280 Seminars in Oncology Nursing, Vol 30, No 4 (November), 2014: pp 280-286

PALLIATIVE
CARE COMMUNICATION
ELAINE WITTENBERG-LYLES, JOY GOLDSMITH, AND CHRISTINE SMALL PLATT

OBJECTIVES: To summarize the challenges of teaching, practicing, and

learning palliative care communication and offer resources for improving
skills and educating others.
DATA SOURCES: A theoretically grounded, evidence-based communication
curriculum called COMFORT (Communication, Orientation and
opportunity, Mindful presence, Family, Openings, Relating, and Team).
CONCLUSION: The COMFORT curriculum is available for free through a Web
site, a smartphone/iPad application, and online for continuing education units.
IMPLICATIONS FOR NURSING PRACTICE: The COMFORT curriculum provides
resources to support the expansion and inclusion of palliative care practice
not only in oncology, but also in a wide variety of disease contexts.
KEY WORDS: Palliative care, communication, communication education,
nurse communication

I
NTEGRATING palliative care into oncology
requires sensitive communication about
diagnosis, discussing factors influencing
treatment decision-making (employment,
financial, familial), relaying and mediating
communication among family members, and psy-
chosocial counseling about difficult topics. A series
of randomized controlled trials have recently
demonstrated the benefits of palliative care in pa-
Elaine Wittenberg-Lyles, PhD: Division of Nursing
Research and Education, City of Hope, Duarte, CA.
Joy Goldsmith, PhD: Department of Communication,
University of Memphis, Memphis, TN. Christine Small
Platt, MBA: Department of Communication, University
of Memphis, Memphis, TN.
Address correspondence to Elaine Wittenberg-Lyles,
PhD, Division of Nursing Research and Education,
City of Hope, 1500 E. Duarte Road, Pop Sci Bldg 173,
Duarte, CA 91010. e-mail: elyles@coh.org
Ó 2014 Elsevier Inc. All rights reserved.
0749-2081/3004-$36.00/0.
http://dx.doi.org/10.1016/j.soncn.2014.08.010
tients with advanced cancer integrated into stan-
dard oncology care.1 Language is critical to
facilitating access to services because most
Americans do not understand the term palliative
care,2 making it necessary for providers to be
skilled at defining and describing the scope of palli-
ative services.3 Articulating goals of care is an
essential element of these conversations, so that
this information can be shared with the oncology
team who works with the patient and family to
choose appropriate care plans.4
When appropriate words are used to describe
palliative care, consumers respond positively and
want palliative care services.2 However, few
nurses are prepared for or feel adept at facilitating
discussions about palliative topics and most report
receiving little to no education about palliative
care communication.5 Yet, as our population con-
tinues to age and the number of individuals with
life-limiting illness increases, it is necessary for
all clinicians to be able to approach patients and
families about the services and benefits of

palliative care. This article presents an overview of
the challenges of teaching, practicing, and
learning palliative care communication, and offers
resources, tools, and training programs for
improving individual skills and educating others.
The experiences of a pediatric oncology nurse,
Jeremy, are used to feature moments in the prac-
ticing life of a nurse and the communication
training needs encountered. Jeremy’s experiences
depict communication difficulties and demon-
strate the application of specific resources in clin-
ical education and practice.
THE CHALLENGES OF PALLIATIVE CARE
COMMUNICATION
For nurses, palliative care communication can
be challenging for two primary reasons. First,
healthcare systems create complex communica-
tion environments for patient access and delivery
of palliative care. A lack of knowledge about palli-
ative care still exists for some providers,3 making
it necessary for palliative care clinicians to provide
system-level education about the specialty to
establish referral networks.6 This lack of under-
standing is convoluted by the debate over the
name palliative care, with oncologists reporting
palliative care as a distressing term that reduces
hope for patients and families.7 Patient and pro-
vider education is needed to help patients and
families understand palliative care and the scope
of services provided by palliative care teams.2
In addition to these system-level influences on
communication, nurses also face challenges with
palliative care communication topics and complex
clinical situations. Nurses report being uncomfort-
able discussing prognosis, hospice, advanced care
planning, referring a patient to hospice, and telling
a patient that he/she will die from cancer.8-11 In a
national study, 46% of oncology nurses described
that they sometimes, often, or always avoided
talking with patients because they were uncom-
fortable giving bad news.10 Team communication
can also be problematic because of a lack of clearly
defined responsibilities among team members,
reliance on informal channels of communication,
and conflict caused by social circumstances.12
COMMUNICATION AND CLINICAL EDUCATION
Less than 10 years ago, nurses only received one
or two lectures on palliative care as part of their
PALLIATIVE CARE COMMUNICATION 281
nursing program education.13 Today, advances in
curricular development in undergraduate and grad-
uate nursing programs remain negligible.14 Grad-
uate student nurses have limited knowledge about
palliative care15 and there are few interprofessional
learning opportunities for undergraduate and grad-
uate nurses and even less through continuing educa-
tion forums.12,16 Overall, there is a general need for
further education about palliative care in graduate
and undergraduate nursing programs.
While symptom management is consistently re-
ported as a top content area for palliative care ed-
ucation, instruction on communication and how
to communicate with patients and families about
death and dying is also a well-documented
need.15,17 Nurses need and want more education
on communication.10 Nurse communication
training has yielded significant results in the
assessment of immediate outcomes (confidence,
knowledge); however, retention of confidence
and skills has not been successfully demon-
strated.18 The interdisciplinary structure of the
palliative care team also requires nurses to have
exposure to interprofessional education to
develop leadership skills and gain clarity on the
nursing role within a team-based approach to
care.12 Aside from the 1-hour module on commu-
nication in the End-of-Life Nursing Education
Consortium, which is offered as a continuing edu-
cation course and not required by all nurses, most
nurses learn communication skills from on-the-
job training, preceptors, and colleagues.19 Howev-
er, these skills may or may not be evidenced-based
communication strategies that ensure quality pa-
tient and family care or effective team practice.
APPROACH TO COMMUNICATION
The majority of nurse communication training
has been modeled after approaches taken in medi-
cine. Training workshops have included adapted
versions of ONCO-Talk20 or EPEC21 which provide
traditional sender-receiver models of communica-
tion and primarily depict and address the role of the
physician. These programs prioritize information
exchange and ensure receipt of messages.22 In
contrast, the nurse’s communication role is trans-
actional in nature, which means that both nurse
and patient/family simultaneously and recipro-
cally design, deliver, and interpret messages and
create meaning together.23 In this transactional
model of communication, information is not
282 E. WITTENBERG-LYLES, J. GOLDSMITH, AND C.S. PLATT

deposited and then assessed for receipt; rather, it is

created through the interaction with an emphasis
on task communication (accomplishing the
relaying of information) alongside relational
communication (conveying nonverbal communi-
cation). This approach is predicated upon the
axiom that people communicate all the time,
regardless of whether or not they intend to commu-
nicate, and that every message (verbal or
nonverbal) conveys both content (verbal message)
and relationship (nonverbal communication).24
Based on this approach to communication, the au-
thors created an innovative curriculum called
COMFORT and a series of ancillary resources.
These resources are identified and described here.

COMFORT COMMUNICATION CURRICULUM

The COMFORT communication curriculum is a
theoretically grounded curriculum for teaching
palliative care communication.23,25,26 COMFORT
is an acronym that stands for C-Communication,
O-Orientation and opportunity, M-Mindful pres-
ence, F-Family, O-Openings, R-Relating, and
T-Team and is detailed in a volume on communica-
tion in palliative nursing.23 Narrative communica-
tion is introduced as a communication technique
to draw out patient/family stories, use the informa- FIGURE 1. Health communication: building professional
tion as a guide in care planning, and provide skills (iOS App).
person-centered messages in difficult communica-
tion situations. The use of nonverbal communica-
resources are readily available without cost or
tion is also highlighted to emphasize relational
membership.
communication strategies. The curriculum is not a
linear guide, an algorithm, a protocol, or a rubric
for sequential implementation by clinicians, but TEACHING PALLIATIVE CARE COMMUNICATION
rather a set of holistic principles that are practiced
concurrently and reflectively during patient/family ‘‘Gloria, a nurse faculty member, was assigned
care. This patient-centered approach emphasizes to teach a new course called Trends in Nursing in
the collaborative, reciprocal nature of clinician- the undergraduate nursing program at her col-
patient-family interactions as participants relation- lege. Within the BSN curriculum, the course ex-
ally create and adapt to shared meaning. COMFORT plores the legal and ethical relationships in
has been shown to improve clinician self-efficacy, nursing, palliative and end of life care, the eco-
attitudes toward communication, and reduce nomics of dying, and interpersonal relationships
communication apprehension.27,28 among healthcare professionals, families, and pa-
A key goal in the development of the COMFORT tients. Gloria’s own clinical practice in oncology
curriculum was to disseminate resources and ma- and palliative care was extensive. However, she
terials for teaching, practicing, and learning pallia- had never built a course on these topics and
tive care communication. Specific projects was searching for teaching materials in one loca-
include establishing a Web site to house all curric- tion to support the course objectives. A senior
ular materials, an iOS smartphone/iPad applica- faculty member directed Gloria to a new Web
tion (app) with communication strategies (see site, the Clinical Communication Collaborative
Fig. 1), and expanding the curriculum availability (www.clinicalcc.com). Here she found developed
to online continuing education platforms. These modules, instruction manuals with a variety of

teaching resources, power points, and directly
related research articles. Gloria integrated these
resources along with competency topics for the
class. As the course unfolded, a second-career
nursing student, Jeremy, found himself parti-
cularly drawn to palliative care as an area of
clinical practice. He met many times with Gloria
as he began to identify the essential role of pallia-
tive care in the field of pediatric oncology which
he hoped to enter upon graduation.’’
The acceptance of palliative care as a specialty
presents a new demand as well as an opportunity
for nurse educators. The challenge for many clin-
ical educators in nursing is integrating palliative
care content along with content specific to serious
and life-threatening cancers.29 The majority of
palliative care patients are referred from oncology,
thus nurse educators are challenged to effectively
join these two disciplines. With few resources
available and the demand to disseminate content
high, Gloria and other nurse faculty in the US
are still limited in the availability of resources.
To disseminate curriculum for faculty, the Clin-
ical Communication Collaborative (CCC) Web
site was launched in October 2012. The CCC is a
resource Web site that houses clinical communi-
cation tools for healthcare professionals. The
goal is to support clinicians and educators through
communication training, education, and research
in order to meet the changing demands of health-
care systems and address patient/family needs in
the context of cancer and other serious illnesses.
The National Consensus Project for Quality Pallia-
tive Care guidelines articulate how vital palliative
care communication and delivery is to all aspects
of oncology care. The formation and distribution
of a curriculum and ancillary resources featuring
communication in the practice of palliative care
enables the work of faculty training the next gen-
eration of clinicians. Uniquely, CCC intentionally
places COMFORT at the center of the curriculum.
Resources featuring the COMFORT communica-
tion curriculum have been tested, peer-reviewed,
and taught,28,30,31 and are available to educators
on the CCC Web site.
PRACTICING PALLIATIVE CARE COMMUNICATION
‘‘Jeremy graduated and has been working on a
pediatric oncology wing of a comprehensive
cancer center. The Wu family from Lijiang China
arrived to pursue care for their child Anli. At age
7 she had been diagnosed with brain stem glioma
PALLIATIVE CARE COMMUNICATION 283
and Jeremy became Anli’s nurse. She declined
rapidly and within days of their arrival lost the
ability to walk. The family brought with them
traditional healing herbs essential to the beliefs
and practices for many Chinese citizens. The
smell was strong by Western standards. Almost
immediately, other patients and families noticed,
and nursing staff began to complain. Pressure
from two unit nurses forced the Wu family to
dispose of the precious blend of herbs. A day later,
the family announced that they were planning to
leave the hospital because they were not allowed
to include essential components from their own
culture. Jeremy consulted an app on his smart-
phone and located the cultural differences tab
with suggested communication strategies, and
used the information when he asked the family,
‘‘Can you describe the power of the herbs you
brought with you so we can find a way to incor-
porate them into your care?’’
Culture, team communication, structures of
institutional practice, and interpersonal commu-
nication across cultures are just some of the mov-
ing parts in the Wu family’s distress. The Wu’s
profound need to include their own cultural and
spiritual practices related to the use of healing
herbs was lost to the institution, its clinicians,
and patients and families also receiving care on
the same floor. Eliciting essential information
from a patient and most especially a family is
imperative to ensuring the best comfort possible.
Palliative care delivered in the context of
advanced cancer demands attention to psychoso-
cial and spiritual aspects of dying. Palliative care
communication must engage patients (and fam-
ilies) in shared decision-making and include
honesty, inquiry, repetition, and empathy.4
Jeremy’s attempt to build a bridge to the Wu’s after
conflict had escalated represents a clear effort to
preserve quality care for this family.
Pediatric oncology presents unique and com-
plex demands for parents who are confronted
with the demand of decision-making and its pro-
found implications and burdens.32 Like the Wu’s
need to integrate their own cultural practices for
spiritual support, nursing communication strate-
gies meant to achieve palliative goals are vital to
reducing family suffering. Advance care planning
is also a neglected topic by nurses who lack expe-
rience, education, and time to address this impor-
tant communication task.33 Not unlike the Wu’s,
barriers to culture, health literacy, and the life
world of the patient/family are destructive to the
284 E. WITTENBERG-LYLES, J. GOLDSMITH, AND C.S. PLATT
trust shared between a nurse and patient/family.
Nurses need a range of resources to manage the
ongoing challenge of communicating respect and
compassion to alleviate the cross-cultural burdens
in terminal illness.
Health Communication
Building Professional Skills is a smartphone or
iPad app that presents free, easily accessed
prompts to help nurses engage palliative care
communication practices (Fig. 1). Built from the
COMFORT curriculum housed on the CCC Web
site, The ‘Communication Toolkit’ and ‘Difficult
Scenarios’ provide over 100 practical skills in
just seconds—for nurses like Jeremy who need im-
mediate access to support for challenging commu-
nication situations (Table 1). The toolkit feature of
the app identifies communication topics for spe-
cific nurse needs, such as dealing with family care-
givers, health literacy tools, and responding to
hard questions. Likewise, a separate component
of the app addresses difficult scenarios and pro-
vides instruction on what to observe, what to
ask, and how to respond based on the context.
More than 700 healthcare professionals have
downloaded the app since its release in September
2013, primarily within the United States as well as
the United Kingdom, Canada, and Australia.
LEARNING PALLIATIVE CARE COMMUNICATION
While a core tenet of palliative care is that it is
interdisciplinary, courses and other educational
programs for team practice and communication
are rare,16 Jeremy needed resources to improve
TABLE 1.
Health Communication: Building Professional Skills
(iOS App)
Download Find Free App from iTunes Store
Navigate Select communication challenges you are
facing
Identify communication tools to employ in your
context
View See short video support from CCC faculty
about challenges in clinical communication
Engage Communicate with patients, families, teams
using the support and practical suggestions
from the Health Communication App
Respond Share your feedback and suggestions with us
using our brief pop-up survey
his situation, but had limits on his time in light
of his full work schedule. Given that continuing
education is valued among hospice and palliative
care nurses,17 and self-directed learning packages
have been successfully implemented,18 Web-
based and online platforms for instruction may
be viable options for providing palliative care
communication education. E-learning and work-
place distance learning have been proffered as
feasible educational approaches to meet educa-
tional needs in palliative care.14
To meet the growing demand for interprofes-
sional education and resources, two versions of
the COMFORT modules were created for
continuing education and made available at no
cost. Through CECentral, offered through Univer-
sity of Kentucky Healthcare (www.cecentral.com/
comfort), four COMFORT modules were made
available (communication, orientation and oppor-
tunity, family, and team). Each module consists of
a video introduction, brief didactic overview of
communication concepts, analysis of recorded
real-time interactions among hospice team mem-
bers, and debriefing of exemplary and missed
communication strategies. COMFORT delivery in
online modules has been an effective online
curricular tool in teaching a variety of disciplines
specific palliative care communication strate-
gies.31 After a peer-review process facilitated
through the Association of American Medical Col-
leges, the COMFORT curriculum was selected as
an Interprofessional Education Collaborative
resource. The curriculum was revised and shaped
for interprofessional learners, and the MedEd por-
tal Web site continues to provide COMFORT
print materials including teaching instructions
(www.mededportal.org/publication/9298).
RESEARCH IMPLICATIONS AND FUTURE NEEDS
In addition to structural and health policy
changes, increased training of palliative care
nurses and oncologists will be critical to meet
the growing demand for high-quality palliative
care and to meet the vision set by the American
Society of Clinical Oncology (ASCO) for full inte-
gration of palliative care by 2020.1 Full integration
of palliative care will be highly dependent on the
nurse’s ability to provide early and ongoing assess-
ment of patient and family palliative care needs,
requiring flexible and fluid communication that
includes the ability to interpret medical jargon,

procedures, treatment, manage conflict between
family members, and convey support in decision-
making about oncology care. Multiple education
modalities are needed to reach nurses across a va-
riety of care settings and bridge geographic bar-
riers and financial constraints present in the
majority of healthcare systems today.
The teaching of palliative care communication
will be important to easing student concerns,
fears, and trepidation about palliative care con-
texts–a necessary component of encouraging stu-
dents to focus on a career, commitment, and
understanding of palliative care. To accomplish
this, educators need curriculum that incorporates
building communication skills into palliative care
coursework. The short- and long-term goals of the
Clinical Communication Collaborative are de-
signed to lay the foundational communication
framework to support curriculum development.
Retaining professional palliative care staff also
continues to be challenging, often leading to
high staff turnover.2 Future work is needed to
develop curriculum that also addresses the self-
care needs of palliative care staff to aid in reten-
tion efforts.
The current practice of palliative care commu-
nication requires staff to focus on barriers to
patient-centered communication and serve in a
reactive rather than proactive role. As palliative
care programs become more established, future
work will need to focus on the delivery process
of care and how these processes influence commu-
nication with patients and families. Communica-
tion barriers, such as the one Jeremy
experienced with the Wu family, often have
more to do with reactive decisions rather than
proactive decision-making. Implementing pro-
cesses of care that incorporate patient/family
communication to determine care concerns and
needs at the beginning of care will serve as better
models of palliative care and potentially defray
costs associated with communication conflicts.
Patient and family education, a cornerstone of
palliative care communication, should be devel-
oped so that communication practices meet
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PALLIATIVE CARE COMMUNICATION 285
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