Every patient wants to feel that they, not just their symptoms, matter

Last week I shared a story about our family doctor, adored by many, who lost his life to COVID. Several readers wrote saying how wonderful it would be if all doctors were like him, so I thought I’d share one more story about a visit to another doctor. In this situation, things got off to a good start, but at some point went awry. What could have been a positive experience turned out to be quite different. It involves my aunt Doris, whom I wrote about a few weeks ago. What makes this story extraordinary to me is just how ordinary it is.

Some years ago, when Doris was 101 and in terrific physical and mental shape, she began to experience periodic achiness. Although she was fully mobile and active, she couldn’t shake the tenderness in her legs and shoulders that came upon her from time and time and could last for hours. Her primary care physician suggested I take her to an orthopedic specialist whom he recommended highly.

The orthopedic practice was about ten blocks from Doris’ New York City apartment, where she had lived quite capably on her own for seventy years. She was feeling good on the day of the appointment so, at her insistence, we walked to the doctor’s office, enjoying the crisp autumn air.

After signing in with the receptionist, Doris and I sat in in the bulky leather sofa in the waiting room, sinking into cushions that were a lot softer than their appearance suggested. When Doris was called into the exam room, I actually had to hoist her out of the sofa. I was surprised that a medical office, particularly an orthopedic practice catering to patients with restricted mobility, would have waiting room furniture that was challenging to physically negotiate.

We were greeted pleasantly by the physician, whom I’ll call Dr. Hurley, a woman who appeared to be in her mid-40s. Dr. Hurley smiled warmly and extended her hand to Doris, saying how nice it was to meet her. So far, so good!

During the exam, Dr. Hurley showed considerable patience with Doris, especially since Doris was slow in getting on and off the exam table. Dr. Hurley was reassuring, telling Doris to take her time, continuously checking if she was comfortable. I could not have been more pleased that Doris was in the care of someone so kind and courteous, someone with a caring touch and gentle tone of voice. The rapport between Doris and Dr. Hurley was comfortable. Questions and answers flowed freely and easily. I mentioned the problem with the waiting room sofa. Dr. Hurley said she hadn’t gotten any complaints, and that she herself hadn’t sat on it in years, but would certainly look into it. She seemed genuinely concerned and thanked me for calling it to her attention.

After the physical exam, Dr. Hurley asked us to join her in her office to get additional information about Doris’ health, share her findings, and discuss next steps. Dr. Hurley waited for us to be seated, and then proceeded to sit at her L-shaped desk, which had a keyboard and computer screen on the far side. As Dr. Hurley sat in her chair, she positioned herself in front of the computer screen and away from us, so we were now facing her profile.

The discussion got under way and Dr. Hurley began taking notes, tapping on the keyboard. And the tapping didn’t stop. As the discussion progressed, Doris’ responses to questions became increasingly terse. There was some uncharacteristic hesitancy in her speech, as though she was struggling to find the right word.  A couple of times she even had to ask Dr. Hurley to repeat the question. I thought Doris might just be fatigued from the walk over to the office, though I wondered if the doctor might have interpreted this to be signaling some cognitive decline.  

When Dr. Hurley offered her diagnosis of fibromyalgia, she never once looked away from the keyboard, continuing to enter information. Doris seemed apprehensive about asking the very questions she would normally have asked in circumstances like this, for example, the basis for the diagnosis, treatment options, and side effects. I jumped in and asked these questions, knowing full well this might annoy Doris since she was adamant about presenting herself as independent and capable.

The discussion moved toward a conclusion. Still fixed on her computer keyboard and screen, Dr. Hurley asked Doris if had any other questions. Tight-lipped, she responded “No,” failing to mention a rash she had for a couple of weeks, but which had begun to fade a few days prior to the visit.

“You forgot to tell her about your rash,” I reminded her.

“No need,” Doris replied firmly. “It’s gone now,” she stated, glaring at me with a look that could be mistaken for nothing other than an admonition that I say nothing more. 

As soon as we were out the door, Doris, clearly ready to burst, proclaimed that she would never return to this physician. I asked Doris what had upset her. She turned to me and said, “She was more interested in her computer than she was in me.”

“But she heard everything you said,” I responded, and playing devil’s advocate, I added “and besides, she needs to make sure she’s entering all the necessary information into your file.”

Doris’ response: “That’s her problem. Not mine.”

On the surface, the issue could appear easy to define. But I wondered if there was more to it.  Was there some violation of Doris’ beliefs about etiquette? Was the continuous tapping on the keyboard a distraction? Was the failure to initiate eye contact, yet alone maintain it, signaling to Doris that the doctor wasn’t genuinely concerned about her? Was the keyboard activity stimulating too rapid an information exchange for Doris? Did the computer trigger or reinforce a feeling in Doris that she is from another era?

Doris’ visit to the orthopedic specialist was one of about a billion visits made by Americans to doctors every year.  Each visit is an opportunity for building trust and for having a constructive exchange of information. Or it can be a less than satisfying experience, possibly even resulting in a health outcome short of success.  

Communication between physicians and patients does not occur effectively as often as we would hope. This unfortunate truth is revealed in any number of ways. For example, noncompliance with medical directives occurs about 40% of the time, and about 50% of all patients do not take their prescribed medications correctly, or even at all. While there are many reasons for this, studies show that many patients do not always understand the instructions. This happens more frequently with the elderly, with patients and physicians from different cultural backgrounds, and in lower-income areas. In a recent survey that measured confidence in the health care systems of eleven relatively wealthy nations, the United States came in tenth in patients’ belief that they would get the most effective treatment and last in the belief they could afford the care they needed.

Doris’ time with Dr. Hurley began on a good note, but at some point, something changed. Surely, it was unintentional, but Dr. Hurley’s notetaking was off-putting to Doris. She later told me she thought it was rude. This perception ultimately steered Doris in the direction of those who do not follow the physician’s advice and whose faith in the system was less than it was when she entered the physician’s office.

Dr. Hurley was far from heartless. And yet, what was important to Doris and what was necessary for the visit to proceed effectively from Dr. Hurley’s perspective diverged at a critical moment in their time together. And neither possessed the wherewithal to reclaim the common ground of good feelings established from the moment they greeted one another and which lasted throughout the physical exam. I was sitting in the office with them, yet I was unaware that Doris was distressed by the tap, tap, tapping on the keyboard until near the end. I suppose I have grown so accustomed to the use of technology to record a patient’s history that it didn’t register.

It may be tempting to chastise the parties involved in the situation. We might think that all would be fine if only Doris had recognized that this is how physicians do things these days and that Dr. Hurley’s behavior should not be “taken personally.” Similarly, all would be fine if only Dr. Hurley understood that she was doing something that had an alienating impact. Or, as Doris’ advocate, if only I had been more aware of the effect of Dr. Hurley’s behavior on Doris, I could have said something to redirect Dr. Hurley’s focus.

Dr. Hurley and Doris are both vulnerable to human frailties such as misassigning motives to another’s behavior. In this case, Doris read into Dr. Hurley’s behavior that she didn’t care about her as a person. Add stress into the mix, as can surely be the case when one’s health is at stake, and such failings can intensify. And Doris’ pride and desire to appear as a model patient would prevent her from complaining about how things were going with Dr. Hurley.

Doris will bring her experience with Dr. Hurley to the next physician she sees. As a result, that physician will have a greater challenge since Doris starts out with less trust, with less of an inclination to give the benefit of the doubt. This next physician will have to be unfailingly thoughtful to win back a patient whose confidence in physicians was tainted by the last encounter.

The odds are that every physician has had a “Doris” in their office at some point, and it would behoove them to be aware that their notetaking could be perceived as disinterest or rudeness. An explanation along with a pre-emptive apology prior to turning to face a computer screen can go a long way toward building and maintaining trust.

Every patient wants to feel that they, not just their symptoms, matter.