The Involved Interpreter
Helping patients understand their own disease not only offers peace of mind, but also allows them to see the ongoing value of pathology
Timothy Craig Allen |
“Patient-centered pathology,” to me, has a very broad definition; it can mean any interaction between a patient (or family member) and a pathologist. A pathologist who speaks with a patient on the phone to describe the pathophysiology of a disease is practicing patient-centered pathology. A pathologist who sits at the microscope with a patient, describing the characteristics of a tissue, is practicing patient-centered pathology. And a pathologist using telemedicine to show and describe a tumor to a patient, explaining its molecular features and how they influence treatment choices, is an excellent example of practicing patient-centered pathology.
I practice patient-centered care in several ways. On some of my pathology reports, I put a comment describing the patient’s situation in layperson’s terms. I explain briefly what a pathologist is, and invite the patient to speak with me on the phone about their case – or even to come by and look at their slides with me and discuss the disease pathophysiology. Sometimes, I use telemedicine to discuss and clarify the details of the patient’s diagnosis with them and their family. In an anatomic pathology diagnostic management team (DMT) conference, I work with my colleagues in radiology, oncology, surgery, and radiation oncology to speak with patients and families about disease presentation, diagnosis, therapy, expectations, and follow-up. It sounds like a lot when written down – so imagine how much it must be for patients to handle without our help! This “real-time tumor board” actually only takes about 10 minutes most of the time, and it provides our patients and their families with facts, clarity, understanding, and a plan. Ultimately, it provides them with a very important peace of mind.
What difference does it make?
In my opinion, it is too early to make definitive statements about the difference this type of pathology practice makes to our patients’ outcomes. As we evolve a more patient-centered approach to the pathology we provide our patients, we will be able to generate and assess much more data – and then we’ll be able to make robust determinations regarding patient value. Such information is going to be extremely important, because outcome changes, cost savings and patient satisfaction are quickly becoming the indicators that drive payment for the new patient-centered behaviors we are developing.
That said, some things are intuitive, and we certainly can’t deny that there are plenty of anecdotes that indicate increased value. It sounds counterintuitive, but patient-centered care – especially using telemedicine – does not require the patient’s physical presence at every doctor’s appointment like our traditional methods of medical practice do. With a “real-time tumor board” or anatomic pathology DMT conference, the patient and family can sit in the comfort of their own home and speak with a pathologist, either alone or with other members of the healthcare management team.
Anecdotally, patients with whom I’ve spoken have enthusiastically expressed that they value an approach to pathology that prioritizes them. A pathologist who speaks with a patient can often provide the patient with a sense of clarity and comfort that – although impossible to label with a dollar amount – is nonetheless extraordinarily valuable at a time of heightened anxiety, fear, and stress. With a telepathology conference, a patient can essentially combine four or five doctor appointments into one 10-minute telemedicine experience, saving days or weeks of time and avoiding travel and scheduling delays. Finally, there is a strong sense that direct pathologist interaction reinforces the patient’s understanding of the pathologist’s role – and thus, their understanding of the value of pathology.
Stories from the front lines
Let me share three anecdotes that I think truly illustrate the importance of patient-centered care. The first concerns a patient who lives out of state, and who was thrilled to be able to speak with the pathologist and radiologist about his tumor and the proposed therapy for the specific diagnosis. He was delighted to be able to speak with his healthcare team from his home, hundreds of miles away from his diagnosing and treating physicians. To him, it was an office visit with the pathologist in his own living room.
In another example, a cancer patient was very worried about receiving treatment, but after discussing her options – chemotherapy, molecular, and immunotherapies – she understood why it was best for her to receive the specific therapy that had been suggested. She was extremely thankful to the team, including the pathologist who described the cancer in detail, for having the telepathology discussion that provided her with better insight and peace of mind.
My third example regards a patient who had received a transplant and was concerned about whether or not his children had a genetic predisposition to the same disease. He had tried for some time to ask about the likelihood of such a predisposition, but had been unable to get a clear answer to his question. After some discussion with the pathologist and another subspecialist physician, the patient was relieved to learn that his children were at no increased risk. He made sure we knew how extremely grateful he was that he could sleep better with the knowledge that his children were safe.
Out of the shadows
I would strongly advise other pathologists to consider patient-centered discussions. It’s easy to start; why not put on your report who you are, explain what a pathologist is, and let your patients know that you are available to speak with them about the diagnosis or show them their slides? Telemedicine is another arena where even small changes can make a big difference – but when becoming involved in that, you must be careful to work with a knowledgeable IT person who can help you to quickly develop a thorough understanding of the technology needed for a seamless conference.
Particularly in today’s world of changing healthcare payment models, an increasing regulatory and governmental presence in payment decisions, and increased patient confusion around new therapies (especially molecular therapies and immunotherapies for cancer), it is necessary to clarify who we are and what value we provide to our patients. Direct discussions with patients will not only provide them with a better understanding of their diagnoses, but also emphasize our value – which, in turn, improves the likelihood of appropriate payment for the vital services we provide as part of the healthcare team. Pathologists can no longer afford to be in the shadows, ignored, or misunderstood.
To me, the future of medicine is not merely the development of better diagnostic tools, a better understanding of disease processes, or better therapies. The future of medicine will also require our ability to deliver these new and evolving therapies quickly and efficiently to our patients, while educating them about the new tests and treatments. If a patient cannot travel to the hospital, or does not clearly understand the diagnosis or the need for a specific treatment and so does not make the effort to adhere to it, then the best therapy in the world is useless to that patient. Yes, it presents a challenge and, in my opinion, it is also a powerful reason to develop patient-centered approaches to diagnosis and treatment. As curators of diagnoses and guides to treatment and recovery, we pathologists should – or rather must – play a central role in patient-centered care models.