November-December 2013 • Vol. 22No. 6 359Beverly Waller D.docx

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
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

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 -

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)

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,

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.

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-

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-
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

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

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

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

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-

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

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
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

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

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

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
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

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

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-

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).
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Instructions For
Continuing Nursing
Education Contact Hours
Service Quality and Patient-
Centered Care
Deadline for Submission:
December 31, 2015

MSN J1322
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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

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.
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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

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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
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
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
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
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
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
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.
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-
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
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.
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.
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
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
•• Policy-related barriers:
|| Fragmented structure of the US healthcare sys-

tem.
|| Need for greater funding for palliative care
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
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
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-
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
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
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-
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
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
only 115 Accreditation Council for Graduate Medical
Education (ACGME)—accredited hospice and palliative
medicine fellowship training programs in the United
States46—collectively producing approximately 280 new
palliative medicine physicians annually, which does not
even replace the number of hospice and palliative medi-
cine physicians who retire each year.42 Second, Medicare
funding, which currently supports the majority of post–
medical school residency training for physician special-
ties in the United States, does not support palliative
medicine specialty training. This is a consequence of the
1997 Balanced Budget Act’s cap on Medicare-funded
graduate medical education slots. The majority of aca-
demic medical centers, the site of training for medical
Table 2. Center to Advance Palliative Care’s National Palliative
Care Registry data (2012 and 2013).
What resource(s) would be most helpful to you in growing your
palliative care program (consult and/or
inpatient palliative care unit)?
Yes
Total respondents = 405 n %
Funds to hire additional staff 324 80
Data on impact of palliative care on 30-day readmissions,
mortality, and other performance measures 291 72
Cost-impact data on the impact of palliative care on the
hospital’s bottom line 245 60

Resources to facilitate outreach education and generalist
training about palliative care for other clinicians 241 60
Help in designing a data capture system to document the
outcomes of our service 201 50
Help in implementing triggers or specialty-specific pilots 153
38
Help with evaluating team roles, workload, and payment
practices 144 36
Additional clinical training (e.g. pain/symptom management,
communication) for the palliative care
program staff
124 31
Help in recruiting appropriate staff to already funded but open
positions 105 26
Visiting/observing a well-functioning palliative care service 94
23
Help in writing a palliative care business plan 76 19
Help in completing a needs assessment/data collection project
to demonstrate the need for palliative
care
61 15
Onsite consultation visit from a pediatric/adult palliative care
leader 56 14
Literature citations documenting the benefits of palliative care
55 14
Other (specify) 18 4
Figure 2. Impact of staffing on reaching patients in need.
Source: Center to Advance Palliative Care.1

Aldridge et al. 231
students, residents, and fellows, currently are at or
exceed their graduate medical education residency cap
in terms of numbers of slots receiving Medicare gradu-
ate medical education funding. As a result, Medicare
funding is unavailable for training palliative medicine
physicians, and current palliative medicine fellowship
training programs are inadequately supported by scarce
philanthropic funding.
Challenge of identifying patients appropriate for palliative care
referral. Greater integration of palliative care in the United
States is also hampered by the substantial challenge of iden-
tifying and referring patients appropriate for palliative care
consultation in a timely manner. Although this barrier relates
both to the misperception of and lack of workforce training
in palliative care, a literature review suggests that it is also a
type of implementation barrier to the expansion of palliative
care in the United States. The challenge of identifying
patients appropriate for palliative care referral is present for
both patients (and their families) and providers47–49 as dem-
onstrated in a number of studies.
For example, a public opinion poll of 800 adults con-
ducted in 2011 by CAPC and the American Cancer Society
reported that once informed, the vast majority (94%) of
those polled wanted palliative care for themselves or a
loved one in the face of a serious illness, felt it was impor-
tant that patients and their loved ones were educated about
palliative care, felt it was important that all hospitals
offered palliative care services, and believed that palliative
care services should be covered by health insurance. Three
main barriers to the receipt of palliative care were identi-
fied:47 (1) a lack of awareness of palliative care services
among respondents, (2) the tendency of clinicians to

equate palliative care with end-of-life care (as previously
described), and (3) lack of adequate reimbursement for
palliative care services by insurers. A separate poll,48 sur-
veying 500 US board–certified physicians, acknowledged
concerns about incorporating palliative care, including the
concern that introducing palliative care could interfere
with therapy directed at extending life as long as possible
(42%), inadequate patient resources (78%), issues related
to reimbursement (82%), and a shortage of palliative care
physicians and services (78%). In addition, this survey
identified gaps in the education of physicians in palliative
care during medical school based on physician age. The
majority (73%) of physicians aged 39 years or younger
reported exposure to palliative care during medical school,
while only 36% of those aged 40–49 years, 23% of those
aged 50–59 years, and 6% of those aged 60 years or older
were exposed to palliative care during training.
The need to better identify patients appropriate for pal-
liative care is exemplified by results of a survey of almost
170 patients with advanced cancer that evaluated both
unmet needs for and interest in palliative care services.50
More than 60% of patients reported unmet needs, primarily
characterized as psychological/emotional or symptom-spe-
cific, and both were significantly associated with self-per-
ceived need for palliative care services. The presence of
these needs, however, was not associated with the likeli-
hood that patients would initiate a request for services. This
finding underscores the need for physician-initiated discus-
sions of palliative care because patients were willing to
proceed if it was suggested by their oncologist. Another
study of patients with cancer, conducted at Mount Sinai
Hospital, found that using standardized criteria for pallia-
tive care consultation for oncology in patients markedly
increased the number and impact of palliative care consul-

tations for this population, resulting in substantial reduc-
tions in 30-day readmissions and hospital mortality.51
In the ED setting, the lack of clear guidelines regarding
the identification of patients appropriate for palliative care
consult was considered a major barrier to greater integra-
tion of palliative care by ED physicians. In a survey of 30
ED physicians at an urban, level-1 trauma center, respond-
ents identified two major barriers to ED palliative care
provision: lack of 24-h availability of a palliative care
team and lack of access to complete medical records.33
The authors noted that
Almost all respondents agreed they would initiate a palliative
care consultation for a hospice patient in respiratory distress,
and the majority would consult for massive intracranial
hemorrhage, traumatic arrest, or metastatic cancer. However,
inpatient triggers like frequent readmits for organ failure
issues, e.g. dementia, congestive heart failure, and chronic
obstructive pulmonary disease were rarely chosen for an ED
palliative care consultation.
The authors concluded that outlining ED-specific triggers
may help streamline the palliative care consultation process.
The need to establish clear triggers for referral to pallia-
tive care consultation was also evidenced in the study of
patients with heart failure.26,32 One recent study32 found
that providers had limited knowledge regarding what pal-
liative care is and how it can complement traditional heart
failure therapy to decrease heart failure–related suffering.
This study also identified several potential barriers to pal-
liative care integration: the unpredictable course of heart
failure, lack of clear referral triggers across the heart fail-
ure trajectory, and ambiguity regarding what differentiates
standard heart failure therapy from palliative care.

Need for culture change regarding palliative care across set-
tings. A number of barriers discussed in this report relate to
the need for greater understanding and acceptance of pallia-
tive care as an upstream service in conjunction with ongo-
ing medical treatment. One implementation-related barrier
found in a recent qualitative study of hospital administra-
tors suggests that a similar type of culture change is needed
for greater implementation of palliative care in the ED.28 In
this study, semi-structured interviews were conducted with
14 key informants, including hospital executives, ED direc-
tors, and palliative care directors at a tertiary care center, a
public hospital, and a community hospital. Qualitative
analyses revealed that barriers to integrating palliative care
and emergency medicine from the administrative perspec-
tive included the ED culture of aggressive care, limited
knowledge, palliative care staffing, and medicolegal con-
cerns. Incentives to the delivery of palliative care in the ED
from these key informants’ perspective include improved
patient and family satisfaction, opportunities to provide
meaningful care to patients, decreased costs of care for
admitted patients, and avoidance of unnecessary admis-
sions to more intensive hospital settings, such as the ICU,
for patients who have little likelihood of benefit. Therefore,
although the hospital administration had great interest in
integrating palliative care and emergency medicine to
improve quality of care, patient and family satisfaction, and
decreased length of stay for admitted patients, palliative
care staffing, medicolegal concerns, and logistic issues
were significant perceived barriers.

Policy-related barriers to palliative care
integration in the United States
The WHO public health model identifies the policy com-
ponents required for effective palliative care integration as
including palliative care as part of national health plans,
policies, and regulations; funding and service delivery
models that support palliative care delivery; and the exist-
ence of an essential medicines policy.4 The results of our
literature review identified numerous policy-related barri-
ers to greater implementation of palliative care in the
United States.
Fragmented structure of the US healthcare system. As
described in a recent Institute of Medicine report,29 the
healthcare payment system in the United States rewards the
volume of medical procedures and therapies provided and
typically neither recognizes nor pays for the day-to-day,
long-term services that are needed for people with serious
illness. In the United States, the traditional model of medical
care has been dichotomous, with curative or disease-modi-
fying treatment offered initially and comfort care through
hospice provided only when/if these measures are no longer
appropriate. However, many illness situations and personal
goals do not lend themselves well to such dichotomous ser-
vice models.52 For example, heart failure is characterized by
stable disease punctuated by acute exacerbations often
requiring hospitalization. During these exacerbations, life-
prolonging treatments that also improve symptom burden
(such as diuretics) are administered. Within an integrated
model of medical care, palliative care is provided at the
same time as curative or life-prolonging treatments; how-
ever, the fragmented multi-subspecialty US healthcare
delivery system makes such integration challenging.
The fee-for-service payment model in the United States

also exacerbates this health system fragmentation by paying
only for specific services rather than for the comprehensive
care of the patient. Although there is reimbursement for pal-
liative care physician consultation, there is currently no
reimbursement for non-physician interdisciplinary team
members in the acute care setting. There is also no reim-
bursement for family and goals of care conferences that do
not require the patients’ presence, which is a common occur-
rence when caring for individuals with serious illness. Our
analyses of the CAPC data from more than 400 hospital-
based palliative care programs across the United States
found that the designated palliative care physician, advanced
practice nurse, and RN were primarily funded by the hospi-
tal or health system. Furthermore, although 83% reported
that there was such funding in place for the palliative care
physician, only 73% said there was funding in place for the
advanced practice nurse and only 55% for the RN.
The impact of the fragmented structure of the US
healthcare system is also evident in barriers to greater
access to hospice care. Medicare policies state that to
elect the Medicare hospice benefit, an individual “…
waives the right to receive Medicare covered services for
the terminal illness and related conditions.”53 This crite-
rion creates a difficult dichotomy between pursuing
potentially life-prolonging treatments and pursuing palli-
ative treatments.54–56 A recent national survey of 591 hos-
pices indicated that the majority (78%) had at least one
restrictive enrollment policy resulting in only 39% of hos-
pices enrolling patients receiving chemotherapy, one-half
enrolling patients receiving total parental nutrition, and
two-thirds enrolling patients receiving palliative radia-
tion.54 In addition, what constitutes care in either category
may be interpreted differently by hospices and referring
physicians. For example, some hospices only admit
patients who have stopped all life-sustaining treatment,

including chemotherapy and radiation, whereas other hos-
pices allow some life-sustaining treatments as long as,
even with the treatment, the patient is considered termi-
nal. Furthermore, an increasing number of treatments are
considered both life-prolonging and palliative (such as
diuretic and other therapies for heart failure, chemother-
apy, and radiation therapy), and thus the extent to which
these types of treatments may be continued once the
Medicare Hospice Benefit is elected is unclear. How to
integrate hospice care for people whose treatment plans
include concurrent disease-specific treatments and pallia-
tive care is a consequence of our fragmented system of
healthcare delivery and remains a major hurdle to greater
palliative care integration in the United States.
Lack of adequate reimbursement and incentives for palliative
care for complex patients. Fee-for-service payment remains
the dominant financing model in the US healthcare system,
especially within the Medicare program which finances
Aldridge et al. 233
care for almost all Americans aged 65 years and older. This
payment system provides financial incentives for increas-
ing the volume of care provided to patients rather than the
quality of services delivered.29 Thus, for patients with seri-
ous illness at the end of life, there remains an incentive for
high intensity, high-cost services, including tests, proce-
dures, and hospitalizations.29 This system may even dis-
courage timely referral to hospice. A study57 of more than
286,000 fee-for-service Medicare patients in 2009 found
that although 42% were enrolled in hospice at the time of
their death, 28% were under hospice care for 3 days or less.
In addition, more than 40% of late enrollments in hospice

were preceded by an ICU stay. Incentives (e.g. pay for per-
formance programs) that would reward hospitals for offer-
ing palliative care consultation or early hospice referral for
patients with complex, multiple comorbidity, and end-stage
disease do not exist.
In conjunction with the limitations of a fee-for-service
payment structure, there are significant gaps in the reim-
bursement for palliative care services. For example, there
is no reimbursement for non-physician interdisciplinary
palliative care team members in the acute care setting and
no reimbursable code for family and goals of care confer-
ences with family members when (as it is very often the
case) the patient is too ill to participate. Medicare similarly
does not reimburse interdisciplinary palliative care team
services for nursing home residents unless they are enrolled
in hospice. Moreover, as detailed in a systematic review of
nursing home end-of-life care,30 a range of other nursing
home regulatory and payment policies further impede inte-
grating palliative care services earlier in caring for nursing
home residents with advanced illness. In particular,
Medicare generally places higher priority on rehabilitative
care (e.g. over end-of-life care) in the way it reimburses
services, in the way it defines and assesses nursing home
quality of care, and even in the way it defines service eli-
gibility standards.30 Although there is significant ongoing
debate within the United States regarding the fee-for-
service payment system, it is the model that will likely
continue at least in the short term to dominate in the United
States,58 and thus reform efforts to increase access to inte-
grated palliative care must be created to work within this
framework, not only in the community but also in other
settings of care.
Need for greater funding for palliative care research. In the
United States, federal funding through the National Insti-

tutes of Health (NIH), the Veteran’s Administration, and
the Agency for Healthcare Research and Quality (AHRQ)
is inadequate and is a significant barrier to greater integra-
tion of palliative care.34 A recent study reported that from
2006 to 2010, grants related to palliative care research
comprised 0.2% of total grants awarded by the NIH.59 Fur-
thermore, only three agencies—the National Cancer Insti-
tute (0.4% of all NCI awarded grants), the National
Institute for Nursing Research (7.6% of all NINR awarded
grants), and the National Institute on Aging (0.8% of all
NIA awarded grants)—funded 82% of all palliative care
research awards.59 The same study found that of the 1253
original research papers published in palliative care from
2006 to 2010, only one-fifth were supported by federal
research dollars.59
There are a number of reasons for this limited invest-
ment in palliative care research. First, there is no federal
agency specifically charged with a focus on palliative care
and on persons with serious illness. The NIH institutes are
largely disease-specific, and thus palliative care, with its
applicability to all serious illnesses, does not fit well within
a particular institute’s scope. Second, recent budget cuts
have further hampered the ability of the NIH to fund new
research or new investigators that might be perceived as
outside of their core missions. Third, there is no study sec-
tion that specifically focuses on palliative care, and exist-
ing study sections tend to have a maximum of only one to
two reviewers with expertise in palliative care research.
Study section representation is critical as peers with appro-
priate content and methodological expertise in palliative
care rarely review palliative care grant submissions, reduc-
ing their likelihood of being funded.34
Regulatory barriers to greater palliative care integration in the

nursing home setting. Our literature review identified nurs-
ing home setting as the one in which significant policy-
related barriers to palliative care expansion exist. The
goals of palliative care address critical issues for individu-
als with complex and serious illness residing in nursing
homes, including pain and symptom management, com-
munication, preparation for death, decisions about treat-
ment preferences, and caregiver support. Because of the
uncertain prognosis associated with chronic nonmalignant
diseases such as dementia, many nursing home residents
are either not referred to hospice or have very short hos-
pice stays. The integration of palliative care into nursing
homes offers a potential solution to the challenges relating
to hospice eligibility, staffing, training, and obtaining ade-
quate reimbursement for care that aligns with resident and
surrogate’s preferences and needs. However, the delivery
of palliative care in nursing homes in the United States is
hindered by policy issues related to both regulatory and
staffing barriers and, as a result, is rare.22,30,44,60
A recent review article22 drew on interviews with nurs-
ing home executives, practitioners, and researchers to
describe the regulatory and staffing-related barriers to
nursing home palliative care. This study found that a major
regulatory barrier to delivering palliative care in the nurs-
ing home is the misperception that palliative care is incom-
patible with the restorative focus of nursing home
reimbursement and regulation. This is demonstrated by the
fact that the prospective reimbursement categories that
must be used by nursing homes, called Resource Utilization
Groups, do not include palliative care. Resource Utilization

Groups for intensive rehabilitation or skilled care (e.g.
intravenous medications and tube feeding) are far more
generously reimbursed than personal care, symptom man-
agement, and emotional and spiritual support, creating a
direct financial incentive for artificial nutrition and hydra-
tion and intravenous therapies even among the very debili-
tated and dying.
Options to expand integrated
palliative care in the United States
Shift to value-based purchasing and
reimbursement
Mounting evidence that palliative care improves quality,
prevents crises and avoidable hospitalizations, and
reduces healthcare costs for patients with serious illness
and their families represents an opportunity for palliative
care program growth. In 2013, the United States spent
US$2.9 trillion on healthcare costs61 and projections sug-
gest that by 2040, 1 out of every US$3 spent in the United
States will be spent on healthcare.62 Healthcare spending
is highly concentrated among a small seriously ill popula-
tion, whereby 5% of patients account for 50% of total
healthcare costs.63 This population is characterized by
both chronic conditions and functional limitations and is
thus likely appropriate for integrated palliative care.
Expansion of palliative care offers an unrivaled opportu-
nity to increase the value (i.e. better quality leads to lower
costs) of healthcare.
There is an increasing body of research demonstrating
that inpatient palliative care lowers costs by preventing
symptom crises and matching treatments to patient goals
thereby reducing misutilization. A recent review of 46 stud-
ies evaluating the impact of palliative care interventions on

cost or healthcare utilization found that despite wide varia-
tion in study type, characteristic, and study quality, pallia-
tive care was found to be less costly relative to comparator
groups, and in most cases, the difference in cost was statis-
tically significant.64 For example, one study estimated the
financial impact of palliative care across eight hospitals in
six states to assess its potential cost savings in a hospital
setting.16 Palliative care patients discharged alive had net
savings of US$1696 in direct costs per admission and
US$279 per day, and those who died in the hospital had
adjusted net savings of US$4908 in direct costs per admis-
sion and US$374 per day.16 Two studies analyzing the
impact of palliative care consultations in the hospital on
costs for veterans hospitalized with advanced disease found
average savings of US$464 in direct costs per day65 and
US$239 in direct costs per day.66 Cost savings in a sample
of 3605 patients hospitalized in two academic medical
centers were estimated to be US$2141 per admission for
those with stays of 1 week or less, US$2870 in savings for
those with stays of 1 week to 1 month, and no cost savings
for those with stays of more than 1 month.67 Focusing on
the Medicaid population in a single state (New York),
another study attributed an average savings of US$4098 in
hospital costs per palliative care consult for patients dis-
charged alive and a savings of US$7563 for patients who
died in the hospital.15 A more recent study evaluating the
impact of hospital-based palliative care consultation on
direct costs found savings of US$3426 per inpatient stay
for those who died in the hospital although no cost savings
for those discharged from the hospital alive.68
A smaller group of studies have also demonstrated
reduced costs associated with outpatient palliative care
across the entire course of illness, as summarized in a recent
review article.69 For example, a randomized control trial of

outpatient palliative care in addition to usual care among
151 patients newly diagnosed with stage IV non-small cell
lung cancer found that those in the palliative care interven-
tion group were less likely to have depressive symptoms,
had improved survival (a gain of almost 3 months), and
lower rates of ED visits and hospital admissions. Palliative
care was also associated with less aggressive end-of-life
care including less chemotherapy within the last 14 days
and earlier referral to hospice—measures indicative of
higher quality and lower costs.70 Similarly, a randomized
control trial of home-based palliative care for 298 home-
bound, terminally ill patients demonstrated improved satis-
faction, fewer hospital days and ED visits, and lower costs
(mean reduction of US$7552 per capita, in 2002 dollars).71
A randomized control trial of palliative care consultation in
a primary care clinic setting resulted in fewer primary care
and urgent care visits, yet no difference in use of the ED
and hospital.72 Finally, a recent observational study of 686
decedents found cost savings associated with a home-based
palliative care program of US$3908 per patient per month
during the last 3 months of life and US$7172 per patient per
month in the last 2 weeks of life.73
The combination of fiscal pressures and mounting evi-
dence supporting palliative care’s ability to reduce costs
has led to greater investment in palliative care programs by
private insurers. Medicare and Medicaid are increasingly
privatized, with some states already exceeding 40% pene-
tration of Medicare Advantage plans.74 The Congressional
Budget Office estimates that an additional 38%, totaling
22 million beneficiaries, will enroll in Medicare Advantage
plans by 2020. These managed care plans are rapidly
building and expanding palliative care programs as a
means of achieving better value. The private insurer’s
capacity to integrate palliative care to a level that the gov-
ernment could not do represents an important opportunity

for the growth of integrated palliative care programs in the
United States.
Greater investment in palliative care research
Our review of the literature on barriers to palliative care
expansion in the United States underscores the need for
Aldridge et al. 235
increased funding for palliative care research and investi-
gators. Building the evidence base for the impact of pallia-
tive care on both quality of care and healthcare costs is
crucial to its expansion across settings and is dependent
upon funding from at the federal level. Funding mecha-
nisms for palliative care research should be developed in
all NIH institutes, the AHRQ, as well as in the Veterans
Administration. Specific policy initiatives regarding palli-
ative care research investment could be integrated within
the current biomedical research funding structures and
include the following:34
•• NIH/AHRQ should allocate 2% of their current budg-
ets to focus on the needs of patients with serious ill-
ness and their families, and developing and evaluating
new models of care delivery, symptom relief, and
communication and research focused on the impact of
concurrent palliative care along with disease-directed
therapies for patients with serious illness.34
•• Development of a Center for Scientific Review
study section that specifically focuses on serious ill-
ness and moves beyond disease and biology-spe-
cific topic areas.34

•• NIH should establish an Office of Palliative Care
Research modeled after the Office of AIDS
Research to oversee and ensure appropriate distri-
bution of research funding. This is particularly
important given that the priorities for palliative care
research cross multiple diseases and conditions and
are not well matched by the current disease-specific
silos of NIH.34
•• NIH, AHRQ, and Patient-Centered Outcomes
Research Institute need to develop specific Program
Announcements and Request for Applications tar-
geted to the research priorities in palliative care.34
•• Existing NIH career development award mecha-
nisms should be utilized to support junior investiga-
tors and midcareer palliative care investigators in
order to build a critical mass of established pallia-
tive care researchers.34
Expansion of the palliative medicine–trained
workforce
To address the significant workforce-related barriers iden-
tified in this report, a multipronged approach to training
professionals in palliative medicine is required to ensure
that Americans with serious illness and their families have
access to quality palliative care. First, palliative medicine
is the fastest growing medical subspecialty in the United
States, and thus expansion and support of fellowship pro-
grams is needed. Second, a substantial number of midca-
reer physicians are seeking training in order to transition
from their current field of practice into palliative medicine,
and supporting these individuals is crucial to address the

workforce shortage in palliative medicine. Third, all phy-
sicians who care for patients with serious illness should be
trained in the core principles of palliative medicine to
ensure that they know how to communicate with seriously
ill patients and treat pain and other distressing symptoms.
Several policy initiatives are likely to have a major impact
on increasing the current number of palliative care clini-
cians, including proposals to the following:
•• Lift the Graduate Medical Education cap on
Medicare-funded residency positions and redistrib-
ute unused Graduate Medical Education slots to
support ACGME-approved palliative medicine fel-
lowship training.
•• Establish loan-forgiveness programs for palliative
care physicians and nurses through the Health
Resources and Services Administration to promote
palliative care as a viable career path for young
healthcare professionals.
•• Create Health Resources and Services Adminis-
tration Title VII–supported career development
awards (similar to Geriatric Health Professions
Training Programs) to support clinician-educators
who can integrate palliative care into medical, nurs-
ing school, and postgraduate training curricula.
•• Establish Health Resources and Services
Administration awards to support retraining of mid-
career current medical and nursing workforce for
this new specialty.
•• Require Continuing Medical Education training for
referring physicians as a condition of licensure at
the state level—similar to California’s provision for

pain management training—that would ensure phy-
sician’s competency in the core principles and prac-
tice of palliative medicine.
Establishment of guidelines to “trigger”
palliative care consultation
To address the need to more easily identify patients appro-
priate for palliative care referral, a 2011 consensus state-
ment from the CAPC proposed criteria for identifying
patients in need of palliative care assessment in the hospi-
tal setting.75 The palliative care needs of patients meeting
one or more of these criteria should be addressed by their
primary medical team, with consultation by palliative care
specialists to assist with time-intensive complex decision-
making regarding goals of care and treatment options; to
make recommendations regarding pain and symptom man-
agement; and to help address complicated psychosocial,
spiritual, and social issues.
While criteria for palliative care assessments are not
available for patients in the outpatient setting, the primary
care clinician should consider consultation to a palliative
care specialist team for patients who have poorly controlled
symptoms, frequent visits to the emergency room, one or
more hospital admissions in 30 days, a prolonged hospitali-
zation, and/or a prolonged ICU stay. An affirmative answer
by the primary care clinician to the consideration (or “sur-
prise question”): “Would you not be surprised if the patient
died within 12 months, or did not live to adulthood” might

Table 3. Options for advancing integrated palliative care in the
United States.
Stakeholder category Actions
Quality improvement
organizations
1. Identify and measure access to palliative care and hospice
services as a key marker of quality across all settings.
2. Encourage adherence to National Quality Forum–preferred
practices and certificate criteria as a means of
ensuring quality and standardizing program operations across
the country.
Accreditation and
certification organizations
1. Promote palliative care certificate program to hospitals, home
care, and long-term care settings.
2. Exempt ACGME-approved palliative medicine fellowship
training from the graduate medical education funding
cap.
3. Establish and promote standards for medical practice in a
broad range of specialties for ABMS’s new subspecialty
certification in hospice and palliative medicine.
4. Develop measures of institutional capacity for high-quality
palliative care services.
5. Develop composite measure of symptoms assessment (pain,
dyspnea, constipation, health-related quality of life)
that is harmonized across all settings.

Healthcare purchasers and
businesses
1. Require the presence of a quality palliative care and hospice
program as a condition of preferred provider status.
2. Sponsor and encourage demonstration projects that support
concurrent palliative care in hospital and home
settings, including provision for collaboration with hospice
providers.
Healthcare payers Payment for services
1. Reimburse for non-physician interdisciplinary team members
in the acute care setting.
2. Develop appropriate compensation by Medicare and private
insurance to ensure provision of time-intensive,
expert palliative care of complex, and seriously ill patients.
3. Develop a reimbursable code for family and goals of care
conferences that do not require the patient’s presence.
4. Provide pay-for-performance programs that reward hospitals
offering palliative care consultation and/or hospice
referral for patients with complex, multiple comorbidities, and
end-stage disease.
5. Require access to quality palliative care and hospice
programs as a condition of participation or licensure.
6. Include palliative care and hospice as essential insurance
benefits and educate consumers to select plans covering
palliative care and hospice.
Payment for education
7. Offer medical school loan forgiveness for physicians and
advance practice nurses who seek subspecialty training

in palliative medicine.
8. Increase graduate medical education payments and hospital
budgets for palliative medicine training programs for
accredited palliative medicine fellowship programs.
Health professional
organizations
1. Develop a reimbursable code for family conferences that does
not require the patient’s presence.
2. Develop a CPT code for palliative care associated with the
time intensity, team approach, and complexity of
palliative care service delivery.
3. Improve access to education and certification opportunities
for physicians, nurses, chaplains, and social workers.
4. Include prognosis, communication, and symptom
management competencies for serious illnesses as a routine
part of undergraduate, graduate medical and nursing training,
and continuing medical and nursing education.
Consumer organizations 1. Increase consumer awareness,
education, and access to palliative care and hospice program
information through
consumer articles and linking organizational websites to
palliative care website (e.g. getpalliatvecare.org)
Research and workforce
organizations
1. Increase funding for palliative care and hospice research to
2% of the total NIH-AHRQ budget.
2. Offer palliative care and hospice research fellowships and
career development awards annually.

3. Establish an NIH-AHRQ palliative care and hospice study
section for quality peer review.
4. Establish a cross-institute NIH strategy to increase research
funding in palliative care and hospice, as called for by
the US Senate Appropriations Committee report for the
Department of Labor, Health, and Human Services, and
Education for fiscal year 2011.
5. Conduct a study of workforce trends, training capacity, and
needs for hospice and palliative care workforce for
the nation’s medical centers, hospices, and outpatient and long-
term care settings, as called for by the US Senate
Appropriations Committee report for the Department of Labor,
Health, and Human Services, and Education for
fiscal year 2011.
ACGME: Accreditation Council for Graduate Medical
Education; ABMS: American Board of Medical Specialties;
CPT: Current Procedural
Terminology; NIH: National Institutes of Health; AHRQ:
Agency for Healthcare Research and Quality.
Source: Meier.7
Aldridge et al. 237
also guide the identification of patients who would benefit
from a palliative care assessment.
Similarly, there is a need to develop and test a tool to
identify patients with chronic conditions in need of pallia-
tive care in the general population. Efforts to do this are
already underway. A recent population-based study76 in
Spain aimed to determine, by direct measurement, the

prevalence of people in need of palliative care among a
sample of advanced chronically ill patients. They found
that based on clinician’s responses to the surprise question
and other indicators, 1.5% of study population were in
need of pal-liative care demonstrating that direct measure-
ment of prevalence of palliative care needs on a population
basis is feasible. Early identification and prevalence deter-
mination of these patients is likely to be the cornerstone of
palliative care public health policies.
In summary, there are numerous opportunities to
increase access to integrated palliative care in the United
States and options to do so exist for multiple stakeholders
within the healthcare system. Table 3 summarizes some of
the most pertinent options in the United States for increas-
ing the penetration of integrated palliative care.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
This work was conducted on behalf of the InSup-C project on
patient-centered integrated palliative care. An EU Framework 7
Programme (FP7/2007-2013).
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