In the words of Dr. Rodney Falk, “Amyloidosis is a paradigm for thinking outside the box.” The disease can be challenging to diagnose, even for the most seasoned physicians. In the case of the patient, the unknown, with all of its potential disease symptomatic variables, can make for a daunting situation. Developing one’s “patient voice” can seem unduly intimidating. Advocating one’s position may come natural to some, but terrifying for others, especially when the physician is viewed as the expert. Additionally, many patients may find it difficult to translate their feelings without having a medical vocabulary.

With regard to effective collaboration between physician and amyloidosis patient, there have been many success stories, but unfortunately numerous failures as well. One hereditary amyloidosis patient shares a story where after several years of increasing symptoms, and failed attempts with multiple physicians, he finally saw a cardiologist who went out of his way to put the patient at ease, telling him that he wanted to make it perfectly clear that the patient was of utmost importance and that he was being listened to. This was effective in allowing that patient to “find their voice,” with a resulting diagnosis being made shortly thereafter.

Another amyloidosis patient, a woman with AL amyloidosis, had to endure a nine-year journey of increasing symptoms prior to her diagnosis. “I was seen by nine doctors of various specialties, including hand surgeons who performed multiple carpal tunnel release surgeries, an electrophysiologist who diagnosed an unexplained autonomic dysfunction after a tilt table test, gastroenterologists who addressed three separate gastro-intestinal bleeds, multiple cardiological specialists who addressed atrial fibrillation, enlarged heart and diastolic dysfunction, and then finally a cardiologist who listened to my long list of symptoms and reviewed my relevant test results and medical history. This cardiologist maintained a sense of curiosity, resulting in him ordering a “free light chain” assay, leading to additional tests that ultimately confirmed a diagnosis of AL amyloidosis.” The patient states that “the cardiologist listened to me, was not dismissive of my complaints, and did not give up on me. It was this man’s persistence and curiosity that led to my diagnosis and saved my life.”

These two patient stories illustrate how imperative it is that the physician fosters an open and supportive avenue of communication such that the patient can “find their voice” and effectively function as their own advocate. Per Dr. Falk, “…you have to listen to the patient, because the patient is telling you an awful lot.” He goes on to say “…when that person comes through the door, they’re the most important person in the room and not the physician.”

There are several straightforward but effective catalysts that the physician can use to help the patient find their voice:

• Empower your patients. Some patients are intimidated by physicians and feel the power is entirely in their hands, so in order to foster better communication, give your patients a greater sense of participation in their care. This means making the patient feel important. Again, per the words of Dr. Falk, “…when that person comes through the door, they’re the most important person in the room and not the physician.”

• Listen without interrupting. According to the Journal of General Internal Medicine, patients on average have 11 seconds to explain the reasons for their visit before a physician interrupts. However, if the doctor lets them speak longer, they will tell you what brought them into the doctor’s office.

• Seek and provide information. Knowledge is power, both for the patient and the physician. Patients need to be able to effectively explain their situation to the physician and also have their situation explained back to them in terms that they can understand. This may include asking clarifying questions and allowing the patients to write down any questions that they may have, or any information that they may feel is important.

In summary, with a disease such as amyloidosis, it is imperative that a diagnosis be made in a timely manner, making “the patient voice” all the more critical.

Sources

The Power of the Patient/Physician Collaboration, https://mm713.org/the-power-of-the-patient-physician-collaboration/, Dec. 7, 2021`

6 Ways to Improve Patient Communication, https://www.jotform.com/blog/patient-communication/, March 23, 2023