I was an intern who had recently graduated from medical school with little hands-on experience when the patient signaled me to his bedside. Initially, I did a double-take, wondering if the man would be asking for me. I glanced anxiously at the morning rounds as they hurried to the next patient. I’d just watched my attending physician present this patient’s case, speaking about him as though he weren’t there. The attending didn’t even look at the patient as he explained the severity of the patient’s cancer, which I even realized was likely to be terminal. This was typical of our morning rounds: little to no communication with the patients displayed almost like museum exhibits.
Maybe the man recognized my look of concern and empathy for his condition in a sea of indifference. He could tell that I was uncomfortable with this presentation style. Perhaps he had somehow mistaken me for a more senior and experienced doctor. The patient insisted on seeing me for whatever reason, and I finally obliged.
“Give it to me straight,” the man stated gravelly. “I somehow trust you. Tell me my prognosis.”
I immediately went pale and broke out in a sweat. I nervously looked around. I was supposed to interact with patients a different way, according to the assignment rosters. Anything I said could interfere with his care team’s plan.
“I-I am sorry,” I stuttered. “You need to talk to the attending physician. I don’t know the details.”
However, looking at him, I paused. This man was not merely a demand to be fulfilled. He was a human being. Seeing the intensity and desperation of his eyes on me, I realized he did not just want information. He needed human connection.
I stayed with him for a few minutes, fussing around his bed and ensuring he was comfortable. It was all I could do. I didn’t say much. Still, he felt better when I left. He looked more at peace.
A year later, while in my second year of residency, we received a fifty-year-old veteran experiencing atrophy in one of his hand muscles as the only complaint. At first examination, the nerve conduction appeared normal. However, we found abnormal nerve transmission in his arms and leg muscles during his electromyogram, which is characteristic of motor neuron disease. Our attending told us sadly that he most likely had Amyotrophic Lateral Sclerosis (ALS). If he did, it would eventually kill him. Our attending displayed sadness with us behind closed doors, but her demeanor with the patient was different. Perhaps no one had trained her to handle the complex emotions involved in giving someone a terminal diagnosis. She spoke brusquely, with a flat voice intonation, as she told the man that he probably had ALS and that if so, the prognosis was not good.
I watched the veteran’s face change. For a moment, there was devastation. Then, it was replaced by anger. “You don’t know what you’re talking about!” the man roared, standing up indignantly. “I come in with a hand sprain, and you tell me I’m dying? You’re all incompetent!” he shouted as he stormed out.
I watched the exchange in shock. The patient’s reaction was unexpected, but the attending’s impersonal mask as she spoke to the patient was just as uncomfortable to observe. What was the right way to deliver a grim diagnosis? I mused. Somewhat shocked, I realized I didn’t know myself.
As a resident physician, I had never been given formal education on how to tell a patient they were dying. There were no lectures or classes on bedside manner. I had assumed that compassion and empathy would be, however, now I see that reality is more complicated. The danger is that if the empathy level is high and there is no professional detachment, the interaction could become so overwhelming that doctors do not know how to handle their own feelings. Remaining cold and unfeeling in appearance could be considered a practical coping mechanism.
Patient denial of medical diagnoses is a complex problem for a physician. Anyone who has had a patient refuse to take their medication knows this. With the growing popularity of anti-vaccine movements that teach that sound, strong people don’t get sick, this problem only appears to be getting worse.
A year after that veteran stormed out of our clinic, I saw him again. He was now confined to a wheelchair. He was dependent on an oxygen tank to breathe, and his speech was barely audible. It was a shocking transformation that left me profoundly moved and saddened.
I knew that there are few treatments for ALS, and so his denial probably hadn’t played a role in his rapid decline. However, what if he had a condition that could be treated and had delayed or refused treatment because he didn’t trust the diagnosis or the doctor?
I look back on the day of the veteran’s diagnosis and wish he had received a more compassionate response. Had the attending appeared more concerned for their condition, would he have trusted her as that patient trusted me to tell him the truth all those years ago? As a health care professional, I understand the importance of being upfront with my patients and helping them mentally prepare for a challenging diagnosis. I recognize the importance of guiding them to accept realistic expectations and protecting them from the dangers of having unfounded optimism that may lead them to attempt desperate measures or be preyed upon by unscrupulous people with useless alternative therapies. Wanting to provide hope to suffering people is a natural human tendency. As doctors, however, this need is superseded by the responsibility to provide accurate and realistic information on the diagnosis, the prospects, and the recommended courses of action, so that patients can make informed decisions and come to terms with their challenges. However, these critical directives do not preclude that the information be communicated with tact, compassion, understanding, and, most importantly, dignity.
Francisco M. Torres is an interventional physiatrist specializing in diagnosing and treating patients with spine-related pain syndromes. He is certified by the American Board of Physical Medicine and Rehabilitation and the American Board of Pain Medicine and can be reached at Florida Spine Institute and Wellness.
