One of my relatives has metastatic Cancer. He has several tumors in his body, one of which measures five centimeters. Two chemotherapy regimens have failed to beat back the disease. Yet, when he’s not in treatment and has no pain, he is able to go about the daily activities of his life, even going to work. If it wasn’t for his hair loss due to the chemotherapy, you wouldn’t even know he is seriously ill.

After consulting with his siblings and loved ones, he recently entered a Phase 1 Clinical Trial. The clinical trial is testing an immunomodulator, based on the theory that the body’s natural immune system can be recruited to act against the cancer cells.

My relative asked me to accompany him to his initial appointment with his Oncologist, who practices at a cancer institute. The primary purpose of the visit was to obtain medical clearance to participate in the trial. As a well-informed caregiver, I expected the following from this visit:

• The clinical trial would be explained in depth, from A to Z.
• Both the risks and benefits of the drug to be used would be laid out for us.
• A description of services the center offers through the length of the trail would be provided.

When we were escorted into the exam room, a research nurse assigned to the trial described the treatment regimen. He received a full account of the frequency of the treatments and possible side effects. When the oncologist joined us, both she and the nurse repeatedly emphasized that they did not know if the treatment would be effective in treating my relative’s cancer as the drug had been approved by the FDA only for the treatment of melanoma (not his type of cancer). I thought it important for my relative to understand the drug’s effectiveness for melanoma in order to make a well-informed decision on whether or not he wanted to proceed. The oncologist told us that it prolonged life by three months in patients with melanoma.  For most cancer cases, that is considered success. But in my relative’s mind, success equals remission; failure, for him, is weeks or months. It bothered me—and bothers me still—that this gap in what “success” looks like was not openly discussed between patient and physician. Studies have shown that both patients and physicians overestimate the benefits of a treatment and underestimate the risks possible.

Another discussion that I felt should have occurred—but didn’t—was around Palliative Care. Prior to the visit, I had spoken to my relative about palliative care for pain management if his cancer began to affect his organs and thought he should discuss it with the oncologist. Prompted by the Choosing Wisely® recommendations by several specialty societies (American Academy of Hospice and Palliative Medicine, American College of Emergency Physicians, Society of Gynecologic Oncology, American Society for Radiation Oncology) regarding the benefits of palliative care and its earlier implementation, I asked the oncologist if it would be appropriate to schedule an appointment with a palliative care physician now, while my relative was still pain-free. The oncologist and nurse researcher both stated emphatically that the oncologist can manage his pain when it was at that stage and there is “no need for palliative care” This statement was not congruent with studies that show that palliative care for some cancers like lung cancer actually prolongs life six months longer than a treatment cohort.  If I had crossed a line by asking the oncologist about the effectiveness of the treatment earlier, at this point I was persona non grata.  For the rest of the visit, she addressed only the patient and ignored me.

The outcome of the appointment was disappointing on many levels. Without seeing the whole picture, it is difficult for patients and their loved ones to make wise choices – especially in matters that may impact the patient’s quality and length of life. In this instance, we were not given a full explanation of the full ranges of what success would mean if he did participate in the Phase 1 clinical trial nor were we offered information about palliative care, an evidenced-based intervention that might have a better chance of prolonging his life than an experimental drug designed for a treatment of a different type of cancer.

Additionally, without palliative care services, I doubt my relative will be prompted to have a conversation about what medical care services he wants and doesn’t want as his cancer advances. It’s hard to make the right choices in his care without full information on treatment and resources like palliative care that might provide comfort to my relative that pain would be addressed by a specialist in this area.