Today would have been easier if I did not give a damn. Easier if patients were clients. Easier if medical advice was causal suggestion. Easier if I believed that patients were solely responsible for their health. Easier if suffering was not real. Much easier, if I did not care.
However, despite the popular movement from “the doctor knows best” towards shared decision-making, I feel responsible for my patients. What happens to them is very important to me. I mean this not as an objective definition of a doctors “job.” I am talking about the personal love of a caregiver for his community. Therefore, while I respect the freedom of each patient to control their own future, sometimes when they exercise that right it hurts.
First, there was my patient who received multi-agent complex chemotherapy and then vanished for three weeks. Despite severe mouth sores, fevers, rapid weight loss, numbness of his feet and daily vomiting, he did not call. He had attended chemo class, had received written instructions, and had at least six emergency phone numbers (and my email). Nonetheless, he did not reach out. On one occasion, one of my staff even spoke to him by phone and he did not mention the disaster. He just suffered and deteriorated. Now, I need to stop his treatment and can only try to salvage what remains of his frail health.
If you are reading this then you are already well aware of the current concussion crisis in the NFL. No matter where on the spectrum your opinions lie regarding this topic, there is one question that still remains: How did we get here? Surely if something has gone wrong then there must be someone to blame for it. Was it the league’s fault? The coaches? The players? The doctors? Maybe it is the injury itself that’s to blame? Perhaps it was just the perfect storm of a number of factors that put us in this situation? To truly get to the bottom of this, it is important to have a better understanding of the doctor-patient relationship. Not just in general, but specifically as it applies to concussed athletes in the NFL. Ultimately we may not find blame here, but we should at least shed some light on the realities of the situation.
As a sports medicine physician, I have taken care of thousands of concussed athletes at all levels. Eight year old hockey players, high school soccer players, collegiate football players, professional moto-cross racers and skaters, you name it. For all of them, the doctor-patient dynamic is similar. However, for the NFL players, that dynamic is entirely different. Let’s begin by looking at the usual non-NFL doctor-patient relationship.
A few weeks ago I called a neurosurgeon to discuss a patient’s recent headaches. My patient had been seen in the emergency room several days prior with the worst headache of his life. A complete work-up had not revealed a cause for the headache. Although he was found to have a small aneurysm on CT angiogram, there was no evidence of bleeding by lumbar puncture. The story, however, was slightly more complex than this. There had been several other findings that remained unexplained. One of the findings led me to discuss the patient’s case with a cardiologist. My patient had also undergone cervical spine decompression surgery several months prior to treat cervical myelopathy. I wanted to engage the neurosurgeon and get his professional opinion about my patient’s headache, which had now recurred several days after his ER visit.
The surgeon was cordial, but about 5 seconds into my story he seemed inpatient and interrupted me. “I heard about this guy,” he said, “What he needs is to be seen by one of our neurovascular specialists.” I had more I wanted to say, but the doctor did not seem to want to listen. I raised my voice slightly, interrupted him before he had a chance to end the conversation, and bulldozed through, telling the rest of the story in about two minutes. “Now we’re talking,” he said, as I explained further about a family history of clotting and my concern about a dural thrombus as a potential etiology. Together we formulated a plan that I was satisfied with–though the interaction left me with a feeling of unease.
I saw a gentleman in my office recently. He was having severe pain radiating from his lower back, down to his calf.
I was about to describe my plan to him when he interrupted me saying, “I know, Doc, I am overweight. I know that this would just get better if I lost the weight.” He hung his head down as he spoke and fought off tears.
He was clearly morbidly obese, so in one sense he was right on; his health would be much better if he would lose the pounds. On the other hand, I don’t know of any studies that say obesity is a risk factor to ruptured vertebral discs. Besides, he was in significant pain, and a lecture about his weight was not in my agenda. I wanted to make sure he did not need surgery, and make him stop hurting.
This whole episode really bothered me. He was so used to being lectured about his obesity that he wanted to get to the guilt trip before I brought it to him. He was living in shame. Everything was due to his obesity, and his obesity was due to his lack of self-control and poor character. After all, losing weight is as simple as exercise and dietary restraint, right?
Perhaps I am too easy on people, but I don’t like to lecture people on things they already know. I don’t like to say the obvious: “You need to lose weight.” Obese people are rarely under the impression that it is perfectly fine that they are overweight. They rarely are surprised to hear a person saying that their weight is at the root of many of their problems. Obese people are the new pariahs in our culture; it used to be smokers, but now it is the overweight.
The National Journal has released a Special Report. The Report features a series of four articles: Restoration Calls – Fixing America’s Crumbling Foundation. Among these articles is: “Why Do We Trust Doctors?” It contains results of a Gallup poll, showing trust in doctors is at all-time high of 70% over the last ten years.
This is intriguing considering numerous media articles on physician personal profiteering and physician partnerships in technologies such as imaging equipment for financial gain.
The article begins, ”We’re cynics about insurance companies and critics of big health companies. So why do we still believe in physicians?”
Why indeed? The author of the April 26 piece, Margot Sanger-Katz, tells the story of 60 year old Mary Morse-Dwelley of Maine who has undergone 22 operations to close an abdominal incision and who has had her gallbladder, uterus, and 2 feet of intestine removed. She has spent two years in bed. Despite this long surgical ordeal, she implicitly trusts her surgeon. So does the American public, if you believe Gallup.
When patients are asked why they trust doctors, patients say they see doctors as someone who is trying their best to help them. They do not see them as agents of government, insurance companies, or institutions. They trust the interpersonal face-to-face relationship and the motives of their doctors.
George Washington never met an Oncologist. I know this because of the Cherry Tree story. If our first President had spoken to a cancer doc, then that honesty fable would have been different. Anyone can tell the truth about cutting down a tree. It takes real guts to say to an oncologist, “I cannot tell a lie, I have a problem.”
Doctors frighten all of us. No matter how warm and congenial they are, there is always the threat of what they may say. A few words from a physician can change your entire life. An oncologist may be the scariest of all. For this reason it can be very hard for any of us to tell our doctor the complete absolute truth.
It is easier to diminish or deny pain, then describe in detail and submit to tests. Emphasizing the balance in a diet has less risk than noting it is only 600 calories. Increasing fatigue can be blamed on stress, not progressive weakness. Everyone seems to have quit smoking, despite yellow stained nails. “Social” drinking sounds better than a daily six-pack. We carefully parcel out the information we tell our doctor. It is gut level denial and it does us no good.
Physicians understand the desire of patients to limit and control the conversation. They learn to recognize incomplete and evasive answers. They try to ask questions which produce accurate information. A compassionate doctor knows that his response to a patient’s words is as important as the question asked.
Even though it can be hard, it is in our best interests to supply good information to our caregivers. Doctors cannot make correct diagnoses or order proper treatment using erroneous data. Unneeded X-rays are frequently ordered to fill gaps in information, which the patient could have supplied. Understanding it can be tough to disclose personal medical facts, here are several ideas that might make communication easier and more complete:
An ancient maxim of dinner party etiquette, which I believe has been proffered from more than one source, is “never discuss politics, religion or sex in polite company”. In some ways, for me as a physician, entering the exam room with a patient seems to require some similar degree of discretion. But the consequences of straying outside the bounds of polite discussion in the doctor’s exam room are quite different from any awkwardness that might ensue after a social misadventure.
Dr. Henry Lee, the well-known Connecticut State forensic medicine expert likes to relate a tale of his own introduction to dinner party etiquette, which I will try to relay somewhat faithfully. His English was poor when he arrived in the U.S. and, invited to a party in which guests were seated in the traditional “boy-girl-boy-girl” arrangement, he knew he would be pressed to make conversation with the women on each side of him. A friend reassured him, “You’ll have no problem if you can just get the woman talking about herself and then all you have to do is listen politely. Simply ask ‘Are you married?’ and then ask “Do you have any children?’. This should get things going just fine.” Armed with this strategem, Dr. Lee was seated and turned to an attractive young woman on his left and asked if she was married. She replied “No”. So of course, he went on to the next question, “Do you have any children?”. He was surprised when she reacted with a look of indignation and quickly turned her attention to the guest on her other side. Puzzled at her reaction, he surmised that he must have gotten the sequence out of order. Trying out the other way around, he turned to an older woman on his right and asked confidently if she had any children. “Three!”, she replied happily. Delighted with his progress, he then inquired if she was married. Dr. Lee says he spent the dinner conversing with his soup and salad.
I have also had exam room encounters come to grief because of sex, politics and religion, but nothing has caused me more regret than politics. I will explain.
I first realized something was amiss when I picked up my prescriptions and the pharmacist explained that she could not fill the anti-malarial medications as prescribed: “Your medication plan only pays for 30 days of pills, and your prescription was for five pills.” The pharmacist continued: “Your PBM [that’s an acronym for pharmacy benefits management company, the type of company that coordinates many peoples’ medication coverage] only fills this medication for 30 days at a time. And 5 pills would last 35 days.”
Expert logician that I am, I countered with some math of my own: “Well four pills, taken weekly, only lasts 28 days. If they really want to give me 30 days of coverage, they need to give me a fifth pill.” I thought it was insane to pay a whole extra co-pay to get my fifth and last pill, a co-pay I’d have to pay for my two sons too since all three of us were traveling together.
But the pharmacist was unpersuaded: “Sorry, four pills is it. You’ll need another prescription for the last pill.”
Irked, I handed over my credit card and hastily signed the bill, too bothered by the conversation to look closely at the bottom line.
When I got home and told my wife Paula about the saga of the fifth pill, she calmly looked at the bill and asked me: “If you were so concerned about a $10 co-pay, why didn’t you notice that the antibiotic you were given cost almost $200?”
I was reminded again recently of how important it is to sometimes just sit back and listen to what our patients have to say. Every month, as part of our hospital-wide patient safety efforts, I meet with staff and interview patients, seeking to learn how we can improve the care we provide to them.
A young patient shared two stories with me, one telling me how we get it right and one reminding me how we sometimes get it wrong, even without realizing it. She was nervously awaiting a procedure in Interventional Radiology when a nurse sensed her anxiety and called in a child life specialist. The specialists came and significantly helped relieve the patient’s suffering. She listened to the patient, offered a comforting touch, and provided her age-appropriate reading material and Sudoku puzzles, a brilliant though infrequently used intervention. If anything could take your mind off of your illness, it is Sudoku.
What was amazing was that after all the patient had been through―weeks in the hospital, countless procedures, scores of clinicians―what she remembered was the nurse’s act of kindness by caring enough to call the specialist. The patient reminded me that though we can cure disease sometimes, we can relieve suffering always, often with nothing more than a kind word, a gentle touch or a warm smile.
As I listened, the patient, along with her mother, went on to tell me more. They told me how the patient has complex allergies and that her mom knew her disease better than any clinician. They had lived with the disease for a decade. Yet at times, neither the patient’s mother nor the patient felt they were being heard by the doctors. The mom expressed frustration that clinicians often dismissed her concerns and discredited her knowledge.
A report from The Blog That Ate Manhattan:
The Problem : Lost Face Time = Lost Joy
One day, about 5 years into using the electronic medical record in my practice, I came to the realization that I wasn’t having fun anymore. I was sitting throughout most of every office encounter facing a computer screen, my back to the patient on the exam table across the room. The joy of face to face interaction with people, the real reason I went into medicine in the first place, had been replaced with the more pressing urgency of data entry.
My revisit routine went something like this – I’d enter the room, briefly greet the patient (undressed and sitting on the exam table) and then, apologetically saying “Let me just open your chart”, I’d log on and begin interacting with the more immediately demanding presence in the room – the EMR. I’d turn around as often as I could to look at my patient, but mostly I listened but kept my back to her and I typed. After which I’d rush over to her side, do the exam, then head back over to the computer to make sure I got all her orders, refills and charges in as required. A brief goodbye, and I was on to my next patient.
As more and more mandatory clicks were demanded from the EMR to prove I was a good doctor – smoking history reviewed (click), medication reconciliation (click, click, click,click), problem list review (erase duplicates from ENT , remove resolved problems, add today’s, then click that I had reviewed what I just did) – the actual moments of face time with my patients had became smaller and smaller, till they were almost an annoying distraction from the real task at hand – finishing my charts.