When a patient asks for the unusual

Here’s the conundrum:
Let’s say your patient’s insurance has decided that they will pay for 12 sessions of reiki for, say, back pain. All that the patient needs to have this therapy approved and paid for is their primary care doctor’s referral.

Let’s say that doctor has examined the evidence, and found reiki to be unsupported for any use. You explain to the patient the correct evaluation and treatment of low back pain, and explain that you will not be making the referral.

The patient is angry. She doesn’t want to have to pay for the treatment out of pocket.

What would you do?

Now let’s say you have a patient with cancer. It’s incurable, but the patient is receiving several standard and experimental treatments to prolong his survival. Otherwise, same scenario. Now what?

Never say “hopeless”

I can’t tell you the number of people who complain to me about having their hope taken away. Exactly what this means, though, isn’t always clear.

Sometimes an oncologist will tell them (so they say) that they have a month to live. Sometimes their cardiologist tells them (so they say) not to travel to their grandson’s Bar Mitzvah. Sometimes the spine surgeon tells them their back will always hurt, no matter what. So they say.

Patients tell me a lot of things. I’m not always sure what other doctors really told them, but what is important is what the patient heard. The oncologist might have said “incurable” but followed it up by “but treatable for years.” I suspect after hearing “incurable”, not much else gets in.

One thing I’ve finally learned after a number of years is that patients actually listen, even if you don’t think they do. What they hear is a different story. Depending on their mood and circumstance, they may hang on single phrases, subtle inflection, the way your eyes dart.

To be an effective physician, you must also be an actor of sorts; not in the sense of pretense, but in the way you pay attention to everything your words and body do, and how your audience reacts.

I had a patient a few years back, a very pleasant older woman, who came to me with difficulty in swallowing. There can be a number of different reasons for this. A radiographic study, however, showed a lesion in her esophagus that was almost certainly cancer. Normally, I won’t speak on the phone to people about such things, but she and I had decided for various reasons that this would be the best way to communicate. I told her about the results:
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Why hospice matters

I recently lost a close family member to cancer. She was old, she had been ill a long time; it still hurts. But in her dying, she made some wise choices. She was a very bright woman, and retained her mental capacities right up until the end. This gave her the opportunity to decide how she would approach death. She chose to enroll in hospice.

Hospice is widely misunderstood, partly because of the way we misunderstand death in the U.S. Instead of an inevitable part of life, death here is seen as an enemy to be fought at all costs, no matter the futility. Intensive care units, which were designed to care for people with a severe but potentially curable illness are full of the incurable—people on ventilators who will never breathe on their own again, who will never have a significant interpersonal interaction again.

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Last night I was reading a book to my daughter at bedtime. It was all about a kid who had chickenpox. I looked at my wife and said, “this is a bit outdated.”

“So what, it’s cute,” she accurately replied.

Wow. I hadn’t thought about it much lately, but chickenpox in the U.S. is disappearing rapidly. “Pox parties” are gone. Kids aren’t missing weeks of school. Pediatric ICUs aren’t seeing much varicella pneumonia. Now that I think about it, a number of important lessons I learned in medical school are becoming historical oddities. On my pediatric rotation, we learned to watch for the ominous “thumb print sign” on lateral neck x-rays, along with the stridor and drooling that accompanies epiglottitis. Thanks to the Hib vaccine, this entity is now very rare.

Of course, these childhood diseases still exist. Mumps is still with us. Measles waxes and wanes. And pertussis (whooping cough) is alive and well.

In my work as an internist, I see a lot of coughs and colds. They are very common, and a lot of my time is spent dispensing grandmotherly advice and helping people understand why antibiotics are not going to cure a virus. But not every cough is completely benign, and much of the teaching I do is helping young doctors to distinguish the difference.

Over the last year, I’ve diagnosed around 4 cases of pertussis. Ideally this shouldn’t have happened. Pertussis is relatively harmless in adults, but it is very dangerous to young children. Pertussis used to be a widespread disease. It is fairly benign in adults, causing a bronchitis-like illness. But children are at high risk of becoming very ill. The greatest risk is for children under 6 months old. If they get pertussis, they almost always need to be hospitalized. Pneumonia occurs in about a quarter of them, seizures and brain damage in about 3-5%. Death rates are about 1-2 in 1000. Serious allergic reactions to the vaccine occur in less than one in 100,000 cases.

If you are unvaccinated and live with someone who has the disease, you will catch it (80-100% transmission rate). Vaccination prevents disease, and when it does not, it lessens the severity. Most importantly, vaccination prevents transmission to those most vulnerable…babies. They are too young to have developed proper immunity. So getting vaccinated is not just for personal protection; it is for the protection of others.

Vaccination is safe and effective…we already have a way to fight this. The problem is, the vaccine’s effects do not last forever, and if an adult catches it, it looks a lot like a common cold; there is no way to identify and isolate the infected to prevent transmission. Vaccinating everyone protects our most vulnerable, and failure to vaccinate everyone puts our infants at risk.

Since pertussis immunity wanes with time, a new adult vaccine containing acellular pertussis is now available bundled with tetanus and diphtheria (if you’re under 65). When you go for your next tetanus shot (every 10 years), ask about it. By vaccinating yourself and your family, you can help prevent a child from getting ill. You might even save a life.

CDC Pertussis Information

More pertussis information

Off to work…what micro-organisms will I encounter today?

I’m off to the walk-in clinic in a little while. If past experience is a useful guide, I will see at least a dozen people with various respiratory viruses causing colds, conjuntivitis, bronchitis, and sinus infections (offending viruses include adenovirus, rhinovirus, and many others). Generally, the folks giving a home to these bugs need grandmotherly advice. Part of my job is to determine which of these patients might have an infection with Group A beta-hemolytic Streptococcus, Bordatella pertussis, Mycoplasma pneumoniea, Steptococcus pneumoniae, influenza, or other potentially bad actors.

There will probably be a few cases of gastroenteritis, most caused by enteroviruses like echovirus and norovirus, but I have to keep in mind other possibilities like Clostridium difficile, and Salmonella.

There will certainly be some sexually transmitted infections with organisms such as Neisseria gonnorrheaea, Chlamydia trachomatis, and Trichomonas vaginalis. That’s a fun one.i-9cce71fcd0e7cae0d792aad847f72795-Trichomonas_Giemsa_DPDx.jpgMost of the time, we have to make educated guesses as to which microorganism we’re dealing with, but we can see Trich right away under the microscope.

Of course some of the friends I meet today might not be “micro”-organisms. Scabies and pubic lice sometimes grace my exam room.

Often enough, I treat small abscesses. Community-acquired MRSA has become so common that I usually pick an antibiotic to which it is susceptible, rather than the usual MSSA coverage (although, sometimes removing the “good and laudible pus” is enough).

Occassionally, I will meet a problem that can’t be dealt with in the clinic. Last week a man walked in with leg pain and shortness of breath. He had just returned from an extended car trip. His let was swollen, his lungs clear, and his EKG showed a pattern or right heart strain. We sent him straight to the ER where he was diagnosed with multiple pulmonary emboli and admitted to the hospital.

And this is part of the fun of primary care medicine. Seening a large variety of problems, sorting out the small problems from the dangerous ones, and passing on that knowledge.

I hate orange urine

Urinary tract infections (UTIs) are a very common problem, especially in women. The link provided offers some very good information, but briefly, women’s urethrae (the tube the urine comes out of), are closer to the rectum than those of men (who have a built-in “spacer”). This allows bacteria from the colon to creep over to the urinary tract and cause burning, pelvic pain, frequent urination, etc. I treat UTIs daily. Most are uncomplicated, but some are quite serious (usually in the elderly and chronically ill). As medical problems go, I love UTIs. When a healthy, young woman comes in with the usual symptoms, a quick test can confirm the diagnosis, and, usually, three days of inexpensive antibiotics fixes it. The patient is happy, I’m happy, everyone’s happy. But then there’s the orange stuff.

A few years back, a medication called “phenazopyridine” became more widely available as an over-the-counter drug. It is marketed to treat the symptoms of UTIs. It turns urine and other body fluids bright orange. This medication is useful for reducing the symptoms of UTIs, but does not cure them. The FDA does mandate certain labeling for the OTC preparations, but I can tell you from experience, the subtlety of this distinction is, well, subtle. Fortunately, you don’t have to rely on my experience. Someone bothered to study the question. Most patients do not realize the difference between treating the symptoms and treating the disease. This leads to delay of treatment, and the infection can become more serious. To add insult to injury, phenazopyridine’s orange pigment interferes with the most common tests we use to diagnose UTIs.

In discussions of medical ethics, the concepts of “paternalism” and “patient autonomy” are often thought of as being in opposition to each other. It is sometimes in the name of autonomy that medications are made more easily available to patients by skipping the physician prescribing process. (Also, over the counter meds are quite profitable). This can be very useful for medications such as ibuprofen, or Plan B (post-coital contraception), but any time you cut out the expert, certain risks accrue. Paternalism isn’t the opposite of autonomy. The two work together. Patients see me for my expertise. They don’t consult me about movies, art, or (thankfully) religion—just medicine. They do this because I’m the one with the training. Giving a patient knowledgeable advice is not paternalistic—it’s what they came here for. I don’t paternalistically command my patients to do anything. I dole out advice, and they are free to follow it or not.

Orange urine not only removes the expert, it fools the patient. It does not increase autonomy, it actually decreases it by deceiving the patient, perhaps causing them to become more ill.

<End of rant>

God in the exam room

My profession does not allow me the luxury of suffering fools, but neither does it allow me the luxury of always being blunt in my beliefs.

Readers may have noticed a slight tendency toward snarkiness, especially when dealing with woo. I refuse to pull punches when it comes to people peddling quackery. Religion is different.

In my work, my religious beliefs (or lack of them) are irrelevant, and I don’t intend to “confess” to either belief or non-belief to my patients. Being a physician is not the same as being an academic scientist. As a bench scientist, your cell cultures don’t really care who you are—not so with patients. Patients are acutely interested in their doctors–their marital status, if they have kids, where they grew up. I spend quite a bit of time just chatting with my patients. Mrs. S. always likes to see the latest pictures of my daughter, and I oblige her.

Not that I don’t enjoy showing off my kid, but there is a greater purpose to these activities. Patients who know you and like you are more likely to trust you and follow your advice. That’s why I usually go along with whatever my patients say regarding religion. That’s not a cop-out, it’s real medicine.

People are different from primers and test tubes. They require comfort and trust. I never mock (or even contradict) their religious beliefs (I save that for cafe arguments). Telling a cancer patient that God is a fairy tale is not only wrong, it’s cruel.

Patients believe, and nothing a doctor says is going to change that. Yes, sometimes these beliefs get in the way of good medical care, but more often they are benign, strongly attached to the patient, and their removal would cause more harm than good. Primum non nocere.

There are lots of things in this world that I don’t believe in—fairies, God, good Chinese food in the Midwest—but my patients can believe whatever helps them get by (except the Chinese food thing). It’s my job to heal, not evangelize.

That being said, whenever my patients show me the latest bottle of get-well potion they’ve purchased, I gently explain why it won’t do them much good. I won’t take God away from a patient, but I’ll happily separate them from Gary Null.

Some skills in medicine are harder to teach

Teaching facts is easy. Medical students eat facts like Cheetos, and regurgitate them like…well, use your imagination. Ask them the details of the Krebs cycle, they deliver. Ask them the attachments of the extensor pollicis brevis, and they’re likely to describe the entire hand to you. Facts, and the learning of them, has traditionally been the focus of the first two years of medical school. The second two years deals with putting facts into action. Teaching medical students and residents is very different from being a school teacher, something with which I have first-hand knowledge and experience. Fetal doctors want to learn…they’re too scared not to. In general, give a med student a book, and she’ll read three, and write a paper before you see her again. But some things in medicine are harder to teach.

Medical education in America underwent a revolution at the beginning of the 20th century, when texts were written, schools formed, and methods standardized. Now, 20 some-odd years into the evidence-based medicine revolution, medical education is improving once again.

MarkH describes a method being tested to teach doctors to think under pressure. The big difference between this and the way these things have traditionally been done is that people are measuring them. They are forming hypotheses about learning and testing them. And it’s about damned time.

My current teaching responsibilities are primarily those of teaching nascent internists how to practice their profession. The facts are (usually) there, but the judgment is not. This is also a field ready for evidence-based evaluation, but some things really do require repetition and mentoring.

I supervise residents at an outpatient clinic. They see their own patients, and they see patients who either walk in or make appointments for immediate problems. Treating patients you know is one thing—treating a complete stranger is another.

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Dying Sucks (so I’m told)

I’ve been fortunate enough to have excellent health, despite poor diet and lack of exercise. I’ve never really been confronted by my own mortality. In my business, however, I am surrounded by others’ tragedies.

I did my training in a large city that attracts lots of young people from my home town. They tend to form an informal network there, and people keep loosely in touch.

So, I wasn’t surprised when a doctor I knew called me.

“Do you remember K.?” he asked.

“Sure, why?” I responded cautiously.

“She’s in the hospital with a big liver tumor. You might want to go see her.”


K. was always a vivacious girl (now a woman of 30). She was known for her smile. I was happy to be able to see her again after so many years, but not under these circumstances.

I walked into her hospital room. Her parents were there, and she was lying in her bed, recovering from a massive surgery. We chatted a bit, caught up on mutual friends, but she was pretty doped up and I let her rest. I spoke with her folks, let them know that I pretty much lived in the hospital, so if there was anything they needed, etc.

The prognosis for a tumor like hers is horrible, and she knew it. But, given her age and her attitude, she was not going to let her story end there.

She researched the latest treatments, went to specialty centers, enrolled in experimental protocols. But the tumor came back.

We spoke occasionally. We had never been close, but I thought maybe I could provide a unique ear for her–someone who wasn’t afraid to talk about illness and pain; someone who cared, but wasn’t a close friend or family member. Someone who was less likely to cry or pull away out of pain or emotional discomfort.

As the disease progressed, she moved back home. We spoke on the phone from time to time. She had a falling out with a close friend–she was dying, her friend was getting married and moving on with her life, and they couldn’t seem to communicate across that divide.

When I was home for the holidays I stopped by to visit her. She was thin. Very thin. But that smile still lit up the small room. She had given up futile treatments by then, and she knew she was dying. Abdominal pain and nausea we constant companions, but she found significant relief with marijuana.
We sat on the couch and talked about it…about pain, about pot, about friends. Then she looked at me and said, “You’ve seen people die of liver cancer?”


“What’s it like? To die of liver cancer? What happens?”

She didn’t need my tears, she needed my knowledge. I took a sip of water and a deep breath.

“Well, most of the people I’ve seen slip into a coma. We give them whatever pain medicine they need. As the liver fails, it can’t process toxins. Eventually, you’ll probably fall asleep and not wake up.”

We talked like that for a while. I realized that despite our not being close friends, I was in a unique position. It is a kind of intimacy that isn’t quite a doctor-patient relationship and isn’t quite a regular friendship. It’s a relationship built on a horrible reality, that both people understand, but from very different perspectives.

I hugged her goodbye, and the next morning headed home.

She did OK for a while. A local massage therapist donated her time to help bring her physical comfort. Her family was wonderful. But some things are inevitable.

A few months later, I heard she died.

Death was inevitable, but she found a way to make it less horrible for her than it could have been. It’s a lesson I can’t forget.