D.P. is a seventy-four-year-old man who presents to an orthopaedic surgeon
for an evaluation of thigh pain. He is accompanied by his wife and daughter.
The physical examination demonstrates a well-developed patient with midthigh
tenderness. When the orthopaedic surgeon leaves the examination room to
request radiographs, he is followed by the patient's wife and daughter. They
instruct the surgeon that, if the radiographs show cancer, the patient must
not be told the diagnosis. The radiographs demonstrate a lytic lesion in the
midpart of the femur consistent with metastatic disease. Before reentering the
examination room, the physician is stopped and again instructed not to tell
D.P. the diagnosis. The family members argue that the patient is old and frail
and has a "heart condition."
A physician's failure to communicate accurately with a patient may be
intentional or unintentional. Deception can assume several forms. A physician
may outright lie, for example, by telling a patient that an abnormal test
result was indeed normal or that the test results have not yet come in when
they have. The physician may also obfuscate by cloaking bad news in vague
terminology or confusing medical jargon that the patient may not be able to
decode, such as referring to an obviously malignant tumor as a
"growth" or "changes on the x-ray." Some physicians
withhold information until the patient specifically asks a pointed question
that cannot be deflected. Whenever a physician fails to provide information to
a patient about his or her medical condition, the physician is engaging in
deception.
The scenario described above presents a common variation on a failure of
truth-telling, namely, the situation in which a patient's family asks that
grave information be kept from the patient for the patient's good. That
request puts the physician in a difficult predicament. A physician has a
fiduciary responsibility to act for the patient's good. That is usually
understood to require honest
communication1,2.
Yet, in this case, family members, who may indeed know the patient better than
the physician, are asking that information be withheld from the patient, also
for the patient's good. The physician needs a clear understanding of what the
ethical and psychological issues involved are before deciding how to
proceed.
Families give two common reasons for asking a physician to withhold
unpleasant information from the patient. Often, family members feel that they
are protecting the patient from the emotional pain and anguish associated with
a serious diagnosis or a poor prognosis. By keeping the diagnosis from the
patient, they keep him from experiencing the torment of knowing that he has
cancer and knowing that his prognosis is fatal. Family members often maintain
that the burden of knowing will be too great for the patient to bear, that it
will overwhelm the patient, or that having the news will make it impossible
for the patient to live out his remaining days.
The other common reason for the request stems from cultural mores. Bernard
Lo points out that many elderly Chinese patients believe that talking about
events under the control of evil spirits will anger those spirits and hasten
the patient's
demise3. According
to Surbone et al., Italian culture is also known for a reluctance to disclose
a serious diagnosis or poor prognosis to
patients4. Despite a
recent move toward truth-telling practices, nondisclosure or partial
disclosure is still prevalent, representing a common trend in nations
traditionally centered on family and community values. We find similar
objections to informing patients in Orthodox Jewish families and in families
from many parts of Asia, Europe, Africa, South America, and Mexico.
In light of the almost universal distribution of culture-based disapproval
of truth-telling practices, we have good reason to look for a common source of
the reluctance in human nature. Recent work in cognitive psychology on
invisible influences on judgment provides important insight into this peculiar
phenomenon. A series of papers by Wilson et
al.5-7
and Gilbert et
al.8,9
offer a framework for making sense of the position taken by many families and
many cultures. People systematically focus primarily on the negative reactions
to a future event while largely ignoring other outcomes (this is referred to
as focalism), including their ability to generate satisfaction with whatever
outcomes come to pass. They also overpredict the duration of their negative
emotional reaction to future events (durability bias). These deformities in
judgment have a compounding effect and systematically lead people to reach
unjustified and distorted conclusions about their own emotional responses to
future events (affective forecasting) and to those of others. The robustness
of these researchers' findings suggests that everyone is vulnerable to
affective forecasting biases that lead people, including patients, loving
family members, clinicians, and policy makers, to exaggerate the psychological
impact of bad news.
Family members who adamantly refuse to allow a doctor to inform a patient
about a serious diagnosis or a poor prognosis are behaving just as Wilson et
al. and Gilbert et al. would have predicted. It is likely that such families
have focused their attention primarily on the possible negative emotional
reactions following disclosure; have exaggerated the likelihood, seriousness,
and duration of the response; and have overlooked the natural ability of the
individual to come to grips with whatever the future holds.
There are many reasons for physicians to refrain from deceiving patients by
withholding information or lying. Over time, deception and lies are usually
revealed. In the medical context, when many health-care professionals have to
know the truth, and when the patient's worsening condition reveals the
obvious, it is very likely that the patient will come to know the truth and to
know that he or she was deceived. Even if the deception was practiced from
beneficent motives, the person who was deceived can be expected to feel
dishonored, betrayed, and angry.
Those who want to deceive the patient are usually trying to do something
good for their loved one. But, when people are concealing something, they tend
to avoid situations where they might let the cat out of the bag. That
avoidance amounts to a distancing of both the family members and the
health-care providers at a time when the patient would most welcome attention
and intimacy. When the truth is ultimately revealed, neither the physician nor
the family will be trusted and wanted. So serious harm and emotional
abandonment are the likely outcomes of deception initiated for the patient's
good.
We typically withhold serious and distressing information from children.
When such information is withheld from a competent adult, the person is being
treated as a child. This is disrespectful and a denial of autonomy. Without
honest information regarding the diagnosis, treatment options, and prognosis,
the patient cannot possibly make informed, autonomous decisions about medical
care. For these reasons, Wear et al. recommended that physicians provide a
candid explanation of the patient's basic situation and prospects, with and
without treatment, and a clear sense of the potential downside and limitations
of the therapy being
proposed10. If, as
in the case above, the patient's condition is terminal, he or she may very
well want the opportunity to look after those matters that are most important.
As Jones et al. point out, the patient should be given the opportunity to come
to terms with unresolved emotional, interpersonal, and spiritual
issues11. These
intensely private concerns should not be denied by well-meaning spouses,
children, or compassionate physicians.
It is difficult, if not impossible, for patients to participate effectively
in their care without knowing their diagnosis and prognosis. The patient in
the case above will undoubtedly need to undergo additional testing, possible
surgery, chemotherapy, radiation, and palliative care if the disease is
widespread. Legally, none of the diagnostic or treatment protocols can be
initiated without the patient's informed consent. Furthermore, without
understanding the diagnosis and the prognosis, it is hard to imagine why a
patient would endure burdensome interventions. Also, to the extent that he
accepts them without being informed, it becomes increasingly likely that he
will inadvertently discover his diagnosis, which is apt to lead to mistrust of
his treating physician and the family members who were trying to protect
him.
Responding to family requests for withholding information, aside from the
extraordinarily rare situations that meet the standard of "therapeutic
exceptions" (circumstances such as the threat of suicide or heart attack
in which a patient's life is endangered by disclosing bad news), physicians
are legally and ethically required to fully and accurately inform patients
about their diagnosis, prognosis, and treatment options. Given the clear
direction from ethics and from law, and the opposing common instructions from
family members, physicians need a well-supported strategy for managing such
dilemmas.
One important preliminary and precautionary first step is to ascertain just
how the patient wants information to be handled. Although there are a few
patients who do not want to know their personal medical information, and
whereas many relatives will say that their loved one does not want to be
informed or cannot bear the news, the only way that the physician can know
what the patient actually wants is by asking. Every initial history and
physical examination should include a question about who should be given
medical information. It does not take much time to say, "I shall be
gathering information about your condition in order to make a diagnosis.
Should I be giving that information to you, to you together with a family
member, or is there someone besides you to whom I should be speaking?"
Most patients want the information, and they also want their family members to
be informed. Asking such a question early on provides you with crucial
information and avoids a lot of doubt and worry.
In most cases, the family's desire to keep the information from the patient
stems from their desire to spare the patient emotional pain and also their
desire to spare themselves the difficult task of breaking the bad news. It is
important for the physician to be aware of both components and to respond to
both concerns. Armed with the studies of affective forecasting and the above
arguments, the physician can assure family members that patients do better
when they are informed and that more harm than good is accomplished by
deception. It is also important for the physician to undertake the burden of
informing the patient. To that end, the physician can inform the family that
as test and study results reveal information, the physician, patient, and
family will all sit down together and the physician will fully explain the
situation and answer all questions. In each of these conversations, it is
imperative for the physician to convey all of the information honestly,
including the uncertainties about prognosis and life expectancy. It is also
crucial to identify and correct any misunderstandings. When it is appropriate,
the physician should also provide information on available counseling services
that will help them through the difficult time that lies ahead.
Lastly, physicians must overcome their own reluctance to reveal bad news.
No one likes to have these painful conversations. They often represent
failures of our treatment plans and limitations of our capacities as healers.
We are fearful of transmitting bad news because we worry about how patients
and their family members will respond. Also, knowing that our words will have
a profound effect, we worry about our ability to do it well. We are anxious
about our own limitations to help patients to cope with devastating news. In
addition, we too are vulnerable to the exaggerating bias of affective
forecasting. Nevertheless, patients have a right to know their diagnosis and
prognosis and to be surrounded by supportive family members during these
difficult times. Those paramount considerations mean that we have to commit
ourselves to telling the truth and to developing the skills to do it well.