Doctors rarely talk about death.
Mostly it's because we're in the business of trying to help people prolong their lives, which almost always makes death an unwelcome topic of discussion.
Too often, death is seen as failure, though it shouldn't be. Death is a natural part of the cycle of our lives.
After all the time I've spent working in hospitals I'm less afraid of death than I used to be. It can be scary to see death up close. But the end can seem a blessing after you've watched patients suffer and witnessed medical treatments that were dehumanizing and fruitless.
Even though my medical practice is mostly confined to the office now, I still confront death regularly. As a part of my practice, I decided to be more mindful about it by keeping a list of the patients I've cared for who have died. I call it my necrology.
I started by keeping names in a small notebook. Later, I moved it to a computer file so that I wouldn't lose it. I add names to the list about four or five times a year. Whenever I pull up my necrology, I look it over and remember the names of those already there. For most of them, I was their doctor for years and stayed involved until their dying breath. Others rocketed into and out of my medical practice like meteors, where I was but one witness among many.
Ray was a patient of mine diagnosed in his mid-60s with metastatic prostate cancer, the kind that spread beyond the gland and into his bones. Amazingly, through the use of hormonal treatment that starved his cancer, he lived more than a decade past his diagnosis. Eventually his cancer became resistant to the treatment, and he died. For Ray, his family, and his doctors, his extra time was a medical victory.
Tricia was a young and unfortunate patient I met only twice. During her first appointment, she revealed that her boyfriend had beaten her. I counseled that nothing could justify such treatment, and that help was available if she had the courage to leave. I gave her the number of a women's shelter where I knew she could get support and legal aid to protect herself.
The next time I saw her, she told me things were better. She never called the shelter. I last heard about Tricia when a police officer called me for information about her. She'd been found dead at age 34.
I started my necrology because early in my career I'd seen a colleague keep a file of his deceased patients. I never asked him about it, because it seemed too personal. But I liked his idea, and started my own list.
In everyday medical care, the practice of reflection is too often overlooked. Remembrance is what makes us human. Somehow, keeping tabs on who has died over the years keeps me humble. It also reminds me that in spite of all of medicine's marvels, and whatever I might be able to do, our patients all eventually die.
When a patient of mine died recently amid complicated medical circumstances, I sought counsel from colleagues about what, if anything, I could have done differently. The conversations led me to ask about their remembrance practices. I learned that all doctors have memories of patients now deceased, but besides lamenting them when they died, very few colleagues have a formal habit of remembrance, such as keeping a list. The prevailing sentiment is that as doctors, we are trained to acknowledge death, and then to quickly move on, lest we become too emotionally involved.
To try to better understand my own necrological compulsion, I circled back to my inspiration: a former colleague, Dr. Adam Cifu, an internist like me, at the University of Chicago.
Cifu told me that he started his list the first time one of his patients died — in 1995, from complications of HIV. Beside each name, he adds a sentence on the cause of death and interesting points about the illnesses — what he artfully terms "a medical epitaph."
"The process lets me remember the people, get a sense of what people die from in my practice ... and potentially teaches me something," he wrote.
I wondered if Cifu sought solace and advice from the doctors he works with after a patient dies, as I have over the years. Yes, he told me. "A little bit of it is mourning and a little bit of it is clearing my conscience if I feel there were things I could have done better," he wrote.
What will become of our necrologies? "They'll just keep getting longer," Cifu told me, "until our names are added to the list."
John Henning Schumann is a primary care doctor in Tulsa, Okla., where he teaches at the University of Oklahoma School of Community Medicine. He also hosts Public Radio Tulsa's Medical Matters. He's on Twitter: @GlassHospital
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Transcript
SCOTT SIMON, HOST:
Most doctors would rather focus on keeping their patients alive than to deal with their deaths. But Dr. John Henning Schumann keeps a running list of how his patients die, sometimes long after they've left his care. He wrote about what he learned from his list for Shots, which is NPR's Health blog. Dr. Schumann joins us now from Oklahoma City. Doctor, thanks so much for being with us.
JOHN HENNING SCHUMANN: Glad to be with you, Scott.
SIMON: What led you to start keeping this list?
SCHUMANN: Well, when I was a young doctor, there was a colleague of mine, a guy named Adam Cifu, who had this practice of keeping a file drawer. And I noticed that it had deceased patients in it. And I always wondered about that, but I was a little bit too shy to ask. It seemed a little too personal. But he was someone that I really respect, so I thought, well, maybe I should keep a list or a tally of the patients I care for that die. It seems like a reasonably good idea. So I started to do it and add to it about four or five times a year.
SIMON: Now these are not necessarily, as I understand, patients who have died when they're in your care but sometimes after they've left your care and have been through gosh knows how many doctors.
SCHUMANN: Well, right. It's all kinds. So sometimes they're patients I've cared for for more than a decade, and sometimes they're patients I've only met a few times - maybe in the hospital and then afterward as an outpatient. But the list that I keep helps me remember them. And so when I take out the list to add to it, I think back on all of these patients and, you know, remember the circumstances of their lives and of their deaths. And I think, you know, I learn something from that in the process.
SIMON: Other doctors know you do this?
SCHUMANN: Well, until I did this piece...
SIMON: I guess they do now, certainly, yeah.
SCHUMANN: They do now. But in researching - doing research for the piece, I asked several of my colleagues. And it turns out that very few doctors actually do keep these kinds of lists. But subsequent to the report, actually, I learned of one physician who writes obituaries for his patients. He usually waits until some time has elapsed after the patient has died, and then he goes back and I think looks through their chart and actually writes his own obituary about the patient.
SIMON: Does it help you see your patients as people to do this?
SCHUMANN: Absolutely because when I remember the patients that are on my list I think about their family members with whom I've interacted and, you know, what was involved in the suffering and illness as they approached the end of life.
SIMON: Now that you've written this piece for the Shots blog and done this interview, are you prepared for the patient who says, I just don't want to wind up on your list?
SCHUMANN: I certainly am (laughter). I mean, we certainly do strive to, you know - one of the reasons we don't talk about death is because we are cultured I think both as doctors and as a society to see it as some sort of failure when really it's not.
SIMON: John Henning Schumann is a doctor and a writer in Tulsa, Oklahoma, where he hosts Medical Matters on Public Radio Tulsa. You can read his story on Shots, the NPR Health blog. Dr. Schumann, thanks so much for being with us.
SCHUMANN: You're welcome. It was a pleasure. Transcript provided by NPR, Copyright NPR.
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