Communicating
With Dying Patients Within the Spectrum of Medical Care From Terminal Diagnosis
to Death
Marjorie D.
Wenrich, MPH; J. Randall Curtis, MD, MPH; Sarah E. Shannon, RN, PhD; Jan D.
Carline, PhD; Donna M. Ambrozy, PhD; Paul G. Ramsey, MD
Background Efforts to improve
communication between physicians and dying patients have been unsuccessful, and
guidelines for improving patient-physician communication about end-of-life care
are based primarily on expert opinion. This study assessed which aspects of
communication between patients and physicians are important in end-of-life
care.
Methods Twenty focus groups
were held with 137 individuals, including patients with chronic and terminal
illnesses, family members, health care professionals from hospice or acute care
settings, and physicians with expertise in end-of-life care. Focus group
analyses determined domains of physician skill at end-of-life care.
Communication with patients was identified as one of the most important domains.
Analyses of components important in communicating with dying patients and their
families were performed.
Results The following 6 areas
were of central importance in communicating with dying patients: talking with
patients in an honest and straightforward way, being willing to talk about
dying, giving bad news in a sensitive way, listening to patients, encouraging
questions from patients, and being sensitive to when patients are ready to talk
about death. Within these components, subthemes emerged that provide guidelines
for physicians and educators. Dying patients also identified the need to achieve
a balance between being honest and straightforward and not discouraging
hope.
Conclusions Several areas emerged
for physicians to focus their attention on when communicating with dying
patients. These findings provide guidance in how to improve this communication.
They also highlight the need to approach communication about end-of-life care as
a spectrum that requires attention from the time of a terminal diagnosis through
death.
Arch
Intern Med. 2001;161:868-874
COMMUNICATION between
physicians and dying patients about end-of-life care occurs infrequently1,
2;
when it occurs, studies suggest that there are important shortcomings in the
quality of this communication.3-5
Efforts to improve communication concerning end-of-life issues have been
unsuccessful. For example, the SUPPORT (Study to Understand Prognoses and
Preferences for Outcomes and Risks of Treatments) study found that poor
communication persisted even after an intervention designed to improve
communication.1
Although attention to communication at the end of life has increased in recent
years, most efforts have focused on specific topics, such as communicating about
advance directives and delivering bad news.6-12
For many patients, however, making decisions about medical care in the context
of a terminal or life-threatening illness is a prolonged process, and receiving
bad news and discussing advance directives are only small parts.13
Few studies have examined the entire spectrum of communication between
physicians and dying patients from diagnosis to death or the perspectives of
dying patients and family members. Given the lack of empiric data, guidelines
for improving patient-physician communication about end-of-life care have been
based primarily on expert opinion.12,
14
The primary purpose of
this study was to develop a conceptual understanding of physician skill at
end-of-life care from the perspectives of dying patients, family members of
dying patients, and health care professionals who work with dying
patients.15
A conceptual framework of 12 domains was developed using focus groups and
qualitative analyses. Communication with patients emerged as one of the most
important domains. This report examines the aspects of communication between
patients and physicians that are important in the medical care of dying
patients. The goal is to illuminate what specific steps physicians can take to
improve communication with their patients about end-of-life
care.
STUDY
DESIGN AND RECRUITMENT
Study
methods and recruitment have been described previously,15
but are reviewed in detail herein. Focus groups, a common qualitative research
method,16,
17
were used to examine physician skill at end-of-life care. We identified
individuals from the following 4 distinct categories for focus groups: patients
with a terminal diagnosis, family members who had had a loved one die, nurses
and social workers with experience in end-of-life care, and physicians
identified as experts at end-of-life care. Participants were recruited through
purposive sampling,16
in which we accepted all eligible and interested participants until target
numbers were reached. The University of Washington Human Subjects Committee,
University of Washington, Seattle, approved all procedures.
Inclusion criteria for
patients included C3 acquired immunodeficiency syndrome (AIDS) as defined by the
Centers for Disease Control and Prevention,18
oxygen-dependent chronic obstructive pulmonary disease (COPD), or metastatic
cancer or nonoperable lung cancer. To recruit patients, flyers were posted and
distributed in physicians' offices throughout Seattle. In addition, researchers
contacted leaders of AIDS, cancer, and COPD support groups in the area and
recruited patients through these groups. Inclusion criteria for family members
included having participated in or observed the medical care of a loved one who
died 2 to 12 months previously. Family members were recruited through grief
support groups, flyers in clinics, and key informants in hospice programs.
Inclusion criteria for health care workers (nurses and social workers) included
working closely with dying patients and physicians in a health care setting.
Health care workers were recruited through key informants in hospitals and
hospice programs. To recruit physicians, nurses who participated in focus groups
were asked to identify physicians who were outstanding at end-of-life care.
Inclusion criteria for physicians included practicing a specialty in which
end-of-life care for chronic conditions is commonly provided and being nominated
by at least 1 nurse from a focus group. Specialties of physicians identified
included primary care, infectious diseases, gerontology, pulmonary and critical
care medicine, oncology, and neurology.
FOCUS
GROUPS
Investigators
developed a series of moderator guides for the different focus group categories,
with similar structures and open-ended questions. Patients, family members, and
health care workers were asked to think about physicians who were especially
skilled at end-of-life care and then describe what was good or helpful about
their care and what aspects of care could have been improved. Focus group
participants were then asked to think about physicians whose care was poor and
describe what was poor about their care. Finally, participants were asked to
describe what are the most important qualities that physicians should possess to
deliver excellent end-of-life care. Moderator guides are available by request
from the authors.
A trained focus group
facilitator (D.M.A.) was recruited to conduct the focus groups. All sessions
lasted 90 minutes, except physician groups, which were 60 minutes. The
facilitator also used scripted probes to continue discussion, to refocus the
participants on issues relevant to end-of-life care, and to encourage all
participants to share their views while discouraging anyone from monopolizing
the discussion. Participants were paid $30, and all sessions were audiotaped and
transcribed verbatim.
Twenty focus groups
met, with a total of 137 participants, from October 29, 1997, through July 1,
1998. Three groups included patients with COPD (n = 24); 4 groups, patients with
AIDS (n = 36); and 4 groups, patients with cancer (n = 19). Three focus groups
included family members (n = 20), and 4, health care workers (n = 27). Finally,
2 groups included physicians from academic and community settings (n =
11).
TRANSCRIPT
ANALYSES
Qualitative
analyses for this study have been described in detail previously.15
A detailed summary is presented herein. A list of domains relevant to care of
dying patients by physicians was developed through an iterative process. Before
conducting the focus groups, investigators developed an initial list of domains
of competence through a literature review and extensive meetings among
investigators and expert consultants (from the University of Washington,
Seattle, Albert R. Jonsen, PhD, Anthony L. Back, MD, Stuart J. Farber, MD; from
Harvard University, Boston, Mass, Susan D. Block, MD; and from Brown University,
Providence, RI, Joan M. Teno, MD, MSc).
After the first 4
focus groups, investigators independently reviewed the transcripts and coded all
relevant passages of speech into 1 or more of the initial domains. New domains
were developed if passages did not appear to fit into existing domains. Using
the revised list of domains, investigator pairs each reviewed and coded 6 or 7
transcripts. Each pair independently coded all relevant passages of speech, and
then discussed and resolved coding disagreements. When agreement on a passage
could not be achieved within a pair, the passage was brought to the entire
investigative group. The team reviewed results of each transcript and modified
the list of domains. To assess interrater reliability, investigator pairs coded
the same 3 transcripts, and coding was compared across the 3 pairs. Agreement
was found for 63% of codes across all 3 pairs of coders and 89% of codes for 2
of 3 pairs.
After all transcripts
were coded, teams of investigators reviewed all passages within each domain to
identify the major themes or components of the domain. Investigators identified
at least 3 representative passages per component and used the words of patients
or families to label the components. All investigators then met to review and to
agree on all the components and representative passages.
For the current study
focusing specifically on the domain of communication with patients, subsequent
analyses were performed to determine the frequency with which each specific
component occurred in each focus group category. One investigator (M.D.W.)
reviewed the transcripts and coded all passages previously identified as falling
within the domain representing communication with patients into components. A
research assistant independently reviewed and coded the same passages. All
coding was reviewed, and discrepancies between the coders were resolved. The
numbers of components across all communication passages were then tabulated
overall and for each focus group category to provide general guidelines
concerning attention to the components within focus group discussions. Finally,
each component was further analyzed to identify main subthemes, if any, within
that component.
From transcript
analyses, 12 domains were identified related to physician competence at
end-of-life care. These domains included communication with patients, patient
education, inclusion and recognition of family, competence, pain and symptom
management, emotional support, personalization, attention to patient values,
respect and humility, support of patient decision making, accessibility and
continuity, and team coordination. Communication with patients was the most
frequently identified domain in focus groups overall. Within this domain, 6
components were identified as centrally important to communicating with dying
patients (Table
1). Each of these components is discussed separately
below.
TALKING
WITH PATIENTS IN AN HONEST AND STRAIGHTFORWARD WAY
Among
the 6 components, patients, family members, and health care workers most
frequently discussed the importance of physicians talking with patients in an
honest and straightforward way. Physicians also discussed this component
frequently. Subcomponents addressed the following key areas: candor/honesty,
laying everything out in a clear manner, understandable language, and
communication style.
Candor/Honesty
Candor/honesty was
seen by patients, family members, and health care workers as very important.
Among patients with terminal diagnoses, this candor most often referred to
provision of information about their medical condition. For example, a patient
with COPD said, "Dr ____ has never told me my illness was serious. I've asked
him, but he doesn't answer." Family members described the value of physicians
being honest with the family without destroying their hope. For example, "He was
honest with us and we said that's what we wanted and insisted on, but he never
did anything to our hope . . . he didn't belittle it and he didn't build it up."
A health care worker described the need for physicians to be honest about
prognosis:
The
question might be, "Tell me, Doc, how long do I have?" I've seen it a number of
times"Well, nobody knows that, you know," and avoiding that,
when the patient is really asking, "What are the statistics for my [condition]?
How many months do I have to live?" And that's all they want to know. . . . I
appreciate seeing the honest answer.
Honesty concerning a
patient's medical condition and prognosis appeared to go hand-in-hand with
alleviation of uncertainty for many patients: "If I'm really in trouble, I want
to know. I want to know what's going on so it isn't scary."
Laying
Everything Out in a Clear Manner
Laying everything
out in a clear manner referred to the organization of materials in combination
with being honest about the patient's medical condition. The term straightforward was used frequently to
describe the ability to be clear and direct. A family member described this
ability: "We appreciated that he was just very straightforward, very direct,
gave the options, in a way that we could all understand and was forthright with
everything . . . ." A patient with cancer said, "My doctors were very clear with
me, right off the bat. My surgeon and my chemo specialist, and that's what I
liked, you knowthey just laid it right on the line, what's
happening . . . ."
Understandable
Language
Patients and
family members expressed frustration about confusing use of jargon they could
not understand. For example, a patient with cancer said, "The oncologist spoke
in such technical terms, I was just overwhelmed. Every word had about 5 or 6
syllables." Health care workers described hearing physicians mask the meaning,
through technical language or inappropriate metaphors, so that the imminence of
a patient's death was obscured. A health care worker said:
The
doctor was trying to tell the family that the person was dying, but used this
whole baseball analogy and . . . said, this is the whatever inning and then left
the room. I said, "They're trying to say that your sister is . . . about to
die." And they're like, "What!?"
Another health care
worker said: "I had a doc one time tell a family that a patient had suffered a
terminal event. They had no clue."
Communication
Style
Expert physicians
talked more about the importance of specific communication styles than did
patients, family members, or health care workers. Specifics mentioned included
sitting down, being at the same eye level, finding private environments in which
to talk, using body language, nodding, making eye contact, and responding in a
manner that makes it clear that the physician is listening. Patients also
discussed the need for physicians to make eye contact. A patient with AIDS said,
"I had one doctor who was going to operate on me, and all he would do is look at
his paper. . . . The only time he would look at me is if I asked him a question
and then it was only briefly."
WILLINGNESS
TO TALK ABOUT DYING
Willingness
to talk about dying was raised frequently by physicians, health care workers,
and family members. Comments concerning talk about dying revolved around 3 main
areas: willingness to discuss dying, communication skills in talking about
dying, and avoiding the dying patient.
Willingness
to Discuss Dying
According to
family members and health care workers, the avoidance of discussing dying was
often an impediment to care and to adequate resolution for the patient and
family concerning the patient's terminal status. For example, a family member
said, "He'd spent a few weeks in the hospital with all these different diagnoses
continuing to roll out. And no one talked about him dying. That was really
upsetting because we didn't know how to process the information we were
getting." On the other hand, when dying was freely and sensitively discussed, it
provided needed information and comfort. A patient with AIDS said, "My wife's
real comfortable with asking him questions [like], 'What do I do when he dies? .
. . What signs should I look for?' I appreciate the candidness on his part, you
know, when we're talking about death issues."
Communication
Skills in Talking About Death
Among
physicians willing to talk about dying, it appears that there are varying levels
of skill at communicating information. One patient with cancer described the
discomfort her physician showed when the topic of dying was raised: "She just
can't come out and say it straight, you know. I'll just be sitting there going,
. . .'Well what do you mean? . . . Am I going to die tomorrow or what?' And she
kind of goes into a little shock. . . . She just has a hard time spitting it
out." On the other hand, when the discussion is handled skillfully and without
fear, it provides considerable comfort, as described by a family
member:
It was
easier for this older physician . . . to deal with the end-of-life issue for Dad
and to say, this is what's going to happen and it's hard to tell how long you
have, but this'll be the last phase. . . . So it seemed that this person was
unafraid of dealing with that fact that his patient was going to die. And that
meant a lot to us.
Avoidance
of the Dying Patient
Some family
members discussed the manner in which physicians avoided interacting with the
dying patient. This could take the form of talking to the family instead of the
patient: " . . . He [talked to] the family group together, but he didn't talk to
my dad . . . that was very frustrating that we couldn't get him to view my dad
as a human being." A physician recalled his own avoidance of telling a patient
she was dying:
I went
into the room and I did a terrible thing. I couldn't really talk to the patient.
I couldn't say, "You know, you're going to die now. I'm really sorry." I
basically [said], "Well, we'll see how it goes, we'll do our best to keep you
comfortable," but I didn't really involve myself with the patient. And I still,
to this day, regret my level of involvement with that patient. She knew darned
well. . . .
GIVING
BAD NEWS SENSITIVELY
Giving
bad news sensitively was raised in focus groups with approximately comparable
frequency to discussion concerning willingness to talk about dying. Among the 6
components, family members raised issues about giving bad news sensitively
second most frequently, and patients and health care workers raised them third
most frequently. The following 2 issues emerged as especially important in
giving bad news sensitively: delivery manner and balancing sensitivity and
honesty when discussing prognosis.
Delivery
Manner
The initial
delivery of a terminal diagnosis was often performed poorly. Poor delivery
stemmed from being too blunt, not picking an appropriate time and place to
provide bad news, and giving the sense that there was no hope. For example, a
patient with AIDS said:
The
doctor called us back right away, and he said, "Oh by the way, your tests came
back and both you and your wife have AIDS." Here I am, getting ready to go to
work. You know, rush out the door to the bus, and it's like, Whoa! No offer of
counseling or anything, that was it. . . . I mean, he basically said, "Hey,
listen, there's nothing more I can do for you."
A family member
described hearing her sister's terminal diagnosis: "I was alone in the waiting
room in the middle of the night, thinking there was this routine surgery going
on, and I was informed, rather bluntly, that . . . [she] had cancer of an
unknown type and that her chances are zip. It was devastating. Just the way that
it was delivered." Receiving bad news often went hand in hand for the patient
with the sense that the physician providing the news had given up on his or her
care, as described by a family member:
The 3
main doctors involved agreed that it was terminal, that it was immediately
terminal, was going to happen very fast. . . . [The patient] called one of them
Dr Doom, and she'd come out in gales of laughter and she'd go, "Oh my God, he
touched me! It's like . . . he already thinks I'm dead." But she mocked that,
because it was painful. I mean, they definitely didn't seem to know how to speak
to her anymore. It was like, "Well this is it." And . . . they barely spat
things out.
Balancing
Sensitivity and Honesty When Discussing Prognosis
Some patients
discussed the need for physicians to maintain a balance between being realistic
and providing them with information in a way with which they can cope. Some
patients, for example, described feeling defeated by statistics that permit them
no hope. One patient with cancer described her physician's discussion of her
prognosis as "a death threat." Another said, "I always felt like when I was
afraid of something, I could turn to this man and say, 'Give it to me plainly.'
But I . . . preface it by saying, 'But don't scare me.'" Another patient said,
"He didn't say, 'You have 20 months to live.' He said the statistics show that
the averages are 20 months. He didn't qualify that by saying, 'Well, some people
live 2 weeks, some people live 9 years.' . . . I mean, it takes a certain
sensitivity."
A health care worker
described the variability among patients in the need to maintain
hope:
Not
everybody wants to know. Some people are so comfortable with that other doctor
who holds out the hope. . . . When the honest doctor comes in, . . . they're
blown away with "This is the truth and this is probably what's going to happen."
. . . They have different styles. For some people, it's negative and for some
people, it's very positive.
LISTENING
TO PATIENTS
Patients
and physicians frequently raised the importance of listening. Family members and
health care workers discussed this area less often. Although patients often
named listening as a needed skill, they rarely went into detail as to what makes
a good listener. Physicians provided some guidelines to facilitate active
listening. Examples of comments by physicians are:
You do
develop a repertoire of behaviors that helps you to listen. For instance, if you
keep your mouth shut, you'll probably accomplish more than if you talk too much.
. . . Listening is the most important thing. . . .
How many
open-ended questions does a physician ask a patient during a visit? Because
that's a way of measuring if the physician is willing and ready to listen to
what a patient says. If he is not, he's going to ask yes and no questions and
get out of there.
ENCOURAGING
QUESTIONS
Although
this was one of the less frequently mentioned of the 6 communication components,
being open to and encouraging questions was considered an important area.
Patients and family members expressed the enhanced understanding and comfort
that resulted when physicians were open to and encouraged questions. One family
member said:
What I
found helpful was [the doctor] really made herself available to the family as
well as to my mother and . . . said, "Please call and please ask questions." . .
. and that attitude persisted throughout the whole time. So it allowed us to
talk more and probably get some help when we needed it.
Some of the most
positive comments from family members stemmed from recalling physicians who
gathered the family in a comfortable place, encouraged questions, and displayed
no discomfort with any questions posed. As a result, a family member said, "We
always knew where we stood." Inability or unwillingness to encourage questions
from patients and family members appeared to result at times from a discomfort
with silence. A health care worker described physicians' discomfort with
patients' and family members' silence:
I've been
in family conferences where physicians aren't comfortable with the silence, that
lull. . . . But [some] physicians are really able to, [through] experience or
just their own personality, sit comfortably with that silence, and then allow
and encourage people to ask questions. . . .
A corollary to
encouraging and being open to questions raised by several patients, families,
and, especially, health care workers was the importance of making sure that the
information provided is understood. A health care worker said, "I have seen some
physicians get frustrated at having to repeat information. I think when you're
dealt that information, that this is the end . . . they really can't assimilate
that in a 2-minute period. You may have to kind of go over it the next
day."
SENSITIVITY
TO WHEN PATIENTS ARE READY TO TALK ABOUT DYING
Timing
of talk about dying was the least discussed among communication components, yet
was raised as important to communication with patients. This was similar to the
theme of providing realistic but sensitive information about prognosis when
giving bad news, and appeared to call for judgment on the part of the physician
concerning how much information a patient can assimilate about his or /her
impending death. A patient with COPD said, "The ideal doctor would be able to do
what is best for and know his patient well enough to know what he would feel
most comfortable hearing. But that's a tough thing to know." A patient with AIDS
said:
One thing
that helped me with my situation was my doctors didn't tell me it was real, real
bad, but I had to kind of see it for myself, or let it sink in before I could
deal with the fact that, hey, this could be the last time you're going to see
everybody and do all the little things you like to do. . . .
The relationships
between dying patients and the physicians caring for them in their final months
and days are complex, and direct data that document those relationships are
scarce. Focus groups provide an effective qualitative technique for illuminating
the perspectives of dying patients concerning the care they receive from
physicians. In addition, family members of patients with terminal disease and
health care professionals with extensive experience in end-of-life care can
provide insights into aspects of end-of-life care provided by physicians that
are especially important.
Based on focus group
transcripts, good communication appears to be at the top of the list of
priorities for effective end-of-life care.15
Components of communication that were discussed as important by dying patients,
family members, health care workers, and expert physicians are grouped into 2
areas: basic communication skills (listening and encouraging questions), and
areas specific to end-of-life care (giving bad news sensitively, talking about
dying, and knowing when patients are ready to talk about dying). The component
raised most often, talking with patients in an honest and straightforward way,
spans basic communication skills and end-of-life care, with its dual emphasis on
truthfulness and presenting information in an understandable
manner.
These data suggest
that the skills most important to patients and their families are talking with
patients in an honest and straightforward way and listening to patients. A
terminal diagnosis introduces a period of great complexity in the lives of
patients and their families. They must cope not only with choices and decisions
about treatment and subsequent tests, procedures, and treatment regimens, but
also the many psychological, spiritual, interpersonal, and practical issues
associated with dying. The data from these focus groups highlight the extent to
which patients and families value the help of physicians who offer clear and
honest assistance and who are willing to listen to them.
Of the themes raised
in this study concerning communication, the only one that has received
considerable attention in the medical literature in relation to end-of-life
care, is giving bad news.8-12
Suggested techniques tend to focus on bad news as a single event requiring
communication with the dying patient about their terminal status. Few physicians
feel adequately trained to deliver bad news. In one study, nearly 50% of a group
of oncologists rated their own ability to break bad news as poor to fair.19
Although giving bad news came out in our analyses as a separate component of
communication with dying patients, all 6 of the communication components dealt
with communicating about bad news in one form or another. The comments of focus
group participants suggest that, once a terminal diagnosis is made,
communication with physicians consists of a wide spectrum of ongoing
communication about bad news. What patients and family members ask of physicians
in this ongoing communication are honesty, sensitivity, and a willingness to
talk about dying and listen to the patient.
Why is communicating
with dying patients so difficult for physicians? Some explanations have been
discussed in the medical literature. These include issues around fear of dying
among physicians,20,
21
psychological traits in some physicians that may lead to a need to overcome
death,22
and the historical tendency in western medicine to focus on cure.23
The data from this study suggest 2 additional reasons. First, physicians must
strive to achieve a delicate balance between providing honest information and
doing so in a sensitive way that does not discourage hope. Physicians who are
too blunt can shatter that hope for patients and leave them feeling abandoned.
Increased sensitivity to timing and enhanced communication skills around these
issues are needed. Furthermore, there is some variability between patients as to
how much information they want and how quickly they want to receive it.
Physicians must gauge when a patient is ready to hear bad news from their
discussions with the patient.
Another reason that
communicating with dying patients may be difficult is that physicians may be
trained or used to thinking of giving bad news as a 1-time event. However,
physicians often must give their patients a spectrum of bad news that begins
with the initial terminal diagnosis and continues through the eventuality of
failed treatments, physical decline, and ultimately, death. Thus, for physicians
who have a difficult time giving bad news, the need for ongoing delivery of bad
news may engender insensitivity or avoidance. Many of the negative behaviors
described by patients, family members, and health care workers (for example,
avoidance of discussing dying, poor delivery, and abandonment of the patient)
may emanate from this discomfort.
Our data suggest
specific areas that physicians can target to improve their communications with
dying patients and family members that augment previous guidelines.8-14
The top priority that came across from patients, family members, and health care
workers was the need for physicians to be honest and candid. Information should
be laid out in an organized, straightforward manner using language that is
understood. Listening with interest, especially through asking open-ended
questions, is perceived as a strong basic skill that symbolizes the physician's
concern for the patient. Giving patients and families sufficient opportunity to
ask questions in an unthreatening and unhurried environment can minimize
misinterpretations or lack of understanding. At the same time, it is important
to gauge the amount and type of information that patients can assimilate and are
ready to hear. Maintaining an element of hope is important to many patients. If
cure is not an option, then hope may be oriented toward maximizing quality of
life and making the patient comfortable. Any hope offered must be realistic and
relevant. Physicians should be ready and willing to discuss dying with patients
who are nearing the end of life and with their families. This means addressing
the topic with the patients and families directly, yet in a manner that ensures
that the patient understands he or she will not be abandoned.
This study has several
limitations. Focus group data are limited to individuals who volunteer to
participate. It is possible that individuals with negative experiences may be
more likely to volunteer for groups examining physicians' skills. However,
participants were prompted to discuss positive and negative experiences, and
comments appeared to be balanced. Other limitations introduced by the focus
group methods have been cited in the literature, including less control in group
interviews than in individual interviews, difficulty of data analysis compared
with quantitative studies, and variability between groups introduced by unique
social dynamics in each group.24
Because group dynamics may influence discussion through the influence or
domination of a few participants, the number of comments attributed to a
component of communication does not necessarily represent the relative
importance of that component. Study methods were developed and implemented to
limit domination of the discussion by one or a few participants. However, the
numbers presented are best used as general guidelines and are not appropriate
for statistical analyses. Finally, all participants resided in the Seattle area,
and the ethnic mix of participants was representative for this area. Findings
may vary in other geographic locations.
This study highlights
the need for the initiation of training programs for physicians oriented toward
enhancing communication skills when working with dying patients and their
families. Such training programs should focus on teaching physicians to talk
about dying, to listen to patients and family members, and to be sensitive to
when patients are ready to talk about dying. The ambiguity that exists between
the need to be honest and the desire to maintain hope is a challenge for
physicians and an important area for future research. The voices of the
participants in this study highlight the importance of improving the quality of
physician-patient communication throughout the spectrum of medical care at the
end of life.
Author/Article
Information
From the School of Medicine (Ms Wenrich and Dr Ramsey),
the Division of Pulmonary and Critical Care Medicine, Department of Medicine (Dr
Curtis), the Department of Health Services (Dr Curtis), the Department of
Biobehavioral Nursing and Health Systems, School of Nursing (Dr Shannon), and
the Department of Medical Education (Drs Carline and Ambrozy), University of
Washington, Seattle.
Corresponding author: Marjorie D. Wenrich,
MPH, Office of the Vice President for Medical Affairs and Dean of the School of
Medicine, University of Washington, Campus Box 356350, Seattle, WA 98195-6350
(e-mail: [log in to unmask]).
Accepted for
publication October 23, 2000.
Project support was
provided by the Open Society Institute Project on Death in America, New York,
NY.
We thank Martha Mihara
who served as research coordinator on this study. In this capacity she provided
outstanding input in instrument development, data collection, and data
analysis.
The opinions expressed
herein are those of the authors and not necessarily those of the funding
organization.
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