I have been thinking a lot lately about why it bothered me so much that our patient died the other day. He was a terminal cancer patient (small cell lung cancer), so it was unlikely that he was every going to make it out of the hospital. I had little to no personal interaction with him in my 3 days of following my boss around during rounds. And then it hit me. It wasn’t that he died, it was how. My boss and I heard the code called over the system as we were walking up to round on the patients. Ward 42 room X, bed X. Ward 42- is that one of our patients? I think so. We hurried up and saw our team and 20 other various nurses and residents and students huddled in his room and in the hall. Things didn’t look good. 12 minutes later they got his pulse back. 12 minutes of him lying naked in front of a couple dozen strangers having his chest heaved in. And then he got to take a trip to the ICU. When I say I saw him “die” that’s not totally accurate. I left him in the ICU. I can’t be sure, but I highly doubt he had brain function left after being out for 12 minutes. I have to say, I think that is the absolutely worst way to die. With strangers in a lonely hospital room.
That’s what got me thinking about Carl.
Carl taught me more about medicine than I could ever learn from a book. He was my first patient.
At Case we are given a single patient to follow for our first 2 years of medical school. We can choose either a pregnant woman (and then we would follow her pregnancy and delivery and then the baby thereafter), or an elderly patient. It was a no-brainer for me. I love older people. I savored working at Milwaukee County Stadium and taking my breaks with the old guys talking baseball. Plus, I think that you can learn so much from older people. Not only because of their medical problems, but also because of all of the life experience that they have gained. Maybe it’s because my grandparents didn’t live very long into my life, but I could sit and talk to an 80-year old for hours.
I was VERY nervous the day I was to meet him for our first appointment. I knew absolutely squat about medicine. I had just started medical school and didn’t even know how to take a blood pressure (not that I’m much better now). I got there 45 minutes early and waited. 10 minutes later an older gentlemen walked into the door with a cane. Buttoned-down shirt and Khaki pants (as always from then on). Somehow I knew it was him. I had called him the night before to introduce myself. He looked at me and said
You must be Jodi
I had just met the person who would influence the rest of my career.
Carl was 76 was I first met him. Reasonably healthy, but had enough health problems to allow me to see him at least once per month. He was unbelievably intelligent. He had been the chair of the History department at Case before retiring a decade or so earlier. He was internet Savvy and liked to watch movies. He was progressive. Moved by one of his daughter’s good friends who was a lesbian, he was a subscriber of The Advocate (how many 76 year old heterosexual males do you know that would do that?). He was a veteran, but that is one thing that we never talked about. He didn’t use the VA system and didn’t want to bring back those memories. But everything else was open to discussion.
For 2 years I met with Carl once a month or so. He and I would get to his appointments a half hour early to talk about movies and history and politics. He became a dear friend to me. Then it was time to move on to graduate school. But I wasn’t ready to let Carl go. I asked his doctor’s if I could continue following him. They didn’t have a problem with it, but none of them thought I would actually do it. I think many MD PhD candidates have tried and failed to keep up their patient’s after leaving the medical school. But they didn’t have Carl as a patient.
I continued following him for the next year. As the year progressed I became more and more instrumental in his care. His heart failure had progressed, so now I would meet him at the door with a wheelchair so he didn’t have to walk to his appointments. I would wheel him back to his car when we were done. In a little way I’d like to think that I allowed him to keep his independence as his health worsened.
Then in October, after I had been following him for 3 years he got sick. Idiopathic pulmonary hypertension. It was bad. I found out from his primary care doc that he was going to be coming in for a cardiology appointment. I will never forget this. He came in on a gurney, brought in my 2 guys who worked for the ambulance. It was absolutely terrible to see him like that.
And then he saw me.
Who is that? The transporters asked
That’s my Angel he said
It still brings tears to my eyes just thinking about it
The docs put him on a medication that had to be delivered by IV. It was absolutely keeping him alive and he couldn’t have it delivered at home (he lived alone). So Carl was placed in a rehab facility.
I had gotten to know 2 of his 4 daughters because they would come to his appointments from time to time. They appreciated how I had helped their dad and knew that we had become close. That’s why I wasn’t surprised to get the phone call
Daddy has decided that he doesn’t want to continue the drug anymore. All of us (his daughters) are here and they are going to start tapering the medicine soon.
I’ll be right there
I got to the rehab facility at 3pm. All of Carl’s favorite people in the world were sitting around him (his daughters, who lived in 4 corners of the US and were very rarely ever together). He had already said goodbye to each and every one of them. I knew how important that was to him. When I got there they had just started tapering his meds and he was still awake. I told him goodbye and thank you for all that he had taught me over the years.
And then we waited. It was just his daughters and I. I played the role of his medical advocate and ran to get the nurses to up his morphine when the pain got bad. It was just a waiting game at that point.
Carl lost consciousness at about 5pm that night. For the hours that came next I sat with his daughters. We laughed and cried and shared stories about their Dad. We did the crossword. We both hoped and feared that it would end soon. But we knew that he was going to die that night. We knew because he told the hospice care people that he wanted to die that day. We all knew Carl. He would make it happen.
At around 11pm his breathing became shallow. I went to one side of the bed and held his hand. His oldest daughter went to the other side and held his other hand. For 45 minutes we waited. Every time his breath sounded more labored we would hold our breath. There were a lot of tears at the end. Then at 11:45 he passed away.
Some time later the girls took me out to dinner. We spoke freely, mostly small talk, but I felt like I was with old friends. And then they gave me a gift. It was a clock from their Dad’s apartment.
Don’t worry- it’s not a family heirloom. He just really liked it
It is a wonderful Frank Lloyd Wright designed piece that sits on my mantle. Every time I look at it I think of Carl. And I think of how I want to live my life and what kind of doctor I want to be.
I know that I won’t be able to hold all of my patient’s hands when they die, but I really wish that someone was there for them. And that is why it bothered me so much when the patient died on Friday. He didn’t have his family there. There were no friends. And he was alone. After seeing how peaceful and loving the end of life can be, it was terrible to see the juxtaposition.
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