When a Patient is Greater than the Sum of His Parts

I’m running out of options, I thought to myself after the nurse, Sarah, paged me. She wanted to let me know that the Trazodone — our fourth pill in a trial of treatments for our patient — also hadn’t helped. I was becoming powerless to Walter’s inability to have a restful night’s sleep.

Our patient was Walter Stephenson*, a 40-year-old African American man, though upon first glance he appeared older. Tall and moderately built, he looked rugged, with high cheekbones and a small gap between his two front teeth. His thick, curly hair was well kept, while his hands and abdomen were scattered with bruises from needle sticks, blown IV sites, and insulin injections.

Our staff knew him to be extremely pleasant, but over the course of his five-week stay, he’d grown agitated, lost weight, and stopped caring about his appearance.

Making my way through the hospital during morning rounds, I walked into his room to the same view I’d seen for the last several days. He was lying in bed with his shirt off, flushed from the concoctions of IV medications he received around the clock. He stared blankly at the TV, giving his eyes a break every so often with an equally vacant gaze out the window.

He no longer made direct eye contact with us — not out of indifference, but out of sheer inability to locate my eyes within the blur of his vision, a consequence of his near-blindness. Two framed pictures featuring his wife and son graced his nightstand. Alongside them were get-well cards and a handwritten note from his teenage son, which read, Love you, Dad. Walter’s earbuds dangled along his neck and plugged into his iPhone, his most constant companion.

A distinct odor instantly repelled all who entered Walter’s room — despite fastidious care, the smell of his rotting feet indicated an active infection. Because the mist burned his eyes and caused him to constantly sneeze, he didn’t like for us to spray air freshener. The stench stuck to my clothes and in my nose for hours after I’d left his room, though it no longer seemed to bother Walter at all.

“Doc, can you please help me get some sleep?” The question was now part of our routine, a plea inching toward desperation as yet another sleepless night passed. The all-night vigils had become a type of confirmation of my patient’s inability to thrive.

Eight years ago, then 32, Walter learned he had diabetes. Because he was adopted, he hadn’t been aware of his potential risk factors. Blood work revealed severe kidney failure — the first of a series of utter disappointments regarding his health.

He was ordered to undergo dialysis three times a week for the rest of his life, which meant he was only able to work part time. Until two years ago, Walter had tried to live a relatively normal life, maintaining a steady job at a factory. As the disease progressed, however, his role was eventually limited to clerical duties for a short time until his near-blindness made it impossible for him to work altogether.

As the high sugar levels in his body damaged his nerves and blood vessels, he started losing vision in both of his eyes, and the sensation in his feet faded to a point where he couldn’t feel the floor beneath him. It became easy to step on sharp objects without even noticing, and as a result, he developed dreaded diabetic foot ulcers, the type of wound that can silently chew up a leg.

The decline of his health had accelerated several weeks prior, after he developed an infection at the site of his dialysis catheter. The infection spread to the rest of his body and seeded his heart valves. Walter was put on IV antibiotics, but by then the other infection from his ulcerated foot had already spread to the bones in his toes. Little by little, surgeons removed parts of his feet to keep the infection from spreading. When he needed to get around the hospital, he utilized a wheelchair, though his activity had decreased drastically and had left him mostly bedridden.

While trying to make peace with the loss of his toes, Walter was hit with yet another setback when his entire foot had to be amputated due to the flesh-eating germs that were making a home in the bones of his legs. Unfortunately, even this couldn’t eradiate the infection. Now, he was preparing for the biggest surgery of his life — a leg amputation below the left knee.

“I think you all feel that I’m supposed to be happy that I’m even alive,” he groaned, helpless, agonizing during one of my visits. “You think that if I have to lose my foot, it’s okay. But it’s not okay, Doc.”

When our conversations reached this point, I always made an effort to appease him the best I could. We’d recap his treatment plan — one he’d heard countless times — but still I offered the steps again each day as a matter of reassurance.

At some point, he’d always interrupt to ask, “Why is this happening to me?”

While Walter’s question was valid, I needed to keep the conversation grounded in medicine. I did my best to direct him back to the treatment plan. “Let’s get through the surgery and get rid of the infection in your foot. Things will get better,” I said, knowing that despite our best efforts, things for Walter were never going to be the same.

As a medical professional, there are so many times when I feel like taking off my doctor’s cap and fulfilling a more comforting role, and this was especially true with Walter. In certain moments, I wanted to sit down and explain that suffering is part of what makes us human, that we don’t always have an answer to why me. My monologues felt unbearable even to me — these weren’t the answers he was looking for, and we both knew that.

Walter was being seen by a team of specialists, one for each affected part of his body: a cardiologist, a nephrologist, a surgeon, and an infection specialist. Individually, we tackled one area at a time, engrossed in his care while developing a treatment plan. Yet this frustrated Walter. “They just see the disease,” he lamented, “not me as a person.”

I realized that the amount of time and effort I spent listening wasn’t really what concerned him. He wasn’t even especially interested in my acknowledgement of his feelings about his condition. His frustration stemmed from only one thing, and that was my refusal to engage with or respond to his existential questions. He wanted me to discuss the meaning of his suffering. But, as a physician, I couldn’t try to answer why he had to suffer in the first place.

Serious illness or loss often motivates us to seek answers to these big-picture struggles. But physicians are not trained, and frankly are not always willing, to devote much time pondering these why me sorts of inquiries with their patients. It isn’t that doctors don’t care enough about their patients to engage in this way, but it’s a nearly universal adherence to the notion that, for a doctor, to heal the body means to accomplish something tangible: to clear out a clogged artery, to remove a tumor, to eradicate an infection, or to help an individual regain mobility. It’s not part of a physician’s routine to heal metaphysical distress by addressing existential questions like Why is this happening to me? Is there a purpose behind this suffering?

As humans, we’re the only species that can contemplate our mortality. This ability is exactly what makes us the dominant species on Earth. What we passionately glorify as human progress is the result of our desperation for self-preservation. This obsession alone has resulted in some of our greatest achievements in medicine and technology. But the ability to reflect upon and be motivated by our mortality comes at a price. When an illness becomes a constant reminder of our death, we perpetually live in the shadow of our own apocalypse. In the case of Walter Stephenson, it was the impending dissolution of his leg. He saw us — his caretakers — as missionaries bent on spreading bad news.

All along, what we were really doing was attempting to fit his symptoms into certain diagnostic pigeonholes. In Walter’s case, based on his symptoms, we fit him effortlessly into the diagnostic criteria of depression based on his lack of interest, hopelessness, and insomnia, for which standardized counselling and medications are customary recommendations.

But Walter kept saying, “Doc, I’m not depressed. I’m looking for answers.” The very act of him asking such perplexing questions compelled us to view him as even more “depressed.” The more he persisted in this state, the stronger his severity of depression was, according to customary diagnostic norms.

When faced with imminent loss, few people can pretend that they’re without fear, but most of us hopelessly yearn for answers to the question of why me? No medication can give the right answer, because this is not a mental illness. This isn’t an ailment to be cured with medications — it is our earnest, helpless plea to understand why we suffer. When Walter was tormented by the thought of what did I do to deserve this?, our medical theories failed him. We referred Water to a psychiatrist, but to no avail; his questions persisted.

There was only one other person we thought might successfully address his questions head on — the hospital chaplain. That’s when Father John Sieler joined our care team.

Our goal as doctors was to make Walter better, both physically and emotionally. If his current state continued, Walter was at risk of withdrawing completely and refusing his treatments, at which point saving his life would become next to impossible. We had high hopes that Father John, as we called him, could engage in Walter’s existential rhetoric, appease his need for sympathetic dialogue, and help him internalize his suffering, thus easing his emotional distress.

A week passed. I started to notice a slight change in Walter’s attitude. For once, he stopped asking me the difficult question of why me? He seemed to be more agreeable to the relatively severe treatment plans we were proposing: the amputation, more antibiotics, and a longer hospital stay. He wasn’t without moments of melancholy and he still struggled with sleep, but there were glimpses of improvement. A great sense of relief washed over me on the morning Walter said, “Doc, I’ll work with you to get me through this.”

He became characteristically more accepting of our recommendations. Our treatment plan didn’t change at all, but his attitude toward it did. With this gradual shift in Walter’s perspective, I sought out Father John to ask what he was doing to help Walter.

The next morning, I arrived at Father John’s office, right next to the small chapel of our hospital. When I entered, I found him sitting in a chair in front of a study table in a rather small room, slightly larger than a cubicle. Father John, in his black clerical attire, had a welcoming way about him, with a pleasant face, thin build, and Zen-like voice. “How can I help you?” he asked, and I could tell that this was exactly how he began every conversation.

After introducing myself one more time, I responded, “We share a patient, Walter.”

“Oh, Walter Stephenson,” Father John’s face fell. He rubbed his cheeks with his palms and shook his head, “Terrible. Too much happening too fast for him. He’s only 40,” he sighed. By the expression on his face, it was as though he’d absorbed some of the man’s own suffering.

“Very sad,” I agreed. Then I cleared my throat and got started by asking what he did on a daily basis with Walter.

“For all patients,” he explained, “I perform what Catholics call the sacrament of anointing of the sick. We pray that that their anxieties are eased, that their sickness be healed, that their fears turn to hope.”

“But what do you actually do to the patient,” I asked like a curious child.

“I place my hands on Walter’s head and anoint his forehead with the oil that’s been blessed during the week. This is part of my daily routine with everyone I see.”

“How did you approach Walter’s questions?” I pressed.

Without wavering, Father John replied, “The Bible teaches us that we all have sinned and fall short of the glory of God. Pain and suffering are not right; they are the tragic consequences of living in a fallen world.” It was clear he’d given this answer to many patients over many years.

This is the expected response, I thought. For those who are believers, it can explain why we suffer, although when severe illness strikes, even the most devout believers struggle to make peace.

“Despite your prayers,” I asked, “what do you tell patients when they don’t get better? What if the infection consumes Walter, and he dies soon?” I didn’t want to come across as abrasive, but I did want to at least attempt to bring us closer to the root of my curiosity. “What do you say to explain how religion can justify suffering? For instance, why do babies get sick?”

He paused for a moment. “We don’t know the answer to everything, but there’s one thing we know for sure.” Then he quoted directly from the Bible: “We are to comfort one another with the knowledge that our destiny is secure in the arms of the Lord, even in the face of suffering and death.’ In other words, suffering is not to be perceived as our apocalypse.”

I kept my posture neutral but continued to press. “But Walter doesn’t deserve this. Is it not unfair?”

In his usual unwavering demeanor, he said something significant, something no doctor I know would ever utter to their patients: “Healing can occur without cure.”

Now it was my turn to pause as I tried to get this right. I felt almost anxious as I spoke. “So, if Walter loses his limbs or, worse, say he even dies, he’s still healed?”

“Correct. Healing could mean cure of illness, yes. But it could also be found in death.” His voice was soft yet affirming. “All of this — both great joy and great suffering — is part of His plan. Through suffering, something profound is revealed to us. It is something magnificent, something unique for each one of us.”

It’s fascinating how charged some words can become, I thought.

“And talking about loss of limbs,” Father John said as he straightened his back, gazing straight into my eyes and exhaling deeply, “look at me.” He directed my attention to his left pant leg as he lifted it to show me a prosthetic metal limb, which replaced his entire appendage from the hip down. He pointed toward his walker, “That’s been my constant companion.” He went on to detail that, following knee-replacement surgery, a stubborn circulation problem had grown progressively worse, subsequently robbing him of his leg. “What can you do?” he shrugged, as if he’d described an every-day misfortune, not the loss of an entire limb. “I still feel blessed to have lived the life I’ve had. I was raised to be a compassionate and caring person, and I’m eternally thankful to God for that,” he said, delicately patting his prosthetic.

I closed my meeting with Father John by asking what he personally thought about Walter’s situation.

“Walter has his good days and bad days, but overall he seems a little better.” He worried that Walter might spiral down and withdraw further if he wasn’t well supported. This was Father John’s daily quest — to offer a sense of comfort and help patients regain their willingness to fight. Then, pointing his palms toward me, he told me that as a doctor, I am also His instrument in healing people.

Father John was trying, and to an extent succeeding, in something we as medical professionals were struggling to do. He was able to regain a better connection with Walter, as well as with his family and friends, as a critical element in the success of his care. Father persuaded Walter’s family to spend more time with him and to reestablish a sense of community he so desperately needed.

I couldn’t tell if Walter, with his flailing health, was ever going to be able to truly come to terms with his situation. What was obvious, though, was the shift in his desire and empowerment to better cooperate with his medical team, giving him a far better chance to recover some of his health.

This essay is a condensed excerpt from Physician: How Science Transformed the Art of Medicine (Greenleaf Books/River Grove, February 2018).