Communicating Diagnosis and Prognosis to Patients With Cancer: Guidance for Healthcare Professionals

Linda Emanuel, MD, PhD; Frank D. Ferris, MD, FAAPHM; Charles F. von Gunten, MD, PhD; Jaime H. Von Roenn, MD

Disclosures

January 07, 2011

In This Article

Six Steps for Clarifying Diagnosis and Prognosis

It is difficult to present accurate diagnostic and prognostic information to patients and their families. This article adapts the 6-step protocol, SPIKES, to guide the communication and clarification of diagnosis and prognosis (Table 8).[53,54,55]During the first 3 steps, prepare to share the information. Start by gathering the facts. Then sit down comfortably and assess the patient's understanding. Inquire what the patient knows, and what he or she would like to know about the diagnosis and/or prognosis.

Some of these first 3 steps can be completed before the session at which you actually discuss the news. During the last 3 steps, manage the information carefully. Deliver the news clearly and succinctly and without using jargon. Once the facts have been stated, stop talking. Allow time for the patient's reactions and respond to them. Once the patient is settled, plan for follow-up.

Table 8. 6-Step Protocol: SPIKES

SPIKES 6-Step Protocol to Clarify Diagnosis and Prognosis
Setting. 1. Getting started
Perception. 2. What does the patient know?
Invitation 3. How much does the patient want to know?
Knowledge 4. Share the information
Emotion 5. Respond to feelings
Subsequent 6. Plan next steps and follow up


Don't consider this protocol to be a script to be followed rigorously. Use it as a tool to guide important aspects of an interaction in which difficult information is shared.

Step 1: Getting Started

Before communicating any news, plan what will be discussed. Confirm the medical facts of the case (eg, diagnosis, prognosis, etc). Ensure that all needed information is available. If this is an unfamiliar task, rehearse what you will say. Don't delegate the task. If several team members will be present, it may be helpful for the team to meet to plan the communication in advance.

Create an environment that is conducive to effective communication. Ensure privacy and adequate seating. Ensure that a box of facial tissues and a glass of water are handy.

Allow adequate time for the discussion. Do not slip this into a short interval between other critical tasks. Prevent interruptions. Arrange to hold telephone calls and pages. Determine who else the patient would like to have present for the discussion. This might include family, significant others, surrogate decision makers, and/or key members of the interdisciplinary team (eg, nurse, social worker, chaplain, etc).

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Step 2: What Does the Patient Know?

Start the discussion by establishing what the patient and family know about the patient's health. With this information, ascertain whether the patient and family will be able to comprehend the information. Questions might include:

  • "What do you understand about your diagnosis and its prognosis?"

  • "How would you describe the change in your medical situation?"

  • "Have you been worried about your illness or treatment?"

  • "What did you think might be causing symptom x?"

  • "When you developed new symptoms, what did you think might be going on?"

  • "What are your expectations from treatment?"

  • "Did you think something serious was going on when you developed new symptoms?"

  • "How do you expect your diagnosis to affect your survival?"

Occasionally a patient will fall silent and seem completely unprepared or unable to respond. To ease the situation and stimulate discussion, try to clarify what the patient understands about his or her medical history and recent investigations. Identify absent family members or others on whom the patient relies. If this is ineffective and the patient remains silent, or if it appears the patient requires more support, it may be better to reschedule the meeting for another time.

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Step 3: How Much Does the Patient Want to Know?

Next, establish what and how much each patient wants to know. People handle information differently, depending on their race, ethnicity and culture, religion, and socioeconomic class. Each person has the right to voluntarily decline to receive any information and may designate someone else to communicate on his or her behalf. Ask the patient and family how they would like to receive information. If the patient prefers not to receive critical information, establish to whom information should be given. Possible questions include the following:

  • "If the tests turn out to show something serious, do you want to know?"

  • "Are you the kind of person who likes to know all the facts?"

  • "Would you like me to tell you the full details of your treatment and prognosis? If not, is there somebody else you would like me to talk to?"

  • "Some people really do not want to be told how the cancer will affect survival, but would rather their families be told instead. What do you prefer?"

  • "Do you want me to go over the anticipated results of the treatment now, and explain exactly how I think it will affect you?"

  • "Who would you like me to talk to about these issues?"

Before introducing the subject of prognosis, or directly answering questions about prognosis, consider starting with questions like:

  • "Many patients want to know the prognosis. Is this true for you?"

  • "What are you expecting to happen?"

  • "How specific do you want me to be?"

  • "What experiences have you had with others with cancer?"

  • "What experiences have you had with others who have died?"

  • "What are you afraid will happen?"

The way the patient answers the questions will give clues to her or his educational level, verbal fluency, and family dynamics. Listen carefully and observe everyone's responses to your questions. Use this experience to influence how you deliver news to the patient.

Advance preparation. All of the discussion to this point is about preparation to give the diagnosis and prognosis. Some of that preparation might best occur well before the information is actually given. The initial assessment and subsequent discussions that prepare the patient for critical tests provide opportunities to determine what the patient already knows and how he or she would like to have information handled.

Provide periodic information and cautions that the news might not always be good. With this incremental approach and periodic "warning shots," the patient and family may be better prepared for bad news.

When the family says "don't tell." Many times, family members will ask the physician not to tell the patient the diagnosis, prognosis, or other important information. Although it is the physician's legal obligation to obtain informed consent from the patient, an effective therapeutic relationship requires a congenial alliance with the family.

Rather than confronting their request with, "I have to tell the patient," inquire why they are concerned. Possible questions include:

  • "Why don't you want me to tell the patient?"

  • "What is it that you are afraid I will say?"

  • "Tell me about your experience with cancer."

  • "Are there personal, cultural, or religious issues that I should know about?"

Suggest that you go to the patient together to ask how much he or she wants to know about his or her health and what questions there might be. Share anecdotes and talk about the pain of secrecy and the opportunities that come with open communication.

These situations may require significant negotiation. In particularly difficult cases, support from the institutional ethics committee might be helpful. Ultimately, it might be decided, after discussion with the patient, that details of diagnosis and prognosis and treatment decisions will be discussed only with the family. However, unless the patient has previously indicated that he or she wants no information, hiding the diagnosis or important information about prognosis or treatment from the patient is neither ethical nor legally acceptable.

There are ethnic and cultural differences in the preferred handling of information. Whereas knowledge of such differences is useful as background information, global conclusions about them rarely help with decision making for an individual. The patient should be asked about general preferences for handling of medical information and decision making early in the clinical relationship before significant information needs to be shared. This will help the clinician avoid making a misstep.

Step 4: Share the Information

Before sharing information, consider the implications of the prognostic information you provide. Patients who wish to plan their lives want information that is more detailed. Those who are terrified may do better with answers that are more general. Definitive answers (eg, "You will be cured," or "You have 6 months to live,") run the risk of producing disappointment if the time proves to be less, and anger or frustration if you underestimate the patient's lifespan. Consider responding by giving a range of time that encompasses an average life expectancy, such as "hours to days," "days to weeks," "weeks to months," "months to years," etc. Alternatively, indicate averages such as "one-third of people will be alive and well a year from now; half will live about 6 months. Exactly what will happen for you, I don't know." After giving a range, it may help to emphasize the limits of prediction by saying something like, "What this will mean for you I can't tell. We need to hope for the best, while we plan for the worst. We can't predict surprises and should plan in case something happens. We'll have a better sense over time how things will evolve for you."

Once you are ready, deliver the information in a sensitive but straightforward manner. Start by letting the patient know that you have news, then share the facts about the patient's diagnosis and prognosis. Say it, and then stop speaking. Avoid delivering all of the information in a single, steady monologue. Use simple language that is easy to understand. Avoid technical jargon or euphemisms. Pause frequently. Check for understanding. Use silence and body language as tools to facilitate the discussion. Do not minimize the severity of the situation. Well-intentioned efforts to "soften the blow" can lead to vagueness and confusion.

You might choose to tell the diagnosis and prognosis by using language such as:

  • "I feel badly to have to tell you this, but your cancer has recurred and you only have a few months left to live."

  • "I'm afraid the news is not good. The CT showed that your colon cancer has spread to your liver. This is a treatable, but not curable disease."

  • "Unfortunately, there's no question about the CT scan: the cancer has spread to your liver."

  • "The report is back, and it's not as we had hoped. It showed that there is cancer in your liver. I'm afraid this is not curable disease."

  • "I'm afraid I have bad news. The CT scan shows your husband has cancer throughout his liver."

"I'm sorry." The phrase "I'm sorry" can be interpreted to imply that the physician is responsible for the situation. It can also be misinterpreted as pity or aloofness. If you use the phrase, adjust it to show empathy. For example, "I'm sorry to have to tell you this." The phrase, "I wish things were different" can be equally effective at communicating empathy without conveying responsibility for the condition.[56]

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Step 5: Respond to Feelings

Patients and families respond to bad news in a variety of ways. Some respond emotionally with tears, anger, sadness, love, anxiety, relief, or other strong emotions. Others experience denial, blame, guilt, disbelief, fear, or a sense of loss or shame, or may even intellectualize why the situation is happening. A few may demonstrate reflexive psychophysiologic responses such as "fight or flight" and may even try to bolt from the room or totally withdraw into themselves.

Outbursts of strong emotion make many physicians and other members of the healthcare team uncomfortable.[57] Give the patient and family time to react. Be prepared to support them through a broad range of reactions. Listen quietly and attentively. Acknowledge their emotions. Ask them to describe their feelings:

  • "I imagine this is difficult news..."

  • "You appear to be angry. Can you tell me what you are feeling?"

  • "Does this news frighten you?"

  • "Tell me more about how you are feeling about what I just said."

  • "What worries you most?"

  • "What does this news mean to you?"

  • "I wish the news were different."

  • "I'll try to help you."

  • "Is there anyone you would like me to call?"

  • "I'll help you tell your son."

Remind them that their responses are normal. Make a box of facial tissue available. Nonverbal communication can also be helpful. Consider touching the patient in an appropriate, reassuring manner. Offer a drink of water, a cup of tea, or something else that might be soothing.

Allow time for the patient and family to express all of their immediate feelings. Don't rush them. Once the emotion is spent, most people will be able to move on. This usually lasts only a few minutes. The most frequent physician error is to talk.[58] Yet, this is counterproductive. A shared understanding of the news and its meaning enhances the physician-patient relationship and facilitates future decision-making and planning.

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Step 6: Plan Next Steps and Follow up

Establish a plan for the next steps. This might include gathering additional information or performing further tests. Treat current symptoms. It might include helping parents tell their child about the illness and what treatment will be like. Arrange for appropriate referrals. Explain plans for additional treatment. Discuss potential sources of emotional and practical support (eg, family, significant others, friends, social worker, spiritual counselor, peer support group, professional therapist, hospice, home health agency, etc).

Always caution patients and families that unexpected events can happen. Suggest that they get their affairs in order so they won't be vulnerable if something unexpected does occur. Reassure them that you will be available to them to deal with issues and support them throughout the illness, whatever happens. Help clarify what can be realistically expected and distinguish this from what might be wished for or what is most feared. Identify the miraculous for what it is -- something outside of usual experience that happens exceedingly rarely.

Reassure the patient and family that they are not being abandoned and that you will be actively engaged in an ongoing plan to help. Indicate how the patient and family can reach you to answer additional questions. Establish a time for a follow-up appointment.

Ensure that the patient will be safe when he or she leaves. Is the patient able to drive home alone? Is the patient distraught, feeling desperate, or suicidal? Is there someone at home to provide support? At future visits, elements of this protocol might need to be revisited. Many patients and families require repetition of the news to gain a complete understanding of their situation.

Unrealistic expectations. Despite the communication of accurate information, a survey of surgical, medical, pediatric, and radiation oncologists showed that 29% thought patients' unrealistic expectations were a challenge; 50% thought families' unrealistic expectations were a challenge. Apply the 6-step protocol in cases where unrealistic expectations are expressed. In particular, focus on step 2:

  • "What is it that the patient and family know?"

  • "What are they expecting?"

  • "What have they heard the oncologist say?"

  • "What other information do they have?"

Try to "suspend belief" and form a mental image of the patient's or family's point of view. What might have initially appeared to be an unrealistic expectation could seem less bizarre once the point of view is understood. Differences in values (eg, "it's important to try anything, no matter how small the chance" or "it's important to be a fighter") may emerge. Differences in values are not resolved by scientific data. Once a common understanding is developed, explore how such conflicts can be resolved.

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