When the patient teaches his doctor life lessons

It was 2015 and I was just getting started with my new practice. A breath of fresh air. After years of working inside the health system, I realized the focus is managing illness, not wellness. The focus was not on building relationships with your patients, getting to know them beyond the small talk, learning their story, meeting those who care for them, and definitely not on making health care delivery simple and efficient. I had no idea where this career move would go. I was nervous and scared of course, but happy.  
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I was rounding at the hospital as a hospitalist as I was still building my new practice when I met a wonderful young man. On my patient list it had said pneumonia as the reason for his hospital stay. I entered the room in my usual way, a knock, a wave, as I walked in with a big smile.  
 
“Hi there! I’m Dr Ahmed, just one of the hospital medicine doctors. How are you?” I said, not realizing my world was about to change.  
 
He managed to smile despite how ill he was from this long hospitalization. His family was at the bedside and greeted me upon entry. As this was my first time meeting him, I summarized his care so far to demonstrate to the family and him that I reviewed his chart in detail before coming so they can rest assured I will smoothly take over his care from my partner.  
 
He had an immune disease that made him susceptible to recurrent pneumonia. Each time he had pneumonia, the bacteria became more resistant to the antibiotics used to treat him that we literally came down to 1 antibiotic that would kill this bug. In addition, his lungs were getting scarred with each illness, leaving less viable lung tissue that could provide him oxygen.  
 
His family started to share his story. They shared with me how he has been battling not only his multiple pneumonias, but also his insurance company. They were taking him to multiple appointments between pulmonologists, infectious disease, immunologists, and multiple tests. The patient and his family could tell when a pneumonia was developing but by the time they would get a hold of the right doctor, he was already in trouble. He would be rushed to the ER. This routine was not only exhausting but kept putting him in the hospital.  
 
I listened to them carefully. By this time I had found a comfortable spot on the windowsill to sit. My brain was flooding with emotions. I was frustrated by the thought of this young man getting hospitalized multiple times and being away from family and friends. I was upset with the system that was not communicating properly and how difficult it was to get a hold of someone to get him the care he needed. If the family can tell when a pneumonia was starting, why was it so hard for them to get the treatment they needed to prevent a hospitalization? Then I was amazed. This young man still smiles and says “thank you” and “please” and “sorry to be a pest, but…” If I was in his shoes I probably would be upset and angry all the time! Not him. That was not in his DNA. He was different. He was unique. He was kind at heart.  
 
I slid off the windowsill as my mental clock screamed “Time is up! You need to see the rest of your patients! Hustle!” I fought this thought away and re-focused. You see, when you work in the system, we all have a mental clock that keeps us moving. Ten minutes here, five minutes there, this is how we get through rounds at a reasonable time with an average patient list of 15-18 patients all with multiple health issues happening at the same time. But, this time, I was different. I was not working for the system anymore so I was in charge of my time, not the system.  
 
I shared my practice with them and my frustration with the system. I told his family they are our teammates in caring for him. Therefore, all necessary resources must be readily available to them when they identify a health crisis is at hand. There should be no phone trees, voicemails, instead a human being there to help. That was my vision for health care. So I took him on as a patient in my private practice. I left the room with hope and determination to change the patient experience.  
 
In the following months and years, we battled his health insurance to cover an antibiotic that was the only one that would kill the bug causing his pneumonia. Several appeal letters were sent and we received denial after denial. His family, by the Grace of God, had a resource in the family who was able to get samples of this antibiotic. So, we hoarded this medication to treat him. It is absolutely amazing how the most powerful nation in the world allows its citizens to have to experience this much difficulty in seeking medical treatment.  
 
He went to Mayo in Minnesota and my team and I directly discussed his case with the team there. The Mayo team appreciated the communication and were able to treat him. He also was evaluated for a lung transplant. Initially he was denied and was high risk. We went to Texas for another opinion and they agreed to give him a chance with a lung transplant!  
 
I have to pause and share with readers how significant this is. I did a video call and he was in his apartment prior to transplant. He took multiple medications and nebulizer treatments just to keep breathing. His entire day was involved in helping his lungs oxygenate. Despite all of these challenges, he kept working at his job. He was determined not to miss work. Even when he was at the hospital, he would try to get work done. How incredible is that?? You have to understand, work gave him a purpose to fight and he deeply cared for his customers. He cared about his employer and his team. He embraced his responsibility. Throughout his illness, I was so amazed at how flexible his employer was with him. It seemed like the entire company were his cheerleaders and they were ready to help him along the way. It is a tremendous lesson for all employers.  While I took care of his health issues, he was teaching me about resilience, kindness, the importance of having a positive mindset; and showing me how to treat my future employees and how important an organizational culture of compassion would be for my future team. It truly was a privilege and a blessing to have this incredible experience. 
 
After his lung transplant, he had about 2 years of incredible health. He was breathing better, having full conversations without coughing, walking without oxygen, and just doing great. My subsequent visit with him was incredible. Here is someone who would be constantly coughing throughout the conversation and now his voice was strong.  
 
Over the next few months, we started to develop a pneumonia here, a cough there, and he was treated accordingly. But, soon, on CT imaging, we started to see what we all feared. The scarring of his lungs started. It truly was a “oh shit” moment as I reviewed his images one day. Despite this, he battled with a smile and kindness.  
 
As a physician, there are times when you look at a radiographic image or set of lab results where you have a gut wrenching thought. While you wrestle this horrible thought, you become mindful of the surrounding glare from the patient and their family members. You have to quickly be mindful that although you have a bad feeling about something, you must reserve that thought until you complete the work up. Every physician has that feeling, that concern or belief, when they first see chaos on paper or radiographic image. At the same time, you must keep your composure and prepare the patient and their family members for what may lay ahead.  
 
After several more months, while I was rounding at the hospital, I received the dreaded phone call. As I was whooshing room to room like a downhill skier maneuvering the halls and going room to room, I stopped and stared at my phone. “LiveActive Member” it read. Before I answered the phone, I had a terrible feeling it was him. It was.  
 
He had called because he was having excruciating pleuritic chest pain. This was pain each time he took a breath. As his lungs expanded, the nerve fibers burned with pain signals bursting at the seams. He had this before and we were able to calm it down with medications, but this was different. He was screaming in pain and could not even complete his sentences. I calmed him down and knew this was a losing battle.  We ultimately had to send him to the hospital. 

His oxygen needs increased while the team worked on his pain. He started to require very high concentration of oxygen. Even then, he was insistent on getting home so he can return to work. But his body would not comply. His lungs continued to fail and he agreed to hospice care while in the ICU. 

I finished up my last patient at the office and made the final click of my mouse to close all the windows on both computer monitors. I closed my eyes. It was an exhausting day. My wife, our Chief Operating Officer, came to my office. The two of us are the last to leave the office for many years. We both enjoy the quiet after hours that fill our office after our entire team heads home after a hard days work. 

"You should go visit him tonight," she said with a soft voice after she had settled quietly into one of the chairs across my desk. 

I was still staring at my black monitor screens, just exhausted from the day. My feet felt heavy. 

"I can drive and you just sit and relax. Or I can just go with you to keep you company!" She said in her usual upbeat excited voice. 

The two of us headed out, left her car in the parking lot, and got in my car to head to the hospital. Once we arrived to the ICU, I met his family and shared my condolences. I then walked over and held his hand. 

I was relieved. He was finally comfortable. He wasn't struggling to breath, he wasn't in pain. He was truly resting. He was on some sedative medications and on high flow oxygen. His family shared with me that they were trying to get him on lower oxygen to move him to the hospice floor and he was now full comfort care. While we visited, we shared stories, had some laughs as we reflected on some stories, and reflected on all the challenges we all went through while taking care of him. 

I turned towards him as I was saying goodbye to the family and noticed his chest rise was getting more spaced out. Something in my gut was telling me his time is very near. It was as if he was listening to our stories, our laughs, and when I stood up to leave, his soul was content and ready to move on. It was an incredible experience for me. As I said a final prayer for him, I left the room. 
 
My phone buzzed at 2 am. "LiveActive Member". It was his mother texting me that he had passed. 

You would think that I would burn out by allowing myself to be so close to my patients? It is actually the opposite. Prior to starting my private practice where I create real relationships with my patients, I was just working shifts. Getting through the day. When I did experience a patient death, it was usually anger. Why did the system not allow them to get their meds that may have caused this stroke or heart attack or preventing appropriate follow up, etc? 

Now, I have the privilege to battle with my patients. Fight for them, think with them, guide them as they navigate our health care maze. You feel you gave it your all and patients and their families take notice. You do it together. You battle together. What an honor and privilege to be part of such a significant aspect of human life. Why do physicians give up this incredible opportunity? How have we allowed the business of health care to become more like the manufacturing industry - volume over quality. And if quality is being incentivized, it is surrounded by heavy regulations where the cost of achieving quality service is greater than the reimbursement. So why do it? 

Our health care system is on the verge of massive change. Many physicians have already taken back control of their profession and career by going back to private practice. Ultimately, the support of our patients is what helps us achieve this goal. Your support, allows us physicians to think more clearly, give our patients a little more, strengthen our family bonds who support us and help us be most effective on a daily basis. As many thank you's I get from my patients family members, I tell them "No, thank you for supporting me to do this." 
 
​- Dr Ahmed