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
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.
SUBJECTS AND METHODS
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.
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).
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 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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