Narrative Inquiry in Bioethics

"We had to Google your diagnosis!"—that was one of the first sentences I heard when I received a call, 4 years ago, from my hepatologist at the time. In this call, she shared the pathology results regarding the 3 cm tumor that was removed from my liver through a liver resection—a tumor that was found by accident during a routine abdominal ultrasound. This was followed by, "You are the first case we have ever come across. It has a prevalence of 1 in 1 million." The tumor was benign and there was no need to worry, according to them. Epithelioid Hemangioendothelioma (EHE)—this is the complex name of my equally complex diagnosis. I asked my doctor to spell it for me the first time I heard it but now it represents two words that are always on the tip of my tongue.

Three months later, I did the first follow-up scan after the surgery and two new nodules showed up in the imaging. My former team of doctors sounded surprised and suggested that I should repeat the exact same surgery when I was still recovering from the first one, which obviously wasn't successful. Feeling confused and trying to avoid making an uninformed decision, I started doing my homework about this rare disease and discovered the light that would guide me through the next years—a foundation of patients who were given the same diagnosis as myself. It was this group of people and numerous scientific papers about EHE that made me realize that these seemingly harmless nodules were actually malign. This is how I learned that I have a cancer. EHE is considered to be a rare form of vascular sarcoma that arises from the lining of blood vessels, it is caused by a genetic malfunction, occurs especially among young adults, and the more common sites in which the disease usually manifests itself are the liver, lungs, and bones, but it can occur anywhere in the body.

Overwhelmed, but with the conviction that I knew more about my diagnosis than the doctors I was seeing, I decided to take my health into my own hands. I began the quest to find an expert in this illness, and through the EHE foundation I found out that there was someone in the UK who had seen several EHE patients for the last couple of years and he could offer me some feedback about which path to take in regards to my treatment options. Without hesitation, I scheduled an appointment with this specialist. In line with what my gut instinct was already telling me, this doctor didn't recommend having a liver resection performed again. It is believed that the more invasive the surgery is, the more inflammation it will create and therefore, there will be a higher chance of recurrence. Instead, he advised that I should opt for a less invasive procedure and recommended a procedure that was proving to be very efficient among other EHE patients. This procedure is named Nanoknife, or Irreversible Electroporation, and it is a relatively new and non-thermal ablation technique. This [End Page 188] procedure was not available in Portugal, but there was an interventional radiologist in London who could perform it. After feeling so lost, this appointment gave me a greater sense of control of my disease, and I finally felt hopeful and empowered.

With self-advocating comes the recognition of my rights as a patient, and it was during this time that I learned by myself that, as a European Union citizen, there are several EU legal instruments that support patients who need to obtain cross-border healthcare. As a rare cancer patient who needs specialized treatment in another country, I found out that a Portuguese decree-law could be applied to my case. Since this treatment couldn't be provided to me in Portugal, I had the right to get access to it in another country, and the costs associated with this type of medical assistance should be covered by the Portuguese National Health System (NHS). Since I would need prior authorization from the Director-General of Health to move...