A morte é um dia que vale a pena viver | Ana Claudia Quintana Arantes | TEDxFMUSP — Transcript

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1. 0:00Translator: Theresa Ranft Reviewer: David DeRuwe
2. 0:24Well, first I need to explain what I'm doing here.
3. 0:27I can't actually believe I'm here.
4. 0:31I'm a licensed doctor, graduated from São Paulo Medical School,
5. 0:34and very early on in medical school
6. 0:36I became interested in something a little unusual.
7. 0:41It was very difficult in the beginning, in the early years of my medical practice,
8. 0:46because I had different views from other people.
9. 0:51There's a poem by Manoel de Barros which I think is so me.
10. 0:56He had a girlfriend who said
11. 0:58she didn’t see a heron by a river,
12. 1:00she saw a river by a heron.
13. 1:05The way of seeing things, the way I was seeing it,
14. 1:11was to "unpractice" the rules, as Manoel de Barros so well put it.
15. 1:16So, I "unpracticed" the rules
16. 1:17because I started taking care of people in their final days.
17. 1:23As a resident doctor, my colleagues disliked me
18. 1:26because I'd fill my beds with dying patients.
19. 1:31And that made me understand more and more
20. 1:35how much medicine had to offer to these people,
21. 1:39which was contrary to what everyone said:
22. 1:42that those who work in palliative care have nothing to do.
23. 1:50In medicine, when you have nothing to do,
24. 1:52then you deliver the patient to palliative care.
25. 1:57The second most difficult part of my work was actually working in palliative care
26. 2:02because in our culture, palliative is something like a quick fix -
27. 2:06"You're going to do a palliative." -
28. 2:08I heard that in class, and it was painful to hear.
29. 2:11And palliative, in fact,
30. 2:13isn't like covering a loose wire with electrical tape.
31. 2:17"Palliative" comes from the Latin word "pallium,"
32. 2:21which means cloak or blanket,
33. 2:24like the capes worn by the knights of the Crusades
34. 2:28to protect them from the elements.
35. 2:31And this is exactly what I do.
36. 2:34I do palliative care, protective care -
37. 2:38protective care against suffering,
38. 2:40which is the nature of a serious, incurable disease,
39. 2:46with no chance of treatment, of control,
40. 2:51that threatens the continuity of life,
41. 2:54and is progressive in that person,
42. 2:57and, inexorably, leads to death.
43. 3:00When we talk about this long definition, I'm talking about the terminality
44. 3:04that everyone thinks has to do with time:
45. 3:08"They have less than six months. They're terminally ill."
46. 3:11"They have a week. They're terminally ill."
47. 3:13Terminality has to do with this concept.
48. 3:16It's a serious, progressive disease that is following its natural course.
49. 3:23And it produces adversities which we call suffering.
50. 3:28Disease is an abstraction of reality.
51. 3:30It's in the books.
52. 3:32It's under the microscope. It's in the definitions, the publications.
53. 3:36But when disease finds a human being,
54. 3:40it produces a unique melody, which is called suffering.
55. 3:44The disease may be the same,
56. 3:47but suffering isn't.
57. 3:49Suffering is unique - each person has their own.
58. 3:53And suffering has five different tones,
59. 3:57five different frequencies.
60. 3:59You have physical suffering, which makes a big noise.
61. 4:04It impedes you from hearing all the other sounds
62. 4:07from this human being.
63. 4:10This physical suffering, in palliative care,
64. 4:12is treated with urgency.
65. 4:16Because there's a real risk of death
66. 4:20if you don't deal with the human suffering.
67. 4:23There's a lot to be done in relation to symptom control.
68. 4:28Then you move on to the emotional dimension,
69. 4:31which has a different tone, although much more complex,
70. 4:35which has a Bach type of quality - very complex, very rich.
71. 4:40Medicine is simple, folks; psychology is difficult.
72. 4:45Every human being is unique and will express at that moment
73. 4:48the awareness of their finitude.
74. 4:49Everybody here knows we all die one day.
75. 4:52Does this shock anyone?
76. 4:55It's not a surprise, is it?
77. 4:57You don't imagine it could be in two weeks' time
78. 4:59from a stray bullet, for example.
79. 5:02When we talk about the emotional dimension,
80. 5:04there's this pressure to understand, to seek out
81. 5:10why this is happening.
82. 5:13In the social dimension of all levels of palliative care,
83. 5:16we realize that suffering is separated into four parts:
84. 5:21physical, emotional, social, and spiritual.
85. 5:25Since I'm kind of pretentious, I like to separate the social into two:
86. 5:30the family dimension and the social dimension -
87. 5:33because we never get sick alone,
88. 5:36we get sick together with our family.
89. 5:39We're part of our family,
90. 5:41and later we become a sick person in our family,
91. 5:44and after we die, a hole is left that needs to be taken care of.
92. 5:50The spiritual dimension is fundamental
93. 5:52because it gives us the essence of being human.
94. 5:56Spirituality isn't really about being religious.
95. 6:00Religiosity is just a way for you to achieve spirituality.
96. 6:04You find spirituality in the way you relate to yourself,
97. 6:08in the way you relate to others,
98. 6:10in the way you relate to nature, to the universe,
99. 6:14and with God.
100. 6:15There are those who relate to the universe,
101. 6:20and it has nothing to do with God,
102. 6:21but it doesn't give this spirituality less importance.
103. 6:25We look for meaning in our existence.
104. 6:28There must be the "whys."
105. 6:29And then we can endure the "hows", as Nietzsche said.
106. 6:35Palliative care, therefore, treats human suffering
107. 6:39in all these dimensions.
108. 6:41Contrary to what's been said,
109. 6:43there's a lot to be done in palliative care.
110. 6:46We work very hard.
111. 6:48Because when I look at a patient, I can't feel frustrated
112. 6:51by the fact that there is no cure for their illness.
113. 6:54Because if I graduated as a doctor to take care of people,
114. 6:56I can't get frustrated because their disease has no cure.
115. 6:59But many people do medicine to treat diseases.
116. 7:01There's nothing wrong in this, but this option must be clear to you.
117. 7:05The patient knows by your face
118. 7:08when you say to him, "Everything will be fine,"
119. 7:13and your eyes show the contrary.
120. 7:18The patient understands this frustration
121. 7:22as "There's no hope for me."
122. 7:27And then, we reflect
123. 7:31about the significance of time when we talk about palliative care.
124. 7:36To understand the importance of this work,
125. 7:38we have to realize that in a situation like this,
126. 7:45where you're in an outpatient clinic at 9 am,
127. 7:47and you're attending someone like this ...
128. 7:50She's really prepared herself for this appointment.
129. 7:52She's been waiting 3 or 4 months for it.
130. 7:54She'll have 15 minutes, maybe a little less than I have here,
131. 7:57to show you the importance of this.
132. 8:00She'll have 15 minutes of the doctor's attention.
133. 8:02She's been preparing 3 months,
134. 8:04thinking of the most important things to discuss in those 15 minutes.
135. 8:07Because part of those 15 minutes
136. 8:08will be spent by what the doctor will say to her.
137. 8:11She's prepared, she dressed herself up,
138. 8:14put on earrings, a new dress, a hat.
139. 8:19Is the one sitting on the other side ready for this?
140. 8:24Do they give this the same importance that she's giving it?
141. 8:28Because the time that the two will exchange is exactly the same:
142. 8:32the doctor will give 15 minutes of their time,
143. 8:34and she'll receive 15 minutes of their time.
144. 8:37The only difference between the two characters in this scene
145. 8:42is that she has no time to waste.
146. 8:44The one sitting on the other side has to understand how important it is
147. 8:48that she has no time to waste
148. 8:49with someone who doesn't care about a human being
149. 8:54right up to the last minute of their lives.
150. 8:56"There's no hope."
151. 8:59We can't possibly offer this to a person
152. 9:02who is much more than a body, much more than the biological dimension.
153. 9:07When we talk about statistics,
154. 9:10we know that, in Brazil, around 1,100,000 people die every year.
155. 9:16We will be part of this statistic at some point in our life.
156. 9:20At some point in our life,
157. 9:21someone we love very much will be part of that statistic.
158. 9:25In Brazil, about 800,000 people die of foreseeable causes.
159. 9:30They die from chronic or degenerative diseases
160. 9:33or from cancer.
161. 9:35This foreseeable death gives that person a chance
162. 9:40to reorganize their own existence
163. 9:43and to understand what steps they want to take.
164. 9:47And they need someone on their side who understands a chart, a statistic,
165. 9:51who does scientific studies.
166. 9:53Because science is brilliant, folks, being a scientist is wonderful,
167. 9:57you discover so many good things.
168. 9:59You can offer so much to these patients.
169. 10:03And science has an interesting characteristic:
170. 10:07everything you replicate has quality.
171. 10:11If you treat a million people and find the same result,
172. 10:15this is scientific.
173. 10:16this is evidence-based medicine.
174. 10:20But with art, it's the opposite.
175. 10:24If you replicate art, it's called piracy.
176. 10:28Human beings are unique; they're not copies.
177. 10:31They can't be replicated.
178. 10:32So you need to find the best that science has to offer,
179. 10:35from evidence-based medicine -
180. 10:37there's a lot inside palliative care
181. 10:40that's consistent, grounded, and technically well-executed.
182. 10:44You need to educate yourself and understand the importance of that
183. 10:47to offer the best for that patient, so they can get the best out of it.
184. 10:52If there's something very ethical to be done in palliative care,
185. 10:56it's not doing for the other what you would like for yourself.
186. 10:59That would be silly. You'd do things as if they were for you.
187. 11:02The most ethical thing we can do in palliative care
188. 11:05with a terminally ill patient
189. 11:07is to listen in the way we'd like to be heard.
190. 11:10Then we'll understand what it means to be on a chart
191. 11:13when you hold the hand of someone who's included in those numbers.
192. 11:18A lot of people ask if it's morbid, if it's difficult to work with death.
193. 11:24"Wow! Your work is beautiful! But it must be very difficult, right?"
194. 11:29But I can tell you something:
195. 11:32it's one of the most amazing jobs in medicine
196. 11:38because you don't suffer burnout,
197. 11:39contrary to what's said by many who study burnout.
198. 11:42They say that people who work in palliative care
199. 11:44or people who work with terminally ill patients
200. 11:46have very high rates of occupational stress,
201. 11:50but this is untrue.
202. 11:52Those who work with patients who die are indeed stressed
203. 11:56because they don't understand what they're doing there.
204. 11:58Those who work in palliative care are exactly the opposite
205. 12:01and have the smallest possible occupational stress rates,
206. 12:04because we learn to value life.
207. 12:07We're not an apology of death. Death isn't pretty.
208. 12:12It has a unique, sad beauty.
209. 12:15But death isn't beautiful; life is beautiful.
210. 12:19When you go into your office like that, sit in that chair,
211. 12:24and look at the patient,
212. 12:25look at that person in a different way -
213. 12:28as Chico Buarque says,
214. 12:30"In a different way that you'd never done before,
215. 12:35a warmer way of seeing than you were accustomed to" -
216. 12:39then the person knows there's someone who believes in them,
217. 12:43that they can handle this;
218. 12:45that, yes, they do have little time but that you're by their side.
219. 12:48You'll treat their symptoms with the same respect, persistence,
220. 12:51dedication, and determination with which you'd treat the cancer
221. 12:54or treat their heart disease.
222. 12:57Once you're able to relieve the physical symptoms,
223. 13:01the patient has the chance
224. 13:02to take care of everything they need to in life -
225. 13:05things we leave till the last minute.
226. 13:07Is anyone here ready to die today?
227. 13:09Don't raise your hand; come talk to me later,
228. 13:12and I'll refer you to a psychologist.
229. 13:15Nobody is ready, folks.
230. 13:18We always leave things till the last minute,
231. 13:21like put on lipstick, brush our hair, use the bathroom before traveling.
232. 13:25It's the same with every human being.
233. 13:28We have the illusion that it's the first impression that sticks.
234. 13:31But it's not. It's the last.
235. 13:34It's amazing how everybody, in their final days,
236. 13:37awakens, pours out
237. 13:40that which is the essence of the human being -
238. 13:42which is the loving state.
239. 13:45The generosity with which these people
240. 13:49distribute wisdom, knowledge, and gratitude
241. 13:54to those who work in this with dedication -
242. 13:59I cannot describe it here.
243. 14:02And then we'll live periods that can be filled with much joy,
244. 14:09especially because sometimes patients have two joys:
245. 14:12one is to live that moment without pain,
246. 14:15and the other is to live that moment when they can ask for forgiveness,
247. 14:19reconcile with a person they really love and are able to thank them.
248. 14:25They do this once,
249. 14:27and they're really happy telling you they were able to do it.
250. 14:31They say, "Can you believe that?
251. 14:33I did it!"
252. 14:36Then you can resume relationships,
253. 14:39redo situations,
254. 14:41understand your existence in a way that makes total sense
255. 14:45during your final days.
256. 14:48Because we know that at the end of a book,
257. 14:51we're able to understand a lot that we didn't understand before.
258. 14:55Soap operas and movies are the same - they make perfect sense at the end.
259. 15:00And if we're feeling no pain, no difficulty in breathing,
260. 15:03no discomfort, fear, guilt, or abandonment,
261. 15:08we'll be able to understand the meaning of all this.
262. 15:13This lady here was one of those who taught me the most.
263. 15:17We spent three months together.
264. 15:19I enter people's lives.
265. 15:21It isn't a pleasure meeting Dr. Ana Claudia, it definitely isn't.
266. 15:24First, because I'm a geriatrician,
267. 15:26dealing with that phase of life no one wants to go through.
268. 15:29And then I do palliative care, so it isn't a pleasure
269. 15:32because I enter that door that everyone wants closed,
270. 15:34which is the one of suffering, disease, death.
271. 15:37But once I enter, I start to become a very intense part
272. 15:42of that person's life, of that family's life.
273. 15:46And there's no way around it, we're human,
274. 15:48and we give and take.
275. 15:49And the lessons we receive are indescribable.
276. 15:55The day she passed away, I had the chance to say goodbye to her.
277. 16:02It was very special because when I was saying goodbye to her,
278. 16:08she shed a tear.
279. 16:10I shed dozens, but she shed only one.
280. 16:15And it was a tear that falls from the eyes of a person
281. 16:17who had the chance to break free from physical suffering,
282. 16:21who had the chance to break free from fear, guilt,
283. 16:25the loneliness of being in that moment,
284. 16:28for having to go through this moment alone,
285. 16:32freeing themselves from abandonment, reconciling with their family,
286. 16:36being present with everyone for most of their time,
287. 16:41admired by all for their courage to face
288. 16:45their final days.
289. 16:47And then that tear fell,
290. 16:50that yes, it was sad - a legitimate sadness, right?
291. 16:55We can't help but feel sad.
292. 16:58But it was a pure tear,
293. 17:00from the essence of a life that had found meaning in its existence
294. 17:04and was saved.
295. 17:06So when I speak about palliative care, I also talk about saving lives,
296. 17:11except that we save historical lives - life with a capital "L."
297. 17:16Not a body, not a disease that's healing,
298. 17:20but giving people the chance to board first class.
299. 17:24In this life, regardless of anyone's religion here,
300. 17:29in this life, we only die once.
301. 17:31You can't mess it up.
302. 17:34If we get the chance to find professionals
303. 17:37who commit their time to the importance we give to our time
304. 17:42and place priority on the things that we determine,
305. 17:47we'll be very lucky people.
306. 17:50And I'd like to add that I'm very happy
307. 17:52to know that there are more people who can one day believe
308. 17:56that death is a day worth living.
309. 17:58Thank you.
310. 18:00(Applause)