Friday Reflection 22: The Memory Binder
PH is a 55-year-old woman who comes to see me for an initial visit. She says she has lost about 50 pounds over the last year. Over the last few weeks, the most she can eat at one sitting is a spoonful or two of food.
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René Leriche famously wrote, "Every surgeon carries within himself a small cemetery, where from time to time he goes to pray -- a place of bitterness and regret, where he must look for an explanation for his failures.”[i] Obstetricians are known to have journals in which are the names of every infant whose birth they attended. Instead of a cemetery or a journal of births, I have a 1½ inch binder. Within the binder is a single page for every one of my patients who has died. The collection is not a place of bitterness and regret, nor is each entry associated with the joy of a new life. Instead, it is a place I visit to pay my respects, to learn, to reminisce, and to trace the arc of my career.
I started the collection that fills my binder in 1997 when the first patient I cared for as an attending primary care doctor died. After I hung up the phone with the patient’s brother, I looked at the “face-sheet” and wondered what to do with it. The single, hand-written page included the patient’s name, date of birth, medical record number, problem list, and other notes about her case. I could not bear to discard it, so I placed it in a drawer. Over the years, I laid additional sheets on top of it. At some point, when I emptied my office for a move, I was surprised by the height of the stack of pages. I placed them, maintaining their chronologic order, into a ½ inch binder.
PH is the patient that first face sheet belonged to. Patients with unintentional weight loss almost always overestimate their weight loss. A look back in the medical record usually verifies a few pounds of weight loss rather than the dozens that the patient believes to have lost. I did not have previous weights on PH as this was my first visit with her, but I could tell that her estimate was not far off. She had the classic look of cachexia, a drawn face with wasting over her temples. When I examined her, I saw folds of skin hanging loosely from her frame, evidence of the subcutaneous fat she had shed. I also discovered a rock hard lymph node, the size of a tennis ball, in her supraclavicular fossa – the area between one’s neck and shoulder – a so-called Virchow Node, classically associated with metastatic gastric cancer. I called our cyto-pathologist to come to my office to perform a needle biopsy of this mass. He was unable to penetrate it.
Fresh out of training, at a time when “unnecessary hospitalizations” were anathematic, I managed PH as an outpatient. Twenty-five years later, I would have managed the case very differently.
Over the years, the face-sheets have gone from handwritten ones to printouts from an electronic medical record system. I have added the cause of death, circling the entry on the problem list that had progressed to a fatal illness or adding a new diagnosis when the end was sudden and unexpected. Sometimes I jot down a reflection. Every 10 or so years I buy a thicker binder – first 1 inch, most recently 1½ inches.
When I realized that I was going to maintain this binder, I added a sheet to the very back. This page was for the first patient I had lost. He died while I cared for him in my clinic while I was still a resident. He was a young man I still remember for his quiet, gentlemanly manner, and charming Texas drawl. He died of AIDS related complications, all-too-common in the pre-HAART (highly active anti-retroviral therapy) era. Had he lived another couple of years we could have offered effective therapy for his HIV.
I do not see my collection as morbid, but I do worry a bit that my colleagues do. Activities like this one are routine for me. I am a collector and a sentimentalist. I can spend hours looking through boxes of pictures and family memorabilia. The binder entries memorialize people with whom, however briefly, I was closely associated. I spent time with them and with their families. I often woke up in the middle of the night worrying about them. Unlike my own deceased relatives, however, these are people I have no other way of remembering. I cannot share stories about them over a family dinner.
Thumbing through the pages I see how medicine, and my own clinical practice, has changed. In the early years there are deaths from AIDS, heart disease, and emphysema. Paging from the earliest entries to the middle years, cancer deaths become most common, reflecting our improved care of HIV and cardiovascular disease, the declining rates of smoking, and the “aging” of my patient panel. When I look over the most recent years, at least half the patients died after falls or causes that I can only identify as “old age” – when everything went wrong. Amazingly, among dozens of my patients lost since March 2020, only one died of COVID-19 – attesting to the disparate way this disease affected our country.
The ephemera that I sometimes attach to the face-sheets have also changed over the years. The early pages have nothing attached. These were patients I knew only briefly. As those who died had been with me for longer periods, their entries are often adorned with death notices, prayer cards, and funeral invitations.[ii] As the people who joined my practice changed, additions of long obituaries from local and national papers appear. Most treasured are the thank you notes, usually from a grieving family member. Two of these thank you notes were written by the patients themselves, penned during their final days. I was left speechless when I received these.
While the first two entries in the binder are permanent, the final one is always temporary: its place soon taken by a more recently deceased patient. Currently, this position is occupied by a patient who died far too young; a peer who shared with me a similar education and upbringing. Though our relationship lasted only a few years, we grew close. There was an entire team of physicians involved in his care, but it was always me he consulted before making treatment decisions. It was also me that the patient came to when it was time to initiate hospice.
There is pain in this binder. Every name is familiar but many whom I recall nothing else about. That evidence of our impermanence is bracing. My forgetting people also makes me regret that I did not get to know each person, rather than each patient, better. There are names that bring back anxiety, family meetings that could have gone better, tears and anger in exam rooms, and guilt about times I believe I may have fallen short.
What will I do with this binder when I stop practicing medicine? I expect it will be one of the few physical objects I take with me. I will leave with the memories and lessons of the patients who died “on my watch.” My living patients will go on to form new relationships with others who will be responsible for caring for them while they live and remembering them when they are gone.
A previous version of this reflection appeared here.
[i] Leriche R. Bibliothèque de Philosophie Scientifique. Flammarion, 1951
[ii] The appearance of the binder sometime makes me think of The English Patient’s copy of The Histories by Herodotus.