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Discussing Prognosis: "How Much Do You Want to Know?" Talking to Patients Who Are Prepared for Explicit Information

Anthony L. Back, Robert M. Arnold

From the University of Washington, Fred Hutchinson Cancer Research Center, Seattle, WA; and the Institute for Doctor-Patient Communication, University of Pittsburgh, Pittsburgh, PA

Address reprint requests to Anthony Back, MD, Seattle Cancer Care Alliance, 825 Eastlake Avenue E, PO Box 19023, Seattle, WA 98109-1023; e-mail: tonyback{at}u.washington.edu

HERE’S THE CASE

Mrs D, a 57-year-old woman with metastatic pancreatic cancer, is discussing treatment options with Dr B. How much should I tell her about prognosis? he wonders. She already seems nervous. Do I hand her the death sentence? Or sugarcoat the statistics? Maybe I'll wait to see if she asks. For the first time Mrs D looks up and says, "What should I expect?" Dr B balks, not having decided what to say. "Umm, I can't really predict," he mumbles. "Every patient is different." Perhaps I am mumbling, thinks Dr B, because I'm not telling her the whole truth. Mrs D nods vaguely without meeting his gaze and picks up her purse to leave. Is she dissatisfied also?

Dr B finds himself in a familiar dilemma: how much information should an oncologist give about a bad prognosis? One of his colleagues prides himself on being a realist, "I tell patients the truth because they need to know, whether they want to hear it or not." Another colleague feels he must give hope, "I go into cheerleader mode." Neither alternative seems optimal to Dr B—the nurses tell him that the realist tone is a little brutal, and that the cheerleader is more than a little clueless. Privately, Dr B feels his own practice—avoiding prognosis by emphasizing individual differences—borders on disingenuous. He knows a lot more about what will happen to Mrs D than he is letting on.

Realism, optimism, and avoidance are the most common strategies physicians use in discussing prognosis.¹ Although these strategies are well intended and commonly used, they also create unintended consequences. In this article, a patient-centered method for disclosing prognosis is proposed and illustrated. The method builds on existing empirical evidence about discussing prognosis^2,3 by drawing on principles of negotiation and patient-centered approaches. This approach enables an oncologist to figure out what kind of prognostic information to disclose with a particular patient at a particular time and how to individualize the discussion. This article describes how the approach works with a patient who is ready for an explicit discussion.

STRATEGIES WITH UNINTENDED CONSEQUENCES: REALISM, OPTIMISM, AVOIDANCE

Commonly used, none of these strategies are completely satisfactory, but each has useful features. The useful feature of realism is that prognostic information helps patients and physicians to make sound medical decisions. Both bioethical reasoning and empirical evidence support the importance of accurate patient understanding of prognosis.⁴ Yet patients also report that realistic prognostic discussions can be blunt and sometimes brutal.⁵ A physician who presents prognosis realistically, but without structuring the conversation before the information or responding empathetically afterwards, can be perceived as uncaring. Moreover, empirical data suggest that roughly 20% of patients, particularly those with advanced, metastatic disease, do not want complete information about their prognosis.^6-8 Giving these patients realistic information may cause psychological harm, although there are not empirical studies that address this question.

Optimism can play a useful role in supporting a patient's hopes and many patients report that they want a doctor who is hopeful.^9,10 In discussions about prognosis, however, physicians who deliberately exaggerate or overemphasize optimistic information may risk losing the trust of patients who later discover that the information they received was not entirely true.¹¹ Moreover, patients whose are overly optimistic about their chances of survival are more likely to choose life-sustaining therapies in the last 6 months of life¹²—often when these therapies are least effective. These patients, who sometimes frustrate their physicians in their pursuit of futile therapy, may lose opportunities to arrange their lives to maximize their time with loved ones, plan their financial affairs, and work toward life closure.¹³

A third strategy is to avoid prognostication altogether, often by emphasizing individual differences, unpredictability of disease course, or exceptional outliers. Collusion is a variation of this strategy in which physicians avoid providing realistic information by creating a tacit understanding that neither patient nor physician will bring up the topic.^14,15 Avoidance is based on reasonable concerns. First, physicians realize that they are often inaccurate when predicting survival for an individual.¹⁶ Second, physicians worry that discussing survival communicates a subtle psychological message that a patient will die at a given time.⁹ Third, physicians find that some patients do not want prognostic information. Finally, physicians find that bad news often causes patient distress.¹⁷ Yet physicians who avoid prognostication may seem evasive, and consequently untrustworthy, especially when studies indicate that many patients want to talk about life expectancy.² While it is clear that discussing prognosis can be stressful, the fact that the news is unpleasant is not a sufficient reason to avoid it. Personal experience shows that many patients want to know their prognosis, even though they are upset by knowing it. Thus, for some physicians, the useful aspect of avoidance is that it limits their own exposure to patient distress. In the opening example, Dr B avoided a discussion that he anticipated would be difficult, and Mrs D took away a tacit understanding that prognosis was an issue that he was either unable or unwilling to address. Dr B missed an important opportunity.

A BETTER ALTERNATIVE: HOW MUCH DO YOU WANT TO KNOW?

The approach proposed for discussing prognosis is based on work in negotiation and patient-centered communication and the research available on what patients want to know about prognosis. In addition to the finding that most patients (at least 80% in most studies) want detailed information, surveys demonstrate that there are many different possible prognostic questions that could be answered.^3,8 A qualitative study concluded that physicians can provide the right amount of information for a particular patient only after eliciting that patient's goals and values.¹⁸ Yet none of these studies outline an approach that enables a physician to decide how much and what kind of prognostic information to tell a particular patient. To develop a stepwise approach, this current proposal draws on negotiation techniques^19,20 and principles of patient-centered communication^21-23 for ways to handle communication processes that involve complex back-and-forth transactions.

Discussing prognosis is more complex than other communication tasks, such as giving bad news, because it requires a synthesis of communication skills and biomedical content knowledge. This current approach assumes that physicians are comfortable with fundamental communication skills, such as detecting emotions, responding empathetically, and eliciting patient understanding.^21,22 The approach also assumes that the physician is prepared to discuss the relevant biomedical literature describing prognosis for the illness in question.²⁴

THE OPENING QUESTION: HOW MUCH DO YOU WANT TO KNOW ABOUT PROGNOSIS?

Because studies show that a majority of patients want to discuss prognosis, it is recommended that physicians ask explicitly how patients want to talk about prognosis. Because many patients may not understand the term prognosis, an alternative is to ask, "How much do you want to know about the likely course of this illness?" These questions invite a response that goes beyond yes or no. A physician could even normalize a range of patient interest: "Some people want lots of details, some want the big picture, and others prefer that I talk to their family. What would be best for you?"

There are three kinds of answers to this question: the patient (1) wants information; (2) does not want information; (3) is ambivalent. Occasionally the patient will say that they want a lot of information, and yet their body language will contradict them. A patient who says "yes" but is hesitating, looking down, shifting in his seat, or has a facial expression indicating distress may also be saying "no" nonverbally. Paralanguage—umms, aahs, or silences—may signal thinking or hesitation, or discomfort and can be explored directly. These nonverbal cues are extremely helpful since they are under less conscious control, but they are also more ambiguous than verbal responses. The principle here is, if you have a hunch, you should explore it: "I notice you are hesitating...are you having other thoughts about this?" Or, "Is this a difficult issue for you to talk about?" The rest of this article describes how to deal with patients who seem ready for an explicit discussion. How to discuss prognosis with patients who do not want information or those who are ambivalent is addressed in a separate article.²⁵

FOR PATIENTS WHO WANT INFORMATION

After the opening question, we suggest the following steps. The principle underlying this kind of discussion is that patients are more likely to try to understand and retain information they want.

Negotiate the Content of the Discussion
Physicians can negotiate information-giving by establishing a patient's information needs and proposing ways to meet those needs. These negotiations enable patients to indicate their interest and readiness to hear specific types of information. For example, in response to a patient who said, "I want to know my prognosis," a physician might say, "What kind of information do you want about the future?" If the patient seemed stuck, the physician could say, "There are a couple of ways I can answer your question, so tell me which would be best for you. One way I can answer is to give you some statistics—the average time a person with this cancer at this stage lives. Or, I can talk about the worst case scenario and the best case scenario?²⁶ Or sometimes people are thinking about a specific event in the future, like they are hoping to live until their anniversary. Which one of these would be the most helpful?"

Provide the Information
At this point, the physician will know that the patient is interested in hearing prognostic information and can be clear about the type of information the patient wants. With the context of the discussion set, a physician can deliver information—even difficult information about poor prognoses—straightforwardly. Although little evidence exists to guide physicians in sharing empirical information,²⁴ a systematic review suggests that physicians use a mixture of positive and negative language in framing information.³ For example, if a patient has said, "I want to hear the average length of time that a person with this stage and kind of cancer lives," then the physician can answer, "The studies for patients with metastatic colon cancer show that half of the patients have died by two and a half years, and approximately 95% have died by 5 years. Or to put it another way, half of patients live longer than two and a half years and 5% live longer than 5 years."

Acknowledge the Patient's and Families' Reactions to the News Explicitly
The patient and family are likely to have some kind of emotional reaction to prognostic information, particularly if it is bad news. Physicians commonly withdraw from these emotional reactions, although a physician's verbal acknowledgment of the reaction can facilitate a deepening of the conversation. For example, "It looks like that information was not what you were expecting." Or, "What is your reaction to this?" Or, "I can see this is upsetting." For this step, empathic statements are recommended, demonstrating explicitly that the physician perceives the emotion, understands the patient's situation, respects the emotion, supports the patient, or explores the reaction.²² While an empathic silence can be extremely powerful, in this particular situation silence can also leave patients unsure whether they can talk to their physician about their emotional reactions.

Check for Understanding
Patients and family members often misinterpret complex medical information, either hearing only the bad or good aspects of the message. Thus physicians should check whether the patient heard the message the physician intended to convey. For example, a physician might ask "Tell me what you are taking away from this discussion?" Or, "Tell me what you will tell your spouse (or friend) about our conversation?"

A sample conversation with a patient who is interested in information is shown in Table 1, and a follow-up conversation with the same patient is shown in Table 2.

Physicians often rely on their impression of a conversation to know whether they have communicated effectively, yet studies indicate the self-evaluation is not always accurate. A more effective way to judge the effectiveness of a discussion about prognosis is to check-in with the patient during the conversation. For example, a physician might say, "Do you want to keep talking about this?" Or, "Am I giving you the kind of information you wanted?" Or, at the end of a conversation, "Have you have received the information you need?" While these questions may seem similar to the Checking for Understanding step, these questions are meant to focus on the process of the conversation rather than the accuracy of information delivery. Real success in discussing prognosis means engaging the patient in a process of growing understanding about their situation, understanding the patient's evolving information needs, and providing the information in a way that the patient can understand it.

CONCLUSION

Commonly used strategies for disclosing prognosis, including realism, optimism, and avoidance, have unintended consequences that do not always serve patients, family members, and physicians. Asking patients how much they want to know can facilitate an explicit discussion that meets individual patient needs. These patients may want to know information about their prognosis even if it is disappointing or upsetting. This approach provides a framework that oncologists can use to align themselves with their patients and guide patients toward sound medical decisions in the midst of difficult circumstances.

Authors' Disclosures of Potential Conflicts of Interest

The authors indicated no potential conflicts of interest.

ACKNOWLEDGMENTS

We acknowledge National Cancer Institute Grant No. R25 92055, their Oncotalk colleagues Walter Baile, MD, Kelly Fryer-Edwards, PhD, and James Tulsky, MD, and all the oncologists who have participated in the Oncotalk retreats.

NOTES

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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