After receiving a negative diagnosis, patients often are too emotional to understand or even hear you explain their condition. Help give your patients a clearer picture of what lies ahead with our tips for sensitive engagement and education.
A study focusing on delivering bad news to patients (“Does Age Really Matter? Recall of Information Presented to Newly Referred Patients With Cancer,” Journal of Clinical Oncology, November 20, 2008) finally proves something that primary care physicians have long suspected: Give a patient bad news, and he or she won’t remember much of what you say after that.
Although nurses rarely deliver the bad news, they’re often in the room when it’s given and often are the ones designated to give patient instructions immediately afterward. This research shows that patients might not hear what the nurse tells them.
The research, led by Jesse Jansen, a PhD candidate at the Netherlands Institute for Health Services Research, looked at 260 patients with cancer seeing a medical or radiation oncologist for the first time. Regardless of age, patients with the poorer prognoses recalled less than other patients. In addition, the more information the physicians gave the patients, the less they recalled.
“We’ve long known that once you give people bad news, they often don’t remember half of what they’re told after that,” said Norman Jensen, MD, an internist and professor at the University of Wisconsin School of Medicine and Public Health, and the president of the American Academy of Communication in Healthcare, based in Chesterfield, MO. “One of the things we teach our young people is that there may not be much point doing education after delivering bad news to people.”
Mary Miller, RN, BSN, a nurse clinician at the Cleveland Clinic Brain Tumor and Neuro-Oncology Center, says that when she walks into a patient’s room after she knows the doctor has delivered bad news about a brain tumor, she stays quiet at first.
“I’ve learned over the years that less is better,” Miller said. “It’s very hard to presume what’s the right thing to say. But if you give a patient a bit of time, they’ll tell you, and they’ll start to ask questions, or they may be tearful. If they are, we just sit for a few minutes.”
Nonverbal language plays a big role in how she works with patients in those first minutes after they’ve learned they have a brain tumor or that it has progressed.
“I always try to sit close,” she said. “I like to have some sort of physical contact, and there’s a certain amount that a patient’s going to be comfortable with and a certain amount I’m going to be comfortable with.”
Terry Stein, MD, director of clinician-patient communication for the Permanente Medical Group in Oakland, CA, says there’s actually a biological process that occurs when a patient is given bad news. She likes the word “frazzle” used by best-selling author and psychologist Daniel Goleman in his book Social Intelligence: The New Science of Human Relationships.
The book, Stein says, explains what happens in the brain during human interaction as shown on functional MRIs.
“There’s now this way to look at brain-blood flow and what happens to our ability to receive information and express ourselves when we’re in a state of frazzle,” Stein explained. “I’ve brought that into teaching doctors about communication to help them appreciate that whatever we can do to reduce our own frazzle, and our patients’ frazzle or anxiety, is very important.”
She says the biggest mistake doctors make when communicating bad news is that they go into a task-oriented mode as a defense against their own vulnerability to giving bad news. That self-defensiveness often leads to a lack of empathy for the patient or a data dump; that is, giving the patient too much information that might be difficult to retain under even the best circumstances.
Another mistake physicians make is to use complex language, although it might seem like everyday language to them.
“There’s a whole multisyllabic lingo that’s the way doctors talk to each other,” Stein said. “They’re often words that people don’t understand.”
Jensen adds that it can be as simple as using the word “cancer” instead of “malignancy.” Malignancy is a word that is so common to a physician’s vocabulary that they often don’t realize how many people don’t understand what it means.
Dean Schillinger, MD, a primary care physician and general internist at San Francisco General Hospital, studies physician-patient communication in vulnerable populations. Many of the patients he works with are illiterate, poverty-stricken, and from different cultures.
The most effective means of assessing if a patient has understood the diagnosis and treatment plan is by using the “teach-back” method, he said.
“It’s important that this be done correctly,” Schillinger said. “It’s not, ‘So, do you understand?’ It’s really an explicit request that the patient articulate, in his or her own words, their understanding or reaction to the new information.”
The trick is not to make patients feel more stress, as if they are undergoing a test or being interrogated. To avoid this, Schillinger says he puts the onus on himself as the teacher.
His typical conversation sounds like this:
“I want to make sure that I’ve explained myself well, so just bear with me here. When you go home and talk to your wife or talk to your kids about my thoughts on what your disease is, how are you going to explain it to them? I want to make sure I did a good job explaining it to you,” he’ll tell the patient.Jensen refers to that as “chunking and checking”-giving a chunk of information and then checking back with the patient to make sure he or she has clearly understood what you’ve said.
But, all three doctors agree, much can be done before and early on in the visit to make sure that patients retain the information they are about to receive.
First, says Jensen, prepare patients for how they will receive the news. Typically, a patient will understand that a benign test result will be given over the phone. If they’re asked to come in to discuss the results, they might assume the worst.
He suggests saying something such as, “We’re going to do this biopsy on you now and it’s possibly cancer or possibly not a cancer. Regardless of whether it’s a cancer, how about you come to the clinic to get results of the biopsy then?”
Of course, most people will tell the doctor that if it isn’t cancer, they don’t want a return visit. That puts a doctor in a dilemma, because if there must be a visit, then the patient already expects to hear the worst. But delivering bad news in person, and being able to assess body language, is always preferable to giving it over the phone.
That’s why Jensen strongly suggests that a physician encourage a patient to bring a spouse or friend, or a tape recorder. That way, there’s another set of ears to clarify the information.
In fact, Miller says she often finds herself comforting the spouse more than the patient after devastating news.
“A lot of time it’s the spouses that are crying and not the patient,” she said. “The patients truly feel a certain amount of relief because there is agony in not knowing.”
Sometimes she cries right along with them, she confesses, especially if it’s a patient she has known for a long time and the prognosis has taken a dire turn. Valuing time with the patient is most important, Miller says.
Jensen agrees, advising physicians who must deliver bad news to block out time when they won’t be disturbed by pagers, cell phones, or a rush to get to other patients.
Stein, who teaches communication skills to physicians, says the first words out of the physician’s mouth are critical, and she advises starting with the prognosis, not the diagnosis.
“Say something like, ‘You have a condition that is very treatable with medication,’ ” Stein said. “They take that fact in before they become overwhelmed with the diagnosis. It’s a way to convey the outcome before you convey the name.”
If the diagnosis is grim, Stein recommends starting with empathy. “Convey the commitment to the patient,” she recommended. “ ‘We’re here to talk about what the test showed, and I want you to know that I am committed to working with you closely throughout the course. The name of what you have is ....’ ”
Schillinger also suggests starting with the patient’s feelings, rather than with the diagnosis. “Begin the conversation by eliciting people’s fears, concerns and understandings of the situation,” he suggested. “ ‘We’ve done the tests. What are you most concerned about this being?’ You’re going to learn a lot about what people are thinking about the disease, what language they use, so you can actually match the language.”
Once the diagnosis is given, neurophysiology kicks in, adrenalin floods the brain, and the patient tunes out. That’s another reason to prepare ahead of time with just a few key points.
“Limit the information,” said Schillinger. “You give the information and then stop. I think physicians tend to feel bad. They want to provide reassurance, treatment plans, and move on, instead of letting it sit and assessing people’s understanding, feelings, and beliefs-rowing downstream with the patient instead of rowing upstream against the patient.”
This is a strategy that nurse Mary Miller also uses. “Some patients will actually say, ‘I can’t take another moment; I can’t hear another word,’” Miller said. “In those situations, we’ll talk a little bit about what we do and why, and what the overall plan is, but not the specifics. Then I give them something printed, something specific to them and what their treatment plan is going be.”
She tells them to read the papers later at home, when they’re relaxed, and jot down questions. Then she asks that the patients call her after they’ve thought up their questions, usually a few days later. There are days she takes up to 30 calls, but she feels obligated to helping patients through this difficult journey.
Handouts, as long as they are in simple language (not printed from a medical text book or journal), help the patient remember key points about the disease and treatment plans.
Schillinger did a research project using a colorful calendar that included pictures for patients to take warfarin with instructions in English and the patient’s native language. He and fellow researchers called it a visual medication schedule (VMS).
The results showed that patients receiving the VMS improved their blood anticoagulation status almost twice as fast as patients who received standard instructions.
While this doesn’t directly relate to receiving bad news, it does show that miscommunication is more common than previously thought, and that simple communication tools can improve patient understanding and compliance. This is even more critical with serious illnesses.
Finally, Stein warns that physicians shouldn’t make any assumptions about how a patient feels in receiving any health news, even if it’s not terminal.
“I think it’s important to realize that bad news takes a lot of different forms,” Stein said. “As clinicians, we tend to think about it being cancer or some kind of condition that’s terminal or not treatable. For some people, having a diagnosis of hypertension or diabetes or even testing normal can be bad news because it doesn’t provide an answer, so something that’s very common in our world can really hit people.”
Most importantly, all three physicians agree that it is imperative to schedule a follow-up visit once the information has settled in.
While the role of the internist or family physician is shifting, Jensen says it’s still important to let patients know that they must follow up.
“Ten years ago, maybe even five years ago, I played a very important role with my cancer patients,” Jensen said. “The way I conceived it was that my oncology colleagues would take care of the diagnosis and treatment of cancer. My job was to take care of the human being, so I would invite patients to come to my office on a monthly basis, or whatever they felt was right, and we could talk about things.”
Today, Jensen admits that oncologists are doing a better job communicating nonclinical information, but he still invites patients to come back whenever they feel they need to. Just being open, he says, is one of the most important things a primary care physician can do.
For nurses, Miller advises appreciating the journey the patient is on and taking the time to get to know each individual, even though brain tumors always eventually progress. It’s that kind of bad news-not the initial diagnosis, but when a patient has taken a turn for the worse-that puts everything in perspective, Miller says.
“Life is a journey that begins each day,” said Miller. “These are people we grow to love, and we know that there’ll be that visit where they come in and get that bad news.”
She recommends keeping a sense of humor with familiar patients who will appreciate it. “We cry. We cry a lot,” she said of her favorite patients. “But we probably laugh even more.” RNWAYS TO HELP PATIENTS RETAIN INFORMATION, EVEN IF IT’S BAD NEWS
1. Prepare the patient ahead of time for how they will hear test results. Ask them to bring a spouse, supportive friend, or a tape recorder to the visit.
2. Try to have conversations in person so you can watch the patient’s body language, and hold it at a time when you’re not rushed. Turn off your cell phone and pager to concentrate on the patient.
3. Decide on a few key points to make and stick with them. Patients won’t retain a “data dump” of information.
4. Start with the prognosis, not the diagnosis. Also, assess the patient’s feelings before giving the diagnosis. If the news is grim, begin the conversation by offering empathy and support.
5. Use simple language and match the patient’s language. Say “cancer” instead of “malignancy.”
6. Use a “teach-back” or “chunking-and-checking” strategy. Give the patient a small piece of information and ask them to explain it back to you. Don’t just say, “Do you understand?” and move on.
7. Use handouts in simple language to help explain the disease and treatment protocol.
8. Give patients resources if they need further help coping, such as Web sites, support groups, or social workers.
9. Set a follow-up visit to assess how the patient is feeling and answer additional questions.
Staff Editor: MARTHA K. RAYMOND, RN, BSN, BS