My grandmother died in the hospital, alone, the day after she was “found down” at home by emergency medical services.
I lived near my Nani, as I called her but, even though I am a physician, was not allowed to see her after she had been admitted to her local hospital because of the strict, Covid-related no-visitor policy. I spent most of the evening sitting in my car in the hospital parking lot, paralyzed.
The next morning I got a phone call from a nurse. She was vague: My grandmother had been doing relatively well, but then things took a turn, and her code status was “do not resuscitate.”
So they hadn’t.
Two years later, I summoned the strength to review her medical records, including the deceased note. For the longest time, I thought that learning what exactly had transpired in my grandmother’s final moments — evidence of an alarmingly slow heart rate, respiratory distress, or the like — would make no difference to me now.
During my residency training, I had pronounced a few dozen patients deceased, so I knew what the deceased note in a medical chart usually entails: a few details about what brought a patient into the hospital and major updates during their stay. Then a sentence about what happened, physiologically, that led to their death. I typically left a comment about which family members were present or had been notified. I documented that a physical exam was performed to confirm the absence of heart and lung sounds. Last came the time of death, written firmly in a separate paragraph — a final step of closure.
As weeks turned to months after my grandmother’s death, I struggled to find closure with it. Thousands of people like me had been separated from loved ones who were admitted to the hospital during the peaks of the pandemic. Some of those people never came out again. Not knowing exactly what happened creates a grief that has been likened to ambiguous loss, such as when a loved one goes missing during a war.
When at last I went to find my grandmother’s medical records, it was the deceased note I wanted to read more than anything else. Not so much because I wanted to know why she died. Rather, what gnawed at me while I tried to sleep, was what I hoped to read between the lines of the note: Was it written by someone who had gotten to know my grandmother? Was she alone in her final moments? Conscious? Afraid?
I also wanted to read the physical exam to know what her care team had seen when they looked at her — beyond the functioning of her organs. Would they mention her nails still covered in the pale pink polish I had painted on for her two weeks earlier? Did they notice the smallpox vaccine scar on her arm from her childhood in India? Had someone — anyone — spent enough time to see more than just another a body filling the overflowing Covid-19 ward?
I knew from my own experience in residency and from working on the frontlines of the pandemic in my own hospital that such observations were unlikely. In March 2020, there was little time for “unnecessary” documentation when health care workers were pushed beyond the brink of burnout.
I was correct: my grandmother’s medical notes and deceased note left me as hollow and in the dark as when I started. The physical exam was spartan and unrevealing, based on a template I sensed had barely been edited to reflect the person in the bed. In the dozens of pages of records through which I sifted, no one spared a word about her personhood, or offered a glimpse into her state of mind in the hours before she passed.
But even before the pandemic, charting information in the medical record that wasn’t quite, well, medical was never really sanctioned. Medical students are taught early in their training to document in the medical chart only clinically relevant information. They are taught the primary goal is to communicate important information between members of the health care team which, by the way, can conveniently minimize any possible legal issues.
I still recall one of my residency colleagues being admonished by an attending physician for documenting an argument a patient had with a cafeteria worker over the quality of hospital breakfast sausages. “How does this help us treat their COPD exacerbation?” the physician barked.
Although the Association of American Medical Colleges describes writing medical notes as a core expectation for incoming medical residents, formal guidance on note writing varies. Some commonly adopted standards suggest a specific format, such as the order of presenting lab data and synthesizing ideas, and most physicians would readily agree that the medical chart is not a place for stigmatizing or passive-aggressive commentary.
Over the last 10 years, medical notes already have become too “bloated,” filled with redundant information that doesn’t help patient care and instead provides a source of frustration for clinicians. Even worse, the ever-increasing burdens of documentation have veered from the original intent of optimizing patient care toward fulfilling billing requirements. After all, according to the Social Security Act, Section 1862 (a)(1)(A): “no payment will be made … for items or services … not reasonable and necessary for the diagnosis or treatment of an injury or illness or to improve the functioning of a malformed body member.”
In 2021, Americans were given unprecedented access to their own electronic medical charts through the 21st Century Cures Act and, in October 2022, federal rules ensured this went into full force. With it came a heightened sense of scrutiny in what gets formally documented in the medical record. Fears of misinterpretation led many physicians to feel even more circumspect in what they include — more than half of physicians changed how they document their notes because of the legislation.
But sometimes what isn’t written in medical notes is the very thing patients and family members need most. The chart should be used to convey far more than just the sterile facts of a medical case. A moving “A Piece of My Mind” essay published in JAMA this year explored the merits of documenting love for a newborn child by the pediatric care team. In an essay for the American Medical Association’s Journal of Ethics, physician Thomas Robey wrote that the best documentation “reveals a doctor’s compassion for the patient.”
I know from experience how easy it can be to lose sight of who the person in front of you is outside the hospital when you’re utterly exhausted and you have 20 other notes to write. But it’s an especially important part of caring for patients — especially those who are critically ill.
So when I was a senior resident, I started routinely instructing the interns and medical students I oversaw to include a personal fact that patients chose to share with us in the first line of the note as a reminder of the human — not merely the disease or problem — we are treating, like “Ms. Y is a world-class bridge player with a past medical history of hypertension who presents with shortness of breath” or “Mr. J is an otherwise healthy four-time Broadway performer who presents with stomach pain.”
It became so popular that writing deceased notes — and even introducing patients during bedside rounds — this way became a tradition among my residency cohort. Many of my former interns continue doing it for their own patients today.
It’s turned out that the process of learning something unexpected about patients brings the medical team as much joy as it brings our patients.
In my mind, I often rewrite what was documented in my Nani’s deceased note: “a cherished grandmother of five,” “a biryani master chef,” “a survivor of the partition of India,” or “a yoga aficionado.”
If only someone had cared to know.
The medical record is an essential way for health care teams to communicate information. But today, more than ever, it also serves a valuable purpose for patients and their families. The most meaningful words can be found in the smallest observations, like a mention of a patient’s warm smile or how a physician responds when a patient tells them they’re afraid. I believe the medical record should be a manifestation of the most fundamental basis of the physician-patient bond: empathy.
Trisha S. Pasricha is a gastroenterologist at Massachusetts General Hospital’s Center for Neurointestinal Health and an instructor of medicine at Harvard Medical School.
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