JOURNAL OF PALLIATIVE MEDICINE

Volume 8, Supplement 1, 2005

© Mary Ann Liebert, Inc.

Interventions to Enhance Communication among

Patients, Providers, and Families

JAMES A. TULSKY, M.D.

ABSTRACT

Whether patient suffering is caused by physical symptoms, unwanted medical intervention,

or spiritual crisis, the common pathway to relief is through a provider who is able to elicit
these concerns and is equipped to help the patient and family address them. This paper re-
views the current state of knowledge in communication at the end of life, organized accord-
ing to a framework of information gathering, information giving, and relationship building;
and then focuses on interventions to enhance communication among patients, providers, and
families.
Several observations emerge from the existing literature. Patients have highly individual-
ized desires for information and we cannot predict patient preferences. Communication cod-
ing methodology has advanced significantly yet the current systems remain poorly under-
stood and largely inaccessible. Physicians and other health care providers do not discuss
sufficiently treatment options, quality of life or respond to emotional cues from patients, and
there is plenty of room for improvement. On the positive side, we have also learned that
physicians and other health care providers can be taught to communicate better through in-
tensive communication courses, and that communication interventions can improve some pa-
tient outcomes. Finally, huge gaps remain in our current knowledge, particularly with regard
to understanding the relationship between communication style and outcomes.
These findings suggest several recommendations. We should create larger and more diverse
datasets; improve upon the analysis of recorded communication data; increase our knowledge
about patient preferences for information; establish a stronger link between specific com-
munication behaviors and outcomes; and identify more efficient ways to teach providers com-
munication skills.

“good death” differently1;
E VERYONE DEFINES A
and whether patient suffering is caused by
physical symptoms, unwanted medical interven-
tion, or spiritual crisis, the common pathway to
relief is through a provider who is able to elicit
these concerns and is equipped to help the pa-
tient and family address them. Good communi-
cation enables providers to uncover patient and
family needs at the end of life and to negotiate
individually the goals of care.
Communication success and failure appears to
generate more gratitude and complaints than any
other aspect of the work performed by health care
professionals,2 and poor communication has been
identified as a primary source of malpractice
suits.3–5 Within the field of palliative care, con-

Center for Palliative Care and the Department of Medicine, Duke University, Durham, North Carolina, and the
Veterans Affairs Medical Center, Durham, North Carolina.

S-95
S-96
sultations are commonly requested for assistance
with communication, including establishing
goals of care and delivering prognostic informa-
tion.6 Patients and families regularly cite com-
munication skills as an essential component of
end-of-life care.1 A number of cross-sectional and
retrospective studies infer a relationship between
the quality of communication and patient-cen-
tered outcomes; and, anecdotally, most observers
recognize that how clinicians talk to patients
clearly makes a difference in the quality of their
care. Yet, constructing studies to demonstrate
firmly this relationship has met many challenges.
In particular, only a handful of randomized, con-
trolled trials have attempted to study the effect
of communication interventions on distal out-
come measures such as mortality or quality of life.
Although the quality of communication is gener-
ally recognized as critically important to the clin-
ical encounter, the data supporting its effects,
both positive and negative, are slim. Thus, sig-
nificant opportunities exist for scientific investi-
gation in this area.
Communication research has progressed si-
multaneously on several fronts—discerning what
elements of communication are preferred by pa-
tients and contribute most to their well-being, ob-
serving provider communication behaviors and
assessing their skill, and evaluating interventions
to improve communication. Ideally, such re-
search would involve a sequential series of stud-
ies, with new interventions developed and tested
based upon firm evidence previously derived. In-
stead, because of the paucity of data and the per-
ceived need for rapid change, many interventions
have been created based primarily on conceptual,
rather than empirical, models of ideal communi-
cation.
These conceptual models tend to coalesce
around several goals identified in survey re-
search. According to one recent study of dying
patients, family members and health care
providers these goals include: talking with pa-
tients in an honest and straightforward way, be-
ing willing to talk about dying, giving bad news
sensitively, listening to patients, encouraging
questions, and being receptive to when patients
are ready to talk about death.7 Patients wish for
their providers to achieve a balance between be-
ing honest and straightforward and not discour-
aging hope. Another study found that although
patients must receive adequate information to
make informed choices, they wish to receive that
TULSKY
information in an emotionally supportive way.8
Patients want to discuss emotional concerns, but
frequently are unwilling to bring them up spon-
taneously and may need to be prompted.9
These findings suggest that communication
with patients at the end of life that should be in-
formative, patient-centered rather than physi-
cian-centered,10 and attentive to patients’ emo-
tional needs. More specific models of
communication have been proposed, particularly
for tasks such as delivering bad news,11–16 dis-
cussing disease progression and end-of-life deci-
sions,17,18 and discussing palliative care.19 Al-
though an overarching theory of communication
at the end of life has not been proposed, the most
commonly advocated approaches borrow from
models of patient-centered communication, in-
formed consent, and Rogerian notions of uncon-
ditional positive regard. Studies of communica-
tion behavior tend to compare current practice
with idealized behaviors according to these the-
oretical models, and most teaching interventions
have been developed to train providers to use
more of these behaviors.
This paper will briefly review the current state
of knowledge in communication at the end of life,
organized according to a commonly used frame-
work in which provider–patient communication
is described as consisting of three inter-related
tasks: (1) information gathering, (2) information-
giving, and (3) relationship building.20 Each of
these three communication functions has obvious
implications for clinical care. After this review, I
focus discussion on the well-designed evaluation
studies of interventions to enhance communica-
tion among patients, providers, and families.
INFORMATION GATHERING
Information gathering enables clinicians to as-
sess patients’ current health status and needs. It is
the primary communication tool to facilitate diag-
nosis and treatment. Studies looking at informa-
tion gathering document that both physicians and
nurses, even in hospice settings, tend to underes-
timate, and commonly do not elicit, the full range
of concerns of terminally ill patients.21 Rather than
using facilitative communication techniques such
as open-ended questions or empathic responses,
they often block discussion of psychosocial issues
by changing the subject or ignoring patients’ emo-
tional states.22–24 As a result, patients tend not to
COMMUNICATION AMONG PATIENTS, PROVIDERS, AND FAMILIES
disclose the majority of their concerns, which leads
to inaccurate assessments of patient distress.25 One
large study of terminally ill patients who visited
their oncologists found that physicians dedicated
only 23% of their time discussing health-related
quality-of-life issues, and frequently missed op-
portunities to address issues that seemed to be
most important to patients.26
INFORMATION GIVING
Information giving is the process through
which providers educate patients and families,
and enlist them as partners in their own care. As
with information gathering, shortcomings exist in
information giving. The delivery of bad news of-
ten does not meet patient needs,14,16,27 and dis-
cussions of advance care planning are infrequent
and their quality falls short of expert recommen-
dations.28–30 Just as the notions of a good death
differ among patients, we have also learned that
patients have highly individualized and nuanced
desires for information. In one study, 126 Aus-
tralian cancer patients who were recently diag-
nosed as having incurable disease were asked
about their preferences for prognostic informa-
tion and were also assessed for anxiety and de-
pression.31 More than 95% of these patients
wanted information about side effects, symp-
toms, and treatment options, and 80–85% of them
wanted to hear survival rates. In general they pre-
ferred to hear this information as words, rather
than seeing graphs or charts. Of the patients, 59%
wanted to discuss survival when they first
learned that their disease was metastatic, and 40%
wanted to negotiate the timing of these discus-
sions. There was a lower frequency of depression
among patients who never wanted to discuss ex-
pected survival rates.
In a study by the same group, 118 patients with
incurable cancer visiting nine oncologists were
audio-recorded as they received the news of their
situation.32 Of these patients, 85% were told the
aim of chemotherapy, 75% were told that the dis-
ease was incurable, and 58% discussed life ex-
pectancy. Notably, in this study, more informa-
tion did not increase patient anxiety. However,
patients who were encouraged by physicians to
participate in decision making experienced
greater anxiety.
Is there any way to predict what patients want
to know, or when they are ready to discuss these
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issues? A cross-sectional survey was performed
that included 100 consecutive patients with
chronic obstructive pulmonary disease to assess
their desires to discuss end-of-life care.33 Of these
patients, 85% wished to talk about this topic, yet
only 21% had already had such discussions. Pa-
tients’ preferences for discussing end-of-life is-
sues were not associated with pulmonary status,
medication use, functional status, history of hos-
pitalizations, or even experience with mechanical
ventilation. The authors concluded that disease
severity cannot be used to predict when to talk
to patients.
Similarly, ethnic differences clearly play a role
in communication preferences. For example, pa-
tients of Korean and Mexican background are less
likely to want to hear bad news directly and are
more likely to defer to their families.34 Similar dis-
parities exist in preferences for treatment at the
end of life; for example, African-American pa-
tients are less likely to complete advance di-
rectives and more likely to request aggressive
treatment than their Caucasian and Latino coun-
terparts.35, 36 Nevertheless, one cannot predict
preferences based on ethnic background alone,
and working with a diverse population requires
attention to cultural competence.37
RELATIONSHIP BUILDING
Relationship building encompasses communi-
cation that serves to create an environment in
which patients are more trusting, more adherent
to recommendations, and more likely to have
their emotional needs met. We know that patients
appreciate discussions about end-of-life concerns
and that such communication generally en-
hances, rather than detracts from, the depth of
provider–patient relationships.38, 39 Nevertheless,
numerous studies illustrate that providers do not
attend sufficiently to patient affect in these con-
versations. In an Australian audiotape study of
298 patients with cancer visiting their oncologists,
the encounters were coded for the presence of pa-
tient cues for information or emotional support.40
Investigators found that patients offered a me-
dian of two cues per conversation and that physi-
cians responded to 72% of the informational cues
but only 28% of the emotional cues. Only 11% of
these physicians responded to all of the emotional
cues, yet whether oncologists responded to these
cues had no effect on anxiety or satisfaction. Fi-
S-98
nally, a recent study examined audiotapes of 51
family conferences in the intensive care units of
four hospitals. Investigators examined the pro-
portion of doctor versus family talk time and its
impact on satisfaction.41 The results indicate that
clinicians spoke 71% of the time, but increased
proportion of the conference time spent on fam-
ily talk correlated with increased family satisfac-
tion with the communication. These data confirm
that patient–family–provider communication is
far from ideal, and many of these studies suggest
that patients would benefit if communication
could come closer to its ideal model.
INTERVENTIONS
These data have stimulated a number of inter-
ventions to improve communication at the end of
life. Broadly speaking, one group of interventions
has attempted to improve physician communica-
tion skills directly. A second series of interven-
tions has facilitated the transfer of information
about patient beliefs or preferences to providers,
or directly helped negotiate their relationships.
In the first group, there have been numerous
programs to train physicians and other health care
providers in communication skills. Many have
been delivered in the primary care or hospital-
based setting and are not specifically focused on
communication with patients at the end of life. Al-
though many of the reported examples have been
small, uncontrolled studies, there are several ran-
domized controlled trials of teaching interven-
tions.42, 43 In general, these have demonstrated that
communication skills can be taught, and that the
most effective methods are intensive (at least sev-
eral days in length) and use active learning with
role play and, frequently, standardized patients.
In the setting of patients with life-limiting dis-
ease, short interventions that depend on didactic
teaching have been ineffective. For example, one
course that used lecture, review of a videotape,
and one observed conversation did not dramati-
cally increase the number of advance directive
discussions or completions among an outpatient
population.44 Most of these interventions have
targeted physicians; however, some investigators
have always included nurses in clinician com-
munication programs,45 and there are specific
curricula such as the End-of-Life Nursing Educa-
tion Consortium (ELNEC) aimed at nurses and
other health care professionals.46
TULSKY
In contrast, one recent British trial has shown
the effectiveness of intensive interventions in can-
cer communication. Researchers randomly as-
signed 160 oncologists to receive a 3-day facili-
tated small group communication training,
written feedback, both training and written feed-
back, or no intervention.47 Encounters between
these oncologists and 2407 of their patients were
videotaped before and after the intervention. The
videotapes were rated using Medical Interaction
Process System (MIPS), a coding system that as-
sesses patient-centered communication behav-
iors. Other outcomes included physicians’ psy-
chosocial beliefs and self-perceived competency.
The analysis demonstrated that physicians who
received the communication training were more
likely to use techniques such as open-ended ques-
tions, expressions of empathy, and appropriate
responses to patients’ cues. Intervention physi-
cians’ attitudes and beliefs toward psychosocial
issues also improved,48 and a number of the im-
provements in communication behaviors per-
sisted at 12-month follow-up.49
This study provides fairly conclusive evidence
that physicians can be taught critical communi-
cation skills and subsequently modify their be-
haviors. However, even if such a program could
be replicated and disseminated widely (an orga-
nizational and financial challenge), we still do not
understand what types of communication have
an effect on patient-level outcomes. In this study,
patient satisfaction was not changed among the
intervention physicians.50 In addition to the most
straightforward explanation that the communi-
cation has no impact on satisfaction, there may
be alternative explanations for this finding. Pa-
tients’ satisfaction ratings are often so positively
skewed at baseline (i.e., patients are often highly
satisfied) that it is difficult to produce a mean-
ingful change. Furthermore, the instruments
available to measure satisfaction are not sensitive
enough to detect subtle changes in patient satis-
faction. Other outcomes that were not measured
in this study, such as quality of life, patient mood,
or adherence to therapy, may be more important.
The second group of interventions comprises
those designed to affect directly the communica-
tion process between clinician and patient. The
best known example was the Study to Under-
stand Prognoses and Preferences for Outcomes
and Risks of Treatment (SUPPORT), a multicen-
ter trial in which trained nurses elicited patient
preferences for treatment and provided these, to-
COMMUNICATION AMONG PATIENTS, PROVIDERS, AND FAMILIES
gether with prognostic estimates, to the physi-
cians in an effort to stimulate discussion and de-
cision making.51 The intervention had no impact
on any patient outcomes, including the number
of discussions about end of life. Again, there are
many potential explanations, ranging from the
possibility that patient preferences do not drive
decision making, to the ineffectiveness of nurses
in such a process.
In contrast, Dutch scientists have successfully
increased patient–provider communication about
quality-of-life issues.52 In a prospective, random-
ized, controlled trial involving 214 Dutch patients
and 10 oncologists, patients completed the
EORTC-30, a health-related quality-of-life sur-
vey, before three successive visits. The data from
these visits was then provided in a graphical for-
mat to the patients and their physicians. The en-
counters were audio-recorded and coded for
health-related quality-of-life talk. Investigators
found that health-related quality-of-life issues
were discussed more frequently in the interven-
tion group. Furthermore, the intervention physi-
cians were able to identify more patients with
moderate to severe health-related quality-of-life
problems. Perhaps most importantly, patients in
the intervention group were noted to have im-
proved mental health and role function, presum-
ably because these issues were now addressed.
This was a remarkably simple yet effective inter-
vention.
Others have attempted interventions that ma-
nipulate the communication process even more
directly. In one study, investigators facilitated a
multidisciplinary family meeting within 72 hours
after patients were admitted to a critical care
unit.53 Follow-up meetings assessed progress and
introduced palliative care topics as appropriate.
Patients who died in the intensive care unit used
fewer critical care resources. This reduction in re-
source use was observed 4 years after the inter-
vention was implemented in the unit.54 The im-
pressive results of this trial are mitigated by
weaknesses in its nonrandomized, time-series de-
sign.
A much more strongly designed multi-center,
randomized, controlled trial of ethics consulta-
tion examined the effect of facilitated communi-
cation on outcomes of intensive care unit (ICU)
patients.55 Although the model was ethics con-
sultation, the actual intervention was quite simi-
lar to the service that is provided by palliative
care consultants in such situations. This was a
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prospective, multicenter randomized controlled
trial of ethics consultation compared to usual
care. Seven intensive care units were involved in
the study, and investigators enrolled 551 patients
with value-related treatment conflicts. Outcomes
included the number of ICU days and life-sus-
taining treatments administered to patients who
died, the overall mortality rate, and acceptance of
the ethics consultation by physicians, nurses, pa-
tients, and families. There was no difference in
mortality found between groups (63% vs. 58%).
This finding is important because it addresses the
potential concern that ethics (or palliative care)
consultations might advocate for aggressive
withdrawal of invasive treatments and actually
lead to increased mortality. Compared with the
control group, hospital days (11.62 vs. 8.66; P

0.01) and ICU days (7.86 vs. 6.42; P
0.03) were
significantly reduced, and intervention patients
spent 1.7 fewer days on the ventilator. In all, 87%
of physicians, nurses, patients, and surrogates felt
that the consultations were helpful.
WHAT HAVE WE LEARNED?
One can draw several conclusions from the ex-
isting literature on provider–patient communica-
tion at the end of life. First, patients have highly
individualized desires for information. Assump-
tions about what patients do and do not want to
hear are likely to be wrong. Therefore, at the cur-
rent time, one can only know a patient’s prefer-
ence for information by asking.
Second, communication-coding methodology
has significantly advanced. Many of these stud-
ies depended upon the ability to collect, archive,
and code a multitude of audio-recorded conver-
sations. The technology has advanced sufficiently
that all of this can be done digitally, with relative
ease, and with computer assistance.56 Further-
more, many different coding schemes exist de-
pending on the type of outcomes desired.57
Although there are significant advantages and
disadvantages to these varied approaches, the
presence of these tools creates a sense of method-
ological plenty where there used to be a vacuum.
All of the observational studies are consistent
in recognizing that physicians and other health
care providers do not adequately discuss treat-
ment options or quality of life, or respond to emo-
tional cues from patients. If we are to believe that
these communication behaviors are important,
S-100
significant data suggest that they are not used
sufficiently and that there is plenty of room for
improvement.
On the positive side, we have also learned that
physicians and other health care providers can be
taught to communicate more effectively. Through
intensive communication courses, providers can
change their behaviors and adopt a more person-
centered style of communication that focuses
more on the socio-emotional aspects of the en-
counter. We also know that communication in-
terventions can improve patient outcomes, al-
though the most effective interventions are
considerably more proactive than simply teach-
ing communication skills.
Finally, huge gaps exist in our current knowl-
edge. We do not know what the predictors are
for patients’ preferences for information. Al-
though assumptions are made about the rela-
tionship between communication style and out-
comes, there are very few data supporting this
association. Perhaps most importantly, there are
no randomized controlled trials that change com-
munication behavior with respect to end-of-life
care and then observe the impact of such change
on relevant patient outcomes.
RECOMMENDATIONS
Recent research has clarified the nature of pro-
vider–patient communication at the end of life
and has rigorously demonstrated initial effec-
tiveness of interventions to enhance this commu-
nication. I offer the following recommendations
for furthering this important field.
1. Create larger and more diverse datasets
Until very recently, most communication stud-
ies were quite small, analyzing between five and
50 conversations, and often with a much smaller
number of health care providers than patients. If
the field is to expand, it will require large analy-
ses that are valid and generalizable. Furthermore,
there will be a need to collect communication data
(recorded encounters) in a variety of settings in-
cluding inpatient, outpatient, palliative care, and
hospice venues. To facilitate this, collection and
archiving tools should achieve a greater degree
of standardization, making it easy to combine
datasets for analysis. In addition, we should en-
courage more multicentered studies to observe
and intervene on communication behavior.
TULSKY
2. Improve upon the analysis of recorded
communication data
Huge advances have been made in the coding
of audio-recorded data. A number of different
coding tools now exist, but many are limited by
incomplete validation or a degree of specificity
that does not easily allow their use across stud-
ies. The various coding tools tend to focus on dif-
ferent types of analysis (e.g., content, interac-
tional) and do not capture all of the elements of
discourse. Ideal coding methodologies would in-
tegrate diverse approaches such as content and
voice tone. In addition, the commonly used cod-
ing systems are still not broadly accessible or easy
to use. Coding manuals and scoring methods for
the common systems are not simply available in
journal articles or by download from a website.
This sometimes makes the study of communica-
tion seem impractical to the investigator inexpe-
rienced in this field. Furthermore, several soft-
ware programs have been developed by
investigators that hugely facilitate the coding and
archiving of communication data, but these can
generally only be used in cooperation with these
investigators. Such software needs to be made
readily available, perhaps through commercial
avenues.
3. Increase our knowledge about patient
preferences for information
Much of the controversy in this field surrounds
the question of the specific pieces of information
that patients ought to receive during these en-
counters. We need a deeper understanding of pa-
tients’ preferences for information, focusing par-
ticularly on predictors for desiring certain types
of information. We also need to know how to as-
sess easily patients’ preferences in the clinical set-
ting and to create interventions that allow pa-
tients to indicate their communication needs.
4. Establish a stronger link between specific
communication behaviors and outcomes
Such a link would prove helpful in convincing
clinicians of the value of adopting certain com-
munication techniques. It would also be helpful
to have a better understanding of the optimal
means through which providers can communi-
cate with patients. We need to apply, wherever
possible, the methods of randomized controlled
trials to this question. Furthermore, the outcomes
measured in such studies must be the most dis-
COMMUNICATION AMONG PATIENTS, PROVIDERS, AND FAMILIES
tal, relevant, and patient-centered ones possible,
such as quality of life and symptom control.
5. Identify more efficient ways to teach providers
communication skills
Recent studies have provided quite convincing
evidence that health care providers can be taught
to change and to improve their communication
skills. However, all of these interventions are ex-
tremely time consuming and intense, require
many highly trained faculty, and, as a result, are
expensive and not easily disseminated. We must
design and test streamlined methods to teach
these communication skills to providers and see
whether these interventions are as effective as the
current gold standards.
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Address reprint requests to:
James A. Tulsky, M.D.
Center for Palliative Care
Duke University
Hock Plaza, Suite 1105
2424 Erwin Road
Durham, NC 27705
E-mail: jtulsky@duke.edu