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← We’re doing dying all wrong | Ken Hillman | TEDxSydney

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Showing Revision 14 created 12/12/2018 by TED Translators admin.

  1. This is a picture
    of my grandfather and myself
  2. in the mid-1950s walking around Sydney.
  3. A few years later, in about 1959,
  4. my grandfather died
    very comfortably at home
  5. under the care
    of his general practitioner.
  6. This is a talk about death and dying,
  7. and it's too late to leave,
    and the doors are locked.
  8. (Laughter)
  9. But it's about death and dying
    only in the very elderly,
  10. naturally and normally coming
    to the end of their life.
  11. So, why was it that my grandfather
  12. was allowed to die at home
    quite comfortably,
  13. but my mother, 25 years later,
    it was a very different story,
  14. which I'll come to.
  15. One of the reasons was that at that time
    in the general practitioner's bag,
  16. there wasn't much more or less
    than what you found in hospitals.
  17. This isn't all that long ago.
  18. So hospitals were where you went
    if you were sort of sick,
  19. but if you were poor as well,
  20. and you sat in your bed
    being very carefully nursed,
  21. and sometimes you got better,
    and sometimes you didn't.
  22. You can see this in films at the time,
  23. where if anyone gets injured
    in the street, someone shot or stabbed,
  24. then there's a bystander
    shouts, "Quickly call a doctor!"
  25. A few years later, the bystander says,
  26. "Quickly call an ambulance!"
  27. So what was it in hospitals
    that was changing?
  28. It was about the early 1960s,
    and there was an explosion of technology,
  29. marvelous ways that we could image
    every single part of the body,
  30. complex surgery,
  31. we divided the body into "-ologies" -
  32. neurology, cardiology,
    gastroenterology, etc. -
  33. and the surgeons also divided the body up
    into different parts that they worked on
  34. and gave themselves different names.
  35. And then, of course,
    there was intensive care.
  36. And 25 years after my grandfather died,
  37. I became an intensive care specialist
    in a large London teaching hospital.
  38. And I thought I could keep
    people alive forever.
  39. These were the early days
    of intensive care.
  40. I thought it was infinite,
    what we could be doing.
  41. And in many ways, in some ways, it is.
  42. If I had a relatively normal
    brain and a liver,
  43. I could keep everything else going.
  44. At that time I had
    six intensive care beds.
  45. I now work in an intensive care unit
    where there are 40 intensive care beds.
  46. 4000 Australian dollars
    per patient per day.
  47. But it's not only the number of beds
    that have changed,
  48. it's also the type of patients
    that we're treating now in intensive care.
  49. Many of them are over the age of 60,
  50. many of them are in their 80s and 90s,
  51. and many of those are
    in the last few days or weeks of life.
  52. So how did this happen?
  53. Well, it's sort of like a conveyor belt.
  54. With my grandfather,
    he got sick in the community,
  55. it was expected that he got treated
    and managed at home.
  56. If you get sick
    in the community these days,
  57. we almost always call an ambulance.
  58. It's very frightening
    to have someone become very sick.
  59. The ambulance takes you
    to the nearest emergency department.
  60. Emergency departments are highly stressed.
  61. They resuscitate you, they package you,
  62. and they get you ready
    for admission to the hospital.
  63. And then you become
    even sicker in the hospital.
  64. And here I am,
    at the end of the conveyor belt,
  65. in the intensive care unit,
    waiting for you.
  66. This is a picture of my mother
    and my brothers and sisters.
  67. It wasn't the same
    as my grandfather, for my mother.
  68. The last six months of her life,
  69. she was admitted 22 times
    to acute hospitals.
  70. She wasn't told
    what exactly was wrong with her.
  71. People didn't tell her
  72. that as you get older,
    things start to deteriorate,
  73. and you become sicker.
  74. She wasn't given any choice about this.
  75. It was simply she got sick,
    and she got put on this conveyor belt,
  76. admitted to hospital.
  77. I had to be a son
    in those situations, not a doctor,
  78. so I didn't interfere
    with any of those decisions
  79. until finally a very special doctor
    sat us all down and said,
  80. "Your mother is old, and she's dying,
  81. and we should let her go in peace."
  82. That was such a relief for all of us,
  83. and of course,
    it was a relief for my mother.
  84. And so, 48 hours,
    approximately, after that,
  85. my mother passed very comfortably away.
  86. What did my mother die of?
  87. Well, when I was an intern,
    we were allowed to write down "old age,"
  88. but we're not allowed to do that any more.
  89. We have to make up a medical term.
  90. So for example,
  91. everyone that dies, their heart stops,
  92. so we write down
    "cardio vascular disease."
  93. So cardio vascular disease
  94. is the most common way of dying
    in our community.
  95. (Laughter)
  96. What was really troubling for me was
    that my mother kept asking me,
  97. "What is wrong with me, Ken?
  98. If only they'd find out
    what was wrong with me,
  99. then we could do something about it."
  100. This is very difficult to explain
  101. because when you get old, you get sick,
  102. and it's very difficult to put your finger
    on exactly what's happening.
  103. And also, medicine
    is based on the diagnosis.
  104. That's what we learn about for six years:
  105. the diagnosis.
  106. A single diagnosis.
  107. Hospitals are wonderful places
  108. if you have a single problem
    that can be fixed.
  109. However, when you become old,
  110. the combination of all the so-called
    chronic diseases or co-morbidities -
  111. whatever the medicalized word is -
  112. add up to something
  113. that as yet, we haven't got
    a name or a number for.
  114. I like this word: frailty.
  115. Because it comes at it
    from the patient's point of view.
  116. It's not a series of medicalized terms,
  117. it's frailty.
  118. And I'm sure many of you in the audience
    have experienced people that are older,
  119. and you know what happens
    as you get frail,
  120. as you get more frail.
  121. And I particularly like this frailty score
    because it' got nice pictures.
  122. So you start off at number one,
  123. you are very fit
    in your sixties, seventies,
  124. and then you gradually
    get more and more frail,
  125. more and more vulnerable.
  126. Until you find it
    very difficult to get around,
  127. until you become even more vulnerable.
  128. Then you are confined to a wheelchair,
  129. and finally, you haven't got
    the strength to get out of bed.
  130. Despite all the specialties
    and all the drugs
  131. and all the marvelous things
    we can do in medicine,
  132. age-related frailty is not curable.
  133. So TED Talks are not only
    about the problem,
  134. they are also about the solution,
  135. and what I'd like to talk to you about
  136. is what we are trying to do about it
    in my own hospital.
  137. It's not really about high technology
    or IT or anything like that.
  138. It's not fancy stuff.
  139. But I'm very fortunate
    to work in an organization
  140. that has a culture of looking at things
    in a different way,
  141. putting the patient in the center,
    rubbing all the other things out,
  142. and thinking, well,
    how can we do this in a better way.
  143. So, believe it or not,
  144. doctors in hospitals
    find it very, very difficult
  145. to recognize people at the end of life.
  146. I know that sounds very hard to believe.
  147. So we are working on a tool
    that gives us some idea
  148. about people that have got months
    or perhaps a year to live.
  149. It's called the crystal tool.
  150. It's very simple, can be used
    by people at the bedside.
  151. It's just a combination
    of things that are logical,
  152. like age and the frailty score
    and things like that.
  153. Now, with everything
    that we do in medicine,
  154. there's uncertainty.
  155. Uncertainty is inherent in medicine.
  156. So take, for example, a 20-year-old person
    with a terminal brain tumor -
  157. we do all the tests,
    and we find that it's terminal.
  158. The first thing we do -
  159. well, the first thing
    the person wants to know is,
  160. "How long I've got to live?"
  161. So just using all the data we've got
    of everyone with that particular tumor,
  162. we can say, "Well, maybe a year.
  163. It could be six months.
  164. It could be two years.
  165. Maybe, in exceptional circumstances,
    it may be three years,
  166. but the disease is terminal,
    and we can't do much about it."
  167. And it's the same thing with the elderly.
  168. Some score like this will at least able us
    to move to the next stage.
  169. And the next stage
    is not rocket science either.
  170. But believe it or not,
  171. doctors are very uncomfortable
    talking to elderly people about dying.
  172. I'm not too sure why that is.
  173. So the next step after we recognize
    these people is to begin a discussion
  174. in an honest and empathetic way.
  175. The next step after that is also logical,
  176. but believe it or not,
    this doesn't occur either.
  177. It's to empower the patients
    and their carers with choices.
  178. So you'd be honest about
    where we think they are in life,
  179. how long they've got to live,
    and how would they like to live that life.
  180. Maybe they'd like to keep
    coming in and out of hospital,
  181. maybe they'd like the most
    aggressive treatment available,
  182. but at least, it would be
    based on proper data
  183. and a proper way to make a decision.
  184. However, many people, we've found,
  185. don't want to keep coming
    in and out of hospital
  186. once they know they haven't got
    terribly long to live.
  187. In fact, about 70% of people,
  188. in this country, in America
    and the United Kingdom,
  189. when are asked, would rather die at home.
  190. Now, this contrasts with,
  191. about 70% of you will die
    in acute institutions, in hospitals.
  192. So there's a discrepancy here,
  193. which sort of reinforces the fact
  194. that we are not talking to people
    about this in the proper fashion.
  195. The long term solutions
    are not in hospitals.
  196. The long term solutions are things like
  197. putting the family doctor
    more in the center of care;
  198. advance care directives,
  199. you need to be thinking about this
    while you're able to,
  200. talking with your loved ones
    and writing it down.
  201. But then we also need
    to move resources and support people,
  202. if they are going to die in the home,
  203. so that they are looked after,
  204. so that they've got respite care.
  205. I'd like to be controversial here
    and say that I don't believe
  206. the last few months or year of life
    in a very elderly person
  207. is a medical challenge.
  208. Maybe if they've got pain,
    or they are uncomfortable - sure.
  209. But most of it is about community support:
  210. facilitating the carers,
  211. making sure their house is clean,
    making sure they've got food,
  212. making sure they're washed
  213. and all of those sorts of things.
  214. This is not so much a health
    or medical problem.
  215. So dying in the elderly has been hijacked.
  216. Patients are divided
    into individual organs,
  217. and we try to fine-tune
    and make these individual organs better.
  218. A little bit like birthing was
    in the 50s or 60s,
  219. which was also hijacked.
  220. Women in labor were taken to hospital,
  221. strung up, legs apart, baby taken out,
  222. baby put in with all the other babies,
  223. fathers not allowed
    to be with their wives,
  224. fathers not even allowed to hold the baby.
  225. This was the normal way
    that we conducted birthing
  226. in the 50s and 60s.
  227. That's similar to what's happening
    with the elderly at the moment.
  228. So this is where many of you will die:
  229. surrounded by high technology,
  230. cared for by well-meaning people
  231. with a lot of expertise
    in their own particular area.
  232. It's also
  233. that we hear about medical miracles
    almost on a daily basis,
  234. and that's exciting.
  235. But we hear about what health can do,
    what modern medicine can do,
  236. but we don't hear very much
    about what modern medicine can't do.
  237. We need to be far more honest
    with our community
  238. about the limitations of modern medicine.
  239. There's rarely a day goes by
    when I do my ward rounds with colleagues
  240. that one of us doesn't say, "Please,
    don't ever let this happen to me!"
  241. So this is one of the most important
    decisions in your life.
  242. You need to take control
    over your own end of life.
  243. Thank you very much.
  244. (Applause)