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The Case for Patient-Centered Pathology: Pathology Reports and Personalized Tumor Boards

In this interview, Timothy C. Allen, MD, JD, FCAP, director of surgical pathology at the University of Texas Medical Branch in Galveston, Texas, shares what he thinks patients should know about pathologists and how speaking with a pathologist can help allay some of the fear and uncertainty around a diagnosis.

What do you want patients to know about the role of pathologists in their care?

We want patients and their families to know who we are and how we provide their care to them. They may not see us, but this is one way of making it known that we are part of their care team. We’re helping them with their diseases, cancers, infections. Beyond that, we want to reach out to our patients so they know we’re available to talk about their cases. They can look at their slides and see their disease under the microscope while we talk to them about it. As physicians, that’s the consultative role we need to play so we can provide as complete of care to our patients as possible.

Why is this work so meaningful for you?

As a pathologist, speaking with my patients is always a privilege. It’s a total obligation to our patients to share their disease process in a way that helps avoid confusion and eliminates questions. We work with their primary care doctors and oncologists to give them a complete picture of their disease process and hopefully reduce the fear that exists.

What are some of the emotions you see in patients who are awaiting a diagnosis?

The fear comes from not knowing, mostly. There’s of course the fear of having been diagnosed with a serious disease. There’s also fear that we as pathologists can address of helping people understand their disease. When people are waiting for a biopsy diagnosis, one doesn’t have to be a pathologist to understand this. Everyone who is a patient or a family member of a patient knows the waiting is an awful period when you’re worried about a diagnosis. Some diagnoses sound very bad and maybe they’re not. They may be confusing. It’s up to us to explain it in a lay person’s terms of what to expect in general. It helps a lot of patients and families to see the tissue under the microscope and give them a sense of control over what’s going on.

People deal with diagnoses differently. People need to feel a sense of control even over the bad things in life. We can help by sharing our understanding of the disease, reviewing their slides under the microscope. We can allay fears and give them back a sense of control over their disease.

What's the value of the mini-tumor boards you have with patients and other clinical partners?

Talk about personalized medicine—this is a personalized tumor board. It’s a personalized diagnostic management team visiting via Skype. We can have a HIPAA compliant Skype session that lets us get the pathologist, oncologist, radiologist, and others in the discussion with the patient in real time along with family and talk about the whole process. We talk about how we’re going to consider treating them. All this is part of the patient’s diagnostic puzzle. It helps the patient to see that the whole team is right there with you.

What has the response been from patients?

This is a new concept even for patients. Some may not know it’s available. We need to let them know we’re here and we don’t bite. Once we get past that hurdle, the response is very positive. One patient told me we got a year’s worth of work done in 10 minutes. Otherwise, you have to go from one doctor’s office to the next. One person may be booked for the next two months. We can sit down in 10 minutes and go through the whole history of his disease and potential follow up for the future. People who are diagnosed with a serious disease are less mobile. If it’s not necessary to have them go here and there, let’s have them sit in front of their computers at home and get this done from a distance.

How would you describe the language in most pathology reports? How do we simplify it for patients?

By necessity, we have to use the best diagnostic terminology for our patients, so we use a lot of “doctor speak”—words the average non-physician or non-pathologist has a hard time grasping. We can put in the comments a short paragraph in layman’s terms. It won’t be a complete picture, but it will be a good understanding of what one might say to a patient face-to-face if you’re explaining the disease process to them. (See example report.)

I frequently diagnose adenocarcinoma of the lung. I might put language in the comments such as “Lung adenocarcinoma is a primary cancer of the lung. It’s the most common lung cancer.” I might mention potential treatments. I may mention the potential use of molecular markers to help determine the best therapy. I’ll end with a statement about who I am and ask them to give my office a call if they’d like to discuss their case. “Come by and see the case for yourself.”

Why is it helpful to put patient-friendly language at the beginning of a pathology report explaining who you are and your role in the patient's care?

It does it in a relatively uniform way. I don’t want to have to reinvent the wheel every time I write one of these. I want to use the best language and not have to rethink it every time I sign out a case. It points out who we are in a way that welcomes their phone call or visit. Patients routinely think “I don’t want to bother my doctor,” then they worry and don’t understand their diseases. I want to be able to sit with them or talk on the phone and conduct a personalized tumor board with them so they have a thorough understanding of their workup, therapy, and prognosis.

There are challenges to pathologist interactions with patients. Address the reluctance among some in the profession and describe how you propose overcoming those barriers.

There are two situations where pathologists might be reluctant. It’s a fact that a pathologist’s time is very valuable and we need to be paid for the time we spend. Just as our clinical colleagues who are not pathologists get paid for consultations, we also should be paid for consultations. That being said, the most practical way of looking at this is that we need to begin this process and show the value of it; then payment for our time will be forthcoming. Waiting for the CMS or the insurance company to pay us for something we haven’t done is probably futile.

The second reluctance is that because of pathologists’ training and experience over the years, we don’t spend a lot of time talking to patients. Exceptions would include cytopathologists and transfusion medicine teams in the blood banks. They see patients on a daily basis, but a large number of pathologists do not. It would take a realignment of our thought processes. From my experience, talking with patients is a delight. If they have questions we can’t answer, we refer them to our other colleagues. Sitting across from a patient discussing their case is very satisfying.

If a patient sits down to talk with you or with her oncologist, what are the top questions she should ask about her diagnosis in layman's terms?

The fear of the unknown is something we can help diminish for our patients. I’d suggest asking the following questions:

  • What is my disease?
  • How have I been worked up? (This includes scans and biopsies.)
  • What does my radiology and pathology look like? What do my cells and tissue look like and what does that mean?
  • Is there tissue invasion?
  • What’s the recommended therapy for me or my prognosis? What can I expect next?