Ed, where was this published? 
 
Thanks
 
Rob
-----Original Message-----
From: Edward E. Rylander, M.D. [mailto:[log in to unmask]]
Sent: Monday, November 26, 2001 10:55 PM
To: [log in to unmask]
Subject: Communicating With Dying Patients Within the Spectrum of
Medical Care From Terminal Diagnosis to Death


Communicating With Dying Patients Within the Spectrum of Medical Care
From Terminal Diagnosis to Death  
 
 
 <http://archinte.ama-assn.org/issues/v161n6/rfull/#aainfo> Author
Information  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
IOI00562
COMMUNICATION between physicians and dying patients about end-of-life
care occurs infrequently
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r1> 1,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r2> 2; when it
occurs, studies suggest that there are important shortcomings in the
quality of this communication.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r3> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r1> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r6> 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.  <http://archinte.ama-assn.org/issues/v161n6/rfull/#r13> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r12> 12,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r14> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r15> 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.

 

SUBJECTS AND METHODS


 
STUDY DESIGN AND RECRUITMENT
 
Study methods and recruitment have been described previously,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r15> 15 but are
reviewed in detail herein. Focus groups, a common qualitative research
method,  <http://archinte.ama-assn.org/issues/v161n6/rfull/#r16> 16,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r17> 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,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r16> 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,  <http://archinte.ama-assn.org/issues/v161n6/rfull/#r18> 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.  <http://archinte.ama-assn.org/issues/v161n6/rfull/#r15> 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.

 

RESULTS


 
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 (
<http://archinte.ama-assn.org/issues/v161n6/fig_tab/ioi00562_t1.html>
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. . . .

 

COMMENT


 
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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r15> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r8> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r19> 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,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r20> 20,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r21> 21 psychological
traits in some physicians that may lead to a need to overcome death,
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r22> 22 and the
historical tendency in western medicine to focus on cure.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r23> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r8> 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.
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r24> 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:  <mailto:[log in to unmask]> [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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