Mom and Medicine: What Worries this MD.

Everyone’s life is a unique, evolving story. This is mine.

On April 15, 2016, my mother had a sudden rupture of a brain aneurysm. Prior to this she had never had any warning symptoms and had never been hospitalized. In about one hour she went from a master cook, gardener, and active caretaker of three young grandsons to being unresponsive.

There are many doctors in our family: I’ve been a gastroenterologist in solo private practice for over 10 years now. My father and brother are both cardiologists, my sister is a pediatric dermatologist, my sister-in-law is a pediatrician, my father-in-law is a rehabilitation physician, and my wife is a podiatrist.

In spite of our “insider” positions in the world of American medicine, we were overwhelmed. There is nothing that throws you headfirst into the whirlpool of the healthcare system like being the loved ones and medical decision makers of a critically ill patient. And if it was difficult for us as physicians to navigate around our healthcare system, I can only imagine how much more difficult it is for our patients and their loved ones.

You know the phrase, “the fog of war”? I’ve called this “the fog of healthcare.” What we’ve experienced in this trial is the best of what American healthcare has to offer — and its systemic flaws. Flaws that I think will only worsen with what our government currently has up for proposal.

The proposal stems from a law passed last year by Congress called the Medicare Access and CHIP Reauthorization Act (MACRA). In short, the policy rule aims to change fundamentally how Medicare pays for medical care. And generally, whatever Medicare decides, the private payers eventually follow. So this rule will influence the entire financing of healthcare in America.

The premise is that we should be paying for healthcare quality over quantity, through evidence-based metrics that standardize high-quality healthcare. And that we should use integrated electronic health record systems that help track those metrics.

Sounds good, right?

But the fundamental flaw of the proposed rule is how it chooses to measure quality in healthcare.

Now please don’t mischaracterize me. I consider myself an evidence-informed physician. And I’ve had an electronic medical record (EMR) system since Day One of starting my practice. I’m not some wistful advocate for going back to the medicine of yesteryear.

I also recognize that the desire to measure and standardize the practice of medicine is actually part of a larger trend that champions the promise of “Big Data” analytics to revolutionize many industries. It’s happening in sports, education, finance, and start-ups. Medicine is just a latecomer to this party.

But I have three main concerns.

  1. Can we coercively apply population-based conclusions (which are themselves flawed, as researchers like John Ioannidis have shown) to the care of a unique patient, in a unique environment, with a unique context?
  2. Are the things we’re going to measure, and hold physicians accountable to, accurate external indicators of a patient’s health?
  3. Most importantly, are we actually measuring the totality of the patient’s health? Where are your metrics for the interiors of illness? Have we thought at all about how we can measure that? (And no, Press Ganey patient satisfaction scores don’t cut it).

 

Thrust over to the other side of the patient-doctor relationship with Mom’s brain hemorrhage, we as doctors got a deeper perspective on what is good — and not-so-good — in our healthcare system.

The not-so-good: The move to codify medicine is turning practicing physicians and trainees more into robots than critically thinking caregivers. Evidence is being indiscriminately applied with less regard for individual context and the humanity inherent in the practice of medicine. The EMR reigns supreme, where imprecise information once keyed in gets propagated downstream and distorts the actual happenings of the patient. And we’re being pushed into acting more and more as case managers than as physicians. I didn’t want a case management disposition on Mom. I wanted a doctor.

The good: Among many, two experiences come to mind.

One is the attending physician of the neurocritical ICU. Here was someone who was exceptionally well-trained, aware of all the neurocritical literature, and clearly the alpha dog of his team. I am sure he would be stamped “high-quality” by some proposed MACRA rule. But what impacted me about him was that he was evidence-informed — not evidence-enslaved. He treated Mom as an ultimately unmeasurable human being, not a data point. And when she was gurgling during rounds and needed suctioning, he stopped rounds and suctioned her himself. He could have called the respiratory therapist to do it, but he chose to get down and dirty himself. He touched Mom in the intimate way only a healer can do. And in doing so, he touched me.

The other is what happened on perhaps the worst night of our lives. My brother and I were given a very poor prognosis for Mom from a well-meaning physician, based on an imaging study we had asked him to interpret. We were told that she would be essentially in a “locked-in” state, like a Sleeping Beauty with the added curse of not being able to move anything at all in the brief periods she might be awake.

We were considering for Mom a procedure the next day to relieve her of possible cerebral vasospasm. As my brother and I contemplated whether to follow through with this procedure or start considering comfort care, I called the radiologist who would be doing the procedure at our hospital. He knew me and my father well, who had been practicing at our hospital for about as long as he had. I knew this procedure wasn’t the norm for the radiologist, though he was comfortable doing it. I also knew he had already spoken to the physician who had given us his bad news.

In tears, I asked our radiologist the question that gets asked of us all as physicians. If this were your Mom, what would you do? He paused for a moment and said with his heart, “I would do it. I’d feel I did everything I could do for Mom. You’re a good kid. And your Mom is as beautiful as an angel. I’ll do the procedure. I want to honor you, and your Dad.”

I will forever hold that conversation in my heart. But there’s no current metric I’m aware of that captures that conversation. That precious physician will be “measured” in my heart, and in the hearts of the thousands of other patients whose lives he’s touched.

To be clear: I am not against metrics in medicine. But we need to consider much more deeply how we as a profession and a society want to define those metrics. Quality must be measured not only in what is true, but what is good, and what is beautiful. The proposed MACRA rule is woefully inadequate in measuring such quality. And I fear it will further destroy what is true, good, and beautiful about the practice of medicine.

 

 

The foundation of medicine is the patient-doctor relationship. That relationship is sacred and should be inviolate. On the inside of the patient-doctor relationship is trust. And on the inside of trust is love. Find a way to measure love in medicine, and I’m all in. It shouldn’t take 962 pages of regulations to do it.

In the meantime, anything that honors the unique expression of love and healing that is the patient-doctor relationship, I am choosing to promote and preserve. Anything that doesn’t, I am choosing to disturb and discard. Because without the sacred patient-doctor relationship, medicine is lost. And I feel the pending reforms could undermine the patient-doctor relationship.

It turned out that the prognosis we were given on Mom wasn’t accurate. She’s on the slow road to recovery. And her care in so many ways has been amazing. What’s helped her are healthcare professionals, grounded in evidence without being constricted by it, practicing the art and science of medicine with an open mind and an open heart.

And most fundamentally, with love.