Demystifying the diagnosis
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Simple techniques help dermatologists tell patients what they need to know

When you explain a diagnosis, how much of what you’ve told your patients do they understand and retain? Maybe less than you think. “When patients visit the doctor, they can forget anywhere between 40 and 80 percent of what was said. There are numerous studies that show this,” said Karen Edison, MD, Philip C. Anderson professor and chair of the department of dermatology, medical director of the Missouri Telehealth Network, and director of the Center for Health Policy at the University of Missouri. “We tend to start with the diagnosis, and we talk about the anatomy and physiology [of the disorder], and we try to explain the processes to patients — and research shows that most of that goes right over their head. Patients remember one, two, and if you’re very lucky, maybe three things that we say to them.” 

That dearth of understanding can lead to a patient’s frustration, fear, and poor adherence to treatment. A key factor underlying the disconnect is not the physician’s lack of concern, but a gap in training, said Neil S. Prose, MD, professor of dermatology and pediatrics at Duke University School of Medicine and recipient of the AAD’s Gold Foundation Humanism in Medicine award for 2013. “Half the work we do as doctors is communicating with patients, yet it’s a very small part of our continuing education,” Dr. Prose said. “So much of what we teach is about diagnosis and treatment, which is extremely important.” But effective patient communication is also “teachable and learnable it’s based on some very specific skills which we rarely take the time and energy to teach.” [pagebreak]

Dr. Prose has developed a variety of curricula focused on teaching these skills to medical students, residents, and practicing physicians across several specialties, and he co-authored a two-part CME article in the Journal of the American Academy of Dermatology about enhancing physician-patient communication and education in dermatology (2013;68:353.e1-8 and 364.e1-10). Dr. Prose and Dr. Edison are among a select group of dermatologists gaining wide recognition for their contributions to advancing health literacy and patient-centered communication. Their overarching message: keep it simple; focus on a few key messages; listen to the patient; ask the patient to tell you what he or she has heard from you. They emphasize that words matter a great deal, but so do factors such as body language and the physician’s capacity to convey empathy and compassion.

Navigating the jargon

A recent Internet survey co-sponsored by the AAD and LEO Pharma asked 1,008 adults aged 25 and over, among other questions, whether they had ever heard of actinic keratosis. About 87 percent had not, a result that doesn’t surprise Dr. Edison. Would she use the term in communicating a diagnosis to a patient? “I usually tell patients what the name of the disorder is, but then quickly follow up with, What that really means is that’s a pre-cancer,’ or that has the potential to turn into a skin cancer, and that’s why we take them off,’” she explained. “Actinic keratosis —  a three-syllable word followed by a four-syllable word —  that’s not something that’s going to land.”

Using plain language is one of the key principles of effective communications, but it can be a challenge to dermatologists accustomed to the terms of their specialty. “Why do dermatologists have to use a secret language?” Dr. Edison wondered. “Why do we say erythema’ when we mean red,’ or xerosis’ when we mean dry?’ This really sets us apart and creates a barrier between us and our patients.” In addition to using “living room” language such as “not cancer” rather than “benign,” Dr. Edison suggested that dermatologists use real-world analogies to help patients understand a diagnosis. “At the VA, one of our faculty members taught me that if you have a veteran who doesn’t want a basal cell removed because it doesn’t bother him, tell him it’s like rust on a car: if you get it off early, it’s no big deal, but if you leave it there, it can eat under the paint (skin) and become a larger problem.” [pagebreak]

Dr. Prose, whose young patients are usually accompanied by a parent, said he states the medical term, writes it down, “then I move to lay terms as quickly as I can. Also, you have to tailor that discussion to the family’s health literacy; if it’s a doctor’s family, I may use more sophisticated terms, because you don’t want to talk down to people. And a lot of doctors never get a sense of the health literacy of their patients because they never give the patients time to talk.” On the other hand, dermatologists shouldn’t assume that patients who are health care providers “know everything we know,” Dr. Edison said. “When I go to my ob-gyn, I frequently have to tell him to stop, and please don’t talk to me like I’m a doctor. Because I don’t keep up with his field the way he does, and he shouldn’t assume that I do.” Another point to keep in mind, she said, is that the health literacy level of any patient can change with time and circumstances. “If you’re well fed, rested, and relaxed, your ability to take in information, understand it, and apply it to make smart health decisions may be wonderful,” she noted. “But if you’re sick, if you’re afraid, if you’re in pain, that ability to take in information is dramatically reduced.”

Ensuring that the patient knows the correct term for his or her diagnosis is important for two reasons, said Judith Hong, MD, dermatologist, staff physician at the San Francisco Veterans Medical Center, and co-author of the JAAD CME article. “It’s important for patients to know their medical history especially when prior records are unavailable,” she said. “I have a lot of patients who come in and say I had a skin cancer’ or I had something removed from my skin,’ and they have no idea about their diagnosis. Sometimes patients say no one ever told them what they had only that it had to be cut out.” In addition, she pointed out, many patients are proactive about seeking information from the Internet or from their own electronic health record, and “you don’t want them to access their medical record and just feel like they were never told about their diagnosis.” Dr. Hong credited Dr. Prose, with whom she did a Women’s Dermatologic Society mentorship on patient-centered communication, with the concept of the Google warning: “It’s good to anticipate what information might frighten a patient if they Google a term. For example, a patient with erythrotelangiectatic rosacea may Google rosacea’ and worry about developing dramatic phymatous changes.” [pagebreak]

Key messages and teach back

Given that patients tend to remember only a fraction of what they hear during an office visit, Dr. Edison recommended that dermatologists hone their discussion to no more than three key messages, repeating each one several times. Although it may feel counterintuitive to dermatologists accustomed to explaining the diagnosis first, Dr. Edison suggested emphasizing the action items first: “’This is your diagnosis, here’s what I need you to do, and this is why.’ Not This is your diagnosis and let me tell you all about it.’”

Teach back, or asking the patient to tell you what he or she has heard, gives dermatologists the opportunity to learn whether the key messages have been received before the patient leaves the office. “When I do that, I usually say, You know, I’m really bad at explaining this sometimes. Tell me what you heard.’ Then it doesn’t put them on the spot,” Dr. Prose said. Dr. Edison called teach back “the most evidence-based health literacy technique that we have today. You can say, I know when you go home, your wife is going to ask you what we did today. What are you going to tell her? I’m not testing you, I’m testing me to see how good a job I did communicating.’ People are just amazed, when they do teach back, to hear back what patients understood.”

This technique can also help the physician ensure that he or she has understood the patient, Dr. Prose said. He suggested beginning the interview with an open-ended question like “How are you today?,” “How are things going?,” or “What brings you here?,” and then actually listening to the answer. “The average doctor interrupts the patient within the first 18 seconds of the medical interview; that’s been studied twice,” he noted. “So the task is to listen without interrupting, and try to make a conscious effort to hear the patient’s story. And then I might say, So what you’re telling me is that this has been going on for months, it’s been getting worse, and you’re not able to sleep at night.’ This gives the patient a sense of confidence that you were listening.” Toward the end of the medical interview, “it’s useful to ask the patient, What other questions do you have?,’” Dr. Prose said. “That ensures you don’t miss anything, but it also gives the patient a voice in deciding when the visit is over.” [pagebreak]

Non-verbal techniques can also serve as a critical bridge between physician and patient, say the experts. Even before entering the exam room, doctors should take a moment to gather their thoughts and make a conscious decision to pay attention to the patient, Dr. Prose suggested. Then, “I feel very strongly that doctors need to sit. There’s a lot of research that shows that patients perceive that doctors spend more time when the doctor is sitting rather than standing.” That a physician should strive to maintain eye contact with the patient seems obvious, but in an era of electronic health records, the presence of a computer in an exam room “can lead to having a conversation with the computer, not with the patient,” even when the computer is a hand-held device. “The literature talks about forming a triad between the computer screen, the patient, and the doctor,” Dr. Prose said. “Then you can show the patient what’s on the screen. But I think the biggest danger is the time we spend turned away from the patient, typing.”

Delivering bad news

Empathy, honesty, and compassion should always characterize a dermatologist’s patient encounters, but particularly when the dermatologist must deliver a diagnosis of cancer or other life-changing disease, said Steven Shama, MD, a retired dermatologist and past instructor in dermatology at Harvard Medical School. Dr. Shama, who lectures extensively on topics like dealing with difficult patients and creating a positive office visit, emphasized that what might seem like relatively good news to the physician — an easily removable basal cell carcinoma, for example — can be terrifying to the patient. “You know this person will probably have a healthy life, so you have to quickly put it in those terms,” he said. “So right after the diagnosis, or even before, you could say, I have the results of the biopsy, you’re going to be fine,’ and then give the diagnosis.” Because a patient might access his or her biopsy results through an EHR, Dr. Shama recommended that the dermatologist tell the patient at the time the biopsy sample is taken that the diagnosis will likely be basal cell carcinoma and not a more serious type of cancer. [pagebreak]

When the diagnosis is a deep melanoma, and “statistically, this person has a 40 percent chance of not surviving five years, you can always turn it around and say they have a 60 percent chance of surviving,” Dr. Shama said. “Honesty is very, very important, but I think you have to surround it with hope. Once you have given them whatever news they need to get, then you say at the end of the discussion, I know I’ve told you a lot, I truly believe you’re going to be fine, and I’m here for you.’ Look them in the eyes when you say it, and tell them you’ll be available if they need to talk more, although you may need to call them back at the end of your day. They need a hug, either physical or verbal — you can touch people in so many ways other than physically.”

Before delivering a diagnosis of melanoma, Dr. Prose recommended finding a quiet place, ensuring that any friends or family members the patient might rely on are available, and giving the patient some warning, such as “We have the results of your biopsy and unfortunately, I have some bad news.” Dr. Hong said she has learned to be silent for a moment to allow the patient to absorb the information. “A lot of times we’re tempted to launch into explanations, and silence can be uncomfortable, but in reality the news can be so shocking that they’re not hearing anything else.” [pagebreak]

As a new practitioner, Dr. Hong said she makes an effort to pay attention to patient communication and education, “and I try to reflect on as many interactions as I can with each patient, thinking about what was good about it and what could have been improved.” Dr. Edison, who presents at AAD meetings on the topic of improving outcomes through patient education, said dermatologists are very receptive to the messages of health literacy and patient communication. “People get this intuitively, and physicians want their patients to understand them,” she said. “With all the changes in health reform and the movement toward paying for value and not volume, paying for better outcomes and quality, I think it’s going to become increasingly important.” 

For an online-only slideshow demonstrating how one physician used the smartphone app platform to enhance patient education and understanding, click here.

A-Z, pamphlets can help dermatologists educate patients

Dermatologists can act on all of the suggestions above and still find that their patients have more questions about their diagnoses and treatment plans. The AAD offers resources that can help increase patient understanding and retention of important information. Dermatology A-Z, available at www.aad.org/dermatologyatoz, offers information about a variety of skin, hair, and nail conditions, written in patient-friendly language and reviewed by Academy member experts. Dermatologists who want to hand their patients something at the end of the visit can also consider the AAD’s pamphlets. Visit https://www.aad.org/store/search/default.aspx?catid=5 to learn more.

 

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A-Z, pamphlets can help dermatologists educate patients