Thinking back...

Stephen

Steven was 48 years old. Just a couple of years older than me. He had chronic hepatitis C, Crohn’s disease, protein-calorie undernutrition, chronic nonmalignant pain, panic attacks, depression and painful peripheral neuropathy. Most recently he had an emergency cholecystectomy that was complicated by rhabdomyolysis and acute renal failure.

He had previously “fired” another doctor in my office. He had also been fired or been asked to go elsewhere by many colleagues in other offices.

He “choose” me about three years ago after we had a good encounter on a day his previous doctor was on vacation and I was able to spend a good deal of time with him because I had had some cancellations. Also, I was probably more relaxed appearing due to thinking that I wouldn’t have to follow him long term once his doctor returned from vacation. I was mistaken.

His mother called the next day to see if I would agree to take him on as a patient. I started my new acting job the minute I said, “oh sure, I would be happy to be your sons’ doctor.” I really wanted to say, “no, I don’t want to try and take care of your demanding, complaining, chronically ill son who has already alienated and terminated relationships with nearly every other primary care and specialist in town,” but didn’t.

Most mornings, it seemed, I started my day with a note to call him. I saw him frequently for scheduled visits. He would also just show up unannounced on other days and demand to speak with me. The front desk staff hated to deal with him due to his angry tone, and my nurse would cringe at just the sound of hearing his name, as I would.

He was very intelligent. Unfortunately, he was a truly miserable person to be around. He would spend hours on the internet researching traditional and alternative treatments for his different medical diagnoses. Most doctors found him “impossible.” Whenever I referred him to a specialist, I hoped for a positive outcome. Shortly thereafter, however, I would get either a letter or a call from the consultant letting me know that follow-up with them wasn’t necessary. One such note from a GI specialist:

     “The patient is talkative and argumentative. Through the internet, he thinks he knows everything there is to know about Crohn’s disease. I offered him a colonoscopy to re-evaluate the status of his disease and he declines. He should be sent for psychiatric evaluation and treatment.”

When I saw yet another note to call his home, the “G” rated version of my thoughts was “gosh darn it, this guy is driving me crazy!” I had just talked to him yesterday for a long time. I had also spent an hour with him in the office two days ago.

I called. His mother answered. She let me know that Stephen had died in his sleep. His mother graciously thanked me for everything I had done, and we had a wonderful talk about his life. I don’t think she realized that I had, at times, daydreamed and looked forward to the day that I wouldn’t be burdened by having him as a patient.

Stephen’s dead. He can no longer bother me, but I think about him often. I drive past the apartment where he lived with his mother on the way to my office.

I’m ashamed to have harbored such ill feelings while he was alive, but at the same time, I’m proud to have had a long-term relationship with him when so many others with health care providers had failed. In retrospect, the time I spent with him represented only a small fraction of my practice, or my life, for that matter.

I couldn’t let him know how I really felt. In my private life I can choose those with whom I associate. As a doctor, I can’t or shouldn’t choose, especially those who have nowhere else to turn. Appearing to care and trying to remain his advocate was the least that I could do for him.

Difficult patients are usually not only chronically ill but may often be demanding with poor communication skills. They are often just mad at the world.

When another Stephen chooses me to be his doctor, I hope I will step up to the plate again.

Although caring for him seemed like a very long gig at the time, it really wasn’t.