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← Honoring the stories of illness | Dr. Rita Charon | TEDxAtlanta

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Showing Revision 7 created 12/27/2018 by Peter van de Ven.

  1. Thanks very much.
  2. So, here's a doctor from New York,
  3. dressed in black,
  4. talking to you on September 13th.
  5. And you're going to think
    I'm going to talk about death,
  6. as did all New Yorkers
    over the past many days and weeks.
  7. Well, I am.
  8. But I'm going to talk with you about that
  9. in terms of joy and in terms of truth.
  10. I need to tell you
    a little bit about my medicine
  11. in order to get to the joy.
  12. Todd is right that I came to medicine,
  13. not knowing a whole lot about it,
  14. but I came to medicine
    because I was a life-long reader.
  15. I was the kind of kid who would get
    10 books out of the library
  16. and read them all before they were due,
  17. and I hope many of you were like that too.
  18. And as a reader, I understood,
    once I opened my practice,
  19. once I finished all the business
    of staying up all night being an intern,
  20. that what I did in the office,
    what patients paid me to do,
  21. was to pay exquisite attention
    to the narratives that they gave me -
  22. which were in words, in silences,
  23. in those facial expressions
    that we saw earlier today,
  24. in their body, in how the body changed,
  25. in the tracings and pictures
    that we had of their body,
  26. in what other people said about them -
  27. and that it was my task
    to cohere these stories
  28. so that they, at least provisionally,
  29. made some sense;
  30. to take these multiple
    contradictory narratives
  31. and let them build something
    that we could act on.
  32. So that's what we did.
  33. I realized right away
  34. that I didn't know very much about stories
    even though I was a voracious reader,
  35. and I went kind of timidly
    to the English department -
  36. I was at Columbia already -
  37. I went to the English department;
  38. I said, "Could you teach a doctor
  39. something about stories
    and how they work?"
  40. And God bless them,
  41. the English department
    was very happy to take me in.
  42. You know, I wrote prescriptions for them;
  43. (Laughter)
  44. I gave them referrals.
  45. But I think they really joined me
    in the idea that the knowledge they had,
  46. very specialized narratological knowledge,
  47. could do something good in the world.
  48. They didn't let me out
    until I had a master's degree, a PhD.
  49. They let me write a dissertation
    on Henry James, who is my beloved author.
  50. And I want to tell you
    how the story training -
  51. awakening and nourishing
    my own sense of story -
  52. how it transformed
    my teaching and my practice.
  53. This was not the first time that anyone
    had put literature with medicine.
  54. By then - this was the '90s already -
  55. by then, there were persons in -
    I hope you know this -
  56. in philosophy, in history,
    in literary studies, in ethics
  57. who had come into medicine,
  58. and they were all helping us
    to improve our practice
  59. based on human learning
  60. in addition to the scientific
    knowledge we all had.
  61. So, I was by no means the first one
  62. to bring literary studies
    into the practice of medicine.
  63. But somehow, by starting as a doctor first
  64. and then getting all this training
    in stories and how to understand them,
  65. I think I had a more -
  66. my sleeves were more rolled up
    in using this knowledge.
  67. So my colleagues and I at Columbia
  68. kind of invented, or created, a field
    that we called "narrative medicine,"
  69. which we define very simply
    as clinical practice
  70. fortified by the knowledge
    of what to do with stories.
  71. So that with these skills -
  72. in first of all having a sense of story,
  73. and then being able to recognize
    when someone is telling you a story,
  74. to absorb the story,
  75. to receive it whole,
  76. to receive all of it,
  77. including even those unsaid
    hints and guesses
  78. about what might be left unsaid,
  79. to absorb them,
  80. to interpret them,
  81. to honor them,
  82. and then to be moved by them
  83. and to be moved by them to action.
  84. So this is what we called
    narrative medicine.
  85. We found very effective, economical ways
  86. to teach
  87. the skills of reading and writing
    and storytelling and receiving
  88. to medical students, nursing students,
  89. doctors, social workers,
    chaplains, patients, families -
  90. all the people who come
    in and out of hospitals.
  91. I'm assuming that some of you
    are from healthcare,
  92. either as professionals
    or as patients or as families.
  93. You know the kinds of silences
    there are in those elevators in hospitals.
  94. You know what happens
    when you pass someone in the hallway
  95. who has no legs or who's bleeding.
  96. You know that.
  97. Our challenge was to bring
    to these people,
  98. perhaps used to illness,
  99. perhaps hardened against it,
  100. ways to open their own springs
    of imagination,
  101. of creativity,
  102. of receptivity
  103. so that they would not just
    not lose their sense of story,
  104. but, indeed, build it.
  105. There were amazing
    transformations in my practice.
  106. I work in a rather shabby clinic
    in Presbyterian Hospital,
  107. which is in New York - in the way,
    way upper parts of Manhattan -
  108. and as I improved
    my own capacity to read closely,
  109. where every word counts,
  110. I was able to learn how
    to listen closely,
  111. where every word counts,
  112. So, in the office,
    when I saw a new patient,
  113. I wouldn't ask millions
    of questions anymore,
  114. like, no doubt, many of you
    have been asked by doctors.
  115. Typically what we do,
    faced with a stranger,
  116. is we kind of start at the top
    and work down.
  117. I'm sure you've had this:
  118. Do you have headaches?
  119. Do you have nosebleeds?
  120. Do you have trouble with your hearing?
    With your swallowing?
  121. Do you have trouble with your breathing?
  122. And all the way down.
  123. And what operations have you had?
  124. And what allergies do you have?
  125. And what medicines are you on?
  126. So I learned not to do that,
  127. and instead to say,
  128. "I will be your doctor,
  129. and so I need to know a great deal
  130. about your body
    and your health and your life.
  131. Please tell me what you think
    I should know about your situation."
  132. And when I did that,
  133. and when I let persons simply answer,
  134. instead of writing things down
    or typing or computing,
  135. I would simply sit in my chair,
  136. hands in my lap,
  137. and absorb what was being said.
  138. And what I learned,
    right from the beginning,
  139. is that persons were not only able
    but deeply thirsty
  140. to give profound, detailed,
  141. eloquent accounts of themselves.
  142. They didn't always know how
    or how to start.
  143. One woman says, "You want me to talk?"
  144. (Laughter)
  145. Another man, one of the first
    to whom I made this invitation,
  146. started to tell me
    about the death of his father
  147. and then the death of his brother
  148. and then the trouble he was having
    with his teenage son.
  149. And then he starts to cry.
  150. I broke my silence:
    I said, "Why do you weep?"
  151. He says, "No one
    ever let me do this before."
  152. So a woman I saw - I just saw her
    a few days ago when I made a house call.
  153. Well, she's been my patient
    for a long time.
  154. She -
  155. as anyone I speak about
    or [write] about,
  156. knows what I'm to say,
  157. has read what I've written
  158. and has given, as we say,
    informed consent for me to do so.
  159. So I'm not breaking any secrets.
  160. I certainly won't use the name,
    but she has - we have her blessings.
  161. She had breast cancer 20 years ago.
  162. She had a mastectomy -
  163. sorry, she had a lumpectomy,
    small operation.
  164. She was on medicine for five years;
    she was told she was cured.
  165. About a year ago, she developed
    a lump in that same breast.
  166. On biopsy, it was a new cancer.
  167. She was stoic about the recurrence.
  168. She underwent a mastectomy this time.
  169. It's a big operation;
    it was a disfiguring operation.
  170. She declined breast reconstruction.
  171. She said she was too old for that.
  172. And she recovered uneventfully
    from the surgery.
  173. But then she began to worry
    that the cancer would come back.
  174. She was in my office every other week.
  175. On the off-week, she was
    in the office of the breast surgeon.
  176. She felt a new lump;
  177. she felt something funny under her arm;
  178. there was something
    not right about the scar.
  179. She was terrified that it would come back.
  180. We kept reassuring her:
  181. "No, that's just how the tissues heal";
  182. "No, that's your cancer markers."
  183. We did blood tests
    to make sure there was no cancer.
  184. I did an ultrasound of the scar.
  185. She could not be reassured,
  186. and so she thought
    that we were deceiving her.
  187. Finally, after another one of these exams,
  188. breast examinations in the office,
  189. I thought I could imagine
    what was deep to the scar.
  190. I leaned back
    against the sink in my office.
  191. I told her I thought
    I understood what the fear was.
  192. I told her I thought what she feared
    was that she would die,
  193. that she had the courage and the vision
    from these two illnesses
  194. to know what many of us know
    but refuse to really face up to:
  195. that is simply we will die.
  196. I told her that I thought
    she was in the glare of this knowledge.
  197. I said, "We don't know
    what will end your life.
  198. Your body may well harbor now
    the disease that will do so.
  199. It might be the breast cancer.
  200. It might be something else.
  201. But we know something
    will take your life."
  202. I said I couldn't do more than we had
    to assure her of her health,
  203. but here is something I could do:
  204. I could stand with her
    in the glare of that fear.
  205. And right after that conversation,
    I checked back with her by phone.
  206. She said she felt much better.
  207. She felt much more relaxed.
  208. She wasn't worried the way she had been,
  209. and she was sure that I was right.
  210. Now, the way I knew that,
  211. the way I came to understand it
    is that I'd been writing about her,
  212. and I'd been showing her
    what I wrote about her.
  213. And in that way, we made contact
    through her illness,
  214. through her fear,
  215. through the glare of death
  216. that was there now, in the room with us -
  217. as it always is -
  218. but there it was in the room with us,
  219. and we could ...
  220. accept it.
  221. And more than that,
    we made contact through it.
  222. It helped me and this woman
    to understand what medicine is for,
  223. and even bigger than that,
  224. in excess of the medicine,
    what ordinary living is for.
  225. It's for the making of contact.
  226. It's through the contact.
  227. And of course, illness exposes,
  228. so that I'm privileged as a doctor
  229. to be in situations where there is
    very little separating me from a patient.
  230. Do you see what I mean by "exposes"?
  231. You're down to the floor of who you are
    in the presence of illness.
  232. So, not only did we kind of help
    the immediate problem
  233. with her own fear,
  234. but we made enduring,
    life-long contact -
  235. the two of us.
  236. This is possible all the time.
  237. This is possible all the time.
  238. I told her -
  239. I think I told her about a novel
    by John Banville called "The Infinities,"
  240. in which he overhears Zeus
  241. up on Mount Olympus
  242. looking down at these mortals
    that he's created,
  243. and Zeus envies the human beings
    their mortality.
  244. He says, "It's your death
    that gives your lives meaning."
  245. And so my patient and I understand that,
  246. that it's in the dying,
    in the limits of the life,
  247. that we have our meaning,
  248. and that we pour ourselves
    into those things that endure -
  249. the family, progeny,
    work, art, dance,
  250. life,
  251. play.
  252. Those things that will endure
  253. in time and with others
  254. are those things that give us meaning.
  255. And they're only available to us
  256. through the presence
    and the truth of death.
  257. When I say, "What is medicine for?"
  258. my patients have been able to teach me,
    as have my students, what it's for.
  259. When we teach narrative
    medicine in groups,
  260. it doesn't matter who - doctors,
    nurses, chaplains, patients, families -
  261. we all join together in a clearing.
  262. These narrative storytellings
    help us to form clearings -
  263. you know, in the forest
  264. when the trees kind of thin out,
    and it's moss and it's ferns? -
  265. and we're able,
  266. many different ones of us
  267. from often rather divided camps,
  268. can come together
    in the clearing of storytelling,
  269. and within the clearing
    of this human gift of mortality,
  270. and that's where the truth is exposed,
  271. and that's where the freedoms emit.
  272. What medicine is for
  273. is to donate the expertise
    to an act of fidelity,
  274. to give someone company
  275. and to form staunch, sturdy affiliation
  276. within our clearings,
  277. within our dyads,
  278. within our shabby clinics
  279. so that no one has to be
    in the glare of sickness,
  280. or even the glare of death,
  281. alone.
  282. I'm fortunate to be a doctor
    to be able to do this.
  283. Anyone in any enterprise
  284. has the chance for making contact,
  285. as in this room - a clearing.
  286. Thank you.
  287. (Applause)