You always remember your first. Your first video game console, first car, first boyfriend/girlfriend. I remember my first real patient as a med student, my first patient in my adult medicine clinic in residency.
Today, I remember my first patient in private practice to die on me
He was a skeptic from day one. I had just taken over for Dr. T – a wonderful, caring, good listener who left the practice to go into healthcare administration. “So,” he said in our first visit, “You’ve got some pretty big shoes to fill. And, she wasn’t even able to change me, so don’t go thinking I’m just going to do everything you say because you say so.”
His skin was a sickly yellow hue from years of alcohol abuse. His belly rotund, not from overdoing it on donuts and mashed potatoes, but rather free fluid floating around his belly causing distension and bloating. What fluid didn’t collect there was pulled down by gravity into his legs, turning them into coarse oak trees. He didn’t even bother lacing his shoes – there was no way he could tie them together anyway.
I looked at him and replied, “Well, I appreciate your honesty. I don’t expect you to trust me right off the bat, but I do look forward to earning your trust as we work together. What can I help you with today?” I expected complaints of leg swelling, overwhelming tiredness or even concerns about his yellow, jaundiced skin. What I got was something entirely different.
“My legs are tingling and they hurt. I know it’s from my alcohol, and I’m not willing to budge on that. I’ve been drinking for probably longer than you’ve been alive! What else do you new doctors have for me?”
My training prepared me to give explanations on how alcohol was killing off the nerve cells in his leg and creating nerve pain. During his turn in this conversation, he was supposed to say, “Oh, I never knew that, I’m going to quit this drinking habit TODAY!” I must have been sleeping through the lecture where we learn how to barter with patients. The real world apparently doesn’t follow the script we were taught.
I started, “Well, we can try a medication that helps with nerve pain, but I really think it would be helpful to get all this extra fluid out of your legs -”
“Nah!” he interrupted, “I don’t care about the fluid. I just want the tingling to stop. IF you can do that, maybe I’ll consider whatever else you’re talking about.”
I started him on a nerve pain medication and set up a follow up appointment in a month.
Upon entering the room, he greeted me with, “You didn’t expect to see me again, did you? I didn’t expect to come back. But, here we are. What you gave me started to work, so I guess I want to hear what else you have to say.”
So began our patient-physician relationship
Every encounter for the next 2 and a half years started with a challenge and ended with acceptance. Eventually he even agreed to tell me how much he actually drank – roughly two bottles of wine and maybe a fifth or so of liquor. On a bad or good day, depending on who was looking at it, he’d add in a couple bottles of beer for good measure. He was never willing to quit alcohol altogether, but eventually I was able to get him to agree to cutting back to just 1-2 bottles of wine a day. Since he was so brutally honest with everything else, I was inclined to believe him.
He showed up to every appointment 10 minutes early. Weight started to come down – eventually down by 40 lbs as the extra fluid in his legs started to come off. He was finally able to tie his shoelaces! Smiles were a more common occurrence at his visits, and we even bartered less. We were making progress, slowly but surely.
Last week, his name popped up in my schedule as “POSSIBLE FLU”.
“Dr M,” my medical assistant said, “I think the pulse ox machine is broken – his oxygen level kept beeping at 81 but he had a good pulse on it.”
I rushed in to the room and there he was, hunched over the bed using every muscle in his neck to breathe. Eyes were vacant as all his effort was focused on breathing. His speech was garbled, but I heard him mumble, “Doc, you gotta help me. PLEASE.” Meanwhile, his wife was saying frantically into my other ear, “We think he got the flu from our grandson when we were in California. He’s been breathing like this for 4 days, but he wanted to wait for you. He hasn’t been making any sense when he talks. Please tell him he needs to go to the ER!”
I quickly examined him and heard no breath sounds from the bottom of his lungs up to the mid-lung. He was full of fluid and likely pneumonia, and he was quickly going into respiratory failure in my office.
As I made arrangements for him to go to the Emergency Department, all I could hear him say was, “You just need to fix me, just tell me what to do.
Help. Help. Help.”
After I finished telling the ED to expect him, I finally faced him and gently said the last words I’d ever say to him, “I can’t help you here. I need you to breathe, and I just can’t get you to do that here. You NEED to go to the ER. No more fighting with your wife. You’re going to go now. And then I’ll see you when you’re feeling better.”
I looked into his eyes and they were no longer vacant. There was resignment. There was exhaustion. There was so much fear.
“Ok… you’re the doc.”
I tried to go through the rest of the day and not allow that to impact my remaining patient visits. But, I knew in my heart of hearts this was not going to end well. As the updates rolled in, they became increasingly worse. Within 2 hours of arrival to the Emergency Department, he was intubated and placed on a ventilator/breathing machine for respiratory support. His labs were a hot mess – everything was off. After 3 days his kidneys started to fail, thus he was started on dialysis.
Finally today, after weighing all the options, his family chose to withdraw care and the patient “expired peacefully” according to his discharge summary.
Doc, you gotta help me. Help. Help. Help.
When I went into medicine, my decisions were fueled by lofty dreams of helping and saving people. Would I have chosen this path if someone had instead framed it as,
“How would you like to be involved in someone’s worst day of their lives for most of your working life, and they’re going to look to you for all the answers?”
I stood there helpless, recognizing the fear in his eyes, knowing how to save him but unable to do so in my outpatient clinic without the resources of a hospital.
This is the curse of primary care. Everything we do is to prevent things from happening 10, 20, 30 years into the future – strokes, heart attacks, diabetes. Primary care doctors build trust and relationships. We change lives in small but tangible increments. But, when something that is actually critical pops into the clinic, we are crippled by the outpatient setting. As a result, we refer to other providers to do the actual saving.
But, those ER and ICU doctors didn’t know this patient like I did. To them, he was just another person on their to do list. They didn’t celebrate his personal victory of getting down to only 2 bottles of wine a day. They didn’t see his tree trunk legs finally fit into his shoes.
He wasn’t their first.