Friday Reflection 28: Four of the Things Patients Have Taught Me

CT was an 83-year-old woman with temporal arteritis. She was diagnosed four years earlier. Multiple attempts at weaning prednisone were unsuccessful.

It is unoriginal to point out that doctors learn from their patients. Deliberate practice is learning from the daily, often mundane, tasks in medicine. We read about diseases and their associated diagnostic tests and treatments. We register how people respond to treatments and our counsel. We listen to how they are affected by diseases, how they tolerate medications, how they describe symptoms, and what they have learned about a disease in their decades of experience. Though I have learned countless things from my patients, a few lessons were so powerful, so extrapolatable, that I forever associate them with an individual.

I met CT early in my career. I was proud that I made the diagnosis of temporal arteritis after her presentation had stumped doctors in an urgent care, an emergency room, and in a rheumatology clinic. I learned two things from her: one about diagnosis, the other about management.

Temporal arteritis, also called giant cell arteritis, causes inflammation of arteries, particularly branches of the internal and external carotids. It usually presents with headaches and non-specific symptoms such as fatigue and fever. It can cause the interesting symptom of jaw claudication. (I have heard a patient say she needed to stop chewing Cheerios three times during breakfast to rest her jaw.) The most dreaded complication of temporal arteritis is blindness, owing to its effect on the ophthalmic arteries. Clinical findings and blood tests hint at the diagnosis, but the only truly confirmatory test is a biopsy of the temporal artery – a small procedure but a procedure all the same.

By the end of the day that I met CT, I was pretty convinced of her diagnosis. Her history was classic, her exam suggested no other diagnoses, and her sedimentation rate (sensitive but non-specific for the diagnosis) was abnormal. I started prednisone empirically and called a vascular surgeon to arrange for a biopsy of her temporal artery.

The next day I told a colleague about the case and he said, “Why do you need the biopsy? It sounds like you’ve already made the diagnosis.”

I was a little embarrassed. Diagnostic reasoning is supposed to my specialty. My “pretest probability” for temporal arteritis in this patient was easily 85%. Given that the sensitivity and specificity of a temporal artery biopsy is quoted at 85% and 100%, a positive biopsy would rule in the disease but, even with a negative test, the patient would be more likely than not to have temporal arteritis. I can’t remember the details of why I went forward with the test, but I did, and it was positive. She responded to treatment with prednisone and was thankful at a follow-up appointment three weeks later.

What did I learn from her?

1.      Diagnostic tests give you more than just a diagnosis.

Over the years following her diagnosis, CT developed an impressive array of complications from the prednisone: hypertension, diabetes, a spinal compression fracture. I even remember her saying, at an appointment, “I never had acne as a teenager and now here I am, in my 80’s, with acne!” The absolute diagnostic certainty that the positive biopsy provided overcame my temptation to retrospectively question the diagnosis and abandon therapy based on the adverse effects.

2.      Patients are the ones who take the medication; they should weigh the risks and benefits.

Once CT was in remission, I began to wean her off prednisone. Every time we got from a dosage high of 60 mg daily to one of 15 mg daily, her headaches would return and her lab tests would confirm recurrence. She did not like any of the alternative treatments. On my fourth attempt to taper her dose, she said, “Dr. Cifu, can’t you just let me take 20 mg each day? I am 84 years old; I feel good on the medication; I am too old to worry about side effects that might affect me in five to ten years. Please just let’s leave the dose where it is and worry about other things. By the way, how is your son?”

We adjust our treatment goals for people with hypertension and diabetes based on their age and prognosis, but CT reminded me that every treatment decision, whether yes or no, this or that, or a lot vs. a little should be negotiable.

MM was a 63-year-old woman admitted to the hospital to participate in a phase 1 clinical trial. She had been diagnosed with breast cancer in her late 40s and now had widely metastatic disease. All standard therapies had failed her.

When I admitted MM, I was an intern rotating at the cancer hospital affiliated with my primary hospital. My resident explained that it was possible she would not survive the hospitalization, and that there was virtually no chance she would survive the next six months.

MM also had had coronary artery disease.

As part of her admission orders, I placed her on a “low salt, cardiac diet.”

She had the nurse page me to her bedside. She addressed me as you might address a 7-year-old, “I was told you put me on a cardiac diet. That can only mean you are an optimist or an idiot.  You do understand that I am dying? Do you really think that a cardiac diet will make me live longer? It will only make me unhappy.”

3.      Well-informed adults should be allowed to make what seem to us doctors like bad decisions.

I have extrapolated the lesson that MM delivered. Her decision to choose bad hospital food over terrible hospital food was not a bad decision. The only bad decision was mine in prescribing a cardiac diet. The tongue-lashing I received made me realize that doctors assume too much of the decision making. We may do it because we think we know better, or because we think the issue at hand is unimportant, or because we don’t think the patient should be bothered.

I take care of adults. My job is to provide information and to suggest diagnostic approaches or therapies. Usually, the course that I suggest is acceptable to the patient, sometimes with a bit of fine tuning. When a patient wants to make what I believe to be a bad decision, my role is to explain why I think theirs is the wrong call. Once I am sure that they understand the decision, I have become comfortable telling people, “I think you are making a bad decision, but it is absolutely your decision to make. I am happy to discuss it further at any time in the future.”

What MM taught me extends to issues that often cause angst on the inpatient service. I have come to accept people going outside to smoke while they are in the hospital, running home between antibiotic infusions to feed their cat, even having their usual glass of wine with dinner during a long hospitalization (though I recently got into trouble for this one).

MH was a 33-year-old woman who presented with what we often refer to as an “ambiguous illness.”

I won’t specify her illness, but there is a long list of what it could be: fibromyalgia, long COVID, myalgic encephalomyelitis/chronic fatigue syndrome, hypermobile Ehlers Danlos syndrome. These are diseases that are morbid, worsening a patient’s quality of life, sometimes to the point of disability. Although all are very different diseases, their similarities are that they lack definitive diagnostic tests; many of the symptoms are subjective; and our understanding of their pathophysiology is poor. We also lack effective therapy for any of them.

MH is remarkable mostly because she has been my patient (and teacher) for 25 years. Our relationship has shown me all the ways that we in medicine can do a poor job caring for people with ambiguous illnesses.

4.      There are two ways that care for patients with ambiguous illnesses goes poorly and one way it goes well.

1. It’s the doctor’s fault. Caring for patients with ambiguous illnesses is something for which we are poorly trained and for which we generally lack effective therapies. Management takes time, effort, and personalization. For all these reasons, doctors often “give up” admitting, either verbally or through body language, that they have nothing left to offer in terms of diagnosis or treatment.[i] Because our science lacks an adequate pathophysiology for the disease, the doctor will suggest that most of the symptoms are not “physical symptoms.”

2. It’s the patient’s fault. Sometimes the doctor does a good job. She keeps an open mind, evaluating new or atypical symptoms, always remembering Hickam’s dictum in addition to Occam’s razor. She recognizes that there will be no therapeutic magic bullet but is willing to experiment with different therapies and accept solutions that the patient identifies. She admits that there is much we don’t understand but is willing to work with the patient for as long as the patient desires. Successful care, however, requires patient cooperation. Sometimes, the patient is unwilling to accept the reality of the situation and is unsatisfied, even angry, with the doctor for her failure to offer a solution. He constantly asks for more tests, unable or unwilling to accept that the ambiguous disease explains the symptoms and focuses on the diagnostic uncertainty rather than the therapeutic challenge.

3. Then there are the times that the relationship goes as well as it can. The doctor recognizes medicine’s shortcomings and is honest about them. He says, “We have done a thorough evaluation and I am pretty sure the diagnosis of ‘the ambiguous illness’ is correct. However, since we have no gold standard diagnostic test, I will keep an open mind and revisit the diagnosis if things change. Although I cannot be completely sure what is causing your symptoms, I know they are real. I think we should focus on symptom relief. I will work with you to control your symptoms as best we can and I am open to your knowledge, wisdom, and research.” The patient understands this is the state of our understanding and care, is able to accept the uncertainty that living with an ambiguous disease entails, and works collaboratively with a willing physician.

The number of things I have learned from patients could fill a book. These four lessons are ones that I directly associate with four particular patients. I think of the lessons when I see these patients, and think of the patients when I put what I have learned from them into practice.

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[i] Doctors often exhibit the serum rhubarb bias here. They do not consider other diseases or further evaluation, thinking, “every test has already been done. We’ve even ordered a serum rhubarb level.”