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Unofficial Prognosis

Unofficial Prognosis


Perceptions and prescriptions of a medical student
Unofficial Prognosis Home

When a patient is ready to talk about death, but a medical student is not

The views expressed are those of the author and are not necessarily those of Scientific American.


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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.)

Ilana Yurkiewicz About the Author: Ilana Yurkiewicz is a fourth-year student at Harvard Medical School who graduated from Yale University with a B.S. in biology. She was an AAAS Mass Media Fellow, and her work has appeared in the New England Journal of Medicine, Aeon Magazine, Science Progress, The News & Observer, and The Best Science Writing Online 2013. She has an academic interest in bioethics, currently conducting ethics research at Harvard after previously interning at the Presidential Commission for the Study of Bioethical Issues. She is also interested in general internal medicine and quality and systems improvement. Follow on Twitter @ilanayurkiewicz.

The views expressed are those of the author and are not necessarily those of Scientific American.





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  1. 1. Ilovethisstuff 11:38 pm 03/14/2012

    I find it odd that in one of the most religious countries in the world there seems to be almost a fanatical fear of even discussing death. You would think that with such a common, shared belief that there is some kind of afterlife that death would be just another part of life. Now while I certainly don’t want this life to be over anytime soon, I choose to think of the time after death the same way I think of the time before my birth. I was raised in a christian fundamentalist home and cant begin to describe the freedom of no longer worrying about whether or not I was going to make the “cut” after I died.

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  2. 2. Sue Brayne 4:50 am 03/15/2012

    Great article about a subject close to my heart.

    You may be interested in my book, The D-Word: Talking about Dying. I interviewed many end of life care workers, doctors, and relatives about the best way to open up those difficult conversations. I also have practical information on my website about sitting with the dying.

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  3. 3. aek2013 9:20 am 03/15/2012

    This is an insightful post, and I am impressed with how much you assimilated and took away from the encounter. I disagree with your perceptions on two points:

    The patient’s home is an absolutely perfect place to discuss death. Death is a normal, expected, guaranteed part of life, and it, until very recently, most commonly occurred at home.

    Your answer to the patient’s question about what you were going to have to show for the encounter is way off base, IMHO. You took away much, much more than 3 pages of scribbled notes, yes? You have more questions to consider, a different perspective on relating to patients, and some insight to your own professional growth and development needs. That’s an awful lot of benefit, not only to you, but to your future patients.

    One thing you didn’t address (probably not within the scope of this encounter and focus of this post) is your direct experience with patient death. While you may eventually pronounce a patient or be present at the end of a code, you are very unlikely to prepare a body after death. That’s one major advantage that nurses (should) have. Cleansing a body, carefully wrapping it, and ritually saying goodbye by attending to the physical remains in a respectful way allows nurses to assimilate the initial shock and disbelief of death into acceptance and comfort with it. I think physicians (and families/loved ones)are the poorer for not having this experience.

    Best to you!

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  4. 4. vagnry 2:01 am 03/16/2012

    Interesting article, and congratulations on your new insight.

    As HR-director I gradually realized, that most often people in trouble of any kind are shunned by collegues, friends and relatives (or no one takes the initiative to talk with them about their problems) , when what the person with problems really want is to talk and talk with anyone who cares. And, like you, I hope, I made it my “specialty” to take the initiative to talk about any problems they had, be it health, economy, relationships, alcohol or??

    Unless I had to fire them, I have always been met with relief and thanks, even some I fired have years later thanked me, because it gave them a new start.

    Of course, it is a bit awkward to start this kind of conversation, but for me and those with problems, in the long run it has been most rewarding.

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  5. 5. jbm32 3:09 pm 09/19/2012

    Thanks for your thoughtful piece. As you point out, it’s difficult for some physicians to engage in conversations about death and end-of-life wishes. It is often impossible for physicians to admit what’s difficult – so you have already developed a very important skill. Thanks for modeling it.

    The fact that your encounter took place in your patient’s home is perfect, and shows just how much you can learn about someone by being in their space. I believe that the most important conversations (between patients, their loved ones and family) take place in the home…around the kitchen table…in the library – surrounded by all those books and mementos you mention. Then, all the discoveries about values and wishes can be shared confidently with care teams, who can then help begin to translate these things into medical decisions that make sense for a particular individual.

    Without a doubt, we need to improve the medical community’s ability to receive and respect end-of-life wishes. I am confident it will happen. But we clearly have so much to learn from what our patients are doing in their own homes – as Ms. P reminds us!

    Check out The Conversation Project and its Conversation Starter Kit at theconversationproject.org – it’s a resource that will help individuals start the conversation on their own turf, empowering them to express their wishes to the medical community.

    - J. McCannon

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