I stood by helplessly while a close friend dealt with the devastating emotional fallout from receiving a fresh cancer diagnosis. She was aware of the dangers of melanoma when her husband’s skin biopsy revealed the condition to be malignant. She decided to employ the greatest information and treatment available to enhance his result because she is incredibly clever and conscientious. She found her husband the best doctors without much assistance from me, and in the end he received proper and cutting-edge treatment. His outstanding care was accompanied, however, by significant (and preventable) emotional distress. The science of medicine advanced, and the art was left behind.
Initially, there was the pathology report, which was intricate and subtle, yet difficult for the general public to understand. She obtained a copy of it at her request, but without any attempt at translation by her physician. He felt that she had no business looking at it at all as he had the final say on what to do. She delivered the report to me, enquiring as to whether I could decipher its contents. Despite my lack of training in pathology, I knew enough to be able to put it into everyday language, line by line. She was greatly reassured by this, since it showed the trained eye the uncertainty of the prognosis, rather than the certainty of metastasis and/or fatality, etc.
Next were the node biopsy and genetic testing. She was informed that although it would take six weeks to determine whether he had “the nasty kind of melanoma,” the testing might reveal variations that would indicate worse results. She had to lay out their financial situation in case he needed treatment for a metastatic condition and in case his life was cut short by a certain number of years, which made those six weeks agonizing for her. When the doctor failed to contact them at week six, she called the office to find out how long it would take for the results of the genetic testing to be obtained. The office personnel rejected her and told her to wait as the lab was currently “processing an exceptional volume of samples.”
After suffering for a further week, she made the decision to speak with the lab personally. As it turned out, they were excitedly awaiting the delivery of her husband’s sample, but it had been “lost” in hospital processing somehow. After she called the hospital, someone located the tissue beneath a stack of other samples, properly tagged it, and forwarded it to the genetics lab. She forwarded the email from the hospital apologizing for the delay to her oncologist, who would then address any potential procedural bottlenecks for future patients.
Within a week of the result being submitted to the oncologist, the doctor called (on a Monday morning at 6:30 am) to discuss it with my friend’s husband. He was getting ready for work when he missed the call, and he ended up wasting three more days on the phone with the doctor’s office. My pal had her heart in her mouth the entire time. She kept seeing her life without her spouse. And if the illness took him away from her, how would she survive? How about the kids? Could she maintain her family on her own earnings alone?
“Why was there no indication of the outcome in the phone message from the doctor? He would have made note of it if it had been good news. She assumed. In order to discuss the results, the doctor insisted that his patient come into the office. They then reserved the following available time slot, which was a few more days later. My companion felt that this was not a good omen.
The staff at the oncologist’s office refused to let my acquaintance go to the meeting with her husband as soon as they arrived. They said, “Clinic policy.” Now that my friend’s thoughts was racing, perhaps my husband should see the doctor alone because the news is so terrible that he had to hear it on his own?
She insisted on going with him, though, and the staff felt compelled to check with the oncologist before letting her and her husband into the examination room. They nodded angrily for her to continue after whispering to him in a different room. You could have used a knife to break the tension since she was positive that a death sentence was about to be given.
The oncologist took ten minutes to apologize for the delay in the genetic tissue results after he entered the room. He made the case that the hospital lab was not the cause of the delay and enumerated all the different explanations for why nothing had gone wrong. His attention was so narrowly focused on the email he had received weeks earlier (which basically described the delay, as if it were an attack on his own intelligence) that he nearly left the room before informing them of the results of the biopsy sample and genetic test.
He added, “Oh, and the tests reveal that you have a melanoma that is exceedingly unlikely to metastasis,” as an afterthought at the conclusion of the discussion. The wide excisional biopsy has a good chance of working.
He swept out, his white coat billowing behind him, opening the door and proceeding to the subsequent patient.
The irony is that my friend’s spouse received “excellent” medical attention along with a heaping portion of needless pain. In order to diagnose and treat him, his initial biopsy, extensive excision and skin grafting, lymph node testing, and genetic lab studies were all appropriate and beneficial. But what really made the whole procedure so excruciating was how the information was delivered—or not presented. Regretfully, as doctors, we tend to focus more on the procedural aspects of our work than the psychological effects it has on our patients and their families.
As we proceed to “provide healthcare” to our patients, let us keep in mind not to inflict needless mental suffering on them. The degree of anxiety experienced by patients can be greatly reduced by early and clear communication. Reducing them is a crucial aspect of the art of medicine, which is sadly lacking these days.