Learning firsthand the value of compassionate medicine

TWO HOURS BEFORE my dad’s funeral in November, I fell down my garage stairs. I was carrying trays of sandwiches that would nourish my extended family after the burial.  Words uttered to me moments before my fall continued to echo in my head.

“Doug, please let us do that, you should be focusing on grieving.”

I remember saying: “You’re so kind. But it’s no bother. It will only take me a moment”.

That moment will reverberate for six months.

I could not stand up for 30 minutes. But time was not on my side. I had my father’s eulogy to give and nothing was going to stop me from that honor. So I borrowed some crutches from a neighbor and placed a bag of frozen broccoli on my knee (we were out of peas) and somehow delivered the most important eulogy of my life.

Three days later, I learned that I had a “intermediate to high-grade tear of the distal quadricep tendon.” As a result, for the first time in my 18-year tenure at UMass Memorial Health, I transitioned from senior leader to surgical patient.  And the experience might help me transition back as a better leader.

In 2010, after the landmark passage of federal health reform, I wrote a provocative article for the Boston Sunday Globe Magazine entitled: “What really ails American health care.” Its subtitle was not subtle. “Hubris, at all levels, drags the system down. And no law can fix it.”

I observed a form of exceptionalism that had developed in American medicine, where we had come to think too deeply in our own greatness. And that attitude was causing a complacency that held us back from the hard work necessary to achieve transformational improvement.

Some of my colleagues were not happy with me.  As one privately told me, “You’re biting the hand that feeds you.” I didn’t see it that way. I felt that if we are to aspire to greatness, we must allow for candid and open conversation of our warts.

A child psychiatrist told me the real evil in medicine came from the insurance companies, not the providers, and that is where I should be targeting my criticism.

And yet, the responses I received from patients were completely opposite. While some of my colleagues wanted me tarred and feathered, the patients wanted to plan my coronation. They loved the piece and shared many stories of how much it resonated with them and their experiences in the health care system.

Whether my observations were right or wrong, fair or unfair, what seemed inescapable to me was how wide a chasm there was between how providers think of the health care system and how patients experience it. And I came to believe that our jobs as health care leaders must be to do everything in our power to close that gap. I now have a great chance to do so.

My decision for surgery was not easy. My leg would have to be immobilized for weeks and full recovery would take at least six months. My life would be completely disrupted. And it may not even work. Sometimes these things best heal on their own.

Here was my deciding question: what would offer me the best hope of continuing to hike the mountains of Acadia National Park when I am 75?  The answer, according to the experts, was surgery. Short-term pain for long-term gain.

I did not know my surgeon beforehand. I let the system do its job. But I did check up on him. I learned he is an outstanding surgeon with exceptional technical skills. Other surgeons choose him when they need surgery. What I didn’t hear was anything about his bedside manner. But I didn’t care. Bedside manner will not get me up Cadillac Mountain. Or will it?

The night before surgery, I was anxious.  It was my first surgery and I kept thinking about the complications that could occur; never mind that the risk of such things is extremely low. Then I got a text message from Andy Karson, our academic medical center’s chief medical officer.  Andy’s professional credentials are impeccable, but what stands out most about him is his bedside manner.  I have never met a professional colleague who treats people with more dignity and respect — in every interaction.

Andy manages our system’s COVID response. That particular day was about as bad as it gets.  We had dozens of patients boarding in our emergency department because our inpatient beds were all full.  Needless to say, Andy’s hair was on fire. And yet, despite what must have been one of the most difficult days of his career, he remembered my surgery and took the time to reach out:

“Dear Doug, you won’t need ‘good luck’ for tomorrow, because things will go great! But I wanted to wish you the best going into tomorrow, and please let me know if there’s anything I can do to help at any point. All the best, Andy.”

Many of my other colleagues reached out as well to help and show their concern.  And there was nothing profound in Andy’s text. But that’s the point. Very small acts of kindness can pay huge dividends. Something about it touched me. The kindness. The timing. The thought behind it.  It was the perfect medicine for me at that moment to ease my anxiety. And he somehow knew it.

It didn’t stop there. The next day, as I was home and groggy after surgery, my cell phone rang once. It was Andy. How are you doing? Are you in any pain? Is there anything I can do to help? Hang in there.

So what is it about this soft stuff?  Have we been thinking about medicine all wrong?  Could small acts of compassion be just as important to our healing as highly advanced technical skills?

Two innovative physicians at Cooper University Health Care sought to answer that question. Cooper is a large academic health system and research center in southern New Jersey. Dr. Anthony Mazzarelli was its chief medical officer and was charged with improving patient experience and physician engagement.  He was deeply troubled by what he saw amid an epidemic of burnout among health care providers.  He knew that when providers are burned out, they suffer from compassion fatigue, which brings with it an inability to personally connect with their patients.  And when that happens, patient experience suffers mightily.

Mazzarelli knew in his heart that showing compassion was the decent thing to do.  But could it actually produce better health outcomes?  If he could prove this, it would be a game changer in terms of getting his physicians on board. So he tapped a colleague named Stephen Trzeciak, the top physician scientist in his system to try to find out.

Trzeciak was perhaps the last person one would call on to research soft stuff.  His academic life was filled with hard stuff, as evidenced by the rigor of his scientific research.  But he agreed to do something that no one had done before.  He would conduct a systematic review of all the scientific literature to see if treating patients with more compassion really mattered and, if it did, whether it was measurable.

What he found was astounding. In 2019, Mazzarelli and Trzecia published their findings in a very readable book called Compassionomics. They document scientific study after study that directly links compassion to better health outcomes for patients. They find again and again that human connection matters deeply in healing and health, both psychologically and physiologically.

Compassion calms psychological responses, and a personal connection with an anesthesiologist before surgery actually lessens the need for sedation.  Compassion lowers blood pressure, reduces perceptions of pain, improves self-care, and promotes the quality of care.  It results in fewer medical errors.  They even found that it reduces the cost of care.  And they discovered that it is the perfect antidote to provider burnout, because compassion creates meaning and belonging among colleagues.

Thirty-six hours after my surgery, as my nerve block wore off, I started to feel pain for the first time.  Within hours, I was experiencing the worst pain of my life. The Oxycodone was not helping.  My discharge instructions said to call my doctor if I have a temperature of 101 or higher. Mine was higher, but only slightly. What should I do? It was late on a Friday night and I didn’t want to bother anyone. My wife took matters into her own hands and called the doctor’s office. She got a return call from the covering on-call resident within minutes.

I noticed that she was interrupted repeatedly before getting out the most basic elements of my situation. He said to her: “I don’t know why they put that on the instructions; a fever happens all the time after this kind of surgery. It is not an issue.”

She then asked about the pain and whether she could increase the Oxycodone beyond the five milligram dose prescribed.  The rushed response: “Of course, people take 10 or even 15 milligrams all the time. It’s no problem.”  No explanation of how best to do so.  We were left confused and frustrated. We did not feel heard. The advice he gave seemed inconsistent with the written instructions.  We had to call on a family member, who was a pediatrician, to help us. We muddled through, carefully upped the pain meds, and by the next morning I was doing better.

On the following Monday, I called a nurse practitioner named Mary Kay Seguin in my surgeon’s office. I had visited with her once before, pre-surgery, and she was delightful.  She gave me her cell phone number and encouraged me to call if I had any questions.  I gave her the full update.  And she listened.

“I’m a little concerned about that temperature. I’d like to see you today. Can you come in at 2?”

Of course, I could. I later texted her to ask if my wife could accompany me to the examination room to help me digest and interpret the information.

“She is welcome to come! Just call me if you have trouble downstairs. The valet can get you a wheel chair. I’d suggest that as it’s only been four days.”

At our visit, she examined my surgical site, assessed my risk for blood clots and pneumonia, gave me new bandages and a sleeve for my leg, and answered every one of our questions.  We left feeling so much more comfortable.  Mary Kay not only listened; she showed us she cared.

When I return to work, I will not try to find out who that resident was on Friday night.  I am sure he is a fabulous young doctor and I have no idea what other, sicker patients he may have had on his mind.  Residents are asked to do so much and that is especially true these days with COVID raging.  Compassion fatigue is not a personal problem, it is a systemic one. And as a leader of our system, ensuring the right culture is more my responsibility than his.

But if I ever do meet him, and he is open to feedback, here is what I might say.

I understand you don’t have even five minutes to listen to my wife tell my story.  But how about 30 seconds?  If you could just give her that, you might find out some valuable information and you will honor and comfort us in the process.

And maybe you shouldn’t discredit the discharge instructions. That helps no one. Perhaps you could say that fevers can be a sign of infection, but a mild temperature after this type of surgery is not uncommon. Tell my wife not to worry and to call back if it does not resolve in a few hours.

And on the pain, how about explaining that our instructions are strict because OxyCodone can have addictive tendencies when used for chronic pain.  But when used appropriately for acute pain, it is perfectly safe.  And no one should have to experience the kind of pain your husband is in.  So please give him one extra dose, if necessary, until the pain subsides.  And call me back if that does not work.  We’ll make sure he gets more comfortable.

Following this feedback would not add time or burden to his life.  But it would do wonders for ours.

When I am hiking Cadillac Mountain at age 75, I will be deeply grateful for my surgeon. He is a master and will deserve enormous credit for getting me to the top. But equal credit will go to Mary Kay and Andy. They will be embedded in my memory because they touched me emotionally. They understood my pain ad my anxiety.  And they were willing to inconvenience themselves to help me get through it.

We should never lower our expectations for outstanding technical skills. But maybe it is time we acknowledge that those skills, while necessary, are no longer sufficient.  Compassion must be an equal and essential part of every caregiver’s tool kit.  No excuses. No exceptions.  And when I return to full strength, I will redouble my own efforts to help create a system of care where every one of our caregivers has an opportunity to get and to give compassion.  Everyday. They deserve it. Our patients deserve it.  And, as I now can attest, it matters greatly in our healing.

Douglas S. Brown is a health care executive at UMass Memorial Health in Worcester.