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Patients with cancer are scared and confused - there’s so much they need to know. Here’s how to make sure they hear you.
A new patient comes in for a consult; the long discussion overflows with emotion and critical information. You go through a mental checklist to make sure you’ve covered everything. He nods after each point. Then, when he’s about to leave, you ask him, “What’s the most important thing you learned?” He can’t remember a thing.
Simply getting past the shock of a cancer diagnosis can be difficult for patients, says Claudette DeLenardo, director of e-health technologies at Grand River Regional Cancer Centre in Kitchener, Ontario, Canada. “Patients are grieving,” she says.
“It impacts their ability to learn.”
But learn they must. Here’s some thoughtful and useful advice from those in the field to help you guide your patients through an educational maze nearly as complex as the disease itself.
Have it their way
Everybody has a preferred learning style. Data-gathering people respond to facts and figures, while visually oriented people may prefer a book or pamphlet with pictures, or a take-home DVD. DeLenardo says that adjusting the teaching to a patient is critical to success, saying, “We need to focus on the key messages a patient desires.”
Everybody also has a preferred involvement level. “There’s so much information,” says DeLenardo. “Some patients are so prepared. There are patients who want to be involved in their care … some want their providers to do it.” Still others depend on their families to know the details.
Philadelphia oncologist Marisa Weiss suggests asking two questions:
1. “How can I be the most helpful to you today?”
2. “What is your understanding of your situation?”
Weiss believes that these two questions help her to “do a better job in a shorter period of time. … [Patients] feel I listen and I care.”
Stop and listen to the patient’s answer to the first question before asking the second question, urges Weiss, who is president and founder of BreastCancer.org and the author of three books, including her latest, “Seven Minutes! How to Get the Most from Your Doctor’s Visit.”
She says she learns a lot by letting her patients speak upfront “then I know the language they use, their literacy level, how they interact. That makes it much easier with me - I don’t waste time with my approach and then they didn’t understand what I said.”
Of course, sometimes this backfires, because some people talk too much and veer off point. Weiss gently prods them back on course by reminding the patient that “we’ve got to focus on you and why you came here today.”
Education techniques vary as widely as the people who need educating. “I like to have somebody else in the room with [a patient],” says Dev Paul, a medical oncologist at the Denver-Rose location of Rocky Mountain Cancer Centers, because “the minute you say cancer, they go blank.”
Cary Stoffer, breast care coordinator for Redwood Regional Medical Group in the San Francisco Bay area, agrees that families can - and should - get very involved. That is especially during the initial education meetings, says the “Concierge of Care,” as Stoffer is affectionately known. “We encourage people to bring their spouses and children; we’ve even blocked off a consult room for 20 family members. We want to lessen the family’s fears, too. When something’s going wrong they’re the ones who deal with it.”
Here are some other suggested ways to get information to your patients:
• Break up the education. “A new consultation is at least an hour and a half,” says Kris Hartigan, director of nursing at Redwood Regional. It’s time well spent because patients need time to adjust to this turn in their lives. But the education stops there on that day - no going to the nurse practitioner for more education unless it’s absolutely necessary. “They’re glazed over,” says Hartigan.
Redwood Regional also has a policy for a separate education appointment before chemotherapy begins, Hartigan says. “Some people balk at that because they don’t want another appointment. … But then their anxiety level is so high for the actual chemo.”
• Give your full attention. Don’t think about what groceries you need to buy or who you need to call back that day. “Use people’s names,” Weiss says. This simple act of calling a patient by name - especially a psychologically challenged or highly needy one - can cut through the dense fog of emotion and coax a patient back to listening, learning, and complying.
• Confront the compulsive nodder. “People want to be polite,” says Weiss. Still, it’s frustrating when a patient nods at everything, because you don’t know which nod is etiquette and which is comprehension. To combat this, routinely stop and ask the patient if he is with you. “If I’m really concerned,” Weiss says, “I’ll say, ‘Tell me what I just said.’”
• Answer one question at a time. The aforementioned “repeat-back” method works great for a head-bobber, but what about the patient who asks a question but then barrels ahead, asking another one without giving time to listen to the first answer? Weiss thinks the impulse comes from fear, but sometimes it’s because the question does not belong to the patient; it might be a question the patient’s husband told her to ask, for example. Weiss takes a straightforward approach. She’ll say, “Excuse me, I’m a little confused here. You asked a question and then you asked another while I was answering.”
The reaction to this is generally positive. “They get a little reality check,” says Weiss, although handling such a dicey situation is never easy. “Everyone’s got a different gestalt. Someone without people skills, who is nervous, tends to ramble - that aspect is certainly not limited to going to the doctor.”
• Create a kit. For patients needing chemotherapy, Stoffer puts together a customized chemo teaching kit so people can better track which therapies they’re undergoing, where they are in their care continuum, what side effects to expect, and more.
Breast cancer patients use a binder that’s filled with pertinent information, including fliers on various educational opportunities, including support groups.
• Be consistent throughout your practice. Regardless, the information given to oncology patients “should be handled organizationally with clinical practice guidelines,” advises DeLenardo, “so that the knowledge transfer is consistent.”
• Respect your patients’ growing body of knowledge. Some patients will become “amateur experts” in their disease states. “Some can calculate blood values in their heads, which is incredible,” says DeLenardo. “Managing the disease is part of [a patient’s] life and therefore part of their work.” A collaborative education model, rather than teacher-student, will work better in these cases.
• Enlist your survivors’ help. Five months ago, Redwood Regional took peer-to-peer support one step further: “We have several patients that are now finishing up their treatments who take time to meet with newly diagnosed patients,” says Stoffer. Some of these survivors-turned-educators are even willing to show a new cancer patient the physical result of a relevant surgery.
Can technology help?
You can also give patients advice whenever they need it using technology. Offering online assistance is fast becoming the norm. Grand River Cancer Centre uses McKesson’s Horizon WP Patient Portal, through which patients can find credible information regarding their diseases and recommended treatments, manage medications and side effects, and more.
“With technology, patients can go through the information at their own pace and on their own time,” says DeLenardo.
Redwood Regional offers a patient resource center, which also has terminals directly linked into the practice’s Web site, so that patients waiting for appointments can browse through and get the answers they need and can trust.
And that means all patients, including the older ones. “There’s a huge range, from 18 to 90-something, using it, says DeLenardo”
Paul notes that the Internet has changed the basic knowledge level of his patients. “Women who come in nowadays are pretty smart and tend to like the Internet,” he says. He encourages them to discuss with him what they’ve found. “I tell them the truth. If it’s a good peer-reviewed study, evidence-based, then great.” But if the Internet-culled information is just “people saying something is ‘good’ or ‘bad,’” he says, he’s careful to explain how following such advice could possibly interfere with a patient’s current course of treatment.
To be sure, the legitimacy of some Web sites can be questionable. “Sometimes they come in more confused,” says Hartigan. “They’re not always reading things that are up-to-date. If they come in that scared, it can be hard for them to hear what you’re saying.”
Some recommended sites to include as links on your own practice’s Web site include:
A positive result
There’s no argument that you work in a specialty that’s rife with fear and unknowns, but effective patient education is one of your best tools for a positive outcome. Indeed, your patients will look to you for help through the entire treatment cycle. As they learn, they change. “You watch them struck with a terrible diagnosis and how they navigate through it,” says Weiss. “When you educate someone properly, by the time they do make a decision they’re much more confident and will follow through.”
So you do the best you can. “You’re not going to get around the shock,” says DeLenardo. “If we provide a coping mechanism, decrease anxiety, and improve communication, then we’re doing our job.”
Shirley Grace is an associate editor on staff at Physicians Practice. She can be reached at email@example.com.
This article originally appeared in the September 2008 issue of Your Best Practice.