Arch Intern Med. 2001;161:868-874


Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.

-----Original Message-----
From: Oklahoma Center for Family Medicine Research Education and Training
[mailto:[log in to unmask]]On Behalf Of Hamm, Robert M.
Sent: Tuesday, November 27, 2001 10:12 AM
To: [log in to unmask]
Subject: Re: Communicating With Dying Patients Within the Spectrum of
Medical Care From Terminal Diagnosis to Death

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


Author Information
<http://archinte.ama-assn.org/issues/v161n6/rfull/#aainfo>   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 1 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r1>
, 2 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r2> ; when it occurs,
studies suggest that there are important shortcomings in the quality of this
communication. 3-5 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r3>
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 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r1>
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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r6>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r13>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r12> , 14
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r14>
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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r15>  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, 15
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r15>  but are reviewed in
detail herein. Focus groups, a common qualitative research method, 16
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r16> , 17
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r17>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r16>  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 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r18>
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 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r15>  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 ( Table 1
<http://archinte.ama-assn.org/issues/v161n6/fig_tab/ioi00562_t1.html> ).
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. 15
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r15>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r8>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r19>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r20> , 21
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r21>  psychological
traits in some physicians that may lead to a need to overcome death, 22
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r22>  and the historical
tendency in western medicine to focus on cure. 23
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r23>  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 <http://archinte.ama-assn.org/issues/v161n6/rfull/#r8>  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
<http://archinte.ama-assn.org/issues/v161n6/rfull/#r24>  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] <mailto:[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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Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.