When speaking to patients with cancer, take care, warned Don Dizon, MD, FACP, because what you say might not be what they hear.
Dr. Dizon, the introductory speaker at a session on “Communicating Cancer” at the American Society of Clinical Oncology's 2013 annual meeting, held in Chicago May 31 to June 3, discussed how some common phrases may sound through the filter of a cancer diagnosis.
“Lifestyle choices raise your risk” can make patients think they are to blame for their cancer, he said. And although you may think saying “Go and live your life” sounds hopeful and inspiring after treatment, it doesn't acknowledge that a new reality is beginning for the patient.
“I am the first to admit, when I'm done with chemotherapy with a patient, I want to break out the balloons and say “Congratulations, you're done, go out and live!’,” he said. “But what's that exactly mean? I think for some patients it's a hard thing to understand what just happened to them.”
Providing detailed explanations to patients can actually hurt more than help, said Dr. Dizon, who is director of oncology sexual health at Massachusetts General Hospital Cancer Center and assistant professor of medicine at Harvard Medical School in Boston.
When patients hear physicians explain the biology and science behind their disease, what they're really thinking is “This sounds like a bad tumor,” he said. When physicians explain how cancer spreads via the lymphatic system or vascular channels, patients think, “It's really bad.” And all the time, no matter how soothing or up-front a physician tries to be, the patient is most likely thinking, “Oh my God, I'm going to die,” Dr. Dizon said.
The bottom line, he said, is that patients want information but they don't want to lose hope. “How do we engage cognitively with patients, but engage affectively?” he asked. “How do we meet their needs while meeting them where they are emotionally?”
Shared decision making and risk communication
To accomplish these goals, effective shared decision making and risk communication strategies can help, recommended another presenter, Mary C. Politi, PhD, assistant professor in the division of public health sciences at Washington University in St. Louis School of Medicine in Missouri.
Shared decision making is similar to patient-centered care, Dr. Politi said, but takes it further by breaking down the step-by-step process of managing uncertainty, making decisions and exchanging information.
Some physicians may wonder why they shouldn't just recommend a treatment, but Dr. Politi pointed out that most of medicine, especially oncology, is uncertain. “We don't know which patients may benefit, which patients may not, and under which circumstances,” she said.
Dr. Politi recommended five steps for engaging in shared decision making:
- 1. Identify the situations in which shared decision making is critical.
- 2. Acknowledge the need for a decision to the patient.
- 3. Describe available options, including uncertainty.
- 4. Elicit patients' preferences and values.
- 5. Agree on a plan for the next steps.
The first step may not be as straightforward as it seems, Dr. Politi said. She used the National Comprehensive Cancer Network's categories of evidence and consensus to illustrate. “If we start at category 3, where the recommendation is based on any level of evidence but has some major disagreement, most people would say shared decision making is appropriate, you need to discuss these options, there isn't real agreement,” she said.
For category 2B, when the recommendation is based on lower-level evidence and there is nonuniform consensus but no major disagreement, she said, most would agree that physicians should probably discuss this with the patient as well.
“But a lot of people say, “What about categories 1 and 2A? There's high-level evidence, there's uniform consensus, or maybe lower-level evidence, but we agree on a recommendation,’” she said. “But there are still some patients where they may have comorbidities, they may have increased toxicities in a specific situation, they may have strong preferences against one or another option.” In these situations, she said, shared decision making may still be appropriate.
To acknowledge the need for a decision to a patient, Dr. Politi recommended using plain language and listing options clearly. Make sure to allow the patient time to process the information, she said.
“Something that I've found really effective is that you can actually leave the room and see a patient that's there for a quick follow-up and … give them time to get dressed, get out a pen and paper, think about it for a bit, and gather their thoughts, especially if they've just received a diagnosis,” she said. “That can really help. They don't mind waiting if they're sitting there ready to hear complex information.”
Also, be open to inviting family members to participate in the discussion. “Sometimes [if they've come to the appointment alone] they want to call someone on the phone and put it on speakerphone just so there's somebody else who's listening,” she said.
It's also important to assess patients' desire to be involved in decision making after describing their options, Dr. Politi stressed. Physicians may worry that patients don't want to participate in a shared decision-making model and just want to be told what option is best. “That may be true in some cases,” Dr. Politi said. “But a lot of times studies have shown that patients really do want this information, they just don't always know how much uncertainty is present.”
Patients may ask the physician to make the decision because they think there's only one right answer, she said. Once they see a patient decision aid, for example, they may be more likely to express their preferences because they can better understand their options. (See sidebar for examples of some decision aids available online.) Some patients may still decide, after listening to the choices, that they do want the physician to make the final decision, Dr. Politi noted.
“Assessing a role preference after at least describing the decision in a simplified way is really helpful, rather than a priori going into the room and thinking “This patient may not want to engage. I'm just going to tell them what we're going to do,’” she said.
To describe options and uncertainty to a patient, keep using plain language and try to avoid jargon, Dr. Politi said. She also recommended presenting data using frequencies, such as a number out of 100 or 1,000, keeping the denominator constant across options; using absolute instead of relative risks; and presenting pictographs if you use graphs, since studies have shown that they are most helpful in communicating risk information to patients. She also cautioned against using mismatched outcomes, that is, presenting relative risks to describe benefits of treatment and absolute risks to describe harms.
“Just be careful about that when talking to your patients that they don't come in thinking they're having this watershed treatment, breakthrough treatment, with minimal harms and side effects,” she said.
Also, present the most important information first, and add detail as patients want it, she stressed. “Less can be more,” Dr. Politi said. “Some people might not want to know all of the details about the biological components of their tumor. They often want the information most relevant and useful to their decision making.”
While physicians may feel as if they're either naturally good communicators or they're not, that's not necessarily the case, said Anthony L. Back, MD, the final presenter, who is a professor of medicine at the University of Washington School of Medicine in Seattle.
“You may feel like [these communication skills] are things that just come in the package of you, but in fact there's quite a bit of evidence that every one of [them] is a function of training and experience, and not just something that you're born with,” he said.
Dr. Back offered attendees tips on talking about prognosis with patients. One problem that affects many physicians is that they have habitual ways of explaining prognosis and tend to focus on the technical aspects without picking up on patients' emotional cues, he said.
“Being detail-oriented is clearly a skill … but it's really easy to really narrow your attention and focus just on these little biomedical things, and then you kind of miss the other stuff,” he said.
He recommended the following principles for discussions about prognosis.
Offer to discuss the future. You can do this by asking a patient how much he or she has been worrying about what's to come, Dr. Back recommended. A statement like “Sometimes people are a bit hesitant to ask about what to expect” helps normalize what patients might be feeling, he said. And a question such as “What information about the future could help you be more prepared?” helps emphasize why patients might want to have this discussion.
“If you're going to ask someone to talk about something really awkward, there's got to be something in it for them,” Dr. Back said. “And what's in it for them is the ability to be prepared.”
Acknowledge emotion. If you notice a cue—for example, if the patient tells you he's scared, or if she looks down or looks away or doesn't seem to be paying attention—”that's the time that you stop,” Dr. Back said, “and say something like ‘I can see you are concerned about this,’ ‘Tell me more about the thoughts or feelings that are going through you right now,’ or kind of acknowledge that ‘This is hard to hear.’”
Acknowledging emotion is not about resolving it, Dr. Back stressed. “I'm not asking you to be a therapist. … There are other people for that,” he said. But by acknowledging what patients are feeling, you can slow everything down and allow them a minute to deal with the complicated feelings that may be swamping them.
Give information in bite-size chunks. Tell the patient, for example, “If I had 100 people with the same type of cancer and same stage as you, and followed them over time, by two years, half of the 100 will have died of the cancer and half are still alive,” Dr. Back said. He also recommended offering the 90th percentile in your practice as the best-case scenario and the 10th percentile as the worst-case scenario.
“It's a way of bracketing the survival,” he said. “It's obviously one of those things that requires a little bit of investment, but I think it pays off because patients get the sense that you're not just giving them a death sentence of a certain period of time.”
Ask for a teachback. If you ask patients to tell you what they're taking away, it goes a long way toward helping you understand how much you've gotten across, Dr. Back said. Ways to do this include using phrases like “Tell me what you're going to tell your best friend about this. It will help me know if I've been clear” or asking “What are you taking away from this part of our discussion?”
Finally, Dr. Back concluded, don't forget about the power of positive reinforcement.
“For you to express appreciation for the work that it is to be a patient … it is incredibly powerful, and one of the things that you can do to really help build rapport,” he said.