I wrote an article recently on cardiovascular syndromes after mild Covid-19; one more aspect of Long Covid or Long Haulers. I began with a story of a friend who had been mis or undiagnosed and probably initially disbelieved. Did the physicians, including her primary care physician, spend enough time to truly understand her symptoms? Did they make the connection between a recent episode of mild Covid-19 and the ensuing syndrome? Where they aware of the Long Covid syndromes? Did they take the time to do some research to better understand?
In a comment related to the patient’s story, it was suggested that the American medical delivery system is truly dysfunctional. I agree. This has prompted me to write this series of articles to define, address and offer opportunities for improvement – improvements that will make medical care better, will reduce patient frustration and anxiety, and greatly improve physician well-being, the latter now being at rock bottom.
To begin, consider this true story. The patient’s name and some characteristics have been altered to protect anonymity. It is adapted from my book Fixing The Primary Care Crisis which was a sequel to The Future of Healthcare Delivery.
Susan is 56, married, insured, a successful professional and is in generally good health. She began to have a strange sensation in her right chest, which she described as a shooting sensation almost electrical or vibrational in nature which stretches from high up in her right chest down as a narrow line over her rib cage and onto her abdomen. It seems to be immediately under the skin, starts intermittently and ends at no set time. She visited her primary care physician (PCP) and gave this description, adding that she was concerned that it might be her heart. The doctor asked additional questions and did an exam and electrocardiogram. All were normal except for the description of the sensation Susan was feeling.
Her PCP was now running out of time for this fifteen-minute visit. Here was a fork in the road with two paths. One path was to say that it was a real sensation but nevertheless he could reassure her that there was no evidence of disease. But given that Susan indicated a concern about her heart, the PCP chose the path to send her to a cardiologist for further evaluation. The cardiologist did a history and exam related to her heart and found nothing abnormal but suggested a stress test and an echocardiogram. Both were normal. The cardiologist said it was not Susan’s heart causing the problem, but since the sensation crossed over to the upper abdomen, maybe it would be a good idea to see a gastroenterologist.
The GI doctor also did a history and exam and found nothing. Nevertheless, among many other tests, he ordered a CT scan of the abdomen. All was normal except for a small cyst in her uterus. The radiologist read it as a benign cyst but – feeling the need to be cautious – recommended Susan visit a gynecologist, “just to be sure.”
The gynecologist also said it looked benign, but “ just to be on the safe side,” she could remove it laproscopically. Susan would be “out of the hospital the same day and feeling fine in a day or so.” The cyst was just that, a benign cyst.
Susan still had the strange sensation in her chest and no one had found an answer for her. But given that it seemed to have an electrical feeling, the gynecologist suggested that it could be a nerve issue. So, she visited a neurologist who found nothing, commenting that nerves run around the chest, not up and down. She still had the strange sensation,
Susan’s story illustrates the problem so common today in primary care. The primary care physician should be the backbone of the American healthcare system. But primary care is in crisis – a very serious crisis. In this story, the PCP did not truly listen to his patient. He did not stop and think the issue out carefully. The fundamental problem was not his disinterest. It was that he had no time to delve into what might actually cause Susan’s pain since there was a waiting room full of patients and he needed to see about 25 that day. So instead, he took the easier path and referred the patient to a cardiologist since this seemed like a logical choice.
Had he followed the other side of the fork in the road, listened long enough and then thought about it, he would have concluded that Susan was hypersensitive to minor – albeit real – sensations. He would have offered reassurance that it did not represent a life-threatening ailment. He would have said that it was real but of no concern. He might have offered a few weeks of a low-dose anti-anxiety medication such as alprazolam (Xanax), offered further reassurance and told her to return in two weeks for a follow-up. At the follow-up, he might have explored the issues producing anxiety or stress in her life – finances, marital relationship, a disruptive child, or an overbearing in-law.
After hearing about this patient’s saga, I asked a highly-regarded PCP to comment on how he would have cared for this patient. I told him only about the initial visit. He smiled and said, “I bet she got sent for a big workup.” He first said that if she were his patient then he would know her well, her family situation, and would be aware of her health status including blood pressure over the years, cholesterol levels and other factors that might predispose to heart disease. From there he offered his approach to her visit, which I have reiterated above.
Unknown to the original PCP, Susan had some very stressful events occurring in her family, a situation that was having a major impact on her and her husband’s lives. What Susan really needed was assistance to overcome her stress, not months of specialist hopping, which was unnecessary, very expensive and only increased her stress.
Anxiety and stress are often components associated with a physical symptom, and these can only be addressed with more time to carefully listen and respond with suggestions. But Susan was shipped from doctor to doctor, test to test, and even had an operation with no one really listening enough to figure out her problem. All each specialist could do was say it was not in his or her “organ system” and leave her without a sense of closure. Each said it was not the heart, the stomach or the nerves. And the surgery “went fine,” but she still had the unpleasant sensation. All of this resulted in far less than adequate medical care and cost a king’s ransom. That is what happens today. All that was needed was for the PCP to spend some more time – time to listen, then to think and then to counsel. That’s not expensive at all.
These events point to at least three significant issues that help to define why American medical car is dysfunctional. The first was the PCP not spending the time to truly understand Susan’s issues. If he had done so, there would have been no needed to refer her to the cardiologist. That referral was essentially a copout. But perhaps, we should blame the PCP but at the same time understand his circumstances. He was stressed for time as a result of the perversity of the insurance system. No excuse but perhaps understandable. Unfortunately, this lapse resulted in the patient undergoing months of useless strain and lots of anxiety.
The specialists continued the referral process, one to the other, again without much attention to what the underlying causes of her problem might be. It was simply easier to send her to another specialist than to spend any time thinking more broadly, silo based rather than holistically based care.
Finally, the specialists were totally disconnected. If indeed specialty care was indicated, it should be the PCP that is in the driver’s seat, coordinating the referrals, personally contacting the specialist and explaining why the referral was pertinent and requesting an early appointment. As best Susan knew, none of the specialists even consulted with the PCP as to next steps before referring her on to the next specialist. None called ahead and all left it to her to arrange for an appointment, meaning that it often took weeks or more to see the next specialist on this ever-lengthening list. Another copout for sure but in some ways explainable since it is easier to refer than it is to connect back in a useful manner – telephone discussion with joint planning on next steps.
Susan’s story and her travails with the medical system illustrate how deep the problem goes. Her journey highlights many of the issues I will address in the coming articles. Multiple other patient vignettes will underscore the reality of the crisis – and its impact on all of us. In the process, I will explain how you, as a patient, can receive excellent care at limited expense.