We Are ALL Patients: The Intersection of Science and Art in Nephrology

For decades, I’ve read every book I could find by doctors who describe the process of training or their own health crises. This month, I read one of each, and what I learned was sobering—and applies to how nephrologists and dialysis clinics approach and treat people with kidney failure.

In the national bestseller, The Real Doctor Will See You Shortly: A Physician’s First Year, Matt McCarthy, a Harvard Medical School graduate and now a staff physician at New York Presbyterian Hospital, describes his harrowing and grueling training from starting as a green first year resident just out of internship to a second year resident who had learned to independently handle medical crises and chose Internal Medicine as his specialty.

Harvard Medical School, interestingly, was strong on academics—but did not require practical experience in tasks like putting in airways, IV’s, central lines, drawing blood, reading EKGs or X-rays, etc., and learning these skills along with the ability to assess patients and react appropriately were the main focus of his year. The mechanics of medicine, which are complex and fascinating were clearly more important than the human side.

Spoiler Alert: Dr. McCarthy did learn some empathy along the way—largely by accident—by befriending a man in need of a heart transplant, and by living through a health crisis of his own: an accidental needle stick while drawing blood from an AIDS patient:

“I felt like I was going to pass out or vomit. Time was somehow simultaneously speeding up and slowing down. I was unable to move, trapped in quicksand just a few feet from the needle, from the blood, and from David [the patient]. I wanted to scream but I had nothing to say. I wanted to run but I had nowhere to go.”

This is just the sort of frozen fear that anyone who has any sort of medical crisis experiences. A fight or flight response might have saved us from sabre-toothed tigers (back when there were sabre-toothed tigers), but today, fear is a detriment to learning, just when it is needed most. When we are afraid, we can’t learn. Unfortunately, this is too-often forgotten in health care.

Or, is it? Maybe it’s not forgotten—it’s just never taught in the first place. In the other bestseller I read this month, In Shock, Dr. Rana Awdish—who miraculously survived what should have been a lethal hemorrhage in her 7^th month of pregnancy—was extremely articulate about how doctors are trained, at least at Wayne State Medical School, and what is lacking, observing that:

• “We weren’t trained to listen.”
• “As doctors, we are taught to both conceal our emotions and not to indulge the emotions of others very early in our training.”
• “The mantra was, if you want to treat disease, become a doctor. If you want to treat patients, become a nurse.”
• “Any and all signs of emotions were immediately met with an assessment of ‘perhaps this is too much for you. You may not be cut out for this kind of work.’ We learned that crying happened in closets or on the drive home, but always alone.”
• “I worried that if we couldn’t recognize and respond to our own emotions, what possible hope did we have of helping others to navigate the complex emotional sea of illness and recovery?”

Medicine has always been both a science and an art, but the art seems to have taken a backseat in recent years to “standards of care” and “evidence-based practice” and defensive medicine that does not take into account the needs and values of individuals—even while devoting lip service to “personalized care” and “patient-centered care” and “patient-reported outcomes measures” (PROMs). (Incidentally, I choose Johns Hopkins trained doctors for myself, because they are taught empathy, and they are wonderful!)

Unfortunately, what I have seen too often in U.S. nephrology is a regrettable tendency to view shell shocked, terrified patients as ignorant or stupid or unwilling to make the necessary changes to protect their health and avoid avoidable long-term complications. They’re just “different” from “us,” is the thought. Not as smart. Not as committed. Lazy and unmotivated. Not “capable” of doing, say, home dialysis. None of this is true.

But, we rarely recognize or help patients past their fear. And, we humans are fundamentally emotional creatures. Our emotions, including the fear that provokes a fight-or-flight response, are essential to our very survival. Yet, Dr. Awdish describes medical students being outright criticized for “giving in” to feelings, and encouraged to distance themselves from patients:

“We were implicitly and explicitly instructed on the absolute necessity of partitions, measured distance and aequanimitas. We were taught not only that it would save us, but that if we didn’t somehow find a way to do it, we would kill those we were put there to protect. Our feelings were a direct threat to our patients. It was impossible to evaluate, diagnose, and treat patients if we felt something as they decompensated in front of us, struggled with cancer diagnoses in our office, and lost their dignity to disease.

It was a lie.”

After encountering the healthcare system as a patient in medical crisis whose knowledge of her own body and symptoms was repeatedly dismissed and ignored—almost lethally—and acknowledging that we will all be ill at some point, Dr. Awdish offers a possible solution:

“What if the question I had been posing was entirely wrong? What if it was not How do we get from here to there, but rather, How do we live? How do we live in such a way that honors all aspects of knowledge? Not just medical knowledge, but the body’s knowledge and the truths that can only be delivered through the patient’s perspective, and our communal knowledge of suffering and identity? If each of those bits is a piece of the light, if each one is a spark, we could unite them to become whole.”

Rather than focus exclusively on logic and science in medicine, Dr. Awdish speaks and writes and urges her fellow clinicians to be human. To not separate themselves from their patients, but rather to admit that life and health can be scary sometimes. To monitor their own emotions—not ask patients to comfort them—and watch for and acknowledge patients’ feelings. To be there, without judging.

“With the right question, each patient can be given a recommendation that fits their values,” she notes. At the end of the day, fitting healthcare and, in our case, nephrology care, to the values of our patients needs to be the goal. Not getting people home (as much as we passionately advocate for home), but getting them to the right treatment for them, right now. Which treatment that is will change over time, and that’s okay. We need to ask. And then we need to listen for the answers and to honor them.