Lauren B. Smith, MD
University of Michigan, Ann Arbor, United States
Photography by Elena Levitskaya, RN
Nana, my grandmother, sat expectantly at the edge of the examining table. Our family huddled near her in the forced intimacy of the clinic room, and I was warm in my white coat. As a pathologist, I rarely wore it since I do not see patients, but I had grabbed it for the appointment because my grandmother lit up every time she saw me in it. I am the only doctor in my family, so the coat is a novelty. In this setting it felt fraudulent—as the roles were reversed and the surgeon held my rapt attention. If the white coat had true meaning, shouldn’t I have been able to avoid this situation altogether by diagnosing my grandmother’s cancer months before?
Our eyes all widened as her surgeon listed the possible complications of removing her recently diagnosed thyroid tumor. The list included: “inability to speak, inability to eat, difficulty breathing, tracheostomy tube, feeding tube ...” I looked at my grandmother who was 90 (and looked 70). She had just moved into a retirement home, and it was like watching a college freshman in autumn. A loner for much of her life, she had new friends and seemed happier than ever. She walked two miles a day and was a champion in her Wii bowling league. I could not imagine her in any of these unspeakable conditions.
Then it dawned on me: I am a physician. I know the drill. Nowadays, there is no room for paternalism in medicine. Full disclosure is the rule. If there is even an infinitesimal risk of an undue outcome, this must be disclosed. As a recent medical school graduate and ethics committee member, I was a champion of informed consent. But I’ll admit it—I suddenly longed for paternalism. The fear in her eyes was a high price to pay for all of this information, and I pined for the days when physicians, not required to give you all these uncomfortable details, just told you how expertly they would cure what ails you.
Her first question was what would happen if she did nothing. The surgeon explained that while that was always an option, she did not recommend it. The neglected tumor had already behaved badly, moving into her lymph nodes. One lymph node had grown quickly, and Nana had noticed it one day while applying her makeup. The surgeon thought that the cancer had the potential to suffocate her.
I felt a bit panicked by the gravity of it all. The physician in me knew that most of these surgical complications were highly unlikely. In spite of this, I pulled a former surgeon colleague aside and asked him how often these complications really happen. I was relieved when he said, “Oh, she’ll be fine.” And he was right, for a while.
She made it through the surgery like a trooper. She was back to eating a full plate of food within 24 hours. Up and around almost immediately, she was walking the halls with drains pinned to her gown. Incredibly relieved, I started to relax.
Over the course of the next month, we had several visits with the nuclear medicine doctor. She explained the procedure that would use radioactive iodine to conquer the remaining thyroid tumor cells. My family spent time thinking about where she would recover and who should drive her home from the procedures —as radiation exposure could cross over from the passenger seat and invisibly affect the other riders.
The next hurdle was radiation therapy. Her tumor looked more aggressive under the microscope than initially anticipated. Though few research studies were available, we were told that radiation might help prevent recurrence, and her doctor seemed very intent on the therapy. Nana didn’t want to do it. We told her it was her decision, but all of us wanted her to have it. Again, a cadre of possible side effects was mentioned, including difficulty swallowing and a painful sore throat as the treatments progressed. I should have known better when the physician said that treating anaplastic thyroid carcinoma in this manner had not been adequately studied. I am pro evidence-based medicine, but this was outside my area of expertise.
My parents committed to driving her back and forth to these appointments five days a week for six weeks, no small commitment as Nana lived 30 minutes from our town. It took a toll on my parents, but they rallied to get her there every day. My grandmother began her steady decline with the radiation treatments. She had difficulty swallowing and even choked on water. She began to look frail and lose weight. She no longer wanted to go to dinner with her best friend at the retirement home, since she could only eat soft food. She stopped taking walks in the beautiful, wooded garden.
We got the news that the tumors were in her lungs only a week after the marathon of radiation therapy ended. The timing was heartbreaking. How had everything gone so wrong?
My grandmother, to her credit, refused any additional therapy. She was so strong and independent that she had refused to tell her longtime companion about the seriousness of her cancer and its recurrence. As he was in his nineties and in poor health, she had managed to hide the gravity of her disease from him.
I was certain he needed to know she was dying. Nana could barely speak now and did not know if he would hear her even if she tried to tell him herself. I finally convinced her to let me tell him one afternoon as we sat in her living room. I broke the bad news, something I had not done since medical school, unfortunately, over the phone. He was heartbroken but strong and spent the next several days visiting her, with the help of his daughters, until she died one week later surrounded by her family.
My grandmother lived a long, healthy life, a fact that is hard to deny when someone is fortunate enough to reach 91 years of age. It was a remarkable achievement. I recognize that it is not productive to look back and have regrets. But sometimes I can’t help it. Should I have found her a different primary care doctor? Should we have diagnosed the cancer earlier? Should she have skipped the radiation therapy? Yes, probably. But I am thankful that she did not suffer very long. In the end, I may not have been able to recommend specific therapies, do a neck exam and make the diagnosis, or relieve the horrid side effects, but I was able to use my medical training in one important way—to let her dear friend know the truth. And when I did, I wasn’t wearing my white coat.
LAUREN B. SMITH, MD received her medical degree, pathology residency training, and hematopathology fellowship training at the University of Michigan. She is an Assistant Professor at the University of Michigan and has been a member of the adult ethics committee since 2005. Her research interests include hematopoietic neoplasms (Hodgkin and non-Hodgkin lymphoma and leukemia), flow cytometry, clinical ethics, and ethical issues in pathology.
About the photographer
Elena Levitskaya, RN has been a Critical Care/PACU RN for the last 15 years. Photography has been one of her creative outlet for over 10 years. She mainly explores nature as an ever-present and alive subject in connection with human perception and emotional responses to natural balance and harmony.