Beyond breaking bad news: Helping patients who suffer
Michael W Rabow and Stephen J McPhee take you through a difficult task
Box 1 - Summary points
- Clinicians are rarely taught how to
deliver bad news
- Following published recommendations
might help clinicians to deliver bad news
well
- In addition to delivering bad news,
clinicians can help patients manage its
consequences
- Important tasks include listening with
compassion and understanding the
meaning patients ascribe to bad news
- Clinicians may also offer a number of
specific responses to patients to help
ameliorate suffering
Expert advice
Despite the fact that clinicians are responsible for delivering bad news, this skill is
rarely taught in medical schools or residencies in the United States, and clinicians
are generally poor at it.1-4
Experienced clinicians who have offered recommendations for delivering bad news will agree on many points.5-8
Box 2 lists the clinician's
most important goals for the initial breaking of bad news, as cited in the medical literature.
Box 2 - Initial goals in delivering bad news
- Allow emotional ventilation
- Achieve a common perception of the
problem
- Address basic information needs
- Address immediate medical risks,
including suicide
- Respond to immediate discomforts
- Ensure a basic plan for follow up
- Anticipate what has not been talked
about
- Minimise aloneness and isolation
(reassure about non-abandonment)
Box 3 summarises specific recommendations offered in the literature for delivering bad news, organised into a simple
mnemonic ("ABCDE"). Experts also point
out that clinicians invariably respond with
their own feelings about the bad news.9
Box 3 - Techniques for delivering bad news well: ABCDE
Advance preparation
Ask what the patient already knows and understands. What is his or her coping style?
Arrange for the presence of a support person and appropriate family
Arrange a time and place that will be undisturbed (hand off beeper)
Prepare emotionally
Decide which words and phrases to use (write down a script)
Practice delivering the news
Build a therapeutic environment/relationship
Arrange a private, quiet place without interruptions
Provide adequate seating for all
Sit close enough to touch if appropriate
Reassure about pain, suffering, abandonment
Communicate well
Be direct ("I am sorry, I have bad news")
Do not use euphemisms, jargon, acronyms
Say "cancer" or "death"
Allow for silence
Use touch appropriately
Ask patient to repeat his or her understanding of the news
Arrange additional meetings
Use repetition and written explanations or reminders
Deal with patient and family reactions
Assess patient reaction
- physiologic responses: flight/fight, conservation/withdrawal
- cognitive coping strategies: denial, blame, intellectualization, disbelief, acceptance
- affective responses: anger/rage, fear/terror, anxiety, helplessness, hopelessness,
shame, relief, guilt, sadness, anticipatory grief
Listen actively, explore feelings, express empathy
Encourage and validate emotions (reflect back emotions)
Correct distortions
Offer to tell others on behalf of the patient
Evaluate the effects of the news
Explore what the news means to the patient
Address further needs, determine the patient's immediate and near term plans, assess
likelihood of suicide
Make appropriate referrals for more support
Provide written materials
Arrange follow up
Process your own feelings
Breaking bad news is sometimes seen as
a skill that clinicians can master with attention to the words, setting, and attitude with
which they deliver upsetting information.
Beyond this however, clinicians also are
called on to help manage its consequences.
This requires not just expert advice and
training, but also attention to patients' existential and spiritual issues.
Suffering and meaning
For patients, bad news often threatens
their identity and challenges their sense of
transpersonal meaning. Thus bad news
can raise profound spiritual issues.
Clinicians focus often on relieving
patients' bodily pain, less often on their
emotional distress, and seldom on their
suffering. Indeed, clinicians may view suffering as beyond their professional responsibilities. But by concentrating on physical
or emotional pain, clinicians may be ignoring important elements of meaning to the
patient as a person, thereby intensifying
suffering.
If clinicians feel unable to, or simply do
not want to, address the powerful issue of
patient suffering, it is appropriate to refer
the patient to another professional on the
healthcare team who is more comfortable
in this arena. Physicians, nurses, psychologists, social workers, and chaplains all have
a role in helping patients who suffer and
can support each other in providing care
to the patient.
Throughout the process of dealing with
suffering, the core task of the clinician
must be to understand the patient's
response to the bad news and the meaning ascribed to it. This understanding can
only come from a detailed and tolerant
exploration of the patient's unique experience of suffering.5,10
The clinician's commitment to non-abandonment and to listening openly to the patient is necessary to being able to accompany the patient
through the profound challenges of bad
news, especially at the end of life.11
Indeed, it is the trust possible in the patient clinician relationship that allows clinicians to
discover what may be of service to the patient.12,13
Clinicians can help simply by listening
with compassion. Secondly, clinicians can
provide emotional reflection and validation. Importantly, clinicians also may offer
a number of specific responses to patients
to help ameliorate suffering. These
responses are divided into "inquiries" and
"prescriptions" that can be offered to help
catalyse patients' thinking and gather
resources for facing suffering (box 4).
Box 4 - Strategies for clinicians to help patients who suffer
(1) Finding strength
Inquire about the patient's resources:
"When bad thing have happened to you before, how have you coped?"
"Whom will you turn to for support?"
Prescribe resources available to the patient:
Regular physician follow up
Psychologist, social worker, chaplain, home care referral
Reading material, videos
Specific organisations (for example, the National Colitis Association)
Internet news groups, bulletin boards, chat rooms
Support groups
(2) Enhancing growth
Inquire about compensatory pleasures and skills:
"Even though there are some things you can no longer do, what activities can you still enjoy?"
"Are there things about you this disease does not affect?"
Prescribe steps toward growth:
Identify times when patient has grown in the past
Research what has been possible for others
Encourage volunteering
(3) Embracing the moment
Inquire about current feelings and desires:
"What do you feel like doing right now?"
"Is there something you've always wished you could do? What is stopping you from doing it?"
Prescribe a redirection toward current reality:
Coordinate disease treatment with personal goals
Help set priorities
Teach or encourage meditation
(4) Searching for meaning in suffering
Inquire about the patient's disease model and illness meaning:
"What does this news mean to you?"
"Does this news scare you in any way?"
"What do you think caused your illness?"
Prescribe life examination exercises:
Journal writing, autobiography, life review
Revisiting the past through photos, people, travel
(5) Seeking acceptance and reconciliation
Inquire about personal dissatisfaction and estranged relationships:
"Where are you hardest on yourself ?"
"Do you have any regrets in life?"
"Is there anyone you really want to talk to before you die?"
"Is there someone you've never been able to forgive?"
Prescribe steps toward self-acceptance and reconciliation:
Advance care planning
Distribution of personal possessions
Communication by letter, telephone, e-mail
Meetings, goodbyes
(6) Achieving transformation
Inquire about spiritual and religious beliefs:
"Are you a spiritual or religious person?"
"Has illness ever changed you in a fundamental way in the past? If so, how?"
"Do you know anyone who was transformed in a positive way by illness?"
"Where do you think things are headed?"
Prescribe movement toward transcendence:
Spiritual mentor
Prayer
Letters to loved ones
Finding strength
Patients may be able to bear bad news
through personal strength - for example,
from previous life experience - or with the
strength of others (for example, in
bereavement groups). Strength can help
hold together the parts of a person threatened with dissolution by bad news.10
Clinicians may begin an inquiry into the
patient's resources by asking, "When bad
things have happened to you before, how
did you cope?" Simply asking "What are
your sources of strength or support?" will
help the clinician identify the patient's
need for additional resources. Asking
patients "To whom will you turn for support?" may encourage patients to mobilise
their own resources.
On the basis of an understanding of the
patient's inner strengths and social supports, clinicians might "prescribe" educational reading material, support groups,
and referrals to other professionals, to lend
strength to the suffering patient.
Enhancing growth
The challenge of bad news or illness may
be met with personal growth by the
patient. The integrity of the whole person
may be maintained if the person can compensate for what is lost.10
Many involved in
hospice work report the end of life to be
an opportunity for personal growth by
patients.14
Clinicians might ask, "Even though
there are some things you can no longer
do, what activities can you still enjoy?" With
some patients, the clinician may have to
search for an opening: "What about you as
a person does this disease not affect?"
Reviewing earlier experiences of growth
in a patient's life may assist the patient in
identifying the processes by which he or
she best learns and develops. Research
into what has been possible for others at
the end of life may challenge the patient's
sense of limitation. Volunteer work can
help some patients regain a sense of purpose and value.
Embracing the moment
Bad news often represents a threat to the
future, but the resultant suffering may be
preempted by embracing the present
moment. For example, a patient may say,
"Although I know I will get very sick from
my illness in the days ahead, today I feel well
enough to enjoy time with my grandchildren." A patient focused on current feelings,
experiences, and meaning may avoid the
pain caused by considering a future darkly
circumscribed by a bad prognosis. This
focus may help dissolve barriers and bring
about a sense of intimacy and wholeness.15
Clinicians might inquire about patients'
desires and current feelings, asking such
things as "What do you feel like doing right
now?" Alternatively, asking patients about
their hopes and dreams may reveal a
desire that the patient might fulfil earlier
rather than later: "Is there something
you've always wished you could do?" and
"What's stopping you from doing it now?"
Searching for meaning in suffering
The psychiatrist Viktor Frankl wrote:
"Man is not destroyed by suffering; he is
destroyed by suffering without meaning."Searching to understand the meaning underlying bad news or at the end of
life can provide solace. "In some way,"
Frankl wrote, "suffering ceases to be suffering at the moment it finds a meaning."16
Clinicians must understand the model
of disease employed by the patient, as well
as the patient's understanding of the
meaning of the illness. Asking a patient
"Where do you think your illness came
from?" might uncover the patient's beliefs
regarding the cause of disease and his or
her sense of responsibility for it. Patients
often find comfort in learning from their
clinicians that the bad news is not their
fault. Asking patients "How are you doing
within yourself ?" or "What does this news
mean to you?" may lead to discussions that
help patients begin to grapple with the
meaning of their illness, giving them a
sense of control.
The sufferer's question, "Why me?," is a
potent one to which clinicians must
respond-although not necessarily answer.
Clinicians can facilitate the patient's own
search for meaning by encouraging the
patient to undertake an examination of his
or her life and memories. The clinician
might offer a prescription to keep a journal, practice meditation, or look through
photograph albums.17,18
Seeking acceptance and reconciliation
The philosopher and priest Henri
Nouwen wrote about "befriending" one's
suffering as the first step towards healing.19
In accepting suffering, a patient can claim
it, become familiar with it, and, potentially, overcome it by embracing it.
Consideration of the end of life sometimes
prompts patients to forgive or seek forgiveness from loved ones. This forgiveness
can provide the patient with an unexpected positive outcome from the experience
of illness and has even led some patients
to describe their cancer as a gift.20
Regret, guilt, and shame act as barriers
to self acceptance. A clinician may gently
explore a patient's regrets or personal dissatisfaction with questions such as "Where
are you hardest on yourself ?" Asking
directly about painful or estranged current
or past relationships is appropriate for
some patients ("Is there someone you really want to talk to before you die?").
Clinicians can offer to assist patients contemplating a reconciliation with an
estranged loved one.
An acceptance of bad news allows
patients to focus on the tasks of adjusting
to their illness or on the tasks of dying,
rather than fighting fruitlessly against
inevitable death. Advance care planning
encourages patients to make personal and
legal arrangements for the time when they
become sicker or die. Some patients at the
end of life gain a sense of joy and completeness in distributing their possessions
to loved ones.
Achieving transformation
Sometimes, illness, and loss may be transformative. Patients can respond to bad
news by growing not merely stronger but
fundamentally different. In a powerful
paradox, such transformation allows
patients to discover a passion for life in the
face of impending death.14
Clinicians can ask "Are you a spiritual
person?" More direct questions include
"Has illness ever changed you in a fundamental way in the past? If so, how?" and
"Do you know anyone who was transformed in a positive way by his or her illness?"
Although transformation through suffering is an intensely personal event, the
clinician has an appropriate role in searching creatively with the patient for how
good can come from bad. Clinicians may
encourage religious patients to pray or
may help them to seek out a spiritual mentor. Sitting with, talking with, or writing letters to loved ones often helps focus
patients at the end of life on transcendent
issues such as the soul, the meaning of life,
and the nature of love.
Reviving the messenger
In ancient times, the bearer of the news
that a battle had been lost was often killed.
In a similar fashion, reacting to bad news,
some patients blame their clinicians. This
desire to "kill the messenger" seems
understandable if clinicians appear merely to deliver prognoses without compassion and to be locked in battle with death
as an adversary rather than acknowledging death as an essential part of life.21
Clinicians can deliver bad news well and
manage its consequences. Clinicians are
not responsible for knowing the answers
to patients' deeply personal and existential
questions; they are called on to be present
as witnesses to their patients' suffering and
to respect the vulnerability created by the
news they bear. Whether simply being present for a patient in shock after the delivery
of bad news or accompanying a patient
undergoing a spiritual transformation, clinicians can help meet the patient's existential needs. In working to relieve suffering,
in helping patients to discover not just how
to live but why, clinicians fulfil an obligation and enjoy a privilege deeply rooted in the healing tradition and sanctified by society at large.
To manage bad news well, the clinician
must place his or her relationship with the
patient, the strength and reality of their
human bond, over the insecurity of disease,
the threat of dissolution, and the fear of
death. Breaking bad news is not as much a
delivery as it is a dialogue between two
people, both striving to discover in each
other a simple faith in the future and an
understanding of meaning beyond themselves.5
Michael W Rabow, Stephen J McPhee, Division of General Internal Medicine, University of California, San Francisco, San Francisco, California
studentBMJ 2000;08:45-88 March ISSN 0966-6494
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This article was first published in the
Western Journal of Medicine 1999;171:260-3.