Jennifer Hunt, MD, can count on one hand the number of patient consultations she’s given. “Four or five” in the past few months, says Dr. Hunt, associate pathologist, Massachusetts General Hospital, Boston, and associate professor of pathology, Harvard Medical School.
This is not a big number, no matter how hard you squint. Not enough for an outcomes study, or for creating new practice guidelines, or for Dr. Hunt to make grandiose claims about her vast experience in talking to patients one-on-one about their pathology results.
That handful could seed something much larger, however. For starters, those patients have transformed Dr. Hunt from a skeptic to a believer in the idea that pathologists can, and should, spend time with patients.
Dr. Hunt has designed a research project with an oncologist colleague at MGH, Lori Wirth, MD, to test the value of this. She’s helped the CAP Foundation and Transformation Program Office develop a co-sponsored training program—the pilot took place at CAP ’10 in September—for pathologists to practice meeting with a patient (a standardized patient, in this case trained to act the part of a 42-year-old woman who’s been given a diagnosis of breast cancer). Dr. Hunt also spoke about patient consults as part of the video presentation at the transformation plenary luncheon at the same meeting.
But it’s that smattering of cases on which Dr. Hunt rests her convictions.
She freely admits she had a flimsy opinion of patient consults at first, when the CAP broached the idea as part of its current transformation efforts. “I was a huge skeptic,” she says. She saw little need for such interactions, and felt no one—patients, clinicians, pathologists—would want it, despite rumblings in the profession about the need to return residents to clinical situations during their training. “I just didn’t see this at all,” says Dr. Hunt.
Then she thought about it a little more. Slowly, she warmed to the idea. Pathologists are unique, she says. “We can offer an unbiased point of view, which no treating doctor really has. No matter how you slice it, they have a bias,” she says. “But we don’t have any skin in the game.”
As her thinking evolved, she decided to create the aforementioned study, which is still in the planning stages. In the meantime, she and Dr. Wirth, who is the medical director of head and neck oncology and assistant professor in medicine, MGH, have begun informal patient consults to gain experience. Think of them as intelligence-gathering sorties, to find out what sorts of questions patients might have, what scenarios might unfold, and how Dr. Hunt (and other pathologists) might be most helpful.
Dr. Wirth selects the patients based on clinical need. One patient, Dr. Hunt recalls, had questions about a margin. “He and his wife were just so concerned about a margin that had been called positive,” she says. Dr. Wirth, who is also assistant professor, Department of Medicine, Harvard Medical School, asked her to meet with the couple and “reassure them that this was a positive margin, and it wasn’t fake, and to show it to them.”
Patients ask good, hard questions, says Dr. Hunt. If patients are interested, she’ll show them their slides on an iPad. (“It’s so intimate—they can point to things, ask questions, while you’re sitting next to them,” she says.) As they meet with Dr. Hunt, “The cancer goes from being nebulous and theoretical to, ‘Oh, I see that cell. I can see what you called cancer.’ So it becomes much more of a reality in a good way—like the unknown was more scary than the known.”
When Dr. Hunt first approached her with the idea of the study, Dr. Wirth could think of no reason to hesitate. “I thought it sounded great,” she says.
In her near-decade of caring, at the attending level, for patients with head and neck cancers, Dr. Wirth has seen plenty of patients struggle with many aspects of the initial diagnosis and complex, toxic treatments. “After seeing patients for the first time in our clinic, we send them away with their heads spinning,” she says.
Oftentimes patients may find it difficult to understand even the basic issues of their illness and will return for more information, she continues. “So when we go over the results of their biopsies or surgeries regarding the path, we’ll tell them, ‘This is squamous cell carcinoma of the head and neck; these are the kinds of cancer that most frequently arise in the lining of the mouth and throat.’ And when I say those things,” says Dr. Wirth, “I feel like what I’m saying is very understandable.” Nevertheless, she finds her explanations don’t always sink in with her patients.
Oncologists and surgeons know their way around pathology reports, of course. “I can go over a path report with a patient and say, ‘This is what squamous cell carcinoma is. This is the point in the report where they’re pointing out that there is a very close margin in this part of the specimen,’” Dr. Wirth says. And certainly she can look at normal mucosal epithelium and a squamous cell carcinoma and identify which is cancer. “But as a medical oncologist,” she continues, “I can’t look at pathology slides and speak to what the slides are showing with any real understanding of what I’m looking at.”
So what? Why should they bother explaining their work to patients?
The standard spiel might go something like this: The better patients understand their illness, the better partners they’ll be with their health care providers.
Lest that sound like something dreamed up by a PR committee, Dr. Wirth explains what she sees happening in her practice. Her patients often have lengthy courses of radiation and chemotherapy. They might also have surgeries, sometimes with complicated reconstructions. “Radiation and chemotherapy, in and of itself, is very intensive therapy, and people become quite sick, and quite disabled and debilitated by the end of treatment,” she says.
She’s found that the patients who cope best are the ones who are engaged with their treatment. These are the same patients who ask questions about their illness and treatment options. Patients who are more passive, she says, tend to struggle more with their treatments and frequently must be hospitalized.
Dr. Wirth also suggests pathologists can help patients address the “why me” aspect of cancer. With oral/pharynx cancers especially, patients struggle to grasp the HPV-related component of their illness. “Everybody sort of learns in junior high sex ed that HPV is a sexually transmitted disease. And then all of a sudden a patient at 55 years old is sitting there in a clinic with his wife, and people suddenly think, ‘Who gave this to whom, and how did that happen?’”
While STD-related HPV has little bearing on an HPV-associated head/neck tumor, “It’s very, very difficult as a clinician to undo those associations from junior high sex ed,” Dr. Wirth says. Having pathologists talk to patients might help.
Finally, she says, pathologists can use visuals to help patients cut through the medicalese that accompanies most diagnoses.
Dr. Hunt clearly believes this can help patients. Dr. Wirth sees that it does.
What of the patients themselves?
Karen Chelcun Schreiber’s mother died of stomach cancer at age 52. When her brother was diagnosed with stage IV stomach cancer at age 56, Chelcun Schreiber became suspicious as well as concerned, despite reassurances she’d received over the years from her physicians. “All my life, doctors have been saying to me, when I talk about my family history, ‘Oh, don’t worry about it—stomach cancer’s really rare,’” says Chelcun Schreiber, 52, of Madison, Wis. “They just kind of blow you off when you talk about stomach cancer.”
Her brother’s diagnosis made her wonder if there was a hereditary form of the disease. There is, of course, and her own research soon led her to hereditary diffuse gastric cancer, which involves a mutation in the CDH1 gene. Chelcun Schreiber urged her brother to undergo gene testing during his treatment at MD Anderson. He did, in January 2008; that March he learned he had the mutation.
Chelcun Schreiber herself received a positive gene test result two months later. Other family members then sought testing, and the bad news poured in: Her other brother was positive. Her son was positive. Her niece and nephew—the children of the brother with stage IV disease—were positive.
Just as shocking to Chelcun Schreiber was the treatment for those with a positive gene mutation. “The only way to prevent stomach cancer from developing is to have your stomach completely removed,” she says. That led her to MGH. Local physicians, she said, didn’t seem, to her, to be able to address the complexities of HDGC.
She also learned how critical pathology was to patients who were having prophylactic gastrectomy: The entire stomach would need to be mapped. When she asked her surgeon at MGH, Sam Yoon, MD, who would be doing the pathology, he introduced her to Gregory Lauwers, MD, director of the Division of Surgical Pathology and GI Pathology Service, MGH, and associate professor, Department of Pathology, Harvard Medical School. “I wanted to ask him exactly what they’d be doing, and if they’re going to do all the things the research says should be done,” Chelcun Schreiber recalls.
She and Dr. Lauwers initially conversed through e-mail. At the time she was still considering having her surgery in Madison, so she asked Dr. Lauwers what questions she’d need to ask her doctors, including the pathologist, if she received her care locally.
Later, after her surgery at MGH, she had a lengthy consultation with Dr. Lauwers. “He explained everything to me, and he showed me the slides,” she says. She learned that cancer was indeed developing in her stomach, and she felt reassured by her decision to remove it prophylactically. She also felt more confident after Dr. Lauwers explained his work and why she’d require no further treatment. “Now I don’t wonder, ‘Did they really get it all?’” she says.
“He was very patient with my questions,” she continues. “He explained things to me in a language I could understand, though I’m sure when scientists talk to each other they speak in a different language that the average person like me couldn’t understand.”
Chelcun Schreiber is being modest when she calls herself “average.” She and her family have founded a nonprofit organization, No Stomach For Cancer (www.nostomachforcancer.org), and successfully lobbied to have November designated Stomach Cancer Awareness Month in the United States. (Dr. Lauwers is on the group’s scientific advisory board.)
She’s also unusual, perhaps, in the regard she has for pathologists. When patients seek physician ratings, she asks, why don’t they bother asking about pathologists? “The work they’re doing is really important.”
But she’s hardly alone when she talks about her experiences as a patient. “I know doctors can’t always be accessible to their patients,” she says. “I know doctors don’t always want to answer our questions.”
That matter-of-fact acceptance should scare health care providers who pride themselves on patient satisfaction. And it perhaps bolsters Dr. Hunt’s sense that pathologists would be mending a rift if they met with patients.
Chelcun Schreiber is a believer. “Things get lost in translation,” she says. “It’s like when you want to ask your doctor a question, and you call the clinic, and they say, ‘I’ll let you talk to a nurse.’ And the nurse will talk to the doctor, and the doctor will give her a response, and then somebody will call you back. And then you’re like, ‘That’s not really what I wanted to know. And what about this?’ And so much gets lost in between.”
That’s why she’s sold on talking to pathologists. “It’s reassuring to get information from the person who’s doing the work. If the answers are good, or bad, or even if they just don’t know for sure, I like to get my information from the most direct place.”
While patient consults might seem like a tectonic shift, a handful of patients is only the earliest rumbling of change. “Our experience is so limited at this point, we’d be silly to think we know everything,” Dr. Wirth says. She and Dr. Hunt are thus unsurprisingly—and refreshingly—free of firm answers when asked by colleagues and others how this might develop.
When is the best time for a pathologist to meet with patients? Is Dr. Hunt and Dr. Wirth’s current approach the best? “We don’t think so,” says Dr. Hunt with a laugh. Maybe it’s better for pathologists to meet with patients before clinicians have given treatment recommendations. In this scenario, pathologists could talk to patients about possible options and why clinicians might make a specific recommendation.
Dr. Hunt says she’s learning that some times are harder than others to have patient consults. Most patients are shell-shocked on the heels of receiving a cancer diagnosis, for example, and can’t absorb anything beyond the initial news. It’s also hard to talk once treatment decisions have been made. “There seems to be a little window in the middle when they’re ravenous for information,” she says.
Won’t patients be overwhelmed? One patient’s wife recited her husband’s pathology report back to Dr. Hunt. When Dr. Hunt commented on her knowledge, the wife started to cry, Dr. Hunt says. “She said, ‘I never wanted to know cancer this well.’”
Dr. Hunt says she’s been surprised by patients’ efforts to learn about their disease. “They’re really searching and seeking.”
If it’s information they want, shouldn’t pathologists provide it, asks Dr. Wirth. Even highly pedigreed Web sites aren’t going to provide specific answers about a specific patient’s diagnosis, she notes. At the opposite end of the spectrum, patients may unearth all sorts of crazy “facts” about their illness. “I’ve seen it plenty of times,” Dr. Wirth says.
Will looking at images of their disease disturb patients? Dr. Hunt has mixed feelings about this. “I have to figure out if this is something I should worry about or not,” she says. Some patients might indeed be upset. But maybe that’s OK, she says. “Cancer is bad.”
In Dr. Wirth’s experience, patients become terrified when they’re told they have cancer. Physicians are unlikely to compound that terror by sharing more information, she says; instead, she finds, helping patients understand their illness helps them gain control over that terror. She draws a parallel to the now-accepted practice of helping patients deal with end-of-life issues. “We don’t do those patients any good by sweeping those things under the rug,” she says. “So I would imagine that having patients look at the actual histology of their tumors is not going to increase their horror of cancer. But it might help them come to terms with it.”
What should a pathologist say when the patient asks for treatment advice? As Dr. Hunt points out, they can’t help but ask, even if they know, intellectually, that the pathologist isn’t the treating doctor.
“I’m variably comfortable with that,” Dr. Hunt says. Thyroid cancer she knows “inside out. I can answer those questions.” Other cases are more subtle, more practitioner-dependent, she says. “In those cases, I’d refer them to the clinician. Or, we might talk about why you might choose one approach and not the other, in generic terms.”
One patient was reluctant to have chemotherapy despite the clinician’s recommendation. The patient’s wife asked Dr. Hunt if her husband should have chemotherapy, and immediately followed with the statement, “I know you can’t answer that.” Then, says Dr. Hunt, the wife said, “But just answer it anyway.”
Pathologists have to be prepared for those questions if they meet with patients. It helps, she says, if the pathologist and clinician are simpatico. “You have to be confident in them, and they have to be confident in you. And you have to be able to deal with those ambiguities and uncertainties together,” says Dr. Hunt.
Dr. Wirth, so far, has prepped Dr. Hunt, letting her know what questions the patients have and what treatment she’s recommending. With the aforementioned patient, says Dr. Hunt, “She [Dr. Wirth] said, ‘I don’t want you to persuade him to have chemo. That’s not what I need. What I need is for you to show them why I recommended it, and then they can make their decision.’”
But pathologists don’t get paid for this! (Yes, that’s a comment, not a question.) “Everybody says this to me,” says Dr. Hunt. “My answer is, if I do it right, maybe I will get paid for it someday. Because the value is there.”
With these informal consults, Dr. Hunt is neither providing patients with a separate, user-friendly pathology report nor writing notes in the charts, though she says the latter is probably a good idea. “Because I’m seeing the patient, there should be some kind of documentation of the conversation. I guess I’m going to have to go to those electronic health record training sessions I’ve been avoiding, about how to document things in charts,” she says, laughing.
Is this for everyone? The “yes” argument is that any patient can become more knowledgeable about his or her health care. “It’s not about the patient being smart; it’s not knowing nothing or knowing everything about your disease,” says Dr. Hunt. “It’s the idea that anyone could benefit from knowing more, and working more closely with their clinician—which includes their pathologist.”
On the other hand, some patients don’t want to be more engaged with their care, Dr. Wirth concedes. “They say, ‘I don’t want to know anything about this. Talk to my wife.’” For such patients, there may be no additional value to meeting with a pathologist.
Will this launch a turf war with clinicians? Maybe. Or, patient consults could simply cover the no-man’s-land between specialists. “This is what we’re good at,” says Dr. Hunt. “We integrate the clinical, the reports, data from the chart. We pull information together. We’re the ultimate teachers. We can see shades of gray. We’re not dogmatic. We can tell patients about the different opinions they’ll hear. We can inform them, instead of telling them.”
What happens when the physicians disagree? Doctors on a multidisciplinary team don’t necessarily need to speak with one voice, Dr. Wirth says. At times, the pathologist may say a margin is close, and the surgeon disagrees. A surgeon and a medical oncologist may have differences of opinion about the best treatment approach.
In such scenarios, physicians need to agree that they disagree, then figure out how to tell that to patients. “We need to let them know that we’re presenting complex information, and that we’re presenting different viewpoints, each with pros and cons,” says Dr. Wirth.
Do pathologists have the right personality to interact with patients? Dr. Hunt neatly dispatches this concern. Many pathologists, she says, pursued pathology despite the fact they wouldn’t deal with patients. Pathology was, in a sense, a sacrifice, not an escape hatch for misanthropes. That’s not true of every pathologist, and that’s fine, says Dr. Hunt. But it’s time to recognize that pathologists might want to meet with patients. “A lot of pathologists say, ‘I was almost a surgeon, I was almost a psychiatrist, or a pediatrician.’ That says a lot,” Dr. Hunt contends, noting it’s the rare clinician who can recount an I-was-almost-a-pathologist tale. “We do have that clinician gene.”
She doesn’t forget her own skeptic’s roots, however. Her upcoming research project should provide something for the disbelievers to mull over. “I want to prove this to the skeptics—to the former me,” she says.
But based on anecdotal experience, Dr. Hunt is convinced. “This is the right thing for us to do. It’s amazing. I can’t believe we didn’t do it before.”
Karen Titus is CAP TODAY contributing editor and co-managing editor.
CAP members who would like a DVD of the CAP ’10 transformation plenary should call 800-323-4040 or send the request to firstname.lastname@example.org.