When I last saw RP, he was an 87-year-old man. 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 adjustment disorder, really a broken heart. His wife, also a long-term patient of mine, had succumbed to pancreatic cancer that had capped years of debilitating illnesses. He had never really recovered.
As his health was good at this final visit, 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. It was the last I time would see him.
Five years later, when a similar car rumbled by me at a corner, I thought of RP.
I have many patient panels. These days, most exist in our electronic health record (EHR). There is the automatically generated “My Patients” list that contains all patients in my practice. There are also a couple of lists I created. There is “INR,” a list containing my patients who take the blood thinner warfarin and need to have their anticoagulation test, the international normalized ratio, checked every few months. There is also “Enigmas,” a list of patients I have seen with another doctor whose presentation had confused us and whose evaluation 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. The patients on this list can only be fully enumerated 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 it’s members can never really be known.
Some patients join the ghost panel intentionally, some willingly, some unwillingly, and some unwittingly. This panel speaks to the mobility of society, the care of older relatives, and how little feedback we 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 watching my daughter’s track meet; during a swim; even while 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 probably have 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 an excellent relationship and usually agreed how to care for his medical problems. 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 to be closer to children.
Health insurance instability causes many patients to ghost me. Some insurance-based separations are known to me; 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 years of age, claiming actual bodies (sort of like Voldemort), upon enrollment in Medicare.
There are also patients who fire me. Said more gently, they leave my practice after becoming 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 that a patient is dissatisfied. I may be unaware of bad outcomes, and, like most doctors, without this knowledge I assume good outcomes rather than bad. 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, making 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, both as a person and a surgeon, exceptional. 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 seemingly 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 more fully knew the whos and whys of the ghost-patient panel.
[1] Yes, I know, in retrospect not a great choice.
A previous version of this essay was published here.
Thank you Dr. Cifu. This paper rings 2 bells for me.
1 - I left my doctor I had seen for 20 years because of several different reasons, but the biggest reason is no one took the time to get to know my personality and work with it. One day one of his staff said something so insulting and insensitive I never went back. She had known me for 20 years also. I just assumed, despite my longevity with him, my absence wouldn't be given a second thought. Maybe it is and maybe it isn't.
2- In hospice the PCP usually gives the hospice medical director full care of the patient because hospice is such a specialty. Because of that I didn't think the PCP, despite giving up total care of the patient, would care if I called him/her about the death of his/her patient. I assumed that each PCP has so many patients that come and go through his/her revolving door one patient wouldn't be missed. I hear you, doctor, say that there is a very good chance the patient's PCP does think about him/her despite leaving their care.
Because of this sharing I will be more sensitive and keep that PCP in the loop of his/her patient's death. Maybe that one patient was the one that caused that doctor's sleepless nights.
Thank you.
Wonderful post. In 2008, after 25 years, I retired from my ID/HIV Office Practice in 2008 to devote the last 10 years of my career to full-time inpatient Critical Care and ID. I handed off most of my patients to the younger ID doc hired to take my place. My patients were sad.
In the proceeding 25 years I rarely was "fired" and when few of the patients let me know what they thought of me and my style.
During those years I kept a manila-folder labeled "Me File". It it I tossed every good or bad in-writing comment - greeting cards, Member Services complaints, lawsuit notices, patient telephone messages slips. Some of it was inpatient as well. When EPIC came around and the messages came across electronically I printed and saved them.
When I finally fully left clinical practice I brought all that material home - by then it was overflowing 10 inches thick and few years after that I sifted through it. Going through the all that material was a very profound experience. I'd see a name and my heart would begin to pound. I remembered most of those patients, especially the withering 4 page letter that criticized everything about me except my footwear. After 35 years that was one of about 10 negative encounters.
Although the positive "thank yous" were satisfying, it was the far-outnumbered which bothered me the most. In 35 years I never got used to the hard fact that not everyone is going to like me.
I think I thought of Medicine as somewhat of a Holy calling. I was honored and humbled that someone would put their faith and trust of their, or their family member's, corporal beings in me.
It was exhilarating, and frightening, and what I miss most about practicing medicine.