As many readers are undoubtedly well aware, the doctor-patient relationship has a place of profound significance in health care. The critical importance of this relationship becomes magnified in oncology, where life hangs in the balance, and fear hangs over every soul that walks the invisible line between life and the everlasting night of undrawn death.
In the winter of 2015, a needle biopsy was performed on a mysterious tumor in my neck. Following this procedure, my otolaryngologist told me emphatically that it was “not cancer.” When I saw him for a follow-up, he seemed concerned, and so I asked him if the tumor was definitively benign. He confessed that he wasn’t entirely certain, as it is not unusual for needle biopsies to fail to extract malignant cells despite a tumor actually being malignant. Ultimately, the tumor did end up being malignant, and this lack of honesty severely undermined in a matter of minutes, what had previously been an excellent long-standing doctor-patient relationship.
Following the resection of this tumor, I transferred to a different cancer institute — and was forced to wait for months — as their pathology department attempted to come up with a diagnosis. Embarrassed that they were unable to arrive at even so much as a lineage, a senior pathologist lied to me over the phone and invented an imaginary diagnosis, which I learned of several days later when meeting with my oncologist.
What are we to make of an institution that doesn’t even feel the need to fully disclose the pathological findings of one’s own case? When I attempted to send slides to outside institutions so as to obtain additional opinions on this unusual disease, this department then attempted to deceive me into believing that there was almost no material left in the tissue block.
Following this remarkable display of paternalistic medicine, I asked my surgeon’s nurse whether I was to be catheterized for a liver biopsy. In response to this perfectly legitimate question, she replied, “I’m really not supposed to say this, but what difference does it make? You’re going to be under general anesthesia.” When I went to relieve myself after the surgery and saw that there was blood in the toilet, my question was finally answered. This patronizing attitude can breed bitterness and distrust, as patients deserve honest answers to honest questions.
Another example of how a lack of disclosure can have grave consequences, is when patients aren’t warned of the dangers of common long-term chemotherapy side effects. One of the most common and disturbing of these is post-chemotherapy cognitive impairment, also known as chemo brain.
I vividly remember my oncologist’s nurse sitting down with me before starting chemotherapy and briefing me on what to expect. However, she only addressed the common short-term side effects such as mouth sores, nausea, and vomiting. The nurses that administered the chemotherapy would also periodically joke about chemo brain, as if it were limited to a couple of days of spoonerisms and forgetting where you parked your car. I may never know whether they were being deliberately deceitful, or if they are simply ignorant of the content of their own pharmacy.
When I attempted to discuss my concerns regarding this mental fog with my oncologist, he said that chemo brain was no different than if he had a quarrel with his wife and then had trouble concentrating at work the next day — a ludicrous and absurd analogy. When I persisted in attempting to discuss my concerns with him, I was met with a barrage of derision, sneering and snarling.
This fog can last for a few weeks or months — and then disappear forever. However, chemo brain can also last for years as lintrollerderby writes in a forum on breastcancer.org:
I had four rounds of Taxotere and Cytoxan and can say that it definitely caused (seemingly) permanent chemobrain. I’m five years out and still have long-term loss of my short-term memory which was excellent pre-chemo, inability to focus, inability to multitask (used to be a strong suit of mine), frequent word drop issues, etc. I’ve been upset for years that I have continuous issues. It’s one thing if I’d given informed consent, but it was never mentioned to me that this might never go away.
During six months of CHOP chemotherapy, I never had a single mouth sore. But ten months after my last cycle, I still occasionally experience a little chemo fog. And as is the case with nonconsensual physician shadowing, failure to disclose potentially debilitating long-term chemotherapy side effects effectively turns the patient into a commodity, while also constituting an egregious violation of medical ethics. Few realize that when chemo brain is particularly persistent and severe, it can force people to abandon their careers.
In an article in the November 27, 2012 issue of Science Daily titled “‘Chemo Brain’: Researchers Identify Physiological Evidence of Chemotherapy-Induced Changes in the Brain,” the authors write how joint PET/CT scans have demonstrated unequivocal evidence of changes in the brain following chemotherapy. “When we looked at the results, we were surprised at how obvious the changes were,” said Dr. Rachel A. Lagos, who participated in the study. “Chemo brain phenomenon is more than a feeling. It is not depression. It is a change in brain function observable on PET/CT brain imaging.”
Equally disconcerting, it is not unusual for women undergoing treatment for breast cancer to experience early onset of menopause. And as with chemo brain, this potentially debilitating side effect is often not disclosed. In an exchange which embodies the pervasive lack of disclosure in oncology, user “dmorgan41,” who is in remission and has already been through numerous cycles of chemotherapy, asks on a forum on breastcancer.org, “Can anyone tell me if chemotherapy starts early menopause?”
Honesty is one of the sacred pillars of medicine. For without honesty trust, confidentiality and mutual respect cannot survive. Indeed, the doctor-patient relationship cannot survive and will vanish and disintegrate into our despairing and starless ill-fated night.
David Penner is a writer.
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