Friday Reflection 23: The Ghost Patient Panel

A revisit to a past reflection

I almost never revisit/repost/republish essays here. It seems like a cop-out. Even after four-plus years, there is still so much to write about medicine. This piece, however, kind of haunts me. Anyone who uses an electronic medical record has searched for a patient, filtered for “my patients,” and been presented with the names of people who were once “your patients” but now are not. Whenever this happens, I think of this reflection, first published here in June of 2023. I hope you’ll tolerate me revisiting an updated version.

When I last saw RP, he was 87. He suffered from an impressive list of medical problems: diabetes, obstructive sleep apnea, hypertension, atrial fibrillation, and restless leg syndrome. His most troublesome problem, however, was a broken heart. His wife, also a long-term patient of mine, had died of pancreatic cancer after years of debilitating illnesses. He had never really recovered.

RP’s health was good at this final visit, so we spent a few minutes talking about my new car, a diesel VW Jetta.¹ He had spent years as a diesel engineer and was excited to hear what I thought.

Five years later, when a similar car rumbled by me, I thought of RP.

I have many patient panels. These days, most exist in the electronic health record (EHR). An automatically generated “My Patients” list contains all patients in my practice. I’ve also created a couple of my own lists. One is “INR,” a list of my patients who take the blood thinner warfarin and need their international normalized ratio checked every few months. There is also “Enigmas,” a list of patients I have seen with another doctor whose presentations confused us and whose evaluations I want to follow.

Then there is a panel that exists not in the EHR but only in my mind. This is the list of patients I am currently worried about. I can only fully enumerate the patients on this list at about 4:00 AM.

And then there is the ghost patient panel.

This panel is made up of people who used to be my patients but no longer are — people who left my practice without telling me. They might have fired me, lost or changed their health insurance, moved, or died without my knowledge. If I knew who was on this panel, I could learn details about their lives, my practice, my skills as a doctor, and even how we care for our loved ones. This list is ghost-like because its members can never really be known.

Some patients join the ghost panel intentionally, some willingly, some unwillingly, and some unwittingly. This panel speaks to our society's mobility, the care of older relatives, and how little feedback doctors get on the care we deliver.

A patient joins the ghost-patient panel when I realize I no longer see them. This can happen while I'm watching my daughter’s track meet, swimming, or even documenting another patient’s visit. After remembering the patient and adding him or her to the panel, I next consider why they might have left. Death, of course, is the most dreaded cause of ghosting (and a cause that makes the title of this reflection a bit unseemly). The oldest people have probably died. Recalling them makes me feel sorrow and guilt — sorrow for the loss; guilt because I often realize their absence months or even years after their passing. I also think that these were strange relationships, usually ones in which I was close to the patient but not to their family, who would have alerted me to their passing.

I expect that RP falls into this group. We had a very nice relationship and usually agreed on how to manage his medical issues. I enjoyed his company, and he seemed to enjoy mine. We had shared the difficult experience of his wife’s decline. He was on Medicare, so insurance changes would not have affected him. I imagine that he either died or moved closer to his children. 

Health insurance instability causes patients to ghost me. I am aware of some insurance-based separations; patients alert me as they try to navigate the healthcare system. Most patients, however, accept that nothing can be done to retain their doctor and just silently move on. Some of these patients un-ghost at age 65, claiming actual bodies (sort of like Voldemort) when they enroll in Medicare.

Some patients in the panel fired me. Said more gently, they leave my practice because they are unsatisfied with my care. It is no surprise these patients disappear. No doctor is right for every patient, and even when I provide the care a patient needs, I often don’t provide the care that he wants. Most people see no reason to tell a doctor why they are leaving. That said, it is disconcerting that I am so often unaware of a patient’s dissatisfaction. I overestimate patients' satisfaction because the feedback I get comes overwhelmingly from patients who have chosen to remain in my practice. The power differential between doctors and patients also keeps (most) patients from telling me what they really think. We physicians are also well compensated, which can make us feel valued — sometimes beyond our true worth.

A personal experience reminded me how difficult it can be for a doctor to get feedback. I recently saw a physician for a minor surgical procedure. The doctor was exceptional, both as a person and as a surgeon. Our preoperative visits were excellent, my surgical experience was perfect, and my convalescence was uneventful. While the doctor examined me during my postoperative visit, he noticed trauma at the surgical site. “You must have injured this,” was how he reported the finding to me. As a writer, I guess I should have respected his use of the active rather than the passive voice. However, “there seems to have been some trauma here” would have sat better with me. I am sure this difference meant nothing to him, and he could not have known how I — an obsessively adherent perfectionist — was offended. I certainly said nothing.

Of all my panels, the ghost-patient panel is the one that causes me the most wonder. Its very nature leads to startling recollections of patients who have vanished. I analyze past visits and relationships when I realize a patient is on the list. I am sure I could learn a lot about both what I do well and why I fail if I better understood the whos and whys of the ghost-patient panel.

A previous version of this essay was published here.

1. Yes, I know, in retrospect, not a great choice.