients and their families through the prevention
and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual.”4–6 Early
integration of palliative care into the overall management
of patients with serious disease has the potential to improve
quality outcomes for patients and families and to reduce
healthcare costs.7–19

35. Despite these substantial benefits, there are significant
barriers in the United States to the early integration of pal-
liative care in the disease trajectory of individuals with
serious illness. Our objective is to provide an overview of
the barriers to more widespread palliative care integration
in the United States. We achieve this objective through a
review of existing literature in combination with primary
survey data from the Center to Advance Palliative Care
(CAPC). We then outline the key opportunities on the US
policy agenda for addressing these barriers to greater pal-
liative care integration in the United States.
Methodology
Framework: WHO’s public health model
Our analysis uses the WHO’s Public Health Strategy for
Palliative Care4 to frame our discussion of barriers to pal-
liative care in the United States. The public health model
226 Palliative Medicine 30(3)
postulates that in order to effectively integrate palliative
care into a society, and change the experience of patients
and families, the following components must be addressed:
(1) education of healthcare workers and the public, (2)
implementation of palliative care services at all levels
throughout society, (3) appropriate policies, and (4) ade-
quate drug availability. Our analysis will focus on policy,
education, and implementation because drug availability is
not a significant barrier in the United States to palliative
care growth.

36. Working definitions
We used the following definitions in our discussion of bar-
riers to palliative care in the United States:
1. Integrated palliative care. Integrated palliative
care involves bringing together administrative,
organizational, clinical, and service aspects in
order to realize continuity of care between all
actors involved in the care network of patients
receiving palliative care. It aims to achieve quality
of life and a well-supported dying process for the
patient and the family in collaboration with all the
care givers (paid and unpaid).20
2. Barriers to integrative palliative care. Those that
avoid bringing together administrative, organiza-
tional, clinical, and service aspects in order to realize
continuity of care between all actors involved in the
care network of patients receiving palliative care.20
Data sources
Our analysis comprised both a review of existing literature,
national/government reports, and survey data collected by
CAPC. Details regarding these sources are as follows.
Literature search. We conducted a literature search of Pub-
Med in March 2015. Our search terms included “barriers”
and “palliative care,” and we included the literature pub-
lished between 2005 and March 2015. We identified a total
of 143 publications, and two authors screened the titles
and abstracts for applicability. The following publications
were excluded: 85 that were internationally based, 20 that
were focused on the clinical treatment of patients, 11 that
were tangential to the topic of barriers to integrated pallia-

37. tive care, 9 that were focused on the pediatric population,
and 6 that were opinion pieces. We included an additional
four articles and two books identified from the reference
lists of included articles (Figure 1). We categorized the lit-
erature as either original research, review article, report, or
book and indicated the population/setting in which the
research was conducted and the type of barrier addressed
by the document using the previously mentioned WHO
public health model (Table 1).
CAPC Registry data. We used primary data collected by the
CAPC’s National Palliative Care Registry to exemplify the
barriers identified in the literature review. The National
Palliative Care Registry collects operational data on pallia-
tive care programs to promote standardization and improve
the quality of palliative care in the United States and is the
only data repository of its kind. The registry has been col-
lecting information and reporting back to hospital-based
palliative care programs since 2008, and during the past
6 years more than 1000 programs have participated. To be
eligible to submit program data to the registry, hospital-
based palliative care programs must meet the following
eligibility criteria:
1. The palliative care program is part of a formally
organized and legally constituted entity that pri-
marily provides healthcare services, or a sub-unit
Publica�ons iden�fied
through database
searching (n=143)
Addi�onal
publica�ons
iden�fied through

38. other sources (n=6)
Publica�ons excluded:
Interna�onally focused (n=85)
Clinical treatment focused (n=20)
Tangen�al to topic area (n=11)
Pediatric focused (n=9)
Opinion pieces (n=6)
Publica�ons
included in analysis
(n=18)
Figure 1. Flowchart of included and excluded publications.
Aldridge et al. 227
of a legally constituted entity that may be, but need
not be, health related.
2. The palliative care program has been providing
palliative care services for at least 1 month.
3. The palliative care program provides care to
patients at one or more locations within the
broad continuum of care settings (e.g. hospital,
home, office, long-term care, hospice, and nurs-
ing home).
4. The palliative care program representative(s) act in
good faith in providing complete and accurate
information reported on the survey.

39. This report uses registry data from 2012 to 2013 for
405 hospital-based palliative care programs throughout
the United States. Specifically, we report responses
from the following survey question: “What resource(s)
would be most helpful to you in growing your palliative
care program (consult and/or inpatient palliative care
unit)?”
Results: barriers to palliative care
integration in the United States
Our literature review resulted in 18 key papers which are
summarized in Table 1. The barriers we identified from
these papers are described in the following sections and
are summarized by the WHO domains below:
•• Education-related barriers:
|| Lack of adequate education and training for
medical residents.
|| Perception of palliative care as end-of-life care
by healthcare providers and the public.
•• Implementation-related barriers:
|| Inadequate size of palliative medicine–trained
workforce.
|| Challenge of identifying patients appropriate
for palliative care referral.
|| Need for culture change regarding palliative
care across settings.
Table 1. Key literature addressing barriers to integrated
palliative care in the United States.

40. Author name Type Setting/population Barrier category
Abrahm21 Review article Patients with cancer Education
(training)
Aldridge Carlson et al.22 Review article Nursing home setting
Policy (regulatory) and implementation
(staffing)
Dalal et al.23 Original research Patients with cancer Education
Fadul et al.24 Original research Medical oncologists Education
Feeg and Elebiary25 Original research Healthcare professionals
Education
Gavazzi et al.26 Original research Patients with heart failure or
chronic
obstructive pulmonary disease
Implementation
Goepp et al.27 Original research Healthcare professionals in a
hospital
setting
Policy, implementation, and education
Grudzen et al.28 Original research Emergency department
Implementation (culture, staffing),
education, and policy (legal concerns)
Institute of Medicine29 Report Multiple Policy, implementation,
and education

41. Huskamp et al.30 Review article Nursing home setting Policy,
implementation, and education
Kamel et al.31 Original research Residents in the ICU setting
Education: curricula, courses for
professionals, and trainees
Kavalieratos et al.32 Original research Patients with heart
failure Implementation and education
Lamba et al.33 Original research Emergency department
Implementation
Morrison34 Book Multiple Policy, implementation, and
education
Meier7 Review article Multiple Policy and education
Snow et al.35 Original research Hospital inpatient Education
(patient and family)
Song et al.36 Original research Transplant centers Education
Von Roenn et al.5 Review article Patients with cancer Policy,
implementation, and education
228 Palliative Medicine 30(3)
•• Policy-related barriers:
|| Fragmented structure of the US healthcare sys-
tem.
|| Need for greater funding for palliative care

42. research.
|| Lack of adequate reimbursement and incentives
for palliative care for complex patients.
|| Regulatory barriers to greater palliative care
integration in the nursing home setting.
Education-related barriers to palliative care in
the United States
The WHO public health model identifies the domain of
education-related barriers as curricula, courses for profes-
sionals and trainees, expert training, family caregiver
training and support, and media and public advocacy. Our
literature review identified numerous examples of lack of
education and training being a primary barrier to greater
palliative care integration in the United States. While pal-
liative care is becoming more important in today’s health
system, addressing health professionals’ lack of knowl-
edge is crucial to more widespread integration.
Lack of adequate education and training for medical resi-
dents. A number of studies sought to identify the extent of
palliative care knowledge of current US medical students
or residents across numerous settings. The fairly consistent
conclusion was that students in US medical schools had
very little to no training in palliative care and did not feel
confident to handle situations that required palliative care
consultation.
For example, one study31 evaluated residents in the
ICU setting and surveyed them to assess their knowl-
edge, skills, and perceived barriers toward palliative care
in the ICU. This study found that the most common bar-
rier identified by residents (19%) was discrepancies in

43. goals of care between the medical team and patients/
families. In addition, residents reported that a palliative
care consult was most commonly obtained when the
patient was terminally ill (23%) as opposed to further
upstream in the course of illness. The authors suggest that
resident teaching should focus on overcoming communi-
cation barriers with patients and their families and identi-
fying the best method to teach palliative care in the ICU
setting.
Similarly, a paper regarding the integration of palliative
care into comprehensive cancer care recommended greater
training of fellows and practicing oncologists in palliative
care skills, including communication, and methods of pre-
venting and treating compassion fatigue.21 A qualitative
study regarding provider perceptions of barriers to inte-
grated palliative care similarly found that there was a need
for organized educational services that crossed discipli-
nary lines.27
Perception of palliative care as end-of-life care by healthcare
providers and the public. A number of studies in our review
discussed the perception of palliative care in the United
States as equivalent to end-of-life care as a major barrier to
greater upstream integration of palliative care in patients’
disease course. We considered this as an education-related
barrier because it can be overcome with knowledge and
understanding of palliative care both through clinical and
professional training as well as through public health edu-
cation. A recent review5 concluded that the most signifi-
cant barrier to the integration of palliative care at all stages
in the treatment of patients with cancer is the largely clini-
cian perception that it is end-of-life care. The authors noted
that
an assessment of perceptions and experiences of palliative

44. care providers indicated that some health care professionals
viewed palliative care as being primarily focused on symptom
control for terminal patients and that these professionals saw
palliative care as a consideration only after all disease-
modifying treatment had ceased.5
They found that these misperceptions were also identi-
fied in multiple other studies.
One series of studies hypothesized that the perceived
association between the names “palliative care” and “hos-
pice” was a barrier to early patient referral. The studies
aimed to determine whether a service name change from
“palliative care” to “supportive care” was associated with
earlier referrals of patients to palliative care services. In
the first study,24 the authors found that the name “palliative
care” was perceived by 140 medical oncologists and mid-
level providers as more distressing and reducing hope to
patients and families compared with the term “supportive
care.” Medical oncologists and mid-level providers sig-
nificantly preferred the name “supportive care” and stated
that they would be more likely to refer patients on active
primary and advanced cancer treatments to a service
named “supportive care.”
In actual clinical practice, the second study23 found that
the name change from “palliative care” to “supportive
care” impacted referral rates. In this study, the authors
examined the records of 4701 consecutive patients with a
first palliative care consultation before and after a name
change from “palliative care” to “supportive care” to
determine the rate and timing of palliative care referral.
They found that after the name change, there were a 41%
greater number of palliative care consultations mainly as a
result of a rise in inpatient referrals. In the outpatient set-
ting, they found a shorter duration from hospital registra-

45. tion to palliative care consultation and from advanced
cancer diagnosis to palliative care consultation occurred.
These results suggest that the perception of palliative care
as end-of-life care is a barrier to palliative care integration.
Although some debate exists regarding the equivalence of
the terms, “palliative care” and “supportive care,”37 both
supportive care in cancer and palliative care have their
Aldridge et al. 229
own origins, history, and background and may be primary,
secondary, or tertiary.38 In current practice, both approaches
share mutual interests that have the potential to stimulate
earlier integration in the disease process.
A number of studies surveyed physicians in various set-
tings regarding barriers to palliative care integration find-
ing that the perception of palliative care as end-of-life care
was a significant barrier. For example, a survey of 155
physicians caring for patients with lung cancer found that
48% of physicians referred fewer than 25% of their patients
for palliative care consultation. A major reason for this low
referral rate was concern that a palliative care referral
would alarm patients and families.5,39 Similar concerns
regarding the expectations of patients and families were
voiced in two other studies. In one study, a survey of 74
physicians found that the most commonly endorsed barrier
to palliative care referral in the hospital setting was the
patient and/or family’s perceived unrealistic expectations
regarding disease prognosis.35 In another study summariz-
ing barriers to palliative care in the ICU, inflated expecta-
tions regarding critical care therapies and preoccupation
with an unattainable level of prognostic certainly are two
important barriers to earlier palliative care intervention.40

46. A study of 74 clinicians across 27 lung transplant centers
found that the misconception of palliative care as end-of-
life care was a major reported barrier, along with uncer-
tainty about patient prognosis and perception that palliative
care precludes more aggressive treatment.36 Similarly, sur-
vey respondents attending a national palliative care con-
ference rated the top three barriers to greater use of
palliative care and hospice as (1) physician’s reluctance to
make referrals, (2) physician’s lack of familiarity with
availability and suitability of hospice, and (3) association
of hospice with death.25
These studies illustrate that the misperception of pallia-
tive care as end-of-life care and as not compatible with
ongoing treatment is a significant barrier to palliative care
integration in the United States. To address this barrier,
better education about palliative care, for both healthcare
providers and the public, could potentially result in greater
use and earlier integration of palliative care services for
patients with serious illness. These opportunities and ini-
tiatives are discussed in the “Options to expand integrated
palliative care in the United States” section.
Implementation barriers to palliative care in the
United States
The WHO public health model identifies the domain of
implementation-related barriers as those related to opinion
leaders, trained manpower, strategic and business plans
(including resources and infrastructure), and the existence
of standards and guideline measures.4 Our literature review
identified a number of significant implementation barriers
to greater integration of palliative care in the United States.
Inadequate size of the palliative medicine–trained work-
force. A major barrier facing the expansion of palliative

47. care services in the United States is the lack of palliative
medicine–trained physicians, nurses, social workers, and
other disciplines. Where there is approximately one cardi-
ologist for every 71 persons experiencing a heart attack
and one oncologist for every 141 newly diagnosed cancer
patients, there is only one palliative medicine physician for
every 1200 persons living with a serious or life-threatening
illness.41 A recent analysis by the American Academy of
Hospice and Palliative Medicine’s Workforce Task Force
estimated that the gap between the current supply and the
hypothetical demand for hospice and palliative medicine–
trained physicians to reach mature staffing levels was
2787–7510 full-time equivalents, which equates to 6000–
18,000 individual physicians, depending on what propor-
tion of time each physician devotes to hospice and
palliative medicine practice.42
Primary data collected by the CAPC’s National
Palliative Care Registry suggest the significance of this
barrier to greater integration of palliative care in the United
States. Our analysis of the annual program data for years
2012 and 2013 from 405 hospital-based palliative care
programs nationwide finds that the barrier most often cited
as hampering palliative care program growth is the need
for additional staff (Table 2). Registry data show that 80%
of programs report the need for funds to hire staff as the
number one barrier to palliative care expansion. In addi-
tion, even when funds are available to hire palliative med-
icine–trained professionals, 26% of programs report
difficulty recruiting appropriate staff to already funded but
open positions, also a significant barrier to the expansion
of their program.
Analyses of registry data from years 2012 and 2013
also show that higher staffing levels in hospital-based pal-
liative care programs are a key determinant of higher pal-

48. liative care penetration in the hospital (i.e. serving more
patients in need).1 Figure 2 shows the mean palliative care
service penetration for palliative care teams, from the low-
est to the highest quartiles in terms of staffing.
In addition to the hospital setting, a recent study22 of bar-
riers to greater palliative care integration in the nursing
home setting found that the most immediate barrier to
improving access to palliative care in nursing homes is
inadequate training and numbers of staff. Nursing homes
face a significant labor shortage and high turnover because
of the difficulty of the work, inadequate pay, low respect,
and demanding paperwork and regulatory requirements.43,44
The adequacy of nursing home staffing is a significant
issue in the United States, and strong evidence supports the
relationship between increases in nurse staffing ratios and
avoidance of critical quality of care problems.45 Nursing
homes tend to have lower proportion of registered nurses
(RNs) than other healthcare settings,43 and RNs working in
nursing homes often have administrative and supervisory
230 Palliative Medicine 30(3)
duties and deliver little direct patient care. It has been sug-
gested that a stronger physician presence and oversight of
physicians trained in palliative care are needed to improve
access and quality of palliative care in the nursing home
setting.44
There are two principal reasons for the shortage of
palliative medicine providers across disciplines and set-
tings. First, palliative medicine is a new specialty, for-
mally recognized in 2007. Thus, although the number of
training programs is increasing, as of 2014 there were

49. only 115 Accreditation Council for Graduate Medical …
International Journal of Palliative Nursing 2015, Vol 21, No 3�
109
©
2
01
5
M
A
H
ea
lth
ca
re
L
td
Abstract
Introduction: Effectively discussing palliative care with patients
and
families requires knowledge and skill. The purpose of this study
was
to determine perceived needs of inpatient nurses for
communicating
with patients and families about palliative and end-of-life (EoL)
care.

50. Method: A non-experimental design was used. In total, 60
inpatient
nurses from one hospital in Idaho completed the End of Life
Professional Caregiver Survey (EPCS), which examines three
domains: patient and family-centered communication, cultural
and
ethical values, and effective care delivery. Results: The number
of
years’ experience nurses had (F(9,131.57)=2.22, p=0.0246;
Wilk’s ^=0.709) and the unit they worked on (F(6,110)=2.49,
p=0.0269; Wilk’s ^=0.775) had a significant effect on their
comfort
discussing EoL and palliative care with patients and their
families. For
all three domains, years of nursing experience was positively
associated with comfort in communicating about EoL care.
Oncology
nurses were most comfortable with regard to patient and
family-centered communication. Discussion: The success and
sustainability of this service is dependent on education for
health-care providers. Studies are needed to determine the most
effective ways to meet this educational challenge.
Key words: Palliative care l End-of-life care l End-of-life
Professional Caregiver Survey l Patient-centered nursing
This article has been subject to double-blind peer review.
Review of the literature and the authors’ experiences have
revealed that inpatient staff nurses may not be prepared to pro-
vide optimal end-of-life (EoL) and palliative
care to patients and their families (Chan and
Webster, 2013; Patel et al, 2012; Prem et al,
2012; Agustinus and Chan, 2013). Palliative
care patients can continue to seek curative treat-
ments while evaluating their goals and care
needs. EoL care patients are usually no longer

51. receiving aggressive curative treatment, instead
they are receiving comfort care only. In the US,
the word ‘hospice’ is interchangeable or synony-
mous with EoL care. These patients usually die
at home or in the intensive care unit, limiting
the contact a regular staff nurse may have in
providing care for them. Nurses who are skilled
and comfortable in communicating with
patients and families about EoL (hospice) and
palliative care may improve the quality of life
for these patients in the hospital setting.
Some patients will make the transition from
curative-based care to hospice care during a hos-
pital stay. Whether the transition is made
smoothly and gradually, depends on the kind of
communication and education patients receive
from doctors, nurses, and other caregivers while
in the hospital (Adams, 2005; Beck et al, 2012;
van Brummen and Griffiths, 2013). Palliative
care options should be provided to patients in a
way that helps them understand the goals and
how it differs from EoL care. However, many
people opt for palliative care only when they are
very close to the end of their lives (Raijmakers et
al, 2011; Wilson et al, 2011).
It seems reasonable to assume that a lack of
education and accompanying uneasiness among
clinical nurses in discussing palliative care with
patients and their families may negatively
impact the transition from curative-based care
to hospice care. The current research focused on
the role of the nurse during the transition in
patients’ lives from curative to palliative care.
The study aim was to determine the perceived

52. educational needs of inpatient staff nurses in the
authors’ facility when communicating with
patients and families about palliative and
EoL care.
Methods
A non-experimental survey design was used to
examine differences based on the age of the
nurse, years of nursing experience, and the unit
on which he/she worked.
End-of-Life Professional Caregiver
Survey (EPCS)
To measure educational needs among nurses
with regard to communicating about palliative
and EoL care and their current degree of com-
fort in caring for this patient population, the
Research
Communicating with patients and their
families about palliative and end-of-life care:
comfort and educational needs of nurses
Cheryl Moir, Renee Roberts, Kim Martz, Judith Perry and Laura
J Tivis
Cheryl Moir, Home
Care/Hospice, Care
Coordinator, St. Luke’s
Health System, Boise,
Idaho, US; Renee
Roberts, Clinical Nurse,
Bone Marrow
Transplant, University of

53. Colorado Hospital,
Aurora, Colorado, US;
Kim Martz, Assistant
Professor, Boise State
University, Idaho, US;
Judith Perry, Home
Care/Hospice, Nurse
Practitioner, St. Luke’s
Health System, Boise,
Idaho, US; Laura Tivis,
Nursing Research
Director, St. Luke’s
Health System, Boise,
Idaho, US
Correspondence to:
Cheryl Moir
[email protected]
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End-of-Life Professional Caregiver Survey
(EPCS) was used in this study. The EPCS was
distributed to a convenience sample of clinical
nurses working exclusively in telemetry, oncol-
ogy and critical care units (Lazenby et al, 2012).
Permission to use the EPCS was granted by the
survey designers. The EPCS is a 28-item, psy-
chometrically valid scale developed to assess the
palliative and EoL educational needs of profes-
sionals, and was validated in a large study
encompassing doctors, nurses and social work-
ers (Lazenby et al, 2012). For each item, a
5-point Likert-style scale was presented (range:
not at all to very much). Items represent care-
provider comfort and skill with a variety of situ-
ations related to palliative and EoL care (e.g. ‘I
am comfortable helping families to accept a
poor prognosis’). Higher scores indicate greater
skill or comfort and skill. Three distinct factors
were identified by Lazenby et al (2012):
(1) patient and family-centered communication
(PFCC), (2) cultural and ethical values (CEV),
and (3) effective care delivery (ECD) (Lazenby
et al (2012: 429).
Data collection

55. Data were collected over a 1-month period in
2013. The survey was conducted at a 378-bed
hospital in Idaho. Telemetry, oncology, and criti-
cal care units were chosen because patients on
these units were most often among those transi-
tioning from curative-based care to EoL care. The
three units employed a combined clinical nursing
staff of approximately 215 (telemetry unit 90,
oncology 35, and critical care 90).
Recruitment emails were sent to 175 clinical
nurses (identified from the 215 as having active
email addresses) employed on the designated
units, requesting participation in the research
project. In addition, recruitment flyers were
posted on the selected units to inform nurses of
the project and request participation.
Both online and handwritten survey options
were available, and both options were anony-
mous. Handwritten surveys were made available
on each of the telemetry, oncology and critical
care units in the hospital. An investigator-
addressed envelope was attached to each paper
survey for nurses to return the completed instru-
ment through the hospital’s internal mail system
to retain anonymity. The handwritten surveys
were kept in a locked office and shredded after
data collection was complete. The online survey
was hosted by REDCap (Research Electronic
Data Capture) at the University of Washington,
Institute of Translational Health Sciences (https://
www.iths.org/).
Ethical considerations
Data collection began following approval from

56. the hospital Institutional Review Board (IRB).
Permission to distribute the survey was also
acquired from individual unit managers prior
to distribution.
Data analysis and results
In total, 60 nurses participated in the survey. Based
on the number of active email addresses within the
three units, this reflects a 34% participation rate.
Data were analysed using SAS 10.0 software.
Descriptive statistics and Chi-Square were used to
analyse demographic information. PFCC, DEV
and ECD domain scores were calculated as
described by Lazenby et al (2012). Mulitvariate
analysis of variance (MANOVA) was used to
determine overall effects of age of the nurse, unit
the nurse works in, and years of nursing experience
across domain scores. Duncan’s Multiple Range
Test was used to conduct post-hoc comparisons to
determine within-domain differences.
Sample distribution across the units was
roughly even, with about 37% of respondents
were from critical care units, 26% from oncology
units, and 37% from telemetry units.
The majority of respondents were under
50 years of age: 41% were younger than 30
years, 43% were between 30 and 49 years, and
only 16% were 50 years or older. Participant age
did not differ between the hospital units included
(likelihood ratio χ2(6, n=58) =5.68, p=0.46).
Most of the respondents had 2–10 years of
nursing experience: 12% had less than 2 years,
33% had 2–5 years, 29% had 5–10 years, and

57. 27% had more than 10 years’ experience. In
all, years of experience did not significantly
differ between work units (likelihood ratio
χ2(6, n=60) =9.98, p=0.13).
MANOVA revealed that there was an overall
effect of experience and unit, but no effect of age
[Experience: F(9,131.57)=2.22, p=0.0246;
Wilk’s ^=0.709; Unit: F(6,110)=2.49, p=0.0269;
Wilk’s ^=0.775; Age: F(9,126.7)=1.19, p=0.3083;
Wilk’s ^=0.821].
In contrast to the effect of years of experience
on comfort level, only the PFCC domain revealed
differences by unit. Oncology nurses reported sig-
nificantly higher comfort levels than critical care
or telemetry nurses with regard to patient and
family-centered communication (see Table 1).
Discussion
The transition to palliative and/or EoL care can be
difficult for patients and their families. During this
transition, they may have many questions as they
sort through the emotional and logistical aspects
❛ Palliative care
options should
be provided to
patients in a
way that
helps them
understand the
goals and how
it differs from

58. EoL care.❜
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of the situation. Questions might include: What is
the difference between palliative and EoL care?
How does one access these services? What can one
expect from them? In order to answer these ques-
tions, health-care staff must possess a basic knowl-
edge of palliative and EoL care.
Overall, the data suggest that the nurses in this

59. study self-report a moderate to high comfort level
with their skills in the areas assessed by the EPCS,
with more experienced nurses scoring higher than
those with less nursing experience.Oncology
nurses scored highest in all domains and signifi-
cantly higher than their telemetry counterparts,
on the PFCC domain. This likely reflects their
greater degree of experience communicating with
patients and their families about palliative and
EoL care options, validating both the instrument
and the nurse populations in our study.
Scores were lowest within the ECD domain,
suggesting that all nurses, across patient popula-
tion areas, may benefit from EoL care education
in order to increase their own skill and comfort
in caring for these patients. ECD items focus on
familiarity with palliative and EoL care, effective-
ness at helping in EoL patient situations, and
resource availability (Lazenby et al, 2012).
Anecdotally, several nurses reported to the study
team members that they thought EoL education
would benefit them in communicating with
patients and their families.
Future research
This study demonstrated that the less experi-
enced nurses expressed some discomfort in com-
municating with patients at the end of life and
their families. Hence, the authors suggest that
further exploration of educational needs among
staff nurses regarding palliative and EoL care is
required. This exploration may lead to the devel-
opment of educational interventions designed to
increase nurses’ comfort in speaking to patients
and their families. Therefore future studies

60. should focus on assessing specific educational
needs of non-oncology clinical nurses. These
nurses are unlikely to routinely care for EoL
patients and may not understand the dilemma
patients and their families face when transition-
ing from palliative to EoL care.
Palliative care and EoL patients are found in
hospital and community settings; therefore, any
educational intervention should include health
providers in outpatient areas and especially in
home-care services.
Limitations
There were several limitations to this study. First,
the sample was relatively small (despite repre-
senting one-third of nurses in the three areas of
interest). While a 30% response rate seems rea-
sonable, internal employee surveys can be much
higher (EngagedMetrics, 2013; CustomInsight,
2014; Surveygizmo, 2014). However, because this
was a voluntary research study of nurses, under-
taken by nurses, and not an employer-initiated
engagement-type survey, response rates in the
80–90% range are not reasonable or expected.
Even so, the results of this study may not be gen-
eralisable and should be interpreted with caution.
Another limitation to this study was the
restricted population of nurses who participated
(i.e. all were from one hospital).
A final limitation to this study is a small data
collection flaw within the demographic portion
Table 1. Comfort level by unit

61. Domain Unit nurses
work on
Mean comfort level ±
SD (Duncan Grouping)
Number of
participants
Patient and family-
centered
communication
(PFCC)
Oncology 4.18 ± 0.50 (A) 16
Intensive care
unit (ICU)/critical
care unit (CCU)
3.96 ± 0.46 (A,B) 22
Telemetry 3.76 ± 0.70 (B) 22
Cultural and ethical
values (CEV)
Oncology 3.67 ± 0.67 (A) 16

62. ICU/CCU 3.69 ± 0.59 (A) 22
Telemetry 3.32 ± 0.83 (A) 22
Effective care
delivery (ECD)
Oncology 3.53 ± 0.54 (A) 16
ICU/CCU 3.18 ± 0.64 (A) 22
Telemetry 3.18 ± 0.77 (A) 22
Within each domain, means with the same letter are not
significantly different.
Table 2. Comfort level by years of experience
Domain Experience
(years)
Mean comfort level ±
SD (Duncan Grouping)
Number of
participants
Patient and family-
centered communication
(PFCC)
< 2 3.42 ± 0.33 (C) 7

63. 2–5 3.77 ± 0.65 (B,C) 20
5–10 4.03 ± 0.44 (A,B) 17
>10 4.31 ± 0.48 (A) 16
Cultural and ethical
values (CEV)
< 2 3.00 ± 0.60 (C) 7
2–5 3.28 ± 0.80 (B,C) 20
5–10 3.75 ± 0.51 (A,B) 17
>10 3.92 ± 0.59 (A) 16
Effective care delivery
(ECD)
< 2 2.79 ± 0.37 (B) 7
2–5 3.18 ± 0.87 (A,B) 20
5–10 3.33 ± 0.49 (A) 17
>10 3.55 ± 0.58 (A) 16
Within each domain, means with the same letter are not
significantly different.

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of the information collected. Specifically, hand-
written respondents were asked to indicate their
years of nursing experience: less than 2 years,
2–5 years, 5–10 year, or >10 years. Post-hoc, the
investigators became aware that those with five
years of experience may have chosen 2–5 or
5-10 years. No feedback was received with
regard to this issue to suggest which category
individuals with 5 years of experience chose.
Because the study was anonymous, there was no
way to re-survey the respondents in order to

65. ascertain the correct category for this subgroup.
As Table 2 shows, the domain scores did not
differ for those with 2–5 years and 5–10 years.
It is possible that there may have been differ-
ences if the categories had been designed with
exclusivity (e.g. 2–5, 6–10).
Implications and conclusions
This study has important implications around the
need for enhanced communication with patients
and their families about palliative and EoL care,
particularly among less-experienced nurses and
those not working in oncology units. The transi-
tion point from curative to palliative care can be
a challenging time for nurses and patients.
Nurses developing skills and knowledge in this
area will enable them to help patients and their
families make smoother transitions. This study
shows a moderate level of perceived skill, with a
stronger need for additional knowledge among
those nurses with less experience both in terms of
years as a nurse and patient population.
Understanding the best way to develop that edu-
cation is an important subject for future
researchers.
The authors concluded that additional educa-
tion for less experienced nurses could increase
comfort levels in all domains and improve care
for EoL patients.
Going forward, the survey used in this study
will be applied to home-health nurses to assess
their level of comfort with palliative care patients
on their service. Using the responses from the
survey, online educational modules will be devel-

66. oped by an inter-professional committee to
address basic palliative nursing care areas identi-
fied by survey participants as an area of educa-
tional need.
Palliative and EoL care will expand and move
beyond hospitals to home-based care, long-term
care and other community settings. The success
and sustainability of this service will be dependent
upon meaningful training of all health-care pro-
viders. Further studies will be needed to determine
how best to meet this educational challenge.
Acknowledgments
The authors wish to thank Mr. Rick Tivis (Biostatistician),
Mr. David Kent (4S Oncology Director) and Ms. Mary Lou
Long (Home Care/Hospice former Director) for their con-
tributions to this work. Special thanks to Mr. Danh
Nguyen, Nursing Student Research Assistant. We also wish
to acknowledge the support of the Institute of
Translational Health Sciences (ITHS; grant UL1TR000423
from NCRR/NIH).
Declaration of interests
The authors have no conflicts of interest to declare.
Adams M (2005) Patient and care satisfaction with palliative
care services: A review of the literature. ACCNS Journal
for Community Nurses 10(2): 11–4
Agustinus S, Chan SWC (2013) Factors affecting the attitudes
of nurse towards palliative care in the acute and long term
care setting: a systematic review. JBI Library of Systematic
Reviews and Implementation Reports 11(1), 1–69
Beck I, Tornquist A, Brostrom L, Edberg AK (2012) Having to

67. focus on doing rather than being: nurse assistants’ experi-
ence of palliative care in municipal residential care settings.
Int J Nurs Stud 49(4):455–64
Chan R, Webster J (2013) End-of-Life pathways for improv-
ing outcomes in caring for the dying. Cochrane Database
Syst Rev 11:CD008006. doi: 10.1002/14651858.
CD008006.pub3
CustomInsight (2014) Increase response rates on employee
surveys. http://tinyurl.com/n4bhts6 (accessed
9 March 2014)
EngagedMetrics (2013) Employee Survey Average Response
Rates. http://tinyurl.com/kccox8a (accessed 2 March 2015)
Lazenby M, Ercolano E, Schulman-Green D, McCorkle R
(2012) Validity of the end-of-life professional caregiver
survey to assess for multidisciplinary educational needs. J
Palliat Med 15(4): 427–31
Patel B, Gorawara-Bhat R, Levine S, Shega JW (2012) Nurs-
es’ attitudes and experiences surrounding palliative seda-
tion: components for developing policy for nursing profes-
sionals. J Palliat Med 15(4): 432–7
Prem V, Karvannan H, Kumar SP et al (2012) Study of nurses’
knowledge about palliative care: a quantitative cross-sec-
tional survey. Indian J Palliat Care 18(2): 122–7
Raijmakers NJ, van Zuylen L, Costantini M et al (2011) Is-
sues and needs in end-of-life decision making: an interna-
tional modified Delphi study. Palliat Med 26(7): 947–53
Surveygizmo (2014) Survey response rates. http://tinyurl.com/
ycworuj (accessed 2 March 2015)

68. van Brummen B, Griffiths L (2013) Working in a medicalised
world: the experience of palliative care nurse specialists
and midwives. Int J Palliat Nurs 19(2): 85–91
Wilson F, Gott M, Ingleton C (2011). Perceived risks around
choice and decision making at end-of-life: a literature re-
view. Palliat Med 27(1): 37–53
❛ ... any
educational
intervention
should include
health providers
in outpatient
areas and
especially in
home-care
services.❜
Correspondence
International Journal of Palliative Nursing welcomes
correspondence relating to any of its content, whether only
for the Editor’s attention or for publication in the journal.
We also encourage letters on any relevant aspects of palliative
care from authors who would like to communicate
with the readership without necessarily wanting to publish a
full-length article.
To submit correspondence or discuss the publication potential
of a piece, please contact
the Editor: [email protected]
Copyright of International Journal of Palliative Nursing is the
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