The woman sitting across from me is eighty-one years old. I am sitting on her couch, not a straight-backed chair, and she is reclining on her sofa, not a hospital bed. I wear a sweater and leggings; I left my white coat at home. She offers me something to drink.
It is my first time doing a patient home visit. The purpose was to step outside the hospital snapshot and paint a fuller picture of a patient’s life: her family and support network, any physical or socioeconomic barriers to health, and how illness has affected her life.
Ms. P is a cancer survivor. She is also a survivor of two heart attacks. Outside of that, she is a writer, a thinker, and a conversationalist. She begins her story before I even ask a question, telling me of her childhood, her burgeoning interest in literature, meeting the love of her life, college, marriage, children, an advanced degree, writing a book, a second advanced degree, becoming ill, getting better, becoming ill again. Healing.
We reach her point in life, now. “I’m looking backwards, not forwards,” she explains. And she’s OK with that.
I once heard a story of a doctor who broached the subject of death with a patient by saying, “I know talking about this might make you uncomfortable,” to which the patient replied, "Not at all. I think it makes you uncomfortable.”
Studies show that many doctors avoid the subject. The New York Times piece “A Conversation Many Doctors Won’t Have” summarized it best: “In this country, we tiptoe around the D-word until so late in the game that even now, when more than 40 percent of Americans die under hospice care, about half do so within two weeks of admission.”
But why? Because physicians are afraid of making the patient uncomfortable? As the article puts it, afraid to “cause the patient grief or fear, or torpedo the family’s hopes?”
Or because doctors, themselves, are uneasy? Because in order to discuss something openly with another person, you first have to confront it, grapple with it yourself?
They were right; a person’s home is far more revealing than a hospital backdrop.
Ms. P has an interesting apartment. Decorating it fragments of her life; clues; conversation starters. A keyboard: what do you like to play? Wine bottles: who do you enjoy them with? And books, so many books, books filling cases! Do you still read them? Who is your favorite author? And the question she asked herself: Oh my, what am I going to do with all these books? I don’t want my poor children to have to go through them all!
I notice how casually the topic of death trickles back into discussion. As I grapple with whether that was an invitation to delve deeper, I feel like the doctor in the story. She makes eye contact, unafraid. Meanwhile, I shift my feet uncomfortably and want to change the subject. I justify my inability to probe further by telling myself that a home visit is not the place to take on this conversation.
But I think that’s only partially true.
If doctors are hesitant to talk about death, an interesting question is how do they actually experience it?
Retired physician Ken Murray published a piece in the Wall Street Journal last month that revealed a striking conclusion: doctors, on average, die differently from patients. “What’s unusual about [doctors] is not how much treatment they get compared with most Americans, but how little,” Murray writes. “They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.”
Murray proposed a reason for the discrepancy. Doctors are simply more aware of what is potentially life-saving care, and what is futile. Familiarity with the landscape of modern medicine also means recognition of its limitations. “During their last moments, they know, for instance, that they don't want someone breaking their ribs by performing cardiopulmonary resuscitation (which is what happens when CPR is done right),” he writes. Contrast that with the average patient, for whom “death is a much harder pill to swallow.”
The article captures these attitudes without judgment. It is not as though the physician’s model of dying is better, or one to strive toward. It is not unreasonable to feel outrage or denial over the prospect of death. Death is arguably the most terrifying part of life.
One thing is clear. Talking about death does not make Ms. P uncomfortable.
There are questions I want to ask, and her refreshing frankness makes me feel like I can. Do you have any regrets? She tells me about her preoccupation with work and wonders aloud if she balanced it right. “I was always striving, always looking forward,” she muses, as she takes me on a verbal tour of her achievements. She is not boasting. Just, quite simply, reflecting.
I have another question – are you religious at all? She tells me she would not call herself religious, but spiritual. She has recently developed an interest in meditation. Why meditation? “It helps me feel more connected to the natural course of things,” she tells me. “Things are born, they grow, they die. Meditating helps me feel relaxation over that process.”
I admire Ms. P. She speaks practically. Her words send the the message that just because something is difficult to confront does not mean you should put your head in the sand and pretend it does not exist.
Rather, profoundly aware that death is approaching, she cultivated the remarkable ability to take ownership. She chooses to make it what she wants. To accept it peacefully. To embrace her last years. She found a way to take control over the inevitable.
Her openness makes me feel ashamed of my inability to mirror her. I ask more questions, but continue to tiptoe around the D-word.
Our conversation winds to a close, and I thank Ms. P for her time. I’ve been asking all the questions, but as I leave she has one for me: “what are you going to do with all this?” I explain the purpose of the home visit and tell her that I am going to present her case to my preceptors and classmates. She nods. I thank her once again.
That evening, I type up my notes and think of what I am going to say to my preceptors. I have to send them a write-up. When I finally do, it is about allergies and medications, past medical history, family history, diet, exercise, drinking and smoking habits. Her books never make it into the medical narrative. Neither does her love story, nor her meditations on death.
“What are you going to do with all this?”
I summarized Ms. P’s life in clinical bullet points.
How do you capture 81 years in a medical story?
In medicine, we are privileged to enter lives. We get to know people intimately; we build rapport; patients trust us, cry to us. We cite confidentiality and patients tell us things they sometimes have shared with no one else. We talk about some of the most difficult, most personal topics imaginable.
And then just as quickly, we disappear. Whether we lose them to death, or something as mundane as the end of an appointment. The transience of the interaction is even more exaggerated for a medical student.
I left Ms. P’s apartment that day exactly how I had entered it. I felt like we had made an emotional connection, and what did I have to show for it? Three pages of scribbled notes.
At first I thought the reason I averted the conversation about death was an appreciation that I did not have a lasting relationship with Ms. P. I told myself that to open the subject, all the while knowing I would never follow up, would be callous.
It was a believable rationalization. But I realize now that my avoidance was not fully for her sake. It was because I was afraid.
Indeed, death is a hard pill to swallow.
When I think about the opportunity I missed, I feel sad. But the thing is, I know Ms. P wouldn’t want me to feel that way. She would tell me there is nothing to do but accept it.
(Note: certain details of this story have been modified slightly to protect the privacy of the patient.)