A Country Doctor Writes:

The woman’s legs were so swollen that the indentation from my thumb squeeze was as deep as half my thumb. Her belly looked pregnant at sixty plus years but a recent ultrasound had shown no fluid and no change in size or texture of her already enlarged liver.

“There may be something else going on, I said. “Have you had any chest pain lately?”

“Well, yes, three weeks ago I had a pain here”, she said, pointing to her left upper chest. “It lasted three days, and I kept waking up and going back to sleep, hoping it would go away.”

“Has your breathing been worse since then?”

“Yes, but I thought it was because my belly got bigger.”

Her EKG showed q-waves in leads III and aVF, new since last winter, a sign of a possible old inferior myocardial infarction.

“It never occurred to me that it could have been a heart attack“, she said. “I should have known better.”

I have found that few people volunteer that they have had serious chest pain, so I ask at every visit with anybody who is at risk. Why is there so much denial about this?

“I didn’t want it to be my heart.” Her classic comment summarized my recurring observation.

I thought of a post I wrote four years ago, called Twenty Questions:

Adrian Bell didn’t look dehydrated, but his diarrhea had come and gone for a week and a half when I saw him a few weeks ago.

I saw a young woman the other day with severe and longstanding hidradenitis suppurativa. She knew very little about her disease. I logged in to UpToDate and printed out “The Basics”, a two page summary for patients, and the 18 page article for medical professionals. I showed her the pictures of what Hurley Stage II and III look like and we agreed she is probably a stage III. She had had one lesion lanced a few years ago and she had tried one topical agent. I suggested chlorhexidine, prescribed doxycycline and ordered a dermatology consultation to see if she is a candidate for more advanced medications and to help her learn more about her disease. I encouraged her to read the article and to ask the dermatologist lots of questions.

She seemed encouraged as we wrapped up our visit.

Back in my office, I clicked on the “Patient Education” icon and printed out the information that comes with every certified EMR. It was two thirds of a page long, in a large font with one and a half line spacing, and it said very little about her disease. I did what I often do – dropped it in the recycling box next to the printer.

Why print it if I was going to throw it away? Because we get Meaningful Use credit ONLY for patient education that is printed from the EMR. But since the handouts are so embarrassingly rudimentary, I click for credit and give my patients the real stuff from my personal UpToDate account.

This is how a lot of things work in today’s healthcare: Meeting some arbitrary requirement and then making sure the patients get what they really need.

Ellen Boulder filed a complaint against Dr. Kim and it was my job to handle it.

Her previous physician had retired and she had been reassigned to see Dr. Kim, who was trying very hard to limit his opioid prescribing.

Ms. Boulder had been on moderate doses of hydrocodone for years for osteoarthritis, lumbar disc disease and chronic sciatica after a failed back surgery. She had also been diagnosed with fibromyalgia.

Dr. Kim explained to her, and documented everything impeccably thoroughly in the medical record, that long term opioids have been shown to be less effective and carry greater risk for debility and death than non-opioid pain medications. He also explained that hydrocodone can cause a fibromyalgia-like condition called opioid induced hyperalgesia, which can be more debilitating than the condition the opioids were prescribed for in the first place.

He outlined a slow tapering schedule that he printed out for her and he prescribed a starting dose of gabapentin. A few days later, she had called and reported severe drowsiness, generalized swelling and tingling all over from the gabapentin. She refused to take any more of it, but wouldn’t come in to document her swelling and talk about what to do next because her car was in the shop. Dr. Kim prescribed 10 mg of amitriptyline at bedtime until her next appointment and didn’t hear from her until one week before her hydrocodone, at the lower dose, would have been due for a refill.

When she called and left a message that she needed a refill, Dr. Kim sent the message back to his medical assistant with the reply “not due until next week”.

That’s when the barrage of noisy phone calls started, back to the medical assistant, to the on-call doctor that evening, to our nursing supervisor and care coordinator the next morning and to our Chief Operating Officer just after lunch.

By 4:30 it was my turn. My COO sent me an urgent message to review the situation and deal with the patient’s concern. Ms. Boulder wanted to fire Dr. Kim and get a different provider.

On the phone with me, she spoke softly. She described how she had struggled to remain functional with her chronic pain and never mismanaged her hydrocodone. Then she proceeded to tell me that her brother had been taken off his pain medications a few years before and had turned to heroin. Maybe she had no other choice herself if she couldn’t stay on the hydrocodone. And Dr. Kim had given her no warning that she was supposed to come off it this quickly.

I told her I had read the detailed instructions Dr. Kim had printed out for her about how to reduce her hydrocodone.

“But I had to take more than he wanted me to because of my pain being out of control, I went from a “5” to a “10” with just two pills less per day.”

I answered: “Well, you’ve been through our pain program, you know that our pain experience is influenced by our frame of mind, you’ve been upset about the taper and may have expected to hurt more….”

“My pain is real”, she interrupted. “And if I can’t have my hydros, I may have to turn to heroin, just like my brother. He got into trouble when he was on heroin, lost his job and his family. Then he went to rehab and was clean for a year but his pain was unbearable. Then they prescribed amitriptyline for him, just like Dr. Kim did for me, but I won’t take it, because – you know what happened? He killed himself with it, it’s more dangerous than a few measly hydros every day ever was. I refuse to take that kind of medicine.”

I answered: “I know Dr. Kim is more than willing to work with you at finding other ways to manage your pain.”

“But you’re the Medical Director, you can tell him not to cut me down.”

“No, I can’t, and you know that this is something every doctor is doing now as we see what the long term risks and consequences of opioids are.”

“But Dr. Kim doesn’t listen to me. You do, would you see me instead? I’m afraid of the kinds of medicines he wanted to give me, and I don’t want to end up on heroin, like Johnny.”

“All the doctors here have agreed not to go against a colleague’s tapering of opioids, because that is the road all doctors are on now, there are only some small differences in how fast we are going.”

“So are you saying I have to become a heroin addict?”

“No, I’m saying…”

“None of you doctors is taking responsibility for my pain, and it is your job to do that”, she interrupted.

“Actually, our first responsibility is to do no harm”, I answered. “Pain relief that is risky or dangerous doesn’t always help, it can hurt and we know that now.”

There was a long pause.

“I’ll just have to find another doctor”, she finally said.

“I’m afraid you’ll hear the same words everywhere you go these days”, I answered. “Times have changed.”

After another pause, she said “thank you for at least calling me back”, and hung up.

I take pride in my dermatological diagnostic prowess. The medical establishment seems not to.

Recently I saw three patients in just a few days with concerns about similar skin lesions that were all dermatofibromas. I couldn’t help notice that my EMR Diagnosis search came up blank. I had to pull out my iPhone and google the code. This happens often enough that I don’t have time to think much about it, but making the same search almost three days in a row, I registered some frustration.

Dermatofibromas are now bundled together with several other dermatological diagnoses that used to be pearls of pride in primary care, such as halo nevus, dysplastic nevus, histiocytoma and neurofibroma.

I grumbled internally because I knew that there was an ICD 10 code for much more specific and esoteric diagnoses, like drowning while diving for pearls.

Here are some examples of these phenomena:

I understand why: Medical coding doesn’t serve primary care clinicians anymore. Instead, it is the foundation for research into the epidemiology of infectious diseases, cancers and accidents. There’s simply no money and little interest in diagnostic accuracy for non lethal and non litigable medical conditions.

I went to a thought provoking series of talks about dementia the other day.

One of the first PowerPoint slides listed “Early Diagnosis” as being important.

Having watched my father in his final days of end stage Alzheimer’s disease seven years ago, I have no sympathy for screening the general population for this gruesome disease. Why would anybody in their right mind want to know that such is the fate that awaits them?

If you have no symptoms, and if you are enjoying your family, career, community and intellect, could you still appreciate whatever time you have left on this planet if someone told you that you are doomed to die emaciated, nonverbal, incontinent, immobile and contracted?

Screening for incurable and essentially untreatable conditions is only cruel and meaningless, I challenged the speaker.

She clarified her viewpoint by saying that she didn’t mean to make the diagnosis as early as possible, but rather in a timely way so that patients and families can start making decisions.

Thinking back to my own practice, I know that I have perhaps not always called a spade a spade by spelling out the diagnosis of dementia and putting it on the problem list until late in the course of the disease. I can see that it is my obligation to do that when symptoms are only beginning to threaten a person’s judgment and abilities. Making sure Advance Directives are in place is important, and a couple with one spouse showing signs of mild dementia probably shouldn’t buy a two story home far away from public transportation. The speaker also advised estate planning and considering options to pay or qualify for aid for long term care.

Another topic was driving, a situation where I certainly have been the non-family bearer of bad news many times (see my post “A Very Careful Driver”).

So, I did mellow in my resistance to labeling patients with dementia before they become debilitated.

In the same vein, what keeps me from putting other emotionally loaded labels on the problem list, such as:

F10.20 – Alcohol dependence, uncomplicated
Z72.53 – High risk bisexual behavior
F52.22 – Disorder of sexual arousal, female
N52.9 – Erectile dysfunction

One thing is the patient’s overall perception of privacy when the (mandatory) visit summary contains a loaded diagnosis. Specifically, in a very small community, there is the possible concern that staff members without direct clinical involvement (front desk staff) may see such diagnoses. And, perhaps most importantly, with health care law changes in our country’s future, concerns about future uninsurability.

Because making a diagnosis isn’t just a matter between me and my patient anymore.