Peer-Coaching for Heart Surgery Patients

Filling a Gap in Care

Heart surgery is a life-changing ordeal - for better or worse. A “flip” as Jeffrey Kripal might categorize it. The kind of event that can change one’s view of reality for those who remain open to the experience.

For the last nine months, I’ve been coaching heart surgery patients here in the Seattle area with the intention of providing perspective and tools that may reduce their suffering. I experienced the power of peer support following my journey with heart surgery and recovery and then as President of Mended Hearts of Puget Sound. The idea for peer coaching arose after I joined the Foundation for Healthcare Quality’s Cardiac Care Outcomes Assessment Program (COAP) as the patient representative on the management committee. I proposed the idea of a peer coaching program to work with patients through their surgical ordeals, and we turned it into a program that exceeded my expectations.

In 2022, as I wondered how I could be useful for COAP, the idea of peer coaching occurred to me. Peer, meaning the coach has experience in cardiac surgery, and coaching, meaning the peer uses coaching techniques to facilitate change. What if cardiac surgery patients had access to a peer coach? What impact could such a program make on patient care? Could peer coaching reduce anxiety and depression and increase the rates of cardiac rehab participation?

I worked with over a dozen patients using a methodology that blends developmental and somatic coaching methods with insights from my experience as a heart surgery patient. Now that the program has ended, I continue to coach heart patients as I’ve seen the benefits and know it works. I can’t say no. I wish peer coaching were available when I had my surgery. I wish I could have spoken with someone who had been through it. The more patients I coach, the more I realize how crazy it is that patients typically don’t speak with other patients. It’s a rip in the fabric of healing.

In 2023, we designed the peer coaching program to match the surgery experience, acknowledging that it unfolds over time. Scheduling surgery, preparing, waking up, recovering in the hospital, recovering at home, and integrating physical and emotional healing are distinct experiences. To simplify, I did all the coaching. I took courses to qualify as a HIPAA-compliant patient visitor and two six-month coaching training programs to qualify as a certified developmental coach. I worked with ten patients over the course of seven months, from pre-surgery to rehab, using developmental coaching methods.

I met with each patient four times via Zoom. Twice before surgery and twice after, bridging the time between first learning of the need for surgery and the first appointment at the cardiac rehab clinic. I remember this as a particularly difficult period of time. It had difficulty relating with others. My identity as a healthy man shattered as I planned for an absence from my professional and family responsibilities. I created a will and advance directive. I withdrew emotionally. I tried to soothe my mind with information, but there was nothing in the surgery packet or on the internet that mentioned my feelings. I did what I knew how to do: retreat inside, bury the feelings, and take comfort in the belief that I could endure anything.

When I told my friend and Blokable Board member Mitch Kapor I would be having heart surgery, he asked, “Are you aware of the high prevalence of depression in heart surgery patients?”

I wasn’t.

I knew nothing of depression. Heart surgery was a bump in the road, another challenge to overcome. How could I get depressed? I might suffer brain damage or die, but I didn’t see how I might be depressed. I didn’t acknowledge the anxiety or allow it to touch me. I had a plan to repress my experience.

I often see the glaze of disbelief and denial in the eyes of many of the patients I coach. In our first meeting, they’re often plotting to squash the onslaught of anxiety. It’s all too much. They’re scared and anxious, breaking out their personal arsenal of emotional repression techniques they’ve developed over a lifetime to handle difficult experiences — a blend of silence, tears, and anger followed by resentment, submission, and repression. Patients usually tell me how they’re going to shut down. I remember how it feels to hatch the plan.

Patients would often say, “I’ve been feeling really anxious, but I tell myself there’s no reason. There’s nothing I can do.”

“What’s wrong with feeling anxious?” I ask.

It’s a question that puzzles and uncovers new possibilities. Could it be ok to feel anxious? Most people are trained from a young age to hide their feelings. As children, anger, sadness, and fear are usually not rewarded. Parents instruct children to fix their feelings.

“Get over it! What do you have to be sad about? No whining in this house! Don’t you raise your voice to me!”

Children respond by repressing their emotions to appease their parents - their source of security and belonging. They develop mechanisms to repress their emotions, and over time, the pathways from perception to response are reified in the nervous system. When a feeling arises, shut it down. Fix it. Don’t feel it. There’s no room for feelings.

The broad implications of emotional detachment can be seen all around us in the form of isolation, depression, and loneliness. When we can’t connect with ourselves, we can’t connect with others. When difficulty arises, like heart surgery, reaching for familiar coping mechanisms is a natural response. Patients remember how it feels when others aren’t present or can’t relate, and they retreat inside themselves. They feel alone, like no one can understand.

When the patient realizes they’re shutting down but may have other choices, speaking with a peer can be transformative. The patients I work with know that I can relate to their predicament. Their story is my story. When I had surgery, I shut my feelings down because that’s how I handled difficulty, and it cost me. I designed my emotional detachment to carry me through my surgery and recovery. I planned to endure, perform, and put the whole thing behind me. When that didn’t work out, when I didn’t recover, the darkness came, and I had no choice but to feel it all. A dark night of the soul. That was difficult, but I learned a lot about trauma. Specifically, trauma can be experienced, cleared, and released, freeing the nervous system to rewire. I felt all of this in my body.

In our first meeting, when the patient is often just starting to shut down, there’s an opportunity to change course. To bypass the trauma by experiencing rather than repressing the difficulty.

“Where do you feel the anxiety in your body?” I ask. Most people have never considered how feelings are experienced in the body. The feeling is usually dealt with conceptually before it can become a problem. But the feelings can be felt in the body, and when they’re repressed by the mind, the nervous system doesn’t know what to do with the energy. The body locks the energy of the repressed feelings in place until they can be felt and cleared. Many researchers and authors have documented this phenomenon. Michael A. Singer, Dr. Peter Levine, Dr. Gabor Mate, and Dr. Bessel Van Der Kolk are a few of my favorites, and I read them deeply through my bout of darkness and then clearing. But none of them experienced heart surgery.

“I invite you to take a deep breath into this area. What do you feel.” I ask. It’s an invitation to connect to the actual experience. How does it really feel? Tight, constricted? What does anxiety feel like? Not as a concept but as a feeling in the body. Once the connection is established and ideally accepted exactly as it is without a desire to fix it, it’s possible to hear what the body has to say.

It’s easier for patients to listen when they’re calm. I usually start our meetings with a breathing exercise to help them descend from a state of chronic stress. Within minutes, it’s possible to re-engage the parasympathetic nervous system, which assures the body and mind it’s ok to relax. For many, this can be the first time they’ve felt calm in weeks. It’s a powerful relief.

Having experienced surgery and recovery, I know my body is a miracle. The idea that a surgeon can saw the sternum apart, put the heart and lungs on a machine to keep the patient alive, and reroute major arteries around blockages to reestablish healthy blood flow is incredible. Then, the body can fully recover, to the point where, for many, surgery fades into memory, and full health is restored. This is nothing short of miraculous, and the capacity to survive and heal is within all of us. The mind has no role to play. But when a patient has just learned they’ll need heart surgery to save their life, a lifetime of emotional patterning kicks in. Fear, anxiety, pain, mortality. The fears spin into thoughts and stress.

When I meet with patients, we talk about our stories and how we found our way to surgery. Patients are curious about what to expect. Some have spouses and caregivers, and others don’t. They tell me about assumptions they have regarding recovery and healing—different human responses and experiences. They’re curious to know what I know, having been through it and having reached the other side. They look at me and see it’s possible to recover and be healthy again.

I feel privileged to share this time with patients and to share my experience so it may ease their suffering. And I’ve seen that everything about the quality improvement program we delivered can scale. There are 900,000 heart surgeries every year in the US. There are 30-40 million major surgeries every year in the US, 310 million worldwide. The numbers are going up every year, and the vast majority of these surgeries are scheduled traumas.

Next week, on June 5th, I’ll present the findings of our nine-month quality improvement study on the impact of peer coaching for cardiac surgery patients at the annual meeting of COAP. The room will be filled with cardiac surgeons, cardiologists, nurse practitioners, rehab specialists, and others. I’ll be the only patient.

I’ll talk about how isolated I felt as a patient and how nourishing it was to speak with someone else who’d been through it. I’ll talk about my conversations with patients as they navigated their deepest fears. I’ll share details of the program we created to make a difference for patients. And I’ll share the results, which show the program made an impact, helping patients reduce their anxiety and increasing the likelihood they’ll participate in cardiac rehab.

Somewhere between 40% and 60% of heart surgery patients experience depressive events, and more than 20% suffer major depression. Raising cardiac rehab participation rates from 20% to 70% would save 25,000 lives and 180,000 hospitalizations every year in the US. It feels like we’ve uncovered a path to make an impact on both depression and rehab participation and reduce suffering for a lot of people.

The patients I worked with are real people who live in my heart. All of them said the program helped them manage their anxiety. They all felt peer coaching should be available to all heart surgery patients. They all said peer coaching helped them prepare for and recover from surgery. They all participated in rehab. It made a difference. I’m so grateful that we have identified a way to reduce suffering and help patients, and we have a plan to expand the program’s availability.