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Discussing Disease Progression and End-of-Life Decisions

Discussing Disease Progression and End-of-Life Decisions

ABSTRACT: Because most patients now want to know the truth about their diagnosis and prognosis, the ability to discuss the cancer diagnosis, disease recurrence, or treatment failure, and to solicit patients’ views about resuscitation or hospice care, are important verbal skills for oncologists and other oncology health care providers. Moreover, the ability to clearly articulate a treatment plan or elicit patient preferences for treatment are a prerequisite to informed consent. Despite these imperatives, clinicians do not routinely receive training in key communication skills that could enable them to accomplish these tasks. A body of literature is available, however, that identifies communication strategies that can (1) facilitate the establishment of a close rapport with the patient, (2) identify the patient’s information preferences, (3) ensure comprehension of key knowledge and information, (4) address the patient’s emotions in a supportive fashion, (5) elicit the patient’s key concerns, and (6) involve the patient in the treatment plan. In this article, we use dialogues between a physician and a hypothetical patient with advanced ovarian cancer to illustrate how communication techniques can be applied to accomplish these goals. We identify important benefits of the use of these techniques for both the physician and patient, and pose several questions regarding the training of physicians in this area. [ONCOLOGY 13(7):1021-1031, 1999]

Introduction

In the course of a career, an oncologist may
meet numerous times with patients and usually their families to
disclose or discuss unfavorable medical information, such as the
diagnosis of cancer, a poor prognosis, or the failure of curative
treatment. These encounters are often stressful for both the patient
and doctor.[1,2] Physician discomfort with breaking bad news may be
increased further when the physician or patient experiences sadness
or other negative emotions related to the discussion.[3]

Observational studies have indicated that many physicians struggle to
find a comfortable way to conduct these “bad news”
discussions with patients and families.[4,5] At the 1998 annual
meeting of the American Society of Clinical Oncology (ASCO), a
symposium on breaking bad news was attended by nearly 700
participants, including medical and surgical oncologists. They were
surveyed, using an automated, real-time response system, regarding
their experiences with giving bad news to patients.

Almost half of the audience indicated that they gave bad news to
patients at least 10 times per month. However, fewer than 5% had
received any formal training in this area. It is not surprising,
then, that nearly 50% of participants rated their own ability to
break bad news as only poor to fair. Furthermore, nearly 70% of
attendees indicated discomfort when faced with the need to respond to
patients’ emotional reactions, such as crying, anger, or
denial.[6 ]

In addition to being concerned about the emotional responses of the
patient and family members, clinicians who break bad news may be
concerned that this news will destroy patients’ hope.[3,6,7]
However, the relationship between the provision of disease-related
cancer information and patient level of hope appears to be complex. A
small number of patients may prefer to have minimal information and
to let the physician direct treatment with little involvement from them.[8]

There is convincing evidence, however, that most cancer patients want
the physician to provide them, in a sensitive way, with thorough
information about their diagnosis, prognosis, and treatment
options.[9-12] In addition, there is evidence that when patients who
desire complete disclosure are provided with incomplete information,
when only the positive aspects of treatment are discussed, or when
the clinician attempts to disguise a poor prognosis, patient
hopefulness may actually be eroded.[13] Many physicians, however,
underestimate the amount of information that patients wish to have.[14,15]

Whether due to the physician’s concern about upsetting the
patient or lack of awareness of the patient’s need for
information, the provision of inaccurate or incomplete information
will likely create a “cascade effect”; ie, patients who are
uninformed are unable to participate fully in decision-making—an
important goal for many cancer patients today.[16] In camouflaging
the bad news, physicians may also harm their relationship with
patients, since attempts to shield the patient from bad news through
partial disclosure may be perceived as “dishonest.”[17]

For patients who wish to be completely informed, there is always the
risk that unfavorable information may cause them to become
emotionally upset for a short time. However, over the longer term,
when physicians provide the information that the patient desires in
an empathic manner, they can increase patient satisfaction, promote
patient compliance, and even facilitate patient coping.[18-21]

In the mental health area, communication with the patient is an
important component of treatment. In this setting, verbal
interventions aimed at initiating and maintaining rapport with the
patient, eliciting the patient’s concerns and opinions, and
engaging the patient’s collaboration in treatment are recognized
as being therapeutic in and of themselves. These techniques include
active listening, clarifying and exploring the patient’s
statements and feelings, and using empathic responses to acknowledge
and validate the patient’s concerns. In the area of medical
education, acquisition of these skills comprises an important goal of
curricula focusing on doctor-patient communication.[22-24]

Studies in which these communication principles have been applied to
the disclosure of unfavorable medical information (breaking bad news)
have shown that medical students can learn a strategy for breaking
bad news when they are given appropriate education and an opportunity
to role-play.[25] Likewise, oncologists who attend workshops to
enhance communication skills can increase their confidence in
managing difficult communications with cancer patients.[26]

In this article, we present dialogues between a physician and a
hypothetical patient with advanced ovarian cancer. These
conversations illustrate how specific communication skills may be
used therapeutically at various critical stages of the illness. We
have included dialogues that occur after the disclosure of the
diagnosis since discussing subsequent unfavorable news may be more
difficult for oncologists than is divulging the diagnosis.[6]

SPIKES Six-Step Protocol

The dialogues presented in this paper illustrate an individualized,
patient-centered approach for breaking bad news. This approach is
called the SPIKES six-step protocol for breaking bad news.[27] We use
this protocol because, in addition to increasing the clinician’s
confidence in breaking bad news,[6,25] it is rated highly by oncology
practitioners[6] and incorporates the recommendations of
communication experts, patients, nurses, and oncologists for
disclosing unfavorable information to cancer patients.[1,28-31]
Briefly, the protocol covers six steps or areas:

S: Get the Setting Right—Ensure privacy and comfort (of
both physician and patient). Deliver bad news in person, allowing
sufficient time. Check to see whether the patient wants a family
member or significant other present.

P: Understand the Patient’s Perception of the Illness—Ask
what the patient knows about his or her illness and/or the purpose
of tests. Where there is an information gap, educate.

I: Obtain an Invitation to Impart Information—Find out
how much information the patient wants to have about the results,
including the prognosis.


K:
Provide Knowledge and Education—
Warn the patient about
the arrival of unfavorable news. Provide information using simple
language, frequently checking the patient’s understanding. Avoid
excessive bluntness, partial disclosure of information, or false
hope. Give broad prognostic time frames. Avoid the phrase,
“There’s nothing more we can do.”

E: Respond to the Patient’s Emotions With Empathy—Address
the patient’s (and the physician’s) emotions with empathic responses
and gestures (eg, touching). Provide support by clarifying,
exploring, and validating the patient’s feelings and concerns.

S: Provide a Summary Strategy—Review the information
provided. Respond to questions and discuss treatment options. Provide
information about support services. Offer to answer questions at a
future date.

The SPIKES protocol can be applied to a number of situations in which
negative information is disclosed, such as discussing the lack of
curative treatment options, unfavorable diagnostic results, or news
about the progression of disease.

Brief Case History

A 53-year-old woman recently completed six cycles of chemotherapy
with cisplatin (Platinol) and paclitaxel (Taxol) for stage IIIC
suboptimally tumor-reduced, poorly differentiated, epithelial ovarian
cancer. She returns for a follow-up visit after chemotherapy. Her
computed tomographic (CT) scan shows multiple peritoneal nodules 0.5
to 1.0 cm in diameter. There are no parenchymal visceral metastases.

After the physician greets the patient in the examination room, he
takes a brief interval history and performs a physical examination,
including a pelvic inspection. He suggests that the patient dress and
move to the consultation room for review of the current situation.
The following dialogue ensues.

Communication Task: Disclosure of
Treatment Failure

Step One: Assessing the Patient’s Information Needs and Preferences

Doctor: Is there anyone with you today whom you would like to
join us?

Patient: No. My husband is out of town and I came alone today.

Doctor: Would you like to wait until he can be with you?

Patient: No, I think I will be all right.

Doctor: OK. I’d like to discuss the details of your test
results with you. Would that be all right?

Patient: Yes.

Doctor: Before I do that, I’d like to verify that we both
have the same understanding of why we did these tests. Could you tell
me, in your own words, why you think the tests were done?

Patient: Well, you’ve ordered the tests to see if the
chemotherapy worked.

Doctor: That’s right. We did the tests to see how well
the cancer has responded to the treatment now.

Prior to disclosing specific disease information, the physician
checked to see whether the patient wished to include a family member
or significant other. Most patients do prefer to have someone present
for such discussions, and a significant other can support the patient
and help him or her remember information. This is important because a
number of studies have documented significant information gaps in
patient understanding about their cancer diagnosis and evaluation
procedures.[32-34] Also, by not saying immediately that everything is
fine, the physician begins to prepare the patient for bad news.

By using an open-ended question (“Could you tell me in your own
words...”), the physician also allowed the patient to express
her understanding of why he had asked for the tests. Knowing what a
patient understands about the purpose of procedures and evaluations
will prevent the clinician from breaking bad news to a patient who is
unprepared for unfavorable information.

In this case, if a gap in the patient’s knowledge were revealed,
explanation of the test results would be contraindicated until the
physician had summarized the previous treatment and the purpose of
the imaging studies. In other words, the physician should eliminate
the knowledge gap prior to disclosing new information. Occasionally,
discordance between the patient’s and the doctor’s
understanding of key information about the illness may represent a
manifestation of the patient’s psychological denial that needs
to be explored.[35]

Determining the patient’s information needs is also important
because the patient’s preparedness to understand and assimilate
information may vary over the course of the illness. For example,
early in the illness, patients may be more naive about the technical
aspects of their care. At that time, complete information can help
patients deal with the uncertainties surrounding evaluation and
treatment. Patients whose condition has worsened, on the other hand,
may want less specific information about disease progression, for
example, and may prefer that the physician focus on further treatment options.[36]

Specific communication techniques demonstrated in the above dialogue
include validating the patient’s perception through use of the
statement “that’s right” and providing a lead-in to a
subsequent statement (“We did the test &ldots;”).
Validating statements (also called “normalizing”) is one
way of providing support to the patient.

Key Communication Skills Illustrated: Eliciting patient
preferences.Establishing the agenda for discussion. Using open-ended
questions. Validating the patient’s perception of the illness.

Desired Outcomes: Establishing patient comfort and rapport.
Lending structure to the interview. Ascertaining whether an
information gap or patient denial exists. Providing support through
validation of the patient’s concerns
.

Step Two: Forecasting and Imparting the Bad News

Doctor [responding to the patient’s explanation of why
the tests were done
]: That’s right. We did the tests to see
how well the cancer has responded to the treatment. Unfortunately,
the test results were not as good as we had hoped for [doctor
pauses]. I’m sorry to tell you that the treatment has not
shrunken the tumors [pause]. Sadly, they have actually grown somewhat.

Before disclosing the ineffectiveness of the latest treatment, the
physician alerted the patient to the fact that bad news was coming.
In other words, he “fired a warning shot.” This was
accomplished through the direct statement, “The test results
were not as good as we had hoped for,” and by the use of the
words “unfortunately,” “sorry to tell you,” and
“sadly.” Forecasting the arrival of bad news and then
pausing briefly allows patients to brace themselves to hear the
unfavorable information.[37] On the other hand, breaking the bad news
too abruptly can contribute to psychological disorganization (shock)
or can mobilize pathologic denial.[29]

Key Communication Skills Illustrated: Forecasting the bad
news (also called “firing a warning shot”). Using pauses to
allow patients time to assimilate information. Giving the information
in discrete chunks
.

Desired Outcome: Facilitating understanding and
assimilation of the information.

Step Three: Responding to the Patient’s Emotional Reaction

Doctor [to the now-tearful patient who has just been
told of the unsuccessful outcome of chemotherapy
]: I know
this result is very upsetting [physician pulls his chair closer to
the patient, offers her a tissue, and pauses
].

Patient: I was just so sure the cancer was gone. I had talked
myself into believing it.

Doctor: I also wish that we had gotten a better result
[pause]. You must be very disappointed to have had your hopes dashed
like that [pause].

Patient: It’s just that I feel so bad for my husband.

Doctor: Your husband?

Patient: You know he is getting ready to retire, and last year
we bought some land out west. We were planning to build a house. I
feel like such a burden.

Doctor: A burden [pause]?

Patient: Well, if I weren’t sick we would be able to go
ahead with our house.

Doctor: I understand your concern. Although you will need more
treatment, we will see if it’s possible to adjust it to your plans.

Also, let me mention that many patients feel guilty because their
illness inconveniences others in the family [pause]. If that
feeling continues to bother you, we can arrange for some counseling
[pause]. In the meantime, I know that you and your husband are
attending a support group, and that might be one place where you can
discuss these feelings.

When patients receive life-threatening information, they may react in
an emotional manner, often with shock, disbelief, and/or
crying.[28,38] As this patient was expecting that her treatment would
have a favorable outcome, the bad news was particularly upsetting.

When patients do become emotional, it may be awkward or uncomfortable
for the physician; even short periods of crying may seem as though
they last forever. However, while it is common for patients to become
upset, it is rare for patients to have extreme reactions to bad news
(eg, to become psychotic or threaten suicide). Many patients are
embarrassed about crying, and will often say, “I thought I was
stronger than that,” and will compose themselves rather quickly.
It is important to remember that crying serves a useful function: it
releases tension and allows the patient to move on to cognitive
tasks, such as discussing further treatment plans.

When patients cry, there are several things that physicians can do.
In this example, the physician addressed the patient’s distress
and his own discomfort by using empathic responses directed at both
himself and the patient (eg, “you must be very disappointed”
and “I also wish we had gotten a better result”). Empathic
responses are indicated whenever a strong emotion is expressed. They
serve to acknowledge and validate the patient’s feelings, thus
reducing the sense of isolation that can occur when bad news is received.[28]

Rather than encouraging additional emotional expression by the
patient, empathic responses actually can facilitate the patient’s
emotional recovery. Pulling one’s chair closer, offering the
patient a tissue, and, when appropriate, touching the patient’s
arm or holding his or her hand are also empathic responses. Empathy
does not mean that the physician needs to actually feel what the
patient is experiencing, but rather, that the physician expresses an
awareness of the distress that the patient is suffering.

Notice that in this case, the doctor explored the patient’s
response to the bad news by repeating the phrase “a burden”
as a question. By doing so, he invited the patient to expand on what
she meant and was able to ascertain that the source of her distress
was not only the negative health information but also a psychosocial
concern—her guilt at disrupting her husband’s retirement
plans. Exploratory responses, such as repeating the patient’s
own words or inviting the patient to expand on a statement (eg,
“tell me more”) can help identify sources of patient concern.

Patients may be reluctant to discuss additional concerns unless
invited to do so for fear that it is inappropriate to raise these
concerns or that they are taking up too much of the doctor’s
time. In this example, once the physician understood the source of
the patient’s distress, he was able to provide her with some
realistic hope that she still might be able to carry out some of her
retirement plans.

The physician also acknowledged that he was concerned about the
patient’s feelings. Patients appreciate the physician’s
interest in the personal aspects of their illness and report that
this is very important in helping them cope.[39,40]

In addition, the physician normalized the patient’s feelings by
telling her that “many patient’s feel guilty.” This is
one way of diminishing the patient’s feelings of responsibility
and providing support.

Finally, by giving the patient information in small parcels, a
technique known as “chunking,” the physician facilitated
the assimilation of the points that he was attempting to convey.
During the deliberate pauses, he observed the patient’s verbal
and nonverbal cues.

Key Communication Skills Illustrated: Physically responding
to the patient’s emotional reaction (eg, using tissues, pulling
the chair closer). Making empathic responses. Exploring and
validating the patient’s feelings. Offering strategies to deal
with patient concerns.

Desired Outcomes: Expressing the physician’s concern
and support. Ensuring that the patient feels (1) less guilty about
being a burden to her husband, (2) more hopeful about the disruption
of her and her husband’s plans, and (3) reassured that
assistance will be available. Ensuring that the physician feels (1)
supportive to the patient, (2) more informed about issues of
importance to the patient, and (3) effective in addressing the
patient’s emotional and family concerns
.

Step Four: Tailoring the Educational Message

After addressing the patient’s emotional distress, the physician
answers several questions that the patient has about the test results.

Doctor: Now, I had planned to discuss further treatment today
if that’s okay with you [pause]. If you would like to wait until
your husband is able to join you, we can have that discussion another time.

Patient: No, I’d like to do it now.

Doctor: All right. Now, before we go on, let me check with you
to make sure that I know what you understood about the test results.

Patient: You told me that the chemotherapy didn’t shrink
the cancer very much. In fact, you said it had grown.

Doctor: That’s right. Now regarding future treatment
plans, it would be helpful for me to know how much detail you would
like to have.

In the above dialogue, the doctor left open the possibility that the
patient was not prepared to have a discussion of further treatment
plans. He also made sure that the patient understood what he had said
about her response to treatment. Finally, he asked the patient how
much she wanted to know about the subsequent treatment and left room
for the patient to ask about her prognosis.

Patient education does not mean that the doctor must provide every
detail of treatment, but rather, that the doctor should tailor the
information to the individual patient’s needs. This tailoring of
information is important because the amount of medical information a
patient desires is determined by a variety of factors that differ
from one patient to the next. These include such factors as
personality[8] and stage of disease.[36]

The physician can determine how much information a patient wants
simply by saying, “Some people want to have lots of detailed
information about their disease and its treatment while others are
more comfortable with just a general idea regarding their condition
and prefer not to hear every detail. What do you prefer?”

Key Communication Skills Illustrated: Checking with the
patient as to readiness for additional information. Ascertaining the
patient’s knowledge.

Desired Outcomes: Determining (1) how much information the
patient has assimilated, (2) how much additional information the
patient desires, and (3) when to provide the additional information.

Even when patients desire detailed information regarding their
condition and treatment, they may have difficulty assimilating this
information during the brief time allowed by the usual medical
interview. They may, therefore, find it helpful to have a written
description of their condition and of the treatment plan. One patient
with newly diagnosed breast cancer asked to take home the paper
covering the examining table after her doctor outlined, on this
paper, the steps that would be followed in her treatment
(chemotherapy, radiation, laboratory tests, decisions about further
treatment). The patient tacked up the paper in her kitchen. Some
patients also may find audiotapes of the interview or a letter
summarizing the diagnosis and treatment plan to be helpful.[41]

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