Snowflakes and Starfish

In a snowstorm each snowflake that falls is said to be unique.

There was a study done in 2006 (Walenksy, JID) in which the authors demonstrated in bar graphs the months of life saved by effective anti-retroviral medication when compared with the gains by drugs against several other chronic, life-threatening conditions such as relapsed lymphoma and coronary artery disease after a heart attack.  The per-person survival gains for HIV drugs were 160 months, that is, over ten years, compared with 90 months for lymphoma and 50 months for heart disease.  Ultimately, the article concluded that in the ten years since the arrival of therapy, more than 3 million years of life had been saved.  By now perhaps that snowy nightnumber has doubled.

For nearly ten years my clinic supported a small HIV-treatment program in Nigeria, north of Lagos.  We named it the Starfish program after a story about a man walking on a beach littered with thousands of starfish.  On the beach was a boy picking up starfish and one by one throwing them back into the sea.  The man approached the boy and asked what he was doing, that given the number of starfish on the beach, his efforts wouldn’t make any difference. The boy kept on bending over and picking up starfish and throwing them into the water.  “It makes a difference to this one,” he said as he threw.

I teach an elective Narrative Medicine class to first year medical students.  One of the students is writing about her experiences in an orphanage for sick babies in China.  The name of the orphanage is Starfish.  The student wrote the same story about the boy on the beach as the origin of the name of the orphanage.

For lives to be saved, for years of life to be gained, we need to continue to get patients into care.  Patients and doctors need to be aware of risk and amenable to testing.  Testing needs to be available, straightforward and inexpensive.  And once a diagnosis is made, care needs to be accessible, affordable and multidisciplinary.





“I get better, then go home.”

“Yes. Yes, Mr. B. Are you having pain?”

“Some pain in stomach. Hungry. I am hungry.”

“Mr. B., there’s a blockage. We can’t let you have any food today.”

Every day the same dialogue as the patient wasted and the family adamantly refused to tell him, or let us tell him that his cancer was out of control and he was dying.  Surely he must know, we thought. But we weren’t allowed to discuss it with him. And his English was not very good, either.

The students and I talked of the role of language. Capacity to speak English is just one thin layer of the role of language in the hospital.  We can always get an interpreter, as cumbersome and awkward as that may be.  But often we speak the same language and our words mean different things to us, or what we say makes no sense to the other.  We sometimes say a patient is a “poor historian” because their description of what is happening to them doesn’t fit the questions we are asking, doesn’t fit itself nicely into our definitions or our models. A patient having a heart attack may say that they have “squeezing” or “tightness” in their chest. But what if they say they have “a gulp” in their chest? What does that mean? Or, on another level, what is lost when the dialogue between patients and physicians doesn’t speak at all of the course of illness. With the elderly gentleman who is hungry, what is he really saying when he says “I get better, then go home”?  Is he saying help me please or is he saying you people are nincompoops and I want out of here? We say, “We can’t let you have any food today” and we aren’t saying there’s a massive tumor lodged in your esophagus making any form of oral sustenance impossible. And we don’t say we are so helpless in the face of this and you need to spend these remaining days being with your family.

“Mr. B., there’s a blockage.”

what is he really saying?

What the Heck is Narrative Medicine?

Well, it’s an obvious question, I guess.  What is Narrative Medicine?  I’m asked this question fairly often when I say I have a masters degree in the topic.  And a one-line answer is that Narrative Medicine recognizes and values the importance of stories in the medical encounter.  How I explain it is to say that a patient comes to the doctor with his or her story of illness. This illness narrative is part of the larger story of that patient’s life, usually an unanticipated chapter or sometimes a direct consequence of some aspect of that life story.  In a similar way  as doctor or nurses or medicl students, we bring our own life story to that patient encounter.  We may not talk about it but it’s there.  That I am a woman, a mother, a sister, I like to ski, I grew up in the country, I speak french, these things will affect what I bring to the encounter.  And then there is the story of the patient getting care from the doctor, of Joe Schlebotnowitz seeing Dr. Ball for his pneumonia.  Narrative Medicine gives us tools and perspectives to understand that when we listen closely to those stories and reflect on them, when a patient feels that he or she is really being heard and when a doctor or other provider feels that the connection with the patient has truly been made, then there is better care.